Tuesday, January 27, 2009

I was driving!

Or at least that's what my mind believed as I lay in a deep slumber last night. I had the truly bizarre yet very positive dream, I was doing what I have wanted to deal my whole life that was an American right of passage, driving an automobile! This is something that can only exist in my dreams however since the cost of modifying a vehicle for someone with my level of immobility is astronomical, I don't have to be a millionaire can afford it or at least fairly wealthy. In my dream however this was not problem since I won a very large sum of money by simply shopping. I was at some sort of store where in order to win a large sum of money one simply had to buy a bunch of toys, how easy is that! After winning the money I found myself at a car dealership specializing in vehicles modified for the disabled, I found myself drooling over a shiny new P T Cruiser cutting convertable set up for someone like me to be able to drive. It had a lowered floor, electric ramp that folded up, the drivers seat removed so I could drive my wheelchair into it's place, and instead of a steering wheel there was a control panel with buttons to go forward turn left and right and reverse. With the money I purchased the amazing vehicle and I was on my way cruising down the road! It took me a little getting used tobut once I got the hang of it I was like Mario Andretti passing everyone on the streets and leaving them tiddly inhale my exhaust. It was one of the coolest dreams I've ever had and I felt that it was worth sharing.

Sunday, January 25, 2009

Another hospital stay :(

Yes that's right I had yet another stay in the hellish hospital. Just when I thought I was out of the woods I was sucked back in by another set of medical problems. This time one of those problems was completely unexpected. I developed something called a pneumothorax, you must be asking yourself what the heck is that well I'm going to try to explain the best I can. A pneumothorax is a hole in the lungs that allows air to escape into the area between the lung and the chest wall, these can be very serious and can lead to the collapsing of a lung. Luckily for me it was a very small one and I felt no pain, and of course my lung did not collapse praise the Lord! What they do as a treatment for this is stop all of my respiratory treatments which can be the cause of the increased pressure at causes in the lung, they also give the patient 100% oxygen for 24 hours, and in severe cases insert a chest tube to drain the escaped air. For me the 100% oxygen and a lack of respiratory treatments worked wonders and it cleared up within a few days. My other medical problem was the fact that my pneumonia that I was being treated for at-home had gotten worse since the week before. it had gotten to the point where it was causing me physical pain in my chest and causing my oxygen saturation to decrease. What they decided to do this is for me on a new type of antibiotic, through chests in a lab may determine that might pneumonia was most susceptible to this wonder drug. I am home now and doing quite well, the pain has subsided in my chest, my secretions have dried up to a point, and my pneumothorax is almost completely gone. It was a relatively short stay in the hospital but it sure didn't feel that way, due to the lack of activity you become very bored and that makes the time go by very slowly. It was not a fun time but I took in stride and try to think positively, that's all you can do in this situation is ride it out and hope for the best. My life may seem like hell to an ordinary person but when you're faced with this type of thing on a regular basis it becomes routine and relatively benign. It still gets to me once in a while because I'm human but I do my best to overcome the challenges I am faced with. thanks for reading my blog it really means a lot to me that I can reach out to others who face similar challenges and I can teach those with relatively easy lives but life with a disability is all about. It's all about surviving and thriving and getting stronger with each new challenge and not letting your disability define who you are as a person. It is very easy to make your life all about her disability and to become bitter and withdrawal from the world but it is not healthy and you will be miserable if you live that way. The key is to look on the bright side and focus on the things you can do rather than what you cannot. It also doesn't hurt to have faith in the Lord for he heals all pain. Thank you and God bless everyone!


Saturday, January 17, 2009

we want food!

