The Week That Was, April 8th

I guess I didn’t manage to do any weekly updates in March either so here’s hoping I can do a few in April at least.

-I’m finally starting to feel a little better. I’m climbing out of the longest rough patch I’ve ever had but I’m starting to be able to do a little bit of exercise again and it’s been multiple days since I’ve had to spend part of the day in bed. Woo hoo for a little verticality! The view from my couch is always better than the view from my bed for sure.

I shirked all responsibility this week since I’ve been feeling better. I didn’t prepare for appointments, make appointments, work on my applications that needed to be finished, etc. I just enjoyed the feeling of functionality a bit and put it all off.

It was lovely.

- Yesterday, I shared a sponsored post that’s been in the works for some time. Someone from SaltStick contacted me a few months ago about doing a partnership and I debated it for awhile. I have no plans to monetize this blog. That’s not the direction I plan on going but since I’ve used their product every day for years now and I have found that many with Dysautonomia have never heard of it, I thought it might be a good idea. The best part about it is they offered everyone (in the US at least) a coupon code to try the product. Check out the post and find the code.

Even my husband uses their product since they were created mainly for athletes in mind. He takes some before he does a hike or when he goes to Tough Mudder events.

-I found out about a month ago that one of my poems is going to be published. I submitted some stuff last minute to my alma mater’s literary journal and had no expectation that anything would be accepted. I’ll share the poem when the journal is released, which should be in the next few weeks. They have all the authors participate in a reading but I had to decline to attend. I would love to have gone but going to an event like that isn’t in my realm of possibilities right now. Maybe someday.

- Monday is my mom’s birthday. This week marked 6 months since she passed too. When I spent much of the last month in bed, I had to put the grieving process on the back burner. I just couldn’t face it when I was drowning and desperately trying to swim back to the surface. I had planned on going to the convalescent home where she lived and did hospice care to play their piano on that day. I haven’t played there since before Christmas. I would like to play there once a month at least but I haven’t been well enough to do that. I’m not sure I’ll go that day. I might end up crying more than playing. I do want to go soon though.

I’ve been playing my keyboard almost every day again and I’d love to go make an offering of music in her honor. She loved Elton John so there’s one song I’ll definitely be playing, which is at the end of the post.

-I have a really unpleasant pulmonary test next week that I am NOT looking forward to. It's a pulmonary function test. Luckily, I’ve done this test before so I at least know what to expect. It’s at the hospital a few towns over. I’ll have to breathe hard into multiple tubes for about an hour, which is brutal. I did this test a year ago and this should determine if my respiratory muscle weakness has indeed worsened, which is definitely feels like it has.

Compared to a year ago when I did the test, I’m on a higher dose of Mestinon now and I use multiple inhalers every day. Even with these, I struggle to breathe every day. I have to limit how much I talk and I had give up singing completely because it always ends in disaster. My soul feels incomplete without singing but I’m hoping someday to do it again. When I can, I’ll be able to perform again. 

The respiratory weakness is my most difficult symptom to manage by far so I’m hoping when I finally start immunotherapy that there will be some improvement. My quality of life would improve immensely if this symptom wasn’t so severe. Unfortunately, it's the most dangerous Myasthenia symptom because you can slip into Myasthenic Crisis at any time, which is why I have to be so careful every day.

I just want to get this test over with.

-Speaking of Myasthenia, an article popped up in my alerts that discusses the potential discovery of new antibodies associated with Myasthenia. It is extremely challenging to diagnose. Some test negative for the current antibodies associated with the condition and this leads to delays in diagnosis and treatment. This has been the case for me. My neuro at Stanford told me I likely have one of these undiscovered antibodies. The longer treatment is delayed, the more permanent damage Myasthenia does to the body. It's been years since my symptoms started and I still haven't started treatment. It's good to know that research is ongoing for the disease and there's hope that people will have access to a diagnosis and treatment sooner! 

-I have some great news to share. If you’re on the Facebook page, I already mentioned it there. I’ve discussed many times on the blog that I’ve been in a long, grueling battle with my private disability insurance for the remainder of my short-term disability. After two years and multiple appeals, I found out a week ago that I won my case! We didn’t think I had a chance in hell since multiple law offices declined to take my case and winning any disability appeal is nearly impossible without legal support.

This was my last appeal so I was waiting for one last denial letter. Then I’d set it on fire, shake my fist, and shout some expletives and move on with my life. That was the game plan. Then they called me and told me I won my case. I’m still in disbelief. It's not a monthly payment or a permanent disability unfortunately. It's just a lump sum of a few remaining months of my short-term disability, which the insurance company denied me. I'm in the process of applying for state disability right now.

A few people have asked me to share what strategies I used to win my case. Since my disability was through a private insurance company, the process was different. That’s why I couldn’t find a lawyer. Very few take private disability insurance cases. An office in Texas almost took my case but they ultimately declined. I will write a post soon sharing some of the knowledge I gained from this process soon.

It’s a huge victory since I spent an unbelievable amount of time and energy on all of my appeals over the last two years. What a relief.

I bought myself a fancy new record player as a reward.

I hope all of you are well out there!

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: