Saturday, August 09, 2008

Decided, 'going to live': 15 reasons why

I had a shock today. In the mirror I could see these two huge smudges on my face, right on my cheeks. I couldn’t figure it out because it wasn’t like I had been reading a newspaper (and then putting my hands on my face). And after rubbing a bit I realized that my face had lost so much weight that with the light above, the hollows under my cheek bones were creating a fist sized pocket of shade. Actually not just under the bathroom light but in the hallway, in most lights, all lights. And my collarbones which seemed to GROW (it was explained that they didn't grow, they stuck out more becuase the skin under them has shrunk) are sticking out in sharp relief. And to add insult to injury, my little titties are heading toward itty bitty titties! I had lost weight, rather dramatically, in just over one week, eating the same as Linda.

It was another one of those moments, along with all the hair that I am losing that brings home that I am not just ill, I LOOK ill.

I asked Linda what she would think she she saw someone at work with my hair loss. She said, “I would assume they had cancer or some other serious disease, maybe if I was rude I would ask them about it, ask if they were on Chemo.”

So I guess one of the things giving me a youthful look is that I have lost 10-15 years of the little fat layers which fill out a woman’s face and cause the rounded cheeks and dimples.

And yet, looking in the mirror, talking to Linda about contacting the case manage to get the dietician to return, and what is next, how do I go about getting a tube put in if that is what I need, I said, “Because, dammit, I want to LIVE.”

I looked at her and said, “Honestly, I have put up with TOO MUCH SHIT to just go ahead and die.”

She said with a little laugh from being at ALL those tests and meetings from the last 16 months, “Yeah you really have.”

“So yeah, screw the dying.” I told her (can you tell my pain levels are less?).

I had several partial seizures during the night. My super painfull, super long day didn’t magically turn off when I slept, I guess but the seizures started. I actually woke up during one when my right leg and arm were going crazy, and then just sort of thought, “Oh well, that side never did cooperate” and tried to go back to sleep.

So today I cleaned out the blood from my nasal cavity (After a seizure there is always a pool of blood in my right nasal cavity, we assume it is from a spike in the blood pressure during the seizure). And I tried to come up with some reasons on why I am NOT going 'gentle into that good night' (seriously, that Lyrica is the BOMB, I can actually think positive thoughts which don’t include burning doctor’s cars). So here it is:

1) No one has ever done it! No one has ever survived my condition, which means that the longer I stay alive, the more “I win!” Admittedly there isn’t really any competition because I assume most people who have this want to live, but since no one else HAS managed beyond a couple years, then living is doing something considered impossible. And doing something considered impossible is what I specializing in attempting.

2) Once I decide to live, then I will have all my willpower to put toward breathing (which is troublesome), particularly if my pain is controlled, as I don’t have to keep trying to escape that (not breathing is a GREAT escape of pain).

For example yesterday, I actually slowed down and controlled some seizures. We were in the doctors office and I was on the brink. I could feel myself tottering, as I had lost control of my eyes, which were starting to twitch and my right hand was spasming and Linda says in this intense voice, “You CAN’T, if you go into seizure, we won’t get the Lyrica.” And somehow, I think through the pain or talking or whatever, I literally HELD ON and was on the brink, in what is called the “aura” for about 10 minutes (couldn’t control my hand so I sort of just held it with the left hand in a clamp).

Does this mean I can control seizures? No. It means that somehow, I was able to stay on the lip of a partial; most of them are like hitting a concrete wall at high speed. A grand mal is a "wham bam and 'no thank you' ma'am" which leaves me fingerspelling upon waking, "Where is that truck which hit me?"

This particular seizure was a combo of pain and fatigue and lack of oxygen and somehow it was one that builds (I have those, they start in a limb and spread, and spread, and spread).

Just in case you think I am some Will to Power dominatrix, I had a seizure this week and had use of two fingers and my thumb and DETERMINED that I was going to drag my body to where I wanted to go….with my two fingers and a thumb. Linda just watched with mild amusement as I pathetically am busy scratching on the carpet willing my body to be dragged. See, just because I can move the fingers, that doesn’t mean I have strength in them, nor does two fingers move an entire body, at least not mine.

3) I want to see Season three of TV series Bones. I promised Linda I would watch season three of Bones with her, and if I don’t live, then I won’t get to see the episodes of Season three with her when it come out on DVD (no TV remember!).

Admittedly, trying to live until the final season of Lost does make me want to STOP breathing (Does it EVER end? Does it ever answer any questions, like why is the Pirate ship there?), so I will focus on programs like Bones, Supernatural, and NCIS for motivation(I LOVE the women in NCIS, Abby the tech goth girl because when I watch with Linda I get to play the “I have that, it is from Demonia! And that is from Morbid Threads! I have that corset, I wore it last week!”; plus the most deadly person on the NSIC team is a woman! The female Mossad Agent David (really a female!) who they keep screaming at, “No, no, we want to keep this one ALIVE!”). Plus there is all the British TV murder series and Dexter, our cute sociopath who is sort of misunderstood (season 2 out soon!). Plus the fifth season of The Wire is coming out and looks to have the grit and reality of the first season. Yum! So yes, I am ready to be intellectually engaged, to be entertained above the normal (which now seems to be reality shows and beautiful people being constantly neurotic and talking about it…..so does that make LOST a reality show?).

4) Writing. I want to go back to what this blog was about, promoting me as an interesting person to read, but also a person who is a writer and a researcher. I want to write that Part II post about gender, social pressure and the results on children who chose gender variant activities. I want to write that book, get it published and go to a fucking book signing and see someone show up and say, “Hey, I really like your blog.” So I can say, “I’m really, really sorry, I honestly don’t swear that much in real life.

Let’s face it, if I WANTED to talk about doctors and a dysfunctional medical system endlessly, I would have gone to medical school or done my doctorate in THAT. As much as I appreciate the way everyone has hung on for the ride through the “Oh My GOD, and here I thought the Canadian medical system was BETTER?”, I want to spend more time being funny, having fun and writing about that.

Come on, hands up everyone who wants to see me go out and try to do a 7K race in my wheelchair and blog about it!

See, That’s interesting. I want to take a trip and photo whore every day another 200 pictures, pick the best to post and write about it. I want to do a book, EFM (Elizabeth Fucking McClung for those just joining): The first 18 months. Or the First year. Or From Epee to Catheter (yeah, I want a title that makes people uncomfortable, does that surprise anyone?).

Sure I am going to write about disability issues, and let ask, why exactly ARE people uncomfortable with, for example CATHETERS when we have public restroom signs everywhere? When you think about it, it is really the same thing (there should be a little portable/disposable catheter dispenser in the disabled toilets along with a tampon and condom machines – hey, disabled people or PWD’s have needs too, just like REAL humans).

5) I want to petition Rick Hansen’s Wheels in Motion to actually include the “all wheelchair users” which is the phrase they USE when they raise money, but they are only giving that money out to traumatic injury Spinal Cord Injuries. Dude (see Rick Hansen is still alive and here in BC!), if it takes 10 years for someone with MS to have loss of all leg function, that is a spinal cord injury, cause nothing from down there is going up the cord, is it? And yeah, as a person who is rated as a partial quad and is headed toward becoming a full quad, the whole simplification, of if you had a tramatic break you are spinal cord injury, if not, they you are just...ill...irks me more than a little.

See I can and have run over my own foot (it fell off the foot rest, and I was shoving the tops of my wheels hard going, “What the hell is this chair stuck on!” and Linda goes, “Stop! It’s your foot!” which was now upside down with the wheel atop it and the toes half sucked into the wheel guard. And I go, “Dammit, not again”, and back up, pull the foot free and tie it down.) But no, I’m not PART of Wheels in Motion (I called them) because Rick Hansen says I don’t have a spinal injury. Okay basic anatomy lesson, the reason it is called a spinal injury is because that is the most common way and really the only way messages reach the brain. If you break the nerve cord, or damage it, the messages don’t reach the brain. If, as in my case, you have some mystery thing going around and destroying each and every nerve, you STILL don’t have messages going up the nerve cord of the spine to the brain, and you aren’t ever going to. So get with the diversity program, Rick!

