Tuesday, November 10, 2009

Wheelchair Seating Clinic

I have an appointment with the wheelchair seating place at the big elite medical center in mid-December. I love you, Dr. Rheumatologist! I think this process is new for him too, as most people just get a prescription and go to the vendor insurance recommends or directly to a vendor they know about (as I did before). So we'll see--at least getting an appropriate cushion that will fit and that relieves pain will help a lot. I have a full prescription rather than just a cushion prescription so we can do what's needed (a combination of my expertise about my body and a therapist's about chairs). He's also glad to help with forms for the service dogs. He did not realize I often cannot get out of bed by myself.

I have to see a pulmonologist before trying Enbrel (but that was the only specialist I didn't have!). Probably for the best since I have had a mild cough since September--don't want to give myself a b bad infection. Le sigh. No le torture wanted. I am having weird nail changes/finger pain due to arthritis, so dermatologist in January.

Worked it out with a few people who weren't talking to me and found out what some of their fears were with talking to me (something that never occurred to me about me looking like I needed help but not knowing if they should offer). Now I feel more comfortable at one of the kids' weekly activities.

Tired mama.

Advice? Things I should know or consider?

Friday, November 6, 2009

Service Dog Apps and Wheelchair Seating Clinic

I have started the service dogs apps and met with one of the local organizations. The concern is whether I can make it through the training and whether I could be too disabled to qualify (ironic since obviously there are people with far more immediate physical limitations--but who may be able to be out more and sit up more). I really like the dogs and the training with the local organization--though I will apply to several because of the waiting lists and because I may not be accepted to all (or any). I will apply to three organizations that are local or where friends/family live with whom I can stay during training, as I can't afford the training otherwise.

I am also working on improved wheelchair seating--whether a better cushion or something more customized than the scooter--and let the service dog organizations know I am doing this, because that increases my independence and decreases pain. The process makes me want to cry in frustration, and I don't want to deal with insurance again, but I've started the process and we'll hope for the best. I didn't even know about seating clinics last time--and that's what I'm seeking a referral to this time.

I've explained to my doctor that I'm too young to be this housebound, that my husband may have to work for a year in another state on contract work (leaving me without assistance--but we can't afford two moves a year apart)--I need to do what I can to keep myself independent. Most of these jobs are temp to hire--wanting to try someone out before committing. I've told him to go for it, that we have to have ome kind of income. Besides, he is unlikely to be able to telecommute with a new job even locally, based on what's available--at least starting out. I've explained to my doctor that service dog organizations make the decisions and prioritize their waiting lists, that I'd not be taking a dog from someone else--and many of them do assign dogs to people who have lesser disabilities, even people who can walk but who need the assistance to be independent or hold a job (yes, I need that assistance to hold a job outside my home, as I'd like to do--the longer the hours, the more I need the dog, or rather, a dog will help me maximize my hours). While the waiting lists are two to five years, I am not going to get one by continuing to not apply to new places. One organization with whom I'd applied had tragedy strike (death of owner), while another I had applied to--I really liked the director and the dogs--is out of reach because we would have to fly rather than drive. I had just put everything on hold because of unemployment--even the costs of applying concerned me. No longer--it's not helping.

I have a feeling God needs me to take care of myself before He can take care of more. Right now my husband feels horrible about the idea of leaving me without help--for a workday or more generally if he has to work out-of-state on contract work. But we will figure things out somehow--we will. Even when we're upset with each other, he'll still help me to the bathroom while we're mad or get things I need but can't.

Let's hope for the best--improved seating and a working partnership and companionship from a service dog. I can get up with the help of a quad cane, for example, but often it's out of reach and sometimes it falls.

If anyone else is on the spondylitis spectrum, here's an article on someone with spondylitis who has a service dog:

Tuesday, November 3, 2009

Laura Hillenbrand on Chronic Fatigue

If you haven't had a chance to read Laura Hillenbrand's essay on the development of her chronic fatigue and how she managed to write Seabiscuit paragraph by paragraph, it is well worth your time to do so: