It has been eight years and four months since I first officially reported having muscle weakness. July and August were rough. So rough that I haven’t blogged since July 16th. I had my muscle neurology check in on August 27th. Those happen four or two times a year with my muscular neurologist. My specialist. The captain of the “A Team.” (What I call my very long list of medical professionals.) She is part of the UC Davis PM&R Clinic. “Physical Medicine and Rehabilitation.” She sees patients with muscular disorders and diseases.
But I digress.
I saw her on August 27th. I hadn’t been since
December. Since then two things had worsened. My right ankle/Achilles and my
breathing. I let her know in December and the appointment before that one that
my breathing felt like it was becoming more of an issue. I could feel myself
struggling most at night and in altitude change. Or pressure change (the
weather or in the pool.) This time I really stressed that it was feeling worse
and she had me evaluated by the departmental pulmonologist. It had been two
years since I’d had a full evaluation.
She found that my lung capacity and oxygen levels were still
good. But my muscle strength (diaphragm muscles especially) had weakened
substantially. They measured at about 85% worse than two years ago. It’s bad enough
that she’s ordering a new sleep study for me and another “Cough Assist”
machine. I hate that fucking thing.
Right after that appointment the air pressure shifted
dramatically and I had gigantic issues breathing at night. I contemplated going
to the ER, it was so bad. My mom bought me some wedge pillows that helped a
lot. I slept very elevated and used my nebulizer machine twice a day. That kept
me out of the hospital.
I called and messaged the Pulmonologist to let her know I was
struggling so bad and that it seemed connected to the air pressure shift. Her
response was “Huh, that’s strange. I’ve never seen that before. I’ll let the
doctor know. You already have your referral for the sleep clinic.” In short. “HANG
IN THERE KITTY!” That felt very dismissive and shitty. And despite my multiple
calls since, I’m still waiting on the sleep clinic to even schedule me for my
sleep study.
My ankle will require a custom made orthotic. An ankle brace
since my ankle is unstable both ways and over-pronating. That means my Achilles
keeps stretching out of place and re-injuring. Which is why it has hurt for
almost a year now. Fuuuuuuuck… So a new custom ankle brace for that and new
foot and leg brace for the drop foot (which I still have on the same leg.)
Fortunately my left side is fine. Some good news.
PANCAKES with my mom!
Worth living for
Absolutely
UC Davis is becoming shittier and shittier. The wait time
for anything is 3-6 months. Next week I’m seeing the Immunologist. Something I’ve
been trying to do for a year. I had to see my PCP twice, my muscular neurologist
once and a Rheumatologist before they’d send me to him. What a huge mess. After
that is the ENT. I’m seeing them for my continued right ear blockage that seems
to be neurologically based. The nerve gets irritated and then my Eustachian
tube blocks. Wheeeeeee…
Also coming up is my pain injection in my Achillies,
followed closely by Botox round two. It took me eight months to get my Botox
back. Jeeeeeesus H Christ…
On the good news side. My new migraine neurologist is
someone I like and have seen before long ago. I’m seeing him in November. And
my new anti-seizure medication (brivaracetam 25 mg tablet, commonly known as
Briviact) seems to be working with few side effects. Dizziness and urinary
retention only. I haven’t wanted to kill myself (yet) so I call that a win. Horraaayyyyyyy…
But here’s some good things.
I always have a great time with my mom, John and my sisters. Max and Margo keep me smiling, laughing and company, even when I’m in bed. Ice cream Sundays and delicious sandwiches are still to be had. I have beautiful clothes to wear. I’ve seen some astonishing nature lately. Deer, a raven, a vulture eating road kill and a massive thresher shark breaching. The swimming pool feels amazing. I got to go to the beach the other week. Just hearing the waves and smelling the air was cathartic.
My drawing of the beach
My son loves me and gives me hugs. I have a good friend
coming down to visit from Texas in September. I still beat my husband at games.
Summer is almost over and I can smell autumn in the air. My favorite time of
year. My 32nd wedding anniversary is coming up. That seems hard to
believe that we’ve been married for so long.
Although it’s easy to feel angry and overwhelmed by my
health and what I “can’t do.” There’s still plenty that I can do and that I GET
TO DO. I can’t forget that.
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