Helpful Things

I have a lot of things that help me. This is just a few of them.

I wear an insulin pump because I have diabetes. My pump is purple. I wear it all the time - only take it off to shower or change infusion sets. It is connected to my body with a really thin plastic tube, and a tiny needle holds it just under my skin. Once it is inserted, I do not feel the needle, unless I have gone longer without changing it than I should. And 99 percent of the time, I don't feel it when it is inserted. Once in a while I will hit a painful spot, but I just take it out and reposition it.

The pump acts similar to a pancreas. It gives me tiny doses of insulin around the clock automatically, and when I eat, I use it to take insulin to cover the food. Insulin is a hormone that your body needs to convert food into energy. Your body turns food into glucose, but without insulin, the glucose just builds up until the person gets very sick. Without insulin, a person will die. There is no way around that. You either have to make your own, or take it from shots or a pump.

There are insulin pump infusion sets that only use a needle to start the catheter under your skin, then it is removed. I tried those at first, but the kind I use now works much better for me. Everyone has a preference for which kind of set they use, and everyone uses a different amount of insulin.

Insulin pumps from Medtronic are about the size of an old fashioned pager. There are other companies, but I have never used them.

I test my blood sugar with a small device that wirelessly sends the result to my pump. It uses test strips, which are crazy expensive, and a lancing device (also lovingly called a "pricker.") It hurts once in a while, but there are depth settings on the pricker.

You are supposed to change the lancet each time you test. This could be up to 10 times a day. Honestly though I don't know anyone who actually does that. I change mine when they start to hurt, which could be after months of use. I am trying to be better, and at least change it when I open a new box of test strips.

This is what it looks like. You can also see the blue pricker and a whole pile of used test strips. Everyone has a different system but used test strips seem to multiply like rabbits. They get everywhere. People with diabetes joke that we could never commit a crime because there would always be DNA evidence around, in the form of used test strips! So i just put the used ones back into the pink pouch I carry them in, and throw them all away when there gets to be a lot accumulated. I also keep a tube of glucose chewables in there (for emergency low blood sugars) and some lip balm.

I also use a machine at night because I stop breathing when I sleep. It is called a CPAP machine. CPAP stands for Continuous Positive Airway Pressure. It essentially blows air at a certain pressure to keep your Airway open so you keep breathing. I use a mask that covers both my nose and mouth, but a lot of people just use the nasal one. There are many brands and styles of masks.

So I look like a fighter pilot when I sleep and sound like Darth Vader, but I can actually get good sleep. Before CPAP, I stopped breathing all night long, and would jerk myself awake. I never got good, REM, sleep.

When I am at home, just going from one room to another, I can walk OK. But if I am out of the house, I use a walker or a wheelchair. The walker is good for times I can walk a little, then sit and rest my back every few minutes. My walker is red and it has a seat. It had a basket at one time but that has long been lost. I have spinal stenosis and degenerative disc disease, so I get extreme pain in my back when I walk. At big stores like Walmart, I use a scooter if they have any available. If they are all being used, I have to wait.

I don't have an actual picture of my walker or wheelchair because they are in the car. But this walker is almost identical to mine (sans basket), and my wheelchair is just a basic light weight transfer wheelchair.

And then lastly, here is a picture of my cat, Rajah, sleeping. No reason for this picture except I think it is funny. I can't imagine how this position could possibly be comfortable.

So that is that. There are more things I use to help myself, but this is it for now. Technology is good.

Bird is the Word

I am really tired, and nothing write-worthy has happened. So here are some cute cockatiel images I found online. (I have seven of these silly birds!) Mine are also terrified of corn on the cob, but warm corn kernels are delicious.

Clean With No Debris

I swore my mom and my aide to secrecy, but thinking about it later, this is too funny not to share. Don't judge me. We all do what we have to do to get by.

I have very long hair. It takes a long time to wash. I also have mobility problems and get fatigued very easily. I use a shower chair, but I still have to rest after taking a shower before I can do anything else.

I saw a video on YouTube recently. A female astronaut was showing how she washed her hair in space. She wet her hair. (She said it wasn't necessary, but she got better results that way.) Then she used some kind of liquid or foam (I can't remember exactly,) to lather and massage into her hair. No rinsing needed. She just toweled it dry.

I have been looking for this stuff for months. All I can find is the powdery spray. I don't like that stuff. My hair feels dirtier after I use it. Plus the main ingredient being butane, well, not so good.

So my mom gave me a bottle of foamy shampoo stuff. This is the ingredient list:

Looks decent enough, right? No weird chemicals, everything natural.

I decided, what the heck. So I used it. And it was okay. Way better than the spray powdery stuff. My hair wasn't as clean as after a real shampoo, but it was good.

So I know you are all wondering what this great product was. Remember, no judging.

Dog shampoo!

Seriously, no rinse dog shampoo.

Here is the full back label information.

Now my coat is shiny and free of debris.

Do I get a treat?

Song For Today

Pride, U2


Early morning, April four
Shot rings out in the Memphis sky
Free at last, they took your life
They could not take your pride

Some Days Just Suck

There are days it just gets to me. Being stuck in the apartment all the time, only going out to doctor appointments and occasionally getting to go to Walmart. I have no life. All of my friends are on the internet. I can count on one finger the number of people I ever actually see in person that aren't 1) my mom, who lives with me, or 2) medical related.

