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.