So I am currently tapering off just 5mg of prednisone… I’m starting to get my night sweats again and I toss and turn feeling so restless. I constantly flare up even being on medical leave from college and not working, resting all the time. I am going to see a doctor ordered from disability. I’m just feeling like the treatment I’m on is not working. I was told when I was a kid that the lupus will kick in in my 20s and the docs were not lying at all. I went to a concert and I was in my bed for 4 days after. I feel like the prednisone is making my hot flashes worse. Ive had them before I got on prednisone. idk what to do… I feel like everyone looks at me like a party pooper and I’m starting to get tired of ppl saying “but your so young” I feel like I hear it everyday which makes me feel embarrassed to take my meds when I’m around ppl. Everybody looked shocked when they seen my carry on bag with a ziplock bag filled with meds. I feel like they look at me like a pill popper. If they only knew how desperate you can get when your constantly sick. Any thing that can help you want to take not even caring about side effect. My rash on my face is getting so much more visible. I feel like everyday my lupus is getting worse. I noticed my doctors treat me so different when they see my labs and my medical history. They go from talking to me like any regular patient to this really concerned and serious tone. I feel so fragile lol my neurologist ordered all these test cause I been having severe migraine attacks and episode that last up to 4 days. I’m on gabapentin they raised my dose to 300mg 3x a day and I take fiorcet as needed. It helps and gives me relief but these migraine attacks still happen every week. ugh what to do…
::hugs warmly and gently:: I'm sorry to hear things have been so hard hon. I know it's hard, but you can't worry about what people think. Their thoughts on how many medications you are taking with you are completely irrelevant. I imagine people stare at someone lugging a cello through the airport as well. Needing medications to be well is nothing to be ashamed of at all, just like a cello. We shouldn't have to feel apologetic or self-conscious for doing what we need to in order to feel well! (And don't let me fool you, I hate to draw attention to myself when I don't feel good too. I'm very self-conscious as well, though about different things. So I'm talking to myself as well as you!)
I will keep you in my prayers, that your doctors are able to help you feel better and resolve as many issues for you as possible. Hang in there hon! You are not alone. ::hugs more::
Thank you so much Talencia! I really needed it… Your in my prayers as well xoxoxo
Good Morning Crystal, I am sorry you are going through so much. I agree with Talencia that it is nobodies business what we need to do for ourselves and yet I don’t like to wear a hat let alone all the clothing that would be helpful for me to wear in the sun. I am self conscious of how I look to others. This time of year is most difficult for my lupus. I am going to a hypnotherapist to see if we can clear out any reason for flares . I will post my results. I just finished a book called Warrior Pose by Brad Willis a true story I had found inspiration from the book to begin meditation something I have NOT wanted to do. Thank you for your post it has reminded to not care what others think and do what wil be helpful for my health . Wishing you a wonderful day!
Hi Crystal, I am in my 3rd year with Lupus and I had to learn the hard way that the Sun is not our friend and it can make us have migraines and TMJ in your jaws. I too have to wear protective clothing such as UV coated hats, a face masks to keep the sun off of my face because I will that Butterfly rash and I coat my whole body in Sun block cream. You should see the looks on people faces and the cashier when they see a Black Woman buying Sun block like they didn't know that Black People also burn in the Sun or can be Photo Sensitive. You can not worry about what is in the minds of others, just follow your Dr. instructions and keep yourself as well as possible. I know that it stinks but you will have to limit the amount of time that you spend in the Sun it is our Cryptonite, you will start to feel weak, tired and foggy brained if you are out there too long. You also must take folic acid and vitamin D3 along with a multi-vit everyday, please discuss your supplements with your Dr.
Having a good Support System helps and you may want to think about removing un-neccessary stressors in your life such as stressful people who mean you no good, ( this is the Okie in me, lol) talking, I had to Divorce my no good Husband, he was the biggest stressor in my life and I keep my true friends and family close to me.
Hope this helps and God Bless you have peace in your life.
Crystal, I read all the responses and it's hard to add any better advice! I am an older "Lupan" so I have learned not to worry much about what others think. All the comments of the well meaning people (e.g. "you don't look sick, you are too young to have this") fall away to what YOU know to be true. Keep posting and reading discussions on this site and any other place you can find good info. Peace and love to you, Lupancatwoman P.S. I carry a zip lock bag with my pills and supplements anytime I go out to dinner and lots of people stare at me including the wait staff and customers! It doesn't bother me, because I'm so used to doing it and at this point I would drive myself nuts if I worried too much about what others think! It's too much stress!
You have to retrain your mind, so that the abnormalities others see from a young beautiful lady, to ignore their looks and remarks and see yourself as a young lady dealing with a chronic illness the best way you can and still have a quality of life to enjoy trips away, dinners with friends spending some time out doors and taking care of yourself. I am going to grips with this myself.
I’m sorry that your doctors were right, having gone through puberty etc… with this I had the same thing happen. The one thing I really wish I had done back in my late teens and 20’s was to make friends with other people my age who were battling “invisible” illnesses also. That way I would have had friends who “got” it and would be understanding if I had to cancel or switch to hanging out and watching a movie. Not that my close friends minded but those friends moved away. Are there any support groups in your area? Or maybe your doctors know of some other younger people with similar disorders? I just know that I could feel lonely at times. Back then there weren’t online support groups to vent on and get comfort from. Hang in there. Do try to get outside even if it’s only for 10 or 15 minutes. It really helps me clear my head. Gentle hugs, Annemarie
Prayers and hugs for you Crystal!
Thank you everyone for all your wonderful advice! I got back a week ago, but been in a consistent flare up. Thank god I made beautiful memories on my vacation. Looking through pics and watching videos I made is helping me through my crappy flare up. Reading all the comments really brightens me up inside <3