Finally Some Good News

 My coffee the other morning. I treat myself.

Good Goddess...

I've been battling with my neurologist and health insurance for almost seven months now trying to get back on Botox. You have no idea how much work it's been. Phone call after phone call. Disconnections. Wrong people. I finally got some headway about two weeks ago when an agent from my health insurance was committed to helping me. She told me what had gone wrong. The neurology department kept filling out the request form wrong. And how to fix it. So then I finally found the billing person for neurology (after asking for them a million times.) WE GOT TO TALK. That was key. I told her what insurance told me to tell her and gave her my amazing customer care agent's direct phone number.

And guess what came today? Take a wild stab at it.

MY BOTOX GOT APPROVED!

I never had this issue with my old neurologist. I will give Mr. Screwup kudos for discovering my seizures. But man. What an endeavor that was. AND I got a notification two weeks ago that he's leaving. He was hardly there. I was really shocked. It made me wonder if he was causing all kinds of billing problems? Because at my one and only appointment with him he said that he could get me Botox and keep my pill treatment. I was specifically told in the past that it's one or the other and insurance won't cover both. He bragged that he absolutely could get it through.

Hah. He couldn't even get my Botox through. Loser. Bragger. Useless.

Some doctors are like that I've found. Just in it for the ego boost. I knew some therapists like that too. I think in "powerful" jobs where people depend on you, you can find that type of person. Of course along with others who just genuinely want to help people (like me.) 

Lesson learned. 

That's a lot of shots to look forward to. 
But it helps.

#1 Run from a bragger. The next time I get a doctor like that, I will ask to see someone else as I leave.

#2 I can literally do anything. I am a strong ass, persistent woman who can make anything happen. Just like my mom. She taught me well.

Now to get my son on disability. 
Cross your fingers (and toes) for us.

 

 

The Other Thing...

Mitochondrial Disease and Migraines take up such a huge part of my life, my time, money, resources and attention that it's easy for me to dismiss other things going wrong with my body. That troublesome hip. The ankle that wants to roll. And my ear that plugs up each time a storm rolls in.

I've had Eustacian Tube Dysfunction for about 10 years now. However, it is progressively becoming more of a problem. Any time I have a change in altitude or barometric pressure my right ear plugs up and refuses to un-plug without drugs. Often it becomes infected and I'll require a course of antibiotics. Obviously I have to go to Urgent Care to get the help to fix it. The last time I went they told me I really should see a specialist.

Fine... They were right. 

I scheduled an appointment with my ENT. It went very well. Even if the scale must be broken because no way can I weigh that much today.

We went over my options to treat this ongoing issue and settled on surgery. There's a brand new procedure they've been doing for only a few years. It has a 65% chance of success. I'll take it over a tube in my ear.

The other thing that has popped up is a tumor on my right boob. Seriously. I always have issues on the right side of my body. It showed up in my recent mammogram waving "Hi" with its 3mm body. I have to go back in two weeks for a second more detailed scan.

Bodies are just like houses. It's always one thing or another. At least my sink isn't leaking (yet!)

Face It

My skin has been a hot mess lately. Huge pores, blackheads, pimples, you name it. I don't know if it's stress, a gift for "welcome to 50!" or hormones, but it has got to go. I have been feeling like I'm fighting a losing battle with my face.

I was looking online last night at some "good" store bought remedies. Not only did they cost a fortune, but they were full of chemicals. Even the "natural" ones. So after researching some of the ingredients that were helpful for acne I decided to make my own. "Hell! I own French lavender, aloe vera and rosemary bushes!" 

Here's the recipe I'm trying out. I invented it all on my own.

Compound (I put all this in a pot)

1 big bowl fresh French lavender heads (about 4 cups)

2 small springs rosemary

1 very large aloe leaf, split and de-goo'ed

2 tbsp coconut oil

2 tbsp olive oil

2 tbsp apricot seed oil

2 tbsp castor oil

2 cups distilled water

Steps

Bring mixture to a boil

Boil for 5 min

Lid and bring down to a simmer

Prepare small jars (1 cup), one for each treatment. Write on the lids what each one is, or label...

