I sit & contemplate this life
With love & hate
Can you imagine? The number of times it takes to convince yourself everything is okay?
We walk a very thin line but our journey still comes to a place which finds us seeing the kindness, intelligent, creativity, beauty of every life as we move from day to day.
Yesterday was a trying day in the our #InvisibleIllness #CureGP #HR2311 #Gastroparesis #MotilityDisorder World. There are endless hashtags it seems. But we are not just #RareDisease hashtags nor are we just campaigns just as any other incurable disease community is not… We are a family! We spend our days together coming together on social media. We support each other, answer each other’s questions, we encourage each other not to give up, and we tag each other to advocate to raise awareness. In motility disorders, women are the majority of the population but these diseases do not discriminate! We lost a #GPBrother, a very kind, supportive, sweet, brother who I think of as a part of a group of #GPMuskateers (unofficial in my mind kind of one for all – all for one.. ) They have cheered each other on, lifted each other up, reached out to each other, from different parts of the world. They supported each other from a guy’s perspective trying to be Dad’s & a man’s role in this world while living with a disease which leaves you malnourished, dehydrated, extremely fatigued, in pain often, never knowing what your body is going to present you with. It is the same whether you are a man or a woman, but men have this extra mental hurdle of internal societal expectations which can often increase the mental stress which comes from battling incurable diseases. When you add to this complex situation a lack of adequate medical care, knowledge, treatments, research, availability, it further adds to an already stressful situation. Then there is the fact that while our disease is mentioned as a consideration in the Social Security Disabilities determination it is not in the Blue Book as a Designated Disease. #HR2311H.R.2311 – Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015 is sitting in committee as we speak with 7 cosponsors. We have been in a campaign to change the number of cosponsors Buildaquorum- Sign to request your Congressional Representative to Cosponsor HR2311
We must act now! #HR2311 is action. We can speak, act, clearly, with #1Voice1Cure for a path to #CureGP
What you must see & hear is this, many of us with idiopathic Gastroparesis were you! We were doing the right things, eating right, working out, happy, then this disease roared into our lives! We did not just lay down & take it! We fought! When your digestive tract becomes paralyzed progressively? It just keeps causing problems!
Please think for just a moment, if your body could not digest your food nor expel waste properly? How would you feel? How would you feel, if your insides would not work, by no fault of your own, yet you were questioned or told to do silly things “to make you feel better?” There are many pathways to this disease but no one chooses to have it! We all pray daily to be heard & for a cure! There are wives fighting for husbands, husbands fighting for wives, mothers fighting children, children fighting for their parents, friends fighting for friends, strangers becoming family online in support groups fighting for each other with every breath because we know how torturous this disease is & how much energy even a conversation can take if you live with it.
WE NEED YOU NOW! RIP DEAR GP Brother
Dedicated to Gabe