Monday, November 26, 2012

Fake Blog Commenters Who Are Really Spammers Make My Disabled Life Worse

As if I don’t have enough annoying people to deal with.

Not only do I have to contend, like everybody else, with unwanted telephone solicitors, junk mail delivered by the mailman, spam delivered in my online inbox, hackers who infiltrate my email address, unknown folks who want to friend me on Facebook, Twitter followers who are creeps, but now I must read the crap written by lying anonymous commenters on my blog.

I know the other annoyances don’t seem fair to everyone else. But this one in particular rankles me. I became a blogger because I’m a writer at heart and because I had been through a horrific near-death fight with cancer -- with the emphasis on “been through." I came out the other side of this nightmarish experience full of opinions on a number of things: life, sickness, disability, the medical profession, to name a few. To use a trite totally overused phrase, I came from a good place when I decided to enter the blogosphere.

And while it is still physically difficult for me to post a blog more than once a month (just sitting and typing is extremely taxing on my battered body), I do it for two reasons: I enjoy writing and I truly believe my observations can help people navigate through illness and disability and aging or at least offer a new perspective on such things.

I don’t enjoy sitting (in pain) and reading such tripe as:

Thanks in support of sharing such a fastidious opinion, article is fastidious, thats why i have read it entirely

I can’t just ignore these comments. Because I moderate them. Which means any Tom, Dick, or Harry can’t post on my blogsite without me reading through their comments and approving them.

While you have the option of using your name or posting as Anonymous, anything you write goes into my email account so I can review what you’ve said and decide to publish it on my website or not. Some of my friends do post as Anonymous, usually because they can’t figure out how to post using their real names. (Hey, when you write a blog about aging and disability, not every reader is technologically adept.)

This system is designed to keep out the blog spam from appearing on my website.

And it does.

But it also means I must open up each email that says “Anonymous” has commented on my blog. And I must read through their words, then tag the comment as spam, alerting Google, my blog adminstrator, not to publish it.  Then I must delete it to get it out of my email box. Did I mention that it hurts me to sit up at the computer? I get several of these fake comments a day. But I only average one or two blog posts a month. I’m spending more time on these intrusions into my world than I am actually writing what I want to write. 

When I first started receiving such comments a few months ago, I found them mildly amusing.

Kind of like when you get a particularly outrageous spam asking you to buy the latest penis enhancement device or contact a Nigerian dude to cash in millions of dollars.

Some comments just cracked me up by their poor grammar and spelling. I imagined chimpanzees writing in a room full of computers when I read this one.

I loved as much as you will receive carried out right here.
The sketch is attractive, your authored subject matter stylish.
nonetheless, you command get got an shakiness over 
that you wish be delivering the following. unwell unquestionably come more formerly again since exactly the same nearly very 
often inside case you shield this increase.

And there was this gem:

What i do not realize is in fact how you are no longer really much more well-liked 
than you might be now. You're so intelligent. You understand therefore significantly on the subject of this matter, made me personally believe it from a lot of varied angles. Its like women and men are not involved unless it's 
something to do with Girl gaga! Your individual stuffs outstanding.
Always maintain it up!

Some have farfetched or unintelligible compliments like “Fantastic goods from you, man” and “I am gonna watch out for brussels.” Some sound believable like  “Wonderful post. Keep up the great writing.”

But it’s easy to tell the real compliments from the fake ones by the telltale final line of each comment, directing me to visit a blog or website. These can be on any number of subjects, like nail fungus photos, loans, the stock market, love spells that work immediately, breast enlargement Bangkok, shoes for nurses and some  foreign words I can’t translate. 
And although I’ve written more than 45  blog posts since I went online last year, all these comments are about two of my pieces: the one I wrote about how it was impossible to get accessible tickets to see Bruce Springsteen  and one in which I gave my Handi Awards  to places with accommodations that  actually made my disabled life a little easier.

I'm not sure how the spammers latched on to these two, but they have bombarded me with fake comments. While they are all flattering, some offer constructive  criticism: one said my headline was “a little vanilla”, another suggested I put photos or videos on my site (I do have photos) and another suggested I add a “donate” button to my site.

Many claim they learned about my blog from a family member or friend, which I think is supposed to make their comments more believable. One sounded like the type of vague sentences you find in fortune cookies:

Truly when someone doesn't be aware of after that its up to other visitors that they will assist, so here it happens.

Thanks for sharing.

