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!

Lovely Lady Lost to Pancreatic Cancer - 1/5/2021

 Blog#2

Jan 5, 2021

Hello Friends! ... not going to be my normal somewhat smarty pants today ...

* * *

It's a sad day for quite a lot of us in my "tribe."  We lost a lovely lady last night. Elaine Golden, my sister-in-law's Mother passed away from Pancreatic Cancer at about 1 a.m.  Her disease was only diagnosed about 2 months ago!  We will miss you Elaine!  We love you!

FYI - some symptoms of Pancreatic Cancer:

Signs and symptoms of pancreatic cancer often don't occur until the disease is advanced. They may include:

• Abdominal pain that radiates to your back
• Loss of appetite or unintended weight loss
• Yellowing of your skin and the whites of your eyes (jaundice)
• Light-colored stools
• Dark-colored urine
• Itchy skin
• New diagnosis of diabetes or existing diabetes that's becoming more difficult to control
• Blood clots
• Fatigue

A good website to learn more is:  https://www.mayoclinic.org/diseases-conditions/pancreatic-cancer/symptoms-causes/syc-20355421

I'm also mentioning Elaine and her illness because widespread advice recommends a healthy diet of colorful fruits and vegetables and whole grains may help reduce your risk of cancer.  Of course, this is what we are exploring on this blog!!

There appears to be some kind of connection between autoimmune problems and pancreatic cancer.

There actually IS something called 

Autoimmune Pancreatitis.

Now, I don't know if this was involved in Elaine's case. By the time she was diagnosed with cancer she was extremely sick and eaten up with the cancer.  But, it's worth looking into if you are on the autoimmune spectrum.

Here's a link from Cleveland Clinic you might want to visit:

https://my.clevelaAutoimmune Pancreatitisndclinic.org/health/diseases/17936-autoimmune-pancreatitis

* * *

Personal Note:

I am also keeping track of my own symptoms and meds on this blog.  Today was a VERY ITCHY Day!  Took my prescribed 60 mg of prednisone, 50 mg of hydroxyzine, Tylenol, sprayed my back with hydrocortisone - well actually my friend Pam did it for me - and I am still itching all over my body and it's driving me crazy! 

I am looking forward to gobbling down some roast beef tonight for dinner that brother John cooked for me last night.  If you have any ideas about alleviating itchiness, please put into comments!

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?