AFTER A WILD YEAR...

 ...filled with many, many appointments and consultations, we finally have some answers.

And while it's been frustrating that it's taking longer to recover, I've never had this unusual type of iron deficiency before, so it took my doctor and I a long time to figure out why my levels weren't increasing. We're now confident we know why.

I've also never lived in an adult family home before, where sometimes one has to fight for better care. In this case, much better nutrition. But now, with four different medical professionals saying I'm getting only 60% of the protein and calories I need...things are finally looking up.

IN DETAIL:

 

We all know that with many chronic conditions, there are ups and downs. Almost like you're on a rollercoaster. And if you've been following this blog, you'll know that this year started on the Big Dipper.

TESTING, TESTING...

Back in May, I mentioned I was doing better, and that continued for another month or so. But then I started getting weaker again, so my doctor ran some extra tests, and the bloodwork started making sense.

While my hemoglobin and hematocrit rose out of the anemic range -- thanks to a lot of the two different folates and B12 -- my iron was still very low -- 45% below normal. And iron isn't just needed to carry oxygen, it's needed for energy, mitochondrial and immune function, and wound healing.

 

To complicate matters, my plasma iron was low, but my stored iron (ferritin) was still really high. This can be due to chronic infection or inflammation*, but it can also be caused by low copper levels.

So she tested that. And while they weren't officially low, they were really close. She agreed to a trial of copper supplementation, which I started about three months ago. I'm also eating cashews, which contain a high amount of copper. And while I can't get back to the doctor to retest levels until December 10th, I'm confident it's helping.

*My fibrinogen levels -- one of many markers of inflammation -- were elevated as well, so we're going to be retesting that as well.

GETTING BETTER NUTRITION...

 

Another reason for my 'dip' this summer/fall, is because I'm still not getting sufficient calories or protein.

My doctor wrote the owner of the adult home back in May, telling him I should be getting approximately 2,300 calories a day. The owner pushed back, with his now standard argument, telling me they serve the best food, better than any home in the area, etc.

Now while that may be true -- the food may indeed be a lot worse at other homes -- it still didn't address my doctor's concerns.

They did change the menu, and yes, we've definitely had some better meals (typically dinners) from time to time. But still, not nearly enough calories, -- sometimes even less than before -- and almost always, not enough protein. 

 

Like this: A sandwich and a half, made with one thin slice of deli turkey (that could blow away in a gentle breeze!), one slice of Kraft Singles 'cheese' on wheat bread, with a side salad. Probably 250-300 calories, if that.

 

As a result, that infamous ulcer on my foot opened up again, scars started forming, and I ended up back at the wound clinic. The good news is they -- and the nurses that came here to change the dressing twice a week -- also said I needed a lot more protein.

 

Next, my doctor referred me to a Registered Dietician, who has just written a detailed letter to the owner, saying I'm only getting approximately 60% of my caloric needs, along with specific recommended ways to increase the protein in my diet.

 

And lastly, I finally made it to the dentist about 10 days ago. He extracted the first of two teeth that needed pulling, and he also said I needed 2,000 calories a day, just to heal from the extraction*.

 

So, that's four medical professionals who have basically said the same thing. The owner's been gone for the last four-five days, but no doubt will push back again when he gets the news. If he does, my nephew will call him and get the matter settled.

 

The only reason he didn't do it sooner is we both thought it wouldn't be necessary. But it clearly is, and how he has all the ammunition he needs. And thanks to your help, I'm also supplementing with a good protein powder on days when the pickin's are slim.

 

*It's healing well, but I had to drink four 'Boost' nutrition shakes/day, to get those calories.

 

 

ON A LIGHTER NOTE...

 

Back in July, dear friends gave me one of the best gifts I've ever received: A post-card sized pad of watercolor paper, along with a set of paints, brushes, AND a book of stamps, so that I'd have no excuse not to start painting again!

 

It's been wonderful on so many levels. Watercolor painting is very difficult, especially if one hasn't tried it in  15-20 years. So even though I painted that Christmas card a few years back, it was still very stressful, and quite the challenge. 

