Life is Sweet

I'm not sure that's the name of the song. It's one of Natalie Merchant's great songs that I hope someone plays at my memorial. Yes I think about things like that, doesn't everyone? Anyway, I'm not going anywhere soon, I have a plan. As you are aware, I am studying for my licensing exam. So easy to get distracted. I spent hours today trying to upload a photo from my phone. First I got lost trying to organize my photos on the computer. Finally I figured out how to upload the photo. I love the picture and have decided to take many more pictures. The woman with me is my partner, Colleen. We also took our baby punkin on a ride. We rode down to the park that punkin really likes. It was very nice to get out.

Another new development that I'd like to share with you is increased movement in my arms. This has allowed me to try all kinds of new tasks. I was able to hold a cup and drink the water in it.. I fed myself 75% of my lunch today. I'm trying to adapt my hand braces so that I can try to brush my teeth. I'm really excited about doing these things. My hands have been getting lots of sensation. In my mind I can see my fingers and thumbs moving.

I was so tired on Friday and Saturday that I gave myself the day off to rest. Besides studying for my test, I've been getting visits from all of the home health people. That eats up my day and my energy. However, I also got a visit from my aunt who just turned 80! It was great to see her and celebrate this milestone. We had a cake with candles and sat around telling funny stories. I learned for the first time that my mother, grandmother, and aunts and uncles lived in Compton. Actually, they lived there twice. My aunt shared that she went to 17 different schools. I always think about my grandmother and the struggles she had raising her family as a single woman in those days. I know that it was hard for her and she would be proud to see how we've all turned out.

Good news! I've begun to receive the equipment that the Department of Rehab is giving to me. This assistive technology will allow me to utilize my computer fully whether I am in bed or at my desk. I also received a book stand so that I can read a physical book. I'm working to figure out how to use a new Bluetooth earpiece which will allow me to answer my phone and probably do a lot more. I am very grateful for this help and I'm trying on to learn how to use it all so that I can make good on my employment plan.

So now I have to say goodbye so that I can get back to my studying. So long…

Look what I can do!

Today I accomplished a new action all by myself! I turned the TV off! Seems like a little thing, but to me it is huge and I'm very proud of myself.

I've been doing a lot of things by myself lately. First of all I have more muscles and sensation in my arms than ever before. So my arms have been contracted so they've looked like chicken wings. I have been able to stretch them out so they are beginning to look straighter.

The level of my injury caused my arms to have biceps but no triceps. I was unable to stretch out my arms. Recently I've regained my triceps and I'm making good use of them. I reach up and pull my microphone so I can speak into it. I've used my mouse and even clicked it. Every day all day long. I stretch my arms using my wheelchair for leverage. Every little bit increases my independence a little bit.I'll take any independence I can get even down to turning off the TV.

Good news today. On Friday I'll begin to receive the assistive technology that the Department of rehab has allowed me to get. I will be getting updated software, a bedside table monitor, a mouse that I can use, and a tool that will allow me to press keys on the keyboard. All of these items will allow me to utilize my workstation to my full capacity. I am very grateful to the Department of rehab. The DOR is an amazing resource for those who want to return to employment. They are also providing me with the study material that I need to take my licensing exam. Eventually I would like to apply to work for the DOR.

Life is good!

Ms. Wheelchair America!

Congratulations to Ms. Wheelchair America, Alette Coble-Temple! I am so grateful to know Alette. She is an amazing woman and an inspiration to many. She is most certainly an inspiration to me. The first time I met her was in a graduate school course that takes one year to complete. I admit when she first rolled in to the class. I groaned because I wasn't sure I would be able to understand her but within three minutes. I fell in love. During my studies at graduate school. I was lucky to take many courses that Alette taught and I learned a great deal from her. Even luckier, was that she agreed to chair my dissertation. Although it took me some time to complete, I had no struggles with my committee. Many my fellow classmates could not say the same. One course I took from Dr. Coble-Temple was the Psychology of Disability. While I was in the hospital not long after I was injured, I remember thinking, what an advantage. I had because of the knowledge I gained in that course. One of the concepts we talked about was how the disability community called able-bodied people , "temporarily able-bodied." This concept blew my mind because I had never thought of the possibility that some day I could actually become disabled. It was truly an aha moment for me. Lo and behold, as fate would have it, that was the concept that I needed to deal with so that when I found myself in that position, I understood that this happens to people. I am certain if I had not ever thought about what it might be like to become disabled. I would've been even more devastated than I was and my recovery time would've taken even longer just trying to wrap my brain around the fact that I had become disabled. In the weirdest way I am truly a lucky person. And I am so lucky for the people I have in my life. We couldn't ask for a better spokesperson to represent the disability community. She knows so much about disability culture and the challenges we face on a day-to-day basis. Hooray for Alette and all of the disability community!

