My New Hobby

 For the last four months my husband and I have been enjoying a new hobby. Pottery. At first I thought we could both learn how to turn clay on a pottery wheel. But after the second time trying I learned it just takes way too many muscles. So my husband has been on the wheel improving each and every time. Meanwhile, I have been working at the table doing "slab build." That pretty much means just working with my hands without any clay moving. 

It has been tremendous fun! Shockingly so. Even more fun is the fact that I'm not very good at it. I'm learning each and every time. I'm a very creative person and I'm used to being pretty good at every art that I try. But clay? That's a new one for me. My muscle weakness also makes it harder for me, but not so hard that I can't do it (unlike the wheel). 

It's incredibly rewarding to actually make things that are usable in a different way than just hanging on a wall. We're making all our Christmas gifts this year, 

A finished product takes two pottery sessions. I make it at the first one, then they fire it while we're away. At the second session I glaze it. They have about eight different colors to pick from. 

Next up? A new dish set and plant pots. 

Powering Down

 So this is a thing...

It's called Livedo Reticularis. My doctors think I developed it from my Amantadine (aka: God's Cure Pill). It came on in May after my horrid sinus infection. I think they're wrong and it's from that virus. But they wanted me to stop taking Amantadine till I can be evaluated by a Dermatologist. Insert two month wait here.

Unfortunately without my Amantadine, this happened...

No, I didn't turn into a turtle. Not even a Ninja one.

Everything became slooooooow. I'm more tired in the morning (though I am sleeping deeper). The worse of it is my muscles became about 50% weaker. It has had a huge impact on my quality of life.

It has been about 11 days now with no improvement in my legs. They get much worse if I stand or walk. Last night I messaged my doctor to see if there's anything we can do while we wait to see what the dermatologist has to say. Blood labs? Antibiotics? I'm feeling desperate.

Because I'm moving less I also hurt more. It's a mess how that works. It's also been too hot to swim this week, which STINKS! Swimming helps me feel much better.

In the meantime I'm eating more to self-sooth, which isn't really helping my body either. ACK!

This little guy always helps!

I just have to ration my spoons even more than I was before. I have about 3 spoons per day or so when I used to have 6-10. And bathing always takes at least 1. Bummer.

I'm hoping for a situation update soon!

Let's Play It By Ear

 "Let's play it by ear" is the warrior cry of the chronically ill. It is an enormous challenge to plan life in advance as I never know how I'm going to be feeling from one moment to the next. With this comes a lot of guilt.

I feel guilty for making my husband miss out on having people over as much as maybe he'd like. Guilty about not going to friends homes as often as I'd like. Guilty for turning down fun invitations to places because I'm too exhausted to go, or the time of day is wrong (it's during "rest time") or the location isn't accessible. 

I feel guilty not being able to spend a full day away from home and making everyone have to come back home early so I can rest. I feel guilty spending a whole day sleeping after doing something exhausting. Guilty for not helping my mom and son out as much as I'd like to. Guilt also comes when I can't do something myself and I need help. 

Behind all of this "guilt" is a great, big, SHOULD.

I SHOULD be able to make it all day long without a rest.
I SHOULD be able to go to someone's house to visit for hours.
I SHOULD be able to travel.
I SHOULD be able to make plans and stick to them.
I SHOULD be able to get up and get on with my day in a productive way.
I SHOULD be able to help others.

But none of these SHOULD's should be here at all. Because of "can't." I am a disabled person unable to do these things. That is the reality of the situation. I can want to. Even feel like I "should." But I can't. So I don't. 

So instead we "play it by ear." Adjust when we need to. Do what I can and skip what I can't. Adjust our plans (or cancel them) and work around my needs. That's the fact of life right now. No need to guilt myself about it or "should all over myself." None of these feelings are helpful or healthy.

It is helpful to remind myself of that when the guilt starts to creep up.

Unlocking the World

On August 17th, 2018 I had my first ever assessment for a wheelchair. That chair would turn out to be my Quantum Edge in Ocean Blue (of course). I love her very much.

How can you love a wheelchair?

Much the same way people love their cars.

For me she's so much more than a chair that moves. She's everything about freedom that's so important. She literally unlocks the world for me. Without her my life would be smaller than small. 

She also means independence.

I'd be relying on others to push me everywhere if I didn't have her. Not only is that tedious for them, but it feels awful for me (literally, I get motion sick this way.) As my mother once put it when she had to push me before we purchased our wheelchair van. "Awwww, it feels the same as when you were little and I would push you in your stroller." For me too mom! It feels the same for me too. Like I'm an infant. Ick!

My biggest fear is that she will break and I'll have to wait months and months (if not a full year) to get a new one. Repairs and delivery of medical devices is shocking. A few companies have a monopoly so they can take their sweet time, lose your order or screw it up as much as they like. You're at their mercy. It's such a racket.

