Obituary’ or The one left behind: The Booth Gardner visit.

In many movies, I think of Mad Max, or Platoon, where you see a main character lef behind while everyone is leaving, pulling out. They have no choice. There is literally a visual sea of the ‘other’, that destructive force we fear as it seems to know only pain, fear and death, closing in. In Platoon, the character, shot in shoulder, is running with over a hundred enemy soldiers after him. The Huey helicopters, having risen could look down and see him running, running, shot, falling, up and running again for the landing zone.

In the same way in Mad Max films, having used himself as a human decoy, the Mel Gibson character is shown, exhausted waiting as those who have been chasing close in. He looks out, seeing the plane, or convey getting away, and the whole stance says what has been said in so many books and movies: “they aren’t coming back....are they?”

Regarding Booth Gardner. In the reverberations which will continue for some time to come in my life I stand on the edge looking out and know that ‘they’, modern medicine, the advances in science, the doctors and specialist, they aren’t coming back for me.

They have people they can save, and they are going to them.

I never really believed, not REALLY that there wasn’t some cure or specialist out there who could change my condition, they just had to want to. Yet it is always different when you hear from the white coats.

I am sorry.

In going to Booth Gardner I carried your compassion, your best wishes, your donations, your kindness and the best hope of both of us.But before going to Booth Gardner, we made one last attempt to get Vancouver's head neurologist letter which Booth Gardner did NOT have and which neither my previous Victoria neurologist nor my ex GP (Jimmy) could find. It had the nerve conduction tests and other data so we asked the ex-GP's admin worker and suddenly it WAS found, in his file no less (he was away on vacation). We got it the day we left Victoria to go to Booth Gardner.

The letter had in it not only extensive diagnostic information, but an order to begin the IVIG treatment which I had been trying to get for two years, as anecdotally it was one of the few things to stop autonomic failure progression. After the nerve condition the IVIG had been approved.

The letter was a year old.

Last year: last May, the Victoria Neurologist and the GP were instructed to created an autonomic failure baseline and then administer three to six months of IVIG. As this treatment was the best chance for both autoimmune an non-autoimmune diseases of autonomic failure. If autoimmune was discovered, or the baseline showed a slowing, stopping or improvement, then I could continue to another medication or stay with IVIG, depending on results.

This letter was never shown to me. Instead the Victoria Neurologist and my now ex-GP (Jimmy), in daily contact, told me that taking a baseline would NOT lead to treatment (the neurologist said this to my face, it a session we recorded without her knowledge). She had previously told me that the province would NEVER authorize IVIG as my problems were ‘in my head’ and worked to have me put into a locked ward instead. After I made a formal complaint she was removed from the case and the opening for the locked ward disappeared.

My GP, Jimmy, however for the next 11 months, not only had the letter but twice pulled it up on his computer to read sections to me (but never had a copy for us). He also during this period refused to refer or authorize all diagnostic care, all specialist referrals, including the many, many requests for a neurologist. Nor the requests for endrocrinologist and refused to treat the anemia or thyroid, or even test the hormone levels (as the medication required every 6 months for liver function tests).

I now have a GP I have met once, and I need a neurologist referral, a baseline test, and then IVIG treatment. In the Canadian system that amount of referrals will take between 11 and 14 months. Would I already have received IVIG treatment having a neurologist a year ago? Yes, I would have had at least six months of treatment by now.

Even if somehow the treatment could begin tomorrow, I will NEVER regain the nerves that are lost, never be able to leave the house without an oxygen converter as my lungs are failing, I will not have the extensive brain damage reversed, never again the same in reserves nor will I be able to take a normal dump for the rest of my life (oddly rather important: don’t take one for two weeks and see if you agree?). There is a year of permanent nerve damage. Last year, I was one month from my Japan trip, a trip which Linda said a few months ago, simply could NEVER happen again, in my condition.

My GP, the person entrusted for my care, told me I would only receive treatment if a specialist told him what to do. A specialist told him to give me IVIG. He did not. Instead he told me he would only give me treatment if I went to the US for diagnosis. The province felt that I had a serious enough condition to spend $18,000 and perhaps more to TRY and save me. My GP ensured, by not allowing a neurologist referral that no one else would ever see this letter (as if I had a neurologist, the letter would have to be forwarded or they could contact Vancouver themselves).

That was what we read in the Van driving to Booth Gardner the day before. The pictures of me smiling at different races, races I don’t know if I am able to finish THIS year flashed on my screen saver. A year sometimes makes a great deal of difference.

At Booth Gardner, a complete history was taken as well as review of the tests and this ‘new’ letter. Booth Gardner is NOT a center for simply autonomic failure but rather a Parkinson’s center for MSA. What they could tell me is this: I did not have MSA (or a variant they were familiar with). I have central autonomic failure. I also have peripheral autonomic failure. It is not known how that is possible but it the facts. I also do NOT have POTS which is the non-lethal form of central autonomic failure. I also have peripheral neuropathy (progressive) of which there is no understandable connected cause. When asked what could cause such destruction the head Neurologist of the center said, “Heavy Metal poisoning?” (Could you PLEASE stop sending me liquid Mercury cookies!) which is like saying ‘Radiation poisoning’ as both don’t damage only the Axon, they simply warp the DNA, eat the nerves and wreck damage on a level beyond predicting. I have not, to my knowledge, been wearing my Cherynoble earrings.

