But while change is happening, it can be quite painful, exhilarating, and stressful.
What I’m learning is that the end result is often worth the struggle. Imagine! I’m 43 years old and still learning every single day.
My marriage is an example of a successful never ending change process. As two partners grow, gain education and work experience, mature and develop as individuals, and learn more and more how to work with another person on some of the biggest decisions in life, there are days when working together seems impossible. There are hard days, easy days, amazing days and dull days. But as we grow, we have grown to love and respect each other, and the new versions of each other, each year.
For 24 years we have been learning and growing and gaining our mutual admiration. The two of us 24 years ago were high school graduates with no knowledge of the real world. Today we are 43 and have done so much together, in fact it feels like we have grown up together into the caring adults we are today.
Raising children is a change process. They develop and grow and push you away but eventually, hopefully, you get to spend time with your adult child and to experience their growth and learning and experiences…. and maybe be a part of some as well. I look forward to the complete metamorphosis, but I also am trying to enjoy the parenting process.
Christmas brings emotions out like no other time of year. You grieve for your little child who is no longer there, but celebrate the young person that is developing in front of your eyes. You remember loved ones you lost and who are no longer around your tree, but know they will be forever missed and loved. You think of all the people you wish were with you but couldn’t or wouldn’t come. You may even mourn yourself and the childlike wonder that Christmas use to bring to you.
But isn’t Christmas also a tradition of change? When I was a child, we cut a tree on Tips Eve (December 23) and put it up on Christmas Eve. This year we put our tree up on November 30! My parents would not have a tree when they were children, or if they did it was up on Christmas morning and the tree itself was the main family gift. But in the end, I think we can agree, there is just something about Christmas that makes it hard to hate it. It is based on miracles, love, goodness, and neighbourly love. The value of animals and all of earths blessings. The importance of tradition along with the knowledge that change is needed in our world.
Change is certainly as good as a rest because it refreshes us and it helps us avoid becoming stagnant in our old ways or thoughts or biases. It increases our appreciation of the past, the present and the future.
I believe change is an agent of hope, a test of love, and a required element of life.
There’s no snow in my town. Perhaps that’s why it’s surreal.
Sitting by the fire eating gingerbread and sipping coffee, surrounded by my fur babies, I can’t help but reflect on this past year.
We have all been impacted by the pandemic. Whether it’s simply the requirement of isolation, distancing and mask wearing, or something more personal, this is a year no one will forget.
Sometimes it’s easy to scapegoat 2020 for all the bad stuff. But bad stuff happens every year. This year the quantity and the quality of the bad stuff is worldwide and feels more significant I think.
In my personal life, I can’t help but look at 2020 as a year of transformation. The delays I experienced in February, March, April, May and June were very difficult to live with. The year started with chronic pain and ended with remission. The year started with me not able to work, but now I am back full speed ahead and loving it.
Writing this blog for myself, and anyone who wanted to read along, was a conduit to this transformation. Understanding my feelings, emotions, and how they drive me, was a piece of learning I did this year. It’s still a work in progress, but I can honestly say I know myself better now than I did on January 3, 2020 when I stopped working.
I feel energized to live my life to the fullest. Every day is still a challenge in many ways. But I live those days without chronic pain. With energy. And with a renewed and refreshed spirit. This makes the daily challenges a little easier to bear.
I hope you can find something from 2020 to positively reflect upon. Or perhaps it will take a few years for all of us to truly see the impact this year has made.
Wherever you are my friends, I wish you and your circle a wonderful holiday season. Be kind to yourself. Be kind to each other. Kindness is a powerful tool.
Having a ‘stool sample test’ isn’t that hard. It’s not invasive. You don’t have to drink anything. It’s gross, yes. But overall, compared to the rest of the tests that Doctors make us do? It’s great. But it can also get complicated.
I was sent a requisition for a stool test from my doctor. Due to covid, nothing is simple anymore. I couldn’t just go to the clinic right away. I had to get an appointment. After waiting for weeks, I went to my appointment where I was given a bottle and instructions. Once they gave me the bottle, I had to go home and try to time my sample collection to fit within their guidelines. That is, I had to have my bottle returned, filled, less than 24 hours after the ‘sample’ was taken, on a Monday, Tuesday, Wednesday or Thursday before 330PM.
After a few weeks of bad timing, finally I had a Sunday evening event and procured the illusive sample. And then I unfortunately had to store it in the fridge with the goal of dropping it off to the clinic first thing Monday morning. A warning to the family was required to protect the cargo, and to protect them as well.
My understanding was you just drop the sample off. So, considering our morning routines with work and parenting obligations, I asked my husband to drop it off for me on his way to work.
My husband is a good man. He does everything and anything for me. Someday I may write about the experience he had in college when he was shopping for my female hygiene products. He really is a good sport.
But the look on his face when I asked him to transport and deliver my sample told me I may have finally asked for too much. I made sure to disguise the packaging…. but he was not confident in the task.
Long story short, he agreed. Reluctantly. He quizzed me on the process of drop off and I assured him it was a simple thing..
Turns out I was wrong.
He arrived at the clinic and the first obstacle was covid screening. Then he had to wait in line, all the while holding my sample in a plastic bag. I’m sure he was willing himself not to think about what he was carrying. I can envision his face….. Unfortunately when he finally got to the registrar he was asked to open the bag and remove the requisition so the sample could be registered. When he did this, the only paper they had placed in the sample bag were the instructions and not the requisition. As a result, he was turned away.
So my husband had to return to his truck to go on to work….. with my unfortunate sample sitting next to him on the seat.
We devised a plan and on my break I retrieved the package and went to the clinic with the requisition. I was screened due to covid. I had to register. But the registrar was not able to take my package, there was another step…. I had to wait for a technician to call me in. A few minutes later I was sitting in a room with the technician as the bottle and it’s contents were reviewed.
All I could think as I was with the technician, was that my poor husband would not have been very pleased if he had to finish the drop off process. It was embarrassing enough for me, and it was my sample… luckily all is well that ends well. The sample was submitted within 24 hours of procurement. And my husband and I both made it to work on time. Although I don’t think he will ever say yes to such a request again.
Sometimes it is just about joy. Sometimes we can suspend disbelief and really focus on what is good and true. Sometimes one really good day can almost erase weeks or months of sad days.
Today is one of those days.
I had started a blog post yesterday where I was going to talk about prepping for my post-op colonoscopy which was scheduled for today. I’ll admit, the post was mainly negative, as I really detest drinking the prep to clean out my bowels. It was bringing me down as I wrote it, so I stopped. That’s one small piece of my new journey…. eliminating as much sad or negative influences I can from my life. I’ve had it hard enough this year, no need to make it harder.
I’m so glad I stopped that post because today is a day to celebrate.
I have reached the illusive milestone us crohnies call REMISSION!
Remission simply means your disease is not active. There are no signs of active inflammation. You feel good, your blood work is good, and your various other tests are good. But you don’t really know for sure, until you have your colonoscopy.
Today I had my post-operative colonoscopy. And I was told by my gastro-intestinal (GI) specialist that there are no signs of active inflammation. And he confirmed that I am, in fact, in remission again!
Remission was a pipe dream! A vague hope that whispered in the back of my head for the last few years. I have had periods of remission before, and historically my body responds well to new meds and leads to remission. This time wasn’t quite the same due to my stricture and so my new medication, Stellara, didn’t get a chance to work.
In the last four months since surgery, where the inflamed and damaged portion of my bowel was removed, I have steadily been feeling better. But it was only these last two months that I felt I had a shot at remission.
And now it’s here.
After the long months and years of chronic pain, of fighting every day just to survive, I am now in this miraculous world of remission.
I feel like I am floating. It is a little hard to accept but I am so happy to be here.
Remission is not a cure. I still have Crohn’s disease. But it is not currently active. This means I am functioning as close to ‘normal’ as I can be while still living with a chronic illness. It will most likely not last forever. But even while in remission I will still need monthly injections of my biologic medication, visits with my GI twice a year, regular colonoscopies, bloodwork every three months, I’ll continue to live with the impact of a shortened bowel and scar tissue build up, and I am still immunosuppressed. This continues as a maintenance treatment plan so we can hopefully catch any future flare-ups before they get really bad.
But I am well right now and I’m going to enjoy every single day of wellness I get.
Living everyday to its fullest has been my mantra since I was diagnosed 22 years ago. And now I am committed to this ideal even more.
Good things can happen. Fighting is worth it. Today is a joyful day and I am so grateful.
And just when we thought 2020 was the worse year ever, a four year old mistake is corrected and the world joins in a collective sigh of relief.
I am not a resident but I am a member of the global population. I enjoy my rights and freedoms and those of my fellow travellers. For the last four years I felt those hard-won rights were in jeopardy. But now I feel relief.
Maybe less people will feel fear when they wake up tomorrow and plan their futures, walk into stores, and make choices about their own bodies.
This relief I feel is now transitioning into hope.
Hope is what drives us, deep down. If you have no hope, how do you keep going.
My own experience with 2020 was a challenging one. But I always had a spark of hope and a search for joy. It was hard to keep going despite the many challenges, but I did. We did.
I trust we all can feel a bit more hope now. I hope we can start counting the joy in our lives as we move forward united.
I am not usually political. But this was never about politics to me. It was about humanity. I felt human rights were in jeopardy. I feel I was right to be concerned. But now, the door has opened to hope.
Hope for a bright future.
Hope that we can conquer this pandemic.
Hope that we can be our true selves without judgement or abuse.
Hope that we can recognize the lack of equality for many, and work to correct it.
Hope that we can trust in this news and enjoy our freedoms once again.
Hope that with love, joy and honest humility, the world can move forward a little more united.
November 3, 2020. Ten months ago today was my first day off work due to illness. Today is also the day I received my full clearance to return to regular hours.
Today is also my last sick-leave afternoon with my puppy who has been by my side every step of the way.
Lily has been my comfort animal, my living heating pad, my right-hand girl, my confidant.
Over the last seven weeks during easeback I have still had my afternoons with her. Whether resting or walking, she’s there.
Now she will have to adjust to the long work day alone again.
So today I’m giving extra cuddles and thanking her for the amazing support she has given me. How do you show a dog how much they mean to you? Treats? Cuddles? It seems impossible. But I’m going to try.
I was having some symptoms for a few days, and blaming them on Crohn’s disease. Diarrhea, complete fatigue, nausea, dizziness.
But then I started coughing and sneezing and my chest was tight and painful.
I am immunosuppressed due to my Stellara treatment for Crohn’s disease, and I have to be extra careful. Also, I knew I didn’t want to be coughing and sneezing all over my coworkers. Not a good idea for many reasons. But I really did not want to miss easeback shifts.
So I went online and did the self screening. It told me to call 911…. I knew I didn’t need an ambulance so I called 811 instead, our local health line for covid related questions.
I was passed to a nurse on the line very quickly and was directed by the nurse to self-isolate, get the covid test, and if negative, I could return to normal activity once I was 24 hour symptom free.
I had the test two hours later. Yuck. It’s not a fun test but it was my third time so I went in knowing what to expect. The sinus burn and tears and throat irritation went along nicely with my cold/flu symptoms. Kidding, it was gross.
Last night I slept a solid 11 hours. This bug is really kicking my butt.
I got my results this morning. Super fast and luckily, negative! I don’t have covid. Whew.
But I’m still sick and still can’t leave my house……
I hope to be able to work from home but if not, my easeback to work is now interrupted. On the plus side, I am resting more than I would if I wasn’t directed to isolate so that may mean a quicker recovery for me.
These are different times we live in. I am definitely well enough to work, but I can’t risk exposing others to my germs. It’s a community effort now, we have to work together to reduce covid and any contagions. I feel good for taking the correct steps, even if it is inconvenient in my life. I hope you all do the same. The less colds, flus and spread of germs the better.
We spend a lot of time trying to teach and guide our teenager to live a life of balance.
But it is a hard lesson for us as well, as adults, who have our education and family life ‘all figured out.’
So how can we expect it to be an easy lesson for our children with their developing brains and the influx of messages on social media?
We didn’t have those influences as kids growing up, those perfect pictures to see everyday online. We know, as adults, that a picture of joy doesn’t mean an absence of sadness.
But our children don’t know that yet.
We had teen magazines, MUCH music, and the guidance of friends … but no one knew they missed a party or were not invited somewhere, because there was no social media. It was just word of mouth. And in that environment, we were still challenged in bringing balance to ourselves.
So how do we teach our youth to understand that life requires balance in the current social climate? A climate where basic human rights are being challenged just south of our borders and the leaders on television don’t seem to understand the term ‘balance’ in the slightest?
We have to balance our work and play, happiness and sadness, freedom and consequences, obligations and choices.
At 43 I am trying very hard to find this balance. A balance of parenting and freedom. Of support and discipline. Of love and anger. And of course, of sadness and joy.
In the end we just keep trying. We can’t stop trying. Parenting is a life long venture. Nothing is ever the same once you commit to a young one.
When we played on the teeter totter as children we knew if one side was heavier, the other side could fall off, get hurt, or be stuck up high with no way to escape.
It’s as simple as that. If we find ourselves in the midst of a heavy situation, we have to look for ways to lighten the load. This could be with breathing, walking, exercising, talking, working, playing and using any creative outlet we thrive in. Whatever works for each of us.
Balance, the new goal for my life. As I progress in my return to work I am trying, with difficulty, to maintain my self-care without pushing myself too far too fast. It’s a work in progress. Just as our children are growing and learning each day, so am I.
I know it’s hard right now. I mean, I don’t really know, but I can imagine, I can see your pain, your worry, your confusion.
It’s hard to know what to do. It’s hard to make a decision.
But right now, in the moment, you don’t have to. You can just be here with me, with the silence, and the absence of pressure.
This is a safe space for you to sit, smile, cry, laugh, scream, zone off into your thoughts, or talk a mile a minute.
I promise you no judgement, no pressure, no unsolicited advice.
I see you. I hear you. I love you.
Don’t beat yourself up. You are one human, one soul, one person. This world has so many challenges we never thought we could face, but yet we do.
Sometimes we feel like no one else would ever understand. But I guarantee someone would. Even if we have never experienced the same pain, the same decisions, the same tragedies…. we all share our humanity. We all have an inner voice that sometimes beats us up. Makes us feel low or less than. We are not those thoughts.
You are wonderful, beautiful, and perfect just as you are. But you are also human and with humanity comes that element of imperfection that just adds to our vulnerability and beauty.
Like a photo developing but the lights come on too suddenly
Or when a car is driving toward you with blinding headlights on a dark highway
It is a shock to feel so vulnerable
I’m not sure I’ll meet the goal, it’s so hard to see it clearly
The goal to fully develop back into daily life
When my tears come so easily and peoples faces sometimes intimidate me
I want to hide because if I don’t, they will see
They will see my skin is on inside out, and I have no way to protect myself
They will see the exposed underdeveloped photo and they won’t recognize me
I won’t be able to maintain the eye contact, and talk confidently as I use to do so easily
I have to take the time I need to develop
To not be afraid of the lights and faces and questions
To breathe and hope those I talk to actually hear me, and won’t talk about my faults and weaknesses with others
Hope that I am in a safe space, even though it feels too bright, blindingly so
So I can rebuild that hardy skin, that strong outer self, that use to be me
Before my resilience was tested and my spirit drained
But once I break free of these chains of exposure, and fully develop, I doubt I’ll find I am the same old me…
I may find a stronger, better self, with a tough skin and an empathetic heart
Stay safe everyone
* This is something I wrote during my first two weeks back to work. I am now feeling much more confident and ready to tackle the challenges ahead. But when I first wrote this, I couldn’t post it because in that moment I wasn’t sure I’d surpass those feelings. But luckily, I have. We all have that strength inside us, sometimes it just takes a while to find it and pull from it. 💜
I have been working my ease back for four weeks. 28 days. Amazing how that just flew by.
Tomorrow I make a plan for the next steps. I hope I can increase hours and duties and, once done, I can tolerate it.
For the last four weeks I’ve been trying to give back. I’ve had celebrations and took care of those around me.
It has not been easy. No. But it’s been so amazing to be tired because I was so busy, active and social, rather than inflamed, in pain and miserable.
These four weeks have not all been perfect, far from it. But I have achieved my objectives despite being hurt, discouraged, angry, and sad. Life will bring all of that to each of us, I guess it’s about how we cope with it, and learn to move through it, move on from it, and keep our eye on the goal.
The goal for me is still the same as always, to find the joy amongst the sadness.
Happy thanksgiving to my readers. I know many of you are living through your own struggles and periods of sadness. I hope you can look for the joy despite it. It’s a process I’m still working on, but so far it hasn’t let me down.
Today is the 257th day I have been off work due to Crohn’s disease.
Before this year I have never needed this amount of time off work.
In university, when I was first diagnosed, I missed a couple semesters. But I wasn’t working and it was all new and very severe at the time. That was 22 years ago.
But 257? That’s quite a number.
Imagine waking up 257 times with the knowledge you cannot do what you want to do that day. Unsure what the next day may hold. Unsure if day 258 will be as positive and productive as you hope it will be.
Of those 257 days, about 169 were due to delays out of my control.
The storm of the century.
A surgeon’s personal injury and then personal leave.
Things beyond my imagination. Beyond anyone’s.
A surgery that should have occurred February 3, 2020, actually occurred July 7, 2020. The five months in between were pain filled and miserable but they are now over. I have fought the battle and I hope I have won.
