Calm that Itch with a bit of Downton Abbey

Day 26 of my nutrition detox effort for autoimmune disease per Dr. Amy Myers' book and 10 days after my first chemotherapy infusion, injection or whatever they call it.  So far, no issues that I can see from the chemo - just the same issues as pre-chemo when I was only on the prednisone - fatigue, itching and skin crawl, etc.

Today wasn't too bad with the dizziness and feeling out of sorts. Still managed to go to work for 6 hours and get some things accomplished.  Came home at 4 pm and took a nap.  I'm liking these naps!  They do keep me from being quite so "walking dead" with brain fog and balance issues.

Post nap, however, a full-blown "itch-out" started up and seemed to attack every cell of my body. I took some more hydroxyzine which I have in 10 mg pill options so I can adjust the dosage based on the need at the time.  Hydroxyzine, while helpful with itching and anxiety, does make you sleepy, so ... if I don't finish this post ... properly ... you'll know what happened .... zzzzzz

snore ... but, hey, I'm back.  One thing I have found to help with itching and anxiety attacks which go hand-in-hand is that it DOES help to try to calm yourself with distractions. For example, this evening I was surfing around the Internet on my TV and found "Mary Berry's Country House Secrets" on Britbox.      

The first episode is about Highclere Castle the real country home where the TV series and movie "Downton Abbey" is set and was filmed.  Mary Berry's visit at the castle includes an enchanting (and calming) visit with the current Earl and Countess of Carnarvon. Mary Berry cooks and dines with them, visits with their game team and more importantly the cute and smart hunting spaniels that live there, walks the historic house and grounds, drops in on their museum, and generally does what we Americans would consider very English things like have tea.  It's all very calming, yet interesting. I stayed awake and my skin cells seemed to calm down!   Check it out - you can find it on the big "A" - Amazon Prime.

Day 20 of the Detox

6:30 am.  Day 20 ... of the new year and my 31-day Detox effort following Dr. Amy Myers book "The Autoimmune Solution."   

My first injection / infusion of chemotherapy was yesterday. So far, not too bad. I do have a "buzzy"  headache and I don't get headaches too often. So that may be a side effect. I don't know ...!

*   *   *   

Misery DOES love company!  

And, annoying symptoms love to have company! I doubt that all these cuts on my fingers have anything to do with the autoimmune condition, but who knows? Anyway, here's a picture of one of my hands. Took 20 minutes last night to wrap up all these cuts. Wish I knew how they got there. If I did I wouldn't do THAT again!    

*    *   *

And, here, below, is a picture of dinner tonight. Sometimes it's just the right combination of things rather than any convoluted recipe that can make the difference between delicious and inedible.  

What's in this bowl?            

* taking up the bottom of the bowl are "power greens" - spinach, mizuna, chard & kale

* the little white stuff is "riced" organic cauliflower - that's NOT cheese!

* organic, non-GMO shredded carrots

* one organic sliced avocado

* broccoli florets (more on broccoli to come) 

* some olives 

* bacon

What?!  bacon!  Well it's uncured, vegetarian-fed, no preservatives, no antibiotics, or hormones, and for a while longer I have to eat some small amount of meat.

*   *   * 

I just watched "The Big FAT Lie" documentary that can be found on Amazon. It's set in New Zealand. If you've got Prime, it's free.  This is another one to watch and raises questions about whether or not we should be eating any animal products at all. It really discourages processed meat. And milk. It pushes a whole foods, plant-based diet.

I kind of already agree with it. In my heart I'm a vegetarian. However, I have a history of anemia throughout my life and on the current plan wanted to keep eating meat to get my scores up.  The hematologist/oncologist says I've succeeded. For the first time in my adult life I'm not anemic. The fatigue is either being caused by the autoimmune disease or the medications I'm on.

Anyway, I digress, as usual. Watch the documentary, but watch all the way through. Some things come up that don't get mentioned in the beginning that are interesting indeed. I'm always afraid folks will miss some good stuff because they think "oh this documentary is only about this one thing and I'm not interested so I'll turn it off." 

So stay with it the whole way through. Lots to think about.  Get it HERE.

Put the Lime in the Coconut - Another Doctor - Jan 18, 2021

Put the lime in the coconut ... so many doctors, so little time, so many ideas!  Went to see a practice that specializes in PAIN this afternoon about the itching (hoping to get acupuncture and try that) - nope have to sign up and start physical therapy. Rats! another appointment to book, remember, and show up to!

