Gettin down with the SICKNESS…

         I always considered myself to be the person that was “NEVER SICK”.  You know, that person that is so punctual that if they do not show exactly when they say they are going to be somewhere, everyone assumes they must be in jail or the morgue. I even had to wear a cast boot for 6 months and insisted on working anyways. My boss and doctors had to force me to take time off to heal my foot. Little did I know, that was just the beginning of a roller coaster that has broken brakes, and just won’t stop rolling. I told someone today that it was like being on that Graviton carnival ride. The faster it goes, the sicker you feel, but still you can’t get off.

     I guess I should go back to the beginning so I can really point out how sometimes the smallest pieces can eventually complete the biggest puzzle. In March of 1976, I was born the picture of perfect health. When I was about a month old I became very sick and had to be hospitalized. Of course I do not remember any of this, but this is the story I was always told. My Mother and Father split up when I was a month old and my sister was only 13 months older than me, and my Mother was having a rough time handling the stress of having a small toddler and a newborn. My tiny body was starving for attention and I became very ill because of it. I spent a couple of weeks in the hospital being 'Nourished" and was sent home again with a clean bill of health. Things were good until I was around 4, when one day my Grammy was drying me off after a bath and noticed that my lower abdomen was very swollen. She took me to the doctor, and it turned out that I had a double hernia that required immediate surgery. It also turns out that it was hereditary, both my Mom and Dad had the same surgery when they were young. It’s funny though, my long term memory is terrible, but I can remember so many parts of that time so clearly. I can even vividly remember the day My Grammy was drying me off and noticed the swelling. Other than that, aside from chronic nosebleeds and ear infections, my childhood was pretty much uneventful.

     By the time I was 20 I had 3 live births, 2 miscarriages, a tubal ligation, and a very painful uterus infection that landed me back in the hospital after my 3rd baby. And except from my period being heavier with worse cramps, pain during intercourse, and a few kidney infections, my life was very good health wise until I was 30. I was working more than full time and had a career that I was so proud to say I had. I started at the bottom and climbed my up as fast as I could. I prided myself in being an over achiever and I loved the “HYPER” side of me. At 24 I had an abnormal pap smear. I had a colposcopy, but due to an issue with my insurance, I could not afford to go back for the results. They called me a couple of times, but I still was never able to find out what the results were. 6 years later, when I was 30, the pain and bleeding during intercourse was worse than ever, but still, I just ignored it and tried to convince myself it was normal. F.Y.I. ladies that are reading this: pain and bleeding during intercourse is not normal. I was also having a lot of issues going to the bathroom. (#2)J  Every time I had to go it was like having shards of glass moving through my intestines. Anyways, back to 30, I was working as a General Manager for a KFC/LJS. I suddenly started having pain in my foot and then a bump. I knew I hadn't injured myself but the doctors insisted that I must have fractured it at work. They did x-ray after x-ray that showed nothing, but still they insisted that it must be a stress fracture. Well, their the doctors, and they should know what they are talking about. Right? Well, I ended up wearing a cast boot, while still working, for over 6 months until the doctor forced me to take 4 weeks in bed. Nothing helped heal my foot. Then my other foot started to do the same thing, only now both of my feet hurt everywhere and I was getting all kinds of weird swelling. Doctor after doctor, test after test, but still no one could understand why my feet so messed up. I knew in my heart that something was seriously wrong but no one seemed to believe me. It was during that time that I decided to see the gynecologist for a checkup. After endless amounts of tests and exploratory surgery, they decided that I had Adenomyosis and Cervical Cancer, and so on 6-28-2008 I had a hysterectomy.  The doctor said that my uterus was the size of a large grapefruit and was the most lumpy and hard one that he had ever seen. I also had a small mass around my cervix that was cancerous and cysts all over both ovaries. They sent my cervix, uterus, and tubes to the lab after the surgery and it turned out that the cancer had spread thru most of my uterus, and if they would have waited even one more month it would have been inoperable and I would have had to go thru chemo or radiation. (Praise God) Luckily I was able to keep my ovaries so I don’t have to take hormone pills. And so I thought the drama was over. I went back to work at a Taco bell as a General Manager and started working my way back up the food chain.
     In august of 2009, I decided to make some real changes in my life. I stopped smoking,  started eating healthier, and exercised daily. I was finally fitting back into a size 5, which I hadn't been since before the cancer drama. One day I got what I thought was the flu, and that’s when my auto immune nightmare began.  Like I said in the beginning, I NEVER got sick. So when I started running fever and having body pain, I just figured it was a virus that was going around. When it didn't go away I went to the doctor and got some antibiotics, but a couple of days after finishing them I was sick again. This soon became the pattern of my everyday life. I was in the doctor’s office every other week for about 5 months with “Flu-Like” symptoms.
      In between all the doctor visits I started having all these crazy symptoms. Hair loss, sores on my scalp, body and mouth ulcers, bumps from head to toe, butterfly rash on face, weight gain, extreme joint pain and swelling, muscle pain, extreme fatigue, sun sensitivity, and the list goes on. The Doctor decided to run a complete blood panel on me, including thyroid levels, and he did a Mono test. Ah ha, BINGO, my thyroid was low, so the doctor says “Take this pill every day and come back in 4 weeks”. Sounded easy enough, and so I did, and a month later my levels were back on track, but the pain and sickness was worse than ever, I couldn't sleep, eat, shower, walk, and forget about work. I had to work, every day, I had no choice. I had kids to support, but I could barely make it through a shower much less work the entire day. I arrived late every day and I left early every day. It was like living nonstop with the worst flu every single day. My body hurt so bad I couldn't handle even the slightest touch, and I couldn't wear my bra or anything else that was tight. I would get to work and try to do my job, but I just couldn't, I ended up in the office or in my vehicle asleep every day. My body was falling apart, my store was falling apart, and my life was falling apart.
     On Christmas day 2009 I drove my kids to their dad’s home which was 4 hours away. By the time I got there my knees were so tight that I could barely move them. When I got to his Apartment and changed into shorts, I realized my right knee had doubled in size. That was the day I knew something was seriously wrong with me. When I got back home from dropping off my kids, my sister and I decided to play internet doctor and made a list of every symptom I had. According to every computer site on the internet I had LUPUS. Of course, I didn’t believe any of it because there was no way that I could have a disease that I knew nothing about. I knew that I needed to talk to my doctor about everything so the day after Christmas I went in. Although he didn’t say it, he knew something serious was going on, that’s when he sent me to my first Rheumatologist. 

