I appear very mellow, requiring a lot to provoke emotion. Once emotion is achieved, whatever the emotion is, I feel it full throttle. Anger, sadness, anxiety, etc. and I don’t know what to with the overflowing emotion or how to calm it down.
Sage advice
As a person with chronic illness I often feel isolated. My illness can pull me from my friends, work, event, huge life moments, etc. As much as I want my “healthier” friends to understand, they can’t. Even after 20 plus years of living with Crohn’s, I feel like I might just be grasping at understanding now. No two days are alike in regards to symptoms, energy, fatigue, what I can eat, how much I can eat, etc.
But I search for people who can relate online, in person, support groups, etc. But sometimes even then, I watch others thrive, and wonder how do I get there too? And then suddenly I feel lost because I want to “thrive” too, but I am not there yet, and wonder if I ever will be.
But I have also crossed paths with people who can relate in real life. An unspoken bond exists where you have a silent understanding of each other’s pain/suffering. You both share physical symptoms, grief for the life you expected to live, and fear for the future because is your health is unknown.
However, after a heart to heart with a good friend this morning, he wrote this sage advice:
“We just can’t give up. It might get bad and we might want too but losing and quitting isn’t an option for either one of us.“
Depression flare
The only way I can describe my depressive episodes is similar to a flare of any autoimmune disease. Right now I am not sure what triggers the episode or how it gets so crappy so quickly. But I guess, the stress of managing life with chronic illness is cumulative.
Like any other flare, the exact beginning and end are unclear. All I know is I experience all the symptoms (sadness, insomnia, poor appetite, case of the idgaf’s, etc) with an undefined end in sight.
As stupid and simple as this sounds, breathing techniques -specifically box breathing, gets me through tough spots throughout the day when anxiety and depression reach uncomfortable levels. (Box breathing is the technique that I worked on with my Cleveland counselor last session).
Breath in 1,2,3,4 Hold 1,2,3,4 Breathe 1,2,3,4 Hold 1,2,3,4 Repeat
In reality, it’s not just the breathing. I also have changed my medication from Paxil 20 mg to Zoloft 100 mg, with guidance from my doctor. Let me tell you that transition was rough, as any medication withdrawal can be.
I also vape medical marijuana for nausea, pain, insomnia, and in times of high anxiety.
Navigating life with chronic Illness is hard. I know I am doing my best.
The buy in
I feel like I am in a constant state of panic and throughout the day the intensity varies. In counseling (local sessions weekly) we have worked on coping strategies such as imagery, meditation, progressive muscle relaxation and deep breathing. Oddly enough we worked on them but I never implemented them at the appropriate times. Somewhere along the way I stopped practicing my coping strategies.
During my last visit with my Cleveland clinic counselor (2nd session), we discussed the guilt I feel for feeling like a financial burden to my mom. I realized that associated with the guilt, I want don’t want this feeling and describe it as wanting/needing to get out of my own body. My counselor asked, what do I do about the guilt. I said I do nothing. I try to escape it as evident by feeling so uncomfortable I want to escape my own body.
My counselor explained that the goal of therapy is not to change our thoughts. Which is ironic because when I first saw him I told him I don’t know how to change my thoughts. The goal of counseling is to learn to live with your thoughts and move forward through life.
Reflecting back on the feeling of guilt. I immediately felt guilt as I spoke of it. My counselor and I discussed what coping strategies I have used/tried in the past and I listed the aforementioned strategies. I was not confident in any of them.
I explained how I felt so overwhelmed lately that I haven’t had time to focus on my mental health. In my head, like everything else in my world, I was waiting for “perfect conditions”. Maybe it’s another escape tactic? But my “excuse” was I have constant appointments I managing myself, which is true. Yay adulting! 😭. My counselor said now would be a good time to develop a plan to use during your appointments. Again, I am finding an escape.
The opposite of stressed is relaxed. How does one relax in the moments of stress? The coping strategies.
My counselor in Cleveland pointed out the physiologic changes to the body when you are relaxed: decreased respiration rate, decreased heart rate, decreased muscle tension, increase blood flow, increased potential for healing, etc. and my body needs healing. If I was a dog, my ears would have perked up at that moment. He had my full attention in that moment appealing to my medical mind (my mom is a nurse and I am a physical therapist).
My counselor suggested I think of the coping strategies like medicine. His “prescription” is to take 2 minutes daily to practice deep breathing signaling the body to tell the brain, you are in a calm state to promote relaxation to further facilitate healing.
This basic need for relaxation was now ingrained in my mind. I need to relax and more importantly, my body does to not only heal but to function better. This was my buy in to the brain-gut connection.
A day of healing
Today’s President’s Day. A day off of work. However, it was not a day off of putting work in towards healing.
I slept in today for much needed self-care. I made eggs for breakfast as I am tolerating them and I adds ton of salt to help with my electrolytes (ileostomy problems lol).
I made an extra appointment to return to the ostomy clinic at Cleveland Clinic. My skin is still pretty red, although it’s not weeping anymore so that is a plus.
I sought out and received puppy snuggles prior to my virtual appointment with the IBD dietician today.
I have learned, I fear eating. Outside of my safe foods which are really really bland, I am afraid to try anything new fearing the possible negative repercussions and pain that could ensue. Having a dietician to slowly reintroduce me to foods again has been such a blessing and something I wish I had known about sooner. It’s relieving some of the anxiety I have about eating. And i am learning it’s ok to try a new food and it not go well. I am not to blame.
After my appointment, I took a hard core nap on the couch for a few hours. (I also took Stelera yesterday and it tends to kick my @$$. I also went hard yesterday, cleaning lol. I think I paid for that today. 🤦🏼♀️ But, no regrets.