The Coconut song kept playing in my head the whole time ...I guess because there's grain in there, there's gluten, so can't have that.  Hmmm ... let's devise a gluten-free party drink.

Play the Practical Magic "Coconut" video HERE.        

That's ok - my left foot is not working right and it's affecting my leg and so now I'm limping!  They want to try some PT on that and maybe talk me to an injection in my ankle, although they were saying it's probably a lower back issue (!) and let's do ANOTHER MRI - my 2nd so far this year and it's only Jan. 18.

It's hard to sew, paint, and do some of the things I would like to do because my hands are unsteady.  But I do like to read and look at decorating books. I have one out from the library by Carolyne Roehm called A Passion for Blue & White.  Gorgeous pictures of gorgeous rooms that calm my nerves. I'm also going through a blue and white decorating phase now so that's good. Color is everything to me. Right now this autoimmune disease is RED. I used to love red. Not so much now.

So, tomorrow at 7 am my friend Pam will take me for my first chemotherapy  - they call it Rituxan or Ritiximab - in an effort to deal with the inflammation. Anyway, it's like 5 hours long and they told me to pack a lunch!

Should go to bed now. More on how that goes later.

Is Today's Wheat Killing Us?

Today was better than yesterday - not as much itching, I got a short nap in, but my head was still spinning and my left foot appears to be getting weaker, more tingly, and I'm less able to flex it or grasp with my toes.  Still a better day than yesterday.

Did attend the life celebration for my brother Bill's mother-in-law Elaine.  It was nice - even though the whole thing had to be done on zoom.  Elaine died of pancreatic cancer - like six weeks after being diagnosed. So horrible. She didn't deserve that. She was a sweet lady.

So, how does one get pancreatic cancer out of seemingly nowhere? I just watched "What's With Wheat" a 90 minute-ish documentary on Amazon.   

What they are saying here is that society has moved away so much from infectious disease and death (with the exception of the coronavirus) and more toward chronic disease that's  likely more caused by the changes in our world - use of pesticides, herbicides (Round Up), polluted water - all on our food.  

One of the esteemed doctors on the video says that probably 17% of the entire population has an autoimmune disorder and most don't know it.

What's the big killer that's causing autoimmune disease and other chronic disease. Gluten. That's right wheat and the chemical compounds that are put in our food, cleaners, cosmetics, supplements, and more.

I HIGHLY RECOMMEND LOOKING UP THIS VIDEO - "WHAT'S WITH WHEAT" and that you start thinking about what you are feeding your family.  Today's wheat is not the same wheat our parents or ancestors ate. Don't wait to do this!

Woman driven crazy by Prednisone murders pineapple - 1/16/21

Blog#5

Jan 16, 2021 

The itching / tingling across my torso is really getting to me this morning ... If I didn't have this symptom, I doubt I would take the Hydroxyzine which makes me tired, and the Prednisone which is just making me feel very weird all the time (spaced out, dizzy, like I could faint at any moment, although I haven't yet) and has now made me descend into a level of irritability that is not normal for me.

Hence the poor pineapple.  I was just too irritable and woozy to dissect it properly.

However, if it were not for the itching and tingling, I would not have been as desperate to find out the reason for it and pushed for an answer.
I have Microscopic Polyangiitis, which is a type of Vasculitis, which is a type of AUTOIMMUNE disorder.

After 7 months and 7 months of doctors saying they didn't know what I had - what was making me so miserable - my doctor of Rheumatology at the Colorado Center for Arthritis & Osteoporosis announced on the morning of New Year's Eve that it was Vasculitis Microscopic Polyangiitis (MPA).

Happy New Year! 

MPA is a rare disorder that causes the immune system to attack blood vessels. Vasculitis is an autoimmune disease that causes inflammation and narrowing of blood vessels (arteries, veins and capillaries). These vessels carry blood to and from the heart and the body's organs.

As the webpage for Johns Hopkins notes, “Many signs and symptoms are associated with MPA. This disease can affect many of the body’s organ systems including (but not limited to) the kidneys, nervous system (particularly the peripheral nerves, as opposed to the brain or spinal cord), skin, and lungs. In addition, generalized symptoms such as fever and weight loss are very common.”

 

With me, it’s the itching/tingling and fatigue that are most problematic.  Oh yes, and the dizzy-crazy-unbalanced feel caused by the Prednisone and Hydroxyzine. For a person with many interests and things that I want to do, these symptoms and side effects are very hard to deal with. I'm not one to lie around!