6) I want to see what happens to me next. I mean, seriously, isn’t this disease just totally bizaare and amazing! First that I am still alive after all this is odd. But also how brand new symptoms/body functions just show up or disappear.

So this week it is that I can’t tell if I am peeing (oh and you can put a burning pot on the top of my legs and I won't feel it). Oh yeah, now I have seizures. Now I can’t convert oxygen. Now I have to go out in a tank top because my torso is superhot and goes into heat stroke (and coma) but I need AT THE SAME TIME to wear winter gloves because room temperature gives my hands frostbite! I mean, this is amazing! I would say it is a hoot, except all of these are really painful or distracting.

But did I think a year ago I would have an eye-patch by my bed and by the computer for when one of my eyes starts to wander or feeds my brain garbage (By the way, a good gift idea! I need cool eye patches for going out or just wearing around). Just another part of the condition.

Look, this may all be Lyrica talking but it isn’t. I have been thinking about this ever since five to seven people in the last several days said to me, “Wow, if I was going through what you are…” or “If I had what you had…” or “If I was in that condition…” which all finish with, “I would rather be DEAD.”

Know what, I wouldn’t rather be dead.

I can make myself dead any time I want, and sometimes, yeah, I kinda want it. But most of the time I don’t. And just because I have a disease that is supposed to make me die (and has made everone ELSE die so far) and that I am progressing through the symptoms like I am trying to beat the rest of the class to the prize, doesn’t mean I want to die. NOR DOES IT MEAN I WILL!

Fuck em! I may be whining and mewling tomorrow in pain and tell you from my depression that I look forward to death and that will be completley TRUE. But today, and some days, what I hope are more and more day where I want to, am determined to and am going to LIVE.

FUCK DEATH! Fuck the crappy medical service. Fuck that I have to do everything though the back door or around the obstacles. I am still alive and I am Elizabeth Fucking McClung and just because I have a slightly/kinda damaged brain does not eliminate that I am still a force of nature. But now, instead of feeding all my energy into vampires like Beacon, my GP, and this medical system, I am going to try and use the energy to come up with and try out ways to live.

There is definitely going to be a part II to this post (becuase I only made it up to 6). And please feel free to add your reasons why I should fucking live a LONG time. Plus maybe suggestions on things I might want to do with my new found determination to LIVE

I will tell you two, which will seem rather odd:

1) I want to get out of this apartment at least four times a week on my own power. I was doing it six, the last few weeks I have done it once a week. I am not dead, and while I may be dead tired, I can still look at the flowers, even on a summer day for five minutes!

2) I am going to go for a ride in a glider (I hope the season isn't over!). I never got to learn how to fly, but if I can go for a ride in a glider, then that is what I am going to do.

Come on, I'm open to being inspired!

To be continued….

23 comments:

Lene Andersen said...

Welcome back, EFM. All hail Lyrica! ;)

yanub said...

Woo hoo! That's our EFM, coming through loud and clear! That zest for life has always been there, just so clouded by the pain that it has had a hard time getting notice.

Reason to live: To work on your swearing so that it matches your blogging. When you are interviewed on the Today show about your astounding book, EFM, the censors' will have to put in for workman's comp from all the bleeping out they'll be doing.

About controlling the seizures: Carapace talks about it on her blog and she's told me about it in person, that she can fight through to communicate when she is having a partial, but that it's painful and makes the seizure and recovery last longer and harder and can trigger a grand mal. You are the only other person I know of to talk about what it is to fight a seizure.

Tammy said...

WooooHoooooo! Elizabeth Fucking McClung is BACK!!!!

Here is a reason: To have the energy to sock it to certain medical personnel who have it coming to them. I REALLY think you have a decent lawsuit on discrimination against SEVERAL of your "carers".

Here is another: There are several different sports out there that need infiltration by Non-AB's, and I think you are just the gal to do it.

It's great to see the determination in your post. I had tears in my eyes in this post too, but this time, they were happy tears.

Shea said...

Way to go girl. Give me hell. I hope that you are able to accomplish all of your goals. If you're anything like me, someone telling you you can't is reason enough to prove them wrong.

FridaWrites said...

