Be good.
Be patient.
Be in the moment.
~MissNikkiAnn
Showing posts with label Mystery Illness. Show all posts
Showing posts with label Mystery Illness. Show all posts
Thursday, May 19, 2011
Wednesday, May 18, 2011
Tuesday, May 17, 2011
Sunday, May 15, 2011
Dr. Anne McIntyre Interviews the boy Wessely had sectioned.
~"Do I have to die to prove how ill I feel?" (Quote taken from video)
That question is still resonating with me. My gosh!!!
Thursday, May 12, 2011
Saturday, September 12, 2009
Hello There! You're Still Here? Whoa!
So...I'm just noticing that people actually come to this blog, even though I very seldom view it. I have all of my other accounts linked so that anything I post on the other sites comes here for viewing. But I never realized that folks actually view this stuff. LOL! I love y'all for that! I have THE BESTEST (yes, bestest) family and friends.
Anywho, now that the cat is out of the bag all around, I just want to officially inform the folks who don't know that I am ill. I've been through a lot over the last three (plus) months. Been to the emergency room 3 times for TIAs (mini-strokes), have a long list of doctors:
--Primary Care
--Neuro-Opthamalogist
--Neurolotist
--Hematologist/Oncologist (same guy)
--Dermatologist
--2 Ear Nose Throat doctors
--Anaesthesiologist
--Psychiatrist
--Psychologist (yes, both psychiatrist and psychologist! LOL)
--Rheumatologist, and
--OB-Gyn (yes, she's involved in the diagnosis and treatment).
I can't quite figure out if I'm missing anyone from that list, but I have a great team of doctors. The only doctor who didn't want to play fair was my crazy-azz neurologist; so I had to fire him.
What I am dealing with here, healthwise, is being catagorized as a possible autoimmue disease mystery illness. I've had:
--Spnial Tap
--Bone Marrow Biopsy
--Skin Biopsy
--2 Lips Biopsies
--Carotid
--CT Scan
--MRI
--Abdominal Ultrasound
--Breast Ultrasound
--Echocardiogram
--Carotid
--Every blood test possible (even HIV/AIDS, which I don't have, per the results! LOL)
--Visual Field, and
--Gallium Scan.
Now, the Gallium Scan is where my rheumatologist first found the issue, seemed my salivary glands weren't functioning properly; so she ordered a lip biopsy. The first lip biopsy was a failure. My lip was so dry and hardened inside that the rheumatologist who was doing the biopsy couldn't get a specimen. So my main rheumatologist ordered a lip biopsy through an Ear Nose Throat team--these two guys are friggin AMAZING. So this second biopsy had me looking busted and disgusted for almost two weeks now, but at least there was no pain after this one (unlike the first that was painful and wouldn't stop bleeding. I could barely talk for two days.).
So, the results from the last lip biopsy have, indeed, indicated that "something" is wrong. Now, the funny part is that all of my doctors are scratching their heads, admitting that it's a medical mystery. So they're getting together to consult with each other and do some research. Until then, I'm trying to deal with the side affects of the medication they have me on; it's some fierce stuff. They say the medication will take up to 3 months before I start to see results and that the symptoms and side effects will worsen before things get better. And I can attest to the fact that the symptoms and side effects have worsened. But...mom has been monitoring me closely and says that she's noticing subtle improvements, and that's something to be thankful for.
That's it for now. There's a lot more to this story (some of it funny as hell, some of it depressing), but all I do is talk about my illness all day, everyday (I go to a doctor almost everyday of the week and am sometimes double-booked with doctor appointments on the same day; so I get tired of discussing this shit. So for those concerned and wanting to talk, I enjoy conversations where we discuss stupid/silly stuff, not my illness (BORING!)). But it's hard to catchup with me because I'm either at the doctor, feeling too ill to chat, or sleeping (due to chronic fatigue and the medications).
I love you all.
Now I'm off to stop Sir from pouring chocolate milk all over the place. Did I mention how CRAZY he is? Yes, he's crazy! LOL!
My best to you all.
Talk to youz guyz latas!
Anywho, now that the cat is out of the bag all around, I just want to officially inform the folks who don't know that I am ill. I've been through a lot over the last three (plus) months. Been to the emergency room 3 times for TIAs (mini-strokes), have a long list of doctors:
--Primary Care
--Neuro-Opthamalogist
--Neurolotist
--Hematologist/Oncologist (same guy)
--Dermatologist
--2 Ear Nose Throat doctors
--Anaesthesiologist
--Psychiatrist
--Psychologist (yes, both psychiatrist and psychologist! LOL)
--Rheumatologist, and
--OB-Gyn (yes, she's involved in the diagnosis and treatment).
I can't quite figure out if I'm missing anyone from that list, but I have a great team of doctors. The only doctor who didn't want to play fair was my crazy-azz neurologist; so I had to fire him.
What I am dealing with here, healthwise, is being catagorized as a possible autoimmue disease mystery illness. I've had:
--Spnial Tap
--Bone Marrow Biopsy
--Skin Biopsy
--2 Lips Biopsies
--Carotid
--CT Scan
--MRI
--Abdominal Ultrasound
--Breast Ultrasound
--Echocardiogram
--Carotid
--Every blood test possible (even HIV/AIDS, which I don't have, per the results! LOL)
--Visual Field, and
--Gallium Scan.
Now, the Gallium Scan is where my rheumatologist first found the issue, seemed my salivary glands weren't functioning properly; so she ordered a lip biopsy. The first lip biopsy was a failure. My lip was so dry and hardened inside that the rheumatologist who was doing the biopsy couldn't get a specimen. So my main rheumatologist ordered a lip biopsy through an Ear Nose Throat team--these two guys are friggin AMAZING. So this second biopsy had me looking busted and disgusted for almost two weeks now, but at least there was no pain after this one (unlike the first that was painful and wouldn't stop bleeding. I could barely talk for two days.).
So, the results from the last lip biopsy have, indeed, indicated that "something" is wrong. Now, the funny part is that all of my doctors are scratching their heads, admitting that it's a medical mystery. So they're getting together to consult with each other and do some research. Until then, I'm trying to deal with the side affects of the medication they have me on; it's some fierce stuff. They say the medication will take up to 3 months before I start to see results and that the symptoms and side effects will worsen before things get better. And I can attest to the fact that the symptoms and side effects have worsened. But...mom has been monitoring me closely and says that she's noticing subtle improvements, and that's something to be thankful for.
That's it for now. There's a lot more to this story (some of it funny as hell, some of it depressing), but all I do is talk about my illness all day, everyday (I go to a doctor almost everyday of the week and am sometimes double-booked with doctor appointments on the same day; so I get tired of discussing this shit. So for those concerned and wanting to talk, I enjoy conversations where we discuss stupid/silly stuff, not my illness (BORING!)). But it's hard to catchup with me because I'm either at the doctor, feeling too ill to chat, or sleeping (due to chronic fatigue and the medications).
I love you all.
Now I'm off to stop Sir from pouring chocolate milk all over the place. Did I mention how CRAZY he is? Yes, he's crazy! LOL!
My best to you all.
Talk to youz guyz latas!
Thursday, September 10, 2009
Wednesday, September 09, 2009
Tuesday, September 08, 2009
Sunday, September 06, 2009
Saturday, September 05, 2009
Friday, September 04, 2009
Thursday, September 03, 2009
Wednesday, September 02, 2009
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