This is Hard!

 Here's how things stand on me trying to change my eating habits for the better.

1. This shit is REALLY hard!
2. I apparently don't eat enough protein
3. If I ate as much protein as I "should" I would never poop again
4. I'm still eating too large of a dinner
5. I hate thinking about this as much as I am
6. I'm glad I'm tracking with an app because how I think I eat and how I really eat are so far apart you could steer a cattle drive through it (Mmmm... running burgers...)

Here's some of the evidence that my eating isn't consistent even though I think that it is. These are screen grabs from My Fitness Pal, the app that I'm using (no affiliation). 

See! What the hell!? I knew that dinner was my largest meal (typically), but come on!

Ok... so I also have the awareness to know that it has only been a week and that most people suck when trying something new. Apparently eating like this is a skill and like any skill it will take a lot of time and practice to master this.

Now if you'll excuse me I must take a laxative and eat a boiled egg.

Scary morning choke

I was writing a long post about ways to take care of my body when I realized what I really wanted to talk about what how I scared the shit out of myself this morning.

Let me back up...

I pride myself in being able to swallow a lot of pills at once. It's stupid. I'm not into self deprecation typically, but come on. That's a stupid thing to be proud of. So I don't do it at night when my muscles are a bit weaker, but first thing in the morning is usually fine. Except for this morning. I popped all eleven pills of varying sizes into my mouth along with a lot of water. ELEVEN pills!

Well, the next thing I know one of the smaller buggers is lodged firmly in my windpipe. I feel the horrible familiar feeling and a wash of fear and panic comes over me. Lucky for me everything else went down the right way. I immediately lean over my bed and give a strong cough. It didn't come right out, instead disintegrating enough to go up my nose and out a little bit, but I could still feel some in my wind pipe. 

I think it was an Aleve pain pill because it burned like a mo-fo all through my nose and down. As soon as I'd cleared what I could out I knew I had to stop the burning. I poured myself a big glass of unsweetened soymilk and added about a tablespoon of honey to it. It felt lovely going down my burning mouth and in the back of my throat.

Next I sat naked in my hot shower on my lovely shower stool and coughed up as much as I could. I also vacillated between self flagellation about taking so many pills at once and being kind and loving to myself about how scary an experience it was.

With fear comes change...

I've resolved to take my pills 1-2 at a time like a normal human earthling should. I also want to take them in the same room as another person when I can. It was scary to know I could have choked to death in the bedroom without anyone in my house even knowing. It was a bit of a wakeup call to take my condition more seriously. With each cough in the shower I could feel my lungs getting more and more fatigued. 

I also had a lot of gratitude that I didn't die. Life is so fragile and it only takes one mistake to end it all. I've had many moments like that to be grateful for. It can be easy to see the hardships and miss sight of the blessings. I feel blessed today that I didn't die.

Priority Parking for Pablo!

Today is a big day. My first ever disabled parking plates came for Pablo. It was exactly in May 2018 when I first got my temporary parking permit... so why am I happy about this?

What's most exciting about having a "blue plate special" (as I now think of it) is I don't have to remember that fricken badge! No more taking it off and on, switching cars, forgetting it in the wrong car (always horrible). Nope. Now it's just goooooo!!! Which is the whole point of Pablo anyway. 

But it is interesting how quickly emotions change. My husband and I were just talking about this the other day. How we both remember what a big deal it was when I decided I needed a walker, now here we are with a wheelchair van. The same is true for the parking badges. I remember it being a really big deal to talk to my doctor about it the first time, now here I am with a "DP" (disabled plate). 

I'm very happy that things don't remain a "big deal" for very long. That we become more fearless and just move on with the joy of living instead of freaking out over small things like mobility aides and "blue badges" (as my mother calls them). Anything to help me live a big, full life is wonderful and very welcome!

January 2020 Update

It has been a while since I checked in as far as how I'm feeling. How I'm actually doing symptom wise. What I'm trying medication wise and how things are going. So (insert drum roll please - and maybe a didgeridoo just for fun) here's a January 2020 update!

