Tuesday, February 19, 2008

Some days are Shit Days: Tests and Interviews

Let’s call this “Failure and Exhaustion” day. I was rather proud of myself this morning in that though I had a bad night, I had only called the care worker at 6:00 a.m. for painkillers. I told her I woke from a WWII dream where I escaped from a women’s prison to blow up a train: sort of Bad Girls meets The Guns of Navarone. Well, according to the care worker, I called her twice for painkillers, once at 6:00 am and once at 3:00 am. Needless to say after diminished sleep, finding out that I apparently called my worker and took opiates and remember nothing of it is rather disturbing (She says I told her about a dream that time too).

I was up early to go to the hospital for a chest X-ray and a Ventilation/perfusion scan. I had been demoted back down to “diagnostic” where people run tests until you are exhausted and WANT to die. This is punctuated by doctors/specialist visits where you are told either bad news or bad news: a) You have something wrong with you but of course there is nothing they can do about it OR b) This test indicates you need a bunch MORE tests. Since I have showed up “abnormal” on all the recent tests, I am somewhat reluctant to do MORE tests. We had the “Your thyroid is dying – bummer” test and the “You have secondary Reynauds” but there is nothing we can do test and then the “Your nerves aren’t working and are abnormal/abnormal and there is nothing we can do….but we want to do more tests.”

Anyway, the Ventilation portion of this morning’s lung test involves this little green canister and they put in NUCLEAR RADIOACTIVE material to make a radioactive mist which you have to suck down for five minutes. They clamp your nose shut and you have to keep your mouth sealed so the radioactive stuff doesn’t escape. Apparently the rest of the non radioactive air is oxygen rich, I couldn’t say because it was like trying to breathe through Jello. The effort for my ribs and diaphragm to pull in each breath was extreme. Indeed, about 30-60 seconds after we started Linda had to hold me upright because I was fading fast. When they said, “Um….her eyes have rolled to the back of her head.” Linda said, “Can you get her a cloth, she’s just warm.” Whatever. I couldn’t sit upright, I lost use of my left arm and couldn’t see but I kept thinking, “Keep the mouthpiece clamped in teeth” (mostly so I wouldn’t have to do it again). Eventually, I couldn’t even hold on with my right arm but I made the five minutes and when I could breath air again, it was like coming up from the bottom of deep water. Then the tech picked up the canister, and holding it as far away from him as possible took it out of sight (to the lead lined bunker, I am sure).

They put me on this narrow bed in order to take Gamma pictures of my lungs. Well first, when I was laid flat, I started making funny noises because I couldn’t breathe (but the techs didn't realize I was asphyxiating, Linda had to say, "she can't breathe."). They so they put some cushions under to incline my upper body so I could breathe (sure you deal with lung problems guys?). Then I was supposed to hold my arms in odd positions over my head for “only three minutes for each pictures.” Well, for the X-ray, they had a bar for me to hang onto to eliminate my weaving with my weak trunk support (I was also the youngest person at that particular X-ray station and the tech told me the average age for patients was 70’s). With the ventilation pictures it was simply impossible, particularly with my weaker right arm, so I told them, “Tie them together.”

The male tech just stared at me kind of confused and scared. I rasped out again, “Put my arms how you want them and TIE THEM to each other, I can’t hold them in position.”

He stammered, “Um…we don’t actually have the equipment to do that here.” What, no one has rope anymore. Actually the male tech rallied and said, "No, we just don't keep handcuffs here." So one of the techs helped me by holding on of the arms while I held a loop on the machine with my other arm.

Here came the time for the injection of radiation into my body. We had put on the EMLA (topical anesthetic), Linda was there and they would do our protocol which is; I get calm, I say “okay”; they clean off emla; they tap me when they are ready; I get as calm and as ready as I can then I say YES (well, actually I scream YES and then don’t stop screaming until the needle is out). Only this time I looked up at Linda and said, “We forgot something.” We forgot to take the sedatives. Fuck!

Linda convinced me that this was a VERY short shot and that I could do it and then it would be done. The male tech tried to grab my arm but I kept breaking free (if you try to hold down my arm I will strain until I either break free or rip my muscles – and it apparently makes the vein disappear) and he gave up on that. So I tried to calm down and after following the protocol I eventually started screaming YES, YES, YES, YES, AAAAAAAHHHHHHHHHHH!HH!!!

The tech said it was different to hear people scream “Yes” than “No!” Anyway, my first needle without sedation. I apologized and said I hoped the two people waiting were still in the waiting room later. They said, no worry, they inherited the room from the cancer people and it was soundproof. Linda said, “Hey, now we don’t have to worry about sedation effect with Monday Magazine.”

Monday Magazine? They decided almost 2 weeks AFTER I was trapped in my apartment to return the call and called literally 2 minutes before I left for the hospital. The writer, J. said, I would like to follow up but we go to press at 4:00 p.m. today. I told him I would be back from the hospital around noon. But I expected to be doped up and have no clue what use I might be.

