Weight Loss Tug of War

I had a doctor's appointment today. It was rare for me because it had nothing to do with my mitochondrial disease or migraines. I wanted to talk about weight loss.

I've been going from 298 to 285 back and forth for years now. I think the lowest I've been able to get is around 273. And that's been a hot minute. I was down to 263 about 10 years ago. Neither of those are amazing numbers though. I really should be closer to 200-220. Even though the medical industry would likely say more like 190.

As I told the doctor today. I've done it all in the past. Weight Watchers, Lean Cuisines, Therapy, Journaling, Blogging, Reading soooooo many books, Meetings, Workshops, Dieticians... Ugh. I told him I've been overweight for about 25 years now and I need some help.

My mom just started an injectable called Zepbound. He said he thought that could help me too. (No. I'm not getting any kickback for this.) My insurance has to approve it first, but he's pretty positive that they will. 

My Friend's Coconut Wedding Cake Yesterday.

Beyond AMAZING!

I'm hoping to get:

• Cravings under control
• Feeling fuller with less food
• Fewer hunger pains when limiting food
• Past that "hump" of the 280's
• Help to kick start my weight loss
  
  

I'm concerned about:

• Constipation
• My system already being slow now going slower
• More fatigue
• Other side effects

Although I'm not excited about another injectable, I am feeling optimistic. I'm going to journal a lot and try to keep an open mind. I hope this helps not just me, but my mom as well. 

Let's Leg It

My skin is doing much better. I feel very proud to have made something that helped it myself. I'm also feeling more confident and more "myself" since coloring my hair. But there's been something else going on that I haven't talked about. Leg troubles. I want to document it for myself here before I forget the details. 

In the last week of December (almost 3 months now) I woke up one day with what felt like a horrible shin splint in my right shin. It honestly felt like I had been running all night in my sleep. No injury. No trauma. It just was there. 

I tried resting it, icing it, putting a brace on it, keeping off it as much as I could. And every time I would think it was getting better I would get a sharp stabbing pain behind my kneecap and the process would start all over again. The shin splint pain changed to a radiating pain from behind my knee down to my ankle (and lately to my foot and toes.)

This cycle went on for about six weeks before I finally caved and wheeled myself to the doctor's. Sadly I couldn't get in with my usual doctor and even though the one I saw was very kind, she's not my doctor. I had x-rays done, an ultrasound and was scheduled for an MRI that's still three weeks out. 

Keeping off my leg as much as I can

But... my pain has been so intense that I messaged my regular doctor about it. He just saw me Monday. He was concerned and ordered labs and for me to see a sports doctor friend of his who knows leg anatomy like the back of his hand. Get it? Anatomy humor for you.

My labs came back mostly normal, but three indicated inflammation markers that concerned him. I had also shared with him that my immune system has been particularly off lately. Along with my complexion going to hell I've been getting hives off and on and red spots in different places. I'm managing it by taking anti-histamines and using topical hydrocortisone cream. My doctor thinks this might be connected to my knee.

The sports medicine doctor got me in to see him the very next day. He was a wonderful man who took his time with me. He examined me and agreed with my doctor that it is likely something autoimmune happening. He suggested I get a referral to see a rheumatologist. 

He explained that my leg pain sounds like it was muscular to begin with, but turned neurological over time. He expects it will go away on its own (which was a big relief to hear.) He suggested some CBD ointment. And if that doesn't help some CBD/THC ointment or/and tincture.

I appreciate how out of the box a lot of doctors think now and aren't just stuck on prescriptions. Even though he admitted I'm already taking everything he would recommend.

So that's where we are right now. My doctor suggested I take 650mg of Tylenol for Arthritis 3x a day along with Diclofenac 3x a day. (I use my prescription Diclofenac/Voltaren along with Penetrex 3x a day.) I just ordered some CBD lotion to try.

Next steps are waiting to hear back from my doctor and attending my MRI on April 4th. The thought of seeing a rheumatologist again makes me nauseous. The last time was when this all started with a bang. Sudden muscle weakness in my legs and me sobbing in the hospital parking lot. It will be hard for me to forget all of that and move forward. But pain is a good motivator!

November Neurology

I saw my muscular neurologist last week. These appointments are always infrequent and stressful. It's stressful because I know it will involve a lot of testing. This one was no exception. For this visit I tried something new. I drew out an image of my body and what my current issues of concern are. I also made a list and sent it to her ahead of time.

They all shared that the drawing was very helpful. The resident suggested I start a comic strip with her as the main character. That gave me a chuckle.

