Friday, May 30, 2014

Spring and New Things

"I am thankful that in a troubled world no calamity can prevent the return of spring." -- Helen Keller

I have always loved the shift of seasons.  Autumn used to be my favorite; however, since becoming ill, I find I much prefer spring. After all, it is the season of hope, renewal and rebirth.  As new buds grow on what were once barren trees, I am reminded that change is inevitable, and that winters, no matter how long, do not last forever.

This spring has brought with it a few changes for me. They are nothing of major significance, but so rarely does anything happen in my world that even the slightest activity or modification seems noteworthy.

Earlier this year, my parents bought a new reclining lounge chair to put by the window in the spare bedroom.   So far,  I've been able to sit in it with some regularity, and it's been wonderful.  It feels so good to be in an actual chair rather than a bed, even if I'm still lying down.  There's also something more freeing about being right by a window rather than looking through it at a distance.  I can see more of the bright, blue sky and feel the warm sun as it shines on my face. 


The spare room is adjacent to my own bedroom, so the view is similar.  Still, I get to see my mesquite tree (and all the wildlife that visit) at a slightly different angle, with a better view of the Rincon mountains behind it.  One of these days, I'd love to sit there in the early morning, just before sunrise, so that I can look up at the night sky (something I rarely get to see) and watch the sun come up over the mountains.

I received a new camera over the holidays, which means I've been taking even more photos of the birds and wildlife outside my bedroom window.  The camera has better zoom, allowing for clearer pictures.  Here are a few of my favorite shots from the last few months (click to enlarge):

Hawk (possibly a juvenile Cooper's Hawk)

Lesser Goldfinch

Lizard

Mourning Dove

Male House Finch Feeding His Girlfriend

More Finch Feedings

Two Female House Finches

Curve-billed Thrasher

Round-Tailed Ground Squirrel Munching on a Snack

Quail


Deer


(If interested, more photos can be found on my new Flickr account).

One day in early spring, I was lying in bed with my eyes closed, soaking in some music.  When I opened my eyes, I was surprised by the sight outside my window.  At first, all I saw was a splash of white and black striped fur, and it took me a moment to realize it was a bobcat.  He was actually lying down with his belly up and his legs in the air while he scratched his back in repeated motions on the surface of the ground.  I was stunned!  He was like a big house cat playing in the dirt. I quickly went to grab my camera, but by the time I could snap a photo, he was already standing back up and was on his way out.  Still, it was quite the sight to see!

Bobcat after a Back Scratch

In April, my brother and his family came out for their annual visit.  It's always such a joy to see the sweet, smiling faces of my niece and nephew each morning.  My limitations in interaction and speech allow me little more than a hug and a few whispers of "I love you" every day, which always breaks my heart.  But I'm grateful even for those short, precious moments with them.  They had grown so much since I last saw them. Here's a photo that my father took of them enjoying the view on top of Mt. Lemmon.

On Top of the World

It had been a very long wait, but this past May, for the first time in almost a year, I was twice able to lie outside in the patio lounge chair on our deck.  It was pure bliss.  Each time, the sky was a deep cerulean blue with little brushstrokes of wispy, white clouds.  At one point, I saw a group of  Harris' hawks flying overhead, gracefully encircling each other as they worked together in search of food.  On desert grounds, the cacti were just starting to burst open with colorful blooms, and I saw a white-winged dove feed on a saguaro cactus blossom nearby.  Further below,  I could see lizards, gophers, squirrels, butterflies and bunnies all scurrying about, looking for nourishment.  I savored every minute of it.

Bougainvillea


Soaptree Yucca

White Winged Dove on Saguaro Cactus

White Winged Dove Feeding on Blooms

 Dove on Cactus Blooms

Prickly Pear Cactus Bloom


Turkey Vulture Flying Over Mountains


Bunny


Beautiful View

I've mentioned in previous posts that, as a result of cognitive issues stemming from ME, I have not been able to watch TV or movies in over a decade.  I actually have a drape over my television set so that I can listen to news and a few other shows without being tempted to peek at the screen.  I am generally okay with short clips (such as on YouTube) if there is relative stillness and not much rapid movement. However, viewing repetitive screen changes for even a couple seconds often causes an instant, debilitating crash/setback.

