I would love to tell you about my day but I don’t know if I can, I am THAT exhausted, and this is only the FIRST of three HELL days. But buckle up, here we go!
First, I am dehydrated it seems, but no one knows why or can stop it. The simple test is pushing, like pinching a finger and it is supposed to pop back in three seconds. If it the imprint is still there 20 seconds later, you are dehydrated. Well, with one home care worker I held out my palm and said, “Hey, put your thumb print in!” She pushed her thumb into my hand and a minute later there was still her thumb print.
“I am HUMAN SILLY PUTTY!” I declared. And used the side of my hand to make an imprint of some earrings. I egged the worker to try doing a fingerprint set on the palm from my pinky down.
The worker was edging away, “That’s not normal!” she declared since my palm now still had her thumb print and earrings outlines.
“Of course it isn’t normal, this is me! This is supposed to show I am dehydrated, but let’s play with it.” And I started shaping parts of my palm into a ridge of mountain, which stood there, my own little landscape.
“Shouldn’t you be worried?” the worker asked.
“Nah,” I told her, “I have fingers that turn black, this is nothing odd compared to that!”
Anyway, I was up at 7:00 something to be at the blood clinic for 8:30 exactly because that is when the woman who works with me with our needle protocol was in. She took the three PAGES of tests and said, “I don’t know if we can do all these!”
If I could stand I would have been hopping from one foot to another and was saying, “You said we would go right in LINDA!”
See, let’s say you are scared of spiders or bees in the car with you and your doctor has ordered that you are to be lowered into a giant BOX of spiders (or bees) which will crawl all over you for several minutes as some sort of medical test. Now that doesn’t sound very fun, does it? So what if you arrived, all doped up and trying your “calm breathing” and they say, “Golly, I don’t know, why don’t you sit over there, while we add another couple dozen spiders to the box and see if they are crawling enough for this test.” Well, that doesn’t REALLY calm you down does it? That is what this woman was saying.
Anyway they put me in Room Three (the wheelchair room) and we waited and waited and Linda looked out and the tech was having to call the labs to see if they could do all these odd tests no one had heard of which were being requested. I noticed that Neuro people had me checked for HIV. I wondered if they noticed I had been tested 9 months ago, or cared? Probably not. They checked my blood thinner (aspirin for stroke) and then we waited and waited. We had given her the name of the Rheumatologist we had blackmailed our GP to see (we weren’t doing these tests until he finally months after his promise, he made the referral!). So the vials and the orders for tests were bring printed up.
“How many?” I asked Linda.
She said, “We are just going to do as many as we can, maybe 10 vials and then we will do the rest when we come back.”
“How MANY!” I said with my voice going up at the end.
My previous record was 14 vials, which took I don’t how long. It was not a record I wanted to repeat.
Linda looked down, "Well....twenty vials….in the first batch.”
I was freaking and the tech was still printing them out.
I told Linda, I have to do the down-slope, I can’t come back facing 10+. We agreed with the tech to do as many as I could and when I screamed “STOP” they would stop there and do the rest, because I had to go EAT and then come back EXACTLY two hours later and do the next batch. Welcome to MY PERSONAL HELL.
The printing finally got done and I listened to my music and they took off the EMLA and my vein was bulging and I said “yes” for Linda to grab my arm as a tourniquet. Then I started to listening to something hard beat and started screaming “Go, go, go, go, go, go!”
Well, see, this is the first 10 or 15 seconds where you are going, “Okay, I have my own personal phobia right here INSERTED into my body, but I can deal with that.” It is like being LOWERED into the box of spiders and the lid closes. And then the spiders (or bees) start crawling all over you and you think, come on, it is almost over. Only you know it isn’t over and you are THERE and the spiders all over you crawling, crawling, every inch of you. Well that is what happens at about 20 seconds in and I screamed. And I mean SCREAMED for I guess 70 seconds because even I thought I would give out but as long as the needle was in me I somehow found enough oxygen in me to keep screaming, one LONG continuous scream (I actually remember thinking if this was a note and I held it this long, I could get a record contract!). There wasn’t a question about the people in the waiting room hearing it. Linda said she wasn’t surprised if her doctor two floors up in the same building didn’t hear it.