 

But now, with each little card I've made, I've become a little more confident of my abilities. I know if I screw up, I'm not painting the Mona Lisa, and I can just peel it off and start over.

 

I use the underside of my fleece bedspread as my dropcloth, and although the days are getting really short lately, I do get good natural light in my cubbyhole for a couple hours each day.

 

Below are four of the cards I've made in the last 2-3 months. I hope you enjoy them.

 

 

 

 

 

 

This is a nasturtium that I did for my sister's birthday.

 

This is the abstract version of the nasturtium that I did for my grandnephew.

 

 

And this last is of fall leaves, on a wet road, for my brother-in-law's birthday.

 

I hope to do a slightly larger painting for my nephew's birthday, but not sure if I can get it done in time!

 

 

SUMMING UP...

I was hoping to be out of her by now, but sometimes things take longer than one expects. I do think I'll be able to move by May or June of next year though.

Thank you again for all your love and support. It's been crucial to my improvement since the beginning of the year, when I couldn't stand for more than 2-3 seconds.

As the low-iron situation resolves, and i get more calories and protein on a daily basis, things should improve in a more consistent fashion. 

Wishing you All the Best Thanksgiving Holiday!

Love,

Dan

 

 

 

 

 

 

After a rough start...

QUICK SUMMARY:

 

I started my last post by saying, "Just when you thought things couldn't get much worse, they did."

Well, they did again. Three weeks later I ended up so weak, I couldn't walk, and had to use a wheelchair to get around my apartment. 

A month later I ended up in the hospital for a week, and am now living in an adult group home, which has been very challenging, especially the first month.

 

All of this was due to both the many stresses noted in my previous post, but also undiagnosed anemia, that probably started in May or June of last year.

I'm happy to say though that things are finally improving -- not quite as fast as I'd like -- but they are improving.

And I'm determined to not only recover as much as I did in late 2021-early 2022, but surpass that -- as I never want this to happen again.

IN DEPTH:

 

Many of you know it's been a very rough four-five months for Uncle Dan.

 

In early December, I developed what seemed like "Instant Anemia". I was freezing cold, couldn't catch my breath, and got weaker by the day. 

 

In hindsight however, it probably started at least six-nine months earlier. I can recall times where my hand would shake pouring water out of a pan, or even reaching out to hit the snooze button in the morning. 

 

As noted in my last update, I thought this weakening was due to the many extra stressors I experienced during 2023. No doubt they played a role – especially that stinging ulcer on my foot -- as did my ME/CFS, but underlying all of this, was the anemia.

 

The body has a way of getting one’s attention, and this certainly did. Three weeks after my last update, I was so weak I had to use a wheelchair to get around the apartment, and very soon was losing muscle because I could not stand for more than 2-3 seconds, thanks to that infamous ulcer on my foot.

 

Eventually I ended up in the hospital for a week, and by Feb 6^th, I had to move to a tiny room in adult group home up in Everett because I needed more care.

While I miss my friends in Seattle, it’s nice to be closer to my nephew and his family, as well as my sister Laurie, both of whom have helped me out so much with the move, etc.. 

 

Cozy, isn't it? I love the artwork by my grandnephew on the left, and my sister, on the right.

The first month or so was a very difficult transition. And although things are improving, with two Alzheimer’s patients and only one caregiver for six residents, there are still days -- and especially nights that make it very difficult to rest or sleep at times -- although that is beginning to improve.

Meals are improving too, but still lacking quite a bit when it comes to nutrition, variety and sufficient calories. We have a new caregiver twice a week who’s a great cook, so hopefully she’ll have some influence going forward. 

 

Despite these challenges, ol' Uncle Dan is getting better!

 

The wound or ‘ulcer’ on my foot that plagued me all of 2023 is officially healed. As a result, I can stand for 3-4 minutes or so. That may not sound like much, but it’s a lot better than the 1-2 seconds back in January.

 

Two months ago, leaning on my old walker, I had a PT session where I walked 15 feet. Two weeks later, I walked from the main room to my room and back, which is about 50 feet. And two weeks later I walked, again using a walker, about 200 feet.

 

And while I’m no longer officially anemic, my iron markers are 50% lower than a year ago, so my doc restarted the iron, which should help improve things as well.  

