View Full Version : Hiya :):(

10-07-2011, 06:05 PM
Hi just introducing myself. I am a 29 yr old mother of two toddlers and a 9 year old. Life has been getting increasingly more difficult. I have a husband and mother who think my illness is dietary yet I do not eat grains, sugar, fast food or anything processed.
My first symptom was hair loss 8 months ago but looking back it probably all began 3 years ago with fatigue and a swollen sciatic joint. After the hair loss incident I came back with a positive ANA and a positive anti-RNP (the paper said consistent with MCTD.) But by the time I got to a decent rheumy the anti-RNP had cleared out of my blood (ANA still pos though) and I was feeling fine. For about 2 months or so I thought I was home free. I thought maybe the bloodwork was a fluke.
I was wrong.
I started getting more tired in early August and by mid August I had my first "cold spell" where I first became painfully cold and then the toes/bottom of feet turned a sick bluish grey. It was during a pap smear and the gyn said "that's Raynaud's." Still in denial at this point I went about my merry way until I could no longer lift my 3 yr old. That's when the rheumy did a steroid test one me to see if I responded. Well I did but 4 days after I went off it was like the bottom dropped out. At some point the Raynaud's started in my hands as well and the fatigue turned to the kind where just putting on a shirt put me out of breath. Then came the joints. First in my toes then wrists then hips then fingers. One night I couldn't even move with intense pain. I was started on MTX injections.

I just had to face that I was sick. Now if only my family would.

I can't get a hard diagnosis yet but my treatment is consistent with lupus -- MTX and prednisone when I can't take the pain anymore. I have symptoms of both lupus and Sjogrens. We just don't know which one is going to claim "head of household" in my body. There are some days where I feel normal again. There are some days where I am limping. Some where I can't seem to really catch my breath and some where I just sleep all day but I don't really hurt. Then there are some days where I'll just have some twinges and otherwise be fine. It's all very confusing to me.

So that's my story of limbo. Is it a long one? xoxo

10-07-2011, 06:30 PM
Hey howsabout :)

Autoimmune diseases are extremely confusing. Not only are they hard to diagnose, (especially Lupus), but blood results can have false negatives when they should be positive and vice versa, yada yada. But one of the most confusing things we deal with everyday, is having no idea how we're going to feel a few hours from now, let alone tomorrow or the day after. Then again, it can be one of the nice things about it, because you might feel horrible in the morning, but 5 hours from now, you could be doing okay. It's also very confusing for our family members, because they'll say things to us like "well, you could do this yesterday", Or one week we may be walking with a cane or walker or even in a wheelchair, and the next they see us at the grocery with no walking devices, and think we're just faking for attention.

I'm sorry to hear that your family believes you are somehow bringing this upon yourself with diet -which is ridiculous, because Lupus is neither caused nor cured by diet.

It's important to know that you're not alone in this. I know sometimes it can feel like it, but thankfully, the forum really helps that feeling. There are so many here who are so kind and thoughtful, not to mention very understanding and good with advice (:

We're all here if you have any questions or just feel like ranting or talking to others.
I'm glad you've found the site, and just wanted to give you a nice welcome to the forum!
So, Welcome to the Forum!!! :D

Its not as active on the weekends just to give you a bit of a heads up, but it's great to have you here (:

10-07-2011, 06:41 PM
hello and welcome,
it is not uncommon to have more than 1 outo immune disorder at the same time.
there is actually 63 of them.
(we have another thread listing them)

i have found others have a hard time understanding where we are comming from.
our problem is outside there comprehension. so they do not know how to handle it.
a systemic problem, cannot be treated like a broken bone, this is hard for most people to understand.

please read a few of the posts, they are from our life experiences.
you are not alone in this, just lonely.
we are here to help. by helping you, we also help ourselves.

10-08-2011, 02:55 PM
I really appreciate the warm welcomes. You're right, I cam start the day wonderfully and in two hours feel so run down. I think the worst part is my husband telling me that the stress I am causing him is going to kill him. It makes me wonder if I should just leave him because what happens when I get really sick? Is he going to panic and have a heart attack? I don't mean to do these things. Hes very black and white. You're either able to make yourself a sandwich or you're too debilitated and need to go to the ER. There are no shades of grey. I get so frustrated I can hardly type about without going into rage mode.
Such is life!
Once again, thanks

10-08-2011, 09:49 PM
Chiming in with my welcome. I really feel for you, it has to be so hard to have young children and an unsupportive husband and family and no name for what is wrong with you. If changing one's diet were enough to get rid of autoimmune diseases, we would all be doing that and this forum wouldn't exist. It is common in our society to blame the sick person for their illness, and to be impatient with them when they don't get well. Men tend to want to be able to fix things, and get frustrated when that doesn't happen.

About 10 years ago my husband had a tumor in his pancreas and I was a total jerk about it for a while. It scared the crap out of me, and I couldn't handle it. I said mean things and felt like I was going to have a heart attack from the anxiety. Once the surgery was over, I was the best nurse he could ever have, but that fear of the unknown made me into a person I didn't recognize or like very much. I don't know what your husband is like normally, but good people can have bad responses when loved ones are seriously ill. My husband worked with a pharmacist who divorced her husband when he was diagnosed with a brain tumor. She didn't even visit him after surgery. Eventually they remarried, and then the tumor came back, but she stood by him the second time. He's disabled, and she takes good care of him and they have a good life.

I'm not making excuses for your family. But for those of us who are sick, getting a diagnosis is often a relief. For our loved ones, it triggers a whole different set of feelings, especially when they have to accept that you will always have this (and by association, they will always have to deal with it). I really do feel for you and hope that you and your family are able to figure things out. Please keep coming by and posting.