Let's ALL just stay alive - 1/8/2021

Some days are worse than others. True for life in general, and particularly true when battling an autoimmune disease, or any disease for that matter.

For example, the last 24 hours have been particularly hard.  

Hard enough that I could just scream.   

And,

 I

 mean 

scream 

almost continuously....  

Yesterday didn't start out bad.  I was in my normal, prednisone-induced stupor at the office, feeling like at any moment I could drop dead. But then I went to the grocery store and another customer, a seemingly harmless old guy, decided he wanted to admire my coat unclose ...AND HE WASN'T WEARING A MASK!

AAAAAH!!

In the split second it took me to realize he wasn't wearing a mask, I started backing away from him, dropping my organic avocado in the process because I couldn't get the plastic produce to open. More on that most hated part of the grocery experience, later.  

But would you believe he moved in closer?!  The mask-less guy wanted to explain to me the science behind why masks don't work. I was not interested in his opinion (why should I listen to him and not Dr. Tony Fauci?) and told him to leave me alone.  Then, in the store two more people went by without masks and they too were almost on top of me.                           

Covid-19 transition prevention is important enough, but many in the medical field believe that autoimmune folk are also at greater risk for getting any number of things - especially for those that are on prednisone or another corticosteroid.  People need to wear masks and King Soopers needs to enforce the regulations particular to their locality.

The whole grocery store experience set me off and throughout the day today my symptoms have been much worse.  It feels like bugs are running under my skin, biting me. This "skin crawl" along with the overall itchiness, dizziness, brain fog, sudden hot and cold flashes and exhaustion have made it a defeating day.

But, hey, at least I was able to get into work for a few hours. And, I'm alive!  Just staying alive like Hawkeye says in Last of the Mohicans, sometimes has to be the goal for the day. Which is more than can be said for the 4,000+ people that died yesterday in this country from Covid-19 -- the most virus-related deaths the country has reported in one day since the pandemic's start.

People!  Wear your masks and admonish those that don't, until this pandemic is over! Let's all stay alive!

Coloring as Therapy - 1/6/2021

Blog#3

Jan 6, 2021 - a day that will not be forgotten

On a day of just chaos and craziness - the day Trumpsters stormed the U.S. Capitol today to try to keep their demagogue in power OR maybe they were just bored - I see some possible light to help me deal with my own chaos and crazy brought on by autoimmune and other problems.

I went to see my favorite mental therapist today, Gladys. I like Gladys. She's interested, involved, and thoughtful.  If she doesn't know the answer she says, "Let me look into this some more and ponder it."

With my health situation, labeled out loud as "complicated" by two prominent specialists, she said she wanted more time to think and research.  But!  She did have a plan for me to try.  

Coloring.

Well actually, coloring as therapy to calm me and not provide fire to my symptoms of allover itching, allover skin crawl, pain, temperature change, shaking hands, brain fog like London for crying out load, and sometimes despair caused by my autoimmune disease. The itching and skin crawl are the worst. They are what DROVE me to visit 7 different physicians for answers and relief.

But, Gladys is not just suggesting coloring to refocus and calm my mind.

Drawing.

Gladys suggested that I try "drawing" my itching and other symptoms when they start up for their worst part of the day - around 7 pm.

So, I'm going to do it ...!  I have a notebook here and I'm going to try to express in my scribbles what I feel, and note the time I start and stop, and whether that time it helped and how.

I may even try starting out drawing angrily and in anguish - the way I get sometimes in the evening, and then trying to transition to calm drawing and coloring. Maybe acknowledging my symptoms will help. Hold on -- I need to get up and turn off the fan, my hot flash has passed and now I'm freezing.

You know, like starting out with Thunderstruck by AC-DC and transitioning to Clair de Lune by French composer Claude Debussy ... 

I know you know BOTH these pieces. You've heard them if you can't recall them off the bat.  They are two of my favorites and I do believe music can be helpful as part of a "symptom-calming" routine.

Old "Clair" has been batting around in my drug-rattled brain ever since I saw Ocean's Eleven again on Monday night.  Clair de Lune is very peaceful, but sometimes it makes me cry. I can cry easily these days. I quit the antidepressants and Gladys approves. She says anyone who is fighting this hard with the nutrition angle and gets up everyday to still go to work (half days usually) doesn't need antidepressants. I'm glad.  I don't want to take anymore chemicals than I have to. They get all mixed up in there, make you extra tired and crazy, and they might just KILL YOU.

