Just introducing myself...
Hi, I'm Kim. I'm 30 and live in Oregon and was diagnosed with SLE 2 weeks ago. I'm currently on my 4th second opinion, but the doctors are all being stubborn so I suppose it's time to accept it. I got the 4th lupus dx on Monday this week. I was so certain they had made the wrong diagnosis that I didn't consider it real until then.
I've been dealing with symptoms for close to 10 years but since they all occurred separately no one made the connection until I demanded my doc biopsy this rash I've had for more than 5 years. I thought I was allergic to the sun, thought I had chronic fatigue syndrome, rheumatoid arthritis...well, everything you can think of really. I was diagnosed with bipolar disorder and ADD 4 years ago and since then most docs have assumed my complaints were "all in my head". Looks like the problems with my head may not have even been in my head afterall. It sounds like a lot of the mental health issues can be related to SLE too.
I'm not taking any meds yet because we're waiting on some more detailed blood work to determine if I should take just the antimalarials or if they should throw in prednisone too. Back to the doc Monday for meds.
I've spent the last 2 days sitting at home staring at the wall trying to come to terms with this. It didn't help. My boss has been great an offered me as much time off as I need to deal with it. I decided I would be better off at work today, hoping a distraction would help. I go back and forth with "this is no big deal, I can handle it" and "I wanna crawl in a hole and forget this ever happened". I suppose that's probably normal.
I've done tons of reading on Lupus and I think I get the gist, but what I'd really like to hear is how it effects your day to day life....kind of a "what should I expect".
Thanks in advance!
Welcome to our family. Oregon is so beautiful; it's God's country. It sounds like it has been a long road for you. Many of us our sun sensative along with reacting to flourescent lights.
A couple of suggestions, read Daniel J. Wallace's book Lupus for Patients and Families. It can be purchased on Amazon very reasonably or rented from the local library. It has a wealth of information; not only is he the leading Rheumatologist in the nation for Lupus and it's related diseases, I always reference it from time to time at different levels in this illness.
Meds, hmm, I have a friend who was placed on Prednisone for over 15 years and the prednisone has ruined her organs along with weight gain of 100 pounds plus. She started having cardiac problems, and stopped taking the prednisone. I decided to take Plaquenil and I get my eyes checked every 6 months by an opthomologist. My basic insurance pays for the check-ups since it is considered "medical." I manage my Lupus with Plaquenil, and add Kenalog shots when in "flares."
Everyone is different and Lupus effects everyone differently. To say what your day to day challenges are going to be is nearly impossible. Joint pain when in a flare or when it is going to rain. Sometimes Lupus headaches, chronic fatigue inititally, and then I had sheer exhaustion when diagnosed with Fibromyalgia. I wear uv clothing (Coolibar) and hats when outside even when it's 115 in the Summer. Stay out of the sun and when it's overcast; it is not your friend at all.
I can't remember as much as I used to and have a tendency to "forget" things. Sometimes hit a wall of exhaustion; though I have to laugh. I put the peanut butter in the fridge and the jelly in the cabinet. I was really upset at first, but then when Oula said she had experienced the samething; I didn't feel sooo bad. When really really tired, I can't pronunciate words correctly. It's okay because it is usually my hubby and I talking.
Take one day at a time; and get lots of rest. Don't overdo it physically, you probably know what your limitations are. Enjoy the simple things in life because it might change next month, next year. Keep your faith and take one day at a time. I hope I have helped. It's not all in your head; that is simply not acceptable. Please feel free to chat anytime. We have all been where you are or are going where you have been.
Keep us updated and take care,
Thank you Faith, I really appreciate the response. I'll go look for that book!