I have many fantasy businesses, but one of them is running my own wheelchair supply and repair business. 

Anyway... I digress. 

If something happens to my chair (and it already has in the past) I'm very limited. I do have my travel chair as a backup, but she's not nearly as comfortable or maneuverable. She's good for an emergency, or rugged travel. Not really for every day use.

I'm also curious if I could get a new wheelchair that raises and lowers up and down. Not just tilts front and back. And, as much as I love this chair, I didn't get the full assessment of an occupational therapist (OT) when I was fitted for her. Just a sales man for the company who ordered her for me.

I contacted my insurance company to see when I could qualify for a new chair and was told "Anytime you need one." WOW! That's great news. So then I reached out to my muscular neurologist and asked how it would work. She said she would need to see me, but that we could do a video visit. Then she would send me to my fabulous muscular disease OT for an assessment. Bingo!

This all means I'm hoping to get an order in for a new chair soon. That will give me some new options and a solid backup should anything happen. And IF I ever travel again on a plane, I can bring my big chair and not be in a panic if something should happen to it during the flight.

My world just keeps getting bigger.

My Time

Most people think that being disabled means I sit around, sleep and watch TV all day. They're confused about what I do. When I'm not scheduling, attending or following up on medical appointments and procedures (which really is a full time job in itself), here's where you'll find me. 

At my mom's pool. We work out together HARD three days a week for an hour. We swim and then have extensive routines that we do with our water weights. No way could I have done this last summer. It feels amazing to have so much energy to be able to push myself and build muscle strength in this way.

On days where I don't swim I try to walk as much as I can. I'm up to walking a quarter mile on my own with just my cane now. That's an enormous accomplishment and something I haven't been able to do since before I became ill.

When I'm not pushing myself to walk you'll see me out in my community in my wheelchair. I go to the Farmer's Market, alone to the store and for haircuts when I can, to museums, gardens and plays. My mother took this picture of me when we attended an outdoor play recently. We had a great time. 

I love to spend time in nature and take our dog out for "adventures." Here I am in my favorite oak grove with my favorite tree. The path is compact dirt, so my chair can maneuver quite well. We've been enjoying the weather before the super hot days come.

I also spend a lot of time and energy in my garden. We are currently growing tomatoes, peppers, basil and squash. However we also have trees, flowers and plants that need caring for. And don't forget the passion fruit vine! We were very excited about our first flower ever.

I have an incredibly full and satisfying life that has nothing to do with my disability. I feel very fortunate indeed to have so many outlets and such a big life. 

Turn for the Worse

On April 20th, 2022 I had my Botox for Migraine as usual. I get it every three months. It's a big deal when I'm eligible to have it done again as I'm usually a good month past needing it. This time I felt I was around six weeks past needing it.

Each time I get it the results are different. But typically every other time it is a solid 6-8 weeks of no migraine headaches and greatly reduced other symptoms (like aura's, vertigo and other vision issues.) The last two times were a bit of a dud, so I had high expectations for this round.

This must have been what Norm felt like rolling into Cheers every day.

This Botox session was different from the start. It hurt a lot more and I bled a lot, which had never happened before.

So that was April 20th.

Two days later on April 22nd a small blood vessel burst in my left eye. No big deal. I call the left my "bad side" because that's where I had brain surgery three short years ago. Although I haven't had a burst blood vessel in my eye in five years.

Three days later I could tell I was getting some kind of mouth and tongue infection. It felt like thrush maybe? But I had blistering too. Shit was starting to get a little strange.

Blisters under my tongue.

Webbing and redness inside my cheeks.

"Geographic tongue" (the spotting) and coating.

I tried treating it myself with salt water gargles, but by May 3rd it was bad enough for me to just go to my local Urgent Care. The doctor there wasn't so sure it was thrush and thought it might be an autoimmune reaction. She prescribed me two disgusting mouth washes and I went along with my life.

When I went in I had tongue pain, a sore throat and pain deep in my left ear.

Just four days later on May 7th, a large blood vessel AGAIN in my left eye burst. WTF! Now I was getting a little freaked out. I messaged my doctor and he confirmed it was just a burst blood vessel. Nothing to do but wait it out. It wasn't painful. Just a little itchy. And I felt like I looked like a zombie for Mother's Day. How fun!

My husband took this graphic picture for me.

It looks like it burst up, then the blood trickled down.

Nasty!

You'd think that would be the end of it.

But wait! There's more!

Now the excruciating migraine headaches started.

The first one lasted 24 hours. From May 9th-10th. I took my usual trio of medications to try and help. Compazine (for pain), Naratriptan (for nausea) and 1,000mg of Ibuprofen (just over the counter stuff.) I call it my "trio of helpers." I can't take them more than three times a week though. 

