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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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Tania's journal of drug treatments and other ME things

Discussion in 'General Treatment' started by taniaaust1, Dec 28, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

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    A weird mouth symptom.

    had my jaw yesterday, both upper and lower jaw just on one side, feeling like I had jaw inflammation along with a touch of sore throat, which made me wonder what kind of infection was going on (ive had that jaw inflammation feeling symptom before), so I looked inside my mouth to see if I had another herpes outbreak or anything weird showing which could be affecting my immune system and jaw.

    Anyway there was something interesting there to see, I had a red/black spot in my mouth. (I tried to get a good photo of it but it hasnt turned out clear, it looked more black then it's red appearance the photo, Ive had similar dark spots appear (but with herpes looking like bumps before) ..but the black spots when I get one of those completely black /brown ones, some have looked like mastocytosis freckle. This time I had no herpes like bumps as such in my mouth, just this one strange spot, like a black/red strange "blood vessel spot" thingy (it had like small blood vessel lines going to the dark patch).. it wasnt sore on the very spot thou, the soreness felt like deep in that same side jaw. My boyfriend thought I must of bit my mouth or something in that place..but its behind where my teeth are and that place my teeth cant even reach.

    The spot then did as I expected what happen, went away when the whole side of my jaw stopped feeling inflammed (note the side of the jaw affected was the same side as what the spot was on too) . Im sure these strange mouth outbreak things are going with other symptoms Ive found before I get with them.
    (not clear in the photo as I said but see that little spot I have the torch light on). Its only a little thing but its happening for some reason!! Anyone know what may be going on here? What causes mouth spots, deep inflammation feel (that side of my mouth inside was also redder then the other side) and can also give a sore throat?

    Is this a vascular spot outbreak thingy?? or some kind of infection?? mastocytosis?? different presentation of herpes?? (I'd love to get one of the spots analysed at some time, but when I get this symptom complex, they usually last average only 12 hrs (up to 24hrs) so Ive never been able to show a doctor these spots. This one came up in a new place to what Ive previously had them in my mouth (they usually are on the roof of my mouth when one appears, this is the first behind my teeth at back of mouth). This can also happen to me as a postexertional symptom too or when more run down.

    [​IMG]
  2. merylg

    merylg Senior Member

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  3. taniaaust1

    taniaaust1 Senior Member

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    "
    Rashes associated with M. pneumoniae infection

    Rashes affect up to one-third of patients with M. pneumoniae respiratory tract infection.
    The most frequent rash is non-specific exanthem in which short-lasting red patches appear on trunk and limbs. These areas of erythema clear by themselves and do not require specific treatment.
    Vesicles and bullae (blisters), petechiae (small purple spots due to bleeding into the skin) and urticarial rashes (hive-like) have also been described in association with M. pneumoniae infection. "


    Does anyone know if one can have a M. pnemoniae infection without spots on truck and limbs but rather in another place? and a mouth spots lasting less then 24hrs?

    I do thou get something viral reactivating at times which affects my chest (not thou with noticable spots) and that is why this year I got a diagnoses of asthma and now have a puffer which does help when I have that issue (which sometimes lasts up to a few days or so).
    ........................

    I put the symptoms i get (spots, sore throat, inflammation) into google and half the links which then came up were vasculitis ones. That spot did have like a veiny part feeding into it or bleeding into the skin but once again like the M pnemoniae spots too, thou it can affect anywhere on body, the lower limbs are commonly affected. (I forgot to say earlier my ear can also be affected as in sore ear too when I have these spots happening, always the same ear on the side the spot(s) will be in).
  4. taniaaust1

    taniaaust1 Senior Member

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    Stress Out

    I tend to stress out on phones but today had to sort so many things out, so had a lot of calls to make and now are in emotional melt down mode (overwhelmed and have been crying.. hopefully with typing this post I will settle down).

    The library.. has been stuffing up as they have been thinking Im not home when I are, so not collecting the things which need to be taken back to the library, that's been happening all month with non pickups happening thou Ive been awaiting for them to arrive (which left me with overdue things throu no fault of my own). Due to my dial up computer connection, I also havent been able to put any DVDs or things on hold (the moving things on the library site just jams up my computer). So today had to put over 20 things on hold by phone and try to sort out the library mess. Its been arranged now that they phone me when they come to the door to make sure I hear they are here (with my Aspergers if someone comes to my door and Im distracted, I just miss that there is someone there unless they are very loud at the door. I havent had a chance to get a door bell or anything like that yet as I cant get one of those locally with my support worker).

