I'm ill. I keep on as I have and I die. So what now?

Okay, let me try again. I am sick. See, I’ve never had a problem with accepting that I have limitations. I have had limitations all my life and my first thought in both Wheelchair Boxing and Badminton was “Okay, this is a BIT more to overcome, but think Beth, how are you going to wipe the floor with them?”

I wanted a PLAN, ideas on how to train MY way, do things MY way. And so I had some conditions, fine, I would research and then figure it out MY way. So I have never said I didn’t have conditions, like Raynaud’s. In Seattle at REI, after this woman went on about her life is “DIFFERENT” because she has this CONDITION called, and I finished the sentence, “Raynauds.” And I pulled off my gloves which got a “OH MY GOD!” Hey, what, they don’t make purple jellyfish looking hands where you come from?

She then told me, in all seriousness that I have to be ‘CAREFUL’ because I could get frostbite. I pointed to my finger which has the worst circulation and said, “You mean like this here.” And she just sort of stared at the finger and me. “It’s frostbite, that white bit, turning grey, that’s frostbite.”

She was doing the “But, but,” and I was like, I know and that is why I wear thick gloves INSIDE your store. I went out today for an errand and had frostbite for an hour, ow. She was also the one who after another “OMG!” when I asked if her feet or hands turned black, leaned over and asked, “Are you….wheelchair bound?” Um, no lady, this is my titanium leisure chair.

Doctors have no problem with the fact that I am very, very ill with many diseases. I think there is a file with about 8 to 12 diseases listed on there. They don’t think I am making things up. The problem is that I am a ‘complicated’ case which means they would have to take this thing called ‘responsibility’ and so, “Nope, not my inch!” No, they don’t deny I am terminal, not even the top neurologist would commit to saying I would be alive in a couple years. I have an unknown autoimmune disease doing things which are sort of strange and ideopathic, but which produces autonomic failure. There are only four known direct causes of autonomic failure (there are indirect causes like, when your entire lungs fill with cancer, it causes autonomic failure of your heart due to overloading the system). Of the four, I don’t have one called POTS, so that eliminated leaves the fast terminal one, the SUPER fast terminal disease or the delayed terminal disease. I also have other autoimmune disease and other idiopathic (doctor speak for “What the FUCK? I have no idea!”) conditions/disease presentations which could cause my death.

So I am dying. But to me, being told that was like playing able bodied people tennis in a wheelchair and winning; if I pull off living (winning!) then I am kick ASS! So while I do have a problem being terminal, at least I can be busy: plotting my decline, coming up with plans, trying different ideas. Only now, I am tested, there are blood tests ordered but no plan for treatment, just making sure different doctors don’t get sued. I can’t get a specialist or a GP to prescribe me seizure medication so they give it to me at a walk in clinic, pain meds over the phone. Between my life and “cover thy ass” we know what comes first. Or as one medical person said, “Exactly how HIGH does the stack of dead bodies outside of Victoria Island Health Authority (VIHA) have to get before they DO something?” Currently, I can’t hire my own care workers because the grant, CISL, hasn’t been raised for inflation or anything else in over a decade. 19 year olds can earn the same per hour sitting in the six week course at Beacon which will let them catheterize me, decide the use of life and death medication and use my feeding tube; once they START, I can only pay 55% of what they earn at Beacon, whether they are good or bad. VIHA, after a promise to raise CISL and nine months of negotiation now says they haven’t had enough ‘complaints’ to make them believe the pay was too low. Let’s see, trained medical personnel on CISL get $11, people serving donuts in this town get $14.55, heath AND dental. I guess that disabled woman who smuggled an illegal alien to SLEEP in her closet to try and get home care under the CISL grand budget wasn’t enough PROOF (real case!).

Except now I am ill, so ill, I can't be busy anymore with planning on beating dying. Linda over on her blog, A Girl's Gotta Fly, has just posted about the oxygen I am on, thanks to you. And other things (I can't read her blog till she gives me permission in case it is medical and stuff, but YOU can!) about our life. Please read and comment (after reading ME of course!), as it is hard for her to write these things, hard for her to have to open up, and she needs encouragement too.

