Taking back my life.

 

[Image description: If you change nothing, nothing will change]

To start I had physical therapy this morning with Dr. Jen. After the last session before the holidays which left me crippled and barely able to walk and flared up in pain beyond belief for almost two weeks, I was actually starting to feel a little bit of an improvement. Well…that’s the point of PT right? Just the last couple of days I have noticed less straining to pee. 

So today when I saw Dr. Jen, I told her what happened. And she said maybe we should take it easy. But I told her I’d rather push a bit harder now because I still have off of school for two weeks and I want to see more improvement by then. So we pushed and she said I handled a lot more pain today, much better than last time. Although she was doing some manual trigger points internally and at one point she pressed a muscle and it hurt so badly, I almost threw up. Wow, it was just so intensely painful.

On a less painful note, I recently got a book called The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life. Written by Patricia A. Fennell, MSW, LCSW-R. 

Fennell discusses the four phases of a chronic illness (pg 37-38). It reminds me of the phases of grief in a way (Denial, Anger, Bargaining, Depression, and Acceptance) Although outside of these phases there is a huge grief cycle that people with chronic illnesses go through. And I am no different. Here are the phases that Fennell describes:


Phase one: Crisis 

This phase is characterized by crisis and chaos. And seeking relief of pain and hurt. 

Task: you and your support system are to deal with the immediate hurts or traumas of your new illness


Phase two: Stabilization

This is a plateau of symptoms and they become more familiar. You start to think that maybe you’re getting a little better but still continue to experience chaos. You keep trying to behave as you did before you got sick and this attempt frequently leads to relapses. These are very upsetting and feel like a personal failure.  

Task: Begin to stabilize and restructure your life patterns and perceptions

Phase three: Resolution

By this point, you have learned how your illness behaves and how the world responds to it. You’ve also finally learned that you can’t be the person that you used to be before you got ill. This can be a devastating perception. 

Task: Develop a new, authentic self and to begin to locate a personally meaningful philosophy to live by. 

Phase four: Integration

You are now able to integrate part of your old self from before the illness with the person you are now. 

Task: Continue to find ways to express your new “personal best” to reintegrate or form new supportive networks of family and friends. In total integration, you arrive at a new, whole, complete life, of which illness is only one part, even if it is an important part. 


I think I am somewhere between phases two and three. I’m just starting to realize that I can’t behave the same way I did before IC. I am in the process of learning that I can’t be the person that I used to be before IC.  I don’t think that the phases are static, they seem fluid and it would be easy to take one step forward and then two steps back.

Working with DeafBlind people was my entire reason for being. It was my passion, my motivation and my goal for years. I worked for two different organizations part-time as a freelance Support Service Provider with DeafBlind clients. And I volunteered on the Board of a DeafBlind organization for 3 years called Metro Washington Association of the DeafBlind (MWADB). These jobs were everything to me. I went to Gallaudet University (the only Deaf liberal arts university in the world) and got my BA in Deaf Studies with a focus on DeafBlind. I always said the Deaf Community is my home but the DeafBlind Community is my passion. And it gave me drive. But that changed. My health changed that. I am now in grad school to be a social worker, and I am hoping to specialize in working with DeafBlind people. But the issue is that working with DeafBlind people is all-encompassing. Even though there are such a variety of communication methods, working with DeafBlind people is a give it all kind of job. It’s mentally, emotionally and physically exhausting and that was one reason I always found it so rewarding. However, my body and my health disagree. My body can no longer handle to constant tactile signing or guiding people. My body can no longer handle how mentally exhausting it is to describe the environment to the best of my ability. 

When I could no longer give 110%, I knew I could no longer do these jobs. I had to resign…this just happened in the last week. And it has shattered my heart into thousands of pieces. I have met such amazing people in the DeafBlind community. And of course, I will still talk to them. But I was planning the long game in the DeafBlind community. That was my entire future. And now I am unsure if that is a reasonable goal. I have to take care of myself first. #selfcare

So yes…I am trying to take care of myself. I promise. I am solely focusing on grad school when this next semester starts. 

