GREs

Pretty much the "kill me nows" of the pain world. You've got all the good stuff- stress, insomnia, sitting ad nauseum, and severe overreading. In any case, I'm off to the gym to try and get out some of these knots. Wish me luck on this godawful test. That they never give accommodations for. Jerks.

mutated hands

The weird pains in my hand lately make me feel like I'm going to mutate, metamorphosize into something great.  Except that it also reminds me of reading a book where a man cut his hand off as an offering to God.  There is a balance, but karma doesn't work like those scales of justice, blindfolded or not.

The ring finger aches the most.  It is on my left hand.  I will not psychoanalyze the possibilities.  The entire wrist hurts anyway.

It is a strange thing to have hurting hands.  It seems like cracking the knuckles should alleviate it some, but it never does.  Still I do it.  What else is there?

Leaving my hand still, it twitches a bit.  Tiny tremors, nothing much really.  And the fingers turn into a claw, the ring finger bent sticking up higher than the others, the pinky far apart, segmented.

From carpal tunnel, the thumbs, but they are improving from yoga.  I hope that something at class tonight will help my fingers.  They throb as I type.

Transabled

I came across this site, transabled.org, while browsing the internet for a colleague who did a piece on BIID and Melody Gilbert's documentary Whole.  I don't much feel like describing BIID, so I'm copying from the transabled.org website:

Body Identity Integrity Disorder, or BIID, is a condition where people who have a "normal" able body need to have a physical impairment. BIID is most often expressed by a need to have an amputation, to be paraplegic, to be deaf, or to be blind. It can be a highly disabling condition where individuals are thrown in deep depression because of the anguish caused by the dichotomy between their psyche and their body.


Perhaps the strongest analogy we can use to explain this need is to compare BIID to Gender Identity Disorder (GID). Someone who has BIID is very much like transsexuals who are in the wrong body and need to "change" sex. The causes are obviously different, but GID is perhaps the best known condition that most resembles BIID.


There is very little research that has been done on BIID at this point. You may find most of what is available on http://biid-info.org. As such, it is not sure if this is a psychological condition or a neurological condition. There is evidence from neurologists in San Diego that there is a neurological aspect to BIID. While many people feel this is a psychological condition, it has not been classified as such in any of the major manual of psychological conditions.


There are no psychotherapies nor pharmacotherapies that have been proven to provide any relief, much less cure, for BIID.


The only thing that seems to provide relief is to acquire the impairment needed.


In any case, I ended up reading about this gal Chloe on the site who has chronic pain.  She wraps her legs in bandages and such.  I haven't really done a good job reading around yet, as I just came across the site yesterday, but I was just really fascinated by the possibilities for persons with chronic pain.  In any case, I wrote a letter to the site owner, though their "contact us" form appears not to be working, so this is probably the only place it exists.  Please, no judgments.  Just let the idea sit with you for a bit because if you don't know about BIID the learning can take longer than you think.  Much love to all.

Letter

Before reading the stories on this site, I was already a strong supporter of persons with BIID, but I didn't realize how many parallels existed between the person with disability and person needing disability.  I'm sure that most people with disabilities are, like myself, initially put off on learning that anyone would want our dismal plights, but the reality of need versus want set in quite quickly for me.  Reading through this site, however, I realized the degree of transabled-ness in myself, particularly through understanding Chloe's feelings as a person with chronic pain like myself. 

The frustrations of having an invisible disability are ever present and irritating, to say the least.  The being looked at like you are "faking" it, the being questioned about why the hell you'd need a companion animal, and the guffaws that accompany requests for accommodations.  I used to wear my neck brace after I needed it because I just wanted people to see that the pain persisted and would always persist.  Then I got a TENS device and began wearing it incessantly, though people seemed to dismiss this as a true sign of pain as well.  There came this desire to have something to show my pain, bandages or a wheelchair or just blood.  Reading through Chloe's story, it finally occurred to me that these so-called desires that plagued my psyche were actually a NEED to some extent.  If I truly explore my thoughts and constant depression at being seen as "able-bodied" I may realize that I too am transabled. 

I am so proud of the people on this site for taking control of their bodies, and I hope that I can learn from these writers and see role models manifested in their stories.  Thank you so much for putting together this beautiful resource.  I wish you all the best.

Amanda

Bad updater

The truth of the matter is I have just been in so much pain lately that I don't even want to write about it.  Well, I do.  Just not straightforwardly.  More in poems and other writings. 

Migraines have returned.  Been taking meds. 

Anyway, I started hot yoga about three months ago.  I think it helps, but then the pain has been quite bad anyway.  Sometimes, I feel compelled to just say that something is helping, like one of the teachers giving me acupressure.  But this feeling more comes from myself-- internalized panopticon!  Or maybe it is just trying to hope and convince myself that things will get more deal-with-able.

Anyway, I'll be updating more, because I do have quite a few thoughts about BIID and Michelle Bachmann's high heel-induced migraines (groan!).

Pain Retreat for Grown Ups!

