Exciting News!

Thanks to your support, my health is definitely improving!

 

 

QUICK SUMMARY:

 

Even though 2021 was very challenging at times, I can say without a doubt that my health if definitely improving!  Thanks to your support:

 

I can walk farther, and without assistance!  (video below)

 

I can stand without pain for longer periods of time!

 

My severe night-time leg cramps have almost disappeared.

 

My bleeding gums have improved by 75%!

 

Edema/swelling in my feet has improved by 70%!

 

My blood pressure is consistently 10-12 points lower!

 

And my gastroparesis (delayed stomach emptying) is 40% improved!

 

 

IN DEPTH:

2021 wasn't all smooth sailing. I ended up in the ER with another scary retinal hemorrhage; had a short recurrence of c-difficile in September, and it took six months of red tape to get some of the gut and other testing approved and completed. 

And in hindsight, that 18 month long c-difficile infection in 2019-2020 really set me back -- by at least 4 or 5 years. But still...overall, I'm doing much better!

Let's start with the best news first:

I can walk into stores -- or the bank -- without the pain or almost instant worry that I used to feel. And once in side, I can stand for longer periods and then walk back out without my feet killing me!   

I haven't been able to do that in at least 7 years. 

A friend shot some video of me walking outside our building. And it's worth noting that I had to do this about five times because she accidentally kept turning the camera on, when she thought she was turning it off. But I was still able to do it without trouble.

A little slower than I'd like, and I can only do this a couple times a week, but I promise -- next spring...the 20 yard dash! 

 

Plus, once a week, I CAN CLIMB THE STAIRS to the 5th FLOOR and back!  I attribute this to several factors, including a special high-dose methylated form of folate, two different types of vitamin B12, the B vitamin biotin, and a great supplement called d-ribose. D-ribose is a naturally occurring monosaccharide found in the cells and particularly in the mitochondria, and is essential in energy production. It makes a definite difference, and studies show it works for people with ME/CFS. But also very critical to this improvement was something called brain retraining, which I'll talk about below.

 

 

 

 

I've suffered from severe leg cramps (and also 'restless legs syndrome, RLS) off and on for almost 20 years. Calcium helped, but I always had various side effects from calcium supplements. After a LOT of experimentation, I've found that adding powdered non-fat milk to my regular glass of milk, along with small amounts of whole sugar (to replenish glycogen reserves) has helped almost completely solve the issue. A huge, huge relief.

My gums don't bleed as much and my teeth are stronger. This is something I've been dealing with for about 12 years. I just couldn't seem to get any improvement, no matter what I tried. Well, now it happens maybe every 8th or 9th time I brush or floss, and when it does, it's minimal.  

The edema/swelling in my feet -- from venous insufficiency and 'protein calorie malnutrition' -- is better by about 70%. It got really bad last year while I was battling the c-difficile infection, and is still not good overall, but I'm excited it's improved so much in my feet...a good start!

My blood pressure is now lower by about 10-12 points -- sometimes 20 points! I attribute that to being able to eat more foods higher in potassium, plus adding potassium salt to my meals. The goal is to get it down to about 130/75 or so on a consistent basis...and we're getting close!

My digestion continues to improve. The gastroparesis (delayed stomach emptying) is better by about 40%. I can do a lot better though, in all of these areas, which brings me to the...

 

ACTION PLAN FOR 2022:

DIGESTION:

My digestion is better, but still needs a lot of work. The improving edema is a sign that my body is finally starting to utilize protein better, but again, that 18-month c-diff infection set me way back -- so even though I'm walking more, I have a LOT of lost muscle to regain.

Also, I had a gut test done that measured the bacterial diversity of my microbiome, and...well, I flunked. Even after all those different probiotics and prebiotics I took for the c-difficile infection, 8 months later, my overall diversity was 'Low'. This was due in large part to my still considerably restricted diet. I can tolerate more foods, but not enough of the type that help improve bacterial diversity. And improving bacterial diversity will help improve so many things!

Fortunately, I've found a nutritionist who knows a LOT about some of the very specific issues I've been dealing with, having overcome some of them himself. Naturally, I was excited to find him, and with your help, look forward to working with him as soon as possible.

I'm confident the next tests will come back much improved, which should translate to continued improvement not only in my digestion, but my overall health as well.

