Wednesday, July 15, 2009

Cat Visit: the full story (plus trip to the beach)

I have been quite ill the last few days, I am sorry that this post has been so delayed: I had probably the worst 23 hours in memory. I lost not only the best possibility of IVIG in a timely manner: not because the neurologist didn’t think I was terminal. And not because he didn’t know how to do IVIG but because he did not know anything about central autonomic failure and in 37 years had not treated it, and not with IVIG. There are NO autonomic failure specialists in this province. And even the top Neurologists of two countries telling him this is what needs to be done was not enough to stop him from saying, “It is not something I am going to put my name to.”

No treatment

No pain clinic or oversight of any medications.

No GP.

And then, after a grueling 6:30 am prep for a medical appointment and the joyful neuro visit in the afternoon, in the evening my body reacted to something, slower and longer than Cheryl’s did. And I evacuated until 5:30 am. When I finally slept, I woke 30-40 minutes later, said, “help” and Linda helped me BACK to the bathroom for round 2….well actually round 14 or so. I had been spontaneously bleeding from my nose from 4:30 a.m. on, then my body went into shock. I bled from the anus, as well. I got back to bed about 6:30 am.

The workers with an earthmover, a truck and several other heavy machinery started early, before city bylaws allow at 7:00 a.m. – 30 minutes after I got to bed – they finished at 5:30 pm.

But I have kitties. Or memories. At the shelter we got a bit confused and went into the ‘small animals’ room, which turned out to be mostly rabbits. Each rabbit had, if not another rabbit, a stuffie companion to be with. Indeed, it was nice but strange to see that the animals here were treated in a far more disability and friendly way than um, humans like me.

In the cat rooms, of which there were several: one large room which extended to a expanded play and sunning room and then an outside room. I did not want to go to the outside area as I would have had to flip up my casters and that would have scared the cats. Most of the free roaming cats like this one didn’t have a name I could find.
I quickly learned that cats really like being slowly scratched or rubbed underneath the jaw. This cat was purring in quite a contented way.I also talked in a soothing voice in case the cats needed to recognize me when I came again. Since I have little scent (I actually borrowed Linda’s gloves for this trip), I am hoping they will recognize the voice.
As you can see, visiting cats and having kitties accept me has absolutely no effect whatsoever on my happiness or well being.
There was one cat, that looked a year or just under, which didn’t want to be petted but wanted to hide under the wheelchair. So everywhere I went, the cat would follow. I guess with all the rooms they forgot one thing, something to hide under and spring out from. Anyway, if you adopt this cat, expect to find him in small spaces or under the sofa.

There was a bonded pairing of an eight month old black kitten named Betsie (ug! The name!) and Murray. Betsie was VERY outgoing, and Murray was pretty shy. Betsie liked to play, and then like to run back to Murray – a total momma’s boy…except Betsie wasn’t a boy and Murray wasn’t a mama. But more on that. Here Betsie is playing the ‘Spring from the back of the cage and chomp the finger’ game.You can see a pink bald patch of skin on Murray. When I first went to the cage Betsie didn’t know me and Betise went back and sucked the teat of Murray...except Murray is a guy. So instead Betsie has licked all the fur off of that section and licks it or suck it when she feels sad or needs comfort – the cat equivalent of sucking a thumb. Here is the older, more mature and shy Murray coming for a sniff.
There are sunning shelves all along the one wall in the next room as well as climbing and jumping platforms. As you can see with this platform, there are stairs for the older cats to walk up to the platform in order to sun themselves. A sort of cat disability adjustment. The shelter did a good job with pairing, with other ailments and with older cats to accommodate the needs and give them equal access.

Apparently, I found out later, that when cats like you or want to really know you they touch noses which is the cat equivalent of a ‘hello’ or handshake.
I have to admit that I spent a great deal of time with the kitten Betsie and the two year old Jasmine who ACTS like a kitten. First, using all FOUR legs, I am ‘officially caught’ – those pesky pink wiggle things will wiggle no more!

Then, while holding me still with the back legs, she comes in for the CHOMP!After a few chomps, Jasmine licks my finger to show it is all in play (that is my HOPE, instead of, ‘she licks my finger, hoping to lick up the blood from her beheaded prey’).
Of course, whether it is all in fun or not, that doesn’t mean she intends to give up my finger. She caught it and now it is HERS.
Jasmine also like to play the catch and chomp game upside down. Which amused her. Here she is resting and of course STILL holding the finger. I think I am supposed to rub her stomach and tell her how brilliant she is. But I am far too dense (hey there were bars in the way) so she had to make do with playing with me some more.