So here we are, take two: I am sick. I may say I feel bad today, or that I have this disease or that I am dying but I don’t admit that I am sick. I will always be sick. I have worked the last three hours in extreme pain with triple my pain and heart medication. That’s because I went out today after my ‘fun with electricity’ yesterday. I have crashed to earth. "Mission Control: This is Elizabeth McClung and I am going down." There is no plan, I almost died just over a week ago, I couldn’t sit up unassisted yesterday and I don’t know if I am going to the hospital tonight. I am sick. And tomorrow I will be sick, and the next day, and the next. There is no beating this. I am living in overtime. And I don’t have a game plan.

Now on to part II: I need help. I am fragile: I had two breakdowns yesterday. I can’t just throw myself into something because….I am sick. It is snowing or raining outside, I get frostbite in a few minutes and I am sick. Currently I am back to believing that I am non-human.

I want to be a great friend, I want to visit every blog, I want to know about every life, and I want to empathize with you, listen to you, solve your problems, but I CAN’T. And I don’t know how to do that and not be so BAD, that it makes me want to claw my face. I need help, and I need caring, and I need to get better IN the head, so that I can regulate my body and live longer. Because I am going to Hawaii in April/May, I am going to start trying to sell stuff to do that and anyone who wants to come is invited (see, that is my ‘As long as I have a plan, and never sit still, the pain is just ‘training pain’ coming back to try and take over’).

The problem about asking for help, is that it is a lot like having a high school crush, you like this girl, you moon about forever, thinking you are sort of subtle while really everyone knows (or all the girls know, the guys are too busy hitting each over the head to figure out why girl X just burst into tears). The problem is that there is that moment where you have to say it, “I like you!” And then see what happens. And my problem is that I am saying, “I need help” at a time when people are depressed because they are post-Xmas blues, they are depressed because of recession or reality TV. I don’t know why. And I am not asking to be SAVED, to have someone rescue me. I am saying, I am out here in the wilderness, and I don’t know what to do. Normally, I would take some time off and over the next nine months or year come back to full strength. I don’t have that. So instead of keeping between me and my therapist, because I don't have the TIME, I AM dying, so I posted about it, spewed it all over the net and now I am saying, “Yeah, I am kind of screwed up, can you help?” Please, PLEASE, don’t do what certain parental figures often do and tell me what I should do, or should have done, or if I had done I wouldn’t be in this mess. AHHHH!

So, lets say that she takes the gift of chocolate, then what? I don’t know that part either (If no one does then I guess I pretty screwed!). Cheryl is pretty busy taking care of Linda and dealing with the medicos. And when I, the avenging angel of death, am having hissy fits and meltdowns every six hours, well, that’s not pretty, and that’s not something I want to last (and with my fragile condition, it won't, I'll be in the hospital by weeks' end). Now see, in my OLD mode of operating, I would take my life, put it on the line, call out death and have a duel, because that is the way I am. Someone said to me, about how impressed they were at what I did but to risk my LIFE? I was sort of puzzled, because isn’t that the point? Yes, if I go to Hawaii, I risk my life. Going to Seattle risked my life. We went to Tim Horton’s and had a little incident and Linda had to use her ‘command’ voice to stop people from getting an ambulance. If I want to LIVE, I need to risk my life.

So what does this new life look like? I think I am supposed to rest and then find out if that makes me feel better. I am out here, no net, no back up, but also no clue. See the problem is that here are a few things I don’t have: desire (I desire very little though I found a new manga and put it on my wish list – it won a REALLY big award), lust, anticipation, looking ahead, joy, innocence, peace, contentment, rest, relaxation. So how do I get those? I think Linda has this idea that I will return to my childhood when I had a dog and spend time in the flowers all full of joy and innocence. And while I would like that, when you have to sleep twice a day and have the nightmares I do, it is hard to wake up and have that innocence. Or with the chest pain, to have this idea of ‘rest’ that doesn’t include the fear of being in hospital with a LOT of tubes coming out of me. I proposed MY idea of what I should do, which is to train minions like crows (they follow me too!) to like go and attack people. While I look on from my tower. Linda says this is disturbed. I tell her that I AM disturbed so that makes it okay. She says no.

I was to have the exuberance I used to have, but I can’t because everything I do hurts, everything I do damages me. I want to be here, on a dog sled, fulfilling one of my life dreams, doing the Alaska 1000 mile dogsled race (won by a woman for YEARS! YAH!). That dream isn’t going to happen now but I want that look on my face again, the whole, “Oh yeah, I’m going to get them!” I don’t want to live off memories which are quickly disappearing (I remember none of the 10K’s or most activities of this year, even if I still have unhealed wounds from them), but some new thing to be excited about. But I can’t right now, because I am broken. It is just that which I am trying to fix. So I look like this instead, looking ahead, fearful, uncertain, sad, wondering if all good things are behind me.

I want to be the person who is out finding joy in falling stars, who has true innocence renewed. But I need help. I do need a plan, a program. Right now all I have is that I am going to try out doing some small shopping online, trying to find something on Amazon.com that isn’t for the Postcard Project, that isn’t a gift for this person or that person, but something just for ME. Can I even buy something or use a gift card just for me? I don’t know, but if I can find that feeling, that desire, that joy, even anticipation, then maybe I can come back, back to normal. Which isn’t perfect, it is about having things go wrong, I mean, I do have a lot of diseases, and there will be little home problems (I wish I had this one!), but to be stable mentally. Sure, I might be a bit off in the head or prone to OCD, or overly emotional due to the autoimmune attacking parts of my brain, and due to seizure activity, but I will think that I am part of the human race.

I went out today because I made a promise and I keep my promises (if I can only remember), to get a certain comic for a reader here, Yukataonastick. So I was in a comic book store and I talked. Linda said I am the greatest liar when I pretend, for 20 minutes that I am perfectly fine, then pay for it, for the next six hours or more. Well, I was doing fine and talking to a girl who I had an inkling might be on our ‘team’ as it were, when she talked about playing rugby in high school and how great that was as when you all fell down she got to touch lots of breasts and no one suspected a thing. Dudes, take note, that kind of statement is a sign you are with or are chatting up a lesbian or bisexual, NOT that you have similar interests (though you do!). Well, after some more talk and getting the comics, she says suddenly to me, “Your tit is showing!” Now, I was wearing a new top from Torrid or Hot Topic and I had put the jacket half down to give my breasts some ample chance to show off but wha? I looked down, no, the top is still covering my bra which is covering my breasts. This girl leans over, as I wonder if this is my discovery of a third nipple and will it lactate, and adjusts…..my necklace. Apparently the part where I attach it had come around to the front, so she adjusted the necklace for me. I asked her if that was a technical jeweler term and she said it was, which means it WASN’T the most blatant lesbian come-on line of all time. But then again, she did lean over and adjust the necklace. I have to admit, worrying where my clasp is on my necklace when I have chunks of hair missing on my head and look like I wheeled in from a nuclear disaster tends to be low on my list.

So, let’s review okay? This is who I see myself as. Yeah, things get to the worst, and I will take you on. Yes, I am kick ass. I don't care about the odds, I am the one who is going to meet you and take you on because all you can do is give me pain and that heals, in fact, I’ve been hurt so often I heal abnormally quick. Or I did….. But the reality is that I am not a person who can take on life that way, or problems, and so I am this person, not sure which way to go, a little scared, in a place which seems a lot more confusing. I would like to find a way to figure out how to restart. Which pain is making difficult, so if you have like some MORPHINE and don’t mind breaking rules that might get you in jail, please send it to me (if it crosses state lines it is a FEDERAL CRIME – big time!). I want to look for a while like this, resting, calm, caring but also willing to be cared for(yes, I get the fox ears too, and the cute pet, why not!).

How does someone who is 6’4” and usually weighs 200 lbs or more (that’s muscle buddy!) and picks up 100 lbs easily go to being a person who is well, weak. I’m not girly, but I am weak, I am model thin, I am model light, I CAN be carried around, including my chair by a guy or two. I can be carried back into my chair once I fall out by one person. I am not used to that. That’s what I DO, not what happens to me. How do I ask for help and emotional support, and help in keeping myself believing I am human when I am the one who is used to helping others, BECAUSE I have ALWAYS known I am not human, that I live only to save those from ever becoming like me. I want to be there, because how can I ever want anyone to be me? And I have to let that go a little and find peace. How? Who will help me?

And then, as I find a new way, a new path, to surviving each day as someone who IS ill, who is never going to get better for the most part, who is always going to get a little bit worse. But that doesn’t mean I can’t find my own strength, or that I can learn to lean on the strength of others. I just need to let go of doing it all myself. I hope, I can find the peace, the anticipation, the excitement, the joy inside me, and use NOT my strength, to make myself ill proving I CAN do X or Y, but to accept the strength of those waiting to join me (like the picture). So is that it, is EFM dead? No. EFM has learned there is more than one strategy to fencing, you don’t ALWAYS have to charge! Sometimes, you wait until they come to you, let them do the heavy lifting before you act. Am I going to risk my life to LIVE? Hell yes! Am I going to risk my life just because it is possible? Yeah, I am probably going to do that too. And sometimes, I might go and do things that aren’t particularly smart. Just this time, I have to realize, if I don’t learn the R word (relax, rest, etc), then I will push myself right into a crematorium. Yes, do the thing and then rest as long as is needed to get up, with little advances and help from others, and start again. Because life IS the only game in town and no way I am getting sent off permanently because I am too thick to change. I just need some help.

Secondary Raynaud's, circulation, socks and Sock Dreams

Now that my postcards are done (37! And the majority or work including stickering done by me! Me! Me! Me! – the one that just had a three hour nap!), I want to talk about the change in seasons and one of my conditions: Secondary Raynaud’s. (I usually spell it Reynaud’s but hey, not perfect).

Raynaud’s can be Primary and Secondary; and it turns out there are lots and lots of causes, including Anorexia. However I was Anorexic off and on for 13 years and never got it. I did however get it through MSA. A lot of my friends have it through Lupus. It effects your extremities, or should, and here is a nice picture a guy put up recently to show the various flavors or progressions of Raynaud’s (subject 25 years old).
One temporary cure for Reynaud’s: pregnancy, which causes increased surface flow. One woman where I play badminton has Primary Reynaud’s on her thighs but not her feet or hands. Go figure. As you may have guessed from the pictures, it is an exaggeration of the vagomotor response to cold or stress creating hypoxia (oxygen deprivation). He seems to have it in his fingers, but not as much in his hands. Some people have hands, some go the EXTRA mile!

The thing for people with primary Raynaud’s is to avoid triggers like emotional stress, cold or vibration (apparently people on jackhammers will have their hands turn black due to this if they have Raynaud's; this happens to me on days when I am tired in about 120-150 seconds from the vibration of TYPING!). Ironically, you can say, “Avoid emotional stress” or even “Cold” but unless you have a condo in Arizona or a lot of good drugs, not going to happen. Also smoking is a cause (COPD anyone) because the less oxygen that gets to your extremities, the more funny colors they turn. This is a major problem for me because COPD people seem to be the number one people on oxygen with extreme secondary Raynaud’s (like blue fingers and needing to be on oxygen all the time). I do not have COPD, I just have an autonomic system which is supposed to convert oxygen in my lungs but sometimes 'forgets'. This means I have different needs for my oxgygen converter (we are just waiting on Blue Cross now to approve the new MSA friendly oxygen converter instead of the previous COPD friendly (and loud!) converter they had approved.