    Then I had to ring the dr to try to see if he could do a referal for my compression stockings by phone.. while on hold to him.. a prerecorded message was playing and it stated on it that one has to come in to the clinic and see the doctor for new referals. After quite a wait on the phone to speak to him, the receptionist ended back on the phone asking if he can ring me back later (and he still hasnt rung back so it looks like he wont be today).

    Then I rang the Complaints commissioner again re the offical complaint Ive had since around April.. to further complain about DisabilitySA not having had even rung my doctors yet (thou they keep using it as an excuse for not having done the other things they were meant to look into) or put in an application for a wheelchair for me thou they were supposed to. I mentioned about how I have now been offically knocked back for an extra hour per week (not refering to the unpacking support) but the Complaints Commissioner said that nothing can be done about that as its DisabilitySA decision. I also mentioned once again that my transport issues at getting to appointments remain unresolved (sighs.. what's the point of complaining about the states Disability service not meeting ones needs if the Complaints Commissioner has no standing to do anything??? I dont get it).

    What was strange when I rang the Complaints Commissioner.. is that they seemed to not at all to have reallised that my original complaint had never been sorted out and was still all up in the air and I had to go over all the areas of my complaint all over again, telling them what I was upset about.

    I just got off the phone to them, upset by this point as they'd said there was nothing they could do about getting me an extra regular hour as it all stands with DisabilitySA so decisions they make are final (and they also had commented that they arent caseworkers.. that's another part of what my complaint was about thou, Im needing a case worker too).. when Margaret from CSI (my home support agency rang). She's the one Ive had all the issues with, the one who's been insulting towards me at times and has lied etc etc so I dont trust at all anything she says anymore. The one Ive told the CSI complaints department that I feell like Im unable to emotionally deal with her anymore and do not want to and have begged for them to give me a different person to be dealing with. Anyway.. she suddenly rings when Im already in a distressed state after the other phone call.... my reaction was way over the top.. i screamed at her. So I guess now Im going to be looking like a looney to them. :aghhh: I just cant emotionally stand dealing with her anymore, I just cant.

    She was trying to give me good news (but it was actually bad news as the contract is all stuffed up and not what has been previously discussed and is for too long amounts of time I wont be able to handle having a worker here that long, I wont be able to handle doing things for that length of time with her (I wiped out on a worker yesterday after only 50mins and had to go to bed.. so hence had requested no more then an hour at a time..but they've given 90mins blocks of time after our previously agreed 60mins time blocks for someone helping me to unpack). So I rang my boyfriend crying.. asking him to sort it out before someone arrives tomorrow as Im about to completely melt down and could end up decking someone if they refuse to leave when Im exhausted.

    The agency has this ridiculous rule that you cant ask the worker to leave early at all and last time I had to get a worker to leave before the time was out, the worker just refused and refused to get out of my house (quoting that the agency could sack her for it).. which then ended up making me scream at that worker as I really needed her to go (incredibly she still wouldnt leave) and I ended up like sacking her from being my worker. even thou it was more so the agencies rule which caused the huge disagreement/fight between us. (when i start crashing, I become intollerant to sound and someone just moving bout my house can become unbearable to me and almost be sending me into a seizure..so even if I just got to bed and leave a worker up doing something, its an issue for me. Also if Im wired, having someone in my house over stimulates me more). There are times if Im getting much sicker, that I NEED someone to leave. If I NEED to rest I NEED to rest or all hell will break loose as I just cant then cope.
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I can't believe that it is legal to force a person of sound mind, engaging in legal activities, to endure the presence of an unwanted person in her home. Surely in your own home you have an absolute right to insist that other people leave? It would do my head in if someone refused to leave my home when I needed them to!
    taniaaust1 likes this.
  6. golden

    golden Senior Member

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    Thats horrendous. I despair and deplore these systems.

    I can think of a number of reasons for asking someone to leave my home -

    This is utterly rude for the worker not to leave. And as MeSci says - its sounds illegal.


    My Mother and I had these same issues with the daily home visits from the district nurses. For her cancer. It was anything but supportive.

    They came in pairs, with bad attitudes, talking about their own problems and not doing their medical jobs correctly. It was a nightmare. their intrusions and poor standards of care robbed us of precious quality time.
    taniaaust1 likes this.
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    That's terrible, Golden - I am so sorry.

    My district nurse seems very nice, and those I saw on the recent ITV series seemed to be too - really caring, and treating clients as real people. You must have been unlucky, and at such a sensitive time. :(

    It's bad enough having the builders in as I have, one of whom barges in and out, talking loudly to colleagues while I am having my dinner and listening to the radio, with the hilarious irony yesterday when he said to his (much-politer) son "Manners cost nothing..."
  8. golden

    golden Senior Member

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    There was two young ones, one specialist nurse, and one part time nurse (although she too broke down in tears due to the loss of her child years earlier) who was OK out of 20-30 per week.

    No, after talking too othet people, i am not unlucky mesci.

    Lazy wasn't the word for it. Medically incompetent in general too.

    They didn't have a clue about real basics. eg. cleaning out the open wounds, how to stop the urine bag from leaking every night (in the end out of desperation i used whats that hardware tape called ? ??- they told me they disapproved ! -( but my mother was no longer soaked in urine each night - the tubes were coming off)

    They didn't understand her need for fluids. They had no knowledge of side effects of drugs.

    They didn't inform me , after thry drugged her into sleep , that they had put her on the liverpool care pathway.

    They all denied a drip to her.

    They didn't do anything for her at all except sit round my kitchen table , leave a mess, gossip and laugh loudly, take phone calls for other things....

    complained about the insence i was burning!!! actually rung me specifically to ask me not to burn it


    And after surgery left my mother incontinent, she needed pads. It was months before they correctly allocated them.

    It must have been over 100 requests to sort it.

    At one point the hospital she was staying at told her they had run out of pads and she should use her own. She phoned the district nurse to get them so i could drive them to her.

    All the district nurse would ever do was pass the buck.

    In the end my mother screamed at her down the phone and swore - she was dripping with blood and urine.

    I washed my mother, fed her, cared for her.

    the one thing left for the nurses to do ...they complained to me about doing. - empty the urine bags in the morning. They told me i should be doing it.

    It was disgraceful.

    There is always the odd one good one and i praise them, but over over all it was a nightmare.

    They wouldnt take responsibility for even monitoring my mothers blood either . I had to get the Hospitsl to fax an order through to get them off their lazy backsides.

    I discovered they hadn't been cleaning the open holes in my mothers back when they were chsnging the dressing (to her kidneys)...

    Any idiot should know to do this.

    When quering her she said she was doing it the 'natural' way. Another nurse dif make a note in the chrissie records to CLEAN open wounds!!!

    She got a serious infection from this.

    When trying To get a drip for my mum after they overdosed her on drugs...

    i was told there are certain drugs she can be given. if she starts making annoying noises when breathing - you know as they were dehydrating her to death.


    but i am glad you have a nice district nurse MeSci. It makes all the difference.
    taniaaust1 likes this.
  9. golden

    golden Senior Member

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    One of them pulled one of her tubes out in fact - of her kidney - that she had been operated on to put in....or that was really painful to put in...

    i think they didn't bother putting it back in.

    I wrote about the incompetence monitoring my mothers bloods whilst she awaited scents. she nearly died as her blood kreatinin levels were above 1300... she had been deteriorsting for 2 weeks stopping eating, drinking and vomiting.

    They just were clueless! after speaking to a vet - i said she needs a blood test.

    They all just came and went for two weeks whilst that occurred issueing Anti - si ck medication.

    I mean, its scary stuff . What that meant in real terms for my mother after that

    was the Specialist Cancer Doctor actually said to her in his posh voice:

    "your kidneys are F u **ed " !!!

    Peculiar thing was , even though it was horrific news - my mother was delighted at hearing a posh doctor
    swear lol :) she thought it was naughty of him and you just dont expect that do you - she loved it .

    It was the initial round of chemo caused it- so she was awaiting a stent so she could carry on with the chemo - whilst awaiting ...her bloods werent being monitored - she stopped eating - was vomiting - stopped drinking...

