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Hi, my name is ginnierue48!

Hi l'm 69 years young.I've been married to Richard for almost 45years.We have a grown up Son and Daughter and have just become first time Grandparents to Rudi,she's 3 months old. I've been disabled since 91.I had a stroke in 2000. I have Fibromyalgia and cfs, Diabetes type 2 also Peripheral and Autonomic Neuropathy. i also have Arachnoiditis caused by the oil opaque Myodil in 1970 which has set like cement at the Base of my skull and lumbar spine,it was banned in 1987 in GB but most other countries in 1970, My mobility is getting more limited each month but,,l still try to laugh at something every day,usually at myself!!

Replies

  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello @ginnierue48 and welcome to the community. Lovely to meet you, and congratulations on your granddaughter. 
    You certainly seem to have been through a tough time.
    So how can we best help you? We're here to chat, if that's a help, or we're here to help you find the best resources, get the best advice, fight the inevitable battles with those in authority.
    Others, by the way, will be along in due course to welcome you. You are among friends here.
    Warmest best wishes to you both
    (the other) Richard
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @ginnierue48, and welcome! Great to have you here. :)
  • ginnierue48ginnierue48 Member Posts: 2 Listener
    Thanks Pippa.One of the reasons l've joined the group is to listen how others like me cope really.The problem is l was diagnosed with the Neuropathy in September 09, and told the cause was the Arachnoiditis, the oil dye in my spine and Base of my skull.It took 26 years for them to tell me but at least l knew what l was in for !!l was told then, not to look up on the Internet but to trust the Neurologist team and take things as it happened.Then in January 2010 l was diagnosed with Diabetes type 2,but on my first visit to the Clinic and Diabetes consultant he told me l was keeping my blood Sugars at border line and wouldn't need to attend again.He explained to his colleagues about the Dye etc and about it causing the Neuropathy. Anyway at my next appt in February. L was greeted by the Neurologist telling me he 'd seen l was now type two Diabetic and that it was that which was causing the Neuropathy and not the Dye,so therefore wouldn't need to attend his Clinic anymore,but the Diabetic Clinic.So, each blamed the other conditions,that resulted me seeing nobody since Feb 2010. Obviously my mobility, pain and sleepless nights have deteriorated and we moved in 2012.My GP is nice and tried to help with my Bowel Incontinence and Diabetes.But she won't refer me for my Neuropathy,she hasn't even looked at my feet,which now l can't feel at all, even though she told me by phone appointment that l have Gout now!! She just says l'd have  to wait for referral,l'd have to travel there every bappointment and l 'd be better just letting my surgery look after me. Sorry l've gone on a bit, but l've been feeling so helpless and don't know what is causing what
    I've been on some of my meds since 95 and just keep getting the repeat prescriptions,l'm now taking 8 in the morning and 11 every bedtime..So as l said l'm determined to help myself,especially as we now have a little Grandchild.I'm 70 in July but my mind feels 40,l hope l can enjoy a few more years.Thanks for letting me rant.I hope to be of some use as well as gain info for myself.
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @ginnierue48

    It’s great to meet you this afternoon.

    Please don’t worry about the “rant” that’s what we are all here for !!!!!!

    Yes you’re story is very similar to mine !!!!!

    1. Stroke.
    2. Chronic Pain.
    3. Lots off Meds.
    3. Being told 1 thing & having nothing done!!!!
    4. Bladder Damage.
    I have had surgery for this but it’s worse than ever now.
    5. GP problems, I’m now sorted & at a new practice.

    Please “rant away” we
    are a “good bunch” 

    Many thanks.
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