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What was I thinking?
December 31, 2007 - March 2, 2008 |
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Tonight I take a break from posting the next chapter in the health update to pass along some sad/happy news. Barnaby Thomas Hamster if finally freed from a week of slow death. He died a pretty old guy. He was over 21/2 years old which is about 90 in human years. He has been getting weaker and weaker over the last month and by the end, I felt sad for the obvious pain he was going through. In a strange way, I feel akin to his struggle. Though it will be sad when I pass, at least the pain will be gone. With that thought, I bid you adieu Barnaby. You came home the most aggressive hamster we ever had, but became quite comfortable here in the apartment with me. I'm sorry for the struggle you had to endure over this past week. Now you are in "hamster heaven". Actually, I don't know if you're anywhere at all - "hamster heaven" is just a fun thing to say. Like a plush rodent kennel or something like that! Now I will consider if I even want to replace you. I likely will eventually. See ya, buddy. March 2, 2008 |
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The Much Anticipated and Dreaded SUNNY AFTERNOON Lunch time rolls around, which means "midday meds"! The hour of this dosing is the most variable of the day. Some days I need them at 11 a.m. and others I'm okay until about 2 p.m.. Normally this is also the most active period of the day for me. I'll head out in my wheelchair to run errands, visit friends, or at times journey to the library. When the weather permits this is also the best time to find me at the fishing pier. On the one hand, it is sad how much medication is required for me to just get through a day. While on the other hand, all those little pills are a God-send and allow me to actually experience Life. I know everyone wants me to be up-front about how things are going. I'm getting better at sharing those things... okay, so it's getting more difficult to hide the ailments. And I want to say that not only do I truly appreciate the Love, concern and prayer offered on my behalf, I am also very blessed to have the support of family and friends to help me cope and survive. But now I would like to take a moment to attempt to explain why I try so hard to mask the pain. I've been living with this damned disease for over 10 years now. Anyone who was around me in the beginning will agree that I was a suicidal wreck during those days. At some point I made a decision that if my life were to continue, I want to live it as positively as I could. This meant that the RSD would reside as much as possible on the back burner rather than at the center of all that I am. I've cultivated this philosophy for these 10 plus years so that I feel I can experience most of life as others do and work very hard to have my relationships be as real and "normal" as others experience life. This has borne in me a hunger for the "now", for the "moment". I know that I was in pain yesterday. I know I am in pain today. And I know I will be in pain tomorrow. None of those facts is very uplifting. What I can grab hold of though, is the "now". At this moment... I am safe. I am Loved. I have purpose. However frivolous it sounds, it works for me (most of the time). Yesterday can be sad. And tomorrow depressing. Both are large pools just inviting me to dive in. But I have decided to stay put in the moment, only occasionally wading into those other waters. So, when I'm around others and they seem more conscious of my struggle than the moment we are sharing; I feel like we are missing out on something. Conversation is thwarted by sadness and concern. The moment is lost. This is why I work so hard to downplay my situation. This is why it takes the anonymity of a webpage to get me to open up about such things. Moments still get lost (in writing and reading this as an example), but I put forth a lot of effort to not let the RSD get in the way of us sharing time together. Which brings us back around to this topic of RSD in the afternoon. As I mentioned above, this is when I tend to be the most active (interesting word to use for such a sedentary lifestyle). And for a variety of reasons, it is when I do the most damage to myself. Go figure. My body is a testament to irony. I can't stand for more than a few minutes at a time and yet, if I sit for too long, the pain can become equally as overwhelming. We won't even get into what can happen simply by laying down. The point is, that during those (in)active times, I tend to wear myself out the most. And not simply because of the physical strain I put on myself, but the mental as well. To get the most out of social interactions, I do my best to not allow my disability to interfere with the situations. But to do so, I expend an enormous amount of mental energy to keep the proverbial smile on my face. By the time I return to the solitude of my home, I am exhausted both physically and emotionally. So while I go over the afternoon's events, I find something positive that came out of my day. Its a little game I call "Silver Lining" and I recommend it to anyone who is working through a stressful situation. This is where I tend to find out the answer to the question I ask each morning of God. Somewhere in all the discomfort I put myself through, I find a bit of purpose. A reason. Which in turn becomes a carrot that makes me want to do the same thing again tomorrow regardless of the consequence. Because the alternative is lonely and useless. But hey - in the course of a day, we're only up to the 5 o'clock bell and the next installment of "A day in the life..."
