Now that the NHS is sixty, isn't it time it learned about joined up thinking? I'm sitting here dreading Monday's hospital appointment at the HIV clinic - I am firmly of the belief that my diabetes is the result of many years of taking anti-retroviral drugs - and it occurred to me that because hospital notes don't follow you around when you move, amongst the things I'm going to have to argue about is the pointlessness of putting me through another batch of tests to determine what's causing the dermatitis on my legs. Or the fact that my gamma GT is always high and no, I won't stop having my couple of cans of the brown stuff most evenings.
In the past few months I've been treated for a bacterial skin infection, where I'd scratched the dermatitis too much, and found I don't tolerate flucloxacillin too well. In fact I was running for the bathroom about an hour after every dose. I gave up taking them after five and a half days as it was getting intolerable. I visited the health centre that day (ten miles away) and they wanted a stool sample, could I oblige? Hey, I'm trying my hardest not to!
The next day I had a phone call from the hospital: I had cryptosporidiosis and they wanted me on the ward to put a few bags of saline into me. I gently explained that that wasn't going to happen because I didn't have the necessary paperwork to get a kennels to take in my dogs (I do now!). Since it was just rehydration (there is nothing that shifts crypto - only medication I could find for it on the net was a preparation that stops infected lambs from shedding spores), well, that's easy enough to do at home.
So as far as the hospital are concerned with this, my care has passed back to the Health Centre, who tell me that all you can do with crypto is erm... tough it out.
The next bit might be a bit Too Much Info...
I was basically number 2 incontinent for over two weeks at night. The trick I discovered is to protect your sleeping surface with towels, but also wear denim (the newer the better) jeans. Denim is kinda waterproof and can take very hot washes, so by the time you realise that THAT has happened, you can clean up, dump the soiled denims in the washer and change into the next pair. (If they're very soiled, place the seat of the denims in the toilet while holding the legs and flush like crazy.)
Possibly the end of TMI stuff. Throughout this catastrophic diarrhoea all I could eat was yogurt, barley water and fruit juice. Anything else was just too **** painful when it got past my stomach. Sneaking out to walk the dogs in between episodes, when I was convinced that another drop of moisture just couldn't be wrung from that sphincter, I found that not only was it taking three times longer to walk the dogs because I couldn't keep up, but that I was burning up glucose at an incredible rate. What would once have taken one point off my meter now took three if not four. Part of this is, I think the way crypto works in that it blocks absorption in the intestines while allowing fluids to pass. If that's so I think I'm still experiencing "crypto attacks" of malabsorption with their attendant risks of BS going haywire.
The plus side of this is that if I'm not absorbing the glucose, it can't show up on a test, hence my last Hba1c, taken as this episode was (I hope) ending, was a respectable 6.3. I still don't know how I should be accomodating this illness into my daily diet, but I'm still getting very low BS reading and, to my embarrassment, have discovered that when BS is low, I babble as though I were drunk.
This morning I walked the dogs, tested at 6.9, had a fruit yogurt (in case of a BS drop), went to the supermarket (leave at nine thirty, hour on the bus there, long wait for the bus back arriving home at one) and discovered that I'd forgotten to talk my pills. Just as well as my BS was now 3.3. That didn't used to happen...
I've lived in three very different areas (London, Bristol and rural Wales) in the past ten years and have always given the fullest possible permission for files and info to be shared, yet even so when I saw Nurse Diabetty a week or two ago she sugested that if she referred me to the podiatrist once more, but this time mentioning that I have HIV I might get an earlier appointment. That worked. Now we have to do it for the dietitician, who I've been trying to see since October. Wherever I go within the NHS I always make a point of giving permission for information from my files to be sent wherever appropriate.
I don't care that my diabetes is possibly iatrogenic in origin: had I not taken the drugs, I'd be dead (which would, it must be admitted) make a change from banging one's forehead against a brick wall. But if all the doctors and nurses I've seen all had access to test results and investigations from other NHS areas, think of the work that wouldn't need to be repeated over and over again!!!