Here's the meds I'm currently taking and why

Prescription Meds

• LevoTHYROxine 125 mcg AM (taking for my hypothyroidism. I've had that for 17 years.)
• Lyrica 75 mg BID AM&PM (taking that for my stocking glove peripheral neuropathy. I've had that for 5 years since treatment for the Latent TB. Likely caused by the treatment. It keeps me from feeling like I'm being eaten alive by fire ants.)
• Cymbalta 60 mg PM (taking for joint and muscle pain. Also it helps for depression. I recently tried to wean off and was rewarded with severe pain. It's a must take.)
• Baclofen 20 mg Three times a day(TID) AM – 12 – PM (a magical pill that helps with my muscle cramps and spasms. This is a muscle relaxer commonly given to people with MS. I found it on my own after researching treatments for muscle cramps and spasms after my neurologist told me my only option was CBD. Hmmmm. Nope. The Baclofen is wonderful.)
• Topiramate 25mg BID AM&PM (This is "Topamax" that I just started for "migraines." Both my new neurologist and an ENT Dr told me I have migraines. This was suggested. It's an anti-seizure med but is supposed to work for migraines. We'll see. So for it has a lot of side effects.)

“Mito Cocktail” for Mitochondrial Myopathy

• COQ10 Enzyme 1,500 mg total daily (300mg 5x a day)
• L-Arginine 500mg daily
• Vit. D 2,000IU AM
• B-2 400mg AM
• Magnesium 360mg AM – 500mg PM
• Feverfew 100mg AM
• Wild Alaskan Fish Oil 1,400mg BID AM-PM

(The first two are amazingly helpful. I'm honestly not sure about the rest.)These are all recommended for anyone with any kind of mitochondrial issue. It's the first line of defense and often the ONLY "cure" for mitochondrial disease of any kind.
-gulp-

PRN - Take as needed

• Albuterol Inhaler PRN (apx 1x daily)(I take for asthma. I've had increasing problems with breathing last year)
• Acetaminophen 500mg +2 PRN (apx 2x per week) (I take this for pain. It works better for me than Ibuprophen) 

Yes! All those drugs are really helpful. Well, almost all of them. But what makes a world of difference for me is rest and sleep. If I get enough of it I can function ok... usually... till around noon and then I start to get tired. 

By 3pm I REALLY need a nap. Then I nap from 3 or 3:30 till 5:30 or 6. That's what my body really needs. If that doesn't happen I feel super punch drunk all day.

I like to be in bed no later than 9pm. Yup. That's WITH a giant nap. Then I sleep from around 10 till 9AM. My sleep is usually pretty interrupted with having to pee a lot and drink a lot. Even with a cool mist humidifier right by my face I have dry mouth pretty bad at night. If I'm at all sick that gets worse times a thousand for some reason. 

I stopped shaving my legs and arm pits.

Here are some recent changes I've made to make my life easier and save spoons.

I'm a pretty fuzzy chick by nature. My family didn't give me the nickname "Little Bear" for nothing. And chasing my leg and armpit hair multiple times a week was fricken exhausting. I tried everything. Regular razors. Sensitive razors. Shaving cream. Razors with shaving cream built right in. Electric razors you could take right in the shower with you (so I could use them on my shower stool). 

But hey! Being six feet tall with legs to the sky (as my pictures can attest to) that still took forever and literally all my spoons for the day. I threw in the towel at the beginning of the year. And you know what? I actually don't have as much leg hair anymore as I though. I think after so many years of shaving many of my follicles have given up the ghost.

No more coloring.

I'm also going back to my natural hair color. 

Although the henna was fun and I did have one last dance with the box dye devil... none of it is ME. It all takes time, money (something I'll get to in a minute) and is just a cultural construct of beauty that I really don't need in my life. Again, it also takes spoons that I'd rather spend on other things like time with my family, art, writing, etc.

Sticking to my budget

We have a family budget and now that we bought Pablo it's VERRRRRRRRRYYYYYYYYYYY important that I stick to it. Like 100%. As in no more buying myself a little shiny bauble. But come on... it was my birthday and they're natural sapphires, miner cut set it platinum, real vintage from England... how could I resist!?!? Well... obviously I couldn't. But that's it! Last hurrah. I'll be good now honey, I promise.

