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losing control

486 Views 5 Replies 4 Participants Last post by  peonyprincess
hi my name is sherry and i have been here before but never posted !
ok dont know where to begin or to end !
i was diagnosed with posotive ana i have been going to rheumy who i think is good i have been on plaquenell however its spelled , my dr is still doing testing he thinks i have ra and possible lupus ! well i had a hysterectomy they left my ovaries because of my age 36 ok i week after surgery kept feeling of uti i went to surgeon he did a ua the pain got so bad in my ovaries and my back i was keeled over in pain hubby brought me to er they said i had a level 3 uti bladder infection i took 10 days of cipro still no diffrence in pain my primary put me on macrobid 20 days he sent me to a urologist who got all my ua and he said it was all neg i did a ua in his office same thing neg he said he feels i have interstitial cystitis and he said many dr's feel its autoimmune i think i have ibs now since the surgery i cant go to the bathroom normal at all i see rheumy in 2 weeks ! i have been getting flu like feelings low grade fevers and i know it goes with autoimmune i also been having frostbite feeling in my toes and fingers ( raynauds) i just dont know what to relate what to what i feel like im going out of my mind no matter what i do i feel im getting worse i have been on the plaqenell for 6 months i feel like i have gotten worse and i know trauma (surgery) to the body can flare autoimmune but come on this is driving me nuts ! autoimmune runs in the family but i want to stop swimming in the damn gene pool i feel like i keep taking laps and im getting worse ! i feel like when i see a dr ohh its autoimmune they associate everything with autoimmune i have neck problems actual damage and the reason i cant get better guess what autoimmune i feel like slapping them ! i just am sick and tired of being sick and tired!:sad:
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Hello Sherry,
I am sorry you feel so down. You have been through a lot.
Often it can take a while to find the best mix of medication for you. The modern approach is often quite a cocktail! This is still early days for you and there is every prospect things will improve. Meanwhile you have every right to feel fed up with it. We are all here to listen to you and do what we can to help.
Welcome to the Site.
x Lola
Hi Sherry,
Welcome to the board.

I am going to suggest that you keep a journal of what is happening, day by day. I did this at the beginning of my journey with lupus. It helped me to determine what was going on with lupus, or, as you mentioned, raynaud's, or?

Then, when you have your appt with the doctors, go back and review what was going on, and either take the journal, or a summary of what has happened. This way, your doctor will be able to help you best. For me, when I had an unusual reaction to a medication, it helped my doctors know what was exactly happening as my memory was pretty much shot.

Take each day as it comes. Yesterday is gone, tomorrow hasn't gotten here yet, and all we can do is deal with today.
thank you for responding to my post! i know its a long road ahead ! im just trying to cope with one thing and then something else is added to my plate and im feeling very overwhelmed . but i know im not alone so that makes it better ,my mother had lupus and she passed away with complications stemming from lupus she had a leaky heart valve she was only 52, i seen what she went through but you never think it will happen to you when she died 3 months later i was ana posotive that was 7 years ago but with in the past 2 years its been getting worse ! but thank you again for letting me vent !
i like the idea of the journal because i do forget when im there in the office my mind goes blank and i feel like i cant explain verbally for my dr to have a better idea of whats going on i feel like he looks at me like im weird i know hes not but thats how i feel!
so thanks ! i love the quote you have im going to have to write that down or i will forget what it said lol! thank you again for your idea !
Hi Sherry. I'm glad that you chose to post your frustrations and your fears, all of which are completely understandable. It never fails that Murphy's Law of everything that can go wrong will when it comes to autoimmune. I had a hysterectomy in 2005 at the age of 36 as well but I put my foot down and had them take the ovaries as well, for my own piece of mind. I then developed an abscess and had to go back to surgery two different times to drain it and was in the hospital for an extended period of time. During my hospital stay I went into a flare of course as well as a variety of other problems that actually almost cost me my life. The saying "this too shall pass" usually does. What I find terribly frustrating is that whenever something goes wrong, then it must be my Lupus. Well, I am not that textbook. I do things a bit unusual when I get sick. I guess it keeps my docs on their toes. Be sure to keep notes on what you have been dealing with and when new symptoms start. It sounds like you are having a lot of issues right now and you do not want any of them to get swept under the rug or fall thru the cracks. It is very easily to become very overwhelmed and a good support system is essential. Hopefully you have a good network of family and friends that can help you. Always know that you can come here and post your worries, concerns, vent or just to visit. So many of us here have been where you are now and we are willing to help you thru as best we can.

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