Terrifying Side Effect

My health feels overwhelming most of the time. 

Yesterday I had a major episode that was truly terrifying. I had my annual flu shot in the morning. I've never had an issue with it ever in the past, nor with any other vaccination. Ever. Yesterday was a first. Three hours after my shot I felt myself getting weaker. By five I was terrified. I was home alone and my muscles were so weak I could barely work my phone or speak. I though about calling my mom over, but my husband was due to be home any second. I also thought about calling 911, but I didn't want the dogs upset. (Yes... even my dogs come before me.) 

Finally my husband came home. As soon as I started talking to him I started sobbing. I mean 'snot crying' big time. I could hardly get out what happened to me between the tears and muscle weakness. Somehow he understood. I asked him to make me a Gatorade. The last in the house. It has helped in the past. He then crawled into bed with me and comforted me. It was all very helpful. I decided I would wait and see if I got any worse and if I did, then I would go to the hospital. 

Fortunately I didn't get worse. After about 90 minutes after the Gatorade I even improved a little. The tide was being pulled back. I was so scared. To suddenly lose your muscle strength like you've been hit with a blow dart. It is a very horrific thing to experience. I haven't had that happen to me for about four years now. The last time I went to the hospital by ambulance. 

I still feel weak today. When I went to the hospital what made me better was a full IV fluid bag and antihistamines. Strange. My body is such a complex creature. When she's unhappy, she lets me know it with both barrels!

I've been very busy lately. Living my life to the fullest. Family, kids, the ballet, stand up, late nights, company, booze. Not sticking 100% to my short chain fatty acid diet. Working out extra hard, pushing myself over my limit. It's time to pull back and turtle up for a bit. Let my body calm down and recover.

A little taste of my busy life

Post Script - My muscle weakness got much worse after I wrote this. My neurologist had a nurse practitioner call in and check on me. I had sent them a message last night about what happened. She urged me to go to the ER to run labs and just double check that I hadn't had a stroke. 

After 3 hours there I had every reassurance that what I thought had happened was what happened and nothing else. No infection. No stroke. Nothing else. It was very scary though and I'm for sure skipping my flu vaccination next year. This morning I'm feeling much better. 

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.

The A Team

It's all coming together now. The "A Team" is assembled and ready to fight my Metabolic Myopathy. 

I'm so happy I could burst!

Yesterday I had my much anticipated appointment with a place called PMR (Department of Physical Medicine and Rehabilitation). There I met a fantastic doctor who not only had heard of my condition, but has other patients with the same thing across a spectrum of disability. 

She heard me when I talked, had read my chart ahead of time and had fresh insight into my care. It was so wonderful I almost cried. She reviewed my tests and records with me and took a baseline of my lung functioning. Something no other doctor had done before. She ordered some new labs for me and gave me recommendations for things to try.

At this clinic I will be assessed and followed for future mobility tools that will work the best for my needs and body. I'll also be connected with the MDA (Muscular Dystrophy Association) for additional resources. During my appointment she shared that there are 600 discovered muscle diseases related to MD as of right now, but more are being discovered all the time. FINALLY! FINALLY someone agreeing with the research I had been doing for years on my own and offering me real help. 

So now I have a great neurologist, this new knowledgable neuromuscular doctor, my fabulous PCP (Primary Care Physician) and my patient advocate who helps coordinate my care. My husband and I call them all "The A Team" (because 1-It's funny and 2-My name starts with an A).

Knowing that I have medical professionals who understand my illness, are looking for ways to help me live my best life and who listen to me is such a relief. It took about two years to get to this point and a TON of work on my part so I'm savoring this feeling of being helped and supported like never before by my A Team.

When did Myopathy start?

I've always placed the start date of my muscle weakness April 26th 2018, 13 days after starting Plaquenil. My husband has felt that it was the Plaquenil that caused my Myopathy. But I had a memory the other day that places the real start date MUCH earlier than that. 

I remembered being at Disneyland in November of 2017 and feeling like I was being especially tossed around. I even told my husband that I felt "weird," like my muscles weren't holding my body in place like they should be. Upon looking back I'm wondering if that was my first sign of myopathy.

Not having a very specific diagnosis is frustrating, not having a clear cause is also frustrating, but now not even really being clear when it could have started? Yes. That's hard.

Is it just a genetic mutation that somehow got turned on? Was it the affects from my brain tumor that I'd had since at least 2015? Was it from the Latent Tuberculosis or the medication used to treat it in 2016? Is it from the Plaquenil I was put on in 2018? I may never know. 

Having a chronic illness often means endless doctors appointments, new symptoms that sprout up literally overnight and having more unanswered questions than answers. I'm slowly learning how to live in this zone of "unknown".

I may not know exactly when my muscles started breaking down, but I do know how it rules my life today. I know I can't dwell on what I used to be able to do yesterday that maybe I can't do today. And I can't focus on what I may not be able to do tomorrow. I live each day as best I can and feel grateful that I'm not in this alone. 

Plan KA Day 1

As I said in my previous post, I am re-committing to PLAN KICK ASS to better my health. Here's how day one went down. In the words of my husband "You crushed it!"

My lunch was high good fats and high protein. Three scrambled eggs with mushrooms, onion and peppers all served up like an open face omelet. No gluten free bread and no cheese. It was delicious and kept me feeling full fo a very long time.

Dinner was very veg heavy. My amazing husband planned, bought and made these beautiful sweet stuffed peppers. I made the brown rice and salad with tomatoes and cucumbers.

I don't have the spoons to make my own salad dressing, but this is the BEST Italian vinaigrette I've found. 

Every morning I still indulge in my wonderful cup of Java. I'm not ready to give that up yet, but I am trying to make that my only sugar for the day. I'm also cutting out cheese except for Goat because it's very low in calories, high in protein, full of good fat and Goats are treated better in my country than dairy cows. So that's just a win all around. My husband minces fresh herbs in it and OH MY! It's amazing.

My snacks have been fresh fruit and these bulk bin beauties. Raw almonds.

We were eating a name brand's "Smokehouse" almonds until I looked at the ingredients. Ack! Always look at the ingredients.

As far as pushing myself physically went, I seriously took that to heart. I walked my puppy girl by myself around the block (a really big deal for me), did about 3 loads of dishes, 5 or so loads of laundry, scrubbed out shower/tub, cleaned the bathroom and tidied up. I laid down for a bit, but honestly felt too full of energy to sleep! 

My body did really well till around 6PM. Then my muscles went into revolt. Cramps and soreness kicked up, but I expected it.

I like Friday to be my "big push" day because then I have the weekend to pull back a little bit.

So far, I'm really glad I made this change. My husband is 100% on board and being really supportive and amazing. GO PLAN KICK ASS!!!

What the heck body?!?

At 9:30AM this Monday my body decided to freak out. I was at work and suddenly felt zaps in random parts of my body that made my muscles twitch. It felt like being mildly electrocuted. I also felt very weak and dizzy. My vision blurred and I struggled to focus. My face felt more numb than usual and it was a challenge to talk. I held on for as long as I could, but finally texted my husband to come and get me. I was afraid to drive given the dizziness and blurred vision.

My gut reaction was to go to the hospital. Even to call an ambulance as I wasn't sure how far I could walk. But what would they do? What could they really do? I didn't feel like I had experienced a stroke. My heart felt fine. It felt like my Myopathy had suddenly gotten worse for God knows why or how? I have a rare condition and there's nothing the hospital can do about that other than test me for a stroke. It would be a waste of everyone's time.

Instead I had my husband call my doctor and talk to the advice nurse. They said to go to the hospital. I refused, laid in bed and cried. My husband comforted me and made me feel a lot better. All of this was very scary. My little dog also gave me comfort, refusing to leave my side.

She even lurked in the bathroom with me. 

I deduced that I might have a bladder infection and that could have sent my body into "CODE RED! SEND ALL ENERGY AND RESOURCES TO INFECTION FIGHTING!" I started antibiotics yesterday and am feeling a little better today. I hope to go back to work tomorrow.