The clinic had a new Pulmonologist who I really liked. She was very thorough and tested for things I hadn't been tested for before.

She said that I would benefit from a device called a "Cough Assist" and that my lung muscles were testing a little low. Given the lung issues I have that feels about right to me. I'm not too excited about a lung machine, but I'm trying to keep an open mind.

My neurologist chastised me for putting off my sleep study. I rolled my eyes and ordered it after our appointment. -sigh- 

The resident spent way more time with me than my neurologist. He asked me of all my pain what is the worst. I told him my lower back. They both agreed they want me to try physical therapy and if that doesn't help I'll go to the pain clinic for possible injections. I'm glad they listened and offered solutions.

All of this left me completely exhausted and my chest hurt for two days. 

The appointment reminded me that:

• No one knows what's going on better than me.
• No one knows what's going on if I don't tell them or show them.
• Only my symptoms can be controlled, not the cause.
• Doctors care about what's the WORST, not everything wrong.
• Some of my symptoms are scary, persistent and nothing can be done to help.
• Being sick is a lonely experience.

Botox Trial Begins

Yesterday was my first round of 32 shots to see if it will help my migraine symptoms. Specifically I'm hoping to get relief from my constant dizziness, fatigue and headaches. The shots were all around the crown of my head and two in each shoulder. They stung a bit, but it wasn't awful (though I also have many tattoos.)

I was very concerned about the potential side effects listed on the Botox site, but my neurologist is a migraine specialist and does these all the time. She assured me that they have to list every side effect for every use, not just for migraines. The side effects sound scary... but I'm not having the shots in my chest so I should be fine. So far (24hrs later) I've had a headache, minor soreness, tenderness and stinging. 

No washing your hair or rubbing your head for 24hrs, then when you do wash, do it gently. I made the mistake of towel drying my hair after. Ouch! Don't do that next time. Lesson learned.

My doctor said it could work as fast as one week, or take as long as six months. I will go back in three months to do the whole thing all over again. 

I told my husband on the way home yesterday that I really admire my optimistic nature. Even after everything I've been through and only about 15% of things I try helping, I remain hopeful. Hopeful enough to get 32 pokes in the head, cross my fingers and wish it will help.

February - Where I'm at

I'm not kidding when I say I'm a full time patient. In one day I had three medical appointments. In one of them I learned the joys of what barium in all its forms tastes like for a Barium Swallow Test. 

(And why is the woman grinning madly? Why it's because she's trying not to vomit while holding massive amounts of barium in her mouth of course!)

Don't throw up or you'll have to do it all over again!

I also got to have this lidocaine nozzle shoved up my nose before a camera tube followed. Who knew they look at your throat through your nose? Now I sure do! (Kidding, he didn't "shove". He was very gentle and I'm being dramatic because I can.)

This was the petite nozzle that went up my nose. 

Only about 4 inches.

TAH DAH! My voice box and surrounding muscles. 

See the resemblance?

The tests all went well and they found some interesting things. Myopathy that affects my voice and muscles in the back of my throat that tire just like the ones in the rest of my body. They want me to see a speech therapist to get trained in some lung exercises to help protect me from pneumonia. I asked if I could just blow bubbles and pinwheels instead and the dude didn't even crack a smile. Doctors are just too serious sometimes!

So here's medically where I'm at:

• Referral for EMST (fancy for lung stuff) through a speech therapist
• Occupational therapy for my tweaked shoulder
• Occupational therapy to maintain muscle strength (even though strength isn't my issue, it's stamina)
• March 11th is my neurologist consultation for Botox for migraines (not the actual procedure. Hold your horses Ms. rushy rush! You have to be consulted first!)
• March 19th is when my wheelchair will finally get picked up for the modifications I've been trying to get since October (a higher headrest and knee abductors)
• March 22nd I check back in with my primary care doctor about everything
• Working on getting a nebulizer for home after needing urgent care and the hospital last year for breathing issues (mostly after travel)
• My teeth are clean, but I need a few procedures, so that continues in April

But what about FUN!? What's going on that's NOT related to medicine or illness?

• I'm enjoying the new show Lego Master with my honey
• My mom and I have a blast at our weekly Trader Joe's run
• I try and take Sweetie out every day, even if it's just around the block
• Daily I sit on my shower stool and pretend to be a mermaid while in the shower
• My husband and I are going to a Capitola beach house with friends in early April for the weekend
• My mom is taking myself and my son to Monterey during his spring break (one of our most favorite places in the world!)
• I just planted a little herb garden by my door
• The nature here is already springtime beautiful! I try and get out in it as often as possible
• I painted my toes rainbow and they make me incredibly happy

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.

