So much has happened since the last time I posted but I am still not doing well enough to type an update. I'm writing this on my phone. I've spent almost all of the last two months in bed on my BiPAP, recovering and trying to improve. I'm not there yet but I'm starting to get there. In the meantime, I'm going to try to share some little writings and crappy poems from my journal that I still write in almost every day. That seems manageable. I wrote this one a few days ago:
I crackle
I break
A body with a language all its own
No one can decipher
But a petal here
A petal there, look
It bends, snaps
A momentary distraction
Pause the piecing together
Holding limbs that fray and unravel
Clenching it all together for just a breath
To let it collapse
Look as it blooms
There's life pulsing there
A tiny blade of grass alone
A diaphanous web clinging in memory
Sunlight piercing trees
For just a moment the internal battle ceases
And I remember how to feel alive
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.
