Getting out in the world…

We made a trip to Walnut Creek to look at some possible housing options. May as well stop at Sam's Club to have a hot dog while we are nearby. As we are waiting in line, a woman approaches us and she seems excited. She asked us if we would mind talking with her as she has a sister who had recently become quadriplegic. She was excited to see us out in the world. She was curious about how we had gotten out and why we seemed so happy. We were glad to speak with her. She told us that it would be great if we could meet and/or talk with her sister. Perhaps it might create some hope for the future. We did call and spoke with the sister as well as the mom. It was such a blessing for us to get out of ourselves and remember that things have improved so much during the year. We hope to make a visit real soon and to keep in mind how much things have changed in the last year and a half. A friend called me recently and reminded me that when you let someone help you, you are actually giving them something. This was absolutely the case when this woman approached us. She gave us a very powerful gift by helping us to remember that we are not alone and that we are all connected.

I will remember to reach out to others and to accept the blessings that have been given to me so abundantly.

My gratitude…

Happy Thanksgiving to you and yours…

My heart is overflowing with love and gratitude today and I will strive to be mindful of the many and beautiful blessings that I am surrounded by.

• First of all, I am grateful to God
• my partner, Colleen, who has taught me how to love, I am so very grateful…
• Everyone around me, the team, that helps me to be alive every day
• to all my beautiful family, that amaze me with their love and support
• to the many who have taught me so much, along the way
• for my van
• for the feast and the friends we shared today with
• for the housing and my colleagues who have helped me
• for the friends who cannot bring themselves to see me, yet
• Santa Clara Valley Medical Center 
• for music
• for the Department of Rehabilitation
• for JFKU
• for. Ms. Wheelchair USA
• for the earth, the universe
• for ladybugs
• for the ocean
• for my memories
• for the future
• Punkin

Your heart was made to love and be grateful…

2015

Standing Up

I used to teach at Diablo Valley College. When I was injured and in the hospital, it did not occur to me that I had upcoming class until a few days before the class was scheduled to begin. I finally "woke up" and realized that I needed to call my supervisor and let her know what had happened. I assured her that I would be able to return to work the next summer. About six months before my class was to begin, I contacted my supervisor to set up a meeting to discuss what accommodations I might need. She told me, "we gave your class away." I was totally devastated because I love teaching, I am a good teacher, and this was a link to my future that gave me some will to keep fighting. Since then, I have learned some about the Americans with Disabilities Act. I found that I qualified to file a charge with the Equal Employment Opportunities Commission. I chose to do this because it really hurt me to lose that position and I wanted to know whether my feelings of being wronged were valid. I have volunteered to attend mediation regarding this issue and I'm waiting to hear if the college is willing to attend mediation. I contacted the Employment Law Center in San Francisco and was referred to a disability employment workshop in Berkeley where I would be able to meet with a lawyer to discuss the case. The Employment Law Center were very supportive of me and the issue that I have raised. It is my hope that I will be able to get the job back because I can do it with a reasonable accommodation. I will keep you all posted and in the loop. I know that I am not the only one that has experienced this sort of thing. I encourage everyone to stand up for themselves as the worst thing that can happen is that I will learn more about my rights. It may just be possible, that the employer will also learn how to be more culturally competent. Last but not least, I hope to be a good role model for students with a disability. I want to send a message that you can achieve your dreams and do what you want with or without a disability. So, I will keep you in the loop about what goes on and what I learn. Send good energy and good juju. Thank you for all the love and support.

