It all started when...

So June of last year, about 6 weeks after the angel baby was born I got a little red spot on my nose. Looked like a zit except it didn't go away. Started to spread over my nose, cheeks, and chin. Got worse in the sun and was itchy. Went to a doctor and she said it was some sort of allergic reaction, threw some steroids at me and sent me on my way. After 3 weeks when it was back again (her drugs really never did much more than fade it a little) I went back to her she threw some more drugs at me and told me I should probably go see a dermatologist. Went to see a dermatologist. He wasn't sure what it was either. Gave me a script for some steroid cream. Went to see an allergist. He was determined to diagnose me with some sort of food allergy. I remember specifically asking him, "Is there any way that this could possibly be caused by something other than allergies?" "Oh, no," he said. "This is a textbook case of allergies."  The big idiot.

So my brother suggested that I see a naturopath of sorts that had helped my sister in law with some food allergies. I was pretty desperate by that time so I went to see him. I don't remember what his actual title was but I will forever lovingly refer to him as my witch doctor. Not because he cured my "allergies," but because he was the first to even suggest that I have some blood work done to see if there were anything odd going on there. He mentioned that many autoimmune diseases first manifest themselves as a rash.

Well, at this point, I was far beyond the rash. My whole face was red, my eyes were swollen, arms and hands were red and patchy and I was starting to experience extreme muscle pain and weakness. I couldn't kneel down on the floor because it felt like my thighs were on fire. I couldn't push myself up from a sitting position because I had no strength in my legs. Oh, and my hair was falling out.

So.... I went back to my primary care, demanded a blood test and a whole load of steroids for the road. A few days later they called me and said I had elevated levels of ANA antibodies in my blood. Simply put, something was wrong and I needed to see a rhuematologist, but oh, by the way, the local rheumys were booked out 6 months.

I have learned over the last 10 years that fear is a pretty powerful motivator and you can move mountains when you're scared enough. So I went into research mode and had pretty much diagnosed myself with Lupus. I went back to the local dermatologist I had seen earlier, who was very nice, but unable to help, and asked him to give me what is called a Lupus Band Test. It is a diagnositic procedure that would get me one step closer to knowing if Lupus was actually my problem. If I could determine that, I would know where to go next. He told me that he didn't have the equipment to do that kind of sophisticated test but would refer me to a collegue who could see me in about 8 weeks. Okay, better than 6 months, but after about 2 weeks I was so miserable and could barely drag myself out of bed in the mornings. My eyes were horribly swollen and hair was thinning quickly. I called the receptionist for this new dermatologist and basically cried over the phone telling her that I wasn't sure I would make it another month. She said there was no way possible she could get me in, but she did some calling and found an opening with another dermatologist, who specialized in autoimmune diseases up at the University of Utah in two days. I took it.

Two days later I went up to the University Hospital in all my glory, no makeup to cover up the leprosy, no glasses to cover up the swollen eyes. I was some kind of hottie, that's for sure. Anyway, they took me into an examining room where I told my whole history to a medical assistant and then told him that I thought I had Lupus and wanted to be tested for Lupus. He went out to "discuss" with the dermatologist that I was waiting to see. About 15 minutes later, Dr. Sontheimer walks in, pulls up chair and says right away, "It's not lupus."

Well, I am just staring at him thinking, "If you even mention the word 'allergies,' I'm am going postal this very second and you are going to see a fit of violence unlike any other." Lucky for him he didn't. He said, "You have an autoimmune disease called Dermatomyositis." Well that stopped me for a second. If I hadn't been so miserable, I might have been amused by the fact that he almost seemed excited about my diagnosis. I found out later that he actually was fairly interested in this particular condition, he's done a bit of research and has contributed to the medical literature in this area. He even whipped out a camera and said, "You know, we are a teaching hospital, would you mind if I took some photos for my students?"  Fine. Whatever.

Long story short, it is a condition very similar to Lupus. Don't really know what causes it, but basically one day my immune system up and decided it hated me and started attacking healthy skin and muscle tissue.   I asked him if I still needed to see a rheumatologist and he said, "Well, as a matter of fact, we are doing a combined clinic today and I have a collegue working with me who is a rheumatologist and I'd love to bring him in to meet you." I just about started crying. Ten minutes later Dr. Koening walked in.  Between the three of us we figured out what my treatment should be to give me some immediate relief and then where to go from there. And even better, they set up regular appointments with me (no more 6 month waiting periods)and different tests to monitor my progress. Dr. Koening especially called me after each test and spent a good 20 to 30 minutes on the phone with me explaining what the results meant, how he thought we should proceed and asked  how I felt about the progress of my treatment. I'm sure I'm sounding a little melodramatic, but these two men saved me and I will be forever endebted to them. Thank God for good doctors. There truly are so few of them.

So I'm about 5000 words into my explanation of how this all started and I haven't even gotten to the part that has to do with cancer, but I'm getting there. Just will have to wait. Going to bed.