Newbie with possible Lupus

[mommasita]

Hi, this is my first time posting on THIS board...

I was informed by a very kind Dis'er to come here and so, here I am

I am so sore today, and typing hurts my hands. I think, if nobody minds, I will just copy and past my first post about this on the CB..

Thank you to any and all you may read it:

I have been having some weird things going on. It all started with Petechaie, which are basically blood blisters. I have been having them on/off for 6 months or so. I had my blood done, and I was not low on platelets. One of the major reasons.

Today I had my first meeting with a Hematologist. We have the blood clotting factor in my family, and this was a referral for that, as well as the Petechaie.

Now, she seems to "think" that I may have Lupus. I have MANY signs, rash, soreness, eye sensitivity, but mainly cold hands with peeling, changing of skin color, and major body aches w/exhaustion.

I have to do another whole series of tests which will take minimum 6 to 8 weeks to come back to her. She will not call if all is Ok, but she told me she is honestly siding with Lupus or another auto immune disorder..

Wow, I am not nervous, but was really taken by suprise on this. This is NO time to be tired, or not with it. Working 7 days 10 hrs a day, and DH just started a new job last week..

So, just looking for any words of wisdom..Thanks.
__________________

 

[mommasita]

OoPS...Can a mod please move this to the DIsabilities community board? I made a mistake in where to post this. Thank you

 

[forr2grls]

No words of wisdom,just many hugs.Well,ok a bit of "wisdom" .Take things slow,don't over exhert yourself.Try to keep track of when flare-ups occur-what had you been doing,eating,etc.Here is a site for Lupus. Lots of info on the boards and people in the chat room are very friendly and helpful. http://www.thelupussite.com/forum/index.php


Paula

 

[disney-super-mom]

Just wanted to post here and offer you my support!

You know, if it's some kind of autoimmune disease, you're most likely going to have to re-think working those EXTREMELY long work weeks. Seriously, your work week concerns me. Have you told your doctor about how many hours you work? Working 70 hours per week is difficult for healthy people, but for someone with a chronic health issue, it's just not feasable. Is there any possibility to cut down your hours on the job? How are you going to feel better without proper rest?

 

[mommasita]

Just wanted to post here and offer you my support!

You know, if it's some kind of autoimmune disease, you're most likely going to have to re-think working those EXTREMELY long work weeks. Seriously, your work week concerns me. Have you told your doctor about how many hours you work? Working 70 hours per week is difficult for healthy people, but for someone with a chronic health issue, it's just not feasable. Is there any possibility to cut down your hours on the job? How are you going to feel better without proper rest?

Thanks for your nice caring post..

Right now I can not cut down. Hopefully soon I will, but that is impossible now. When Dh is there regularly, and gets a schedule hopefully that can be done. I will await my results from the DR. I actually have to find a morning I can go for such tests. I think next week I might go on Wed, if not the following week...She did ask me the Dr, about my schedule, and had wide eyes. Says that maybe I merit being tired ..I hope that is it, but doubt it. I know I am getting older, but still, I have worked harder. I am at work, but not a hard job at all, trust me, not one bit.


Thank you very much for your wonderful insight though, it means a lot

 

[AJKMOM]

DH has lupus, first diagnosed in 2002. He went to the Cleveland Clinic for chemo, and is on all sorts of medications. He is tired a lot, but has been to WDW 3 or 4 times since then. He just takes it easy, sits when he has to, and has as good a time as possible.

Be glad that you are getting a diagnosis early, no matter what it is. I was talking to a woman whose brother ignored the symptoms and didn't tell anyone he was sick. By the time he did, in less than a year, the lupus killed him.

 

[mrmagicmph]

For what it's worth, first, from my wife & myself...

Beyond that, I can happily relate a readers digest version of a story for you... my father's a physician (just retired last year after having been a physician for 46 years). I was in his office (occasionally visiting, usually working in some way or another) for probably 30+ of those years. During all that time, he had a patient who I'll call Jane (very much NOT her name).

Jane was one of his first patients. She was diagnosed with lupus just before transferring into dad's care. I am most pleased to say that I had the pleasure of knowing and helping to take care of Jane for 30 years. Yes, she was diagnosed early. No, she did NOT have an easy time of it. But, she had probably 29+ of those 30 years as good, productive, and loving years. She was a wonderful person, and I am most pleased to have known her.

So, what's the moral of the story? Easy. Lupus CHANGED her life, but by NO means did it destroy her life. If you've got it, be SMART, PAY ATTENTION to what your doctor AND your body are telling you, and make sure that you make the time for enjoying yourself; NOTHING is worth clobbering yourself over.

For your next trip, & for the many trips to WDW you take after that, Enjoy the Magic!

 

[SueM in MN]

OoPS...Can a mod please move this to the DIsabilities community board? I made a mistake in where to post this. Thank you

That's OK.
It took me a little time to get to it, but I'm moving it now for you.

I see you got some very helpful replies already and hope you get more after it's moved.

 

[tink2dw]

Hi! I was thought to have Lupis but it turned out to be another Auto immune disease.

Called Addison's Disease which is a lack of cortizone in the blood, all the hormones need cortizone to function. I have the changed of skin color from fair to tanned, and major body aches, w/exhaustion.

I now take a 30 mg replacement dose of cortizone a day. It helps, but I must be careful not to get exhausted, or it can put me down for several weeks.

 

[LoriMomx5]

I was diagnosed with Lupus after my second pregnancy (my first pregnancy was twins then I had my second pregnancy and third son 12 months later!). I was having unexplained fatigue, mysterious skin rashes ,fevers, joint pain. At first it was just thought that my body was stressed from having a twin pregnancy with c-section then another pregnancy so soon, but with testing and the diagnostic criteria for Lupus (4 of 11 symptoms were necessary when I was diagnosed and I had 6 of 11) . That was almost nine years ago and I have since gone on to have a third pregnancy without complications (4th son) and adopted my duaghter 4 years ago for a total of 5 children now 10 and under. I work full time in a physically demanding job as an occupational therapist doing rehabilitation with adult stroke and head injured patients and I am active in my community, church etc. I have my "bad days" but have been lucky to have had limited internal organ problems such as kidney, heart or lung issues. The treatments for Lupus are much more impressive than they were previously and the outcomes are good for the most part. I do live with chronic pain ,but manageable. I have more issues with my hand joints and hips then other joints and I too had an issue when I was first diagnosed with Lupus and the had me on naproxin of petechia which was final thought to be a form of vasculitis that was related to the naproxin similar to an allergy and when I got off the naproxin it cleared up and never came back. I hope your test come back good. Hang in there. You may need to slow down a little until you feel better. If you have Lupus or another autoimmune disorder stress and fatigue will definately make it worse. Lori