Archive for the ‘Real Life’ Category

There are times…

Thursday, May 17th, 2012

That I really hate being disabled. And those times usually happen when something impeds my ability to get around. Right now, my motorized wheelchair, which I’ve had for a bit over a year, is throwing out error codes and when it does that, it beeps, and doesn’t go anywhere. *sigh* This started happening SATURDAY. I called the place where I bought the wheelchair, and they aren’t open on the weekends, unless it’s an emergency, and since Keith (my significant other) was here, they didn’t consider it to be an emergency, the repair guy couldn’t get to me until yesterday. Oh, really. And then, yesterday, my cellphone wasn’t working correctly, because the repair guy said he kept calling and leaving voice mails and I don’t have any record of that. So now, he’s coming tomorrow. We’ll see. I’m just basically stranded. The wheelchair is SORTA working. I can’t depend that it won’t start throwing out error codes again and just stop in the middle of whatever (the error codes basically state the joystick is out of center), and it caused me to have to use the wheelchair with the attendant joystick… which is a major PITA, because it requires BOTH hands, and doesn’t allow me to carry anything.

I was teasing Keith about his driving skills in regards to my wheelchair (using the attendant control), and I pretty much suck at it… *sigh* It’s harder than it looks. And I’ve been using a motorized wheelchair for nearly 10 years. One control change and I’m in trouble.

US Sues AT&T over Relay Service for the Hearing Impaired!

Tuesday, March 27th, 2012

Well, this is a new thing for me… talking about something out in the news. But, since it affects the disabled in some way, I figure it would be of some use. The US Government is suing AT&T for payments made to AT&T by the US Government for usage of their Relay service for the hearing and speech impaired. Each time a call goes out, there’s a payment that AT&T gets for usage of their lines that the government makes because they are complying with the law. However, it’s come to the government’s attention that the callers weren’t really disabled, but that they were Nigerians doing scamming and that they were using the free service to fasciliate those scams.

The way the Relay Service works is that a person calls a special number with a TDD and the Relay service calls the number that the disabled person wants to get in contact with and becomes the bridge between the voice call and the TDD. They do not edit what is said, they type exactly what is said on both sides. Type for one, talk for the other. It’s exacting work, and you have to be trained in it.

Now the US Government is saying that AT&T knew that the Relay service was being used by scammers and they want their money back that they paid AT&T. The volume of the calls rose 95% and were from out of the country. That’s a red flag right there.

PC Magazine reports that the government wants to service the disabled, but won’t tolerate scammers, and I wouldn’t either.

Let’s hope they can get back the $16 Million that the government paid AT&T. Unless and until AT&T can figure out how to (or actually DOES) screen the callers to make sure they really are disabled, I think the government is right to ask for its money back.

Transportation Update

Monday, March 26th, 2012

I called to get signed up for the Transportation service, and found they only have one van. I offered the use of my lift equipped van to transport me to my various outings so they don’t have to take their van to transport me, since I only need a driver. The person on the phone was going to talk to someone at a meeting tonight about my suggestions. Being that I’m so in tune with disability law, and how things work, I could make suggestions to ease their burden of helping and get service for myself as well. Yeah, I want to use their service, but I don’t see any reason to take their van when mine does just as well. No one else can ride with us, but that’s okay, as long as I pay for my own gas.


Monday, March 26th, 2012

I was handed a folded piece of paper yesterday… it was a small ad for a paratransit company for the five cities in the valley here. It won’t take me to my PCP (Primary Care Physician) or Pump Refill appointments, but it’ll allow me to get to Physical Therapy. It runs from 9am to 2pm Monday-Friday. Costs $5, (donation), but I think well worth it. It’s FAR better than being stuck at home. I just have to find a place that will take me and do PT with me as Apple Physical Therapy wants nothing to do with me, as they feel a neuro PT would work better. They sent me to Good Samaritan Hospital in Puyallup, but the hospital is down two therapists so they aren’t taking new patients. *sigh* And the paratransit won’t go that far. Only local. Say 10 miles. So, I’ll have to do research. I hope there’s a place that does PT around here.