I can’t put a number on the phone calls made to healthcare providers begging for help. I can’t put a number on the amount of caring and kindness my support network provided. I can’t put a number on how I am feeling today, knowing I return to work for ease back tomorrow.
I know my appreciation is well beyond 257. I know the texts and calls and video chats and visits and gifts are well beyond 257. I also know my pain is now a low number, no longer 14/10. No longer 10/10. It’s not even registering on the scale most days.
I have some work left to do. I continue to build my endurance walking almost daily, if not twice a day. I monitor my body for any signs of issues and some days, I admit, I am pretty wiped out. Some days the pain comes back. But it’s not every day. It’s not every week. It’s not all day long.
I am almost back to my old normal.
Thank you everyone for your never wavering support.
I will try to repay it 257 times.
I am so glad I can stop tallying the days off, and now start tallying the days back to life and work and routine.
The blog started as a way to get my thoughts out. My feelings out. To relieve some anguish and share the load.
It snowballed into story telling, advocacy, and awareness promotion.
A few times I almost deleted it. A few times I almost gave up.
But I didn’t.
So here is post 101! I don’t have much to say other than THANK YOU to my followers, my readers. And THANK YOU to the doctors and nurses who do wonderful work within a difficult system. Your individual efforts amaze me and led me to this day…. a day when I feel like I have a future. Where I am not blinded by chronic pain.
My family and I celebrate Christmas. The feeling of Christmas morning is unique and is best described as pure joy, excitement and happiness.
This is not for everyone, and certainly not during years when families experience loss and are mourning. But in general, memories of Christmas mornings are positive and bring a smile to my face.
You work hard to prepare things like foods, gifts, the house, your tree. Hopefully you are with your loved ones. There is a smell and a presence of something intangible. It can be hard to describe. Anyone else who celebrates this holiday and loves it like we do, will be able to grasp this. Perhaps other holidays and events give others the same feeling.
Joy. Excitement. Happiness.
That’s how every morning feels to me lately. Like a perpetual Christmas morning.
The food? Anything I want to eat within reason. I have three meals a day. I drink and eat without pain. A gift like nothing else.
The smell? Toast or coffee, summer freshness, scented candles, peppermint in my diffuser.
The house? Filled with happy pets and people, cards from loved ones and treats from so many well wishers.
The gift? Health. It is the absence of chronic pain. It is the promise of a new day, and a bright future. It is the end of the months of struggle. It is the empowerment I now feel as I no longer wait on strangers in a slow healthcare system to give me the surgery I need. I no longer depend on a phone call to change my life. I can change it myself. I can write. I can eat. I can smile without effort.
In chatting with my friend the other night she told me how powerful my blog is and how powerful my story is as well. She suggested I write about what it felt like for me the last eight months. I asked, ‘you mean, what it feels like to be discarded?’ And she emphatically said ‘yes!’
Let me explain. At no time did I feel unloved or unsupported by those closest to me. In fact, quite the opposite. I feel like those who really cared about me, made that known. They maintained contact with me no matter what stage of this illness I was in.
But society, healthcare, and government did not give me the support a patient in my situation needed.
I am a 43 year old professional. I have worked my whole life, all while having Crohn’s disease. I have only missed work once before due to Crohn’s disease and that was a decade ago. I have always maintained a focus on my health care, maintenance and ongoing treatment for my chronic illness. When I lived on the mainland, the specialist was always available and involved. She never let me go one year without a colonoscopy due to my high risk of bowel cancer, narrowing and/or obstruction. My mainland community ensured a financial package for me each time I travelled for treatment including ensuring my spouse was my medical escort. I never felt abandoned. Flare ups were dealt with immediately.
Living in Newfoundland is a completely different experience. Perhaps it isn’t Newfoundland. Maybe it’s my age? Maybe the older you get the less attention and care you receive? I have noticed doctors now say you are ‘relatively young’ instead of ‘you are young’ when discussing my care now. Maybe once you hit 40 you have less value for the doctors? Maybe they don’t like playing against the stats? I guess when my next flare up happens, and I’m hopefully much older again, I will be able to delve into that topic a little further. But needless to say, I do not feel the system in this province has helped me as expediently as the mainland system would have… and honestly many of the healthcare providers just seem to be forgetting that an individual with a heart, mind, soul, family, friends, plans for the future, goals for their career, is sitting in front of them.
I spent two years trying to get the attention and help I needed due to this flare up. I kept facing delays which were not of my own doing. Referrals not sent. Appointments taking six months. No one checking in. No one making treatment changes. In fact at one point as I sat in an appointment I said ‘do we have to wait another few months for another test or can we start changing my treatment now? Maybe increase humira or something.’ I’m not sure this is my role but I guess advocating for yourself really is the only way to navigate this system. Funny thing, we increased my humira that day.
When I finally saw the surgeon about three years into this flare, she changed my life by validating all of my experiences. She explained why I had so much pain. She explained my bowel movements and how they are impacted by the stricture. After three years I felt hopeful.
But I have never heard from her since and that was eight months ago.
Finally I heard from a surgeon who was filling in for her near the end of May. I told this new surgeon, the one who would eventually complete my surgery, that hers was the first phone call I had received since the December 5, 2019 appointment with the first surgeon. That is about five months.
What happened in those five months? I worsened. I had to stop working. I had to take care of my overall health. I was down, sad, lonely and to be honest, I felt like I was discarded. It impacted me, my family, and my friends. It impacted my future.
At one point I wrote a letter to our minister of health. It looked like he read it based on the read receipt I got. But the next time I wrote, to let him know I didn’t need his help anymore, there was an auto-reply in place redirecting me elsewhere. I guess since 6000 people were waiting for surgery he couldn’t get back to everyone. Still, to get no reply despite his reading my letter was also discouraging.
Writing to the minister of health was my last ditch effort at self-advocacy. Writing in this blog even started to wear on me as the months rolled on but my health deteriorated. I was at risk of a total loss of mental and physical health. But yet no one seemed to be doing anything to help.
I will make note that my family doctor was always amazing and supportive and helpful. But his hands were tied once we start moving into specialists, surgeons, biologic medications, covid, etc. There was only so much he could do to help me fight this system. But he did provide me with ongoing support for my overall health. He was the only bright light.
I called every week about my surgery and got nothing in return. I called and called. No one ever called me.
As time went on I realized I didn’t matter to any of my healthcare providers. I was simply a number. And due to a variety of fluke things that occurred in 2020, the province basically told me and everyone like me, to just keep living in pain. They told me that the pandemic was all they could focus on at once. That they were not able to keep one or two operating rooms open for those suffering daily. That any losses from other health issues was acceptable and expected and it didn’t matter.
This tells me covid, and the provinces response to it, has likely led to many deaths. Deaths of people who never had the virus. Deaths due to feeling discarded, and being unable to bear to face each day of pain and loneliness and abandonment by their province.
I feel it. I know it. I wish I could hug those victims of the pandemic and tell them they are not alone. That if they are discarded, there are many in the same boat. I wish somehow to band together with them as I know what it feels like.
There’s a hole in my belly, dear Lily, dear Lily, there’s a hole in my belly, dear Lily, a hole.
Day ten post-op came with its ups and downs.
On the plus side? I got my 33 staples out. I was so excited. It felt so much more comfortable. I was afraid to get up off the exam table as I was worried it would come apart, especially the larger middle incision. The nurse told me it was possible but unlikely. She covered my wounds with steri-strips and gave me my instructions. It was like freedom!
Also on the plus side, one of my sweet friends were back from holidays and came to see me! Oh I missed her so much and I was so excited to have a visitor. In fact, despite being a non-hugger, when I saw her I asked for a hug. This is when the story gets messy.
I was laying on my recliner and she leaned down to hug me, leaving about a foot of space between my tummy wound and her jacket.
The one foot of space was the perfect spot for my puppy Lily to go and try to lick and sniff our new visitor. So perfect, she ran in, and her paw went right on my incision. And yes, she busted my newly healed incision open in the middle.
I knew it hurt, and shooed her away, but it wasn’t until the liquid started pouring out of the wound did I realize she had caused the newly healed skin to come apart in a hole that was about 5 to 10 millimetres in diameter.
The fluid kept coming out. It was yellow and clear. I started to get very anxious and panic was on the horizon.
The family and friends around me assured me it was okay, it was normal. I felt it wasn’t normal because of how it felt when my prescious ten pound dog poked her boney little leg into my wound.
I called a friend who is also a nurse and she came right away with her bag of sterilized items.
She confirmed the dog had in fact broken open my wound causing a hole. It was not normal, but also not abnormal for a wound to come open. She explained the fluid was the bodies way of healing inside and when the wound broke, this fluid poured out instead of being reabsorbed.
She bandaged me up and told me to call the local community health nurse to be seen on Monday. She reassured me and told me I would heal fine.
So I called. And I left an embarrassingly long message.
The next morning, on a Saturday, a nurse called and booked me for Sunday. I was so relieved. She explained she had popped into the office and heard my message and couldn’t leave me until Monday.
Since then, I have been seeing the nurse every two to three days. Each day a different nurse. Most nurses already heard the infamous story of a tiny dog tearing open my wound.
I don’t like to do things the easy way, that’s for sure.
So today I went for what was my umpteeth visit and was told it is almost ready to be bandage free! I may only have one or two visits left. And once it heals? I can have baths and walk in the water. Oh how I wish I could walk in the water today ….
There’s a hole in my belly, dear Lily dear Lily, there’s a hole in my belly, dear Lily a hole.
I want to start by saying, I am happy and joyous and feeling well. But boy oh boy, am I happy for this rain today.
During the last couple years I was living a shell of a life, only partially there, pushing through the pain, feeling helpless and hopeless. I fought hard. Every day I had to work to smile and communicate and complete any task. But I was never ever bored. I was too busy fighting.
Since surgery? I am regularly bored. But it’s not a complaint! I swear it isn’t.
It may be because I am not distracted by constant, agonizing, ongoing pain. I am not struggling to do everything. I am recovering from major surgery, and so I have acute pain, I have lack of mobility, strength, and I am under doctors restrictions. But all of that is temporary and it is not agonizing chronic pain. It is not sickness. It is not nausea.
So now I feel better, in general, but I am not allowed to do anything. My partner works, my teenager is out with friends, and the weather is amazing. Almost every day seems warm and sunny and full of promise and adventure.
But you will find me on my deck sunning or attempting to read, or cuddling my dog. I can’t swim or bike or hike or camp. These are the things I always do in summer. I’m what you might call a water dog…. always in a pond or river or ocean.
But again I’m not complaining! If I was sick, I wouldn’t be bored. I will take bored any day! It means I have the capacity to think straight, I am not distracted by pain, and my only restriction is from a doctor, or my surgical wounds, not my overall health.
Today it’s raining and I’m kind of happy about that. I get to lay around and do rainy day things. I can watch tv or play games or talk on the phone or read or colour…. and not daydream about swimming and hiking.
I am so excited to start living again. I know I will always have Crohn’s disease and some symptoms, but right now I don’t feel like Crohn’s has me. I feel like I’m growing mentally and physically stronger daily.
And soon enough, I will be too busy to be bored.
So I’ll take it. I’ll take the boredom any day. Being bored is a good thing. It is a sign of health. It is a privilege to be bored. As such, I respect it.
I loved ER years before I watched Greys Anatomy. I loved that show so much. My partner and I would watch it every Thursday night.
My recent ER experience was not so lovely. It was, however, dramatic, shocking, and it felt like 15 seasons of emotional rollercoasters.
After a slowly progressing three year flare-up of Crohn’s disease, leading to a severe stricture and loss of most of my function, I finally had my resection surgery on July 7, 2020. 2020 is a year many of us would like to put behind us. It’s a year that keeps on giving…. but not in a good way.
I was expecting discharge after surgery to occur on the following Sunday or Monday. But as I was doing so well, I was discharged on Saturday. It was exciting! I was so happy. But hindsight is 2020 too, and I guess I should have stayed two more days.
Sunday was amazing! I had 13 visitors, felt great despite the pain, and all was good with the world.
Monday was another story.
When I was discharged on Saturday I had not yet met the one requirement everyone has to meet after bowel surgery: I had not produced a bowel movement. With a bowel surgery the expectation is a bowel movement must occur before discharge, but I was doing so well, eating, drinking, producing gas, and my pain was well controlled, that the surgeon felt I could go home. Also, with Crohn’s disease, my bowel has a mind of its own and she knew it might take a little longer for the bowel to respond.
Everyone I told was shocked that I was allowed out early. But it is the time of Covid and beds are a premium. Plus, everyone said I looked so good, even when my hubbie and I would go for my walks they didn’t know who was the patient and who was the visitor. (Chuckle)
I think looking good is directly related to the surgeries ability to erase my chronic pain. I gained an acute pain, yes, but the severe gut pain was gone. It lifted my eyes and my spirits.
So on Monday I awoke ok, but steadily began to feel pain in my lower abdominal area. I knew I needed to move my bowels because it was now 6 days post-op. But I had no urge to go. The pain came in waves and didn’t stop. It was a 5/10 pain all day but 10/10 when the spasms would hit. It was a severe level of pain that made me think if I didn’t move my bowels soon, my sutures would rip inside.
I thought some stool softener would be okay but the surgeon had told me not to use it. I spoke with a community health nurse that day about wound management and told her my pain experience and lack of bowel movement. She advised me to call 811, the local emergency nurse. I called 811 and they told me to call my surgeon and if no contact or direction to go to ER within four hours. Both nurses I spoke with would not and could not approve stool softeners for someone post-op.
I called my surgeon and my feedback was to go to ER.
So I went.
My partner and I arrived around 6pm or so. I finally saw the surgical resident at 11pm and was admitted at 1am after xrays, blood work, a new covid test, and an order for a CT scan.
During the 7 hours in between, we were expected to sit upright on very uncomfortable ER room chairs. I begged the nurses to let me wait outside in the truck so I could recline. They told me no, but I did go out twice to try and relieve the acute pain in my sutures and close my eyes to rest. Again, I was only 6 days post-op, two days since discharge. I was very weak and vulnerable.
The ER was full to capacity that night. People were waiting since 1pm that day. Ambulances were being redirected to my hospital from the larger metro hospital due to capacity issues. There were no beds for patients to lay on. There was a senior citizen with a broken shoulder sitting for hours and hours with no attention or X-ray or medical care. There was a man with broken ribs, a man with heart palpitations, a woman with a severe facial infection, multiple animal bites, large wounds needing stitching, and a woman with ongoing panic and anxiety attacks leading her to be unable to wait with the group. It was standing room only.
Every so often the nurse would call out everyone’s names. We all got to know each other in this small room. No one was able to physically distance as per covid rules due to the capacity of the room and number of patients.
Everyone was wearing masks. The other patients were shocked I was made to wait. My spouse was helping me get from standing to sitting and vice versa. The pain and exhaustion was overtaking us all. By the end my spouse was convinced the trip to the ER was actually delaying my recovery by about a week.
The group in the waiting room were getting closer as the night wore on and we started telling jokes that were a bit inappropriate but honestly, that laughter was what gave me life and the energy to keep waiting! I can’t repeat the jokes here but needless to say all hands were laughing.
After about five hours a new nurse came out to call names. As she walked around she chastised us for not physically distancing. This is after five hours of mingling and laughing and sharing physical space. One woman was sitting next to another woman and was told to get up and move. She looked frantically for a chair with no ‘Covid’ warning tape and came and sat right next to me. The whole room erupted with laughter as the nurse shook her head and said ‘how does that make sense, you are right next to this lady now!’ Later the same woman was drinking water and going around with her mask up in order to drink. We all laughed. I think we were all delirious.
At 1am when I had my bed, my husband changed me into a hospital nightie and tucked me in bed. The nurses let him stay with me. The nurses all remembered me from two days earlier. My husband then held my hand until I fell asleep. When I awoke at 6am he was gone. He really is my angel.
The outcome of my admission? They gave me a solution to drink for the CT scan and it increased bowel motility and I was able to use the washroom. I lost 5 lbs within the next 24 hours. When the surgeon came to give me the CT scan results, and suggested I stay another night, I said ‘I just wanted permission to take stool softeners, and look at me! I really would like to go home if that’s ok.’
I was discharged with stool softeners and a plan to return if the pain worsened. However once the bowel was working the pain went away. I believe the spasmic pain was the lower bowel trying to move the stool but it was kind of ‘stuck’ in the upper bowel. The solution I drank helped my upper bowel wake up and get on board with the plan. Once the areas of my bowel were doing the same job, the pain ceased. Since that night, the pain has not returned.
The moral of the story? Ensure you do your poopoo before you leave the hospital after a major bowel surgery. It can help you avoid waiting seven hours just to be readmitted a day later.
I really hope my fellow patients are all okay. If this article happens to be read by any of you, please know you helped make my wait a bit more bearable. I appreciate you all.
Surgery has happened. Its day nine post-op. They removed 15 cm of large bowel. I have been walking, eating, and passing gas. There was a hiccup on day 7 post-op, as I still wasn’t passing stool and I developed a severe spasm and lower abdominal pain. I was readmitted to hospital, but I was out again in 24 hours after a ct scan and a successful passage of stool.
I have had my dressings changed a couple times and staples come out tomorrow. I have four laparoscopic camera sites and one larger site above my belly button. The surgeon also corrected my congenital umbilical hernia while she fixed up my bowel. So I did get my two-for-one surgery I was hoping for (but not the tummy tuck I had requested). There are ten staples for the four laparoscopic sites, and 23 in the larger central incision, for 33 total.
