Just Whining...

[firewatcher]

Sorry guys,

I had my thyroid ultrasound yesterday and it was....normal, no nodules-nothing. I guess that's good. Now my neuro wants to change up my medication by adding Lyrica as well as (not instead of) Klonopin. My PCP is not happy with my bloodwork and had me do it again because he thinks I'm "dehydrated." Where is my stabilization period they talked about in November, where are my 6 months?! Pilates helps...the day after. The WHOLE day immediately following my little torture sessions, I can't think straight, I'm exhausted and missing steps and dropping things......

WHhaaaaaaaaaaaahhhhhhhhhhhh, sniff, sniff (oh and the kids are sick) why won't they all leave me alone?!?!?!?!?

Have any of you "dropped out" for a while and NOT returned your doctor's calls? Are you glad you did, or did it make things worse?

I know I should be willing as long as they are willing to look, but I'm TIRED of this. I've been poked, prodded, palpitated, stuck, scanned and challenged and all of this has shown them very little. If you look at my labs alone you'd say I'm just a dehydrated, altitude-dwelling eunuch body-builder.

[Guest tearose]

Well, my doctor never calls that I don't answer. I try to see him less but I will phone in with any change in symptoms.

If you are able to manage your symptoms you should be allowed to go on and live your life. In my opinion. Speak with your doctor. If you are unable to manage your symptoms then go back sooner. I am on a every three month revist schedule now.

Do you feel you are managing well enough?

best regards,

tearose

[mkoven]

that's a hard one. I sometimes just want to put all the medical stuff away and resume more of my nonmedical life, it is so frustrating, esp because it sounds like the causes of your symptoms are complex and not textbook--like a lot of people here! I know I need to sty proactive about getting medical care from my current docs and/or seeking out other docs. but I think it's okay to take brief breaks from it all-- and the length of brief depends on your situation. For me, I start feeling like I'm avoiding if I go for more than a couple days without following up. And if there's something new, acute, or flared going on, esp. if it's potentially serious, then that's even too long. It really helps if you have doctors you like/trust. Since coming to DC on sabbatical, I've been shocked/thrilled by how much more responsive my doctors are. My local pcp schedules hour-long appointments for his ans/eds patients, never rushes me, and respodns to calls or emails within 24 hours himself. Having responsive dotors makes me feel less like just screaming and wanting to avoid it all. I think it's not that my doctors in Illinois didn't care, but were caught up in bureaucratic systems that just made them less responsive. (Returning to Illinois this summer and losing the good team I've assembled here will be VERY hard. )

[MightyMouse]

You have a doctor who CALLS you????? !!!! OMG that's pretty awesome.

As for "stabilization period", was your doc saying that your dysautonomia would get better??? That is a dubious statement and depends on what form you have and how you sick initially. Only those with a post viral onset have research showing that some will get better over time.

Nina

[firewatcher]

OK, when I got back from Vandy, my PCP, endo #1, and neuro decided that I needed 6 months to "stabilize" on my meds. They said nothing about it getting better, just that I needed to stay on the meds that made me feel better for six months.

Endos #2 and #3 disagree with the DI dx and said they would call Vandy for confirmation (I never heard back and thought they were satisfied.) I started Pilates to try to "re-condition" myself and began having extreme fatigue afterwards (NOT normal for my pre-crash post-exercise response) so I asked my PCP, who sent me back to the neuro, who sent me to another specialist, blah, blah, blah...

Then, out of the blue, endos #2 and #3 send this letter about thyroid nodules and schedule an ultrasound and ask for blood-work. My PCP doesn't like the blood-work so he asks me to repeat it and here I am.

I was stable and feeling almost normal on my meds before exercise, and I would quit Pilates if I was not seeing improvement on the non-Pilates days.

I have TWO doctors who call me back! My sleep doctor (an absolute gem) and my PCP (another keeper!) I think that everyone is trying to find an explanation and I am finally satisfied without one (now that it seems like there is nothing wrong that will actually kill me )

And NO, I am not ACTUALLY a eunuch, don't live on a mountain or lift weights anymore.

[Ernie]

Hi,

For the past 8 years I have never stopped pushing doctors and other professional to get diagnosis and treatment. Now I am so tired of going to the hospital 4 days a week that I stopped going to the PT and another professional last week.

After I will have gone to Mayo I will stop investigation and start living my life with the limitations I have.

[ramakentesh]

'Have any of you "dropped out" for a while and NOT returned your doctor's calls? Are you glad you did, or did it make things worse? '

Actually my doctors rarely return my calls and my GP even suggested that Im probably 'on my own' with this one...

[all4family]

Hi,

I just want to say I understand how you feel. I thought that IF I ever got a diagnoses that would be it I would take something or have a surgery, and go on with my life. So I got the diagnoses, and threw myself into "feeling better". I was going to do everything I could to just make it go away. I have a appointment for a EGD, but have to wonder why I am doing it. Then I got the information that they still had to rule cancer out. I went for 5 years being rejected from doctors, so I gave up on them. And I completly understand what you are saying about "now that it seems like there is nothing wrong that will actually kill me". I don't want to have something that will make me feel this bad for the rest of my life, but I don't want to have something that will kill me even worse.

I did stop going to doctors, but it was before I had even heard of this disease. It was relieving for me in the sense that I wasn't worried about their oppinions, or the procedures. But in another sense it was stressful because I knew I had something making me very sick, but I didn't know what. I always worried that by the time whatever it was making me sick 'showed itself" it would be too late to do anything. So there are somethings that I think were positive, and some were negative. I still don't have a regular doctor at all. My local ones are the ones that were very unkind to me, and I can't bring myself to find one.

I really hope you find a happy balance in your life. I think the hardest thing about having a chronic illness is finding a balance in your life with the medical side, and still living a life. I think someone who has not been chronically sick does not understand the balance that goes into it. They will sometimes say things like "just quit thinking about it all the time and you will feel better". They don't understand how hard it is to "quit thinking" about a body you have to live in 24 hours a day. When feeling good (if you are so lucky) you want to run screaming from the medical establishment, and leave them behind. When exhausted from all they do to you, you want to crawl away and hide from them just for a break. But when at your worse you (probably reluctantly) seek them out in hopes of feeling just better enough to withstand another second. And the worse part with this disease is how much can they really help? A lot of it is withstanding the bad, and just get through until you feel a little better.

Take care of yourself, and I hope this problem just finds a way to balance itself out for you. You have enough on your plate to deal with without adding these stresses.

Suzy