The Storm before the Calm...

I have to say it's been a really rough 2-3 weeks. 

I'd developed some bizarre eye symptoms back in early October -- sudden arc-like flashes (both dark and light) at the very top of my vision which my medicaid doctor thought might be the beginning of something called 'vitreous detachment'. The vitreous fluid is a gel-like substance inside one's eye.

While this detachment can be a normal sign of aging, it can also become very dangerous if larger floaters and black spots suddenly appear, which happened the day before my birthday, and got worse during a birthday party 2 days later. When this happens it can mean that the vitreous is pulling on the retina and cause a retinal detachment, where the worst case scenario could mean partial blindness.

So I got in a few days later, and sure enough they found a retinal tear. Got me into laser surgery to kind of seal it off right away. That was extremely uncomfortable, esp as the doc was trying to get me to 'Look left, look left, LOOK LEFT!'. I mean, if I could look any further to the left I'd be a chameleon. Plus, it took a LOT of energy to do this and well, it just wiped me out.

A week later I went back in for the followup. Naturally I was scared to death I'd need to undergo more treatment (the floaters are still there, but hadn't spread). 

After some poking & prodding, doc says the left eye is "doing good. You even having some scar tissue starting to form." That was a relief. Just had to wait for my shuttle taxi ride home, which I was told would arrive in about 20-30 minutes.

What started out as a pleasant wait, turned into a not-so-pleasant two HOURS. So what to do? What else, except wait in the lobby and watch the people 'Walk on By'.

After leaving at 1:30 for the appointment, I finally got home at around 7pm. Only to realize about a half an hour later that I left the umbrella I bought the day before, in the cab.  You know how that song goes..."It's That Time of Year..."  

The storm continues, but there are definite silver linings. It's been really rough -- could hardly walk just a few feet during the last 2 days -- but I've learned new things from this storm, which will help me get well.

In the meantime, as I count the days to my first consult with the new doctor on January 3rd, I thank you for taking the time out of your busy day to read this post, and wish you all the best during the holiday season.

On this Thanksgiving Day...

When I was a kid, Thanksgiving was my favorite holiday. But not for the right reasons. 

It was my favorite because of all of the food -- the turkey, mashed potatoes and gravy, the stuffing, yams, and of course, pumpkin pie.

Was I thinking about the things I should be grateful for?  Well, perhaps for a minute or two, but mainly it was all about the food, the family, and maybe the games after we woke up from our brief trypto-naps from all that food.

 

And I must admit that after I got sick, it was difficult to feel grateful for too much, especially after I became housebound. I missed so many family get-togethers that one holiday blurred with the next, and every day was just another day.

But, there's a silver lining in every cloud, for if I hadn't become so ill, I probably wouldn't have realized how much I do have to be thankful for.

I'm thankful to friends and family over the years who helped me pay my rent when I ran out of money before I was approved for SSI; for the friend who helped drive me down here so I could apply for the low-income apartment I've now lived in for the last 5 1/2 years; for the new friends I've met here who helped me when I became housebound in 2014 and continue to help in so many ways. I'm grateful to my ME/CFS friends who were there for me when I thought I wouldn't make it.

I'm especially grateful to a handful of friends/family who have stuck by me with friendship and support throughout my illness. You know who you are. 😇

And now this year... 

 

I'm so very, very grateful to all of you who have helped me raise enough funds so I can finally start to see the doctor who helped slow down my decline back in 2016.

That's right -- thanks to your compassion and generosity, I now have an appointment with Dr. R. on January 3rd, 2019! 

Thank you. I'm alive today because of you.

I hope you have the Best Possible Thanksgiving.
May you be filled with Gratitude on this special day!

The Importance of Clean Air...

Study after study has shown that clean air -- both outside and inside -- is a critical factor in good health. 

I often post photos on Facebook of the beautiful scenery right outside my living room window. The trees, birds, and beautiful cloud formations. 