The right color foundation can do wonders for even very dark hollows if that's something you want to try. I can't get a bra to fit at all lately, and I've ordered a dozen and sent them back. I don't get it (not weight loss!). I've also had the adventures in extreme hair loss. The rheumatologist tested for lupus and other issues when he could see the problem, fortunately it's just from pain since I don't need other issues to deal with. I give you my empathy with this--it is distressing. No one's going to mistake you for anyone older, though. You still look young.

I think the Lyrica (and other epilepsy treatments at some point) will definitely improve your life span and make you feel better. Pain relief is so amazing, isn't it?

The thing to tell people who say they'd rather be dead (or kill themselves) rather than be disabled is: "Why wait?" Sounds mean, but while most people get pretty disabled near the end of life, few actually carry out this sort of statement. And research shows that PWDs rank their quality of life as far higher than people without disabilities think they would.

Speaking of gender, my son wants to learn to crochet. I've just taught my daughter to cross stitch.

Raccoon said...

I've always thought that there were, basically, two types of pain: long-term and short-term.

I've always thought that males are better dealing with short-term pain and women with long-term pain. I mean, I've always heard that giving birth is painful, and women go through it voluntarily!?

That's me saying that my leg has been killing me all day and I'm having a hard time thinking clearly so I'm going to comment later...

Glad you got your drugs (finally!), and hoping your pain levels and relax a little...

em said...

Elizabeth Fucking McClung, specializing in attempting the impossible.

Yes, this is exactly correct. A Force of Nature.

Elizabeth McClung said...

Lene: Well I was still there, just buried under the screaming banshees of pain. Lyrica does seem to have a good side, I just hope it stays that way. But while it last, I am pimping it to the max - went out tonight for a drink at 10:00 pm, haven't done that in like months!

Yanub: Yes, totally, when you have pain and mortality shoved in your face at breakfast, it tends to skew the view.

I told Linda I was going to try to cut my swearing by half - she had some sarcastic comment. Dammit!

I have been reading Carapace and while it is GREAT that the diet is working for her and that, I have to admit I was sort of hoping for tips on live with the seizures and now it is like the only person I knew in the class is leaving the day I arrive (I don't want her to have seizures! I just, feel, odd, alone - though a person at luminara talked to me for about 15 seconds and knew I had seizures becuase they have them too - how did they know?)

Tammy: I hope back for good, at least a prolonged visit. Yeah, first I am going to do stuff and have fun before I bog myself down in making lives of certain "carers" miserable - though I do HAVE the forms (two sets!) for filing for a judged case on discimination on the basis of federal law of basic human rights, including disability (like say, a care agency that discriminates based on epilepsy!).

Well, I didn't get a whole new set of muscles, I am still weak ass and skinny, just not in mind screaming pain at the moement - what sports were you thinking? Oh fudge, I just remembered I forgot to register for Judo! Better check to see if I am too late!

Shea: well, there is sort of medical history saying one thing and me finally going, "Yes, yes, it is illogical, but I still want to live." My thought while writing this is, "I just KNOW I am going to have depressed respiration and die tonight!" - Just so God can get the last word in.

Frida: I need the master class and soon - I will try to get Linda to take a picture tomorrow. tonight at the pub, I was looking in the window and mirror hanging there as they were playing the gymnastics in the background and I was going to linda, "Honestly, what difference is there between my face and that 13 year olds?" (I had the regulation bouncy pony-tail too), her reply, "Yours is thinner." Ack!

I see the Rhumatologist next month, and I have this horrid feeling that my grand tour though all of disability land isn't over, and he will say something like, "you have Lupus, but that is your secondary autoimmune disease, and we will focus on the main one." Leaving me to ponder as I do with my anemia and the rest, "It's fucking LUPUS, and THAT's secondary too!" (Note: I do not have Lupus, but then, when they started testing I also had an intact nerve system, and a few other things that have gone bye-bye).

I too think that if I can stabilize the quality of life issues I can focus on the triggers and general deterioration and see if I can stop them - if I stop or slow them, then I keep living - that's the plan.

Pain relief is amazing, I feel not like I am high but like I can think without a million nerve ending screaming at me, and my hands shaking so bad I can't drink or type or do anything but lie there.

Personally I think crafting is in your blood somehow. So your son doesn't surprise me.

Raccoon: I am sorry our non-pain days didn't synch. I am sorry you are in pain and I understand completely.

I do think if woman had to have labour right AFTER sex, there would be a LOT less sex. But it is true women are supposed to be better with endurance. Hope you wake pain free - or at least in a less painful state.

Em: Well, I didn't say I was a GOOD force I nature, maybe I am the kind that amuses itself putting strands of hay through trees at high speeds! Haha.

SharonMV said...

EFM, you have to live until I get better & can come up to visit you in Victoria. I can promise you, that will take quite a while, but the time will come.

Oh, those unsickly folk, give 'em a few symptoms & some pain & they think they'd rather die. Even people who understand, don't get it all. One time (probably after seeing some story on the news about a long-lived person) I told Dennis that I'd like to live to be quite old too. He looked at me & said, even if you never get better & you're always as sick as you are now? Well,F-ing yeah! Preferably, I'd like to get better, but even if not, there might be new meds that would make it easier, and besides there's still stuff I like to do.

And about the hairloss, is your doc treating your thyroid problem? (I no the answer to this is"NO"). Because my hair came back after I was on synthroid. I've lost hair several times for different reasons (lupus, interferon treatment, etc) and it's come back several times too. It's possible that some of the loss you're having is from a treatable condition, and not just the main illness.

Sharon

kathz said...

Good news about the Lyrica. I wish I could suggest another goal but it would never be as exciting or interesting to you as the goals you set yourself (and I include goals like getting out of the apartment in the exciting and interesting category because the life you live IS exciting and interesting.

Anna said...

Reasons to live.....
To go to the Little Kitty shop again to by presents for Linda.

To go to Lindas next work party just to show off to her boss.

Go to the library and borrow some books just to support them and raise statistics.

Pray for me, Anna, since my mind is really fucked up at the moment. I bet that if I lived in Canada you would have no trouble getting reasons to live because then I would come and terrorise you and having panicattacks on your living room floor all the time and you would spend time thinking of reasons to live just to tell me. Thats how muddleheaded I am at the moment.Hm..... sorry talking about an egocomment....

Reasons to live, wheren't you getting a new cool wheelchair?

Celebrating your 20th anniversary with Linda?

See if Al Gore is right and our climate is going to hell.

Talking about presidents, don't you want to know who will rule/lead the US?

Wendryn said...

It's amazing how much energy is available when you aren't just trying to live through pain! I'm really glad to see that you are having a somewhat easier time of it. I hope it lasts!

Neil said...

Oh, you sound so much better, Beth! Yes, go for the glider ride. And d it for me, 'cause when I was photographing gliders about (ahem) 30 years ago, I didn't get a chance to go...

Also, I'd love to meet you; maybe you could stick around long enough to offer us all supper for your fifth anniversary with this disease?

Fridawrites: It's grat that your young man wants to know how to crochet. I know several guys who knit or do needle work. And I've had a basic lesson in blackwork embroidery myself. It's not something I'd do lots of, but it looks so cool when done right! I also learned finger loop braiding last weekend, and flat felting. Handicrafts are good!!

Raccoon: I hope your pain subsides soon. Lyrica for everyone?

Zen hugs and cheers for your good mood, Beth, and hugs for Linda too,
Neil

Gaina said...

' Now I have to go out in a tank top because my torso is superhot' Now, now Elizabeth, self praise is no recommendation. *LOL*

Sorry that just hit me right in the part of my brain that governs 'wonky sense of humour'. :P

I want to read the second part of your post about children and gender-variant activities too :).

Maggie said...

i'm sorry i didn't get linda's messae in time. I was at the er yeserday. Everthing is fine; migraine that wouldn't subside but had to do a visit to get shots. Glad you're on the flip side.

Devi said...

"I want to write that Part II post about gender, social pressure and the results on children who chose gender variant activities."

And I want to read that Part II when you write it.

