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  1. #11
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    Hi beebs. You're welcome.
    We definitely all need somewhere to come to chat or vent.

    Hugs. That doesn't sound good. I hope you don't get any tears this time.

    I hear ya on the fatigue. It truly sucks!!
    I'm ready for a nap right now but can't with DS being here

  2. The Following User Says Thank You to PurpleButterfly4 For This Useful Post:

    beebs  (01-03-2014)

  3. #12
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    This may be tmi but does anyone else suffer with regular thrush?
    I swear the last 6 months I get thrush once a month, usually a week or two before AF. I have found that the downstairs area gets very sensitive and I can get grazes easily. I've also found that I have to use hypo-allergic toilet paper because it causes me to get thrush if use other toilet papers :/

  4. #13
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    I have been in the last few months, but I had put it down to getting quite ill last year with pneumococcal pneumonia in both lungs and being on an awful lot of antibiotics all different kinds over a 3 week period and not being able to bounce back from it....hmmm. Might be worth asking on a firbo/AI forum?

    Quote Originally Posted by PurpleButterfly4 View Post
    This may be tmi but does anyone else suffer with regular thrush?
    I swear the last 6 months I get thrush once a month, usually a week or two before AF. I have found that the downstairs area gets very sensitive and I can get grazes easily. I've also found that I have to use hypo-allergic toilet paper because it causes me to get thrush if use other toilet papers :/

  5. #14
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    headoverfeet is offline The truth will set you free, but first it will **** you off. -Gloria Steinem
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    I'm so sorry to hear about your suffering lovelies chronic pain is so devastating and something a few friends suffer with with various causes, I do have one friend who suffers fibromyalgia. Have you heard about the breakthrough they made in treatment for some suffers in December? They have had sucess with human immunoglobulin injections as pain relief. If not it might be something you could speak to your care providers about, I dont know much more than that xo

  6. #15
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    I was diagnosed with sarcoidosis in feb 2005. Following that I was diagnosed with fibro, costochondritis, bursitis, sub clinical Graves' disease and osteopenia. Last year I also had a cardiac ablation due to dual pathways and my heart racing up to 200bpm for no reason. I also suffer from tremors, facial spasms and twitches but they don't know why. I've been on and off steroids since 2005 and just last night started endep (didn't have a good start, hardly slept at all as I decided not to take my sleeping tablet just the endep). I work 3 1/2 days a week and find the busier I am the better I am as I'm distracted from the pain. I'm sure I don't do as much with the kids as I should but some days I just don't have the energy to do it.

  7. #16
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    Quote Originally Posted by Pearlygirl View Post
    It just went undiagnosed for so long, contributing to this was the absence of inflammatory markers in blood tests which I now know occurs in about 10% of patients.
    This is me too. I've had slightly elevated ESR and CRP in the past, but no autoimmune markers ever. Which makes it really annoying, and which is why I call my arthritis connective tissue instead of RA or psoriatic or any of the other ones. My rheumy is absolutely sure it is Autoimmune, but after 8 years they still can't figure out which one. Kind of drives me crazy a bit to be honest - I'd rather just know what I was dealing with.

    Also, my immune system is shot to pieces, but talking to my immunologist the other day and he said there was absolutely nothing in my bloods that would point to immune system problems. In the last 6 months I've had influenza, pneumaccocal pneumonia, two other chest infections and 3 middle ear infections.

    Do you guys think that that is more of a an "Autoimmune thing", weakened immune systems I mean - and if so, does anyone show up anything in their bloods showing that your immune system is weakened or damaged?

  8. #17
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    The "overstated" breastfeeding got me thinking. How many of us were breastfed and do you think that breastfeeding/formula feeding may have someone how contributed to our chronic illnesses?

    I was exclusively breastfed for a year and then raised on wholesome no processed no junk food diet until I was a teenager.