The Neurologist in BC who saw thousands of people with neurological condition and a few with autonomic failure said it was not DNA related, and unknown if auto-immune related. It could be just ‘one of those diseases’ like Lou Gehrig disease/ALS was until it had a name. Why do I get it? Why me? Who knows? The head of the center which dealt with thousands of people coming with autonomic failure each year could tell me what it was: something which should be impossible – both central and peripheral autonomic failure, much less the peripheral neuropathy. I had the lethal kind of central autonomic failure. Indeed outside of anecdotal evidence that IVIG works on some people (best with those with AAN) the ONLY hope for autonomic failure are those with MSA-P, who have a 5% chance of extending life expectancy. She felt I needed a referral to a specialist to only rare autonomic failure cases and is giving one. I pointed out that at the progression and the types of autonomic failure left, that I was not only terminal, but rapidly terminal. She agreed that ‘those with autonomic failure (of my type) had a shortened life expectancy.” But again emphasized that I did NOT have MSA (or a variant she had seen before in her thousands of cases) and I needed to see an expert in autonomic failure (AAN, is often called MSA because no one has ever heard of it; this is what I have believed I have, however I often use MSA as it is easier to understand. She does NOT know if I have AAN). She also wrote that the anemia and thyroid needed to be dealt with. And this was my diagnosis. My Obituary.

All those words but what does it mean? It means I thought for a day and then cried a lot. It means I spent about $800+ to get the answer. The answer is no. I am terminal. I do not have a form of autonomic failure that has any way to survive or even extend life; except for the faint hope of IVIG, not currently studied in trial as not enough people can be collected or live to the end of trail period (usually 6 months to a year) to have a clinic trial. I am progressing at what appears to be 4-7 times the speed of other people with central autonomic failure. By pure stats, I should be dead. Plus I have peripherial autonomic failure, which is unheard of, but I still have both AND the neuropathy.

What can an autonomic specialist tell me? Maybe that someone else has what I have, or that it IS AAN or something new and they call it MSA-Q or they haven’t and they will want to autopsy me. Or maybe like this visit, they will end up with a list of what they know which still ends with “I just don’t know!”

Medicine isn’t coming back for me.

The question I need to answer is how much more time and energy will I spend, how much more money will I borrow, beg, put Linda into debt in order to find out a bit more about these diseases. I think Linda, Cheryl and others would like to at least a consult with an autonomic specialist. I would like what I fought for, and won, it turns out, a year ago: Treatment.

Was the IVIG withheld by the neurologist out of spite? The same neurologist who ordered another MRI because she said nothing would show up on an MRI but something did, so she ordered that section done AGAIN, and a year later it was determined to be ‘unknown.’? Why, why did my GP do it? Out of dislike? It is hard to believe that he would complain about needing guidance when he had it, that he would force us to spend money we didn’t have, money I had to beg publically for in order to get an opinion in the USA only from …confusion?

A year without treatment when I could have gotten better. It rings around in my head like pealing of the bells.

I asked Linda the point of chasing this specialist, then the Chicago program, then the Vanderbilt? She said, maybe for another woman, another generation. I said, with tears on my face, “It’s been over 100 years and they haven’t found anything YET.”

Yesterday was somewhat dodgy, hands black from lack of oxygen, arms and legs deep purple, much like this afternoon: TIA’s, stopped breathing, the usual. I have decided that if there is a visit to an autonomic specialist I will go, but that I want to try and set up the IVIG treatment as soon as possible, within six months if that is possible, even if I have to go to the newspapers. I want to gather reserves as much as I can and enjoy life while I have it. I know that every day, and every breath is borrowed time, that there isn’t any magic cure, or hope. And yet, I do have hope; hope that my life will be better. That I will be able to say “no” to the medicos, because they either accommodate me, or they just wait. Because either I live this life my way, or lose that chance forever.

Like the last 24 hours, there will be more depression, crying, and Linda and I holding each other. (3) But I am going on Friday to Sakura-con, if I am strong enough: I want to buy some art books for the blog. I want to buy some cat ears to send as presents. I bought some presents today in town to send out and when the total came up went there was a, “Wha?” moment. But it is okay, because this might not be what I originally sold my books for but this is who I am.

“Why,” asked the salesperson, “would you send presents to people you don’t even know, or have never met?”

I asked her if she remembered what it was like getting a surprise present as a child. She did. I said that many of the presents were FOR children and some were to help people remember that feeling of getting a present; the child-like wonder and anticipation.

This has been the worst couple of days as I can remember. And there is a lot more staring into space ahead. It is one thing to sort of know that you have a rather horrid death ahead and another thing to KNOW. To know that, no, they aren’t coming back to help or save you and from now on it will likely be more difficult, more painful, and yes, the road that leads to one end.
I AM trying to notice the flowers and the sunshine, and not just that ROAD, that destination. I got a bustier and thong underwear for $17 today! I have an outfit for sakura-con, and I want, I really, really want this to just be a fun time. To be a time I DO remember, one of the good memories of this summer. Since I am Not Dead Yet, and plan to stay that way (your not sending me heavy metal or radioactive cookies would HELP in that!). As long as I breath, I want to LIVE. Okay, I know what I have lost, I know what I am losing; now it is up to me to figure out how to make a life where I gain something, anything: from joy, from enjoyment, from just a smile.

My fucking ex-GP!!! Now there is a man who needs a postcard (and his license pulled, and a cell in the Hague for ‘Crimes Against Humanity’). Sorry, not quite all adjusted yet.

I have a corset, red panties & pose threat to population...also have a GP and the H word (maybe).

Am I in good health? No, actually I am probably in the worst health for a good long while. Cheryl and Linda are rather pissed at me because I keep passing out. I am not sure why they are pissed about that; it is not like I PLAN it. They say something about how I keep talking or doing things until I pass out. Well, sure, who wouldn’t? I mean, if my body gave me a timetable of being unconscious I could get a lot better in scheduling so I was doing stuff and then simply lying waiting for passing out, reading a manga maybe. I think the idea is that I should be reading manga and resting. But there is too much to DO!

I mean, while yes, I do have to go to Booth Gardner, I got my new corset by post today and it is medium junior and a little bit MORE medium (aka, smaller) than the last one I got. So did it fit? Well, the joys of the corset and the female form is that with enough will power it always fits (Cheryl said, ‘well, there are just ribs, I guess it isn’t going to fit’ – I thought, “That’s what you think” – two minutes later it was on). It looks very shapely if I may say so myself, although having a necklace of smelling salts might be prudent. Haha – I brought extra corsets in case I need to change!

