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Granuloma to Sarcoid: A Health Story
I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength. ~Philippians 4:12-13
A few days out from my infusion and I cannot wait. The pain in my limbs and body when I move is terrible. However, I think about my journey: where I started to where we are now. It has been a long road to get to be where I am now.
In 2016, my vision started to diminish within a few days. Thinking I just needed a stronger eye glass prescription or contacts I went to get my eyes checked by an Optometrist. As the vision continued to fade and the contacts didn’t work, I was referred to an Ophthalmologist who sent me to the emergency room to get a CT Scan. The results, a pituitary tumor pressing on the optic nerve causing my eyesight to blur and dissipate.
After a biopsy, the tumor was determined to not be cancerous although it was fast growing. They called it an idiopathic (rare to me, my own disease) granuloma pituitary tumor. Two more brain surgeries followed the biopsy. Each time they went up my nose to get to the tumor. During the biopsy they got most of it out, but it grew back within a month or two. The doctors had to go back in to remove the mass and my pituitary gland. Well, the tumor doubled inside the area within a month. They went back in and removed the mass.
Not long after the 3rd surgery I ended up back in the operating room. This time, the patch they did in my nose had come loose allowing air and MSRA in enter my brain. Let’s just say I went out of my head for a few days. I woke up tied down to the bed under oxygen. What I experienced and remembered of the events with the air in my head and what everyone else experienced was totally different. Another story for another day.
Since the surgeries due to medicine and having surgeries I have experienced Cushing Syndrome (blew up like a moon and lose strength ability to get out of chairs or walk), Diabetes Insipidus (sodium imbalance), Headaches (caused by pressure on the brain), Addison’s Disease(Adrenal Failure), three blood clots in the right leg, immune suppressed, and dealing with Hashimoto’s (underactive thyroid).
I’m still immune suppressed and still battling the other ailments except for the Cushing Syndrome and blood clots. Once they got me off the strong steroid (which is now listed on my allergy list) things started to get better, except I have stretch marks all down my torso and on my upper arms.
Through the doctors discussing my case, I was referred to a Neuro-immunologist who pieced together my health history to determine the tumor is actually sarcoid (granulomas that grow constantly usually found in the lungs, rare in the brain). The first medicine tried Cellcept didn’t work well and made me sicker. So we decided to try Remicade infusions every 4 weeks. Remicade is in the chemo family but treats Crones Disease, Rheumatoid Arthritis, and in my case Sarcoid.
A few weeks before each infusion is when I start to feel ill with arthritic pain or other ailments. Each time I let the doctors know and they get back to me fast. This time they sent me for blood work which shows my body has high levels of inflammation.
Through the pain and difficulties I am happy God, my family, friends, and medical team have been with me. I’ve kept a positive attitude/mindset since the beginning because I know God has a plan for me.