8 years and 4 months

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 16^th. I had my muscle neurology check in on August 27^th. 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 27^th. 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.

Breaking out the ol' nebulizer

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.

Hang in there girl!

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.

Beautiful flowers from a friend

Worth living for

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.

Oh good Goddess
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…

I’m displeased. Sad about how my body is taking a turn. I’m using my chair more and more despite going to the gym and trying to walk as much as I can. Everything seems to set my body off. I had a crown re-done at the dentist a week ago and have had nothing but pain and bruising since. The kind of pain that keeps me up at night. Most of the night.

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 32^nd wedding anniversary is coming up. That seems hard to believe that we’ve been married for so long.

Saw some "Glossy Ibis" with my mama

I love seeing new things

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.

 

 

 

 

Keep Calm and Fight!

So the world imploded last week.

Again...

First Trump won the Presidency in 2017. We had him keeping the seat warm till 2021. Now we're in for him again. Both times he ran against women. The first time he lost the popular vote. Or as I like to think of it the "real" vote. The second time he won "for real" with the majority of America preferring a narcissistic dictator to a woman of color. Of course they did. No surprise there. Women of color are valued the least in this country.

Vice President Kamala Harris.

I really wish she was our new President.

I was crushed, then enraged. Disgusted with every single person who voted for him. I grieved for what could have been under a more liberal, collaborative leader. 

Now I'm just sick and tired of women being treated like trash. Of course there are other parts of the world that are much worse. But on average I do not feel like women are valued at all.

Like a phoenix I'm rising from despair into action. Women's causes are now my number one interest. I'm taking my time to consider where my help would be most impactful, but I am planning on actively working for the greater good of women. 

August 26,1920 Women are given the right to vote.
Not very long ago

Will that be a support group for disabled women? For mother's of special needs offspring? Volunteering at Planned Parenthood? Working for reproductive rights, equal pay and other women's causes? I'm not quite sure yet. My time is limited, so I want to make sure I'm making the greatest impact possible with what skills I have.

Maybe even just a women's only support group where we de-stress and share? A women's circle.

Hmmmm, that has potential.

Why it's easier to just stay home

My husband and I went out to see friends last night. They're good friends, but friends we have a hobby in common with and see about once a month if we can. I had tried to save up my spoons and had a good nap. I dressed up nice and we took Pablo out with Dory so I felt all spooned and tooled up. 

Then a friend said something really stupid that just knocked the wind right out of me. My husband/ally was behind me talking so he didn't hear and couldn't step in. Drat! I was left hanging in the wind. The conversation went like this.

Friend: "Are you working now?"

Me: "No. I'm on disability".

Friend: "Oh, so you're home?"

Me: "Yup!"

Friend: "Can't you even work from home?"

Me: ... (wind knocked out)

Me: "Noooo... I'm disabled. I'm on disability. I'm home not working because I can't work."

... "silence"

Me: "So how are YOU doing?"

That's my technique. Whenever someone puts their foot in their mouth I just turn the conversation away from me completely and onto them.

During that same evening I also had a very drunk friend hang ALL over my chair and myself, smudge my glasses, gave many many hugs in which I was careful to turn my chair off so as to not run over anyone... in short it was nice to see my friends but it was a LOT of spoons.

I seriously understand why people just stay home. 

My sweet friends want to bring a lunch over soon and come over to my house. I promise myself not to clean or feel bad about my house not being "up to snuff" comparing it to how it used to be. I also will not let my husband run around cleaning and buying food to entertain them. We'll see if that's better. 

I know people don't mean to say hurtful things. And it does come from strangers too. All the time really. But that's what I mean when I say often times it's just easier to stay home. 

Frustrated

I think that's the number one word I would use to sum up my chronic illness. "Feeling frustrated" a good majority of the time. 

A big cause of that feeling comes from the moving target of my kind of illness. I literally never know how I'm going to feel, what I can or can't do, from one second to the next. I can kindove have a plan. I can guess. I can take what I think will be preventative measures, but there's zero knowing where my body will end up.

Case in point last night. I was coming off a hard weekend where my body just needed a lot of TLC and rest. I missed out on a lot of fun things we had planned (= frustrating). Then last night something was wonky with my breathing all... night... long. Was it asthma? Allergies? My lung muscles not working? Too much dust in my room? Heck if I know. I just had a very hard time breathing and slept like crud.

I'm a problem solver by nature, so this morning I look up tips for night breathing and find my pillows are long overdue for a wash. Not the case... the pillow. And my favorite soft one that I keep by my face (along with my stuffed shark) haven't been washed in at least a year. Ok, good place to start.

Me and my buddy Bruce

Then how about using my inhaler more? I thought I already was, but can't hurt. I already have an air filter in my room, but is it positioned right? And how about that throw rug, does it need a wash? And here we have my entire day.

Now my whole Monday has gone from everything I had planned on doing to trying to make my room as "lung friendly" as possible. This is life with a chronic illness. And it is very frustrating!!!

All in a year

I started this blog just a tiny bit over a year ago. Reading my first post I shook my head in disbelief at all that's happened since I wrote that. I had no answers at the time. I just knew that something was very wrong with my body and I was struggling to get the help that I needed. Oh how right I was! And luckily for me that help did come. 

A year ago I said "my body just decided not to be doing so well"  that could have been the biggest understatement of my life. In fact I'm sure it was. What was really going on was: 1) I had a benign meningioma brain tumor growing in my left temporal lobe. 2) I have Rheumatoid Arthritis. 3) I have a genetic disease called Metabolic Myopathy. Soon after that post my muscles would begin failing me and it remained a mystery till November just what was going on. 

