Dreams at Stake: 2014

Tuesday, December 30, 2014

18 Years and 18 Wishes

It was December 31st of 1996 when I first fell suddenly ill with mononucleosis. I never recovered, and was later diagnosed with the neuro-immune disease myalgic encephalomyelitis (ME).

Over time, in large part due to the lack of appropriate medical advice I received those first few years, the illness grew in severity until I collapsed and became mostly bedridden -- so sick that I still can barely speak more than a few words at a time in a voice just slightly above a whisper.

As this anniversary approaches and I reflect on so much time lost to this disease, I find myself experiencing a sense of grief over a life not fully lived. Generally, I don't dwell on such things as it is just too overwhelming. As I've mentioned in previous posts, in order to cope with such a degree of loss, I've had to learn to shift my thinking and focus on what things I can accomplish each day, rather than on what I cannot. Living in the moment is the only way to maintain a sense of normalcy, and to find joy in what gifts still remain.

But 18 years is a long time to be this sick. It's an entire childhood lived into adulthood. It's nearly two decades of potential life adventures and wonderful memories never experienced and irrevocably lost.

Recently, I stumbled upon a blog written by a young woman with severe ME who has spent much of her youth confined to her bed. She was about to celebrate her 30th birthday and she had 30 wishes she wanted her readers to help her fulfill. Most were not wishes she wanted granted for herself, but for others. She wanted you to join the bone marrow register on her behalf, to donate blood, to give to a charity, to sew a blanket for others who are bedbound.

As my 18th "sickiversary" approaches this year, I have decided to compile a similar list of my own. They are 18 wishes of sorts. More specifically, they are 18 things I desperately wish I could do, but can't. And while I continue to maintain hope of someday regaining my health and being able to do all the many things I've so longed to do, that day has unfortunately not yet come.

So, today, I ask you, if able, to choose just one item from the list and do it for me, as well as for all the others like me who have been bedridden and/or housebound with this disease for far too long.   In doing so, you will give this anniversary more meaning, and you will help transform it into a day of wishes fulfilled rather than of wishes lost. It would be an immeasurable gift to me to know even one person had a small moment in their day that was just a little more fulfilling than it might otherwise have been.

So, if you are healthy and able, and you have time in your busy day, please try to do just one of the following:

1. When you wake in the morning, take a moment to fully savor the feeling of good health.   Breathe it in and let yourself feel an overwhelming sense of gratitude for the amazing gift you have been given.

2. When you get up and out of bed, take a moment to marvel at the fact that you can even stand up; that you can walk and freely move your body in whatever ways you wish.

3. Revel in a long, hot shower or bubble bath.

4. Call an old friend on the phone you haven't talked to in awhile and spend some time to catch up on each other's lives. If you don't have time for a long chat, call someone simply to tell them you were thinking of them, and that you love them.

5. Hug a child. If you have children of your own, be sure to take a moment out of your day to hold them close, tell them how much they mean to you, and wonder at the tremendous miracle with which you have been so blessed. If you already do this every day, or even several times a day, do it just once more.

6. Plan a romantic dinner with your significant other. Wear your fanciest dress or favorite outfit for the occasion -- if only because it's fun, and you can.

7. Go for a walk. It could be a stroll in a park, along a beach, in a garden, around your backyard, or even just down the driveway to the mailbox. While doing so, take in the beauty of nature that surrounds you -- the brilliant blue sky, the abundance of trees and the sounds of birds chirping in the air.

8. Exercise. People with ME are unable to do so, often even minimally, without severe repercussions because o ur bodies simply don't respond appropriately. So, for the millions of us worldwide with this disease who can't do so themselves -- join a gym, ride a bike, head out for a run, go swimming, climb a mountain or do something you love doing that energizes your body, and feel how amazing that sensation can be.

9. Do something from your bucket list; something you've always wanted to do, but have never done before.

10. Sing a song out loud from beginning to end with full gusto, even if you sound horrible. Be grateful you have a voice.

11. Plan an exotic vacation or go on a road trip.

12. Read a book cover-to-cover, watch a movie marathon or go to a theater/concert to see a professional performance.

13. Do something artistic. Paint, draw, sew, dance, write a poem or create something beautiful with your hands.

14. If you have been putting off a doctor's appointment, don't delay any further. Call to have that routine physical, a mammogram or any other test you know needs done, but that you haven't gotten around to yet.

15. Cook a meal for or plan a night out with friends.

16. Simply go to work and be grateful that you can.

17. Do something kind for someone today. This is something I can still do myself, of course, but not to the degree I would like. So, if you can, go out of your way to help make someone's day extra special. It could be a simple random act of kindness, donating to a charity or something more involved like volunteering at a hospital, church or shelter. It doesn't take much to make someone smile and let them know they matter and that their life has value.

18. Try not to complain about the little things. It can be easy to get caught up in the bustle of everyday activity and lose sight of all the amazing things you have right in front of you.   If you are in good health, are able to get out of bed each morning, go for a walk, go to school or work, engage with friends and family and the people who love you dearly -- these are the things that matter. If you find yourself agitated or annoyed about something today, remember to take a moment to gain perspective and realize just how fortunate you truly are. Soak in all the goodness in your life and appreciate every precious moment. So much can be lost in an instant, and you won't want to have missed a single second.

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 -- 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.
Also, Lily Silver's excellent blog, How to Get On, is an excellent resource for anyone on disability. It covers such topics as Medicaid, Medicare, affordable housing, home-care, medial equipment, etc. You can find the blog at: https://howtogeton.wordpress.com/

"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.