Wednesday, February 3, 2010

Whoa, Nelly!

It's been a while...I know. A lot has been happening, and right now I will do my best to slam out an update.

As most everyone knows, Ted and I were engaged on Christmas Eve. We have set a date...March 21st! It's going to be a VERY small ceremony--an Army chaplain is going to come out to a location of our choosing and do a short (nonreligious) ceremony. We are planning on throwing a big party at his parents' home at the end of August, so save the date--it will be the weekend of the 28th/29th!

As for the neuropathy--I had an appointment on the 7th of January with Dr. Walk, who specializes in distal neuropathies such as the one I am experiencing. At the time, he felt that we should be exploring some other options, namely Sjogren's syndrome (an autoimmune disorder), fibromyalgia (widespread pain disorder) and rheumatological disease processes such as rheumatoid arthritis. He also said that he could not rule out the possibility of this being a type of muscular dystrophy (such as the one my mom suffers from). He ordered several blood tests to do a few different immune assays, look for blood markers that would indicate fibro, and also to look for the presence of enzymes that would indicate a dystrophic disorder. He also ordered another, very specific, EMG to be conducted on my right hand to see if he could find a conduction block in my right median nerve (the nerve that runs through the carpal tunnel), as well as a referral to an orthopedic surgeon and a rheumatologist, and a referral for occupational therapy. He also changed my pain management protocol. I am now taking amitriptyline daily and tramadol as needed for pain. He did give me some definitive information--the atrophy of the muscles and the severe nerve damage in my left hand is permanent and very likely progressive. My right hand may be in the same boat. He feels very strongly that anything requiring dexterity and strength of my hands will be very difficult for me to do. I saw him again last week for the EMG, and we went over a few things. My bloodwork was mostly normal--although there was an elevated CPK level. CPK is creatinine phosphokinase, an enzyme that is present when there is muscle destruction. It is normally only elevated in bodybuilders, people with moderate to severe injuries, and people with muscular dystrophy. CPK cleans up dead and dying muscle tissue. We will re-check this in a few weeks and monitor it. If it continues to be elevated, we will skip over a lot of the diagnostics (since most have been conducted anyway) and right to a muscle biopsy to look for indicators of a muscular dystrophy. The EMG is very suggestive that this issue is related to carpal tunnel syndrome--which neither of us is very confident about. His lack of confidence in that kind of diagnosis is very apparent, but he can find nothing at all that would suggest otherwise. He is as frustrated and confused as I am. So, we will see what Dr. Putnam (the orthopedic surgeon) says. We will probably go ahead with the carpal tunnel release surgery on my right hand and go from there. Dr. Walk and I are both worried that we will do the surgery and the atrophy and loss of use will continue, but he cannot see any other indicators that anything else is wrong. It is possible that carpal tunnel syndrome is wholly responsible for the nerve damage in my left hand--the nerve may have been so beat up for so long that by the time I had the surgery it was already too late to save it. It is also possible that there is something else going on, but because we don't know what that might be, we have to start somewhere. So, I will probably be having surgery at some point this year on my right hand.

The new pain meds are working, but I have had to have my dosage increased to manage the pain properly. There are side effects, but they are very minimal--mostly weird dreams and drowsiness. The tramadol I cannot take at work because it makes me too sleepy, and that is just downright dangerous. I am back to one day a week now that classes have started again, so I manage. Occupational therapy is all about showing me how to cope with losing the ability to use my hands normally, and has been quite helpful. We are also trying kinesiotape, which I have used before. Kinesiotape is a stretchy, sticky cloth tape that is placed on the skin over the spots where sensory nerves reach the skin. It uses the sense of proprioception to fool the brain into ignoring signals from certain nerves in an area of the body. Proprioception is all about your brain interpreting important signals from ones that it can overlook. For instance, proprioception allows me to type without looking at the keys. It also allows us to keep our eyes on the road while we drive--if proprioception didn't exist, we would have to look at everything that is passing by and wouldn't be able to pay attention. It also allows us to tune out the signals from our skin sensing our clothing, which is the very signal that kinesiotape is attempting to manipulate. By training the brain to ignore extra signals it is receiving from my hands and arms, we are able to manipulate it into (hopefully) ignoring the sensation of pain. I've been wearing it for two days and I think that the combination of the pain meds and the tape is working--I don't feel as painful as I did even a week ago. This may be incredibly helpful.

