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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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    Yesterdays Neuropsychology Research Appointment

    The study should be a good one, they did many different neuropsychology tests for it and some certainly I think showed up my ME brain issues unlike the visual card memory test I got given the other week. (The visual card test the other day was one in which after seeing an object on a card for 5 seconds,after being shown all the cards, they present cards and one has to say if one saw that card before or not. With the visual memory aid help, amazingly by the third try I got 30? or was it 50? out of 30 or 50 right thou Im not a visual person at all ..every one correct..when I did that not thinking (the moment I hesitated and started to think, I got answers wrong as I got confused.. if I threw an answer out without thought, i could thou get it right... I think I used a lot of my intuition with that test thou too, Im highly intuitive with some things).

    These tests yesterday thou didnt at all go by visual memory. 0ne focused on hearing things and remembering (an area I do know I have bad issues in as this is an area which does affect my life). He read out a list of words.. about one per second which was too fast for my brain thou it would of been okay for someone who hasnt got ME (but I need more thinking time just to absorb info). I then got asked to repeat back the words I remembered him saying (not in any order). I think the first time I got about 7-8 right (of I assume about 30 words he'd read out, maybe more).

    He did this again with me, reading out the words again to me (I thought he was tricking me and adding new words in as most of them I didnt at all remember hearing the first time, probably cause at one per second being too fast for my brain). The second round I got less right.. only 6 I think it was (I was starting by saying the very last ones he said and saying them as quickly as possible to try to get as many as I could before I forgot). He repeated the test the third time (still using the same words)... I got an even worst result and I think I only could remember 4.

    The more times we did the hearing memory test, the worst I got. (opposite result to when I'd done a visual memory test.. I still dont know how i got about 50/50 for that one!! I was on a better brain day but a result like that? do we have no issue in the visual memory area when we are given plenty of time to focus on what we want to remember?). I also was saying words which he'd never said in trying to come up with the words.

    Then he had me do this aweful test (it was so stressful trying to do this one that I cried a bit due to it).. where he had words in various colours and the words were the names of colours but the colours of the words didnt match the colour the word said. I struggled with just the three example ones to the point that he thought I hadnt understood what he'd explained I had to do eg say the colour of the word rather then what the word said. I had to then explain to the neuropsychologist that I was having to repeat over and over in my head 'say the colour of the word and not what the word says" just so I remembered what I was supposed to do, at the same time as trying to do the exercise and get the colour right or otherwise I'd automatically start reading the words instead. :alien: too much for my brain.

    It took me three attempts just with the second word..I kept saying the wrong colour. Then he told me I had to do the whole page of these words :aghhh: (it was so overwhelming cause it was so hard hence tears when he said we were doing the whole page). Then to top it off at one point I even said yellow when there wasnt even yellow words on the page or even the written word yellow. One of the random breakdowns my brain has when completely unrelated things suddenly enter the picture.

    There was also various speed tests eg a page of letters and numbers and I had to see how fast i could find and draw a line from A, 1, B, 2, C, 3 etc (I think I probably did that at a normals speed, Im a speed reader so found things fast thou by the middle of the alphabet Im not 100% sure if I was getting the alphabet right.. but anyway, i dont think that test showed up much.

    Its a pity I dont get my results from the neuropsych tests as I'd love to know what they were but being part of a reseach study he said it just got all analysed together. Im soo glad thou that they are trying to look at the precise areas of our memory being affected rather then that we just have affected memories as I think it will show up much more. We need special memory tests tailored for us, to suit the kinds of memory issues which happen in ME.

    I few hours after I got home from the testing.. the ME hit in a similar way to what it had hit the day before (in a very aweful way..I started thinking that if I was ill like that all the time I'd actually go to one of those countries..is it Switzerland? and get myself euthusized..oh what is that word? when animals get put down. I cant stand feeling that sick) and I had to go to bed (I think it was around 6pm) and was there for the rest of the night. Thank God I fell asleep before the ME hit as bad as the day before... after 12hrs sleep, I woke up feeling good.

