DeafEskie's Journal

Don't know whether to growl, laugh, cry or scream.  Seriously.  I am starting to hate that bipap with a passion. I am gonna try to use it again tonight but I am sooo ready to just throw in the towel. When I used the Restoril for one night.... It had Z E R O  effect. (I used it without machine for one time to test). I mean nada zip. I feel I am already doped up enough with all my meds... don't need another. Am frankly sick and tired of doctors piling up MORE meds on me.  I so badly want to go to a holistic doctor--homeopathic--here in Houston. BUT the turkey does not believe in taking insurance so he does not take Medicare or Medicaid and I am too poor (literally--below poverty level) to even pay him out of my own pocket.  To top all that off hes way on the south side of town near Katy--thats a good 45 mins from my house. GRRRR.  SIghs.  Mom and the direct care staff keep saying go to doctors....they don't UNDERSTAND---MEDICAL DOCTORS ARE TRAINED TO JUST PILE U UP WITH MORE DOPE!!!!!!!!   I see people get cancer every day. I sure do NOT want to be one of them because my body is getting so POISONED by all these medications.  If it were up to me, I would stay on the following meds:  

1.  Methadone--change to Tramadol (maybe? we are supposed to do this next month).....2.  Humira (injections for my Psoriasis & Psoriatic Arthritis) 3. Provigil for Narcolepsy and OSA sleepineess 4.  Change out Levoxyl for a natural thyroid supplement 5.  Talconex for my Psoriasis  6.  Spironolactone, dump the Torsemide...7.  Keep booster dureitic as PRN only 8.  Zanaflex for the fibro/muscle issues  9.  Xalatan for glaucoma, 10. Other eye drop for glaucoma  11.  Potassium  12. Vitamine D as thats important for chronic pain.   13. Align for IBS

 So this means I would be dumping Torsemide, Nexium, Singulair, Advair, and POSSIBLY even the Potassium as that is a MAJOR contributor to my acid refulx..and Gycolax which is what I had been using for IBS issues but am dumping as we speak.  SUre would be nice if I could dump even more but I so DOUBT it. I have way too many health issues....and now I am supposed to deal with this bipap every night?????!!!!!!!!!!!!!!!  They say that using that bipap would eventually get me off of the durietics and potassium. Sometimes I feel that the hyperaldestronism is a whole seperate issue because my paternal grandfather had that rare disease--gigantism.  Only so many people in the world have that....and thats too close in relation for comfort, LOL.  Plus NOBODY knows all the TRUE effects /late manifestations of Congenital Rubella Syndrome. This is my BIGGESTTTTT bee in my bonnet or peeve.  The government is not giving A N Y  funding for research. There are THOUSANDS of us Rubie babies that are now hitting middle age with a ton of health issues. Some people say it is not the CRS that hereditary factors come into play. I STRONGLY disagree with this. I so badly want to start a non-profit organization that would educate people about CRS...AND advocate for the research to be started yet again.  I guess I should be writing to Obama and tell him of this serious problem in his country that NEEDS some attention to. Us rubies are becoming the "forgotten ones". Sigh. I try to tell professionals about my idea and I either do not hear from them or get ANY  support at ALL. Its no fair. I can't do this alone--I have 15+ diagnoses. I am gonna need HELP with this big time. And I am not a famous star like Le Ann Rimes that has plenty of money to pour into the dang project.  She is my "idol" of sorts--she has my name AND the same skin disorder!  

In addition to all of the above I am supposed to be going to the gym three days a week. My direct care staff.... she isn't tooo organized or time efficient. And shes a tiny bit lazy. But I love her to pieces--she is a family friend of many many years. I am thankful she even is working for me because....I have issues with STRANGERS being in my home. That is part of my BPD--borderline personality disorder......

I suppose I need to list every single diagnosis so you guys can fully understand the challenges I face.....

Deaf-Blind since birth Congenital Rubella Syndrome/CRS

Borderline Personality Disorder/BPD (in remission)

Glaucoma

Psoriasis

Psoriatic Arthritis

Schuerman's Disease/Kyphosis 90 degree curve cervical spine

Hypothyroidism

Narcolepsy

Obstructive Sleep Apnea

Premature Ventricular Contractions

Hypokalemia (low potassium)

Low vitamin D (newest issue!)

Osteoarthritis/degenerative arthritis

GERD/Acid Reflux

IBS-irritable Bowel Syndrome

Endometrosis (was removed 2003 with a deformed uterus)

Fibromyalgia/Chronic Myofascial Pain

COPD/mild empheysema (sp) in addition to severe seasonal allergies. 

Feel like I am forgetting something.... but you guys get the idea now....so now I think you can understand why I am reluctant to accept the bipap and using it and so on.  I have had sleeping issues for a lifetime ever since I was a little girl--always a night owl. Even if I go to bed, I always wake up several times in the night. I am NOT alone in this. Majority of individuals that are CRS adults have this same problem so it is obviusly a "Rubella late manifestation" we have to deal with. Very few of us actually sleep like "normal people". LOL. 

Sorry was such a LONG vent, but I needed it.