Regarding eyepatches... one of the cosplay costumes I'm working on is going to include an eyepatch. Your posting about eyepatches reminded me of how people wear eyepatches for actual medical reasons, so now I'm kinda... wondering whether wearing an eyepatch for a costume could be offensive, the way blackface is offensive, sort of thing. Is there such a thing as 'disability face'? I'm not writing this as a "dear Elizabeth, please speak for all PWD and tell me that what I'm doing is *not* offensive so that I can pat myself on the back" thing, I'm just... it was just something that got me thinking.

Dawn Allenbach said...

EFM: From Epee to Catheter.

That is the best fucking book title EVER!!!

Elizabeth Fucking McClung was never gone. The pain's voice was louder for a while. I hope the Lyrica continues to help. Who cares if you have to go through "a backdoor" to get what you need to be healthy? I'm just glad there IS a backdoor, and I'm glad you find it.

Curse on, sister!

SharonMV said...

Hey Beth,
I have Lupus as a secondary condition. The primary condition is my CVID (immune deficiency). But once you've got Lupus, you have it & the docs would still have to treat it. Unless it happens to be drug induced (Lupus can sometimes be caused by certain medications) - then stopping the medication usually stops the Lupus. Now treating the CVID can make my Lupus better as the infections cause Lupus flare ups. So fewer infections means fewer & less severe flare-ups (I hope - haven't reached this goal yet). But I still need to have treatment & meds for Lupus.

Conditions like your anemia, which may be due to your primary disease, still need to be treated. But how it is treated may depend on what disease that is. And sometimes in these kind of situations, treating the primary disease will resolve the secondary condition (like anemia). Sometimes the secondary condition must also be treated.

I also have things that are secondary to my Lupus, like Sjogren's, another autoimmune disease. Mine is fairly mild, but it's symptoms still need treatment. Maybe if my Lupus went into total remission, the Sjogren's would too. I don't know.

I'm really hoping that once you get to the rheumatologist, this business of not treating your anemia & other conditions will end. So glad that you are at least getting some pain relief and I hope fewer seizures.

Sharon
Sharon

FridaWrites said...

Elizabeth, I found something on United Spinal (unitedspinal.org)--I don't know if they have a Canadian prescence, but they support people with all spinal cord injuries/disorders (including MS, ALS, etc.), which is great since we do have a lot of problems/accessibility issues in common with SCIs.

Laura said...

Since when did you need a reason to want to live? I guess I must of missed that instruction.

Thank God for backdoors! Thank God for Lyrica!
Hugs,
Laura

cheryl g said...

Blessings on the nurse for her suggestion and on the doctor who wrote you the script. I am glad the pain is scaled back for you.

Elizabeth McClung said...

Rest of the comments in a bit but..

Devi: About eyepatches, I have thought about this all day and quite honestly I think that it is a bit like canes. They can be assistive devices, they can fashion accessories. I WANT more eyepatches in Cosplay, because the Japanese tend to hide disabilities (though blindness has a historic place in Japan); so for example, only Code Geass has a girl in a wheelchair, Air TV episodes 11-13 and the final episode of Kanon 2006. One of the things I liked about Ef: a tale of two memories, is that the character with the brain damage has an eye patch, which is unusual, to show a character with a need for an eyepatch. Venus Virus also has an eyepatch (because of her damaged/extra vision) also Mushimushi, where he gave up one eye for spirit sight. What I am saying is that I wear an eyepatch and would love to see myself represented in society, including anime and cosplay. And if someone wants to wear an eyepatch for fashion, like some people have canes tricked up to wear with costumes - fine! Learn what it is like to have limited depth perception and all that. I wish there were MORE people with eyepatches so I would have a cooler selection. So I don't think a person with a vision issue would have a problem with it any more than someone deciding to wear 'fake glasses' to get that 'librarian look'. So, now I really want to see you with this eyepatch!

Elizabeth McClung said...

Sharon: Yes, we have to meet, which means one or both of us have to get better. So that is one project.

Yeah, people just look and see the pain or the illness or the lying there and don't realize that yeah, that is that but between that is still thinking and enjoying and being with people that matter.

One of the first things I did yesterday was make out with Linda, because for the first time in a LONG time, it wasn't total agony to be touched. And I wasn't going to let that pass. So I don't get better - what value a kiss, what value a relationship - Dennis should rate himself a little higher (I assume you were going to get old with HIM?).