Review

I've been thinking today and looking over all the progress we've made in the last year. In the hospital. I think we were just in shock and sort of in a fantasy land. I guess this is probably a defense mechanism protecting us from dealing with the reality of our situation. I was unconscious for 10 days. The next 20 days were spent fighting off the demons that morphine brings. The second 30 days we were moved to Santa Clara Valley Medical Center, which was like spinal cord injury heaven. Things were so easy when we were there, the staff was so positive, and I believe it was by design that stress was kept to a minimum so that we could learn what we needed to learn. The days were packed with learning how to care for me and how to direct my care. We were definitely on a pink cloud when we discharged. Chaos reigned as soon as we got home. We had medications and supplies strewn all over our house. People were coming and going and offering to help, but we were either too proud or too in denial to accept. My partner tried to do everything which lasted about three weeks. Then it all fell apart. The next six months were quite hectic. Colleen moved out and I grabbed on to anyone that I thought could help me. I had never felt so vulnerable in all my life. I pretty much let people run rampant through the house because I felt powerless. Colleen was so angry with me and so hurt. I didn't believe that we could make it with my disability. Things were really awful. I cried just about every day. At some point I was able to take her perspective and understand how things had gotten so out of hand. Thankfully I was able to get Colleen to come back. Slowly but surely we got our house back to somewhat what it used to be like and we had to change caregivers. We changed a lot of things. Now it is almost like it used to be pre-injury. When I look back at all the changes we went through I realize that it was par for the course. We didn't know how to cope with the change in our lives. We could hardly look at one another because it was so painful. Questions of "what if?" and "why me?" plagued us. To be honest, they still do, but today, looking back, I am proud of how strong we've been and the progress we've made. I will have to keep this in perspective as I face the future because it will certainly be even more manageable as time goes by. I guess this is a universal truth when dealing with struggles. Somehow we get through it. Over time things get better.

Looking Towards Autumn

One thing you might not know about quadriplegics is that they lose their ability to automatically regulate heat and cold. Most people shiver when they're called or sweat when they're hot which helps them to regulate their body temperature. When I sweat it usually means that there is something wrong. I have to watch out for a thing called autonomic dysreflexia. My body has a backup system (all bodies. I suppose) that allows me to know when something is bothering my body, a.k.a. noxious stimulus. What this means is that if I have an ingrown toenail that is bothering me. I don't feel it, but sooner or later if it bothers me enough my blood pressure will start to go up and I may begin to sweat. This is my warning signal and once I am aware I need to take action. I will begin by taking my blood pressure every two minutes to see if it's rising. Then I have to find the noxious stimulus or the source of my pain. If I cannot find it, and my blood pressure continues to rise. I may need to call 911 or risk a possible stroke. So we have a checklist to review about possible causes of autonomic dysreflexia. We also have a handout to hand to the EMT technicians and/or emergency room physicians so that they know what action to take. I have to be able to help them understand because my experience shows me that they're not usually looking to read anything in these moments. So, we ran through the checklist and usually we find the source or the noxious stimuli. I have to be very careful about being in the heat or cold because it can trigger autonomic dysreflexia. All this to say it is too hot for me today and I look forward to autumn.

Angels

Some time ago, I was taking the city bus home from the movies when I had a nice experience. Bus made a stop and an older woman got onto the bus. As she was passing by me, she asked me if it would be all right for her to touch me. I told her I didn't mind and she put her hand on my shoulder before she continued on to find a seat. She sat behind my caregiver. She asked my caregiver if she thought I would mind if she asked me a question. My caregivers told her that she didn't think so and to just ask me.
She told me that she was somewhat psychic and that she just wanted to let me know that I had angels all around me. I told her that I knew that they were there.

It was a lovely experience because I always wanted someone to tell me that. I have experienced a lot of loss in my life and whenever I would see mediums telling people messages from their departed loved ones, I would feel neglected in that I never heard from mine.

There are plenty of angels surround me in real life or in my day to day life. I have my partner, Colleen , who helps to keep me cheerful most of the time. I have family members that come to see me on a regular basis. And I usually have a house full of caregivers helping me on a day-to-day basis. If ever I felt alone in my life, I certainly do not feel alone now. Thank God for that. Recently I had home healthcare workers visiting me due to a pressure sore (which has healed now) and they told me stories about most the people they see. They confirmed how lucky I am to be cared for so well.

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.

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.

Santa Clara Valley Medical Center

Brian Stow, the Giants fan who was assaulted at a game with the Dodgers, did his rehab at Santa Clara Valley medical Center. He recently went back to visit on crutches which is miraculous. He wanted to thank the caregivers who helped him when he first was injured. I also did my rehab at Santa Clara Valley medical Center. It was the best hospital and care I could have ever hoped for. I'm very grateful for all that they taught us about living with my disability. I was only there for 30 days and thankfully I received most the tools I needed to get around in my life. The curriculum basically taught me what kind of care I needed from head to toe. I'm also very grateful to Colleen who stood by my side and learned all the necessary procedures for living. I especially want to shout out to Dr. Crew as he was a terrific doctor. He actually has spoken to me by phone several times since I've been home. It is amazing the contrast between the care I received there and the care I get today. Not sure what to make of that except that they strive for excellence.

An article

The New York Times had a great article on bipolar disorder. Check it out by clicking the link below.

http://www.nytimes.com/2015/06/28/magazine/i-dont-believe-in-god-but-i-believe-in-lithium.html

Rough day

Yesterday turned out to be a rough day. Actually things were going well until the early evening. My partner, Colleen, pulled up in her Jeep which she just got out of the shop. I was excited to see what had been done to the car. I began rolling down my ramp, forgetting that I didn't have my top seatbelt on. I tilted forward out of my chair and toppled onto the ground with the chair on top of me. It was very scary. We called 911 and they took me in to the hospital to be checked out. I had x-rays and a CT scan. No broken bones, no concussion, just a goose egg on my forehead and a raspberry on my elbow. Big lesson, no rushing around for me anymore. I guess I'm quite blessed that I didn't kill myself.

Celebrating equality

Today is a day to celebrate! The Supreme Court decided that the LGBT community will share the same rights to marriage as everyone else. Equal rights are good thing for everyone. I am proud to be an American.

I also have a great big wonderful announcement to make but not just yet. Keep watching for good news on my blog.

I have so much to be grateful for, most of all for the love and support of friends and family. I am also especially grateful for strong role models. Some days I feel I just can't do it but then I think about others that I know that doing it and doing it well. This gives me the strength to go on. There is so much to do and it seems like so much is a struggle. When I look at other people like they are superheroes and I'm just a regular person. Still I must go on and so thank God for all the people have shown me that life is still possible. Humans are amazing!

An amazing woman

I received a message from the Dean of my alma mater today. It follows below:

Dr. Alette Coble-Temple has been named the Harry L. Morrison Oustanding Faculty of the Year!  Dr. Coble-Temple is a graduate of JFK University’s Sport Psychology and PsyD programs. She began her teaching career at JFK University in 2002 and attained the faculty rank of Full Professor in 2014. During this time her contributions to the University, College of Graduate and Professional Studies, and the PsyD program have been invaluable.  Dr. Coble-Temple is the Chair of the PsyD program’s Curriculum Committee (no easy task as the doctoral program is accredited by the American Psychological Association - APA).  In addition, she serves as the Faculty Liaison to the PsyD Student Council.  Most admirable, however, is her primary focus on the education and training of our PsyD students. 

Dr. Coble-Temple was inducted into APA’s prestigious 2014 – 2015 Leadership Institute for Women in Psychology.  Dr. Coble-Temple also serves on APA’s Committee on Women in Psychology (CWP), arguably one of the Association’s hardest working committees.  She is a national presence in advocacy for persons with disabilities.  Recently, her visibility and impact in this regard have been greatly increased with her having won the Ms. California Wheelchair 2015 competition, a social justice organization. 

All of the above accomplishments serve the important function of modeling for our students a commitment to lifelong learning and how a psychologist can make a tremendous impact inside – and outside of – the University. As you might imagine, given her prolific scholarship, exceptional student mentorship, and public advocacy, Dr. Coble-Temple is an incredible asset to John F. Kennedy University. Please join me in congratulating Dr. Coble-Temple, JFK University’s 2015 Harry L. Morrison Outstanding Faculty of the Year!!!

I very much admire Alette. She is amazing!

Blog quirks

There are a lot of things I'd like to fix with my blog. First of all, I'd like it to be accessible to everyone. I like the background I've chosen however, it seems difficult to read at times. I'd like to fix that but it's very difficult for me. Still I'm trying. Some people are unable to make comments because you have to belong to certain Google accounts. I intended for music to play when the page opens. There is just a lot of things that I am frustrated by with the computer. I have to let go of my perfectionistic ways. Really, I should be grateful that I'm able to even use a computer.I am. Today I'll begin studying for my licensing exam. I wish I was more confident. Please send good juju. I guess my task today is to see the glass half full.

A comment

The following is a comment from a reader:I have a daughter who is what we call a para-quad, long story that I can tell you later, and a boyfriend who is a quad.  My daughter was diagnosed with Cancer at 6 months old and has never walked, I  have been her primary care giver while she's gone through multiple infections, procedures, and surgeries.  She is very independent now, but I'm still available to meet any needs that come up.  My boyfriend was hit by a car while on a bicycle 10 years ago.  He is experiencing chronic pain as well, quite a process I tell you.  He has MediCal and was seen through the county. Although his doctor had good intentions, the process is broken and extremely frustrating. A lot of doctors don't want to deal with MediCal and my experience has been that they tend to keep referring you to someone else and not accomplishing anything, and the follow-up takes forever. We have since moved his coverage to a hospital that has doctors who specialize in disabilities and/or spinal cord injuries.  The process is never quick enough, but so much better.  At the very minimum, they talk to each other and seem determined to help.  He is also being seen at UCSF, due to a referral for pain management. He talks about quality of life often and completely understand. My heart goes out to you and hope you find relief very soon.

Update

My apologies for my absence from the blog. I was ill for a few days and then having computer trouble. Just wanted to update people on how things have been going. A few days ago, I had a MRI. This is in preparation for having my trach removed. The plan is to be seen at UCSF for an evaluation before having it removed. I'm looking forward to this next phase of my recovery. I also received very good news today. My request for accommodation has been approved by the Board of psychology. This means I have one year to finish my licensing exam. I'm really excited about this new development! More to come…

Stuck on Sunday

In Vallejo buses do not run on Sunday. I think about all the people that rely on public transportation and I wonder why there are no buses. Myself, I'm working on getting a Van. Family and friends have started a go fund me campaign, I've raised some money, and I'm writing a grant. I fantasize about having a Van and going around giving people a ride since I'm sure so many are just stuck at home. Basically I'm just tired of being stuck in the house.

Going Muzak

I propose we change the old saying "going postal" to "going Muzak!" I spend a lot of my time making phone calls to doctors or doctors offices and I am subjected to quite a bit of terrible Muzak. I'm usually not in the best mood when I'm waiting on hold to find out about a referral that I've been working on for six months.The other day I found myself listening to about six rounds of the most horrific Muzak that I've ever heard. Finally, I opted out and left a message. I made sure I let them know that they should please change their music before someone hurts themselves. Having a sense of humor sure does help!

A resolution…

Finally, I have some kind of a resolution. I saw a new doctor today in Fairfield. Evidently I had to see this doctor because she is a MD. I may have said before that the last Dr. that was seeing me, had left the county. The clinic I was going to only had nurse practitioners available. So when my new doctor entered the room today, she had a very negative attitude. We went back and forth over my medication. She asked many questions which I believe led her to the conclusion that I am not med-seeking. We have decided to try a new medication. One that I had asked for previously. I was told that my insurance wouldn't likely cover it. Turns out this doctor will have to do a treatment authorization request more commonly known as a TAR. These requests take a lot of time to write out so that may be the reason no one wanted to do it.Medical doctors have a difficult job. Mostly their actions are guided by policies that are set by institutions and governments. Still, the bottom line is all patients should be given the benefit of a doubt, respect, and compassion. After all, we are talking about quality of life.

Please make comments

I'm happy to report that I'm getting a lot of page views. However, I've not received any comments. Please, if you read my posts, and you can relate to what I'm talking about, make a comment. The purpose of this blog is to share my experience of being newly disabled. Maybe you are reading and you don't have a disability, but you can relate either through your own experience or someone you know who does have a disability. Sharing your thoughts about some of my challenges and victories can help build community between those who have disabilities and those who are able-bodied. I'm hoping that my blog can build unity in this way. I'm also hoping that other people with disabilities will be able to feel more connected by reading my blog. I'm not looking for personal comments, although I know many of my readers are my personal supporters. I am grateful for their love and attention, and I'm hoping to have a broader impact through this blog. This blog is helping me to create some meaning and purpose in my life. It gives me a reason to get up and get busy every day. I also welcome comments that are constructive or help me to understand the culture of disability as this is all new to me. Most of all, thank you for all the support.

