deza: (Excellent)
"Oh, you look great!"

I hear it a lot these days, now that I'm off the walker for a bit. It's a bittersweet thing. I know it's meant well, but I wonder what these same people are going to say when I start falling again and have to go back to the cane, or if they see me when I've completely lost the ability to walk any distance. Will I still look great then?

I also know there's a bit of hyperbole in the statement. Let's face it, I haven't looked "great" since about 2003. I can clean up well if I try hard, but most of the time I look exhausted, frazzled, and like I'm in pain. generally I am. While I know most of the people saying this mean well, go ahead and call it like it is. I'm a mess, and I know it. It's ok to just give me a hug and leave it at that.

Then there's the Evil Cousin statement. "You don't look sick." This is generally said with a tone of skepticism. Noting shows to be wrong, therefore nothing IS wrong and I have no right to be using a cane or a scooter or even taking it easy. Since I don't look sick, I'm supposed to keep up no matter what. it's all about appearances, you know.

Now, I'm snarky and cynical by nature, and there are times when my responses to these comments may be a little... sharp. I told one lady that if she wanted to find someone else with spinal fusion issues, I'd be happy to time-share the Kroger scooter. I asked another to have her baby keep its hands off my cane, since I had no idea where the baby'd been.

How should I respond to these statements? I honestly have no idea. Suggestions, please!
deza: (Medical)
I've seen a few blog posts about invisible illnesses that start off with some sort of apology. "I know my illnesses are nothing compared to what __________ lives with...". You know, I get it. I really do. I look at my friend Jen and know that what I feel doesn't compare to her daily agony. I also now that there but for Grace go I. I can only pray that when I'm where she is, I can have at least half the acceptance and serenity she displays to the world at large. I also know just how hard it is for her to keep up that public face, and that she doesn't believe just how good she is at it.

I'm not writing these blog posts to ask for pity or for admiration. I'm not writing about this so people will think I'm strong, or to get folks to understand why I can't do as much as I'd like. I'm not even writing in an attempt to stop getting blank looks and "ankyl-WHAT?" when I rattle off the name of my weird arthritis.

These blog entries are so that every person who wakes up crying in pain and thinking "Oh God, please don't make me get up and face another day of this" knows that they are not alone. It may not make much of a difference at 0dark30 (what's the 0 stand for? 0 God, it's early!), but maybe somewhere someone will find an obscure comfort in knowing that there are other people out there who Get It. There are people who know what it's like to start the day with that bout of despair, and power through it more often than not simply because they don't have a choice. Someone has to go to work, earn the paycheck, care for the kids no matter how much it hurts.

Pain should never be the norm for any person. It's the body saying something is wrong. It's seductively easy to just pop down ever increasing quantities of Tylenol and Aleve and Naproxen and Tramadol and Vicodin while telling ourselves that we're fine, it's just a little ache, no big deal, not worth the worry. Our lives are so busy that who has time to go to the doctor anyway? And if you don't have insurance, there are even more reasons not to get medical help. Thing is, no matter how many excuses we make, something is wrong and it will only get worse over time.

Please, listen to your body. If something is wrong, get help for it. When one doctor can't help you, ask for a referral to another. Only about 10% of hospital visits are from hypochondriacs; if you think it may be you, most likely it isn't. Some illnesses, particularly these invisible ones, take years to diagnose. The only person who can keep pushing for answers for that long is the person suffering. No matter what, don't give up on yourself. You are often your only advocate in this.

It's odd, but when Dr Elliott first held up that x-ray and said "See this? That's ankylosing spondylitis" I started crying. I was crying because I was so relieved to finally have a name for this beast. Those x-rays proved that the pain so many doctors had said was all in my head, take two Tylenol and don't call again, was real and did have a physical cause. Someone finally believed me. Someone understood.

I understand.
deza: (Guinness)
In May I got the diagnosis that my feet were in bad shape, and were only going to be getting worse. Well, that explained why the treadmill hurt so much! I've been using a cane since last June, and dealt with a wheelchair and a walker since the knee surgery. At the moment, I'm actually walking unaided. It hurts, but dammit I'm going to do it while I can. When I start falling again, it'll be time to go back to the cane.

