Posted 6/24/2014 7:54 PM (GMT -7)
I don't even know where to begin... I'm a little overwhelmed but trying also to keep a positive attitude thru it. On Feb 20th 2014, I was diagnosed with SLE... When I first received the news I was actually relieved, I mean after all .. I finally had a diagnoses. However, this was after years of being told, it was all in my head (which I'm sure we have all heard at some time or another) or that I probably had a few autoimmune diseases, but they couldn't figure out what. At once point I was told I was a very special case and they weren't sure if they would be able to help.
It took sitting down with my boyfriend who has severe RA and bechets disease and making a list and doing research to find out what I may have. I found a new primary care doctor who referred me to the many specialist I needed to see. He was seeing a wonderful rheumatologist and she was the Specialist I decided to see when I had positive ANA in my blood test result.
She took one look at my face and hair and diagnosed me then, without seeing the blood-work results and so on.. I have a very distinct butterfly rash (although not unattractive,its constantly there) as well as Lupus hair.. you know the look.. thinning ... balding..
I was also diagnosed with arthritis, though at this point not RA (however it runs in my family, so we are keeping a lookout for any signs). While going thru some test, she became worried at the lack or rotation that my hips could preform and decided to get lung, hip and spine x-rays. (Lung - because in the last three years I have had pneumonia twice). When the x-rays came back - low and behold there was nothing wrong with my hips, except a little wear and tear, we found out that I have broken vertebrae in my lower spine. Yes, a broken back..
Went to a pain management doctor last week, and I am told surgery will not help me because it has already healed itself (we don't know when or how I broke it.) and since the cushion between the two vertebrae has been gone, two of the bones have begun moving against each other causing more damage to my back.
2 and a half years ago, I started gaining an excessive amount of weight and knew something was wrong, sure enough my doctor at the time, diagnosed me with hyperthyroid and prescribed me medicine, however he diagnosed me improperly and I only found that out once I changed primary doctors.
In less than 5 months, I went from working as much as possible to being told, I can no longer do the job I have done for over 10 years.
In less than 2 years, I have been diagnosed with hypertension, hypothyroid, diabetes, arthritis, SLE, DDD lumbar, and of course with all this going on, you can probably guess, I'm a little depressed (though don't often show it) and I'm also experiencing neurological issues with my lupus, so in 2 months I go see someone for that.
I'm scared, because I have shown many of the symptoms of lupus for many years, however I was only just now diagnosed with it. I'm scared because we are just not really learned the extent of damage it has caused, and I am only 32 years old. I feel I'm too young for all of this to be happening. I at time become overwhelmed and sometimes just need people who are going thru or have gone thru the same things I currently am going thru to help me go thru it.
I am lucky tho.. I do have a wonderful boyfriend who accepts me for me. We are working on the weight issue that has developed because of the wrong diagnoses, and he helps me shop for wigs and hats for the lose and losing of hair. He helps remind me when I need to take the 13 - 18 different meds I need to take. I'm not going thru it alone, but even he doesn't understand a lot of what I am dealing with. I am hoping you guys do.
I hope I get to know all of you over time ... Thanks for letting me introduce myself