Sunday, October 9, 2011

Scared - hypocondriac or being my own advocate?

I'm scared for my health.  I'm scared of all of the meds I'm taking prednisone,antidepressants/anti anxiety/stimulant (for fatigue)., and supplements like fish oil and Vitamin D, and  thyroid .. some others as needed).
 I felt like SHIT yesterday (10/8).  Worse than in a long time. Trying to keep a food/med/"how do I feel" journal ... I need to remember to keep it up to date.  I just started taking this new supplement called NAC or  N-Acetylcysteine.  I got the idea from this clinical trial .
I mentioned this to my brand new, young cute pulmonologist  and he told me to hold off .... ugh.  I haven't heard any bad things about it yet. But since I'm feeling shitty, maybe I should stop.
I also noticed my neck glands hurt today, are swollen more than usual.  I never get sick, but with the prednisone, I know my immune system is suppressed so maybe I am just getting plain sick.  I slept until 3PM yesterday!  
Monday I have a follow up with the nephrologist who I'm sure is going to tell me my GFR is still too low.  She retook the test but I'm sure it's still off.  I had especially high blood pressure that day.
When I saw the pulmonologist my blood pressure was better.  Normally, it is on the lower side of normal however, I take adderall and that could be why. On the other hand she mentioned something about blood pressure in the lungs.
I really need a doctor to go over all my medications. I have three red flags when I check the interactions. The doctors see that too. I see it on their screen.  I've been taking antidepressants for 25 years. Nobody ever checked my kidney counts during that time.  Also, I get palpitations. I thought it was the timing of taking the adderall or sometimes just plain anxiety.  But I read something today that a woman was misdiagnosed for 6 years with depression and anxiety when what she really had was a pulmonary embolism.
I'm so confused.  Am I being a hypochondriac, or am I just looking out for my own health, since MCTD is so complicated?

Friday, September 30, 2011

blood results

Many vials of blood taken. Only including abnormal results below

Eosinophils .2!!!! Is that from taking prednisone?
Creatinine 1.3 (known issue, seeing nephrologist today)
GFR - really low. Probably get another "take home 24 hour pee test".

What's really strange, SED rate is normal. That's insane. Maybe the pred again?

ANA Screen With Reflex to IFA Titre
Positive, A

CK or CPK not taken, as crazy as it sounds, since I've been re-diagnosed from PM to MCTD, my muscle enzymes have been normal but the JO1 Antibody is out of control.

ANTI-JO-1 Positive, 3.9
SCL-70 AB,EIA Positive, 1.0, A
SSA >8.0 Positive, A
SSB <1.0 Negative

LOW VITAMIN D!!! Supplementing!

ANA Titer & Pattern
Anti Nuclear AB Titre 1:40 High (it's been MUCH higher than this before)
Pattern: Nucleolar (A)

Thursday, September 22, 2011

My current rheumatologist

Tomorrow I have an appointment with my rheumy. I just received a letter in the mail that effective Dec 3, he is retiring!
This is GOOD for me because I wanted to find a new one anyway. Now I am free to ask him tomorrow how to get an appointment with someone in one of the top hospitals for rheumatology

Wednesday, September 21, 2011

Acetyl Cysteine (NAC)

Has anyone heard of Acetyl Cysteine (NAC)? I came across it when I was searching for Clinical Trials and found a trial that uses this supplement for Interstitial Lung Disease (ILD). I ordered some from Amazon, and the supplement has seemingly raving reviews (mostly for Bronchitis).

Wikipedia NAC
See "index" on page for ILD, etc.

A promising Amazon review. You never know ....

In search of best doctors for Sjogren's, MCTD

Found some good links for starters: 
US News Best Hospitals
Johns Hopkins Division of Rheumatology

Can any readers give me advice on how to get an appointment with a top Rheumy?

Found one .... crap, how to get an appointment with a Physician-in-Chief Emeritus
More on this doc ....

Tuesday, September 20, 2011

Prednisone, inflammation and fatigue, oh my

I've been taking prednisone for the past 5 days or so. A good dose - down to 35 mgs now. My body was so inflamed and my current (alternative) treatment wasn't working. Since I have lots of extra prednisone in my closet (there's a story to that) and it's staved off my polymyositis in the past, I decided to start taking it. Yes, yes, I know the side effects. And yes, I know I have to taper off. And yes, I know I shouldn't be self medicating. My fatigue was SO bad from inflammation I had to do something. Bad enough it put me out of work.

Friday, September 16, 2011

My Autoimmune Disease

A little about me and MCTD:
In the year 2000, I belonged to a gym and had a personal trainer. At one of the training sessions, I was doing squats while holding weights, and I almost threw up. I knew something was wrong. I remember that moment like it was yesterday. Is it possible that at that moment, my body had some kind of negative reaction to these squats I couldn't tolerate?  Gradually I grew very weak.

Saturday, September 10, 2011

Self sabotage, or just some bad habits? And some blabbering about aging of various species

I stay up way too late for someone with a chronic health disease. I also eat way too much at night.  It's a type of coping, but it's not really getting me anywhere.   I eat at night the way I used to smoke.    I no longer smoke! 3.5 years ... I still get cravings. BUT

Friday, September 9, 2011

Step away from the computer!

I just warmed up my dinner and I wanted to eat and finish making this blog look nice, but instead I will not.  I get very hyper-focused and have a difficult time walking away from "solvable things"  ... "I'll be back!!"
PS I love fonts.