It's ok to struggle

This chronic illness life is such a roller coaster ride. Not just for me, but for my husband too. One moment I'll feel I've hit homeostasis and I can work with all these symptoms and challenges. Then the next something new will come along, or something will get worse and I'm tossed into a sea of frustration once again. 

A lot of the time I really do feel like two people. One healthy and able bodied and the other sick, chronically ill and immobile. More and more I feel that one healthy side of me literally dying. My husband jokingly tells me "Don't you die on me"! And I always promise to "do my best". But it does feel like a long slow death of the "healthy me".

Turning into a mermaid

To me the "healthy me" is the one who didn't need to nap every single day, who didn't have to think about the accessibility of a place before I went somewhere. Who didn't have to measure what I could do during the day in spoons (energy) and not do a lot of what I really want to because I just can't. The healthy me could eat whatever, go for a walk, hike, run, take a bath, have an orgasm and other things that I just can't do now. She's dying and it feels like a serious loss.

Sometimes that loss feels like my heart will break and I will drown in my disability. Some nights it feels like I'll just stop breathing or never be able to walk again. Sometimes I think of taking a lot of pills or drinking a lot of booze to just get the pain to stop for a little while. But I never make those choices.

Instead I choose continue to fight and swim against this tide pulling me down. I come up for air, and gasp before going down again. Sometimes I get hopeful at a doctors visit or with a new medication and I feel like I have some new floaties to help keep me above water. 

What really saves me and always has is knowing my husband is right there with me. Holding me up. Keeping my head above water so I can continue to struggle and try to learn to go along with my symptoms. Rest, recover, heal, eat well, pull back, reach out. All of these things help. But that doesn't mean they're easy. 

SHE also helps a lot. "My little nap buddy". Pulling back on work has also been useful. This week I also decided to apply for State Disability. Despite pulling back on my work week and working from home one day a week I don't want to come to a point where I wake up one day and just can't do it at all. I'm trying to be ahead of these symptoms for once and not go under the next time a big wave hits. 

Symptom Update

Time is going by quickly and I'm beginning to learn a lot about my body. What it can do (more than I thought) and what it can't. Where I can push myself a little bit and where I really can't (like naps are a MUST!)

I've learned that if I'm getting sick in any way, my body just shuts down. I need to talk to my PCP about the whole "muscles don't want to work my lungs" thing and see if there's anything that can help with that. It's a horrible feeling. Fortunately it's usually only there if I'm sick or getting sick. 

I've also learned that working three days a week is way more doable than four. I was seriously pushing myself nowhere good working four. Every day I don't work I nap mid-way through. That also helps me in a massive way. I wake up refreshed with energy levels restored. 

To recap on medical progress (or lack of.) 
My neurologist has retired and I wasn't assigned a new one. That's fine with me as I feel that train has gone as far as it's going to go. Every specialist in my network seems to only work on days that I work and I can't take time off every week now that I'm down to a three day work week. Unless magical mermaids decide to pay off all my student loans for me. That would be great. So no neurologist right now.

Opthomologist said I'm fine and don't need surgery. Didn't want it anyway so we're on the same page. Plus I didn't like her.

Appeal for full genome sequencing letter will go out soon. My husband wrote the perfect letter and I hope it will work. My Metabolic Myopathy Geneticist is holding tight. I'm hoping that will illuminate some mutation that will be helpful to know about.

September 2019 Current Symptoms:

• STILL can't have an orgasm (that really sucks)
• Muscles shake after short burst of high intensity use
• Break out in a sweat if I "do too much" muscle wise. The bummer is I don't yet know what that "too much" is and it also feels like a moving target.
• Loss of muscle strength and energy through the day
• Pain in feet unrelated to activity
• General body pain (worse now, but could be from going down on the Cymbalta)
• Ptosis of both eyelids, right's a little worse (stabilized)
• Occasional dry mouth (this seems to only happen if I'm getting sick or having an "episode")
• Occasional choking (including that time recently that it was almost serious!)
  