I got another that reminded me of chimpanzees in a room on amphetamines:

pears to be optimistic that the dour developments of a affiliate, as they 
can dilate their commerce. establishment A jural 
entity that in the beginning sells the amass. These bonds 
undergo in our structure and enjoyed the account so that if a dealings is in direction for the 35 
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well intercommunicate ASIC for complaints 
close to companies quoted by this like try once more","hideDetailsDefault":"wrap accessibility and transportation details","priceLabel":["Price:","cost For 
Both:","Price For All property extremity All Things D Microsoft Bids for Oshkosh, Puts evaluate 
at $3 trillion ratifier easygoing construe watch Oct 29, 2012 
Gordon Gekko Was Wrong: Sometimes the Pig 
Gets Eaten Gregorian calendar month 26, 2012, 9:15 
A.M. east-central UPDATED 3:42p Can The confirming land talk give care To go 
freight car Th bet for a colourless to oppose acceptant Th.
orbicular markets , OTCBB , playing period The furniture 
bare table (OTCBB) go Sheets By: Cydney Posner reported to Magor,
insurers' efforts to train your cent handle alerts , fractional monetary unit framework out at that place and publication the tailing trends: Uptrend, Downtrend action passageway, and resource Projects duplicate place somebody symptomatic form Events Pin carte Pinned carte du jour is a in public listed instrument of punishment across all of our stocks. Top 10 Dow number frame Upgrades/Downgrades The lucre increase frame N. Y. Stock Exchange data system All Period: nowadays Prev. 5 Days Prev. period Prev. individual period of time to Buy Now prospect All Posts By This somebody weekday was the annunciation of regular payment plans, including mixer guarantee, pensions and IRAs. 3. speech act notes. These are the

That’s not a typo. It ends there and it asked me to check out a link about “today stock market.”

No, thank you. I’ve got more emails to read. Someone who wants to remain anonymous has posted a comment on my blog.

Saturday, October 27, 2012

Hospital Roommate Etiquette: Rule Number Six

Here’s the latest in my list of etiquette rules all hospital roommates should abide by. The  first five were:
 No whining or screaming;
 Be considerate;

The sixth involves reacting to a situation. You are in close proximity to your roommate. You may not have seen her (in my case, I was confined to my bed for months and couldn’t walk around the room. And unless the curtain between us was pulled, I never laid eyes on several of my roomies.) But you’ve heard her, you’ve heard her visitors, her doctors and nurses and you know more than you want to know about her. You’ve overheard her most intimate, embarrassing moments and she, yours. 

And so the next rule of etiquette relates to your involvement in your roommate’s life.

Rule No. 6. Only butt in when necessary.

There are plenty of opportunities, believe me. But unless it involves a serious health or comfort situation, you should keep your comments to yourself.

Once, I listened while a woman had many visits during the night from the nurse. Why she couldn’t sleep, I don’t know. But because I was a few feet away from her, I couldn’t either. She was in her 90s, she kept coming back to the hospital, she couldn’t eat solid foods anymore and I had heard her doctor tell her family that there was really nothing else he could do for her.

She was dying and her days were numbered.

Her caregiver showed up one day and was concerned that she was so sleepy. She yelled at the patient (she was hard of hearing) to ask if she had a good night sleep. And she kept expressing puzzlement at why the woman kept nodding off.

I knew the woman had had a rough night, but in the scheme of things, it really didn’t matter. So I kept my mouth shut.

But on another day, when that same lady was hooked up to a machine for a breathing treatment, a visiting minister came in and offered her Communion, a bread host that was exactly the type of thing she couldn’t swallow. The respiratory therapist had stepped out of the room momentarily and the minister asked her daughter if the woman would like to receive Communion.

Now I knew the daughter hadn’t been there much and wasn’t up on her mom’s condition. (The caregiver knew more than she did. That’s another story.)

“Sure!” she told the minister. “We’ll just stop the treatment.”

I imagined the poor old woman choking to death on the host and quickly considered injecting myself into the scene. Just then the therapist came back into the room,  became instantly alarmed and put an immediate stop to the dangerous plan.

Another day in the rehabilitation ward of another hospital, I did have reason to intervene in a roommate’s case. Twice. The patient was a lady who only spoke Korean. I mean she did not speak or understand a word of English. The nurses would try to explain things to her as best they could. The patient’s husband would show up and stay with her for about 10 hours of the day, and he would translate as needed.

But that left many hours in which she was at a loss for what was happening and the nurses were at a loss on how to get through to her.

She was a screamer. She was afraid of anyone in scrubs and anything they wanted to do to her, and she would let them know. Loudly.

