Wednesday, July 23, 2008

A sum up of medical stuff, but Yuri, postcards and ANIME GIRLS!

I have yet to see my GP, which I will see at 6:00 pm, so a very late nap for me (the purple/blue Beth). Oddly, my heart rate was elevated for 6 hours yesterday over 100 bpm, at rest. And when agitated, going much higher than that (like 140), which is kind of tiring. So tiring that when I came to bed, I had a small seizure and stopped breathing, and it was an hour and two incidents of mouth to mouth resuscitation before I was breathing on my own, even with oxygen. I got to sleep at 4:00 am and was woken after 8:00 by doctor’s offices, and then every 40 minutes there-after, though I kept giving them Linda as the contact person. It seems that the receptionist for Dr. Atwell-Pope is new and thinks that I am someone else and that I was calling about being refused to see Dr. McClellin (who is that?). Then Cool Aide, called (my GP clinic) and I explained part of the problem and explained about last night begged them to stop calling me. That was at 10:25. Then they started the road construction outside. So I will be lagging a bit for a few days I think.

But before we go on, let us take a nice break and just gaze at these wonderful anime girls (my anime girl post cards arrived, all 25 of them!). See, this is what is really important......ahhhh, don't you feel better? Okay onward!

In case you are tuning in, the seizures which have been explained by Cheryl and told to my GP by the VIHA nurse prompted him to action in calling Atwell-Pope, who said I could only be diagnosed in the Neuro-Psych Ward (and I was going to be admitted under an emergency basis in the next two weeks). This seems a very odd way to diagnosis everyone in Victoria and Vancouver for epilepsy since it only has 10 rotating in-patient beds. Anyway, it turns out that under the UBC neuro-psych ward there are four or five admittance rules, and I don’t fall into them. For instance, I have not had a Psych consult yet which is required before admittance. You can’t be admitted if you are immune suppressed (hand up), or if you have an autoimmune disease (hand up – the head of Neurology teaching and Atwell-Pope’s mentor put in her letter that she believes I have an autoimmune disease which is causing the autonomic failure). Last and most important I cannot be in emergent condition (hand up – like not breathing on my own?), or likely to need emergent attention (hand up!).

Also, looking at the big picture, I have anemia which is getting worse without a known cause. I have an undiagnosed autoimmune disease (let’s ignore the autonomic failure which causes heat stroke and the heart problems and the oxygen conversion). Which means that I need to see someone who can address and test THOSE issues, which will kill me, particularly the anemia, without transfusions or other treatment which is needed in a hospital not an neuropsych ward with their MRI and CT scan. I am seeing a Rhumatologist in less than two months. He can diagnose and treat the anemia and autoimmune disease; which to me is a priority. IF after that, I still have seizures, we can examine how to get those treated (like in the states, or after seeing a autonomic failure specialist). The problem is that everyone is going around talking about “Conversion” and “Disease of exclusion” and I already HAVE a disease of exclusion: either MSA or AAN – both of which have hospital records, expert opinions and test results to verify. Conversion disorder has….no evidence for but much against (like the nerve conduction and MRI tests). Mezei mentioned she did have one patient WITH autonomic function…..but she believed that the autonomic failure was a form of “Conversion Disorder” (this is medically considered impossible).

But the thing is, I am not spending any time more than today on this, besides changing the medical power of attorney so they can’t use my stroke and seizures to say that I am unable to make decisions and thus the doctors need to make decisions for me (they use this for mental illness too – say that your denial of getting ECT, which they HAVE as a treatment in the NeuroPsych ward they are sending me to, is just a manifestation of your illness and that with a few zaps!……). I am concentrating on Postcards, writing postcards and doing a secret fun project because these people will only steal my current quality of life, such that it is, if I let them. Get me to a pain specialist and a Rhumatologist and then, if or when there is time, we will examine the seizures in the USA (or the UK…or Mexico…or Columbia…or Cuba…or India) where they seem to be able to declare epilepsy without needed a psych evaluation or putting the person in a locked neuropsych ward.

So the news that my anime girl postcards arrived means I am in heaven. Only problem is that I want to keep them all for me! I mean, look at them, who wouldn’t?
But this will give me a lot of options for the people who want anime girl postcards and the Yuri lovers and the lesbian and bisexual readers who want postcards (never too late, just email me at mpshiel at hotmail.com with the title Postcard). See, to me, THAT is what is important. And yes, less pain and maybe some treatment, but I can’t control that but I can control this. So I can send out these postcards and make other people happy. I hope THAT isn’t considered a mental illness yet?