Oh, sorry the big news is that I, Dr. Elizabeth McClung was TOTALLY WRONG. Yes, and it has give me a four letter response. After I talked to the guy (Dr. I.) who thought that female doctors’ were the reason (besides Jubilee being the worse hospital in Canada – his statement not mine!) health care here is crap for the chronic and terminal. Dr. I, said OF COURSE I had Lichen Sclerosis. However he was too busy to look. So I had to come back the next morning to the new walk in clinic in the village to see Dr. J. I told her I had Lichen Sclerosis and she said, “No you don’t.” I said, “Well, it might be Lichen Planus.” And she she, no, that is actually more common here, and she indicated the front of the shin. Of course, I am having this conversation sitting up facing her, with my Victoria Secret RED panties (go out in style!) at my ankles. She said, there is a very distinct discharge with Lichen Sclerosis.

I told her I HAVE a discharge, I have anemia, I have Progressive Anemia, I have a thyroid problem, I have an auto-immune disease ergo, Lichen S.

She said, “No, what you have is a severe hormone imbalance, and the discharge you are talking about, that brown on, it is dried blood because your skin is membrane here and bleeding out and your labia are fused and anytime you stress it (like say, taking a dump) you bleed (combined with pus and other fun stuff maybe dead white blood cells).

I said, “Oh.”

She said, “You have a severe deficiency in estrogen.” I explained I was already dealing with imbalance with pills.

She prescribed a cream. And I went, “OHHHHH!” and sank my head in my hands. She took this as a form of humility I think. And started explaining something. Actually, I was going, “Why have I been so STUPID!” (yes, it is possible to be a genius, catgirl or BOTH and still blow it!) I have been asking myself how I could be losing 1/3rd my weight while eating while Linda does and just sitting there, no exercise. And when you add in the hypothryrodism…..? Except I need many probiotics to try and absorb nutrients and I have been wondering if things are being broken down in the stomach at all. Wondering what if all is being absorbed. And I have been taking my estrogen supplements…orally! And due to Dr. Jimmy, no checking of hormone levels in like a year or more. Get the “OH!!!” Yes, I have a deficency and the hormones can’t get there. A cream is better, a cream solves the problem!

I asked her if the skin would thicken up. She said she believed so. I asked what about my hair, it was so thin and falling out in clumps. She said to wait and see. Here I had been complaining to Linda that with my breasts reduced in size I was feeling…..well sexless. I had been having dreams like that. With last recording of Androgen at 0.0 and two doctors looking at me going, “You have a severe hormone imbalance, and a estrogen deficiency.” It makes sense. I will put on the cream. I will see what happens. I have hope.

Of course, there is a problem that with adding all sorts of hormones to me, there could be a slight period of adjustment, where I have imbalance the other way. We have to hope for the local population that this does NOT happen. They need to get the correct level quickly for everyone’s safety!

For me Booth Gardner had three options, a) they tell me that it is all in my head (hey, I’m female: we must have tremendous brains for all the things we can have in our head from M.S. to CFS/M.E. and Fibro!), b) They tell me I am going to die or c) they tell me they don’t know. What this has made me realize is that I do NOT know ALL of the options. That as much as I like to think I have worked out all the options and that I am stuck here in a medical tower, far from help. So maybe that isn’t true (the trained crows who do my bidding are true however!).

I realized that like this woman who I asked, “Why do you KNOW this.” She said quite reasonably, “Well, I have seen Lichen S. and Lichen P and this estrogen deficiency (usually in the very young, the adolescent and the older but still, very distinctive). I told her that was the same grouping for Lichen S. She outlined the difference she had seen in her 30 years of practice in Portland, OR. Oh. Okay. Wait, Portland, like the USA? I asked her if she believe in treatment based medicine? She didn’t know what I was talking about.

I told her I had hypothyroidism but I couldn’t get a referral in order to…she interrupted, “Oh, I can give you syn-thyoid.”

“You don’t need to refer me?”

“No, why would I, vagina’s and thyroids I am very good at!” She wasn’t so great on complex autoimmune diseases, however the owner, Mark, who works in Vancouver and is over once a week is VERY interested as is an older woman doctor who seems to have a fine point focus and we spent 20 minutes talking details and she left saying, “I could talk about this forever, but I have patients.” They renew prescriptions. The Admin person help Linda get the MRI recording of my brain for Booth Gardner. They invited me to be a patient of theirs. I signed up. I now have team of 4 GP’s to return to.

But more important, I realized, as I talked to this very competent woman who worked in Portland that the doctors at Booth Gardner could come up with an EQUALLY logical and reasonable explanation that I have simply NOT THOUGHT OF. Of course, I am on a rebreather mask, and have 70% heart erratics now both showing central autonomic function, I also can’t feel my feet and have loss of nerves in my hands and have overheated 5 times today showing peripheral nerve damage. Even MSA people go, “How is that possible?” I don’t know!! I just live the life. They say autonomic failure and you have either cancer or the PAF/MSA group. But see, I could go in there and they could tell me something logical I never thought, like for example that I am B-12 sensitive, and my initial B-12 deficiency created pernicious anemia which destroyed peripheral nervous systems. And now, anything like my current anemia triggers it to restart, which is why I am losing more now. That is logical and something I never thought of; and they could say they have seen it X number of times. And maybe they have an explanation for the central autonomic failure. I don’t know. But maybe a treatment and maybe I will come home and not feel like a little pawn on someone’s large chessboard where I was the medical pawn everyone was desperately trying to forfeit.

Maybe having that four letter word: hope. Maybe it will make it all the harder if they say what I pretty sure what they will say. But I am not just going now for pain control (my Portland GP can do that), or other things that a GP SHOULD be able to do. Either way, I will leave there knowing my future. And I DO have a future; 8 I am going to Sakura-con, I am going to do the Times Colonist 10K, even if it takes me 2 hours, I WILL do it. Because I have a future; even if it is counted in weeks or days; months maybe, it is STILL a future. But now I have hope: hope that I will for once be ORDINARY, that I will be the ‘easy case’ because they know what to do. And I will have an anniversary of this day; the day my future grew, like a sunflower, high to the sun.

