Linda drags Beth to ER: Beth not well, but released anyway.

I don’t like going to emergency rooms. This is because I am an individual and most emergency rooms view people as being part of a ‘parameter’ – meaning, ‘Will they live? Then get them out of here.” Indeed, the doctor who looked at me told me that in THIS case it was acceptable I came into the ER, and could in the future, assuming I could not get to a family doctor.

The reason I went to the ER (or was taken), was because I could not stay awake, after 9 hours sleep, I quickly was fighting sleeping, before falling asleep and would not wake up. Linda woke me after over two and a half hours and several tries but at the time I could not move, or even speak to start. She tested my BP and I was 90/40 and just over half an hour later 100/53, and that was AFTER she had moved me to a seated position. Over the next hour my BP remained as low. So she packed everything up and put me in the van and we drove to ‘the other hospital’ the one which is not ‘one of Canada’s worst’ according to the doctor who works there. We waited, with me slumped face down, and my lips with a bluish tinge (according to Linda), for 30+ minutes to see the admiting person in order to be registered to wait in the waiting room. In the waiting room: People were there with babies who had fallen, or 2 year olds who had a sore shoulder. After about 2 hours, I was admitted into the ER and given a bed. The bed was fixed and unlike other facilities did not go up and down so like, people in wheelchairs can transfer over. The person taking the admitting information had told us she would be back to get our conditions and medications, but she did not. Nor at any time during the entire visit did anyone look at the medical alert bracelet. This makes the cost of taking the ambulance almost worth it as things like ‘can't sweat’ or ‘trypanophobia’ (needle phobia) or ‘oxygen therapy’ or ‘multiple system atrophy’ actually make it onto the chart. I mention that because these are the four things on my medical alert bracelet and these are the four things in which the ER personnel actively endangered my health.

I got on the bed; and a woman came to take my blood. She was an angry woman who said things like, “If she isn’t ready then I’m not taking any blood!” or “If her vein isn’t right, I’m not even trying.” She either had not heard of trypanophobia or did not want to hear about it as she said, “Fine!” in a "I'm fed up" tone and then turned around and left. The Emla was put on in the waiting room so the tech could take the blood as soon as I entered the ER, but that tech did not return for over another two hours.

I explained to the head nurse that there is a medical protocol for trypanophobia as it kills, and has killed 23 people actively (by causing cardiac arrests), many more are killed passively by lack of treatment like mothers who won't get ceasarians, or the diabetics who won't take the insulin. Those 23 were noted in just one journal article. The response was, “Yes (23 died), but out of how many?” This seemed really odd to me. My understanding of ‘Health and Safety’ is that if you do something like find out that people have Swine Flu, instead of asking, “Yes, but how many are dead?” And if the number is below 50 for your country you do nothing, you institute a protocol, like asking people if they have returned from Mexico recently (which is up at every doctor's office in the area). And if you kill someone in the ER, or kill many people because of an action, they put in protocols to stop you killing people. Except in this hospital it seems, where, as open as a profit-conscious HMO, the question isn’t if people will die, but how many will die, and "what percentage?” Well, I don’t know, but since Trypanophobia (Needle phobia) has four types and most people with it won’t go to the hospital and only the type 1 tends to die DIRECTLY from Syncope which lowers the heart rate enough to go into cardiac arrest. And when the person who tells you they HAVE Trypanophobia is coming in because they have a low pulse and a low blood pressure, that seems a life endangering response (as the most common response to trypanophobia is a dramatic drop in blood pressure and heart rate). But to answer the question, considering how few go into the hospital and how rare the condition is, and how this affects one type of four, maybe .5% annually die, maybe 5% annually die. I don't know. Is that an acceptable loss?

I will state that over at Jubilee, the other hospital we chose NOT to go to, they have always treated my trypanophobia well, and put on emla, and a patch (we had to use our own emla and patch at this hospital) and followed our protocol exactly. Not like this hospital where there were threats, offers of being held down, or people telling me to wipe off the Emla (a topical anesthetic) as they are coming over only to NOT come over for over an hour (making the deadening process useless). It was not a good experience.

For some reason, even though my fingertips are purple, and the last two fingers of one hand is black along with part of my palm, the oxygen reading on the monitor continues to show a perfect 100 percent. We find out just before we leave that to stop my Raynaud’s giving a non-reading or if someone has nail polish, or any other reason, the oxygen is set to 100% default. If it can’t pick up your oxygen, and your fingers are black, it will read 100% oxygen. This is a GREAT idea for not having to constantly check people due to alarms (my oxygen alarm was turned off anyway as in talking to a nurse I managed to animate enough blood for it to read 80%, and the alarm annoyed her so she turned it off, and then didn't turn it back on). But the whole 100% default is not a great idea if the patient needs oxygen therapy to get better. Or as the doctor said, seeing me six hours later, “Your oxygen is fine.” And then mentioned I should ‘consider’ the possibility of anxiety or other mental disorder and the power they have over our minds.