First while 10% of people with COPD DO NOT SMOKE (how hell their life is, everyone assuming and blaming them for 'doing this to yourself!'), smoking is still the number 1 cause of COPD. With COPD the inflammation of the lung tubes has DESTROYED the upper parts of their lung tissue (the alveoli) which can no longer convert oxygen, and they need to have higher concentrations of oxygen to get to parts of the lungs where the tissue is not inflammed and where it can convert. Ironically many smokers with COPD will continue to smoke.

White finger Raynaud’s is also known as FROSTBITE. Your finger will turn white/yellow then white and you need to put it in warm water. For reasons I don’t understand yet, my circulation is VERY compromised by the degeneration of my vascular system.

This is how compromised: I get green hands (blood rises to surface but can't sweat) which bleed internally at 24 degrees to 26 degrees Celsius (75-78 degrees Fahrenheit) and is the start of heat stroke. But I also get frostbite at 14-16 degrees Celsius (58 to 61 degrees), yup, WAY above freezing, or even at warmer temps when exercising outdoors (I guess the air flow increases the cooling effect). The difficult is convincing people, like first aid newbies at end of a race that you have three fingers on one hand and two on the other with progression into the second stage of frostbite (from ‘frostnip’) during a sunny day in the low 70’s. I also getting severe frostbite simply sitting still in some houses, depending. Can’t say why. But spend a lot of time with hands of warm water. Yes, I AM the Palmolive Commercial!

Back to Raynaud’s, it is more common in women than men and affects 5% of population, however only a smaller percentage are NOT related to cold. When hands get cold, the arteries move blood to the surface to prevent loss however “this normal body response is intensified by the sudden spasmodic contractions of the small blood vessels (arterioles) that supply blood to the fingers and toes. The arteries of the fingers and toes may also collapse.” The ‘attack’ goes usually through three stages, white, blue and then red. It says it may last to several hours. However, for someone like me with Secondary Raynaud’s, make that “all waking hours” and change white to ‘mottled back of hands spreading up as tired to shoulders’ (indicates a loss of vascular control)

Number one cause of secondary Raynauds is Connective Tissue Disease, according the Medical College of Wisc. I am guessing that EDS is one of those ‘Connective Tissue Diseases’? It also shows up in 1/3rd of people with Lupus. Some of the ‘associated’ medical problems with secondary Raynaud’s? “Painful ulcers and gangrene are fairly common” – also people with Raynaud's with connective tissue disorders may have problems swallowing. Wow, gangrene is COMMON? Sounds fun.

“But Beth, I’m bored! So much medical talk!” Okay, fine, having the arteries in your hands and feet collapse and then turn gangrene inside of you isn’t enough huh? Well, basically the solution is to….wait for it…keep warm. (unless you can’t sweat and are heat intolerant!). Seriously, this is where Socks come in. Because as Linda says, “Them parts you don’t feel won’t be your parts all the time if you don’t take care of them!” Due to nerve loss and Raynauds, I have the same problems as individuals with diabetes as diabetes (which causes 15 times the risk of lower limb amputation) creates peripheral neuropathy (CHECK!) and vascular disease (CHECK!) – so ulceration, which can be unfelt turns to gangrene and hey, off comes a toe...if you checked recently, otherwise...think higher! By the way, amputation is considered BAD.

Another problem (which doesn't make keeping my toes any easier) is that with Raynaud’s, particularly secondary Raynaud’s, your hands and feet (or in my case my forearms as well) simply don’t heal. I have unhealed knuckle injuries from August 1st and when I jammed a finger in boxing, that took over three months for the internal injury to even come close to normal. So what to do? I don’t know. I know one person that uses superglue to close up the injuries as they occur. However, for people with Raynaud's over time scarring can occur on the tips of fingers and toes.

What they don’t mention is, if you have no blood flow, particularly to your feet, the toenails fall off, or loosen. I myself, what toenails I have, have not cut them since April I think. If the blood doesn’t get down there, how is the calcium supposed to? I am guessing this will probably, over time, make the small bones on the toes have less density too (that is only a guess).

For me another problem of the Raynaud’s is getting a oxygen meter reading. The more fatigued I get through seizures or heart problem, the more likely my fingers or hands will be blue or purple or black. Oxygen meters like the hospital use are generally used on the finger (though I have heard there is one for the ear - no, not a pun or joke). Of course, after the 10th time the nurse comes over because I am registering NO OXYGEN, they just turn the alarm off. Hey, no blood to the extremities, means no oxygen either. Besides the issue of gangrene, for me, since Raynaud’s is supposed to be limited to the hands and is not for me, it progresses up the arms, all the way to the shoulders. That indicates that there is vascular instability and potential hypoxia (oxygen insufficiency) through-out the whole limb. And since the shoulder also happens to be where the major blood flow to the brain is, I try to keep my Raynaud’s at about the level just above the elbow, no further (or my brain get less oxygen...this is considered VERY bad for brains.... unless running for public office).

Whether you have Raynaud’s or not, many people with disabilities have what I have noticed is a “intense sock fascination” (sock fetish anyone?), because whether a para or a quadriplegic, diabetic or another form of peripheral neuropathy, keeping your feet warm is important. And while you CAN do it in your grandma’s socks which would match your outfit if it was Puce with Yellow and Orange, many instead go to the Mecca. Yes, I speak of Sock Dreams.

Now whether you are giving in to a bit of whimsy (and sexy) around the house, or going with the preservation of each and every toe, Sock Dream has your answers. And for those women like me who have size 11 or above, Tall Girl out of the US or Long Tall Sally in the UK offer long footed, functional winter sock wear. The thing about Sock Dreams is that you don’t have to stop being goth or even funky as you have a selection from Sea Turtles (????) to BATS! And of course, there is no reason not to keep going with your fetish wear if you want to have a Alice in Wonderland with a bit of naughty to your Mary Janes (I’m talking socks and shoes people, stop dem imaginations!).

I do like the lace with velvet bow mid calf slouch socks but the women’s only go to 10 – which drives me over to the 'mens' section. And quite honestly, showing off socks with super hairy legs is NOT the way to sell to me (oh another feature of Raynaud’s is that since you have diminished blood flow, the leg hair at your ankles and then working all the way up simply DIE and disappear! Were you ashamed of dark hairs on your upper knuckles…worry no more, as that is GONE, along with a fingernail and instead you have a dark sore that won’t go away….that is if you live where it is WARM. If you live where it is COLD then things REALLY get interesting – come on people, cough up the Raynaud’s stories!). But I can still stay goth with these Spider Socks in size 11. However, since I have a phobia of spiders, the periodic flipping out and dropping heavy objects on my feet to kill the spiders I see there is a big drawback to this sock!

The difficulty is that my feet have so much vascular degeneration that I need very thick socks. Plus I need a blanket or two because a) losing 60+ pounds so not any fat b) Don’t feel them except an ache sometimes which feels like daggers stuck in my joints and c) I bleed almost constantly into my feet from my screwed up arteries. On the other hand, so far…no gangrene. I sometimes get pissed at new night care workers who don’t want to tuck in my feet and then tuck in the extra blanket just for the feet, so I ask them to instead sniff around there to see if any gangrene has set in. Suddenly tucking in blankets don’t seem like such a chore. Yeah, one or the other, get the picture care workers?

So, if you can’t talk about Raynaud’s, surely you must have some favorite socks. And of course, how could I talk about socks without mentioning the “loose socks” of Japanese schoolgirls (or one SLIGHTLY older Japanese obsessed anime hair girl in Victoria). Problem is that they are often confused with “leg warmers” of the ala 80’s comeback (which must make genuine dancers want to hit women posing around in them over the head). I also like some ones with red skulls on them (and these “black widow” ones, fit my personality!). But they are often too thin so I wear them over other socks. Or my care worker help me put them on (add big foot full o blood and poor digit control and end up with need for a little assistance!).

I would like to get further examples of secondary Raynaud’s as so far no one, including the people at the hospital have seen it progress so far AWAY from the hands, like up to the bicep or shouler. But then people haven’t seen my version of Multiple System Atrophy either. But still, like to know I’m not alone (be that Raynauds OR sock fetish!).