More Testing

Spring officially begins this Wednesday, but it has been in my neighborhood for a few weeks now. Last week I took a few minutes off at work to roll around our complex and soak in some sunshine. Of course I couldn't resist picking this lovely sweet smelling dandelion for my hair. I forgot it was there and by the end of the day it looked like a dead bug crawling above my ear. Hah!

Friday I had three doctors appointment. One was a pre-op for my thigh muscle biopsy and the other two were for my heart. I was having some scary issues crop up, but since increasing my Q10 dose they had gone away. My PCP made me go through with the testing anyway.

In spite of (or because of) my busy day I found the time to get my nails done. It has been a nice little treat and a good way to spoil my body. Keeping body positive is important when struggling with a chronic illness, at least for me.

I told the echocardiogram tech that I was nervous about the scan since the last time I had any major testing they found a brain tumor. She assured me that she wouldn't find a brain tumor.

Apparently I have a big tough heart. I could have told them that!
In all seriousness, I won't know what this means till they get the results of the 24hr halter test back. And the cherry on top was I was allergic to the adhesive pads they put the EKG monitors on with. Hello raw skin and rash! -sigh- 

But nothing lifts my spirit quicker than a little snuggle time with my 12yo Whipped Terrier mix "Sweetie."

With my increased strength and stamina I've also been out gardening again with my husband. It feels so fantastic to be productive, instead of just watching him do everything.

I also decided to buy myself a cane. It was the one piece of mobility equipment I didn't have. I had been using my Nordic Poles as a walking stick and they're great in the garden or off-roading. But for just help with balance and stamina in say a store or going down the street they didn't have the stability that a cane offers. They're also a bit hard on my hands.

This cane is adjustable with a big, squishy handle. And doesn't it look like a mermaid tail? I'm hoping I can use her at work and short distances, Meg my rollator for medium and Ariel my electric chair for far distances and out all day situations. Time will tell!

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.

CoQ10 to the rescue!

It has been quite a while since I've had the time and energy for a blog post. Fatigue is such a horrible part of all chronic illness and it has been a serious struggle to work a full 40hrs a week, even with loving my job so much. There were many days where I questioned my choices and let fear take over my exhausted body telling me I should just work less... or not at all. But just when I felt completely out of hope I finally have something working. All the amino acids and the CoQ10 I've been taking have started to work and I feel more energetic.

(Me and Ariel enjoying some art with friends.)

For the last 2 weeks I've been waking up with much more energy in the morning and feeling far less wrung out at the end of the day. I've been able to even help my husband cook dinner and keep up on some house chores that were a massive struggle for me before. My neurologist increased my dose of CoQ10 because for my condition it can really help. As soon as we did that I really noticed an even bigger change.

My legs felt tingly, but not in a bad way. It honestly felt like all my muscle cells were trying to re-start up some energy for me. It's still very hard for me to walk for very far and standing is especially hard, but it's an improvement and I'm thrilled!

If the number 1 stood for me hardly being able to get out of bed and a 10 is the most energetic I've felt in all my life (we're talking fatigue, not muscle strength) then I'd say I went from a 3 to an 8 in the last two weeks. If a 1 stood for me not being able to move at all and a 10 is the way I used to be then I'd say I've gone from a 3 to a 4 in muscle strength. I'm hoping with some time that could improve. 

(Cheers from work! Keeping a smile on my face and love in my heart no matter what.)

Considering it took two months for me to feel any affect I'm thinking I'll just have to be patient with the dose increase. I'm still using my chair at work and for things like shopping. I can still get around my little house without an aide and with just my modifications in place. I used Meg at a smaller store this weekend and although it was a real challenge I managed it. I feel hopeful and excited for the first time in a very long time.

I am all signed up and approved for my thigh muscle biopsy on March 25th. I have to take a day off work and have it done at the hospital, which is annoying. Hopefully it will give us some more answers.

(Dory at work with her amazing sheep skin cover that was meant for a car.)