And yes, I have tried and tried to get synthroid, but old endrocrinologist said, "I diagnoise the problem, not treat it." GP says, "I need the specialist to order that." Beth has been asking and will ask again this week, "Please get me a referral to an endrocrinologist so I can get synthroid." Geez, I don't get it, Lyrica, if you take 650 mg twice a day can, no not get you high, but make you dizzy and have blurry vision. What exactly was my GP "saving me" from in not giving me this drug? And what is he saving me from in not giving me Synthroid - it is a thryoid medication, not Crystral METH!

Anna: yeah, they might not HAVE an open Xmas party this year if I am still alive just becuase of the "Scene" I made last year.

I do go to the library, I pass out there all the time!

Hang in there Anna, I have had the panics and they are no fun and on weekend and at night, when there isn't anyone else, yeah it is hard, so please hang in there and know that I am thinking of you, okay.

Kathz: it is a really great news and tomorrow, I am going to see if I can get out ALONE in my wheelchair! The start of a new revolution!

Wendryn: Yes, it is amazing, but now I am like, "Oh my, look at all the stuff left undone, I have to push myself TWICE as hard." Yeah, not brillant me. That's why I had a Grand Mal and sprained both wrists, pulled one shoulder, and a hip and some lower spine muscles. took me 30 minutes for the pain from typing to be beaten into a dull roar from the sprain ("me so Smart!"). Try to remember Beth, you still get seizures, you still get pain, this helps you, it is not a "free to go wild" pass.

Neil: I will try to get that glider ride in, and this summer too! Fifth anniversary - geez, I thought I was optimistic but when you say things like that I react by going, "I said I'm going to LIVE....I sort of thought like a YEAR, not FOREVER." But why not.

Gaina: yes, it is all about self praise and getting people to look at my breasts! haha!

I want to do that piece, I have most of the newspaper articles, I just need a day or two to put them together.

Maggie: I hope you are resting up, and better now. If you think I am going to believe "Was in ER, but ALL BETTER now" well, I'm not. Take Monday as sick day, I KNOW it hurts you more, but it hurts me to know you hurt, and I don't want to see this pattern every week. Please, for me?

Dawn: I knew you'd like it! I still have the pain but right now it isn't screaming quite as loud. But if I keep pushing myself into big old seizures every few hours, that isn't going to last. Do you think it is time to learn my limits - not like normal people limits but at least SOME limits, like not do a 10K training wheel tomorrow? Wait until the sprains I made today heal and do it on Wednesday instead?

Sharon: and THAT is why I am scared of the Rhumatolist becuase right now they are not sure if the anemia is my secondary or (whatever the word for third) is - I mean if autonomic failure is A and that is autoimmune, what is causing the nerve destruction, which might be autoimmune B, but which is causing the anemia? The seizures are part of vascular issues and oxygen issues which is autonomic, but the peripheral neurophathy doesn't fit the MSA or AAN pattern, everything else does.

So you have MORE diseases. Ah no. See, if this is some of what they find doing RANDOM searching, what happens when they are systematic (on Friday my GP was like, "She should be tested for AIDS" Linda: "that would be the third time this year, and how exactly is she getting it?") I mean, I think I have been tested for Celiac twice, Lymes a couple times, Malaria, and heavy metal poisoning. That some things (like adrenal tumors) actually show up, but then are dismissed to continue with the, "what test can I think of next, let's do Lymes disease again!" Basically, I believe, follow the evidence of exclusion - Try treatment based on what two to three experts believe (AAN) and see what happens, and THEN move on, don't just stab randomly around trying to prove it isn't! Sorry, bit of a side track. By the by, I found out why Lupus is called Lupus yesterday and went to bed fuming, GEEZ, they really need to leave the superstitious naming behind, maybe!

Frida: Thanks, I go look at that.

Laura: Well, I seemed to have, with pain and all, a lot of reasons to die (and the whole peer pressure thing, head of Beacon wanting that DNR from me....). so now I am going, yup, living (which is why I figured I was going to die in my sleep last night or tonight, as I was 'asking for it')

Cheryl: thanks, hope there is a noticable change