 

Related image
[image description: A picture of a cartoon bunny saying “Your health and happiness come first. Never feel guilty for taking care of yourself.”]

 

 

 


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All the pain

[Image description: A 0-10 pain scale 0 with a green smiley face. 0-3 is green 1-3 is mild. 4 is yellow moderate. 4-5 yellow/orange. 6 is orange severe. 8 is sad face very severe. 7-9 is dark orange to red. 10 is the worst pain possible with a crying red face]

Here’s the real reason why I am here. Pain. I have been in pain since I was diagnosed with IC. But since September/October 2016 I have been having off the chart pain levels for both my IC and migraines.

For about a month, I had a migraine. I woke up with a migraine every day, which never had happened before. I’ve had migraines since I was 18 but never have I had a morning migraine. And now I was having them daily. I didn’t realize how long it had been going on, I was only minimizing the pain by taking Excedrin Migraine. My migraines we between a 7-9 on the pain scale for that long. I wasn’t on migraine meds because for a long time they were under control. But no longer. My sensitivity to lights, smells, and noises increased drastically. Smells that never bothered me before were coming at me like a blast of air in your face. And my visual auras, which are like headlights flashing in my eyes, were frequent as well.

I went to my doctor of 10+ years. She has seen me on every migraine med ever. We immediately got me on a preventative, Topamax (aka dopamax). And an abortive, Sumatriptan. As soon as I started taking the Topamax there was a huge decrease in my migraines. But my visual auras have increased and sometimes leave me feeling off balance. They are still continuing now. But we might be changing my migraine meds, at my next follow-up on January 4th, because of that. We shall see what happens.

I also bought migraine glasses, which are not RX, nor are they cheap. But they are made with a special tint, called FL-41, which helps to cut out certain types of light. I really like them when I am in the classroom because of the terrible fluorescent lighting. I would say that they have helped me a lot. They are worth the price of $149, if you have migraines with light sensitivity, you will understand it. I bought mine from https://www.axonoptics.com/  but there are different stores that sell them.

As for my IC, it turned into debilitating pain. The pelvic floor muscles, which everyone has, they sit at the bottom of your pelvis and cradle your bladder and uterus and whatnot. Mine decided to tense up as tight as possible. To the point where I can’t pee when I want or need to go. And because I have IC, I tend to have to go often…especially when I’m stressed. So not being able to pee really does not help the situation. I can sit on the toilet anywhere between 1-10 minutes before my muscles relax enough to allow me to pee.  Yea…it does hurt. This often ranges from a 7-10 on the pain scale.

My urologist referred me to a physical therapist for this. I have gone to physical therapy for this before, and at the time I thought that hurt really badly. Oh, how wrong I was. No this time around for physical therapy…is pure hell. Physical therapy for pelvic floor muscles involves manual internal manipulation of the muscles. This is why it can’t be just any old Joe PT Schmo off the street, it has to be a Physical Therapist who has had specialized training. But as one might imagine, internal physical therapy hurts something fierce. I had PT on my ankle and that hurt quite a bit and I didn’t like it at all. But PT for internal PFM is like no pain that can be described. So I’ll leave it at that. Afterward, I could barely walk for a week. Please understand she did minimal internal work, she didn’t push me too hard and stopped when I couldn’t take it. It was just my body’s reaction to be like OMG WTF ARE YOU DOING TO ME?!?!? I couldn’t walk or move. This was a 10-11 on the pain scale. It was bad. I expect it to happen again. Unfortunately. But I do see a difference, I have more release in my PFM. So the PT is working how it is supposed to.

Another symptom that was appearing during those months was all the muscles from my thighs to my abs were sore. This tends to be a consistent 5-7 on the pain scale. They felt like I had worked out a lot, which I don’t…because… IC. When I went to my now physical therapist, Dr. Jen. She told me that my whole body was tensing up because it was trying to protect my bladder and it was unable to release itself so it stayed tensed up all the time.  So needless to say Dr. Jen and I have a lot to work on. My main thing is: relax! lol Like it’s that easy.