Neurologist to the Rescue!

Making funny faces while I still can.
Till I gave myself a headache.

Today was my three month check in with my new neurologist. This time I came armed with the three topics I wanted to cover.

1. Dizziness
2. Headaches
3. Massive Exhaustion Daily 12-3PM

After doing research I'd come around and agreed that the migraine symptoms I was experiencing for the last seven months or so were likely being caused by neuromas from my brain surgery. Nerves that get trapped in scar tissue and cause pain. Both the ENT and my neurologist said "Yes, they are migraines. That's why you're dizzy". Got it. Now we're all on the same page. NOT caused my my Metabolic Myopathy at all. 

The appointment went well and we have a new plan of attack. We're going to try Botox to see if we can get the muscles to relax and the nerves to stop sending pain signals. My neurologist said that's important to do as fast as we can because otherwise the body "learns the pain and it won't stop". (((GULP!)))

So onto insurance who must approve this treatment (because this is America and insurance companies know better than doctors here), then onto another neurologist who does the injections. Then I have to wait to see if it worked or not. I was told it might not work the first few times and each time I have to wait three months. Soooo... (breaking out the calculator) IF my insurance company approves it ASAP it could still be at least another month before I even get to try it and up to six months for it to work at all. IF it does work. 

My version of "fast" and medical "fast" are two VERY VERY different things. I really must keep that in mind. 

As far as non medical interventions, he approved the use of my home Tens Machine on my head (despite my husband's fear that I would fry my brain with the titanium plates in my head a la' Frankenstein's Monster). I also have this beautiful new cold pack cap to try out (I think I saw it on Project Runway?) And something called Sea Bands.

The Sea Bands are a recent addition to my arsenal and have been shockingly helpful with my dizziness. I read a review by a woman with migraine induced vertigo who swore by them, remembered we owned a pair, tried them out and WOW! Well... half a day later... WOW! They are really helping me.

As far as the exhaustion that happens daily, the neurologist said that it could be explained by something called a "Migraine let down effect". The symptoms he described were very much what I go through every day around 12-3PM. Exhaustion, blurred vision, mental fog, weakened muscles. He even used the analogy I use "It feels like you ran a marathon". He suspects that taking care of the migraine might also (hopefully) eliminate this daily ritual as well. 

I'm feeling good with where my neurologist and I left off. I really like him a lot. I think he's my sixth? I'm glad I didn't give up and my PCP encouraged me to go back to the neurology clinic. 

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.

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!?

What do I do?

I'm feeling worse every day. Both my muscle weakness and this horrid dizziness! Today I bought some Claritin as a last ditch effort to try and "solve" it myself. I think it's part of the myopathy, but I'm not against trying everything I can first. Literally the last thing I can think of is that it's allergies and my body is just having a two year old volcanic meltdown.

That would give anyone allergies, right?

What makes the dizziness better is sleep. What makes it worse is everything. My doctor is sending me to an ENT to rule out any kind of vestibular issue. Like I said... I'm open to anything. I even called Radiology today to see if they had any cancellations and could get me in for by brain MRI sooner than 11 days. Not that 11 days is that far off, but I seriously feel like each day is a big deal.

Remember The Hunger when David Bowie's character starts aging instantly? He finds Susan Sarandon, a specialist in aging, and tries to talk to her but she leaves him out in the waiting room. A few hours later when she comes back he's aged like another 40 years. Yeah... it feels like that. 

I know how you feel David. 

Along with the dizziness my muscles are getting worse. I feel a sense of urgency I haven't felt in a while. Each time I do something I wonder "Is this the last time I'll be able to do this?" I put something away in the garage today and randomly fell down. It was pretty scary.

So "what do I do?" What do I do when each day I feel worse? When I have to wait and wait for each doctors appointment and for answers that are few and far between? My insurance declined our appeal for the full genome sequencing that might have shown some helpful mutation. Or maybe not. Now we're waiting for new insurance to re-apply. So what do I do every day?

I get up. I do what I can. I skip what I can't. I ask for help when I need it. I keep calling doctors. 

SSDI is looking like it might be in the near future. 

I miss my work. I miss my old life. Today is just a "poor me" day and that's ok too. Tomorrow will be better. I hope. 

