Pain Management

I saw this headline and immediately said “No shit”.

Millions of Americans in Pain Without Meds

I have chronic pain. At all times, something is hurting. And what prescribed medication do I currently have to assist with my pain relief? I have a muscle relaxer that knocks me out, makes me more stoned that Vicoden. Yet I can’t get more Vicoden. Why? My GP is one of those who doesn’t like prescribing it. But the orthopedist I was seeing for the broken leg was pushing Percocet on me like it was candy. (and yes, I kept the refills)

I have seen two so-called pain specialists. Both were needle happy and never discussed medication. One dumped me after only a few weeks because my condition did not fit his box. He was incapable of thinking of how to help me. I disturbed his assembly line procedures. The second doc, bless his heart, did try. He not only did injections (lots and lots of them) but also tried mechanical devices such as a water pump heating pad system. But even he would not prescribe any kind of narcotic pain medication. He knew I was not abusing them. He had evidence in front of him that I was, indeed, in the pain I said I was. Yet, he would not touch narcotics.


“Many people suffer needlessly with pain that could be treated, and almost 80 percent of visits to community pharmacies involve pain issues,” said Hahn, lead author of the research articles. “We’re in the middle of a storm here, and have to figure out some way to navigate through it.”

At least 30 percent of patients with moderate chronic pain and more than 50 percent with severe pain fail to achieve adequate relief, Hahn said. In these and earlier works, Hahn suggests the shortcomings are due to inadequate physician training, personal biases, and doctors’ fears of prescription drug abuse.


Argoff, who was not involved in the current studies, pointed out that there are many different avenues to treat pain, including massage, opioids and behavioral therapy, so a short course can’t possibly teach each of them. “Nobody could leave medical school without learning how to read an EKG, so why should they leave without a basic understanding of pain management?”

Not only that, Argoff said that inadequate medical training leads to “irrational fears” that pain meds will be abused, and a bias that all pain patients are drug abusers. “Any medication can be misused or abused,” he told LiveScience. “It doesn’t have to be a pain medication.”


Physical Therapy

Since my PTist reads this blog, I must be careful what I say. (hi Marion!)

After much thinking, pondering, and consideration, I have this to say:


There. I feel ever so slightly better now.

Actually, PT has been going rather well. I can do a lot more now than when I first hobbled in. Some things are going great, others not so well. And with me, there will soon be a line where we have to consider if the problem we are working on is because of the break or because of the EDS.

I get on a stationary bicycle and ride for 5 minutes forward then for 1 minute backward. That hurts my hips more than my knees but the gentle movement is good. We had a good laugh because we had to really lower the seat before my toes could touch the pedals. The previous user must’ve been very tall!

I use an elastic strap (the green, for those who know this stuff) by making a loop from behind my knee to a stationary object. I then straighten the knee, pulling on the strap. The hard part isn’t always the pull, but the release which must be controlled.

I lay on my back with my legs up on my wedge pillow. I then lift the lower leg off the pillow then lay it back down. Sounds easy, right? Ha.

There’s others but at the moment, I can’t think of them. I have a list somewhere….

I’m supposed to do these things at least once a day, some of them several times a day. Most days, I do. Others, not so much.

I’ve had a heck of a time with swelling so Thursday we started doing some woo-woo lymphatic system stuff that is akin to strain-counterstrain. The problem with doing this with me is often the position necessary compromises a joint or two. Another PTist (who I trust completely) nearly dislocated my hip. What I felt and what she felt as it started coming out made both of us ill. Marion is very aware of the potential but I trust her completely too so I let her do it.

Crip News


99 Arrested as ADAPT Blocks Independence and Constitution Avenues on the Hill, then Crawls Up the Capitol Steps

April 28, 2009

Washington, D.C. — ADAPT, the nation’s largest cross-disability, grassroots disability rights organization, took the fight to include long-term services in Health Care Reform up to Capitol Hill today. On Monday, Obama administration officials made it clear that the administration was not going to provide leadership on getting long-term services included in health care reform, saying it was up to Congress.

“I guess what happened at the White House kind of got us wondering who is leading the country, the President or Congress,” said Bob Kafka, ADAPT Organizer from Austin, Texas. “Sad to say but President Obama gets a D on disability rights after his first hundred days. Throughout his campaign and currently on his website he promises to support independent, community-based living for Americans with disabilities by enforcing the Community Choice Act, which would allow Americans with significant disabilities the choice of living in their community rather than having to live in a nursing home or other institution. Many of us who voted for him feel angry and betrayed that he isn’t keeping his promise.”

The Community Choice Act (CCA) (S. 683, HB1670), introduced in March 2009 by Sen. Tom Harkin (IA) and Rep. Danny Davis (IL), would remove what is known as the ‘institutional bias’ in Medicaid. B Currently, Medicaid pays for older and disabled people to go to nursing homes and institutions, but won’t pay for the same assistance, generally at a lower cost, in a person’s own home. Many states have limited or no home and community based services with lists that keep people waiting for years in institutions and nursing homes before they have any hope of getting services. Some wait so long they die before their name reaches the top of the list.

“It’s no surprise we decided to have a presence on Capitol Hill today,” said Mark Johnson, ADAPT Organizer from Atlanta, Georgia. “We blocked streets to make it visibly clear that we aren’t going awayb& and we won’t go away until CCA passes or is included in Health Care Reform. Research has shown that people who live in the community are healthier and have fewer secondary conditions. It’s fiscally irresponsible to increase health care costs by not insuring that people have the choice to receive services and supports in their own homes. And it’s bad policy to put all the dollars only into front-end health care, once again denying people with disabilities their civil rights and forcing them to continually be the last people served.”

