Stand Up For Sarcoidosis Awareness

We have two options, medically and emotionally: give up, or fight like hell. Unite for one, unite for all. After a Sarcoidosis diagnosis — whether it’s your own or that of a loved one — the right information can be one of your most powerful weapons. Sarcoidosis is often misunderstood, there are many misconceptions about this disease. But education is the best defense. Finding a cure is our goal, spreading awareness plays a role. A brighter future for all we all secure, if everyday we keep seeking a cure. As long as we have HOPE and each other to help us cope, we all can be better together.

Sarcoidosis didn’t stop me from being me, it helped me find who I am and what I want to do with my life. Time is shortening. But every day that I challenge this Sarcoidosis and all of it’s unwelcoming friends and I survive, is a victory for me. A person has 1000 wishes. A Sarcoidosis patient has one, “To Get BETTER.” Once you choose HOPE, anything’s possible. People will never truly understand what it is to fight like hell to win a battle. Not until they are faced with the words, you have Sarcoidosis.

Thousands of individuals are diagnosed with Sarcoidosis. Even those who aren’t stricken with the heart of the illness are touched in some way by the deadly disease. Sarcoidosis is something that will show how strong or weak a family, relationships and friendships really are.

“Dear Sarcoidosis, we as Warrior’s are stronger than you. You may be winning the battle but we are determined to win the war. For many Sarcoidosis comes with a lifelong battle, just like life. It comes with battle against a life threatening disease, when life is a continuous battle against the restrictions set by fear and hopelessness. It comes with life altering conditions that may shatter your world to the core. But while Sarcoidosis is a word, it is not a sentence “

Next time you feel yourself getting annoyed about your bad hair and nail day, bad traffic, shitty bosses, and screaming kids, just remember there’s somebody going through a flare-up, indescribable pain, weight gain, hair loss, loss of breath, severe depression who would welcome and gladly trade places with you. Pain is nothing new to many Sarcoidosis patients. Of all life-altering disease, Sarcoidosis is one of those which subjects patients not only to a wide range of painful and exhausting symptoms but also to a wide range of emotions.

Sometimes in our lives we reach rock bottom. We experience what we call HELL. For each of us it’s dressed up differently, but for all of us it is dark, tough and devastating. This HELL can be our awakening. Some people call it a breakdown; I believe it is a breakthrough. Being diagnosed with Sarcoidosis comes with a lot of uncertainties. It comes with a baggage that is bound to test your very character. Sarcoidosis is not the end of your life; it actually marks a new beginning. You should not let this disease rule over your life. It has to be fought, not feared. It can be handled and it can be battled with. Many people have done it, many people have survived it, and so can you. The main message Sarcoidosis patients is to convince you that You Are NOT Alone in this fight.

Sarcoidosis has threatened many lives. But must it remain a threat? Succumbing to this threat will only make you a slave of fear, fear for your life. The thing is that you can fight Sarcoidosis, no matter what form it shows up in. People have done it and do it every day. It may be a very serious disease but on the other side, spending your life with this disease allows you to realize how fragile and precious life can be.

So please keep in mind that Sarcoidosis is not a joke, so don’t treat it like it’s one. Fighting today for the chance of a cure tomorrow. Many of us may be in some form Disabled … But don’t for one minute get it twisted for we are very well Enabled! While everyone’s journey is unique, knowing that others before you have been through something similar can give you the strength encouragement motivation and inspiration you need to keep everything in perspective. We are NOT just Thriving, We are Surviving and Purple is our signature color! Life – A Race Worth Fighting For!

Purple Power!!!



Sleepless Nights…

Sleepless nights…

When those who don’t understand say to you, “but you don’t look sick” or “you don’t look in pain”; God hold my peace. NO, I do not wear my disease across my forehead because I don’t want that to classify who I am.

Sarcoidosis has taken so much from me, but I will not let it control my life. I want to live to see my children’s children. I WILL live to see my children’s children.

My mind is going 8000 miles a minute. I cannot close my eyes and just relax. I am constantly trying to think of different ways to bring Sarcoidosis to light. Thinking of more ways to bring awareness about Sarcoidosis to print, media and more importantly to those closest to me. Those who have watched this disease take a toll on my life for the past 14 yrs. I’ve never seen a day of remission. Painful to the point of needing assistance to get around. Causing me to require oxygen assistance 24 hrs. a day and using a BiPap with oxygen support to sleep.

Again, “I don’t look sick” or “I don’t look in pain?” Trust you me, I wouldn’t wish what I live with on a daily basis on my worse enemy.

I have joined up with Janine’s Sarcoidosis Outreach Foundation and the Foundation for Sarcoidosis Research to get as much information as I can out there and to help raise funding for Sarcoidosis research.  Hopefully my blog can reach the masses.

Til next time and maybe after a good nights sleep, pray for me as I will always pray for you.


Possibility of heart involvement…

Hello everyone,

First off, I am sending out prayers for everyone that has been or is currently being affected by Hurricane Arthur on the East Coast.

Now for me, latest visit to doctor states that there is a strong possibility that Sarcoidosis is now attacking my heart muscles. BP has been elevated and labs have come back showing it also according to my doctor. I am now scheduled for an echocardiogram to validate it further. My physician has asked that I try to stay in a stress free environment and get plenty of rest. Meds have also been adjusted because of the overall pain in my body.
Having just loss my sister to cancer a few weeks ago, I am scared.

Please keep me in your prayers.

Love to you all,