Tag: CLL Fear

CLL Covid-19 Update

Denise in her grandkids’ backyard playhouse.

So it’s August 3, 2020, and despite all my expectations, all of us (CLL or not) are still dealing with the COVID-19 pandemic. I have good news to share. While I am still absolutely careful (and “safe”), despite my long-term CLL diagnosis, I’m not nearly as crazed, worried and frightened as I was earlier in the process. Why? There are a few reasons.

Keeping track. I’ve been watching the stats for Michigan, where I live. In fact, we live in one of the “hot spots,” and early in the course of this thing I live close enough to a main street to hear the ambulance sirens wailing on their way to either Beaumont or Providence Hospital. Very unsettling, to say the least. I knew many people who took ill, some who we’d been with socially just about when they’d become infected — two generations of the same family. Thankfully, they’ve all had a full recovery and no hospitalizations.

We are no longer a hot spot. (Yay!) Yes, there are more cases. But I also look at the daily deaths. And daily deaths are way down. I’m sure one of your local stations would have the same where you live. Be sure to click on all three tabs so that you can see the cases, the recoveries, and the deaths. If you look at the accumulated death rate (scroll down to find this), it’s horrible, going up, up, up! But if you look at the daily deaths, you can see that the numbers are way down.

Why is the death rate down? I truly don’t have a definitive answer. We only get the information that is given us. I can make an educated guess. It could be that younger people are among the ill, and they are, as a group, more able to recuperate. It could be we’re better protecting our residents in nursing homes. It could be that the disease itself has mutated and is now less lethal. It could be that we have better treatments that are keeping people from going into that final deadly stage with the cytokine storms we’ve been hearing about. Whatever the case, in southeast Michigan, right here in a former epicenter, we’re doing pretty well. Thank God!

So what am I doing to be safe? (Disclaimer here: this is what I do, and not a blanket recommendation. Consult with your own physician or trusted health professional if you have reservations. Or research it further — which is always a good idea.) Despite these wonderful Michigan indicators, we still have to be careful. Just like we have to be careful all the time, because of our CLL diagnosis. Here is a list:

  1. I wear a mask. I don’t like it, particularly when it acts like summer here, and the temps are in the 90s, along with the attending humidity. I don’t wear it all the time, though. I wear it at work, but only when I have to leave my one-person (me) office and mingle with others.
  2. Disposable gloves. When I go to the market (yes! I go to the market), I wear not only the mask, but also some disposable gloves. I know, I know. “They” have told us not to wear gloves. Sorry! “They” used to tell us not to wear a mask, either. So there. No harm done. I wear some disposable plastic gloves made for sandwich making 🙂 and remove them and my mask, once I return to my car.
  3. Supplements. I’ve added to my boatload of supplements. Time for a list within a list: a.) Quercetin with zinc is supposed to be the next best thing to hydrochloroquine. The recommendation is to take it as soon as you suspect symptoms. I take it prophylactically. Which means I take it all the time, ‘just in case.’ I believe it fortifies me and keeps me from getting ill to begin with. I have no discernible side effects.
    b.) Beta Glucan. Beta glucan with l-lysine. Read the beta glucan article for information about this immune enhancer, which I ‘m now taking regularly. I take the product that includes l-lysine, which is an anti-viral I’ve used before to successfully get rid of cold sores. c.) N-A-C (N-acetylcysteine) Here is an article that includes information about N-A-C, as well as many other helpful supplements. I’ve been taking N-A-C for over a year now to help prevent hearing loss (along with other supplements –ai yi yi, I do take a lot!) It does help for that as well.

Please keep in mind that these supplements are just that…supplements. I still keep to a healthy diet with no added sugar, etc., etc. Get sleep, exercise, clean water, clean air, reduce stress (when possible), and all that other healthy stuff. Read through this blog for more of that.

The bottom line is that I’m treating the pandemic, now, the same way I treat CLL. I take precautions, I stick to them like glue. And then, I just live my life. It feels a lot more normal.

What are you doing to make yourself feel safe during these crazy times? Please write and let me know.