Accomplishments

When I was in school an accomplishment was finishing a major assignment or passing a tough final. When I was working an accomplishment was making a breakthrough with a client or making my bonus. Today an accomplishment is doing a load of laundry or watering my plants. 

Accomplishments are necessary goals that keep me feeling good about myself, my skills and my life. Even though those goals have changed drastically over the last month, they're still important for me.

Here's a few examples of what I consider to be accomplishments this week:

1. I turned in my application for my town's disabled community transit and got my card. This gives me more options to get out now that I'm driving much less.
2. I asked my doctor to sign off on some important paperwork for me... and he did! 
3. I got my first SSI disability payment. That was an intense process and I felt proud that I accomplished it. 
4. I made it to the mall with my mom (she drove).
5. I made dinner last night. It was hard, but I did it!
6. I walked my dog twice this week with my chair.
7. I talked to my doctor about my new symptoms in person.
8. I made an appointment with a new neurologist and scheduled my next brain MRI.
9. I shaved my legs.
10. I went to the bank (like INSIDE!) and stood while I waited.

Disability, Dizziness and Doctors

It has been one week since I've been out on my three month medical disability leave from work. Luckily I've had my mother visiting to distract me, otherwise I think I would still be crying almost every day. I dream about my work and miss it constantly. Unlike a lot of people I loved my job and I loved working full time. I do know that I literally did everything I could to keep working. My body just couldn't manage it right now and that's ok.

I saw my doctor about my dizziness, headaches and foggy headedness. He ran some tests and found that my thyroid replacement medication was too high a dose. Today's my first day on a lower dose and we hope that's the cause. 

I also went to my eye doctor yesterday because OVERNIGHT my vision got worse, especially in my right eye. Everything bad seems to always start on the right side of my body. No idea why. He confirmed that in the eight months since I saw him both my eyes have gotten worse, but especially my right eye and especially close up. He said it could be from the Baclafan, or it could be from the myopathy. No way to really know. 

But hey! At least I don't have to take time off from work to make all these appointments. Right? Now I get to be a full time patient. 

Speaking of, I also get to schedule my next brain MRI today. I have the follow up from my brain surgery soon and my primary care doctor also wants to rule out anything scary going on causing the dizziness. I appreciate his attention to detail. 

Lastly my husband and I have been talking about getting a wheelchair van early next year. Luckily there are a lot of options where we live, including a lease. The gas milage on them is terrible, but it would give me a lot more freedom (like all my other tools). I want my life to stay as big as it can. Using my big chair is not only more comfortable, but it saves me a lot of energy over other devices, which means I can be out more doing the things I love!

Stay tuned for car shopping. Which is more fun than a brain MRI. 

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. 

Depression and Chronic Illness - One Year Later

Last April I shared some tips on ways that I help myself with Chronic Illness and Depression. But sometimes that's just not enough. Last July I had a few weeks where I just couldn't stop crying. I was about to start a new job that wanted me to work 40 hours a week and was struggling with illnesses that then still had no name (now I know it was a brain tumor, Metabolic Myopathy and Rheumatoid Arthritis.) I talked with my doctor and he put me on Cymbalta. That helped my mild depression and my joint pain. Things were good. 

Fast forward to today and I'm feeling the fog of depression again. I'm feeling numb to things I should feel engaged in, everything feels hard like I'm running through molasses (and I'm not talking physically, but mentally and emotionally.) I feel sad and things at work that are usually easy are becoming hard. I sometimes think about being dead and how lovely it would be (but not to worry, I'm not suicidal. There's a difference.) I feel overwhelmed and exhausted mentally. 

I think these are very common feelings when one is struggling with a medical condition or chronic illness. I once asked a friend with a spinal cord injury how she keeps so positive and she said "I don't allow myself to think any other way." So Cognitive Behavioral Therapy is what works for her. For me that can only work so long or so well.

So I messaged my doctor yesterday about increasing my Cymbalta. He asked my symptoms and I shared with him and now he wants to see me today to talk in person. I'm ok with that. I'm suspecting that instead of increasing my Cymbalta he'll want to put me on something else. Any help I can get will be appreciated.

But why not try therapy first? Well, I've had a lot of therapy in the past and I'm actually really good at using my non-medical tools. But I think there comes a time when therapy just isn't enough. You need help and you need it fast. 

On the non-medical mental health front I am trying out a support group on Saturday May 18th in my area with the Muscular Dystrophy Association. It's a "Mixed Diagnosis Group." So it's for adults with all forms of MD to come and talk. Partners are also welcome so my amazing husband will be coming with me. You can never have too much help or too many tools.