It's Roll Call Time!

Lisa - posted on 08/15/2009

omg i cantbeleive that there are more like me! i have felt so alone sometimes to tired or sad to log on fb l have dx of lupus/pos ana also fibro and reynauds my hands and feet are a problem pain and swelling throw in a few sezuires alittle depression and misc, voila! Lisa :) maybe we can touch base once in awhile

Heather - posted on 07/19/2009

Hello I live in Pound, Va. I was diagnosed in 1998. I am 33 and have 2 beautiful children. My son has seen me through the bad time. They put me on high doses of steroids and Plaquinial. I have a hard time just being mom. I have dealt with the disease by finding natural foods and trying to relax and find my quiet time. Because of the high doses of steroids I have had to have both hips replaced. I can no longer work I have tried it was either work or stay at home taking care of my children and house. When I would work it was like I was too tired to take care of the house. I lived in Richmond Va at this time. I am learning to take one day at a time. I have a sister and aunt that have it also. I do not go into the sun as much as possible. If I do I try to have sunblock and keep in shade. This disease scares me because it acts up on menstral cycles. I am right now in the process of finding an ob/gyn to do a hysterectomy so that I can enjoy life a little better. My husband has helped me fight and not give up. I am scared of it because it almost killed me by keeping water in my body and kicked out protein. I want to be normal again.

Michelle - posted on 02/13/2009

PS;  Be careful about the Prednisone.  It caused one of my joints to collapse because I took it for more than nine months straight.

M

Michelle - posted on 02/13/2009

Sorry, Janet.  I am not the one to ask for tips about exercise!  I hate every minute in the gym.  I know I have to do it because I have put on a lot of weight and because it keeps me moving.  Other than that...ugh!  I used to dance as a kid and I really enjoy outdoor activiites.  Unfortunately, my ankles are nto allowing me to do ballet anymore (I know because I tried last summer!) and I love in the middle of the concrete jungle ( not so convenient!) so I'm stuck with a gym unless we can get away for the day or weekend. 

I do have to say that I have an amazing trainer who has put my shoulders back in their proper location with proper weight lifting and repeptetive motion.  He has helped me become stronger and more confident about my ability to defend myself.  I guess it hasn't been ALL bad. 

I appreciate your note and look forward to more communication with you and the group in the future.

Take care!

Janet - posted on 02/13/2009

Welcome, Michelle. Thank you for the post! While I don't suffer from RA, thankfully, I do have several family members and friends who are also challenged with RA and the pain, joint damage, fatigue, and the general rollercoaster ride it brings with it. Lupus is similar in that it causes joint pain and fatigue, but it doesn't cause long-term damage to the joints. My first dr. visit to explore my joint pain was at age 13, and I had been excused from gym class, swimming lessons, etc. because it was so severe in one knee in particular. They did an arthrogram to look for visible inflammation/damage and found only minor inflammation. I can tell you, though, the level of pain did NOT correlate to the level of inflammation they found! I've heard similar stories from others in Autoimmune support communities, too, though no one seems to know why that is. I hope the Enbrel keeps the RA activity at a minimum so that you don't have to take so many anti-inflammatories for the swelling and pain - they sure aren't good for us long-term!



I can't imagine the additional challenges you face being an elementary school teacher - I admire your profession and your commitment to our children's education. Some days I find it hard to get out of bed to face the mirror or even other adults, let alone a classroom full of rowdy kids! ;-) It's on these days that MY kids become my inspiration and purpose, and so I suppose you have that many more of them to keep you going!



One of things I find most difficult is exercise - I've never been athletic or physically motivated, and am thankful that I have a small build and have stayed at a reasonable weight for my height, despite some of these meds! (5'2", 110 lbs) And I know I need to exercise to stay fit, keep my heart, lungs and body in shape to fight the battles of aging and autoimmunity, but I have NO energy or gumption! I always seem to find a good excuse not to do it - any ideas? :-) I need all the help I can get!



Again, welcome - I hope many others like you join our group!



Janet

Michelle - posted on 02/12/2009

Hi,

i'm new to the community and looking for a support network.  I've been diagnosed with RA  since I was 17, and will turn 37 this year.  I am RA factor positive.  I currently take Enbrel shots once per week as well as calcium and fish oil daily.   I was diagnosed only after bugging my parents, who are Christian Scientists, for two years to take me to the doctor to figure out what was wrong.  It was only when I was self-medicating with eight Advil three times per day, that they finally agreed.  Since then, I've experienced more pain, more againy, and more up and down emotions than I would have thought humanly possible.  Currenntly, I am in a positive frame of mind and hope to keep it that way through exercise and lots of faith in God. 

I am a fuly-time elementary school teacher as well as a wife and mother of two.  My biggest challenge as a mom with RA is that I can't do what I want, when I want.  Just because I plan an actifity, does not mean that I can participate in it or enjoy it as much as I would like.  Over the last 20 years, I have become less stressed in some ways and more in others.  Finding balance is a great challenge. 

It's hard to sum it all up so succinctly, but that's the gist of it.

Michelle