I’ll also be able to go shopping and do other errands. No longer stuck at home and dependent on my inlaws and husband for going places.

What to do…

Sunday, March 18th, 2012

Keith (the significate other/husband) just told me he doesn’t think that I should be walking, because it’ll cost too much, and it’ll take too much time. NOW what do I do? My doctor wants me to walk, Keith doesn’t want me to. I think it’s stupid myself, but I do have a few goals in mind that will require greater leg strength in the future. More on that later. But for Keith to tell me, NO, he’s not going to take me to PT, or get my braces fixed… ouch.

Dr. Khan won’t be pleased, and when I want to do this special project in October, I doubt he’ll be supportive because I didn’t go to physical therapy now.

The thing is, the local physical therapy place doesn’t want to talk to me, they want me to go to a neuro PT place, and the local hospital is down 2 therapists… so I need Keith to help me get to PT, as I can’t depend on my mother-in-law for that… and he just shot me down. And what I want to do in October, will require leg strength.

In Limbo…

Pet Peeve

Monday, January 30th, 2012

Why is it that most of the time when someone asks me why I’m in a wheelchair and I tell them, they say “I’m sorry”? I CHOSE to use a wheelchair when I was 21, because it hurt too much to walk, and took too damn much energy.

I have Lymphedema

Sunday, October 2nd, 2011

The vein condition that has been plaguing me for the last year or so has finally got a name. Lymphedema. And I’ve finally gotten some expert help. No, “Here’s some compression stockings, you’re on your own.” (which is what happened when I was first diagnosed).

Nope. During my last intrathical pump refill, Dr. Nutter, (see previous journal entry) took a look at my swollen and mishappen feet and sent me to Good Samaritan Hospital’s Lymphedema clinic. I start twice weekly visits this week. My first visit was last week, and I was given a packet of information to read and I was told a ton of information.

What is lymphedema? Basically, it’s the collapse of a section of the body’s lymph node system. The lymph nodes carry out the garbage that is filtered out of the body by the blood and into the kidneys. When the lymph nodes don’t do their job, the crap, gets stored in that section of the body and STAY there. The garbage doesn’t move out and into your kidneys to be flushed out like it’s supposed to. Lymphedema basically means that the crap stays in the veins and it’s caused my legs to become huge and misshapen (especaily at the feet). In layman’s terms, it’s the collection of fluid, in the arms and legs. It only effects my legs, however.

The treatment is massage, and compression garments (first, ace bandage type wrappings, then custom ‘garments’ (that basically wrap around the affected part (in my case, my lower legs) to squeeze the blood back up into my body. Which then dumps the crap inot my kidneys and then flushes it out of my system. I can see lots of bathroom runs in my future. The “basic kit” costs over $100. Insurance will not cover it. And each visit for getting my legs wrapped and massaged as a co-pay of $30. At least the kit is reusable. Keith will need to learn how to wrap my legs, so we can save $30 a week, otherwise, I’d need to go in a 3rd time, to do this, as I’m supposed to do this every 2 days. Someone on Facebook suggested opening a bank account so that people could donate money to help me. I don’t like asking for charity, but $60-$90 a week is more than I can afford. However, I won’t be able to open a bank account. Keith would never allow it. So, if someone wants to do it on my behalf… send me a message, either on Facebook, or via email ( I check emails frequently. (I finally got Outlook 2007 running).

A Doctor Extraordinaire!

Thursday, August 4th, 2011

I have the most amazing doctor… Dr. Paul Nutter handles the administration of my intrathical drug pump. The hockey puck sized device that delivers baclofen into my spine to relieve the spasticity that causes me to not be able to move hardly at all.

Why is he so amazing? I take Pierce Transit’s Shuttle to my pump refill appointments each month. Because of budget cuts. Pierce Transit is eliminating bus service AND Shuttle Service from where I live, basically stranding me at home I will only be able to go to appointments when family has the time to take me. I explained all this to Dr. Nutter explaining that my mother in law has days off that are NOT the same days as pump refill days and wondered what to do… turn off the pump, theeby causing me to not be able to move? Well, before THAT statement was out of my mouth, I had commented on what days off my MIL had and when she could bring me in for a pump refill, so he is using his LUNCH HOUR to refill my pump I don’t know of any other doctor that would do that.