After the cat shelter Linda went to get some fish and chips so she dropped us off at the waterfront, atop the cliffs. It was sunny but with a good breeze to keep me cool. Cheryl and I rolled and ambled along the top of the cliff, looking out over the water to Port Angeles and also people watching.

I found, along the cliff path, this very long and very steep trail down to the beach, which meant I had to go back and forth and let the sides of the trail stop me and the wheelchair by ramming my feet and footrest into them. Fun.

It turned out it went down to a viewing platform, where we could see the driftwood of the beach and the curve of the bay. The sun was high in the sky.
The last bit down to the beach was set of stairs so even if I made it down.....no way back. So I asked someone passing by to take a picture of us. By then it was time for the hard part, to go back UP the path, inch by inch. Ouch! I stopped to take a drink every bit of shade and we met Linda and off home for some fish and chips, watching anime and then off for a nap. A not so bad afternoon.

18 comments:

liz said...

Beautiful pictures! Lovely kitties and beach!

I'm so sorry about the neuro.

Lene Andersen said...

I don't know whether to tear my hair out or cry about the bloody morons who pass for doctors in Victoria. Fer fuck's sake!!!

The kitties are lovely. I'm so glad you had some therapeutic feline bonding. And as usual, the place you live is gorgeous. Just breathtaking. Mean and petty, medically speaking, but the view is amazing.

Hope the volcanic intestinal rumblings/eruptions are better.

Neil said...

I was wondering how you got the cats to notice you; borrowing Linda's (cycling?) glove is cheating, though - they'll think she's twins! But at least they have no effect on your state of mind. Yeah, right. :)

They are wonderful creatures, and I enjoyed the company of the cat my Beloved owned when we met, then the one we adopted. But it is so hard to lose them that I don't think I can bear to own a third cat.

And an afternoon on a beach as well; you DID have a good time. It kinda balances the doctor's news. Or not.

Those idiot doctors seem to be worried about malfeasance, so they're risking nonfeasance instead. Arrgh!

Think of kitties, not doctors...

Love and zen hugs,
Neil

JaneB said...

Aw, cats are great! Some animal shelters are definitely much better than old people's homes, never mind your medical system's total incompetance and cowardice - what does this man think will HAPPEN if he "puts his name to it"? What are you going to DO to these GPs? Are they that afraid of being sued?

I am very glad that there were furries and sunshine as well as horrors in your day. Thanks for sharing the pictures!

P.S. there is some hopefully pain-killing manga on its way to you - good old Amazon, it is such a wonderful system!

wendryn said...

Sounds like a very good day! I'm glad you have the memories to hold onto when things go bad. The pictures with the cats are great!

FridaWrites said...

This really upsets me for you, the lack of IVIG. It's standard for severe autoimmune problems and a number of other rare diseases--it gives the body something to attack other than itself. I just pray he changes his mind. There's nothing to lose by giving it to you, and it's simply a product of the body--immunoglobulins.

Very sweet animals--I am glad you got to spend some time with them. My daughter would love a rabbit, though I've hesitated since we may have to move at some point.

The waterfront looks beautiful.

Nancy said...

The cats look like so much fun! I really enjoyed seeing the pictures of you playing with the cats, in particular: they seem like really nice animals. The markings on Jasmine's coat are beautiful! What kind of a cat is she? I'm happy that you found such a great place to visit--I hope it brings you continued happiness. :)

Diane J Standiford said...

Cats are special. Since time began, they have held a high place in humankind. And they know it. hahahahahaha Great pics, I love to see loving couples enjoying a simple day. How you can smile and put the bad aside, well, that amazes us all. You both set good examples for us. Dying is a part of life and you refuse to have one without the other. Amazing. Purrrr

Stephanie said...

I liked the middle and end of this story, but not the beginning! Don't worry about delaying your post -- we all want you to take care of yourself so that you stay NDY!

It's too bad the people at the shelter aren't so nice though, as you alluded in your comments in the last post. Going to a shelter regularly sounds like a good way to relax and beat stress for me.

Raccoon said...

You were supposed to have the fish before going to visit the cats! Then they would pay lots of attention!