But were they done? No. So either I had to yell "stop" and come back and do it again or I hang in there and just keep screaming. So I sucked in breaths and screamed things, anything but the word ‘stop’. Since I could FEEL the needle in me, I think I screamed, “I FEEL IT!” a few times. Then the tech says to Linda, “drop your arms.” It turns out that the last vial needed, as required BY the test to be filled simply with blood pressure, without a tourniquet. And it was taking FOREVER. What I did not know is that while there was a needle sticking out of my arm, no blood was coming out. Remember how I have problems with vascular constriction? Seems that includes the big viens too. Guess that is why I am not getting enough oxygen. In the end, Linda had to pump my arm like someone squeezing the last of the toothpaste out of the roll to get the blood (this needle was in the bend of my elbow).
Then I had to go and fill a urine sample to the top. I held the sample and said, “And this is AFTER I have fasted for all night AND went to the bathroom when I woke up?” Yup. So I am there thinking of Niagara Falls and anything else and get 4/5ths full and I think, “Good thing my autonomic failure is retention, what would they do if it was incontinence? Wring out my Depends?”
We come out and the tech has this look on her face. I have seen that face before on other people. So I said, “You have to do more don’t you?” Turns out yes, she does. Plus it seems that about when I had my needle, a car wiped out into all the cars parked next to the road where the clinic is located.
I immediately said, “That wasn’t me!”
Hey I can scream loud, but cause accidents, gosh, I hope not!
Yes, I had to go BACK up on the table and they needed another ‘freeflow’ full vial from me BEFORE I ate. I sighed and Linda got me on the table, I started to listening to "Paint it Black" and we got it done. I wouldn’t flow then either, and was just yelling “Go, go, do it, go!” for about 30 seconds while Linda had to “cheat” again. I am a little unclear about the end because Linda says I tried to look several times but my arm had blood on it (I had to wash the blood off my arm before in the bathroom after round one), so she kept me down and then I went into a Grand Mal seizure. So when I came to the tech was gone and Linda was looking down and I was talking the “Wa wa wa” talk where I am the ONLY person in the world who knows how to talk right it seems, but no one can understand me.
We were then given the container and the dixie cups to collect my urine for the next 24 hours and finally I was free. I had only slept 6 hours the night before with nightmares and this first part had taken TWO HOURS. Linda pushed me home, I ate and then peed so I could go to sleep for 50 minutes (turns out our toilet isn’t really deep enough for BIG dixie cups, I wonder which home toilets are?). So played that game. Poured into bed. Almost asleep. The phone rings. Linda leaves. I sleep 25 minutes and I am up again, putting up the hair again and wheeling off for round three.
The phone? It was my GP, he had tried Linda at work and then at home, he REALLY wanted to talk to her. Needed to change the appointment time on Thursday. Wanted to see us as soon as possible. The MRI results had come back (Linda forgot to ask what they were) but suddenly, my GP who needed months and blackmailing to get a Rheumatologist is saying that the appointment he could get was for December and that isn’t FAST enough and now we have a NEW Rheumatologist. I didn’t get it, he could care less how long it took for specialists before, and now he NEEDS a Rheumatologist now?! Then Linda tells him how I am not breathing well and I need a respirologist. No problem, he has several in mind and will recommend them right away. She tells him about the portable converter. He will do the note no problem.
I am saying, “Who was that? Because that’s not my GP!” Followed by, “Get in that wording Blue Cross needs for the oxygen converter note TODAY, before whatever he was taking on the vacation wears off!”
Turns out the Blue Cross letter is at work, Linda will fax it in tomorrow and pick up the note tomorrow afternoon. But that isn’t all. Talking to the GP she says, “We know you don’t feel comfortable prescribing pain medication, so we were thinking about a pain specialist” (This is where we thought he would balk).
Instead he says, “That sounds like a good idea, I know someone who is really good, who were you thinking of?” She opened the email we received from local readers and gave the name and he said he knew him and that guy was really good and who he was thinking of and he would set it up.
AGAIN, who IS THIS?
I said to Linda, “I don’t know what came back on that MRI but it lit a fire under him”
Actually that worried me, what could BE on a section of MRI that required the chief radiologist to come exam the MRI’s while I was IN the machine and then shoot even more sections? Not only that, the GP WANTS to talk to Cheryl about the seizures. Before, he wasn’t interested. What is ON that MRI? See in Canada, if it comes back negative, they never say anything; you might ask a meeting or two later and they go, “Oh turned out to be negative.” Not calls and three new specialists. Oh well, find out soon enough.