It's terrifying how fast my muscles can just shut down. How even talking can become a big challenge. I know it was scary for my husband to see me like that too. Chronic illness isn't for the weak! Every day is some kind of new test. I'm so lucky to not have to go through any of this alone.

Swimming in the deep end of life

I love the Ocean. I always have. When I was a little girl I used to spend all day every day every summer swimming and pretending I was either a mermaid or a shark. I love them both equally. The more my arms and legs stopped working the more my love for mermaids grew. I liked to think that I was just a land-locked mermaid and not a disabled woman. Isn't that thought more fun?

Last weekend my husband took me to the "Bubble Ball" at a mermaid convention in our town. Who even knew there was such a thing? You had to come dressed as either a mermaid or a pirate. I was thinking "What's there to do at a 'ball' in a wheelchair?" Turns out tons of stuff!

Me being me I had to dress as a "Princess, mermaid, fairy, shark" and not just a mermaid. "Where's the shark?" You might be thinking? I have 5 gills on my neck. Hehehe.

My husband was "Mr. Smee" from Peter Pan. Smart guy that he is he picked a comfy outfit in the sweltering heat. 

There was a magician who was amazing and looked a lot like "Captain Jack Sparrow" from the Pirates of the Caribbean movies. 

There were games, photo booths, tarot card readings, magic, stage shows and all kinds of fun to be had. I did get a little bit of chair dancing on at the end too. We had a fantastic time. I'm glad I didn't let my hesitation of "going to a dance in a wheelchair" get in the way of me letting my inner mermaid (princess, fairy, shark) shine!

A year of struggle

In the beginning of May 2018 I had severe onset of muscle weakness in my arms and legs. I thought at the time it was a side effect from the DMARD I was on for RA. My neurologist believes I have a rare form of Muscular Dystrophy called "Metabolic Myopathy." If you get even more specific he thinks I have "Mitochondrial Myopathy." 

In short it means my energy cells, the mitochondria in my body, suddenly stopped processing energy the way that they should. It also means this can happen to any muscle in my body at any time. It just happens to be affecting my arms and legs right now. And yeah, it's also rare, progressive and there's no cure. I really need to start playing the Lottery.

So far I've had a countless medical appointments, a spinal tap, EMG, MRI, reflex tests, gene sequencing, scraped with a safety pin and in a few weeks we can add a muscle biopsy to this list. I've given enough blood to feed an ARMY of vampires, but it was all worth it just to hear my neurologist say "YES! You have something, and I think I know what might help."

I've been on a high dose of enzymes and amino acids for about 2 1/2 months now. It's literally the only treatment for my condition. I'm learning that the more rare the thing you have is, the less likely there's a current medical treatment for it because there's no profit in it. No profit to be made = no research = no treatment. Fortunately for me the treatment has just started helping. 

Gone are the 4 hour naps during the weekend. I'm actually able to help with dinner when I get home from work and get things done on my days off. My muscles are still much weaker than they were a year ago, but I have far more energy than I have had in years and years.

Today I was able to go out in the garden and work in the yard with my husband. I can't tell you how fantastic it felt to be out in the sunshine moving my body again. I used my trusty Nordic Poles and took lots of breaks. Don't get me wrong, I was very spent physically after and I had to take an Ibuprofen, but I did it!

My husband has been buying me a lot of electrolyte water to see if that helps as well. I noticed my muscle weakness was better for a little while after my brain surgery in September. But I also realized they only let me drink blue Gatorade in the hospital (not water.) I connected that it might have been all the Gatorade that helped my muscles. Heck, I'm willing to try just about anything that can help. But I'm so thrilled we landed on a treatment that I'm responding to and a name for what it is that took so much from me this year.

First Day Working in a Wheelchair

Despite having the Chief of Staff as my personal Neurologist from a world class health organization, my suspected Mitochondrial Myopathy remains un-daunted in her course of destruction. I've been trying different coenzymes and amino acids along with electrolyte water, but so far there's no difference.