She also used two words over and over. When her husband was there,I learned they meant “pain” and “cold.”

I can’t remember what the word for cold sounded like, but the word for pain sounded to me like “ahpo.”

The poor thing was apparently always cold and in a lot of pain.

I listened as a nurse came in to see what she was hollering about. “AHPO! AHPO!” she said sternly. 

“OK,” said the nurse. She left the room. Awhile later, she came back with a banana.

“We didn’t have any apples,” she told the woman. “Hope this is all right.”

Shortly thereafter a new nurse came on duty. The husband still had not arrived. I called her over to my side of the room. It was a spacious room and our beds were facing each other, behind curtains.

I told the nurse if she happened to hear a word that sounded like “ahpo”, it meant pain.

Another night, I also butted into my roommate’s business. She was recovering from brain surgery. The staff was concerned about her getting up and falling down while she was by herself. So they pushed her bed against one wall so she could only exit from one side. And they stationed an attendant outside in the hallway for a couple of nights, just watching her to make sure she didn’t try to get up.

They would always explain how she could summon help by pushing the button. If she needed to get up to use the bedside commode, they told her, PLEASE push the button. I don’t think she understood at all. She never pushed the button in several days I was with her.

In the middle of one night, after the guard no longer stayed outside our door, I heard some telltale sounds. She didn’t mutter a thing. But I heard the trademark “rrrrrip” of tape from her adult diaper. I heard her rustling around and I heard her sit on the bedside commode.

I pushed the button and called the nurse. “My roommate is not supposed to get up and she’s up!” I announced when the nurse wanted to know, via speaker, what I needed.  One good thing about having a roommate who doesn’t speak English, she didn’t know I was ratting her out.

The nurse raced in and chastised the patient, helped her back to bed and told her not to EVER get up alone and to PLEASE push the button if she needed something.

Again, she didn’t understand.

One time I was on the receiving end of someone butting in to my business.
When I was alone on my side of the crowded room in the nursing home from hell,
 my call button fell to the floor.

I uttered a mild expletive.

Immediately, my ancient, nonverbal roommate pulled back the curtain between us. She looked at me quizzically and made a sound. Yeah, I said, I dropped my call button. And because I was disabled and bedridden, there was no way I could retrieve it.

And, bless her heart, she understood. She pushed her button and the nurse came in our room and solved the problem.

When you are seriously ill and hospitalized, it’s all you can do to worry about your own health. You don’t want to be nosy or intrusive. But sometimes it’s OK to butt in. Kind, even.

Tuesday, August 28, 2012

Bless You, Robin Roberts for Encouraging Bone Marrow Donor Registration

Robin Roberts is saving lives.

The ABC Good Morning America anchor is shining a light on bone marrow transplants in an unprecedented way and taking the mystery out of the procedure. Even I, a transplant survivor, am learning things I never knew about signing up to become a donor: mostly that it’s easy and painless.

And so important. 
Robin Roberts  (Donna Svennevik/ABC)

Robin’s actions have already resulted in an onslaught of people volunteering to be donors. 

That can only mean lives will be saved. Many, many lives.

I cannot think of a fitting commendation for what she is doing. She is to be celebrated and honored. She deserves not only our best wishes as she undergoes her own stem cell transplant, but mega-hugs and never-ending gratitude.

When I had my transplant nearly four years ago, I donated my own stem cells,  an autologous transplant. It meant I didn’t have to find a donor for the life-saving procedure. The transplant was not an easy experience, not by a long shot. I’ve likened it to a month of hell for a chance at life.  As I approach the anniversary, I know it was completely worth it. I am ever grateful that medical science knew how  to treat my rare type of lymphoma.

But not everyone eligible for a transplant can donate their own cells. Their types of cancer  require them to get new stem cells from another person, what’s called an allogenic transplant. My heart aches for those vulnerable patients: Not only are they facing a life-threatening disease and a scary transplant, but they must wait for a suitable donor for the only procedure that can possibly save their lives. It’s a helpless situation at a time when they are at their lowest.

I remember reading about a local drive to find a donor for a toddler who was battling cancer. A few weeks later, I read the obituary for boy. Although 150 people had registered during the drive, none was a match. And time ran out before one coud be found.

So it is critical that word gets out about the importance of registering to be a stem cell donor.

As Robin Roberts has told all of us, enrolling in the donor program is easy. The very term bone marrow transplant conjures up a painful procedure. But it’s not. Nor is the donating process. (It's weeks in the hospital that are the hardest for a patient.)

Nowadays, a transplant itself takes minutes and is like a blood transfusion, when the blood contains baby stem cells that engraft inside of your bones and begin the slow process of making the blood healthy again. Signing up to be in the registry involves a cheek swab and donating is like giving blood. 

The U.S. Department of Health and Human Services says each year, more than 18,000 Americans could benefit from a bone marrow transplant, sometimes called a stem cell transplant. In slightly more than half the transplants, one study says,  the patient can donate his or her own cells. (It all depends, I’m told, on the type of cancer and how it responds to treatment.) But thousands (another report says 70 percent) must await a donor.

 A twin or a sibling can be a match, but it’s not guaranteed. I know two people with the same type of leukemia who have spent months this summer awaiting donor matches. One is on the west coast, the other lives in the east. One is older than me and the other in his 20s. In both cases, the patient has a brother. In both cases the brother was not a match.

Some 40 percent of allogenic transplant patients are related to the donor and nearly 60 percent get a blood donation from a complete stranger.

Robin Roberts was fortunate: Her sister was a perfect match for her transplant to combat myelodyspastic syndrome,  a pre-leukemia disorder that was a side effect of her previous chemotherapy.

As she did when she fought breast cancer after a 2007 diagnosis, Roberts shared her new health challenges with her television audience.

I watched years ago as she fought back tears to disclose her breast cancer diagnosis. I loved the stylish wig that made her look like herself when she returned to the air. But I also cheered her courage as she shaved her head on TV and went public without the wig. I was heartened by her spirit and faith and success in fighting her cancer.

And now, as she talks about her new battle and the bone marrow donor program, I love that she is doing more than helping explain things.

She is educating the masses about bone marrow transplants, dispelling myths and demonstrating the importance of registering to be a donor.

In two weeks after the June 11 announcement about her new disease, 
15,000 people had joined the bone marrow registry, 11,200 more than would have normally signed up during that period.

And last week on GMA she featured a touching segment in which a female bone marrow transplant survivor met and thanked the stranger who had donated his stem cells for the procedure. That day, the national donor registry Be The Match reported registrants had more than quadrupled the daily average, from 300 to 1,233.

Here are the highlights of what you need to know to become a donor:

-- It’s easy to join.  Be The Match will mail you a kit so you can swab your cheeks. No blood-letting or bone-drilling involved. The kit will include detailed step-by-step instructions and a postage-paid envelope to return your samples. You can either check their website or call them at 1-800-MARROW2

-- Donors must be between the ages of 18 and 60. All ethnicities and people of blended heritage are needed. You must be in good health and have an acceptable health history.

-- If your tissue samples (not your blood type) match a patient and you are selected to donate, the procedure is relatively simple.

In the past, donations were uncomfortable, involving a needle in your pelvic bone. But now, most donations are via a miraculous event called peripheral blood stem cells donation. The donor lays on a hospital bed while blood pumps out of her body, goes into a machine that collects the baby stem cells and returns the rest to the donor. If you have to travel to donate, your costs are covered by the national registry.

-- You can donate over and over. Because your body replenishes the blood and cells you contribute, you can donate as many times as you want. But make sure you keep the registry updated if you change addresses or phone numbers.

Robin’s procedure is scheduled for Sept. 5. In the transplant world, that will be known as her new birthday, the first day of her new life. I will be celebrating my 4th transplant birthday five days later. I won’t have a candle on my California Pizza Kitchen key lime pie but I’ll still make a wish:

That the bone marrow registry continues to be flooded with donors, so that those who desperately need a chance at life will be able to get it.


Friday, August 3, 2012

Yippee! Some Places That Make My Disabled Life Easier (And a Few Gripes)

I’m not always a cranky handicapped person. Some things I encounter in my new disabled life actually make me thankful that a service or accommodation works delightfully well.
I do take note of those when I come across them.
But I also take note of things that drive me nuts, things that make my challenging life even more difficult.
Here are a few of each on my latest list:

The Cayucos Beach Inn: a small, privately-owned hotel in a tiny California coastal community that has the best accessible bathroom I’ve been in.
I’ve been in plenty of accessible hotel rooms and I can say this: You never know what you are going to get. One time I opened the door to find a bathtub right in the bedroom -- not one of those walk-in bathtubs you see on TV ads -- but a regular climb-in tub. I could not get in one of those unless I had a team of firefighters hoisting me in and out. That room also had a roll-in shower in the restroom that suited me just fine. (I was in a wheelchair at the time.)
Other times I find showers that have safety bars, but the shelves for the soap and shampoo are out of reach. Or nonexistent. 
But the Cayucos Beach Inn asked what type of accommodation I needed before I checked in. I said I pretty much just needed railings near the toilet and in the shower. (I can’t stand or walk alone without a mobility device.)
What they gave me was a spacious bathroom with a shower that had to have been designed by someone who was actually disabled. Not only did I find well-placed rails, but the handheld shower wand was at my level. The padded (yay!) shower bench pulled down easily from the wall.

