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.

Permanent disability denial

Well... THAT was fast!
It turns out I don't qualify for any form of disability other than State Temporary Disability. The very nice representative for Federal Disability explained that there are two ways to qualify for "permanent disability" and two forms of it (so that's three kinds total! WHAAA!?!) 

1. You have worked pretty much continuously for pay for the last 10 years. I think that number fluctuates based on your age. For me it was 10 years.
2. You and your partner (if you legally have one) are legally low income (including your assets like car, home, etc.)

Taking a dog "walk" (roll) break

He told us that unfair as it is being in school or a full time parent for the last 10 years doesn't count for anything according to the government. You need to have been paying into the social security system to be able to draw on it in any way before retirement age.

Also your partner working for 10 years doesn't count for anything if you're still together. But their income and assets count against you for the second type. 

I told my husband I don't know why they even call it "Disability" if your disability isn't the first thing they consider? Bottom line, the American government doesn't part with money easily (unless you're a corporate investor in the political system?) It's very messed up.

Overall I'd recommend applying over the phone. Just skip the online process completely. Also call your local office, not their main number. It's much faster to get through. Even if you think you may not qualify it's still worth applying because you never know. Same for temporary disability.

I'm grateful to a friend in my Muscular Dystrophy support group for encouraging me to apply for temporary disability even before I knew I would need it. I was very resistant when he first brought it up, but I did end up needing it and it has been a real life saver.

My puppy was helpful when I got stressed and sad.

So, I'm still unable to work and my benefits will max out soon. That means all the financial burden and pressure is on my husband, which I HATE! It really upsets me to not be able to make any money right now and YES! I feel like even more of a burden, which is an awful feeling.

He tells me all the time that I'm not. And logically my head knows it too. But you can feel much differently about something even if you know the situation is a contradiction. I FEEEEEEEEEEL like a burden period.

Stopping Topamax

It is important to remember that even the best, most caring doctor doesn't know the whole story. Doesn't see the whole picture. They (hopefully) do their best to care for you but at the end of the day you need to be the REAL specialist, advocate, researcher for yourself.

That said, Topamax was not for me. I tried 25mg for one month. My neurologist wanted me to give it two months and I said "no thank you". I understand why he wanted me to try it for longer, but the side effects were too much for me and the benefits not enough. 

And a little advice about being a wise consumer. ALWAYS read the FDA information vs the information from the manufacturers website. Always. Just skip their website completely actually unless you're looking for a coupon or rebate.

These are my symptoms that got worse on Topamax:

• dizziness
• dry mouth
• "foggy headedness"
• forgetfulness MUCH worse
• reduced my libido even more
• wiped out my appetite.

Well, that last one wasn't bad, but for some people it could be. I was also on the very lowest dose for the very shortest time.

Both my dizziness and the migraines I think are from my brain surgery. Even though it has been a little over a year, I think the nerves are just now growing back and I'm experiencing pain and dizziness. That's my theory and I think it's pretty solid.

So far what has helped me more than the Topamax has been...

1. Taking Potassium pills at night with plenty of water. This helped with the dizziness a lot. My neurologist suggested it when I said the Topamax was making things worse.
2. Taking more Magnesium than what I was already taking. Again, recommended by my neurologist.
3. Taking the over the counter supplement called "MigreLief". Recommended by... yup. You've got it.

There's plenty of other non medicinal things I haven't tried yet. I have my first follow up on the 12th with my neurologist and I told him I'd like to discuss them.

My muscle weakness seems to have hit a homeostasis (for now... Thank GOD!) That feels nice. I'm still doing what I can but careful not to push it. My body and I feel like we're on friendly terms and that's magnificent. I think she's a lot happier now that I'm not shaving her down like a sheep in the spring every few days. Hahah!

So now onto trying new things after my two week slow reduction off Topamax. Never stop any drug all at once or without notifying your doctor.

(I received no incentives and I'm in no way affiliated with any of the links on this blog.) 

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.