Last Thursday I pushed my walking abilities a too far and feel like I never recovered from it. My legs feel much worse. Monday at work I "pushed through it" like stubborn people seem to do much too often. Tuesday I used "Meg" my wonderful rollator. But by Wednesday even she wasn't cutting it. The big problem in my office isn't really getting from A to B. It's all the chatting that seems to happen between or at those points. In my job that "chatting" is really important, but it's physical torture. Sure I can sit on Meg when someone starts to talk to me, but then I'm up again to finish what I was doing. Then all the sitting, pushing and getting up and down is just too much for my poor muscles.

Wednesday was hard for me. Wednesday night I came home and had a good cry. I was angry that my neurologist hasn't gotten back to me, angry that my medications aren't helping, angry that now my eye muscles seem to be straining and weakening, angry that I felt like I wouldn't be ok at work unless I used my chair. And frustrated. And upset. And sad. And...

(Smile girl!)

I told my husband that every single aspect of my life is now not only affected by my health struggles, but I have to think about it every second of every day. "Can I stand that long? Can I walk that far? Can I fit through there? Is it accessible?" From work to shopping to "fun" outings to sex there isn't one part of my life that isn't now touched by this. And it sucks. And I'm mad. 

I actually don't take comfort in knowing there are 650 million people in the world with disabilities. I wouldn't wish this on anyone. Our world is not made for us. For the "different." As anyone with Autism or who is a Little Person can tell you. We are a "one size fits all" culture and that size better also be 100% healthy and move on 2 legs. It's makes no sense. 

But now for some some positives. I'm very fortunate that where I work is super supportive and the office is about 95% accessible. Also the job I do I can do without any modifications at all from a wheelchair. No problem-o. My clients did look surprised and asked if I was "ok" but I'm pretty used to that from pushing Meg around. I also welcome questions and am very open. So Thursday Ariel came to work with me. And like every time I finally use my mobility devices, my life became worlds easier. I was in much less pain and my muscles thanked me for using my brain and my tools. 

My plan is to get Dory to my office (somehow) over the weekend and leave her there. She will then become my "work chair" and Ariel will be my home and "out and about" chair. It will work great if I can just get her there. I know Uber does have wheelchair service, but might not in my area. The public bus is my last resort simply because that will be super stressful and I've never done it in a chair before. 

I'm convinced life is nothing but a series of unpredictable events. You can make plans and think you know what's going on, but she likes surprises! I'm just trying to be mindful and focus on each day as it comes and what I need that day to enjoy it as much as I can. 

December Symptoms

I noticed it has been a very long time since I shared my symptoms here. Not since July to be exact. 

July, 2018 Symptoms Blog Post

May, 2018 Symptoms Blog Post

I also noticed that back in July I talk about using Meg, my rollator. She's become like another limb for me. It's really hard to imagine it has only been 5-6 months that I've been using her. Now I consider "only using Meg" to be a very good day. Anything more than a 1 store stop and I need more than just Meg.

So here's what I'm currently struggling with: 

•   Instability when walking in both legs. 


•   Gradual muscle fatigue when standing and walking in both legs.

•   After apx 420 steps extreme leg muscle fatigue. 


•   After apx 420 steps thigh muscles start shaking with muscle fatigue. 


•   After apx 420 steps legs muscles feel strained and mildly painful as if they had major exertion (like ran a marathon.) 


•   After apx 420 steps face and body break out in cold sweat (takes hours to recover from the feeling of major muscle exertion.) 


•   Frequent muscle cramps, twitches and spasms: arms, legs, arch of feet on the bottom, torso, right eye. 


•   Bottom of feet feel sore like I ran a marathon. Deep muscle ache. Especially in the morning and at night. 


•   Not able to sexually climax since muscle issues started. Muscles fatigue too quickly, even with pillows 
and support. 


•   Minor muscle weakness in right hand when compared to left. 


•   Arms fatigue (again, feel strained as if they had major exertion) when: brushing teeth, shampooing hair, cutting food, cooking, pushing a broom, minor activities like shopping. 


•   All muscles start off at normal strength, but fatigue with use much faster than typical. 


•   Constant back, neck and right shoulder pain. 