  9. #18
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    I don't really have any issues with infectious illnesses (touch wood!), and only get sick probably one a year with a cold, but I do have allergies and endometriosis as well. Endo and crohns has been linked in a recent study but they are not sure why at this stage. I think these are all just symptoms of an impaired immune system. My bloods always come back looking good but crohns was diagnosed on a scope, it was obvious to the gastro as soon as he saw it and was confirmed with biopsies.

    As for BF, I was Bf except for a short time when mum was advised to put me on formula as I wasn't growing properly, she took me off though as I didn't take to it. Bf does apparently reduce crohns incidence though so it's super important to me that I bf my babies.

  10. #19
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    Thanks Beebs. I've asked a few ppl and Drs, they just think it's more hormonal and with the IBS for me than to do with Fibro. I think having a heap of tonsillitis crapped up my system and all the antibiotics I had to have wouldn't of helped.

    As far as I know my Mum BF me the whole time. I will have to ask her but she prob say she can't really remember. Her memory isn't so great.

    I am having an awful morning and yesterday was crap to. Yesty I woke with my right wrist hardly able to move and most fingers on both hands swollen and sore. I had the flu achy feeling as well. I also had a slight panic attack and AF started
    This morning I woke around 3:30 shivering and the left wrist paining badly and a few fingers on both hands swollen and sore. I had to get up and put on warmer clothes and I had a few crackers so I could take pain killers. Back to bed and still in pain. Tossed and turned, and I was so achy from shivering. Last time I saw the time it was 5-ish. My DS then came in about 6:35am. I dozed back to sleep and then woke again 7:35am. I had to get up to do the brekky and school run. I usually help in DS's class with literacy Wednesday mornings but I'm home now and I'm going to go to sleep as long as my body wants it. I just hope I wake up feeling better.

  11. #20
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    Ok, am back. I'm so sorry to hear there are so many of us dealing with these conditions, and I think as parents it can be especially hard.

    I actually wrote about half my story, and took a hell of a lot out, but it was still very long. I've saved it, mainly because I rarely talk about what actually made me deteriorate so badly a few years ago, as it involves a complete and utter screw up in our medical system here.
    Basically, a year that started when my wonderful GP left and the GP who took over changed everything, and ended up with me falling through the cracks, and missing out on several surgeries. One of these was covered under the Medicare dental scheme, and by the time the missing paperwork came to light, it was cancelled.
    From that year onwards I went from a slim, fit (essential for me to manage my condition), confident mother who could work, to a shell that can no longer do anything, and lives in unimaginable pain.

    In that one year due to my managed care being stopped, mis-diagnosed and placed on the wrong medication that nearly killed me, I went from 60 kgs to 85kgs. My bones started to deteriorate, and my spine curved and changed shape completely. Every joint popped when I moved, and swelled up. My muscles would spasm and twist constantly, and turning over in bed would pull the muscles alongside my spine, and the disks would bulge.
    I moved from the bed to a recliner chair, where I still sleep, as I can't lay flat. My beautiful, strong teeth (which I loved, and as a former dental nurse were immaculate) started to chip, then snap. I now have four left. The rest snapped off at the gumline, and cause constant agony. As the paperwork originally done for surgery to reinforce my jaw to prevent this went missing-twice-it could no longer be done under the medicare dental scheme, despite proof it was forgotten, as the paperwork was not "found" until two weeks after it was cancelled.

    That was a couple of years ago, and since then some things I've mentioned briefly before regarding DH happened, that threw a spanner in the works.
    Also, just over a year ago I discovered I was pregnant. We were ultra careful knowing pregnancy would be impossible due to my deterioration. But after getting a mild dose of food poisoning the day after DTD, I knew that although the risk was low, I couldn't take the chance, and also took the MAP. I then discovered only a few days later that I was that .5% where both failed.

