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.

There's work to do…

Today I have something to do and for that I am grateful. My colleague has asked me to assist him in a group process with his staff. This will be the first chance I've had to work since my injury and I am excited about it. Lately there have been so many good things happening and still I find myself grieving the loss of my old life. There is so much I need help with just to get through the day. I tell myself "no sniveling." Still I struggle all day long to keep it positive. I have such great role models to look to yet the reality is what it is. I'm sure I'm not alone because this is difficult for anyone. Thank you to everyone for all the love and support that gets me through the day. Thank you for the tolerance that those around me must have just to deal with my moaning and groaning. Somehow I will find a way to accept the cards that I've been dealt. My goal is to even rise above and thrive in my life despite my disability. While I'm here, I want to make the most of it.

Independence Day

It seems like just about all of my life Independence Day has had great significance. There was a time in my life, long ago, when I was hopelessly lost. I was homeless, drug addicted, and an emotional wreck. I remember more than one Fourth of July where it dawned on me how I was anything but independent. Yesterday I got to celebrate a bit of independence in that I got in my Van and went to a party. I cried tears of joy just sitting in my Van riding with my girlfriend. It reminded me of days gone by and the things that we used to do together. It was a nice feeling. I will need to get my lift worked on a bit because the swing arm did not work for me and I couldn't get out of the Van. That's okay because the Van's a really great thing. I also want to get the roof raised and if I need to possibly get a new lift. My wheelchair broke as well. So now I cannot shift my weight. Hopefully I can get the repair person to come straight away and fix the chair. I may have to spend at whole day in bed in order to get it fixed. That's a real drag for me. Anyway, just taking things one day at a time.

Great news!

I have great news! My dear friend, Alette, has donated a Van to me. It is a great Van that has a new engine, a lift, and Windows for me to see out. I hope to get the roof raised and possibly a new lift with the funds that I have raised. I am so lucky and blessed. I've only been in the Van one time and need to practice getting in and out. I have planned to go to a barbecue for Independence Day. That will be my first outing. Pictures to come soon.


I am trying to study for my licensing exam. I also received help with getting my study materials. Again I'm a very lucky and blessed woman. Studying has been a little difficult and I am full of self-doubt. I'm trying to maintain an attitude of confidence and to be diligent with the studying. I have one year to do this and it is so important to me. I just cannot see not getting licensed after all the work I've done. Also it is important so that I can do therapy in the future. Please send good energy my way so that I can get it done.