 

And lastly, about a month ago (already!), the owner here dusted off and charged up my ol’ mobility scooter, so I was able to get out to a nearby park my nephew and his family, and my sister. That was wonderful. The absolute best day of the year so far… 

 

I got out again with my sister about 10 days ago, and then just yesterday I was out all by my little old self! I must admit I was pretty nervous at first, but ended up doing okay, so I know it'll be easier next time. So glad the weather is warming up!

In front of the local park, about 3 blocks away. On the left, the local YMCA.

I wish I could turn this around faster, but I lost a lot of muscle from three months in a chair, and I’ll have to really, really pace myself. I still get quite cold at times, which is frustrating, but I see my doctor near the end of the month, so will get some labs done and see what’s up.

 

Still, I’m determined to recover as much, if not more than I did in late 2021-early 2022 when I improved by 65-70!  I've started using the same protocol I did back then, so I'm confident I can improve like I did just 2 1/2 years ago.

 

 

Thanks to you, things are finally looking up. I’m starting to see the beauty in the world around me, which seemed impossible 2-3 months ago.

 

I can’t thank you enough for your concern, support, and love throughout all of this. It helped me so much to remember I’m loved just the way I am, something I’ve had a hard time accepting for decades now.

 

That alone will help lift me up and carry me forward as I continue to improve… 

 

Love,

 

Dan

 

 

 

 

 

 

 

 

 

 

 

Down, but DEFINITELY not out!

 

QUICK SUMMARY

2023 was one of those years where just when you thought things couldn't get much worse -- they did.

Four things set me back quite a bit:

A podiatrist misdiagnosed a small scar on my foot. As a result, it quintupled in size over a five-month period. This created excessive levels of pain, stress and sleepless nights, weakening me considerably in the process.

Then in August, I lost my long-term caregiver. Just when I needed more help, I had one-third of what I was used to. And some weeks none at all.

In mid-October, when things were starting to improve, half of an old tooth broke off and fell out just after I finished dinner. The other half remains in my mouth, making it difficult to eat.

And then two weeks ago, just as I was set to send out this update -- my lower back gave out. I could not bend forward more than a couple inches, couldn't sit for long, and could barely get out of bed or move around the apartment.

 

I was seriously worried I might become bedridden.

IN DEPTH:

 

Starting off on the wrong foot...

 

Shortly after last year's update, I discovered a tiny sore/scab on my left foot, something that can happen as a result of the venous insufficiency that I've had for 8 years now.

In hindsight, had it been treated properly, it would've been a minor issue, would've resolved in a month or two. Instead, the podiatrist I was referred to in March, treated it as they would a diabetic ulcer. He wrapped it, used antimicrobials, and advised me to keep it moist in order for it to heal properly.

The problem is, venous insufficiency is where the valves in the blood vessels of the leg tend to "leak", resulting in too much blood or bleeding in the foot. This the opposite of what happens in diabetes, where the circulation is poor, impairing the healing process.

I didn't find out until I consulted with a vascular surgeon in mid-August, that the correct way of addressing this is to let it air out and scab over -- the opposite of the advice I was given by the podiatrist. As it heals, the body pushes the scab outwards (which it is slowly doing). It eventually falls off when the lower layers of skin have formed a strong collagen matrix.

 

I'll attach some before and after pics below. Please note that the 'rusty' color is due to iron deposits leaking from the blood vessels. Also, some pics were taken at night, others during the day. As you can see, it started out very, very tiny...

 

 

 

So for five+ months, I couldn't walk much at all, so I wasn't able to keep walking to the 5th floor, or any floor. And every single night around 3AM it would sting and burn for about 30-40 minutes until it calmed down.

It soon became clear that all my "energy" was diverted to try to help the ulcer heal. As a result, I lost muscle and became a LOT weaker.

ESSY

 

In the middle of all this, my caregiver Essy took a month off so she could settle her father's estate in Africa But the caregiving agency is very short staffed, so while she was  gone, I was left with only three hours of care a week.

She came back August 1st, but within a month, she was fired. Without going into detail, it turns out she'd been violating company policies, something she'd been warned about earlier.  This left me with no care for several weeks, which made things even worse.