    And NONE of them did anything.

    I was saying , she is diabetic, she needs fluids etc.

    After speaking told a vet about her I reslised she needed an urgent blood test.
    She got rushed into hospital after this for emergency treatment - they said she was very close to dying.
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    What an appalling experience you had. I have to say I have only met my district nurse twice when she came round to take blood. But I have seen appalling behaviour of nurses in hospitals. For example, I was in intensive care once, and sadly someone was dying or had died, and their family was around the bed with a priest reading the last rites. I was shocked when a nurse on the other side of the curtain, but close to the dying patient's bed, suddenly burst into loud laughter. She cannot have been unaware of the dying patient and their family.

    A more recent incident was when an elderly lady had been helped to the WC, and shortly afterwards I heard her calling for the nurse. After this continued for a while, I came out of my (isolation) room to investigate, and she said she couldn't breathe and asked me to get a nurse, which I did. The young nurses were sitting within clear earshot, just chatting, and looked at me blankly when I told them the lady needed help. It was several minutes before one of them could be bothered to get off her backside, and when she arrived she said to the lady "What HAVE you done?!" as though she were a naughty or silly child. I wondered whether she would speak to her own grandmother like that.

    The lady was helped back to bed, but without her (expensive-looking) underwear and pad, which were left in the corner of the WC for at least an hour. I wondered whether she was left in bed without underwear and protection.

    It made me vow to avoid hospitals when I get older, although I do so already.
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  11. golden

    golden Senior Member

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    p.s. the other main areas were

    pain medication

    the nurses had me driving round to a late night pharmacy with a morphine prescription !! as they couldn't keep themselvee organised - that caused loads of problems

    And constipation medication and laxatives . They couldn't get it right.

    Worst case was my mother in tears at the toilet and covered waist down to ankles in poo.
    The laxatives caused an explosion.

    I was trying told keep her balanced and light , i said its judt what bodies do ...
    whilst trying to clean it all off with that foam soap a.s.a.p. as she couldn't stand for long.
  12. golden

    golden Senior Member

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    Yes . That is more the norm.
    I will not be treading that path myself.

    My mother had her own horror stories of night time nurses. mostly of other patients (fortunately for us)
    But she said the night time ones were the worst.

    The image of the overworked medic certainly doesn't come across when they are always standing round their nurse stations chatting .


    We had wards stinking of sick and poo , a few bug scares where wards were closed down.

    When i was visitinh There would ALWAYS be patients asking for my help...
    one elderly lady was couldn't hold a glass of water and was begging.
    They used to lock away her hearing aid so they made her deaf ! (with the hope this would shut her up )

    My mother said patients wete screaming for help all night - no-one came - one patient was dead the next morning ...


    And loads more stuff. This was in different hospitals over a time period so is not isolated incidents .

    My mother was too frightened to complain and instead tried to flatter and praise them as much as possible.

    When i was asking for a drip for my Mother - i was told i shoukd get a priest in for last rites...i am annoid about a medic saying that too.

    I will i am sure wish to convey some positive experiences at some point - its just that overall its negative.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I have had to help fellow-patients several times when there was no nurse around to help, or they couldn't be bothered. I must say though that most of the nurses I have met in hospital have been great - kind and caring. It's been (most of?) the doctors who have been the real a£%eholes. A few of those were OK.
    golden likes this.
  14. golden

    golden Senior Member

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    When I read this article a while back, aside from thinking it a bit ghung ho and rude, there are alot of valid points in it which reflected my experiences . I felt relieved - i was not alone - i was not the only one this had been happening to .

    my medical friends who are worth their salt - criticize in this way too because as they tell me - they are there for the patients - to serve and help patients.

    the other most healing news has been the thousands of complaints and a possible 150,000 patients killed on the LCP . It is now being stopped.


    http://www.vernoncoleman.com/cowgirl.html

    My friend who retrained late on to be a nurse - couldn't stop crying.
    and after serving her time on the geriactric ward - couldn't waiting told get out of that department as there was no way through for her.

    The nurses at hospital all gathered round my mothers bed and sang happy birthday to her and gave her some of theit cakes ....so there was a marked difference in nursing styles .

