Checking Back In -- Autumn Brings DVT Blood Clot Again [or still?], Weill-Cornell Stay and "Dr. Jeopardy"

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. 

Thanks Doc, for freaking me out! and a summer wasted by dangerous air.

First of all, my Medicaid home care is fine.  When I received a notice to come for my fair hearing, I got in touch with some disability activists to see if someone could come with me.  Someone from CIDNY made a phone call to learn that I was renewed in April.  So I didn’t need to go to my fair hearing.  Nice of them to tell me.  What they did tell me in early August is that I have to pay Concepts [technically my home care agency] $207 surplus income.  I pay all of my surplus to the pooled-income trust, and they use it to pay bills, and I wanted to fight this but I am so tired of making relay calls, that I just let it stand, even though that’s more than $200 that can buy me things I need.  Everyone is so busy that I hate to ask people to make these phone calls.  I had the idea to hire an assistant twice a month if I can handle the money.  It would mean four hours twice a month at $12-15 an hour off the books.  Suggestions welcome. It would have to be someone who could make phone calls, clean some things the aides don’t, file papers, and even accompany me to go out sometimes.

Check out this blog   smartasscripple.  But only check it out if you believe that people with disabilities are entitled to complain and be snarky about it.  He has no tolerance for ignorant people and a society that still -- 22 years after the passing of the Americans with Disabilities Act of 1990 -- falls very short of treating people with disabilities like the rest of society.  As for me, I am tired of trying to educate other people who still let people in our presence talk about me as if I were somewhere else.  Recently, my aide and I were in the T-Mobile store.  I still haven’t decided if I want to leave T-Mobile and go for an iPhone, or take an upgrade with T-Mobile and go for an Android phone.  So I was talking to the salesgirl with my iPad and yet she still talked to Indie [my aide].  So Indie said “Talk to HER”.  So she started screaming and I calmly said with my iPad “Please speak in a normal volume.  I am not deaf”.  You cannot govern common sense.  “It’s the right thing to do” doesn’t work. People are very short-sighted, and I don’t remember if I was any better when I was able-bodied. After all, I grew up in a time where we called people “deaf and dumb” and “crippled”.  And so children are best, as well as African-American and Latino people. The last two groups I attribute to more familiarity with illness or disabilities either because they tend to be more in the health care fields, or from poorer neighborhoods where there tend to be more people with disabilities being taken care of by their families.

I still continue to enjoy my largely vegan [except that I eat fish] diet and I feel good.  I like to taste various healthy snacks, and want to start blogging about it.  My favorite thing lately is a sprout powder by Sprout Living.  I mix the powder in with my banana/berry smoothie in the afternoon, and it has gotten things moving.....I now take 2 potassium pills every day because my potassium is still low.  Potassium is very constipating......my sprout powder fills the bill.  I found out it is really easy to sprout things like beans and seeds in my kitchen. I have an aide who works mostly at night and she says she knows how to do this so she will help.  Also, trying out new healthy foods and snacks has become a hobby of mine, so I am going to start another blog about that soon.

I didn’t update in a while because this summer has been very up and down for me, and also my primary care doctor made me crazy in June, saying she heard fluid on my left lung and I should get a chest x-ray, which I did. I figured that maybe I had a touch of pneumonia, although I felt okay, save for a little more sleepiness than usual. So I had the x-ray on a Wednesday and got a message on my voice mail the following Monday to call the next day regarding my chest x-ray [they called before closing-- thanks]  I hate this; if its okay, just say it on the voice mail.  I called the next day and the nurse told me the x-ray came out blurry and they needed me to have a CT scan of my chest.  That’s right ---- shoot me with more radiation so eventually I get cancer.

The next week, I had my appointment at the ALS clinic at Weill-Cornell and discussed this lung thing with the team.  They referred me to a great pulmonologist -- Dr. B.  In the meantime they all said I could decide whether to do the scan or wait to see Dr. B first.  I said oh what the hell, let me get the damn scan so Dr. B will have something to study. Again, I get a voice mail to call back regarding my CT scan.  I call and the nurse tells me there is a “node” on my lung and I now need a CT scan of my abdomen and I begin to freak out.  I ask why the doctor is ordering a CT scan of my abdomen and I get :
“I don’t know. She didn’t tell me”
“Well, what are you trying to rule out?”
“I have no idea”
I told her I want facts and to have the doctor call back.  I’m told that won’t be until tomorrow. Great, I’ll be out tomorrow from about 11 until about 4pm.  She said she would relay that to the doctor, and evidently that slipped by because I came back and there was a voice mail the doctor left at 2:15.  I vowed to not chase her down anymore but she called the next week.  Abdominal CT scan was a mistake; it was supposed to be thyroid sonogram  [close but no cigar-- different test and different body part]

The upshot is there is a “spot” of .8 centimeters, which Dr. B says if we were to go out and take scans of the general public, most people would have spots [on the report, they called it a “nodule”].  Dr. B works with the ALS doctors so he said the “fluid” on the left lung is a result of the weakness on my left side which causes me to lean to the left [the wheelchair company promised six months ago to put something to correct this among other things -- don’t ask!!]

Next chapter is that there is a four centimeter “nodule” on my thyroid and the doctor of course wants a sonogram. I don’t know if I want to do that.  There is no radiation, but there could be an injection of dye.  Can’t she just check my thyroid with a blood test?  Dr. B says this is probably “much ado about nothinng” too.

On June 7th, I finally saw High Line Park with Judy and Louise.   It’s really special but wear a hat on a sunny day because there is no shade.  Then we went to lunch at Chelsea Market, which I used to visit every Sunday with a certain man I wasted three years of my life with, but haven’t visited the place since late 1999.  Boy did it change!!  And the weekend before, my dad took me and my sister’s family to Ben’s Best for my annual birthday dinner

The best surprise came on the last Sunday in June when my cousin Rich Vogel came to town from Portland, Oregon with his two kids [18 and 21], Mitch and Madisen. As luck would have it,  they picked a weekend of over 100-degree weather, which people from the Pacific Northwest never see.  Madisen was sick from the heat and stayed back at the hotel when Rich and Mitch came to Queens and we met at Ben’s Best [again, yes], so they could have real New York Jewish deli food.  We reminisced about growing up together in Oceanside, where Rich learned how to make frog legs working at Nathan’s. And Rich reminded me about the many times I substitute-taught at Oceanside High School and had my sister, Rich’s sister Peggy and Rich and all their friends as students.

Last month, I went to Red Mango twice with Louise.  I have become an addict of Red Mango frozen yogurt.  Also, I went to the Queens Museum of Art with Judy to the “Caribbean: Crossroads of the World” exhibit. This super-hot summer with 100+ degree days was a bust for me.  I love that weather but when you can’t go to a beach and in my case, no further than the front of my building, it’s hard. Except for the two outings mentioned, I never got out in June, July or early August.  Also, work was being done on the exterior of my building and there was dirt and debris flying, as well as scaffolding around the building, so I was stuck inside because the air outside was too dangerous. What a waste!