I used to be a big film lover, so it's been hard to have missed out on so many great movies over the years.  Recently, I tried listening to a couple films to see if I could follow along without actually watching, and I was surprised by how well it worked.  As long as the movie is heavy in dialogue, I'm able to visualize it and follow along with relative ease.  I've enjoyed listening to several movies and some documentaries as well.  It's opened the door to a new activity beyond just listening to audiobooks all day long, so I'm grateful for that.

On another note, I decided awhile ago to take a huge step back from advocacy and awareness efforts.  Actually, it wasn't a decision as much as a necessity. The energy expended just isn't worth the potential toll on my health, especially with so few positive results.  However, I continue to sign petitions, donate to causes/research, use Twitter and post to my blog's Facebook page when able.  Of course, I also strongly support and greatly appreciate the ongoing work of other advocates who are still pushing forward to create change, and I do what I can to assist in those efforts.  It is so important that our voices continue to be heard.  For the time being, I just personally need to move away from large scale efforts (such as videos and testimonies) and focus more fully on my health.

And that is one thing that regretfully has not changed.  My health remains the same.  I continue to experiment with various treatment options but, so far, without much success.  I have been taking MAF probiotic 878 for almost two years now, and for awhile, it did seem to help to some degree -- most specifically with cognition.  The improvement was mild, but it was enough for me to take notice and appreciate.  It was the first time in 17 years that anything really seemed to help me, even if only slightly.  It's not clear that the supplement is still providing any benefit, but I continue to take it even if mostly out of hope.

In the meantime, other than my new lounge chair, I generally remain confined to my bed, unable to stand or walk.  I still can't speak more than a few words above a whisper.  I continue to suffer setbacks, sometimes severe, from even the mildest of exertion.  But, for now, I try to take things moment to moment and make the best of what is while continuing to look for solutions. And, of course, most importantly, I remain determined to persevere.  I still have hope that, someday, my own personal spring will finally come. I am so ready for it.

Monday, May 26, 2014

Some Resources for Those who are Bedridden

Years ago, when I first became housebound (and eventually bedridden) with ME, I had very few places to turn.  I was living alone at the time, and while I had some friends and family nearby who were willing to help, my sense of pride prevented me from asking for the wide range of assistance I suddenly needed.  Overnight, I had gone from working full-time to being unable to grocery shop, do my own laundry, clean, cook or otherwise care for myself.  Doctors did not have answers for me, and the ordeal of getting out to appointments in and of itself would often set me back further.

Desperate for help, I contacted various agencies and organizations looking for assistance. However, more often than not, I was turned away.  Unless I required hospice care or had a lot of money to spare, few had anything to offer me.  Indeed, I have been continuously surprised by the scarcity of resources there are for those who are chronically housebound and/or bedridden.  These lack of services became even more evident to me once I began blogging. Unfortunately, I have received numerous emails over the years from other bedridden patients who have been unsuccessful in seeking the same kind of help that I, too, have had such difficulty finding.
     
In light of that, I thought I'd share a few services I've come across in the hopes it may provide some benefit to those who need it.  Please realize that, unless otherwise noted, these are agencies and resources I've found simply by doing a basic web search over time. I am not affiliated with any of these companies or websites, nor do I know anything about the quality of service or expertise they offer.  It's important for anyone to do their own research about an organization when seeking out professional help.

First, there are some services that are provided by Medicare and Medicaid for those who qualify.  For a comprehensive list of what Medicare offers in home health care services, please check out their Medicare and Home Health Care brochure.

Regretfully, many of the services Medicare does NOT offer are those that bedridden/housebound ME patients often desperately need -- particularly those who cannot rely solely on friends and family, or who spend much of their days alone.  These exclusions (if they are the only assistance you need) include personal care given by home health aides (such as bathing and dressing), meal delivery and homemaker services like shopping, cleaning and laundry.

