Tuesday, February 23, 2016

It has been a while, I am a slacker.

I suck.  I have not been keeping up on my blog, but mostly I have had nothing interesting to report. However since February 29th is rare disease day I figured I needed to get a post up before then.  I have for the most part been storm free for about 2 months? My pain levels have been manageable.  Tonight I hurt more than usual but such is dystonia. Lets call it an 8, it has certainly been worse but I woke up aching really bad this morning.  

The Xyrem (GHB) came in the mail last week.


I have gone through a roller coaster of emotions because its exciting and terrifying all at once.  I am On anti-depressants that cannot be taken at the same time as the Xyrem.  SO... that is the most terrifying part.  Mood stabilizers have been a life saver for me for the past 7 years.  I worry.. And Of course when I worry my OCD kicks in and then I can think of NOTHING but disaster :\  Heh.  Last Friday the nurse called and said that we would probably start the trial on the doctors hospital days (Tuesdays and Fridays) so she thought we would be starting this Friday.  The nurse I was speaking to was the one I always talk to but she said she wouldn't be in this week that I needed to call is other nurse if I didn't hear something on Monday, and I of course did not.  So I called today to find out what the plan was and the current nurse looked on his schedule and I am not in the hospital schedule for Friday.  She didn't even have any notes about the drug trial.  I was really annoyed this afternoon because it is these moments when I feel like because I am one of so few that the doctors really just don't follow close enough attention because they don't know what to do.  It feels like really bad practice to not be following the patient you are putting through a drug trial more closely and following up with her when she is starting and have some details at least.  The drug companys nurse was the one that told me I would have to stop my anti depressant because of interaction.  My doctor and nurse were completely Unaware of it until I brought it up.  So again I state that terrified part.. this is why.  I know I am a guinea pig... but sometimes it would really be nice if they didn't treat me like one.  Maybe if they at least pretended to know what was going on I would feel a little more comfortable.  I have done a TON of research on my own, google is amazing.  So I kind of know what to expect, but it is all a guessing game.  






7 comments:

  1. ALL THANKS TO DR WILLIAMS WITH HIS HERB MY WIFE WAS COMPLETELY CURED FROM DYSTONIA.
    Is my pleasure to comment on this site and i thank the admin of this site for his/her great work so far.one of the happiest moment in my life was when the doctor confirm that my wife is been free from this illness. this awesome moments makes me the happiest man on earth, I really don't know how to thank DR WILLIAMS for helping my wife get cured for over how many year of suffering from dystonia. i came across DR Williams contact through a headline news on internet about how DR Williams help a woman to get cured of her dystonia and so many other with similar body problem ,i contacted him and he told me how to get his herb,few day later he sent me the herbal portion which my wife take every morning for 28 days, and his medicine was able to cure her completely from dystonia. and now she very mush okay without any side effects whatsoever, If you have dystonia, you can contact him on his email address drwilliams098675@gmail.com for advice and for his product.

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  3. Thanks to Dr Williams I am so mush happy today, I have been suffering from dystonia for the past 8 years now, and i have spent a lot on western drugs which has all proved abortive, i have tried all means in life to become dystonia free , but there was no answer until i decided to try herbal solution and i found Dr Williams online and i contacted him and after I took his medication as instructed, i am now completely free from dystonia within one month of usage, i am so much happy, thanks to Dr Williams for helping me get my life back again without any form of crisis, i promise to tell your name and good deeds to the whole world,if you have dystonia you can email him on drwilliams098675@gmail.com for advice and for his product.

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    Replies
    1. Thanks for your good recommendation to Dr Williams, am now also free from cervical dystonia after using Dr Williams medicine.

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  4. ALL THANKS TO DR WILLIAMS WITH HIS HERB MY WIFE WAS COMPLETELY CURED FROM DYSTONIA.
    Is my pleasure to comment on this site and i thank the admin of this site for his/her great work so far.one of the happiest moment in my life was when the doctor confirm that my wife is been free from this illness. this awesome moments makes me the happiest man on earth, I really don't know how to thank DR WILLIAMS for helping my wife get cured for over how many year of suffering from dystonia. i came across DR Williams contact through a headline news on internet about how DR Williams help a woman to get cured of her dystonia and so many other with similar body problem ,i contacted him and he told me how to get his herb,few day later he sent me the herbal portion which my wife take every morning for 28 days, and his medicine was able to cure her completely from dystonia. and now she very mush okay without any side effects whatsoever, If you have dystonia, you can contact him on his email address drwilliams098675@gmail.com for advice and for his product.

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  5. I am Shelley from Los Angeles,California, I want to testify on how i got cured from cervical dystonia, I have suffered from cervical dystonia since the year 2011 with so mush pain,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the constant muscle contractions and pain , until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including dystonia, at first i doubted if it we be able to cure me, but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from dystonia just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from dystonia you can contact him through his email on drwilliams098675@gmail.com for help.

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  6. Dear FRIENDS,
    now i have a beautiful smiling face and so are which you all, after reading my testimony. My name is kate, I am 31 years old,
    And i live with my husband in Belgium, but I am from UK. I was diagnosed in 2012 with cervical dystonia. Doctors told me this condition was forever. I know how you feel and what you are going through,  I just want to tell you that I am cured now,with the help of doctor williams herbal medication, the last time I can remember having cervical dystonia was in the summer of 2016. It was a long and difficult process but I am so thankful to dr williams I don't have it anymore. Please know you can be cured too. Accept what happened and is happening to you, forgive, let the past go, love yourself and others unconditionally and be thankful. Everything happens for a reason. If you want to get in contact with dr williams and share your own testimony and thoughts feel free to e-mail him on; drwilliams098675@gmail.com for advice and for his product.

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