So it has been a while since I updated. Sorry for that. Thank you for the new people who are reading from twitter! I know I also have requests for a video update. I will soon I promise. I just haven't had the heart to do one lately. I will though!
Its been a roller coaster of emotions and I had a breakdown today. The GHB does work its not super noticeable.. but it does work. Unfortunately it is not without serious side effects. I have become increasingly depressed and riddled with anxiety. Even with increasing the anti-depressants. Also.. I have significant lapses in memory right after taking doses. That is not only sad but also alarming.
Theres been a few days things have happened and just a few hours later I have completely forgotten them. Not small things either. Also the deep muscle spasms have been worse lately. Sometimes they wake me during the night, I need my sleep so this agitates me.
I feel really Defeated today, this was really promising.. and it breaks my heart to have yet another failed drug. I will see the doctor on the 6th of to discuss what to do next. I really want to push the ethonal Pill I think its my best option. If not.. well I may give up treatments all together. Maybe I am trying to change something that just isn't meant to happen? I can instead just focus on pain relief or some junk.
BLEEEHHHHHH Today has been rough and its really done a number on my hope and my heart.
But I am still alive, I still have people that love me... and I am sure I will get my fight back.
Just.. not today.
This is My story about living with Myoclonus Dystonia. (also called Myoclonic Dystonia) I hope to educate people and help others out there struggling with some form of Dystonia Particularly the very rare types. I want them to know they are not alone. Building awareness and community. I also want to Help friends and family better understand my thoughts and emotions behind this.
Tuesday, April 26, 2016
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