urgent care clinic and 2 ER visits all in about 24 hours.....

[Reanne]

MaryBee,

I am sorry for you.  Isn't this crazy?  I have worked all my life, same job 18 years.  It's not like one day I decided I don't want to work. I WANT to be able to work without feeling bad. If I knew how to find a doctor who would be supportive, I would change right away.  It seems no one wants to be involved in disability cases.  They take up alot of time and patients get mad when they don't qualify.  At least that is what I was told by the nurse.  I asked her, "How can anyone blame the clinic when Social Security makes the decision?"  I have talked about fatigue for years to the rheumy.  It's just come to the point, that I can't physically do the work very well anymore.  Written up for not showing initiative??  That is just crazy to me.  I agree without this site, I would be convinced I was just  lazy. 

[gurs]

Reanne,

I can guarantee your hormones are causing the majority of your issues...It doesnt matter that you had your hyster years ago...hormones change at anytime. My friend had her total hyster 20 years ago and just now experiencing menopausal issues, which can be linked to alot of your symtpoms..I never got migraines before my hyster, and now have aura's most of the time, Im learning to take motrin, tylenol, and medrol to help with the headpain. Im so dizzy most of the time too...tons of Neuro issues, alot of MS type symptoms and also was diagnosed this last year with POTS, which can be from hormone dysfunction and Sjogrens. Ive been in the ER so many times, and have seen countless doctors, hormone specialists, so many tests, its crazy. The hormone inbalance throws of our immune systems and then makes any of our autoimmune stuff even worse. I forgot if your on any HRT? Im on a bio-estrogen cream-with testosterone, but cant get my levels up and have a hard time tolerating it. My doctors agree the hormone changes can cause alot of these symptoms. I guess your estrogen should be at least 200. Next time you go to the docs, have them run some blood work on ALL your hormones. They may say they are ok, when actually, for you, they might be too low. Each person is different.

Second..please hope you can find a new doc that will work with you on the disability thing. My doc is the best!! I was lucky to have LTD with my prior job, which I loved to death by the way, but just couldnt keep up. I was sick all the time. Then had to fight for SSD that took me two years to get. I applied on my own, got denied, even after letters from John hopkins, clevelend clinic, and numerous labs that confirmed my sjogrens/lupus/RA diagnoses....My LTD provider paid for my attorney and had to file appeal, which took 1 year...ahhhhh,,,,,,not fun. Got it but had to wait then for medicare. I also learned the docs have to list every single little thing..like fatigue, joint pain, migraines, extreme vertigo, cognitive dysfunction, etc...everything!!! memory issues especially.

First things first..find a new doctor..without a supporting doctor, your in trouble. You wont get anywhere. Not sure what State you live in, maybe someone on this site and give you name of a doc. Hard to find a good one I know...PM me if you need further info too ok...

Gursie

[Iris]

I tried signing up for disability years ago and told my doctors about it.. It seemed like all of them did everything they could to stop me from getting it.. I got tired of fighting them and gave up.. This time when I applied for disability I didn't tell any of my doctors.. I just made sure they had everything that was wrong with me in my files.. My lawyer requested all of those files from them and I got approved for disability.. Most doctors don't want to get involved, especially if they think they may have to fill out something and not get paid for it.. For me it was best to leave them out of it...

I also found it is easier to work with a Nurse Practitioner if you need paperwork filled out like for FMLA..

[Byn]

Now I am frustrated!!  The doctor who said she will help me wants me to go ahead and go the neurologist appointment on Monday and see what he says.  Why did I even bother!?!  She wouldn't even give me a note to work 1/2 days.    What does a person do?  Keep working until you drop?  Get fired for poor performance?   

Reanne, my heart is with you!  I am 'divorcing' my rheumie, am so beyond tired of what I call being Ping-Ponged around by these doctors.  In '09, I was written up and nearly fired due to Chronic Fatigue Syndrome -- now know I have SS.  Last month, same boss wrote me up for "not showing initiative".  I have been at my job 15 years and have worked hard.  Yes, we are supposed to work until we drop.  At last rheumie appointment, I had a horrible flare of blepharitis going on -- it was visible to him -- and I was in tears with fatigue.  Told him I'm leaving my job soon and applying for disability.  He said "I tell my patients that disability is not the way to go."  He looked at me like I was crazy.  A few days later, I logged on to my medical records and he has added to my diagnosis "post menopausal disorder"...so in my mind, those of us diagnosed at 50+ are going to be categorized as hormonal nut cases.  For those of us who have great relationships with doctors, congratulations.  My only advice to those of us who do not, is assertiveness and Trudging Onward...even though we have to do it in a sheer state of multi symptom illness.  "Strength in Numbers" everyone, and having this site is a godsend.

I left my job with an online travel agency when I married my husband and moved to the Houston area .... I have tried to find another job locally, with no luck.  Finally I gave up on finding a job and began selling travel from home.  Now that this disease has raised it's head, I am so happy I don't have to work away from my home or answer to a "boss."  Of course, I don't puy a lot of effort into advertisement or building a profitable business - I couldn't keep up if I did that.  I make a little $$ to help some ... but I couldn't support myself if I had too.
I will save my rant regarding misinformed, self-centered, holier than thou DOCTORS.... I refused to even go to a doctor for 8 years because of all their quackery.  I am fortunate to have found 5 really good doctors now - all of them are very supportive and informed in autoimmune diseases.  (Rheumatologist, General Practitioner, Eye Dr., Allergist, and Dermatologist).

[gurs]

I also know that my doc charges like $15.00 for form fee for the medical statements that SSD and my LTD provider need. They bill my LTD provider I guess..not sure about SSD. Its well worth it though. I would gladly pay for it.

I guess its hard for doctors to have the paperwork done. It does take alot of time etc, but if they really CARED about their patient,
they would I guess. I would start looking for new doctor in the meantime. This is your life..

Good luck

Gursie