Way back in August which feels like an eternity now I had my tracheotomy after choking on a bagel, causing me to develop severe pneumonia. the reason I choked was the muscles in my throat responsible for my swallowing are very weak from my disease. Back then it was determined that eating solid food was no longer an option for me. choking was too high a risk and that was a gamble I was not willing to take so I stuck to the puréed diet for the next several months. the food I was able to eat was fairly limited but I made do, I was able to eat things such as ice cream, cream or tomato soup, re fried beans, finely chopped overcooked spaghetti, and my favorite overcooked macaroni and cheese. Overcooking those last two dishes was to make them soft and easy to purée. It wasn't fun not being able to eat a juicy burger or a T-bone steak but at least I could enjoy some food.That was until December 20th when I was hospitalized for my second bout of pneumonia. The doctors determined that the cause for my pneumonia was aspiration caused by eating and drinking so they decided I should not eat anything at all which was a huge disappointment for me. I was denied one of the greatest pleasures in my life and I was devastated. Now I live food free and it's one of the hardest things I've ever had to do, almost every night I dream about food and in the day I'm tormented by a food imagery in the media. It seems like every time I turn on the TV I am haunted by images of mouthwatering entrées. This is by far the hardest thing I've had to give up besides giving up walking. I never realized how much food was a part of my life until I was denied, now I see what a big part of my life it really was and how much it meant to me. In case you're wondering how I survived without food I get all of my nutrition in liquid form for a feeding tube that goes directly into my stomach. I guess five cans of liquid nutrition a day and that's what keeps me alive. I have been thinking of taking the risk and eating puréed food again but then again I might end up in the hospital once again with pneumonia which is something I'll do anything to avoid.

Snow day

Yesterday's impromptu trip up to the mountains to see snow was a big success! The reason I say impromptu is there was with hardly any planning, we just decided to go on a whim. Sometimes it's nice to do things on the spur of the moment and let caution fly to the wind and that's exactly what we did. After a pleasant and relaxing 70 mile drive we arrived at soda Springs ski resort where we stopped at a lodge overlooking a frozen lake, the sheer beauty was unbelievable I felt like I was in a postcard! We let Lynelle run and play to her hearts content in the frozen landscape. I've never seen Lynelle so excited in my life as when she saw the snow, she proceeded to frolic and prance around like a puppy. After a while of playing solo a young woman who lives in the area brought her eight-month-old puppy and we let them play. They chase each other for what seemed like forever eventually they got out of sight and my panic stricken mom and young woman had to chase them down. I can't believe how much energy Lynelle had that day and how much she loves snow. Once the sun started to go down we went to a rustic restaurant bar where we enjoyed a hearty meal before we headed back down the hill in calm darkness. the only negative was the trip was Lynelle injured her paths on the hardpacked sharp ice like snow. It hasn't snowed up there for a couple weeks in the snow hardened. Her pads are red and sore from the rough surface and I feel terrible the poor baby! dogs heal quickly so I'm not too worried she'll be back to her old self very shortly. All in all it was a very nice trip and I can't wait to do it again only next time it will be after a snowstorm when the snow is nice and soft and fresh.

Friday, January 16, 2009

head for the hills!

That's exactly what I'm doing today in about 15 minutes. I'm packing my equipmentthen heading up to the breathtaking Sierra Mountains to see the snow. You see in Sacramento Snow is a very rare sight so it's worth the Long drive to see the white stuff. It's been a couple years since I have seen the snow so this will be a rare treat! I will try to find a place to let Lynelle run in the snow. Stay tuned to see how this little adventure turns out.

Tuesday, January 13, 2009

a beautiful day in the neighborhood

Today was truly a beautiful sunny California today without a cloud in the sky. Temps were in the mid- 60s, children were playing, birds were singing, and dogs were barking... It seems that everyone was enjoying this day the same as me. Having just left the hospital this was truly uplifting and made it feel wonderful to be alive! My mom and I, mom on bike me in chair took my gorgeous girl Lynelle for a long-run around the neighborhood. We stopped in the middle to feed a stunning champagne colored horse carrots, the steed thoroughly enjoyed it and gave my mom some affection. What a day! Now I'm going to watch a movie with my family then relax in my bed to watch a little TV, the perfect end to this wonderful day.

Monday, January 12, 2009

where have I been?

In case you're wondering where I've been for the past three days I was in the hospital for the second time in the last month with pneumonia. don't worry I'll be fine this is a very common thing for someone with Duchenne's. Due to our very weak muscles in our chests we are unable to adequately cough up stuff in our lungs and things settle her along and we get sick. Lucky for me it was caught rarely and with antibiotics I'm back on my feet so to speak. It certainly wasn't fun but have nothing to do but move on with my life and hope and pray my health holds out. The reason I got pneumonia twice in one month is my antibiotics were stopped too early and the pneumoniae came back. Back in August I choked on a bagel and ended up getting severe pneumonia that almost took my life, that is when I was trait to help my severely weakened lungs fill with air once again. I was in the hospital for two months then it took everything I had to get through it. Hospitals are a part of life for someone with Duchenne and we just have to live with it. like they say, what doesn't kill you makes you stronger and I definitely feel that it's true. Those two months in the hospital changed me forever, before I was an angry, negative, and downright mean person but now I am filled with compassion and I look on the positive side. Coming near death will do that to you! In a way I am thankful for those two months I am much happier with myself and life in general, it's a miracle how I've changed!