I have had visitors and calls and texts and video chats. I have my parents here with me, helping me so very much. I can’t lift my darling pets, but they cuddle me anyway.
My current struggle is nausea. Each morning I can barely stomach the idea of food but food is an essential part of my recovery so we keep trying. Recently egg salad sandwiches have become my passion.
One of the oddest development is my love-hate relationship with coffee. When I first started drinking liquids after surgery, coffee was my favourite of all. I had coffees delivered. I drank coffee with every meal. It was so amazingly good. Since my return to hospital, and return home again, coffee is now my nemesis. I can’t bear to smell it, let alone drink it. I am such a coffee lover! Coffee was my only comfort food for the last couple years that never let me down and gave me energy despite not eating. Now that I can’t have it, I’m struggling to find a suitable replacement in the morning. I only hope my stomach gets stronger as I heal and I will relearn my love.
Pain from the incisions is bearable. I can move around really well now compared to my first day at home on Saturday. I couldn’t put on my pants or get into bed without help. Now I am self sufficient.
My house is filled with purple flowers. My phone is filled with loved ones and their purple selfies. My heart is filled with appreciation for the many people in my life who are there for me. I really feel unworthy of such love and kindness. It is something I will never forget.
Chicken soup, muffins, tea buns, games, cards, money, flowers, visits, decorations, balloons, ribbons, plants, artwork, phone calls, colouring books, messages, texts, snaps, pictures, comments, and time. These are just some of the gifts I receive and appreciate. I don’t know if I can ever repay it. So I guess I’ll keep writing and appreciating the love. The love and thoughtfulness.
I think I’m going to be a different person now. I can feel a change happening. My anger is gone. My sadness as well. Even when I’m nauseous and can’t eat I just see it as a part of healing and my hope keeps me smiling. As soon as I got my call with my surgery date, I felt the change happening. I am just so happy. So hopeful. So blessed. I don’t need to look for joy in my sadness. Joy is currently my constant.
I am joyful. I am peaceful. I am content.
I look forward to healing, to returning to my life, to being the new me, with my new bowel.
In 48 hours I will be done. I will be waking up, in pain, but hopefully with a good result.
It’s hard to imagine. 48 hours is a weekend. We work hard all week for two precious days off. And they always go too fast. So the next 48 should fly too.
Yet 48 hours feels so long tonight. I feel unsettled and anxious. I’m packed. I have my purple scarf. I’ve waited six months. But 48 hours still seems long.
But it’s not. Before we know it, I’ll be updating you all on pre-op processes and on my recovery.
In the last 48 hours I have done a lot. I had a short fire with my buddy on Friday night . I had a big fire with friends and we laughed the night away on Saturday. I cuddled my family and enjoyed a lazy Sunday morning. I cooked a meal. I went shopping. I cleaned the house a little. My hubbie cleaned the house a lot. I had friends wish me well and my parents came to town to help with recovery. I had a few phone/video calls from siblings and friends.
Tomorrow is pre-op. Then covid testing. Then prepping and isolating. That should make the time fly. Then the next morning I’m going under. I will sleep that day away.
I have finally gotten good news. Surgery is set for four short days away on July 7.
Big news, I know.
I do have a suitcase mostly packed, odds and ends are left. I have a mental checklist.
I bought my gum tonight. Yep, chewing gum. Any flavour, any type, but gum is a requirement post bowel resection. It helps get the digestive system moving, sending gas in as well. So I picked up two large jars of mint gum, and a tropical one for variety.
I already bought my prep. Anyone who hasn’t had a colonoscopy may not know what prep is. It’s what you drink to help empty your bowels completely before a scope. In my case, I have to do a similar thing for bowel surgery. However the intestine is not required to be completely clear as the surgeon will be looking at it from the outside, while my specialist looks on the inside of the intestine.
For choice of prep, I prefer the combined pills and laxative. Otherwise you have to drink double the fluid and I honestly nearly vomit every time I drink that stuff. So I am relieved to be able to use my preferred prep, which had to be approved by my surgeon, and also that I don’t have to stress as much if I can’t drink everything.
I wanted to get a new cosmetic bag and a purple scarf. The bag, for obvious reasons. The scarf to wear as a patient to represent the purple ribbon for Crohn’s and colitis. So I may go shopping tomorrow.
I have family coming to help and my partner has his time off approved for next week. My teenager has stated, ‘I will step up.’ That is also promising.
My leave from work and pay is all in place.
All that’s left now is to get my pre-op done on Monday. One addition to pre-op due to recent events is a mandatory covid test along with self isolation between the test and surgery.
Everyone is so supportive and happy, I am left simply saying thank you or replying with purple heart emojis to all my well wishers.
I am happy, relieved, and excited to get going. Excited for a change really. Also excited to be able to start planning life again soon.
I am also shaken, nauseous, and ‘scatter brained’ with the news. To say it seems quick, after six months of waiting and a five month delay, would be wrong. But weirdly enough, to be called today for pre-op on Monday, was shocking. I knew it was coming but still it’s a scary thought. The idea of surgery is not appealing. But the idea of a successful outcome is everything.
So I’ll keep packing and planning, and I’ll try to finish a few little projects. I’ll rest, relax, and walk as much as possible.
Six months. That’s how long I’ve been home, waiting for the surgery that never seems to happen.
I could focus on the 180 days, the pain, the monotony, the feelings of loneliness, and the fear.
Or I could look at what I’ve learned, and what I’ve gained, during this time.
I have survived a state of emergency due to an unprecedented snow storm.
I have developed stronger more honest connections with my teenager.
So far, I am surviving a pandemic. A pandemic! Like, a global threat that is real, and not a movie. Who would have thought it?
I have developed a stronger bond with my mother through daily chats.
I have grown some friendships to the point I feel that they are like my extended family.
I have been journaling and writing in a blog, this blog, sharing my story for anyone who is interested.
I have completed a paint-by-numbers painting that now is displayed and framed, in my friend’s home.
I have raised over $1500.00 CDN in support of a Gutsy walk for a cure for Crohn’s and colitis!
I have learned a new skill in furniture recovery- and almost have a completed newly finished table and chairs.
I started, but couldn’t finish, a 3000 piece puzzle. It’s good to learn your limitations I guess.
I baked a lot, and my family and friends have gotten to try some different baked goods ‘just because.’
I have honed a passion for video chatting with friends.
I have repotted plants, gifted baby plants to friends, and started a small garden.
I have learned more, from personal experience, what my clients must feel when they can’t work due to injury.
I have searched myself through meditation, solitude, driving, walking, and being in nature, and I have found an appreciation for rest and taking things slowly.
I have fought myself many times when I thought I would quit, but I keep going. So each time I did that, I see it as a success. I won the fight against my own worse thoughts many times. The more I win, the stronger I feel.
I have swam in one pond for a short time, but I did it and if I can’t for the rest of summer that’s ok. I have taken away that worry and sadness of losing my summer to illness, by conquering it head on.
I have always appreciated my husband but the way he has supported me, and taken on almost every role in our life, has amazed me beyond measure.
I have had many bad days. I have cried. I worry for my health and my future.
But I have also grown, developed, and experienced new things in my pursuit of joy despite my sadness.
I wish I didn’t know that someone out there has been scheduled for shoulder surgery. And someone else out there has been scheduled for hernia repair.
I really wish I didn’t know.
I have been fighting being down. Trying to keep smiling, keep going, use my humour, and lean on my loved ones.
But it’s been six months. Six months of waiting. And I was told I will have surgery within 3-6 weeks. Well, it’s week six now and I haven’t had a call.
When I call to inquire and remind them I’m here, unwell and off work, waiting, needing help, experiencing partial blockages and incontinence and pain and fatigue and nausea, I’m told there is nothing they can do to help and nothing they can tell me.
In truth they did tell me the ‘process.’ They explained that each surgeon has an alottment of operating times and they are each submitting their urgent cases. So in my case, general surgery, I am on the list with other general surgeries within 3-6 weeks. An orthopaedic surgeon also gets to submit a list, for example, and that surgeon could be planning a shoulder repair as their most urgent.
So I get it. I understand it. Intellectually.
But in my heart I wish I didn’t know other surgeries were happening while I wait and wait and wait. And life is on hold. And summer plans can’t be made. My family unsure if we will see our cabin this year because of me. Because of the many many delays I have experienced and because of my failing body.
Every day I have to will myself to do things. Everything seems so pointless. I find joy in sunshine and my new chair and my recent projects around the house.
But in the end, those thoughts arise and I ask myself, ‘why me?’
It was around 1985 and I was about 8 years old. My siblings are older than me and as a result, I was the only one joining my parents boating, berry picking and cabin visiting. Along with my dog Tipsy of course.
Tipsy was a present for my sixth birthday. I remember dad coming up from the basement with his chainsaw box. He told me to open it. I did- and out popped Tipsy. It was love at first sight. His little white streak between his eyes and his light blonde fur made him the most beautiful dog in the world to me.
Tipsy loved the boat and cabin time. He chased squirrels his whole life. I sure hope he caught at least one in his 16 years.
Back to 1985, I was out with Mom and Dad and Tipsy in Big Barachois picking berries. We were staying at our cabin but boating around for the day, looking for good berry picking spots.
Dad decided he was going to pick berries up over the hill in Charlie’s Hole. His brother had a cabin there. We also knew the area from past visits.
I remember the moments that followed like it was yesterday.
Dad landed the boat in Charle’s Hole. We walked up to the dark cold path, which would lead us through the woods. The path opened up to a clearing in the forest, at the foot of a large hill where the cabin fit snuggly into the landscape. The main thing I remember about the path was picking main-tee berries. They are little white wild berries that grow on the forest floor amongst little green bushes. They taste like mint and are a treat.
The cabin looked abandoned. My dad was concerned for his brothers cabin and went to check to ensure the door was locked. When he opened the storm door, the inside door was a dark colour, which was odd as the door was not dark.
Then the door started moving. There was a sound like rustling leaves. I thought for a moment it was leaves that had somehow gotten trapped between the doors. But it was not so innocent.
Instead of dried leaves, a family of bats had taken residency in between the outer and inner doors. The darkness was not a painted door but actually hundreds of bats sleeping in their make-shift cave.
Out they flew.
In a fury.
Straight into my Dad’s face.
Dad had a berry-picking jug in his hand, and started hitting them down, one by one, to avoid them striking his face. My dog, who was always at Dad’s side, was jumping and barking and trying to catch them. I remember the sound of the beige jug hitting the bats, the dog barking, the bat wings flying erratically, and most especially, I remember the screeching.
I turn to see Mom holding my Dad’s floater coat over her head to keep the bats away. She was calling to me but I couldn’t catch her. When I looked again, she was back up to the opening of the dark trail. I was a statue, standing in the clearing to the side of the cabin absolutely terrified and enamoured with the shocking sight of hundreds of bats flying in a swarm up and out of the clearing.
I know we all eventually ran out of there and got in the boat and went to our cabin but I don’t really remember the details of the escape or the return home.
So for all my friends who know me, this is why I wear a hat and many layers at the cabin. This is why I scream when I see a bat.
To this day my first view of a bat each summer sends me into a spin but I do eventually calm down. I still continue to have fires and cabin nights and camping as a part of my life. I just make sure I always have the appropriate clothing on. Sometimes things are too important to let our fear get in the way.
Like on Mother’s Day, I reflect on the past and the many stories about the father figures in my life.
I think I have the best dad in the world. Always thought it. Always knew it. Then my husband became a father to our daughter and I realized I had picked a husband who would be an equally amazing dad.
My dad was and is always there for me. He is funny and smart and strong and creative. He taught me so much. He was always there to give me a ride or challenge me to learn a new skill. He never treated me ‘like a girl’ but like a person who could do and become anything I wanted to be. He taught me to fish and clean my catch. He taught me carpentry work. He nourished my passion for nature and appreciation for all life. He is a hunter and trapper, but never wasteful and always kind. He was a fisherman for most of his life, starting as a child with his own father. He is brave and tall and handsome. I’ve always been daddy’s girl. I always will be. My dad is a cool grandfather and great grandfather and all the kids love him and want to learn from him. He has a neverending curiosity about the world and there is nothing he doesn’t understand.
Then along comes my amazing husband. He was raised by his grandparents. I wish I could have met his grandparents. In particular today I think of his grandfather, who my daughter lovingly calls Poppy Reggie. It’s amazing to miss someone who you haven’t met. I know his teachings, and his guidance, made my partner the man he is today. My husband also has a step father who always treated him with love and kindness and who has now gone on to be a wonderful poppy to our daughter.
My husband and I adopted our daughter when she was two. He never doubted, never questioned, he just jumped right into fatherhood, eyes wide open, and has excelled in that role more than anything he has ever done in his life (and he excels in many other ways as well…). Our daughter is a self-professed daddy’s girl. I understand it. I’m one too. And my daughter and I have one big thing in common, we have the best dads in the world.
My husband thinks of us first, of our daughter first. He teaches, guides, laughs, helps, supports, and provides. He spoils both of us and he loves us more than anything. Of this I have no doubt.
There are many less positive stories I could also tell on Father’s Day, of absent or abusive and neglectful men, but I choose not to. I will focus on my dad, my husband, and the amazing lives they lead. Leading us forward. Showing us kindness. Celebrating joyous moments and crying with us in sad moments. Sitting by my bedside when I was near death due to Crohn’s. Both of them. Bonding and caring and loving.
I am blessed beyond measure.
Happy Father’s Day to all the men out there who help others, care for children, teach others, respect women, and who lead by example. Most especially Happy Father’s Day to my dad and my hubbie. Xoxo
When the next steps in front of you no longer seem too hard.
When focusing on self talk, communication, rest, and action leads you to a fresh outlook- it’s an example that deciding to keep going is always the right decision.
Yesterday it all felt impossible.
Today I feel things are much more possible.
I held on. I planned. I ensured I had a safety net. I reached out. I acted on objective things. I spent time in the sun. I stayed home. I rested. I spoke with friends and co-workers.
I spoke to my mom and I realized I really missed our chats. Even when she scolded me for cursing. Because that led to a good laugh between us. Then I jokingly scolded my teenager and her friends for their language. Interesting how that happens. That also made me smile.
I smiled at the surreal feeling of time passing, generational similarities and differences, and the blessing of aging. The wonderful feeling of being older, wiser, and loved.
I spent family time. Alone time. Hubbie time. Daughter time. We went driving, listening to music and site seeing with the teenagers. Just taking pictures and acting silly. Singing loudly in the car. Windows down. Arms out. In the rare warm weather.
Above all, I was gentle with myself. All day long. I gave myself permission to avoid internal pressures today.
If anything I hope this can be an example of the importance of communication, action, kindness, self-compassion and love in a very empty moment. Because we never know how good the next moment may be.
Soon I should get the surgery and start mending. But at what cost? At losing my work ability and bodily functions for six months or more, knowing I could be well by now. It’s hard not to sound bitter. It’s hard to have small talk when everything is hazy and coloured by bitterness and my daily struggle.
I’ve grown tired of the bright things. My blog, nature, games, talking, texting, walking, driving. I remind myself I like these things. I remind myself to do these things. To stay connected.
But still I struggle to understand why I should bother anymore.
It seems easier to stay in bed. To cover my head.
At this point who would miss me? No one sees me. I don’t work. My child has her own life. My husband too.
Tomorrow I will call and try to get some answers about my ongoing wait for surgery. But calling now is also a struggle. I wish someone would call for me. I’m tired. The idea of being given more bad news or lack of news or disregard for my situation by another random voice on the phone may be too much for me to bear.
But I’ll call. I’ll get up each day. I’ll do what I can. I’ll rest. I’ll keep waiting. I really have no choice. I can’t escape my body. Even winning the lotto doesn’t matter to me anymore- it doesn’t come with a cure for Crohn’s disease.
So for tonight I’ll keep going, and keep struggling, and I’ll also keep looking for joy in my sadness.
If you drove by my house today, you may have seen me in the garden, mowing the lawn and tending to the plants.
But you didn’t see me skipping parts of the job, because I was so weak. I only weeded around a few precious plants because to weed everything would take too much energy. I didn’t lay down the mulch even though it’s one of my favourite things to do, because I would have to expend too much energy.
If you drove by me today as I was driving in the car with my puppy, you saw my smiling face, my silly dog, and my active life.
You didn’t see the reason for my drive. That I need to get out but can only walk so much. That I’m driving because I have to go to a trail within my level of strength. You didn’t see me come back home, exhausted, and having to rush to the bathroom and then my bed to rest.
If you saw me at the grocery store, you saw me chatty and happy to see you, and excited to be out and about.
You didn’t see the pain of an attack that happens while I’m in one of those extra long line ups or the many times I tried to go to the store and couldn’t. You didn’t see me get my family to empty the car, lug the groceries in, clean it and put it away because a trip to the store takes all my energy.
If you see me online, you usually see me happy and active, outdoors or with family and friends.
You didn’t see me on the days I don’t post a picture. You didn’t see me thirty seconds or thirty minutes after the picture when I am a wreck of pain, fatigue or nausea.
This disease has taught me many lessons over the years but one of the biggest lessons is to never judge a book by the cover. From a very young age I grasped what it was to be human and vulnerable. We are all equal no matter our gender, sexuality, colour of our skin, culture, height, weight, hairstyle, health, abilities, age, lifestyle choices, diet options, and so on. Each of us can be stricken with an illness without a moments notice. Each of us walk with a story to tell.