Booth Gardner and how society is openly bigoted against....itself?

First off, as damp or as sunny as you may have it, April and thus Spring is here, I am not another winter statistic, I lived. I made it. And don’t I look ecstatic about it. Is this because I am ‘never happy’? Well it could be that I am just one of the human killjoys that always sees the dark sides to things. Or it could be that I have the mother of all dental visits coming up: Booth-Gardner (Please note, I am not going to BG for dental work, I just meant the same sort of joy you GET from going to get dental work).

I have started to notice recently how much people talk about how horrific and scary death is; how they are terrified by death, how they are terrified by the PAIN most of all, the dying. I find with interest that those who have helped someone go through the final stages of living into death are NOT as afraid. But in a society where saying, “Gays aren’t natural.” Or “Half breed children of a black and a white are not natural” it is virtually encouraged and put into articles in the newspaper that ‘dying is not natural.’ Nor do we condone conversations about how we are scared of this or that ethnic group (well until recently and now it okay to openly talk about fear of muslims/arab/middle eastern descent, an action which disgusts me). And yet, as Sara said, Halloween is when the able bodied openly celebrate against the dread horror of becoming…..US: the disabled, the amputated, those with hereditary diseases or acquired diseases. And all of that open despising and hatred hurts. Turns out we ARE human after all.
Certainly it appears that I am dying a pretty painful death (since Linda is going to BG for pain control). And that I live a daily life which has a great deal of pain and doing things I never thought I would do a year or two ago in order to live. But I do live, because then I get to annoy people. I live for grabbing boobies, for poking butts, and for doing other juvenile actions (with the defense of the puppy dog look and ‘you’re not going to attack a DYING person are you?’ – it appears Linda will!). but seriously, I know that others live a life that has more pain, that they are also dying and with more pain than I; but how do you measure it and WHO CARES? This isn’t pain and disease BINGO and you don’t get extra points if your pain is SOOO bad compared to person X. I generally think I couldn’t handle anyone else’s conditions from fibro to M.E./CFS to RA, to spinal cord injury, to amputation. But I also know that I would, that it would become my new reality. But where do the rest of society get off by not only shoving us behind a veil where only the ‘inspirational’ may briefly emerge but then openly talking about how there is NO way they would ever want to be US! 'OMG! Can you imagine it, being someone like ______ (insert name of reader here)? It would just be horrible, horrific, I mean I would kill myself or have someone kill me.' But as much as you try to hide us, we exist, like the poem, because you did not wait for death, I will wait for you!
What does this have to do with Booth Gardner? Well you see, there is no good option at Booth Gardner and I know that a lot of people are very emotionally and financial invested in BG, including me, but there IS no good news. I tell Linda every other day that ‘yes, I made this all up, I’m sorry, I stopped going to a national circuit tour and the western nationals and the eastern and the world cup, and get those jobs that were begging for 60K+ because I wanted attention. And so I fake all this in order to sit alone in a room for 2 weeks without going outside.” And she whacks me and says, “Stop saying that.” And on the other days I have meltdowns because I CANNOT plan a life beyond Booth Gardner. In answering the questions for Booth Gardner it has become apparent how useless the efforts, which were large, of the last few years were. “Why did you have the same test four times?” They ask.

Me: “Because the specialist believed I was lying.”

BG: “But it is a BLOOD test.”

Me: “Yes.”

BG: “So after they showed this problem what course of treatment did they start?”

Me: (in a small voice) “um…they gave me another blood test?”

I mean, why in the last 9 months have I been tested for AIDS 3 to 4 times, along with syphilis, and other STDS? Why over and over again? Dunno. Why were the nerve conduction tests done but then stopped, not repeated to see what progression there was nor treatment started? Dunno. Why did the side notes of the endocrinologist, which pointed out that I had, as you can see by the handy chart he made, autonomic failure and he suspects an autonomic failure disease like Shy-Dragers, take the neurologists, who said it wasn’t HIS place to say that. Why did it take them over a year to do the test to prove him wrong and that I was making it all up only to write up a report that sounds almost exactly like his. “And what then was the result of these tests?”

Me: “Um….they didn’t do anything.”

Sometimes it seems best NOT to try and think about it. As the Rhumatologist says the last Neurologist should act, the Neurologist says she just does the diagnosis, that the local neurologist should act (there is no local neurologist), nor is one referred. The seizure specialist says that he doesn’t take psuedo seizures and after my GP called him and told him ALL about me, he can say that I have pseudo seizures (with no tests as proof at all!), and that the MRI will come back showing no seizures. So he orders an MRI examination for a 60 year old male with long term high blood pressure instead of a marathon runner and athlete in her 30’s, looks at one section of one lobe for only signs of a massive stroke or bulging veins from high blood pressure (even though longer term strokes than a TIA are noted in the earlier neurologist’s notes). So now he has the proof that the MRI is ‘clean’. Which proves what? That he can drop me.

So Booth Gardner might tell me they have never seen my variation. They might tell me what the doctor at ER who sees many autonomic failures a day (people dying have autonomic failure), that I have vascular autonomic failure (which will kill me). Or they might say it doesn’t add up. Or that they can’t find anything. Which helps me…how? But that is the paranoia of the abuse of the Canadian system, as EVERY page of each blood test has at least one problem on it: liver function, adrenal function, anemia, etc. Okay, so they will want more tests and then want to see me again probably, except how long will THOSE tests take? Nine months, a year? Two years? I am still waiting for my follow up from the heart specialist….