And yes, it's a beautiful view, one of the things I really like about my apartment.

But what I don't usually show is the fact that there's a major four-lane thoroughfare about 100 feet from my apartment and a major highway about four blocks east.

Air pollution: Altered immune function, impaired cognitive function, and mitochondrial dysfunction.

Of course some folks may not be affected by this pollution, but many can be, considering that many studies have shown how pollution can alter immune function. This is even more important if one has ME/CFS, which studies have found is characterized by an imbalanced or dysfunctional immune system. 

Traffic-related air pollution has also been implicated in impaired cognitive function in several studies;  here, here, here, and here. My ability to concentrate has definitely worsened in the last 4-5 years.

As noted elsewhere on this blog, the leading hypothesis from recent studies is that mitochondrial function is impaired in ME/CFS, resulting in problems with energy production in every cell of the body.

Pollution also damages the mitochondria and impacts mitochondrial function. There are quite a few studies backing this up, but here is one, and another.

A picture's worth a thousand words...

Back in 2014 I bought a cheap air ionizer. I wasn't sure if it was helping, but it did make the air close to it smell very clean, like the outdoors. I didn't realize the air coming in my apartment was so dirty until one day when I happened to brush up against a cloth wall hanging that was directly behind it.

As they say, a picture's worth a thousand words. Here's two...

I knew this area had higher levels of pollution, but still, I was stunned. Perhaps I shouldn't have been, considering how dirty the windows and window screens get after only a few months. Note the paper towel is that black from only one wipe of the window screen.





A year later I was given a medical-grade air purifier as a gift. I didn't realize how effective it was until I sold it about 2 years ago to help pay bills. I wasn't sure if it was helping. Now I know it was, as in hindsight, my sinuses have been really bad ever since.

(A 2003 study by Alexander C. Chester, M.D., clinical professor of medicine at Georgetown University Medical Center, found that "Sinus symptoms were nine times more common on average in patients with unexplained chronic fatigue than the control group.")

Of course I can't control the air quality outside, and can only clean it so much inside. 
But the unit I had -- the Austin Air Healthmate Jr. --  is a medical-grade unit that helps to remove a wide variety of particles, sub-micron particles, chemicals, gases, micro-organisms and odors -- including dust (which is also a real problem here thanks to wall to wall carpeting), mold, pollen, tobacco smoke, chemical vapors, viruses and bacteria.

Removing or reducing these compounds will help me tackle this chronic low-grade sinus infection and in doing so may even improve my overall ME/CFS at the same time! It should also help reduce my cognitive dysfunction ('brain fog') that has definitely worsened over the last 4-5 years.

Note: If you'd like to have your donation applied towards this air purifier, please let me know by filling out the 'Contact Form' on lower right-hand side of the blog.

Thank you!

I'd kill for the flu...

Well, not kill.
  
I know this will sound bizarre -- and while I wouldn't wish it on anyone else -- I really wish I could get the flu. 

I haven't had it since I came down with ME/CFS nearly 20 years ago. And if you ask other patients, the overwhelming majority haven't either.

Why in the world would anyone want to get the flu and feel even achier and uncomfortable, with the high fever that goes along with it?

 
Because we never get that a 'real' fever. 

A real fever that indicates a normal immune response.  

We never get a prolonged high fever that helps eradicate or "burn off" something like a flu virus. Or a even a cold virus, or bacterial or fungal infection.

Instead, our body temps tend to run about a degree lower, and we get 'flu-like' reactions, with maybe tender or swollen lymph glands, and perhaps even a brief strong fever -- but it never lasts for more than a day or two.  

Thus various infections are never fully dealt with and instead of being sick for 2-3 weeks, we're sick for 2-3 years, or sometimes even 2-3 decades.  So if we ever got the actual flu, as odd as it sounds, it would be a cause of celebration, as it would show our bodies are mounting a normal immune response!