  What's BETTER since June:
• Muscle cramps, spasms and twitches are being controlled with my Baclofen 20mg
• Occasional headaches, constipation and urination delay is all much better. This could also be from the Baclofen? Would make sense given it's a muscle relaxer.
• Feel closer to being able to have an orgasm (Yay! Again, could be from the Baclofen)
  
  
  
  I'm overjoyed that there has been some improvement. Moment to moment my life is still very challenging. "What can I do? Am I sure I can do that? I feel tired but can't rest right now. Push through girl! Pain. Pain. Pain. Stretch. Rest. Eat good foods. I miss Taco Bell. Stop doing things that make you feel worse! You need to rest. Don't forget to play. Time for work."
  
  And the next person who tells me to "Get well soon" might get a throat punch. 

Body Scare

So I got to have my first ambulance ride two nights ago. That's a check off the "bucket list of chronic illness" that I was hoping to avoid. 

Call the wambulance!

To sum up what happened was that my muscles didn't want to breathe (or forgot how?), I was incredibly dizzy, had a horrible headache right in the front of my forehead and my muscles (especially my hands) got even weaker. 

I woke up my husband around 1:30AM and tried to calmly let him know what was going on in my body this time and ask him to call an ambulance. 

Although it was my first ride in an ambulance, THIS is a familiar sight!

They ran a lot of tests, gave me some Tramadol and Benadryl through my IV and called it a night. They said I have myopathy (GASP!) and a migrane (strange) and dizzyness for an unknown reason. The meds did help though and I politely declined their offer to admit me and put me on a ventilator. I'm good for now thanks. 

The full IV also seemed to help.

It wasn't until this morning that I remembered the Manuka honey that I tried the day I had the "flair." I came home from work and told my husband that my armpits hurt (I'm sure it was my lymph nodes) and I didn't feel good. Then that night... ambulance. I later read that some people can be allergic and have a reaction to it. Duh! I think that's what happened.

It's also a good reminder for me to watch out for unpasteurized things. My immune system is very sensitive and I think I should stay away from certain things. No wonder the Benadryl the hospital gave me helped! No more Manuka honey for me, just to be on the safe side. 

So now I just say "no" to: Raw fish, Manuka honey, anything unpasteurized, gluten, processed foods, fast food or too much white sugar. 

Not a very big list, but I still struggle with the sugar and processed foods. And despite being an evil company I still miss Taco Bell BIG TIME! But as my husband reminds me "Taco Bell is not plan kick ass."

PKA 3 Weeks In

I just finished week 3 of "Plan Kick Ass" (PKA for short) and here's what's going on with my body. 

I was able to make the connection that I will have at least one period in the day where I just hit a wall. It's literally like being unplugged. If I don't stop what I'm doing and immediately go to bed then my body rebels.

What I mean by "rebels" is my vision goes unfocussed, I see stars, see double, I feel exhausted, my body hurts and I feel physically weaker. It becomes hard to literally keep my eyes open. I have been trying out energy drinks with caffeine and vitamins to help me over this major issue and it has been helping a little. But then I accidentally found something this week that could help even more. SUGAR.

I ate some (...ok... more than "some") red licorice one day at work and I noticed that I felt a lot better in the afternoon. The following day I had 2 teaspoons of honey instead of the sugar and I noticed that it still felt better than the energy drinks that I was trying. Now I'm suspecting I might have some kind of glucose metabolizing issue or mutation? I'm going to try and do some research on it.

As anyone with a chronic illness knows, we are our own best doctors!

Speaking of, here's where things stand medically as of today.

• My primary care doctor 100% supports PKA (I knew he would.)
• My insurance denied my genetic testing for other mutations, but my husband is going to work on an appeal letter this weekend.
• I'm not seeing my neurologist anymore because we hit a treatment wall after the COQ10.
• The Baclofen has been a life saver with the muscle cramps, twitches and spasms.
• I'm still pushing myself physically. I even started wearing my Fitbit again!
• My husband and I are still trying to eat whole, high protein foods.
• I'm working on reducing my portion sizes to help with weight loss.
• I'm napping and resting every day I don't work.
• I'm down to 3 days a week (30hrs) of work instead of 4.
• I've been approved to work from home 1 of those 3 days. YIPPEEEEE!

