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.

Treatments - A Long List

If at first you don't succeed, try, try again. Then quit. There's no point in being a damn fool about it. -- W.C. Fields

I had to laugh a bit when I first heard this quote. Thinking back on all the hundreds of treatments I have tried and often continuously repeated despite their ineffectiveness (and, at times, counter-effectiveness), I sometimes have to wonder about myself. What was I thinking?

But there is such a desperation and overwhelming desire to get well that one will often try anything (and keep at anything) in the undying hope of it suddenly working.

After I became bedbound, I received a variety of nutritional IV's at home twice weekly (sometimes daily) for about 4 years.... despite the fact that they often made me feel worse. My doctor at the time (she is no longer my doctor) told me that the ill effects were a result of detoxification, and that I had to suffer through it in order to get well. The biggest mistake patients made, she told me, was giving up too early. I wanted to believe her so badly that I continued with the treatments for years, hoping that, contrary to the evidence and my own intuition, I was doing something which ultimately would benefit me. In truth, I was also a bit limited in my choice of doctors. I could find no other MD at the time to come to my house to see me and thus felt I had little alternative but to listen to this doctor's orders.

In the end, it turned out I should have listened to my intuition. My reaction to the IV's was not detox; it was my body's inability to tolerate the treatments. After watching a lecture by Dr. Paul Cheney, a renowned ME/CFS expert, I learned that high dose vitamin C and glutathione IVs can actually have a detrimental physiological effect in some patients with ME/CFS. Not surprised by these findings, and upon further research, I finally stopped the IVs.

The pathology of ME/CFS is complicated and every patient reacts differently to different therapies. I obviously don't want to deter anyone who may be receiving a similar treatment and responding well to it. I just wanted to make the point that I am not one to give up on something very easily.

Though I'm doubtful to ever go down such a road again, I always give any treatment a full-fledged try, often for at least a year or longer. As with anything in life, I've consistently wanted to make sure I gave it my all.

I've received a lot of emails asking me if I've tried a variety of therapies for ME/CFS, and I've therefore decided to do a quick run down of some of the many things I have indeed attempted in my hopes to get well. Please note that this is a very incomplete list and is meant only as a general summary. I have been sick for over 13 years, and to list all the things I've tried in that time would be too enormous a task. So this is just a little overview. Exciting reading, I know, but here goes ... :)

Prescriptions
A growing list of antibiotics (Erythromycin, Cipro, Zithro, Doxy, IM Penicillin, IM Rocephin, etc.), anti-virals (Acyclovir, Valcyte, Valtrex, etc.), anti-fungal (Diflucan), anti-anxiety/anti-depressants (purely to appease doctors; too many to name), anti-malarial (Mepron), anti-coagulant (Heparin), stimulants (Ritalin, etc.), thyroid/hormone replacement (including estrogen, progesterone, testosterone and hydrocortisone), B12 shots (both hydroxy and methyl), hepapressin, immune modulators (Isoprinosine), Florinef, immune enhancers (immunoglobulins) and the like.

Alternative Therapies
Acupuncture, massage therapy, shiatsu, jin shin jyutsu, energy healers, herbalists/herbs, EAV/Asyra and electro dermal testing, live blood analysis, visualization, cognitive behavioral therapy, stress reduction/management, magnetic therapy, affirmations/positive thinking, light GET/yoga and gentle lifting in bed with 1 lb ankle/wrist weights (caused huge setback), hypnotherapy, reflexololgy, reiki, detoxification, meditation, medical intuition, muscle testing, distance healing, prayer, homeopathy, herbs, colonic (ugh!), 4+ years of IV therapy (including Vitamin C, nutritional IV’s, amino acids, glutathione, H202 and saline), oral chelation and a list of supplements far too numerous to name.

Nutritional Therapies
As noted above, I received a multitude of nutritional IV’s twice weekly (sometimes daily) over several years. Almost all of them made me worse. I’ve also tried a growing list of nutritional supplements that likely exceeds well over 300 items. These include but are not limited to vitamins, minerals, enzymes, amino acids, antioxidants, herbs, probiotics, energy/nutritional/green drinks, Gookinaid, juicing, whey protein, transfer factor, colloidal silver, cell food, chlorella, mitochondrial supplements, mushrooms, immune enhancers/modulators, NT factor, adrenal glandulars and the like, NADH, D-Ribose, and so on.

Diets
Elimination diet (no gluten, sugar, dairy, wheat, etc), low carb diet, high protein diet, low protein diet, paleo diet, raw food diet, vegetarian, vegan, low sulfur, anti-candida, and a highly specific food allergy elimination, etc.

Protocols
There are several different ME/CFS and Lyme treatment protocols out there, based on a variety of different theories, or on different aspects of this complicated and multi-systemic disease. Some of the protocols I have attempted include the Yasko protocol, the simplified methylation protocol, the Patricia Kane protocol, the Dr. Zhang protocol, Dr. Gupta's protocol (amygdala retraining), the Myhill protocol (less a sauna), Dr. Martin Pall’s protocol, Cheney’s protocol (prior to his recent change to CSF’s and stem cell replacement), KPU protocol, and several other protocols I’m sure I am forgetting.

Regarding the Marshall Protocol, I had the proper testing done and it was determined (via a conversation between my doctor and Dr. Marshall himself) that I would not be a good candidate.

Doctors I've Seen
As for the various types of doctors I've seen over the years, they include about 5 internists, 3 infectious disease MD's, a neurologist, a rheumatologist, an endocrinologist, 2 dermatologists (for hair loss), an allergist, several naturopaths, a world renowned integrative medicine MD, 3 acupuncturists, 2 herbalists, 2 nutritionists, a psychotherapist specializing in chronic illness, a cognitive behaviorist, and multiple alternative health practitioners.

Whew! So, there you have my partial list. Though few of the treatments have really helped me, I suddenly feel like I've been very busy all these years. :)

As for my current regimen, it includes a healthy diet, meditation, an antiviral, medications to help with sleep, natural thyroid, Equilibrant, Hydroxy B12 shots, the KPU protocol, light stretching in bed, and about 20 different supplements. I am also attempting LDN (low dose Naltrexone) and a nutritional immune modulating powder called Avemar.

Here's hoping that new and better treatments are around the corner for us all. If nothing else, there's no doubt we will all still continue to try, try again...