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?


  1. My motto is better safe then sorry and in this case we are talking not just about your everyday health but possibly about your life. Go with your gut. If you don't feel right about something then pursue it. Approach your doctors with facts rather then from the emotional side. Yes, I know you have every single right to get emotional but I only tell you this so your docs don't finger you as being emotional and use that as the excuse. Several times I pursued my gut instincts and I am thankful I did. Twice I had bad allergic reactions to medications and not one doctor would listen to me. I almost lost my life. Another time I found out I had two types of thyroid cancers. Had I not sought out a surgeon on my own and insisted he take out my thyroid due to the pain, who knows if I would be alive today. Go with your gut. Just present your case with emotions aside. I do know how difficult this can be but be it must. Hope to read that you have resolved the issue and found the cause.

  2. I was trying to add your blog to follow it on my blog but it says your URL is not available. I have put your blog on my blog but if you go there, you will see it at the bottom because it can't recognize your URL. Not sure how you fix this but maybe you can put a post on blogspots boards and ask for help. Just FYI! If I am having this problem, others on blogspot will be having it also.

    1. Deb, by the way, a year later, I tested out your above comment. I fixed it! I didn't realize I didn't have feeds enabled. It should work now.

  3. Thanks, Deb. I see my blog on your blog. You can just come here, after logging in and in the upper left say "follow".. is that what happened? When I go I see it listed last in your list of blogs.. and when I go to your profile I see it and can follow the link. Not sure what happened?? :) Thanks for the info though .....

  4. Also thank you for your "follow your gut" comment. I am getting fully checked out with my lungs. chest xray, echocardiogram, pulmonary function tests, and next will have cat scan wich will tell alot .... then the same day as the cat scan, I see the pulmonologist, he gets the results right away. He'll have all those test results. I know the chest xray was "OK" and the pulmonary function tests went pretty well according to the tech ...hopefully will find out why I'm short of breath.