Soap

1 tbsp Pure Castille Soap

4 drops tea tree oil (natural disinfectant, good for acne)

Mixture

Lotion

1/2 tsp rubbing alcohol (as a preservative)

Mixture

Mask

4 tbsp European Clay

1/2 tsp rubbing alcohol (as a preservative)

Mixture

Simmer for a full hour

Strain (Press down to get all the oils and aloe from the pulp)

Add mixture to each jar evenly

Yields 3 cups

Bonus: Drink your water and listen to music while you wait.

Super Extra Bonus: While waiting put full fat whole organic yogurt on face. (share leftovers with your dog/cat.) Let stay till firm. Wash off and pat dry. Smear pure coconut oil on your hair and scalp. Cover with a kerchief or shower cap and let sit till you're done with your project. Wash off with shampoo and massage your scalp with warm water. Follow up with an apple cider vinegar/water rinse for the ultra treatment!

Why was my main ingredient lavender? Because it's a natural anti-inflammatory that's good for treating acne. It is also a natural calmer and can speed up the healing process.

Olive Oil: Has a similar lipid makeup to our natural skin. Helps with cellular regeneration.

Castor Oil: Anti-inflammatory, anti-microbal, immune system support. Great for acne.

Coconut Oil: Calms red skin, moisturizes and is easily absorbed by the skin.

Apricot Oil: Helps immune system like lavender. It's high in vitamin C and E so it works to fight acne and smooth my skin.

All oils help the skin retain moisture, my skin runs on the dry side so I need it.

European Clay: Is a favorite of mine. It naturally draws out impurities from the skin and gives the appearance of smaller pores. It works a lot like activated charcoal without the mess.

Aloe: Non-irritating and great for all skin. Healing properties. Moisturizing and anti-inflammation elements. 

My Migraine

No... "Migraine" is much too small a word for what daemon has wrecked my life. The clinical term might be "migraine" but it's more like an evil possession.

Some of my current diagnosis

My muscle disease affects my body, but the migraines rob me of much more. Most days I feel like a shell... a ghost of my former self. It robs me of my memory, my attention, my eyes focusing, trusting what I'm seeing. It causes me stabbing pain, electric shocks, ear ringing, momentary hearing loss, throbbing pain, visual hallucinations and a general feeling of being really drunk or really high without ingesting anything.

Personally I think all of this is a side effect of my brain surgery on September 27th, 2018 (28 months ago). I read that nerve re-growth and associated issues can take around five years to heal. I would have proceeded with surgery anyway, but I wish someone would have gone over the side effects and talked to me about migraines.

My entire life I've infrequently had very minor headaches. I'd pop a few Excedrine and off it went. I knew people who struggled with migraines, but I thought it was just a super bad headache that maybe caused some nausea, light, sound and scent sensitivity and would last about 24hours. At best I feel like I knew a little bit more than the average person.

But when my migraine symptoms began it wasn't with any of that. I'd have a little headache behind my forehead. Just a tiny one. My symptoms started with feeling very dizzy. I felt like I was hearing myself talking from another room when I'd speak and hearing others talk I felt very far away. That's a big problem for a therapist. I was scared and had no idea what was going on. 

I quickly became too dizzy to safely drive. My husband began taking me to work. After that I could "hang in there" till lunch time, but the symptoms just got worse. With it came the crushing fatigue. I wasn't just tired, I was completely exhausted. It felt a little bit like a horrible hangover.

The headaches began getting a bit worse, but the other symptoms increased quickly. I started to have trouble focusing, both mentally and physically. My eyes would go blurry, like I couldn't physically focus. Of course I still had my muscle issues as well. The worse my migraine symptoms became the weaker my other muscles were. Soon work was ordering me a text to type program for my files as I lacked the physical stamina to type for any length of time. But nothing helped and I became too compromised to work at all.

I had no idea what was going on. I talked to my primary care doctor, crying in his office. He sent me to a neurologist and an ear, nose throat doctor (otolaryngologist). Both of them diagnosed me with migraines right away. I kept arguing that it couldn't be migraines as my headaches "weren't that bad!" I had no idea that migraines take many shapes for different people with an enormous list of effects. I sure know that now!

Every... single... day I struggle with nightmarish symptoms.

I can't work.

Some days I can't even leave my house.

I'm proud of myself for getting out of bed, dressing and showering.

A big part of my life has been reduced to that of a small child.

I have a lot of feelings about that.