Or they could advise a treatment. Will the Canadian and BC government start the treatment? The top Neurologist said IVIG was a possible treatment but no one wants to be the one signing the line. So who will, the GP? BG could say that they thing I can live longer with treatment X; then BC could refuse to give treatment X. Or they could give it and I could get VERY sick, and BG could say, “oh, well, try treatment Y instead.” They could give a provisional diagnosis, they could say they haven’t seen this. I simply don’t know. I am paying them to look at the tests we have and go, “Wow, it kind of looks like you have…..” But I don’t have a GP. I leave in 40 minutes to interview one. Should my first question be, “Are you going to drop me if I question you? If I bring in a neurological journal article?” Or should I just shut up and be thankful (As it turned out, HIS first statement was a discussion about the paper from the College of Physicians for doctors NOT to drop cancer and dying patients, 'well, thats because there are too many FEMALE doctors, and what use are they (female doctors)? They only work part time anyway....oh they drop by to do a pap smear I suppose' with the unspoken statement that the 'real doctoring' was left for the men to handle made worse by female meddling. The meeting kind of went down hill from there. He has all the connections, he works in the hospital (he called it an 'ancient sty'), knew as I said that I had Lichen Sclorocis with an 'of course', but might listen to BG, not going to defer to them; he is after all a MALE GP - and when he finds out the top doctor in the hospital is female! But he HAS a patient with MSA-p).

See, besides BG saying, “Oh you could have been cured if they did XVZ in the first six months.” What hope is there? They cure me? Linda puts that at 5% or less, and that doesn’t include my ability to sweat, the nerves will always be destroyed, and what about the lungs? The heart?

Meanwhile I have most of society saying, “Oh God, don’t look, don’t look!” Except of course that I look mostly like everyone even though I lose vision every day (neurological problems) – here I am with eyepatch, going on anyway. Behind me, is the list of artbooks. I did two days of research long ago, which could mean several weeks or a couple months, and wrote down the names of all the art books I want to get – because I wouldn’t be able to remember them after 2 days.

The problem isn’t the medical model and I think the social model doesn’t go far enough, because it only includes stable conditions. We have a society where death is something that is horrid and far off, and where pain and living is considered impossible. Well here is some news, if you want to live, you will have pain. If you want to live you will eventually become helpless, dependant, and while you can SAY, “Oh, I hope someone shoots me.” Do you really want to give me a gun so that if you forget where you put the keys, I blow your head off? "No, no, I didn’t mean that, I meant…….." Well where IS the line? You can’t know until you are in the situation. And because no one LOOKS at the situation, or thinks about the situation, we have a whole society who wants to stay at a pain free 19-24. And who is also vapid, shallow and lacking in the insight that being those ages forever gives you. There is a reason there are wise OLD men and women; there is a reason there is the wisdom of living. That what your grandmother told you really was good advice.

Except that I, the woman in my 30’s am the nightmare of the generation of the baby boomers, the openly acknowledging shallow and selfish generation who doesn’t want to have to do anything hard, painful, or horrid. So no wonder they don’t want to listen or talk to me, though most of my VIHA helpers are 20 to 30 years older than me. I feel like shaking some sections of society and yelling, WAKE UP! I am not a living nightmare, I am a human being, equal and as valuable as you. And that so many people CAN NOT even conceive that makes me look at THEM rather funny. Because I scream a lot, because my body does things which aren’t talked about, thus they can’t exist. To sound like a waitress, “Oh honey, you just haven’t even started living yet.” Yes, so many hate themselves, that slightly different life which will soon show up in the mirror. And if a whole society hates itself that much, based on how they hate us; the disabled, the dying, those with diseases, birth or aquired; will they die failing to learn anything about living?

All I can do; so Linda can sleep.

My little world has cracked open, sadly. Linda can not sleep. I work until I drop. I have searched over again for a job (only opening ironically in the military for fighting forces – they already turned me down). Why the job? Because we had a co-line of credit and suddenly that person decided that my disease is a lifestyle ‘choice’ (like a game, but with death as the prize!) This coming from the person one would normally turn to, believe in; the one family member who was still speaking to me in town.

Linda has a good job as a government manager and is working hard to go back to it, months ahead of the schedule of her doctors and the government doctor. She wants, like me, to be part of something, and believes that will, if not help her disability, at least give her accomplishment. Plus her income will increase being off of medical.

The two years of medical expenses which are normally absorbed over a decade or two have stressed us, sucked out our savings, and yet, we try to go on. For example, the postcard project is now covered mostly by donations of individuals, I just need to do the work and Linda and I chip in financially our part too. And I think most know that I work as hard as I can, from waking until sleeping every day. The last days I have pushed myself further, sleeping five hours a night. It is not enough.
The problem is that with Linda’s reduced income on disability, we have depended on budget including a fund for non-covered medication, and the bulking up of medications before we ended up without a GP (ouch). This also includes off the counter pain muscle relaxants, gatorade and other weekly expenses. We knew that costs, particularly in January without insurance coverage, would go above that of our budget, and there would be a dip into the line of credit.We just needed to hold on. These costs, as the months went on, would be paid off as things even out.

Instead, just as we come out of the worst of the costs, that credit of thousands was taken away, and we are left without a safety net. We will try to find one, and another line of credit as with Booth-Gardner they seem to talk about multiple visits. So between my LIFE or a little debt this year (which if I die I pay off with my life insurance on death or if I LIVE, I get a job, or sell a book) I will fight for LIFE. To me, the person's act, while knowing that both of us are currently disabled, is without honor. That’s the nicest way I can say it.

You know that Linda is more than my life to me. And that to see her in pain, in any pain, is unbearable. I cannot fix this in a day or two, I am too ill. I could become angry or wish violence,instead I could do something hard. I debase myself. I will do anything for Linda. So, please, for Linda, if you can give to her/my medical fund (you click the paypal button - down a bit on the right) please help me to help her. If you want stipulation, you can put any stipulation on me you want, and I will attempt to fulfill it. Want me to post a picture wearing Miko on my head: donate and help Linda. All I care about is Linda and helping her sleep. If you want part of my skin, I will send it. I just want Linda to have a security cushion while we deal with this. Please. I said to myself that I would never do this: never ask directly. But for Linda I will do anything. Wouldn’t you for the one you love or your child? Later I will go out begging with a new sign. I am sorry and embarrassed you have to be part of this, and see this. But this IS what life is like sometimes.

