I have not written in months. The last 5 months of the year ran away from me ….downhill into a hell ride of miserable medical fallout from medicines and my insane autoimmune system. There has been a losing battle with trying to salvage my terrible teeth. My love agreed to foot the bill for a complete bottom implant. The anticipation was terrifying, but the surgery went very well. Looking back, knowing my insane immune system, it went too smoothly. Firstly, my oral surgeon and his staff are excellent. I love my teeth and was going to get the top done, but this will not happen soon, if ever.

Two weeks after the surgery, I thought a spider had bitten me. I had a weird black and red mark on my right shin. It then started growing and growing, and a similar one appeared on my left shin. The right one was about 4 inches wide and 4 inches tall. The little one was about 1.5 inches by 1.8 inches. Finally, with trips to my doctor, ER twice, and my dermatologist, it was finally diagnosed as a scarce interaction of my autoimmune suppressant, Imuran, which I took for my autoimmune disease, and the Bactrim antibiotic. A week before Christmas, I ended up in the ER in excruciating pain. I was admitted as they scratched their heads to figure it out. The dermatologist dropped the ball, and they never let us know the test results. The test ultimately pointed to the wrong condition. My husband had to go into my laptop and onto the dermatology office portal to get the test results. I was kept in hospital until Dec 22nd, and we had to cancel our trip to California for a second Christmas. This was my first stay in a hospital in Idaho and my first stay in a hospital in ten years. We had to cancel flights and reshuffle our boy’s air tickets so he could go to Christmas with our extended family, and then he came to spend time with us. We did the right thing by letting the boy spend Christmas in California because it was so dull here. Weirdly, I actually got the house decorated. I still cannot remember how.

We headed home with a ton of painkillers, wound dressing, and two terrifying black necrotized areas on my shins. The injuries looked and still do look horrifying. They are constantly changing the way that they look. I spent the following month on the living room couch with my feet up. The diagnosis was initially vasculitis, but it has been changed back to what they initially thought. It is Pyoderma Gangrenosa…..why on earth would you give something like this such an awful name. I will spare you any of the gory photos, but it was truly horrifying. This has led to a slew of regular visits to the wound care clinic at the hospital, where wounds are dressed and redressed almost daily. We decided a walker to assist might be a great purchase, and we were right.
Every step was excruciating for the first six weeks, and the walker made it possible to assist and help with chores. In the past two weeks, I have been able to walk around unassisted, and I have left the walker in the hallway for the past three days. I am virtually pain-free at the moment. All of the dead skin was debrided, and new skin is forming. It is basically the equivalent of a third-degree burn. This condition can take forever to heal. Of course I would get the rarest of reactions. We are looking at possibly a year to be completely healed if it all keeps on the right trajectory. So, that is all well and good, but the dermatologist wanted to put me on a new medication to speed up the repair. Hence, we did some bloodwork, and I went for a liver scan to check on my autoimmune disease. It appears that further damage had been done to my liver. I am so devastated. I did everything right. I have even been losing weight. I have never been a drinker or smoker, and truth be told, I have never ever been drunk, but now I am so sad and terrified that I have to deal with this new obstacle. This is soul-destroying to me. I do not know the reason for the change. I am surmising that the gallons of nonstop- antibiotics and painkillers in the hospital might have contributed.

Now to the true hero. The reason I am writing this on Valentine’s weekend and as we approach the 25th birthday of our handsome, funny, and intelligent son is to share how lucky I am to be married to the most wonderful, loving man on the planet and how grateful I am that God sent him into my life. This man is my rock. Reaching for his hand while we watch a movie or lie in bed calms me completely. He is loving, caring, and patient. He has looked after me all the way during these hellish months. He has run to pick up medications. Eaten, bought, and prepared foods. Taken care of all the laundry and dishes. He has also become really proficient in redressing wounds three times a week. He has set such a high standard with the dressing. He does it best. Better than the nurse(and I love her to bits) at the wound care clinic. I also thank God for our beautiful son. I wish he did not live in Manhattan, but you are only young once, and when we were young, we spread our wings far and wide. I trekked from South Africa to a new life in the San Francisco Bay area, and the love of my life, with his freshly minted three degrees from MIT, also set out to make a life in the Bay Area. This is where we met online, and we hit it off immediately. We have been in love and have been inseparable ever since then. We married, and nine months later, we had our son.

He is our joy; even as a grown man, he is the center of our universe. He is so funny and a fantastic writer, and he loves creating music and sharing his songs on YouTube and Spotify. Exceptional talent for a guy who did not want to continue piano lessons at age 8. He lives and thrives in NYC, working for a long-running magazine news show. The show is older than he is.

I don’t know why the trials have shown up. I am not sure where they go, but I can do everything I can to slow down and/ or stall the damage and be hopeful instead of feeling despair.