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- This topic has 6 replies, 6 voices, and was last updated 16 years, 10 months ago by Philip.
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June 20, 2007 at 3:57 am #27208LucifinaMember
Ok, up front, this is most likely going to be a vent so…if you don’t want to read better stop now I guess.
So for the past year or so I’ve been extermely tired all the time…and I do mean all the time. Within the past few months it has gotten to where it’s a conscious battle to get out of bed and move my body. I then started to notice that my hair was falling out. I would barely run my hand over it and about 10-15 or more strands would come out and washing it…yea, it was just scary. At first I thought it was due to stress from school and what not so I tried not to think much of it. What started to get my full attention is when I felt I was going through hot flashes- I’m only 23 (24 in July)- and my face looked liked it was sunburned when it wasn’t and when my whole body started to hurt especially my arms, hands, joints, etc. About this time I had a horrible- the worst in my life- flare up of acne so I went to the dermatologist for that and hairloss. I joking said to my doctor- when she said she was taking tests- geez, I hope you can find out why I’m tired all the time. Well, after all the tests I get a call saying that there is something wrong and I have to go see a rheumatologist.
The rheumatologist does more tests and finds out the reason for all these symptoms and why I always turn blueish-purple when I’m cold is that I have Lupus. Good part of that is that it’s dormant. This means that there isn’t any inflamation, but I still have all the symptoms and the inflamation can come at any time. He also found that I have an antibody that causes blood clots. SOoo, I now have to take asperin for the rest of my life and may end up on a power blood thinner later on, which is horrible because my grandmother is. I can’t take birth control pills and this antibody in women can cause problems with conceving and bearing children.
The children part was a blow…even though I always said that I doubt I’d have kids and/or I didn’t want kids, but that was the point! I had a choice and now I may not. Yea, my question now is how much more will I have to go through? I know God doesn’t give anyone a burdern that they can’t carry, but geez! Does any one have this or do you know anyone that has Lupus? What’s it like? And how do you deal with it?
Sorry for all this guys, but I needed to get it off my chest and hopefully now I can get some sleep. Thanks! 😀
June 20, 2007 at 8:05 am #162310PhilipModeratorLuci:
I do sympathize with you, and I would like to thank you very much for sharing your thoughts with us. The Mayo Clinic has an excellent article about lupus here but I wanted to quote the following from them because it gives us the lowdown about this disease:Lupus is an autoimmune disease, which means that instead of just attacking foreign substances, such as bacteria and viruses, the immune system also turns against healthy tissue. This leads to inflammation and damage to various parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels and brain.
Why autoimmune diseases occur still isn’t well understood. But doctors believe that like many diseases, lupus results from a combination of factors, which may include heredity, environment and hormones. Although lupus isn’t directly inherited, it’s likely that inheriting certain genes makes you more susceptible to the disease, which then may be triggered by certain factors…
Although I don’t know of anyone personally close to me who suffers from lupus, please know, Luci, that you will be in my thoughts and prayers. Thanks for your “vent”.
June 20, 2007 at 12:31 pm #162309PolarBearNPRParticipantLucifina – pm me . . . I know what you’re dealing with, hon. It’s not as bad as you are fearing and can be dealt with and managed. This form is more an annoyance than anything else. Other forms have serious consequences.
And not to worry about kids . . . mine are perfect and beautiful.
~Heather
June 20, 2007 at 8:46 pm #162306RabidKittenParticipant*WORD for the mayo clinic shout out!*
Okay that being said, I have a candle with your name on it burnin’ darlin’.
June 21, 2007 at 1:18 am #162308MrOatsMemberPhilip wrote:Luci: I do sympathize with you, (snip) Although I don’t know of anyone personally close to me who suffers from lupus,Same here. I do not have or know anyone who has it, personally.
However, I’ve found a support group on WebMD about lupus, it can be found here.
Lucifina wrote:And how do you deal with it?According to this Wikipedia Article, Drug therapy, Acupuncture, and UVA1 Phototherapy (I know it’s technical, but it may be helpful mentioning these to your doctor) can help lessen symptoms/treat lupus.
You are in my thoughts and prayers also…I hope you get better soon!
June 21, 2007 at 11:46 pm #162307LucifinaMemberThank you all for your wonderful support and love.
Philip- thank you for posting the “what is it” I didn’t even think of that, lol. Trust me I’ve been doing lots of research some scary some not, but I’m ok. I guess I’ll have bad days as well as good ones and I’ll just have to make those bad days better…right? 😉
Heather- Well, you’re just awesomely awesome! Thank you so much. You have put my mind at ease and made me feel so much better.
Sammi- Lol, you always make me laugh. Thank you, I really needed that.
Oatsie- Awww, my lil’quaker. Thank you for the support link. I’ll look into it, but the ones I’ve found- and just the thought of it- scares me. Here, BB, is my family so I just felt more comfy here. Thank you for finding different therapies…I’ve found most of just the drug and symptoms than anything else.
Again, thank you for all your support and prayers. It’s meant a great deal…and much more than I can possibly ever say.:crying:
June 26, 2007 at 5:15 am #162305Jeff HesterKeymasterI know this is late in coming, but I just want to say two things.
First off, my thoughts are with you, Lucifina. Life sometimes throws us curveballs, and I truly admire your pluck… and sympathize with the adversity you’re facing.
Secondly, I want to thank the rest of the BBB crew for being that extended family. We all tend to lean on each other in different ways, and like family, we sometimes rub each other the wrong way, but it really warms my heart to see you supporting and encouraging each other.
Now…. GROUP HUG! 🙂
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