Somehow I manage to muster enough energy to make dinner and pack left overs for tomorrow. 🤷♀️ I must have had a hidden spoon lying around. (Refer to spoon theory).
Now to end the night with tv and more puppy snuggles. 💜🐶
Thanks for reading!
I’m back!
I somehow convinced myself that writing failed to benefit me and only to pushed myself into further isolation and to sink deeper into my depression.
A lot happened.
I lost my grandma June 18, 2019. She was in immense pain from what doctors deemed as colon cancer. My mom and I took care of her prior to her passing. My Grandma ended her life the way she wanted, at home. I am so proud we provided care for her so her final wish was fulfilled. She actually passed in my presence and went peacefully in her sleep. I couldn’t imagine the amount of time I think about her and wish I had more time to know her. 💜 I miss her everyday.
My dog, Auzy, passed during COVID in the summer of 2020. His death was harder than I ever anticipated as he couldn’t walk one day. Hardest decision ever.
I had another surgery during the height of COVID in June 2020. I agonized over this decision as my skin was turning purple and abscesses and perforations started within my bowel. I learned that after the surgery confirmed by a resident. I felt validated for knowing my body. This surgery changed my colostomy to and ileostomy.
Life with an ileostomy has been drastically different. My skin is constantly irritated and fire engine red and continuing despite seeking care from multiple specialists. I go through bags so fast that I end up paying out of pocket each month to ensure I have a “toilet.” (The fact that I have to pay for this stuff is another story, lol.)I also learned to laugh through the accidents because they will happen.
I tried to start counseling prior to the shutdown. Video conferencing was not working at the time where I was living. My mental health continued to suffer to the point where ran on autopilot of calling off of work and staying bed. I was fine with that at the time. However, this behavior/attitude was unlike me. I realized I needed help and I sought after it. I have been going to counseling weekly for a year now and I wish I would have started sooner.
I became so complacent with sitting on the couch and shaming myself for everything. In counseling, I am learning to love myself again. For some reason, I punish myself for having a chronic illness and hold myself to unreasonable standards. I am learning to adjust.
I have always know I like to write. Writing is cathartic to me and the social support from blogging blogging has be a crucial support that I shut out for awhile for no good reason and probably when I needed it the most.
Well, I’m back!
Continue to follow my journey by reading my gut-wrenching truth about Crohn’s.
P.S. We also got a new puppies: Macie is 2018 (August) and Roscoe in 2021.
Roscoe and Macie
A thought on Mother’s Day
Today at Walmart, the cashier asked me if I was a mom. My reply was only to fur babies. She kindly responded by telling me Happy Mother’s Day. Then while walking to the parking lot I thought how much her wishing me a Happy Mother’s Day meant to me. Recently I decided I would not have any biological kids of my own. I have had several conversations with my family about this and went back and forth with myself about it as well. I watch my friends and how dedicated mom’s they are by planning activities everyday for their children and the energy required to take care of them. In the meantime, I struggle to take care of myself. I think to myself that I don’t know how I could do that, everyday. Additionally, complications exist with my health background of Crohn’s Disease, malnutrition, and ovarian cysts so it would be a true struggle to have a “healthy” baby. Thus, I will only be a mom to my fur babies whom I love very much. I take care of them the best I can and when I can’t my parents help. I will be forever grateful of their unconditional love. 💜
Does Healthy exist?
In an optimal world, I would like to believe healthy exists. However, in reality, I don’t believe it does.
I am not healthy. I have Crohn’s disease, anxiety and iron-deficiency anemia.
Looking into my immediate family: my dad had a 6 bi-pass surgery and has arthritis in his knees. My mom has arthritis in her joints and her bladder is misplaced despite surgery. She also has undiagnosed anxiety in my opinion. My brother has diagnosed IBS, if not IBD. I know the signs. He has them. My grandmother- diabetes and arthritis. She can barely walk some days. And so on and so forth, I believe I could name anyone and list some form of medical issue. Get my point?
Everyone, and I mean everyone, has some ailment. In most cases, I think we all at least strive for functional, because I am not all that sure healthy will ever be achieved.
That’s my gut-wrenching truth for the day!
Scared
2018 hasn’t started the way I would like. I started the first few days sick and at the end of the month ended up in the hospital for 3 days due to possible blockage/ stool stuck in small bowel. Only to return the day after discharge back to the hospital for severe pain- which now was an abscess the size of a tomato! I was in the hospital for 1 week and had a drain for 3 weeks. I am currently still on disability waiting to see what the next move is as I have two possible other abscesses in my last CT scan.
I am scared of the unknown. What happens next, the potential for more drains, changes of meds, and everything else that comes with Chronic illness.
I have delayed communicating with my GI in Cleveland until I know the full plan from my surgeon here at home. I am fearing knowing he’s going to say I failed yet another drug. I am no longer in remission, or the closest I have ever been to it. I am fearful of hearing the words I have active disease again. This is the fight that keeping on going. Every day is a battle.
I am scared, but I will win.
Poop-ageddon
So I started 2018 a little rocky. I just haven’t been feeling well. I am not sure if it’s because I injured my neck before Christmas, it’s the flu, a blockage, stress, or a flare. I just have a constant headache and my neck hurts on top of my output has been mostly liquid which is not normal for me.
This morning, Jan 3rd, I woke up to poop-ageddon. I had a massive leak, the worst one to date. It was all over my front, my side, and my back side. I am still working on the clean-up. 😂 All I can do is laugh tho and just clean up because shit happens.💩
Keepin’ it real. Thanks for reading.
*photo compliments of google image search
gut-wrenching truth about crohns 