Waking Sleep Blues

I know, I know.  I keep promising blog posts and never deliver and I’m doing it again.  But winter is hard, November is hard, and I just get very overwhelmed.

November has unconsciously become a difficult month for me.  In November of ‘05 I had to medically withdrawal from college to have heart surgery, and lost a lot of friends.  In November of…’06 or ‘07, I’m unsure (the years sort of blend together for me now) I had to have my gallbladder removed.  Though it seems many months are becoming difficult.  For almost 3 years now, February has been a difficult month , following my cousin’s death. 

And now, I feel the dread of April.  Almost like when April gets here the earth will open up and swallow me whole.  Lost a so called friend and almost lost my father to a reckless driver all in the same week.  Though I was happy to lose a selfish so called friend, so that our family could focus on recovering and helping my father through a difficult recovery. Speaking of which, it looks like he will need yet another surgery, this one to repair damage to his shoulder.  And we also found out that he broke his femur in the accident, though it isn’t very surprising considering the extent of damage he endured.  Mom talked to one of the people who witnessed the accident, it seems the accident had a strong impact on everyone who saw it.  She told us that a group was formed not long after dad’s accident to increase people’s awareness on sharing the road with motorcycles. There have been several other severe motorcycle accidents in the area over the years, caused by automobile drivers failing to yield right-of-way and acknowledge motorcycles.  It was hard to hear the details of the accident from a third person perspective.  It was that heart numbing shock I felt when the police came to tell me what happened, I still have a hard time dealing with the events of that day.  I think the next April 21st will be a hard day for all three of us.

The month is going badly, the pain and fatigue of winter are hitting me hard.  And even when my pain seems low, thanks to my medications, it’s an odd sensation like my body still feels the pain but my brain doesn’t acknowledge all of it.  Some days I sleep most of the day and night.  Others I can’t sleep.  Still more where pain and dislocations make it impossible for me to be semi-comfortable and sleep soundly for more than a few minutes.  I’ve been cleaning and setting stuff aside for donation to distract myself a little.  Even though it makes everything physically worse, it eases the anxiety in my mind a little and distracts me some when the pain and depression are at their worst.  Last night I was up going through my books to give to charity until 4 am and it took longer still to go to sleep.  I’ll be happy for the month to be over.  Hopefully I’ll be able to enjoy the holidays as thoroughly as possible. And most of all, hopefully 2010 will be a great deal better for my family than 2009 was.   I hope everyone has a happy holidays.

Be Happy

Finally back from my doctor appointment. Poor mom, she had to drive the hour an a half (one way) up and back twice today. Dad and I both had appointments with different doctors but when they got there they found out that dad's doctor was "fogged in" after flying his private plane to Florida and all his appointments were canceled! But my appointment went well, except for these chatty ladies in the waiting room, mom signed me in and I rolled in (there is a space at the end of a row of chairs in the middle of the room that is the only good spot to park a wheelchair) so I go to my usual spot (other side of the small waiting room) and one of them whipped her head around and went "Can I HELP YOU!?" In a really 'I'm disgusted by your presence' kind of way.  I went into deer in headlights mode and went "nooo...." then my mom walked in and she just sort of rolled her eyes and went "I didn't mean to be rude!" But still in a really snotty attitude.  I still don't know what her problem was.  They spent the entire time talking about smoking, drinking, and gambling.  They might as well have started on how they crush a Vicodin and snort it.

Mrs. M (my pain management PA) and I were talking about depression and how when someone has chronic illness, the depression is slow and people have time to accept their illness more.  But when it's chronic illness in a young person it's about as traumatic as someone (like my dad) who was in a bad accident and is suddenly disabled.  And the depression is exacerbated because we tend to think of the future in terms of "If I'm like this now, how much worse is it going to be when I get older? Or even WILL I get older?" I thought that was interesting cause I think most sick and disabled young people, like myself, can agree it is often like that.  I don't think a day goes by that I wonder if I'll live to see 30, or even 25.  I spent so much time wasting away thinking of it, and now I think of it in the way that life should be lived truthfully and taking joy in what little pleasures you can.  I had a lot of dreams for myself, and none of them included being bedbound most of the time, living with my parents, never getting the option to travel like I want, and never having a family (you know spouse and kids) of my own.  But I still enjoy what I can.  Even if it's video games, a movie, a hug, watching my cat sleep.  I may not be able to do the big things in life, but I can be happy.  I can find something to be happy about.

My Sickface

This is an extremely rare picture of me and my sickface (how I refer to my face since being bed bound, around the time people started looking at me with their "how sad" faces) now. I haven't posted a new picture of myself since I've been completely bed/wheelchair bound and especcially not any of me how I look day to day. I'm trying to get more comfortable with me and my sickface, sadly this is my sickface on a half decent day. Maybe one day I'll manage one during my hardest moments

Vacation ‘09

Our vacation to Tennessee went surprisingly well for the most part.  We stayed in a nice condo in Pigeon Forge and we traveled between Pigeon Forge, Gatlinburg, and Sevierville.  We visited some great shops and restaurants, I’ll tell you about some of my favorites and there wheelchair accessibility.

