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!

New Developments/Eating Healthy

Firstly, Some good friends from my ALS group lost their relatives to ALS recently.  S. and D.  lost their brother who lived in New England.  Their brother was a creative person at a multi-national toy company, and had a six-year-old son, and three-year-old twin boys, who were born just after he was diagnosed.  This family was so devoted to this young father that, even though the siblings live in New York City and their parents in Duchess County, at least one member of the family went to New England every weekend to see him and his family.

Then maybe two weeks after I heard about this passing, I received the sad news that another friend from my Beth Israel ALS group lost her mom to this disease.  M. was so dedicated to her mom that she went from Manhattan to Brooklyn at least one day every weekend. These two families were held together by their Catholic faith and familial cohesion. It's true that ALS is a family disease, because it affects the whole family.

I am still eating a healthy diet.  For breakfast, I have stopped the Carnation Instant Breakfast [now I think they call it "Breakfast Essentials"], because it is chock full of sugar, despite providing many vitamins and minerals. I now eat a whole-grain type of cold cereal with soy milk.  By the way, people who are vegetarians, or anyone who does not eat meat every day, need another source of vitamin B12.  I found out that soy milk is fortified with B12, whereas almond milk is not.  I stay away from dairy because of lactose intolerance, and what I have learned about the dairy industry and its cruelty to cows, which I won't go into here.  I don't want to shove animal rights down anybody's throat.  You can also get B12 from yogurt, cheese, and other fermented products, like sauerkraut or kim-chi. I don't drink milk, so fortified soy milk is essential for me.  And certain cereals and breads are fortified with B12, as are several products made as meat substitutes for vegetarians.  And, if you are a carnivore, you are getting enough B12.

Which brings me to the next challenge -- Vitamin D3.  Especially for post-menopausal women, but for all human beings, we need Vitamin D3 for strong bones and other organs.  Lately, most of us are not getting vitamin D from the most reliable source, which is the sun.  If you don't live in Sydney, Australia, which has 340 days a year of sunshine, you are probably deficient in vitamin D, unless you  
get 20-30 minutes of sun every day and don't use sunscreen.  Yes, the reason we are not getting enough D from the sun is that we have been so scared of skin cancer -- as we should be -- and use so much sunscreen or sunblock, that we don't get the sun on our skin.  So we need to take it in supplements or get it in fortified foods.  The importance of Vitamin D is that it works with calcium to keep our bones strong.  It's not enough to get the calcium alone.  And for women, it is so important to prevent osteoporosis.  For me this is so important, because even in the summer,  I don't get out as much as I used to, for various reasons.

I have read about the supplement Spirulina [blue-green algae] showing promise for ALS mice, so I bought a bottle, but lately I have been also reading that these same scientists who did this research on the mice, don't know if Spirulina can be harmful to humans. So, I'm taking it very cautiously.

Since most ALS patients die from complications like infections and pneumonia, I look for anything which can slow down progression.  In the 70 years since Lou Gehrig died, there is only one drug [Rilutek/Riluzole] which is supposed to slow progression and only add about three months to our lives.  Whenever I hear of an ALS patient surviving a hospital stay, due to pneumonia or other infection, he/she always comes home with worsened ALS -- that is, IF he comes home.  I look at it this way -- good health and especially a strong immune system, won't cure ALS, but it will help me keep infection away, or help me fight anything I get.  It's the only defense we have.

Writing a book is harder than I thought, especially in my situation: a studio apartment with an aide, and the television going most of the time.  Luckily, my daytime aide goes shopping for groceries in the morning, and I have some quiet time.  And often in the afternoon, she goes in the kitchen and reads for about an hour, so I sneak in a little writing time then. But it's so hard for me to put together the chapters.  I never really took a course in writing a book, so I have no knowledge of book-assembling technique.  I'm doing the best I can, because I don't have money to take online classes right now.

Will eating healthy and vegetarian cure my ALS?  Of course not.  But I need to drop weight and get my blood pressure down.  Losing weight is so difficult when I can't really burn calories.  I keep hearing at my support groups that ALS patients need to take in more calories, because we burn calories faster.  Whoever came up with that has never met me! Why isn't that true for me?  In the first couple of years of this disease, dieticians and doctors told me "Eat whatever you want, and eat a lot", so I did!  And now I'm overweight and suffering from high blood pressure for the first time in my life.  Oh well, I keep trying.