Reading over my frustrations, anger, hope, struggles and yes... fears I feel nothing but empathy for myself. Frankly I still can't believe that I went through brain surgery just seven months ago and have metal plates and screws in my skull. It's hard for me to wrap my mind around (pun intended.) Or that I'm technically also a mutant with my mutated genes causing the metabolic myopathy. I mean really? Was the TB just not a big enough of a deal?

I still feel like if people knew the whole story of what I've been through in the last four years they would think I was making it up. It's just too fantastic that someone can go through everything I've been through health wise. I fear they would think I'm faking it or lying. But it's all true. And I'm still here.

That's the best part. I'm honestly happier than I was four years ago. I'm also a better person. I'm less judgemental, more fearless, more forgiving, more patient and more empathetic than I was four years ago. I think great suffering is like that. Either you give in and struggle in the darkness full of fear for your life or you embrace the wonder that is our time here. See the miracles all around and love till your heart just can't love anymore. I chose the second one. 

I have my family, I have my tools, I have my spirit and my body is still here doing the best that it can each day. That's pretty magical really. I'm one lucky woman!

3 Weeks Post-Brain Tumor

It's been 3 weeks today since I had brain surgery to remove my benign Mengionoma. Something strange started happening last night. I started to feel angry. Here's some reasons that were running through my head:

• 9 month aggressive treatment for Latent Tuberculosis 3 years ago that was like a bomb setting off a series of autoimmune issues
• Chronic joint pain and swelling 
• Crippling fatigue
• I had a fricken brain tumor
• Whent through brain surgery
• Now I have 3 plates and 10 screws in my head
• Mystery muscle weakness that no one still seems to know why or what it is
• I now own 2 wheelchairs and a walker at age 45
• I need to use a handicapped parking plate
• What I can and can't do has changed dramatically over the last 8 months
• I have constant pain
• There are tons of things I want to do but just can't
• I'm worried I'm going to lose my job because of all the time off and constant doctors appointments
• I want to be able to travel like I used to
• I'm trying to not let my health issues take over my life
• I'm exhausted from being constantly optimistic
• I'm tired of spending money on all of these problems
• I feel like my body has completely failed me

I'm usually a very positive, optimistic person. I'm a problem solver by nature. When I get down, I don't stay down for long. But today is a "down day." I'm lucky that I'm meeting a friend for coffee later. I'll lean a bit on her let her cheer me.

I think this was all triggered surprisingly by my new wheelchair. I finally got the approval, it has been ordered and will be delivered to me November 1st. Yes, I want and need this chair, but I think it also triggered this cascade of anger in me that took me by surprise.

"Big Blue" - My new electric chair

Still not having a real answer about why my muscles suddenly started to give out back in March is horrible. The best I can figure out is it's some kind of "Inflammatory Myopathy." But that's just my personal guess (but it's more than what my neurologist has come up with.) All I know is I can do about 25% of what I used to physically be able to do and no one seems to know why.

My husband and I were hoping the cause was the brain tumor. When we first found out about it my neurologist even told us that was the cause. But quickly other medical professionals disagreed and said it was unlikely to improve anything muscular. However, before surgery my right hand and right side were much weaker than my left. Now they feel about the same. Who knows how or why? So my husband and I are still holding out hope that things will improve on their own.

Hope. That's so important when you're struggling with a chronic illness. I find when I lose hope it's necessary to connect with others who can hold onto it for me. My husband is fantastic about that and he never seems to lose hope. 

I found this lovely quote I wrote down a year ago from my Nana. She told me this over the phone and it's a wonderful reminder that as long as you are loved, there is always hope and comfort. It's a good reminder that I needed today. It's also ok to remember that I'm allowed to be angry. I've been through a lot! And I know the anger won't last long.

Love/Hate Plaquenil

It has only been 2 days since I went down from 400mg of Plaquenil to 200. I was taking it twice a day, now I just take one a night. I stopped taking it because of the increasing muscle weakness in my arms and legs. It was making every day things like showering, dressing, walking a real challenge. I wanted to be sure that it was the Plaquenil that was causing this progression before my neurology appointment next month. 

But...

After just 2 days of a reduced dose I've noticed a huge difference:
- The eustachian tube dysfunction (ETD) I've struggled with in my right ear for years now was back this morning. Feeling full, a little blocked and making me dizzy.

- I couldn't sleep because 1) I felt wired/awake 2) the serious pain in my back (especially my lower back.)

- The neuropathy in my hands increased, especially last night.

- My joints ache continually again (not just from "gelling" when I get up.)

- Did I mention the dizziness? That sucks.

- I'm much more tired today. Could be from not sleeping well though.

My rheumatologist still hasn't gotten back to me, so this morning I messaged my doctor. I was very frank and asked if I should go back to 400mg, try another drug or see another rheumatologist. I may try and call her today as well seeing as I feel horrid.

This just adds to that looming feeling of isolation and like I'm in this with very minimal medical oversight. I keep reading how "early treatment and intervention is KEY" and then the medical "experts" really aren't working with me. It's very frustrating. Every minute I'm second guessing myself and feeling like I should just go back up to 400. But the muscle fatigue really was a big problem and I DO want to know if it was being caused by the Plaquenil. 

I went to the store this morning, which was great. Then I stared at the bags in my car and just wanted to cry at the thought of brining them inside PLUS putting all the food away. I sucked it up and did it, but it was hard. 

I HATE that things like grocery shopping are now hard. I feel angry, sad, frustrated, pissed at my doctors and hostile to my traitorous body. I'll feel more hopeful tomorrow. But today is for sulking under a blanket.