Update on my Independent Living Program

Yesterday was a long day. My Voc Rehab Counselor is in Orlando, about a two hour ride from here. My ride was picking me up at 7:30. For me to be ready to go at 7:30, I had to wake up at 5:30. Why so early? When I get up in the morning, I'm in agonizing pain. I get out of bed and go straight to the bathroom to take my meds. I wash them down with a mouthful of water and on a regular day, I go back to bed and wait for pain relief before I start my day. However, since I had to get ready to leave the house, going back to bed wasn't an option yesterday morning. I couldn't chance going back to sleep. I sat down at the computer for an hour and a half, opened up a diet coke and waited for pain relief. Once my joints started to feel some relief, I got up and got dressed. I thought briefly about showering but Terri was asleep and I didn't want to wake her up. I need her help to shower. Thank goodness for baby wipes. Perfect for those quick clean ups.

My ride was here on time and at 7:30 we headed out to Orlando. I used to love to go on road trips. Now I hate them. Rather, now I hate the pain I'm in from riding in the car. I can't get comfortable in the car. What's worse is I can't ride in the back seat to stretch out because I get car sick. So I suffer through sitting in the front without elevating my legs. By the time I reach my destination, my legs are swollen and painful. A normal two hour ride isn't two hours anymore. I have to stop multiple times to stretch my legs. Oh yeah, I have to pee, too. I have cotton mouth from all the meds I take so I pee. A lot.

We got to the Voc Rehab office in Orlando just past 10 o'clock. Not too bad considering all the stops we made. I signed in and the clerk behind the counter was reading a novel. He never even looked up at me. That's what we pay our civil servants to do. Sit behind a counter, read novels and ignore Veterans. Of course I had to interrupt him. I wouldn't be me if I didn't. I asked him where my counselor was. He responded by asking me if I had an appointment. I told him I did and he wanted to know what time my appointment was. I told him I had driven in from Spring Hill and the arrangement I had with Hollie was that my appointment was whatever time I arrived. He told me to take a seat and that he'd try to locate her, but of course I stood there long enough to be sure he didn't stick his nose back in his novel.

Almost 30 minutes went by. I hobbled back up to the clerk & he was back with his nose in his book. I asked him if he'd found Hollie. That's when I saw her at the copy machine. She told me to hang on and she'd be right with me.

Finally, we went back to Hollie's office. At last I was going to get some answers! I like Hollie. She's been an awesome counselor so far. She's a good advocate for me. She had all my recent medical records pulled off the computer and we talked about those. We talked about my "diluted urine" and she's as pissed off about that as I am (Pun not intended). She told me the same thing that everyone else has said. She told me to demand a witness when I piss in the bottle. She told me to use the voice recorder when I request a test monitor. She's not an MD but she looked at the lab results. She said that all the results fall within normal limits so she doesn't see what the big deal is about the diluted urine.

I told her that my psychologist wants me to start making jewelry because I had mentioned to the psychologist that I used to make jewelry in high school. The stuff the psychologist wants me to do is very different from what I did back as a teen. When I made jewelry, I worked with silver and semi-precious stones. I cut all my own stones and designed my own jewelry. I worked with sheets of silver and soldered my own stuff. It was simple but it was beautiful. The stuff my psychologist is talking about is beading and hell, I don't know. But it's nothing that I know how to do & it's nothing I'm interested in learning. If I can get back into what I used to do, perhaps I can get the VA to build me a shop and provide me with all the tools I need to get back into it under the ILP.

For now though, we talked about my basic needs under the Independent Living Program. Because my memory sucks so bad, I tried to keep notes, but we were talking so fast I couldn't keep up. Hollie was taking extensive notes. When we finished talking, I asked her for a copy of her notes. Guess what she told me. Her notes were a part of my permanent record and if I wanted a copy I had to go to Release of Information to request a copy of them. I was flabbergasted. So, I guess my next project is to send a request to the VA and ask for a complete copy of my Voc Rehab records. I'd like to get a good look at them.

I thought when I went yesterday that I was going to sign my plan. That was the impression I was given. Of course, when dealing with the Government, we all know how that goes. Mostly what we did was TALK about my plan and what I wanted from it. I left there with "homework." Some of the things that are going into my plan that I'm hoping to get are a new bed, a lift chair, a recumbent stationary bicycle, a laptop coputer, a mobility scooter, and a lift for my SUV for the scooter. I've also asked for some ergonomic furniture. For the computer, I asked for some genealogy software (a family project I'm working on), voice activated software, Quickbooks, and Microsoft Office. They are going to send a Rehab Engineer to my house to check out my bathroom. I need a new commode, shower rails and the shower floor needs to be raised. They also need to get rid of the sliding glass doors. I have fallen in the shower multiple times and I just know that my luck is going to run out. One of these times I'm going to fall through those sliding glass doors. Will I get service connected when it slices my head clean off my neck? Won't that be one helluva battle.