Ok, back to symptoms.

They're the same really. I'm up to the full dose on the Topamax after two weeks which is 25mg 2x a day. I feel even dizzier, more tired and out of it than before. I'm hoping that's temporary. I'm willing to give it a month because trying to be as healthy as possible is my full time job.

Even though I meet almost every criteria for a Vestibular Migraine I'm not completely convinced that's what's going on with me (despite two wonderful professionals telling me it is). Why? Because I have these symptoms all of the time. They don't "come and go" or "trigger". They only get worse and very rarely get better. 

What makes them worse is physical exertion or a major visual trigger like flashing lights or staring at contrasting vertical blinds for more than a few seconds. Rest does make it a little better, but it is never, ever "gone". 

This feeling of dizziness, foggy headedness, constant exhaustion, forgetfulness and chronic pain is why I was no longer able to work. It had nothing to do with my lack of mobility. I can always work around that with my job. But not being able to track in a conversation or having my vision blur out or suddenly being exhausted, that I can't just "work around". That was a deal breaker.

So that's where I am. I very rarely drive and if I do it's super short distances. My mood is ok. I have bouts of feeling in limbo still because my permanent disability isn't secured yet. But I am on temporary disability for 7 more months and my student loan dismissal based on disability was approved, so that's a very big deal. I do feel I'm making some progress in my life as Pablo shows. He's like my personal boat taking me off into my new future and I appreciate that a lot. 

I appreciate my family, my medical team, my good health care and insurance, my puppy, my home, my wonderful healthy food, my plants that make me smile when I see them, my delicious coffee, the lovely town I live in. I am a very lucky woman in so many ways. 

My husband is the love of my life and my best friend. I'm so lucky to wake up with him every day. So I like to notice what I have instead of what I don't and what I have is a LOT!

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. 

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. 

Inner Pixie

One Month Later

I am exactly one month into a three month "temporary break" from work (SSI). One month ago I had my last day in my beautiful office. One month later this "break" does NOT feel temporary.

I'm slowly coming to terms that my condition (currently just called "Myopathy") is progressive and degenerative. New symptoms still crop up from time to time and none of them leave once they arrive. They may get stronger or weaker, but once here they don't just set up camp, they build a condo and invite friends.

Not very long ago I could push myself to walk around our block with my dog. If I were to do that today not only would it take every spoon I have, but I think I'd fall over. The dizziness is a bit better, but I'm still very foggy headed, especially once I get tired. And that happens all the time. 

In short, I'm unable to work.

All the moods of me.

This Sunday I have another brain MRI. And on the 22nd I have a follow up with my primary care doctor who I trust completely. At that appointment I'm going to talk with him about extending my disability leave. There's no way I can go back to work as I am.

My hope for something or someone to "fix me" is waning and I feel a pull to just do what I can every day. What I have is obviously still a mystery to all medical professionals, though they've been able to rule out quite a bit. To me it just feels like everything my body went through during the TB and brain tumor left me with something "turned on" that never should have been. Or not. Who knows? All I know is I can do less this week than I could the week before and so on and so on.

I also think I need to make some small modifications to my house while I'm still able to be so mobile. Planning ahead is never a bad thing. 

Plan KA Days 2&3

Plan Kick Ass is going really well. Today I condensed my plan to these 10 steps and put them on my chalkboard in my room as a reminder:

I've been enjoying a simple egg, gluten free toast, herb goat cheese (with fresh herbs) and tomato for breakfast. This morning I had it with two eggs on the side.

Free range, organic, humane, pasture eggs in a tiny bit of avocado oil.

Delicious!

I made it into a breakfast sandwich yesterday with some lavender sea salt on top.

This morning's variation.

We had friends over last night and put out a healthy spread. I indulged in two Ginger Ales (but no booze) and about two tablespoons of "pub cheese" (that I did not buy, but have a hard time saying no to!) Oh yeah, and I put some brown sugar on my strawberries. Other than that it was all very healthy and actually Vegan. It was also my dinner. 

