I'm new. and I am feeling very pessimistic about this lupus thing. FML.
Hey everyone! I decided to sign up because I feel like I need a support group. I'm a 21 year old female who was diagnosed with lupus 3 years ago, but it never really got too bad until now. I guess I made a mistake but not taking the Plaquenil consistently like I was supposed to, so last year I worked at the bookstore at my college and got injured from lifting and sorting heavy books, which got worse from the lupus and from not exercising for a while. So my doctor prescribed me with prednisone. I made another stupid mistake thinking I didn't need it since I was getting better, then I got so sick from the whole month of December and January and lost 15 pounds. I also had e coli and a UTI which did not help and had to be hospitalized for 4 nights.
anyway, I had high protein in my kidneys and had to take cellcept and plaquenil which was very inconsistent. In June, my rhumey prescribed me with 20 mg of prednisone again so that it would kick in with my other meds and so my joints wouldn't hurt. She still kept me on the prednisone last month which I was very upset. I was even more upset last week because she only lowered it to 17 mg for 2 weeks, then 15 mg for 2 weeks until I see her. I am worried that she will just lower it to 12 instead of 10. The reason I am very upset is because I have gained a lot of weight. I went from 123 to 134 (I am 5'5") despite trying to exercise and eat better, and I feel like I want to give up because I am getting fatter (though I do love the way exercise and eating good makes me feel inside). I heard most of the weight is water, is it true? I really really hope it's not fat and I hope she can get me off of it by October (which is also when my birthday is) so that I can lose the weight right away. I usually have a streamlined face but now it's bigger and so is my stomach! My appetite is usually small and dainty but I feel like I could eat way more now! And my pants keep getting tighter, and I just feel so puffy and porky! I took the BIA body fat test last month and it said my body fat was 17% (which is considered really lean for a woman) but I am paranoid that it might not be accurate.
I hate prednisone also because it increases my body temperature and sweating. We had a mild summer in Sacramento but I feel like a waterfall! It was only about 90-something degrees when I went to the state fair but I felt totally beaten down from the heat while everyone else I was with was fine.
I am also really pessimistic about this whole lupus thing because it runs in our family, and my mom and sister have it too. My sister, who is now 35 has battled most of her life with lupus. She got diagnosed since she was 24 (when I was 10) few months after she had my niece, and she's had horrible episodes in the hospital, numerous close calls to death...but somewhere along the way she has fought through it all because of the grace of God, being under my mom's health insurance (which is really awesome because my mom works in healthcare and our hospital is one of the best in CA if not in the West Coast...and we get top of the line doctors and treatment), and support from loved ones. She goes to doctors appointments frequently, takes like 30 medications a day...I don't understand how she does it.
Also, I heard there is a connection between people with auto immune disorders are more likely to have children with autism? Because my younger sister who is 19 has autism. And so does my 11 year old niece (my sister's daughter). I am a little paranoid that if I have kids that there is a chance of that...also, Toni Braxton has lupus with an autistic son.
I just have been really needing to vent because yes I have my sister and my mom and they go through it with me (but my mom is super healthy despite having it) but I need more support...and I vent to my boyfriend all the time and he is sympathetic but I know that he won't fully understand what I really go through...he is always there for m though. and I know I have to have a positive attitude about it...it's just really hard when most of your family has some sort of health and cognitive issue (and my dad just got diagnosed with stage 4 lung cancer in April) and it feels like,"why is life so unfair?! why us?!"
I am sorry if this is way too long of a sob story. I just need to know that I am not alone in this.
Welcome, Chickie! Whew, your family really is going through the poopie stuff right now. I am so sorry that none of us can change that for you, but you are always welcome to vent and ask questions and read other posts that might help you with what is going on right now.
You have a lot going on, and I have to get to sleep, but I did want to respond and let you know that there are lots of people here who care, and that you are NOT alone. Here is what I'm going to say about the plaquinil and prednisone - TAKE IT! Get your lupus under better control so you don't end up on worse meds or in the hospital on really high doses of steroids. If you are wishy washy about taking it you will only confuse your body and never get things under good control - which means you will be sick longer and worser (sic ;o).
I am really tired, so if this comes off as harsh, I apologize in advance: your Dad needs you right now. So does your mom and sister and nephew. Now is the time to step up to the plate, take your meds just like your doctor has told you to, and focus on getting stronger. If you aren't as thin as you want to be on your birthday (most of us aren't), celebrate the fact that you have a good doctor who wants you to get better. Celebrate your family. Celebrate that your birthday cake tastes so much better when you are on prednisone LOL. You sound very determined, so the weight will probably come back off when you are on a lower dose. In the meantime, you will be better able to care for your dad and hopefully feel good enough to do the things that are important to you. Life isn't fair, so we just have to find a way to turn chicken poopies into something we can sell on Etsy.
Thank you! I have been very dilligent about taking my meds now because I do not want to have health issues anymore. I am annoyed that my rhumey is prescribing it to me but I can't be too mad because she is super sweet to me, and she genuinely cares. She always asks me how I am and stuff and we just click.
April was a very tough time for my dad because prior to getting diagnosed, he all of a sudden got sick for the whole month of March which we thought was stomach flu or gastritis but his symptoms persisted. He was in the hospital for 10 days straight and had to undergo radiation treatments and physical therapy. My mom was by his side the whole time while I had to watch my younger sister, and we had a few caregivers to come and help. We had to switch bedrooms because at that point he was way too weak to walk up and down the stairs (my old room was downstairs). The doctors gave him about 3-6 months to live. But he has gotten way better and stronger now, and can do normal things again! He did not have to go through chemotherapy; my mom researched for other alternatives, so he is instead taking a medication called Tarceva that only targets the cancer cells, not the good one like chemotherapy would. I thank God that he has overcome this and is able to live normally, but he still gets really tired and has to rest everyday which is understandable. And his tumors have shrank greatly! It is unbelievable.
Last edited by chicken_poopie; 08-23-2011 at 10:10 PM.
Reason: adding more stuff
it is hard to understand why some things happen.
when i was eventually diagnosed, i had 4 organs all involved.
i am now in a form of remission, whilst still on meds.
i know if i stop the meds, things will get worse quite quickly.
please think about your health first.
take the meds as prescribed, then you will be stronger and thinking clearer to worry about the other things.
i hope your dad recovers ok.
my daughter just underwent an operation to remove her cancer in ther thyroids.