I also took the stairs today at my doctor's appointment, the first time in two years. I went super slow, but I did it! Going down was MUCH easier.

Next up... current symptoms for September 2019.

(My last symptom share was June 2019)

Not Alone

When you're battling a chronic illness it's very important to learn that you're not alone. I recently joined a Myopathy Support Group online. Many people in the world struggle just like I do with something not so cut and dry to diagnose and that has no real treatment. 

Here's a sample of what I found relatable and helpful when it comes to myopathy.

"I’m similar to you, acquired myopathy due to steroids and/or cyclosporine for another medical condition but other extras sprinkled on top to keep life interesting"

"After reading your story you have my admiration. Mine seems to be through having RA. I'm in the same situation concerning work.. still waiting for some sort of help off the medical profession."

"My doc claims mitochondrial also and put me on coq10. Now i am a bit freaked. My ins refuses to pay for dna testing. What now?"

"Lyrica is my life saver as well! No idea what I have either; many strange, wrong diagnoses. I've come to accept that I'll never know. I don't care anymore."

"I’m going through a similar situation but doctors keep passing me around. At first I had mitochondrial myopathy. Then it’s fibromyalgia. Then it’s all three. Mitochondrial myopathy, fibromyalgia and ddd with herniated discs and spine tumors with stenosis."

"I've first was diagnosed with myopathy in 2012, the doctors couldn't quite determined which kind of myopathy i have, i started going to different doctors and it really got a toll from me and i felt really down... for such an optimistic person like me being down was the worst thing i could think of, so i decided to just stop! I said to myself if i get into a sick person state of mind and let my disease define me that's a terrible situation, worse than the actual disease...so i lived my life regularly on some kind of deny, some kind of a lie i tell myself...for about 5 years... but with recent changes in my life and in my mind, now i feel strong enough to deal with anything life will throw at me, and do it with a smile on my face and thankful for the things i have in my life, not thinking about what i don't...  sooo, bottom line... this is the tip of my story... nice to meet you all, I'm taking my genetic tests hopefully really soon...if you have any tips for me regarding life style nutrition or tips in general i'd love to hear them."

"...So I'm ready to just be done. I'd like to get back to my life and as of October 6th I'll only be seeing my docs for yearly progression checks and that's just fine with me. It was just getting so daunting to try to live my life in between doctor visits so I'm just going to NOT do it anymore."

"So if your dna testing came back unrevealing, does that necessarily mean you don’t have myopathy?"

"OK I have been posting about food. And at this point in time I am taking guesses as I cant afford the DNA testing. But my doc suspects its animal proteins..."

"Hi. How does everyone cope with the leg muscle pain. Can't believe how bad it gets... The pain can cause you to question your sanity"

"After 41 years and getting a diagnosis of what was causing my muscle weakness (myopathy); my doctor told me there’s nothing he could do for me. He did explain that my body doesn’t process ATP, the final breakdown of carbohydrates into all the cells in your body. Also, I had severe exercise intolerance, no endurance or energy and extreme fatigue."

"Anybody see the Netflix show Diagnosis? First episode was a girl with Myopathy. I knew it almost immediately it was a metobolic myopathy. No dr had ever mentioned it or offered genetic testing... NOTHING. Breaks my heart people with rare disorders have to get picked for a show for help. I have had to do my own work and know more than most drs about all these disorders now. That is just sad to me. I know they can't know every disorder off the top of their heads, but she suffered for years and years... Like most of us, I suppose."

"I was originally referred to a neurologist because my gp wanted me to have a muscle biopsy. I had been having severe muscle cramping and severe leg and arm weakness...I don’t know what to do and I almost feel hopeless."

"out with family but legs feel weak have hard time walking even with sitting for a but feel like legs could give way (but some how they keep me up)"

"-it never stops going to appointments, I like my weekends, I take them seriously, September 3rd I see the surgeon to schedule muscle biopsy but my neuromuscular doctor also wants me to see a dietician, i also see 11 other doctors for other issues but I'm exhausted, you all must be exhausted, I am.."