As always, wishing you the very best of health,

Denise

CLL & COVID-19: What to Do!


Denise with three of her six grandkids. No, I’m not able to be with them now. Yes, I miss them!

I’m always dishing out advise, so I will share my take on CLL and COVID-19 here. If you have the CLL diagnosis, be careful! I’m not sure we have the immune system to fight off COVID-19. I read one CLL doctor’s recommendation to get IGIV (immunoglobulin by IV) if you get sick, to build your immunity and prevent pneumonia. So keep that in mind to ask your doctor should you come in contact with this virus. I personally do not go in for vaccinations, as I believe they further stress our immune systems…however, get this information from your doctor and make your own choice. This is serious, life-threatening business, and we’re all in it for the long haul.

So what have I been doing? As of last Friday, I’ve been working at home. It feels like I’m hiding out, although I do call girlfriends, and I have nearly constant contact with the people at work. That said, I still feel isolated. I’m not confident about seeing my grandkids (there are six of them now, and I miss them!). Yesterday evening, the president indicated this could last till August, maybe July. OMG! I know I have it easier because I have the house to myself and don’t have to amuse or entertain children. We have heat and electricity, running water with a working hot-water tank, and natural gas. So far, we’ve been able to stock up on the basics. I won’t go into crowded supermarkets, but there is a local health-food store that has groceries, and I wear my gloves and go in and out quickly. There are no more restaurants, no more sporting events, our synagogue closed, schools shut down. Like everyone else, I hate this!

I’ve been ordering my supplements and stocking up on my most important items. I need my Peak Immune and my D’mannose (prevents UTIs). Yes, we have enough toilet paper. LOL My husband always shops for our home and business like a hoarder, and he bought a huge supply about a week prior to the rush, just because. We are a little low on tissues, because apparently hubby shops like the rest of the country and finds TP to be the biggest necessity.

At work, one person called in sick and another came in sick! This is a particularly vexing situation, and world-wide at that. It hit home Monday when one of our newest and youngest employees showed up to work, sick with fever and cough. (Honestly!) This despite two company-wide personal-distance meetings where all were told to stay home WITH PAY. All employees were also given printed materials stating the same. He was tested for COVID-19 yesterday. Our business is 90% shut down; it is a small business with about 25 employees. We’re waiting for his results. 

All that said, I prefer to remain optimistic. This situation will not go on forever. When the weather complies, we all can gather outdoors. In Michigan, that won’t be till April, and sometimes true spring doesn’t arrive till May. But the point is that this is temporary. 

What can we all do? Do you need the official list again? I’ve added a few thoughts of my own.

Stay home, if at all possible. I’ve been able to get my work done from home, so far. Avoid young children, unless you live with them and can’t help it. 

Wash hands frequently. Yes, I know that most people have heard this one ad nauseum. I use lukewarm water and mild soap, so as not to make my hands dry and cracked and vulnerable to germs. Remember also to moisturize your hands frequently. I like coconut oil because its soothing and it kills germs. Also O’keefe’s Working Hands is in all drugstores and is recommended by EWG.org (Environmental Working Group). 

Clean your doorknobs and other surfaces. I use peroxide or vinegar, either sprayed or applied to paper towel and wiped. (Mostly peroxide, as it doesn’t stink.) I’ve started doing this every day. Every. Day. (Getting tired of it, but still a good idea.) Clean your car interior, light switches, faucets, handles, everything you regularly touch.

Wear gloves if you go into public to shop. I wear those cheap stretchy gloves from the dollar store and wash them frequently. It’s less crazy looking and more comfortable than vinyl. It’s also still cold where I live, so not a bad plan. 

Cough into your elbow.

Bow vs Elbow Bump. According to my alternative doctor, do not elbow bump in greeting if you’re also sneezing into your elbow. Instead, he suggests a Japanese bow, from a distance. If you do get an unavoidable hand shake, wash your hands ASAP immediately after, or use hand sanitizer. (I prefer soap and water.) If you can’t wash or sanitize, keep your hands away from your face until you can!