The ongoing saga

So this subject is already starting to be boring. However, I have to keep writing about it because I know this is an issue for lots of people. I have home health nurse practitioner who comes to see me once per month. These home health practitioners have been awesome. They feel that my doctors denying my pain medication is patient neglect and unethical. I agree. Still, it was helpful for them to validate what I've been feeling. They told me that it's not my fault. I was beginning to feel like I have a problem just due to the way the doctors were treating me. Come to find out that there's an issue between the home health agency and the county clinic in terms of policy. The county clinic has globally decided to be very sparse in addressing pain across the board, no matter what your situation. The home health agency is not ready to fill in the gap, nor should they. What this means to the patient is that quality of life is reduced. I'm trying to get ready to take a licensing exam and I need to be on my toes, so to speak. It's hard to do that when you're in pain. Not to mention the toll that it takes on my mood. Sleep is also impacted. This clinic is not only been negligent in addressing my pain, but also keeping my medication for spasms, up-to-date and refillable. In spite of my contribution of bringing a list of medicines that I needed to have refilled. I think I probably need a lawyer rather than a doctor.

The dilemma continues…

I hate to go on and on, but today I had another appointment with my primary care physician. Actually it was a substitute PCP. My PCP has moved on and they cannot tell me who will be his replacement. Before he left, he reduced my medication by 60%. He only left me with one month's worth of medication and no plan for what I would do afterwards. The substitute refused to help me. So now I have to meet a new medical doctor in a week and have to suffer in the meanwhile. I take a medical Van to my appointments and I have to have a form signed for it to be covered by my insurance. On the form they asked for a diagnosis. So now my Van driver gets to have the information of why I was at the doctor, which is kind of embarrassing. Whatever happened to patient confidentiality? If you have ever experienced nerve pain, I'm sure you would understand my angst. Of course right now my feet feel like there's sitting in a vat of chemical acid. Somehow I will keep my chin up and march on. I understand that yesterday there was a day of action in Sacramento, advocating for disability policies. I wish I had been there because there's certainly a lot of policies that need to be changed. Maybe next time…

The dilemma of pain

I am in pain, most of the time. It is ironic that I cannot feel except for this pain. It's mostly nerve pain, but also body pain. It affects my mood and it makes life difficult for everyone around me. It's hard to stay positive, when you're in chronic pain. The problem is that my healthcare providers have taken the perspective that I don't need pain meds. When I came home from the hospital I was on a pain med regimen that called for one pill every four hours. My first primary care physician, reduced that to one pill every six hours. Of course, then I was assigned to a new primary care physician. The new physician, reduced my pain meds to one pill every eight hours. The last time I had an office visit my pain meds were reduced to one per day. Because I've been vocal about wanting my pain treated. I imagine I am being labeled as "med seeking." It is a vicious cycle. You have to advocate for yourself, but if you advocate for yourself, it may backfire in your face. I imagine it doesn't help that I'm on Medi-Cal. I make no apologies for being on Medi-Cal since I've worked for over 30 years. I have to wait one more year qualify for my Medicare benefits. Maybe I will get appropriate treatment at that time. My little sister was recently rear-ended while driving her motorcycle. She broke her pelvis and both legs. They sent her home from the hospital with five days of pain medications. She calls me today crying in pain and has to take an ambulance back to the ER so that she can get another prescription. I was told the same thing, "I guess you might have to go to the ER." From my perspective, this is unethical and inappropriate use of resources. It is just not right.