Honestly, I will be back in the wheelchair again at some point in time. I know this. It's one of those inevitabilities in dealing with my conditions. However, knowing that it's coming means I can have some time to prepare for it. I can make sure we live in houses where navigating a chair won't be a problem (mental note, sharp turns from the hall to the door, even when the door is wide enough, are a bad idea). I have a fairly good idea of what the limitations of being in a chair will be. It's hard enough picking up a dropped object while sitting in one of these contraptions; add in a back that doesn't bend all the way, and that pencil on the floor might as well be in Djibouti for all the good it does me.

One of the preparations I'm making now is training my Doberman-mix pup to serve as a mobility dog. I'm very lucky that I got this guy from [livejournal.com profile] leliel last December. I'd originally planned to train him for Search and Rescue work; obviously my body won't live up to the demands of that any more. Right now, he's an excellent furry alarm system. He's not mean; he gets about a foot away from people in his house he doesn't know and barks at them. Once he's introduced, he grumbles a little bit and then happily lays down on my feet with a chew toy. Out in public, he's generally very well behaved. He gets along well with other dogs, is cautiously friendly with people and minds his manners. I've been training him on how to behave in public all along, of course, doing things like going out to the town square to walk around and have lunch in a public space.

We've recently gone through the PetSmart intermediate puppy training together. He'd be doing better with his stay if I'd been in better shape to work with him, but he did graduate and I've got the training tools to start working with him on meeting my specialized needs.


Yes, he does have laser eyes.


Guinness is big enough that he can work as a stability dog when I walk. He walks close to me, and if I start to lose my balance he can catch and steady me. He also gives me a stability point when I'm getting out of bed in the morning. This was pretty easy to train--all he has to do is brace himself and stay still until I can get back on my feet.

He's also getting trained to pull me when I'm in the wheelchair. He really enjoys doing this, because it means he gets to go a lot faster than he normally can with me. He really loves wheelchair ramps. When we practice in the deserted lower halls of the church during the week (with permission) or in the aisles at PetSmart, you can tell he's having a good time. He gets a big goofy doggy grin. We don't do this very often right now. Guinness is just under a year old, and his joints won't be done growing and developing until he's about 18-24 months. I don't want to put too much strain on him while he's developing, but we have been working on the basics.

The third part of his training is the "special tricks" training. He's got switching lights on and off down; actually, he'll do it randomly in hopes of getting a treat. We're working on naming and retrieving objects. He's not quite as good as this--whatever his other half is, it's not retriever! But the advantage of having some time is I can work with him on this. Hopefully be the time I need it, he'll be good on bringing me the car keys, or his leash, or whatever else I need.

A lot of folks have been surprised that I'm training my own assistance dog. Thing is, in the US there is no governing body of assistance animal training. According to the ADA, (28 CFR, sec 36.104),
Service animal means any guide dog, signal dog, or other animal individually trained to do work or perform tasks for the benefit of an individual with a disability, including, but not limited to, guiding individuals with impaired vision, alerting individuals with impaired hearing to intruders or sounds, providing minimal protection or rescue work, pulling a wheelchair, or fetching dropped items.
There are no provisions for who must do the training, or a regulation of the training provided. The law was deliberately left vague to cover a variety of contingencies. If a person is severely agoraphobic and can only leave the house when Bucky the Wonder Hamster is in a shirt pocket, then Bucky is a service animal and is protected under the ADA. A business owner is allowed to only ask two questions of a person entering an establishment with an animal, "Are you disabled?" and "Is that a service animal?" If the person is visibly disabled or the service animal is clearly marked with his job, even asking can be construed as harassment.

Guinness has a minimum of special equipment. He has a harness with a handle in the middle that I hang on to when we're walking together or he's pulling the chair. I have an engraved tag on the harness that has his name and that he's a mobility dog, and another with my name and phone number. Right now I identify him as "in training" when we go out. Most business folk are perfectly willing to allow us access, and I try to make sure Guinness gets enough free exercise before we train that he's not easily distracted. If I were asked to leave an establishment because of the dog I'd happily do so--and not go back. There are enough alternate public shopping places that I'm not compelled to use any one store.