As for my vet school chances...well...I don't like to think about that right now. I don't know that vet school will be a realistic possibility for me. It is downright dangerous to work with horses (or any animal, for that matter) when you don't have hand strength. We will see what the next year brings; at the very least, I am going to have to put off applying for another year while we play the waiting game after surgery. Please don't ask me about this, or try to blow sunshine up my butt (sorry for the rude analogy) by telling me that there are still things that I can do in the profession, because I know the reality of my situation. The reality is that if my right hand fails me as well, I will not stand a chance to be successful in veterinary medicine. We shall see.

Enough about me. I received a devastating phone call from a very good friend of mine on the 7th of January. Her husband, a combat engineer in the Army, was killed in Afghanistan that day. I didn't even know what to say; I was completely speechless. He was a good man, a great husband and father, and a dedicated soldier. I felt so isolated and so far away from my friend (they are stationed in Anchorage, Alaska) that I decided within five minutes of speaking with her that I would make sure and attend the services. We couldn't really afford for both Ted and I to go, so it was just I that went. The services were held in Fort Lewis, WA, then we were escorted by the police and the Patriot Guard up north to Kent where he was buried. That was a very difficult day--the sound of the bagpipes playing "Taps" and "Amazing Grace" to the sound of the rain and of my friend mourning the loss of her soul mate was the loneliest, most heartbreaking sound I have ever heard in my life. It was almost too much to bear, but I had to remember that I was not there for me, I was there for my friend and her family. They have three sons, ages 6, 5, and 2. I can't even begin to tell you how heartbroken I am for my friend and her boys. I want to make sure all of you know that Jason was defending YOUR freedom; whether you agree with the war or not, you should always remember that he sacrificed himself as a part of his duty to defend our country. I thank him, as I thank his wife (my friend) and their three sons. Such a high price to pay to ensure the freedoms that many of us take for granted. You can read about him here: A memorial fund has been set up for my friend Tiffany and their boys with Wells Fargo. The picture at the top of this post was taken by my friend Susanne--she snapped some amazing and heart-wrenching photographs of the services that day.

Never forget. I won't. I am proud to have called Jason friend; I am honored to have known him. His loss will be felt for a long time, but he will never, EVER be forgotten.

I was in WA from Friday the 29th - Monday the 1st. As most of you know, I have been considering moving back to WA for some time now. This visit has strengthened my resolve--I now know that I belong there. I miss my friends, the people that have grown to be my family. My support system is huge there. It's not that I don't have a support system here in MN, because I do. I would miss my friends here terribly. But I hate winters here, and they are long. I miss the ocean. I miss the smell of evergreens and rain. I miss the places and people that used to be such a huge part of my life. I have reconnected with my oldest friend--we have known each other since we were about 7 or 8 years old. It was like I never even left--just like we had been talking every day for the last 15 years. I want that all back so badly I can taste it. I want to be closer to Tiffany (she is moving back to WA to be closer to her family). I want to be able to hang out with one of my best friends, Brian, as much as possible. He's like a male version of me. I want to reconnect with friends that I haven't seen in almost 15 years. I didn't have enough time to see everyone I wanted to see, and I'm disappointed about that, but I promise, I will be back. I just have to convince Ted that it's a good idea for him, too...for me, coming back here to MN was like leaving him behind. My heart aches and I feel so depressed and empty. I will miss all of my really good friends that I have made here, but I have found where I belong. I think I have always somehow known that I should be in WA, but it has taken an awful lot of maturity for me to realize that the BS is behind me and is going to stay there. Thank you to all of my friends, especially Melissa and Brian, for making my trip as wonderful as it could be under the circumstances. Tiffany--I <3 you and you know I will do anything you ask of me. The rest of you--you all know who you are--I will see you soon. Until then, let's not lose touch. I miss you all terribly.

I will keep everyone posted on the neuropathy front.
'Til then, take care!!



  1. Thanks for the update and congrats on getting engaged! I am a cancer survivor and I work for ChiliTechnology. The ChiliPad is a great invention for people who have medical conditions that make them too hot to sleep - it's a cooling mattress pad. You can set any temp. you want down to 46 degrees. It also heats - if you need that. Unlike the electric blanket it keeps the electromagnetic field far away from the body - so doesn't increase your risk of cancer or get in the way of healing. It really helped me during chemo when I was getting sweats and chills.


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