So at a time when I needed more help, I had a lot less. I was needing to stand a lot more, on feet that were a lot weaker, raising stress levels and draining my energy even more.

I finally got a new caregiver. She's nice, and tries hard, but refuses to do any personal care (for religious reasons), and there are things she's just not good at. At least not yet. But with the shortage of caregivers since Covid, I'm grateful I have someone who comes twice a week.

It made a difference. Very slowly, I started feeling a little stronger, so that I was gradually able to walk up the stairs to the 5th floor once a week in September, then started doing so twice a week in October -- after not being able to do so since March.

Finally, things were looking up. Until one night after dinner...

KLUNK.

...an old tooth broke off into two pieces, landing on the counter. While I'm so glad it didn't break off in the middle of the night, it was still very stressful. Half of it's still in my mouth, with a sharp edge that rubs against my tongue. I had to buy a food processor to grind up all my meals, and although it's calmed down a bit, I'll no doubt have to have it -- along with another tooth on the opposite side -- pulled and replaced.

And then just when I thought it couldn't get any worse...

Two weeks ago my back gave out. Seized up so bad that I could not even bend to reach the second shelf in my refrigerator, let alone change clothes, etc.. I couldn't take my socks off for six days.

Fortunately, it's about 75% better thanks to the kindness of a chiropractor who came to my apartment to do a gentle adjustment. (I tend to avoid chiros, but had a great experience with one when my back went out in 2004.)

 

Which brings us to...

 

 

 

2024's PLAN OF ACTION:

 

First, I'm restarting the protocol by Dr. Russell-Jones that helped me improve so much in late 2021- early 2022. I need to stabilize and get stronger before contacting a good dentist to help address the broken tooth. The protocol utilizes special high-dose methylated forms of folate and B12, along with riboflavin and some key trace minerals to support DNA repair and mitochondrial function.

 

Secondly, a friend of a friend recommended a naturopath she says is great at sorting out complex issues like mine. And he also actually makes house calls! 

 

This would be so helpful as he could assess me in my environment, and thus -- just as one example -- help figure out why my sinuses are so clogged when I wake up in the morning. He could also see the building, the stairs I was climbind -- to help with pacing as I begin to increase my walking again. 

 

I really, really need to expand my diet as well -- big time -- but haven't been very successful, so I'd like to get his opinions and feedback on how to proceed. I could also get his opinions on whether or not "this" supplement is really necessary, or "that" probiotic is harmful.

One issue that has not been resolved is my hypothyroidism. My TSH number is 'normal', but I'm still a lot colder than I should be, and my skin is still way too dry. Fixing this should help my digestion, my immune function, and most importantly, my wound healing.

I also need to have a new Organic Acids Test run. This is one of the tests that helps measure in detail how one's metabolic functions are improving or getting worse. It's THE test that basically saved my life when a second doc reviewed it in late 2020, and noticed the marker for c-difficile was "a little high" -- helping me end that 19-month c-diff infection in August 2020.

 

Then in about six months, I should get a new Nirvana Biome test, to see if my gut's microbial diversity is improving. It was terrible when tested in 2021. I meant to do it earlier this year, but was quickly distracted by the foot issue.

 

And lastly, I'll need to find a good, experienced dentist that can help pull this tooth, and fix another one on the opposite side of my mouth. But as mentioned, I'm hoping I can stabilize and get stronger before seeing one, say in 3-4 months. By that time, my foot ulcer should be healed, if not sooner (I hope!). I'm also hoping I can f ind one who will offer a discount, as we all know that good dental work is..."uncheap".

 

 

Six or seven years ago, these challenges may have made me just give up. But with all I've been through and learned in the process, I'm more committed and determined than ever to fight back than ever before.

And with your amazing, ongoing support and encouragement, I know I can do it!

 

Please consider making a donation today so I can get the help I need to turn this around and surpass the progress I experienced two years ago! 

 

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

Two More Improvements, and one of them is HUGE...

QUICK SUMMARY:

 

In just two weeks since the last update, I've lost at least 1/4in around my middle. I know that sounds trivial, but after losing 2 inches a year ago, then stalling for the last 10 months, I'll take the improvement and go from there.