•   Constant stocking glove pattern neuropathy managed with Lyrica. Began 2015 post Latent TB Treatment. 


Treatment/Modifications: Rollator, transport wheelchair, electric wheelchair, reduction in house chores, rest in between activities, major reduction in physical activities, use electric scooter shopping carts, hot water bottle for back and neck, Ibuprophen PRN, warm showers, muscle rubs daily, not lifting more than 20lbs, home modifications like safety bars, cooking stool, etc. 


I also keep a running list of my testing flags and medical issues in the hopes it will help. I bring this list with me to every single doctors appointment that I have. Honestly, the doctors barely glance at it. They say something like "Well aren't you prepared" and then just put it down on the counter and proceed to ask questions that are answered on this sheet. -sigh-

I did have a bit of good news this week though. My neurologist messaged me to say that he feels my latest lab tests are matching his suspicion that I have Metabolic Myopathy and that's the source of my muscle weakness. I hope he's right and at my January 9th appointment we can begin some treatment. 2018 Has been a challenging year. 

My new travel wheelchair

Ariel, my new Fold and Go electric wheelchair, arrived yesterday. As you can see I was a bit excited to try her out for the first time.

So excited in fact that I didn't even bother to put shoes on. She's smaller than my other chair, but can fold right up and go in my car. At 55lbs my husband can get it in and out, but we're still trying to figure out a way that I can do it myself. There was once a time where I don't think that would have been an issue, so that's a bit frustrating. However, I'm an expert problem solver and I know I'll come up with something.

I also sprung for the travel protection bag and cup holder. Ariel and I are going places baby! She'll be coming with me to Hawaii in January and possibly Phoenix in April. That is if my doctors still haven't "fixed" my muscle weakness issues. 

I'm excited to have her and will take some better pictures later.

I RECEIVED NO INCENTIVE OR KICK-BACK FROM FOLD AND GO TO WRITE ABOUT THEIR PRODUCT. (But I wouldn't say no if they wanted to give me some free loot.) 

You may be wondering why all my mobility devices have aquatic themed names? The reason is two fold.

1. I love the ocean, sharks, mermaids and all the creatures in the sea. Growing up in California I've always been an ocean loving girl.
   
2. Losing the use of my leg muscles made me relate even more to all things that can swim. Ariel is a mermaid who (duh!) has a tail instead of legs. The more I lose my ability to walk for very far, the more I think of myself as just turning into a mermaid. It's a mental health trick that works great for me. I still love the water and love to swim. So there you go! 

Long Awaited Answers

California has been buried in smoke these last few weeks. But despite the scary air quality I've been working 30 hours and attending my never-ending slew of medical appointments. Last week was the much anticipated EMG to test the electric nerve impulses in my arms and legs. Everything looked fine. But yesterday was the BIG appointment with the Chief of Staff of Neurology. The big cheese. The head honcho. The person with whom the buck stops. 

Well, we possibly have some answers as to what the heck is going on with my muscles and why I start off strong, but then get weaker and weaker. He thinks I might have a rare genetic condition called Metabolic Myopathy. Basically what it boils down to is the muscles don't use energy how they should and they progressively get weaker the more they are used. BINGO! It sounds like we may have a winner.

Of course this means more testing and more testing and more testing because there are different types of MM that require different treatments. So now we're doing all that and I won't go back to see this "Magic Man" till January. Drat! More waiting.

Charities known in Greek Mythology as the Three Graces

So now much like the Three Graces I'm trying to spend this time bringing "Brightness" (like Aglaia), "Good Cheer" (like Thalia) and "Joy" (like Euphrosyne) to myself, my family and my work. I'm relieved to possibly have an answer, but also a bit broody about the whole "more waiting, more testing" part. Of course a bit of jewelry never hurts to help me keep in good spirits.

In case you're keeping score, since 2015 I've now had:

1. Latent Tuberculosis
2. 9 months of awful treatment for TB that left me unable to do anything
3. A total hysterectomy
4. Stocking and glove pattern peripheral neuropathy
5. Rheumatoid Disease
6. Raynaud's Disease
7. Meningioma (benign brain tumor on my left temporal lobe)
8. Brain surgery
9. Severe Muscle Weakness (possibly Metabolic Myopathy) 

They say what doesn't kill you makes you stronger. 

