Saying Goodbye to My Chronic Friend Laurie from Hibernationnow

Laurie heading to her next destination. 

It's been a little over a month since my friend Laurie passed away from acute interstitial pneumonitis, a form of acute respiratory distress syndrome (ARDS).

During her illness, her husband Dan kept all of her Facebook friends informed of her situation with posts to her timeline. I truly appreciated him taking the time to include us, even though most of us had never met him or Laurie in-person.

After he shared the news that she has lost her battle, he made the generous offer to post our tributes on her blog. You can read my tribute here: In Memory - Selena: Until We Meet Again.

I found it very difficult to write the post I submitted. I think it was because I felt like I wasn't a very good friend to Laurie because of my chronic illnesses. I felt like our friendship had a lot of pauses - times when our conversation got put on hold because one or both of us were having problems with our health that precluded all other activities, including socializing. Now that she is gone, I mourn all those lost opportunities for getting to know each other better.

Laurie got sick in February 2015,  just around the time I was recovering from fibroid surgery at the end of January. Given the nature of her recent illness, her progression from having the flu to pneumonia to respiratory failure, I missed the opportunity to talk to her before she got placed on a ventilator.

Sadly she was never removed from the ventilator.

I know for certain that her suffering has ended and for that I feel grateful.

I also keenly feel the loss of her presence in my life. There will be no more blog posts, tweets or Facebook status updates. I can't just send her a quick Facebook message, text or call her up on the phone. All these little ways we had to keep in touch with each other, ways I assumed we'd always be able to keep in touch, no longer connect me to her.

I do admire the way that her husband handled this whole situation and the efforts he made to keep her chronic friends in the loop during this difficult time. I see myself having a conversation with my own hubby soon about how I'd like him to handle things should something happened to me. Because the reality of my life with chronic illness is that most of my friendships really do take place through social media now.

Please head over to Laurie's blog Hibernationnow and read all the tributes posted there. They are a heartfelt collection of remembrances for someone who was special and important to me and a lot of other people living with fibromyalgia, dysautonomia, Hashimoto's thyroiditis, chronic fatigue syndrome and a host of other chronic illnesses.

I made the effort to write my post in Laurie's unique and original style, something a bit different from my voice here on my own blog. I felt like putting myself in her writer's shoes was the best way for me pay tribute to her.

And yes, she actually appeared in one of my dreams the day that she died, as if to nudge me in the direction she wished me to explore in my post.

Until we meet again Laurie, (((gentle hugs))), love and fondest thoughts.

Your very real Facebook friend and fellow chronic illnesses warrior,

"Sarita"

Saying Goodbye to a Chronically Awesome Friend

"Live fast, die pretty."  That's what one of my chronically awesome friends used to say.  Used to, because she died this past Sunday from complications of her multiple chronic illnesses.

As I sit here trying to catch up via social media to find out just what went wrong, I see once again that she and I share two of the same illnesses: fibromyalgia and liver-related diseases.  These are the reasons we connected over two years ago on Twitter.

Then when I shared my adventures of going to the Mayo Clinic in Arizona for my dysautonomia work-up, she followed with interest because she was thinking of making the same trip to get her assorted illness worked up and her treatment better planned and organized.

In the end, we both agreed:  our illnesses sucked and the time and expense of traveling to the Mayo Clinic for a workup and recommendations was well worth it.

Now I don't want you to get the wrong impression--we were really just acquaintances.  I am not privy to the details of what lead to her recent departure. What I do know is that she had been in and out of the hospital during the last several months and receiving home health care in between.  A mutual friend shared that she thought she might have picked up an infection while in the hospital that, in the end, her chronically compromised immune system just couldn't fight it off.

Her close friends say that she died a fighter and a warrior, comforting her friends to the end.  I see the evidence in her social media footprint that she knew the Grim Reaper was close, but she managed to stay several steps ahead of him up to the bitter end.  She relished her wins against him.  And she relished her last birthday in November and the recent Christmas holidays, events she was able to enjoy despite his presence offstage, lurking about in the wings.

I know her friends and family find comfort in the fact that with her death, her pain and suffering have ended.  I acknowledge this as well.  But I am also upset that in life she wasn't able to find the pain control and disease management she needed to have an acceptable quality of life and to stay alive a while longer. I know that these were issues she struggled with for years.