CHRONIC SINUSITIS:

My Achilles heel is my long-standing, chronic sinus infection. I wake up stuffed, feeling like death, like I mentioned several years ago. I feel "better" later in the day, but it never really goes away. I suspect it's caused mainly by allergies to dust mites or perhaps a fungal infection, etc., but regardless, it needs to be a major focus in the coming year, as no doubt it's contributing to both my fatigue and my gut and digestion issues. Many studies show that infections affect mitochondrial (energy) function.

BRAIN RETRAINING:

If one's been sick for a long time, it's very easy to get stuck in a hypervigilant 'fight or flight' mode, where the brain's limbic system overreacts to any sort of stressor. This can include infections, toxic exposures, injuries and...stress! It can become a vicious cycle, where everything is automatically 'seen' by the brain as a threat, when it may not be.

Over the last several years, increasing numbers of top ME/CFS doctors like Dr. Neil Nathan M.D. are finding that brain or "neural" retraining programs can help patients break that cycle by forming and strengthening new neural pathways that help calm down the brain's overactive limbic system so we can heal and get stronger.

These programs are controversial amongst fellow patients, who feel that any mention of neural retraining suggests that our illness "is all in our heads". Well of course that's not true.

The problem isn't psychological, but rather neurological. In fact, stroke patients use similar methods to rebuild their own neural pathways so they can regain the use of a limb that's been damaged as a result of the stroke.

I mentioned above how my own, crude version of brain retraining has played a role in helping to improve my walking distance. I also have a few friends who have improved using more detailed retraining programs. I'd like to commit to a similar comprehensive program to help accelerate my own recovery. Wouldn't that be great?

 

Once again, thanks to you, the pieces of this puzzle are finally coming together! 

I hope you're as excited about all of this as I am, and invite you to consider donating today, so we can reach our Winter Fundraising Goal and build on these improvements.

 

Your continuing support is critical and so very, very much appreciated!

 

Thank you so much!

  

 

 

p.s. I also did my first painting in sixteen years. A very small one on a card for my sister's birthday. After a couple of tries at some sort of landscape, I realized I'd need a lot more practice. So I loosened up and just attacked it with broad brushstrokes. She loved it.  :)

 

 

 

 

A 'new' car for Essy!

Success!

Thanks to all the wonderful, caring people who donated or shared the Gofundme link, my caregiver and friend Essy has a "new" car she LOVES -- all because of your kindness.

I'll try to post a few photos below, and hopefully a video 'thank you' from Essy, but have been having trouble with formatting. For some strange reason, 'Blogger' wants to put HUGE spaces between the photos at times, despite my protests. We'll see what happens...

As for Uncle Dan, I'm hoping to set up an appointment before the end of the month with the doctor, and will be seeing my regular medicaid doc next month. I'm definitely doing better -- slowly but surely -- and can't wait to tell you more!

THANK YOU ALL SO MUCH FOR YOUR SUPPORT!

Essy...

I know this past year has been a hard one for most of us. It was for me as well, but I’m doing better, thanks in large part to the incredible dedication and kindness of my caregiver, Essy.

 

Essy’s definitely a Can-Do person, and her attitude is rubbing off on me. Her answer to almost any request is a confident “Sure. I can do it.” 

 

Every Wednesday she cooks up nine meals, makes two loaves of pumpkin bread, and often does a load of laundry and changes my bedding. All in three hours, with no complaints.
 

 

She drives me to medical appointments, grocery shopping, and other errands, and is always patient if I ask if we can stop so I can take a photo or two. 

 

When we had that Day of Rain back in January, she called to tell me she was stuck. My cellphone signal was horrible, so I thought she was just running late. What I didn’t realize was her car – along with dozens of others – was indeed stuck because the street had flooded with over a foot of water.

 

Nevertheless, she left her car there and had her brother drive her all the way over here. If I’d known she was literally stuck, I never would’ve expected her to come, but that’s how dedicated and professional she is. 

 

But now she's in trouble and needs our help. 

 

Her car was stolen three years ago and trashed in the process. Ever since then she's been trying to keep in running -- replacing tires multiple times, brakes, etc. Three weeks ago her brake fluid light started beeping, and just last week her low battery light came on. It's clearly on it's last legs and if she loses her car, she could lose her job.

I've set up a 'GoFundMe' fundraiser for her in the hope we can help her so that she can at least find something dependable enough to keep her going for the next several years. 

Here's a link to the fundraiser -- Help Essy Help Others

 

Please donate today to help this amazing woman, and share the link with anyone you know who might be able to help. 

 

Thanks so much!