    My postexcertional symptoms hit me quite differently to what they used to do.. come on fast but also leave much faster too. I think I prefer being comatose to how it feels now. I cant even describe it.. its all all over extreme unwellness, not a pain or nausea unwellness thou there is some of that there which bothers me but its this other thing bothering me far more.. no other way to explain it them extremely all over terribly unwell. Maybe like that overall not well feel one gets with flu but heighten the overall unwell kind of feel 50-100 times, its almost unbearable so I start thinking of wanting to die to escape how unwell Im feeling. . im not even thou sure its like the flu feel (or maybe it is if one takes away the pain and the nausea and are just left with that general unwell feel timesed). I find that feeling very hard to handle.. how on earth could I explain how bad it is to a dr, I cant even describe it well.

    How does one treat an extremely unwell feeling other then by avoiding doing too much to avoid triggering it off?
    Little Bluestem likes this.
  2. brenda

    brenda Senior Member

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    Juicing fruit is a bad idea for anyone with candida or blood sugar problems. Carrot is high in sugars too. I use dried barley grass and find it very good. The best one I have used is dried barley grass juice from NOW and it seems to have a more noticeable effect. If I don't have many vegetables I make sure I have the barley grass. I have read that it is better than wheat grass for detoxification. I am sure you can get wheat grass dried and some companies dry these juices at a low temperature so the enzymes are intact. .

    Probably the size of celery heads is bigger where you are. They are pretty miserly in winter here.
    taniaaust1 likes this.
  3. taniaaust1

    taniaaust1 Senior Member

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    Todays appointment with local GP Dr Jasmine (whatever her name is, Ive her here before).

    I went back to her today as she'd asked.. telling me last appointment that she'd try to research more and possibly would give me the referal I needed. So she tried to research the compression for the stockings for POTS in her medical sites but thou they didnt mention the specifics of it, so I didnt get the referal from her **sighs.. that's 3 times Ive tried now).

    I mentioned to her about how I think my BP dysfunction issue has worsened so she took my BP .. to my shock it was 176 and that was after 45mins of sitting (all that would of set that off is just walking into the clinic and into her room and by having my legs down when I was sitting during the appointment). The first time she took it, Ive got no idea what number it was as she hold the monitor so I couldnt see it but after getting thefirst whatever it was reading she told me not to speak as that can put BP up and took it again with me not speaking to get the result above.

    She then said she was going to refer me to the hospital. sighs.. but how will I get there. It's adding to all the rest of the things I need to see a specialiist for but cant. I have a HUGE list of things I need specialists for but cant get there.. Thank you DisabilitySA for helping us disabled **being sacastic** or is it just us who have ME/CFS who you try not to help? Will I have to die before they go.. "oh we should of helped her with the transport like we do with other disabled people".
    .................

    oh.. I forgot to mention the HSCSS (or whatever they are called?? Dont know if I have that right, Im struggling I can never remember the ones im dealing with, the high up health place which overlooks the other gov health orgs in the state). Last phone call from there I got told to contact the DisabilityAdvocacy place and get them to help me deal with DisabilitySA and hence thought they were giving up on helping me..but apparently they havent.

    They are still on DisabilitySA back to sort out my case. A HSCSS? lady (whatever her name is) rang Helene (from DisabilitySA and was told Helene is on leave :rolleyes: so told DisabilitySA they wanted to talk to Helene's manager and has asked her to email me with the details on how each area of my case is progressing as its unreasonable its taking so long and I dont know how much longer things are going to take to sort out.

    The HSCSS told me that THREE of my doctors now have been in touch with DisabilitySA, all saying I need a wheelchair and more help. (How much does it take to get action from our states disability service as far as ME/CFS patients are concerned.. so shocking that I took things right to the top (with the help of a dr) in April and I still dont have the things I need yet). Poor any of you out there who havent got drs trying to get the state services to meet your needs. You'd be left to die if it was up to the state.