ParaTransit Service

Thursday, June 23rd, 2011

I’m slated to lose access to Paratrransit service October 2nd, due to budget cuts. The local transit company is cutting off an entire neighborhood because they only have to provide Paratransit service 3/4 mile from where fixed route service runs and they cut out the regular bus that runs in Bonney Lake. So, those of us that can’t drive and can’t walk to the Park and Ride are screwed. I wonder how Pierce Transit is going to handle someone on dialysis who can’t get to their appointment? I know of a few that live near me. Me, I have my inrathecal drug pump that has to be felled every 6 weeks. It it’s not filled on schedule, I”ll just have mjaor muscle contractions,but I won’t die. There’s supposed to be a flyer coming out in the mail that details options. I hope there are other agencies that will pick up where Pierce Transit dropped the ball, otherwise, I’ll have to depend on family, and while the inlaws are great, they can’t take me everywhere…my pump refills just got changed to Tuesday/Thursdays and my MIL works on those days.

I guess we’ll just have to see.

Sleep Apnea

Monday, April 18th, 2011

Well, if it weren’t enough that I have to deal with Cerebral Palsy, I have been diagnosed with sleep apnea.

Sleep Apnea:

Sleep apnea (or sleep apnoea in British English; English pronunciation: /æpˈniːə/) is a sleep disorder characterized by abnormal pauses in breathing or instances of abnormally low breathing, during sleep. Each pause in breathing, called an apnea, can last from a few seconds to minutes, and may occur 5 to 30 times or more an hour.

There are three types of sleep apnea:

1) obstructive sleep apnea (OSA)
The it is caused by a blockage of the airway, usually when the soft tissue in the back of the throat collapses during sleep.

2) central sleep apnea (CSA)
Unlike OSA, the airway is not blocked but the brain fails to signal the muscles to breathe due to instability in the respiratory control center.

And a combination of Obstructive and Central Sleep Apnea

3) Mixed or Combination Sleep Apnea

And not just any sleep apnea, but the most rare of the 3 types.
*Information about Sleep Apnea was taken from WebMD (http://

In looking at the symptoms of Sleep Apnea, I wonder how I never came across this diagnosis before, as I experience more than one of these symptoms!

Common sleep apnea symptoms include:

    Waking up with a very sore and/or dry throat
    Loud snoring
    Occasionally waking up with a choking or gasping sensation
    Sleepiness or lack of energy during the day
    Sleepiness while driving (I don’t drive, but I have fallen asleep RIDING in a car)
    Morning headaches
    Restless sleep
    Forgetfulness, mood changes, and a decreased interest in sex
    Recurrent awakenings or insomnia

The treatment for sleep apnea can range from life style changes such as losing weight to machines that alllow for a continuous airflow, called Continuous Positive Airway Pressure or CPAP. There is a level above CPAP, BiPAP, for BiLevel Continuous Positive Airway Pressure and I’m actually on Assisted BiPAP. Basically it’s all controlled by a computer, The computer monitors my breathing and adjusts the flow accordingly. Ain’t that just special?

Sorry, sarcasm isn’t going to to change the facts. Basically, I have had a major shock to my life, and now I have been told to deal with it. And to deal with it, I’m going to be strapped to a machine at night for the rest of my life.

So, my memory problems haven’t been from been overmedicated, they’ve been from the sleep apnea! Sheesh! I can’t wait to tell one of my doctors this and see what his response is! Maybe he won’t be trying to get me off all the pain drugs, which is basically putting me through hell.

All of my symptoms that he’s attributed to overmedicating are also symptoms of sleep apnea!

I am still feeling my way with the system. I lost a small piece of the mask a few days ago. Hopefully, I get that replaced tonight and I’ll get it woring. Without that small piece ther was a lot of gaps so it wasn’t sealing the mask correctly, so it wasn’t doing much. So I didn’t wear it for 2 days. I hope tonight that will change.