Archive for the ‘Disability Issues’ Category

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Dealing with the Pain Issues

Friday, June 25th, 2010

Well, I’m on my way to dealing with the pain issues. I’ve been given a test injection of cordozone in my right shoulder and left knee. They worked for about 6 hours (they were supposed to work that long), and I am suddenly pain free, as I mentioned before.

It’s just such a shock to a body that is in constant pain… not high level pain, but constant pain, none-the-less.
My shoulder is much more noticeable to me… maybe because I haven’t been walking on it, for the past 10 years. The have the pain just GONE within 30 minutes of having an injection.

Today’s doctors are a lot more likely to work with patients who experience pain, and not tell the patient that the pain is all in their head.

One of the things that I am having problems with is that I am having trouble sleeping… I spent all of last night up on the computer, because of the pain of my shoulder. I am tired, but I don’t see me getting any sleep until I can slep a pain patch on, and I can’t really do that until after the radiology appointment, which is later today.


And that’s another thing… I need to get an ultrasound of my bowel, (that’s being done) and an MRI of my abdomen, but that’s not being done because of the intrathecal drug pump… however, I still have to drink a ton of water, and have a full bladder. Sometimes, having a disability really sucks.

Posted in Disability, Disability Issues, General, Personal, Real Life | 113 Comments »

05/24/2010 or how I usually like to do it: 2010/05/24 (without the /)

Monday, May 24th, 2010

I haven’t had any really good sleep in awhile… I need to go back to the Sleep Center and finish testing. I know I’ll be on CPAP, but what I DON’T know is whether I’ll be on BPAP, which I believe I mentioned in an earlier installment. I also have a major migraine, or tension headache. Whatever it is, it HURTS… and I doubt I’ll be able to sleep, except I’m exhausted.

The CPAP stuff is very cool. I went in to be tested, and I guess I stopped breathing 22 times or so in the first 45 minutes, which is normal for the criteria for CPAP. I still need to be tested for BPAP, which will entail another night at the Sleep Center, but that’s okay. Same equipment, just a different setting. At least I know I’ll get SOME sleep, because they will start me on CPAP, and it’ll flood my body with oxygen, and I won’t wake up trying to breathe, and the machine is actually very quiet… if I remember correctly.

But then again, I have a crappy memory… so, who knows. I’m going to do some research on the Internat, before I make my appointment for the testing, and then we’ll see.

Posted in Disability, Disability Issues, Personal | 97 Comments »

Helping others?

Sunday, May 16th, 2010

I’ve been helping others with service dog issues since 1998. I’ve been partnered with a service dog since 1991. I also run and administer the nationally known and rated Service Dogs and More website, which is listed on every search engine you can imagine.

A dear friend, Fred Shotz, who is no longer with us, told the Department of Justice that he considered me one of the top disability and service dog experts. So, when I give out legal advice, people DO listen to me. I can make mistakes, but most of the time, I do know what I am talking about.

Well, a person on Facebook had a problem, and wanted me to call her to talk about it. She gave me her phone number and I called her. She’s flying with her dog and she wanted to put her service dog in cargo, because it’s a 10 month old puppy. She told the airline he’s a service dog in training. And that she needs him. But she still wants him in cargo. The airline wants him in the cabin with her. She’s afraid he’ll have an accident or barf or bark or something.

She even went so far as to call the CEO of Delta airlines. I just have to shake my head. Delta is being extremely accomodating. I told her that her dog IS a service dog at the age of 10 months. I explained about Gillis working for me at 4 months when he picked up a pill bottle for me in public. I then took the “in Training” off his vest.

That wasn’t enough for her. I then explained that when she called the airline, she made it harder for the next person who followed with a service dog in training to get reservations, the airline is going to want to have all this paperwork she’s showered Delta with. This woman insisted that wasn’t going to happen. Delta would know it’s a one time thing. No, Delta will do the same thing to the next person, I’ve seen it.

Then this woman, who called ME for help, had the gall to tell me that I didn’t have the right to tell her she was wrong in what she did. I didn’t do that. I said that what she did was going to impact the next disabled person with a service dog that dealt with Delta. I’ve seen it time and time again. She then told me she’d dealt with service dogs for 35 years. Fine. But, she called ME for help. If she’d already dealt with it, then she didn’t NEED my help.

It really pisses me off when people call me for help and then tell me that I don’t know what I’m talking about. I’m willing to go to great lengths for someone but I will not tolerate someone who tells me that I don’t know what I’m doing and critisizing me when I explain what they did is going to hurt the person that follows them.

Yes, you have to think of you… but if you use a service dog, you are going to get noticed, and you also have to think of those that follow you… we do not want to clean up your mess that you leave behind. I have had too many years of cleaning up the messes of service dog handlers that have come before me. Those that let their dogs eat in restaurants, that allow their dogs to wander off leash, those that let their dogs go potty in public, but don’t clean up after them; that let their dog come up to strangers and sniff them, and of other things.

