SARCOIDOSISAWARENESSMONTH

my beautiful granddaughter, Samiyah Nicole, who inspire me to keep fighting daily.

#SarcoidWarriorTerika #PurplePower

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  • Sounds similar to my Sarc beginnings! My fever was 105, very swollen lymph nodes in my neck. I was young with a 6 month old, thin, active and like you said. " the picture of health"! It took me 5 years, about 20 different doctors ( most of who were idiots), and tens of thousands of dollars before getting a diagnosis of Laryngeal Sarcoidosis. That was over 35 years ago!

  • Thank you Terika Forbes for telling you story. Keep on fighting! Best wishes!!

  • Thank you so very much. It is my hope that someone is encouraged by this story, to keep fighting. I know I plan to! Bless you!

  • Terika Forbes God Bless You Good!

  • Xxxxxxx Yzzzzzz continue to shine His light on us all.

  • It's twice as hard to read your story when we can relate to most of it ourselves Terika. Good luck for your weight loss. Sending my best wishes that you get your transplant and have a good recovery. Thanks for sharing. :-)

  • Bless you sweetheart. Yes, we all have a lot of similar struggles, unfortunately. I pray that whatever we all face, God gives us the endurance to see it through. Thank you first being an encouragement to me. ☺

  • Praying for you!

  • Oh my goodness. This is my first time hearing of laryngeal Sarcoidosis. What is the status of if now? How are you?

  • Bless you! Thank you very much. Bless you as well.

  • Terika Forbes Hi! Keeping you in prayer! I know a couple of other people who have had lung transplants because of Sarcoidosis. They are both doing well! The University Hospital here in Madison, WI does great work with transplants. I love how you said that your granddaughter keeps you going. I have a three-year-old granddaughter that is the love of my life. She really does make the fight worthwhile.

    In 2010 my Sarcoidosis returned after a long remission. I had to leave my job as a nurse; and am on disability. I've had a tracheostomy in the past and am very close to needing one again; and I seem to have joint pain, and brain fog -which I didn't before. I am on Remicade right now; which is keeping my airway stable.

    Thank you for asking about me. Please keep us informed on your journey...

  • I am amazed by each person's journey, including yours. Yes, my granddaughter gives me so much more reason to fight...including my four beautiful daughters. I, also was forced to stop working after my Sarcoidosis came on full blast out of remission approximately 4 years ago. I am now 39 years old and on disability. I'm on oxygen 24/7 as a result of Pulmonary Sarcoidosis. Of course, as I forestated, I am now on a weight-loss journey to qualify me to be placed on the donor list for a double lung transplant. My doctor suggested that I begin by trying to lose approximately 50 pounds before reaching out to the board. I know when consulting with one of the coordinators, she states my BMI would need to decrease first. So, I've lost about 35 pounds since Thanksgiving...it's a start! Not an easy fete while being pumped with steroids...might I add. I also have Sarcoidosis in my liver that has turned into Cirrhosis due to extensive scar tissue. I've also been diagnosed with Diabetes as a result from steroid use. I now take insulin 4 times per day. I now have Gastroparesis as a result from steroid use. I have optical Sarcoidosis in my left eye. I went to the eye Dr for my 6 months check up yesterday and was informed that I have a cataract on each of my eyes from steroid use. I'm normally in the hospital several times per year due to flare ups and/or pneumonia due to my immune system being irreparably damaged. I've been admitted 5 times so far this year. It's all a LOT! I just stay prayed up. Hearing that individuals you know are doing well after their transplants does give me hope for a transplant. I've heard of Remicade, but have never been on it personally. It is an injection, correct? I also have joint pain....chronic pain actually. It's so bad, that I have a pain management Clinic I go to every 30 days now and take an opioid for the pain. Do you take anything for your joints pain? Also, did the tracheostomy in the past help? I'll have to Google that one. I never mind educating myself. That's how I learned a lot about Sarcoidosis. I look forward to hearing more about your story and swapping info. Bless you.

  • Wow! I can't even begin to imagine losing weight while taking steroids! I'm glad you are having success. ☺️

    You really have been through so much! I have cataracts and gastroparesis also. I know the cataracts are from steroids; but the gastroparesis could be from that or from my Sarcoidosis. I have had several swallow studies because of my throats issues; and they found the gastroparesis then. I had my tracheostomy when I was first diagnosed...I was having a lot of trouble swallowing and breathing already and the biopsy made it necessary for the trach. It was about a year before I could breath without it.

    I take Etodolac, 500 mg, three times a day for pain, topical Ibuprofen and lidocaine patches on specific joints. The Remicade is an infusion - 3 hours at the hospital every 4 weeks.

    I will keep you in my prayers. Bless you too.

  • Oh yes, I agree about the Gastroparesis. I was told it was from the steroids....who knows! I was having issues swallowing a couple of years ago and my primary Dr ordered an ultrasound of my lymph nodes and they did an ultrasound of my neck as well and found 3 tumors. They removed my entire thyroid with a thyroidectomy. I thought about that when you mentioned having problems swallowing. I'm telling you...I could go on and on for days....unfortunately. What is the Remicade supposed to do? I'm sorry...that's my last question.

  • It suppresses your immune response - hopefully so you don't form new granulomas and reduces inflammation due to granulomas already there. I see you are FB friends with Markell. I've known her for years on Facebook.

  • Oh wow. I'm definitely going to ask my Primary Dr about that. Yes, we are friends from this small Sarcoidosis world!

  • Thank you so much for taking time to answer my questions. It would be my pleasure to answer any of yours if you have any at anytime. I look forward to hearing from you. Be blessed, my new friend.

  • Praying for you and all of us daily!

  • Amen! Praying for you and us as well!