    The specialist cancer hospice my mother stayed in for a week (she died at home where she wanted - but they put continous unending pressurr for her told go to the hospice)

    that was pretty good. They were efficient, clean, got her pain meds right.
    but she said she felt like she had been assaulted as the nurses waited for her to be in a deep drugged sleep before they stripped her and washed her without her permission.

    So anyway enough hospital stories before bed ...:)
  15. taniaaust1

    taniaaust1 Senior Member

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    oh horror hospital stories, I have so many of those, so many things done to me eg I was in ICU not able to sit up by myself and really really needed to use my bowels, i waited and waitied and ended up yelling for a nurse to put the pan under me, they told me "do it in the bed and we'll change your sheets later".

    Then there is the over 3 days in hospital i had to go without food (as they said I would have to see their dietian who was away before they could give me a low carb diet ... i go crazy (can actually get violent) on carbs due to how they affect my insulin and also probably due to my MCS being then senstive to my abnormally high insulin so then couldnt eat.. NOTHING they gave me was low carb).

    Then there is the dead baby.. a full term baby which had been born badly deformed (it looked like its lungs were outside of its body and then the aboriginals had tried to kill it by steaking it anally (it had been born in the outback and flown in). Anyway, this baby still with drips and tubes attached, was left sitting on a table in my full view for probably at least half a whole day. When I got out of hospital I had nightmares for a while over this baby left there..completely uncovered and naked which I kept seeing every time I looked up. (One of the nurses finally brought some clothes for it at the gift shop and dressed it as she couldnt bear it either).

    Something haunts me even more then that poor little baby was the eldely guy across from me in the ICU and what happened to him.

    This elderly guy who looked in his 80s, was from my home town out in country, who lived in his own house and had many old friends there locally (he talked about his mates etc.. he was obvioiusly living a good social life etc in his own home). He been ambulanced in due to a urine infection and also an infected toe and they had him a drip for it. A nurse/doctor were talking about how one of the homes (it was in the city) had a spare bed and they'd just been told to find someone to fill it.

    Well this guy as they had this bed in a home they wanted to fill, was selected for it (there didnt seem to be many elderly people in the ICU, he was the only one I saw so it was him picked). A psych came in (irronically it was as psych Ive had dealings with too in the past and pronounced me with having BPD), he interviewed the guy, pronounced him with also having some memory issues and against his wish, told him they were sending him to the home (that guy, his brain was FAR BETTER then my own, I didnt noticed any issues other then typical taking time to think, he'd been next to me for 3 days (not due to they were doing anything with him but he was basically in there and didnt seem to be recieving any special care except the drip for infection). The guy started getting all upset over his elderly firends as they would never be able to see him (the country area we lived in is 45mins drive from the city).

    A couple of the nurses got really upset about this situation too and tried to argue with the psych about having him sent there (one actually stormed out of the ward and left work due to this she was so upset)..as they didnt think he was needing at all to be put into a home either. Anyway.. this psych gets on the phone and rings the old mans family and tells them that due to his health issues (as i said he just had an urine infection which was being treated and a infected toe), he's gone very downhill and isnt safe at all to go home and needs to go into a home and gets permission from his son over a phone to put him there (his family hadnt come in to see him the few days I was conscious there so wouldnt had any idea).

    Anyway.. so an ambulance then comes to take the guy to a home, the guy was still crying about wanting to go back to his home where all his friends are. This home thou (I'd already heard the nurses talking about how dreadful this home was before this) has a rule that the ones there cant wear their own clothes. So the poor guy is MADE TO take his own clothes off and dress in the homes uniform (he was protesting so much).. pjs which looked like what the convicts used to wear (black and white stripes). "You need to wear these as everyone needs too". Anyway, witnessing this whole incident and how this guy who really didnt need to go to a home was forced to go to a bad one due to a bed which they just wanted to fill. They didnt give a shit about hi and that psych decieved his family on the phone on top of it.

    I wanted to ring the family of this guy to tell them what was going on but I was unable to get out of the bed and didnt have access to a phone so couldnt help him (and by the time I got out of hospital, I forgot the guys last name.. I even then was wanting to tell them they sent him to that home just cause their was a bed they'd been told to fill).
  16. taniaaust1

    taniaaust1 Senior Member

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    more tear today. I feel like everytime that phone rings, its going to end up making me cry as so much is wrong with my current situation.

