losty
Regular
Posts: 68 
Crafts: Knitting
Time Crafting: 20-50 Years
Registered: Jun 27, 2013 8:49:31 GMT
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Post by losty on Jul 2, 2013 17:05:30 GMT
As you know, I have had various health problems since a stomach op which turned out to be more complicated than expected, last September. This is on top of ongoing management of oh-so-fashionable bipolar disorder.
I have had some excellent home based help for the past few weeks, which has seen me through the emergency CT scan and lumbar puncture at the end of May. In the course of this, they have faffed around with medication. After the CT and LP, it was decided that one med was causing problems, and I was switched, without explanation or discussion - as far as I can recall from one mental med - which has always suited me - to another. Reason? Very low blood pressure. No matter how often I say - through pregnancies, the operation, etc that my bp is naturally low - a family thing - there is always concern about it.
Anyway, I realised these new meds DO NOT suit me. I accept certain side effects, but appalling diarrohea and electric shock sensations are not a way of life.
To cut a long story short, I have had about 5 days with no anti-convulsant and hours on the phone trying to track down some bugger to prescribe me some. Fortunately, my emergency stash of diazepam has helped. I have actually been searching through handbags/pockets/back of the sofa for anti-cs like a crack addict. Wheeee - got the the GPs for a script, and asked for an appointment to see the GP for a go-back to the "low blood pressure" meds. A GP was free at that moment! I now have everything I need until I see my regular consultant next week. Relief! At the GP's I was jerking and jumping at the fluorescent lights.
On top of all that, I have had a decent shower and got out of my pjs, had a home delivery of much needed groceries, and the washing machine has more or less worked. I've not eaten yet, but have crock-potted some summer fruit, hoping it will slide down with yoghurt later.
Rant over, relief arrived, expecting some sleep tonight.
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hurricane
Regular
Glad to see Tal!
Posts: 36
Crafts: Knitting, Other
Time Crafting: 20-50 Years
Registered: Jun 27, 2013 12:52:06 GMT
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Post by hurricane on Jul 3, 2013 13:51:59 GMT
Poor kid! Lousy batch of health problems with no one listening. Sometimes I wonder about Doctors. Hope you straighten out all the meds soon ands start feeling better.
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losty
Regular
Posts: 68
Crafts: Knitting
Time Crafting: 20-50 Years
Registered: Jun 27, 2013 8:49:31 GMT
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Post by losty on Jul 3, 2013 14:13:29 GMT
Thank you very much for this. I feel sooooo much better today: a better night's sleep and just one teeny jolt this morning. The weird thing about lamotrigine/lamictal is the amazing and vivid dreams it gives me. Now, if someone would wire my brain up to a camera, I would be minted!
How is your sister getting on with her knitting? Charli has been enjoying it so much, she had to burn the midnight oil to finish her assignment for college today!
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hurricane
Regular
Glad to see Tal!
Posts: 36
Crafts: Knitting, Other
Time Crafting: 20-50 Years
Registered: Jun 27, 2013 12:52:06 GMT
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Post by hurricane on Jul 3, 2013 15:24:19 GMT
My sister is a washcloth machine! We will see how she does when she tries something new.
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losty
Regular
Posts: 68
Crafts: Knitting
Time Crafting: 20-50 Years
Registered: Jun 27, 2013 8:49:31 GMT
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Post by losty on Jul 3, 2013 16:23:13 GMT
Knitters United!
How are you spending 4th July? Some fun, I hope x
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hurricane
Regular
Glad to see Tal!
Posts: 36
Crafts: Knitting, Other
Time Crafting: 20-50 Years
Registered: Jun 27, 2013 12:52:06 GMT
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Post by hurricane on Jul 3, 2013 21:22:11 GMT
Going to fireworks tonight, then my SIL's pool ( boring) tomorrow and my MIL's for hamburgers and hotdogs later (super boring).
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losty
Regular
Posts: 68
Crafts: Knitting
Time Crafting: 20-50 Years
Registered: Jun 27, 2013 8:49:31 GMT
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Post by losty on Jul 3, 2013 22:04:00 GMT
Oh dear! Well I'll think of you anyway, and have some Reese's Pieces to mark the day x
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hurricane
Regular
Glad to see Tal!
Posts: 36
Crafts: Knitting, Other
Time Crafting: 20-50 Years
Registered: Jun 27, 2013 12:52:06 GMT
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Post by hurricane on Jul 4, 2013 3:30:01 GMT
Actually everyone is moving here after for burgers etc, so at least the food will be good!
