I have recently developed a sensitivity to steroids (oral & injectable) so pain management is incredibly difficult.
One doctor even refunded me my co-pay after looking at my chart.
So, I am now in search of something outside the box other than biting my cheeks and clenching my fingers and toes constantly.
Humira was life changing and now I find myself once again, in bed constantly.
A quick trip to the store or a simple outing will often take me a couple days to recover. You don’t always realize how much a medication helps, until you are forced to stop taking it.
I mean come on, should you really need a 2 hour nap after a shower? I think not. And getting dressed should not be an all day event, I’m talking sweats here, not getting glammed up.
I am trying to become better at balancing things but each day brings its own set of challenges. Often frustrating beyond belief.
All I can do is hope that things will change and I will somehow be able to get Humira or another biologic, sooner than later.
I have extremely supportive and generous parents but they are getting up there in age and are exhausting their resources in order to help me with food and rent.
It breaks my heart but I can honestly say that without them, I would not have a roof over my head.
I receive just enough to disqualify me from receiving any type of state assistance including Medicade, Access or medication assistance.
When I think about this and the future it truly frightens me but for now I am grateful to have shared custody with my children, while I still can.
Planning for the Future, Click here
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
2017 Rare Disease Day Medical Research
2016 Rare Disease Day Patient Voice
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
To read about medical research at the scleroderma unit, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
|Prof Chris Denton and I, Sept 2017|
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
|Chat Magazine May 2019|
|James Carver, myself, Prof Chris Denton|
I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.
I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
|The global Raynaud's trailblazer - Dr Howell and I, Sept 2017|
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
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