I just wanted to share with you guys about the severe neuropathy flare that I’ve been experiencing for the last 2 1/2 months. So severe that I have seen three doctors just to get some answers and some relief for my whole body swelling to the point it seeped fluid.
My legs and feet were so hard that they didn’t even pit. My husband and I didn’t think it was fluid at first. It literally felt like I had fifty pound weights attached to each leg. I have to be assisted with everything including washing and eating. This pain is extreme. My hands were the worst. They literally have no feeling in them. Typing this is very painful but I had to share my experience. My hands felt like they have frostbite and they are on fire at the same time. Rubbing them didn’t help. The only relief was to submerge them into scalding hot water. This kept me up all night. Each joint was so painful that I couldn’t even hold a fork or cup. The main problem was trying to get the doctors to understand what I was explaining to them.
So the final diagnosis was both a rheumatoid arthritis and neuropathy flare at the same time. The treatment was to put me back on 10 mg of Prednisone again. I had been weaned off of Prednisone 5 weeks before after have taken it for 20 years for my Chronic Sarcoidosis. I was also prescribed Baclofen, which is a muscle relaxer for the severe spasms that started with the flare.
The swelling has receded some and my mobility is very strained because of the trauma to my body. The doctors have all stated that is all they can do because my body is too sick. This all to say, please keep me in your prayers.
Marilyn’s Fight For Life Sarcoidosis Advocate/Warrior
Each day I wake up wondering how I am going to make it through the day. And at night I wonder if it’s my last. The pain is excruciating and the guilt of what I’m putting my family through is overwhelming. But I continue to fight on. Trusting that this too will pass. I find myself reading Psalms 71 over and over again, for in my lifetime Yahuah my Elohim has proven to be my doctor when I am weak. I give my all over to Yahuah and ask for healing from this debilitating disease and ask that he guides those that I entrust for medical care.
I have to see a neurosurgeon in July about scheduling surgical procedures on both my C-spine and my L-spine. Both areas are affecting my nerves and spinal cord. Scared? Yes I am, because of the possibilities of paralysis. Right now I am truly dependent on my family support for what many might take for granted; and also a walker to get around. I am looking into acquiring help for my entrance to be made handicap accessible.
As always I ask for prayers and I will continue to pray for you.
Peace and blessings to you always and forever more,
#MarilynsFightForLifeKICKSarcoidosisCampaign #Fighting4ACure #LivingWithChronicPain #LivingWithAnInvisibleIllness #SARCOIDOSISAWARENESS #SarcoidosisWarrior #RareDisease #SupportSarcoidosisResearch #ASongForLife #FoundationforSarcoidosisResearch #FIBROMYALGIA
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.