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.

 

 

What is a "disability" anyway?

I consider myself to still be disabled. Many people would see me at the gym, or scrubbing down my kitchen counters and disagree. So why do I claim the word "disabled." What does that term mean to me?

To me any disability is something that gets in the way of your baseline functioning. That baseline is different for each person in the world. Only you know what it is. 

People with insomnia are disabled. If your depression makes you late for work, you have a disability. It's not just someone using a piece of durable medical equipment. A wheelchair, cane or walker. It's not someone with a missing limb or using sign language to communicate. And most of the time it's something you can't see. Like Autism or Mitochondrial Disease.

Yup. Still disabled.

I am disabled. I suffer from horrible chronic pain even now. A few times a week it makes sleep challenging for me. I take a slew of medications to try and keep at a level of pain that I can tolerate. I struggle with nerve damage on the side of my face where I had my brain surgery. It hurts when it is even touched. Often it hurts when it's not being touched. The Botox I take for my migraines helps it incredibly. Botox is a huge tool to keep the pain, dizziness, auras, pressure and other issues from my craniotomy at bay. But even so I have "breakthrough symptoms." Especially if the weather changes or I travel to even a slightly different elevation.

My migraine symptoms often make my head very fuzzy. My constant body pain doesn't help either. This impacts my memory. I often forget what I was saying, especially if someone interrupts me. Remembering names is a nightmare. I wish the world wore name tags.

You can't see any of these things. I don't go around screaming or crying when I'm in pain. The metal plates on my skull are on the inside (thank goodness.) I smile and get on with my life. If it gets too bad, I'll go to bed and try to sleep till the extra medication kicks in. I'm working hard to feed my body right, get rest and build muscle. That is a full time job for me right now and I'm unapologetic about it.

So yes I can walk, laugh, use gym equipment and stay awake through the day (most of the time). I am still a disabled woman and likely will be my entire life. My symptoms are just managed (most of the time) with a lot of hard work and great medical care.

Migraine Torment

I am still waiting for my Botox and to meet my new neurologist while my wonderful, usual one is on maternity leave. I will meet him and get my new shots in 10 days. Not that I'm counting. At least he finally got back to me (after an intervention by my primary doctor) and prescribed me something new to try and help in the meantime. That only took three weeks to get him to do.

My migraines are tormenting me. It feels like someone put me on a copy machine and made so many copies of my brain that now the ink is running out. I feel un-real. Not all here. Like I slipped between two realities. One of pain, dizziness, distractions and the real one. 

Conversations are hard to follow. I feel like I'm just a shadow of myself. A bad copy of who I should be. Quiet and then garbled. I call things and people by the wrong name. It takes a long time to say what I mean. It all feels awful.

I think that's one of the main reasons I tend to over eat. It grounds me. Gives me instant pleasure and makes me feel more... me! When I'm hungry that faded feeling only intensifies till I hit a point of not caring. Then it's actually challenging for me to eat.

Caring about things in my life (other than the people I love) is hard right now. The migraine just erases me bit by bit. 

I can't wait to get my Botox and start to feel like myself, even if it's only a minor improvement. Anything is better than this.

What's New Pussycat? (Oh whoa whooooa whoa...)

There are many new things going on with me creatively, medically and in my home. One of the bigger things is I finally have my BiPap machine. 

At first I was given a CPAP which has continuous air flow. It didn't work for me at all. It was like drinking from a fire hose. It took me about 6 months to get a BiPap instead and I hope it was worth all the work. (A BiPap has less pressure going out and more going in.)

I'm able to tolerate it all night, but learning to keep my mouth shut is still a huge challenge for me. Yup. I'm a big time mouth breather. I have noticed that my lungs feel much better in the morning when I use my machine then when I don't. I can breathe much easier and don't feel as asthmatic. I did read that a BiPap is supposed to be helpful for asthma. 

A non-medical thing I'm doing that's new is watercolor painting.

I've always loved oil painting. But it's very hard to do in your home. It also requires a lot of chemicals, so I stopped doing it when I didn't have a student studio anymore. Acrylic painting is fun, but not the same as oils. But with watercolors there's far less setup and cleanup. It's much easier on my muscles too. It's challenging and new, so I've been having fun with it. 

My garden is really going all out now. We have this beautiful orange-ish sunflower out front that's just perfect.

I love spending time out there when I can.

We're doing a major remodel of our front area right now too. We're excited to have it all finished so we can enjoy it. We're getting new fencing, a new driveway and a new bigger front patio with a water fountain! It's actually more like a small waterfall. I'm so excited to see it done. 

I've been finding the contractors and coordinating as much of it (including the design) as I can. Then my husband jumps in and takes care of the financing end. We're a great team and so far things are moving along. It's a challenge to deal with contractors, let alone 4 of them, but I can do it.