 

But more importantly, I have some big news about a problem I've been struggling with for over 11 years now, which relates to my digestion, my absorption of nutrients, and my muscle loss.

 

If this improvement continues, I'll know I'm finally on the road to real, lasting recovery.

 

 

IN DEPTH:

I foolishly used to think that all one had to do to lose weight was to just eat less. And perhaps exercise more. That is, until I started gaining a lot of weight around my middle, even though I wasn't getting anywhere near enough calories!

 

That started about 8 years ago. My waistline grew while I remained bone-thin everywhere else. In fact, I gained the most visceral (belly) fat during the 19 months I had that c-difficile infection in 2019-2020. It grew to 43 1/4 inches, so bad that my abdominal muscles actually started to separate, putting me at risk for a hernia.

Then about a year ago I finally started losing this stuborn fat. I lost 2 1/4 inches, and then it just came to a stop. Perhaps I've figure out what was helpng and what wasn't, but I can say with confidence that I'm touching 41 inches again, and am committed to make sure this continues. I'd be ecstatic if I could get down to even 38 inches!

The 2nd area of improvement is HUGE.

I don't think I've ever talked about this on the blog, because it's both weird, and disturbing -- but I haven't been able to take showers for almost 10 years now. It's not the showers that are tiring, it's the drying off afterwards.

Sometime in 2011, I noticed that my skin would shed or peel when I dried off after a bath or shower. Neither I or my doctors could figure it out.

 

from 2019

 

My skin would even peel off in microscopic amounts all day long, building up on drinking glasses, on my computer mouse, etc.. Bizarre, right? Here's a pic of my mouse, from 2017, after two or three days buildup.

But anyway, after a shower, I'd start drying off, and as I rubbed myself with a towel, the damp skin would just peel or shed off -- like a snake! Sometimes it would be quite bad and would wipe me out for a day or so.

So I started doing spit baths instead. Legs one day, then arms, and with help, my back. The skin would still peel off, but it wasn't quite so draining. Over time, this became the new normal.

Until last Friday.

I asked Essy to help wash my back. She gave it a good scrub for 10 minutes, along with my neck and arms. I always check by rubbing the skin with my hand -- and it didn't seem to be peeling off as much.

Essy confirmed this. Said it was much better, by maybe 75%! We always have to lay down a few towels to catch the skin, and sure enough, there wasn't nearly as much desquamation as usual! 

 

From 2019: This towel would be covered with skin, but it only shows along the top edge, because there was another towel laying on top of this one.

 

And from this past Friday. The whole towel should be covered, but it isn't.

Then washed my legs on Wednesday night and got the same results -- not anywhere near as much shedding!

THIS IS HUGE. It means I'm finally starting to digest, absorb and utilize protein better than I have in eleven years! Which means I'm not only losing less muscle, but should finally be able to regain much of what I lost, which means I should be able to increase my strength, my standing and walking time, etc.!  I can still hardly believe it, but I'll take it for sure!

Friends, I couldn't have gotten this far without your help. And we've already almost reached the halfway mark for the Winter Fundraising Goal!

Thank you again for your support, and my Very Best Wishes for a Wonderful Holiday Season!

Dan

 

Life Begins at...65?

QUICK SUMMARY:

 

After the severe setback earlier this summer, I was able to get back to about 75% of last year's improvement level -- that is until I was hit by a brutal sinus infection and stomach flu a week ago. Surprisingly, it just may help provide answers going forward.

As a result, I'm more determined than ever to take on this beast once and for all. I got close a year ago, and am confident I can far surpass that this year.

IN DEPTH:

 

The Improvements so far...

 

After the May-August setback, I went from hiking to the 5th floor twice in August, to six times in September and October -- which is actually more than this time a year ago -- and then five times this month.

 

from September 2022...

 

Since I used to run up the stairs when I was taking care of mom, I decided to try to start doing that again too -- but of course a lot slower and very carefully at first. I started early this month and have done it twice so far. Essy shot a video of the 2nd attempt.

Yes, it's slower, and only one flight, but it's a start.