"I've quit chasing answers. I was able to retire on disability. My wife is a teacher and works but I still have kids at home. One in college. I was chasing answers from Ohio then on to University of Michigan, a VA Hospital in Michigan, to John's Hopkins in Maryland and they sent me to a Mitochondrial Specialist at University Hospital in NY City. (there are others) 
I've been miss-diagnosed several times like some of you, ALS, MS, and then Mitochondria Myopathy. I do have Myopathy and Neuropathy confirmed from two different muscle biopsies and other test. I'm a diabetic as well. Whatever I have I quit chasing it. Too much money in medical bills. 
My family doctor and I just treat symptoms. I take coq10, vitamin D, Tramadol, magnesium etc. I've tried many creams and other remedies for muscle pain and cramps. I do feel better than I did 7 years ago but I have to pace myself and plan activities ahead of time.
I have to have my sleep and rest or I won't make it through the day.
I am exercise intolerant and very heat sensitive.
I use a cane for short walking and a scooter or power wheelchair for longer distances.
I'm just sharing so everyone knows your not alone."

Prepping for the week

Meal shopping and prepping is something my husband and I (mostly) do together. Our town has a magnificent farmer's market that we try to go to on Saturday mornings. We stock up on eggs, fresh fruits and veg and occasionally cheese and meat there. 

I try to be careful where my dairy and meat is sourced from and there's a fantastic Scottish family farmer that we love. His eggs are beyond compare, each one tasting like golden love. (I received no kick back for this endorsement, but wouldn't say no to some free eggs.)

My husband has taken to doing almost all the meal prep for the week. He'll fill up all our water jugs then sauté up a giant batch of peppers and onions. We use them on almost anything, but have especially been enjoying veggie fajitas. 



I try and boil eggs for the week (for a work snack) and prepare my lunches ahead of time. This week is a delicious veggie, gluten free pasta salad with fresh herbs and veg from our trip to the farmers market. Delicious! (please read this in the voice of Gordon Ramsay.)

Hummus, bananas and yogurt are also a must have for the week. 

Aside from all this delicious grab-and-go food I like to make sure I'm also mentally prepared for the week. My job is very intense, emotionally charged and can be draining, so every little thing I can do to relax and re-set is very helpful. This means having clean clothes, taking a big nap, not taking on any big activities and feeling physically ready. 

Sometimes that looks like giving myself a facial or taking a bath (if my muscles are doing well enough to get in and out of the tub like that.) This week I got my nails done in a fun "out there" style that I've never done before.

Dragon Eye Nails

My husband and I also come up with a meal plan so we know what to make when we're tired and groggy after a long day. We try and cook together, but some nights all I can manage is keeping him company while he cooks. Just like with grocery shopping. We occasionally go together, but other days (like today) he runs off with a list we made to do the leg work.

I'm adjusting slowly to doing what I can when I can and saving energy for the really important things. It still isn't easy. But having bitchen nails does help.

Plan Kick Ass Progress

I'm starting week three of "Plan Kick Ass" now and I'm seeing improvement. I'm much stronger that I was before and my joints and muscles hurt less. I attribute that to pushing myself physically. I've been walking my dog, not using my wheelchair at work, taking short walks at work, stretching daily and doing chores like gardening and cleaning. Things I haven't done in almost two years!

My eating is going well. I notice that the healthier I eat the worse I feel when I eat something not the best (like gluten free mac n' cheese.) If I stick to whole foods I do well. Now I'm going to focus more on portion size.

We're in the thick of tomato and pepper season where I live and they're delicious! I'll be sad to see them go soon.

My stamina is the same and I still feel the need to nap daily. I am slowly decreasing my Cymbalta and that seems to be changing my sleep. I'm now down from 60mg to 30mg and my mood is still really doing great. I attribute that to the increase in exercise and the sense of accomplishment I feel getting more done and taking charge of my body.

My weight is still an issue for me and something I'd like to work on. Though I feel I'm heading in the right direction. 

And of course... here's your gratuitous puppy picture!