Guest spread

Also a guest appearance by my Sweetie!

So the food choices are going really well. We went to the movies with a friend today and I said "GET THEE BACK SATAN" to movie popcorn and soda. Just had my water and a few raw almonds. Go me! After we went to Chipotle for lunch where I had a salad with pinto beans, grilled veg and corn salsa. No soda and a few chips. No meat, no cheese. No queso dip. GO ME!!!!

You GO GIRL!

I've been pushing myself to walk a lot more. The stretching feels really good in the morning and my husband has been giving me amazing rubs that are also very helpful for my muscles. I'm trying to push myself, but also listen to my body (Rules 1 and 2.)

Tomorrow I'm going to have a morning push and do some gardening. Then relax the rest of the day and get ready for my three day work week. Wish me luck!

Life Hacks

Today I tried out some helping hand hacks that I've been reading about. I stopped by our local "dollar store" and picked up these small rubber bands and foam curlers to turn into grip aides.

I removed all the plastic and bagged them up.

Some of the blue foam I cut smaller and put in my purse. The pink ones are already a good length. I thought it would be good to have on-hand in case restaurant silverware is small and sharp (already something I've encountered.) Now they're all bagged up and ready to use.

Curious what I'm going to do with those tiny rubber bands?

I read about putting them on lids that are harder to open (like nail polish bottles.)

It really is a helpful hack! It makes them much easier to open. It was a bit tricky to get them on though. I think a lot of people may need someone to do this for them. I found it so helpful that I decided to put it on my most used "slick" cosmetics.

You can see I used quite a few on each. 

As for the foam rollers I put one on my favorite pen and toothbrush. The holes were too small for my toothbrush, so I cut it down the middle and slipped it on. It didn't work very well. I think for fatter handles it would be better to buy special arthritis grips.

Everything on rollers is WONDERFUL!

Another modification I've made is getting as many things as I can on rollers. Pushing and pulling is much easier than lifting and carrying. It's also easier on my hands. I adore my wheeling clothing hampers. I realized after my swim at the gym that a regular gym bag no longer does it for me. It's way too heavy when it's full of wet things. Enter the $29 roller bag.

Making modifications, changes and hacks has been hard actually. I keep feeling like "I don't need any of this YET!" But I noticed when I do use a tool or change things it feels so much better... than I have a little "oh" moment. I remind myself that I don't have to struggle unnecessarily. I can make changes that make things easier. 

Growing Patience

As I said before, I used to garden a lot. I have a big garden where my front yard used to be and in the past have enjoyed growing lots of food for my family to enjoy year-round. I could spend about 2 hours in the garden working before getting pretty tired. That was about my limit. Right now my limit is about 15 minutes. That's a huge change. And to avoid the sun I'm typically out there at twilight.

Despite my husbands best efforts to keep the weeds under control it has quickly gone from "charming wild garden" to "out of control wilderness." Although I do get frustrated that I can't be out there as much as I want (even 2 hours was a lot less than I wanted.) It's also forcing me to prioritize and have patience.

One big change I'm doing this year is I'm not hand watering anymore. Believe it or not I used to get out there every other day with my hose and hand water every plant. Yeah... that's not going to happen right now. I also don't have the spoons or money to put in a drip system. So I went old school. Enter the sprinkler!

Even now when I see a sprinkler going I want to jump through it like a 7 year old again. There's just something summery and joyful about rays of water shooting up at high as your roof and raining down upon eager plants.

My fella installed it for me last night while I got my 15 minute "high priority" gardening done. That was the first time in a long while that being in the garden didn't make me want to cry because of what I "couldn't do." Instead I felt glad that I finally got to tackle the few things that I could do. And that hopefully what's already there won't die from a lack of watering.

Don't you just want to run through that?

Watching the water do its magic on my thirsty plants from my chair I realized that along with the sunflowers, my patience is also growing. I'm sure I'll still have plenty of moments of frustration, but hopefully they will come less often.