     So here is where the “Long story short” part comes in. After 2 and a half years of doctors, hospitals, lawyers, disability, and extreme sickness, I am still fighting the battle of (or should I say “for”) my life. Not only have I had to fight just to survive this nasty disease but I have had to fight insurance companies, lawyers, social security, and especially DOCTORS. I have been seriously mistreated and ignored by many doctors. So far I have been diagnosed with Lupus, Ankylosing Spondylitis, Fibromyalgia, Chronic Fatigue, Hypothyroidism, Degenerative Disc and Joint Disease, Osteoarthritis, Epstein Barr, Hypertension and Trigeminal Neuralgia. I was however very blessed to get my social security disability after only 4 months, but I am still fighting Cigna for the long term disability that I paid for out of my check every week. And even though I was able to get my social security, I am not eligible for Medicare until next August. (You have to be on SSD for 24 months to qualify) So I lay here in bed every day with no way to get to the treatment that my body so desperately needs, just praying every day that my body doesn’t give out before August and trying to provide my kids with the closest thing to a normal life that I possibly can.

     As with everyone that rides the auto immune rollercoaster, there is so much more to my story. I wanted to make sure that my first 2 blogs covered my life until the sickness so that everyone would be able to see what made me the person I am today. I also hope to really be able to share the truth about these diseases and how they can ruin the life of the person with them and the lives of all the people around them. And hopefully, in time, I will be able to share my walk into that thing that they call "REMISSION" that I have heard so much about.And now that that the "life story" boring part is all said, done, and out of the way, we can have some fun. Thank you to everyone that takes the time to get to know me thru this blog. Even if I can help one person it will be all worth it to me. Please comment or email me if you all need anything. Gentle hugs and many prayers to everyone. -Kimmy