 * * *

Today's Meds update:  I put THE CREAM pretty much all over my body last night after my showers and you know what?  I haven't had to gobble Hydroxyzine all day and walk around like a zombie so much.  I haven't itched or "skin crawled" so much today. ('Course the day is not over.  It's only 7 pm.)

THE CREAM is Triamcinolone Acetonide 0.1% USP.  My Dermatologist prescribed it. Debbie-Bob gives it four stars. Check it out.

 * * *

Shout out!    Hey! Welcome home Sandor!  What? Like 76 straight days in the hospital, fighting to deal with your unique situation while trying to avoid getting COVID.  Congrats. Keep getting better.

* * *

Well, I better go back to the TV to see what's happening with that disgusting attack on our Democracy!

It's 5 am ...!

Blog#1

Jan 4, 2021

It’s  5 am and I’m up blogging.  Hey – Hemingway was an early writer too!  I think I successfully let my sleeping dog lie –my little, most adorable Gracie, a perfect yorkie-poo is still zonked out in the middle of the bed. (why have all my dogs insisted in sleeping the middle and forced me to the side of a queen size bed?)

 

I’m awake because of the Prednisone, I imagine, and the itching and skin-crawling; but I just took 30 mg of Hydroxyzine to work on that. (I’m afraid it’s also going to make me a bit groggy this morning just when I’m trying to go see one of my doctors.)

 

As I was lying there debating in my head about the merits of “Oh hell, I may as well get up …”

I did come up with some topics for the blog and featurettes that I’d like to add in this blog occasionally. These include:

 

• Questions for YOU dear reader
• Quick quizzes – either about the Autoimmune spectrum or various odds and ends
• Interesting (and hopefully sometimes fund) facts – about anything
• “Yeah, you’re right, it’s a good thing, Martha” – tips, etc.
• Recipes – my own and comments on others
• What I ate today
• Update on what meds I’m on and what impact they are having
• How I’ve felt in the last 24 hours or so
• Daily accomplishments 

 

This morning, however, I thought I’d give you a bit of info about the name of this blog:

 

I’m calling this blog “Wellness Explorations” because I am new to this whole autoimmune thing and am just beginning to explore how to handle it.  I also think that smart people would agree you can never stop learning, investigating, researching, exploring …about anything, but we’ll try to stay on track here mainly about autoimmunity and general wellness, physical and mental.  I hope that you will interact with me and share what YOU have learned, heard, read about, and picked up from the official medical community and even on the street.  Let’s explore together!

 

 ***

 

Recipe:  I concocted this last night, right about midnight, while I had “Deadpool” on You Tube TV for the 50^thtime in the background. (Ryan Reynolds, so cute.)  and drank the whole glass without gagging (which is more than one could say about that stuff you have to drink before a colonoscopy!)  Actually, it was surprisingly “not too bad.”

 

Midnight in the Garden of Good … Quick Basic Green Smoothie

        Fast but nutritious for lazy or busy people who can’t get their butt in the bed at a reasonable hour

 

In a blender, starting on the grind / chop salsa setting, drop in:

 

• A handful of kale
• Handful of spinach
• About 1 cup apple juice
• About a third of avocado 
• Enough distilled water to make it drinkable – add a little as you grind to get the desired consistency. We'll talk more in the future about WHY distilled water.

 

Grind down the big pieces on chop/ salsa setting, then mess around with the settings on your blender to get a well-blended drink.  I ended up on “puree whip” to get some froth.

 

Drink it. Now. Not later.

 

Let’s say for now that this is my baseline for my green smoothie. You could throw anything additional in there.  I’ll post more successful recipes that I concoct as we go along, OR post some great ones I find from other folks, crediting of course.  Any ideas, please comment.

 

Quick Quiz:

Why do I call the above recipe the Midnight in the Garden of Good … basic smoothie:

 

1.     The first time I concocted it, it was midnight

2.     It’s got a garden of good in it and safe for autoimmune folk

3.     I just liked the movie

4.     plus I was born in Savannah, and my people know/knew the people in the book

 

 

Answer:  ding, ding. All of the above.

 

Time to go take the levothyroxine. See you later alligator  (Which are also green, like the smoothie!)

 

Question for YOU dear reader - Garlic

 

So, what’s the deal with garlic?  Some places I read autoimmune folk can eat it, other places say it’s a no-no.  What’s your experience?