Anyway, I wanted the people to read here to have something NICE to look at and to know that I will put little updates but I am going back to writing about disability issues, not just my wacky doctors. And life issues and squirrels and having fun with friends and the life of a woman in a wheelchair. And that is what I am doing right now, choosing life, to LIVE all the minutes I can, by doing what I want and enjoy doing, which is postcards, and emails to people, and other secret special projects (some of which may have started to arrive). You have endured my terror, how about joining me in my living? And sharing what you are doing to affirm your living this week? Look at these (I have 25 of these postcards, so lucky!).

20 comments:

SharonMV said...

Dear Beth,
Very glad to hear that they will not be able to take you to that place against your will. Your plan is good. Best of all, you get some time back to live your life.
Love all the pretty postcards!
We've been having some trying times here the last few weeks (re: hubby's job being in jeopardy & hence our medical insurance). And I am trying to stick to the plan, have faith that things will work out. Also have had to go to Physical therapy to rehabilitate my ankle & leg from the Achilles tendon injury & some bad problems that happened to joints on the opposite leg while i was in the cast & boot. I have a good therapist & was able to make her understand how sick I am, so the appointments have been OK.

So i have been spending whatever energy I have left to work on my stamping & paper projects & thinking creative thoughts.

But then today, my only day off from medical appointments, I dedicated to resting as I am very tired from lack of sleep, pain & a sinus/respiratory infection. So I was in bed, doing a little work on projects for a few minute here & there, when I got a very, very bad phone call. A case manager from my insurance called to say they were not going to work with the nursing agency anymore as they were not doing the proper paper work & so still not getting paid. She was surprised to hear that my next infusion is tomorrow & that the nurse had confirmed it. So still hoping that will happen. The insurance lady kept talking about how it's hard to find a nurse & I should just go have my (7hr) infusions at the outpatient oncology infusion cent at the hospital. I kept telling her how this would be very difficult (really impossible) for me. So anyway, I think i convinced her that this was not a good option for me. I was very upset at first. I called the specialty pharmacy that provides my IVIG medication & got them to call the insurance company. Like you, I'm not going to spend every day making phone calls & worrying about this. Have already done that several times. I am calmer now. I'm going to call my doctor & tell her what's going on. Let them work it out.

And now that I find you enjoying your lovely aninme girls, I am happy as well as calm. So off to more resting & hydrating to prepare for my treatment tomorrow.

Sharon

abi said...

This week, to affirm that I am living, I shall take my 11-year-old sister to visit my 20-year-old sister in France. I 'ought' to be going on holiday with my boyfriend, but the baby sister won't stay little for much longer, and the little sister won't stay in France for much longer, so I am going for it. I have your address, and shall send you a postcard.

It sounds to me like you are working the mind over matter thing today. Not that I feel that you have any obligation to do this, though - your posting's great when it's introspective, and it's great when it's not. (And I shall stop digging now (SO many things wrong with that sentence), before it gets convoluted/offensive ;-) Sorry - the words are not coming easily today. I shall settle for passing on warm thoughts and promises of postcards. Please keep breathing - I've heard rumors that it's important.

Carapace said...

Woohoo! Taking some power away from the wacko docs!

Also: Woohoo, postcards!

There is a lot of stuff going on with your health that seems very familiar. Do you have time/energy to read a fairly length email? or get Linda to read it?

Lene Andersen said...

That first one with the windmills? Gorgeous!

I'm having a week of being foiled in my plans, the latest last night when my elbow/shoulder attempted to repeat the injury of 6 months ago. So I'm sitting very still, watching movies and the last episodes of The Sopranos (my video store doens't have The Wire, dammit). Maybe crawling outside to the park tomorrow, but maybe not. That might not sound very affirming, but after just one day of it, I've found that I needed it. Badly. It may be the most healing thing I've done for myself in a while, not just physically, but emotionally.

Of course, speaking of healing, I should probably stop typing now.

Neil said...

You're bloody awesome, Beth.

What I'm doing this week is preparing for a trip to a war. Oh, it's okay; this war is FUN! For LOTS of information, see http://quadwar.avacal-sca.org/index.htm . And tonight I'll explain on my own blog the gory details of planning.

cheryl g said...

I really like anime girl postcards. I wanna see more...

I like your new plan and support it whole heartedly. I think it will be very good for you.

Shea said...

I really like the first post card. It's very pretty. Don;t know if I told you or not, but my 18 year old is big into anime. When he was 17, I let him go to Dallas to an anime convention for his senior trip. He had the time of his life. Everyone thought I was crazy letting him go with his friends when he was just 17(they drove 8 hours to get there), but he did great.

Victor Kellar said...

This weekend I will be doing the best possible thing I can think of to confirm my living: I am celebrating my birthday and most of my raucous, crazy, overly loud, intense family are coming here to help me do it .. I would like to have all my family but I'm pretty sure there is a bylaw against that.

I like the new plan. And I love the postcards. I like the windmills as well but of course I also like the girl with the arrow and the girl with the teddy bear is telling me something, I'm not sure what it is

Tammy said...

The post cards are fabulous.
I still feel horrible about the medical stuff. It almost seems like an episode of Twilight Zone.
I'm glad you are moving on to things that make you feel happy.
Please try to get plenty of rest, or as much as you can muster.

yanub said...

The postcards are lovely. Anyone will be thrilled to get them, especially knowing how hard it is for you to part with these beauties!

I am glad you have a plan that will keep you out of the clutches of Dr. A-P. Have you contacted the Canadian version of an epilepsy foundation? Because throwing people into asylums for seizures is so retro evil. Does anyone in Victoria realize that it ain't 1920 anymore?

--Shea, that's interesting that your son went to a Dallas anime convention. A-kon or Animefest? It would be too weird if he had ended up buying something from Carapace or her husband.

Raccoon said...

so... no psych ward? Yae!

Pretty postcards... What's your favorite anime?

Okay, top 10 favorites?

So, what are the options in front of you now?

(See, I'm trying to work on a surprise, and I need you to give me some help on it)

Elizabeth McClung said...

ShraonMV: Well it sounds like you are going through the wringer as well - what a horrid situation it is isn't it (I finished with my GP at 7:00 to find that 2 more appointments, one with Nurse Edriss was made FOR me at MY APARTMENT on Friday - this is a long week!).

Your hubby's job AND your insurance, your treatment, and your pain, all very hard, very hard times. My heart goes out to you and I wish I could do something. I hope they do work it out and realize that YOU cannot out phone and out organize three or four different people and maybe they should get together and work FOR you. I hope that I have sent you a card, or something to cheer you up for it sounds like you need both medical treatment AND some TLC.

I am glad you enjoyed the anime girls and that I am honored you felt secure enough to share with me, and us, what you are going through, thank you - becuase I do care!

Abi: Yeah! Go France, I hope you can do something with your boyfriend later but I hope this meeting of your sister works out too. I think it is great becuase as you say, she won't be there much longer and you two can make memories together. Trust me, memories and being there are more important than we think sometimes, being so busy. If Linda were not there for me last night, caring for me, watching over me, I would not be here today - that seems a pretty good proof (Linda cares=I live).

I am working mind over matter - I am exhausted and barraged and yet I refuse to let the people who want to dictate my life do so. I chose to do postcards (though now it seems that 1/2 of Friday is now having Nurse Edriss the woman who said, "Why should I care?" doing a home visit with me. Why? Linda thinks "liability" in case I do die with my requests for home visits on record (unfulfilled).

Carapace: Power is taken away from the Docs, as of now, Dr. Atwell-Pope is no longer my Neurologist of record and any conversation of me with another doctor is a breach of professional conduct, AND a complaint for investigation against her has been sent to the College. I reminded her on her voice mail that if she even tries to talk to my GP or another doctor about me, I will file another complaint and there will be further charges.

Please, if this seems familiar, send an email, even if I can't read it, Linda can read it to me!

Lene: Yes, nice windmills, it seems there is a use for them other than attacking them on horse with lance!

I understand, I went out yesterday for 25 minutes because I had not gone out in a week, of course the clouds disappeared and the sun blazed and I was driven back (hissing behind my cloak!), but I did it.

Thank you for typing what you did - I have a solution for your The Wire Problem. haha!

Neil: What are we going to do today Neil? What we always do....try to TAKE OVER THE WORLD! Sorry, I was having a flashback there. Have a fun war! Did you get my email regarding Francesco's other DVD series?

Cheryl: And more you shall! I have lost part of (most of today) and some of Friday but I fight a retreating battle, I will announce what postcards I finished tomorrow!

Victor: AWWW! You didn't invite me! I hope you have a really great time and that you are upright for some of it.

I knew you liked the girl with the arrow - that's why I didn't show the girl with the SWORD (water pattern down the blade).

Shea: I didn't know, but I am glad. Anime is good for everyone, it isn't just for kids - it is a bit like ice cream, how can you ever outgrow it?

Wow, great parent, letting him do a road trip AND an anime fest - glad that happened and worked out. So email me his addy and I can send HIM and anime postcard!

Tammy: I have left much of the darkness behind, my GP and I are on the same page (his yelp of WHAT! when he found out it wasn't three days I was going but three to nine months I would be kept!). WE are going ahead with the Pain Specialist and Rhumitologist, I will go to the US for a Neurologist, so HELP in anyway that direction!

So from now until the dread RN Edriss invades on Friday, it is all Postcards, surprises, and ME time.