Grief

Loss

Anger

Sadness

Fear

My current treatment regimen involves:

• 32 Botox injections around my head and neck every three months.
• Monthly Emgality injection.
• A cocktail of Procholorperazine 5mg (for dizziness and nausea), Naratriptan 2.5mg and 2 Acetamenophin 500mg taken together as needed (but no more than three times a week).

These all help a little.

I'm still not myself though. 

Still unable to do very much.

The worse my migraines are the more exhausted I am and the weaker. It's a nasty cycle. I'm hoping something will click soon to cause a massive improvement or they will heal and go away completely. That would be wonderful!

Until then I sometimes struggle to feel my worth. It takes a lot of intention and attention to really live in the moment. Not let each one slide by in a fog. I do have a beautiful life and I don't want to miss out on any of it.

What I Can Control

There's so much about my body that I can't control. I have no say over my pain, migraines, dizziness, cramps, spasms, blurred vision, brain fog, fatigue... well... anything. There are some things that I can control however. One of them is my dental health.

No control

I have always been afraid of the dentist. I remember being very young and having a dentist literally lay his arm across my face as he worked on me. Another had the worst breath you can imagine that he breathed right on my face for what felt like hours as he inflicted nothing but pain. I thought intense pain was just part of the dental deal and all dentists were sick sadists.

As an older adult I finally found a good one. Though good dentists always seemed to hire evil hygienists who were awful. So it was common for me to go years and years with no dental care. 

I swore 2020 would be my year to get caught up on my dental care. I had finally found a good dentist who had been gentle with my son, so I thought I might be in ok hands. 

Let's Go!

Luckily I was right about the new dentist and everything went well. I'm now all caught up and can just keep up with my cleanings instead of needing expensive, painful work done. And he made sure it didn't hurt! YAY! I met my goal of catching up on my dental care this year and I feel really proud about that.

Now I'm on a roll and am working on getting a whiter smile with just those white strips you can buy. I like my fangs and crooked smile, but want them to be nice and clean looking. That's something I can fix and control.

Same Symptoms, Different Day

I used to keep a running list of my symptoms and share them with all of my medical providers at each appointment. This was helpful in the beginning because we had no idea what was wrong with me. When I started the quest for a diagnosis it was 2018 (2 years ago) and we were thinking it could be rheumatoid arthritis? An autoimmune disease? All I knew was I had a lot of pain that left me crying at night.

What it turned out to be was:

• Stocking glove pattern neuropathy
• Benign brain tumor
• Metabolic/Mitochondrial Myopathy

I also had a complete hysterectomy in 2015 due to major reproductive health issues.

I assumed at the time that my problems were mostly neuropathy (that I believed was caused by my Latent TB treatment the year before) and autoimmune. My symptoms were all pointing to RA being the main culprit. But then the sudden muscle weakness hit. From one day to the next I suddenly lost about 80% of my strength.

It took a very long time and many referrals to solve the riddle of my muscle weakness. The current consensus is that my mitochondrial cells (the power cells of the body) don't process energy correctly. I have 3 genetic mutations that have been identified that could be the cause. All of this is pretty new science so everyone is really just doing their "best guess." I've learned to be the expert in me.

Unfortunately either the brain surgery that I had in 2018 or my Mitochondrial Myopathy have cause me to also suffer from Vestibular Migraines. Shockingly these have been more crippling than my myopathy. So if you're keeping track it's:

• Vestibular Migraines
• Metabolic/Mitochondrial Myopathy
• Stocking glove pattern neuropathy
• Osteoarthritis (and possibly RA)

It's been about a year since I posted my symptoms. I also don't really keep track of them anymore. There's a few reasons for this. 

1) I'm tired of talking about it, looking at it and only being a "sick person."
2) My symptoms haven't really changed.
3) It's more useful to alert my healthcare team about NEW things if/when they come up.
3) New symptoms can get buried under my massive list of health issues and get overlooked by my doctors.
4) I have a great team who keeps good records of my health diagnosis, visits and concerns so it's a bit redundant at this point.

Rather than bringing in a list of symptoms with me now to an appointment, I bring specific concerns and/or questions that I have. I always take notes and I very very rarely go alone. This helps make sure I don't miss anything (as my memory can be a serious issue).

When I look at the list of my past symptoms I still have all of them. However, I also have treatment that helps me manage them. I feel positive that I will soon have treatments in place to help 100% of my symptoms be bearable.