    I got to go ahunting for an email from DisabilitySA and get back to HSCSS if they havent emailed me yet, Im too exhausted after todays appointment so are going to go to bed now, I NEED to go to bed and do that tomorrow (I just thought documentation here is more important. I hope if anything happens to me due to lack of medical treatment due to how those who have ME/CFS are treated, the discrimination that my situation could be used as evidence. One day there will be law suits going on as ME/CFS patients as a group need to make a stand!! If anything ever happened to me due to the gov disability/ME/CFS neglience I wish ME/CFS people could sue for me for my death).

    (I'll add the name details here later when I find them on the paper I wrote them on.. so I can the info easily when needed here).

    4pm and bed for me for the rest of the night...
    Valentijn likes this.
  4. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I, too, am glad that they are studying the ways the ME brain does and does not work. Thank you for taking part in the study. I am sorry that it is making you feel so bad.

    The high blood pressure sounds scary. Did you tell/remind the doctor that you may not be able to get to the hospital for some time?
    taniaaust1 likes this.
  5. taniaaust1

    taniaaust1 Senior Member

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    That dr has already written a letter to DisabilitySA (the state Disability service that Im a client of) saying that something needs to be sorted out for me so I can get to the specialists appointments I need. I dont think there is nothing more she can do.

    The issue with how we are being treated, goes beyond the drs but to how the very state itself is treating ME/CFS people.
  6. taniaaust1

    taniaaust1 Senior Member

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    Study Update etc

    I was picked up the other day by the research nurse/coordinator and taken to the Queen Elizabeth Hospital to have my last tests for the research study done. I had the eye appointment where they are trying to find out the state of our brain nerves via the condition of our optic nerve (had to look into a machine thing which was able to take pictures of various levels), I had the SPECT scan (unfortunately that meant I had to be injected with radioactive material again) and I had the MRI scan done. They did the SPECT and MRI back to back so I had to lay completely still for ages (one took 45 mins and the other 30mins, one of the machines was playing up.. ended up with a sore back of the head as one of the surfaces my head was strapped down too, I found a bit hard.

    I havent managed to get all the folder of questionaires for the study, filled out yet which were supposed to be handed up too, Ive been struggling with doing them (thou we were given instructions to fill one questionaire in at once, I just cant do that). One Ive spent 3 sessions on just one questionaire already as I had to stop due to the thinking involved in trying to rate various symptoms I have out of 100 when my symptoms are so extremely variable. How does one rate how severely one has a symptom which is usually 0 but 90 (and almost unbearable) at other times. I wish instead they just asked for symptom frequancy and of the severity of it variance.

    Once I have all those research questionaires down, I then will get back to researching how to try to treat my latest test abnormalites findings (from my 23andME results and my hair test results).
    .....................................

    I think Im close to suffering complete burn out right now.

    I wish I could get away on holiday for a week with no pressures upon me. Its sad as I cant even do that, Im too ME severe to be able to go on holiday alone and have no one who can go on holiday with me (I cant even leave my house alone so no chance I can go on holiday alone).

    My emotional health thou right now is really NEEDING a break, a holiday from all the pressures I have at home (the support workers are even draining to me, trying to get throu their visits ok). My sister has been on holiday for a month with her family and just has got back home, my boyfriend has been away on holiday at least 5 times overseas since I last got away (just a very short trip away for just 3 days). Its been YEARS since I got away for that 3 day holiday, a break from everything and I think my mental health is now starting to suffer due to just how badly Im needing a break.

    The first thing I did this morning was something I havent done in a while, I cried and cried and just couldnt stop crying, Ive cried my way throu this whole post. I dont feel like I can continue at this pace for much longer without a true break from it all.

    I need a few days fun away from my house and everything here but cant even do that as I dont have enough support to be able to do so.. knowing that I cant even help myself and my emotional health before it gets too bad eg full blown depression.. by going on holiday, makes me feel that right now my situation is even more hopeless. I may be close to getting situational depression again due to not being being able to meet my needs.