From what I understand, should you qualify, Medicaid offers more services than Medicare.  These services tend to vary by state. For more information, check your state's Medicaid program, or visit http://www.cms.gov/home/medicaid.asp

Fortunately, there are many in-home health care agencies around the country that will provide cleaning, shopping, meal preparation and some degree of medical care, but at a fee. For those who can afford it, a quick online search can provide information on home health care in your area.  Nurse visits can also often be arranged through these agencies; however, generally speaking, doctor visits can not.  Most agencies will instead provide transportation to a doctor's appointment for those who are able (free transportation services are also often available to those who qualify).  However, for many with severe ME, a trip to the doctor's office, even with assistance, is not always possible due to the severe (and sometimes permanent) setback such an outing can cause.

In the last many years, there seems to be a growing number of organizations throughout the country that are beginning to offer physician services in the home. One such organization is the  Visiting Physicians Association.  Also, the American Academy of Homecare Medicine  offers a list of doctors by state who, as a public service, also make house calls.

Please again note that I am offering this information as a resource only and have no other knowledge about these agencies beyond what is listed on their website. Also, keep in mind that while these doctors make house calls, they may not (and, in most cases, probably do not) have extensive or even basic knowledge about ME.  Regretably, it is very difficult to find a doctor well-informed about the complexities of this disease, particularly in its severest form.  It is even harder to find one who is also willing to make house calls.

For those who may not be aware, Dr. Charles Lapp, an M.D. in North Carolina, recently put a call out to severely ill/bedridden ME patients. Right now it appears he is merely collecting the information, with possible hopes of  trying to find ways to provide care to these patients in the future.  For more information about contacting Dr. Lapp, please see here.  If nothing else, it's important for doctors to realize how many of us are out there looking for help. 

Specialty doctors for basic dental or eye care at home can also be extremely difficult to find. However, there are some dentists and optometrists who will offer limited care in the home for those who are bedridden. You can contact your state's dental or other specialty organization to ask if they are aware of any doctors in your area who make housecalls. For example, with some persistence, I recently found an optometrist willing to come to my home by emailing my state's optometry association.  A couple years ago, through the help of a local acquaintance, I also found a dentist in my area who routinely makes house calls,  which turned out to be a true life-saver for me.  I would never have survived such an extensive outing to fix all the issues I was having.

Many cities also provide mobile services for ultrasounds, EKGs and X-rays (with restrictions), provided you have a doctor who will order the tests for you.

Please note, however, that many of these doctors and services do not accept insurance, or insurance will not pay because the services are provided in the home.  This of course means that, unfortunately, these options might not be feasible for most patients.

I've also received many emails over the years asking how I avoid bed sores, or what kind of products I use to ease my comfort or accomplish certain tasks throughout the day. I am fortunate that I am well enough to sit up and turn myself in bed, and can still get up to use the bathroom on my own each day (the latter with the help of my wheelchair).   As of yet, bed sores have not been an issue for me. However, there are products available to those who find this a concern, as well as other products designed to make life a bit easier for the bedridden. AllegroMedical is one site where you can purchase such items, but there are many other websites available as well.

Those who have read one of my former blog entries, Eyes Wide Shut, know that, as a result of cognitive problems stemming from ME, I rely on a text-to-speech program to help me navigate online and to read all my emails and other items for me.  There are also several speech-to-text programs available for those who would find that helpful.  I don't have an iPod or iPad, but I know some versions have a voice application called Siri that could be useful to some patients.

I also participate in my local library's Books-By-Mail program, which is a free service that lends audio and large print books by postal mail to the visually impaired and disabled.  Many libraries have similar programs.

In addition to all the above, Emily Collingridge wrote an excellent book called Severe ME/CFS: A Guide to Living.  It is designed specifically to help provide a wide range of  resources to those with severe ME and/or CFS (geared towards the UK, but useful for all).  Her book can be purchased through her website (http://www.severeme.info/).  