Back to the radiation going through my blood. The male tech was giving the female tech some odd looks and they kept saying, “It takes up to five minutes for the radiation to spread.” Then the female tech left to talk to someone. Then more looks at each other. At this point I said, “I’m not going to spontaneously combust am I?” The joke kind of fell dead as the female tech came over and said. “All bodies respond differently.”


She continued, “We need to inject you again.”

No! No, no no. “This isn’t a dream?” I asked her, “Because I do actually have dreams very much like this, called NIGHTMARES!” No, not a dream.

“Really, you are asking me after I finally got the shot without sedative and know that I never have to do that again to now, right now, do it all AGAIN?”

Everyone looked pretty glum. And Linda didn’t say, “You can do it.” She said, “Just try and think about it.” I knew if I decided I couldn’t do it, she would have supported that. Of course the EMLA had been off for like 20 minutes. So I checked my arm and I told the female tech, “this spot seems to still be dead, can you do it here?” She said she could. “You only get one shot.” I told her. She told me, since it was radioactive material, she only got one shot either way. How…..comforting. Anyway, here I was knowing I was GOING TO FEEL IT this time and I told her to tap me when she was ready. After three minutes I said go and yes and then just starting screaming and screaming (Still a little hoarse). And yeah, I felt it, but she was quick and it was done. My right arm (the weak one and the injected one) was spasming all over the place as was my left. But they were getting their pictures. This is the perfusion part to see if the blood vessels are going to all the parts of the lung and exchanging oxygen. Anyway, at this point I had enough radiation that I can’t go near pregnant women for a day or so.

We finished up, and I was exhausted. But I went home and put all the photos from Fran and the nails in front of my door in a file along with my word documents and burned them on a DVD for Monday Magazine writer J. who came over at 1:20 and left at 2:00 with the disc and the interview notes. Either the stress, the radiation or both did a number on my bowels at I was sitting in the bathroom at 3:00 when J. calls (one hour to deadline) saying the DVD won’t show the data (I checked it on my computer before I gave it to him), can I mail him the word document and two photos he wants from the ones I showed him? Out of the bathroom, sending the photos, sending the word doc, sending another email saying all was sent. I get no emails for 10 minutes. So I go back to the bathroom. Quarter to 4:00, I find a 3:30 email, “Photos came through, where is word document?” I tell him I sent it first, send it again and Linda sends it from her work. No email on if he has received it, nor does he respond to phone calls at 4:30.

I go to sleep. I wake up 7:40, drained. Email from J. saying the piece was severely shortened and is depressed as doesn’t do justice to issue. Needless to say, this does not cheer me up or make me feel the work I did from 12-4 including a last minute 45 minute interview which ended with me on oxygen was worthwhile. Guess I won’t know until tomorrow or Thursday if I am a two line mention “Disabled woman on welfare kept in home” or the like.

Sorry, it has been a shit day, and looks to be a shit day for at least two more days to come. There was no way on earth I could make hours of tests and a couple hours of work of trying to get Victoria to realize that keeping people with disabilities trapped isn’t “a shame” or “regretful” but what the rest of the world calls a violation of human rights very interesting. It was a ‘slog though it’ day and this is a ‘slog through it’ post.

I don't think about Japan or cherry trees, just getting the next minute or thing done. The only Japanese related event today was trying to figure out how to take a small enough oxygen concentrator so that I can strap it to the back of my wheelchair (and find someone to rent me a smaller wheelchair for a month). I don’t dream of Japan right now, I dream of a day, maybe three weeks from now, when I DON’T have appointments for a few days.

Not going to happen for weeks to come.


em said...

Well, hell. I'm sending a hug, it's all I got.

yanub said...

Well, but that was thoroughly unpleasant. You'd think medical labs would be disability-friendly, but no, apparently they only expect able-bodied athletes to come in.

I'm curious about your needle-phobia. Did you have it before you started your current career as diagnostic guinea pig, or did it develop as you've been subject to the tender ministrations of lab techs? Forgive me if you've already discussed this and I just haven't read that post.

I hope that the story on your apartment travails turns out better than you fear it will, so's to sort of make up for all the agony of testing.

Elizabeth McClung said...

Thanks em! I take what I can get. hee hee.

Yanub: Yeah, it wasn't fun.

My needle phobia is life long and I write about it and how I finally worked out a protocol to get needles in a blog a year ago when I had to start the "blood tests"


Today would be the equivilant of if you are phobic of spiders (like throw yourself out of the house scared level than be within 20 feet of one) - and you were slowly dropped into a crate full of spiders to crawl all over your body - and you managed to do that and not go insane, and then they told you that you needed to do it again. Needle phobia actually kills people, there are medical journals on it - not just the ones that have a heart attack from the approach of the needle but die rather than recieve treatment. Hope Tomorrow is better than today!

Katrin said...

Needle phobias as so beyond any words that I have, just thinking about it makes me shudder and cringe uncontrolably. And I can entirely see how people die from them.

