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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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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. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Since she wants more hours, isn't it possible that she could add a second client and keep working for you, too? My mother has caretakers and some of them have other clients, as well.
     
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  2. taniaaust1

    taniaaust1

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    She does have other clients from the agency but the issue is sometimes she's only getting given by the agency 15hrs work a week. They instead are always hiring more workers rather then giving the workers they already have, who need the hours, more clients. Hence she's applying for new work elsewhere and some of those are full time jobs (so if she gets a new job, there is a good chance she will have to quit the current part time job at the agency)..
     
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  3. taniaaust1

    taniaaust1

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    Nods.. I did think about that. Another issue is 90% of the important phone calls I do get coming in.. are from private numbers (all the gov depts are private calls so I cant tell what is what, same with drs).. so I cant tell apart which were telemarketers and which were important calls.
     
  4. taniaaust1

    taniaaust1

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    I had a very bad day yesterday (Wednesday).. was soo exhausted from Monday when my friend came to help me with things and Tuesday my shopping day. I spent yesterday falling all over the house. Library people unexpectively came to my door and I only made it there without falling but then went down while they were speaking and then had to get the two stranger guys from the library to help me back to bed (I fell twice more on the way thou they were trying hold me up). It was embarrassing as I was in my nightgrown too so having two non medical people, strange guys having to manhandle to my room.. it felt horrid.

    I was close to needing to ring an ambulance yesterday.

    Today.. I woke feeling quite ill still (feverish, nausea etc).. and thought I'd be ending up in hospital today due to still going to go and do a doctors appointment like that (which would only make me worst). Fortunately in the past couple of hours Ive come good and I think I may now be able to get throu that appointment without the dr calling an ambulance **fingers crossed**

    Ive had a hard time today working out what of the so many different issues should be focused on todays GP visit.. and have decided to use this important to
    1/ update dr on last hospital trip (I hate going to hospital, where I have to deal with ones such as that bad nurse last time I ended up there)
    2/ Im going to see what she can do about getting the wrong borderline personality disorder off my hospital records
    3/ Im taking in some info from John Hokpins for her on POTS and CFS
    4/ also taking in a good article on debility in ME/CFS
    5/ I also are going to talk more to her about the degree of memory issues Im having as its causing me so many issues at home (Im really wondering if Im getting Alziehemers thou of cause it may well just be the POTS and the ME).

    Hopefully I can get throu that in a double appointment (30-40mins?)
     
  5. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I can understand you support workers need for full-time work, but am sorry that you may be losing her.

    If you have an actual phone answering machine, not voice mail, you can hear the message and pick up the phone if it is someone you want to talk to. If I am busy, or in bed, I sometimes let the machine take the call because it is usually a telemarketer.

    I hope the doctor appointment goes well and you are able to discuss all that you plan to.
     
    Last edited: Jun 19, 2014
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  6. taniaaust1

    taniaaust1

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    My support has told that it looks like she has a good chance right now for getting another job (its her dream to work with disabled children and with this job she'd be doing that). They've interviewed her and do like her and she just needs to pass the medical they want her to do by the sounds of it which she will (her medical I think she said its next week). Im very happy for her and there is a chance I may still be able to have her as if she gets this new job its apparently only 30 hrs a week, finishes at 3pm each day, so I will see if I can change my time and keep her if she still stays with the agency. **fingers crossed for me**
    ...........

    My GP was really good as normal. She told me that the disability services had emailed her and she didnt like the tone of their email. I though when she read it out to me, I couldnt see anything wrong with it. (I guess Im so used to be treated like crap from them in horrid major ways that I cant tell the undercurrents of things as they are so in my face when dealing one to one with me). She said they obviously do not understand my situation at all. (yeah!).

    My GP when I broached the subject about the BPD being on my hospital records and affecting things, she said she didnt think its that affecting things, she thinks its simply a case of the other doctors there not understanding ME/CFS and POTS etc. I told her even if that is the case, I still want the wrong diagnoses off my medical records there and asked her how to go about that.

    She said once something is on records at the hospital, one cant get it off of their completely but there is 3 things which can be done about it.

    1/ Go back to the ones who originally diagnosed that and get them to rediagnose me as not having it (this one is an issue as I dont even remember who gave me that diagnoses.. she said that was a bit more of an issue then).

    2/ Go and see another psychriatrist and get them to do a letter saying that I do not have that other diagnoses and then carry that letter with me to present at any of the hospitals (she told me all three of the hospitals (Noarlunga, the Repat hospital and Flinders Medical Centre) all work in conjunction here! so I guess that is how that hospital in this new area knew about that previous diagnoses).

    I dont know what the third way was as I didnt stay on track and ask.. and she didnt say.
    ........

    She reassured me that she doesnt think Im getting Alzheimers as those have mood issues and lots of other issues that I dont have (cause Im sticking to my diet as well as I can).

    She did say something which upset me some.. she wants me to go back to the hospital and see a senior dr there again (that dr was nice but he refered me before and that was then when I ran into trouble). This is the hospital in which the head nurse made fun of me and mocked me over my MCS. I really really do not want to go back there. At this point I dont know what to do as my GP says we need that doctors help as he's in that hospital system.. so we need him to make sure all of the hospitals will make sure Im treated right when Im ending up in hospital.

    Everytime i think of that hospital I feel very upset as I think of that head nurse teasing me and trying to get the other nurses to join in. (I still havent put in a written complaint over that incident yet).
     
    Last edited: Jun 20, 2014
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  7. taniaaust1

    taniaaust1

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    OH NO not another change of personal!

    Im so very sick of trying to constantly advocate for myself.

    A couple of weeks back, after being with them since the start of the year, I'd finally got throu to the one dealing with my case at the home support agency about how Im needing more help and that DisabilitySA have said that if there was issues the support agency would ring them (hence disability services wont listen to me). Tani the one who organises things for me at the home support agency briefly spoke to one of my workers who was at my place at the time and backed me up on the phone but Tani she'd investigate the situation more and needed to talk to my workers without me being present. So Ive spent the past 2 weeks waiting for this to occur, asking my workers each time they came.. "Has Tani spoken to you yet?" only to here "no not yet".

    Today I find out that Tani is gone, left the position and someone else is yet to be appointed in her place (so of cause no one down there knew what she'd said to me she'd do). Im back to square one. This keeps on happening to me as people in gov agencies keep on changing so nothing is ever sorted out!

    Today as I needed some crickets from my frogs and I'd been without a DVD player for near a couple of weeks (mine stopped working the day after the library did a special delivery of DVDs to me).. both things werent available at my local shops so it meant a trip to the shopping centre a little further afield, to do this, we werent going to have enough time unless we left my dishes on the sink for a whole week. So I rang the support agency up upset asking if both my workers could each stay on for an extra half an hour some how or they would be going over time. (this is when I found out that the person who deals with me (Tani) had left).

    Someone I didnt know said yes but they may need to take it out of my Friday support time.. to which I replied I will be needing that time as Im short that day too, so she said she'd ring DisabilitySA and see if they could give me an hour extra time this week. umm I wonder what will happen there, this is the first time the agency has said they'd do this.

    Anyway.. things really screwed up today (things screwed up yesterday too, all three things my friend yesterday was trying to help me with, didnt work out so still need to be sorted). Today just after I made the desperate call asking for more support to take me shopping today, my bank card just after that phone call broke in my hand!! So we ended up having to go to the bank to apply for a new one. While there I found out I've been lately being changed a lot for once of bank fees, everytime I get money out of my credit card, I didnt know I got changed a fee on top of the interest.

    Next while still trying to sort out the bank, I realised I'd forgot to bring asthma puffer (I had an asthma attack in the middle of last night so had grabbed my puffer out of my handbag and it was left by the bed), so a trip back to my house had to be done.. all before we could go shopping. So all the extra time I'd requested had then been gone due to all this stuff going wrong.

    We still went to the place to get shopping thou (my frogs needed those crickets) and finally got a DVD player (my TV in my loungeroom which has an aerial on it to watch TV isnt working either.. and the other TV in the bedroom which my DVD player goes onto, doesnt have an aerial so I cant even watch TV .. and due to the dial up connection Im on, I cant watch anything moving on my computer, so I was very desperate to get that DVD player).

    Turned out both my workers even with the extra time given to me (which could be coming out of my Fridays support time) worked an extra 30mins on top, so this time now needs to come out of Fridays support time which is now already half gone without even taking off the other time which would leave me with none at all support on Friday..which would mean a whole week again without my dishes being done. (Im so fed up with this situation!)