After police arrested 99 people from both the House and Senate sides of the Capitol, the remaining 400 ADAPT members went to the Capitol, many spilling out of their wheelchairs and crawling up the Capitol steps to hold an impromptu CCA rally, reminiscent of the famous stair crawl on the day the ADA was passed in 1990.

ADAPT winds up its week in Washington on Wednesday by holding a joint rally with SEIU, the fastest growing, largest home care union in the country, with a membership of over 420,000. Sen. Harkin will speak at the rally, as will an ADAPT member and his SEIU attendant. People with disabilities and seniors want workers who are paid a living wage, who have health care benefits, and time off. Supporting a fairly compensated workforce reduces turnover, increases reliability and insures a better trained attendant workforce for those who need assistance in their daily lives.

“After the rally, we will go in teams to visit every member of Congress, asking them to co-sponsor CCA and include long-term services in Health care reform,” said Barb Toomer, ADAPT Organizer from Salt Lake City, Utah. “There will be well over 1000 people visiting Congress on Wednesday from a number of different disability and provider groups, all with the same message: pass CCA and include long-term services.”

FOR MORE INFORMATION on ADAPT visit our website at

I used to work for United Cerebral Palsy of Mercer County (NJ) as the Program Coordinator for the RespiteOptions program. My job was both cool and frustrating as heck. I had a staff of respite workers that went to the homes of people with disabilities and stayed with them so the caregivers could have time off. While there, the respite workers did everything from helping with homework to bathing. This gave the caregivers (usually exhausted parents) time to get away and do their own thing. Some caregivers did the grocery shopping or had dinner out or even just took a long nap. For the most part, this was only for 40 hours a month but for most of the families, it was what they needed.

We were funded partially through the United Way. When the program first started, they (UCP Mercer) thought that with the respite care, a family would eventually no longer need the help. It turned out to be the opposite. And the United Way wanted to see more families being served but with the same amount of funding. One year, a young mother of a daughter with severe disabilities did some research. The state of NJ did not have an institution with the level of staffing her daughter would need. Instead, she would have to go to (I think) Indiana. And NJ would have to foot the bill. The cost of a single year for this one pre-teen girl? Over $300,000. For one child. Our yearly budget to serve 40-50 families a month? $100,000. This mother admitted that without that scant 40 hrs a month, she would not have the energy to keep her daughter at home. United Way got the point and continued to fund the program. Remember, this was way back in ’88 or ’89. Prices have significantly increased since then.

It has been proven over and over that keeping someone at home is much cheaper than paying for institutional care. When in their own home (or even a small group home) the person is happier, healthier, and either improves or maintains their level of abilities. My friend Jean has managed to keep her son Sam out of an institution. She’s had to prove how much better he is at home in order to keep his nurses. In an institution, Sam would not have advanced as far as he has since his brain injury 3 yrs ago. The nurses are much much cheaper than the institution would be yet she has to fight and appeal on a regular basis.

Medicaid and Medicare could save themselves a chunk of change by allowing folks to stay at home. Institutionalized care is a model that does not work for all people. When someone in their 30s has to live in a nursing home because Medicare/Medicaid won’t pay for home nursing, that is wrong on so many levels.

Chair Parts

Monster Blue got some updates yesterday.

Permobil makes excellent chairs. Unfortunately, they had to “dumb” them down in order to meet the Medicaid/Medicare requirements. So things that normally are nice and sturdy were made cheaper and not as sturdy. The best example are the armrests. Cheap plastic with metal only going part way. Which means when a user pushes down on the armrests to transfer, the stress is on the plastic. Mine broke within just a few months. The pad was a cardboard backed, foam covered barely in place thing. I lost one on the way to Atlanta for my first GCLS con.

(larger image of left armrest)

(larger image of right armrest)

The new armrests have metal all the way out and, better yet, are universal. Meaning one can go on either side. The other ones were side-dependent.

underneath of the new armrest:

Universal fit:

I also got some thigh pads. This will help keep my legs aligned and look less like a harlot with my legs spread.

(larger image of thigh pads)

(larger image of left thigh pad)

The thigh pads fit into a doohickey called a Unitrack. Permobil developed this to use to attach various doohickeys to the chair. This includes the pads, transfer handles, and even a lap tray.

(larger image of Unitrack)


I’m still having internet problems. I am at the laundromat right now with the fastest upload/connection speed I’ve had in weeks. One last call to Charter today and it’ll be fixed, one way or the other.

Word Count Reasons

For those who don’t know, my word counts can be high because, well, I have no life.

I don’t work. I don’t have a hubby to clean/cook/prepare for. My wife/spouse/partner does our cooking, laundry day is on Friday and I bathe every Saturday, whether I need it or not. We don’t have kids but we do have dogs and cats, all of which take care of themselves except for the twice a day feeding rituals they make us do.

With so little obligations, my time is more open than you normal folk who have jobs, like to cook and clean, have children, care about your appearance, stuff like that. You know, have normal lives.

So please, don’t be envious or jealous. Don’t admire me for my skills in putting out a high count of crappy words. And please, don’t wish you were me.

‘Cause sometimes, I think I just might take you up on that.


PS: Don’t think I am strong, or brave, or admirable. I’m not. I’m just doing what I can with what I got.