I Keep Trying!

Throughout my multiple challenges and conditions I've (almost) always remained hopeful. I'm hopeful that whatever newest, latest thing I'm trying will help ease at least some of my symptoms. Sometimes it does, most of the time it doesn't. Here's some of the million things I've tried, why I tried it and what the outcome was.

Keeping Hope Alive

• CoQ10 1,500mg Daily - This was the first thing I ever took that helped with my muscle myopathy. I've done a lot of tweaking to find the right dose that helped my fatigue and strength. This is the sweet spot for me. I take one 300mg pill 5 times a day through the whole day. It did take about 3 months to notice any difference.
• L-Arginine 500mg - Part of the "mito cocktail" along with CoQ10, this is commonly recommended for people with Mitochondrial Myopathy. At first this didn't do a thing for me. But a year later I tried it again and WHAM! It really helps with my dizziness and fatigue. I take it once in the morning. More than that gave me insomnia. I noticed the helpful effects immediately when I began taking it again a month ago.
• Carnitine - We called it "carnitor" in our house as a joke. It didn't help and it upset my stomach, but it can help others with a mito disease. 
• L-Citrulline 750mg - Something new I'm trying. I read in a scientific study that it was more effective than Arginine for some people with myopathy. I'm not noticing a difference yet but I'll try the whole big bottle.

• PT - Physical therapy did squat for me. In fact it was harmful and pushed me too hard. I tried it for joint and muscle pain and to try and increase my range of motion. What DID help instead was doing gentle stretching on my own, especially in the morning when I wake up.
• SLP - Speech therapy was helpful, but my symptoms had improved a bit from the Arginine by the time I got in. I have a Barium Swallow Test coming up in February and depending on those results I may go back. She also gave me some cognitive exercises to do that I found useful.
• Magnesium - I find it useful for stiff, painful muscles. I take it daily and if really bad I try and take an Epsom Salt Bath. 
• Ibuprophen 800mg - Prescribed for inflammation I get little to no relief from it so I don't take it.
• Acetaminophen 500mg - I take 2 (1,000 mg) if my muscle and joint pain gets too bad. This is very effective for me. For night pain I take Acetaminophen PM about once a month. 

• Pushing my muscles with a lot of activity - Didn't help. Did hurt. Can cause the serious medical condition called Rhabdomyolysis (and yes, I've given myself this from pushing too hard). I tried it to see if I could "push through the weakness" because I read that works for some people. Not for me though! 
• Not getting enough activity - Resting to much from fear of muscle destruction just caused an increase in my cramps and spasms (not to mention weight).
• Baclofen - This has been a life saver and greatly reduced my cramps and spasms. It's a muscle relaxer that I found on my own by doing research. It's commonly given to people with MS. Luckily my doctor agreed to let me try it. It hugely improved my quality of life!
• Lyrica - I used to wake up crying from pain at night caused by my peripheral neuropathy. I thought my only hope was Gabapentin (which DID NOT WORK and I had a bad reaction to). Then my doctor tried me on Lyrica and POOF! My neuropathic pain was gone.
• Cymbalta - I've been on this for over a year for muscle and joint pain. A side benefit is it also helps with depression. I call that a win-win-win. I did have to adjust to it. It made me very foggy headed at first. But I'm very glad I "toughed it out". My pain is unbearable without it, just like with the Lyrica. 

• Plaqenil - I was given this for rheumatoid arthritis symptoms (that I now suspect might just have been the mito myopathy in disguise). It's an autoimmune suppressor that may or may not have been one of the contributing factors of my muscle weakness suddenly coming on so severely. Needless to say, it didn't work for me. 
• Naps - It always feels like a battery recharge. My cognitive functioning and muscles typically both improve with rest. I try and get a nap in every day. 
• Blue Light Blocking Glasses - Recommended by both my new neurologist and ENT for migraines (which I shockingly, apparently have). You can get them cheap online and they have made a big difference. They reduce my headache intensity and frequency and reduce my dizziness. 
• Hepa Air Filters - I credit these to my overall pretty good health while working. I would be in a small room with a lot of people who sometimes were sick. I usually would catch things at home and not at work. Now I have one at home too!

My current plan is to see if the Migrelief was helpful or not. I try and test things when I run out of them. I've also only been taking the L-Citrulline for a few weeks now so I'm giving that a chance. No difference yet. I read last night about how BCAA (an amino acid compound) taken orally can help with muscle strength, endurance, pain and recovery. I ordered this one not mixed with other crap to try in a morning smoothie in a few weeks. 

On this journey I have learned that I have to be the expert in my health. I know my symptoms better than anyone. I also need to clearly communicate with my health team about what I need and how they can help me. I need to trust myself, but also my doctors. If something helps I keep it. If it doesn't I move on to the next thing. I haven't run out of stuff to try yet and I don't think I will anytime soon. Though swimming with dolphins is something I'd definitely skip. 

I am not affiliated with any product linked, nor did I receive any kick back for endorsement.

Painsomnia

Painsomnia is when you're in too much pain to sleep. I've had a nasty head cold lately (and a beauty of a cold sore) and when I'm sick my body pain level usually skyrockets. The last few nights I've been in bed trying everything I can to get to sleep. Night time cold medicine, Ibuprofen PM... nothing seems to help.

When my pain gets this bad I usually just try and distract myself into a state of ultra sleepiness by messing around on my iPhone. Pinterest is my go-to. I found myself doing some last minute Christmas shopping last night. "Design Home" is my favorite app. I've played it for years. I find it relaxing and a fun way to unwind. 

If I'm getting busy brain or feeling worried looking at animal "pins" or humor is helpful. Baby animals cure everything. 

My sweet girl is also helpful. 

I can't force sleep. She will come when she's ready. Bottom line is I'm lucky to not have to get up and go to work on only a few hours sleep. It really screws me up. If I'm up late with painsomnia I feel super dizzy and foggy headed the next day. I will also likely have a migraine. 

I'm lucky not to have this happen every night, but it does seem to happen back to back nights when it does come up. Being sick with a bug is almost always a guarantee that it will happen. It also seriously affects my mood. Bah Humbug!

Disability 2 months in

I've been off work for the last two months due to my disability. During that time I think I've felt every emotion humanly possible. My mother ended up moving back to my town from England (0.8 miles away from me) the week before I had to stop working. It wasn't anything planned. It just shockingly worked out that way. She has been a welcome and wonderful distraction, especially since I stopped driving the same time I stopped working. 

This also means I haven't had much time alone with my thoughts and feelings as any time I'm alone is 100% filled with being disabled. Going to or scheduling doctors appointments, ordering or picking up medications and supplements. Researching my muscle disease. Reading genetic testing results. It's exhausting.

Then of course there's actually applying for SSDI (permanent disability) and trying to rest as much as I can. At least I've mastered the "bed head".

Werk it gurl!

Unsurprisingly I was instantly rejected for disability. After spending the last 10 years in school and working for free it was expected. Their algorithm hated me the second I submitted it. No... seriously. The literal second I submitted it was denied. So now step two is to appeal and try and find a lawyer. Nothing and I mean nothing about being disabled is easy.

I applied to have my student loans dismissed since I can't earn any income right now. The letter I got back in early November said I would hear back "in 30 days." Apparently they meant 30-120 days, which I found out after a phone call and not hearing back. This is holding up my wheelchair van. No way can I take on a huge debt like that till I know I won't have to pay my student loans.

But there are some good things happening too!

The supplements I'm taking for migraines have finally started to help. I still get headaches, but less frequent and less painful. I'm also feeling less dizzy. Still foggy headed so I'm not driving but not like I'm going to spend my life in bed either (which was where I was headed around Thanksgiving.) I attribute that to starting L-Arginine back up again after a crappy medical appointment. 

I also recently purchased some L-Citrulline to try. I read this peer reviewed article about both L-Arginine and L-Citrulline being helpful for the symptoms I was experiencing. I'm also choking less and breathing easier.

And I finally got another patient advocate through my health center. She's been great about cracking skulls with my wheelchair company to get my modifications through. Hopefully soon I'll have the higher headrest and knee abductors that I've needed for Dory for a long time. Also hopefully soon I'll have a van to drive her more places.

Reading this it's easy to understand why I get so angry when people think I just lay around all day. Being an advocate for myself and just being ill is a full time job. 

I'm seeing my wonderful primary care doctor this Friday and we're going to extend my temporary leave (SSI). Then I'm taking a break from all things government till after Christmas and my birthday. 