to be continued... |
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The Much Anticipated and Dreaded MORNING HAS BROKEN I don't think there is a more painful time for me in the course of a day than the morning. Every day begins with conflict. Rise or stay put. I don't know what I do to myself in my sleep; but I wake up with back, hip and knee pains that sear through my body. "GET UP!" it screams to me. But as soon as I begin moving and sit up, my muscles relate to me a different opinion by cramping me to a halt. I'm sure this is similar to many elderly as well. But I'm not even 50 years old! My day begins with that struggle to get out of bed. then I make my way to the kitchen to take my morning cocktail of numerous medications. My walk is in short, careful steps with my back hunched over and my arms reaching out to the walls for security. Why not simply keep the wheelchair next to my bed? That day is coming - and all too soon in my book. But while I can keep as little as 10% of my legs, my stubbornness can make up the other 90% needed to get me to the living room. And of course the old adage rings in my head - "use it or lose it". In the kitchen I pour a cup of coffee and place it in the microwave to warm up. While that is happening I put together the cocktail mentioned above. It consists of large doses of Neurontin (for the skin-on-fire) and morphine (for the agony of beginning a new day) with a Prozac chaser (perhaps the most important ingredient of all) and other pills for cholesterol, diabetes and heart (to keep the Kaiser interns happy). Yummy. Fill a glass with water and swallow the whole mix down. DING! The coffee is ready. With cup in hand, I finish the trek from my bed to the living room where I sit and take a deep breath. It is here that my first chat with God takes place. And though many might think this a good time for me to start bitching about my situation, it is actually just a question. "What do You have for me today?" The bitching comes out during the course of the day but by the time I fall to sleep at night, it has been replaced by resignation that there is something outside of myself keeping me around. And if I believe that (and I always have), then I think it safe to assume that there must be work for me yet to do. Else I'm just a waste of clever molecules. That is a choice of course. Some would chose to live out a life with a disability by becoming bitter and angry at everyone and everything to the point that they spend their days alone and alone. Many have heard me say that I choose to smile rather than frown because it's just more fun. But that isn't all there is to it. Unfortunately, like most things spiritual, I can't explain why I choose to smile. It just "feels" right. By about 11AM (10 if I'm lucky), I feel good enough to interact with the world. Most days, I've already had breakfast and a nap before noon rolls around. And with the help of medication, I can usually function at a tolerable pain level and begin to feel useful again.
to be continued... |
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The Much Anticipated and Dreaded Last year this wasn't finished until March so I figure this counts as starting off on a positive note.J In trying to get myself to write this bit of information, I went back and read what I had written last year. On one hand, I could just use the same posting for this year. Then there's always that damn other hand. And what its holding isn't all that pretty. Which is not to say that I don't have anything significant or positive to share; but as expected, 2008 sees me another year older and another year weaker. In some ways I feel like I've come full circle. What I mean by that is that the feelings I experienced in the early days of my struggle with RSD were filled with dread, confusion and frustration. I came across a (actual manila) folder filled with emails and information about RSD. The pages date back to 1997! Lots of messages about memory loss, burning skin, tremors, and most of all, pain. What I didn't find in the folder and thought I would was the pages and pages of writing I did at the time. It would've been nice to compare where I was mentally then to where I am today. Most times it is easier to understand our current situation better when we look back on the road we traveled to get here. My memory is of a man much more anxious and troubled than I am today and yet, I'm going through a depression right now that feels just as apocalyptic as my memory says I was ten years ago. This last decade has seen some fascinating changes as well. Back in 1997 my support groups communicated by emails gathered together at websites or newsgroups. There was instant communication technology at the time, but RSD sufferers weren't yet organized enough to utilize those options. Today is a different story. Not only are there Yahoo and Google groups to chat in, YouTube has taken the transfer of information to a more effective level. Here is a great video from a CNN broadcast about a woman with RSD and the lengths we would go to find relief. One of the first things I discovered was that if you can be diagnosed early on, a nerve block had a chance to "reset" the brain from its "DANGER Will Robinson PAIN!" (sorry, I couldn't resist) mode and life could go on. At the least, needles into your spine would afford the sufferer with a break from the pain. My wonderful family did that for me and although my body didn't reset, I was in heaven for a few days without any pain. Today, a different version of nerve block is being tried. If you already went to the video link you know what comes next. COMA???!!! WOW! I didn't see that one coming. That's what I get for staying away from my education for too long. Then again, you have to go to Germany for the "treatment". Too extreme for the US to tackle. Just the same, it is good to revisit the internet and see what other sites have cropped up from my standard list found on my RSD page.
to be continued... |
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The Holidays This posting will cover both Thanksgiving and Christmas of 2007. As I mentioned in my last post, this holiday season was different from years past. rather than to parties, Thanksgiving was just an intimate meal with my brother Geoff and Christmas a get-together at a local restaurant for a very untraditional dinner with only part of the Rubio "brood".
A month later, Christmas day and another different kind of holiday meal. We were playing a calendar version of "Hot Potato" from Thanksgiving through Christmas and are currently on target to have our "traditional" family gathering in March I think (I've lost track). Like that Thursday in November, Geoff had invited me to join he, girlfriend Julie and her daughter Katherine for "dinner" in a restaurant. Interesting bit of trivia, where restaurants were all open on Thanksgiving, it was tough going to find one open on December 25th. I remembered that last Christmas Sue, Paul and I ate at the American Diner and sure enough they were open this Christmas as well. By the time Christmas came along, our small group has doubled in size and is though we missed Sue and Chris, it was a well represented Rubio gathering. Pictures and boring, bonus videos (say that 10 times) from both days are available on my Scrapbook Page. Chris and Sue included pictures from around their
homes of the snow and stuff. Living in California, I have to use my
imagination to feel the same winter wonderland. Use your imagination to
decode the message in the image below.
December 31, 2007 |
Goodbye
to yet
So,
let's start with Thanksgiving day. It was just going to be
Geoff and I, a pre-cooked holiday meal from Safeway, and football on TV.
There you have it. There was no PoCam as this was the day my hard
drive died. The meal was very good and the day was quite relaxing.
No one to take the group picture and so Geoff and I handed the camera to
each other for the record. Oh, the one of the telephone is Sister Sue sharing the
day with us! You can watch a video of Geoff carving our turkey