In this time of pandemic, we may have finally slowed down enough to start dealing with some human issues. Let’s remember no matter the cover on the book, the pages inside are all the same, with variations in the text that makes each book unique. Let’s take the time to get to know ourselves and each other. You would never read a book and tell the author they got it wrong, and you have a bigger and better story to tell.
So let’s work to bring each other up, and stop wasting time judging. Let’s listen. Let’s ask questions, and stop assuming we know the answers. Let’s not listen just for an opportunity to speak, but listen to really hear someone’s story. I know I can do better and have much work to do. I think this is the same for just about everyone.
There is so much more to every story than simply what you see. Listen well, be kind and love each other.
Jealous of everyone’s ability to move, go, jump, plan, drink, run, drive, and walk without limit.
It can make me angry.
I know everyone has their struggles, their own limits. I am a good person. I can empathize. But sometimes I can’t get past anger. In times like this I throw myself a pity party and no one is invited.
I don’t like to envy others. But if I’m honest, I do. So when I do, I get angrier.
I envy the idea of not living with chronic illness for the entirety of my adult life.
So many people are afraid to talk about bowel issues. They consider it private. I envy that. Wish I didn’t have to talk about it. I wish it was private.
My protection against my anger and envy is humour. I tell everyone poop jokes. While I enjoy them, in reality those jokes are just a facade. They are a wall I put up to keep everyone out. I think if I joke about it, others won’t be able to belittle me. I will give the impression of strength when in fact I am weak.
A bowel disease for a young woman is hard to fathom. Your pride is no more. It’s just as well to laugh, otherwise all you would do is cry. Funny enough, I usually cry when I’m angry too.
I’ll try not to put my anger out on anyone. I’ll try not to be envious of your sparkly lives. I’ll try to remember my blessings.
But right now I’m forgiving myself. I’m going to let myself feel anger and envy for a minute. It’s better than sadness, and I have no joy right now.
Joy will return. Just not right now. And that’s ok.
If you have ever seen a zombie film, what is the common denominator between all the various creators of a zombie character? It is walking lethargically with a drawn face.
That was me only a few hours ago.
Walking in nature has become my guilty pleasure. I plan my day so I can get the maximum time at the river. My energy levels are varying and eating times impact walking ability as well. So it’s a juggling act.
I’ve written about spoon theory for chronic illness and pain. Basically I have been realigning my spoons to allow increased activity outdoors. The goal is to strengthen my mind, body and soul.
The unexpected outcomes from this guilty pleasure include even less pulling my weight at home, spending more time laying down, and many various types of accidents or pain during activity.
But today I did a little too much and by the time I was on the trail, I think I used my last spoon.
I got to the end of the trail, the turn around point for me. I have a three part walk and this was part one. But my body failed me.
If anyone reading this entry has ever had an attack in the woods and had to go- no choice- just had to go- you know what I was feeling.
The issue is I usually am quite weakened with each attack. On a sunny day I would rest on a bench. Today it had been raining a lot. There was no where to sit, catch my breath, and rebuild some strength to walk out.
So as I headed back, hoping to do the second part of the trail, I started feeling woozy, nauseous, and light headed.
This was the point where I turned into a zombie.
I barely remember the walk back other than it was horrible. I did not get to the second leg of my walk.
I then drove home but to be honest, I shouldn’t have.
I then lay down at home and as the pure fatigue, pain, cramping, and sweats came over me, my daughter brought me water and my heating pad, and my husband brought me cuddles.
It took me awhile to feel a bit human again, maybe 4 hours.
Be cautious with your spoons. Zombie life is not all it seems.
Funny how we often dread cooler, rainy days in summer. We want those warmer sunny days so we can swim, socialize, do household maintenance, sunbathe… Rainy days stop the beach trips and river swims that we wish would go on forever.
But rainy days also bring us clean fresh air. The grass gets greener. The trees strive for the sky just a bit more after a good rain.
Rainy days lead many people to spring clean, spend a day at home playing board games, watching movies or other activities we wouldn’t do if we had the option to be outside.
Rain refreshes. Rain renews. It helps lawns grow. It wakes up the earth. It sounds like peace. Rain can be calming, and can rock many people to sleep to the soothing tone.
I don’t mind the rain. I live with a built in figurative umbrella which shields me from the worse…. and I also have a literal raincoat. While there are sunny days, we have to always be ready for rain. Rain may not be preferred, but it brings its own disguised goodness. Family time, rest time, nature’s healthy break. Sometimes on this rock we call home, we have rain for days…. it doesn’t stop life from moving and flowing.
After the rain everything is brighter and the rivers are teeming. We are able to appreciate the sunny days so much more. Living with a chronic illness, and chronic pain, I have learned to appreciate the good, ‘sunny’ days when all is right with the world. But I also have learned to dance in the ‘rain.’ To live with pain.
Pain brings with it benefits and knowledge, despite the discomfort, and I believe it hones ones ability to truly empathize. To know chronic pain is to know the limits of yourself as a human being. It humbles and educates. To recognize the good in the bad, is a way to cope with the conflicting feelings of both sadness and joy.
I walked in the rain today on the trail, alone. No one but me, my dog, and nature’s company. Today I saw a yellowhammer, two duck families, and a muskrat swimming in the river. I walked up the stairs instead of down, which would have been impossible two months ago. It’s these little blessings I count. The ability to walk in nature at all is a privilege I don’t take lightly.
But yes, I got wet. I soaked my shoes. I made a lot of dirty laundry. Even my dog needed a bath. I felt tired and in pain afterwards.
But it was worth it. I love the rain. And besides, how can it hurt? I’m not made of sugar.
But today the feeling is hurting me. Because I’m in pain. I’m tired. I’m not well.
I want to go, I don’t want to stop.
But I have to stop sometimes. I have to sit and rest and nap and relax and miss seeing the trees and birds and river on my favourite trail.
The feeling that I shouldn’t stop is bad sometimes because rest feels lazy, not walking feels unproductive, not communicating feels lonely.
But I have to recognize the feeling that I shouldn’t stop is moreso a good thing. It will help me recover, gain health and strength, and help me to prepare for the fight that is to come. It’s what makes me a dedicated mother, wife, employee, and friend. It’s what makes me, me! I don’t want to stop exploring, acting like a big kid, blowing bubbles and swimming in the ponds. I don’t want to stop fighting because once I do, this fight will be over. It will be over and Crohn’s would have won. I am thankful I have a feeling that I shouldn’t stop. Stopping means deterioration and poor health for the rest of my life.
So I have to tell myself that while I’m resting I haven’t really stopped. It’s just a pause. It’s not a negative. Sometimes you have to stop to see what’s around you. To appreciate the importance of rest.
This inner battle continues but I will not stop… I will pause, and repeatedly tell myself it’s not forever.
I feel so safe. So safe to be me. To be myself. To be sick. To be sick again. Then to be well, and active, and chipper, and busy, and smiling…. for a while anyway, and then to be sick again.
To not have to explain why I’m lying down again. To not have to explain why I’m in bed so late or so often. To not have to explain why I need wipes and a bidet and new underwear and creams and special foods and heating pads and pills and needles and urgent absences.
Because I am understood here.
I am not questioned or attacked.
I am not accused of being lazy.
I am wrapped up in the arms of love as unconditional as it gets.
A family that recognizes I was able to do so much more before. Before this flare up. Before it got so bad. A family that hates to see me like this. But knows it will get better. Knows that I don’t deserve this but I do deserve kindness, caring, and understanding.
A friend told me today that timelines are relative.
It was a good perspective shake up, timed perfectly for today.
I’ve been kind of obsessed with how long I’ve been sick, how long I was flaring, how long I’ve been waiting, how long I’ve been off work.
But what really matters is the moment you are in.
Five months of waiting is long but it doesn’t mean anything really. A day of waiting when a loved one is dying feels like the longest hardest day. A lifetime of waiting for a miracle is worth it.
In my mind being off work 6 months or more was unacceptable. Being in receipt of disability payments, while needed, was a sign to me that I have been off too long. That I’m useless or done.
I’m not done. I’m not useless. Even if it takes 20 months I am not those things.
How grateful I am to have a friend who can challenge me and say the right thing at the right time.
So I will focus on today. It took me about four hours to get out of bed. But I did it. It took me pure will and strength to shower. But I did it. I walked today in pain and slower and shorter than usual but I walked.
Time after time I tell myself these same lessons but the longer the wait the less I believe them. Luckily today a friend reminded me these lessons do not expire. Time is relative and appreciation for the moment is a key to a healthy and happy life, no matter your circumstances.
I have been trying to see the ducklings every day since they hatched. While waiting for surgery and being cautious about my activity, I have started walking a trail near my home on a regular basis. I post pics and videos online of the ducklings. Many people like to see the updates but most do not understand my fascination.
In truth I am in awe. I feel so privledged to be able to watch these creatures nurture and care for their children daily, despite the pressures of the wild. I have already witnessed a crow, mink, and hawk hunting and taking the babies. I have seen these families reduce in numbers.
I am invested. Invested in their future and hopeful that at least one duckling per family survives.
I am inspired. Inspired by the strength and nurturing of the parents as the little ducklings flop around and play and get lost. The mama duck is there trying to keep them alive. They are oblivious to the hawk above them or the mink swimming close behind. They have to trust their mama.
I am saddened but also joyful when watching this miracle and tragedy of life.
I feel privileged to be able to slowly walk along the path with the ducklings and adults swimming along side of me.
Even my dog, who barks at everything, including blowing leaves, seems to love the ducklings. The dog is just curious and never barks at them.
We are all a part of the bigger world. Our lives do not only exist inside our bubble or our home. While we may all feel a bit trapped or claustrophobic right now, understandably so, I think it is healthy to remember we are just one small part of a bigger setting.
I’m raising a teenager and trying to minimize all the risks she will encounter. I’m trying to gather good food for the family amidst the risk of covid. I am trying to keep a warm safe shelter above our heads despite being ill and unable to work. I am trying to keep my duckling safe. All of this I have in common with mama duck.
Maybe it sounds silly but in my opinion it is true. We are at the basic level of our hierarchy of needs- just like all the living creatures. We are no different, we are not special, we are just creatures sharing the same planet.
And when I walk again today and see the miracle of life all around me, I will smile. I will photograph. I will share. I will continue to be in absolute awe of the beauty, the miracle and the tragedy.
In Newfoundland we are known for our humour and our many variations on the English language. Every area of the island and mainland portions of the province sound different. You can tell what region someone is from, by the way they speak. I am proud of my Newfie accent, and love the jokes and humour that are a part of our heritage.
One of the well known Newfoundland sayings is ‘oh me nerves’ , ‘ you got me drove’ or ‘ you got me nerves rubbed raw.’ Basically it means either we are nervous about something or someone is irritating us and getting on our nerves.
If you have been following my blog you know I have had a long wait for my bowel resection. Finally, I will have this done in the next month or so. I was so excited to finally get a call. The healthcare system, covid and my Crohn’s disease symptoms together really had me drove!
But now that I have my bag packed and I’m just waiting to be called in, here comes that scary feeling in my tummy…
Oh me nerves, I have to get surgery and no one can be by my side! I have to be away from everyone for a week! I will have no one to sneak me a treat or a new pair of jammies! I am getting cut open! Oh me nerves.
I’m being kind of silly here, I know. But I was mentally prepared for surgery in February….. so I guess I just need to mentally prepare all over again.
Luckily I haven’t lost my sense of humour, thanks in big part to being a Newfoundlander. But as for Crohn’s and covid and delays: you got me nerves rubbed right raw.
I feel as if I am twirling down a long deep hole. I feel as if I’m in a never ending void with no ability to stop, slow down, speed up, or have a break.
Trying to find the joy in everything is exhausting. I look for the plus side. Overall my energy is still joyful.
I try to find the joy…. But still I keep swirling.
At times the thoughts in my head consume me and I can find no reprieve.
The worse case scenarios and delays and pain and delays and pain and future worries terrorize my mind.
A tightening in my chest and butterflies in my stomach. Are these my new normal?
Levels of fear are multiplied now.
Will I ever get help?
My rational mind knows I will. The child in my mind, however, throws a tantrum. Stomping and crying and red in the face. But why!? Why me, why now, why me? Why delay after delay. Is it time yet? Can I get fixed soon?
The world goes on. Virus or no virus my work continues but I am absent. I know the longer I travel down this never ending dark void, the less missed I will be. Everyone is replaceable. I am not special. It’s just work.
Going alone to the hospital feels like a scary movie. No support network. No one to make sure I am cared for. I was a part of the support network for a very close family member who also had a bowel resection. I saw the things that were missed as an in-patient. But four of us were by her side ensuring she was safe.
I will have no one.
I was so happy to have good news from the surgeon but I need this to happen now. I need my life back.
Anxiety builds, I am trying to do everything before I am admitted. But I am sick. I am tired. I am weak. I can’t do everything.
I am still joyful but the sadness is taking over tonight.
Don’t worry readers, I will be fine. But sometimes fighting sadness, dousing it with joy, it just doesn’t work.
Even my walks in nature are regularly ruined by attacks of pain or accidents that are embarrassing and disgust me. I cannot escape myself. I cannot escape this disease. No matter how many steps I walk. No matter how many friends I talk to. No matter how many ducklings I watch swimming. I still walk in pain and with worry of the next attack.
I guess it really is simple.
I will never be satisfied. Not until I am well again. Not until I can work again. Not until I am me again.
When you look at me I can see the love in your eyes.
In that world of blue I can get lost and I see so many things:
The history we share,
The family we are raising,
The pride we have in the life we have built.
No one knows me like you do.
Everyone was shocked by my blog- you weren’t because:
You know me.
You see me.
You never stopped loving me when I told you my darkest secrets. You understood I couldn’t fully trust anyone. But 24 years later, guess what?
I trust you.
I trust you with my life.
We were only 21 when I was sick the first time and you showed your love with actions:
You stood by my side,
You put up with my moods, my mean comments when I felt angry, my mistakes, and my less than awesome faults.
Despite all this, I can still see the love in your eyes.
You are my safe place. I was tormented by nightmares for a few years but you took those away. I have been fighting this disease for 22 of our 24 years together. You didn’t run, you didn’t flinch, you didn’t blame.
I recently wrote about dandelions. Every year when I see a dandelion for the first time I pick it for my mom. It’s a tradition that started way back when….
As a child I knew my mother’s favourite season was Spring. At a young age I would always bring her dandelions in Spring. I feel like it may also be my maternal grandmothers favourite season.
Mom would always treasure those dandelions and display them in a vase on the table or counter top. She showed me her love by always making time to appreciate the small and seemingly insignificant gift. But as a mom myself, I now recognize how significant it was.
As I got older I would keep bringing her the first one I saw each year. A sign of spring, rebirth, and life.
As I grew up and moved away I started picking one and pressing it and mailing it to her. One year I even did a little photo shoot and sent her pictures of me and dandelions along with an enclosed pressed dandelion.
Mom tells me she finds them everywhere now. In books and drawers. She has kept every.single.one. Think of that- that’s a lot of dandelions. That’s a lot of love.
I’m now 43. I just picked a dandelion yesterday and once it’s dry I will mail it to her. She may store it in the folds of our family bible or she may display it. I know she will treasure it as I treasure her.
The little things in life mean so much. I show her how much I appreciate her by remembering to send one each year. She will check the mail and get a dandelion when she least expects it. It still carries the message of love, life, spring and hope. It carries the message of resilience. I know it makes her smile like I smile at the sight of the first dandelion.
Resilience is a natural quality in our family and our home province. We have had many struggles over the decades but we remain a close family filled with love and laughter. There is always lots of music and singing and fun. We share a love of nature and the great outdoors.
I will keep this tradition going. I hope someday my daughter will think even a small portion of me as I do of my mom. She is a warrior and trained me well.
We keep going one foot after the other and even when it feels like winter will never end, a dandelion will appear and remind us to be hopeful, happy and thankful.
Good things come to those who wait. At least, that’s what they say.
In my case, after waiting five months for a call, it finally came today. The new surgeon called and I can expect surgery to occur in the next 3 to 6 weeks. Unfortunately I cannot have anyone in the hospital with me, not even my spouse. This will be difficult for us all. But we will rise above and get through this as the fabulous team we are.
What a long road this has been. Five months ago I was told it was time to have a resection and it would happen soon. As we know, many delays have occurred. First it was a state of emergency due to a major snow storm. Then when the storm cleared about ten days later, surgery was delayed due to the surgeon fracturing her elbow. While waiting for that to heal, or to get referred to a new surgeon, the virus happened. Finally, once our region started allowing surgeries again, I find out my surgeon is gone off work for a year or more. Since then I have been waiting for a new surgeon, a consult, and a surgery date.
But its been longer than five months. Prior to five months ago, I was having significant difficulty with new symptoms which I now know was due to the stricture. The first medical emergency was January 2019.
But even before then, I started having symptoms of flare-up about three years ago. It was mild at first. But as we know, when we don’t change treatment or intervene quickly, Crohn’s disease will run rampant. And it did.
So here I am today. My new biologic treatment seems to be starting to work. It is now injected every four weeks and I am seeing improvements. The stricture is causing me trouble each day, just yesterday it knocked me down for a number of hours due to pain, cramping, and nausea.
But today is a good day. No. It’s a great day. It’s a sign that help is on the way.
