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
I haven’t posted on a regular basis due to my several admissions via the ER for debilitating pain and unregulated high blood pressure. My whole body is in pain all the time, but my left side seems to be exacerbated a little more than the rest. From the extreme joint pain to the burning painful sensations in my left arm. And as of last night, my right arm is starting to have the same burning pain as well. I’ve spoken to my doctors about it and they look at me like I am crazy. One doctor went as far as ordering an xray and a vascular ultrasound of my left arm. He stated that the results came back normal. Now all those who battle incurable chronic diseases know that there is nothing normal about us. Also, I still haven’t received an answer about what is causing the pain in my left side, front to back, under the rib cage. My husband and I feel painful nodules in those areas.
I have totally lost faith in the medical community in reference to my care. I go to them for answers and don’t recieved any. The first thing they do is put pain meds in my i.v. So, now I have reached out to the Sarcoidosis clinic in Philadelphia and a group called “The Grand Rounds”, which is a group of doctors from across America for answers. I provided them with access to all of my medical records which included all films. Both have concluded that my medical care here in my state of Delaware has been inconsistent. Testing that should have been done, wasn’t. And the fact that my physician’s were not communicating with each other, my treatments were not cohesive.
So, as you now know, not only were my doctor’s not listening to me, but they were not really treating me as an unique individual that is very sick.
I have been battling my illness’s for almost 19 years and my health has seriously declined in the last two years. I rely on 24hr oxygen support and the use of a walker to get around. I’ve congestive heart failure twice and a series of ischemic stroke’s and a lacunar stroke. I have been diagnosed with steroid induced type 2 diabetes on top of Fibromyalgia, Rheumatoid arthritis, Chronic Sarcoidosis, Periphial Neuropathy, anemia and Cushing’s. That’s a lot huh?
I am a person battling several auto immune, debilitating chronic diseases. I am fighting for my life. I am a Warrior.
#MarilynsFightForLifeKICKSarcoidosisCampaign #Fighting4ACure #LivingWithChronicPain #LivingWithAnInvisibleIllness #SARCOIDOSISAWARENESS #SarcoidosisWarrior #RareDisease #SupportSarcoidosisResearch #ASongForLife #FoundationforSarcoidosisResearch #FIBROMYALGIA
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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.