The trip to Tennessee was less than easy.  After loading into the van, we discovered the battery was dead.  Luckily we were able to jump start the battery and the lovely auto shop men at Sears ran some diagnostics and gave us the ok to continue our trip.  So we stopped at iHOP, set up my portable DVD player, and got on the highway.  Sometime during my Mad Men marathon I started to get car sick, which lasted for about 4 hours of the 6 hour trip.  But in my misery I decided to take my first picture of the trip!  I ended up taking over 500 pictures, but only a few will be in this blog and some more can be found on my Facebook page.

  

 

Eventually we got to the condo.  I got the biggest room because I needed the extra room to maneuver around in my wheelchair, my room also had the smallest bathroom which was important since my wheelchair couldn’t get into any of the bathrooms so I needed a small one that I didn’t have to walk in, just transfer.  The condo was beautiful and had a nice view.

While we were there mom and dad also had their vows renewed for their 25th anniversary.  It was a beautiful and touching ceremony.  It was definitely one of the big highlights of the trip.

The area is full of interesting buildings, shows, and stores.  One building I wanted to get a picture of was an upside-down building (I think it was a laser tag/arcade type place) but I could never get a good picture of it.  The Ripley’s Aquarium in Gatlinburg is an amazing place.  The entire place is wheelchair accessible, but the inevitable crowds can make it difficult particularly in the gift shop.  But it was a great experience and the difficulty navigating the crowds in a wheelchair was nothing compared to the fun I had.  Not too mention the beautiful creatures you get to see (I fell in love with the cuttlefish!)

  

Gatlinburg also has a great arts and craft community with many talented artisans and I had the great pleasure of meeting some of them.  Two in particular I’d like to mention. 

Deb from Deb’s Soy Candles and More in the craft community of Gatlinburg.  She is very kind and even though her store isn’t that big she makes sure that both her handicapped and non-handicapped customers find what they need and are happy with the product.  Her candles are the best I’ve ever seen, they are beautiful, fragrant, come in a wide range of scents, are all natural, long lasting, and well priced.  Mom and I have used her candles for years and keep coming back for more.  You can just take the lid off of the candle and not even light it and you’ll experience her candles wonderful and unique scents.  http://www.debssoycandlesandmore.com/

Another artisan I had the pleasure of meeting was Jack Hess at his store/studio The Glass Blowers Studio in the craft community of Gatlinburg.  His shop is jus big enough to get a wheelchair through (a lot of the shops in Gatlinburg are small but can be maneuvered in a wheelchair if you’re careful).  Not only do you get to see his gorgeous finished pieces, but you also get to watch him work!  He’s very friendly and does custom orders too.  http://www.gatlinburgcrafts.com/glass_blower.html

There are many other great artisans and shops in the area.  Including the popular Alewine Pottery, beautiful and functional pottery at good prices. http://www.alewinepottery.net/

Of course the area is full of shows to.  Dixie Stampede is a nice show with good food, and is wheelchair accessible, but can be difficult to get around in the large crowds and it can be hard to get into the spirit of it when you can’t stomp your feet, beat the table, or yell out but it is still a fun time.   Magic Beyond Belief is another good show.  It’s wheelchair accessible but, the seats tend to have the lights shine in your face from time to time.  It has a lot of comedy to it as well as magic and is a lot of fun.

The one restaurant that really impressed me though, is the Old Mill Restaurant in Pigeon Forge.  The two story building can be intimidating for handicapped people, but it features a ramp (probably wouldn’t want to use a manual wheelchair on it though) and an elevator.  When you enter you are greeted by an extremely kind and funny staff who happily help handicapped customers.  There is even a small elevator inside the restaurant to get wheelchair bound customers down a small flight of stairs.  They serve a great breakfast, I definitely recommend giving them a visit.  http://www.oldmillsquare.com/restaurant.htm

Even though I had a hard time because it was hard to sit for so long and was difficult on my hips and back, it was a great experience.

Hibernation

I've was hoping to get a good long blog or two out when I got home from vacation, but as luck would have it my body decided that winter is close enough an to start it's "hibernation" process. A lot of people with chronic illness, particularly illness that affects the joints, find winter to be difficult. I would much rather this be during the summer, since I can't tolerate heat and enjoy the winter holidays. But anyways, when I say hibernation I mean the months between the start of fall and the start of spring, when my pain level tends to increase, I get fatigued more, and I just all around feel worse than usual. So my blogs may be shorter and/or less frequent. But I do plan to get a couple blogs out soon. Just be patient with me, cause I just haven't well at all lately.