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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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update on my medical stuff and other going ons.

Had another busy couple of weeks with appointments.

I saw my allergist .. I went there with a list of 5 things hoping to sort out but in the 45min appointment we only got throu a couple of things so I need to go back in a couple of weeks.

One of my seizure incidents which manifested differently to the other ones as in one of them (one which was brought on by a highly stressful situation) I got dysphoria (felt real high and went like I was on illegal drugs) immediately before the collapse and seizure like activity on that occassion.

Anyway... I found out that the way hypoglycemia progresses is the order of my symptoms during that episode ... one can get dysphoria before a collapse and seizures.. I suspect now that is what happened on that occassion. My specialist agrees... he also said that hypoglycemia attack can be brought on by stress as stress affects sugar and insulin levels. So possibly another health mystery for me is solved. (my other collapses which seem different and in which I dont get dysphoria i think are POTS)

So due to us knowing I do get hypoglycemia from my old blood test results and due to that eposide he's said it will be a good idea for me to get that glucose monitor I'd been wanting to get and has written something so my insurance company should pay out for one :D and tomorrow my boyfriend is taking me shopping for that glucose monitor. (another thing then will be crossed off my huge medical to do list).

The sudden big weight gain I got when I added slightly more carbs to my diet as my other specialist had said to do, this specialist (who specialises in insulin and diabetes issues) agreed with what people here have said and he said that increase was due to fluid buildup in body .. he then went on and explained how carb affects fluid in my body (too complex for me to understand or remember).

He wants me to have some sessions with the other nutritionist in the clinic for more suitable low carb dietary ideas and told me to get that added by my doctor onto the chronic health care plan im on (expensive otherwise). So i need to make some appointments there.

I also was paid another home visit by the local mental health team. They've previously said they may be able to help me get some garden help so I'd been excited about that thought. This visit thou they just told me to ring the local council and see if they can help me (I'd tried all that several times in past over years but the mental health people say the council has new funding so "may" be able to help me now... I dont like my chances of getting any help there).

I also got a bullshit letter from them over my complaint about them, which they then said they'd investigate (over why i was rejected any psychological help when I was suicidal and needed support). Their investigation was so wrong with them not even finding the times they rejected taking me on as a client.. They had no records of ever rejecting me.

So Im now going to have to try to get my records from various hospitals (which will cost me) about my suicide attempts as the hospital in the past had refered me to them after suicide attempt (one before my last most serious one) and I was rejected by the mental health people after the hospital tried to get them to take me on....and I guess that would be all in my hospital notes. I was also rejected by the mental health people after my GP tried very hard to get them to take me on.

Its just all about the local mental health org..trying to make sure they dont come out looking bad so suddenly all their rejections are missing from their files and they say they cant find any info like that. I truely may go public some time over all this but I dont know if I have the energy to collect all the evidence of what happened to back it all up and Im going to have to back it up.. get the proof I was rejected at least twice. Its a crime they reject those who get suicidal due to mood swings then deny it happened.

Thirdly.. my new ME friend contacted me and gave me new details of her visit to the new doctor to our town. She told the new doctor she's got ME and the new doctor said "You cant have that as its a serious brain disease and you'd be dead". Then the doctor refused to look at the Overview Canadian conensus doc she'd brought in and the doctor said "that's a draft copy of some isolated research". So that doctor is definately out for me going to see her unless I want to try to educate the doctor that ME dont go killing everyone.

Fighting the battle with others constantly and trying to make sure everyone is treating us right....takes so much energy :(


I have my glucose monitor now and spent last night trying to work out how to use it (it came with an OMG 54page instruction book!!).. I didnt realise things like calerbration etc is needed to calibrate the monitor to each pack of test strips etc.

I kind of worked out how to use the monitor.. but are confused with the lancet which isnt isnt working or Im not using it correctly. Im going to have to ask doctor or pharmacist about it.

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