Story about Sarcoidosis , Sjogren.

I may have sarcoidosis but it does not have me!

Feb 8, 2018

Year Condition Began: 2008


My name is Barbara Weber and I suffer from this disease called Sarcoidosis. It affects your body’s organs for example skin, heart, kidneys, but mainly the lungs. In people who have Sarcoidosis, the inflammation doesn't go away. Instead, some of the immune system cells cluster to form lumps called granulomas (gran-yu-LO-mas) in various organs in your body and can make the organs not function properly.There are many celebrities that suffer like Daisy Fuentes, Karen Duffy , Tisha Cambell, Floyd Mayweather and sadly some that have died one being the late "BERNIE MAC". Some people have never heard of this disease. 

I have been battling Sarcoidosis, and Neurosarcoidosis ( a neuro form of Sarcoidosis that affects the brain and central nervous system ) since 2008. It all started with uveitis of my eyes, then after many tests and biopsies mri's showed lesions in the brain, spine, and lungs. Its not cancer but you can die from it if not treated. It is very similar to ms and like other diseases there is no cure. I was able to beat meningitis twice, which is a  complication of this disease. I was forced to give up my career of being a cosmetologist in my own salon. One day l look fine the next day I am struggling to breathe! I would love to get awareness out there as there is little known  about  this disease. Every other week I get 5 hour infusions for three days in a row through my medport in my chest and once a month I get Remicade which is also 5 hours. So I get ONE WEEK OFF A MONTH FOR NON MEDICAL STUFF OR JUST RECOVERING FROM THE TREATMENTS. I JUST RECENTLY GOT DIAGNOSED WITH SJOGENS AS WELL, THIS USUALLY COMES WITH SARCOIDOSIS. 

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I was asked how has Sarcoidosis impacted my life? Well here is your answer...

 

How has it impacted my life? It took everything I love and destroyed my body, left me unable to care for my granddaughter, took my taste buds , my sense of smell, my independence,  finances, career, health, friendships, driving,  my own breath, social life,tried to destroy my marriage, turned those of us that suffer into lab rats ,and changed  my life to revolve around the medical field and make everyone that knows me worry. 

  WHAT IT DIDN'T DO IS STOP ME, CHANGE MY FAITH IN FACT IT'S STRONGER THAN EVER, TRUST ME YOU FIND GOD FAST! IT HASN'T STOLE MY SPIRIT, SMILE, LAUGHTER, TRUST, HOPE, OR COURAGE.  I WILL UNTIL MY LAST BREATH FIGHT WITH ALL I HAVE. MY DAD TAUGHT ME IF I WAKE UP ON THE RIGHT SIDE OF THE GRASS IT'S A GOOD DAY. Here is a website that will explain this DREADFUL DISEAShttps://www.stopsarcoidosis.org 

 So here we are 2018 and I have an update. I am no longer on oxygen or remicade. I still have good days and bad days. I am better than I was but just not where I should be!!!

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3 comments
0

WOW!! I was just diagnosed with Neuro sarcoidosis after losing my hearing in my left ear. I've had it in my lungs for 11yrs. Being treated with Remicade and it worked great for the lungs. It doesn't work for the Neuro. So now I'm on steroids till they find something else. 

Commented 8 years ago Angel 58
0

I’m so glad that you’ve gotten so much better! I realize you’re not at 100%, but keep on keeping on and hopefully you will become better and better. And thank you for your positivity spirit. It’s so important while going through this that we hold on to what brings us joy!

Commented 5 years ago Rika 1930
0

I started on COPD Herbal treatment from Ultimate Health Home, the treatment worked incredibly for my lungs condition. I used the herbal treatment for almost 4 months, it reversed my COPD. My severe shortness of breath, dry cough, chest tightness gradually disappeared. Reach Ultimate Health Home via their email at [email protected] . I can breath much better and It feels comfortable!

Commented 2 years ago Robert 9039

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