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Tilo
10 September 2014 @ 06:03 pm
So...I couldn't handle the higher dose of medication. Which is fine...still doing good right now...

But the painful realization that using medication to treat this is only temporary, just like any other movement disorder. Things WILL go back to being the way they were. So the time I have now is bittersweet. I get to live almost sypmtom free for now.

But one day I'll have to stop crocheting again. I'll have to stop drawing. I will need assistance for everyday living.

I'm not ready for that. I'll never be ready for that.
 
 
Tilo
02 September 2014 @ 07:30 pm


I have Cervical Dystonia. Because there is so little is known about it, it took about a year (I was lucky) of searching for get a proper diagnosis. But there is no cure and treatment is hit and miss. Being diagnosed with Dystonia comes with this silent responsibility to get the word out there that this is indeed a problem that needs to be researched. Please sign this petition and help get Dystonia in the spotlight to help make further research possible!
 
 
Tilo
27 August 2014 @ 10:58 pm
So far this medication has erased a years worth of symptoms, its truly amazing!

I just wish the stomach issues would die down. Its ripping my stomach apart....
 
 
Current Mood: Feeling sick...
 
 
Tilo
24 August 2014 @ 11:03 pm
Good day, walking great. Some tremors, some spasms and cramping. Pain is worse than yesterday but still pretty manageable. I have a giant headache and I'm very foggy and tired. Heading to be...
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Current Location: Home
Current Mood: Tired...
 
 
Tilo
23 August 2014 @ 01:49 pm
Quarter to 2pm and the tremors and pain are back...

...it is day one though.
 
 
Current Location: Home
Current Mood: Disappointed, but still Optimistic
 
 
 
Tilo
23 August 2014 @ 12:06 pm
Started Primidone last night. I wasn't expecting it to have such a huge impact so quickly. Within the first 15 minutes my muscle relaxed in a way they haven't in...months? Many months? But then I started feeling pretty tired and VERY spacey. I was pretty disorientated, but my gait was already much looser and it was far easier to walk with out my crutches. I did eat a piece of bread before I took it (my appetite is so crappy), but I ate some more after taking it and didn't feel nearly as weird as I did before. Stayed up with Bear for a bit, but then gave up and went to sleep.

Fast forward to today, I'm sore but not so incredibly painful sore. Everything still moves a lot smoother. My movements aren't so jerky, though I do still feel my hands don't work so well. Still tired, but I am going to try and have a 'normal' day and get things done.
 
 
Current Mood: Content
 
 
Tilo
22 August 2014 @ 11:23 am

So I have cervical dystonia. No surprise there. I will now to take a new battery of test to rule anything else, there is finally forward progress in my health situation.

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Tilo
21 August 2014 @ 02:21 pm
So yesterday started off ok. Decent sleep the night before. I have been taking it easy the last few days as earlier in the week I was pretty shaky and fatigued. Drawing seems to be my only outlet these days as any physically strenuous activity ends in tremors and shaking.

It had been four day since I had dug up a bunch of plants and bushes from my moms new place. She had to remove everything from the backyard as they will be laying new sewer pipes through the back yard, while also digging out the old ancient ones there are still there. The plan was to transplant them at our house. Well..they hadn't been planted yet due to rain and yesterday, day four of these poor bushes sitting out in the open. Bear was going to dig me a new flower bed, as well as dig up my old one to lay some bed liners underneath them to prevent weeds. But he ended up going salmon fishing with the neighbors. Honestly, salmon fishing is usually really good this time of year and whatever food, especially protein/fish, I can get for free is definitely a priority. But that left my poor bushes to sit another day.

So like the stubborn jackass I am I went out there dug holes for them and planted the raspberry and rose bushes, as well as planting other things and lugging around some heavy ceramic pots. Man did I pay for it. Within an hour of finishing up my arms and shoulders just couldn't stop moving. I took some medication to help calm it down, but it didn't help. The tremors lasted for well into the night before they calmed down enough for me to go to sleep (with the help of more medication). This morning I woke up, didn't sleep very well. I almost always wake up feeling hung over (I don't drink) I'm going to assume its the meds. Woke up with pretty weak tremors this morning, body wide, but mainly again in my arms and shoulders. No involuntary neck turn yesterday or today thus far so thats a big yay! But my neck still hurt from the last episode of that.

Some times my head/neck turn so fast and so far (always to the right) that it goes past where I would normally be able to turn my head on a voluntary basis. Which..pulls the muscles in my shoulders and neck.

Slightly comical (maybe I dunno) the last time it happened I was leaning back against the wall at the head of my bed and smacked my face on the wall. BUT it stopped it from going 'too' far, which resulted in a happy face. My husband must have thought I was nuts.

We'll see what today holds, I FINALLY have my appointment with a new neurologist tomorrow after a grueling 3 month wait. I am absolutely TERRIFIED he's going to be just like the first neurologist and dismiss me as some kind of drug seeker. All of my other doctors no something is terribly wrong, I'm hoping this neurologist (who is very familiar with Dystonia) will be my hero.

Wish me luck, I'm so excited and scared.
 
 
Current Location: Home
Current Mood: Nervous
 
 
Tilo
21 August 2014 @ 01:55 pm
I can still be a bad ass and have a cane! Right?

BAWAC
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Current Location: Home
Current Mood: Back to being optimistic
 
 
Tilo
20 August 2014 @ 11:42 pm
Not sure if anyone actually reads this anymore. But I need a place to record medical 'happenings' and to generally ponder and vent. I updated a lot of info on this account. I'm not expecting a huge following on here and LJ itself isn't as popular as it used to be.

But I need a journal of some kind. Writing by hand just isn't happening very well anymore so I decided to switch back to LJ. Its easy to use and I can join in on other communities that interest me. So win-win.

Some entries will be friends only. These journals will be about progress in finding out how to cope with my now laundry list of disorders.

Its been a long long while, and I don't expect everyone to want to stick around. Just a heads up that this journal will be active again.