Off the Pills... YAY!?!?

So, I can walk again!

And I figured out why I was twisty and shaky!

Muscle fatigue! (I slouched and walked with my knees partly bent for 2 days, and it stopped completely... When I stood up straight, the twisty would start in my trunk; and when I locked my knees they would shake like crazy...)

Now I'm off the meds, more dislocatey... Not falling over... Not shaky... Not twisty...

I have a bit more energy, but a lot more pain. It's been mostly just my shoulder, and it seems to be... Different? Louder? Harder to ignore maybe? I don't know what it is, but my shoulder has been screaming at me since Friday.

But I have ENERGY! and I want to go ROLLERBLADING! But it's really HOT outside... :(

I think I'm going to see if we have a decent rock-climbing-wall-place in or around the city. It would be torture to my shoulders, but at least it might help prepare me for climbing the mountain this summer... Which I still FULLY intend to do.

Just Because I Didn't Go To Medical School...

Does NOT, by any means, mean that I am medically illiterate, or unknowledgeable about what is going on within my own body. And as such, I DO NOT appreciate the disrespect and belittling I received while trying to find a diagnosis for my movement disorder, so I can get on a treatment plan which might actually BENEFIT my health, as opposed to the "throw drugs at it until something works" method which is so rampant in the health care system.

I saw the neurologist yesterday.

She told me my symptoms were psychosomatic, and with the recent tragedy of my grandfathers' passing, I would benefit more from a psychiatrist than a neurologist.

She told me it was all in my head.

I wanted to smack her.

My Hubby came with me to the appointment, and he said he would have walked out of there within 5 minutes because of the way she was talking to me. But he stayed. Moral support and all that.

She contradicted herself with every other sentence.

She said that if there was any problem with my brain, they would have found it on the MRI, or with the blood tests. Because "If I can't see it, it doesn't exist." (Not a direct quote, but close enough)

The only thing she did agree with me about was getting off the Clonazepam. I have 2 more pills, and I'm done with it for good.

I asked her if she could write me a referral for the MAYO clinic in Arizona, and she said she would.

I am still waiting for one test, which she ordered 2 months ago... An EEG... And we'll go from there.

The experience was entirely frustrating, and exhausting, and if I NEVER speak to her again, it will be too soon.

She also stated that even though she didn't see me when I was hospitalized, she doubts the diagnosis of Truncal Ataxia, even if it was drug induced... I was seen by SEVERAL neurologists, and interns, and they ALL agreed it was Truncal Ataxia while I was in the hospital... It's like this lady is in her little diagnosis bubble, and if it's not something SHE can diagnose, then obviously, it doesn't exist.

Happy Birthday to ME!!!

It's my birthday today. I'm 23. Today I found it necessary to start walking with a cane, as I am incapable of walking faster than a snail without it.

It looks like I won't be celebrating at all, because I don't trust my feet enough to stand up and sing at karaoke. Drinking is pretty much out of the question with the meds I'm on, and I have NO ENERGY. None.

So it looks like my birthday, which falls on a rare Friday, will be spent at home with my hubby and our roommate. She said she'd cook yummy things for me though. So that's nice.

I need a nap.

...And That's When My Head Explodes...

Yesterday was... Bad.

I woke up to my new-normal... Unstable, tired, etc. Went to work, started twitching... A LOT more than I have been lately. Then I started with the "tremors" and by 10:00am I had the "twisties" ALL AT THE SAME TIME!

We're short 3 people at work right now as it is, but I was non-functional enough that by 11:00am I was sent home.

At least I didn't fall. The falling and the twisting seem to be mutually exclusive. Which is about the only silver lining I've got at the moment. Well, that, and I'm seeing the movement-disorder-tourette's-specializing-neurologist-lady on Monday.

And I've got a few things to say to her...

Good Grief!

No longer an oxymoron in my books.

My grandfather's service was quite incredible. He passed at 88 years of age; 2 years after his wife, and 4 years after his youngest son (my father).

Our family has been grieving for the past several years. My grandfather's foresight was our saving grace. His wishes were that he wore a specific t-shirt for is viewing. It read "Do Not Disturb" and had a picture of Dopey from Snow White and the Seven Dwarfs sleeping soundly. It's this kind of dark humor which runs rampant in our family.