Thursday, January 8, 2009

Marley and Me.

today I saw the most amazing dog movie I have never seen. It made me laugh, made me cry, and gave me a deeper appreciation for my loyal companion. I recommend anyone that has the slightest interest in dogs could see it if you can handle the sad and believe me it is sad but that's part of life, it can be all smiles and sunshine all the time after all. I can't wait to read the book!

Wednesday, January 7, 2009

A busy day!

Today I had a preop appointment since I'm going under the knife on January 6 for a small procedure. Today they read me the risks which were minimal, made me fill out a ridiculously long survey on the health, and walked me through the procedure. The procedure is the removal of scar tissue around my stoma, a stoma is a small hole in my trachea in which a tracheostomy tube is inserted onto which my ventilator is connected. The procedure involves using a scalpel and acauterization tool to remove the excess tissue which makes changing my trach tube very difficult. Trach tubes are usually are changed every two weeks to avoid it being permanently embedded in my throat and to avoid infection from a dirty trach tube. They will put me under light anesthesia for the procedure which will take about an hour and a half or so. There is very little risk this surgery and I will only be in the hospital overnight.

Another thing I did today was pick up my new cushion from my local wheelchair shop. The old cushion I have was causing me severe pain on my buttocks so I had to go. I opted for a Roho cushion which is a cushion made up of dozens of small compartments that are filled with air and can be adjusted to fit anyone. I'll be sitting on error when I try it out tomorrow. Hopefully this will end the pain in my butt.

Well that's it for today thanks for reading.

Tuesday, January 6, 2009

How I feel about Lynelle

In no way shape or form is Lynelle just a dog! Click the picture for a larger view.

Monday, January 5, 2009


My beautiful canine friend Lynellemay look like your typical yellow Labrador but she is anything but typical. She can't fly, she can't leap tall buildings at single bound, she doesn't wear tight fitting spandex, and bullets will not bounce off her but she is a super dog. She is what is known as a canine companion or service dog, a canine companion is a dog that helps disabled people be more independent in their daily life. She is very specially trained in over 40 commands, she can open doors, open drawers, pick up items that I drop and deliver them to my lack, get a cold drink out of the refrigerator if I choose to train her to do so, bark on command and much much more. Try to get your dog to do that! I got Lynelle completely free of charge from a nonprofit organization known as Canine Companions for independent or CCI, there they trained her in all that she knows. I had to go to their facilityin Santa Rosa California for a two-week training coursethat taught me how to handle Lynelle and all her commands. I had Lynelle since May of 2008 but it feels like a lifetime, it's hard for me to remember life without my trustworthyand loving friend. Words cannot express how much she has changed my life. She has given me Independence and I can only dream of before and she is the best friend anyone could ask for. I love her as far my family and I am forever grateful to her for her loving service. I recommend anyone with a physical disabilityto get a canine companion, it's a lot of work he worked in the end. For more information go to www.cci.org

Sunday, January 4, 2009

welcome to my blog!

This is my first post and first blog so bear with me, I'm not sure how all this stuff works but I'm figuring it out. I am going to use this post to tell you a little bit about the things I love in life.

The number one thing in my life is my family and that will never change. They are a wonderful support system for me and I don't know how I could live my life without them. I live at home with my younger brother Brett (19), my amazing mother Heidi (50), and my beautiful canine companion Lynelle. a close second are my friends many of whom share the same disease I do, they always offer me great advice and help me see the positive side of life and disability. another huge thing in my life is m amazing Lord and Savior Jesus Christ, without him nothing else would matter. He is my pillar of strength and is what has kept me going all these years. Life isn't worth living without God! lastly I love the amazing technology that makes my life bearable mainly my power wheelchair that gives me mobility and independence. I am so glad I was born in the 20th century! My second favorite piece of equipment is my ventilator that is small and portable enough to take with me on the back of my wheelchair. not too long ago people on ventilators were bedridden for life. thanks to technology I'm up and running or rolling in this case.