You know, going back up that slope would have been a lot easier with a power chair... Nice greenery on the slope, although not so much at the top of the hill. Do you get sunburned easily?

On your medical care: a couple of blogs ago someone suggested sending an article to various newspapers? When you do, make sure to cc every politician and government office that you can.

Something has to change.

SharonMV said...

Dear Beth,
I expect the neuro wouldn't "put his name to" IVIG wasn't just his ignorance but also because IVIG treatment is so expensive. We PID patients have to fight for it all the time. People on public medical care in the USA often have problems getting access to it. And many with insurance have to fight for months to get it approved. And even lucky people like me who didn't have to wait (unless you count the 20 years I was undiagnosed) have problems with access and fear of losing this life-saving treatment. For those with CVID and other primary immune deficiencies, it is the only treatment and is necessary to preserve our lives. And then we still have to pay our co-pays (mine is 10%, but 10% of $5,000 or more every 3 weeks). All year I've had to deal with the special pharmacy calling me the week before my infusion & telling me I must pay or I won't receive my IVIG. And the pharmacy is owned by my insurance company. Much more to that story, but I won't go into it now. The latest thing is the form my insurance company sent - asking if I'm covered by a secondary insurance company or If I have social security or disability. They want someone else to foot the bill. I expect next they'll try to find a way to drop me.

Here the FDA has approved IVIG for treatment of certain diseases other than PID, like CDIP, peripheral neuropathe, etc. I expect those people who are trying to get it for conditions not yet approved have a hard time getting it covered. Anyway, it's often a fight.

I don't know how it works in Canada. Maybe they only approve IVIG for certain conditions, so this doc doesn't want to do the work or take the risk (of trying to get an expensive treatment for you). Well, that makes him an idiot & a coward. We PID people have to go to a Clinical Immunologist at a University medical facility to get a proper dx & to get a letter sent to our insurance companies to start IVIG. I know the last thing you want to think about is going to another doctor, but maybe you could find a neuro at a university who is more knowledgeable who is willing to help you. Some people with PIDs have to travel quite a ways to find a doctor who can dx/treat them.

My other thought is that maybe you could try & get the IVIG for one of your secondary conditions like neuropathy, since this doc doesn't seem to know enough to treat the autonomic failure. It would require finding out what your health care system will approve IVIG for.

And why no pain treatment? Did this doc refuse to treat you at all? I know it's hard to do this, after so many docs have let you down & you probably have little fight left in you. Everyone here would support you in any way we can, if you decide to go to another province to find a Canadian doc who will treat you with IVIG. If you decide to go public & try to get the press or TV news people to help, we can write in support.

Thank you for the story of the kitty visits. It is so good to see pictures of you smiling. And the st/roll on the cliff above the ocean & down to the viewing spot was lovely to read about.

Sorry about spouting off so much about IVIG & medical stuff. I'm not trying to tell you what to do, only what I know.
Sharon

Full Tilt said...

What a wonderful cat visit! They really are splendid creatures. I have three with chronic health issues. The neuro/medical news is horrible once again...I am so sorry. No-one deserves that, especially not you. Can you interest the press in this situation???

Loved your outdoor shots, too. Take Care.

E AKA Full Tilt

Neil said...

It's better to promise nothing and deliver nothing; that way the doctor can't be held liable for mistreatment. Again, Argh!

I still like Shakespeare's solution: "First, let's kill all the lawyers."

Positive thought: I like the bag on the back of your wheelchair!

Love and zen hugs,
Neil

SharonMV said...

Dear Beth,

I hope you weren't discouraged by what I said about problems here in the USA in obtaining IVIG. It's just that for most people there is not a clear, quick path to IVIG treatment. But people do get it. I was hoping that the letter you had from the previous neurologist (and I guess the neuro in Seattle also agreed) would be enough to get things started. I am so sorry that did not happen. If you had by some good fortune (which has so far eluded you) seen a good doctor who was actually concerned about you & willing to learn,things would have been different.

There must be some procedure whereby new treatments can be covered in the Canadian health plan. We have 'compassionate use" here. When a medicine is already used for one (or more illnesses), allowance can be made for it to be used to treat another life-threatening or terminal illness. I'm not sure weather the insurance company will then pay for it or if the medicine is then provided by the manufacturer. I'll check into it. As I mentioned before, it may help you to go straight to a manufacturer & see if you can find any help there. If the IVIG was supplied, even for a short time trial, then you could get the Seattle doc to Rx.