Our dogs are supposed to be ‘invisible’. There is a movement by the users of guide dogs to get those with service dogs banned from public places, because we don’t need our dogs! I always thought that was stupid but with the way I see some service dogs act and the way some handlers allow their dogs to act, I don’t blame guide dog handlers at all!

This is why I expect almost perfect behavior from my dog… and why I retired Chewbacca after Norwescon this year. He made it CLEAR that he didn’t want to work anymore. I had to drag him out from under every table and he ignored commands from me. He’d never done that before. it was embarrassing and it showed those around me that I didn’t have control of my dog. Impressions. That is a biggie.

Now, I’m looking for a replacement for Chewie. I haven’t had any luck in getting a puppy. And I only want a puppy. I don’t want another year old dog, because of the impressions they already have. I want to start fresh, like I did with Gillis.

Posted in Disability, Disability Issues, Family, Fandom, Service Dogs | 102 Comments »

Ugh…

Saturday, May 8th, 2010

Not feeling too well right now… my head is pounding, and I have an appointment at the UW Center for Pain Relief on Tuesday, May 11. I am seriously considering telling them goodbye, and going back onto my regular meds… they are NOT helping out in making me feel better.

Getting off the pain meds, yes, but I’m in a heck of a lot of pain… and right now, that is not a good thing.. at all.

We’ll see. I will be seeing my PCP on Monday, and then the Pain Clinic on Tuesday, and I’ll see if I can convince them that the headaches aren’t caused by being overmedicated. If that were true, I wouldn’t have these headaches after having my meds cut in half.

My main problem is my knees, my left knee to be precise. My patella (knee caps) are angled in and they HURT. I was getting cordozone shots into the knee caps (and yes, it is pretty much as bad as it sounds – I could NOT watch), but the doctor refuses to do any more shots and wants me to get them done at the Pain Clinic. Well, I called the Pain Clinic TWO months ago, right after my last appointment, and asked about getting the shots. Was told it wasn’t done in that office, it was done in another office, but I didn’t hear anything back. Now, my appointment is on Tuesday, but I’m running a tight schedule, so even if I can get an appointment – I can do it on Tuesday, because I have a pump refill later that afternoon.

I’m ROYALLY pissed. I really want to transfer down to Puyallup, or stop going to any pain clinic at all, but I like the fact that my memory is coming back… so I will keep at it, just not at the UW.

With that, I’ll ask Dr. Khan for a referral to the MultiCare Pain Clinic in Puyallup when I see him on Monday.

Posted in Disability, Disability Issues, Personal | 107 Comments »

Regional Disabled Accessibility Officer

Tuesday, May 4th, 2010

Now I’ve gone and done it! I’ve been complaining for years that there’s been no one for the members of Starfleet to turn to if they have questions on how to help their disabled members. Well, Region 5 Coordinator, Joe Fuller finally told me to write up a job description, which I did. And today, I got appointed, Regional Disabled Accessibility Officer. Here’s what I sent to Fleet Captain Fuller.

Sorry about the formatting, but it’s set in Microsoft Word. The formatting REALLY sucks, so you need to request a copy from me. For those Chapter Chairpersons that want it, it’s available in Word 2007 format.

Regional Disabled Accessibility Officer

Description
The Disabled Accessibility Officer advises the Chapter Chairpersons or others, on concerns of accessibility of events or sites, so that members that fall under the ADA or State Law can fully utilize the goods and services that Region Five, Starfleet offers.
The ADA refers to the Americans With Disabilities Act of 1990.

Region
Summit
Site Selection for Events
Materials
- Printed
o – Large Print
- Audio
- Braille
Accessibility
- Advise Regional Staff on Accessibility on site for:
o – Wheelchair
o – Walker
o – Audio
o – Vision
- Hotel
o – Advise Regional Staff on Accessiblity on site for:
o – Wheelchair
o – Walker
o – Audio
o – Vision
o Rooms
 Help with members booking sleeping rooms
 Blueprints (knowing layouts) to show members accessible/non-accessible features
- Meals
o Restricted Diet
 Advising members/guests of contents so those on restricted diets can be aware of what is in meals
- Tours
o Accessibility of locations and venues
o Alternatives
o Makes arrangements for chapters/shuttles so that businesses have one person/department to go through that understands the ADA/needs of the disabled
Webpage
-Advise Region webmaster on making the Region 5 webpage accessible to the blind/sight impaired
- Advise on options (like audio or video) that will work for all members
- Speech to text so that those who are deaf can enjoy video clips that are added to webpages

Chapter
Meeting Site
ADA compliant
Restroom
ADA compliant
Newsletter
Audio
Offering options on getting chapter newsletters in audio format at little or no cost
Website
Offering to advise chapter webmasters on how to make chapter websites accessible to their members

Posted in Disability Issues, Starfleet, USS Daniel Soule | 1 Comment »

Public Transportation for the Disabled?

