2020 started out the same as other years, we went to our friend’s house for the New Year and we were excited for 2020. We had 2 vacations planned, one in May to Mexico with my dad, sisters and family, so all together there would have been 11 of us going. Then, in July we were going to go on a cruise with my sister-in-law and her daughter, Amanda, who was graduating from High school. It was going to be a Great year!
Well first we needed to get thru some Doctors appointments. Dr. Adam Morgenthau is my pulmonologist, from Mount Sinai Hospital in NYC. He and his assistant made appointments for me, when I saw them November 2019. Sarcoidosis is loving my body. It likes to grow and makes life difficult at times (and that’s an understatement, lol).
Sarcoidosis has been part of my life for 12 years. It actually started on the skin and lungs and now has enjoyed most of my body. It is an inflammatory disease, please look for other blogs for clarification and definitions.
Treating the sarcoidosis, we were attempting not to go straight into conventional medicine and drugs. My Health Philosopher is still working diligently to get my body to listen. We have tried many natural/homeopathic medicines, but most of the time my body was not being well behaved, and would not listen. My Health Philosopher always has his talk in January, we all come away with more knowledge and questions. My Health Philosopher is always thinking of his patients, he asks questions that someone else would be like, how does that have any bearing on anything, but believe it or not it is like one giant puzzle.
In January, I was scheduled for an endoscopy. Due to the sarcoidosis I have a 5cm Hiatal hernia and the doctors just wanted to look again at it (Yup, it is still there, lol).
last year I saw a cardiac electrophysiologist. They said that I would indeed need a loop recorder or defibrillator, but they would not know which until the doctor looked at my heart (remember I said Sarcoidosis loves my body, that includes the heart). If they put in a loop recorder/monitor, then just a week or so to heal. If it were a defibrillator, many more weeks and no swimming or lifting my hands above the shoulders. I wanted to schedule it for August 2020 (because I had vacations scheduled and intended to go swimming and hot tub, etc.). The doctor said no, and suggested to schedule it for the end of February because they did not want to take a chance. Alright, 2/24/2020 it was scheduled at Mount Sinai Hospital in NYC, but, there was much more to look at inside my body.
The beginning of February was more testing at Mount Sinai in NYC. The 1st test was neurological, a tilt test. Well, I failed. My heart rate shot thru the roof and I almost passed out. The next day were more neurological tests and a biopsy on my legs. I have been complaining about the “pain” in my legs for years (and I am a dancer/teacher and choreographer), the biopsy would be sent to John Hopkins (it will take 6 weeks for results) and Dr. Susan Shin is now my neurologist.
Then February 24, it’s back to Mount Sinai for the heart procedure. I was concerned (after all I like my heart). Thankfully, Dr. Miller, the cardiac electrophysiologist, said I only need the loop recorder. I was given instructions and the device and sent home. For anyone who knows me I have many allergies to medications, paper tape, latex and all adhesives. Even though we tell the doctors this, they seem to forget (yes, it is in my charts). I was sent home with leads glued to my body. We took pictures and emailed the cardiac electrophysiologist, and they called right away. They apologized profusely, and then I received calls from the hospital, who also apologized profusely. I just do not want this to happen to anyone else!
At the beginning of March, the rheumatologist, Dr. Sanjay Godhwani, wanted me to start Remicade infusions, hopefully to get some relief. It was approved, but then Covid 19 hit. Wow, was I lucky in the city and at hospital in NYC, I did not want to press my luck, so I put the Remicade infusions on- hold. Remicade infusions were started in October. I know I skipped from March to October, but Covid 19 deserves its own blog.
Remicade infusions, in October gave me monster headaches that never went away. At the beginning of November I was to get another Remicade infusion but my son tested positive for Covid 19 (Holy Moly it was in my house, the one thing that I didn’t want, and fought so hard to keep out). We were all scared, but my son, thankfully, had a mild case and no one in the house, or around us were infected, thank you God!
The next blogs will be about Remicade infusions, Covid 19 and advocacy. See you soon…
Sarcoidosis 