    The drs (Dr Del Fante) clinic rang me back, returning my phone call from yesterday but he was too busy to speak to me yesterday or rather I should say the secretary rang me back today as he didnt want to speak to me on the phone as he says I need to come in for a referal.

    I asked if I can have a phone appointment but the answer is no, he doesnt do them at all. I told her that I wanted to talk to him by phone about the referal as I had no way of getting there (he did the other one wrong way back, not enough compression for POTS or otherwise I could of used the old one). She just goes "you must find someone to take you". We ended up going back and forth on the phone for ages with me saying .. I cant get there, I even told her about the offical complaint I currently have with the health commissioner over DisabilitySA and my transport situation and not being able to get to appointments but she still wasnt listening and still saying "you need to get here if you want another referal".

    If he'd filled out the Disablity Transport forms for me in the past when I asked (he refused).. well then at least I may be then more likely to be able to have got there (using half price taxi.. he's a very long way away so it still would of costed heaps which I may not been able to afford taxi wise).

    Anyway.. Im soo upset.. without that referal i cant get my support stockings i need to wear so currently are doing even worst then I usually do for last few weeks since old ones completely tore. (i just cant order then online as they do need to fit me properly or I get too many issues). Its like that dr has abandoned me (and he's the best CFS specialist I have).

    Anyway.. as per normal im just stuck.. not being able to get to a specialist so cant get the things I need to have.
    ..............................

    CSI (home support agency had screwed up again) Fortunately my boyfriend on ringing them today for me found out they'd stuffed up in yet another way and sorted out the issue. They'd booked my home support time for the unpacking stuff.. right after my other home support time when the other helper comes (so doubling the lenght of time people would be at my place here helping me). he whole reason I asked to have the unpacking support on the same time as my other home support comes, was that is only the length of time I can cope with someone being here and me having to do things. Ive told them so many times that I can only have people here for a certain length of time but it seems they never listen (it was Margaret again.. the coordination who never listens to my needs... Im so glad it was my boyfriend who spoke to her this time. Anyway, he's told her now too **sighs** I wonder how many times more she will keep making the same mistake, this isnt the first time she's done this.

    So due to not listening and then giving me the other at an unsuitable time (i'd actually be in bed then as i usually have to go to bed and rest after the other home support session), they've had to change the unpacking support which was supposed to start today and put it on next Thursday. This week delay in my home support being able to start due to their mistake, will mean that I may loose one support week of my unpacking support hours Ive been granted as the hours expire within a month (which was a mistake DisabiltySA made with my contract which was meant to be longer to give more time for the hours to be given to me as per we'd previously agreed). (so both agencies have made mistakes so far with the arrangement of my house unpacking support iwth probably 1hr now lost out of the 6 Im meant to receive before this support has even started)
    golden likes this.
  17. taniaaust1

    taniaaust1 Senior Member

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    Update

    The receptionist of the clinic where Dr Del Fante (an Adelaide CFS specialist) is, rang back... it was weird as she rang back and was being very nice, understanding, being compassionative instead being completely not understanding,at all, as she'd been before. (im not used to someone doing a complete round about face like that.. I wonder why that happened, maybe she felt bad for how she was on the other phone call with me? I was left feeling quite upset due to how she'd been after the other phone call).

    We discussed my transport issues a little more and she told me that Dr Del Fante said to for me to get DisabilitySA to give him a call and he'd talk to them over my situation about not being able to get to him when he really wants me to do so. He also now is also willing to fill out the Disabiliity transport form for me (which wont completely solve my issue as Im currently not safe to be leaving my house alone but it could help).

    So I rang DisabilitySA, Helena the one who's been dealing with my complaint there (and who was supposed to have spoken to all my specialists ages ago to sort things out), she had just actually been working on a letter in regards to applying for a wheelchair for me. (That upset phone call to the Health Complaints Commissioner a few days ago over that DisabillitySA STILL hadnt done anything and most of my complaint had been about the wheelchair when I rang.. so obviously they must of rang DisabilitySA and told them to do something and got that to FINALLY happen!!!

    How hard one has to push to get needs met is ridiculous!!.. take things to the most highest level and then still have to keep pushing and get the highest level to push too before the state disability service does a thing).

