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hello and thank you for being here..i'm new to the site and have been diagnosed with MCTD (which was originally dx as lupus) sjogren's and other chronic various things, like daily migraines for the past 20 years, etc.

i feel like i have a good "team" of doctors (rheumy, cardio, neuro, endo etc) but all that they can give me is driving me insane! my "case" is on the wait and see list.

i'm sure you've heard it all before and i should be very grateful, well i am grateful, that i don't have any major organ involvement, which i chalk up to a "yet".

with all of the rotating symptoms (ie one week i'll have shortness of breath, the next month i'll have tachycardia and then there was the week i spent in the hospital with asceptic meningitis, etc.) i feel like a sitting duck who has to wait and see what develops.

emotionally i'm not doing well. i don't like to feel out of control:rotfl: who does really? i feel like a hypochondriac and a big baby. doctors feel free to blame my anxiety disorder. believe me, i know when i'm having a panic attack! my tachycardia is not a result of anxiety! and doctors feel free to tell me i have a "mild" case of lupus if it is lupus...but oh my goodness, there is nothing mild about my symptoms, i can't even work! is it me? shame on me! i know i'm hyper tuned into my body probably b/c i have never felt healthy or been able to keep up with peers my whole life but still i feel like a sniveling baby.

i think i'm in this in between place of knowing in my heart how badly i feel most days and fearing no one believes me. this has been going on for at least 6 years.

i know i sound negative, and of course things could be so SO much worse for me. it just feels like i'm waiting around for lung and heart problems and there is nothing i can do about that...like i could spend any random week in the hospital not being able to breathe....huh, just waiting to see.

does anyone have a suggestion for threads i should read and participate in that would be of support?? is there anyone else out there who feels like i do?? i don't hear any whining on this website, am i gonna get banned immediately?? i promise to behave i just needed to tell someone who understands how scared, i am sitting here like a duck!
 

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I have felt much like you - felt like I was just waiting around for the other shoe to fall, ax to drop, etc. It's easy to feel that way when one thing after another goes wrong and the doctors don't seem to have any answers as to how to prevent it or how to get it better, sometimes not even knowing what it is that's wrong!

You won't get banned for anything in your post - we do all have commiseration parties every now and then too ;) Sometimes, it's something we need to do. It's reasonable to feel that way sometimes, and very reasonable to want some understanding ears and words coming back to you.

What I did that helped me was seek out cognitive behavioral therapy from an expert counselor who worked nearly exclusively with patients with chronic pain or medically ill patients. She taught me a lot about new ways to think about things, including how to mentally process and think about and act on my own pain. It can be a bit like post traumatic stress disorder reaction when you get a new pain symptom coming... which can trigger a series of reactions which can make pain worse and also lead to more anxiety/panic. There's too much to go into online here, but it's something I would highly recommend pursuing especially if you can find someone that works a lot with pain patients.

Are you on a set of medications that are appropriate for your diagnosis and symptoms? Something like Plaquenil or Imuran, NSAID for pain, etc.? If so, then you're doing all that you can do to prevent things from worsening and that's what you have to focus on.

(((hugs))) Good luck and welcome to the site!
 

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A sitting duck; deer in the headlights; "sense of impending doom"; waiting to be blindsided; waiting for the other shoe to drop: a lot of us know just what you mean.
This site has an excellent Search facility that should allow you to research any aspect you choose.
May things improve for you soon.
Douglas+
 

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Agreed with the others... I've felt like t hat too, I feel like that now. I am afraid to get help b/c the sting of "it's nothing, don't worry" is still fresh in my mind despite it only being a few doctors over 10 years ago.

They taught me not to trust myself and my instincts... and so, I worry... a lot & don't always get the care I need...

I feel like ICKY right now, fever, pain, fatigue, can't eat/drink... and still, I'm more concerned w/how to get the house clean and finding a new job and moving and holidays... what if I had to stay in the hospital? There's no one to help with those things... I can't be sick... not an option.

So, I think you'll find a lot of people here get that... I've been noticeably sick and symptomatic for 13 years (i'm almost 30) so this is how I've grown up... and give yourself a break... unlearning things you "grew up" believing can be really difficult.

Take care and welcome
 

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I'm travelling in the same 'circus' as you Weneego ... not a whole lot of fun.
All I can say is hang in there , you are not alone, and hopefully someone will come up with something to help you cope better.
Me ...it's a up and down battle , but thanks to friends and pets, and the internet there seems to be fun moments in most days... and that helps alot.
 

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:eek:Yep, deer in the head lights, sometimes like a poor possum who has decided to play dead in the middle of a four lane highway---playing possum is no defense against cars running over you. Just keep letting the frustrating feelings and issues out, ask for support when you need it and hang in there.....you're in my thoughts.
 
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