Posted by: Denise on: June 19, 2020
I’ve been working on CLLAlternatives since November 2010, and I thought it was time for an updated look! The man you see picture with me is my husband, Peter. I’m sure I’ve mentioned him here and there. But I should mention him a lot. He has been my partner in wellness since I was diagnosed in 2001. He wakes up early to set up our home made chicken soup, sauerkraut, dehydrated kale chips (yum!) and more. Whatever diet restrictions I’ve had over the years (and they have been compounding lately), he sticks to it with me, at least during meals. Let’s just say I really appreciate everything he does. For some weird reason, it seems he wants to keep me alive.
The picture you see was taken by a volunteer at the Marietta Museum of Art and Whimsy, in Sarasota, which I highly recommend if you enjoy smiling. We visited last December. It is, of course, closed at this time because of the pandemic. But this, too, will pass. If you find yourself on the gulf coast, try to make time to go there!
In addition to the site, I’d like to update you on my health. I generally have blood tests every three months. Because of the COVID-19 pandemic, I delayed until just last week for seven full months. While I kept to my diet and supplements, I have to say i was just a little nervous about the results. Fortunately, they weren’t so bad. While I’d always be thrilled to find out that I’ve finally reached full remission (smiley face here), I was pleased to see that I’m still bobbing along in my low 20s WBC. I would prefer the mid-teens, but after all the stress and worry of the pandemic (which is still ongoing!)I think I’m doing okay.
I did put on a few pounds while working from home, despite all efforts. It’s just too easy to migrate over to the kitchen when you’re getting up from the computer. I did manage to take them off with a concentrated effort to STOP EATING sunflower seed butter and rice cakes. Also to cut down on the amount of nuts and fruit that I eat. Yes, you can gain weight eating healthy food. I just proved it! : )
As always, I will TRY to post more often. I hope this format makes it more clear when it was the last time that I posted. A recent and new reader emailed me to ask if I was still walking the planet because she thought I hadn’t posted for a year or so. The last post was March 2020. So while no one is going to accuse me of posting too often, I do try to check in now and then. I did promise a book, but… all the Google and Amazon and Facebook censorship of all things natural health has been really discouraging. I don’t know if you are aware of the NY Times author whose COVID-19 book was taken off Amazon because it wasn’t conventional enough for the Amazon censors. To be fair, it’s up there now, but only because this author has clout. He’s a best seller. Go ahead and buy his book, just to show Amazon what’s what!
Please write and let me know what you think of the new format. Please forgive me for the lack of a book. (I have written a LOT so far, but compiling it all into a book, not so much just yet.) Please let me know if there is a topic of interest that I can post on this site. We have a much better chance of that happening.
I hope this post finds you hanging in there and doing well. I really care about each and every one of you. We are unfortunately bound in a sense of understanding each other because of this CLL thing we’re all dealing with. I wish you good health. I wish you happiness. I wish you peace. – Denise
2 | Nathalie
July 22, 2020 at 8:29 am
Hi Denise,
Thanks for writing! As usual there’s always some good insight that I pickup from your blog. Low 20 WBC is great and I’m with you; wish it could just get to the normal range. Glad you’re well and enjoying life. I’m doing well…stable.
Yes, this pandemic is life altering but we will get through it. I will check that book out on Amazon and it’s one of the ways we speak up also as I see some awful books are flying off the shelves too…scary!
Thank you for the post!
PS- the recent posts section makes it easy to follow the timeline so good idea.
Stay well,
Nathalie
Denise
July 30, 2020 at 3:08 pm
Hi Nathalie,
I’m so sorry this just showed up on the site. I thought you were a regular and so your comments were instantly posted live. Actually, the site redo didn’t work, and it looks pretty similar to how it looked before. I really wanted to update to a format that looked sleeker. But you have to be more of a techie that I am, apparently, to make that happen. So the site remains as is until I can figure out how to fix it. I’m glad it’s easier to follow the timeline. I hope that you continue to be well. I wish we could all be so over this pandemic! We have to be patient. And patience is difficult!!!
Thanks for writing. All best, Denise
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1 | Mike
July 30, 2020 at 11:57 am
Hi Denise, good to see your post. I’m glad you are doing well and that Peter is taking such good care of you. I’ll share my current situation hoping that it may help others – I had been getting my blood work done every 3 months but the doc had pushed back to 6 months because I was doing well. When I had blood work done this week my WBC has gone from 31 to 38 (which isn’t too bad) but, about once a week over the last five weeks I’ve been getting an episode of fatigue that lasts about 30 minutes – It feels like the blood is being drained out of me and I can barely function. I have been consistently drinking bone broth 4-5 times a week for a couple of years but over the last several months I tapered back to 1-2 times a week. The doc wants me to come back in September to get another blood work up and is strongly hinting at treatment to bring my WBC down. I’m not interested in that! What I’m going to do is drink bone broth daily to see if these episodes of fatigue diminish. If so, that might make an argument that bone broth made the difference. I’ll update you in September so that others might benefit from this little experiment as well.
Thanks for all you do! Mike
Denise
July 30, 2020 at 3:27 pm
Hi Mike,
I’m sorry you’re dealing with a bump in the road. I’m not sure it’s as bad as you think. For one thing, my CLL doc (years ago) told me that he doesn’t think of treatment for the WBC alone until it’s up to 100 and has been doubling in a three-month period. So it doesn’t seem that you fit this criteria.
About your fatigue, which is really the issue…Does it have anything to do with the heat? I get worn down on hot days, especially if I’m out in the sunshine. I have to shower and slide into bed. Could it be you’re missing a supplement. I find that when I’m not taking 200 Ubiquinol (the best form of coQ 10, I start to feel really run down. Also, there is the matter of a lack of sleep. Yesterday I had to get into work by 830AM (a challenge for me) and I had insomnia as of 400AM. It was a stressful day full of meetings (remote). I was dragging yesterday and was barely able to function after dinner. What I’m getting at, is your fatigue possibly situational? Something you can work on in addition to the bone broth soup?
Please don’t assume that your doctor is gearing you up for treatment. Think of all the other reasons that a healthy you might have for having really bad fatigue now and then. Everything that goes wrong is not necessarily about CLL! Personally speaking, it took me a few years to get this through my head. As my psychologist told me years ago, “Don’t catastrophize.” (Yes, I think it’s actually a word for worrying about the worst possible outcome.) Try to assume that you are really a well and healthy person, and see if you can figure it out. My WBC was as high as 47 at one point, and there was no talk at that time about treatment.
And yes, please get in touch in September (or sooner) and let me know how you’re doing!
All best, Denise
PS Also, look into getting Peak Immune. I recently found an article saying its ingredients are good for CLL in general, which has been my experience. Dosage is on the bottle. I’ve had zero side effects which is a miracle for me. I react to most everything.
GreenMedInfo CLL article
Peak Immune (But shop elsewhere, as it’s getting expensive on Lucky Vitamins)
Mike
July 31, 2020 at 4:11 pm
Denise, I have to admit, I’ve been blaming the fatigue on CLL but maybe you’re right – it could be the heat and insomnia. I’ll also try the uniquinol and up the Peak Immune which I cut back on to one pill every other day.
As usual, thanks for the solid input. I truly appreciate you!
Catch you in September .
Mike
Denise
August 3, 2020 at 10:31 am
You are so welcome, Mike! Glad I could help.