May I share with you a deep truth today? It may not be well said, but it is heartfelt. We are a community heartbroken by loss with two (another I saw added late in the day by another sister in the community known through their mutual doctor visits) gone from life both young in age of 22 & 25 yrs old, as I raised memorial candles? I searched for words, prayers & comfort, condolences to give both their families & friends and our own community.
We send condolences but words feel inadequate… I attempted yesterday but with three Doctor visits and travel …the truth is our (malnutrition-dehydration)- lack of ability to do what is “normal” for traveling produces “#GPFog without energy<<— this simple word is not simple at all . The deep truth is our #Invisible with #GPFog & no energy – please hear us when we say – NO ENERGY— to talk — -to think— to process–in the #GPFog the two can be intricately linked in understanding our TRUTH.
This is why we request & participate in campaigns & challenges praying they go viral-successfully for the “Criical Mass” moment! We are – so many of us – in these moments! Battling through them. No, we do not consistently, repetitively, write, or detail our constant personal issues. It would be overwhelming FOR us & FOR YOU. So – no you still do not have the full picture of my personal battle. We are #Patient/Advocates who care deeply about being our part of the cog in this community. We must add our truth , not adding my sentence.? My – Your – truth .. However messy or inadequate? We take an eagle path even on our messiest of days we are given strength beyond ourselves. We couldn’t let y’all down and not state the way forward for #CureGP #MitoCure in Memoriam in #Advocacy
Did you hear me? I couldn’t put sentences together yesterday.. & the level of my fatigue today is questionable to whether I have been successful in this attempt! I feel if we can illustrate the effects of living in our reality our Truths along with the Living #Memoriams — We will be the most powerful truth our community can fulfill in attaining #CureGP We are the #GPReporters creating our own channel. Similar to a movie – was it? “Field of Dreams” with the quote? “If You Build It They will Come!?”
Note- In a deep fatigue, & fog .. It is physical, mental, emotional, … For me — The only place I can stay ahead of this disease? Is in (if God is not your source meditation techniques can be used here — but to be honest – if you are severe GP or malnourished/dehydrated you better be well practiced so it takes lil thought – no brain synopsis to switch to– when I say no energy — I mean no energy — with high confusion– your place of calm & peace needs to be practiced & prepared) the spiritual area I keep my storehouse filled with peaceful patient love for me to achieve lower pain levels- biofeedback.
May your #Green4GP #FactFriday go forward in Memoriam for lost community sisters & advocacy — may we be closer to #CureGP — with Blessings for your weekend.
The World Health Observance Calendar we were added in 2016 with the immense amount of advocacy of of other #GPSisters_Brothers in our mighty #GPNation
And diligent work of www.iffgd.org along with sponsorship of HHS Dept of Health and Human Services & the work of Rep Gwen Moore & Senator Tammy Baldwin