The following day, at his service, there were photos of him and the family cycling on the wall behind the pastor. As the pastor said "May we all bow our heads in prayer..." a picture of my grandparents kneeling in prayer flashed behind the pastor. The whole family burst into laughter. We tried to stop laughing, but the best we could do were muffled giggles, with a few outbursts sounding more like sobs.

The eulogy was read by my generation (those of us who thought we could keep ourselves composed). I have problems with public speaking at the best of times, but trying to hold back tears while speaking is not something I was prepared for. At my father's funeral, I had planned on singing "Angel" by Sarah McLachlan, but I couldn't even stop crying long enough to speak. I was such an emotional wreck I had to stay in the "privacy room" at the funeral home through his entire service. The song was played though, from a CD. For my grandfather's funeral I volunteered to sing "Angel" and I managed to keep myself composed until the song was over.

I was thanked by many people, and told that my father would have been proud of me, and what a beautiful voice I have, and the courage it took, etc... But all that mattered to me was that I helped with the grieving process. Mine and others. Since my father passed away, and even before then, I've been singing as a stress relief. It really helps me. I am at peace with my grandparents passing, as they were at peace in the end. But my father was too young, and I still have not found closure.

On a different note, this was the first time I've seen this side of my family since Christmas. Some of them I haven't seen in years. It was hard to watch them adjust to the new me. The broken me. Until my one cousin finally got the hint that it's better to laugh with me and at me than it is to feel sorry for me. She gave me a new nickname: Dropsy.

I explained all of the ins and outs of my issues, and the lack of knowledge among my doctors, and the fact that I'm still awaiting a diagnosis for a pretty serious problem. Over the course of 2 days I was asked by many people how I manage to do it. How I manage to keep my "happy face" on. How I manage to not cry (often), or complain (much), or give up (completely). Truth is, I don't even know... But I feel the breaking point is near.

On yet another different note, I FINALLY finished my hubby's sweater!!!!!! I started it in ... November? I think...

No More Mondays PLEASE!!!

Yesterday, I got to work only to find out (by e-mail) that my Grampa had a heart attack. Add to that the ridiculous stress of Mondays where I work, combined with catching up the employee who was away last week, and the leaky-eyed-rag-doll I've been lately, and it was not a good start. I left work half way through the day to go visit my Grampa in the hospital. He is 2 and a half hours away. Got to the Hospital, went in to see him, and he looks like death. I mean, he looks as though he's got a few more days at best. His doctor says his prognosis is "10 hours to 10 years" which is completely useless as far as information goes. I visited with other family, and went back to the hospital later in the evening to let my Grampa know I'd be back in a couple of days to see him. He was heavily medicated, and in a very deep sleep at this point, so I kissed him on the forehead and told him I loved him. Then I went home.

I may not get another chance at a goodbye.

While he was still lucid, though, before the morphine kicked in, he was the wise-cracking smart Alec he's always been. Said he had the heart attack "while frolicking with a lady on the mountainside." He's in good spirits. He seems to have accepted his fate with no fear, no regrets. My only hope is that he's not in pain for much longer. In the last 4 years, he's lost his youngest son (my dad), and his wife. I'm sure they're waiting for him on the other side, and I'm sure he knows that.


Facing my family, which lately only happens for Christmas, weddings and funerals, with all of my new health issues, was not easy. I had a couple of falls, and I gave EDS brochures to my cousins, and updates on my health. It felt selfish... Talking about me... Like I don't deserve their support with my Grampa in the hospital.

While I'm being selfish... The Clonazepam finally seems to be helping with the twitching. I find lately that it has been significantly reduced in frequency... But when it does happen it hurts more and more (I'm talking severe 9/10 pain levels by the time I get through the day). I'm also having more core stability issues, and I'm still falling A LOT. The Clonazepam-induced depression is not helping me cope with my Grampa's illness, or anything else for that matter. I don't think I can cope with much more. It's like the straw that broke the camels' back. I'm beyond that point, but the universe keeps piling it on. Like Friday... I went to clean my glasses, and they snapped in half, so I'm stuck wearing my contacts DURING ALLERGY SEASON until I can find the time and energy to go have my eyes tested, and pick out new frames, and argue with the sales staff until we reach a mutually beneficial arrangement...

On the up side... My roommate is finally back home, and she said she would cook chicken tacos for supper tonight. No more Pop Tarts and take-out for me!

2 more weeks until I can see if I can try a different medication, or (preferably) get sent for more tests. I need answers, I need solutions, and I need support.