    If I end up with depression again, I cant take drugs for it as I react badly to all the ones Ive previously tried and being situational, I dont find the drugs helped at all either, they do not remove the terrible situation Im constantly in, they do not give me the break Im needing.. only one of my past psychologists has managed to help me with these feelings in the past and now cause I moved to the city to try to be closer to other specialists **sighs, which I still cant get too**, Im now too far from her to be able to get to her for any emotional support or work around this.

    Right now Im feeling like my situation is hopeless. Cause things have gone on far too long, Ive been fighting the services to get my needs met for so long, Im now really struggling to bring myself to check my emails to see if DisabilitySA has done what the HSCSS (not sure if I have those initials right) has ordered it to do. If they have emailed me an update on my case to get my needs met by them.

    Ive been let down by the state disability service for way too long and know if I go to my email and once again they have let me down (like has happened for years as far as the wheelchair goes!! Its only in April AFTER I complained to a high up gov org that they would even put in an application for it).. Im just going to then cry worst. Im trying to now protect myself from them by avoiding knowing negative news from them. I cant bear to see once again they havent done what they are supposed to be doing. :( Time and time again, I hear this or that will happen and it doesnt. I guess it would be far to say that my mental health HAS been affected over this seeing Im in so much fear of looking for the update Im supposed to be getting as I dont trust they at all will do it after what has already gone on. (I dont trust that they are trying to do anything for me at all as Im having to fight so hard for things and then nothing happens).

    I know I NEED to go to my email and see if they have responded or not but I just feel so stressed and nauseus just thinking about this..the lack of support and the struggle Im having.. nowdays. :( (I think I will wait for my boyfreind to get here before I look as there is a chance at this point that I could feel suicidal if they once again havent done what is supposed to be happening. I truely feel like I cant stand much more of their negligent of my health needs and them not caring how much Im struggling here day by day). They dont care to help get me to my specialists, I could say they arent caring about my very life itself and knowing that I cant take care of my own needs there.. where does that leave me?

    Im proud of myself for how long Ive stood up fighting the system for what I should have and need..but dont feel like I can do that for much longer... I can feel my mental health now falling.

    Sadly I know from the past once it does, people and drs will focus on that and my physical health needs then get even more ignored... This is what happened for 3 years in the past (with a CFS specialist then telling me we would work on helping my mental health before he tried fixing anything else.. that is why my BP issues got ignored and not looked into in the past), I mentally crashed due to trying to fight to get my needs met and then all other health stuff was ignored.. and I wasnt mentally healthy enough then to fight for my other needs.

    . Ive completely lost my faith in our disability system and in getting my needs met (the more support hrs Im needing etc which would help make my life a bit more decent). Im positive I'd be getting the help Im needing if I had another physical disability.

    How depressed Im feeling right now over it all, I'd rate at 8/10 (which is high, I feel sucidal at 9 and can start to do stupid things at that point)

    . Im using this forum more of late (when I arent having to be in bed where I hate being), not in being here more but in trying to pick myself emotionally up in keeping reminding myself that Im not alone in this. Trying to make myself feel better by trying to help others but other then this, Im not managing to do much else at all. Its basically being here at this forum, in bed or pushing myself while my support workers are here knowing that by the time theyve left, Ive probably overdone (Im trying sooo hard).. then in bed cause I have overdone after they go. Sadly that is my life.

    Im not even getting to chat to my other non ME/CFS friends online which obviously isnt great for my emotional/mental halth but Im so overwhelmed with just doing the few things Im doing already, I cant now fit those into my life... its the fight Ive had to do, its like drained the very life out of me.
    aimossy and heapsreal like this.
  7. Lynne B

    Lynne B Senior Member

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    Hang in there, Tania. You're not alone, there are plenty of us here for you. We may not be able to respond to you right away, because we're not always able to spend time here, but just keep in mind that we care and wish to help. I know nothing about the science behind our illness, but I am quite sure you will prevail eventually. Rest for now, so that will help you restore enough wellbeing that you can try again later.

