For those with Pituitary tumours!

Discussion in 'Fibromyalgia Main Forum' started by darude, Jan 26, 2006.

  1. darude

    darude New Member

    Tumour patient inspires triathlete
    27 January 2006

    Starting from scratch with a borrowed "flood-mullocked" bike, Manawatu businesswoman Lorraine Smith found inspiration in a stranger to motivate her efforts for the Waitangi weekend SHE TriWoman triathlon in Palmerston North.

    "I've never been a sportsperson. I'm more into food and wine and social things."

    Inspired by her fiance Derrick Woods and his athletic family, she decided last September that the triathlon on February 5 was a goal she could aspire to.

    She had to start at the beginning, buying running shoes and paying for near total repairs on Derrick's daughter's bike that had been "mullocked" when the February 2004 floods surged over the couple's Bunnythorpe property.

    "But then I thought, why am I doing this? I needed to have a purpose, other than just doing it for myself."

    Having run her own corporate gift business and won the Manawatu innovative business award in 1998, Ms Smith didn't feel she needed to prove to herself that she could be self-motivated to succeed.

    She read last year about the plight of Bryony Martin, now Bryony Christie, who was appealing for money to pay for the unsubsidised drug Temodal to treat her life-threatening brain tumour.

    The 45-year-old would-be triathlete did not know the younger woman, but she knew about brain tumours.

    Her father in Berkshire, England, Norman Griggs, was diagnosed with an inoperable brain tumour, a pituitary prolactinoma, in 1979. The drugs that have controlled the tumour and kept him alive for nearly 30 years are all totally free.

    "These days he hardly even talks about it. He's 75 and gets on with life and we all tend to forget about it. But I hope it's really encouraging for Bryony to know someone with a similar condition is out there, still alive, after so many years."

    Since September Bryony has been taking Temodal, a drug she hopes will extend her life beyond the once-bleak 12 month prognosis and ensure she has quality of life as well, but which comes with a monthly bill of around $4000.

    The women met for the first time last week, and have made a date for Bryony to be present at the end of the triathlon to present Ms Smith with her medal.

    Bryony said she was amazed by Ms Smith's generosity of heart and admired the physical effort.

    "I haven't worked out for two years. But I really respect any women that have the drive to do it."

    Ms Smith has been training at the Makino and around the Bunnythorpe area in recent weeks, and has done the official course based around the Lido in just under an hour. That's her personal goal for the day, but it depends how long it takes to get through the 300m swim when hundreds of women take to the pool.

    Donations to the Bryony Martin Appeal can be made at any Westpac branch or spectators can look for marked collection points on February 5. The appeal fund is managed by trustees to pay for medication.

  2. darude

    darude New Member

  3. darude

    darude New Member

    A bit disturbing tho!
  4. darude

    darude New Member

    I'm waiting for an appointment with a Neuro Endo here in Calgary. They can't tell by an MRI and some can be cancerous. Only way is by a biopsy. ALso can really mess with hormones which can also be life threatening. I really disturbed by this so I'm having all hormones checked and another MRI and biopsy if necessary. I also have other lesins and this illness started with a thunderclap headache which lasted for almost six months. I think now that something happened with this tumour that they have missed. Only way now is to get more aggressive about treatment. This really disturbs me. I really think this is the root of our illness and if it requires taking it out and get the heck on with it.
    [This Message was Edited on 01/27/2006]
  5. darude

    darude New Member

    for wake
  6. darude

    darude New Member

    Yea you can get Cushings with a Pituitary tumour. It's the master hormone gland so can play havoc with the entire body. Can cause muscle weakness, diabetes, hypertension among just some things. I'm gonna try and get it out and if still feeling awful so be it. At least I tried. I have had Hormone problems all my life polycystic ovaries, difficulty getting pregnant (on fertility drugs) hair loss but increased facial hair etc. Now have hypertension diabetes, muscle weakness, fatigue pian well YOU know. Gotta be something to do with it.
  7. darude

    darude New Member

    There are some really good sites chat about pt's. A lot of people have been dix with cfs/fms initially.
  8. darude

    darude New Member

    for Bill

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