Oh, for a centralised filing system whereby the doctor in one town can see what the consultant in another town said five years ago and so on... Or just give us our files when we move to a new area so we can give them to our new clinic.
Thank you for reading this far, or even skimming this far! I've found myself correcting what I've written, thus clarifying what I really do think...
(exhaustedly)
Steve
In the past few months I've been treated for a bacterial skin infection, where I'd scratched the dermatitis too much, and found I don't tolerate flucloxacillin too well. In fact I was running for the bathroom about an hour after every dose. I gave up taking them after five and a half days as it was getting intolerable. I visited the health centre that day (ten miles away) and they wanted a stool sample, could I oblige? Hey, I'm trying my hardest not to!
The next day I had a phone call from the hospital: I had cryptosporidiosis and they wanted me on the ward to put a few bags of saline into me. I gently explained that that wasn't going to happen because I didn't have the necessary paperwork to get a kennels to take in my dogs (I do now!). Since it was just rehydration (there is nothing that shifts crypto - only medication I could find for it on the net was a preparation that stops infected lambs from shedding spores), well, that's easy enough to do at home.
So as far as the hospital are concerned with this, my care has passed back to the Health Centre, who tell me that all you can do with crypto is erm... tough it out.
The next bit might be a bit Too Much Info...
I was basically number 2 incontinent for over two weeks at night. The trick I discovered is to protect your sleeping surface with towels, but also wear denim (the newer the better) jeans. Denim is kinda waterproof and can take very hot washes, so by the time you realise that THAT has happened, you can clean up, dump the soiled denims in the washer and change into the next pair. (If they're very soiled, place the seat of the denims in the toilet while holding the legs and flush like crazy.)
Possibly the end of TMI stuff. Throughout this catastrophic diarrhoea all I could eat was yogurt, barley water and fruit juice. Anything else was just too **** painful when it got past my stomach. Sneaking out to walk the dogs in between episodes, when I was convinced that another drop of moisture just couldn't be wrung from that sphincter, I found that not only was it taking three times longer to walk the dogs because I couldn't keep up, but that I was burning up glucose at an incredible rate. What would once have taken one point off my meter now took three if not four. Part of this is, I think the way crypto works in that it blocks absorption in the intestines while allowing fluids to pass. If that's so I think I'm still experiencing "crypto attacks" of malabsorption with their attendant risks of BS going haywire.
The plus side of this is that if I'm not absorbing the glucose, it can't show up on a test, hence my last Hba1c, taken as this episode was (I hope) ending, was a respectable 6.3. I still don't know how I should be accomodating this illness into my daily diet, but I'm still getting very low BS reading and, to my embarrassment, have discovered that when BS is low, I babble as though I were drunk.
This morning I walked the dogs, tested at 6.9, had a fruit yogurt (in case of a BS drop), went to the supermarket (leave at nine thirty, hour on the bus there, long wait for the bus back arriving home at one) and discovered that I'd forgotten to talk my pills. Just as well as my BS was now 3.3. That didn't used to happen...
I've lived in three very different areas (London, Bristol and rural Wales) in the past ten years and have always given the fullest possible permission for files and info to be shared, yet even so when I saw Nurse Diabetty a week or two ago she sugested that if she referred me to the podiatrist once more, but this time mentioning that I have HIV I might get an earlier appointment. That worked. Now we have to do it for the dietitician, who I've been trying to see since October. Wherever I go within the NHS I always make a point of giving permission for information from my files to be sent wherever appropriate.
I don't care that my diabetes is possibly iatrogenic in origin: had I not taken the drugs, I'd be dead (which would, it must be admitted) make a change from banging one's forehead against a brick wall. But if all the doctors and nurses I've seen all had access to test results and investigations from other NHS areas, think of the work that wouldn't need to be repeated over and over again!!!
Oh, for a centralised filing system whereby the doctor in one town can see what the consultant in another town said five years ago and so on... Or just give us our files when we move to a new area so we can give them to our new clinic.
Thank you for reading this far, or even skimming this far! I've found myself correcting what I've written, thus clarifying what I really do think...
(exhaustedly)
Steve