I know, you need an army of helpers to write letters, find info for you, etc. It's too hard to do all this when you're so ill and Linda's so busy. I can't even keep up with the work I need to do dealing with my own medical appointments, bills & insurance troubles. But if it will help you get IVIG, I can put in a few hours & there will be some among your readers who will help.

Sharon

Elizabeth McClung said...

Sharon: Maybe it is political, and maybe it is a budget thing for VIHA (yes, same organization would have to pay - Vancouver Island Health Authority). The doctor WOULD have given it for peripherial neuropathy but while the two previous doctors including the one I made a complaint about said I had "moderate to severe" and then "Severe" peripherial neurophathy, the doctor, who said he had regularly given IVIG for peripherial neruopathy said he couldn't see it (of course, he had to hit my ankles, then turn and wack down on the sides of my ankles, then ask me to ball my fists as strong as possible and wacked my ankles - no deep tendon response; he also did every cheat imaginable on my knees, and tested the bone line (where nerves on right on the surface and most likely to have a response)) before saying he could not detect anything beyond minimal P.N. including the tests (countering the techs, doctors who interpreted them and the neurolgoists who ordered them). He did not want to give me IVIG for Peripheral Neurophathy which he could have (even to stop a progressive autoimmune disease) and he didn't want to use it for autonomic failure (which the Mayo, Chicago and many other hospital are using it for to attempt to isolate the autoimmune component).

It was basically, "Hey, I just put the cyanide in the chamber, I don't watch what happens after. If you want to make a fuss about it then try to find someone higher than me because you are NOT getting my name dragged into this, not when I work with the same doctor who already refused to give it (against orders)." The same, "This is my inch" that lets genocide and all the evils of the world occur.

Now, if I was in Africa and he took a machete to me, then it would just be tribal, or 'a tragedy' or 'was she Christian? If so we can write that up in our newsletter." But the fact that there are individuals who all see exactly what is going on, that this is effectively the guard who tells the people to the right or the left at concentration camps, the guard who tells people to leave their luggage and it will be returned -that one person leads to another and they see the file and they know I am going to die but THEY aren't killing me are they, they are just part of the system.

We don't want to believe that a system which puts money, or worry over a colleague at a hospital not trading shifts with you or just the hassle of writting up forms exists and kills people...but it does, every day.

My only regret is that I am not contagious, that I cannot take off the special rubber gloves and shake the hands of every one of these people and tell them, "Hey, you did your best and I'll bet that you'll find that a lot of people would act exactly like you." Because I know that would be their future.

That's not a kind thing to say, but right now, when someone takes home a large salary for knowing and abedding in killing someone - either they go on trial for crimes against humanity, or they experience that struggle themselves. If you don't want to CARE then don't go into a field about taking CARE of people, about HELPING people. Of the last dozen doctors, 2 have cared. The rest just made money. It makes me want to smash BMW's. I AM funded for IVIG. All I need is the signiture of a single doctor willing to authorize the hospital to administer it with all the other IVIG patients.

SharonMV said...

I'm so sorry Elizabeth. It's just so frustrating that doctors should be like this. Doctors who are supposed to help, at least "do no harm". You expect it among politicians, business people, insurance companies etc. It's so very disheartening. I've dealt with my share of "bad" doctors, who didn't help me & even caused harm, but it was through arrogance or apathy, not malevolence or just plain cruelty. Having to experience this directed at yourself again & again - very difficult. And it has & continues to make me angry. i can't imagine how you are able to deal with it.

Well, I'm still here for you. Even if I can be no use with this issue, I'll continue to be here, to read what you have written, to remember & be a witness and to be your friend.

Devi said...

Once more, I can't find the right words, but I'm here to listen (read).

And I'm glad that there still are kitties.

Kate J said...

Others seem to have already said everything I wanted to say... about the doctors and about the cats. What lovely pictures of you with the cats, and on the beach trip too! I'm glad that you're able to find some moments of joy and beauty amidst the pain and despair.
Thinking of you... even though I won't be blogging or commenting in the next week, as I'll be out of reach of the internet. Down at the beach, and (hopefully) doing some sailing... although the weather is so bad here I don't think it's likely. Gales, flooding... they call it a British summer!
Thinking of you! Stay strong (and yes, you are strong. NDY!
Love & peace