Lastly, this illness, especially in its severest form, is incredibly isolating. I have received many emails requesting information on how to meet and communicate with other bedridden patients.  This is difficult for many reasons, but primarily because most bedridden patients are too sick to be online for any length of time, and thus cannot fully participate on social media or other similar forums.  However, for those who are able, sites such as Phoenix Rising HealClick, ME/CFS Forums and Facebook social groups like Severe ME Chat and Support. might be useful and provide some comfort.

Perhaps the most helpful piece of information for those bedridden with ME  is simply knowing you are not alone.  Here is a list of just a few blogs and websites written by or devoted to those with severe ME (more links can be found to the right of this page):


*More blogs have since been added to the above list after others brought them to my attention.



"Just knowing you're not alone is often enough to kindle hope amid tragic circumstances."
― Richelle E. Goodrich
~~~

If others have additional resources to offer on any of the above, please share them through the comments section below. My research abilities are restricted due to my physical limitations, so I'm certain there are things I have left out.  Also, the resources listed in this post are specific to the U.S. since that is where I live.  No doubt resources in other countries will differ.  Thanks for understanding!

Saturday, January 25, 2014

Through a Window

Last spring and early summer, I was able to lie outside for an hour or two for the first time in nearly three years.  It felt glorious.  I hope soon to get another taste of that little bit of freedom. However, for now, my health does not permit it.  And so, for the time being, I remain indoors, looking out through bedroom windows.   Here's just a tiny glimpse of my small world taken over the last several months.


Deer


Deer Eating Cactus Blooms


Bobcat!


Cactus Wren


Western Bluebirds in the Distance


 Lesser Goldfinch


Another Lesser Goldfinch


Male Finch


Finch Takes a Nap at the Feeder


Female Finch Keeps Watch


Pyrrhuloxia (Type of Cardinal)


Antelope Squirrel


Harris' Hawk


Sharp Shinned Hawk (standing on one foot)


Man on the Mountain
~~~


Meanwhile, indoors, spring blooms in winter.  It reminds me to stay hopeful.


Hydrangea (before and after)


Amaryllis Before


Amaryllis After

"Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops at all."  ~Emily Dickinson
 

Thursday, August 8, 2013

Awareness Video (Revised): What is ME/CFS?

A few years ago, I created a short, informational video in the hopes of increasing awareness about ME -- the extremely serious and debilitating disease from which I suffer.  Due to my health, it had taken me over four months to complete. 

However, since that time, some of the research changed, and the video therefore became outdated.  Over the course of several months, I have therefore slowly worked on revisions -- updating information and adding more patient photos.  You can find the new version below.  Please feel free to post and share widely in order for it to reach a broader audience.

I should note that the majority of patients featured in this video are on the more severe end of the spectrum.  They are shown here because they are otherwise not often seen.  Bedridden and/or housebound, these patients are typically unheard, unnoticed and forgotten.

My goal is to help raise awareness about the harsh realities of this illness and the urgent need for increased funding.  With more funds for research, there will be more answers, and with answers there is hope.

Thank you for watching, and much thanks to all those who kindly allowed me to use their photos and to briefly share their story.


Note:   In using the term ME/CFS for the purposes of this video, CFS refers to the Canadian Consensus Criteria and the International Consensus Criteria.  There is some controversy about this issue.  For more on the importance of definitions, please refer to David Tuller's excellent article "Chronic Fatigue Syndrome and the CDC: A Long, Tangled, Tale."


This video was originally uploaded on August 7, 2013 and re-uploaded on August 31, 2013 in order to make a few additional small edits.  Thank you for your patience.

Sunday, July 14, 2013

On Memories

"I remember everything!"

As a little girl, I was known to frequently make this rather bold (and no doubt equally annoying) proclamation. There was nothing in my life, I proudly declared, that I didn't remember. This drove my older brother, ever pragmatic, a little bonkers. "You can't remember everything," he'd tell me. "It's impossible."

My mother once tried to ease his frustrations by reminding him of the fact that I was only five years old. Not much had happened to me in my life yet. I didn't have all that much to remember.