    Anyway. I hate these personal changes which keep happening which keep leaving me back at square one and back to trying to advocate for myself at the start all over again! Its chewing into my health so much.
    ........

    Today I didnt end up sick after shopping (so far so good **fingers crossed**) cause I stayed in the wheelchair and also didnt do anything at home while the workers were doing my dishes.
    ............

    I do have some good news. My family has been seeing me a little bit more or offering to take me out with them. My sister rang the other day to ask me if I wanted to come to the beach with her.. I would of loved to do so but unfortunately I had to say no as it was the day both my support workers come to take me shopping. On the weekend my father who has only ever been to my place once before, showed up to visit me (its seems he may of gotten over our past relationship issues?). So even thou i dont get help from them.. this is a start.
     
    Last edited: Jun 24, 2014
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Goodness, Tania - I can't imagine a bank card breaking! The ones in the UK are so tough you need strong scissors to cut them up after getting your new one.
     
  9. taniaaust1

    taniaaust1

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    I wondering if I squeezed it in anxiety (even the bank person was surprised about it). I was debating at the time whether to make my support workers get my wheelchair out the back for me.. it was miserable weather, or whether to send them into the shops to grab something or to chance it to just grab the one thing I needed from that shop (and on top of that was thinking of "what if disability services then see me on my feet" they've made me paranoid). So I was stressing and then suddenly the card I was holding snapped.
     
  10. taniaaust1

    taniaaust1

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    Another issue today.

    I had a specialist appointment tomorrow, along with also having an appointment with his nurse for allergy testing. His clinic then rang today to inform me that they needed to cancel the appointment with him as he's sick and wont be well enough tomorrow.

    Now this is a HUGE problem for me as my support to get to medical appointments runs out the end of this month and this has meant they cant now get me in till next month and I now cant get there then. I then tried to ring my advocate about this but she's away today so I had to leave her a message to ring me.

    I said even if I cant see him, I'll still go and see his nurse and get the allergy testing done as if the time isnt used, its lost anyway (as it doesnt carry over into new month).
    ...............

    Im also looking into currently teaching myself how to do saline IVs and getting all the gear for it http://forums.phoenixrising.me/inde...do-my-own-ivs-and-buy-saline-from-ebay.31073/ (Im brain dead now so need to go and rest)
     
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  11. taniaaust1

    taniaaust1

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    Update

    Things did not go at the medical appointment as planned today. I wasnt able to get the allergy skin testing I thought I was going for. (why does anything have to be so darn hard?) and I just received yet a new diagnoses to go with everything else. My brain has forgotten what it was (something Ive never heard of before with a crazily long name) **sighs** I cant even look it up now, they were going to write down the name for me (but anyway, I received this new diagnoses based on brown patches under my arms).

    Turned out I'd screwed up with Dr Gales phone call with me, apparently I was meant to consult him first before having the skin test to see if it was suitable to be done with me.. with Aspergers when he said "we'll do a skin test" (I took it to mean that) and well I just told his clinic he had said for me to have one, hence they'd just booked me in.

    Turned out I wasnt suitable for that as when they heard how severe my allergic reaction had been (my whole mouth swelling and my throat feeling funny), they said no way would they do any skin tests on me as they didnt want to risk an ambulance having to be called seeing I dont know what I reacted too. They told me that a skin test would cause the same serious reaction if they tested with that thing.

    So the only way I can have allergy testing done is by doing only blood tests for 4 things at once. Apparently our medicare covers 3? or 4? of these 4 things per once being tested (one can only get 4 tested per doctors visit) every 12 month period. (kind of stupid if one has no idea what a severe reaction was too!!). So they've given me a prescription to get a couple of epi-pens and taught me how to use it and set up a plan around that if I get another serious allergic reaction.

    Turned out the doctor was there thou he was sick, thou he wasnt seeing patients (I guess he was there trying to do catch up things).. he was hobbling around the clinic, wearing a face mask (which he occassionally took off). At one point another in the clinic came in to tell him he'd caught what he has!!! Yeah that made me feel real good. (I hope he doesnt die like my other specialist did before I get the stuff sorted out.. he did look a mess and he's not young).

    The specialist couldnt keep himself away from me so ended up coming in and out, asking me questions and saying things (this is how I got a new diagnoses after he looked under my arms). Some of the stuff he said, Im sure he has wrong.

    He was very insistant that my POTS is being caused by my insulin and metabolic issues and is convinced he can treat it throu that. (I wanted to tell him POTS appears in ME/CFS patients too but he kept on cutting me down and wouldnt allow me to speak). He didnt even seem to understand POTS properly, he gave me a lecture over sipping my drink saying it wont help my thirst sipping (when I slowly sip all the time to stop a POTS attack). At one point when refering to POTS he said something about it being to do with BP and I corrected him, no its to do with heart rate (which seemed to annoy him so I kept my mouth shut after that). Im sure thou having more then one thing which can cause POTS doesnt help.

    The support worker ended up going 90mins over time today. So I wonder the agency does about that. The specialist gave me some tests to get done including another 1hr (2hr? I havent looked yet) GTT with insulin. I dont know how Im going to get to a place to get them done. No idea how Im going to get back to him either.
    .........

    My advocate ring me back today, right in the middle of when the doctor was speaking to me so I had to tell her I couldnt talk to her due to that. So she said she'd ring back in a little while. My phone thou then went flat! so I assume she then kept on ringing me without luck. (I was still thou in at that appointment after business hours so she would of knocked off by that time anyway).

    Im going to have to now try to ring her tomorrow (she's so hard to get).
     
    Last edited: Jun 26, 2014
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  12. taniaaust1

    taniaaust1

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    I just found the name of the new diagnoses given to me. HAIRAN syndrome (HyperAndrogen Insulin Resistance Acanthosis Nigrans Syndrome). http://www.aafp.org/afp/2001/0615/p2385.html

     
    Last edited: Jun 26, 2014
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  13. taniaaust1

    taniaaust1

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    Ive been trying to find out more about HAIR-an. Here's a list of its signs and symptoms http://www.rightdiagnosis.com/h/hair_an_syndrome/symptoms.htm

    I do have 11 symptoms of it but then Ive got so many symptoms that Ive probably got lots of symptoms for most illnesses.
     
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  14. taniaaust1

    taniaaust1

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    Update

    I forgot to mention yesterday that I got my support worker to take me to the chemist and we got the epi-pens and the other drug.. Phenerqan . Which Ive been told to take up to 5 tablets if needed.

    I got given some bad news by my support worker. She has got that other job now and this means she wont be able to come Tuesdays anymore but she can work around my normal Friday time so we just made that later. This means that Im going to have to have a new worker on Tuesdays. :( (im not happy.. Im worried Im going to get stuck with a certain worker who sometimes fill in if someone is sick and who I arent comfortable with at all. She's a bit overbearing thou hasnt as yet done anything wrong but I find her being overbearing difficult and it is very likely to cause an issue).

    Anyway.. Im now trying to have to get my head around that Im going to get that worker and have to knock her back to the agency or deal with a new worker.
    .......

    This also means WHEN and IF I get more support to get to doctors appointments again, that my other worker wont be now assisting me. As the other one who works with me, she doesnt drive in the city so can never take me to medical appointments. Without having someone who knows me and knows to watch my face and warn me before I collapse, Im just likely to end up collapsing.

    Its all just more stress.
     
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  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @taniaaust1 careful with phenergan as it comes in 2 different strengths, 10mg and 25mg pills. 5x10mg pills isnt an unreasonable dose but 5x25mg pills is too much.
    Allergic reactions look at 25-50mg.
     
  16. taniaaust1

    taniaaust1

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    I got the 10mg pills.. so that would be up to a 50mg dose for a severe reaction before I'd have to go to an epi-pen.. thou the doctor said if swelling is happening very quickly (as it did), use the epi--pen right away.
     
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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    @heapsreal beat me to it re the Phenergan (a brand name for promethazine). My GP prescribed the 25 mg tabs for sinus congestion, and one of those knocked me out cold for about 12 hours and I struggled to stay awake for a further 12. I now use about half a tablet for sleep about once a week. Maybe the sedating effect isn't as powerful if you are anaphylactic - hope not; otherwise you might be too sleepy to use the epi-pen.
     
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  18. taniaaust1

    taniaaust1

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    My specialist insisted my support worker was trained to use the epi-pen too which I didnt think there was much point too as she's only with me for 2hrs in a week. (I think he missed the point that that worker is hardly ever with me).
     