We are all connected…

Today I'm not having the best day personally, but I am grateful to have this blog so that I can get out of myself. I have home health that sends a nurse practitioner to my home monthly. She was happy to hear about my blog as she has a family member who is also quadriplegic. We talked about isolation and depression and how important it is to have a purpose in life. In a previous post, I urged people to get out to support group, but what I didn't remember is not everyone lives near Berkeley, California. Again, another lucky stroke for me. However, for those who don't live near a support group, there is always online group activity, face time, and webcasts. I cannot stress the importance of connecting with someone. If you're looking for a way to connect and don't know which way to turn please contact me and I'll do whatever I can to help. My profile contains my contact information. In any case, the thought of perhaps being able to brighten the day of someone who lives in another state, but is also quadriplegic and maybe feeling a little alone, gave me every reason to get up and blog today. Always remember reach out to someone, chances are you are helping them more than they help you. Never feel like you may be bothering someone because the truth is, you are probably making their day. In fact, you may be saving their life.

The Bus To Berkeley Blues

Every weekend I try to get out of the house. I usually take the bus and Bart to Berkeley. It is always an adventure to take the bus. This weekend the first bus driver argued with us about the cost. When we dared to question the fare, he said very loudly, "oh, forget it, it's free." Sounds nice but really it was embarrassing. We called the office to see if we could get some clarification. No one in the office knew what the fare should be. I get a variety of answers when I ask the price. It seems like someone should know. On the return trip, the bus driver did not tie my chair down properly. As soon as we took a curve, my chair tipped over and my face was pressed against the window. Luckily my caregiver was able to pull my chair back and save me. I was glad to live through the day. In any case, we had a good time at the Berkeley fleamarket.

The love and support of friends and family…

I am so grateful for the love and support of my friends and family. Without them I would be completely lost. Even people I hadn't spoke with for many years have been in touch with me to offer their support. I feel so blessed. Prior to my injury, I was a grudge holder. Part of becoming an official bad ass meant that I needed to learn how to forgive. What they say about grudges is true, it only hurts you. People with disabilities risk becoming isolated. Isolation and depression are very common. The thing that has kept me going for this last year has been the support and love of all my friends and family. I'm also trying to get out in the world and talk with people and meet people. Tomorrow night, there is a support group for people with spinal cord injuries in Berkeley. My plan is to be there and make some new friends. There are support groups for everyone in every situation. If you are feeling lonely, get out there and make some new friends. Loneliness is the human condition. You are not alone.

Accessible housing

Today I'm very lucky to have received a shelter plus care voucher from the Housing Authority. Most people wait for many years to get this sort of help. There's so much need, and very few resources. Shelter plus care is different than Section 8. It is a form of assistance that includes housing case management. Nonetheless, my rent will be based on my income, which will prevent me from becoming homeless. I cannot begin to even imagine what being disabled and homeless would be like. Since my disability benefits are very close to running out, my income will be dropping by 60%. If I wasn't receiving this assistance I would need to be able to support myself on $300 a month. That would have to cover my utilities, food, clothing, medical supplies, entertainment, and any other expense I might have. Obviously this would make for a very bleak future. Now I have a little bit of time so I can get back to work. Once I'm back to work. I won't need this assistance and I will happily return it so it can be used for another person in my situation. The next big hurdle I will face is finding someone who will rent to me on this program. The rental market is so competitive now that people don't have to accept renters who are on assistance. Still, I'm very lucky to be in my situation, and I won't take it for granted for one moment.

Why blog?

It has been exactly one year and one week since my accident. I was on my way to Los Angeles to go to an opening of an art show when my tire blew out, my truck rolled, I hit a curb, and broke my neck. For those of you who are interested, the art show was Mark Ryden's Gay 90s show (http://markryden.com/paintings/gay_90s_west/index.html). We were so excited to have been invited. There was no way we were going to miss it.  Never in my wildest dreams would I have thought I'd become quadriplegic, but here I am learning a new way to live. I say I'm an Official Bad Ass because you have to be a bad ass to learn how to live with a disability, such as mine. While I was in the hospital, I decided that no longer would I pull my punches, mince my words, hide in the background, or go away quietly. So here I am, my voice loud and proud hoping to make a difference as a disabled person. In this blog, I hope to share my challenges and victories, hopes and dreams, and information I gather along the way. Surely somebody will be able to relate to my story. Perhaps the telling of it will be healing in its own way.