I think I'm now a super hero!

A Lot to Learn

I've spent most of this weekend getting to know how to use my new electric wheelchair. I decided to name her Dori after the Greek sea Goddess. Also if you spell it Dory then it's from a famous Disney fish who likes to sing "Just Keep Swimming" which is a great motto.

My husband has been out walking next to me while I'm rolling. We even figured out how to hold hands! Most impressive. So far the hardest thing has been managing big curbs. My wheels either spin, or a I go too fast and give my husband a minor heart attack. YouTube videos have been helpful for me. The dude who dropped my chair off and adjusted it for me told me to go at a big curb at an angle, but the manual said to never do that. YouTube seems to agree with the manual and tell you to go at it straight. So much to learn!

I'm a busy bee

I also am practicing opening doors and maneuvering through small shops. That's going really well, though people keep trying to open doors for me while I'm practicing. In fact, people have been especially nice while I'm in my chair. That's something I noticed when using Meg (my rollator) as well, but not quite to this extent. 

I told my husband that if you use a store electric cart people can be down right rude. But use a mobility device that's yours, then they change their tune. And apparently the more disabled you appear to them the nicer they are. Why can't we all just be nice to everyone all the time despite health and mobility problems?

One of the things I love best about Dori is that I'm no longer at butt level with people like I was with Shirley. It's just a bit higher where my eyes are more at the small of their backs. That's an unexpected perk and comes in very handy in crowded places like our Farmers Market.

I still don't have any way to transport Dori other than to use her around town. I need to look into our bus system and van system for chair users in our town. I'm also waiting for my new blue tag for my car. My temporary red one expires in 7 days and I'm starting to feel a bit anxious about it. 

Buzz buzz, so much to do!

The Current Plan

I haven't been talking about RA much lately. The Cymbalta I've been on has really cut down my joint pain (and helped my mood to boot!) My symptoms had seriously decreased till the last few days. For me stress = flare. Fortunately this time it's a small one. I know what to do. Wear my compression gloves and take my foot off the gas of productivity and rest rest rest. That's the plan for today.

My Rheumatologist isn't treating my RA until neurology is done with me and I think that's going to be a while. He's not sure if my sudden muscle weakness and muscle fatigue is connected at all to my autoimmune system, or if it's something neurological. So this means I'm in some kind of strange limbo with my neurology team running endless tests to try and find a cause. So far, nada. Although they did find my brain tumor, so I feel a bit rude nagging them.

Here's where I'm at so far in all this "chronic illness" health mess that is now my life:

• Next Tuesday - My first full brain MRI post-tumor removal
• Next Thursday - My first electric wheelchair is coming
• Monday November 5th - My first day back at work
• Wednesday November 7th - My 2nd follow up with my neurosurgeon (my husband also leaves for a 3 day business trip. SADNESS!!!)
• Wednesday November 14th - The long awaited EMG on my muscles with neurology
• Wednesday November 21st - I meet with the head of neurology in hopes he has some new ideas

Did you catch that I also work? And apparently I'm supposed to do that AND all these appointments every... single... week... Can you read my frustration between the lines?

Honestly I wanted to quit after the EMG and be done with neurology. But my husband made a very good point. He said "This isn't a wrong order at Carl's Jr that you just shrug and take anyway. It's a major health problem and we need to do everything we can to get to the bottom of it." He's totally right (of course.) I'm just exhausted with all this and I don't know how long I'm supposed to keep on going with these endless tests and appointments? 

When you struggle with chronic illness, any illness, it's impossible not to have it just take over your life. My life has changed completely from what is was even just 9 months ago. I have to constantly gage my energy, spoons and ability and that alone is exhausting. Add my job and then, you know, important relationships and I'm spread very thin. As Bilbo Baggins said in the Fellowship of the Rings "I'm tired Gandalf, like butter scraped over too much bread." Word Bilbo. All the feels!