I wrote in my last post that I was coming out of a
rough patch. I’m still working my way out of it. I’m recovering from a sinus
infection and things continue to get worse and worse with my family situation.
But I’m working on getting my groove back. I’m working on getting back to my
goal of posting at least once a week.
I’m working on showing up to appointments again too.
I haven’t been to physical therapy in almost two months and the irony is, I
have to rebuild my strength so I can go there and rebuild my strength. This
week, I’ve been able to spend less time in bed and more time in my yard. The
rest of the country is under a deep freeze and here in California, we’re
worried that summer is coming way too soon. I want summer, and the brutal heat that comes with it,
to take its sweet time.
I did manage to show up to an appointment a few weeks
ago for pulmonary function testing. I mentioned before that I was going to do
pulmonary function testing because I have this annoying problem of not being able to breathe. I’ve had difficulty breathing since the POTS started in 2011
but along with many of my other symptoms, it has worsened considerably over the last 10
months. I often wake up in the middle of the night or in the morning not breathing. I started
taking Mestinon and that helps, but it hasn’t solved the problem. Thank god for
this canned oxygen I bought on Amazon. It really does this trick, and
especially kills the brutal chest pains that come with the difficulty
breathing.
The test is called a spirometry test, and it proved,
finally, that I am having trouble breathing. My neurologist suggested it to see
if I maybe, possibly, probably have Myasthenia Gravis. I usually get a picture
taken during tests so I can show what it looks like, but this test was over
relatively quickly so you just have to imagine me sitting in my wheelchair,
breathing hard into a tube, and trying to look fabulous.
I had to inhale and exhale quickly into a tube and
try not to pass out. I had to do that a few times. The last one I did, I
guess my brain started turning off. Once I stopped huffing my lungs out into
the tube, I looked up to see my husband and the nurse wide-eyed and ready to
catch me. They asked if I was ok, and I was fine. I wanted to say, “is that all
you got? What’s next?” It wasn’t pleasant but it was over pretty quickly, and
no one had to catch me.
I got a copy of the results and faxed them to my
neurologist. I didn’t expect him to make any comment or finally provide a
diagnosis, and he didn’t. I get to add to my perennial growing list of
specialists and see a pulmonologist now. I’ve always assumed the breathing
problem was related to POTS and the maybe-probably-Myasthenia, but my primary doctor mentioned that perhaps it could be something else. That’s not something I’m ready to
wrap my brain around.
The best part was when I looked at the results again
a few weeks later and saw something I didn’t see before: A line that said “Patient’s lung age:
76.” I showed it to my husband and we had a good laugh. I guess I finally have
proof that I really am young on the outside and old on the inside, like a
really good fine wine or a Twinkie that’s been in a drawer for years.
It's nice to show up. The stress of the last few months has seriously
affected my health and contributed to being bed-ridden for weeks. I’m
relatively resilient but my body is a delicate flower. It doesn’t take much to
make everything start shutting down, especially the breathing problems. I’m
working on removing myself from stressful situations, staying positive, and
trying to stay well. It feels selfish in some ways, but more than anything, I
have to survive. I have to be able to get out of bed every day.
Being ill is a full time job that takes immense
daily effort. You have to eat the right things, take the right pills at the right times,
exercise enough but don’t overdo it, keep up with appointments and testing and
communicating with doctors, managing symptoms, resting, and try to keep enough energy for loved ones and
for yourself. Those weeks I was bedridden I got incredibly behind. I’ve written before how beneficial mindfulness is and I’m really cultivating that practice
and I’ve been meditating almost every day, focusing on living in the present,
breathing, and appreciating the gifts of life.
I can’t remember the last time I went out in public,
but last weekend I convinced my husband to take me to the consignment store
that is just down the street from where we live, one of my favorite local
stores. I grabbed my walker and as soon as I walked in I saw it: a gorgeous, vintage baby grand piano. Our eyes met from across the room, and it
was love. I parked the walker and never even looked at the rest of the store. I
played that piano as long as I could until my energy ran out, and my wonderful
husband waited patiently until I was done. I’ve been thinking about that piano
every day since. I need to come up with $5k to buy it. That moment filled my
heart with so much happiness that it washed away the trauma and stress of the
last few weeks for awhile. It was glorious. Next time I go, I’m going to try to
get a video of me playing it and I’ll share it here or on the Facebook page.
I had big plans for 2015, hoping I could navigate
the chaos of life a little more, but it’s been a very rough ride so far. I
still always have faith in a better tomorrow and believe that you have to wake
up every day, stand strong (wearing your compression stockings), and face
whatever may come. Life may knock you down and take your breath away, but
remember all the times you were able to get up before that. You’ll get up
again. You’ll get up every time.
 |
| Standing strong, with a little help |