In retrospect I have been blessed with these last five months. Yes, I have been quite ill. But I have also spent a lot of quality time with my family and friends, albeit mostly virtually, and I have given Stellara time to work. I have started getting more active to strengthen my body for the procedure. I am mentally well. And honestly, I think I have finished all the tv shows that I could even want to watch.
If it is true that good things come to those who wait, well I have certainly been waiting, and the surgical consult today was definitely a great thing.
Thank you to all of my supporters. You know who you are. Every text, call, visit, FaceTime, Houseparty, and gift was valued and appreciated more than you will ever know.
Trust is a fragile thing. It takes a lot of work to build it and very little to tear it down. Like a house of cards that took hours or days to build, the slightest breeze can topple it over.
Dealing with teenagers and the never ending trust cycles is tiring enough. It is sad when your child betrays your trust and it shocks you to your core. But we all know that is a part of growing up, we all have been there, done that. And trust will hopefully rebuild as the child matures.
But when a healthcare professional topples the house of cards, the same person whose hands hold the possibility of your future health, that trust may never rebuild.
The cards are on the table, visible for all to see. It is something you can’t go back on. While all humans make mistakes, and can be forgiven, the role of ‘doctor’ comes with another layer of expectation.
If a doctor can’t help you, has a personal issue, or is dealing with a lot of clients, there are still ways they can maintain trust. Most importantly is honest communication.
If a doctor has to postpone and is not sure when they can see the patient, they can simply ensure a call is made to that person. A phone call keeps communication going. It can be from the reception clerk, or the doctor themselves. I know from a professional perspective that communication is key. Even when delivering bad news, if you explain the process honestly and openly, and do not avoid contact, the client will feel like they were given good customer service and feel valued and included. But if you ignore calls, do not reach out, and just seem to forget about them or you don’t bother to take the time to explain things, then distrust will grow.
A patient may be out there in the world living in pain daily and remembering the only thing that gives them hope: the consult they had with you months ago where you promised a new future. That consult may be all that’s keeping them going. But as a doctor, you may have too many patients to remember each one. So please, I implore you, put something into place to ensure each patient feels heard.
When I talk about this issue with others, frequently the conversation turns to ‘that’s our healthcare system here, it’s the way it is’ or ‘it’s not a doctor’s job to think of the social, mental health, human side, they have other people for that.’ I think we need to stop using these excuses for our healthcare system.
If we work together maybe we can incite some change. I know it is possible to maintain trust in a healthcare/patient relationship as I currently have a doctor who is the epitome of what it means to be a thoughtful human, and a trustworthy healthcare professional. I also know the opposite exists. I will not go into my negative examples today, but rest assured I have lost trust with healthcare providers in the past, and the only solution I have found is to get re-referred.
It is hard to build trust if there is little or no communication, and almost impossible to rebuild trust. Plus, the heightened expectation that comes with being a doctor makes it harder. You need to fully trust the person who will eventually cut you open, change your medications, or recommend other treatments.
To me, its very simple. Honest communication facilitates trust. Let’s remember we are all just humans with our individual roles and at the end of the day, we need to be informed. Let’s respect each other on the human level. Let’s focus on the good things we can do which will result in more long term trusting healthcare relationships.
Walking through nature, looking at the trees and river, gravel crunching underneath my feet, I fully breathe in and recognize, this is the most perfect time of my day. To the other trail goers, I look healthy and happy.
But under the surface there is a dark form that ever leaves. It is my illness reminding me not to get too comfortable in my pleasure, there are terrible things ahead.
Laughing with my daughter and partner, we cry from the jokes we all share and the goofiness that is our family. We hug and laugh and laugh. Then we tell each other ‘I love you!’ This is the most perfect moment in time and I feel gratitude for this simple pleasure. On face value you can almost forget our reality.
Because under the surface the illness laughs. It threatens my future and to me this means my family is threatened.
Puppy love. Puppy cuddles. Car rides with the dog. While she barks at almost every other creature, she spreads joy and people love her. Time with my dog is an invaluable treat during this flare up. She keeps me going, walking, trying.
Yet under the surface the dark shape widens and rises. Remember, it whispers, I’m here and I need your full attention. Go home, you have to go home now.
My spirit is strong. For example, I attempted three walks a couple days ago. One, I had too little energy to complete. Two, I had a severe attack and had to race home to my bathroom. But three, I completed my walk. I finished my goal. I feel accomplished in this moment. I am impressed with my determination. It shows me I will survive this flare.
But under the surface lurks my most dreaded companion. Every day I have to work around Crohn’s disease. When it turns its head, I have to change my plans. And then I have to recover from the attack and pretend to be happy. It is exhausting to have this daily, hourly chore.
Every task, a little harder. Every task, takes me a little longer. I do the task, in time. With decreased expectations on myself, I pot my plants, bake the cookies, walk the trail, attempt to solve a puzzle, all within my own timeframe. Life slowed down. It feels good to accomplish even small tasks like brushing my hair. I pat myself on the back for these little wins.
Yet under the surface of my reality is the truth. I am not successful, fast, quick, able, or vital anymore. And every day I wait for help is another day closer to a life of long term disability. The dark truth scares me, and pushes me down.
Keep going. I tell myself to keep going! As long as I can, I will. But while the world sees me and there is no sign of illness, I wish they understood what is waiting under the surface. Or the weight of carrying that extra burden around daily. Like anchors on my feet. Like chains tying me down. And the fear in my heart that can at any moment take you down, under the surface, never to rise up again.
Treading water was never meant to be a way of life, but a way to catch your breath and float while waiting for the next part of the swim. I can only hope I can swim to shore soon. My legs are tired. My heart is tired. My mind wanders to the temptations under the surface. I keep treading. I keep hoping. I keep waiting. I remind myself I am resilient and strong. I have fought and won many times before. I may be older now, but I’m wiser. I may be weaker physically, but I am stronger mentally. I will stay above the surface. I will survive.
I’m feeling nostalgic. Thinking of my time with my grandmother when I was a child. Nan Rose making me fish fried in pork, talking about my future, playing cards especially Pick Wess, and her always winning. I remember her buttering my nose on my birthday with passion and finding butter in my nose and eyes for days. I don’t have a lot of memories of my Dad’s mom, as unfortunately she passed when I was very young.
I think of my mother. I can’t even start to list things my mom has done and continues to do for me daily. We have the same sense of humour and passion to help those in need. She taught me to step up when other people are hurting. She taught me to cook, to bake. She showed me love and compassion even when I rebelled as a youth. She encouraged my love of nature and family. She played games with me. She spoiled me with love. She always took care of me. She still does. And sometimes, she lets me take care of her.
And then there’s my daughter. Such a blessing in my life. She challenges me in every way every day. She teaches me as I continue to guide her. There is nothing better than a genuine belly laugh with your child about something you both find hilarious. She is a perfect blend of both me and my husband. Such a beautiful spirit. She is resilient in the face of adversity and I hope I played even a small part in this. She cares deeply. She loves immensely. She is a wonderful young woman. I can’t wait to see where she goes next.
And my one and only sister. She was nine when I was born and she has told me stories of what it was like to have a baby sister at that age. She took care of me and I was a torment I’m sure. She brought me special surprises like books and kraft dinner, my favourite things. When I was first sick with Crohn’s disease she flew across the continent to be by my side. She slept in a chair by my bedside while I healed. She is one in a million and went on to be a fabulous mother as well.
My aunts are also such an important part of my life. From camping trips to holidays, they have been a constant force of strength and love my whole life.
And my nieces! Oh my nieces are all so beautiful and talented. My youngest Neice graduated high school this year. My oldest Neice is a wonderful momma to her little boy. I also have a Neice in university making straight A’s. I have another Neice who is working on the front lines during this pandemic and who is growing into a wonderful young adult. Another Neice of mine just started university this year and is flourishing. I have many nieces, each with a special story. You are all wonderful and I love you so much. I know your mother’s are so proud of you each day and they look forward to celebrating Mother’s Day with you.
I can’t forget my many girlfriends and co-workers and managers over the years. Each so beautiful and unique. Each struggling with their own stories but accomplishing amazing things anyway. I love you all.
Finally, my darling pets, you make our house a home. Being a pet mom warms my heart daily.
May you all have a wonderful Mother’s Day. I find strength to keep fighting because of all the wonderful people in my life who build me up by being true to themselves. Understanding that kindness and love are all that matters. Houses, clothes, things, are not what matters. Connection and support means more than any item ever could. Giving the gift of your time, to talk, laugh and listen is invaluable. I thank you for your gifts.
Today I found out I am referred to a new surgeon, have already been triaged as urgent, and will be seen in the first clinic once clinics resume. I feel solid and hopeful. I think maybe this trial was meant to be. That maybe it is happening the way it was meant to.
So I got my puppy and went for a walk to the ocean. I saw so many hopeful and joyful things. The most inspiring was when I saw two young children, maybe 10 or 11 years old, with bikes thrown down on the beach while they ate a lunch near the river. Sitting watching the river flow into the ocean. What would those children be doing if not for the pandemic? Perhaps they would be home on their devices or with a large crowd. Instead they are out in nature, enjoying simple pleasures of past childhoods.
I also note my own teenager is doing things like football, basketball, walks, puzzles, and daily online challenges with coaches. Again, these things would not be happening if not for the pandemic.
Perhaps this waiting time was meant for me to become physically and mentally stronger so I can better fight to recover once surgery happens. Perhaps it was to give me more time with my child to see she is so many good things despite the challenges all teenagers face. Perhaps it was so I could truly see how large and genuine my support network is. I had so many friends and family members worry for me and contact me during this time. Giving helpful suggestions and just listening.
The sun is shining. Spring is here. We are all taking a deep breath and enjoying quieter moments. We have been successfully reducing the harm of this virus as a society.
Have you ever said or did something you never thought possible? That went against all your instincts? But nevertheless something changed and you did it? If so, how did you feel the next day?
I feel like I’m falling.
I decided to ask for help. I went to one of the highest levels and asked for help. This is something I would never ever do in the past.
Why do I need help?
Because I feel I have not gotten the proper support in regards to healthcare and surgery bookings/ referrals. Mistakes were made. I simply need to have a contact person and a surgeon. I currently have none. Hence the last post I wrote on Friday, about feeling like an immobile piece of drift wood. I had just found out that my surgeon was gone for a year. No plan in sight. No number to call. As I sat by the river, I noticed the stuck piece of wood. I felt a kinship with it and wrote my post in minutes. I did a lot of driving and thinking that day. I was out of sorts.
Why do I feel like I’m falling?
I realized reaching out for help on a grand scale was so against my inner being that once it was done, I shocked even myself. I felt exposed and vulnerable. I worried I would be misunderstood or considered in a negative light.
I can ask for help from loved ones and doctors. But I don’t ever wish to appear entitled or demanding- I do not want or need special treatment, considering we are in the midst of a pandemic. But on Friday I realized the treatment I was getting was less than any of us deserve especially at this time of stress.
In the past, my pride would always stop me if an issue arose to my attention. I would not make this a fight or a public issue. I would be a good human and wait. Especially now, during a pandemic. I feel pressure to be a team player and go with the flow. The problem is, my life is at risk, which means my family is at risk. I am a momma bear. I have to take care of me, so I can protect my family.
So I decided this time to send a letter. Now I feel like I’m falling.
What was my intent?
My intent is to inform officials of the personal experience during this pandemic for people who need surgeries which may not be emergencies now, yet could easily become emergencies any day. For example, I was told I have a 40% chance of cancer developing in my stricture on December 5, 2019 but not one phone call or update has been given to me since. I have called numerous times to no avail.
I do not intend to push for surgery now or jump any lines or get preferential treatment. I intend to have at least a contact number and a plan. Right now I have no direction. Even if I find out I have at least a year to wait, that is better than not knowing.
If surgery doesn’t happen I will continue off work, dependant on the system and living daily with life threatening risks of bowel blockage and/or rupture, and cancer.
It is also clear to me that I have many privileges in life. I have a good education, supportive employment, financial security, a home, a family, friends, a cozy bed, pets, and I have good days where I can be active. I know there are people on the same urgent surgery list as me with less privileges. People who may not ask for help. Who may not have the means to wait in comfort. Who have to work despite their medical condition, possibly worsening their health. Who are in dire need but no one knows this. So many people in the same pile of referrals as me.
I know this situation has impacted my mental health. I can only imagine the impact on the mental health of other patients on the list with me. I am fearful for the fall out from this pandemic in regards to our societal mental wellness. Especially for our more vulnerable populations. A phone call with some clarity would really help the majority of people feel at ease in regards to their healthcare. A plan would calm many worries. No word for months is not acceptable.
While I understand this is an unprecedented time, I believe strongly that our healthcare system could have handled the urgent surgery pile much better months ago.
So, I wrote a letter and I reached out. It took courage. I held my breath as I sent the letter. I kicked myself multiple times since. But I try to tell myself, no regrets!
While I feel like I’m falling right now, I hope I land on my feet. I tell myself it was right to reach out and advocate for something more to be done. Even if it goes nowhere. Even if I get no reply. I already felt powerless and stuck, so maybe feeling like I’m falling is preferable.
Perhaps falling is the first sensation of upcoming freedom.
I have never been a morning person. Just ask my parents or partner. I am prone to oversleeping. However this trait has never stopped me from anything I have had to do. I may have needed three alarms with five snoozes each, but I did it. And there is something special about leaving your house in the morning and driving to work or school and being productive. Especially when you are well. Funny thing, you don’t realize how privileged it is to be well unless you have been unwell.
During my last period of remission it was suggested that I may also have irritable bowel syndrome or IBS. This is something completely different than inflammatory bowel disease or IBD. IBS is representative of a person who has bowel troubles or digestive troubles due to a stress reaction or food sensitivity which cannot be attributed to a disease. This doesn’t cause permanent damage to the body, or inflammation, or threaten your life, but it is very difficult to live with if not under control. It is important to find your triggers and work to avoid them. IBD is either Crohn’s disease or ulcerative colitis and they both do internal damage in a permanent way and can impact your life and threaten it as well. It requires treatments and oftentimes surgery. There is no known cause or cure.
In retrospect I believe that while IBS was likely a truthful issue, active inflammation due to Crohn’s disease may have been missed at the time. This likely allowed so much more damage to occur internally. My GI (gastrointerologist) did a colonoscopy when I started having issues and told me there was no active disease and as such, it was likely IBS and I needed to do a food journal. However, months later my family doctor reviewed the report from the colonoscopy and it clearly stated there was active inflammation. To this day I am not sure what happened but it is likely the GI doctor gave me the wrong news.
A few years into remission and after the IBS suggestion from my doctor, I started having morning urgency and pain issues. My morning routine changed for the worse. After getting up, fighting nausea and diarrhea, and likely using the washroom 2 to 4 times before even leaving the house, driving to work was not the same. At the time this started I assumed it was IBS. I think I was incorrect. This morning routine started delaying my departure from home and impacted my energy and emotions daily. In the beginning once I was at work I was fine for the most part. But as time went on these attacks led into the mid morning and I had to start finding safe bathrooms both in the office and at client buildings.
I started to recognize the issues were worsening about three years ago and felt it was more serious than IBS. These attacks then started being more painful, and caused fatigue and nausea sometimes all day. The odd thing about it, I even started doubting myself and wondering if this was all in my head. I know it wasn’t but being told I had IBS when I had active inflammation had made me doubt myself. When you are in it, it feels surreal. When no one seems to help or listen, you start feeling like you are not correct. But I know now that I was.
My mornings were no longer about the difficulty waking up. They were now about the difficulty functioning enough to get out of the house. I’d go with no breakfast and I’d have ongoing pain and nausea. I’d run back and forth to the washroom, and suffer through multiple attacks every morning. I would have loved to just have to deal with an alarm and not this new morning routine which I dreaded. By the time 2019 arrived these bowel movements and attacks and all the symptoms that go along with that worsened even more. It was no longer just my mornings being stolen.
There have been opportunities I have had to decline due to this disease. Invitations to sleep at other cabins or family homes have to be avoided as much as possible. My child started hiking and tenting for a program called the Duke of Edinburgh but I could not volunteer to participate because I could not go somewhere with no regular and trustworthy bathroom facilities.
I started noticing all I did was work and rest- the remainder of what made me, ‘me’ started slipping away. I ‘knew’ people were thinking I was lazy or not involved enough. But I just couldn’t sustain anything beyond the work routine.
Slowly but surely this disease kept worsening and my flare up is now full blown. The slow unidentifiable inflammation over the last number of years have led to a permanently scarred colon and surgery is coming in the future- hopefully sooner rather than later. I wonder if the GI doctor hadn’t passed my symptoms off as IBS, could this have been stopped years ago? I guess we will never know.
Since stopping work I have been on my own schedule and I’m happy to report it is easier on my health when I can sleep, eat and soothe my attacks at home. And funny enough, I’m starting to enjoy mornings more now that I am home. Rest is helping me be more comfortable at this time and allows me to have good and medium days despite all the bay days.
However, as silly as it may sound, I so look forward to the days of three alarms with 5 snoozes each. In fact, I’m starting to think I may not even need all those alarms when I’m well again, because the privilege of being well and having a productive morning routine will be appreciated so much more.
As a child and a youth I loved being out and around with my friends. Some summers all we had was fog and drizzle. I have naturally curly hair and I would leave the house with straightened bangs, and return looking like a poodle. Those were the days.
When we would get the sunny days we would spend them swimming and enjoying the beaches and rivers. We would spend our evenings, no matter the weather, on the playground watching the basketball game and swinging.
Those quiet peaceful foggy nights were the best in retrospect. Curly bangs or not, we were with our friends, laughing, playing cards, dating, biking, talking, singing.
Today is very foggy outside. But this fog feels different. The world seems to have tilted and nothing is the way it was. Those carefree days and nights are gone. Those new blossoming romances and friendships are now only flourished virtually. No one can hang out, play basketball, or get their hairdos messed up in the fog. We can, but we will do so solo.
In my home province, rain, drizzle and fog is a frequent forecast. We are accustomed to this and with each day of fog, we look forward to a sunny day soon to come.
And just as we wish for better weather we also have learned to enjoy the weather we get. If it rains, that’s good for the grass and for raincoats and rubber boots. If it snows, that’s great for sliding, snowman making, and snowmobiling. If it’s sunny, everyone is outside and the trails are filled with smiling families.
And just like that, we also can look forward to the days of coming back together. To spend evenings on playgrounds again, as they are currently all closed. To look forward to turkey dinner with family in person and not on a screen. To hug yours family and friends instead of waving through glass windows.
This foggy day will pass. And when it does we will celebrate. But for now let’s try and enjoy the days we have, no matter the weather.
I was a young girl, maybe 3 or 4, running through the trees, around the cabin, when I really remember my first hurdle. I was running from my brother and his friends. 🎶 I jumped onto the unfinished rail to a new cabin, and slid down the rail on my stomach. I screamed and couldn’t get down. I had sliced my stomach on the splinters and I started crying. Mom got me down, fixed me up, and cheered me on. We laughed together. I learned that day that I could depend on my mom, my family, when I needed help. I could depend on smiles and laughter to improve my experiences. I jumped that hurdle of fear and hurt with family support.
We all have had hurdles to jump. Whether it’s having patience with your family during this time of isolation. Or learning to deal with a life changing event. Or dealing with a loss. Or fighting your own mental health issues in a time of global crisis. Hurdles are a part of life. Sometimes I wish someone would take the load off me and put the load, put the load, right on them. 🎶
When I wake up each day, my first hurdle is getting out of bed. It hurts to move most days. Some days there is no hurdle. I slide out of bed, make coffee and start my day. But the majority of days I am leaping hurdles left and right. Crohn’s disease will make you jump, jump. 🎶
Once up, I have to determine pain levels, bathroom needs, energy levels, and prioritize my next hour based on that. Most days I get back into a cozy position on my recliner. But some days I explore the nature trails. I remind myself all the time, I can only do what I can do. Time after time 🎶 I repeat this and tell myself I will do more later.
I have to face the eating hurdle. Do I eat now? Or later? At all? What can I tolerate today? Rice? Bread? Because eating will impact my day, my week, my month, or even my year…… 🎶.
Moving, sleeping, using the bathroom, eating, resting, walking, you name it, there isn’t any area of my life right now that is ‘easy.’ I know life isn’t easy, but enjoying breakfast should be. Going for a walk should be. I just want to take it easy. 🎶
But my humour persists. Just a few minutes ago I was humming a parody ‘here comes the pain again, paining in my gut like a memory, paining in my body spreading new emotions …’ 🎶 Do you know the song I’m humming? Are you singing it right now?
There is one hurdle I don’t have to jump. One that teaches me daily how privileged I am. I am safe and secure in my cozy home with a huge pile of family and friend supports who check on me daily, although with physical distance. It is a cozy blanket of caring and love. And jokes, they keep coming from my supports. Poop jokes. Quarantine jokes. Any jokes. Laughter, humour, smiles and music truly make a struggle much easier. So even though I am alone, I’m not all by myself.🎶
Stay safe and keep laughing. Let me know if you can guess all the songs I referenced in my entry. 🎶
I didn’t always know I had a high pain tolerance, until I was 21 with severe Crohn’s, and then I learned just how stubborn I was as my smile kept bringing me through.
My ability to walk, talk, work, sing, dance, cook, drive and interact while also in pain is a skill. It’s a skill many people who live with chronic pain have.
It’s when there is no break, no ‘brief reprieve,’ no end in sight that it gets hard for me to keep going.
This has been a long week. Starting with my fever Friday night, I really have not had a break since. I wake up, pain. I try to sleep, pain. I walk, pain. I use my heating pad, but only obtain a minor relief. This pain is higher than usual. This pain is constant. I walk hunched over. I make a lot of moaning/groaning sounds as I try to move. I take gravol for nausea. I take buscopan for spasms. Nothing takes it away. It reduces at times but never disappears. I have to use more energy to function than usual. It takes strength to push through this pain and still do things.
I think this would be easier to tolerate if I had a surgery date. But I’ve called many times and get updates that never include a date or a resolution. I’m starting to feel bad calling. I’m starting to feel very alone and afraid again. I’m starting to feel insignificant. I have been waiting four months now.
But I remember a saying from home, about our Newfoundland strength. That we are, as a people, ‘tough as nails.’ Yes I think I am too. I can keep sitting and semi-functioning in pain until I either become an emergency or get my surgery date. Because I’m tough as nails. I may be a bit rusty right now, but I’m still holding myself together.
I have had many experiences with various treatments over the last 22 years. Early in my diagnosis I used Pentasa. It didn’t help. Then I was on IV steroids and many other meds, while in hospital. I know my least favourite in-hospital medication was liquid potassium, given in apple juice to mask the taste. It didn’t work. To this day, I still cannot stomach apple juice. Once discharged I had a weekly 28 pocket pill dispenser, for more than 20 pills a day. Later I started Immuran and took that along with other medications for seizures and blood thinning.
Eventually many pills were no longer required and I only took my daily Immuran. That was very easy, but sometimes I could forget. When I switched to Humira I had to inject a pre-filled syringe into my tummy once every two weeks. After 8 years of that it was increased to once every week. I didn’t continue with my pills. I know some people continue with their first Crohn’s meds even when adding biologic meds like Humira, but my doctors did not recommend this. In 2019 I switched from Humira to Stellara. I was getting my Stellara in a clinic. Due to the pandemic and to reduce social contact, I have been set up to do my Stellara from home.
Today was my first day completing Stellara at home. It started in August 2019 at one injection every eight weeks but it was recently changed to every four weeks. So, the new plan is that on a monthly basis I will get a box delivered to my home with a prefilled syringe inside.
The main difference between Humira and Stellara syringes, is that I had full control with Humira. With Stellara, I control everything except the needle removal. The Stellara syringe automatically withdrawals from the skin once fully dispensed. It is fast and unexpected. It kind of hurts a bit and is a different feeling I will have to adjust to. So far, I’m not a fan.
So today I did it. I injected Stellara at home! I am back to self injecting, which is not a huge deal for me, although I had thoroughly enjoyed my clinic injections/infusion as it was relaxing and easy. Humira medication caused a bee sting feeling after it was injected but Stellara does not. I do feel a bit loopy and tired after Stellara, and this is my first time having it with only a four week gap. I do feel a bit nervous about that but will use self talk to keep those spinning worry thoughts away.
So luckily I already had a sharps container at home from my humira days, and I had alcohol swabs. I knew the process: sanitize hands, check date of medication, ensure the liquid is clear, wash area with alcohol swab, squeeze area, inject medication, dispose of needle properly, record what area was injected to ensure you use a different area next time, and rest.
Here are some photos but if you don’t like needles, maybe don’t keep scrolling! Stay safe everyone.
I have written about the fire I feel inside during a Crohn’s flare. I explained the sensation of feverish symptoms such as shakes, chills, sweats. This is ongoing with my active Crohn’s disease. If the fever gets worse, or registers on a thermometer, it could be a sign of infection or I may need antibiotics. Being immunosuppressed means it’s harder to fight infection. I have gotten accustomed to being ill and recognizing symptoms and treating them, resting, and getting through one day at a time. It isn’t easy but it’s my current normal.
Now we have a pandemic. We have to be on the look out for fever, headache, and other symptoms in case we have caught the virus. We have to quarantine if there is any suspicion of cold or flu like symptoms.
What does that mean for me? For example, a few nights ago I had chills, shakes, sweats, and I registered a low grade fever.
Normally a fever is scary enough for me as I fight Crohn’s, but that night I worried I was fighting covid. It was an eerie thought that someone who has followed the rules could get it. And if I have it, will I be able to fight it or is life over for me as I am immunocompromised? Who will take care of my child? How will my husband go on? How will we socially isolate? Will I make my family sick? I already need so much help due to Crohn’s disease, if I get sicker with covid how will I manage? No one will be able to help me. And on and on.
It was terrifying and I think my whole family unit felt it. My partner was steady and reminded us to wait until morning to see if it passed like most Crohn’s symptoms do for a bit, and if not we would call for help.
I awoke the next morning still miserable, but no fever or flu like symptoms: ‘just’ Crohn’s pain. I was grateful for my usual pain and misery, imagine that. At least you can’t give your family Crohn’s disease like you can spread the virus.
Since that night, the eerie feeling persists. I can’t put my finger on it, but it’s hard to trust any symptom anymore. It’s hard to think of your life being so at risk, a small slip with a sneeze or hand washing could kill me or others. It’s a very odd time in history. It’s a time we need to focus on mental health. Because I do fear for a mental health epidemic to follow covid. Living like this for an unknown period of time is taxing on the strongest spirit.
I haven’t written in awhile. I was not inspired. I had no words or descriptions to share. I felt like I was trapped in a moment where nothing made sense. I may have been having a crisis. I know at times my husband thought so.
I felt like I was spinning. I tried to fake it, to pretend I was ok, but I failed at that. I cried a lot. I drove alone a lot. I nearly checked myself into a hospital. But I also kept reaching out to my husband and to some treasured friends. I tried to avoid people but also tried to stay connected. I was not well in any aspect of my health.
With any change comes an adjustment period. I had settled into my new normal after being unable to work since 2020 began. That was not easy. But I had come to terms with it.
Then this virus changed everyone’s life.
It took me much longer to adjust to the virus. To grieve what was left of my old routine.
I am happy to report that I think my adjustment period is now complete. I think the springtime weather has helped. I think my support system who never gave up on me, has helped. And time, time has definitely helped.
I’m starting to see the good in quarantine. The small projects, the special family moments, the privilege of having a backyard and a beautiful neighbourhood with the view of a forest background through my window…. these are all good.
I know many people are not ready to embrace this yet. But if you can get here, it will be worth it. I see clearer now. I am glad it didn’t take any longer for me to adjust. I found out surgeries are still cancelled, other than emergencies. So I have a few more weeks to try and enjoy this time.
The world is quieter, the earth is less polluted, the animals are freer, children are spending time with families. Those who are sick with this virus, I feel for you and your loved ones. But I know our essential workers are sacrificing their peace and serenity of being home, to be on the front lines to help you. I feel secure in my local government. They are doing a wonderful job. I feel more connected to some, by the use of video technology. I am also trying to spend more time in nature, which is therapeutic for me.
So I choose peace. I choose joy. I choose love. Be safe everyone.
A few days ago, if you asked me how I was doing, I would have said I was not good, that I can’t tolerate the slightest inconvenience, that my nerves are frayed, and my patience worn.
I would explain that I was tired after a busy day, but I kept doing things. I didn’t listen to my body, my mind wanted to go, go, go! But I should have rested.
I would detail that I had tried to walk the dog despite being exhausted. I tried but failed. Part way into the walk my stomach was irritated and the pain skyrocketed while the urgency came over me. I had to turn around and rush home due to a Crohn’s attack. On the way, while still on the trail, I stepped into dog poo that I didn’t know was there. I didn’t discover this misstep until later.
After I was home, and once I came back out of the washroom, that’s when I noticed the dogs mess on my boots.
I had rushed home to go to the washroom due to my inflammatory bowel disease, all the while covered literal crap. The irony is not lost on me.
Once again due to this disease, I couldn’t finish my walk. A simple short walk with my dog. And now I am covered in #$&@$. I got angry as I cleaned my boots, my porch, my front steps, my car.
I couldn’t face my family. I went out on my own. My face blank. My emotions raw. The famous straw that broke the camels back.
I eventually came home. My daughter smiled. My hubbie catered. But I was still not okay. I stayed away from them so they wouldn’t have to see it. That night I vented to supportive friends. I slept 17 hours. The next day I rested too. The following night I slept 12 hours.
Today I see things clearer.
If you ask me how I am today I would tell you the same story but I would add…..
I did walk my dog despite having a bad day. Sure it ended upruptly and I was in a mess, but I went outdoors, I pushed through the pain, and I walked my dog. This means I achieved my goal. And come on, the irony was pretty funny in retrospect!
I came home and I was treated with kindness. I had friends to talk to. I have a hubbie who loves and cares for me. I have a daughter who, while being a challenging teenager, is also so talented, funny, loving, smart, athletic and creative in her own special ways. I had a cozy bed to crawl into and then the privilege to sleep for hours without any interruptions.
We have to remember that things will change, our trials will pass, that one, two, three bad days doesn’t mean good days are not coming. It takes a lot of work to see the positive in a negative situation. When you live with fatigue, and use up too many spoons over a period of days, you will break down mentally, you will break down physically, and your overall health will be impacted. This in turn impacts everything around you. Today, I promise myself I will try to be better at resting, at listening to my body, at expecting less out of myself while I deal with my current health struggle.
I can do this. And in this time of pandemic, I also know you can do this. You are not alone. Reach out. Rest. Be gentle with yourself. We can be strong and still need time, rest, help, love, kindness, support to move forward. It’s takes humility to accept this help, which is also a sign of mental strength and resilience.
I know many of my posts are sad, but the name of my blog is sadness and joy. I named it that because while I am certainly fighting sadness daily, and the topics I write about can be sad, I always try to find the joy. Joy is also my middle name, so there’s a not-so-secret inside message for my blog title.
Today I felt okay considering the rough night I had and the many rough nights I’m sure are ahead. But you do what you can when you can. You don’t wait. If you wait too long, you may miss the joy in life and only see the sadness.
Today I went for a walk in nature with my dog and while practicing social distancing with fellow travellers on my trail.
I heard birds chirping, squirrels playing, water running and the wind in the trees. I saw colours everywhere including the blue sky, the green trees, the white water, and the brown leaves. I smelled the aroma of the forest, the water and the melting snow. I felt the spray from the river, the wind in my hair and the slippery crunch of the melting snow under my feet. I tasted coffee from my thermos which brought me comfort and energy as I walked.
This walk helped me rediscover that I am not alone. I felt comforted as I experienced the rush of various sensations and I knew I was ok. The earth is beautiful. Nature is healing. I am tired, yes, but I am also revitalized. I will not likely do much for the rest of the day but what I did, was worth every ounce of energy expended.
I hope you enjoy a few pictures from my walk below. In this time of social isolation we can still be one with nature. We can enjoy the moments we feel good to the fullest. We can remember there is always joy within sadness. We can remember that we are one.
When pain and nausea wake you from your sleep, it can be a horrible experience.
I was busy the day before. I overextended. Which results in lying awake, in pain, and unsure what to do.
The cramping, nausea, pain, is unbearable.
It hits in the abdominal area, but ripples throughout the whole body and soul. Like a pebble thrown in a pond, the whole pond feels it. But this is no pebble. It’s more like a boulder.
My face is on fire. My arms feel numb. It’s the middle of the night and I’m alone. My partner sleeps across the hall to reduce contact due to the virus. I wish he was here. I try to hold off calling him. He has to work in a few hours. I need medication, water, company. I feel very alone.
I am scared. I do not want to be an emergency. I do not want to go to the hospital amongst the virus.
I’m awake now and will not sleep again until this passes which will likely take hours.
No matter what supports you have, we are all alone. No one else feels your pain. Empathy can only do so much. But I feel comfortable knowing I am alone. I would not wish this existence on anyone else.
Tomorrow I will do nothing. It feels like my body, my disease, fights me every time I push to do something. It reminds me of my limitations, and punishes my activity. I am disheartened, distraught, awake, and alone.
I will rest tomorrow, I will recharge, and prepare to fight another day.
In 2010 a friend of a friend witnessed my flare-up. I was very sick. He told me I wouldn’t survive if this was a survival of the fittest environment. That hurt me on so many levels.
I thought it was insensitive, callous, unnecessary, cruel. But I also thought, he was right.
Knowing he was right was hard to swallow. But I pushed it down, all the feelings that come with realizing you are ‘less-than’. With feeling like a burden. Feeling like I was a waste of space.
I recovered and resumed life within a few months in 2010. I put those thoughts away as I enjoyed remission again.
Now, late at night, in pain, in the midst of a pandemic, in the midst of a flare, feeling vulnerable and alone, those thoughts return. If society shuts down, if this gets worse, if there are no medications, no surgeries, I will not survive.
That’s the slap in the face I keep avoiding, I don’t want to face this truth, but I have no choice. Truth is funny like that.
I like to imagine if this was an apocalyptic event, a ‘walking dead’ scenario for instance, that my partner and I would love living at the cabin, farming, gathering, hunting, living. It would be hard work but we would do it together. The truth tells me that would not be possible. Crohn’s disease would stop that from happening. Like years ago, myself and others would simply perish from our diseases.
I like to imagine travelling the world. But then I remember medications, doctors, flare ups. I’m not sure I can.
I like to imagine a long life with my true love. But then the truth hits me and I recognize that is not likely going to happen.
This is a heavy burden to carry. I use humour to lighten it, but it is still dark.