Which leads me to ask demand: when will medicine truly alleviate our pain and suffering?  Because I know I don't want death to be what finally takes away my chronic pain, chronic fatigue and the assorted other symptoms of my chronic illnesses.

Before chronic illness destroyed her healthy life's plans, my friend was a honest-to-goodness, real life ballerina.  So today it gives me comfort to think that she is finally able to dance again.  Yes, she is dancing in heaven...

Goodbye my friend.  Rest in peace.

PFAM - The Fright Files: Stories of Medical Mistakes

Look, I know the supernatural is something that isn't supposed to happen, but it does happen.

~Dr. John Markway, The Haunting, 1963  

Halloween is here once again, the time of year we dress up like ghouls and goblins, head out and ask total strangers for a "Trick or treat!" Having grown up in the era of razor blades in apples, when hospital radiology departments offered free x-rays to ensure your haul was safe to eat, this annual tradition still seems risky to me.  But it doesn't stop the trick-o-treaters from coming to my door every year...

While Halloween is just one day out of the year, the real truth is that tricks and treats happen to us all year long.  Take health care for example.  We keep consuming health care even though, every 7 days, the number of hospitalized patients killed by medical mistakes would fill 4 jumbo jets.  Dr. Marty Makary says that if medical mistakes where a recognized cause of death, they would be ranked number 6, right after accidents and before Alzheimer's disease.

Now that is some really scary stuff.

While it is true that dead men, and dead patients, tell no tales, their families do, and rightfully so, through the media, lawsuits and formal grievance procedures.  But what about the rest of us, fortunately spared an untimely death, but still receiving care that is erroneous, sub-standard or unneeded?

According to ProPublica, an independent, non-profit investigative journalism newsroom, most of the patients affected by medical mistakes do not file formal reports about them and they think this is a problem for all of us.  I found their article Why Patients Don’t Report Medical Errors to be an informative primer on this subject.

Since one of the barriers to reporting errors is knowing who to contact to file a formal grievance, I recently put together a resources list for those living in the United States here.

So I asked participants in this month's Patients for a Moment (PFAM) blog carnival to be brave and courageous. I wanted them to write about the ways that health care has scared them, injured them or let them down.  I hope they inspire you to do the same, because I think to get better health care we all need to be empowered to discuss every aspect of it: the good, the bad and the ugly.

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Poor Iris!  Some pretty scary things happen with her medical care when she was in her 20's, long before she was diagnosed with lupus.  Seems her doctors and other health professionals should have given her more information when they obtained her consent to carve her up and stick a tube down her throat.  Read Medical Horror Stories over at Sometimes, It is Lupus.
         
For some of us, nothing causes as much dread and foreboding as anticipating "the talk" from our doctor about how we need to lose weight.  Kathy from FibroDAZE advises caution though if you doctor suggests taking newly-approved Qsymia and Belviq to help you shed the pounds.  These drugs have the potential to cause some pretty horrific side-effects, which has got Kathy thinking Obesity Has Gotta Be Healthier Than This.

Witches are scary, with their evil spells and potions, like the one from the fairytale Snow White who said, "Take this apple, dearie. Go on. Have a bite."  Duncan Cross knows what is even scarier.  It's when a witch is disguised as a doctor and encourages you to take a drug that turns you into a...well, you'll have to go find out:  Things I Blame on Prednisone. 

Maniacal doctors experimenting on patients, medical procedures conducted without anesthetic and bone-chilling screams; these things don't just happen in the movies, they can happen to you at your next doctor's visit.  Shruti of Lifestyles of the Ill and (mostly) Blameless shares her true story about her encounter with "Dr. Frankenstein" in Tales from the Emergency Room Crypt: Spinal Tap.  It sure sent shivers down my spine!

Oh the creatures of Halloween--zombies, vampires, werewolves and witches--each doing something different yet equally frightening, like eating brains or drinking blood. Did you know there are over 60 different kinds of doctors practicing in our medical system?  They all do something different too and sometimes you have very good reasons for needing more than one of them as Rachel points out in her post #NHBPM - How ridiculous! at Tales of Rachel.

Let me be clear here: it's not just doctors making mistakes or ignoring patient feedback.  In Sometimes The Truth Is Scarier Than Fiction: A First-Hand Account Of A Medical Mistake, Leslie tells the tale of a nursing error that landed her in the hospital for 3 days.  Yikes!  But she says that's not even the most troubling part of her story.  Eek!  See for yourself at Getting Closer to Myself.

Restricting your T.V. time has to be one of every kids' nightmares, especially when that Halloween marathon of Twilight Zone episodes is about to begin.  But can you believe this punishment got imposed on Rachael all because of a drug side-effect?  Read this truth-is-stranger-than-fiction story and its sequel at Offbeat Follies: Mistakes of the Medicinal Kind and The Ghost of Douchebags Past.

Halloween tricks--we all hate them. We hate health care trick too.  Raise your hand if you, like Sharon of After Gadget, have even gone to a doctor's office that wasn't ADA compliant.  What about a doctor who refused to treat you?  You can all put your hands down now and proceed to Waspish Wednesday: Yes, Lyme DID Cause This.

Who doesn't fear that Halloween staple, the haunted house?  Unfortunately haunted houses aren't the only places where weird, shocking, annoying and unexplained things happen.  See Selena's reflections on health care disappointments in Lessons I Learned as a Patient in the UCLA Health System here at Oh My Aches and Pains!

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That's all for this edition.  I hope you have as much fun reading this as I did putting it together.

Please join us again next time!  Amanda at Crazy Miracle is hosting the next edition, so please visit her blog and look for her call for submissions at the beginning of November.

We will also be looking for hosts for the carnival for next year, 2013, so please consider volunteering.  Contact Leslie if you are interested.

Want to learn more about PFAM?  Check out the website and Facebook pages.

A Question: Why Should It Trouble Us?

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A friend on Facebook asked:

There was a time when we were not: this gives us no concern. Why then should it trouble us that a time will come when we shall cease to be?

I replied:

Because now that we ARE, we dread ceasing to BE. (At least I do!)

My Blue Christmas

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I write this post for those of you experiencing things less than "merry and bright" this holiday season. Several people I know are dealing with the death of or serious medical news about a loved one right now. Which reminds us all that life doesn't stop just because it is the holidays.

I speak from experience on this topic: tomorrow marks the fifth anniversary of the death of my Dad from complications of Alzheimer's disease. The Christmas that followed three days later felt surreal. I didn't feel happy or joyous. In fact, the whole time during Christmas dinner I suppressed the urge to start crying. My mood fit with the dark, cold and rainy days of January better than the upbeat and jolly holiday season.

The next year I felt conflicted during the holidays. As with any anniversary, I remember my Dad's final days as December 22nd approached. Those images sharply contrasted with every upbeat message broadcasted in Christmas carols and TV specials. It made the process of remembering my loss feel quite out of place with everyone else's presumed state of mind. It left me feeling alone and unsupported in my grief.

People just aren't focused on the sad aspects of life during the holidays.

Then I remembered a line from Lucy in the TV special A Charlie Brown Christmas:

Look, Charlie, let's face it. We all know that Christmas is a big commercial racket. It's run by a big eastern syndicate, you know.

This quote spoke to how I felt: like Santa Claus brainwashed the whole world and now sugarplums, presents and big holiday feast completely and totally took over everyone's minds. Everyone acts like life suddenly stops during the holidays. The world goes into some kind of fantasy mode filled only with good cheer, mistletoe, eggnog and a light sprinkling of snow. Pain and suffering magically disappear with the drop of a few coins into a Salvation Army bucket or the donation of a toy or canned food into a collection bin.

Yes, I learned first hand that it is difficult to deal with the hard things in life during the holidays. The contrast between real life and the fantasy of Happy! Happy! Joy! Joy! is at its greatest now. It definitely makes dealing with pain, loss and grief even more difficult. You may not feel the way everyone else does right now, but that doesn't mean there is something wrong with you. Just know that you are not alone and it's O.K. not to feel happy.

That said, I want to point out that in a myriad of Christmas songs, I found that Elvis quite surprisingly understood how I felt. I rediscovered the song Blue Christmas in 2004 and found it especially comforting when I was dealing with my Dad's death. Perhaps it can help you get through your difficult holiday time too.