I have a rule with my docs- you get to stick me 1x every 2 months. So you'd better decided what you want for the entire next 2 months, now, and discuss things with the other specialist and figure out what they may want done, before you order anything, as you don't get another chance for 2 entire months. I don't care if I am dying or what.

I am thoughouly amazed you were able to go through with that. I mean, I need at least a week to prep myself and they gave you what less than 12hours? Good lord!

rachelcreative said...

Wow - well done you on needles without sedative. Maybe all that screaming expelled your radioactive breath.

I have a mental picture of you as some glow-in-the-dark, kick ass girl super hero :)

What a uber crappy day though.

cheryl g said...

Well fuck, I would just call that medically sanctioned torture...

Wow that's a lot of radiation. Maybe you'll develop super powers since exposure to radiation seems to be a favorite way for that to happen. (The Hulk, Spiderman, all of the Fantastic Four, etc. ad nauseum) That would be cool!

I'll be sending you mental hugs this week - I know it's going to be rough.

Katrin said...

It's strange though. I can usually handle acupuncture. Just not blood draws or IVs. I think it's probably the setting and types of people (ie those who would rather hold you down and force you to have the proceedure done, than those who would just say, ok, this is totally elective) where certain things take place more than the actual needle for me. Though I don't know.

ms bond said...

Many many good thoughts being sent your glowing green way. May you not have to face another needle for a very long time. And maybe the news story- even pared down- will make the difference it should. Its already made a difference in my life....now I know I hate a person named Fran. I'm thinking of you.

Lene Andersen said...

Good. God.

I am speechless. Sending hugs, though. Hope today is better. it's pretty sad when you measure improvement in "not gonna be radioactive today!".

(any chance your G.P. might do a bit of advocacy re; coordinating tests/encouraging specialists not to test unnessesarily? Of course, all these tests are Vitally Important, right? At least in their minds. Sigh...)

FridaWrites said...

I'm phobic of spiders, so I get it, totally.

Glad this set of tests is over for you.

Donimo said...

Intense. You know, one of the things that absolutely shines through this post is what a good team you and Linda are. You wrote in an earlier post about being afraid that she would leave you--and I really understand that worry when one partner is very sick and the other is not--but I read your posts and see such a deep connection between the two of you. Having someone see you at your most vulnerable and afraid and having them stand by you and help you through is a beautiful thing. And it's rare.

Stay strong, you two.

Elizabeth McClung said...

Katrin: I need to take your training course on Doctor obedience Training, I can never get mine to obey me; not even the most simple commands, much less the "you only get to stick me once every two months" - That's an awesome system so sign me up for Doctor obedience School.

RachelCreative: I did ask them if I would get x-ray vision and they said that Spiderman has made thier job harder because, no, nuclear stuff doesn't make you a superhero, just makes your body glow under gamma radiation.

Cheryl G: Thanks for the hugs. I kind of wish I was in the US so I could go into a bunch of federal buildings and see if my radioactive levels were enough to set off the "terrorist alert" - see how I try to turn a lemon into "terror for a whole building due to my curiosity"

Katrin: Can't do the acupuncture, can't do anything that invades the body which includes dental cleaning below the gum line (the arm chair have this permanent indentions after). I think you are, I can't remember which of the four types but the solution is control - like you have all the control, the person who will give you the needles stands by you for several minutes so you feel in control, they only do things when you tell them - if you look on the link above you can find out which type of needle phobic you are.

Ms. Bond - yes, the owner has not responded to our letter nor to the fire department but then, nor has Fran bothered us - so I can live with being left alone. Thanks for the support but I think there are more than a few needles in my immediate future (like next week) - I should have all the details by Thursday. I've kind of lost track that Doctors actually help people (not ME, but other people) after 14 months of tests and them still going, "We really need some more tests."

Lene: True, today was electrical conductivity day, not radioactive day - so I can see which makes me tired worse. If they would just inform me so I could say, "No, I don't think that IS important, it might have been a year ago, but we have moved on" or "Yes, I see what you mean" - I would feel less like the lab animal I am.

Frida: Me too - I knew nothing about the tests except there was a needle so most of it I picked up from the poster in the hospital "Nuclear Medicine and YOU" (and here I thought Nuclear and Medicine where words you didn't use together except with like Cherynobl).

Domino: Good point, I said to Linda that I was so glad she came because I couldn't do it without her. She has been trying to explain to my parents but they don't get it saying, "Hey, I, Linda, can't go to all the tests that Elizabeth has to, and she does, and SHE gets the test and SHE is SICK, and weak." Oh well, sort of the good money after bad I guess. But yeah, I couldn't do this on my own; I'm not sure GETTING over 100 tests is an accomplishment but I share that dubious glory with Linda.

Dawn Allenbach said...

*hugs you*

Because you probably don't want to read another sympathetic comment anyway.

Anonymous said...




Means "lots of virtual hugs." So, (((((hugs))))).