View Full Version : A little more about me (long)

01-10-2009, 05:22 PM
I have been reading through the topics here, and I feel exactly the way so many of you described. I need to see the Rheumy for an "official" diagnosis, but anyone with any experience in Lupus can look and me and say, Yup, sorry. I have a "slight" Malar rash on my face. I have many different rashes in many different places, red bumps here, lesions there. My hair has been falling out at a surprising rate, and not just the hair on my head. Many places that needed shaving before don't need it so much now. I am swelled from head to toe. My fingers look like unappetizing sausages. My skin changes color without warning, Hubby calls me a wife of a different color. I can't sleep, I can't stay awake. I can't eat but maybe once a day, if I dose up on phenergan. I don't even dream of going out in direct sunlight, nor into the cold or heat. The pain that has been called Fibromyalgia for years has become more than Fibro explains. And the migraines do not respond to anything but vicodin or morphine. Everyone has a cold? OH CRAP!! Don't touch me, don't cough on me, don't come near me, cuz it will NOT just be a cold for me. Pneumonia, bronchitis, yuck! Can't walk to the mailbox, my legs are either too weak, or they just hurt too much. Jeans and other such material are a no go, I wear soft sweats and cotton tshirts only, no matter where I'm going. I own a multi-level house, bad idea. 8 steps up, 8 steps down, or 16 steps to get something. How's about I stay here and hubby fetches for me!! On the medical side, protien c reactive high, thyroid "just a hair" high 3 months in a row. Near constant UTI. Lots of confusion..wait, what was I saying...oh yea, can't remember a darn thing. Pain clinic doc noted swelling, loss of motion, skin discolorations, etc. Said to see a rheumy cuz he can't help til he knows for sure. Thanks a ton. Did I mention I can't get insurance? Guess I'm off on the SSI adventure. My last eye exam, higher than normal pressure in my eyes, great, another symptom to add to the list. My sister says I'm smurfmorphing, thank goodness for humor or I'd never make it! If you made it this far, thanks for listening, and I appreciate any feedback!

01-10-2009, 06:35 PM
Hi ShellyZ and gentle hugs to ya.

Ask your doctor if you can take Cold FX, just check with them that it wont affect your other meds.

If some one so much as sneazes or coughs around me, I start taking that stuff right away.

It's expensive, but I haven't had a cold in over a year and a half. I love that stuff.

01-11-2009, 09:40 AM
THanks Sitc, I will ask about that (makes a note). It would be nice not to have to worry so much

01-11-2009, 10:02 AM
Shelly!!!!!!!!!!!! I understand completely!!!!!! I had to giggle when you were talking about colds, I swear I a have one from October though April!!!! I live in a condo with three levels. I actually did not decorate the living room for Christmas, I decorated my bedroom and bathroom instead! That is where I spend most of my time so it made sense :D It seems like it is so hard for us to be comfortable....sleep, no sleep......hungry, can't eat :( I am going on my second night of almost no sleep and I do not think I will make it out of bed today :? It is frustrating and hard but we will get through this. I really believe this disease is only given to people who can handle it. This allows me to not ask why. I look around and say to myself that I am special and there is a reason I can handle it and the person next to me can not.........we may not understand that reason right now, but one day we will figure it all out :wink: Until then, we stick together and look for answers as a team. Hang in there and stay out of the cold :angel:

01-11-2009, 12:11 PM
Danica01, we decorated one room, the room that the kids play in, and where the computers are, there is a bathroom right here too, so it's where I spend my time if I can get out of bed and down the 16 steps. And yes, it's frustrating and hard, but I have so much support, from bydls, here, and my family and friends. I dearly love the message boards. I get so much information, and I feel so much less crazy!! No matter what the doc says, I know it's not just me, and it's not all in my head. I do so appreciate your upbeat and giggly response, made me laugh. Can't wait to hear from you again!

01-11-2009, 01:24 PM
Hi Shelly,
Welcome to the site. My name is Kathy and I completely understand where you are coming from. I have SLE Lupus and have had it for some 45 years. I just turned 50 last month, so basically I have had it all of my life. I hope that the Rheumatologist will sort it all out for you and get you on some medications that will help you. I hope that you keep posting.