I was drugged and back and we tell the woman (very nice woman) that in the last two hours we have a NEW Rheumatologist and give her that name and number. She has this look like, “I kind of WANT to strangle you for all the paperwork I have to redo” but said with a pleasant voice between gritted teeth that LUCKILY none of the blood had left the lab yet.
I am back up on the bed and it turns out this blood series is to be another free flow thing and for the third time we prove that my vagovascular system is totally fucked, because you stick me, I don’t bleed. I am ZOMBIE BETH and I am coming to a town near you. (woo hoo, failed at LEAST two witch tests, and does my seizure speak count as talking in the ‘devils tongue’? I would like to say after this I went home and ‘rode my broomstick’ but I was too tired for that, even with the new batteries).
I am rewarded after the third blood stick by having to fill ANOTHER vial of pee. Linda meanwhile has to fill in an “incident report” about my seizure.
Anyway, we were done and wheeled and staggered back home.
More dixie cups in the toilet, more pee on my hand. More OCD hand washing. Finally get to bed, I have an hour and 25 minutes before the next appointment. We get into bed, almost asleep and…the phone rings! God we can’t win!
It is the lab we gave blood at. Linda and I look at each other with the eyes of people making a mutual suicide pact if we are told we have to go back there today. No, they are calling to tell us to THROW AWAY all the pee I have collected today. They have decided I need to start collecting the pee tomorrow. Wha?
We go back to bed and get to sleep a bit. And people wonder WHY I hate the tests and the lab work.
We go to my appointment at Triumph. We were to get the keyboard and the air con. We have. They haven’t reimbursed us. My “coach” M. was supposed to get me the OT recommended wheelchair (with head rest and tilt). She didn’t call anyone but emailed me almost every day telling me that I should do it. That she just needed a “money number.” I called R. at Motion Specialties and gave him M.’s number and said, she doesn’t GET what ordering wheelchairs are about (just the wheels can cost $450-$2000), please help her; I need an electric with head rest and tilt that can fit through doors (an option to add cheek control would be smart). He talked to her and said that the most basic would be $2,800 without taxes for a manual but would go up to $30,000 for an electric. She told us she had decided on a number in the middle, $4,000. I don’t think she did well in math class. She says, “if it is more than that, you need to get the number to me and I can run it past finance.” Sigh, after two months she gets what she first asked for – us to do all the work. And no real solution.
Anyway, the table for my bed…..after two months she has NOT ordered it because it is US company and she wants to send it to a US address. I give her our US address. Linda pointedly waits so she will call and order it NOW. She turns to Linda and asks her for LINDA’s credit card with “I’ll reimburse you, it is just the finance department is on the second floor.”
I said, “We just had to pay $1000 on a PRE-APPROVED mattress, so, sorry, can’t help.”
She tells the medical supplier if she can order a table and then pay for it later. Geez, sound more suspicious can you? She hangs up and says they won't do that and that she needs a street address not a PO Box. We say we will email it to her. (email it EVERY day until she orders the TABLE!)
Guess what I find out today? That M. the woman at Triumph who has not found me a job or really helped me do anything but after 9 months has authorized me to find ‘someone’ to set up the computer for $100 and “we’ll reimburse you” (still waiting on the 'reimburse' for the air conditioner lady?). So while SHE doesn’t find tech people by using this odd object called a PHONE BOOK, I am free to do her job while she collects the paycheck. Sorry, that wasn’t the good part. Guess where M. worked before she became my “Work Coach” at Triumph (you know she is the person who MADE me write out a complaint against staff because, as she told me, I made her angry)? She worked at…..BEACON Home Community Care.
Makes sense doesn’t it, work one place where you treat the clients as sub-humans while you collect a paycheck and now another organization that does the same.
I came home and slept for over 2 and a half hours. And now I am ready for my next appointment tomorrow morning, and then my GP on Thursday morning.
Thanks for hanging with me. And sorry I haven’t been commenting, but I do comment AS much as I can. I am beat, so any messages of encouragement during these three days would be GREATLY appreciated.
Oh, I also sent out 20 post cards Sunday and Monday. Now that seems like weeks ago instead of yesterday. Glad I did it then before I got all exhausted. Cheers.
Oh Neil, glad that it is over for one of us!
5 hours ago