3 thoughts on “CHRONIC PAIN PATIENTS – THEY WON’T HEAR US UNTIL WE YELL!!! STEP UP AND MAKE YOUR VOICES HEARD – This Saturday at The Ellipse, Washington, DC – 10 am-5 pm – It’s Time for A Change!

  1. My name is Lisa,

    I was living a normal life in 2003 – working on opening a business, being w friends, enjoy life – I didn’t even have a primary doctor.
    In August I came down with a cold, I went to a walk in clinic, now thinking back I should of just went to a doctor – after a few weeks I coughing, feeling horrible and a few different prescription – I ended up in a doctor office he told me I needed to see an Neurologist – (I had no idea what kind of a doctor was a neurologist)

    By end of 2003 – My life as I knew it was gone – there was a new me in Horrible pain morning – noon and of the nights were so Horrible I just to cry myself to sleep – I was diagnosed w Pseudo-tumor – Cerbi -had my first spinal tap Christmas eve, then a rebound headache omg the pain was horrific – constantly crying, my doctor sent me to All Different specialist and a PTC specialist at Columbia Presbyterian: They confirm my diagnose – by March of 2004 I was unable to go to work, I ve seen about 15 different doctors – then add From Fentanyl patches, Oxy, the world as I once knew it change drastically – In 2006 I went to Mayo in Minn – they confirm my diagnose, thinking it was odd I had two rare autoimmne’s from 2006 until 2009 – I was in an out of ER more times then I can count, I was giving Rituxan, IVIG Plasma, and just keep on getting new diagnose – diabetes, thyroid, CIDP Peferral Neuropathy , Small Fiber Neuropathy, I gain about 50 pounds and I was heavy before – all my friends were gone my family was questioning my health issue because I still look like Lisa, I still don’t understand why – they didn’t believe I was sick – I remember begging them to come to my Doc appointments –I lost my career, my home everything was unraveling and I was too much pain and sick to even care – – my neurologist of four years of living in the worst pain you could ever imagine living in a bedroom in my sister house – I lost everything that made me Lisa Kelly – Finally in 2009 my Best friend became involoded – I change doctors and locations – I called the chairman of the board I told him I was diagnose w POEMS Syndrome – he put me in contact with three doctors they change my life – They fully understood my pain never once question how much pain – told me I did have POEMS, and finally a cancer showed up – back in and out of the ER for IV pain meds – being admitted on the floor w constant IV pain meds – A few more spinal taps, treatments, Biopsy, Final at the end of 2014 I met with a Stem Cell Transplant doctor and her team with in – 8 weeks on my 50th Bday was admitted into hospital underwent SCT – now 16 months later – I am seeing major changes in my life – I no longer have so many health issues and OH wow my pain has subsided about 50% and trust me that is deal able –
    Most frustrating part of losing the life I once knew is HOW many people from Doctors, Nurse’s ER professional, family and friends question my pain – even after going the SCT – which is a massive under taking – why is it so hard for friends and family who knew you so well before pain – question you once your in pain – Millions of people who look the same are suffering in pain everyday – and still question something Ill never understand


  2. I wish I could go. I can no longer travel. It seems impossible now that I can get a humane prescription anymore for my chronic pain. Drs are now reducing people’s amount and taking away any chance of quality of life at all. Nothing else brings relief from my pain but pain medication. This is cruel and unbelievable.


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