Sardcoidosis-My Journey

Roughly 4 months after my daughter was born in 2004, I was up at camp with my then husband and I got the worse chest pains. Every breath wrought streaks of pain through my chest. I felt like there were baubles exploding inside my chest and shoulders. Antacids just were not making it better. So after putting up with them for two days I made the decision to drive home and go to our hospital. After xrays and blood work were done I was spirited by ambulance to a much bigger hospital (Dartmouth Hitchcock Memorial) to have a CT scan.

My lymphnodes were the size of golf balls, I was put on Cumadin in case of blood clotting, prednisone, and sent home with a referral to see a pulmonologist for suspected Sarcoidosis. Sarcoidosis has no cure, it has only remission, using Prednisone. It manifests itself in many ways, eyes, lungs, skin…. in my Aunt, it was her eyes, 30+ years previous. She was given some eye drops and went on her way, never to have problems again.

Now, I am not against teaching hospitals by any means, but having been stuck with this teaching hospital for most of my life I can say for me, if I have the option not to go there, I won’t. They have their claws as affiliates in a few local hospitals as well. My dermotologist is up there, my rheumatologist is at an affiliate hospital. These two doctors are amazing. But that hasn’t always been my experience.

So for 3 years I saw a resident pulmonologist who put me through bone marrow biopsies, lung and lymphnode biopsies, sent me here there and everywhere for every result to always come back “inconclusive for Sarcoidosis”.

I was having all sorts of symptoms throughout these years that my doctors were just treating individually. Clogged salivary ducts, low blood pressure etc. Well, after 3 years of a very aggressive on/off regimen of prednisone, I got fed up. I was getting nowhere other then constant weight fluctuations, extreme tiredness in the wake of a toddler, and my bones we’re failing me. Having some background in health care has helped me in my strength to know when I’ve had enough, to know my body, and to know when to take a new route.

So I decided I wanted to see a rheumatologist. The man I met was who I had been waiting to meet for 3 years. He tied all these underlying symptoms to Sarcoidosis. He put me back on a Prednisone regimen for 2 more years. Then I decided, the pain in my bones was not worth the prednisone. My neck and shoulder were miserable, my wrist (which I had broken many years before and had always had arthritis from) never gave me a moments rest. No amount of testing for carpal tunnel etc was going to show that Prednisone was at the root of my now emerging struggles on top of Sarcoidosis.

So I drop the Sarcoidosis route for a few years. I am fed up of getting nowhere but exhaustion and pain. Until one day, my new doctor compares my pain to that of a football player who has received injuries during his career. I thought, who are you to minimalize what I am going through?

I sought out my old rhematologist to learn that he has retired, and was given a shiny new one. Who I adore! I brought him all my medical records to show him, here is osteo-arthritis in my neck c3-c6, in my left shoulder, in my wrist. Here is multiple site arhtritis. Here is my lower back, which cannot sit in a wooden chair for more then a half hour before I lose my ability to walk. My main concern: I am NOT doing prednisone, and he listened. Understandably, I am a hard patient to treat. I have asthma, I have ptsd, panic disorder, Sarcoidosis, osteo-arthritis, some woman’s issues, I am a hemochromatosis carrier, I am allergic to NSAIDS amongst other things…I think that about sums it up, I am a HOT mess!

During this time I was getting in touch with an old and dear friend who had gotten me onto what was then called Red Clover Stilingia Compound, which is now called Herbal Detox. The sum of it, is that it cleanses out the lymphnodes. Imagine the first time of me using it and after a few days, my chest, shoulders and neck were pain free because I didn’t have lymphnodes trying to bust out of my skin! And my rheumatologist listened. He’s an advocate for me going this route, and I need someone like that behind me in the wake of everything I am going through.

Thankfully I know most of the triggers for when my sarcoidosis acts up, and I can avoid them. I’ve gotten it down to 3-4 times a year instead of once or twice a month. While I am still in a lot of pain due to the long term prednisone use and its side effects, I am at a healthy weight, I have my sarcoidosis managed, and I would like to think that we will find a cure. There are two links to sarcoidosis foundations in my link sections if you want to learn more.

Peace, Love and Health


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