I don't really like watching TV. I like Jeopardy, and sometimes documentaries. I read a lot. My brain is turning to mush. It is hard not feeling depressed when you are so isolated and alone.

I am on what is called a Medicaid Waiver program. The program was designed for people with a lot of medical needs to be able to live in a place of their choice, as opposed to being forced to live in a nursing home. Good plan in theory, but has a lot of problems in reality.

I have several medical conditions that I live with. Most stem from having Lupus, in one way or another. I am an autoimmune overloaded mess. My body is attacking its own self. I am almost always in pain. I have seizures frequently, despite being on anticonvulsant drugs. (Seizures also prevent me from driving. Not that I could afford my own car, but still.)

I became completely disabled in November 2002. I was taking a drug called Depakote for seizures. It made me very sick with pancreatitis. While I was in the ICU, actually the very next day, I was put into a medically induced coma and intubated. I developed ARDS, which is really serious and has a 40-50 percent fatality rate, despite nobody ever having heard of it. Jim Henson died of ARDS. Rue McClanahan (of Golden Girls fame) and George Michael both are ARDS survivors.

While I was in the induced coma, at some unknown point I did not get enough oxygen. For a while, I was completely unresponsive, even to pain, and was not expected to survive. Obviously I did survive, but the hypoxia did a lot of damage. This is what originally qualified me for the Medicaid TBI Waiver. (Even though I had a hypoxic brain injury, not from trauma.)

So I have Medicaid, and Medicare, and Social Security, and food stamps, blah blah blah. I also have HUD, which means I pay roughly 30 percent of my income for rent and the rest is subsidized. That is IF you can find a landlord willing to accept it, and IF you can find an apartment in the designated areas with rent below "fair market" value. Basically, a crappy apartment in a crappy neighborhood.

My apartment is totally not accessible. But that is for another day.

So, back to Waiver. NY pays for an aide to help me. Waiver rules say he or she is allowed to drive me places. Waiver States that disabled people should be able to go places besides doctors offices. They give examples of visiting friends, going to the movies, going shopping, etc. Basically, having a social life of some kind.

But none of the home health agencies that provide services to Waiver participants allow their employees to drive clients in their own cars. If I had a car, they could drive it. But then, if I had a car, I probably wouldn't be disabled and even need someone to drive in the first place.

Health aides are allowed to do errands for me. But I can't go.

There is what is called Waiver Transportation. I have to call somebody official three business days ahead of time to request a taxi. Medicaid does pay for it and my aide can go with me. But it is impossible for me to know ahead of time how I am going to feel. Seizure day? Bad pain day? Nope can't go out. And they don't like scheduling and canceling at the last minute. So, I don't go.

This is different from medical transportation.  That is also a taxi, and 3 days ahead, but funded differently, and scheduled from a different place.

You also can go only one place with Waiver transportation. You can't run errands. Can't go to Rite Aid to pick up meds, then the bank, then Walmart, for example. I never know when a good day will happen, so I need to take advantage when it does.

So, I sit at home. I read ebooks. I read about other people's lives on Facebook. Sometimes I watch TV, but after an hour or so I can't stand it anymore. I used to knit.

Before I got sick, I knitted and even designed my own patterns. My brain can't do that anymore, but I could still knit simple things. Until I got DeQuervains tendonitis and had to quit. I want to start again, but could only do 5 or 10 minutes to prevent re-injuring my hand.

This is my life. It sucks. I am bored, frustrated beyond belief. Can't do anything without help, can't get the help I really need. I know people don't purposely post things to be hurtful, but when they post pictures of all the places they travel, all the restaurants they visit, it just hurts. It's hard not to take it personally when relatives especially brag about their wonderful lives and adventures. This week I get to go to a dialysis class (because my kidneys are failing.) Woo hoo great fun.

Waiver is supposed to keep me from being institutionalized, but how is this any better? Before coma, I worked at an ICF level group home. Those residents got new clothes every year, a vacation every year, and got to do tons of recreational activities.

I had a big seizure today, then slept for 8 hours. I am still tired. I can't figure out how to proof read this before posting it, so here it is.

So, what do you do?

Today, on  Facebook group page, someone asked, how do you answer that question when you are disabled. I have been disabled since 2002, and I still have no clue. When you meet a new person, the first thing they want to know is your name. Then they ask the question.

So, what do you do?

It seems that in our culture, your value as a person is tied to your job. Doctor? Lawyer? NASA engineer? Big important job equals more value. Cashier? Burger flipper? Pizza delivery guy? Less value. Disabled with no job? No value.

Answering the question with the word "disabled," is almost always followed with the Look. You can see it in their face and watch the wheels in their brain turn around.

"You don't work? Must be nice to just sit around all day."

Well, actually it isn't, and I don't. Between multiple doctors visits each week, physical therapy, and doing household things with my home aide, I really would rather be working.

I don't like having the identity of the sick person. Or the disabled person. Or the person who uses the motorized cart at Walmart because she is fat and lazy. Or the person using a food stamp card because they refuse to work.

How else do I answer the question?

I read a lot? I have birds? I like to cook? I used to own a child care center?

None of it really seems to matter to people as much as "what is your job?"

It's frustrating.