As time went by, because no one was checking my body core, and I can't feel my own temp, it turned out I was getting hotter and hotter. This started a series of seizures which excited the ER, SOMETHING DRAMATIC could be done, like ativan or an IV. However, though we had told everyone that came by or in that I could not sweat, no one took it seriously. We were to find out that when the med student looked at my chart and asked, “So when did you first get diagnosed with MS?” they thought I was ‘heat intolerant’. No! ‘No sweat' means 'NO SWEAT’ it means 'heat stoke' (except it turns out that an angry and incompetant blood tech (she went right through the vein, with a butterfly!) can make me sweat slightly in the underarms, then it stops - so absolute terror still produces a small result).

The problem was, I figured out I was hot but post seizure, I couldn’t speak, then when I could speak, I could only speak German. Even the nurses’ and Linda’s superhot hands were cool to my head but no one figured out - hmmmm, if my hands feel cold on her, how hot IS she? Superhot blood was going to my brain and was going to keep giving me seizures, plus my resting heartrate of 73 (which with MSA is hardly enough for me to stay awake) was now 92, then 96, then 101 and holding above 100 – for lying perfectly still, almost asleep. I told Linda in german I was hot. So Linda used our ER break packs to cool my head and then asked the nurses for packs, and still they didn’t get it. We decided it would be best for my health to get out of there and that no, in a heat wave going to the hospital won’t be a last resort. So, I have a resting heart rate of over 100 (my theory is that my body was trying to get rid of heat by pumping it out to the extremities and back to the core (making the core where the heat is hot as it is working hard. The heart continues pushing the blood to the surface, which due to the fact I wasn’t sweating was simply making me hotter, and my heart rate increase). Linda said that I looked WORSE now, with my red face and nose and ears than I did when I had the blue tinged lips. The doctor, when he arrived saw no problem with a resting heart rate above 100…..and then suggested thinking about mental health services for things like panic attacks and anxiety disorders as ‘the mind can have a great impact on the body’. He included a pamphlet for me on dealing with anxiety disorders and panic attacks when I left. So it turns out that your treatment AFTER you have been actually BEEN DIAGNOSED with a named disease still means you get treated like you are the problems if the doctors don't know the disease. And thus it was all in my head, instead of, "Uh oh, rare disease, lets look it up and see what the potential hazards are?" - nope a lot easier to go with 'panic attack'. Now, as to the over 100 beats a minute heart-rate: I would like to inject the ER doctor with adrenaline 24/7 for a while to test this theory: that having a heart rate while resting which is the same as what you have while running a 5K in training (as I did 5 years ago, actually about 94 for running), that having that occur all the time is probably very fatiguing. That's my theory - not, "The books say people can have it" but could YOU Dr. ER, have it and keep your job? But then, individual patients are not the vision of the ER, just, “Can it live? Have other humans lived like that?” and "is the problem immediate to be dealt with THIS minuste?" not “Is that good short or long term?" Or "can they hold a career like that?”

My BP spiked when they took the blood, and as I found out this morning as I got a nose bleed (174/143). But then, I don’t go to ER’s for nose bleeds. Or blood out of the mouth or ears. We got the blood tests back and yes, I still have anemia, the same amount that Jubilee circled and wrote, “GP deal with immediately” – turns out that while I am below the Canadian level (which is far lower than the minimum UN levels), I am not low enough for a ER transfusion, which is below 70.

However, all four of my blood oxygen carrying aspects were also below the limits and Low – low red blood cells per volume, low amount of oxygen carried by each cell, hemoglobin, hemocrit, all low. The doctor said that they weren’t DRAMATICALLY low, like I wasn’t bleeding inside, and said "look my white blood cells were within the normal range." I sort of looked at him funny and said, “Good, because if they were elevated or eliminated, that would be a major infection and that would be ANOTHER problem.” He said that my anemia and RBC and other anemia related tests below the limit was not so dramatic that I would not notice a difference from yesterday (hence not the reason I came in), and then asked me: What is it you want to know? I said, “Well, those results might not make the difference that brought me here but I AM fatigued and have been for a year, so how CAN we treat it since my iron and my B-12 are normal? Idiopathic Anemia?” He said these things were best investigated though the GP and specialists. (insert hollow laughter) So no luck there, and no long term change in the fatigue factor, or as I pointed out to him, it is best to eliminate a side issue to see clearly the main disease. He said, “A lot of your tests came back normal, which is good, since you know, normal is good and something bad isn’t good.” I told him when I come to the ER, I want something dramatically bad (I can get crappy normal at home, why go to the ER for it). When you only get 4-6 seconds of a heart monitor strip the doctor sees, you WANT something dramatic to happen on it!

After all the 'normal' and 'Good' The ER doctor failed to mention that about 35-40% of ALL the tests including those for kidney and liver were ‘failure’, or lower or higher than allowed perimeters without treatment – that I had about 15 items that ‘required treatment’ according to the standards and perimeters set by BC medical and Canadian Medical Authority.

