I checked out for a while -- I needed to. I was mourning the loss of a Dad as I knew him, dealt with another DVT [deep vein thrombosis] and also absorbing some deep criticism of me and the blog, the importance [or not] of honesty, and the sudden appearance of new angels and great "random acts of kindness" which took me out of a rock-bottom feeling that I was beyond unloved [hated in some cases] and I had to look at myself and my motivations and not just wave off some hurtful truths with an arrogant "it's her/his shit, not mine".
Someone who plays a very big part in my life said this blog was nothing but an angry rant at everybody who had ever done me wrong. Maybe it is, at times, but only to try to inform others about life as a person who was living very actively and now finds herself with limited independence. Dealing with this disability for almost 12 years, I fall into a sort of complacency at the way things have turned out. We, as people with disabilities, are the last marginalized group to suffer discrimination, and have to fight for justice and equality. If anyone thinks I have no right to get angry when I encounter humiliations and bad treatment, let them live one day in my wheelchair and try to get to an appointment and depend on Access-a-Ride; see how people treat them out in the world, and how much they cannot do and places they cannot go; even after 25 years of the Americans with Disabilities Act, there is still so much to be done.
In late September I went for a followup with my local cardiologist and this was a very timely appointment. My left leg, where I had the blood clot in November, 2014, was still swollen. He had told me in June when I went for my six-month appointment that the clot was gone and I could go off the blood thinner [Xeralto]. This was a big relief because using blood-thinners causes me to bruise more easily, and a simple knock or bang could cause a serious bruise and even internal bleeding. So I was relieved.
So by the time my late-September followup appointment came around, I was concerned because my left leg was swollen again and red and shiny; these are all symptoms of a clot. So I asked the cardiologist to check it out. He seemed reluctant but -- with five minutes to go before my scheduled Access-a-Ride pickup, he got the technician to do a sonogram in the hallway. Yes -- you guessed it -- his exam rooms are tiny and I am out in the hallway. As a matter of fact, my EKG had to be done earlier with my shirt up to my neck and my bare back in the hallway -- bra strap and all. Anyway, the sonogram seemed to indicate that the clot was gone. My vehicle was outside so I ran out and quickly asked the doctor why he thought my leg was so swollen, and he shrugged his shoulders. About 10 days later, one of my aides begged me to go to the local [N. Shore/LIJ] ER and I told her I had an appointment with my Primary Doc at Cornell in 4 days and I would have her look at the leg. By now the leg was redder, shinier and even more swollen. I asked my Primary doc Dr. M to look at it, and I mentioned that the cardiologist had said there was no clot. When she lifted up my pants leg, she was concerned and said "It's probably just a 'post-thrombotic syndrome' but just to ease our minds, let's send you for another sonogram."
When my aide and I glanced at the screen while the tech was passing the wand over my leg, and saw a huge white area, we both looked at each other like "this can't be good". When the tech was gone for what seemed like an eternity and came back into the exam room with the radiologist, I knew something was up, but I said "Access-a-Ride is coming in five minutes, so we have to make this fast." Ha ha ha!! He told me I would not need transportation because I wasn't going home so fast-- at least not today. We were escorted to the Weill-Cornell [NY Presbyterian Hospital] ER where I got a little private room in the corner and watched TV until I got into a semi-private room upstairs at about midnight. I really thought the nursing care was very good at North Shore/LIJ [Long Island Jewish] in Forest Hills] last year but compared to the care at Cornell, NSLIJ was Motel 6 and Cornell was the Hilton. Since my roommate was prepping for a colonoscopy and running between bed and bathroom all night, [and past my bed] I sat up and watched TV literally all night until a respiratory therapist brought me a bi-pap vent at 4am, without which I can never sleep, especially with the lights on.
They had originally promised I could go home early the next morning, but of course that was a big joke. The night before in my private room in the ER, a young resident came in to check on me, and I said "please don't disturb me during Jeopardy" so he kept coming in periodically and throwing trivia questions at me all night. The next morning "Dr. Jeopardy" was on duty upstairs on 5North and kept coming by and throwing trivia at me, and I threw questions at him. I stumped him with "name 8 countries with 4 letters"[can YOU?]..and we had a lot of fun. Anyway, Cornell's idea of "early in the morning" was 6:00 that evening. I have to say the food was restaurant quality and I'm not kidding. I ate till I was busting and still had food left over. I had pancakes and turkey sausage for breakfast [that was only part of it] and my favorite -- salmon-- for lunch and even the broccoli and potatoes were perfectly seasoned! I thought the food at NSLIJ was good but this was delicious. And in case you question my culinary judgement, anyone who knows me, knows I am a foodie, so I know good food.
Cornell did something NSLIJ didn't -- they gave me an injection to disperse the clot. The bad news -- I am going to be on Xeralto permanently. Now, Xeralto [along with Eliquis and a few others] is part of a new generation of blood-thinners. The old generation [Coumadin, Heperin etc] require weekly blood testing and dietary restrictions cutting out vitamin-K foods, such as spinach, kale and Brussels sprouts [all dark leafy and healthy greens that I love]. The new generation of blood-thinners does not require frequent blood testing nor dietary restrictions. Another reason I am happy to be living in these modern times.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Sunday, January 10, 2016
Checking Back In -- Autumn Brings DVT Blood Clot Again [or still?], Weill-Cornell Stay and "Dr. Jeopardy"
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