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