Tuesday, May 4th, 2010

Well, this just gets my goat… I have a doctor’s appointment on Thursday… so I call up the local bus service to order a Transit shuttle to take me to the doctor, and they say I have a ‘trip plan’. Which means instead of taking Shuttle directly, I have to take buses, which is a major pain in the you know what. I have memory problems. I also live in a development with no sidewalks, so it’s dangerous for me to go out in my wheelchair to the bus stop. I am not going to do it. I will get bus service to my doctor’s office, and get me reclassified, if I have to go all the way to Tacoma and take their damn tests. Stupid idiots. I can see that for someone who is in a manual wheelchair, or who has sidewalks to go to the bus, but I have neither… and this person probably won’t call me back in time.

AND I have physical therapy on Friday… which means another shuttle trip… and probably another trip plan. I sense problems down the line. I wish I could drive, I really do.

Posted in Disability, Disability Issues | 101 Comments »

Center for Pain Relief (Yeah, right!)

Sunday, May 2nd, 2010

One of the most frustrating things about being disabled is that when doctors just plain ignore me. I’m not the type of person that goes to the doctor every week and complains of pain and asks for something. Far from it. I’m in constant pain ALL THE TIME, due to spastic Cerebral Palsy.

all my muscles are spastic (tight), and that they pull against each other all the time. One set of muscles that does this, and is causing problems are the muscles that hold the knee cap in place. My left knee cap is very off center and has been for awhile. It’s painful, and I’ve only found relief by getting cordozone shots directly into the knee.

Now if you don’t think THAT hurts, you’d be wrong. It does, but not for long… and it sure feels good afterward. But, I can’t watch. I’d be sure to pass out. Just thinking about the long needle going into the patella (knee cap) gives me the willies. And yes, you can feel it, even though the area is numbed before they do the procedure. It’s not painful after the initial injection of Novocaine to deaden the site. I just can’t watch them do it. I would probably pass out if I did. I’ve always been this way.

Anyway, the shots last anywhere from 4-6 months. The last time I had it done, my doctor told me he wouldn’t do it again, as it wasn’t curing anything… well, duh, the muscles aren’t going to loosen up on their own. I had told him I was going to the UW Center for Pain Relief, and he told me THEY could deal with it… well, I’ve contacted them, and they haven’t done anything. And this was two months ago, and it’s been over 6 months since I’ve had my knees shot up. I don’t have much problem with the right knee, it’s my left knee that I really need this for.

I have an appointment for the 18th of May, but the office where this is done is totally different, and if it’s not set up, it won’t get done that day, and the husband has taken the day off so he can take me up there (over 60 miles one way). I guess I will need to call them on Monday and see if my Pain Clinic doctor has gotten a referral written so I can get my knees injected.

I’m not holding my breath, though. For all that the facility name is “Center for Pain Relief”, the doctors sure don’t do much in that way. I am being weaned off my oral meds. First getting off the norco, then taking half the dosage of morphine and they wanted me totally off the morphine. I don’t think this is gonna happen. I’m not being unreasonable when I want to have the pain gone… they don’t seem to care about that… I did want to get off the narcotics due to side effects, but not at the expense of all the pain I’m in.

I’m about ready to tell them goodbye and just stick with my PCP (Primary Care Physician). I only decided to start seeing them is that my doctor moved to a practice that doesn’t do chronic pain meds, but most of his practice was that, so he moved into his own office. So, I don’t have to worry about that. My doctor even supplies me with the meds I normally would be taking, I just don’t take it unless the pain gets really bad.

I just can’t see myself just taking amitriptyline, especially because of my right shoulder. I’ve been a good girl and gotten off the Norco, but sitting here in pain… isn’t cutting it. I’m taking 1 morphine a day… nope, gonna go back on the Norco, I think. Or two morphine. I just haven’t decided what yet. I have Norco, but am running low on morphine. And those are narcotics, so you just can’t get a refill. Have to go see a doctor. Which is fine, if the husband would have a day off soon.

I think it would be better if my shoulder wasn’t killing me. If the shoulder was not injured, I’d probably be in a lot better shape, but with the way it is, forget it.

Posted in Disability, Disability Issues, Personal | 100 Comments »

Why This Title for my Blog?

Saturday, May 1st, 2010

Why the title, “Hire the Handicapped, They’re Fun To Watch?

“On the face of it, it sounds really discriminatory. But since I am disabled, you’d think I would run screaming the other way before I’d choose a title that was such. Well, no, not really. There is a story behind the title.

