I have yet to see my GP, which I will see at 6:00 pm, so a very late nap for me (the purple/blue Beth). Oddly, my heart rate was elevated for 6 hours yesterday over 100 bpm, at rest. And when agitated, going much higher than that (like 140), which is kind of tiring. So tiring that when I came to bed, I had a small seizure and stopped breathing, and it was an hour and two incidents of mouth to mouth resuscitation before I was breathing on my own, even with oxygen. I got to sleep at 4:00 am and was woken after 8:00 by doctor’s offices, and then every 40 minutes there-after, though I kept giving them Linda as the contact person. It seems that the receptionist for Dr. Atwell-Pope is new and thinks that I am someone else and that I was calling about being refused to see Dr. McClellin (who is that?). Then Cool Aide, called (my GP clinic) and I explained part of the problem and explained about last night begged them to stop calling me. That was at 10:25. Then they started the road construction outside. So I will be lagging a bit for a few days I think.
But before we go on, let us take a nice break and just gaze at these wonderful anime girls (my anime girl post cards arrived, all 25 of them!). See, this is what is really important......ahhhh, don't you feel better? Okay onward!
In case you are tuning in, the seizures which have been explained by Cheryl and told to my GP by the VIHA nurse prompted him to action in calling Atwell-Pope, who said I could only be diagnosed in the Neuro-Psych Ward (and I was going to be admitted under an emergency basis in the next two weeks). This seems a very odd way to diagnosis everyone in Victoria and Vancouver for epilepsy since it only has 10 rotating in-patient beds. Anyway, it turns out that under the UBC neuro-psych ward there are four or five admittance rules, and I don’t fall into them. For instance, I have not had a Psych consult yet which is required before admittance. You can’t be admitted if you are immune suppressed (hand up), or if you have an autoimmune disease (hand up – the head of Neurology teaching and Atwell-Pope’s mentor put in her letter that she believes I have an autoimmune disease which is causing the autonomic failure). Last and most important I cannot be in emergent condition (hand up – like not breathing on my own?), or likely to need emergent attention (hand up!).
Also, looking at the big picture, I have anemia which is getting worse without a known cause. I have an undiagnosed autoimmune disease (let’s ignore the autonomic failure which causes heat stroke and the heart problems and the oxygen conversion). Which means that I need to see someone who can address and test THOSE issues, which will kill me, particularly the anemia, without transfusions or other treatment which is needed in a hospital not an neuropsych ward with their MRI and CT scan. I am seeing a Rhumatologist in less than two months. He can diagnose and treat the anemia and autoimmune disease; which to me is a priority. IF after that, I still have seizures, we can examine how to get those treated (like in the states, or after seeing a autonomic failure specialist). The problem is that everyone is going around talking about “Conversion” and “Disease of exclusion” and I already HAVE a disease of exclusion: either MSA or AAN – both of which have hospital records, expert opinions and test results to verify. Conversion disorder has….no evidence for but much against (like the nerve conduction and MRI tests). Mezei mentioned she did have one patient WITH autonomic function…..but she believed that the autonomic failure was a form of “Conversion Disorder” (this is medically considered impossible).
But the thing is, I am not spending any time more than today on this, besides changing the medical power of attorney so they can’t use my stroke and seizures to say that I am unable to make decisions and thus the doctors need to make decisions for me (they use this for mental illness too – say that your denial of getting ECT, which they HAVE as a treatment in the NeuroPsych ward they are sending me to, is just a manifestation of your illness and that with a few zaps!……). I am concentrating on Postcards, writing postcards and doing a secret fun project because these people will only steal my current quality of life, such that it is, if I let them. Get me to a pain specialist and a Rhumatologist and then, if or when there is time, we will examine the seizures in the USA (or the UK…or Mexico…or Columbia…or Cuba…or India) where they seem to be able to declare epilepsy without needed a psych evaluation or putting the person in a locked neuropsych ward.
So the news that my anime girl postcards arrived means I am in heaven. Only problem is that I want to keep them all for me! I mean, look at them, who wouldn’t?
But this will give me a lot of options for the people who want anime girl postcards and the Yuri lovers and the lesbian and bisexual readers who want postcards (never too late, just email me at mpshiel at hotmail.com with the title Postcard). See, to me, THAT is what is important. And yes, less pain and maybe some treatment, but I can’t control that but I can control this. So I can send out these postcards and make other people happy. I hope THAT isn’t considered a mental illness yet?
Anyway, I wanted the people to read here to have something NICE to look at and to know that I will put little updates but I am going back to writing about disability issues, not just my wacky doctors. And life issues and squirrels and having fun with friends and the life of a woman in a wheelchair. And that is what I am doing right now, choosing life, to LIVE all the minutes I can, by doing what I want and enjoy doing, which is postcards, and emails to people, and other secret special projects (some of which may have started to arrive). You have endured my terror, how about joining me in my living? And sharing what you are doing to affirm your living this week? Look at these (I have 25 of these postcards, so lucky!).
1 day ago