Times Have Been Tough
I have been hinting and eluding to the fact that I am having some serious health issues that I am dealing with as of late. I will try to convey my experiences for the last two years here briefly as I can so maybe I can start helping people who share the same issues and who share the same struggles that I have. Perhaps I can even make the path easier for someone else.
When I was 10 years old I was diagnosed with Juvenile Rheumatoid Arthritis. I suffered from that all through my college years. I took several prescription and over the counter drugs to help with the pain but the one that worked best was Motrin aka ibuprofen. Although it worked, I had to take a massive dose of it in order to manage the pain I was having. I took 800mg every four hours which is basically overdosing every day. I took so much that by the time I was a junior in High School I had ulcers. That was a lot of pain. To fix that disorder, I had to give up greasy food and caffeine for two years.
I recall the first time after that two years that I had caffeine. I had an iced double mocha-chino when I was in college. I got so high off of the caffeine that I may as well have sniffed a line of cocaine. It was pretty wild and lots of fun. It was at this time that I started back on the Motrin. I forget what I was taking in lieu of the Motrin for those two years but I managed to get by. In college, the stress of living on my own and succeeding in academics, I was happy to have my Motrin back.
Things stayed the same pretty much up until three years ago. In the Spring of 2010 I felt pain again. This pain wasn't like an arthritis flare up that I had ever felt before. This pain was all over my body instead of in my knees and toes like it usually was. This all over body pain hurt...a lot. I let it go on too long and ended up in the emergency room. The doctor there didn't even look at me or touch me. He prescribed me a MASSIVE amount of Vicodin and sent me on my way telling me my RA had spread throughout my body. He said this is how it was going to be from now on. I accepted that diagnosis. I got a rheumatologist who put me on Plaquinil and my primary care provider put me on prednisone. I accepted these meds as being helpful because I had to. I was on my way to Europe on a two week vacation and I would have taken pretty much anything to not be in pain on that trip. I got through the trip just fine on lots of Vicodin and steroids.
When I got back from my trip I began a dance with my rheumatologist. I would slowly decrease the prednisone, the pain would come back again, I went back on the steroid, the doctor would put me on a new RA medicine and I would, once again, slowly decrease the prednisone dosage. This cycle looped maybe four or five times until I was on Methotrexate. I went to see the rheumatologist who, by the way, is said to be at the top of his field and highly recommended by many. The doctor looked closely at my knuckles and told me my arthritis is under control. Great News! No. Not great news at all. My pain was still there as great as ever.
It was then I suspected that perhaps that emergency room doctor was wrong and the pain I am dealing with is not arthritis at all. I went to my primary care physician and explained how much pain I was still feeling. He gave me more Vicodin and suggested I exercise. Well, the thing I learned about pain is that when you are in pain, doing anything is much more difficult, specially exercise. I needed more direction than that. I dropped my PCP and found a new one.
When I first met with my new physician I didn't mention Rheumatoid Arthritis at all to him. I attempted to give him the opportunity to re-diagnose me anew. He suggested Fibromyalgia and put me on Cymbalta. Cymbalta is a new drug ($$ a brand name drug I might add $$) that people take when they have Fibromyalgia. No one in entirely sure what it does but it is meant to help with the depression and pain that accompanies Fibro. I have never experienced depression much in my life. I have a problem with anxiety so I have always been acquainted with anti-depressants as those are in the same family as anti-anxiety meds. I went on the Cymbalta, gave it it's multi-week start up time to take action and felt nothing change. I called my new doctor and told him I am in pain, this is not working. We then played a nightmare game of phone tag where he told me to take Cymbalta, I told him I was, does he mean I should up the dosage and he would suggest I take Cymbalta...
What we have here is a failure to communicate. Here I am, in terrible terrible pain, the same pain I was on a year prior when it came on, with no change. Same pain only now I am on Plaquenil, Methotrexate, Vicodin and Methotrexate. Ummm, anyone see anything wrong with this scenario? I did and I was very unhappy.
Meanwhile, I was trying to live my normal life. I got up at 4am and drove the 1.5 hours to work, worked an 8 to 13 hour day and drove the 2 hours in afternoon traffic home. Only it wasn't that easy. I had to take 5 Vicodin to get out of bed. I had to take another few to get through my day at work. My day at work consisted of me delegating all my work to other people who were covering for me because all I could do is be in what I call the Dead Bug position. This is where I am in so much pain all I can do is curl up with my arms and legs bent like a dead spider on it's back. I would do this for the 8 hours when I then took another 5 or 6 Vicodin to make the drive home where I dead bugged on the couch until bed time.
Something had to stop. One morning, November 1, 2012 I didn't take my Vicodin to get out of bed....just to see what would happen. I ended up in the emergency room. This time I was admitted. They gave me 2ml liquid Dilaudid regularly until I got my pain under control. Then I got 1ml intravenously every few hours. That was the first time in 2.5 years that I felt like myself. I was able to walk around my hospital bed, I could think, I could feel good, smile, for the first time...LIKE the first time. It was pretty sweet. But alas, I could not and did not want to stay there forever so we had to figure out what was ailing me. This was also the first time I felt anyone believed me. I was elated. I had a team of doctors and nurses working hard to find out what was wrong with me. I got used to describing my pain on a scale of 0 to 10. I had every test under the sun done. Chest x-rays, MRIs, and tons and tons and tons of blood taken. I had an infectious disease doctor test me and a neurologist too. Turned out I do not have feeling in my hands and feet like I do in the rest of my body. This pointed to a neurological disorder but even after an hour meeting with the neurologist, no answers. The fact that I described my pain as feeling like molten lava or broken glass or acid burning through my veins made my team hang their hat on Peripheral Neuropathy. I was given Neurontin aka Gabapentin and released from the hospital.
When you have a team of doctors examine you for a week and not draw a conclusion as to what your problem is, they are at least honest, I guess, about your diagnosis. "You have chronic pain."
Thanks, great. I freaking KNEW that. I am the one that told YOU 2.5 years ago!! Oh well. There was nothing left for any of us to do so I was sent home on all my new, fancy, expensive drugs as well as Norco and Dilaudid in the pill form. Not long after I was switched from Dilaudid to Methadone.
The only option left for me is to MANAGE the pain I supposedly will have for the rest of my life. I was evaluated by a slew of doctors and was recommended for the top tier, most intensive pain management program my HMO offered.
This brings me to where I am today. I have not worked since November 1. I have disability until at least March 31 as I attend this 10 week class.
I wanted to write this blog to show I have not given up on my adventures, diets, missions or other whatnots I write about on my blog. I have merely been overcome by a very dark, very heavy, very painful raincloud. I am still here, I still have the same interests and wants, I am just having to work 100x more for those things.
/
0 comments: