Wednesday, April 8, 2015

The Will to Keep Going

Too much.

I’ve mentioned throughout this blog that my mother’s health has been declining over the last year, and the last few months she went downhill rapidly. She had to stay with us for a little while earlier this year, but I couldn’t be a caregiver to her because I rely on one myself. This is part of the reason why I was bedridden throughout the end of January and all of February.

I removed myself from the situation for awhile to try to get my strength back, which worked, but she took a sudden turn for the worse during that time. My step-father had to move her into a long-term care facility. She’s 60 years old. It doesn't make any sense.

I’ve tried to help and be supportive to my family, but I'm trying to push through my own challenges.

I’m still dealing with having to resign from my dream job and convincing the disability insurance company that my wheelchair and sedentary lifestyle are not ornamental.

I thought I was navigating all of this with equanimity and then last week I got a message from one of my doctors that sent me over the edge. All of it just became too much. 

I’ve been doing testing for my pulmonologist to identify my breathing issues, especially in relation to my other symptoms. I did a spirometry (lung test) a month ago that was very abnormal. It showed the difficulty I have trying to inhale, so my doctor suggested doing a longer version, which I completed last week. She sent me a message a few days ago with the inexplicable words “everything looks normal.” It may sound strange to be frustrated by “normal” test results, but when you’re trying desperately to get a diagnosis, it can be a punch in the gut, especially when it makes no sense.

The thing that I’m really frustrated about is that I listened to my doctor. For the first lung test I didn’t take the Mestinon, which I have become dependent on to be able to breathe somewhat normally, and the results were very abnormal. For the test last week, my doctor insisted I take it, even though I explained to her my concerns that it would skew the test. And then the results came back normal. I knew I shouldn’t have taken the medication.

I’m in a bit of a predicament. I tested positive for Myasthenia Gravis, I have the symptoms (mobility problems, weakness, fatigue, difficulty breathing), and I’m being successfully treated for it (Mestinon), yet I don’t have a diagnosis. Whenever I explain this to any health professional, they are perplexed as well. This process seems backwards. I'm concerned the treatment options my doctor mentioned such as a breathing machine for sleep are no longer going to be available. I can’t discuss it with her because my next appointment isn’t until July, which feels like a lifetime from now.

I’m angry. I'm frustrated. When I read those words, I went into a tailspin. I told my husband “I’m done. I don’t want to do this anymore. No more tests. I’m done.” I wanted to cancel all of my appointments and tell my doctors I’m not going to be dragged through this process anymore.

I just want a chance at some quality of life. To be able to leave my couch successfully for longer than 30 minutes to an hour at a time. To drive (at least a little) again. To not have to struggle so hard to breathe and move, and maybe someday be able to sing again. To get some of my independence back. To be able to be supportive to my friends and family.

Every test seems to lead to more questions than answers and more tests. They are like gremlins. Sprinkle a little water on them and they multiply into destructive monsters that ransack your cupboards and terrorize your life. Every test seems to move this process one step forward and two steps back. It’s already taken more than twice as long to get this diagnosis than it did to get the POTS diagnosis. 

In the last year, I’ve been told by doctors and insurance companies I can walk “normally,” I’m “not technically disabled,” and my breathing appears to be “normal.” Yet, none of these words match my reality. These words have affected my material experience in terms of diagnosis, access to treatment, and access to insurance, but they do not reflect my lived, bodily experience. They do not reflect my inner truth. Although the question “am I wrong?” bubbles up from my subconscious daily, I know that I am not wrong. I know what the truth is. These words don’t matter in that respect.

So right now, I’m feeling done and tapped out. I don’t want to do any of this anymore. But I’ve been here before. 

Yet, I really believe the universe supplies you with what you need. I don’t have any appointments related to diagnosis or any tests for the entire month of April, which is a bit of a miracle. This gives me some time to recover and try to re-engage in this process--to step away and try to cope with all of the curve balls life has thrown at me. I owe you one universe.

In the health communities I’m in, I see people ask almost daily “How do you keep going? How do you not give up?” There is no answer honestly. There is no secret. You accept that there are times that you don’t want to do any of it anymore and then there are times it is second nature. I just try to navigate the stormy waters of anger, frustration, and disappointment. I wake up and put one foot in front of the other and the march of time seems to continue.

I try to focus on small victories and remind myself of things I have to look forward to: a new book about ancient Britain, playing video games with husband, playing music on sunny days, seeing my friends, hearing my nephews’ voices, the discovery of a documentary I haven’t seen, the prospect of recording again someday. Piece by piece these small glimpses of hope can help, and it can be enough to get by. Eventually I'll get my spark, my spunk, and my snark back.

I’m going to gather all these strands and threads of fate and try to imbue them with meaning and purpose, and then someday I’ll step away and these threads will tell a story that makes perfect sense.

I leave you with beautiful words of one of my favorite authors:

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