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Stacy
06-17-2009, 09:40 PM
Hello all, I'm new to the forum and feel grateful to have found it :banana:. This whole past year has been such a low point for me in my life, that hopefully this website will work as a support system that I've been searching for. I've tried to keep my spirits high, but there are days where you just feel completely alone. I was once a very active, fun loving, motorcyle riding crazy woman who has lost the ability to preform my favorite hobbies. Without writing an entire story, I'll just share a little of my history with SLE...

I was originally diagnosed with SLE in 2000 when I was 23. My original symptoms and complaints were mainly severe joint pain, numbness and tingling in my fingers, fatigue, difficulty breathing, constant low grade fever and strange full body swelling (I would actually bounce back and forth between a size 8 and size 10 within only a couple weeks). Several blood tests, x-rays and physical examinations the doctors finally diagnosed me. The rheumatologist tried several different meds, however the only two that I seemed to respond to were methotrexate and prednisone.

Being young and stubborn, once my symptoms disappeared I decided that I was once again healthy so I quit seeing my doctors (lack of insurance helped a small part with that decision). I was lucky and the symptoms stayed away until 2003 when I started to have a little joint pain again (nothing severe this time though). Armed with health insurance this time, I went to an in network doctor who decided after only a physical exam that I infact did not have SLE but instead undiagnosed me, and diagnosed me with non-specified arthritis instead.

For the following 5 years I was able to manage the arthritis with rest and motrin. Last year all of that came to a halt after coming down with strep throat, earning an awful sunburn while on vacation and having a miscarrage in the summer. I was slowly falling a part again. I kept putting off going to the doctor until it got to the point where my hands were so painful and swollen I wasn't able to even brush my hair. I went to my primary doc who ran several tests and referred me to a wonderful rheumatologist who not only looked at all the blood work my primary did, but also decided that he wanted to rerun all the blood work himself with some other labs (talk about feeling like a pin cushin :laugh: ) Well after all the lab work and physical exam the verdict is in. I have been diagnosed with Rhupus. Lucky me, not only do I have SLE but I also have RA :headbang:

Wow...I had intended to make it shorter than that...sorry for the long winded post. I look forward to getting to know, supporting, and sharing a laugh with everyone else here.

debbie-b
06-18-2009, 05:43 AM
Hello all, I'm new to the forum and feel grateful to have found it :banana:. This whole past year has been such a low point for me in my life, that hopefully this website will work as a support system that I've been searching for. I've tried to keep my spirits high, but there are days where you just feel completely alone. I was once a very active, fun loving, motorcyle riding crazy woman who has lost the ability to preform my favorite hobbies. Without writing an entire story, I'll just share a little of my history with SLE...

I was originally diagnosed with SLE in 2000 when I was 23. My original symptoms and complaints were mainly severe joint pain, numbness and tingling in my fingers, fatigue, difficulty breathing, constant low grade fever and strange full body swelling (I would actually bounce back and forth between a size 8 and size 10 within only a couple weeks). Several blood tests, x-rays and physical examinations the doctors finally diagnosed me. The rheumatologist tried several different meds, however the only two that I seemed to respond to were methotrexate and prednisone.

Being young and stubborn, once my symptoms disappeared I decided that I was once again healthy so I quit seeing my doctors (lack of insurance helped a small part with that decision). I was lucky and the symptoms stayed away until 2003 when I started to have a little joint pain again (nothing severe this time though). Armed with health insurance this time, I went to an in network doctor who decided after only a physical exam that I infact did not have SLE but instead undiagnosed me, and diagnosed me with non-specified arthritis instead.

For the following 5 years I was able to manage the arthritis with rest and motrin. Last year all of that came to a halt after coming down with strep throat, earning an awful sunburn while on vacation and having a miscarrage in the summer. I was slowly falling a part again. I kept putting off going to the doctor until it got to the point where my hands were so painful and swollen I wasn't able to even brush my hair. I went to my primary doc who ran several tests and referred me to a wonderful rheumatologist who not only looked at all the blood work my primary did, but also decided that he wanted to rerun all the blood work himself with some other labs (talk about feeling like a pin cushin :laugh: ) Well after all the lab work and physical exam the verdict is in. I have been diagnosed with Rhupus. Lucky me, not only do I have SLE but I also have RA :headbang:

Wow...I had intended to make it shorter than that...sorry for the long winded post. I look forward to getting to know, supporting, and sharing a laugh with everyone else here.

Hi Stacy,

First of all, welcome to our family, I am glad that you have found us. You will find it very helpful, plus we are all here to support each other. All of us understand what you are going through. I was diagnosed with SLE and RA about two years ago. Unfortunatly I am now having more bad days than good days, but I embrace the good days.

Debbie

rob
06-18-2009, 06:13 AM
Hello Stacy,

I'm Rob, and I was diagnosed with SLE five years ago. I love your description of yourself-"fun loving motorcycle riding crazy woman". That's great! I know what you mean about losing the ability to perform some of your favorite hobbies. I used to be a rock climber, pilot, I jumped out of perfectly good airplanes, rode motorcycles, was a competetive shooter-I was into all sorts of stuff, and had to quit most of it.

Dr./Rheumo's like to "un-diagnose" us don't they? I never understood how you could be diagnosed with an incurable disease and then be un-diagnosed. Once you have Lupus, you have Lupus. It's either active, or in remission, but you always have it. It would seem many in the healthcare community don't understand this basic fact. Anyway, welcome to our group, and please make yourself at home!

Rob

magistramarla
06-18-2009, 10:29 AM
Hi Stacy,
Welcome to the group. We all know what you mean about not being able to do the things that used to come so easily. I get sooo frustrated when it wears me out to just do a few loads of laundry. I also love to cook, and it takes me hours to make a nice meal that I used to whip up in no time, since I have to stop and rest so often.
I was diagnosed with a real mixture! The rheumy calls it Mixed Connective Tissue Disease. I tested positive to Lupus, RA, Psoriatic Arthritis and Sjogren's. I also have Spasmodic Dysphonia and Meniere's Syndrome.
I guess that our bodies are telling us that now it's time to slow down and smell the roses!
Hugs,
Marla

Stacy
06-18-2009, 03:33 PM
Thank you all for the warm welcomes. This is a wonderful forum full of such great info :grouphug:. It's been very comforting to read others stories and see that there are people out there who understand the ups and downs of living with this strange disease. It's weird, but I was starting to feel so alone. All of my friends are very active and healthy so most of them don't know how to react to what I've been going through. Many of them have just given up inviting me on long weekend road trips, because they're always given the same story..."Wish I could make it, but I'm too tired.", or "Sorry, maybe next time. Right now I'm just in too much pain." Not to mention, I get tired of hearing myself always give the same answers.

:1zhelp: Rob, what were some ways you managed to cope with having to give up on most of your adventurous/physically demanding activities? I long for the day I can get out and spend a day riding the beautiful twisty back roads. I tell myself daily that it could be so much worse, and that there are others that have it worse than I...however that doesn't stop the occasional pity party I'll have behind my closed doors :banghead: