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
United front against Sarcoidosis. We’re fighting for a cure!
Trouble sleeping last night due to the pain in my left side, left hip and left knee. Pain meds do not work. Looking forward to finding out exactly what is causing the pain in my left side. I have an appointment with a general surgeon on the 24th. After three long years of emergency and doctors visits, with test after test being performed there are no answers. Physicians just prescribed more and more narcotics. I want answers not drugs to cover up the problem. My family is just as frustrated as I am. When I tell doctors or nurses that I have Sarcoidosis they just look at me like a deer in headlights. Most judge me by my outer appearance before even looking into my medical history. Let me point out that all of my doctors do not fit into this category. There are a few who have a vested interest into my health; my battle with this debilitating disease known as Sarcoidosis. Living each day in pain is not easy. It’s downright hard to smile when you want to cry. Laugh when you want to hide. This is not living, but I do it anyway.
Most recently I was rushed to the emergency room because of not only the pain in my left side, but also my blood pressures were off the charts. My primary care doctor told me to get to the ER immediately. My blood pressure at the time was 215/110. The ER immediately admistered a pain medicine called Dilautin and continue to take pressure readings every 10 minutes. I was told that my potassium was low, in which I was given a potassium pill. I was also reinformed that I suffered from chronic anemia. I knew that and had given them that information during triage. I was given a blood pressure pill and I was discharged, believe it or not, after being told that I had fluid on my lungs and my BP was 188/98. Unbelievable! 😈 No one with pressure readings consistently that high, with fluid on the lungs and my medical history of Sarcoidosis should have been discharged. This is what we Sarcoidosis patients deal with on a regular basis because of the lack of knowledge of this disease. Research is needed to not only find a cure, but also to find and implement a reliable treatment plan for all its patients. Right now the drugs being used are doing more damage than are helping.
I am now and have been seeking alternative treatments to help me find relief. I have found that accupuncture and chiropractic treatments have helped tremendously, but they are not all covered under insurance. So where does that leave us chronic pain sufferers. Please don’t say, “Pain Management.” Maybe to some, but not me. I believe in getting to the source of the problem and fixing it. I don’t believe in masking the problem with drugs.
Anyhow, til next time continue to pray for me as I will surely pray for you.