Booth Gardner, suicide, living and choices

We have a date for Booth-Gardner, though not the one we wanted, Linda’s post covers that. Which is why I am going to talk about deliberate suicide, life, my and other choices and yesterday. I wrote a blog post yesterday and then realized the post was a lie: because it was all about hope (so I didn’t publish it). Hope is NOT what I am feeling. I am feeling something between frustration and despair. Yesterday was spent, the entire day, doing things that were largely unpleasant, but also needed.

I had to get ready so that I could go to the lawyers and re-read my entire will, ask questions and sign, read my living will, upon which Linda will determine when I get to die, and the power of attorney. I am sort of a non-human legally now. I would recommend any person read any living will VERY carefully as there are many loopholes and since both sides of my family tend to like to kill each other off or tell doctors, "Oh they are in horrible pain, please give them morphine drip to put them in a coma" - I have to be extra careful. The lawyer aghast at the McClung family dinners where everyone before dinner ran around putting their names on things, pencil in one hand, eraser in the other as they erased the name of the sibling and put their name. Then at dinner (my Grandmother is still alive and would be at the head of the table) the siblings would yell at each other about how they put THIER name on the clock first and YOU erased it...etc. The lawyer said, "So, death is something of a silent taboo in your family" very dryly.

From there, Linda’s surprise was that we were going to my parents to borrow their dolly/cart in order for Linda to get the Wheelchair Ramp from Port Angeles. It was an exceedingly painful visit for me. My father had offered to care-give and I accepted, more as a way for him to understand the actual limitations of my body now. Pus Linda put him to work, moving a bookcase. That somehow unplugged my lifeline phone. Lifeline started calling the numbers to make sure I was still alive and my father was one of them. We were notified and plugged the phone back in. Apparently that wasn’t enough, Lifeline wanted HEAR me, know I was safe, so they wanted me to push the wrist button. I wear this bracelet at all times and if I push it within 200 feet of the phone, they sent paramedics. I have done this in an aura when I thought I was alone and was taken to hospital. Lifeline called us, they called my father and Cheryl I guess.

At my parents, my father was away and I watched through the windshield as my mother held on, refusing to release the dolly to Linda while she made a prolonged emphatic statement to Linda. Linda got in the vehicle upset. We had to go home now in order push the button as my mother did not want lifeline calling the house again. The 30 second call was annoying. The fact that someone, for a minimal amount a month wanted to make sure I was alive and safe, and that there was a safety net in place to keep it that way was irrelevant. The call was annoying. It should not have happened. Was I hurt? Did she care? I don’t know. I know that she didn’t care enough about me having my father called to come and check on me to put up with a couple 15-30 second calls. Though it was suggested she hated the reminder of what she has not ‘processed’: that she has a sick and dying daughter. Or as she said, “I did it with my mother, I’m not doing it again.”

My mother’s irritation that someone called her on the assumption she might care brought to me how there isn’t another human being in this city who would come and check on me. About 18 relatives and many neighbors but no one who either cares or wants the responsibility to see if I am on the floor and dying or not.

From there we went to a new walk in health clinic that was taking new patients. They advertised no wait longer than 15 minutes for walk in. It was an hour long wait and then 30 minutes talking the doctor. We will hold off transferring to them until we provide medical records and they say what they are willing to do (specialist referrals, treatments, etc) and respond to a letter of our concerns (like will they follow what Booth Gardner will tell them to do). Also we need to wait until we hear about the palliative program as all efforts, however minimal where I am currently, will cease once I transfer (by the way the palliative is a year long program, you can register up to three years in advance so it doesn’t mean I am going HAVE to die this month). So, now we are waiting to decide medically to stay with the devil we know or transfer with hope to the new one?

After all this I was exhausted so home to sleep and up then again, since now I now needed to break the pro-biotic wall that I created in order to stop the food poisoning several days ago. Between waiting and pushing it took about six hours and brought me to the point of exhaustion where I couldn’t speak anymore. That was a day. My ‘restful’ day.

So Booth-Gardner (B.G.), we have a date and while it is what we ALL have been waiting for, it is different things to different people. For those who want me to live: it is hope, regardless that it is slim and if dashed I will be emotionally crushed. For the doctors here it is direction on what to do, what tests to order, what to prescribe. For Linda it is the culmination of months of requests from DOZENS of places for tests, and mountains of paperwork. And it is a place where I lose my identity, where a life of stability is gone and instead of everyone had accepting my condition, and my degeneration now the medicos will ‘evaluate’ me all over again. Even if there is a very high probability that they will say that I have what everyone says I have: MSA variant (Cost $700). But this time I will have paid a lot to be told for SURE, that I am going to die. Can I emotionally withstand that? Can I deal with all the tests we are going to try and shove in at the last minute for them to tell me how soon I will die….my phobia and yet lots of needles? But this is the only path to hope, right, so I should be happy? Only they don’t promise hope, they only promise to take money. And people forget that I only have a 50% chance at best of living long enough to make the appointment.

With my life of ‘consistency and stability’ I was trying to save money for three things: Sakura-con, art books for the blog and Hawaii. I put up DVD’s on ebay yesterday, as much as I could concentrate and have energy to do and sold one. Last April I promised Cheryl that if I was still alive, I would go with her to Sakura-con. To me a promise is more important than living. To break a promise which has helped keep me alive is an insult to Cheryl, it hurts people’s feelings and that is more important that what I want. Someone depended on that promise, and so did I. I have been saving for some specific art books at Akadot because my memory is visual and so people enjoy the pictures on the blog. I had put up my ski’s for sale and was working to sell my bike to make money for Hawaii, and getting manga ready to put on ebay for Hawaii too.

