Losing Faith in my Doctors

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.

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Peripheral Neuropathy

So, for the last couple of days, my left arm has felt like got grease was poured directly on it. This isn’t the first time that I have felt or dealt with major extremity pain. I’ve even been to a specialist who performed both an xray and a vascular ultrasound. Both was determined to be normal. Anyone can tell you that none of my symptoms are normal. So when the burning started, I freaked out. Now the problem that I have now is that I do not trust my local ER. None of the members of my family do. So, I asked around to my Warrior family to see was I the only one suffering from this? And this was the response of the majority.

Any damage, irritation or disease of the nerves can elicit a burning sensation on the skin. The term for these different nerve disorders is neuropathy and when it affects the nerves outside of the brain and spinal cord it is known as peripheral neuropathy. It can occur for a number of different reasons, including inflammation (traumatic and non-traumatic), infection, metabolic, toxic or hereditary factors and due to nerve tumors. (I suffer from Chronic Sarcoidosis, Fibromyalgia, Chronic pain, Neuropathy, type 2 Diabetes and Rheumatoid Arthritis)

Two common causes include a pinched nerve where there is compression of the nerve root emanating from the spinal cord, and diabetic neuropathy which is nerve damage from long standing diabetes. A burning sensation may also be accompanied by tingling, prickling and numbness when the sensory nerve fibers are only affected, or there may also be accompanying muscle weakness or paralysis if mixed fibers or motor fibers are involved.

My Journey Continues

I am battling a very debilitating disease called Sarcoidosis which leaves me fighting each day to live. Fighting for my life is a strenuous task. There is no cure for this disease. I am a Sarcoidosis advocate, helping Warrior’s like myself to cope with our everyday struggles. I educate and promote awareness about Sarcoidosis and its effects on the patient and their family’s emotionally, physically and financially.

Even though I smile on the outside, please no that I suffer from severe chronic pain. My family struggles through the problems we face each day. But we know that with The Most High ordering our steps, while being a shield all around us; we will make it.

I use this forum to blog about my battle and also supply the latest information about Sarcoidosis as well as any updates on research towards finding a cure. https://mommielynns.com/sarcoidosis
Feel free to visit anytime. Being sick has never stopped me from being beautiful.

It’s never to late to donate which helps fund the research needed towards finding a cure. Visit the Foundation for Sarcoidosis research @ http://stopsarcoidosis.org
There you will find information, statistics, physicians as well as patient stories about living with Sarcoidosis.

Peace and blessings to all of you always,
Marilyn
#Sarcoidosis #LivingWithChronicPain #SupportSarcoidosisResearch #Fighting4ACure
#InvisibleDisease #RareDiseases

Another Bump in the Road! Looking for Suggestions??

My thoughts and prayers are with you Frank and your family always.

My life as a Rare Disease patient

As a rare disease patient Sarcoidosis, and Sjogren’s  with a not so rare disease called Parkinson’s, I deal with new symptoms everyday. My days are always filled with excitement.

Well on Monday I had a major setback in my road to “recovery.” I woke up in a very good mood on Monday then after finishing breakfast I tripped over my dog, which shouldn’t be no big thing. 

Here is the thing with that. I have terrible balance to begin with, so I tried to stop myself from falling which probably made it worse and somewhat better. I was somewhat lucky that fell through a doorway. Only my right elbow and my left ankle hit the walls. Then I twisted my right knee and my left hip hit the ground.

Ever been in a fall where you feel like everything is going in slow motion? Well that is exactly how I…

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I Feel Useless!!

My God Frank, we are so alike it’s crazy. I just had this conversation with my husband yesterday. Even though he tries to make me feel like it is not true, these are my emotions.

My life as a Rare Disease patient

I write these blogs to give you an insight into just one person who is a terminally ill patient. All of what I write is about me and not trying to speak for anyone else!

I am having many days in which I feel absolutely Useless!!! My body feels like it wants to give up on me but my brain is saying no not going to happen… I am wondering will I ever have a day in which I can do anything anymore. Yes I do things, but I am doing these things in spite of my body! If it was up to my body I feel it would say done… I don’t want to say I am giving up but what your mind and what your body says are two totally different things.

I am always tired, hurting and emotionally drained. More than usual now. I know I was…

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A Doctor Appointment that Makes You Think

My life as a Rare Disease patient

So lately the pain for me has unbearable. The last three weeks have been nothing but pain, stomach problems, shaking, extreme headaches and dizziness. That doesn’t even touch the mental aspect of this.

The realization really sit in today when you go to the doctor and they say here is some Vicodin to hopefully ease the pain! They also put me in physical therapy and talked about medical Marijuana.

There will be some that will say good at least they are doing something about the pain.

But then the next words out of the doctor’s mouth ” All we can do now is to try to make you feel as comfortable as possible because there isn’t much else we can do.”

When you hear that the reality of terminally ill diagnosis sets in. I have been trying to get through this, but hearing this today made it harder mentally than…

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Another Days Journey in the Battle of a Sarcoidosis Warrior…

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