Journal

Whines.....man I feel horrible today.  I am starting to wish I had some good days but feel it will all be over fairly soon.  I think I am having a BAD reaction to Tramadol. Took first pill last nite. ALong with Rozerem and two other meds. Woke up feeling like I was sick shaking, pouring sweat, ready to puke.....dizzy, nausea, and much more. It felt like you f eel when you have a really bad flu.  Am not sure if was a reaction but I suspect it because I RARELY have reactions to meds.  I am gong to go back to couch and lay down (not using recliner this time Kimmie....I am feeling so bad I am ACTUALLY laying down on the couch!   Gotta dope me up first then me outta here off this thing and enjoy some TV. Realllly wanted to go to church tomorrow but watch me not be able to make it S I G H.....have missed almost a month of going grrrrr.

   Thats right....i am so ready to just CRY.  And I mean a REAL cry. Thats how FRUSTRATED I am. I don't even know where to start. Just vented it all out on a good friend of mine. Don't really feel like venting it all out all over again....but instead I will write about how I FEEL....

 Tonight I am feeling TIRED, STRESSED, drained, exhausted, frustrated (with Mom), fed up with a  red pit bull that keeps being allowed to run loose all over the darn neighborhood,frustrated with a friend that works with me as my direct care staff not doing all of the things I want her to do each day....and many more things. To make a long story short Mom is a "perfectionist". I am NOT....... I downright feel "trampled upon" or "not listened to"! 

At least ONE good thing today!!!!  That was.... we took Meriko my little deaf-blind Eskie/Bull Terrier/Fox terrier mix to the eye doc today, and she got an "A"!  Does not have to go back again for a year. Just haffa keep on using the same eye drops twice a day. That was the best news I have had in a LONG time.... (Meriko was born deaf-blind... she is a "lethal white" or albino dog....)

 I think I am gonna just CHILL this weekend. And NO I am NOT using the bipap. I am so ready to just GIVE UP on that. Will tell this to the psychiatrist on Monday. I feel need to stop, take a break, step back, then start all over again later. My back hurts, have had a headache all day probably from the extreme heat....and being on the go go go go go...I am just totally utterly exhausted. Will probably just "hide" this weekend. Need time all to myself. I am to the point where I even feel like throwing in the towel on learning new crafts--its just getting too damn expensive....sighs AND I AM SICK AND TIRED OF MOM HARPING ON SO MANY THINGS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!   SIGHS... I need some SANITY people..... could really use some support. I want to succeed in life on things and I am really TICKED OFF that things are taking so long to get there. My direct care aide really made me mad yesterday when she said "you are a LONNNGGG way from being able to work again". I felt like SLAPPING her she had no business saying that. She's not a counselor or a social worker... who is she to judge????? SIGHS.......  Good night everyone... I hope some of you can understand or relate to all this nonsense........                                                                                                                                                                                                                                                                                                                                                                                                                                                                  

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.