Good Doctors and Not So Good

I've learned a lot from having a chronic illness. Specifically about the American medical system and those who work for it. I think I had some serious rose tinted glasses when it came to doctors. Overall I'd had good health and anything wrong with me had been very straightforward. Even my years of endometriosis. But when it comes to having something that there isn't a clear test for or that requires years of multiple people guessing at what's going on with you, then that's where things get more dicy.

Doctor's don't like the word "guess" even though that's what they do with me. I have a rare condition that they "think" they know something about even though all they're really doing is guessing. It's a "best guess" but still just a guess none the less. 

I've learned that some people really suck at bedside manners. Some doctors think I'm doing a "self fulfilling prophecy" and "not trying hard enough to be well" (real quotes.) Others think they know exactly what's wrong with me and respond in frustration when I continue to be sick. Some are fantastic in person and then never respond to my messages between my three month appointment wait times. Some say they're going to give me referrals for services they think will help and then don't, or do it a month+ later (typically after I message them repeatedly). 

All of this takes a ton of time and energy. I told my husband the other day that when people ask me what I do for a living I should just say "I'm sick" because it's seriously a full time job.

Because I'm a visual person I'll show you how most of my appointments start out:

And then it can go one of two ways.

Poorly...

Or

Well...

I've only walked out of an appointment once. And let me say that it took me a very long time to even comprehend that just leaving is an option. They are there for me and if they're not helping, or worse... I can always just get up and go. No need to waste my time or theirs.

In general my encounters have been very positive. Most doctors genuinely care and are trying their best to help me. Some even admit that they don't know much about my condition and are just trying their best to help my symptoms. I seriously appreciate that.

Wheelchair Van Shopping

Terrifying, daunting, uncomfortable, overwhelming... maybe those words begin to describe what it's like to shop for a wheelchair van. These are just a few reasons I suspect most wheelchair users choose to either not go out much, or to take public transportation. The other reason? COST! DAMN! I mean come on! The prices of these vans will take your breath away.

My husband and I began thinking about pulling the trigger on a wheelchair van this summer. We're fortunate enough to have actual options in the city we live in. Most people I think are stuck with a single dealer or buying private. I thought I educated myself and was prepared ahead of time from internet research. Nope. So let me break down my experience for you so far in the hopes that it might help you out in your search.

That's some serious "RBF" going on there!

Step 1: Find what kind of ramp you want.
Electric? Manual? In-Floor or out? There are many options here. I want an electric "Fold Out" which is not the same as "In Floor". The reason is because if the electric equipment has a malfunction (and we know how common that is) then you can still manually get your ramp up and down. You're not trapped in your chair till some magical help comes along.

Step 2: Will you ever be driving?
I've heard a lot of stories from people who thought they would drive, but then due to their progressive condition only drove for a year or two. It ended up not being worth the huge expense of making the drivers side accomidate their needs. Case in point. When we first started looking I was still driving. I was interested in a "Transfer Drivers Seat" meaning I could easily transfer from my chair to the drivers seat to drive. Well, I'm no longer driving and I don't need that expensive feature.

One of the many benefits of buying a van from a dealer vs private party is that as your needs change you can have your van modified. For example I don't need a transfer passenger seat yet, or a chair lock down in the front instead of a passenger seat. If that changes in the future I can have our van adjusted.

Step 3: What kind of van do you want?
This is called the "Chassi" in the wheelchair van world. Common makers are the usual. Honda, Toyota, Chrysler, Dodge. Each comes with their own pluses and minuses. I am very tall with long legs and an "ample bottom" so having a comfortable, roomy passenger seat is really important to me. Also due to my chronic pain, seat heaters are really a big plus. Because of these and a few other important features I'm hoping to buy a Chrysler Pacifica Touring-L Plus.

Step 4: What's your budget?
Wheelchair vans range wildly in price just like regular cars. Also like a regular car you get what you pay for (in my opinion.) The older the car, the more miles on it, the less expensive it will be. You will need to consider--The Chassi Price, Conversion Price, Equipment Cost (tie downs, modifications to your chair to be locked in, transfer seats, driving mechanisms...) and Warranty. Then of course there's taxes, documentation fee, license fee, smog, registration and every other nickel dime fee there is. 

Some Chassi brands will give you a small rebate. Usually around $1K and only if you're buying brand new. A super small drop in the bucket. In my state there are no programs to help you with the cost. It's considered a "non medical necessity". Though my dealer mentioned we might be able to deduct the cost of the conversion and equipment as a DME (durable medical equipment). We'll check with our accountant about that.