A while back, I expressed frustration at having difficulty finding any pain retreats for adults.  Well, today I found a center that offers them.  Apparently the San Francisco Zen Center offers a series of classes for folks with chronic pain, chronic health issues, depression, anxiety, and other conditions.  The retreat I've mostly been looking at are "A Day of Practice for People Who Think They Can't Sit Because of Pain and Chronic Illness" and "Helping Women Live with Pain and Despair."  As far as I can tell, these particular retreats are not being offered this summer, but it looks like some similar themes are being addressed, such as "Transforming Depression and Anxiety: A Path of Skillful Compassion at GGF" and "Meeting Trauma and Finding Balance: A Somatic Approach to Zen Practice."

In any case, I will be trying to attend one of these retreats some time next year, as I'll be moving to the area (it looks like the retreats are not all based in San Francisco but in other parts of California as well).  I'll let you know how they work out, if at all.

Here is the info for the pain retreat, which appears to have been last held in 2007. I hope they have another for me to try!:

Tassajara Retreat with Darlene Cohen

Written by City Center Staff

HELPING WOMEN LIVE WITH PAIN AND DESPAIR with Darlen Cohen May 14-16 at Tassajara Zen Mountain Center Grief, anxiety, depression, physical pain, or chronic illness: How do we and our health practitioners deal with such difficult states of mind and body? During this conference we will: 1. Provide specific information regarding the most common pain syndromes in women over the life cycle; 2. Discuss approaches to patient education that target women’s unique needs; 3. Review treatment options for women, including pharmacologic approaches, behavioral interventions and complementary medicine; 4. Explore meditation practice as a palliative to pain. Meditation practice encourages us to live rich and satisfying lives right in the middle of pain. Surrounded by the natural beauty of the Tassajara mountain valley retreat, we will use commonplace activities like eating, walking, talking to develop meditative consciousness and discuss the importance of specific types of pleasure and comfort in lives made difficult with recurring pain and stress. This retreat is for: Women dealing with chronic pain; Health care providers helping women in chronic pain; Non-physicians interested in developing their own resources to help others; Friends or family members who are called upon to offer and sustain a seemingly endless supply of compassion. 6 Behavioral Science CEUs are available for this retreat. Retreat tuition fee $120, Room and Board starts at $185 for the weekend. Darlene Cohen, M.A., is a Zen priest trained at the San Francisco Zen Center. Currently she gives dharma talks and seminars emphasizing mindfulness at healthcare facilities and meditation centers throughout the continental U.S,  She also leads 6 regular meditation groups, 2 for people in chronic pain.  She has written 3 books on the relevance of meditation practice to dealing with physical pain and mental anguish.  See www.darlenecohen.net for audio dharma talks, published articles, and schedule of events

Last Updated ( Wednesday, 14 February 2007 )

Service Animals- California

An interesting piece on service animals from the perspective of an apartment manager.  This piece actually makes me feel a lot more powerful as a person with disability seeking to have a cat live with me as a service animal.  They really DO make the difference, at least in my case.  No haters please-- let's just hear some other stories about folks who got documentation/permission for service animals.

From: http://www.msslc.com/animals.html

Service Animals in a "No Pets" Apartment

By Martin S. Snitow

"I want to have a service animal [dog] [cat]," is a request that is growing more common. Landlords who have a "no pets" policy cannot refuse to allow a disabled person to have a service animal. 24 CFR § 100.204(b). This is an illustration of the federal law that a landlord must make a "reasonable accommodation" to allow a disabled tenant to use and enjoy a dwelling on an equal basis with tenants who are not disabled. 42 U.S.C. § 3604(f)(3)(B).

At first glance, it may seem strange to say that a disabled tenant who is permitted to have a dog is on an equal basis with other tenants who are not allowed any animal. But a service animal is legally very different from a "pet."

Under California law, a "service dog" is any dog individually trained to the requirements of the individual with a disability. California also recognizes guide dogs for the blind and signal dogs (which alert deaf or hearing impaired persons to intruders or sounds.) Civil Code § 54.1(b)(6)(C). California provides for issuance of a special tag to owners or trainers of assistance dogs, a term that includes guide dogs, signal dogs and service dogs. Food & Agriculture Law §§ 30850-30852. Landlords may not refuse to rent to disabled people with assistance dogs. Civil Code § 54.1(b)(6)(A).

Life would be simpler if a landlord could enforce a rule stating: "No animals except assistance dogs with an official tag." However the California law prohibiting discrimination against disabled people with assistance dogs does not say that every assistance dog must have the special tag. Federal law does not even require the assistance animal to be a dog, although in practice most are. A federal appeals court has ruled that a landlord cannot require that a service dog have a certificate from a state-licensed training school. Bronk v. Ineichen (7th Cir., 1995) 54 F.3d 425. By analogy, federal law also would not permit a landlord to demand that an assistance dog have an official tag.

In a recent case, an apartment manager asked a disabled applicant for a document showing that she needs her dog because of her disability. This applicant had trained her dog herself and had no documents from a training school. She also had not licensed her dog and thus did not have an assistance dog tag. The manager did not say what kind of document he wanted. This landlord already was renting to several other disabled tenants. He had accommodated them with a special stove bought for one and grab bars installed for others. The applicant took the demand for a document she did not have as a rejection, and sued.

