View Full Version : This is NOT what I signed up for

05-03-2011, 07:53 PM
After 15 years of denial of what I was told was Rheumatoid Arthritis, I finally decide to get my act together and take better care of myself only to find out it isn't RA after all but LUPUS. The good news is that explains a lot that RA didn't cover. HOWEVER, I swear, since the diagnosis, my body has gone into over drive to prove the diagnosis right. Yes, the sun has always made my joints hurt more and I've always been susceptible to sunburn as I am very fair, very blonde (well I would be if I didn't change colors like a chameleon) and very blue eyed, so yeah, me and sunburn go way back. BUT now my wonderful body has taken up itching when I'm in the sun or under strong florescent lighting and any exposed skin turns bright red shortly after being struck with sunlight. Not burned but just bright red until I go inside and I return to my beautiful pasty self. My face, after exposure feels like I've been slapped repeatedly. I look it too. No makeup can cover that up. WFT?!?!?! I'm NOT a hypochondriac. Jeez, even hypochondriacs pick much more "glamorous" diseases than Lupus. I'm not an attention seeking drama queen (I leave that to the experts of which there are many). I feel like my brain has decided that once the disease was validated with a diagnosis, my brain opened the Lupus symptoms floodgates and the party is on. I hate hats. I hate hat head. I hate long sleeves. I am going through "the change" and don't need any help over heating. I don't like my lifestyle determined by the whims of Lupus. We've had a very long winter here in Montana and the weather is FINALLY turning nice. I have cabin fever to the extreme. I can't wait to get back to Glacier National Park and go kayaking and hiking. I guess I'll now plan my wardrobe around what goes best with red. Obviously, I'm not dealing well with Lupus. I've not come to terms with it yet. I was almost getting used to the idea of having RA when this hit. I miss RA. RA only hated my joints. Lupus hates everything. Evil Lupus. I didn't sign up for this. I want a do over!!!

05-03-2011, 10:01 PM
Sweetie, I understand completely. This beast does change our lives. I'm also frustrated that I can't do many of the things that I used to be able to do. However, I just don't let it totally stop me. I still travel and enjoy life, but I've learned to use a cane and wheelchair when traveling, and to take it easy when my body needs rest.
I'm dealing with menopause, too. Sometimes, I don't know whether my symptoms are being caused by that, or my AI disease. I guess all we can do is hope that once we get through menopause, our symptoms will calm down a bit - Let's keep our fingers crossed!

05-04-2011, 12:59 PM
LOL I already like you ruziska! I understand the sentiment completely. I am not so sure if the disease is showing itself more though. I think it just kept getting worse until I couldn't ignore it any longer! I went through surgical menopause 15 years ago so I also understand the heat issues. Add that to the fact that I live in Texas and I have to stay in more during the summer.

Enjoy your sping/summer because I hear it is lovely there this time of year. Don't forget the sunscreen though!

05-06-2011, 01:33 PM
I want a "Do Over" too!!!!! (((HUGS)))

Linda From Australia
05-06-2011, 06:55 PM
I know how you feel. I was diagnosed a year ago in June, and with meds I started to feel better. I too started to get pretty sick soon after being diagnosed, but I think that was because it took some time before the meds start working.

Now I am starting to feel pretty sick again. Not sure why. I think I am going through the grieving process, but I am not sure what stage I am in at the moment. I seem to fluctuate between stages. I am trying to adjust to the new 'normal', whatever that is.

My husband and I enjoy going on long walks together, and going on holidays. Now that is rather impossible. We have been trying to work out how we can continue with the idea of taking long walks together, and going on holidays. We just have to make some accommodations so we can still have fun.

You said you can't wait to get back to Glacier National Park and go kayaking and hiking. I am interested in hearing some of the strategies you take to still enjoy those things, because we also enjoy kayaking and hiking.

05-07-2011, 07:33 AM
You said you can't wait to get back to Glacier National Park and go kayaking and hiking. I am interested in hearing some of the strategies you take to still enjoy those things, because we also enjoy kayaking and hiking.

Strategies: stay at a KOA campground as they have excellent facilities and the cabins I like (hopefully get the one I want reserved) are closed to the restroom/shower facilities. Have a husband that goes into "nursemaid/protector" mode and does just about everything. KOA also has a hot tub which I take full advantage of. Get a 2 person kayak and let hubby do most of the work if necessary. Glacier has a beautiful trail that is ADA compliant and gives me enough of a hiking fix that I don't feel I'm missing out. I don't like to go back country hiking anymore as it is bear country and face it, slowest person becomes lunch and that would be me. Have a detailed packing list and make sure I have everything on it: meds, "Lupus kit" which includes sunscreen, painkillers, tummy meds, cane, hat, sunglasses, anti itch cream and so on. I'm way past the age of vanity, so I now wear what is comfortable, not what is necessarily fashionable. Comfort first, looks second. Good all terrain sandals are a must, as are yoga pants and oversized men's long sleeved tshirts which I've added my "artistic touch" (I love tie dye!) I also take my air bed as the beds in the cabins are not that comfortable and my own sleeping bag and special pillow. The main goal of the Glacier trip is to relax and rejuvenate so knitting and a good book are a must. KOA also has wifi and I'm crazy enough to want to go online but yeah, that's not going to happen. I do however take my iPod which has been proven invaluable in helping combat brain fog. The med reminder app and list apps save me. Coping strategies aren't hard to do when at Glacier and on the water, I can actually, for a brief time, forget I have lupus and feel "normal" again and that's the whole point of the trip for me.

05-07-2011, 08:26 AM
Hello ruziska,

I actually sympathize with you a great deal refering the sun and what it's doing to you, i'm in the same boat myself at the moment and finding i had lupus 3yrs ago came of a sock to me and the added bonus was being told i was born with it, after years of ailments connected to it,
how do you react when it's cold weather?? because if you skins bad then and you feel the cold badly you could have Raynauds, sorry if you think i'm putting a downer on you i'm not, i'm just trying to help like the rest of the member's as there's so many things and symptoms linked to Lupus.
Since i was diagnosed within the last 2yrs my symptoms are going mad with my body like yourself, i find each day a total struggle.

(((Hugs)))) Terri xxx

05-07-2011, 04:47 PM
I live in Montana where unfortunately it is cold more often then not. How do I handle the cold? Cashmere. Layers and cashmere. Seriously. My hands, (see post under symptoms) don't care what the weather is like. Cold or hot, it makes no matter. My joints and skin prefers winter, my mind prefers summer. My joints and skin love being covered up, my mind wants to wear as little as possible and still be legal. Where I live is 3200 feet above sea level and if I go up into the mountains, it is obviously much higher. The air gets thinner and the UV gets stronger. When I was living in the Philippines I could lay out all day and get the most amazing tan (the good old days of my 20's), here 5 minutes out and I'm beet red. Ah well, tis a lovely shade of red and I wear it well -LOL.

05-08-2011, 10:55 PM
I was just worried with you getting affected with heat, that coldness may do the same.

I'm totally fedup with this lot YOU CAN'T DO THIS YOU CAN'T DO THAT i feel sometimes like we're all missing a cell.

Well like yourself the tanning days of gone and just sitting in the shade for 10mins, the winter's here are miserable and looking forward to the summer as always been a nice bonus, not no more constantely inside ahhhhhhhhhhh i could scream with this lot.