Overall, my experience so far with training Guinness to be a service animal has been overwhelmingly positive. I know what pizza place is fine with him coming in and sleeping under the table while we eat (honestly, there are times when Guinness is better behaved than my 8-year-old son). There are a few places where I'm regularly asked how training is coming. Guinness is happy, because he's one of those dogs who needs something to do. Training keeps his mind focused.


Job well done!
deza: (How I roll)
So it's time for those of us with invisible illnesses to stand up and talk about what we got through. I'll be annoying you with stuff about this all week, don't worry. ;) For those of you wondering, an invisible illness is a disease or condition that doesn't affect outward appearance to a noticeable degree. This includes such fun things as cancer, mental illness and scores of other conditions. Some estimates are that half the current population of the US have some form of invisible illness. So why don't we ever talk about them?

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

To kick off the week, have a meme!

30 Things About My Invisible Illness You May Not Know



1. The illness I live with is:

More than you ever wanted to know )
29. I’m involved with Invisible Illness Week because:
I'm tired of being constantly expected to not talking about it. I'm tired of being afraid of being perceived as whining, complaining or attention-whoring if I talk about the pain. I'm tired of living with the spectre of setting myself up as a target if I'm honest about how I feel.

30. The fact that you read this list makes me feel:
Impressed that you actually plowed through it instead of just skimming by! Thank you!

bad day

Aug. 20th, 2009 06:16 pm
deza: (Default)
I mentioned to a friend that I was having a bad pain day today. She suggested a hot water bottle. While I truly appreciate her concern, it occured to me that she just didn't get what I meant. Then again, how could I expect her to know what it's like? I don't talk about it. If you live with a pain disease, you know what it's like.

So, here's what I mean by a bad pain day.

When my alarm went off, I was already exhausted. I don't sleep well at night; I keep trying to roll over onto my bad knee, which wakes me up and leaves me staring at the ceiling until the pain dies down. So the alarm goes off and Guinness jumps off the bed to be my brace so I can actually stand up and grab the walker. I yell at the kids to get moving and make my way to the bathroom.

I generally use the walker in the mornings. The doors in my house are the same width as my wheelchair, so getting from room to room is difficult at best. I'm in full flare, though, so every time I move with the walker, pain shoots up my wrists and radiates across my back and shoulders. My "good" foot is having fasciitis problems, so standing on it feels like standing on a small canvas bag stuffed with marbles and nails.I have a bad tendency to try to balance myself with my bad leg; it ends up feeling like my knee is being twisted out of socket. This is what I get with every.freaking.step.

There are 6 steps to the toilet, 14 to the kitchen, 27 to the car.

I get the kids up, dressed, fed and out to the car. I can't dose up on pain meds yet because I have to get them to school. By the time we wait through the 20 minute drop-off line, I'm starting to cry from the pain of the redhot iron poker that's replaced my spinal column. I'm so tired I'm having problems keeping my eyes focused on the way home.

I stop at the gas station for a quick hit of sugar and caffeine before I drive off the road. I bite my lip hard enough to bleed as I shuffle-hop to the back door of the car to pull the walker out. The pain of using it hasn't let up. As I'm heading toward the door I get shouldered aside by a pair of day laborers. They make a comment about fucking cripples never getting out of the way. Needless to say they don't bother holding the door, so I get to struggle with pulling it open, maneuvering the walker (which is bulky enough to need two hands) and keeping my balance. The laborers find this entertaining. Sunny the manager is kind enough to go grab my soda for me instead of me stumping through the whole store. I paste on a bright smile and thank him profusely before heading out. Fortunately getting the door open from the inside is a lot easier as long as I remember to lead with my butt.

I make it home, finally take my pain pills and stagger to my bed. Once the meds kick in I'll be able to stop crying. If I'm lucky I might even pass out for a while.

This is a bad pain day. I have far too many of these.
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