Memory loss, particularly in terms of short-term memory, is one of the many symptoms those with myalgic encephalomyelitis often experience. Fortunately, it's not one of the symptoms that has thus far plagued me. Despite suffering severely from other cognitive difficulties as a result of ME, my memory remains strong.

Sometimes I can't help but wonder if part of the reason I can still recall so much from my past is the same reason suggested to me as to why I could recall so much from my childhood.  That is, very little has happened to me in the last many years.  While my friends and family have gone on with their lives, experiencing a variety of new and exciting things, my own life has essentially remained stagnant.  As a result, I am forced to spend much more time in my memories than others typically do.

A few months ago, I listened to the audio version of Roger Ebert's moving memoir, Life Itself.  As most know, Ebert lost his ability to eat and speak after the return of his cancer required surgery to remove his jaw.  For a time, he was confined to his bed, unable to communicate.  He writes, "In the days of my illness, unable to walk, I started to walk around London in my mind. ...I had nothing to do but lie in bed with my memories."

Ebert later goes on to say:
In these years after my illness, when I can no longer speak and am set aside from the daily flow, I live more in my memory and discover that a great many things are safely stored away. It all seems still to be in there somewhere. …You find a moment from your past, undisturbed ever since, still vivid, surprising you.
I, too, can sometimes get lost in memories.  I close my eyes and I am seven years old again, riding my bike with neighborhood friends to the local convenient store, where we purchase a chocolate bar or ice cream treat for 25 cents each. I can still see the colorful display of candy and treats, momentarily overwhelming me with all  the possible choices.

Sometimes, I close my eyes and find myself returning to Boston, walking through the quaint and cobblestone streets of Beacon Hill, then down through the gardens and past the swan boats of the Commons, and finally over to Newbury Street, which always comes alive at nightfall. 

Later,  I am back in London.  Then Paris.  Venice.  San Fransisco.  New Orleans. Disney World. The beaches of Hawaii.  Or any number of the many places I was fortunate enough to travel to when I was healthy.

Often, I relive the smaller moments of life too.  I close my eyes and I remember what it was like to wake up and freely move from my bed.  To take a shower, walk to the kitchen, cut up some fruit and make myself a simple bowl of cereal.

I close my eyes and I am anywhere in past time, living life as a healthy person again. 

This is not to say I live in my memories, of course.  It's only to say that I am grateful for them. 

I got sick when I was very young -- just a few years out of college.  But I am lucky that I had so many adventures and experiences in those 24 years that I can now reflect back upon and relive in my mind. Some people with this illness aren't so fortunate in that regard.

I think of other sufferers like Emily Collingridge, who first fell ill with ME when she was just six years old.  She spent virtually her entire life sick, and for much of that time, Emily was fully housebound and, eventually, completely confined to her bed.

Just try to imagine that for a moment, especially if you are someone who has been blessed enough to have a life free of disease.  Imagine what it would be like to get sick as a very small child, so that almost all of your memories from your past are of being horribly ill. Emily, who died from complications related to her illness when she was just 30 years old,  likely had very few recollections of what it was like to be healthy. 

And then there are those like my fiance, who developed ME at the age of 19, and who actually does experience the symptom of memory loss. While it's primarily the short-term that Jim struggles to recall, his long-term memory is also affected.  He often expresses frustration at not being able to remember many details of the few years he spent growing up in France.  Or of his time in high school, or college, or getting his PhD.   He remembers the core of his life, of course, but the memories are fragmented, with large gaps in between.

Memories are an integral part of how we define ourselves.  They are a scattering of our most precious and important moments that, strung together, create within us a story we can then tell each other about who we are.  I can't imagine what I'd do if I didn't have those memories to look back upon and remind me of who I was when I was healthy.  They provide me not just with glimpses of what once was, but of what may someday be again.

And so I close my eyes once more, and I choose a memory.   Today, I return to the Grand Canyon and try to remember what it was like to stand at the edge of something so majestic.   In doing so, my memory also becomes my wish.  Someday, I hope, I will again be standing at the edge of something remarkable, and I'll no longer have such a need to look back.