    Best wishes, Lynne
    taniaaust1 and heapsreal like this.
  8. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I am sorry that you are feeling so down. Are the research tests over? Have you been able to go back on your supplements and medications?
    taniaaust1 likes this.
  9. brenda

    brenda Senior Member

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    Tania Bostrom

    I sympathise with you and know how tough it is to move house. I have been here for 14 months and just now feel that things are settling down and I am able to sort out things that got left. It will get better.
  10. taniaaust1

    taniaaust1 Senior Member

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    Yes Im back on them now .. still minus my compression stockings which I need but still cant get the referal for (without them, its worst for me). And Ive also been slowly going downhill ALL THIS YEAR due to my house move and the issues Ive had with the support around my move and the fight for it Im having to do. It sucks.. who knows how long it is going to take for me to get where I was previously and it just isnt going to be possible while Im doing too much...so I just continue to worsen.
  11. taniaaust1

    taniaaust1 Senior Member

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    Thing is no one knows if it will get better. While Im having to do too much its likely that I'll just continue getting worst, with more and more health issues developing. The way things are looking its likely to keep getting worst until I'll be back to being fully bedbound again.

    I know from my past that when I go down, it can take me YEARS to get back to the baseline I was at. My body doesnt do fast bounce backs from ME deterioriation. At this point once things get sorted (if they get sorted), I may be looking at 2-3 years to get back to my normal sick ME baseline.
  12. taniaaust1

    taniaaust1 Senior Member

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    A rejection letter I got yesterday from my states Disability Services (DisabilitySA).

    [​IMG]
    ...................................

    note.. we dont get enough time with it now to give me meal preparation support (so I dont know why it says "additional". I used to before I moved, before I got this bad due to my support not being put right back into place as soon as I moved, had enough support for a little bit of meal prep once a week or fortnight.

    The current support I doesnt cover meal prep and doesnt cover my floors being done fortnightly (which worsens my asthma and has been giving me fungal issues at times on my feet). I was asking for an extra hour per week to help cover those thing.

    Is it just me due to having ME/CFS which the state's disability service is treating like this??? or are others with MS being treated the same as me and having to miss meals at times due to being too sick to cook??? I really really want to know if Im being discriminated against or not. How do I find out?
    brenda likes this.
  13. brenda

    brenda Senior Member

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    Tania I said it will get better meaning that things will get sorted out as time goes on. It has taken me an absolute age to get straight and only now is my bedroom tidy and organised (apart from a shelf I need for my cd's) My drill will not go through the breeze block behind the plaster. I hate my place disorganised but I have had to live with it for over a year as I do not have a soul to do anything for me. Last winter was the worst I have ever had due to this last move. I really nearly got to giving up. I still have quite a few things to sort out and a pile of books in the kitchen but I am slowly getting through it all. Once my new chemical free bed arrives in 2 weeks, I should sleep better which will help.

    You should be able to find the local ME support group from the internet so you can get in touch to ask them what the situation is like for them. Just a thought but maybe the services had decided that you did not need the help you say you need when you were able to move house. Cooking a meal and cleaning a floor are a drop in the ocean compared to moving house. Without medical evidence to say you are worse now it might be difficult to back it up. I had to miss my consultants appointment so was able to use that and I guess my GP saw I looked worse.
    taniaaust1 likes this.
  14. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    The letter says that your request has been placed on an unmet needs register, so perhaps they do believe your need is real?

    Getting back on your medications and supplements should get you feeling a little better. Focus on taking care of yourself and let finishing the move-in take however long it takes.
    Valentijn likes this.
  15. brenda

    brenda Senior Member

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    That could be just a put off. In my country they would do this. Tania how about calling a family meeting and having something prepared for them to explain about the situation you are in and your need for help? Maybe they can chip in to pay for house help until you can get the services providing more? If you can work out beforehand how much it would cost for each of them until the situation improves.

