Re..New to the group

[Guest guest]

Hi Everyone, My name is . I'm 39 years old and work in the home health

care field these past two and a half years. I'm a very proud Mommy to a

beautiful almost 13 year old and about to get married the end of June. My

medical journey as I like to call it has been an exhausting one. To begin, I've

never been healthy. I was a sick baby when my mom had me and under weight of

just four pounds even. I had horrible stomach issues through out my younger

years and once a teenager had alot of female issues followed by over 14

surgeries. Mainly all female related. Ovarian cycsts, Ivf Cycles, appendix,

fallopian tubes,and scar tissue, laperoscopy,hysterectomy etc.... it's been

difficult to say the least. There was a window there where I was actually

''healthy'' for about a good four years. Then started all the fevers, un

explained ones. They'd spike all the way to 103.0 I'd have constant pain in my

ankles,wrists, and knees, I'd have this strange pink rash all

over my chest. With MANY visits to the urgent care these past two to three

years, all they would say through my blood work was that it was always a UTI.

Sure I'd have the lower back pain and the burning and I'd know it was a UTI but

what about all the other signs? Then came the horrible fatigue. To the point

that I was taking care of a patient and couldn't lift her or transfer her with

the transfer belt. (I forgot to mention I'm in the home health care field) I was

shaking and couldn't control my shaking. I didn't know what was wrong with me. I

was scared. I felt like it was the flu. I took my temp and it was a shocking

103.5 I ended up back in the E.R. and they admitted me. I was in there for two

weeks. They ran several tests,all kinds of blood work, CT, MRI, XRAYS,

ultrasounds. You name it they did it. At this point Urgent Care had become my

home away from home. I actually started to know the nurses and doctors. And

''some'' of the doctors were

puzzled. They couldn't give me any ''answers'' until one night, I landed back

in the hospital with a severe kidney infection and later after being in urgent

care for oh gosh the tenth time, a angelic doctor actually helped me. He ran

another series of tests. And came back with a list of specialists that he wanted

me to see. He told me that with all the tests that came back it was possible

that he thought I ''might'' have ADULT STILLS DISEASE. He spent alot of time

talking with me and my fiance, educating us. And so we set fourth on our long

journey ahead to see if in fact I had Adult Stills Disease. I saw Dr. Berquist

who has been a heaven sent. She ran another set of tests,more blood work. At

this point I was emotionally exhausted from it all It just became second nature

to me. It's as if I was becoming numb to everything around me. I was in denial

for most part. I wanted answers true answers. But yet I still had and to this

day have issues with un

resolved UTI on a weekly basis. In the meantime I was put on Prednisone for a

few months and didn't respond well to the meds what so ever. So then we tried

Methotrioxate. It's been helping, but my joint pain is over whelming. Mornings

are my enemies. I have such morning stiffness. Stairs have become a new

challange for me. I'm winded easily and have since been put on lyrica as well.

I'm also on pain meds. My main struggles here are dealing with the pain when at

work and not being able to take any meds during the day. I suffer through it.

It's become such a issue that I've now decided to go back on medical leave

again. I must report that I was on medical leave last year in Dec until this

April.. Since being back to work it's beyond hard to cope with. A lot of people

just don't seem to understand this disease. I feel like they think I can put a

band aide on it and make it all better. Or that the meds I'm on are a miracle

cure and I'll be fine. I must say

that the fevers don't come every night as they use too. I am forever grateful

for that. But I do have chronic migraines, and I also struggle with sleeping. So

I have more than one issue going on. I never experienced depression in my life.I

never knew what it was like to have such feelings of sadness...that's what

I''thought'' it was. Just sadness. I was feeling sorry for myself. I felt so

defective. I also have vitiligo as well. I'm not able to have children. My

daughter is adopted and I feel blessed that god gave me this miracle in my life.

I also wanted to mention how thankful I am that I found this group. That I have

other people that can relate to what I'm going through. There are days it's

hell. The pain is too much to endure. I have taken it upon myself to inquire

about disability and I did retain a lawyer. I am praying for the best. I'm sorry

for writing an entire book here, but I do read all the other posts and it gives

me hope! Thank you kindly

for letting me sahre my story. Truly