Get enough sleep. Sleep restores your immune system. I often feel better in the morning no matter what’s going on, so long as I’ve had a good night’s sleep.

Take extra supplements. Zinc tablets. Peak Immune by Daiwa. Garlic pills (odorless, if you prefer). Elderberry (all sold out now, everywhere, but keep checking). Dr. Oz recommends Beta Glucan at 250 mg. There is also Echinacea, Oil of Oregano, and Licorice.

Chicken broth. Yes, mama’s traditional chicken soup is good for the soul – and for the immune system. Home made from organic free-range chicken is best. Simply put chicken in pot with carrots and celery, and maybe some parsnips. Add filtered water, just enough to cover all chicken and veggies. Add sea salt, bring to gentle boil. Once boiling, or nearly-boiling, cover and reduce to simmer for several hours. This makes DELICIOUS chicken and excellent soup. Sally Fallon of the Westin Price Foundation wrote an entire book about the health benefits of chicken soup. 

Meditate. My personal meditation is reading or writing, and sometimes sketching. Anything that gets your brain off COVID-19 or any other worry. Anything that makes you lose track of time. 

Air out your house. If It’s warm enough, and even if it isn’t…open your windows once or twice a day and let the fresh air in! A good air exchange can help rid your home of some of the pathogens.

Remove your shoes when you come in from the outdoors, particularly if you went to a market. Wear slippers inside, or go around in your stocking feet. No need to potentially track in dirt and possible germs.

Change your pillowcases daily. Or every-other day, if you prefer. This might involve more laundry, but this is where your face spends seven to nine hours each night. Keep it clean!

Know we will get through this. Engage in positive belief. We are a strong country and we will prevail. After that thought, we all need to take care of ourselves and our loved ones.

If you have more ideas on how to be safe, please share in the comments!

As always, wishing you the best of health! 

CLL: Facing the Fear and Loneliness

I just answered an email from a CLL-buddy who is feeling the fear and loneliness of a CLL diagnosis. She does not want to burden her husband by dwelling on her dark thoughts and worries about CLL, and her friends don’t seem to be any comfort. Of course not! This worries them too, and while they wouldn’t say it to her, knowing that a friend has a potentially fatal diagnosis makes them worry about their own lives, as well as about their friend. So what is a person to do? This was my answer to her:

Dear CLL Buddy,
I do understand how difficult it is to keep a happy face on this when you are so frightened. Eventually, you will feel confidence in yourself and in your health, and you won’t feel so frightened. Believe me, you are not alone in having fear of CLL! Here are a few suggestions that have worked for me.

1. Allow yourself to be frightened or upset for only one day at a time, particularly after a blood test that wasn’t what you wanted.

2. Research. The next day, concentrate on the blood marker that concerns you, and start some research on what you can do about it. Look up supplements and herbs. Make a lifestyle change, etc.

3. Have fun! Find time every day to do something you enjoy that is relaxing and gets your mind off of CLL! Read a book, go to a funny movie, visit with a friend (and not talk about CLL) maybe shopping or an art museum or something that you find fun (and gets your mind off the CLL).

4. Find your own personal meditation. I’ve tried meditation tapes (now they would be CDs or better yet, mp3s). This wasn’t for me, but many people find relief in this. My personal meditation is reading novels or writing, or even drawing. I have sketch books, and I find that when I’m sketching, I’m not thinking of anything but the pencil and sketchbook. I lose track of time. It is wonderful! Think back to childhood and what you enjoyed doing that made you lose track of time. Give yourself a gift of figuring this out, and then act on it!

5. Get a good night’s sleep. Make your bedroom light-proof so you can get a good sleep at night and make your own melatonin. Nothing makes you feel better than a good night’s sleep!

6. A new watchword: you are NOT about to explode! Any doctor that would see you today would send you home and then go about his or her business. You are not in imminent danger! Enjoy today! None of us know if there is a tomorrow (we get hit by the bus, etc., who knows?) So why waste today? Enjoy it! It is a gift you are squandering on worry.