Some NON-ILLNESS related things I've been doing (other than work) has been getting my nails done, doing puzzles with my husband, watching Sabrina the Teenage Witch (on Netflix) and Clash of the Collectables (a relaxing antique show.) Of course I'm always spending time with my puppies and oh yeah! Even making time for friends too. 

(I call them my Disney Villain nails.) 

We'll see what this month will bring but I feel happy that we've finally landed on something to help my Metabolic Myopathy.

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. 

First Vacation With a Wheelchair

I recently took my first vacation as a wheelchair user. I brought my travel chair Ariel with us and she performed beautifully. We flew United from San Francisco to Oahu with my company. It was a big “thank you” business trip for all their employees. They knew in advance I’d be bringing a wheelchair. United was able to check my chair right at the entry to the plane after the big “gangplank” walk to get to it. There are 2 tags they required containing information on the chair. I also made my own tag after doing some internet research on it.

My personal tag contained:

• A picture of me.
• A simple statement of “Thank you for taking good care of my wheelchair!”
• “In Case of Emergency” (ICE) information to reach us.
• Information about my chair like weight, battery type, make and model, color.

 

I got the idea online from a mom who made a tag like this for her son’s wheelchair when they’d travel. She said the rough handling of her son’s chair and the damage hugely decreased after putting the tag on. BRILLIANT!

All the United staff were super impressed that I planned ahead and had the chair info all ready like that. I did forget to take a picture of it before my husband put it in the travel case and handed it off to baggage. I read you should do that in case it’s damaged.

I will say I’m lucky that I can walk down the isles ok because “pre-boarding” really wasn’t super useful. There were a LOT of people in my way, mostly people traveling with kids who seemed to think they had the exact same pre-board rights as people with disabilities. (They don’t by the way. It’s supposed to go 1-disabilities 2-people with small children 3-first class 4-everyone else.) The airline was in such a rush to keep on-time that it was a bit of a mad dash. Coming home was better, so I’m thinking it could be a San Francisco airport thing?

The TSA check in San Francisco was also strange. I had no idea what to do as a wheelchair user now. I expected there to be some kind of “disabilities” check line, but there wasn’t. I had to maneuver through the general long line. Once it was my turn they pulled me over to the side and gave me a cane to lean on while conducting a thorough pat down on me. The female TSA agent was super sweet and always told me where she was going to touch me before she did. I appreciated that. Then she checked my chair and swabbed it down (they do this with all electronic equipment.) It took about 5 minutes. She told me since I’m able to walk short distances and stand for a bit that next time I could let the TSA agent know that and I wouldn’t need a pat down.

Coming home I didn’t have to go through the general TSA line. Instead they had a separate line for people with disabilities, just like I expected back home! I felt more relaxed and appreciated the straight, slow moving line to navigate through. I let the agent know I can stand through the scanner when it got to be my turn. I turned off my chair and unlocked my breaks so she could push it to the other side for me while I went through the scanner. This was MUCH easier for me and I only had to walk maybe 5 steps? Then I sat in my chair while she completed the chair check. This was a simpler, more relaxing experience. Again, everyone was very nice.

I’m not sure what people do who can’t get up out of their chair at all. I’m guessing maybe get a pat down while sitting? But that sounds very uncomfortable and hard to go through.

The flight was… a flight. Nothing gluten free so good thing I brought my own food and water. Always get your own water once you’re through TSA security! You can just bring a travel cup and refill it at a drinking fountain for free. 

When we arrived I had to use an airport chair and porter as my wheelchair was down in luggage claim, even though they said it would be at the gate. Weird. Coming home it was right as we got off the plane like we had expected the first time.

During our 5 day vacation I learned that big cities and towns will be much more wheelchair accessible than smaller, quaint areas. Makes sense, but as a previously bipedal mover I had never thought about it much. I also like smaller towns better than big cities. I felt frustrated a few times when places we wanted to stop at were obviously not accessible. But I also learned that some places have portable ramps if you just ask.

The larger tourist stops were fully accessible and welcoming. When we went to a popular snorkel destination they knew how to get my chair onto the shuttle and clamp it down. I rode for free and my husband paid and small fee. They also had free beach wheelchairs that I personally think are a nightmare if you’re over 100lbs. My poor husband tried his best but finally I just got out and pushed it like a beach walker (which was useful.)

