Online Health Sites like CarePages and CaringBridge Provide a Huge Comfort for Patients and Caregivers

When I checked into the hospital in September 2008 for a bone marrow transplant, I was feeling OK. But I was anxious, knowing I was embarking on a month-long process that promised to bring me to the brink of death in an effort to save my life.

Perhaps it was nervous energy that prompted me to look through the binder on my nightstand. While I had been treated at UCLA for years for my lymphoma, it was my first time at the new Ronald Reagan Medical Center, so I also wanted to familiarize myself with the surroundings.

I came across a mention of CarePages, an online method to keep others aware of what was happening me. I showed it to my husband and he immediately signed up.

It turned out to be a godsend. I would highly recommend such a free online update site for anyone facing a serious health issue. 

The CarePages website says “Our mission is simple: to ensure that no one goes through a health challenge alone.”

Mission accomplished.

My husband and I felt supported during long weeks in that isolated hospital room. Because my immune system was reduced to nothing as part of the bone marrow transplant process, I couldn’t entertain many visitors (nor did I want to) and I couldn’t accept any food or flowers from the outside world. And I wasn’t accepting any phone calls.

But, over the next 30 days and beyond, when I was on my second visit to hell and making my way back for the second time, my husband and I received more than 300 encouraging messages on my CarePage from loved ones. During days when I could barely stay awake and couldn’t speak due to excruciating mouth sores extending down my throat, my husband would read me daily messages sent to his computer.

They warmed my heart.

Here’s how CarePages worked for us. A contact person, in my case my husband, signed in to create a page for me. Then he sent out a mass email to contacts informing them of the site and inviting them to sign up for updates.

Then, from my room, he would compose a message once or twice a day on his laptop. Followers would be notified when there was something new and they could check the site for updates.

The view from the UCLA hospital room

He also took photos of my room and the facility. So many people had visited and helped during my previous three-year battle with cancer as I moved from hospital to hospital and rehab facility. But this was a new place and he wanted to give them an idea of where I was. He emailed shots of the view inside my room, the view out the window and me walking around the unit. (Now you can post pictures on the CarePage itself.)

Laura Laughlin being transported for radiation

People told us they loved the view of things from our perspective. Even though they couldn’t visit, it helped them understand what was happening from my viewpoint.

And friends and family said they really appreciated being kept up on how my transplant was going. A few told us their officemates were drawn into the daily updates even though they did not know me. They were riveted to the too-real reality tale and they were rooting for me as I hit rock bottom, got the lifesaving stem cells infused and began my slow journey back to health.

CarePages and a similar site, CaringBridge began in 1997. CaringBridge was started by a woman asked by her friend to update others on the birth of a premature baby. Instead of making multiple phone calls, she started the first CaringBridge page.

Both the online health blogs offer more than updates. CarePages has links to health information, support tools and gifts. CaringBridge also offers a support planner for friends to coordinate care and tasks for the patient, such as providing meals, offering rides, taking care of pets. Tens of millions of people have visited the sites.

Here are key benefits of a website like CarePages or CaringBridge:

It’s not intrusive. I could stay connected with supporters without the phone ringing at an inopportune time.  My husband could attend to me and not be taking calls while he was in the hospital.  And friends and family could check the site day or night to see how I was doing.

It gives a caregiver something to do. I believe that through my horrible fight for my life, I had it easier than my husband and visitors. Blessedly, drugs kept me from being aware of my worst days, when I was shackled to the bed, spoke in tongues and couldn’t breathe or eat on my own. I still have no memory of them. But my dear family and friends had to watch helplessly while doctors scrambled to help me.

Laura Laughlin, with mask, taking a walk around the unit.

For the stem cell transplant, days in the hospital were excruciatingly slow as they zapped me with huge doses of chemotherapy, radiated my whole body twice a day for four days, treated an allergic reaction that made my face swell like Jabba the Hut and my skin burn with itchy welts, tried to get some liquid nutrition into my sore-covered mouth and sought the cause of my fevers and chills.

I was drugged through all of this so I did, mercifully, get some sleep. My husband was with me daily, waiting by my bed, watching my slow progress. But he had something cathartic to do besides assisting me and waiting. He  composed  updates on the computer and read messages of support out loud.

It puts things in perspective. When I came out of the experience alive and cancer-free, I could read the daily chronicle of my journey. It’s painful to read. But it’s important. It gives me a real sense of how far I’ve come and how much I am loved. 

Grrrrrr: Places that Hamper Accessibility or Don't Accommodate for the Disabled

Some establishments are very accommodating to the disabled.  I’ve mentioned a few in my previous blogs. But despite the rules imposed by the Americans with Disabilities Act , many places either do not accommodate those with mobility limitations or do it poorly.

Grrrrrr.

I ran across a few in the past few months. 

The first came when my husband wanted to take me to a concert. My Morning Jacket was playing at the Wiltern, a small theater that is described as an Art Deco architectural landmark in Los Angeles. He went to the ticketing website for Live Nation and checked the box for "wheelchair accessible" when asked if he needed accommodations.

I normally use a walker as my mobility aid, but in a situation where I have to walk a long distance, I need a wheelchair. 

