Introducing my blog...... BLOG 462

Thanks for taking a few minutes to check out my blog. I have thought about starting a blog for a few months, God knows I have a lot to say about a lot of things. This first blog will let you know a little about me.
I was born in Hutchinson Kansas in 1965....do I still have your interest?
Seriously though, Hutchinson Kansas is my hometown and I am living back in what locals call the "Salt City" ( due to all the salt mines under our community--miles and miles of underground salt mines), after most recently living in Lenexa a suburb of Kansas City.

I had the best job and worked for the best company in the entire world unitl January of 2008.
When I  woke up one morning late September  2007,  I had the worst pain in both of my shoulders and upper arms. I could not lift the sheets off of me without incredible difficulty because of the intense pain--it was an dull achy pain that was constant and miserable and it intensified with movement or resistance.

I had been seeing a rhuematologist for arthritis in my knees so I called and was able to get an appointment that day. My doctor was on top of things, he knew immediatelt that I was hurting and was concerned that with my family's arthritis and auto immune history something serious might be going on, especially with the symptoms I was describing. He immediately ordered tons of blood work,  xrays and some specialized genetic testing to see if I had a gene that could possibly allow me to get Ankylosing Spondylitis, an arthritic disease my father had.

I worked from home while wating for the results of my blood work as I couldn't travel.  My job required me to travel 3-4 days a week and in no way could I schlep a computer bag that weighed 35 lbs and luggage while flying all over the Central US.  It took about 10 days to get the specialized tests back. The great thing was even though I couldn't travel,  as long as I had a computer and phone I could work anywhere. I just wouldnt be in front of customers for a while and my company was incredibly understanding as I was one of their topgys. I went back into the Dr's office after they call me expecting the hear the result and they had found something and I would need to do this and that and I would be fine. That day, unbeknowst to me would be the beginning of my medical mystery.

The results were negative for my fathers disorder and many other significant non-curable deadly diseases that he had tested me for. Muscular Dystrophy, Polymyositis, Lou Gehrigs disease, HIV and several others were all ruled out...THANK GOD! The arthritis indicators that were also tested showed some elevation and he thought what I was experiencing might be arthritis moving into my shoulders. He decided to treat me with non-steriodial anti-inflammatory meds, steriod injections and pain pills. He injected me in both shoulder joints on a Friday and by Monday I was a NEW person. The pain was almost nonexistent........for about 2 weeks.

The Dr continued to test my blood  every month looking for changes; nothing was changing except for my pain, it was getting worse and it was actually moving on to other joints and tendons. It was always on both sides of my body not just one side, it was like it was mirroring itself. The steriods made me feel great  for 2-3 weeks, he couldnt keep giving me the injections so he started me on prednisone orally. That worked well with my other meds and made me feel better but I was packing on the pounds and being very nasty to loved ones and my friends tat really cared about me. I was also seeing orthopaedic surgeons, neurologists and physical therapists to try and find out what was going on with me as I was getting frustrated and  he knew it. I had 3 months of vacation I  had to use while all this was going on. I was so lucky that my company worked with me while all of this was going on, anyone else in any other company would have probably been let go.

Hers is the kicker.......

It is almost 3 years since my health started giving me problems.I have been treated for Erosive Rheumatiod Arthritis, Rheumatiod Arthtitis, Fibromyalgia, Osteo-arthritis, developed sleep apnea, gained 60 lbs from the massive steroid usage, been  to Mayo Clinic, 4 Rheumatologists, 2 Neurologists, 3 Orthopaedic surgeons and I still DO NOT have a diagnosis. PLUS......
The initial pain has spread from my shoulders and upper arms to my wrists, fingers, neck, hips, knees,   ankles and feet....and I still do not have a DIAGNOSIS or TREATMENT PLAN to get me better so I can be a productive part of society and get back to work, back to my dream job! VERY FRUSTRATING!!

Again, thank goodness for my company, they had a disability retirement type policy that they had on all of the middle managers and executives which has saved me from financial ruin- if they hadn't cared I would be screwed...

My bloodwork has not improved, it has actually gotten worse - it still shows significant inflammation and things that are not normal. One recent item is that my Vitamin D level is 5, the normal is 80. I will be seeing an Endcrinologist at KU Med in Wichita towards the end of the month.

The reason I tell you all of this is so you can see my reason for wanting to blog. I have had 3 years of feeling like poop to think about many things from when I was a kid until now. There are lots of great stories to tell and the things that are important to me I want to share .  I have developed several thoughts on several things, and NO not just politics, religion and gay rights.LIke I said,  I have many thoughts and ideas I want to share so I thought  to myself, what better way to share them then through a blog.

Hope you comeback and check in from time to time, this is great therapy for my mind- and you just might find my blogs to be pretty interesting......

Have a wonderful Labor Day weekend- Fall is in the air here in Kansas, it will be a perfect weekend  weatherwise!

JP