Same Symptoms, Different Day

I used to keep a running list of my symptoms and share them with all of my medical providers at each appointment. This was helpful in the beginning because we had no idea what was wrong with me. When I started the quest for a diagnosis it was 2018 (2 years ago) and we were thinking it could be rheumatoid arthritis? An autoimmune disease? All I knew was I had a lot of pain that left me crying at night.

What it turned out to be was:

• Stocking glove pattern neuropathy
• Benign brain tumor
• Metabolic/Mitochondrial Myopathy

I also had a complete hysterectomy in 2015 due to major reproductive health issues.

I assumed at the time that my problems were mostly neuropathy (that I believed was caused by my Latent TB treatment the year before) and autoimmune. My symptoms were all pointing to RA being the main culprit. But then the sudden muscle weakness hit. From one day to the next I suddenly lost about 80% of my strength.

It took a very long time and many referrals to solve the riddle of my muscle weakness. The current consensus is that my mitochondrial cells (the power cells of the body) don't process energy correctly. I have 3 genetic mutations that have been identified that could be the cause. All of this is pretty new science so everyone is really just doing their "best guess." I've learned to be the expert in me.

Unfortunately either the brain surgery that I had in 2018 or my Mitochondrial Myopathy have cause me to also suffer from Vestibular Migraines. Shockingly these have been more crippling than my myopathy. So if you're keeping track it's:

• Vestibular Migraines
• Metabolic/Mitochondrial Myopathy
• Stocking glove pattern neuropathy
• Osteoarthritis (and possibly RA)

It's been about a year since I posted my symptoms. I also don't really keep track of them anymore. There's a few reasons for this. 

1) I'm tired of talking about it, looking at it and only being a "sick person."
2) My symptoms haven't really changed.
3) It's more useful to alert my healthcare team about NEW things if/when they come up.
3) New symptoms can get buried under my massive list of health issues and get overlooked by my doctors.
4) I have a great team who keeps good records of my health diagnosis, visits and concerns so it's a bit redundant at this point.

Rather than bringing in a list of symptoms with me now to an appointment, I bring specific concerns and/or questions that I have. I always take notes and I very very rarely go alone. This helps make sure I don't miss anything (as my memory can be a serious issue).

When I look at the list of my past symptoms I still have all of them. However, I also have treatment that helps me manage them. I feel positive that I will soon have treatments in place to help 100% of my symptoms be bearable.

Habits

My mother and I describe ourselves as the "Queens of lists". Every week we sit down and make a list of things we've been talking about. Usually something on a deep level or something we'd like to explore and grow in some way.

Last week we were discussing habits. Specifically things we'd like to become more of a "good" habit. Here's what I came up with:

Of course I also listen to my body. She comes first and sometimes habits fall by the wayside. Like this morning we were going to go swimming together, but my body just screamed "NOPE! No spoons for that today!" And I listened. Not something I used to be able to do at all, so I guess it is a new habit after all?

Here's me participating in some new weekly habits.

My new habits combined with my refusal to compare myself to my "old" self have resulted in something I really needed. A new routine in my life. A new way of living and being in the world. Which have resulted in this!...

Vestibular Migraine Update

April 14th, 10 weeks ago now I had my first round of Botox to see if it would help my Vestibular Migraines. Here's what happened.

• Weeks 2-4 my headaches slowly faded in both duration and intensity.
• Week 6 the dizziness went away overnight. I felt the best I'd felt in a very long time.
• Week 9 the headaches came back. First just one normal feeling one, then a worse one that lasted 48hrs. Now they come on daily and I'm taking a Rizatriptan Benzoate ODT 10 mg tablet as soon as I feel it come on. That's been helpful.
• Week 10 the dizziness is back.

My next injection round is scheduled for July 14th. I asked if I REALLY have to wait that long or can I get it sooner. The answer as with all things in the US is my insurance will only pay for it every 90 days. F*#&!!!

Now I have a little less than three weeks to go and I'm feeling shitty. Although it is great to know just how effective the treatment is! I was also told that the more I have it the more effective it will be and the longer it should last.

My only side effect has been a strange muscle cramp I get sometimes in my forehead. I think that's just part of my myopathy because I'm constantly getting muscle cramps and spasms. But it looks and feels very strange. Fortunately it only lasts about a minute.

Don't lie. I look like a Klingon!
Normal is top. Muscle cramp is bottom. Really funky sensation.

I'm so grateful to have a team of doctors figure out what the heck is wrong with me. I never would have guessed all this was migraines. Now I'm counting the days till I can get 32 shots in my head again. 

Mermaid Time is Here!

FINALLY!!! IT HAPPENED!!! I'm the luckiest mermaid ever.

The swimming pool at my Mama's senior community opened up. The water is perfection. She and I couldn't wait to get to use the pool in her beautiful neighborhood. Covid delayed our anticipated dip, but it also made us all the more eager to be the first ones in.

I adore swimming. I always have. I feel most at home in any body of water. That's why when my muscle disease came into my life two years ago I told people "I'm just turning into a mermaid!" I always knew I was one.

Water is also the very best way for me to get exercise. It's supportive and safe on my muscles. Like all things though I have to be very cautious not to do too much. Which is exactly what happened on the first day we swam. I learned however and adjusted. Now I have two pool noodles. I stick one under each arm and try to just move my hands, torso and legs. Not so much my arms.

The hardest part of swimming is getting out. Not that I don't want to get out (but that too), it's because my body then feels to weigh about 1,000 pounds. It's a serious strain and very challenging, but I just go slow. Even if the pool had a wheelchair lift I don't think I'd use it (*yet). It's a good workout just getting in and out.

In fact... putting my suit on, getting to the pool, unhooking my wheelchair, getting in, swimming, getting out, drying off, getting my suit off, taking a shower, getting dressed again is about 99% of my spoons for the day. It's a serious workout for my body. But it's also one I'll enjoy doing for as long as I can.

I AM

When I became disabled I had a very hard time not comparing myself to my "old" able self. It was constant. If I spent time in the garden watering I would tell myself "Well, you USED TO be able to be out here for hours". See what I mean? Comparisons.

Nothing good ever comes from looking behind. It has taken me a very long time but I feel a shift. I think I finally moved past comparing myself to what I used to be able to do. It has been a huge liberation!

I can't pinpoint what caused it. I've been aware of how damaging it is and unhelpful, but I just couldn't stop it. It literally had tentacled its way into every aspect of my life... just like my disability. But unlike my disability it is something I can control.

What helps is being mindful. Fully present in each moment as they come. Not having judgement on my life and what I can and can't do. Just enjoying it for what it is. Once I made that shift in thinking, I was FREE! Free to enjoy my life and each moment as they came. 

So now I AM a person who:

• Can ask for help
• Lets others help me
• Does my best and lets it rest
• Is MUCH happier
• Is seeing the beauty all around me
• Is more confident
• Is less judgmental of others
• Has a lighter heart

The Curse is Lifted!

I have my days back

I'm thrilled to share that I FINALLY found something that keeps me awake all day long without any side effects. It's THIS! Orgain Organic Nutritional Shake.

This is the first one I bought and tried.

I have no idea why it works for me. 

My guess is that my body just doesn't absorb nutrients correctly to get them to my mitochondria. So I would be totally depleted of energy by the afternoon. But when I consume a lot of them in liquid form my body can somehow use it more efficiently than by eating. 

I'm so grateful that I found this product and that it works. Now I'll be looking around to see if I can find other things that work just as well but for less. Each drink costs me between $1.90 and $2.50 depending on the flavor. I use it as a meal replacement, so it's not as bad as it sounds. But since I'm unemployed right now I want to try and save us as much as I can. I'm also curious if something like a vitamin water would work just as well or if it has to be with protein too.

At first it felt really strange to have a full day back. Like I flew to another country where their days are twice as long. Now after about two weeks of it I'm getting more adjusted. It's wonderful! I still have to be careful not to do too many things at once. 

If I spread my activity out with resting a lot in between I feel much better. If I push myself I'll end up with shaking muscles and sweaty. Then it will take about an hour for that to stop. Ugh.

I have a check in with my muscular neurologist this week where I'll let her know about it. I want to discuss my increasing pain and muscle spasms with her. 

I haven't used the CBD/THC pen at all since I discovered the drink worked even better with no side effects. One pen cartridge is the same price as 12 drinks, but it's much better for my lungs. I also never drive with the pen and I can drive a little in town normally. That's a big thing to have to give up to stay awake if I used the pen instead.

I can't tell you what a relief it is to have a big chunk of my life back. I'm so grateful that I stumbled on this product. Fingers crossed that it keeps working!

I have zero affiliation with any product I ever talk about on my blog and received no incentive to write about it. 

Punishment disguised as self-love.

Punishment disguised as self-love

Going out with your friends and pounding back drinks can seem like a good time and a good idea on the surface, but underneath that you're just hurting yourself physically. Or the messages that women get all the time that by applying chemicals to ourselves (hair dye, anti-aging cream, makeup, etc) we're somehow treating ourselves. 

Personally I struggle with over-eating or eating things that don't help my body feel good. At the time I tell myself it's a "treat" or "special" but it only leaves me feeling unwell and at a weight and size that has negative repercussions for me.

Again that's a message we all get in Western culture. "You're worth it!" While a billboard shows someone shoving a massive burger in their face. It's a rare person who would feel that "health food" would be some kind of a treat or reward. 

But when you scrape the surface of most "rewards" you will find they are actually punishments. So how can I break that cycle?

• Patience
• Mindfulness
• Changing my vocabulary around food (like "good" or "bad")
• Find pleasure intrinsically

Mindfulness teaches us that there is no "first pain then pleasure" but instead to find the pleasure in everything. That goes against what we're taught as children and takes a lot of time to re-learn how to do. The example most often given is in washing dishes. Don't rush to "get it over with" but instead really be in that moment.

So perhaps rather than focusing on rewarding myself with things that I know will hurt me in the end I should go slow, be mindful and find the pleasure and reward in every action.

I believe children naturally get this. It's the adults and our society that teach them to rush on from one thing to the next calling some things "work" and others "play." But science shows that when you're rewarded for something you enjoy doing it takes all pleasure and motivation out of wanting to do that thing. Reward actually robs you enjoying that moment.

I'm going to try to be more child-like in my food. Enjoying it for what it is... Food. Not comfort, not a reward, not sex. It's food and that should be enough.