  19. taniaaust1

    taniaaust1

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    :rolleyes: Update

    Was almost ripping my hair out in frustration earlier. It was the first day my other worker wouldnt be coming on the Tuesday cause of her new job and sure enough there was issues with a new person came. She arrived covered in perfume and I invited her in before I realised it (usually I would of made sure she was fine outside before yelling to come in but my head wasnt with it), I couldnt get her back out quickly enough and ended up unwell then as the pollution from the perfume.. went throu 3 rooms (its amazing how fast chemicals in the air spread).

    I had to immedately tell her to go

    So I as left feeling extremely dazed and not right in my head and upset over that this has happened yet again with someone (the most annoying thing is its usually people/agencies who's supposed to be helping me which end up causing issues like this, they do not read their notes!).

    I had the other worker here to take me shopping too but as my list was big and we certainly would of needed both workers to take me shopping so I had to change things and have now been arranged to be taken Friday. (I wonder if that has put the new worker off? Hopefully she understood it wasnt her issue but the agencies issue for not telling her.

    How this mistake was made I think it was cause my home support agency, have not replaced my coordiator yet since I rang a couple of weeks ago when my last one wasnt following up on what she told me she'd do and at that point I found out she wasnt working there no more. They said they didnt know who would replace her.

    Im certainly NOT HAPPY!!
    .........

    I tried to contact a private local lawyer today over the disability discrimination re disability SA not giving me support time enough etc and leaving me once again in the situation where Im unable now to get to any medical appointments again.. (Ive given up with the community one who just wants to sit and wait to see how things play out.. Ive been waiting LONG ENOUGH. Isnt 3 years long enough for a dept to get its act more together?).. thou Ive been told only the big law firms would probably take a case on like mine seeing I cant get legal aid due to it being against a gov dept and locally its only a small law firm.

    Im sick of waiting for gov depts including legal gov depts (such as the Equal Opportunity Commission, seeing the guy dealing with my case left the dept so Ive like started again there) to deal with the issues, so now are 100% sure I certainly want to take my case throu a private lawyer as then maybe DisabilitySA will finally do the right thing!. Unfortunately thou when I tried to get hold of the local private lawyer, they were out so Im going to try again on Friday (I want one of my support worker here to be able to support what Im saying).

    If the local small private law firm doesnt pan out (Im expecting it wont due to what Ive been told).. then there is apparently a big law firm opporating in a suburb next to me (thou I forgot who I got told they were so would have to research it).

    Anyway.. these are my next steps.
    ........

    I also rang my professional advocate today over it all and she's going to ring the support agency re todays perfume issue or better still hopefully put it in writing. I also told her how while none of the other things she's supposed to be helping me with are being sorted, how everything else is building up. So I told her today about the issue I had with the ambulance driver and the issue I have with the hospital (head nurse mocking) which still needs a complaint and ONCE AGAIN told her how I need help for the letter with the other health service in response to my issues with disabilitySA.

    I also got to post to her the half the letter I have done so far seeing my computer wouldnt attach the attachment to my email of it. Hopefully I remember to do that on Friday, I got to find what I did with it.

    Im concerned as I think she's doing a lot of ringing but possibly not doing many letters so I dont have everything which has been done is writing and these other places re my complaint on how Im being discriminated against.. have said everything needs to be done in writing. Im going to have to ask my advocate for a copy of any letters which she's done.. I cant remember seeing any though Ive had her since the start of the year.

    When I told her about the issue that I cant now get to medical appointments again.. she said she'd ring DisabilitySA and speak to the one dealing with my case (I forget her name) and see what they say. She said she cant promise it will be sorted out.
    .................

    My GP (Dr Jasmine McIntyre) was going to ring my advocate Leatha Henry to tell her Im needing more support with the advocacy then Im currently getting. I dont know if she's done that yet. (there was no indication she has from my advocate).
     
    Last edited: Jul 1, 2014
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  20. golden

    golden Senior Member

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    I had inklings that your advocate needed to get on the ball and pick up the pace. I hope she can and has the skills to be a proper advocate for you.

    The idea of 'doing one thing at a time' is utter rubbish in real life and this situation needs an unrelentless multi-pronged approach dealing simultaneously with the past and the present.

    Of course a good advocate will not be taken in or swayed by the bullsh*t the disability services will be spouting.
     
    Last edited: Jul 1, 2014
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