As I look forward to consulting with Dr. R., I've been making a list of topics to discuss with him, and this 'immune dysfunction' that comes with ME/CFS is at the top of the list.

The worst advice...

Like many other patients, I've received some terrible advice over the years.

In hindsight, I can kind of understand why, especially early on -- as I'd have good days and then bad days. Days where I'd appear completely normal, followed by days, even months of severe weakness and pain.

I wasn't quite sure what was happening myself, and because I was still working and needed to appear as professional as possible, I'd often hide that pain and weakness behind a smiley facade. So I guess I can kind of understand how some might think I wasn't really sick.

But others knew better, because eventually I had to tell them why I couldn't do 'this' or 'that'. Even after I ended up in the ER and had been sick for years, my two bosses were particularly clueless and/or mean-spirited.  One would actually laugh in my face when I tried to describe how difficult things were becoming.

So what was their brilliant advice?  Swimming.

Yup, I just needed to exercise more. After all, it had helped my boss's depression when his antidepressant stopped working. That, and a month-long vacation in Malaysia.

Yet not only do ordinary people believe this, but doctors do as well, with often tragic consequences.  Especially in the UK, where such ignorance (based on the flawed 'PACE' study) and lack of treatment options under the National Health Service has actually led to the death of many patients. 

But seriously, exercise?  Simple, common sense would suggest that if one has trouble walking, or even standing, that the last thing that would help, would be more exercise. And really, if a simple exercise program was the cure, NO ONE WOULD BE SICK.

End of rant. 

Fortunately, a whole slew of recent studies has shown actual biological abnormalities in patients with ME/CFS.  Here's a concise recap of the studies by Rochelle Josyln. 

A Magic Pill for ME/CFS?

Isn't there a drug or drugs for ME/CFS?

Unfortunately, there's currently no magic pill for this devastating illness. I wish there was!

But with the exception of some specific antibiotics, antifungals or antivirals, for the most part, drugs have not been the answer for patients withe ME/CFS. 

Thanks to a recent groundbreaking study, we now know why -- a great many of them interfere with mitochondrial (cellular energy) function, which is the last thing we need.

According to the study's lead author, Robert Naviaux:

"Many antibiotics like tetracyclines, erythromycin, and the fluoroquinolones (eg, Cipro), and antivirals like acyclovir, fialuridine, AZT, and ddC also inhibit mitochondrial functions when used chronically (usually for more than about 3 weeks). Chronic use of these drugs can do more harm than good if there is no longer good evidence for an active infection. When mitochondrial functions are critically impacted by long-term use of certain antibiotics, a ripple effect in metabolism and gene expression is produced that can further impair energy production by mitochondria, converting an active cell danger response that occurs during active infection to a hypometabolic survival response."

Now maybe someday there will be a 'magic pill' -- there's certainly a lot of great research going on lately* -- but I'm not holding my breath. I can't afford to. If something should show real promise, it will still require several clinical trials and thus probably take at least 10 years to get approved by the FDA. 

Instead, I need to follow the path that others I know have used and are using, and that's an integrative approach, working along with the doctor who helped stop my decline. 

*Above, the team of scientists from all around the world, brought together this past August by the great Ron Davis at the Open Medicine Foundation’s Community Symposium on the Molecular Basis of ME/CFS. 

Goals for the New Year...

I've set the following goals for 2018. 

Stop my muscle loss completely, and start actually gaining muscle, so I can...

   • Ditch the wheelchair! Except perhaps for really long distances.
   • Go grocery shopping without using a mobility scooter.
   • Take a shower at least twice a week, without paying the price. 

End my stubborn, years-long chronic sinus infection, with the ultimate goal of improving, even restoring my overall immune function.

Improve my terrible digestion/gut function so I can expand my limited diet and eventually eat whatever I'd like, without the need for digestive supplements that I've taken for years.

All with the ultimate goal of returning to work.

Your one-time gift will help ensure the consistent care needed so that I can achieve these goals. Please click here for details!