Yanub: you idea is brillant, RN Edriss won't allow me NOT to go to 911 hospital without a dianosis of epilepsy; which with my medical records and talking with my GP and the hospital I can probably get from a walk in at the right doctor referred from the epilepsy foundation. Actually I do wonder if it is the 50's or 60's as not just epilespy was in Neuropsych, I didn't want to say becuase it would get people upset but people with MS, and with LUPUS are sent in there for 'behavoir modification' "becuase while treatment for conversion disorder won't stop the disease it can help the person recognize and display emotion in an appropriate manner" - tools used for this include ECT. Sweet eh, throw complex MS people in and zap them with ECT until they are obedient. SKARY!

Raccoon: No psych ward but instead pain specialist and Rhumatologist. Huzzah - and a trip to the states (more fundraising!).

Fav animes:

Air TV
Mai Hime
Battle Athletes OVA
Kaleido Star (girl motto is: just give me THREE days, and I will learn it! - she does but ends up all bruised and battered - why does this appeal to me?)
Strawberry Marshmellow

But I have all these on DVD. I will try to come up with a bigger list. Did, er, anything show up for you?

I need to go to the states, find a competant and complient neuro person, get a diagnosis which makes sense and some treatment options (hopefully IVIG and some others) and some ways to improve quality of life. Let's actually try STOPPING my body's degeneration, see if I can build some reserves. Try that.

Neil said...

'Allo luv! No I didn't see your email from the 17th. But we DID receive it. I've read it and will reply later today.

The anime girls are lovely, and your plan to save energy for yourself is great.

Actually, I won't be fighting in the war; I'm principality Chirurgeon, which means I get to help run the first aid side of the SCA. Since nothing seems to happen when I'm around (I scare away injuries?), I intend to make it the safest war ever. :)

And it's all good fun; armour can be home-made or purchased but is "real" (ie, functional), weapons are rattans staves, there are marshals/referees, and everyone involved will exchange hugs and laughter and renew friendships before and after the fighting.

Abi: France! You're a wonderful big sister to take her; enjoy the trip. I know she'll remember it for the rest of her life.

Beth, is there anything at all we can do for you or Linda? Please, we WANT to help you. It's what families dofor each other!

Zen hugs to you both,
Neil

Victor Kellar said...

Elizabeth, of course you are invited to my birthday party ... sorry that is has to be in the diry old megacity. I really want you to meet my sister in law anyway, a former member of the west coast medical system and kick ass activist here ... Collette and I have this fantasy of bringing Eartha out to meet you and watching the ensuing mayhem as she kicks the snot out of the Victoria medical community. Now, that would be life affirming

Perpetual Beginner said...

Beth - if you're going to the US for a neurologist, I'll try to hit up my Dad and see if he has any names in that area. Maybe, maybe not, as he has been in the deep South for a decade, but before that he worked at OHSU and Good Samaritan in Oregon. He's on the road right now, but I'll be seeing him Saturday.

I got your package - thank you soooo much. I can't wait to see my Piano Anime!, and the boys love the cards. They're currently poking around on-line to try to figure out exactly what shows they're from and who these people are. And the note pad is terribly cute. What is it about Japanese animated cats?

Kathz said...

Just catching up from abroad and only have time to send love and best wishes. I shall send you a postcard however.

Donimo said...

I'm a total fog-head right now, so bear with me. I'm rather stunned by what you've been through in the last few days. I'm really relieved that you've taken the power away from the horrible Dr. A-P and that you and your GP are more or less on the same page now. Can you get on a the cancellation list for the Rheumatologist/Pain Specialist? I've managed to skip months long wait lists by being on stand-by. I don't know if that would work for you or not. If you decide to try Canada for a neurologist, don't forget that I know a good one in Vancouver. Maybe you want to go where no trail of Dr. A-P would be found, but if you do want to avoid the enormous US medical bills, UBC has a very good neuro dept. But yeah, I'm just so relieved that you are no longer facing lock down.

The anime cards are gorgeous. Since you've taken pictures of them you can keep them for viewing digitally and also send them out. Your postcard project is very cool and has warmed my heart (or thereabouts) on numerous occasions.

Raccoon said...

I got a package from you today! Well, within the last couple of days -- there were a couple of pieces of mail that I hadn't seen...

Read or Die was one that you liked, wasn't it?

Elizabeth McClung said...

Yes, Read or Die the ova is a big one of mine, I always Identified with The Paper, becuase she is so obsessed with books and so am I.

Dawn Allenbach said...

I've not gotten into anime, but the artwork on those postcards is GORGEOUS!

YAY for no neuro-psych ward! Whew!

*sits quietly, waiting for heart rate and anxiety to decrease*