I’m Still Fighting On

I'm In PainI hope that no one is taking my blog as me vying for attention. No, this is my journey dealing with this disease and also to note the lack of knowledge of this disease in the medical community. Not for naught, but because we need more funding for research to find not only a cure, but also better treatments that do not cause so much harm to our bodies outside of the damage that the disease causes.

The most important thing that I wanted to share with my fellow Warriors is to fight for your life. Don’t think that you don’t have a voice. It’s your life. You know your body better than anyone. It took me to get a second and a third opinion to get action. Results were that my medical care was very inconsistent from all of my specialist’s.

The Sarcoidosis specialists requested that I receive a cardiac catheterization to find out why my BPs are unregulated. My cardiologist shot it down.

I shared with you before that I experienced two congested heart failures and several TCI’s and finally a Lacunar Stroke to say, WTH are they doing to me because it’s not working. Experiencing blood pressure’s in the 200/100s range for over three years and taking five BP medicines to no avail. Basically having a key to the hospital staying five nights or more at a time is overwhelming not only to me but also my family.

Okay, here we go. Update on my battle with Chronic Sarcoidosis. I have been recently diagnosed with Neurosarcoidosis, Cardiacsarcoidosis with damage done to my kidneys from lengthly stress from my heart related to medications. I was experiencing this burning, yet very painful burning in my extremities. Also, double vision, numbness and blackouts. See, that’s a lot. Ive experienced blackouts and numbness in my extremities before, but never to the point of just collapsing and needing assistance 24/7. I am confined to my home while I take high doses of Prednisone (no immune system) and the fact that I am very weak. Yeah, I miss my family’s visits, but they are just a phone call away. (Thanks technology 😉)

I had requested early in when I first experienced the CHF (congestive heart failure) that I have a PET scan, which is one of the best ways outside of a biopsy, to find where the active Sarcoidosis is in the body (more info @stopsarcoidosis.org). Every doctor both inside the hospital and out shot the idea down. Well finally my new doctor who is THE Sarcoidosis specialist who reviewed my case ordered one. YES!!! It was as I expected and now I have to hope that the treatments work. I don’t want to die… Especially to medical error. So now is the waiting game to see how this goes.

Remember that you know your body better than anyone. If you feel that the treatment you are receiving is not adequate, don’t be afraid to take action.

Peace and blessings to you always and forever more,
Marilyn

Another day’s journey and I’m so glad…

It’s been a while since I’ve blogged and so much has happened.

All I can say is that this disease can and will take a toll on you. I know that each person is different, but with me I have been feeling weaker and more dependent on my family to help me with my daily routines. Lately, I even need assistance climbing the stairs. My legs are like weights sometimes or completely numb.

More diagnoses, hospitalizations, testing and loss of current specialist. Yep, I’ve lost my primary care physician and my Nephrologist. This happens to me a lot. Thank The Most High for my Home Care Nurse Alicia and my Physical Therapist Mark. They have helped to make sure that I have all I need with my physician’s and or medicines. I don’t know what I would do without them.

I know that something is going on with my body and it has the doctors baffled. My blood pressure is still not regulated, my sugar is all over the place, I’m experiencing burning and pain down both arms, my weight has dropped, my appetite is non existent and I am experiencing stomach issues again (sometimes only tolerating a liquid diet). But I am hopeful that the Most High will send someone to me with the knowledge to help me and that a cure is on the way. I will not give in to the pain and discomfort. For it is written in Joshua 1:9 (KJV); Be strong and of a good courage; be not afraid neither be you dismayed: for your Elohim is with you where ever you go. So I will continue to fight on. Through it all I know that The Most High got me.

Peace and blessings to you all always,

I am a Sarcoidosis Warrior

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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