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."

Long Awaited Answers

California has been buried in smoke these last few weeks. But despite the scary air quality I've been working 30 hours and attending my never-ending slew of medical appointments. Last week was the much anticipated EMG to test the electric nerve impulses in my arms and legs. Everything looked fine. But yesterday was the BIG appointment with the Chief of Staff of Neurology. The big cheese. The head honcho. The person with whom the buck stops. 

Well, we possibly have some answers as to what the heck is going on with my muscles and why I start off strong, but then get weaker and weaker. He thinks I might have a rare genetic condition called Metabolic Myopathy. Basically what it boils down to is the muscles don't use energy how they should and they progressively get weaker the more they are used. BINGO! It sounds like we may have a winner.

Of course this means more testing and more testing and more testing because there are different types of MM that require different treatments. So now we're doing all that and I won't go back to see this "Magic Man" till January. Drat! More waiting.

Charities known in Greek Mythology as the Three Graces

So now much like the Three Graces I'm trying to spend this time bringing "Brightness" (like Aglaia), "Good Cheer" (like Thalia) and "Joy" (like Euphrosyne) to myself, my family and my work. I'm relieved to possibly have an answer, but also a bit broody about the whole "more waiting, more testing" part. Of course a bit of jewelry never hurts to help me keep in good spirits.

In case you're keeping score, since 2015 I've now had:

1. Latent Tuberculosis
2. 9 months of awful treatment for TB that left me unable to do anything
3. A total hysterectomy
4. Stocking and glove pattern peripheral neuropathy
5. Rheumatoid Disease
6. Raynaud's Disease
7. Meningioma (benign brain tumor on my left temporal lobe)
8. Brain surgery
9. Severe Muscle Weakness (possibly Metabolic Myopathy) 

They say what doesn't kill you makes you stronger. 

I think I'm now a super hero!

Day 13 - Staples Out!

I had my first post-op appointment on Wednesday and it went super well. I feel I completely lucked out with the level of care I was given by my neurosurgeon Dr. Shahlaie. As fast as this all happened he was completely reassuring, empathetic and enormously talented. The whole procedure was minimally invasive (what he specializes in) and I feel like I won the brain tumor jackpot (if that makes any sense.)

Me & Dr. Shahlaie at my appointment.

I told him I'd remind everyone that I shaved my own head so he wouldn't get blamed.

I learned the there's a very small chance the tumor will return, but he got the whole thing and everything is healing really well. I also got some super cool pictures of my scans and was able to compare pre-surgery MRI to post-surgery CAT scan (the night after surgery.)

But first! Here I am with no more staples! YAY! I can report that it didn't really hurt coming out either. More like a little pinch. Thank Goodness! I was a bit scared about it.

14 staples gone!

Now here's the MRI of my tumor on the left and the CAT scan without it on the right just after surgery. It's amazing how fast my brain tissue was taking the space back up that the tumor was filling. The black lines on the CAT scan are silicone mesh that they inserted between my tissue and skull. That will stay.

The blue circle here shows the part of the skull that was removed to access the tumor.
You can also see the staples to the right side of it (that are now gone.) 

And here we have what I consider to be the most interesting picture. It's a CAT scan post surgery showing my 3 plates and 10 screws. To make it easier to see I color coded it.

• Blue is the piece of skull that was removed and put back. 
• Red is the 3 plates. 2 are straight bars and 1 is a round one. All are titanium
• Yellow is the 10 titanium screws keeping everything in place.  

You can see the staples here too, but that's just in the skin.

All the other hardware will be with me for life now.

My husband calls it "jewelry for my head." Hahah!

Here's what the round titanium piece looks like not in my head. I think it's really interesting looking!

Here's the scan without my markups. It's a bit harder to understand, but easier to see all the details.

I got cleared for lifting 20lbs and doing moderate exercise (as long as my muscles cooperate of course.) I'm trying to be more active and get some exercise. My father-in-law gave me the fantastic gift of clearing out my garden for me, so I'm now trying to beautify it and give it even more love. So far it's hard for me not to do too much, but I'm trying!

My amazing father-in-law going to town on my mess of a garden.

What a great gift!

Any Questions?

"Do you have any questions?"
YES! 

What's wrong with me and how can we fix it?