The ticketing agent found two seats in the loge, upstairs, four rows back. In a live chat online during the transaction, the agent mentioned that the seats were not accessible  but said the venue would accommodate me upon arrival. My husband said: “I will be bringing my wife in a wheelchair and assume there is an elevator that will take us to the loge level.” 

The agent did not reply to this.

After the transaction was processed, my husband said this: “Just to confirm that we’d be able to take an elevator to the loge level since my wife will be in a wheelchair”

The ticketing agent replied: “I’m sorry but there aren’t elevators available at the venue.”

He told my husband to call the venue directly because they would accommodate me.

By hiring a helicopter and dropping me through the roof? Maybe they would have put me downstairs, but my husband chose a loge seat so that I could see over the standing/dancing general admission fans. We didn’t find out what the Wiltern would have done with me: a business trip prevented my husband from going. My able-bodied son took a friend to the show.

When I recently called the Wiltern, the woman who helped me said Live Nation was "wrong” to say the venue would have accommodated me.

She said they would have tried, but there was no guarantee I would get in, even though I had  a ticket. It depends, she said, on how many other patrons show up.

In other words, just as I had concluded in my efforts to get accessible tickets to a Bruce Springsteen concert, it’s a crapshoot when you are person in a wheelchair looking for access to live music shows.

During the holiday season, I had three more disappointing incidents. One came during a company party held at the historic Athenaeum guest lodge at the California Institute of Technology in Pasadena. We had reserved a room for the night, one of 24 guest rooms in the 1930s-era building. The company employee who made the reservation had requested an accessible room for me. She says the person who made the reservation assured her I would get one.

But upon checking in, after a long walk around the side of the building to find a ramp, and winding my way through dining tables and chairs to get to the check-in desk, I learned that my room was not accessible. Indeed, the clerk said, they had no accessible rooms at all.

For a lodging establishment named after Athena, the Greek goddess of wisdom, this did not seem wise to me. 

Fortunately they did have an elevator to take me to my room, which was a substantial distance away. I always bring a toilet-topper with me on out-of-town trips (a device that sits on any toilet to enable me to get on and off) because experience has shown that an accessible room might not be up to my standards. And I make sure I have a collapsible walker that can get me through narrow spaces. If it were not for that, I would not have been able to even get in to the bathroom in our room.

It was so small that the extra roll of toilet paper and the tissue box were in the main part of the room, not the restroom. I could not get into the shower.

And while there are many beautiful rooms and outdoor spots in which the Athenaeum holds functions, there was only one ladies restroom with one handicapped stall, far in the corner by the front desk.

I understand that this is an old building and a private club. But the lodging is open to the public and the establishment often hosts events. And it’s a place once visited by Albert Einstein. Having no accessible rooms and making it extra difficult for the handicapped doesn’t seem too genius to me.

Grrrrrr.

Also in December we were invited to attend a wedding in Phoenix of a good friend of ours. He and the bride-to-be had reserved a block of rooms at the historic Arizona Biltmore at a reduced rate. A shuttle was provided from the Biltmore to the wedding site.

We called the hotel early on to make our reservations. But when my husband told the agent we would need an accessible room, the person said no such rooms were included in the wedding block. They had one discounted regular room left. Or we could book an accessible room for an extra $80-$100 per night. We were planning to stay five nights, so this was a steep difference. We expected better customer service from a hotel that says it is one of the best in the world.

No thanks, we said. We found an accessible room for a lower rate two miles away.

A friend of mine, who advocates for the disabled, was angry when I told her this story. “That’s illegal!” she said.

But we didn’t know that. The ADA provisions are complicated and lengthy. And there is no pocket guide to refer to when I find myself in situations like this. So I just change my plans, grumble and save the story for my next angry blog.

One place I don’t expect to find problems with accessibility is the U.S. Post Office.

After all, it is run by the federal government, which oversees the enforcement of the ADA.

But tell the feds to check out my local post office in Castaic, Calif. That office has one, count ‘em, one, disabled parking space. There is an accessible ramp leading into the office, but it’s right in front of the space. So if you don’t get the solo spot and have to park elsewhere, you must walk quite a distance until you get to the ramp.

Most times, the spot is empty.

But I was particularly galled during the busy Christmas season, when I pulled up to the office with presents to mail. I had brought along a sack to help me carry them as I used my walker. The parking space was taken. I checked: the vehicle had a valid disabled placard. I waited in my car for a spell and then drove slowly around the parking lot.

The driver never emerged from the post office.

So I parked around the corner in the lot, loaded up my bag and pushed my walker the long way around, up the ramp, into the office. I saw no disabled person. After mailing my stuff, I walked the long way back, noticing that the car was still there. 

It was then I noticed the adjacent office in the building houses a credit union. Aha! I thought, the disabled spot holder was probably in there filling out lengthy paperwork.

Who on earth designed a parking lot with a single disabled spot for a post office and a credit union?

Grrrrrrr.

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.

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And there was this gem:

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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 

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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:

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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.

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;

 Don’t bring live animals into your hospital bed;
 Control your visitors;
 and No criminal acts or threats. 

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.