Any landlord faced with a disabled applicant or tenant requesting an accommodation must tread carefully. A landlord cannot ask whether the person is disabled, what kind of disability he or she has or how severe the disability is. 24 CFR § 100.202 (c). California Government Code § 12955 (b). It is questionable whether a landlord may even dispute the tenant's decision that he or she needs a service dog. Fortunately, the manager in this case did none of these things. He simply asked the applicant to show a document that her dog was a service dog.

A landlord should obtain some evidence that an animal permitted as an exception to a "no pets" policy is a service animal. Other tenants may also want to have animals which are not assistance dogs or other service animals. If you permit one applicant to have a dog without some evidence that it is a service animal, others may feel discriminated against. The applicant in this case was white and childless. Families with children and persons of color who might want a dog could have reason to complain if this applicant was allowed a dog and they were not.

Several months after the applicant filed suit, a federal appeals court ruled in a different case: "If a landlord is skeptical of a tenant's alleged disability or the landlord's ability to provide an accommodation, it is incumbent upon the landlord to request documentation or open a dialogue." Jankowski Lee & Associates v. Cisneros (7th Cir., 1996) 91 F.3d 891. Isn't this exactly what the manager did here? I certainly think so. Does the decision resolve all questions? No, it does not.

Even if you are "opening a dialogue" you still cannot ask about the disability. What can you say? When a tenant says he or she wants to have a dog or other animal you can ask for documents to show this is a reasonable accommodation for the tenant. You can ask the tenant to explain why having the animal is necessary for him or her to use or enjoy the dwelling. Let the tenant explain the situation and ask no questions about the disability.

This applicant sought damages for expenses such as apartment hunting and added commuting costs because the apartment she eventually found was further from her work. She asked for emotional distress damages and requested that all of these damages be multiplied by three under California's Unruh Civil Rights Act, Civil Code § 52. Then she asked that her damages be trebled again under a California statute concerning unfair business practices against the disabled or seniors. Civil Code § 3345. In addition, the applicant sought punitive damages and an award of attorney fees. While the manager did just what the federal appeals court suggested, the landlord faced an potentially unlimited judgment if he lost the trial. Although he had a good case, the landlord decided to settle.

How can you prevent this from happening to you? Unfortunately there is no law or regulation saying exactly what a landlord can or cannot do. A federal appeals court in a case from California ruled that whether a requested accommodation is reasonable is a question of fact, determined by a close examination of the circumstances. United States v. California Mobile Home Park Management Co. (9th Cir., 1994) 29 F.3d 1413. Essentially, only a court decision can say whether a landlord must allow a particular animal.
Is this the end of "no pets" rules? I think there is still something a landlord can do to prohibit pets while protecting him or herself. I suggest that a landlord in California can set the following rule:

"We normally allow no animals without an official assistance dog license or tag. If you have a guide dog, signal dog or service dog, please show us the license and tag. They are issued by the county animal control department or county clerk. If you need a service animal that does not have an assistance dog license or tag, please tell us in a letter or write on the back of your application why this is a reasonable accommodation for your disability."

Give a copy of this rule in writing to anyone who asks to have an animal, whether or not they appear disabled. Someone may be disabled without it being obvious to you. Let me repeat: you cannot ask applicants or tenants whether, in what way or how seriously they are disabled. If a tenant has a dog with an assistance dog license or tag, photocopy the license, copy the tag number and give permission right away. If there is no license or tag but the tenant claims the animal is a reasonable accommodation for a disability, you should immediately get advice from a lawyer who is familiar with fair housing laws.

Copyright © 1997 Martin S. Snitow Law Corporation. All rights reserved.

Road Trip

Well, I guess this long drive went better than others, but it was much shorter.  We drove from Seattle to Portland on Saturday, then back Sunday.  It's only three hours or so, but really any length hurts my neck.  Trying to prevent massive pain (like last time-- with the vomiting and what not), I used this handy neck pillow from Rick Steves:

 

To be brief- it did not work.  The pillow looks like it goes all the way around with padding, but there is actually ZERO padding on the back of the neck, where I wanted it most!  In the picture, you can see a big pad on the part of the pillow closest to us, which is basically all the padding the pillow has.  There is a TINY bit of padding on the opposite side, but that basically ends up under your chin.  If anything, I'd say this pillow did more harm than good, as it causes you to twist your neck trying to get comfortable and rest somehow.  Lame.

On the plus side, we stayed at the Hilton, and their pillows are amazing.  Seriously.  I woke up without neck pain for the first time in years.  My mom was clever enough to ask the folks there if there was someplace to buy these glorious pillows, and apparently you can get them at www.hiltontohome.com.  Of course, they are $70 (includes shipping)...  There really is no getting around paying for quality, is there?

Anyway, I have two other travel pillows to try out before going on a plane for Chicago this Wednesday.  Wish me luck!