Another Days Journey in the Battle of a Sarcoidosis Warrior…

#MarilynsFightForLifeKICKSarcoidosisCampaign #Fighting4ACure #LivingWithChronicPain #LivingWithAnInvisibleIllness #SARCOIDOSISAWARENESS #SarcoidosisWarrior #RareDisease #SupportSarcoidosisResearch #ASongForLife #FoundationforSarcoidosisResearch #FIBROMYALGIA

What else do I need to do?

My feelings are that, just so so. I ask myself, have I done all I can do?  Things have not went as planned. I believe I have lost faith in the people of my state of Delaware. No matter how much I advocate for Sarcoidosis and its affects on its patient’s that battle it everyday, no one seems to care more than me. I guess because I am literally fighting for my life. Each year my body gets weaker and weaker as more areas of my body are attacked. Especially this year. So I ask people to help with the various tasks to get the word out and to get people registered for the 5k event this weekend coming. My count is menial. I receive updates daily from FSR and they never change. I have invited our States dignitaries and also my medical teams. Invites sent in every means available. No responses except from one, Senator John Carpenter. His team told me that he couldn’t make the event but he would make time for me as soon as everything settled down in D.C.  I appreciated that. At least he took the time to reach out. Usually I received a proclamation by this time. None… I am so disappointed in my State. They turn out for cancer all the time. They just had a huge event for autism. I applaud both of those turn outs, but okay my cause matters as well and it is affecting hundreds of people of all ages and nationalities here in this State. We need support. Sarcoidosis is a rare disease that is unknown, incurable, debilitating, underfunded and sometimes deadly.  So am I wrong for losing faith? Having invested monies that I don’t truly have to get the word out so that we Sarkies can get help raising awareness and hopefully acquiring donations towards finding a cure; disappointment and hurt is what I feel. Like no one cares if I lived or died. 

Happy New Year?

Happy New Year 2016

Happy New Year 2016

Yes I am happy to be alive as we start 2016, but no I am scared. Why, because everything is closing in on me and my family. Shut off notices threatning the very machines that I need to sustain my life. Notices that may place me and my family on the streets. Procedures that if I don’t have can cause my death. This is what I am facing because of this invisible illness known as Sarcoidosis. So what I truly pray for during this beginning of 2016 is a cure and a financial miracle. This disease affects the entire family. My SSI barely covers my medical expenses so the weight of it falls on my husband. He’s gonna kill me for posting this because he is a very private person, but the truth is the truth. Not sugar coated. So if you don’t hear from me for a while please know that this is what we are facing. Now here is the hard part, if you can please help and donate to my campaign. Every bit helps. Continue to pray for me as I will continue to pray for you.