The bright spot was the Walk to Defeat ALS in Eisenhower Park, Long Island on September 28. Danielle designed a fantastic tee shirt for the team:
She is a very talented graphic designer so if you want to hire her to do a design, let me know. Anyway, she designed the shirt with bunnies -- of course -- and pirates to honor my friends in the Cayman Islands. One of my best jobs was Area Sales Manager for Cayman Airways in the tri-State area, in the early 1990s, and a lot of my Facebook friends are from Cayman. Thanks also to my team members Diana, Janis Hirsch, Deb and Andrew Wolfe [who brought the wrap sandwiches from Farmer Joel in Oceanside, Long Island, and always awesome fundraisers] and Sofia and Elan Wolfe.
In late October, a turn of events put my life in a tailspin that I am only now recovering from. I began to notice my left leg -- especially the knee -- getting harder to manage when I tried to stand. I chalked it up to my injury at the beginning of 2013, and prayed that it didn't mean my disease was progressing. By the beginning of November, my left foot and leg were blowing up to twice the size of my right foot and leg. I was concerned but not alarmed, although I should have been.
By Sunday 11/9, my aide Gulshan made me cancel plans to go to a play that my friend Louise directed. Gulshan insisted I go to the ER at North Shore/Long Island Jewish Forest Hills Hospital , which is just around the corner from my apartment. I fought her tooth-and-nail on this. I had had some bad experiences in hospitals, most notably in Beth Israel overnight in 2005 when they wouldn't let me keep a cellphone or even a speaking device except for a writing board that the nurses kept moving and wouldn't give it to me because they didn't know what I was asking for -- despite a sign over my bed indicating "Patient needs writing board to communicate". Enter the morning shift of nurses -- one of whom kept laughing at me when he didn't understand me. And there had been visits to the local ER in Forest Hills that had been disastrous. So I avoided hospital stays at all costs, despite promises from my friend Michael [a big kahuna in North Shore/LIJ System's administration] that the hospital was getting better.
So, when the doctor looked at me in the ER, told me I had cellulitis and intravenous antibiotics were a good idea, and suggested admission until at least the next day, I went kicking and screaming. I was in the ER waiting for a bed from 3:00 pm on Sunday until 5:00 am Monday. Then I went up to a room, and ended up staying until Wednesday at 6:00 pm. Once admitted, my aides are not paid, but Gulshan stayed with me until 6 am Monday and then Cheryl came and stayed until about 2:30 pm and ran back to the apartment to get me some things, as well as meet Chelsea's Auntie Nancy to pick her up and take her to her house. By then, I learned that I would not get out that day - far from it. By then, I also learned that a blood clot was suspected and I would be the hospital's "guest" for "quite some time" as the nurse put it. I was terrified because I pictured MRSA and staph and antibiotic-resistant microbes creeping into my body and causing a worse scourge and possibly killing me. So Louise came to see me on Monday night and we discussed my Health Care Proxy documentation that was now in a forgotten place somewhere in my apartment and how important it was to find it. I had no idea when I would get out of there.
I must say that things have improved immensely in technology since 2005 and in hospital policy as to the electronics they allow. Not only was I allowed to keep my iPhone, but I had brought my charger and the nurses gladly kept charging it for me in an electric outlet right in back of my bed. I couldn't have asked for better care all around. The nurses and LPNs were great! On Tuesday when the doctor came in and told me that a test I took that morning had revealed a blood clot [aka Deep Vein Thrombosis or DVT] and that I would have to stay one more day, I questioned whether I should go home so soon. DVT is a serious thing -- if my blood clot had gone further -- to my lungs and/or heart, it would have been much more serious and led to a much longer hospital stay. At its worst, it could have been fatal. On Wednesday evening I was discharged with a 7-page discharge plan. I left with prescriptions for an additional week-long round of oral antibiotics, steroids to wean me off them within a week, and a regimen of a new generation of blood-thinner [Xeralto] that didn't require weekly blood-monitoring and no dietary restrictions. The latter is a big deal, because the old generation of blood thinners like Coumadin and Heparin required a weekly blood draw and also restrictions on some of the veggies I love most [high in vitamin K] like cabbage, spinach, broccoli, kale and brussels sprouts. So I was a happy camper as far as that was concerned. The blood thinner is to prevent further blood clots, but according to the doctor, the actual blood clot I already had, would clear itself.
So I came home on Wednesday, Chelsea's Auntie Mary Ann brought her back on Saturday, and I will follow up with my primary care doctor next Tuesday. I have to say I felt a little crappy for about a week after I came home, from the antibiotics and the steroid-weaning, but when that was over, I actually felt better than I had in several weeks. I guess I didn't realize how sick I really was. The weakness and fatigue [and bluer-than-usual disposition] in the weeks preceding my hospital admission, I had chalked up as a norm with my disease, and sadness at summer leaving and winter coming on. And I won't be so afraid of checking out an emergency at my local North Shore/LIJ Forest Hills Hospital in future. I won't say that I will check in there as a spa hotel, but if I have to stay, I won't be so terrified.