My "homework" is pretty simple. I get to research lift chairs and pick out the one I want. I have to research voice activated software and pick out the one I want. The best one is I get to go bed shopping. Hollie told me to go out to the bed stores and just try out beds until I find one that I like. I know I can do that.

Oh! I forgot to tell you something else I asked for! I love to kayak. I have one that someone gave to me. It's a sit on top. It takes three people to put me in it. No shit. Three people. Terri ties a tow rope on it, attaches it to her kayak and then she does all the work. I can't paddle because my shoulders are too messed up. So, I asked for a trolling motor. The reasoning I gave is that it's a social outlet. It gets me out of the house so that I can spend time with friends. It's the only really "out there" request that I asked for.

The next step is Hollie has to write up everything we discussed yesterday and put it into my plan. Once that is completed she will send it to me to sign. After I sign it, she'll submit it for approval. Until then .... I wait. It seems I'm always waiting.

In the mean time, I've started my dear friend David down this path. Whatever path I embark on, as soon as I figure out how it works, I send him down the same path. He went to see his service officer today to inquire about enrolling in Voc Rehab. His service officer doesn't want him to enroll in Voc Rehab. It makes me wonder if his service officer knows about the Independent Living Program. My service officers insisted I enroll in Voc Rehab when I applied for 100% IU as a show of good faith. As I stated before I was reluctant to do it, but I'm glad that I did. This is the best thing that's ever happened to me. Service Officers don't follow the same protocol. Maybe they should.

Something else to ponder. I found out last night that I may have been exposed to Agent Orange while I was in basic training at Ft McClellan, Alabama in 1976. Like I don't already have enough to worry about?

Until the next time ....

Paper Waste. VA Tree Killers. More random thoughts.

Today I received 6 postcards from the VA Hospital. Count them. Six. They were reminder postcards for the appointments that I have coming up over the next two weeks. One of the postcards was for a new appointment. I got a letter in the mail yesterday regarding this "new appointment" in the PMR General Clinic. It took two days of phone calls to figure out what that appointment was for.

First of all, why does the VA Hospital feel the need to send you no less than three reminders for each appointment? I have stacks and stacks of reminders letters and postcards piled on my desk. Each time I get one, I open it up and compare it to what's written in my planner. The VA likes surprises. They will cancel your appointment and reschedule it. Then you'll get several postcards telling you your appointment has been canceled. You'll get several postcards and maybe a letter or two with instructions for the new appointment. Half the time they use such obscure abbreviations that I have to call the VA Hospital to find out what clinic the appointment is in.

Let's not forget those automated phone calls! Those come three days before your appointment. You know the calls. That automated voice reminding you that "The Patient born on December 18th, 1958 has two appointments on" ... But they don't tell you what the appointments are for. Wouldn't that be the time to tell you what clinic you are scheduled to go to in case you didn't get the mound of paperwork they sent you?

There must be an easier, more efficient way to do things. The VA is spending shitloads of money on paper reminders and automated systems to remind us multiple times of our appointments. Is it working? What is the no show rate? Where are the statistics? Is it overkill? Can that money be better spent somewhere else in the hospital? Perhaps they can use it to hire more doctors and reduce the waiting times for us. I know I'd love to cut my waiting time back.

Speaking of waiting times...

You go the the VA Hospital and you check in 20 minutes in advance like they tell you to do. You're there on time. The nurse calls you in for triage. No patient privacy there. You share a room with another Veteran while the nurse asks you personal questions about your health, gets your weight, blood pressure, temperature. Then you go back to the waiting room. So aptly named. The sign says, "If you have not been seen 20 minutes past your appointment time, please tell the clerk at the desk." You learn that it's not worth your time to tell the clerk. The clerk will tell you "doctor is behind in appointments today." I've waited as long as two hours to be seen. By the end of that two hours, I'm in so much pain from sitting, I can hardly move.

I get up and walk back to the doctors office when my name is finally called. The doctor tells me what I've heard before. "We don't know what is causing your pain. Here is a script for more pain meds. We're going to treat you symptomatically. I don't want to to be treated symptomatically. I want answers.

My PCP physician sent me back to the pain clinic because my monthly drug tests are coming back "abnormal." My urine is full of opiates as it should be. The Ph is normal. But my urine is "diluted." It has been for the last 3 months. That would suggest that I'm pouring water into my urine before I turn it in for the drug screen. I have offered to let them monitor me when I piss into the bottle. I have told them to take a sterile sample from me. Not one doctor has thought to look into the fact that something else might be going on. I have diluted urine, no appetite and I've lost almost 40 pounds in the last 3 or 4 months. Isn't it time to start looking into a medical reason for diluted urine? Isn't it time to stop pointing fingers and stop accusing me of ... of what? I have the appropriate amount of opiates in my system, my ph is normal. It stands to reason there is an underlying medical condition going on. I drink a ton of water every day. I must drink 8 or so bottles of water, if not more. Of course my urine is going to be diluted. Stop the finger pointing, Doctor, and get to the real reason for the diluted urine.

Until the next time.