The second migraine was thwarted by the "trio of helpers" and only lasted five hours. That was the very next day on May 11th. On May 12th I was hit again, but couldn't take my meds so close together, so I tried to ride it out. Nope. Now I was getting scared. On the 1-10 pain scale I was at about an 8 and seriously considering going to the hospital. 

During the middle of the night on May 12th I awoke in the middle of the night to the familiar tingling feeling of a fever blister forming on my top lip. I hustled to the bathroom to dig out my herbal treatment and "doctored" it. Shaking my head I went back to bed. 

Hello fever blister.

Welcome to the party!

During the night on both the 12th and 13th it felt like something was draining down my throat. I started to wonder if I had formed some kind of abscess from one of my shots and it was draining now? The pain in my left inner ear was worse, but that could be from some kind of inflammation or pinched nerve. I was also now 100% sure that my poor immune system was being severely compromised. 

My nurse practitioner who did the Botox shots has ordered a shot of Compazine and Toradol for the head pain. I wanted to go and get it yesterday before the weekend hit, but my insurance didn't approve it yet. Seriously!?! She also ordered me a nasal spray to try through our local compound pharmacy. But it's a special order and will take some time to create for me. As much as I appreciate her solutions, it's not helping me right now. 

Today is May 14th and I'm typing this with a fever blister, migraine headache (though it is slowly improving) left ear pain, mouth discomfort and a sore throat. I'm constantly torn between trying to "ride it out" and going to the hospital. I also can't stand not knowing what's going on with my body. I like answers and solutions. 

UPDATE (June 1st):

So I believe I had a severe sinus infection that I just couldn't feel because of the Botox. What a weird thing to have happen. I suspect it was caused by my BiPap machine, so I have completely stopped using it.

After three days of "drainage" (nice word for puss) down my throat all night long I felt much better and the pressure was off my ear. I think the pressure from the infection caused those blood vessels to burst in my eye. Then my body fighting the infection caused all the other things (tongue issues, fever blister, etc...)

I had my doctor test me for sepsis just to be on the safe side. Everything was negative. I still have a strange rash that he'll check out for me Friday. I was pretty sick for almost the entire month of May. I may never know what really caused it, but I'm being much more cautious now. I'm also very impressed that my body fought it off all by itself.

Nothing Short of a Miracle

Hello!

Long time no see.

Why not?

Because I just didn't have the energy.

A few months ago just the simple act of showering or dressing for the day was leaving me exhausted. My "afternoon rest time" was more of a coma that would last 4-4 1/2 hours each day. I had just enough energy to bathe daily and try to spend time with people I loved. That's it. And things felt like they were just getting worse from there. I lived in fear of becoming bed bound.

I reached out to my muscular neurologist in a last "Hail Mary" plea. I let her know my fears and how bad things had become. She had one last suggestion that we hadn't tried yet. A new drug being used to treat muscular diseases (*off label) called Amantadine.

I started Amantadine about six weeks ago. The difference was immediate and drastic. I would call it a miracle. It immediately gave me more energy than I'd had in about five years. Not only that, but it helped decrease my vertigo symptoms as well. Something nothing else had been able to do, even Botox.

Then something even more fantastic happened. My "rest time" decreased to an average of two hours. I gained back 14 hours of my life per week. That is so amazing that I can't even express it. That's like all of the Harry Potter movies every week's worth of time.

Also what changed was that energy translated to more muscle strength. Even though it didn't help my muscles directly... having more energy meant I could accomplish more in a day, which often required muscles. Like cleaning, gardening, fixing my hair, putting on makeup. Things that before I had very little energy for I could now do back to back to back. Laundry, cooking, playing with my dog. You get the idea. All requiring muscle strength and stamina. So the more I did, the stronger my muscles became and I had a little more stamina each time.

And now the HUGE news.

Yesterday I did something I haven't done in five years.

I walked my dog around the block using just my cane.

Yup. It felt like I had just climbed Mt. Everest. I was elated. 

I called my husband right away and he was just as excited as I was and so proud of me for pushing myself.

So yes, I still have my muscle disease. I haven't been "cured." But I have a huge chunk of my life back. I hope to continue to build on this. I will gently push myself and listen close to my body. I'm still down 30lbs from where I was last year, which is another thing to be proud of. No easy accomplishment. Any of it. 

I'm proud that I asked for help. That I communicated what was going on with me to my medical team. That I listened and was always open and willing to try new things. And that I'm fortunate enough to have good medical care! I feel lucky, resilient and determined. 

(I received no incentive to write this. Amantadine is also called Gocavori. Here's more information about it if you're curious. I don't have Parkinson's, but it still helps me.)

*"Off-label" means the medication is being used in a manner not specified in the FDA's approved packaging label, or insert. Every prescription drug marketed in the U.S. carries an individual, FDA-approved label. This label is a written report that provides detailed instructions regarding the approved uses and doses, which are based on the results of clinical studies that the drug maker submitted to the FDA