It's Not the Bus You Need to Worry About

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Everyone jokes about getting hit by a bus tomorrow. I'm not sure how this phrase became synonymous with experiencing an unexpected tragedy, however I am reassured by The Explainer, Juliet Lapidos at Slate.com, that the odds of this happening are very low. According to a footnote to an online article she wrote about health care titled The Explainer Gets Hit by a Bus:

According to the Department of Transportation, 10 pedestrians and bicyclists died in 2007 as a result of being run over by a cross-country or intercity bus in the United States. That's out of 5,400 people who were killed by vehicles of all types, including cars and trucks. (Not everyone who gets hit by a bus is killed, of course, and these numbers leave out all accidents involving municipal bus lines.)

So what should we really be worried about? Here are some statistics from the website Funny2.com, compiled from many sources by Howard Daughters, that sheds light on some of the things we should really be concerned about:

Chance of having a stroke: 1 in 6

Chance of dying from heart disease: 1 in 3

Chance of getting arthritis: 1 in 7

Chance of suffering from asthma or allergy diseases: 1 in 6

Chance of getting the flu this year: 1 in 10

Chance of American man developing cancer in his lifetime: 1 in 2

Chance of an American woman developing cancer in her lifetime: 1 in 3

Chance of a man getting prostate cancer: 1 in 6

Chance of a woman getting breast cancer: 1 in 9

Chance of getting colon / rectal cancer: 1 in 26

I mention these statistics not to be morbid or alarmist. I mention these statistics because I learned yesterday that my Internet friend who passed away suddenly on September 28 died from complications due to a massive stroke. A friend of the family shared this information with me and pointed out that she did have problems with high blood pressure and high cholesterol and was under a lot of stress from her job. It's hard to know if she was doing everything she could to address her health issues or if this stroke could have been prevented. I continue to be struck by the fact that she was only 49 years old at the time of her death, perhaps because I am currently in my mid-40s.

So you see, she didn't get hit by a bus and I probably won't ever be hit by a bus in my lifetime either. Her death is a wake-up call for me to start doing more about the things that might actually cause my death one day. Perhaps her death serves as a wake up call for all of us to do a better job of taking care of ourselves.

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How Do You Say Goodbye to an Internet Friend?

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I recently found out that a friend on Facebook suddenly died five days ago. I didn't know her well at all; I befriended her to increase my number of neighbors in Farm Town, an online game I play on Facebook. We occasionally "spoke" when she came to my virtual farm as part of the game, to complete a task for coins or water my flowers. Our conversations began when she typed: "Hi, how are you?" or "Your farm is very pretty." or "Where have you been? I haven't seen you online for a while." She seemed like a genuinely nice person.

How did I find out she died? I saw a post in my Facebook news feed yesterday that obviously was not written by her, giving details about her funeral service. I immediately went to her profile and read a series of posts from a niece, a nephew, a daughter-in-law and friends. I don't know how she died, but it was clear from the posts that she was in a coma and everyone was pulling for her to come out of it. I want to know the details, but no one has posted that information on her wall.

It is sad, but because of her death I now know more about her. She lived in South Africa; she was divorced; she was a mother, grandmother, aunt and friend to many. She worked in a real estate office. She was only 49 years old. I searched for an online obituary and was unable to find one.

She obviously touched my life, but now I am alone with my grief. Unlike my in-person life where I share my family and friends with many other people, this was an exclusive one-on-one friendship that I shared with no one else. So now I am left, by myself, to make sense of her early and untimely death, with more questions than answers swirling in my brain. I can't jump on a plane to South Africa to attend the funeral. I feel awkward about emailing her family and asking for more specifics. The best I can do is take the final gifts she sent me in Farm Town and create a little space on my farm to memorialize her.

I am left wondering what is the best way to say goodbye to an Internet friend. And it's got me thinking about what plans I should make now to ensure I can say goodbye to the friends that are part of my online life after I log off for the last time.

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Am I Haunted?

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I just checked the NaBloPoMo website to see the blogging theme for October: haunted. I laughed and thought, "Of course that is the theme; it's October, Halloween month." Then I asked myself, "Am I haunted?" and was disturbed when I heard my answer: yes.

I'm not talking about ghosts and goblins; at least I don't think I am. I sorta believe in ghosts; I think my Grandma Devine tried to visit me the night after her funeral, which really freaked me out. I told her (and anyone who happened to overhear me) that I didn't want to see her again until it was my time to follow her. Weird, I know, but as much as I really missed her I didn't want her hanging around and scaring me all the time. I hope that was an O.K. thing to say; being 16 at the time and reeling from the first significant death in my life I know I was ill-prepared for a visit from beyond the grave.

I must believe in ghosts, because after my mother's death, I slept with a sleep mask over my eyes for at least a year afterward. I really wanted to avoid a visit from my mother. Despite my encouragement to discuss the subject, I do not believe that my mother ever accepted the fact that she was dying. But she died anyway, even if she could not discuss or accept it, right in front of me, my husband, my two sisters, my brother-in-law and my Dad. It was quite a last performance, which served to deepened my resolve to avoid a visit from her angry ghost.

My issues with death and dying aside, I admit that I am haunted by certain aspects of my past. Like everyone else on the planet, I wish I could change how I felt about some things and let them go. Other things I thought I had left behind sometimes roar back to life when I least expect it. I know I wrote a post not too long ago about letting go of my survivor's guilt about my cancer experience. It seems writing that post got me in touch with some of my other issues that need the same attention.

I'm not sure I'm going to write every day about the theme of haunted, but then again, I said that with other monthly blogging themes and wound up with a month's worth of posts on tomorrow, routine and heroes. I guess on of my blogging motti* should be "Never say never."

* = plural of motto

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My Routine: Working on Letting Go of Some Old Routines

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I admit that my response was to feel guilty when I heard that two of my high school classmates had died in the month of June 2009 from breast cancer. This guilt is a 21 year routine with a fancy name: survivor's guilt.

Truth be told, 21 years is a long time to feel guilty...

I think it started after my cancer treatment, when I read a letter my doctor had given my parents for the medical insurance company. My doctor wrote that I had only a 33% chance of surviving after my cancer diagnosis. I was shocked. Apparently no one thought to inform me of this fact at the time I was diagnosed with acute promyelocytic leukemia, which is very strange, given that I was 22 at the time of my diagnosis, an adult by society's standards. After being told I had cancer and would be admitted to the hospital that same day, I do remember my parents being taken aside by the doctors for a discussion behind a closed door without me. In retrospect, I believe the doctors informed my parents and they all chose not to tell me.

Why is this significant 21 years later?

At that moment I discovered just how close I was to being in the 67%, that is, not alive at that moment, I felt overwhelmed realizing that I had been so close to death. So remarkable and terrifying, this knowledge after-the-fact filled me with a fear of dying that I carry with me to this day. The information literally freaked me out. Then I got really angry that no one had told me this. After all, it was my right to know how grave my situation was. I'm not saying I would have done anything differently, I just feel I had been robbed of the opportunity to feel that fear in the appropriate moment and process it during my cancer treatment experience.

Fear after the fact is a strange beast indeed. I began to question why I was alive and why some of the young adult cancer patients I met and befriended were not. After all, there were no obvious differences between us. I did not see anything different, special or exceptional about myself that would entitle me to be a survivor over my friends. We all deserved a chance to keep living. I could not make sense of it; I wanted desperately to make sense of it.

As for my fear of dying, there may be hope for me yet. I recently discovered this quote:

"We can help those afraid of dying..
...but how do you help those afraid of living?"
--Plaidypus

Now that I live with chronic illness---chronic pain, chronic fatigue, dysautonomia, Hepatitis C infection and Type 2 diabetes, all late effects and complications of my cancer treatment 21 years ago---I wonder what my friends who didn't survive cancer would think. Would they have wanted to survive their cancers too only to go on to deal with a whole range of long-term and late effects related to the cancer treatment they received? Living with chronic illness can be a real ordeal and there are days when, for a few microseconds, I regard being a cancer survivor as not that much of a blessing. What I have gained in extra years of life has been paid for by losses, unrealized dreams, worries, struggles and disappointments. Thank goodness I am flexible in the face of change, otherwise I would be in a million little pieces by now...

My friend Julie, who lost her battle with colon cancer in 1989, used to say that cancer was like the sword of Damocles: you never knew when it would swing the other way and chop off another piece. Watching from her place in heaven, I think she would also say that life as a cancer survivor is an equally precarious situation in which chance delicately dictates whether further tragedy will strike.

Perhaps now I can let go of my survivor's guilt, knowing that cancer survivorship, like cancer, is also a double edged sword.

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