Wednesday, May 7, 2014

Orbit has been achieved!

  Another year has past, another revolution around the sun, and again I have gotten another year older. This is an event that I have no control over me, but much like MS it has control over me. I change a number on paperwork when asked my age, I imagine a few more “lines” on my face when I look in the mirror, and over the course of the next twelve months I will most likely see more gray hairs appear everywhere. What will not change however is the fact that I have MS, I am going to get worse, and there will be times where instead of feeling like the chronological age of 35 that I am I will feel closer to twice that age as this disease ravages my body. However, today I am still able to smile as I stand up and blow out the candles.
  This past year has seen many things happen both personally, professionally, and globally. Some of those happenings included me and others happened around me and I was merely there to witness them. What I am happiest about is the fact that I was there to witness them and look forward to see what this year will bring. What I do not look forward to however is seeing what MS has in store for me. Unfortunately, knowing that there is no cure, treatment is often worse and more unpredictable than the disease, and symptoms are most likely going to change without giving me a chance to understand and accept them before they set in and change the routine that I had going on. Life with MS becomes full of things that you are unable to change, but the most important thing that I advocate to anyone dealing with MS, or any chronic/terminal illness, is that your personal outlook changes the way the disease handles you and the way you handle the disease.
  As this is my birthday, I am able to see and appreciate the way that this birthday is different than
last year. First off, I am writing this at 1152pm, 8 minutes before my 10 year wedding anniversary officially begins, and I have not been to sleep since the 5th of May. I woke up on Tuesday morning like always to put my daughter on the bus, then drive my son to school, and then run errands with my wife all day before coming home and being with my family before they all drifted off to bed. Unfortunately, my Butrans transdermal pain patch had run its course and it appears that we were not able to place the new one on in time which tends to leave me with uncontrollable muscle spasms that lead to pain and soreness in all muscle groups that are affected by most of the spasms. I ended up soaking my legs in the shower twice after several failed attempts at sleep which left me a quivering mass on the bed next to my beautiful snoring wife. As I figured that I would have to put my daughter on the bus this morning like always I refused to ingest any amount of my Ambien (normally it can take 50-60mg for the effect to get me to sleep) and we didn't have any wine in the house (last resort as it seems that my incredibly high tolerance for medicine also applies to alcohol,) so instead I had no recourse but to “suffer.” Since I was unable to get into any type of comfortable position without the spasms, I ended up remaining awake until my alarm sounded at 7am and my wife got my daughter ready and on the bus to school. Then again my alarm sounded at 8am and since my son and wife were both awake, I got into the bathtub and filled it with amazingly hot water hoping that I could at least get my muscles to finally relax enough for my day to not be incredibly painful and I would not have to spend my birthday confined to my wheel chair whilst my body worked against me. As I have said before, I am stubborn as all hell, and I refuse to allow MS to win. This was also the time that I realized that I would be up for the remainder of the day.
  The rest of the day went by quite well, with a great conversation for about an hour this morning whilst I drank 2 large cups of McDonald's coffee and we sat outside in the beautiful spring weather. After that I picked up my daughter from school, then quickly went to my son's school, and then went to my wife's office to pick her up so that we could all go to my daughter's allergy doctor appointment in Charlottesville. After that we went to the auto parts store to pick up the window regulator that I ordered yesterday to finally fix the broken window on my wife's SUV, which I should add that I have never before repaired and had no clue what I would have to do in order to replace the part and get the window operational again so that we could get the State Inspection done since the sticker expired at the end of April. Then we went back to my wife's office where she went back to work, the kids collected caterpillars in a bucket (I swear there are at least 100 of the damn creepy crawly things in my house now,) and I began the repair of my wife's window. Long story short, I was able to figure out how to replace the window regulator and motor and her driver's side window is operational again which makes her a ery happy woman. Perhaps I should have repaired it as a surprise and I could have passed it off as an anniversary gift. I believe the 10th anniversary is the paper anniversary, and I could have given her the receipt for the expensive and relatiely easily replaceable part. I could honestly hear the 6 people who will read this month's blog snickering and amazed that I would sink to such a low level of romantic trickery. Well, obviously I didn't do that and will actually have to get her a good anniversary gift.

  Right now as I write this I am sitting on the couch, the wife is lying in bed reading with the occassional snore, the kids are long ago asleep and snoring, and I am attempting to relate my birthday, insomnia, and humor into something that other people might wish to read whilst I enjoy my 3rd small glass of wine (Sweet Red, Sutter Home). Unfortunately, I am still not tired. I can honestly say, at least for me, that insomnia is one of the worst symptoms that MS brings to the table. For some it is the inability to walk, balance, talk, thing coherently, numbness, tingling, and the multitude of other annoying and horrible symptoms that MS is known for. As for me personally, nothing is more annoying that listening to everyone else peacefully sleeping as I sit here in this very small town that is essentially closed for business once the sun goes down where I am unable to enjoy the benefits that sleep brings. On the good side though, it gives me ample time to work on my pacing skills, my stumbling, my controlled falling, and time to write oddly interesting blog posts like the one that you just read. Hopefully you enjoyed it, and thank you for the “Happy Birthday” wishes that you silently wished me when you realized that this post was mostly about it being my birthday. Thank you. Whilst this may not be the life that anyone wanted or imagined, it is something like it...
The window in operational order! Yay me!

My son being a zombie.

Both of my youngest children in full zombie mode.

Photo shoot I did of my kids last weekend.

Another photo I took last weekend.
A photo my son took with my camera this                                      
Another photo from last weekend.

Yet another photo I took.

The beauty of spring.

More spring beauty taken last weekend.

A small collage of fire photos I have taken this                            year.