The More You Know About Sarcoidosis, the Better You’ll Be

The More You Know About Sarcoidosis, the Better You’ll Be
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In order for me to do better, I have to do better for myself. That’s one of the obstacles we face when living with this “inconvenience” called sarcoidosis. One day, we’re feeling good and like our old selves. The next, we’re doing the opposite of what our healing requires.

It’s a delicate tango we live with, but over the years it becomes more of a structured waltz requiring discipline, patience, and self-deprecating humor. And I’m hilarious! 

This week, at the suggestion of my primary pulmonologist, I reached out to another hospital to discuss my pulmonary sarcoidosis. I was frightened. I’m not sure if I was afraid to make the initial contact or hear their response. Whatever the case, I’m proud of myself for taking that first step.

I finally got the nerve to reach out, and it wasn’t as bad as I expected. The hospital representative took down my information and said the hospital would need my medical records upon evaluation.

That afternoon, I went out to make copies, only to have the customer service person mix up the order of my paperwork. Ugh, this can’t be happening now! I collected my paperwork and headed home — $4.45 in the hole. 

The next day, I was preparing to fax my paperwork to the new lung center when the coordinator called me. I started laughing, and told her I was about to fax the paperwork to them. She laughed, and said I didn’t need to because my pulmonologist sent everything over. I was relieved they didn’t waste any time reaching out to me.

I remained on the phone to answer some additional questions. She mentioned I may have to repeat some of the tests I’d taken earlier this year. I thought about all the blood tests I did in January. Talk about an awakening moment.

We ended our call, and I sat at my desk for a moment to digest everything we had talked about. I became nervous and uneasy. I haven’t discussed my medical issues with anyone outside of my medical team and my close circle of family and friends. Maybe I should view this as an opportunity to grow my medical team. Who knows? I needed to calm down and not overthink it.  

As I’ve mentioned previously, you need a solid medical team on your side. I’ve built a solid team, and I’m open to their suggestions and advice. On the flip side, they trust me, my concerns, and my knowledge of my body. If they collectively think I should pursue other opinions and other resources, I shouldn’t be that concerned.

As my lead doctor once told me, “They may have had patients like you and can offer other treatments that could prove beneficial to your improvement.”

I initially felt like they were abandoning me, but that was not the case. 

I’ve always struggled when others faced health problems, including my mom, whose lifelong health issues became more serious as she grew older. When she had open-heart surgery, I was all out of sorts. This strong, humble, and tireless woman who took care of my brother and me as a single parent was reduced to relying on others for help. That’s my biggest fear: losing my independence and relying on others to care for me. 

Like my mother, I continue to keep doing things for myself because I’m living on my terms while acknowledging my limitations. You gotta keep moving forward.

Chronic health issues are not faults that befall us; they’re life adjustments that have a way of making us stronger. When you reflect on what you’ve been through and how far you’ve come, you can handle almost anything that gets thrown your way. 

The more opinions and suggestions regarding my health, the better. I’ve been told my case is atypical. Woo-wee, I am special! Hopefully, I’m so special that I can help others like me, and maybe some who aren’t like me. In the end, if others can help me and I can help others, then this adventure was worth the trip.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.

Charlton is an independent multimedia/video producer and video editor located in the Philadelphia, Pennsylvania, area. He was diagnosed with pulmonary sarcoidosis in 2004 at the age of 40. He has worked over 30 years in advertising and educational media. When he’s not creating, he’s in the kitchen cooking. Charlton is known as a skilled pit-master, homebrewer and jazz aficionado. He hopes his column on sarcoidosis will help inspire readers to live life the best they can, and not shed any tears for this illness.
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Charlton is an independent multimedia/video producer and video editor located in the Philadelphia, Pennsylvania, area. He was diagnosed with pulmonary sarcoidosis in 2004 at the age of 40. He has worked over 30 years in advertising and educational media. When he’s not creating, he’s in the kitchen cooking. Charlton is known as a skilled pit-master, homebrewer and jazz aficionado. He hopes his column on sarcoidosis will help inspire readers to live life the best they can, and not shed any tears for this illness.
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4 comments

  1. JoAnne Burke says:

    AFter being treated for Sarcoidosis, had a lung biopsy, for 25 years at one hospital, I got mad because I could not see a Dr when I was having a bad flair, where I saw the bright white light,
    so I found another Pulmonary doctor. Well, I’ve been with this dr for about 5 years, and am treated for Asthma & COPD. Then I thought I should go to one of the Dr’s at UCSD recommenedd thru FSR, that Dr said I he thinks I have a bird disease because I have 2 parrots. So, honestly, I don’t know what I have. What would you do?

    • Charlton Harris says:

      Hey JoAnne, thanks for reading my column and for your comment. What I found interesting regarding your comment is that the docs asked if you had birds-I was never asked that question until last week when I reached out for a second opinion at another hospital. I would investigate that further since you have 2, and please share any information you gather. Additionally, if you find a pulmonary doc that you’re comfortable with stay with him and start building your medical team (pulmonologist, cardiologist,gastroenterologist, etc.). All play key roles in our unique healthcare. Good luck and continued blessings to you.
      -C-

  2. Ella Dunn says:

    I am a newly diagnosed healthcare professional/sarcoidosis/diabetic. My diabetes is 5.5 years old. Sarcoidosis is a month old. Mine came on suddenly with knots in both legs and worked it’s way up. This past week, I have developed a rash, very itchy and with different characteristics. I am a very strong person but this has just about knocked me to my knees. I have a PFT, CXR, and labs scheduled for the 28th and an appt with pulmonary MD on 11/2. Any pointers? I am all up in my emotions today. I am the caregiver, not the patient. I have been a nurse for 36 years and I don’t know how to be the patient.

    • Charlton Harris says:

      Hi, Ella-Thanks for sharing your story!
      I’ve had sarcoidosis for many years, and to be honest, when I was first diagnosed with it I forgot all about it. I was continuing to live my life as normal. However, it can know the wind out of your sails once you begin to think about it more and more which is something we sarcoid folks tend to do! As for pointers, it’s still early in your diagnosis, so that’s a good thing. Just ask A LOT OF QUESTIONS of your soon to be pulmonary team. Make sure they address ALL OF YOUR CONCERNS and answers your questions. Regarding the PFT’s, the six-minute walk is just that-just WALK AT YOUR OWN PACE. I used to think that I was being timed-you’re not, just take your time and walk as close to normal as you can. The breathing tests are challenging, but you can handle them. Just follow the instructions, and if you need to take a break or use oxygen, they’ll give it to you. . .free oxygen is win-win! Lastly, relax. Like you, I took care of family members, and now I’m the one needing help sometimes, but I’m still doing a lot on my own and I’m imagining you will be too. Don’t think too much into your scheduled appointments, it’s just a way for the docs to measure where you are and to get some sort of baseline of where you’re at. . . and they can start from there!
      Stay Blessed and Good Luck!
      -C-

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