    We were advised to terminate, but a quick look at my history confirmed I could not undergo a surgical termination, only use RU486. But it wasn't available here, and my heart told me that this baby was meant to be. The pregnancy was very, very hard. Daily self administered IM injections(lots of fun!), constant monitoring, crutches from 20 wks on, unable to walk from 30wks on, DH working as well as caring for the girls, cooking dinner (I couldn't stand), cleaning, helping me shower, dress..the whole shebang.
    However, early on in the pregnancy my GP rang a private pain specialist. This Dr takes around 6mths to get into, and costs around $200 an appt. The "pain clinic" through the public system had told me 5 yrs ago that they only treat cancer, and that both Fibro & EDS do not exist. I am one of MANY who has been referred there and told this, and it disgusts me. This pain specialist was so horrified by what we had gone through, that he treats me for free. One year on, he is STILL doing this for me. A truly amazing man.

    So, where I'm at now is using every spare cent towards a rheumatologist, who is $260 an appt. I've seen the public one before, but it takes several years to get in, then around 8-9mths for each appt. I finally managed to get a public dental specialist a few months ago, but we are working on what to do. My jaw isn't strong enough to repair any teeth & keep them. The only option is to have them all removed. However the only thing that would work are implants, which cannot be done under the public system. The lowest cost is just on $30,000. Dentures are not likely going to work, but I may have no choice. I cant really eat currently, but it will also be 6 mths between the teeth all being removed, and dentures being made.
    My pain specialist of course only deals with managing the pain somewhat, which in very hard to do in our state. Both he and my GP have said what many health professionals here have said, and that is I need to be on the mainland. Health services are dire everywhere, but here especially the specific treatments and medication I need are inaccessible.
    The very high cost of living combined with the nations lowest wages makes it very hard, not just for everyday stuff, but also because Health professionals go where the best working conditions are. My DH has an average 38 hr week job, but actually works 46 hrs a week, which works out to be just over $16/hr. His Victorian counterpart (identical position-national company) sticks to the 38hr wk, for $34/hr. This is for 22 yrs experience in his field as a tradesman.

    Two years ago I swallowed my pride and applied for Disability, after several years of the C'link social worker encouraging me to do so. This would give me access to services here that are very expensive, but are bulk billed if you are on Disability. It took nearly a full year for them to get to the application, which had pages of letters and details from Health professionals, including the 12 medications I'm on. January last year it was rejected. I appealed, as the social worker said I easily met every condition.
    I was finally contacted January this year, 1 full year later. The woman who had looked at my appeal and original application for the first time that day simply asked 2 questions. Was I missing any limbs? No. Was I in a wheelchair full time? No. She rejected the appeal, telling me that unless I met either of those criteria, I was not eligible, as that was the new criteria.
    So even though I know deep down that every health professional I've seen in the last few years, the C'link social worker, the C'link worker who initially told me to appeal as she thought it was disgusting, those around me that see me and know me, ALL of who pushed me to apply so I could access services, have some home help etc, are the ones who know the pain & lack of mobility I live with....yet that awful, rude woman in the space of 10 minutes made me feel completely worthless and a fraud.

    I try hard not to feel the anger when I think of those I know who are on it, yet don't need it. I try to remember those poor people who are so much worse off than me, and that I am lucky in comparison. I remember the young mum I met via the shelter, who was pregnant and about to have Newstart cut off due to not accepting a checkout operators job. She was found to have a brain tumour, which I believe are nearly always fatal, some months into her pregnancy. She'd recently had some form of surgery that was the only option while pregnant, and had all her hair shaved still, with a visible scar, and slurred when trying to talk. She was denied disability. I still cannot get over that.

    All I want is to be able to do normal things for my kids. To be able to cook their dinner, to walk around in the mornings and take them to the park, to take them to school, to have friends sleep over without seeing me unable to walk for the first few hours of a morning, to be able to go to fairs, markets, birthday parties with both parents, not just dad.
    I want to be able to go out in public. It's pretty amazing how people treat you when you have only 3 unbroken teeth. I feel like pulling out an old photo and saying "see? I'm not meant to look like this!".

    So that novel length post is around 5% of the story. I can't believe I've actually put even just this small part down, and thankyou if you managed to get through that!


 

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