remission

I’ve been thinking about the complex emotions I have when I’m in remission. A few weeks ago, some #UlcerativeColitis symptoms came back for the first time in years, so I’ve gone from CONFIDENT🙌🏼 ---> GUILTY🙄 ---> ANXIOUS😬

If you’ve achieved #Remission , I’m curious which applies to you most: A, B, C or D? If you’ve had more than one “surprising” emotion when in remission, order them from most frequent.

P.S. Clinical remission is shown through testing like a colonoscopy or stool sample. Read more here themighty.com/2021/02/the-mightys-ulcerative-colitis-uc-cond...
#InflammatoryBowelDiseaseIBD #ChronicIllness #ChronicPain #CrohnsDisease #MentalHealth #Anxiety

Normally my minds a mess
Pick up whats useful, leave the rest
But lately I seem to resonate calm
The worlds in shambles, yet there's no alarm
Im bobbing, I'm floating, Im drifting away
But there is very little getting in my way
I'm working, im mom-ing, I’m wife-ing, I’m friend-ing
I can’t seem to process the world might be ending
I’m sure there a method to all of this order
But right now it seems we’ve back burned my bipolar disorder
Don’t get me wrong, I’m grateful for it
I’m glad to be functioning if that’s what you’d call it
It just seems like I’m numb to the things all around
I feel like things are laying in pieces on the ground
Yet here I am smiling, laughing, moving right along
Acting like a part of me didn’t just see something wrong
It’s an odd place to be peaceful in a pandemic
Waiting for the other shoe to drop at any minute
Just needing something real to pinch me for a minute
Need this coping mechanism to let me touch the fire for minute
Just need a minute.
Cause really that’s the problem.
Too many minutes
Too many minutes of calm

A year ago today, I woke up in pain and unable to feel anything in the lower half of my left arm. Over the next few days, I experienced tingling, burning, and muscle weakness, and it became apparent that something was very wrong with my nerve. Whatever was going on eventually took over my other arm, and continued to spread throughout the rest of my body. The pain in my legs was so bad that sometimes it felt like they were both burning and being dunked in ice water simultaneously. There were days where I felt like I could barely keep my eyes open. I had to leave a job as a music therapist that I loved because my body couldn’t handle it. After 5 months of dealing with my symptoms, I was diagnosed with Lyme Disease. At 9 months, I was diagnosed with a rare genetic disorder called Ehlers-Danlos Syndrome, a connective tissue disease. Unfortunately at this time I’ve been told there is no treatment for this illness, however there is a silver lining in the fact that it is manageable, and that the type of EDS that I have is not life threatening. I am meeting with a doctor soon to go over the best way to manage it, and to (hopefully) figure everything out.

My Lyme disease has left me to this day with very little feeling in major parts of my left hand and fingertips, which as a musician has been interesting to navigate. I still deal with chronic pain, fatigue and muscle weakness every day from both of my illnesses. The muscles in both of my hands have atrophied. When I returned to work, I had to combat my frustration that came with only being able to play for about 25% of each of my sessions. But I’m doing ok. I’m still here. And I’m so proud to say that after 6 months of being in and out of treatment for my Lyme Disease, I reached a remission period, and at this point I have been there for just over 2 months! I’m hoping for more good news from my follow up in a few weeks. I’m also proud to say that I’ve been in the most positive place with myself recently than I have been since I got sick, which is why I feel as though I’m ready to talk about this. As much as my illnesses have taken from me, there have also been a lot of positives that have come out of this experience. Having PT early on preserved the range of motion in my hand, which is what allowed me to return to my work and my music in the first place. I’ve become much more patient with myself and others, and have learned to set realistic expectations for where I am now, rather than getting frustrated that I’m not where I used to be physically before I got sick. I’ve been working hard to rebuild my strength, and have been making smarter decisions for myself and my body. I’ve also been working super hard to rebuild my musical skills, and have learned to be proud of where I am in this moment. This past year has been difficult. It still is, but I’m getting there and dealing with everything in a more positive way. #LymeDisease #Ehlers -danlos #ChronicIllness #Remission #CheckInWithMe