My best friend, Daniel Soule, was also born with Cerebral Palsy. However, he didn’t let that stop him from leading a more than normal life. I say more than normal because he didn’t just sit around doing nothing. He was a truck driver, a volunteer firefighter, a hunter, you name it, he probably did it.Now, this was before the ADA (Americans With Disabilties Act), and before “disabled” became more politically correct than “handicapped”. Dan coined the phrase, “Hire the handicapped, they’re fun to watch.” when people would avert their eyes when he or other friends would walk down the street or wheel down the street. Yeah, when I could walk you could tell I was disabled. Dan too.

Keith, (the husband), described Dan this way: He looked like Burt Reynolds, but walked like Donald Duck. I always laughed when I heard that… and Dan did too. Now, if Burt Reynolds had bright red hair, maybe Dan would look like him, maybe… but it was hilarious.

Dan’s outlook on life, was unique at the time, he wasn’t your normal stay at home, and be ‘unnoticed in public’ type of disabled person, either. Dan was the type to just go along his merry way and live his life. Why hide? He had nothing to be embarrassed about.

Yes, he was born with Cerebral Palsy, but it wasn’t his fault. Just like it wasn’t his fault that others were embarrassed if they didn’t like it when he walked down the street.

Dan died way too young when he was helping a friend move. He was at the bottom of a Amateur Radio antenna when it broke in half and connected with a power line. Dan knew he’d been electricuted. He ran down the road, yelling he’d been electrocuted. If he’d been abled to be saved, he would have been. His First Aid instructor was riding by on her horse. Medic One was just a few minutes Away. Airlift Northwest was left than 10 minutes away… but to no avail. Dan was taken to Harborview Medical Center in Seattle and spent 4 days there, while the doctors tried to get him stable enough to do tests. When they did the tests they found he was brain dead.

He had no family. *I* was the closest thing to family he had. We’d known each other since I was 18… I had to make the decision to pull the plug. Hardest thing I’d ever done. I spent four DAYS at Harborview waiting for word, and even though Keith and I weren’t family, they treated us like we were… and then, they gave me the decision to pull the plug. It wasn’t a decision really. Dan was no longer there. He’d died 4 days earlier. It was his shell laying there… it took me YEARS to accept that… but at the time… anyway. I made the decision and Keith and I cleaned out Dan’s house. He had no other executors for his estate. We held a funeral for him. And I buried my best friend. We were soulmates, or as close as could be. I do believe I married my soulmate and that wasn’t Dan.

When Keith and I decided to start our own Star Trek club, it was really no decision to name the club after Dan. I still can’t believe that Starfleet International let us do it… it was an honor for them to grant us this… twice. Yep, twice. For reasons beyond my control the first club folded and then was reborn, with a new NCC number, but the new club is still here, but needs help.

If you’d like to join… go to http://www.sfi.org. and join Starfleet. No dues other than the Starfleet dues of $15 per person or the Family dues. I’m working on the website (again) and the newsletter, but it’s slow going.

We are a Correspondence chapter, and will do things via email, Facebook, blogging, and using other means to communicate. I want to get the newsletter up and running and get the chapter up and running so that we can be active and a force to be reconned with. I can be reached at danielsoule@danawheels.net.So to answer the question, why did I title the blog this way? To honor a dear friend’s sense of humor and it fits me. It really does.

Posted in Disability Issues, Personal, USS Daniel Soule | 1 Comment »

Stupid injuries…

Monday, April 26th, 2010

I’m ending month number 3 with a injured right rotator cuff. I bruised it, and when I move, it hurts a lot. And I’m not taking narcotics much anymore… I’m taking morphine and Norco for the pain, although, the UW Pain Clinic wants me to cut out the Norco and then wants me to cut out the Morphine and just continue with the Amitriptiline. I don’t think that’s going to happen.

Well, my next appointment is in the middle of May. We’ll just have to see what happens.

Posted in Disability Issues, Personal | 1 Comment »

Getting ready for a Landing Party!!!

Wednesday, April 21st, 2010

This weekend is the Starfleet Region Five Conference, the first that Rear Admiral Keith Marshall and I, Fleet Captain Dana Marshall have attended in our twenty-five years of being members of Starfleet. I’m pretty excited. I’m working on not just attending the conference, but also presenting to the Regional Coordinator, the duties of the Regional Disabled Accessibility Officer that I am trying to get added to the Regional Staff. He likes the basic idea, but I haven’t been real specific as to what the positition entails, just someone for the Commanding Officers of Starfleet Region 5 to go to when they have questions in regards to disabled crewmembers.I’ve been thinking of this position for awhile now, but haven’t approached Fleet Captain Joe Fuller (the Regional Coordinator) with the idea until recently. He said to write him up the description and we’d discuss it, and discussing it at the Regional Conference seems to be the thing to do, so… I’m going to be bringing it up to him there.

Posted in Conventions, Disability Issues, Starfleet, USS Daniel Soule | 4 Comments »

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