broken down

Post Reply New Topic

I think I hit a wall. For a little over a year, I've been trying to deal with a variety of health problems that seem to be autoimmune, but haven't been able to get a clear diagnosis. Some of the doctors I've seen have thought it might be Sjogren's Syndrome (http://www.sjogrens.org/home/about-sjogrens-syndrome), but so far my tests for antibodies have been negative. They've found some weird stuff in my bloodwork, but nothing that definitively says I have one thing or another. So, it might be that or it might not.

Sjogren's is hard to diagnose and it's actually typical for people who do have it to be stuck in limbo without a diagnosis or treatment for several years, but I've been treated like a mental patient by several doctors who implied it was all in my head when my bloodwork came back negative. I recently learned that there was a mistake in my medical records and they had me listed as taking several psych med's that I do not take and have never taken, so I think that colored their judgement and idea of me. I can't imagine they talk to all of their patients the way some of them have spoken to me, but maybe I'm wrong.

It's been difficult to have to deal with an emotionally draining full-time job, plus deal with my medical situation, which, honestly, feels like a second job, when I've been having unpredictable flare-ups of debilitating symptoms that make it hard to function normally and take away your quality of life. Even on 'good days,' it can be hard to get out of bed, though. I also live alone and have very little support from family and friends, which makes everything that much more difficult. So, I know I need to do something, but I don't know what.

It would probably be good for me to be evaluated at a Sjogren's Clinic where they have knowledgeable specialists, but it's not easy to be accepted as a patient at one because they have so many applicants. And, there aren't any within easy driving distance, so it would be hard for me to actually get there. (I don't navigate freeways or major cities well as it is and, depending on what they may want me to have done while I'm there, I might not be in the greatest shape to be driving). I asked a friend and my mother if either of them would be willing to give me a ride there and both turned me down. So, that hurt. There are others I could ask, but I really hate the idea of even seeking a second opinion anyway, after the way I've been treated my doctors over the last year. Just the thought of seeing more doctors stresses me out.

This last flare, which I'm still in right now, has been so bad that I've become worried about what will happen if I continue to go downhill and I can't keep my job, though. Without any sort of diagnosis, it's not like you can go on SSDI and I don't know where I'd go, if I couldn't keep a roof over my head. So, even though I want to think I'm a long way from that happening, it's still scary. Frustrating, too. I've worked at a social services agency that helps people with chronic medical conditions the past seven years and have helped hundreds of people, but when I need help, I feel like I can't get it. And, it's amazing how quickly friends and partners disappear when you stop serving a use for them. Even family, too. My favorite movie has always been It's a Wonderful Life and I guess I really was naive enough to buy into the idea that if you consistently did the right thing and helped people, it would eventually come back to you. I hate to say it, but I'm starting to feel bitter and short-changed, since it hasn't really been going that way for me these days.

For a while, the way I've been getting through day-to-day has pretty much been with a mind-over-matter approach. I don't like sounding like a martyr, but I've been through a lot more in the course of my life than most other people I know and, as a result, tend to be pretty resilient. But, a few days ago, I just snapped mentally and emotionally. So, the toughing it out and compensating for feeling physically miserable with positive thinking thing has not been working. At all. I've been having cyclical bursts of crying (or when my eyes are too dry to cry from the Sjogren's or whatever it is, these sort of dry sobs that have been pretty weird) and trouble doing anything, between the physical stuff and the sudden onset of depression that just hit me like a ton of bricks.

I don't want to kill myself, but I also don't want to keep living the way I have been. And, right now, I kind of feel like I'm already dead anyway or, at least, that the person I was before I got sick is long gone. I feel like the whole trajectory of my life has been screwed up. Before this hit, I'd wanted to go back to school for my Master's, find a good long-term relationship, maybe even start a family. I had goals, but now I'm not in shape to accomplish any of them and feel like I've given up control of my life. And, I feel like a horrible person for admitting this one, but I had a cancer scare recently and when I learned the mass they'd found was benign, my initial reaction was disappointment before the relief set in. I think I really am tired of life right now.

I'm sorry, I'm kind of embarrassed to even be posting this. I feel weak and like I should be able to work through this, but I'm burnt out and overwhelmed and I don't know how. Any advice would be appreciated. And, if you actually read through all of this to the end, thank-you just for that.

sounds like you really need to get to the specialty clinic. not all docs are jerks. pay someone to drive you if that's what it takes.

my sister-in-law has lupus. they thought it was fibromyalgia for a good while before her blood work became positive. immune diseases are tough to deal with. sorry you are going through this.

just because you are sick doesn't mean you have to let go of your dreams. I became disabled and lost a medical career in the '90's. thought my life was over. I got married five years ago to a person who also has an illness. he's a sweetheart and we are happy. I work part-time as a social worker.

you may have to slow down or shift gears, but don't give up.

GOSH! I had no idea things have been so brutal for you lately.


In the short term I'd recommend curling up with a pint of Ben & Jerry's (you cannot be sad while eating Phish Food) and watching something very silly on TV.

Longer-term I really do think you should find a counselor who specializes in CBT to help you develop some coping tools. CBT is really effective for depression, usually.

I hate to say it, but it might take you a while to get your other medical issues sorted out. Autoimmune diseases are really slippery and hard to detect sometimes, and it seems like most doctors don't really care to figure-out the hard problems.

I was diagnosed with everything from ankylosing spondylitis to bone cancer before my legs stopped moving and I checked MYSELF into the hospital...

The surgeons are great at chiseling hunks of bone out of my spine, but nobody can tell me why all the joints in my body are trying to fuse together.

Doctors....

Hang in there. Some good ice cream and a decent counselor can help make life bearable until you find a good doctor and get it all figured out.

And you WILL get it figured out.

Thanks, guys. I appreciate your advice and kind words.

Yeah, at my last visit a few months ago, my rheumatologist suggested I might have fibromyalgia, at least as a secondary diagnosis to something else that he couldn't pin down. But, he subscribes to the theory that fibro is not a 'real' disorder and suggested in a very condescending tone that I see a psychiatrist. I don't have widespread muscle pain and do have a lot of issues not typically associated with fibro, but I think he just felt the need to put a label of some sort on me. I never went back.



That's great. I'm happy for you and your husband.



Oh, yes, I remember all of that. They can put a man on the moon, but they can't figure out what is wrong with us?