But in plops Booth Gardner (B.G.) and suddenly I find (on Linda’s blog) that the ski’s I am selling and my bike and the money I have saved is actually for the medical fund. Now while I do contribute to the medical fund from my allowance and a portion of what I sell goes there, the ‘making sure Beth gives a damn about the future so she wants to take her next breath’ fund seemed more important. But it isn’t, or so I am told, compared to the wonders of medicine; which will tell me I am going to die.

Because it won’t be a visit, it will be a lifestyle. I will need tests before the visit, and the doctors will probably want to eliminate the anemia, the thyroid condition and the heart erratics all with follow up tests, maybe every month or every other month to see how their medical choices are progressing, then back for another visit. Time to try for a pacemaker or maybe some sort of treatment for Lymes, or Lupus, or IVIG, or anything that passes the brain/blood barrier as they have ‘had some success with some patients’ and then there will be tests on that and follow up visits. If I live. Where is Sakura-con in that? Where is Hawaii.

I asked Linda today what percentage she gave to me living to reach the end of April, and she said 50%. I asked what had happened to Hawaii, and the money we were raising, the tax refund money, the early filing. There was a long pause and she said that the timing wasn’t right and it would be late summer. “Summer, me, in Hawaii in SUMMER.” She amended that to make it clear it was more like fall. That would be a better time for Cheryl to have a vacation. Better for B.G. too. She got the book from D.K. on planning our Hawaii trip five days ago, and got the news about the date for B.G. three days ago and now we aren’t going to Hawaii.

I am being drowned and disappeared by the medical game that treatment, that appointments are the same as having more life. Right now there is little rest, and my life is NOT ‘stable and consistent.” My night care worker who told me she had ‘lots’ of experience with seizures due to her cousin told Linda yesterday she would fine not coming since she has no real experience with seizures, and hasn’t seen any since she was a child. Not a close cousin then. Plus Monday was her “day off.” So I have no night worker anymore, since I need someone who wants to make sure I am alive and sleeping instead of lying in pain. Not someone who thinks they have to stay up too much and this is their day off after all. My support is crumbling. I feel that E.F.M., that the fragile Beth, that the Elizabeth than needs to be comforted are all disappearing under this blanker of B.G. and the hope it will solve everything so lets just ignore everything until then.

That sucks. Because this isn’t just about me, as so many people have been excessively generous, and I want to thank you again. You have given to the medical fund, because collecting all those test and keeping me alive until I could get a date cost money. We personally have gone in debt further, on this hope of Booth-Gardner. And yet the highest percentage is a frustration that the Canadian Neurologists never did tests Q or R, or did a follow up, or just left ‘ideopathic’ all over my charts (meaning “Fuck! I don’t know!” in medical speak). So they have to make an educated guess and send me for the test, so more waiting, an more into the medico. Then B.G. does a follow up visit to start a round of treatments, and more tests after the treatments (if I am still alive) and then a visit to get an idea of my progress. Do you get the idea? We don’t have that money, and we are selling my book, and wrist bands and t-shirts and trying but I don’t have energy to put on 40 items on ebay (try 4) as having a shower IS my day. Linda is disabled and taking care of her IS most of her day. So we, or rather I will beg; I will beg on the street, when I can, and beg in the blog.

And that frustrates me as I don’t want to do it. These are people who are so kind that they gave me books to read, when I am too ill to move. They made the quality of life better when they had no hope of extension of that life, just because they cared.

But B.G. threatens us with HOPE, or the hope that HOPE of an extended life might happen....except that will cost thousands. Yet already I feel that we have betrayed the people who read here: they thought it was simple, give money and it covers my trip to Booth Gardner (except they forgot the transport and hotel and keeping me alive UNTIL then). So that I am so ill that the government and my advocate say I need a $23,000+ wheelchair or I will be too weak to move. That I need my body supported, my butt supported by a $1000+ cushion or I will have oozing sores, that I can’t feel. Only we can’t get it in the van, because we have to get a ramp: medical fund. How am I to GET to B.G. without the chair, without the other medical needs, of which we are still paying 80%+.

And all I can think is of all the tens of thousands that Linda will have once I die; because in an incentive for govt. managers to stay in government work, they doubled the spousal insurance with NO MEDICAL. Yeah, I am stuck for a thousand or two now, but she will have it when I die. So is it love for me to die quickly, before I burden her with life debt? Is my small stash of money for Hawaii to be taken, my $35 saved for Akadot, to be given instead to the maw of B.G.? No. I am not a machine to work for B.G.

But still, I am seeing what I have worked for pulled away, my art book fund, my Sakura-con fun gone and replaced with needles and the sheer terror of evaluation, since even when validated (that yup, you are dying quick), it never makes you feel GOOD.

Guess what, the NEW doctor I might sign with wants me to go to Bethesda, MD for special clinic there! We went with the Budget Option (in the US, $2,000 or $4,000 IS the budget option). And if they say I don’t have MSA, will they know the two to three auto-immune diseases in my body, the electrical heart problems, the rampant AV nodes (no operation scheduled), the cause of the anemia, the cause of the nerve destruction? Then there is the cause of the autonomic failure; and the cause of the diminishing ability to convert oxygen? Will they know any of this? Or best guess and treat?

So B.G. is good for one thing, at asking myself what I am losing, what do I want: I want to race in the TC 10K, even though that will hurt. I want to do a 5 or 8 K or two before then. I want to go to Sakura-con with Cheryl. I want to write a book. I want to go to Hawaii. I want to see fireflies again before I die. I want to make love to Linda. I want to have art books that I enjoy. Because my mental state is less than 50% of what is was (When I said this Linda only emphatically nodded), I like pictures. The pictures of the last several posts have come from Doujinshi from Japan or Doujinshi (non-commercial artists who publish their books but don’t sell in book store). I think they are beautiful. I want to go to Hawaii! All that is disappearing to (B.G.) and instead of being told ‘rest!’ I read and am told I must fundraise; so much every week. Even if I only have 50% chance of living, my life, though I am sick, weak and confused is to get the money raised for B.G.!