So that has been taking a ton of my time.

And then there's my weight. I hit an all time high about a month ago and am working on reigning in my eating. But it's very hard.

I honestly feel like I don't eat a ton, but then I have to remember that I also don't get very much exercise. The pool is about it. And although it's good for me, it doesn't help me lose much weight. In fact it makes me hungry!!!

So that's an ongoing struggle and something that's on my mind a lot.

I'm also always researching migraines and trying to find something that will help me more than the tools I already have. 

Although I already have pink tinted glasses, I thought maybe they aren't tinted enough? I got the darkest pink that I could at the time. I love that you can just try out a theory by finding a new pair online. I ordered these last night with a darker red lens to try out. Many of these companies take returns too, so if I hate it I can get them re-done in a dark pink similar to what I have now. 

And of course you might have also noticed that I colored my hair red. Actually my mother helped me to color my hair red. As in I told her how to do it and she paid for the supplies and did it for me. What a mom. 

To go from blue/black to flaming copper red is no easy task, even for a fully trained hair dresser. But 30+ years of coloring my own hair taught me a lot! And the few times I did go to the salon for a color I paid close attention. 

It took her a full day, but she managed to get as close to what I wanted as was possible. I've been having fun being a redhead for a change. 

I'm trying to make time for friends in all of this, but my health has been really awful lately. I've needed a lot more rest and down time than usual (which was already a lot). Just making time for family and the house project is about all I'm good for right now. I'm counting the days till my next Botox shots for migraine (still a month away). I'm putting myself and my needs first, which is still hard for me to do.

What Keeps Me Going

 

Did you know that the suicide rate of people with migraines is twice as high as the typical population? And that people with chronic migraines (what I have) are 42.9% more likely to kill themselves than people with episodic migraines? As someone who lives with never ending migraines these numbers don't surprise me. (read the full study here)

I have wished for death before and I'm sure it will come up again. But I would never ever act on it. Despite the constant pain, vertigo, and insane impact on me. And it is INSANE! There is no better word. Despite all of that, what keeps me going? What keeps me here?

Of course Love is #1. Especially love for my wonderful, amazing, fantastic family. They keep me laughing, keep me positive and try to help me as much as they can. I also think they'd all be screwed without me.

Shockingly my doctors would have to be #2. I know many people don't have that luxury of a fantastic medical team. Although they take a lot of time and effort on my end, they also provide me with a lot of relief and answers. I wouldn't have known that I was suffering major migraines without the Neurologist and ENT stepping in and educating me. I also would never have known to try Botox, the one thing that has consistently helped me.

Here are a few other things that not only keep me from killing myself, but make me smile and help me to thrive.

My beautiful garden that I created with my husband.

Silly, fun games that we play together.

We used to LOVE playing all kinds of games and puzzles, but when my Botox has worn off and I'm feeling "like garbage" (like now), these little iPhone games are about all I can manage. I love that we do them together.

Getting out of the house and into nature.

Any kind of nature! I can't drive, but I can wheel my chair around my small town. I can also go to and from my Mama's home. It's great to get out on my own and it gives me a feeling of autonomy, which is vital.

It's important for me to feel in charge of my body as much as I can. Maybe that's why I'm always cutting and coloring my hair.

All of these and millions of other tiny things are why I'm here today. Still fighting through the quicksand of symptoms. Of course a big sleep and some movies in bed now and again never hurt either.

And of course the...

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.

Botox Injections for Migraines - Take 2!

I FINALLY got to have my second round of Botox injections. The first round went very well, even though it took almost a month for me to notice a difference. My neurologist said that I have to wait the full 90 days both because of insurance and because of research showing any sooner than that could be dangerous. Damn.

It went well, though I think I got more shots than last time. My husband lost count and I forgot to ask. I know she was doing a bit larger dose in some specific areas. I have the most problems with my left side (no surprise since that's where my plates are from my brain surgery.) 

It did feel a little more painful than last time, but it's also hard to remember from three months ago. I ended up coming down with a raging migraine and my head feeling like it had been stung all over by bees, but it's all worth it if I can get the same relief (or more) than last time. 

Funnily enough I can live with the migraines, it's the chronic vertigo that did me in. Also the "Alice in Wonderland Syndrome." Vestibular migraines are no joke.

With my Metabolic/Mitochondrial myopathy I have learned that anything can set my body off. I become very sore, very stiff and have an incredibly dry mouth during the night. When these things happen I know something is "off" with my body and I need to just rest. That's what happened yesterday after the shots. I came home and crashed out for almost six hours. Then woke up every hour last night in terrible pain and with serious dry mouth. 

Today is also a rest day.

No shame in listening to your body!

Mine speaks a whole language all her own, but it's one I'm slowly learning.

Curious to read more about Botox for migraines? Click here (no affiliation).