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just-f-it
10-06-2007, 04:13 PM
hi everyone,
i am a 31 year old female diagnosed with SLE 3 years ago. although things often appear to be getting better thanks to quensyl (plaquenil in america) and learning how to relax when my body tells me to, i still get SO frustrated whenever the big ugly wolf shows up.
the last few days have some of the worst i can remember. i have the "electric" feeling in my joints and muscles, i can't sleep well at night, my heart is beating very quickly and i change between hot and cold so quickly and on top of all that my head gets so foggy when i feel like this!
so my husband was just trying to cheer me up and we started coming up with names for my "other" partner (lupus).
i thought some of these were pretty appropriate for the terror that lupus can cause, hopefully they can make others laugh like it did for me...

Osama Bin Lupus
Slobodan Miloselupus
Benito Lupolini
Adolupus Hitler

that's all we've got for now. any others? :P

Saysusie
10-07-2007, 07:32 PM
Hello :lol:
Welcome to our family. I know what you mean by really hating flare-ups and all of the other symptoms that come with those flare-ups (like inability to sleep; muscle and joint pain; etc.)
I'm unable to come up with any other funny names :( Not that creative I guess. Maybe someone else will!

Peace and Blessings
Saysusie

just-f-it
10-08-2007, 06:36 AM
can anybody help me, i am having for two days a pretty bad heart rate, today i had 102 and is nnot stoping at all. Is is normal , anybody had experinced?

misslisa1017
10-08-2007, 02:46 PM
I used to be an EMT, not a doctor by any means, but a fast heart rate, (tachycardia) isn't usually normal for two days. I'd go get looked at asap, and if you haven't already gone to a doctor, I'd head to an ER. Better safe than sorry.

Good luck to you.

Lisa

just-f-it
10-08-2007, 06:01 PM
Thank you Lisa, i think i am heading to the doctor. I think i have many questions to ask, it is good time to. I just always hate to think that they may keep me in Hospital. I live in Austria and Lupus over here is for people pretty a unknown, NOT for my doctor though. I just can't deal with the thought to go again in the hospital. I bet you guys all whent through all that bevore. However i will keep you in touch.

Saysusie
10-09-2007, 01:04 PM
Hi Just...
Please let us know how you are doing and what the doctors are doing for your heart rate. We will be waiting for your post!

Peace and Blessings
Saysusie

just-f-it
10-15-2007, 10:28 AM
HI everybody,
I viisted my doctor and they made a EKG, and she sad it is harmoles, she just put me in biger dosis of Cortisol, which helped me. I also need to see a Internist soon. But the big concern is gone,since i know now that sometimes heart rate can be typical for Lupus.
Hope i gave good infos.

hatlady
10-15-2007, 10:59 AM
Ask your doctor if your thyroid needs to be checked - when I had non-graves hyperthyroid I had a resting pulse of 95 - Oh do I know how miserable you feel if yours is even higher!

I wasn't aware that high pulse rate was typical for lupus. Anyone else aware of this?

gentle hugs and hope you feel better quickly!

Saysusie
10-16-2007, 01:08 PM
In answer to your question about Lupus and a high pulse rate: It is possible. When Lupus affects the cardiovascular system, the symptoms can unclude: hyperactivity of the heart, accelerated pulse and high blood pressure.

Peace and Blessings
Saysusie

just-f-it
10-17-2007, 06:51 AM
Thank you for the advice to ask for thyroid .... I am sorry if my engllish is limited and sometimes i don!t give the full info., i will try to improve my writing in future:)
To much going on im my life at he moment , and maybe i will try to find some peace with some relaxation musik bevor i reply to you It really helps.

Good day to everybody.

Christin
10-21-2007, 07:07 PM
Oh my gosh, THANK YOU for making me smile! I swear, dealing with this disease and all of its wacky and often-ugly side effects is not easy. Humor truly is what gets me through the rough spots. I have a bit of a warped sense of humor as well and though right off the top of my head I can't add to your list, in time I may be able to. Trust me - my tired brain will be a-workin'. In the meantime, a sincere thanks for showing me that I am not alone in the ability to laugh at myself. It is often the one thing that gets me through and helps others to deal with me in a way that does not make them sad or uncomfortable.
Take good care,
Christin

just-f-it
10-25-2007, 04:35 AM
Christin,

THank you for appriciating that. I have found that laugh help me a lot to get through my day.
One other question i have, anybody know if Full Spectrum lights against Depresion cam cause any effect on trigerin Lupus. I am considering to find one of this things?

Humor is the best.

just-f-it
10-25-2007, 04:49 AM
HI Hatlady,

I was by docotr, and he checked the thyropdis. Everything is OK. THe heart rates and verything was due to my hectic time that i am living right now. But i am very happy that finally one doctor was so open and asked me about my emotional part of this. And to be onest it made my day!, since not all doctors aske you about that. I desided again to go for anti depresion, which i stoped taking 3 months ago. I have to have more energie in my daily life. One more thing that i have learned in last weeks, is that nobody will know what is going on with my body and mind better then myself. So i will stilll ask for opinions but i have to KNOW ehat is good for me and what not. Lupus can make you moch stronger than you were befor. Thats the storie of the day.
I hope everybody has understand what i meant.

"See you"