No.

Oh I will go to B.G. and be thankful of every single donation toward my medical fund. But it will not tell me what to do with what life I have. If I have to go to Hawaii alone, I will. If I am the only one to look at art books, stained with tears because everyone is acting funny like I don’t matter as much as the doctors who are to tell me who I am, then I will.

There are razor cuts on my arm less than a week deep. I don’t know why they are there. I know I am a self-harmer but I can’t remember WHY I cut that time. I see the scars of DEEP cutting from a month ago or so, and I can’t remember that either, or the ones before. I used to say that these scars were the story of my battles within written upon my body. Only if the author can’t remember……what use are they? I am wounded emotionally and cry and yet three days later I don’t remember. B.G. I will remember as it has moved in with us, an unwanted house guest. It squats there. In the same way the pain is always there.

I continue to DO, like visiting the new clinic and they have sort of accepted me as a new patient yet…I need to see if the pallative application works first and if it doesn’t, this doctor is a sports doctor and doesn’t believe in unneeded medicine. How does he feel about morphine? Fentynal? How many days and weeks will it take to find out; how many months has it been? How long in pain.

Yesterday I screamed and moaned from the weight of my body on my bed; I was so fatigued that moving me put me in shock. 21,600 minutes when I am awake that I am in pain each month, and I feel every single minute. It has been months since I have had adequate pain control. I scream from pain many days a week. I moan in my sleep; I have fevers from the pain, hallucinations. And yet, I go on.

Why?

B.G. has made me question everything about what it is to BE me. It threatens the work I have done with others to try and sequence; to look forward; to try and WANT things; to feel things, to have fun. I still don’t smile, but I am trying. B.G. put all that, even my lonely isolation in shadow, as it is all now secondary, is the feeling I get, to B.G. After all what is manga when I need medical treatment? When I could have a diagnosis? And I do, and I will go, and I need help to get there. As the new clinic head doctor said, “I am not sure if this clinic has the experience you need.” I replied, “I can assure you, that currently the province of BC does not have the medical experience I require, so that is NOT an issue to me.” What is something to read, or the feeling that might be enjoyment, or joy when I might live an extra six months on the backs and the cost and donations from dozens of people.

I think of those donations and think of the dozens of dinners out, dozens of little trips, weekend trips, surprise gifts they could have, for a 10% chance at a slight prolonging. I can’t ask that. And yet if I want to live I have to. I am supposed to want to live. And I do, but not in a way that makes others deny themselves.
The more I see all that I am and what I and others have worked for threatened by B.G. (which I WILL go for the consult, however terrified I am), the more I feel that I have no choices. Some days the only choice I have is what manga to read, and I wouldn’t have that if not for people who wanted me to have a better quality of life. Choice is the greatest gift. Thus the more attractive a idea, suicide, that would give Linda all the money she needs, to give back to those who cared, to take care of herself, and which would end those minutes and hours pain and give me one choice again. I don’t want to lose Hawaii. I don’t want to lose Sakura-con. I don’t want to lose trying to writing a book (even if I have to re-read it each day to know what is what). I don’t want to lose a plan to see fireflies again. I don’t want to lose the (is it joy?) anticipation of getting a new art book. I don’t want to lose competing in a 5K and being more than just that person whose life is over. And I don’t want to lose the reasons I have for living. How can I do that and co-exist with B.G.?

I asked Linda what she thought was the best way to commit suicide if Liver Failure is so horridly painful (though I bet I WOULD get morphine for that pain). She said she didn’t want to play this game. I said, “It’s not a game.”

This last Friday, death WAS imminent, I came within a breath of dying, over and over again. I was kept alive by continuous emergent care. Moving my body at all put me into a state of convulsive shock and pain which lasted for up to 20 minutes. I literally had to be held upright, while I continued to work. I have two books I would love to do, love to know I had time to finish, love to have that hope, but I guess I am terrified at the cost of that hope.

I want to try all MY dreams. I want to rest and make myself stronger. “Resting when everyone is wanting the action Elizabeth because you KNOW it is what will make you stronger IS E.F.M.” Linda said. I want to be E.F.M., and sometimes that is resting. But sometimes it is not, but trying when there is no reasonable expectation of succeeding.

I cry from the terror from the thought of failing so many people if B.G. goes wrong. I don’t want to use death as an escape and yet, why am I thinking and have been thinking even before B.G. about suicide. I have worked so hard and so many others have for me to remember to think AHEAD, to plan for the future. And just because I am in pain 21,000+ minutes every four weeks, I want to throw that away? Sounds kind of wimpy doesn’t it. I don’t know if you know what it is like to scream, not a short and punctuated scream of pain from slamming a car door but one that goes on and on and on because the pain doesn’t go away. It takes you past the brink of sanity until you claw back and you force yourself to trail off into moans and whimpers. How many screams did that take? How many minutes while you were held down? And I can't take any more meds, that is on all the pain meds I can take. And that is a couple days a week, it gets that bad. But I go on, because living is important, Linda is important, the postcards are important (at least to me), Hawaii is important and I want to FIGHT. I have been fighting with the help, some in time, some in finances of good and loving people for weeks (I think) to try and relearn time, to learn that living and the future is good! That Future is worth fighting for.

I don’t want to betray them, or myself. But I am very, very scared. And I am genuinely deeply depressed. I am tired and a little angry at people wanting me to be at peace, or fly away. Know this, and remember it, not in one thing except unconsciousness from fighting in my life over the last several months has there been a moment I have been ‘at peace.’ I fight, or die. I fight, or give in. And when I fight TO die. That is sick. I want to stop that. I want to fight for Hawaii WHILE I live. I want to love the future. I am not going to ‘rest’ or ‘kick the bucket’ or ‘fly away’ or ‘be at peace.’ While I live, I BURN! Even when I die, I will burn too!

I want to care. I don’t want B.G. to take that away. And I don’t know what to do.