Linda noticed and questioned about a liver and another test failure, if they were likely due to hypothyroidism (she does her reading) and he admitted that he didn’t understand why I wasn’t on synthyoid as is was cheap and an easy solution. He did not however offer synthyoid (we asked!) as these are best done by your GP (or as he added, “Or in your case, a walk in clinic.”). Strangely when offering the results to take to the clinic he adds a pamphlet on mental health and dealing with anxiety disorders covering the top of a medical readout where 30-40% of all the tests are in the ‘treatment required’ zone. So 30-40% medical test failures but.....I given pamphlet on not having panic attacks.

So, since they were not regulating my heat, or my oxygen, or my heart rate (the head nurse did note and state that it was odd that after being giving Ativan which should LOWER my heart rate, given to me during seizures, mine instead went UP). The German speaking dropped out after an hour or so. Just in time to wait a half hour, then talk to the doctor and to leave.

I find it problematic as we went to the ER, but ended up using OUR emergency supplies to keep me from having more seizures - IN an ER. And I was without body temp, oxygen or heart rate monitoring (even after multiple seizures and a change in heart rate of 30%), they were and had endangered my health. After six hours without an offer of water or anything the doctor suggests I was lethargic due to being dehydrated and wants me, at 3:00 am to stick out my tongue. I do, he hmmmmm’s and that is that.

So, believing they never really understood my disease (or even the name I think since I don’t HAVE MS), I wheeled over and asked the doctor, ‘Since my disease has two main life threatening issues due to autonomic failure: first is stopping entirely of the heart and second is stopping breathing’ When WOULD I come to ER?"

He said that is a good question, and that if I came like I came today frequently then they would know it was a mental issue, but to do it infrequently due to a change, like I had today was okay. But for a stopped heart or stopped breathing (insert his laugh) ‘we’ve dealt with far worse than that, and that is not an issue.’

Wha? What is worse that a stopped heart and lungs due to autonomic failure? No head? And they fixed that? Also, if my heart stops in my home, how can he ‘deal’ with that if I have my ER experience I had today? How, when he sees me six hours later is he going to start by heart? If he can revive people after six hours of heart failure (or no breathing) I would think that either a) he is creating zombies or b) there is many, many cities which would like someone who can revive someone to normal after they are legally dead for six hours.

He suggested that I try some ‘alternative medicine’. I asked if that meant he thought my black bile was too high and my yellow bile too low, my phlem unbalanced? He said he had other people to take care of (this was irony as watching the monitoring board, we were the last to go!) and didn’t have time to talk about this.

“No 17th century alternative medicine?”

He turned away.

Odd. It was now 3:30 am and after being told that it was all in my head, holding test results saying “This person should be treated” including some that were circled with notes beside them. I had a pamplet on anxiety disorders and Linda now had the knowledge that if I stopped breathing, she could load me up, drive me there, wait 30 minutes to be admitted into the waiting room, then another couple hours to get into the ER and he would revive me, same for my heart. Yet, she did not seem comforted.

I went home, slept, got up, blew my nose, filling the Kleenex with blood, cleaned out that nostril and started another regular day. Linda and I decided, the Jubilee was faster, better and the doctors had actually heard of my disease instead of doing the ‘I’ll try to blind you with test results you haven't heard of....’ technique – wow, the ER doctor really did not like it when even when he went, “Look your kidney is fine, only the XXX is over the limits” and Linda said, “But isn’t THAT and indicator of hypothyroidism?” Linda gets a sort of ‘you are supposed to be awed and shut up’ stare before he says, “Well yes, it can be one of the main reasons.” And suddenly that was the last result from my blood tests he wanted to talk about.

So while no hope on the anemia front, I could get synthoid once the antibody tests come back in two days. So here is hoping (I’m hoping for auto-immune diseases, how sad is that?). But as for THAT ER, I rate it a 2 out of 10. For common injuries that visably bleed, it is okay. For me and others with rare diseases, the doctors and staff do not accomodate the disease or monitor them in any way (basic medicine) - which means you are in the Emergency Room of the Hospital, monitoring and trying to get help dealing with the same issues you deal with at home, WHILE you wait for them to figure out the BIG issue that brought you in that day. That ER and staff endangered my health, did not monitor any of the three things which were the highest risk to autonomic failure and then sort of blamed me with the ‘it could be conversion, it could be anxiety, the mind has a powerful affect on the body.' Gee, and so does OXYGEN, the kind that I can’t convert properly, the kind that I have lower blood cells to carry and they carry it poorly.

Does the ER thinking I HAVE MS now mean I can actually use the MS society clinic, unlike before when I was told “Money raised for MS is for patients with diagnosed MS only.”?

Human Silly Putty, the mystery MRI and one hell day.

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”

She agreed.

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!