    Anyway so during the phone call Id made, she read to me what she's written on my wheelchair application now about to be put in and she said she'd also give Dr Del Fante a ring.

    Anyway.. things "may" be starting to move along now .. after two of us have put in offical complaints over my case to the most high up gov level and 3 more calls to them on top, with them now pushing DisabilitySA to fix things (unless the pressure is kept up, DisabilitySA dont solve anything). If anyone in SA is reading this thread be aware you wont get anywhere at all unless you have a higher dept riding the back of our states disaiblity org
    ...................

    Golden.. I was very sorry to read about your mother the other day and what happened to her and how much you had to go to in trying to get things sorted out with her. (im not surprised due to how health systems are etc). I dread getting old due to things like that, people take advantage of the most vulerable and the elderly is often just as ill treated as the vulerable disabled.

    Ive lost count of how many people Ive spoken to over the years trying to sort things out and how many phone calls Ive made, just to try to get my needs met.
    Little Bluestem, golden and Valentijn like this.
  18. taniaaust1

    taniaaust1 Senior Member

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    My sister rang me today, almost in tears wanting to know how to treat her "fatigue". She crashed after taking her youngest to playgroup today (just from putting away the toys) and was so very stressed out as she has a house inspection tomorrow and she isnt going to be able to clean.

    I think she's finally starting to come out of her CFS denial (but then just when it looks like she's going to do that in the past, she usually manages to get back into it due to convincing herself that she's doing a bit better). I stressed to her again that I dont think she just has "fatigue" and she then told me she doesnt want a CFS diagnoses as it will interfere with her ability to go back to her nursing and training (shes applied to do midwifey) as she wont be able to say she's healthy. Against my advice, she's applied to go back into it full time next year :eek: . She only "just" managed to recently get thou updating her nursing certifcate but while she was doing that, she couldnt even look after her own children or her house.

    Ive been trying so hard to get throu to her as she's at high risk of making herself worst and destroying her life by ignoring how sick she actually is (she's got worst food reactions and tummy issues then I get).

    I truely didnt know what to say to her when she asked me what she should take to treat her "fatigue" (fatigue which has been so bad that at least once had to be carried/helped by someone to her car after meeting her kids at the school gate). Her case baffles me as she has no triggering event to her illness (so no typical ME/CFS history), none of the abnormalities I have coming up on her tests eg no insulin issues, no obvious viral symptoms, no MTHFR mutation, no POTS or BP issues showing. (Ive given her a poor mans test over 12 mins and her heart and BP are stable during it.. . instead thou.. her oxygen levels and lung function has been low (I think she said it came up being at only 86% during testing .. so her doctors have now treating her for asthma thou I dont think she gets a wheeze.. just finds it hard to breath at times and has issues with her chest and also feeling like something is stuck in her throat (which is a symptom I dont get) . (Maybe she could do with some oxygen?). She was also stable when I got her to do a Rombergs test. She has no ME neurological signs at all but is getting FM (which hasnt been diagnosed yet).

    it baffles me how two family members can have completely different manifestations of this illness and I feel completely at loss of what to say when she asks me for advice (as I myself dont randomly trial things without a good reasons eg abnormal test results). She wants her post exertional fatigue treated.
  19. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    They do not get it.. the states disabilty service (Helene) just rang me back and go "Do you know that all your specialists are just GPs?". They do not get why I just cant see any GP and that my GPs are in fact "specialists" in areas.

    She has now suggested that I take time out of my home support each month.. to save up and use to get me to doctors. :( (she's said that after my application for more time has been knocked back, when I already dont have enough support time to cover my needs not counting the doctors eg someone to help me do some spare meals for when Im too sick to cook).

    Anyway..she's also going to ring red cross and ask them if they can transport me (Ive already explained to her that the red cross isnt suitable as Ive already spoken to their head and they cant take just me or tell the others they pick up at the same time not to wear perfume).

    She said that Dr Del Fante has rang them now about me needing transport to appointments (I'd told them to ring him as he'd asked that but obviously they never rang him so fortuantely he's now rang them).
  20. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Midwest, USA
    The best way for your sister to 'treat' her PEM might be to avoid it in the first place. Have you explained pacing to her?

    How unfortunate that the Red Cross allows people to wear perfume on the van. My doctor does not allow people to wear perfume in her office.

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