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mags
Regular
Posts: 37
Crafts: Knitting, Other
Time Crafting: 1-2 Years
Registered: Jun 27, 2013 10:31:42 GMT
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Post by mags on Jul 7, 2013 23:03:28 GMT
Yay finally found my login details lol I am a donut sometimes well most of the time ha
Anyway I can totally relate to the meds thing. Dunno if you know but a year and a half ago I was finally diagnosed with rheumatoid arthritis, had a great consultant who talked me through all the treatments etc and sent me off for X-rays and a steroid injection to kick start the treatment, couple of weeks later it was off to the doc for pneumonia and flu jabs then a few weeks after that I started on immunosuppressants. All great so far.
Then my health authority decided I was being seen at the wrong hospital so sent me to a different consultant at a different hospital that I need to drive to (the other was a bus journey away) soooo I had to go through ALL the tests again which of course showed a marked improvement of my symptoms due to the immunosuppressants. So in his wisdom this new consultant decides I DON'T have ra despite me having ALL the markers for it with the first consultant I saw. He said it couldn't possibly be the meds I was on having an effect because there wasn't enough improvement to warrant it. Initially I was told it could take up to 2 years to see any improvement once I had started with the immunosuppressants so in his infinite wisdom he took me off ALL the ra meds and I've gone downhill rapidly since then.
Since then I have been banging my head off a brick wall with my gp trying to be referred back to the first consultant (well he was the second actually who had diagnosed ra but the only one offering treatment). She reckons I have to stick with this useless one but I will get back to the first one eventually, I'm stubborn like that lol.
In the meantime I've had carpal tunnel surgery which has stopped the pins and needles but has NOT stopped the heat and swelling in my hands I wake up in sheer agony every morning all my joints are red hot and swollen, my ESA (which is what measures inflammation) is off the scale as usual and still this other consultant and my gp are saying its fibromyalgia NOT ra but I have very few of the fibromyalgia symptoms. I also have pernicious anaemia which is basically an inability to absorb vitamin b12 properly so I have to have injections. The problem being I am not like everyone else, heck everyone else isn't even like everyone else lmao, not everyone can cope with the 3 monthly injection, I know people who have a higher level of b12 in their system but need daily injections to function etc etc. at one point I was "allowed" to have my jab every 6 weeks instead of 12 and I functioned a LOT better. Bt then a new gp took over after the other one left and she's put me back to every 12 weeks which I just can't cope with at all, add to that type 2 diabetes which causes similar symptoms as the b12 deficiency and I am fighting a losing battle.
The b 12 injections cost the nhs roughly 32p. My gp will not sanction more frequent jabs despite me telling her it's my body I know what I need. Same with the ra. I have seen 5 out of the 6 GPS in the practice about being referred back to the first hospital but not one of them will sanction it. The other doctor I refuse to see as he basically told me I should be out working and not on benefits even tho I can't walk a lot of the time due to nerve damage in my feet which incidentally is caused by a lack of b12. I have tried to get a job but no one will hire me due to my medical issues. I am on disability thankfully but I even had to fight for that, it took me 5 years!!! So you can tell how long I have been fighting for proper treatment for.
It really pisses me off that doctors refuse to listen to us their patients, if it wasn't for us they wouldn't have a job and occasionally I know it's bad but I wish just one day to meet a gp who had even half of the health problems I do, maybe they will understand.
Agh sorry for my long post
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losty
Regular
Posts: 68
Crafts: Knitting
Time Crafting: 20-50 Years
Registered: Jun 27, 2013 8:49:31 GMT
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Post by losty on Jul 8, 2013 9:00:41 GMT
Mags - those are BAD experiences and BAD treatment. I thought the Scottish part of the NHS was better - it used to be. As one who know these things, and shhhhh , was a senior official in the govt part of the NHS, carry on battling. GPs are on a "points mean prizes" system, and some of them are greedier about it than others, but the cost of a B12 injection, if that is what they are worried about, is totally ridiculous.
As to consultants, if one doesn't like the other they can, sometimes, play this STUPID game. I once actually zapped my case straight up the the Parliamentary Ombudsman - 'cos I could. However, that is a long process, and should simply not be an option.
You do sound like a battler, and you are clearly in pain with multiple health problems. Not right. Anyone who has anything to say about benefits can take a flying one ..... I get Disability Living Allowance because of the BPD, and get the full care plus the lowest mobility. I got that thanks to a good nurse who filled in all the forms. I had no idea I was entitled.
Just keep on keeping on - although I can tell I don't need to say that to you x
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Post by Tal on Jul 29, 2013 21:16:21 GMT
-scoops all of you up and cuddles- Sorry I've been AWOL on you or I would've said something sooner. T_T I've been in my own medical bureaucratic hell, too. But I'm just glad to be back.
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