Trouble sleeping last night…

MFL

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.

A time of reflection…

Psalms 91:2

I will say of the Lord, he is my refuge and my fortress: my God, in him I will trust.

Broke out with an itchy rash

MFL

Finally up and running. Our family’s United front against Sarcoidosis. We’re fighting for a cure!

To add along with my excruciating pain in my swollen joints, especially in both hands; now I have broke out in an itchy rash. Oatmeal bath, take me away. The question is, who do I turn to. I owe my dermatologist and I am afraid of them requesting monies that I don’t have prior to seeing me. I know it’s illegal, but the embarrassment is something I can’t handle right now. Where’s publishers clearinghouse when you need them.

Please pray for myself and my family.

Yours,

Sarcoidosis Warrior

New Sarcoidosis Information Site (provided by FSR)

This is a great site and also it provides templates for Sarcoidosis pamphlets that we can use at our awareness events this month.

http://www.chestnet.org/Foundation/Patient-Education-Resources/Sarcoidosis?utm_source=alisonpartners&utm_medium=online&utm_campaign=sarcoidosis

Also, here is a reminder for my upcoming event. Remember to R.S.V.P. to marilynsfightforlife@live.com. Also, T-shirts will be available to purchase on that day.

MFFL Event Poster 2015

MFFL Event Poster 2015

MFFL T-ShirtThank you all and have a blessed day.

Marilyn McNeill – Founder

Marilyn’s Fight for Life KICK SARCOIDOSIS Campaign

phone: (302) 521-2816

email: marilynsfightforlife@live.com

Facebook page: http://facebook.com/marilynsfightforlife

A Sarcoidosis Warriors Story – Please Read

 

A Warriors Story

A Warriors Story

BY: Michelle Sadler

Have spent far too much time shuffling through hospital bills I may never get paid off and praying for sick friends and family members, some undergoing chemo, some in poor health and some currently in the hospital, and others who have recently gone home to the Lord or are on their way. Just a little over a week ago, I got to that door with a double whammy of viruses that nearly changed my address to the other side. Those of you who know me know that I battle sarcoidosis, an autoimmune disease that has not only been classified as terminal, it has not responded successfully to traditional treatments, and has given me a hyper-immune system that will just as readily destroy my own cells and organs as an infectious agent in my body. When a bacterial infection weasels its way in, damage is done by inflammation, my doctors bombard me regularly with pharmaceuticals to try to suppress my Immune system, and then they put me on extreme antibiotics and steroids to both attempt to overcome the infection and control inflammation from my immune system. It’s a crap shoot and illnesses are extreme, long-lasting and frequent. Worse yet are viruses. The little monsters cannot be combatted with antibiotics, so it is a life or death battle with the virus and my suppressed immune system, which promptly goes to work destroying everything it comes in contact with. Its russian roulette of the micro-biologic kind, and is the primary cause of mortality when sarcoidosis finally destroys too many organ systems in its fight or the viruses win as the immune system fights too many battles on too many fronts and is overcome by disease. I was nearly overcome by gastroenteritis and viral pneumonia that kept me dehydrated, unable to hold down anything, too weak to stand, febrile with 104 temperature for 8 days that burned my skin like a sunburn, oxygen deprived, fainting, incoherent, and in excruciating pain as my desperate immune system went Hiroshima with inflammation in an attempt of self-preservation. In the few moments of clarity I had, I contemplated the nature of disease and accepted the fact that this could kill me. There was helplessness and grief for my family, and then the fire and fever and the sea of nothing would wash over me again and I would slip under, unsure of whether I would resurface or not. The hospital gave me no hope or refuge, knowing that my only option was to wait and that my only weapon was time. I did pull out, damage done, this time. I come through with the knowledge that it is only by the grace of god and the tools He has given me that I have another day with my family. There is no cure for sarcoidosis, only treatments that do as much harm as good. I find peace in my faith and the promise that when I go, this disease will no longer plague me. But as I watch the people I love struggle with illness, disease and death that THEY DON’T HAVE TO BEAR, it strengthens my resolve to share with them firstly my faith in the TRUE physician…and the tools that He has given us to PREVENT sickness and suffering. I know that I know that if I had not begun eating better and supplementing where my diet fails with Juice Plus, my body could not have pulled through last week. My doctor confirmed that my blood work had never looked as good as it did when I visited a month ago. My body chemistry has changed for the better, so much so that she thought I was getting vitamin and mineral injections with my specialists. Had those weapons not been in place to help support my faulty immune response, system failures would have followed. Before Juice Plus, the last viral assault sent me Into atrial fibrillation and I spent 2 weeks on an ICU crash room waiting for heart failure, a heart attack, a stroke or respiratory arrest from a pulmonary embolism.

If you think I push Juice Plus on every person I know and care about, you are damn Skippy. If you think you can’t afford that 2 to 3.50 a day, add up what you spent on coffee or monsters to get going, over the counter or prescription meds you take to KEEP going, or the junk food from whatever fast food joint or gas station counter you just could not pass up today. Better yet, have a look at my hospital bills or those of the people you and I know who have cancer, diabetes, heart disease, high blood pressure or any of the other first world ailments we Don’t have to develop that our busy, fast food lifestyle so stealthily gifts us with.

Your life and your health Is worth more than that. YOU are worth more than that. So am I gonna tell you more about Juice Plus and what it will do to make you healthier and happier? You bet. In love, I PRAY that you will take the time to read my posts today…to look at the research…to listen to doctors, nutritionists, and average Joe’s like me who have seen it work…and that you’ll realize that your life and your health is worth it. ♡

 

New Event for Sarcoidosis Awareness Month

MFL

Finally up and running. Our family’s United front against Sarcoidosis. We’re fighting for a cure!

 

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Sarcoidosis Group of LI Event

Sarcoidosis Group of LI Event

Listed above and below are some of the upcoming events in April during Sarcoidosis Awareness Month. If there are others that would like to be added, please email me: MarilynsFightForLife@live.com.

1. Marilyn’s Fight For Life KICK SARCOIDOSIS Campaigns 2nd Annual Balloon Release Event will be held on April 26, 2015 @ 1 p.m.

A Sarcoidosis Warrior Cry for Help

MFL

Finally up and running. Our family’s United front against Sarcoidosis. We’re fighting for a cure!

People who know me know that I rarely ask for anything unless I am truly desperate. This campaign is very important to me and I have reached out to friends and family for help. Well, I have not received the help I was expecting so I don’t know what to think. This is why there is a need for this campaign. People do not understand how Sarcoidosis affects our lives and that there is a need for awareness and education about Sarcoidosis.

This disease is very debilitating and has left me dependent on oxygen support to breathe. It has me relying on my family’s support and help with little things that many take for granted like combing my hair or helping to get dressed. There is a definite need for research to find a cure. Many patients and their families are fighting for media attention, government attention and medical attention everyday.

What this all boils down to is that I am again asking for donations to help with my campaign to spread awareness about this disease. Please click on the link below and donate today.

https://www.indiegogo.com/projects/marilyn-s-fight-for-life-kick-sarcoidosis-campaign