7. Recognize that you can gain control of your health. It wasn’t until I became Macrobiotic (ironically, I am no longer macrobiotic, but still…) that I started to see the control I could exert over my CLL diagnosis. After one month of giving up all processed foods back in 2005, my WBC dropped back to 14, where it had been at diagnosis. While I’ve moved on from Macrobiotics, the lesson learned was that I COULD get control of this CLL thing. Since then, I’ve also learned that healing is all about the gut, the digestive system. Work on your digestion and you are working on your health! I’ve not been able to get to where my blood work indicates I’m CLL-free, but I am back in stage zero.

8. Seek out a therapist. If all of this leaves you worried still, see if you can find a therapist. There is nothing to be ashamed of about this. You are facing down your mortality, and we don’t like to do that. It is crazy-making. Back in 2003 or maybe 2004, I was constantly crying with worry and wondering how my boys would grow into manhood without me there. I worried about my husband. I cried about never meeting grandchildren. And see, all those tears were a waste of energy. That said, I DID see a therapist at that time, and it really helped me.

What I learned from him at that time was that I had to take action. Until that point, I felt like I was a victim; I had this CLL diagnosis and I believed it was too late to do anything about it. Damage was done, and I had to accept my fate. Now THAT was crazy! There was so much I could do, but talking to this therapist helped me see it. 

If you continue to be depressed, please find someone who might help. If they make you feel worse, find a different therapist. But do try all the other items above, first.

And I AM here for you. So please write whenever you need to. I do truly understand. I’m wishing you radiant health and a wonderfully happy day! Love, Denise

PS Writing about your worries here, on the site, really helps others. We’re all in this together!

Living Well with CLL —
the Movie Part 1

If you’re interested in more CLL alternative health videos, here is video #1. (I know, I know, this is my second posting of a CLL video; I posted out of order. Please forgive my inexperience at becoming a movie “professional.”) In this movie, I introduce Teresa, who came with her husband, Keith, to visit us in Michigan. I took advantage of the opportunity to record our conversations. Teresa told me she had a lot of questions, and I thought it was a good idea to share those questions online. It turns out that Teresa also has a lot of good ideas to share, even though she’s only be at it for a few months. I am impressed… and grateful for this new connection. And please return again and again as I continue to figure out how to make these videos! 🙂

 

Out of the Closet: When to Tell Friends and Family about a CLL Diagnosis

For whatever reason, when I was first diagnosed with chronic lymphocytic leukemia by my original hematologist, he advised that I keep the news to myself.

“It’s stage zero. You have no symptoms; you look healthy. So there’s really no reason to tell everyone you know—unless you want to.”

Unless you want to.

I had no idea what I wanted. I honestly didn’t even believe I really had CLL until my follow-up visit. I was totally expecting them to test my blood and apologize for their mistake. And I knew what I would say to that. “Thank you! God bless you! No harm, no foul.” And most of all… “Good bye!”

Of course, that didn’t happen.

But back to the issue of what and when to tell people. Now that it’s been sixteen years, as of this writing, I’ve learned that most people tell everyone everything. From day one.

But not me. I told my immediate family and one special friend and her husband. I could tell by her husband’s response that he felt like he was talking to a doomed woman. At that moment I knew what I wanted, and that’s what I did for nearly fifteen years.

I told no one.

I felt safe in my anonymity. I told myself I would share my story when I started chemo. At the time, I was positive chemo was inevitable. In 2001 if you look up “CLL” or “chronic lymphocytic leukemia” on Google, the news was not good. It was all about the Rai or Binet stages. And while I was low on both, all the attending information was not encouraging. Even the brochure from the hematologist was a colossal downer. The last section was about end-of-life decisions. How’s that for encouragement?

I didn’t want everyone to think of me as a dead woman, so I kept my mouth shut and swore my family to secrecy. I kept it that way for a long, long time. For years, actually.

It wasn’t until November 2011 that I started CLL Alternatives.com at the urging of my husband. He said it was time to share my story with other people. I wasn’t keen on that idea because I wasn’t ‘cured’ yet and, at the time, that was my personal benchmark. I wanted to be cancer free.