Restarting specific supplements helped improve strength and mood, and also going to the old (low) dose of klonopin helped me settle down as well. I started a much tinier taper about a month ago and it's going okay.

My blood pressure continues to improve. It's consistently 130/75, instead of 149/88 or higher.

I do have some twitching in my feet and legs from time to time. That should improve as I get more calories. And I think I've had maybe ONE leg cramp since August, which is a new record!

 

 

LAST WEEK'S SETBACK...

and it's possible clues towards future improvements:

 

This recent sinus infection was a total surprise! As noted a few years ago, ME/CFS patients rarely get 'real, normal' fevers like healthy people do, and they rarely last more than a couple days before dropping again.

 

Well, mine shot up to almost 104 on day three, and lasted for five days -- the longest and highest fever I've had for 30 years. Perhaps it's a sign my immune system is beginning to work normally?

 

Things got a lot worse as it turned into the stomach flu. My doc's office was closed, so I ended up pulling out a bottle of an herbal anti-parasitical so I could at least stop the diarrhea.

 

It worked. Really well. Helped improve my non-existent appetite. And interestingly, it even cleared my sinuses by 80%.

 

 

So, what's THE PLAN FOR 2023?

 

1. Investigate the possible parasite factor.

 

I haven't had the time or energy yet to find an expert to consult with on this, but it's too intriguing to just ignore. Especially since it's helped my sinuses so much, which was #1 on last year's list.

 

2. Improve Digestion.

 

I mentioned working with an expert last year. I contacted him in March, but the setback hit me so hard, that we ended up putting it on the back burner. With your help, I hope to work with him very soon. 

 

3. Improve the diversity of my gut microbiome.

 

Below is a screenshot of my microbiome test done last year. The two main phylum in a health human are the Bacteroidetes and Firmicutes. Firmicutes (in orange) are associated with obesity while Bacteroidetes are connected to leanness.

 

 

As you can see, I have almost twice as much Firmicutes as I should. No wonder I've had such a difficult time getting rid of this fatty liver and visceral fat!  There are other factors too -- stress will mess up this ratio and deplete the microbiome in general -- but slowly changing the diet and adding very specific prebiotic fibers to improve the ratio will also be key.

 

There are other problems with the gut test I won't bore you with, but I hope to work with Dr. Jason Hawrelak -- one of the world's experts -- apply his advice, and then repeat the test next June. 

4. Brain Retraining

 

Lastly, although I made some progress, I need to get a lot more serious about brain-retraining. Anyone who's around me for long will tell you I worry too much. It's an automatic thing, perhaps due to being sick for so long, but...maybe it started earlier? Regardless, ingrained, subconscious patterns like that increase stress hormones which interfere with healing. 

 

I did consult with a practitioner for four sessions from March to April. And while the sessions went well, he seemed a little inexperienced, so we didn't make much progress. We also had wifi connection issues.

 

With your support, I hope to work with a more experienced practitioner this year.

 

 

IN SUMMARY...

 

My commitment to recovery/remission has never been higher.    I could say it's because I'm so sick of being sick. And I am. But this year -- in fact today -- all of a sudden I'm entering my 'Golden Years'! 

 

I even have an appointment with my doctor tonight. 

 

So I think the setback earlier this year, along with this recent severe infection, combined with my 'Medicare Birthday', all add up to one thing...

 

Once and for all, it's time to get well Dan, and that starts today. 

 

Remember? We got so close last year. 

 

Please consider donating today so I can surpass last year's gains and see more progress than ever before!

 

Remember, 100% of your donation goes to pay for medical appointments, tests, treatments, drugs and supplements not covered by insurance. They are paid out by a Trustee and by law, cannot be used for any other purpose. 

 

You can donate today to the “Daniel J. Becks Special Needs Trust” by clicking on the PayPal “Donate” button on the top right corner of the blog.  They accept Visa, Mastercard, and American Express, without any need to sign up with Paypal.  Or if you prefer, you can make a donation at any Bank of America branch (please bring the account number (#35137298) with you). Any amount you can give will be greatly appreciated!

 

Stay safe and take care friends. 

Thank you so much!

Twilight from the roof -- early October 2022.