Be careful what you wish for…

Well, I finally have a new primary care physician. Which is good, right? Little did I know that I would be getting new home healthcare. Which means that I can no longer participate in outpatient treatment. I'm pretty sad about this because I had a great physical therapist who was helping me to make progress. Not to mention I've had to meet with five new professionals who want to start it day one with me. After they meet with me, they determined that I really don't need their services. It's a waste of both of our time. They don't seem to mind too much as they are getting paid for it. I find it quite condescending when they're telling me the things that I learned a year ago. I also find it a bit difficult to pretend that I am super grateful for their help. I feel like I'm being held back a grade. So take a deep breath and keep on marching forward.

A great flick

I finally got a chance to see the movie, a Theory of Everything. It's a movie about Stephen Hawking's life. I especially appreciated the sensitivity the movie showed towards the difficulty of keeping a relationship as well as the importance of relationships. The movie showed just enough struggle to give you an inside view but not so much that it was pitiful. Stephen Hawking's life philosophy was or is that as long as there is life there is hope. I keep thinking about that and I will keep it in hand for myself.

As for myself, things have been pretty busy. I had a visit from the assistive technology guy with the Department of rehab and he assessed me for equipment that will improve by ability to work on the computer. Looks like I may get a new workstation and some training. The guy gave me some training while he was here, which will make my life easier as I'm studying for my exam.

I have a new primary care healthcare provider who does home visits and understands chronic care. I am hopeful that I will have less problems getting the care that I need. Looks like my referral to UCSF is just about complete and I'm looking forward to having this tracheostomy removed. I am hoping to be able to do some physical therapy in a pool.

A warm thank you to everyone who's been so supportive, especially to Colleen who has stuck by me throughout these traumatic events. I really want to acknowledge how difficult this has been for her. I also want to give myself a high 5 for doing everything that I've done this year. It's been a difficult year, but a lot of progress has been made and I need to remember that. As long as there is life there is hope!

Slow progress

Things are moving slow for me but I have a lot going on. When I was in school I learned a term, "crip time." Not sure if this verbiage is still in use but what it refers to is the fact that everything takes longer when you have a disability. I'm finding out that this is so true. I'm changing primary care physicians which is good however right now I messed up with the state on some of my caregiver hours, I have a pressure sore, I need medications, and it's all held up until I see my new doctor. Working with the Department of rehab and that is slow process. I have a Van now but it needs service. I'm having to stay in bed which is no fun. I used to be so active and now I find myself so bored. I think about so many other people who have a worse than I do and I wonder how they survive. I guess it's because you have to survive. You really have no choice. In any case I'm not a bad mood I am actually okay. These are just my thoughts as the days go by. Anyway I can distract myself I do.

Soldier

I remember being in a support group while I was in rehab and someone said, "When you get home you'll be fighting for your life." I didn't know what they meant at the time but I sure know now. I have a lot of things going on and it seems like everything is a fight. I've decided to change my primary care physician at the suggestion of my home health care nurse practitioner whom I trust very much. However, in the meantime I'm dealing with health issues that are unresolved and important. My last provider either mistakenly or purposely decreased the number of hours I have for in-home support services. These are the hours that my caregivers get paid to assist me. I have no use of my hands so I need someone with me at all times. Right now all I have is 18 hours per day when I did have 24 hours per day. That is a huge difference. Not sure what I'm supposed to do for the six hours that I have no care. I also am struggling with a bedsore. I don't have the appropriate dressings. So I am managing the best I can until I get my new provider which won't be until the 15th. My wounds from my fall are healing but there is a risk for infection. I have no pain medications. I still have not completed my referral to UCSF. I need to get my Van lift repaired. I'm trying to study for my exam. I'm looking for housing. Sometimes it all gets to be so much! Let's just hope the new physician will be more helpful and then I can focus on other things.