Before we left for our vacation my husband bought me a pair of super tech collapsible hiking poles that weigh nothing, complete with “beach heads” for navigating sand. They were perfect for helping me walk short distances and broke down to fit in a purse or backpack.

(My amazing beach poles!)

The Luau we went to also knew in advance that I use a chair. They had a gas powered golf cart and drove me wherever the rest of the group was going.

(Ready for adventure!)

I think planning your trip around making sure you’re going to a place with friendly people who are happy to accommodate you is very important. Hawaii was perfect in that regard. Every single person was so friendly and beautiful. 

Many times through the trip I thought “how do people traveling alone in a chair do this!?” It seemed impossible to me. Or even people with zero mobility. That would have been an incredible challenge.

Throughout our trip I got compliments on my chair. Even the shuttle driver who picked us up in the morning said “Why did the instructions say there was a wheelchair?” Not knowing he had just put it in the trunk. Hahah!

The hardest part was when there was a lack of accommodation. Like the elevators at our hotel were much too small. They’d pack in with people all sticking their butts in my face or knocking me with beach bags. It was too small to turn around in, so I had to exit backwards every time. I hated it. Twice the lock on the back of my chair popped open and I was painfully jolted as my husband was trying to helpfully maneuver me through a tight spot. It hurt and I snipped when I shouldn’t have. I know it was a whole, new, unknown, stressful experience for him. We’ll both get better at it the more we do it.

All in all we had a wonderful time. Snorkeling was by far my favorite part. I really am part mermaid!

Plans for 2019

I tend to keep a journal off and on. It's not a traditional "Dear Diary' type. More of doodles, lists, feelings, thoughts and plans. I like to go back and re-read them at times to see how much I've grown. This entry from 2017 really stood out to me and I found it share worthy.

I was still in graduate school at the time. This is a good snapshot of what chronic illness feels like. I wouldn't wish it on my worst enemy.

Here are the "goals" that I have been setting for myself through the years. I notice I didn't do it last year. I think that's because I had just graduated and felt I had enough to focus on with my job hunt.

More here about "Beginners Mind" if you're curious. 

"UPR" is a psychological term that means Unconditional Positive Regard.

On January 2018 I deleted my Facebook account. 

It took about an hour and a lot of Googling to figure out how to do it. Facebook is like that crazy ex who doesn't want you to go, peering through your window, hoping you'll change your mind. I can say with all honesty it was the best thing I could have done for my mental health. I was very much addicted to it (though less than most people I know.) I encourage everyone to engage in as little social networking as possible and spend that time deeply engaging with people in the real world.

Sick on top of Sick

We've had some hot sick-on-sick action going down at our house. First my husband came down with the flu. "I hurt all over" my husband bemoaned to me while I shot him incredulous looks. "Welcome to my world" is my go to retort at times like this. Of course I don't want my husband to be sick, but the two days that only HE was sick gave me some false hope that maybe I could dodge it this time? Maybe only he'd be sick? Nope.

"But tell us! What's it like being sick when you already have a chronic illness?" I'm sure that's what you're wondering? On the edge of your seat to hear? Well, let me share a little. I suddenly gain the super power to be able to sleep ALL day and ALL night! Isn't that amazing? I do nothing, but am also hungry all the time. But I'm not just hungry, I'm starving AND nothing sounds good to eat. Are we having fun yet? "Tell us more!" You may be demanding. Very well. My skin is so sensitive and every cell in pain that anything I put on hurts. It doesn't matter if it's the softest pajama or fuzzy blanket, it hurts. I want a nice warm shower, but also don't want the water pressure on my skin. In short, I transform from a mature adult woman to a cranky, fussy infant who can not be soothed. What fun!

My body already hurts all the time. Every second of every day I have pain. It's just how severe that pain is and to what degree it distracts/consumes me that changes. When I'm sick, it consumes me. I hate it. In short (to quote my favorite meme because it's so true) "Everything hurts and I'm dying!"