It's been a long time since I've posted and I will try to update you in the shortest way possible. First, my arthritis conditions that I have and I have 3 - degenerative disk http://www.back.com/causes-mechanical-degenerative.html, Chronic gouty arthritis http://www.nlm.nih.gov/medlineplus/ency/article/000424.htm, and osteoarthritis in multiple joints including end stage in my knees are much worse. A bone scan reveiled my skeleton is pretty bent up and I have shrunk too.
What does this mean? It means taking loads of medications just to keep all of these issues at bay and dealing with daily chronic pain that is off the scale with as low a dose of pain medication as I can get by with in order to keep myself from becoming a pain medication junkie at 49. In September of 2004, my doctor asked me to switched from my 4000 mg of extra strength Tylenol a day (which was not handling the pain either but was tweeking my liver) to a lower level of Tylenol and Norco 10mg. I take approximately the same dosage of Norco that he prescribed for me back then, however he is getting very nervous in being responsible for my pain medication and has referred me, AGAIN, to Rehabilitation Institute of Chicago (RIC), for pain medication management and maintainence. I hope they will be able to help me. I still do the relaxation and most of the exercises that I was taught there. I can't do some of them any longer.
I was having a great time working at Sears socially speaking, however my body was hating it. My rhematologist did not want me to gain more than 3 pounds in one day (water retention due to only having one kidney). There were many times after working 4 or 5 days in a row where I had gained 8 or 9 lbs. I could not breath or walk because of all of the water in my skin around my diaphram and joints. If I would have 2 or 3 days off, all of the weight would be gone until I went back to work again. In addition to the weight, the pain became unbearable on those days until I could barely see. So after having worked there a bit over a year, I had to turn in my resignation. Since then, the swelling been there but not because of work but because of another issue.
I take a very harsh NSAID that my rheumatologist had to put me on in order to get my last gout attack under control. She tried to remove it once and I immediately had a gout breakout. So back on it I went. Now I am facing two surgical procedures. I must be off of this medication for the surgery and then for the duration of my life. When we took away one of the three pills, I immediately started getting gout symptoms and I have had swelling in all of my joints, I have limited to poor mobility in my neck and head, shoulders, hands, wrists, ankles, toes, knees, and hips. This makes walking, standing, and balance very difficult if not impossible. I continually fall and my joints give way all of the time making getting around very hard even with my walker because I have carpal tunnel in my wrists and pain in my shoulders which support me on the walker.
Now my poor kidney is not a happy camper. Having gouty crystals in the uric acid just is setting my kidney up for stones. My kidney levels are not good enough for them to even do tests on me with contrast. Even with me getting off of the medication, my kidney is still not happy.
Mentally I was handling this all fairly well until Keith lost his job and was out of work for 6 weeks. He did eventually find a job but the company he works for is one where you must work 2 weeks and then get your first pay check 2 weeks later. So in other words, no unemployment and no paycheck either for 4 weeks. We have a 700.00 plus cobra payment per month plus any other medication and doctor copays to pay. If we do not pay that, our only insurance is lost forever. It will be lost forever in October anyway. That is when the 18 months is over. Keith has been sending out a zillion resumes and has had up to 4 interview in a week. How do I know this? Because in my panic and depression, I have been on one search engine looking for jobs, while he has been on another.
Up until he lost his job, I was working, Keith was working and things were looking up for us for a change. Then my body "JUST SAID NO" and I had to quit. And Keith said don't worry, they have promised us work here until July. And then they came in and told him one day, sorry, budget cuts, and you have to be out at the end of this month. Then they came in two days later and said go home Tuesday. This is the 3rd time in 4 years Keith has been downsized or budgeted or merged out of a company - and big companys too. It is hard to budget long-term when you do not have a long-term income and have to start at ground zero every little whip stitch by selling all the stock you have bought for retirement or turning in 401Ks to pay bills during each layoffs.
So I am trying to do my relaxation exercises, tell myself I have done everything possible to help keep my little family together while basically being bedridden and in constant, unbelievable pain. Until you have had to deal with this for over 10 years like I have, you can't imagine how many days it is very difficult to, just once more, choose to open your eyes and face another day.
I have received unbelievable support from my visiting teacher at my church. She is always a loving ray of sunshine every time she comes to see me and it is such a blessing to me. Other than that, I don't really hear from anyone else. I realize everyone is busy and right now, I am just too sick body and soul to call anyone. I read other people's blogs and try to keep up when I can and post when I can, however I can only sit for so long.
I figure I will just put out our reality into the universe and see what comes of it.
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