If this was a mental battle, I might win. But physically I am weak and vulnerable and truly angry. I am not the fittest, and this is a time of survival. Every day you hear the older population and immunocompromised people are at highest risk with this virus. At 43 years old, that’s me. I am scared. I am reminded multiple times a day of the comment from 2010. Reminded I am the weak one in the herd. The reporters tell me. My partner tells me. My family tells me. The health officers tell me. I know it, but I hate it. I can’t hide from it. But I want to avoid it.
Survival of the fittest is truly our current environment. I hope I will survive.
Most days it’s a struggle. To get up, to move, to talk, to cook, to do anything of value. It’s been close to three months now that I have been home waiting for surgery which should have happened two months ago.
I am pushing myself to be as social as possible, write, share, text, post, drive, walk, call, video chat. Honestly all I want to do is curl up in a ball and turn the world off. But I won’t let myself do that.
I always was cautious about hand hygiene and close social contact such as hugging, because I have been immunosuppressed for 20+ years. Now the whole world has to be cautious. Before this virus people would get offended if I told them to back off if they were sick, now people won’t come near me in case I am. It’s kind of ironic. It seems like my lifelong struggle has escaped and infected everyone. Like suddenly everyone is fighting the same demons.
We all, globally, are suddenly having to face our own mortality. Our vulnerability to an invisible enemy is now tangible. Many people never experienced that before. I feel it’s one of the aspects of my own battle with chronic illness that has made me stronger. Everyone is stuck at home, healthy or not. The isolation and constrictions are impacting everyone, it’s not just me anymore. I think this may make the world a bit stronger, a bit more empathetic. At least I hope so.
Daily it’s still a struggle for me and my personal battles. Driving and walking, on my good days, have been keeping me sane! I don’t want to crawl into a ball and stay in bed. I am also responsible and will be respectful of social distancing. I have always done that to some degree and now, more than ever, will ensure I do. But when I hear of scenic beaches or parks being shut down to prevent people from driving there it makes me feel trapped more than ever. I need my escape. There are many more weeks ahead for us. Have groups been gathering at these locations? This is not acceptable. The more we gather the more people will get sick and the longer we are stuck like this.
So I’ll keep struggling along I guess but in my opinion, this virus is not the only threat to our population right now. Mental health deterioration and mental illness is also a threat and should not be ignored. Connecting with nature is a part of good mental health for many. I know it’s a huge part of my wellness. Connecting with friends and family is happening in new ways. Celebrities are performing concerts from home for the world to enjoy. But the overwhelming feeling of isolation, lack of job or income security, trying to explain to young children and teenagers why they can’t see their friends, and just the grasping of our mortality and vulnerability, is a lot.
I am seeking relief from this pressure. I know others are too. Let’s band together and share our joy in this time of global sadness. Let’s follow the restrictions but also follow our hearts. Let’s unite and be thankful for social media and our essential workers. I’ve started to share old photos online for my friends to enjoy, to take us back to a better time and distract us from the current reality.
Let’s keep moving forward and plan for our gatherings to come, because I think we will all appreciate those little things a lot more when this is behind us.
Stay safe everyone. You are not struggling alone. Xo
Today I rested for four hours after getting up to see if I could go outdoors today and enjoy the sun. I didn’t eat. I just rested.
Around 1pm I felt up to a walk so my puppy and I went to a local short trail, a place I knew would not be busy and was close enough to home that I could leave if my tummy failed me.
I walked my puppy on the trail. I sat and watched the waves roll in from our beautiful Atlantic Ocean. I took pictures. I shared on social media.
After my walk, I visited a friend. Of note, we practiced social distancing and were brief and safe. It felt good to visit, even within our current restrictions.
I also did a lot of driving to achieve these two activities. I plan to go out again tonight. I have just eaten and need to monitor the situation but I’m hopeful.
I am in the midst of a flare-up. I am off work. I spend most days resting. Many days I can’t trust my body to walk. I have days of terrible pain. But today, after planning, resting and not eating I was able to be active and a bit social.
I will not apologize for sharing these good days with the world. They are precious. They are few. They do not mean I’m better. They do not take away the bad days. But they are unapologetically amazing.
Here are some pictures of better days to remind us that we live on a beautiful planet with so much to love. Many of these pictures were taken while sitting or standing with groups of people. In time, those activities can resume. There is so much to look forward to. I hope you enjoy!
Stay safe everyone! I can’t wait for our next adventures.
I did it! I went out, to the clinic, and you know what? Everyone seems to be behaving within the guidelines and I felt relatively safe.
The clinic and I came up with a plan for home-based injections to reduce social contact. I did my injection today with the nurse and future injections will be delivered to my home for self-injection. Blood work could not be done as urgent bloodwork only is approved in our province right now.
The nurse was lovely. She asked all the right questions and all staff were practicing social distancing and hand hygiene. I was listened to and cared for, despite the chaos we live in right now. The clinic wasn’t as busy with patients because they are staggering appointments to promote social distancing.
Once home I had a big nap and then enjoyed supper and family time, especially pet cuddles.
All in all, today was a good day despite the disease being very active and wearing me down.
It’s a lesson to me. To not worry until worry comes. My dad and my mom taught me that and it’s truer than ever today.
Yesterday I dreaded for tomorrow, but tomorrow is here and it isn’t so bad.
Yesterday I went for a drive alone late at night. There was no traffic. I drove to a local historic site and gazed upon it. The Christmas star is lit again for all to see, as a symbol of solidarity and unity as we take on this invisible threat.
I looked upon a city, sleeping. A city with less activity. A quiet and disconcerting sight.
Yesterday, my chore for today was overwhelming. Today, I woke up early due to racing thoughts about going out to the clinic. But I came to realize, I can only do what is within my control to do. Our local public health emergency will hopefully reduce my risk, I will wash my hands and practice social distancing. I am sure the nurses will as well.
Yesterday, today was a dream. Today, yesterday’s fears are simmering under the surface. I know I can do this. My partner goes to work every day at a hospital. He is considered an essential worker. I can go to one appointment.
My immunosuppression doesn’t mean I’m at higher risk to catch it, it means if I catch it I will not be able to fight as hard as others to beat it. So, I’ll follow recommendations from the experts and do my best to lower my risk of getting it.
Ok, it’s show time. Yesterday is gone, tomorrow is now today. I will be okay.
A chore which cannot be delayed, postponed, or ignored like the dishes.
And this chore has suddenly become more terrifying.
What is this chore? I have to get my Stellara injection at the clinic and I have to get bloodwork.
Why is this terrifying? Many reasons including but not limited to:
1- I need this medication for my chronic health condition so I have no choice but to go.
2- This medication is an immunosuppressant so my immune system will be kicked to the curb, so to speak, directly after treatment.
3- The chore requires me to go out in public. I have to drive into the city, go into a clinic, see other people, touch other people, breathe other people’s air.
4- Due to the recent worsening of symptoms, my specialist has doubled my treatment. Now I will get this injection every four weeks instead of every eight weeks. This means more travel out of my house, more social contact, and more immunosuppression.
Prior to the global pandemic I would dislike treatment day. I didn’t like it interrupting my work day. I didn’t like the pain of the medications and weakness thereafter. I feel silly about that now. I wish I could go back. Because now I don’t dislike treatment day, now I am scared to death of treatment day.
Tomorrow is going to be a big day filled with risks. Risks I have no choice but to take.
If you can stay home, please stay home. There are many people like me who need life saving medications and have to venture out to clinics. The less people we see, the less chance we get the virus. If we get the virus, our chances of fighting it are low. We are at highest risk during this pandemic due to weakened immune systems. Thank you.
Rainbows are a sign of hope, love, and equality. They are the beauty in the midst of a rainy day. They are the symbol for diversity, pride, and peace. They show us that something good can come after something bad.
During this pandemic many ideas are popping up all over the world to help us come together as humans, as a global community, while also staying physically apart. One idea my family and I have really latched onto is regarding rainbows.
I found a post online suggesting local neighbourhoods put rainbows in their windows for families to seek out during walks and drives. Due to isolation, and social distancing, children are home without their friends. Parents are also missing friends, family and socializing. This is a fun and easy way to bring communities together despite being apart. The goal? Count as many rainbows as you can find on your walk or drive either alone or with your children/families. See who finds them first. Make it a little friendly competition. Capture them on your phone and share on social media. And also feel reminded that the homes with rainbows are standing with you, that while physically alone you are emotionally bonded with others.
As a person who is home and immunosuppressed, and as such one of the more vulnerable members of the world right now, I feel that anything that can help alleviate the feelings isolation, promote social distancing, and support my own family in fun and engaging activities is worth its weight in gold. And we know what we may find at the end of a rainbow 🤩.
So my family all chipped in and we made a big rainbow. Hubbie drew it, I measured, my daughter held it tight. My daughter and I made the colours and painted. My hubbie hung it in the window and added holiday lights.
I would love this trend, and other trends like it, to spread quicker than the virus.
Kindness and love, unity during separation, hope and equality, beauty after a storm, all of this and much more is what our rainbow stands for. I’d love to see you stand with me.
Let me start by saying, this last 24 hours have probably been the worse of my recent flare, with 10/10 pain, vomiting, specialist consult and treatment changes. I’m ok right now and looking forward to seeing improvements with a new plan. It’s a scary time to be an urgent surgical case… so I think I need a laugh. This is one of my most embarrassing moments. While totally unrelated to Crohn’s disease, I hope this makes you giggle as much as I giggled writing it.
I think we all have those funny stories in our lives that never get old. Let me set the scene. I am sitting with my partner and child in a fancy restaurant for brunch at a hotel in the capital city. It is summer, we are wearing shorts and tanks.
As we finish up, I stand first. I feel something on my feet. I look down. My shorts are around my ankles and I am standing in the middle of the restaurant in my underwear.
I see the waiter just behind me as I rush to bend over and pull up my shorts. The few seconds it took to bend over to pull up my shorts WHILE IN MY UNDIES IN PUBLIC felt like an eternity. I say loudly to my family, so others can hear, ‘I’m so glad I had my swimsuit on inside my shorts!!!’ We all know I wasn’t wearing a swim suit, Hahaha.
We quickly left the restaurant and didn’t look back. Laughing as we walked/ran.
I’ve written so much since this flare-up. I’ve explained my pain and my experiences in words. I’ve longed for good days. And I’ve cautiously celebrated them when they came.
Then I had a two week period of being ‘ok.’ It was good. I walked the dog three times. I think she started to lose her winter weight, haha. She was certainly happy to roam around the neighbourhood again. Don’t worry, with a leash.
But then a few days ago I could tell it was over. There was an expiration date on feeling ‘ok.’
Now I lie in a fetal position with my heating pad and family tending on me diligently. I am not sure if I should go to emergency in the current viral crisis so I struggle through. This pain is severe but I tell myself it will pass. I write through the pain. Writing has become my friend, my rescuer, my saviour.
There is something so comforting about curling into the fetal position especially with my heating pad. You count through the seconds, you regulate your breathing as the pain hits you like a concrete slab in the gut. But you hold on tight, like when I was a child in my fathers open fishing boat, as we braved the storm and held onto the wood for dear life. I roll into a ball and tell myself this storm will also pass.
I have always had this little spark in me, like a little seed of hope and joy.
It was a part of who I was even at a young age. Other adults in my life would tell my parents how I was always so pleasant and smiling. I tried to be friendly with everyone. I never really noticed it when I was young. Others did.
As I grew older I started to be more introspective and I noticed my little seed had grown into a small tree. A tree of hopefulness. A tree of joy. I learned to nurture it. I used it to help me see the positive in every situation.
I experienced challenges at a young age. My little tree shrivelled a bit but I worked hard to nourish it. I paid attention to it. I helped it flourish until it grew, with me, into an adult. An adult who would be blessed with 12 years remission, a full education, a career, a spouse and a beautiful child. The tree maintained its strength even in hard times. I kept it safe, and continued my goal to be a positive force in life.
Sometimes I could sense the tree was vulnerable and needed extra shelter, nourishment and care. I worked to give those tools to it, as without my hope, without my joy, I had nothing.
Over these last three years of this building flare-up, my positivity, my hopefulness, has been challenged. It has been challenged by personal stressors, my daily health issues and by the frustration of our slow moving healthcare system. I have kept trying to keep my tree alive, but it began to shrivel as I shrank. It began to weaken and lose its leaves as I got weaker and sicker. It was only a sapling when I saw the surgeon in December of 2019. The news from the surgeon nourished my little sapling. It cautiously began to revive.
But since then, delay after delay, sickness, weakness, invisible fire, pain and fatigue has been difficult and it’s harder to have the energy to nourish my sapling. The global issues are also detering it’s growth.
Now I fear it is merely a seed.
But nonetheless, a seed itself holds hope of regrowth. Within a seed is power to bring forth life. A seed is what I started with. I will hold it close until I am able to spare energy to nourish it and watch it grow again.
I felt like I was isolated before the virus. For the last 10 weeks I’ve been home, alone, trying to cope, fighting a flare-up of Crohn’s disease and awaiting surgery which is constantly postponed. But my visitors and my family have helped me so much during this time, keeping my mind active and my mental health strong. Unfortunately, now I have to decline friends and family who want to visit. I can’t or shouldn’t pop to a friends house. I am really isolated now, but so is everyone. And yet, it gets worse.
My partner is an essential worker, so he is on his normal schedule at a hospital. Due to his working, we have basically zoned our house into three areas. I won’t be sharing a room with my love tonight, or any night in the near future.
I’m home with my teenager who wants to socialize. She can’t right now but yet others are out there with friends and posting online about it. Parents, we need to be consistent here. Young people need to stay home too.
My partner and I joke, he thinks I won’t resist him and the comfort he provides me at this time when I am unwell and a bit sad. But I will.
Why will I resist? Because of self-preservation, as I am immunosuppressed and awaiting urgent surgery. Because I want to be a good example to my teenager who is desperate to go out with friends but we say firmly she cannot. Because I want to ensure if I do get sick, my partner will be able to live with the fact that we took all measures to prevent it.
Please keep your children home. Please practice social distancing. Please remember the most vulnerable and avoid contact. Please keep up to date on recent changes so you can be best prepared for the situation in your country or region.
Again, stay safe. Together, yet apart, we will get through this. My thoughts and love are with you as we venture into this uncharted territory.
But I tell myself to keep going. Keep trying. Seek help. Talk it out, both with loved ones and with myself.
No matter how bad it seems, there are still blessings to count if we focus really hard. There is joy to be found. I’ll be searching for it today. I hope you all find joy even when you feel like things are hopeless.
So I will look at my feelings of failure and reframe.
I have a warm home, a loving partner, adorable pets, my education, food to eat, clothes to wear. I live in a safe town. We have free healthcare. I have financial support during this time of illness. I have friends. I have a good job- even if I can’t perform it right now, I will again as soon as I’m well. And despite everything, I have my sense of humour and resilience to keep going forward.
Send me your funnies today. I need them more than ever. Xo
I run away. I tell them to stay away. I am fearful of getting sick. Some look at me strange, thinking I’m just odd. They don’t understand what my situation is.
Life with Crohn’s disease means ongoing treatment with immunosuppressant medication. This means I’m less able to fight infections. This puts me in the same category as young children and the elderly when it’s flu season for example.
And now, with the global issues that are ongoing, it is even scarier. The idea that my disease and life-saving treatment actually increases my risk of things like cancer, blood clots, and serious infections, all of which can lead to death, is a lot to live with.
Usually it’s something I simply practice caution about. Washing hands, avoiding sick people, etc. Now that I am home awaiting surgery, which is again delayed, and experiencing a flare-up, I am weaker than ever. This global issue is also making the risk of severe illness or death higher.
Living with life and death decisions since age 22 is tiring. Now, more than ever, it is scary.
So I’m following advice and staying away from crowds, using masks and hand washing as my defence, and feeling even more isolated.
I hope the global issues settle soon, that we can stop the spread and keep people safe, and, on a personal note, that nothing else delays my surgery. It’s been months of waiting and isolation is getting harder to cope with.
It takes courage to put your feelings down in written form, and to then share it with the world. Many people have commented about my blog posts telling me how true they are, how they bring forth feelings of both sadness and joy for the reader.
My posts are brutally honest and I think they help others understand this disease a little bit more. I write from my heart. I feel relief when my pain turns into words and then it seems a little lighter for me to carry alone. So I’m not sure if it’s courage or just a selfish need to spare myself from going through this alone.
My goal isn’t to share sadness, but to share my story. If you know me personally, I love a good laugh. I am giggling pretty much all the time. I love jokes and silliness. So while this disease and the suffering I experience makes me feel sad, I always work on trying to find the joy within the experience. My writing doesn’t seem to show that silly side of me at all. It shows the side of me that is more vulnerable. The private side of me, versus the public side.
My laughter sometimes is a response to feeling anxious or uncomfortable. In this place where I can write about my experiences, that anxiety and lack of comfort goes away. Although the world may read my story, it feels like a safe space to share.
It takes courage to live every day with an illness. So perhaps I am courageous. Perhaps the disease itself allows me to have the strength to share my story so honestly. All I know is writing is helping me heal, helping me cope, and also helping me to spread awareness which I am passionate about.
Like my flesh has no skin, no barrier to the outside, like my emotions are visible to the world
I did too much
I pushed too hard
I used about two weeks of energy in two days
I feel an exhaustion that betrays language. There is no word that will suffice to explain what I feel. Tired, drained, fatigued, lethargic, sleepy, weak. These are not enough.
I have less tolerance for drama and unkind words or actions. My patience is non existent. I just want kindness and love for everyone. I am hurt so deeply when others are negative. But its not them, it’s me. I am raw.
Like the open wounds inside my body, I feel like an open sore. Everything hurts it, stings me, infects the wound and leads to further exhaustion.
I don’t have energy to talk, but I keep talking. I don’t have energy to write, but I am trying. My painting stands untouched. I don’t think I can make a cup of tea. But I don’t want anyone to make it for me.
I am too raw for company, too lonely to be without it.
When I was younger, I thought loss meant losing a loved one.
Through growth and time and struggle I learned loss was so much more.
Loss can mean losing your freedom, health, friends, family, your home, your mind, your body, your job, your dreams.
But while all loss requires grieving, and experiencing many uncomfortable feelings of doubt, fear, and vulnerability, going through that process can also help us learn what we have gained. Things like understanding, empathy, love, respect, experience, skills, and strength.
While I lost my health many times I have gained a new way to look at life. To live each day meaningfully. To enjoy every moment with those you love. To work hard but also play hard. To take care of yourself so you can take care of others. I’ve gained the ability to accept help. I have an understanding of adversity which I now use to help my clients, friends, and family who may need an understanding ear.
I have learned to never give up, to just keep going, and to be kind not only to others, but to myself.
I watch the wind blow the snow. I look at the snowflakes on the window, on my glove, on the ground.
I imagine the sensation of these snowflakes dousing the feelings I have inside my body- my inner burning, tearing, and spasming body. It would be so refreshing to be cooled off and pain free. I would be numb if lost in this storm. Numb would be better than this.
How ironic that I stand shivering in the storm but inside a furnace burns. Inside my heart and soul I don’t know if I can face another day.
But like all storms, it eventually settles. There is a calm, quiet serenity after the wind and snow stop. And like the storm, I trust my illness will also settle. I will tame it, corral it, harness its power and redirect it.
My strength can empower me to keep being a fighter. No matter the weather, I am sheltered by my supports and know each day I am moving closer to a resolution. Not a cure, no, but a new normal with less pain and more energy.
So I will continue to thrive on both the stormy days and in the calm. I am a warrior.
If you are still reading, I thank you. It has been amazing to review the steps that led me here. This entry will bring us up to today.
After the second CT scan, I see my doctor again for the results. I am so unwell by now. I am in pain. I am working but I have no energy or ability to do much else. The doctor tells me a stricture was identified on the results and was the cause of the failed colonoscopy. He will refer me to a surgeon to see what options there are. He tells me he will switch me from Humira to Stellara, a new biologic medication. He also noted an ovarian cyst on my CT that was also on my prior CT the year before. Both CT reports recommended follow-up. No one followed up because he was the doctor who ordered it. So he has referred me for an ultrasound and he will refer me to a gynaecologist. He says he will see me again after I see the surgeon and start Stellara, in about six months. I try to talk to him about how much this is impacting me. It doesn’t go very far.
After multiple phone calls and follow ups I start Stellara. It is a different biologic medication requiring treatment every two months. The first is an IV infusion, the future treatments will be injections. After the infusion, I have the three best weeks of the last two years. I am pain free, energetic, and can do things I love to do like exploring the parks and hiking and biking and swimming. It is amazing, until it isn’t.
When the Stellara wears off and I feel symptoms returning, the pain, burning, weakness, nausea, fatigue, I realize it is hopeless and I spiral down, down, down. I have a real mental health reaction to this torture and really I am not sure I can keep going. I had a glimpse of me. I also now realize just how much I was carrying before the three week reprieve and recognize I’m not sure I can keep it up.
I seek help from my family physician who is so attentive and caring. We discuss our plan. I explain my pain. There is concern of a fistula developing. We agree I will wait to see the surgeon and then decide if I should be referred for MRI. He gives me a note for work for periodic absences due to chronic illness. I am again so defeated.
While waiting for the surgeons consult, I bleed out at work. I have to leave urgently. In fact I have started to miss a day here and there since Stellara stopped working. This is the first time in 9 years that Crohn’s disease has affected my work capacity and it is very hard for me to swallow. It is a sign that once again I have to rely on a slow moving healthcare system to react to emergency rather that be proactive based on clinical findings.
I end up going to emergency because of the bleed. They treat me so well. The nurse has a friend with Crohn’s. The doctor is kind, gentle, thorough and he examines my rectum to see if there any obvious signs of fistula but there are none. He recommends seeing surgeon and following up with my doctor.
I called my doctors office, he hasn’t scheduled to see me until February 2020. I tell reception what is happening. She squeezes me into his clinic on December 12.
I see the surgeon on December 5 2019. She is fabulous. She tells me I need surgery and it will be completed within two months at the latest. I need a bowel resection. The area of the bowel that has a stricture needs to be removed as soon as possible. I have a 40% chance of cancer developing if not. She thinks the reasons for all my pain, bleeds, and other symptoms is due to the stricture as well as active inflammation. We sign all the paperwork and I leave feeling shocked. I am shocked because I finally feel like I am believable, that there is something concrete that can be done to help, that she has a plan and it will get me back on track.
I allow myself a few days to absorb the information, only a few because I know I have to get ready to be strong and prepare for surgery. It is a surgery which will require at minimum 8 weeks recovery after a week in hospital. I have 25% chance of a temporary ostomy. She plans to do it laparoscopically.
I see my doctor a few days after the surgeon. I give him the update. He didn’t know I was having surgery. I tried to tell him how unwell I am. Again not much direction was given.
I continue working, missing a day here and there. But I am driven to work to the surgery date. Unfortunately Crohn’s had a different plan.
My symptoms continue to worsen. The more I work, the worse I feel. Too many bathroom breaks, too much pain, fatigue, weakness. I honestly feel like a victim of Crohn’s disease and a slow healthcare system. I stop working at the advice of my family doctor.
I call the surgeons office to update them on my deteriorating condition, and get a tentative surgery date of February 3, 2020. Unfortunately, due to a week long state of emergency in my town, everything shuts down while a blizzard envelops us in close to 100 cm of snow. Then once work and life resumes after the storm, I find out the surgeon has broken her elbow and everything is on hold.
It is now March 2020. I am home, having some good and some bad days, but unable to work and my surgery feels like an illusion. I sit home in pain and have no ability to speed anything up or make myself well. I am totally at the will of others.
I keep waiting. I am told I have a lot of patience, but this is really testing that theory.
At the end of the day I know I have many blessings. I will continue to be as strong as I can in the face of the waiting. As a wise person once told me, two truths can exist at once, you can be strong but still need help. And so I will continue to persevere and lean on my loved ones, try my best to not feel guilty and prepare for surgery which will come in time.
The second year of this flare-up was perhaps the most frustrating. I end up with a sinus infection and have to delay my Humira treatment which delays the special bloodwork.
The bloodwork eventually happens, and a lovely nurse comes to my home to complete it. The goal is to measure if Humira is in my system. I’m sure it’s more complex than that, but I am not a doctor. The delays were necessary because if you have an infection, you have to suspend Humira injections. Humira is a biologic which lowers the immune system. When immunosuppressed, you cannot fight infection as well which could lead to life threatening situations. So, once I’m healed and I have resumed Humira, the bloodwork can be done.
Once the bloodwork results are in , I see the doctor. I tell him I am steadily declining. I explain my daily symptoms and pain, and I ask for help. I ask can we look at some change in treatment. He agrees and we change Humira from once every two weeks to weekly. My drug plan will only cover 26 needles annually, and I now need 52. Luckily Humira has a program and sends me the extra needles for no cost.
After doubling my dosage, I think I see improvement but it doesn’t last.
I go on a trip with my daughter to Toronto for a figure skating competition. I end up in emergency there due to abdominal pain that wakes me from my sleep. It is like no other pain I experienced in the past. I don’t know what caused it or what the problem is. I start to worry about bowel obstruction.
The doctors in Toronto think it is my gall bladder. They complete an ultrasound twice. The pain starts to settle. On the emergency doctors advice, I go to a surgeon once I’m back at home. Once I obtain this appointment, the surgeon tells me he thinks it is actually my Crohn’s disease and to see my doctor about it. He explains that Crohn’s pain can mimic gall bladder issues and it is important to rule this out before pursuing gall bladder removal.
I see my doctor, and I explain what has happened and he orders another scope. Three months later, I have another colonoscopy and I am so unwell I can barely get the prep finished. I am so sick and I swear, I will never ever have another scope. I cannot tolerate this prep anymore, I’m getting worse, no one is truly helping me, I feel so lost.
Colonoscopy day is here, and again I am in terrible pain. The IV works this time but the doctor is unable to complete the scope. My bowels are too narrowed. He couldn’t see very much, he took some biopsies and says he does not think it’s cancer, but it could be. He noted significant narrowing in the descending and transverse colon. He actually was unable to get to the transverse colon and only partially up the descending colon. He is sending me for a CT scan again. I reminded him of my allergy to CT scan dye. I ask about MRI but he says CT is what is needed.
A month later. No appointment. I call the CT department. They again have no requisition. By now I am so defeated. I call the doctors office. It was not sent. They assure me it will be sent right away. More unnecessary delays cause increased feelings of helplessness and defeat. I worry this Crohn’s issue is going to impact my life again. I want to tackle it before it goes haywire but I keep hitting walls.
I eventually have my CT scan and they are fully aware of my allergy this time, which is a small blessing. Again the technician says that an MRI would be better.
I feel like I am playing some weird game of delay and ignore. Like I’m treading water in a never ending pool. Like no one hears me, sees me, or believes me. This is becoming almost too much to tolerate.
All this time alone and at home I am reflecting on how I got here. How did this flare up both sneak up on me and suddenly knock me down? I think this has been building for at least three years if not longer. I have written about each year and will post one per day, as it is very lengthy. Some of the information shows how delayed my healthcare interventions were which is quite frustrating.
Since 2017, I could feel a flare coming on. I wanted to avoid a life threatening issue, as I know from experience that my Crohn’s disease is severe when active. I want to be proactive, not reactive.
I go to see my specialist. He suggests we do a colonoscopy and see what is happening.
Months later, and it is finally colonoscopy day. Prep is the worse!! After two days of torture with nausea and vomiting and drinking the awful prep, I’m ready to go. Finally at the hospital for what is likely my 20th scope and they can’t find a vein. The IV takes multiple attempts. The nurse says it’s good, but the IV doesn’t seem ‘good.’ They give me the meds but it isn’t helping. I scream in pain. They don’t give me any more meds, like they normally do. Or perhaps they did, and the IV is not working properly. All I know is I feel the scope scraping my insides. I do not have a healthy bowel. I have scarring and ulceration and narrowing. This is absolutely my worse experience ever with a scope. The doctor tells me there is active disease. He tells me I need a CT scan.
One month later but no CT appointment yet. I call CT bookings. They have not received a requisition. I call the doctor’s office. It was never sent. A week later, I call again. Reception tells me it will be sent today. This is now five weeks of waiting which was unnecessary. I could have had my CT by now.
I get my CT appointment. I arrive. I had not gotten any instructions in the mail, only the date and time. They tell me I need to have CT dye injected. I will be unable to return to work today. I have to drink liquid which may cause diarrhea. But here’s the issue: I am allergic to CT dye. Everyone knows this. I tell them at every visit for the last 20 years. The staff try to fix it but in the end I’m sent home without my CT being done.
I get another CT appointment. After multiple calls to the doctor and CT department to ensure the technician knows I am not having dye, I arrive at my appointment. But yet, the technician again has no idea I am allergic to dye. I demand he calls and figures this out today as I am so done with waiting. Finally my scan is done but I’m told an MRI would be better for me. This feels like a slap in the face as there is more waiting to be expected. I feel like I had to fight just to get the CT and after months of fighting, it may not have been the correct test!
I see the doctor for follow-up. He noted some issues on the CT. He will try a stomach pill, and have my blood work specially tested for humira to ensure the medication is working. No MRI planned.
Over the years I have been shocked many times by so many insensitive comments made towards me about very personal issues such as diet, weight, and overall healthy choices. But I recognize Crohn’s disease is not well known and the general public do not understand the way those comments can impact a person living with this disease. I’ve compiled a list of some examples of things that have been said to me as well as some options to try instead. I hope this is helpful.
What not to say
1. You look like you’ve lost weight! What’s your secret?
2. Why are you always tired?
3. You only eat crappy food, why don’t you try a salad?
4. You miss a lot of work, maybe you aren’t cut out for this.
5. Did you know there are vitamins / drinks / medications you can take to cure Crohn’s disease?
6. I heard marijuana helps cure Crohn’s, l’ll send you the link.
7. Oh I have a (insert a relationship title here) who has Crohn’s and once she became vegan her Crohn’s was cured.
8. Why are you depressed? Is it because you can’t handle the pain?
9. Have you tried changing your diet?
10. Why are you eating that? No wonder you are always sick.
1. Don’t comment at all on someone’s appearance unless they invite the conversation. Or perhaps compliment their smile, not their weight fluctuations.
2. How are you doing today? This allows the person to choose to tell you if they are tired or well, instead of feeling judged for something out of their control.
3. Say nothing about other people’s eating habits, you don’t know their full story and it’s not your business.
4. Can I help you in any way?
5. Crohn’s has no cure. No medical advice please, unless you are an actual doctor
6. No links please, I have a treatment plan and professionals taking care of me. We have all seen the links. They are not valid medical advice.
7. Every case is unique, but there is no cure for Crohn’s disease. Perhaps ask me about Crohn’s, I have a lot of knowledge after 22 years of fighting and educating myself.
8. Would you like to talk about how you are feeling?
9. Diet does not cause or impact Crohn’s disease progression. When it’s active, certain foods will have to be avoided but it is very individual. This question is very frustrating. See option #3.
10. This sounds like you are blaming the patient for their disease which is not true or helpful. See answer #9.
I cannot live without my multiple heating pads! It really helps with abdominal pain. Sometimes I alternate with my puppy, when she is not hyper, and she will lay across my tummy and she works just as well as the heating pad. She comes with extra perks such as cute cuddles.
◦ Water, lots of water
Dehydration is a daily thing with Crohn’s disease. Drinking enough fluids to make up for the inflammation and bathroom trips is an essential part of feeling well during a flare. This can be difficult when there is also nausea.
Trying to get as much nutritious foods into your body somehow is another key. This is very difficult when you can’t tolerate healthy veggies and fibre or nuts, seeds and multi grains. Smoothies and multivitamins can help. This is a daily challenge which is also impacted by nausea.
◦ Hot baths
A hot bath is so good for tummy pain and rectal pain as well. It is a lot of effort so when fatigue is an issue, a sitz bath may be a quicker alternative for rectal pain only. I really enjoy special soothing bath bombs lately and it also helps calm my mind and keep me focused.
◦ Cozy clothes
Right now I rarely wear underwear…. I know I know, too much information. But pressure on my abdomen of any kind makes my pain worse. So boxers and leggings and jogging pants are my go-to. If I’m staying in, pyjama pants are good. But the best is a night dress and warm socks with a robe.
This might be the number one part of dealing with a flare up, getting the proper rest. If I don’t pay attention to my energy levels I can be out for the count for days. I’ve written before about the spoon theory and I live by that. I napped this morning for example as I knew I was going to be busy this afternoon.
This can be in many forms. Financial aid to assist while recovering from a flare can help to relieve or reduce stress and guilt while ill. Family and friends communicating and supporting is so helpful especially on the days you feel down, even when you feel like being alone a visit can really perk you up. A caring employer, pets, and support groups both online and in person can also be great additions to your support network.
◦ An individualized treatment plan
My medical treatment plan needs to be for me, not the usual scripted plan. Each case of Crohn’s is unique and has to be treated as such. When you have the right treatment plan, it can truly change your quality of life. This includes medical professionals, medications, and maintenance such as bloodwork and follow up visits. The plan changes but it is a lifelong journey. Even in remission I had visits every six months, medications every week, and regular colonoscopies every one to two years. It is important to be an advocate and a leader for yourself and your plan.
◦ Competent healthcare providers
You need the right doctors. Those who meet your needs, follow up as required, care about you, have the education, experience and knowledge, and who can think outside of the box. I have been treated by emergency room doctors in the past who were not aware of the complexities of this disease and have put me on the wrong path. I have learned to always check with my main specialist before making any changes in medications or maintenance appointments.
I know this may seem like a general thing, but it is essential when you live daily with a disease that can change on a dime. Be aware of your health, both mental and physical. Pay attention to symptoms and seek help. Staying in tune with your body can save your life.
I had always wanted to be a marine biologist. It’s even in my grade twelve yearbook. I started the bachelor of science program. But I actually completed an arts degree and eventually became a social worker. I know, it seems contradictory. But I think this is something that I can attribute to my diagnosis of Crohn’s disease.
At such a young age of 21, to be so ill and vulnerable, I learned early that it is okay to lean on others and absorb any supports available. I had to meet with ministers and social workers to plan my young future. The social workers in particular inspired me.
So when it was time that I could resume my university studies I was no longer the same young woman who had left school a year earlier due to illness. I met with a faculty advisor and he asked me what I was interested in. We talked in general terms about my work and volunteer and school history and interests. The options that came out were not science and biology. It was the helping professions like social work. So I started a new path that day.
I went on to complete my education and started working in the helping field. It was a good fit. Without the experiences of Crohn’s disease I would not have changed my path. But this new path fit me so well, I feel it was meant to be.