    Another idea is to get in touch with a local Evangelical Church and ask the minister to call and explain your situation and ask if there is anyone who could offer a couple of hours of household help a week with further help to get the services provided. Maybe an older member has time for this.
  16. Valentijn

    Valentijn Activity Level: 3

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    Find a local or Australian MS forum and take a look.
    taniaaust1 likes this.
  17. taniaaust1

    taniaaust1 Senior Member

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    Hi, I'll comment more on what you said later as Im short of time right now for what I want to do before hospital appointment today but did want to comment on one thing right now.

    I never did move house myself (I was able to do very little.. when someone says they "moved house" that just means they changed houses/moved and not necessarily they did it themselves). I used about 6-7 people to move and actually lost the first house that was arranged for me to move into as I couldnt get the help to move, I keept trying and trying to seek help till the deadline came and it lost that house. I also had to end up paying for weeks for both houses and extending this, when I was moving out as even with that help it still took ages (as people were just helping me a bit here and there, I had no one to just come for some time more then one day running).

    I almost lost the last house too, the disability service was trying to help arrange to help me move but the application for that funding were taking so long..hence I lost the first house I was offered and almost the second and what was to be the final one I was to be offered (government housing, you only get two offers too.. if you dont do it, you then go back onto a years emergency transfer waiting list.. I'd already spent years on that emergency list). My family only stepped up and helped when I almost lost that second house as well.
  18. taniaaust1

    taniaaust1 Senior Member

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    As Brenda says, they do that as a "safe" put off. That way they also wont look too bad about refusing to help (esp when it may later be proved they really should of helped).

    Unfortunately things like my methylation supplements, nowdays take a couple of months or so of being back on them before I notice those helping me but yeah, those meds thou (florinef/clonidine) kick in fast so are a fast help.
  19. taniaaust1

    taniaaust1 Senior Member

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    :confused: Very quick update

    Ive had no internet connection for a while, since the 24th and only is back on today (hopefully it stays on).. as our main phone provider (Telstra) who I have my dial up connection throu, had some fault which affected ALL dial up internet connections in my state (SA) and many other Australian states too. I even called in and had to pay twice computer repair guy who couldnt work out the issue, as the fault throu it was on the providers end, connected to ones home page but then one couldnt go any further so it made it look like ones computers modem or something like that was faulting rather then a provider issue (so many people would of ditched their old computers not realising it wasnt the computer till they got a new one). Shocking service but as the compension for it will be one months free, I cant right now change companies.
    ..................

    Medically, things for me are worst. The research study is finished and my results were terrible. The research nurse said my orthostatic hypertension which I'd told her goes up to 170/138... she said my results were "worst then I thought" but didnt tell me the readings (so who knows what readings they got from me from that 24hr monitoring!! I should of asked her if she could of did me a printout as she was putting the machine readings into her comupter). Anyway..now I wont have access to that 24hr BP monitoring result till after the study is completed. (Today Im see a specialist at the hospital for my orthostatic hypertension as recently my new GP saw it and got worried too.. Im nervous as heck about the appointment today.. will the specialist even know a thing about ME and orthostatic hypertension? Dr David Bell gives his orthostatic hypertension low blood volume ME patients saline IVs)

    Secondly.. the research ME eye scan..showed my eyes having issues, so the research dr refered me to a hospital eye specialist who he's carefully choosen as this specialist specialises in "unusual" eye problems. I got told my discs were "bulging" (does this mean that my eye sight may be at risk of suddenly being damaged due to pressure in that area?). Is this a new ME thing found? (the research study using that special eye scanner I think is the first ME study to look at that)

    Ive looked up where the eye discs and they are where the optic nerve comes in right behind the eye.

    DisabilitySA got physio out to access me. physio was from ASSIST. The physio was shocked about the lack of help Ive been getting from DisabilitySA and is going to do them a letter about it. The physio wanted to put in for more Disability aids for me then I'd requested, she actually was aware of how being as bad as I am, affects other things and pointed out how much of what I was being forced to do, isnt nice cause I dont have the aids which I should have (eg having to shower on the floor).