And some cars have lease options instead of buying. But I have found them to be too rich for my blood. However if money is no object and you just want to have the best you can buy it should be an option to consider.

I was happy to hear that there are programs where veterans can get a van almost completely covered (they should be able to get whatever they want for free if you ask me). And my dealer said "Victims of violent crime get a 30K payout to put toward the cost of a van". 

The van we're considering is a 2017 (two years old) with super low miles. "Out the door" it will cost $61,094.87 to purchase. Luckily we have excellent credit, but I was told that financing a van can be difficult as it isn't treated like a typical car purchase. You can also get financing for up to 10 years to make the monthly payments a little bit easier. For us those payments are still 4x our current monthly car payment so that's a huge, scary undertaking.

The next steps are to talk to our banker about it, sell my husbands car and pray that my student loan debt is forgiven due to permanent disability. I'm checking the status on that daily. Hopefully we can pull the trigger soon because it would really improve my quality of life to have "Dory" with me whenever I need her. 

What I'm Into Lately

Rather than go on about my symptoms right now (many) or how I'm feeling (shitty) I thought it would be fun to talk about things that I'm into right now. New things. Things that keep me going and fill me with joy.

1. Puzzles: My husband and I started doing this last December and have been going strong all year. I can manage it sitting and focusing on such a small thing is really doable for me. I can also do it as long or as short as I want.
2. Records: I bought myself a record player after wanting one all year. I still have zero records though. Hahah! But I really like the idea of listening to records instead of watching TV.
   
   
   
   My new record player - minus the record. 
3. Socks: Fun socks just make me smile. My recent acquisitions include Wonder Woman and Grover. I have a rainbow striped pair that I call "my happy socks" that never fail to cheer me up instantly.
4. Pajamas: All things soft and snuggly. I'm embracing my comfort needs with clothes that feel like blankets.
5. Blankets: Can't have enough of them. Seriously. Never enough soft blankets of all sizes and colors.
6. Wood Burning: I bought a simple wood burning kit to try. I thought I could make cool, cheap Christmas gifts with them. We'll see if I ever get enough spoons to be able to give it an actual try, but I'm hopeful!
   Funky!
7. Acrylic Painting: I used to paint a lot and was quite good at it. I have a painting in mind that I want to do and a great canvas. Now I just need the spoons.
8. Redecorating: Putting up Christmas decorations makes me very happy.
   
   
9. Family Pictures: I've been updating my family pictures. I have one wall of just myself, my husband and our son, then a hallway full of family photos. I enjoy keeping them up to date. They help me remember all the fun we have and the people who care about me.
   
   
   
   Play it grandpa!
10. Re-Arranging My House: This has been a big one lately. My bedroom was pretty sparse compared to the rest of my house, despite my spending a lot of time in it. I also had another room all set up for work and getting ready for work. Both were seriously depressing me. I turned my "work" room into more of a library and we've been fixing up our bedroom so that it's useful AND fun. Both of these things have been hugely helping me transition from working to being home. I need my environment to reflect my needs or I get very depressed.

Now I just need to save my fun money to get some records to play! I'm looking forward to it.

Pain

I hate that question that the nurse always asks at every doctors appointment. "Are you having any pain today? Where? On a scale of 1-10 how bad is it?"

Pain is subjective, personal and really hard to measure. I'm always in pain, everywhere. I can't remember a time in my life when my back didn't hurt. My best friend growing up knew this and would rub my back when I asked her to (the sign of a TRUE friend.)

A real friend has your back... Literally

I take Cymbalta 60mg every night for joint and muscle pain. It helps tremendously. I also take Lyrica twice daily for neuropathic pain. That also has been a life saver. Occasionally I'll take Acetaminophen if the pain gets too bad. Ibuprophen is supposed to help with inflammation, but I haven't found it to be useful for my pain. I'm not interested in taking anything else for pain management medically due to the risky side effects and dependence.

Pain has always been a part of my life but I'm not ruled by it. I find new symptoms much more disturbing and disruptive. Like the chronic dizziness, lack of stamina, weakness, etc... 

I long for the day when we can all just be scanned and have a report come out saying exactly what's wrong with us. Then a machine will pop out one pill that you take a day that will fix everything. I mean they did it in Star Trek! Why isn't that a thing yet!?