Tuesday, May 28, 2013

Small Victories and a Few Sweet Moments

It has been quite some time since I posted to my blog. This is in part because I haven't felt well enough to put my thoughts together in any kind of formal, unified manner. It's also in part because, being bedridden, not much happens in my life that feels all that worthy of noting. I wake up each morning, I check my e-mail, I eat some food, I look out the window, listen to some audiobooks or the radio when able, then -- exhausted from this minimal activity -- I am forced to go back to sleep. Day in and out, year after year, over and over again.

Occasionally, though, things do break from the norm.  This past winter, for example, I woke up one morning to a rare dusting of snow on the ground. As a native New Englander, this would hardly seem worth mentioning. However, having lived in Arizona for 15 years now, the sight of snow accumulated on the ground (versus merely gracing the tops of mountains) feels like some sort of magical event. Thus far, I've only seen it happen twice.


Of course, this being a desert, the snow had completely melted within a few hours of morning sunlight.

In other news, this past March, Jim and I celebrated our 10th anniversary. He sent me a beautiful bouquet filled with 10 unique flowers to represent each year. It was incredibly sweet and thoughtful of him, as always. Our relationship continues to be long distant as a result of our health, but it remains as strong and rewarding as ever.


In April, my brother and his family came out to visit. I got to see them for the first time in two years. As with their last visit, my health only permitted me to spend a few minutes with them each morning. It was just enough time for me to enjoy seeing their smiles every day, give them a hug and tell them I love them. As much as I yearned to spend more time with them, I was grateful for every moment we were able to share.

I also loved to hear about some of their adventures as they visited various tourist sites in the area.  Here's a photo of my adorable niece and nephew at Sabino Canyon, which was one of my favorite places to visit back in my healthier days (photo courtesy of my brother).



When you have severe ME (or, for that matter, even mild to moderate ME), life becomes all about the small accomplishments and the rare but sweet moments of slight reprieve.  Perhaps that's why, when I got to move from a bed and lie outside for the first time in over two and a half years, it felt so amazing and utterly liberating to me.


This was the first occasion in almost three years that I really felt well enough to even consider lying out. It also helped that we seem to have found a way to make it a bit easier for me, eliminating the need for a ramp. My parents move the lounge chair right up to the french door, so that all I have to do once they wheel me to it is plop down from my wheelchair. Getting back up is a bigger challenge, but thus far, I seemed to manage it without too huge a setback.
 
It's one thing to see a small patch of sky from your window every day, but it's another to have it right above you.  I tried to soak it all in as best I could.



Spring is such a beautiful time of year here, with all the colorful cactus blooms brightening up the desert.  Everywhere I looked, I saw tiny splashes of pink, yellow, red, white and orange.






I also loved seeing all the tree branches gently swaying in the wind as all sorts of different birds sang their pretty songs.  It was almost like watching nature put on some sort of graceful ballet.

My own bedroom window continues to allow me momentary glimpses of other lovely sights as well.   On one recent Sunday morning, two deer showed up and decided to lie out under the shade of one of our mesquite trees for well over an hour.  They were beautiful.




Apparently, much like cattle, deer will lie down in a secluded place to chew and digest their food. I was glad they chose a spot so close to my window where I could watch and admire them.


And that about sums up some of the basic highlights of the last six months of my life.  There were plenty of negative highlights as well, of course, but I'm choosing not to focus on those for now, as there's no sense in reliving them in any detail.  The repeated setbacks and crashes that inevitably come with this disease often can be so brutal, persistent and difficult to put into words that, as soon as they lift even slightly, one doesn't want to look back.  

Overall, my health remains the same. I am still mostly bedridden and unable to speak much more than a few words above a whisper.  I still can't stand, walk, read, take baths, watch TV or fully care for myself.   However, thanks to small victories and a sprinkle of precious moments like the ones above, I also still have hope.

________________________________________________________
Note:  After a long break, I am back on Twitter!  However, I lost all my followers when I deleted my account.   If you'd like to follow me or re-follow me, I can be found here: @DreamsAtStake