    My emotional/mental health is declining due to all the stress and lack of support, my anxiety level over it all is terrible (affecting me sleeping etc, Im constantly anxious about life needs stuff which Im not getting).. Ive self harmed last night (something I hadnt done for AGES)..but Im so so stressed out due the fight Im having to do with disability system here to get my health and other needs met so trying now to use self harm to get my mind off my issues. Im going to have to try to hide my arm today at the appointment or they will probably just think Im a mental health case.

    .. got to go and get ready for the appointment. (first specialist DisabilitySA has agreed to take me too but they probably only did as I think I'd told them I'd rang hospital social worker over it and booked a phone appointment. The social worker had said that DisabilitySA was responsible for helping me get there and I may of told DisabilitySA that.. anyway, they've approved for the first time to get me to one specialist appointment).
    Last edited: Nov 7, 2013
    aimossy likes this.
  20. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    Todays hospital appointment with new specialist re my BP issues and POTS

    It went very well, the specialist said he found my case very interesting. The nurse spent 20 mins or more taking my BP in different positions before I saw the dr and said she'd never seen a persons BP going all over the place as mine was. It was 140/100 when I was sitting and when she got me to then stand, she couldnt my pulse at all with her fingers and couldnt get a BP reading at first either..after many tries she finally got my BP to read and it was crazily 140/20 (right when I had a head spin.. I rarely see readings like that myself coming up on my own monitor, just occassionally catch a ditch). My POTS thou wasnt showing (it usually doesnt when my BP is wacking badly out but I did notice that she didnt have me at rest for long enough laying before she got me to stand, I could feel my system hadnt settled down from the previous standing up testing).

    She took all my other details too for the specialist and then I saw the specialist for about 20 minutes in which he further was taking my BP (no idea what it was doing with him). I lucked out at that point as he wanted me to put got me to put on a hospital gown which then made me extremely hard for me to keep hiding what I'd done to my arm last night during my extreme anxiety and fear at seeing a new dr (I feel Ive truely been tramatised by bad doctors in the past.. that on top of the stress Im having with the disability service.. its all too much). I kept trying to hide it (Ive had doctors in the past think something like that was done for attention so that was another reason why I didnt want him to see) but was screwed when he started raising my arms up (taking my pulse in both arms raised and not raised laying positions)

    Thank God due to the BP readings already done showing a lot of abnormality going on (as well as other abnormal test results dr had sent to him) that even with that arm the way it was that he couldnt say the issue is just in my head. The only comment he made was "What have you done to yourself!!" (hopefully this wont result in me being refered to a psych. I could do with going back to one due to my extreme current stress levels over disability services lack of help but the only one I'd like to see is my old psych.. I couldnt bear going to a new one and risking a bad one).

    Anyway he's very interested in my very unusual case and looked at the info I took in too about POTS and orthostatic hypertension which a person can have together (unlike the last hospital autonomic specialist who just had stated it just wasnt possible and wouldnt listen to me or test me properly). Im now being booked into my very first tilt table test (something I'd been trying to get for SEVEN years, since Ive known Ive had severe autonomic dysfunction). Dr thou was saying he doubts I have POTS as he didnt notice it today on his tests, but I know it was cause my body usually either does the weird BP stuff or does the POTS stuff. I guess my POTS may be missed by him if my body is showing severe BP abnormalities again when the tilt table test is done. **fingers crossed I'll be in POTS mode instead that day" so both things get diagnosed.

    big issue once again will be.. how will I get to the appointment for the tilt table test? and after that the specialist wants me to have another appointment to see him again. (Im probably going to need to involve the hospitals social worker to force the states disability service to transport me there again). Its sooo very stressful (and damaging to me in ALL ways) how hard I had to fight (all year) to finally get a result of being taken to just one specialist appointment.

    I also have been given blood tests I need to go and get done locally (and also hospital asked me to go back to the local GP and get another referal for the specialist as I'd been sent to a duty specialist and if his name isnt put onto the referal, it means I'd end up seeing whatever specialist was on duty at that time (so that means more support time pulled from my basic home care needs which already arent enough time to meet, to be used for those things).
    Last edited: Nov 8, 2013
    aimossy, madietodd and Valentijn like this.

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