The reason for this benchmark: I’d been reading a site by a man with CLL who was trying just about every alternative under the sun, including artemisinin. Unfortunately, his final entry was a farewell post. His CLL was fatal, his body was riddled with cancer, and he didn’t have anything to add to his site. I was horrified. For him. For myself. I didn’t want to start a site to do that to others.

But still…by 2011 I was already ten years into this thing and it appeared I wasn’t about to sign off just yet. Not only that, I’d been actively researching and trying out alternatives and changing my lifestyle—and seeing results! So I felt I did, in fact, have something to share. So I started my web site, bringing me out of the closet, albeit anonymously. And ironically.

But slowly, some time around 2013, I started telling friends, one at a time. At first it made me uneasy, as if telling my tale would somehow make it more real. And lethal. But things had changed since 2001. A lot of people I knew were living with cancer. It wasn’t quite the sudden and immediate death sentence it had been.

So I told more friends, one by one, especially and always those who had or were close to someone who had a diagnosis. At this point, it couldn’t make the diagnosis any more real than it already was. And it certainly didn’t make the course of the disease any worse. In fact, by 2013, my WBC (white blood count) started to drop as a result of starting a raw food/low temperature-cooked food diet.

At the time of this writing, after sixteen years of living with a CLL diagnosis, I believe I’m out of the closet. I’m Denise and I have a CLL Diagnosis. Here is an important point: because of Hessel Baartse’s web site and story, I’ve learned to refuse to say that I “have CLL.” No. Instead I say I have a “CLL diagnosis.” This separates me from the illness, and I enjoy every degree of separation!

So what should you do if you are newly diagnosed? To tell or not to tell? My answer: it’s entirely up to you. I’d go with whatever feels right. For me, I needed the cushion of years—and wellness—before I could share my story with my in-person friends. I’m so glad my husband encouraged me to start CLLAlternatives.com because I’ve made so many friends, and so many valuable connections. And if I’ve helped a lot of people along the way, well, that’s kind of the point.

CLL Leukemia Diagnosis: Overcoming the Fear

fear

Now that it’s been over nine years since my diagnosis of CLL leukemia, I have to say that my mental state is quantifiably better than it was July 2001, when I first had to deal with it.  It helps enormously that I am still stage one, and have remained “steady” without the help of any conventional therapies.  Not a drop of chemo.  No prednisone.  This despite many harrowing brushes with low platelets, dropping red counts, rising white counts, hematuria (blood in urine) and other freak-out factors.

Like many CLL diagnosis “victims,” I experienced sadness, grieving, easy tears, insomnia, and morbid thoughts. At one point, I even started thinking carefully before investing in something lasting like, say, a leather coat.  It might be “wasteful,” I thought at the time.  After all, I wasn’t sure how many seasons I’d be around to enjoy it.  I was overcome by negative thoughts and FEAR.  Fear of dying.  Fear of death.  Fear of leaving my family behind.  This made me overwhelmingly sad.

How I overcame fear: Action! Once I realized that I could not and would not count on medical doctors to keep me alive, this truth set me free.  Once I started to take charge of my health, doing all the things you can read about on this site (and elsewhere), my mindset changed.  It started with my macrobiotic diet (which I ironically no longer follow) that I felt a sense of calm and peace.  I started to know in my heart that I was going to be fine.  I was planning to live.  That was in 2005.  It is now nearly the end of 2010 and I’m still here, living my life, doing what I have to do to be well.  But I am also quietly and calmly confident that I am going to be “here” for a long time.

The first step to wellness. So if you are depressed, worried, fearful, or in any way devastated about your CLL leukemia diagnosis (or that of a loved one), take heart!  You don’t have to curl up into a ball of worry.  There are things that you can do.  The more things you try (and measure with frequent blood tests) the better your chance to prevail.  Saying goodbye to fear is your first step on the road to wellness.

Due to an unreasonable amount of SPAM, I suggest that you email me at info(at)cllalternatives.com if you can’t seem to get a comment posted.