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michellems87
06-09-2008, 06:46 AM
hello all:) my name is Michelle and I was diagnosed 3 months ago which was exactly one month after my 21st birthday!! I am currently in university. I m totally new at facing the symptoms of lupus particularly athritis, fever, nausea, moon-face and hair loss. Being a completely healthy person and a competitive athlete prior to my diagnosis, I had never experiences so much pain and discomfort all at once.

I have had 2 give up on all my outdoor competitive sports due to the excessive sun exposure, joint pains and of coz.. steroid treatment. Wouldn;t wanna be caught for doping;) hoping 2 learn more abt the condition as i go along and meet more friends whom i can share experiences wit:)Anyone from any where is welcomed to contact me at any time

Saysusie
06-09-2008, 10:40 AM
Hi Michelle :lol:
Welcome to our family where everyone is familiar with the aches, pains, sun sensitivity and total lifestyle changes that comes with Lupus.
The steroids used in the treatment of Lupus are not anabolic steroids and, therefore, should not be included in the ban on steroid use with athletes. The steroids that we use are called corticosteroids. Cortisone is a steroid that is manufactured naturally by the body's adrenal glands. Cortisone has been found to have a distinct anti-inflammatory effect which is very useful in Lupus because Lupus causes inflammation in our tissues, joints, and organs. Cortisone medications made synthetically are among the most effective anti-inflammatory drugs known as they can substantially reduce the symptoms associated with inflammation, such as:
- swelling
- warmth
- tenderness
- pain

Prednisone is the most common corticosteroid used in the treatment of Lupus. Is this what you are taking? Since you mentioned the "moon face", I figured that you were taking Prednisone.

Most of us have had to give up many outdoor activities because of our sensitivity to the sun. However, there are many suggestions throughout these forums, about how we can protect ourselves from the UV rays in order to enjoy short periods of time in the sun. They basically advise that you should always wear sunscreen (a minimum of 35 SPF) that protects you from both UV and UVB rays. Scientists have classified UV radiation into three types - UVA, UVB, and UVC. The stratospheric ozone layer absorbs some but not all of these types of UV:
* UVA Not absorbed by the ozone layer

* UVB Partially absorbed by the ozone layer

* UVC Completely absorbed by the ozone layer

* UVA and especially UVB penetrate the surface of the skin and can cause the adverse health effects listed above.

Also, think about wearing a hat whenever you are outdoors, as well as sunglasses with UV protection. There are several clothing lines that offer UV protection in the clothing. They are rather expensive, however. Otherwise, dress in layers, making sure that you keep your arms and legs covered at all times.

I hope that this information has been helpful to you. Others will be along to welcome you to our family. Just know that you are not alone!

Peace and Blessings
Saysusie

laurid8967
06-10-2008, 06:01 PM
Hi Michelle,
Welcome to the forum here. I have found this site a really wonderful place to learn both facts and tips regarding this disease, and a really supportive place to vent our frustrations! I'm sorry you have had to change your lifestyle so rapidly - it is an emormously frustrating aspect of autoimmune diseases to really WANT to do something, and be literally UNABLE to do it. Listen to the folks that have been around a while here. They have wonderful tips based on experience and true knowledge - a winning combination. Combine that with compassion and PRESTO!...you have found yourself in the right place. I hope you feel better soon, and keep posting - I find it a huge help at the end of a long day.
Take care of yourself -
Lauri

Amber13
06-13-2008, 10:21 PM
this was a huge issue for me as well!
first it was gymnastics because of joint pain, then i went to low joint impact water polo, which had to be down graded to swimming, and due to lack of an indoor pool had to give up on that too. now ive opted for indoor rockclimbing, night paintballing (going in a few weeks!) and the gym!
best of luck my new lupus friend! hope i could help!

rob
06-14-2008, 04:33 AM
I know how you feel Michelle. I used compete in various shooting sports, and I was big in mountain/rock climbing. Had to switch over to lower impact, easier stuff. I kayak/sail quite a bit, and get out and hike the easy stuff, no more Grand Canyon or strolls at 14000 feet for me. It's frustrating. I'm dealing with the effects of methylprednisone treatment right now, so I know how you feel. I was diagnosed with SLE back in '04. I started having serious motor/coordination problems about a year ago, and found out I have MS about 2 months ago. Never knew what an "overlapping illness" was. I guess there are alot of folks out there with the MS/SLE combination. I see alot of people here with SLE and fibromyalgia. For me, I just had to accept that there were things I could no longer do. But, I've discovered a bunch of new activities that I CAN do, and it's really fun to learn a new sport and hobby. Anyway, I'd like to welcome you to our family here. This is one of the best Lupus sites I've found, and the people here are just awesome. Glad you found us!

Rob

KathyW1958
06-14-2008, 04:40 AM
Hi Michelle

Welcome to this site. You can get a lot of good answers here from people who have this illness. I like this site a lot. I am sorry to hear that you have to give up a lot of competetive sports. It is sad. There are a lot of us that are very sun sensitive. I use a sunscreen that is 45 or higher and I have to wear a hat. I am suppose to wear long sleeved shirts and do so now, but for years I refused to and have paid a high price for that big time. You will learn what your limitations are and do the best that you can do. This is not an easy illness to live with, but hopefully someday they will find a cure for all of us that have SLE. God Bless

Kathy

rob
06-14-2008, 04:45 AM
Hey Amber,

I bought a Tippmann paintball gun, and tried out paintballing for the first time last year. I thought that since I used to be a competetive shooter, that I'd really clean house at the paintball course. Wrong! It was like that Clint Eastwood movie The Gauntlet, where he drives through this town with about a hundred guys shooting at him! I looked like one giant welt at at the end of the day. Those young guys can run twice as fast, and shoot on the fly with amazing accuracy. Gonna try the "old folks" league for those of us who are slow and need bifocals. Although I got plastered with paint, it was really fun. I'm looking forward to trying it again this summer. Wear thick clothes, be prepared to duck, and have fun!

Amber13
06-14-2008, 07:45 PM
i bought the ion and got a very girlie pink body for it. =) i think it helps intimidate the guys! im pretty good for my lack of running skills and ive learned my lesson to never go when its cold! my boyfriend and i went mid winter (i live in so cal so it wasnt that cold) and i had welts spanning the size of a softball, did i mention i bruise easily? hahaha the cold plus all the mud did not make me a happy camper. i am going back on the 27th and im definatly going to take your suggestion of thick clothes! i always remeber it hurting alot less.

best of luck with your league! that sounds like so much fun!!