Okay, I got up early this morning in order to call the only current GP clinic in town who will take me as a patient, now that I have the (provisional) terminal diagnosis. This is a clinic which “can’t” turn patients away because it is there for the homeless, addicts and other people who socially undesirable (or too transient to treated at a normal GP). The clinic opened at 9:00. They don’t take advance bookings. I called at 9:45. They were already booked for the day. I told them I needed to book wheelchair transit to get there. They made an exception on the advance booking. I would get the first available booking. That is this Friday. So, that really wasn’t a super start to the day.
Because I do not have a GP I had to go to a walk-in clinic today to get some diazepam, which I use for sleep aid and for needle phobia (since I can’t wait until Friday). At 60 mg for one long blood test, I tend to go through it fairly brisk. The local walk in clinic will not take me on as a patient. I asked. The next closest walk in clinic agreed to take me on as a patient, then received the letters from the specialists with my (provisional) diagnosis and immediately sent me a letter saying, “Thanks for meeting with us, but we cannot serve your needs at this time.” But I still need meds and since the local walk in clinic doesn’t have my files, I have to carry around what specialist letters I have in order for them not to think I am a drug addict (seriously). Even though I offer for them to a) take me as a patient and thus have ALL my files, or b) call my specialist to confirm, they instead want to know why I don’t have a letter from specialist X or when am I visiting specialist Y? I hope it doesn’t surprise you that not ALL my specialist give ME copies of their letters, most they just send to my medical file. But that surprises the doctors who think I am some diazepam addict. In the end I get half the prescription I need and I go to the pharmacy to fill it. The pharmacist knows my (provisional) diagnosis and is fine with it, however when I mention who my defacto GP’s is (the homeless clinic) there is a look on her face like I have told her “So, I am buying up used needles on the street to inject my meds with.” A look of total horror. So, this Friday should be interesting (it is my first meeting where they have “agreed” to take me as a patient – if they reject me then I really will have no GP; much as I have not had one for three of the last five months).
Of course, many people believe that GP’s don’t simply dump patients or refuse to treat them. Errrrr…yeah. All a GP needs to do is say, “This is really out of my area of competency and I can’t give you the best care.” And presto, they are absolved. They aren’t treating you because to treat you without knowledge is not “proper care.” Of course if you have a 1 in a 100,000 condition like I have been (provisionally) diagnosed with WHO DOES have the knowledge? No one it turns out; so you get no treatment at all.
Casdok also found out, with her autistic son C. that GP’s wouldn’t touch them. So it is not just me. I think it is anyone which requires research, education, follow up, intensive care…you know, more than your 10 minute appointment.
I also was there to pick up the antibiotic for my tooth. It seems that in my obsessive tooth care (remember I am needle phobic hence also dentist phobic), my flossing pulled out a bit of tooth which now needs a crown….or a root canal….whichever. Well, they are going to put me out for that and it was all supposed to happen over the next two weeks; which is why I am taking the antibiotic now.
I get home, it is the dentist. They have changed their mind, it will be a week and a half until the “check up” which the dentist has told them to book “several hours” (gee that sounds fun!). But with the anesthesiologist needed for the crown…or root canal…whichever (that’s the dentist’s words, not mine) they are looking at Nov/Dec. Oh fun, and after I had him “grind down” my tooth on Saturday without any sedation at all (the couch still has five dents on each side from the grip of my fingers).
But wait….the mail has arrived. I had wondered why, after my last blood test, my endocrinologist specialist hasn’t called me in. But here is a letter from him. I don’t think that will be good news.
The letter is pretty cheerful because the endocrinologist has completely confirmed that I have autoimmune thyroid disease. He knows this because not only was my TSH high before but this last test showed that while my antibody or thyroid APO level SHOULD be at 35 units or less, mine are at 948 units per litre. Let me say that again: should be at 35; mine is 948. The conclusion is, my immune system is destroying my thyroid and I have hypothyroidism with fluctuations into “normal” (with low free T and lots of autoimmune fighting). The solution according to the letter: “Such fluctuations may last up to one or two years….in the meantime, nothing can be done”. Medically that’s not true, because since 2001 studies have shown small amounts of thyroid hormone given in treatment can slow the death of the thyroid and improve the quality of life (but I would need to find a new GP and specialist to give me this treatment). The thyroid produces hormones which help convert oxygen and calories into energy. So with Hypothyroidism you don’t get enough energy, you are fatigued, you are depressed, have mood swings, have a gravelly voice (due to a goiter), your hair falls out, you have difficulty concentrating and you gain weight.
The endocrinologist is happy for another reason. He no longer has to deal with me because whatever is wrong with me is clearly NOT predominantly hypothyroidism. For example, hypothyroidism makes you overly cold, while I am extremely heat intolerant (and can’t feel what parts of me ARE cold); hypothyroidism makes your heart slow down, while mine, as all test have conclusively shown, has sped up and is erratic. Hypothyroidism makes you constipated while I have well…the other problem. And while it may have an effect on why I can’t get enough oxygen, it isn’t the cause. Also, people with OTHER autoimmune diseases are more likely to have autoimmune Hypothyroidism. So I am “Someone else’s problem.” While my hair will fall out and my skin will get coarse and scaly and I will likely have constant “feelings of sadness” and “feeling of worthlessness” (and other hypothyroid symptoms) – it is back to my non-existent GP to check me regularly and then, once the thyroid is good and dead, actually start treatment. As I said to Linda, “How is it possible to get SO MANY things that can’t be treated?”
So, will still continue sleeping 11-13 hours a day, will still have muscles unable to heal (oh yeah, the PT trained in neuro-patients said that my muscles are breaking down and not rebuilding and thus I am in a sort of increasing constant pain. By evening this includes breathing as the muscles between my ribs are strained and I must sleep in an elevated position), just living strains my muscles and they are VERY slow in getting better. At least the PT said “I’ve seen this before” which was followed by a look on his face which said, “Don’t ask” and finished with, “There is nothing I can do for you.” Those are eight words I am really tired of. So, I am not to go back to him either.
So, after reading the letter and tired of feeling totally helpless, I called up a doctor that a home care worker had said was “good”; just random dialing and explaining to a office administrator in hopes she would ask the doctor if the doctor is interested and then MAYBE the doctor will call me back. With this administrator at least she said she would “talk to the doctor” which is the furthest I have gotten in four weeks (I do the random dial-up every week). That’s how I am trying to get a GP, since none of the six GP’s on the list of “taking new patients” are willing to take ME.
And, what’s better, my home care didn’t come. I waited but it turns out they had taken my home care person to cover someone who was sick but didn’t call me to let me know.
Actually, the day got worse after that. But this is as far as I talk about for today. Seahorse over at the Beauty Offensive had a day where she got to the moment they were to take out her wisdom tooth (and the weeks of prep she had done for that) and then…because of her chronic condition, they changed their mind….while she was in the chair. So I felt, “hey, I’m not the only one this is happening to!”
Sorry this isn’t all witty, if you want that, go to the BBC link in the post below. I am just so beat down right now, I don’t know what to do. So please remember…if you are Canadian, get some quick and obvious problem like a heart attack not some fucking obscure life draining condition which no one wants to touch with a barge pole. And for those who have been waiting on the sideline of my life for God or some other miracle to whisk me to normal: I have had three months of tests in order for one specialist and one doctor to decide that one of my organs is dying and that they will watch it die for the next two years with no positive treatment and they consider it A JOB WELL DONE. And that isn’t what I consider the “BAD” part of my day.
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