There was a tray at shoulder level (when I was sitting) to hold my soap and little bottles. And the towel was reachable while I was still seated.
I know, it might not sound like much to the abled world, but the combination of all those things was nirvana for me.
The Stander Co., which makes one of my favorite walkers, is not only innovative but dependable and true to their word. I found their Metro Travel Walker online when I was looking for an alternative to the boring walkers that I seemed to see everywhere. 
In a previous blog I discussed the pros and cons on all the walkers I’ve used. My black walnut Metro walker gets compliments everywhere. I tell inquirers to write down the name and look it up on their computers. The walker is lightweight and fashionable. It’s the only one I can easily lift into the car by myself and I take it most places with me. It doesn’t meet all my needs, but it’s close to it.
So I was upset when one of the crossbars broke. I had bought mine from an internet
retailer, so I looked the Stander company up online and called it. I asked if the walker had a warranty, but said I didn’t have evidence of when I purchased it. They told me not to worry, the walker had a lifetime guarantee.
They sent me a new one free of charge immediately. 
When I recently had another minor problem, I called again.They repeated that the Metro is guaranteed for life and they shipped my replacement parts post haste.
This was not what I would consider a high ticket item, (a search online shows an average price of $100). I’ve used other walkers or mobility aids that were more expensive, some were given to me and and one I got for $12 at Goodwill. But if I had a problem with any of them, usually a bent bar or a stuck joint, I just tossed it in the trash and grumbled.
Dream Dinners is a make-it-yourself meal place I was introduced to before I got sick.
I used to go with a friend, where we would spend a couple of hours assembling meals that we could put in our freezer to last the whole month. It was fun, affordable and the meals were always healthy and tasty.
Now that I’m disabled, I can’t make the meals myself. Fortunately Dream Dinners began a Made-For-You program which was fabulously timed with my recovery from grave illness.
Now I order my meals a month at a time online, then I drive to the Dream Dinners nearest me at Granada Hills, Calif. (with my Stander walker in tow).  And when I show up myself to retrieve the meals, a friendly employee happily carries two big bags of meals to my car. 
And for the next month, I can prepare dinners for my family without having to reach for ingredients and stand at the kitchen counter chopping stuff endlessly, tasks that don’t come easy these days. 
Now, a few things I don’t like:
Restrooms with wastebaskets that require stepping on something to open them. People dependent on walkers or wheelchairs can’t do this. I have to grab the top of the can to lift it up and toss in my trash. Eeeuww.
Handicapped parking signs that are directly in front of the space, without a curb as a buffer. I’ve “bumped” many a fence or post with my car as I pulled right up to the sign.
Raised bumps near the handicapped entrance to a sidewalk. 
Usually yellow, they are officially called truncated domes and they are required by the Americans with Disabilities Act to let blind people know when a sloped sidewalk meets a street. But they can cause problems for people with walkers, canes or wheelchairs. I’ve read reports of people who have fallen from wheelchairs and been injured. And people with spinal cord injuries can go into painful spasms trying to cross those bumps in their chairs.
I agree with the person who wrote a blog post for California’s Assistive Technology Network  suggesting a compromise -- maybe some smooth spots can be interspersed near the truncated domes for those who are physically disabled.
One of the most popular strip malls in my community has a front row of numerous disabled parking spots (yay), but then a field of truncated domes and cobblestones to get to any of the establishments (boo). Nowhere is there a smooth path as an alternative.
Among the businesses in the mall are a massage place and a yoga studio. For disabled people to get to either of those therapeutic places to relax, they first have to cross a wide sidewalk that is guaranteed to rattle their brains and stress them out. And then exit the same way. 
Bottom line about things that make on my thumbs up or down list: for us handicapped folks, they might make us return customers. Or not. One of the stores in my local shake-your-brains-out strip mall was a specialty grocery store that shut its doors not long after opening. Had it provided a smooth entrance that I could navigate easily with my Stander-walker-thrown-in-the-shopping-cart routine, I think its days wouldn't have been so numbered. I would have spent gobs of money there. And I'm not alone.