Probably got your attention for all the wrong reasons there. ;) Sorry if I created some really bad mental images. I started this blog for several reasons… chatting about movies I’ve been watching, books I’ve been reading, God stuff, random blabbing, etc. However, for now I just wanted to answer a bunch of questions I’ve been getting lately… mainly, what’s wrong with me and why have people been asked to pray for my healing. I expect this will be my longest post on the blog, so bear with me this one time. ;)
When I was 16 (yeh, back in high school), my left knee started filling up with fluid. I lost a bit of motion, but it didn’t affect me too much until about a year later when it was filling up way too quickly. I went to our local doctor monthly to have it drained… oh man, was that fun. It was a painful thing to go through, but I had no pain and had full motion for weeks afterward. By the time I was 18, it was a weekly process, and doc was taking over 150 cc’s out of my knee each time (that’s about 1/2 a can of soda). Some of my buddies from high school might remember this, and how badly it affected my golf game my senior year (yeh, I’m a big whiner ;).
Anyway, I had the knee scoped my senior year and they saw arthritis in there but couldn’t really do anything other than perform a synovectomy to remove the membrane that produced all that fluid. This was 1993, and it snagged me a few more years of fairly normal walking. I finally got my golf handicap back down to scratch, started hitting those 330-yard drives again, and even played a bit of basketball at the gym in college.
I think it was 1996 when things started turning ugly again. I was getting up from a chair after class and felt something pop in my knee. I barely made it across campus to the health clinic to get it checked out. The place was so busy, I simply asked for a set of crutches and headed to my apartment. I ended up figuring out how to walk over the next few days (carefully), and the pain started to subside. I felt a lump under my knee cap, so I was scared to go to the doc… I didn’t really want to know. I found out later that I had some serious arthritis in there, and there wasn’t much to do about it. There was enough in there that I didn’t need fluid anymore to restrict motion… the arthritis did it for me. The junk kept building and building over the next few years.
In 2000, I finally had it scoped again (I was working in Cedar Rapids now, and they have some amazing surgeons). My surgeon described it to me as the worst knee he’d ever seen. He started looking around and had no idea what he was seeing inside (maybe I’ll scan pics in sometime). I still have a photo of the scope pics where he wrote “ACL?” He had no idea where anything was inside, and said the only thing I could do at this point was try to make it through physical therapy sessions and eventually have it replaced. Of course, he told me to wait as long as possible, since they wear out after 10-20 years and I was only 25.
I made it another two years. My son, Lafe, was born in 2000 and I could hardly play with him. I was “walking” (if you could call it that) with a cane in severe pain the entire time. My leg was basically a single bone as the arthritis had fused everything together at a 45-degree angle. It was not easy to get around. In 2002, I finally decided to have it replaced… I couldn’t get much sleep or concentrate at work during the day due to the pain. My golf game was long dead (yep, listen to me whine ;). Doc replaced it that August, and after several months of intense therapy, I was able to work my severely atrophied muscles to allow for about 10-80 degrees of motion in the knee. This was very walkable, and I even started playing golf again, though I had to ride a cart to be careful.
Fast-forward to 2005… over those three years, I started slowly losing motion again. For the longest time, I thought I was at complete fault for not continuing my physical therapy routines. When I ended up back at my surgeon’s office for a routine checkup that year, he let me know I was wrong. He could see a bit of arthritis starting in the knee again, but wasn’t overly worried about it. I tried to get some motion back, but couldn’t (well, T will probably point out I didn’t try all that hard ;).
In 2006, I started losing motion in my right elbow. That was a shock. I tried to ignore it, but I had to skip the golfing season due to the pain and the fact that I lost at least 20 degrees on the “straight” end of motion. Near the end of the year, I decided I needed to start looking at other possibilities than single-joint arthritis (my surgeon always wondered how only one joint could be that bad). I went to my family doc and he put me through a long slew of tests, including Lyme disease which I tested positive for prior to treatment but it was gone by the end (they say you can have false-positives). Everything else he tried was negative, so sent me to a rheumatologist.
I think it was 2007 by the time I got done with this new doc. He ruled out rheumatoid arthritis, which I took with mixed emotions… it would have been nice to at least know I had something many other people have. By this time, I was down to 25 degrees of motion in my left knee, 45 degrees in my right elbow, and my right ankle started to lose motion as well. Though all those joints looked like they were full of fluid, it was mostly arthritic junk floating around or swollen tissue. He wanted to put me on all sorts of liver-killing drugs without knowing at all what I had. I refused and waited several months.
Near the end of 2007, I visited my surgeon for a checkup again. My knee was almost completely locked up now, my elbow was down to about 25 degrees of motion, my ankle was severely restricted in motion (I have no real idea how to measure it) and my right knee was starting to fill with fluid. An MRI, ultrasound and many x-ray’s later, doc confirmed arthritis had completely grown around my metal implant in the left knee (wow), and the other joints were just plain getting bad (no major arthritis growth yet, though). He started taking my case around to several of the other doctors in the area.
This year, my surgeon’s office hired a new doctor who is apparently fairly famous in the field of joint surgery. They took on my case together now. When I went in to see the new surgeon, he had a name for what he thought my condition was, and I forget it. He says they have seen it in hips sometimes, where they may nick a bone and cells start growing around the bone, a bit out of control. He thinks I have that to an extreme manner, and explained to me he has never in his life seen such a thing affect a knee like it did mine. He explained that surgery to “correct” it would either involve amputation (which brought many other problems with such a condition), or cut away the bad stuff to a reasonable area and then start hitting it hard with radiation to kill the bone. Neither of those sounded fun at all, though there have been days when amputation sounds pretty good. ;)
They have now taken my case around the world, attempting to find other doctors with different diagnoses or possible solutions. The way this new guy put it, “I am sending your case to doctors bigger than Mayo. I am going around the world.” The emphasis is not mine. I never even told him I was considering heading up to Mayo at my parents’ request (a pretty smart one at this point).
That’s pretty much where I’m at as of this post. I have started walking periodically with my cane again (mostly at work or weekend trips, at least). I hate using it, but it really helps relieve pressure on an ankle that can hardly move, and a knee that can’t. At least my knee is locked at a 20-degree angle this time… which is far easier to walk than before my total replacement. It has been hard to learn to do almost everything with my left arm, due to my right elbow being almost completely locked now at 45-degrees. Brushing teeth is a pain in the butt… :)
If you made it this far, I want to let you know I am far from dying. This is not cancer (thank God). It’s just a lot of pain every day… walking, standing, sitting, sleeping. Advil can go a long way most days, but I don’t want to kill my liver or something, so try not to overdo it. My kids really want me to chase them around (which I still try to do at times ;), ride bikes with me, etc. T would probably like me to stop being a bum on camping weekends and actually hike around with everyone. ;)
When you are done praying for all the people out there dying of something, and you happen to think of it, please say a quick word for me. I could use the help. God is good. (And, I promise not to type so much next time.)Share on Facebook