Day 34 of the Dr. Amy Myers nutrition protocol

I have been remiss in writing in this diary/blog as of late because I've been battling my brain!  Since last I wrote, I have been having anxiety/panic attacks and deep dives into depression. The Doc says this is not part of the autoimmune disorder, or the medicines HE has me on, but just the culmination of the stress and worry about my health. He says I'm under a lot of that, and my normally, pragmatically positive "can do" attitude is just finally being impacted.

I'm writing this in the doctor's office where I am getting my 2nd infusion of chemotherapy (Rituxan).  It's 10:45 am and we just started the Rituxan drip so I will be here awhile.  Before we could start the Rituxan, he gave me an infusion of super steroid of some kind for my left and foot.  He's afraid I'm going to have permanent foot drop if we don't do something about it NOW.

You see, I have tingling and numbness in both feet, and all the way up the left leg.  But, I've lost the dependable use of the toes on my left foot.  I can't raise the toes on demand the way a healthy foot would.

The Doc (my rheumatologist) says I have Mononeuritis Multiplex.  WHAT?  Never heard of it.

The Johns Hopkins website says this 

“Mononeuritis multiplex” refers to severe patterns of weakness or clumsiness causing weakness or paralysis of different muscles. These more cataclysmic episodes of numbness or weakness necessitate a thorough diagnostic evaluation, both by nerve-conduction tests, and often by biopsy of nerve and/or muscles. Mononeuritis multiplex occurs when there is inflammation of small blood-vessels. The muscles and nerves nourished by such blood vessels may be deprived of oxygen and nutrients, and is similar to a “stroke of the nervous system.” In such cases, ameliorating symptoms of pain is not sufficient – immunosuppressant therapy is always warranted in cases of mononeuritis multiplex.

The pace of recovery from mononeuritis multiplex can be frustratingly slow. In some cases, it may be difficult to determine whether the slow pace of recovery is a manifestation of the slow process of healing and “rewiring,” or is due to ongoing and ineffectively treated inflammation. In such cases, repeat nerve-conduction tests may be important. Immunosuppressant medications which may be used in the pattern of mononeuritis multiplex includes cyclophosphamide, azathioprine, as well as prednisone.

OK!  So another symptom!  Actually, aside from feeling unbalanced and having a hard time using the leg it hasn't been that problematic.  The hardest thing out of all the symptoms has been the depression I referred to earlier which has popped up in the last two weeks.  The dives into despair have been the most uncomfortable so far!

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 ...!

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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!    

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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.

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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.

Done!
My first chemotherapy.   It may be hard to see but this is a totally empty bag of Rituxan (rituximab) infusion for my autoimmune disease - vasculitis Microscopic Polyangiitis.

 All drained out.

I had to be to the doctor's office this morning by 7:30 am which caused some anxiety which I didn't need to add to my already accumulated concern - fear of the unknown, you know.

Anyway, I overslept, past the alarms - which is unusual since I've been waking up at 5 am every other day recently. So, I was in a rush and confused. Good thing I had all my stuff together and ready to go but did not have a morning shower yet so that caused stress.

I guess my anxiety was pretty high. My blood pressure was 165/80. It came back down over the course of the morning to normal, but it IS amazing the affect stress has on your actual physical being.

The nurse let the medicine drip in slowly, increasing the speed of the drip as she checked in with me on the half hour taking my blood pressure and oxygen. She said that actually I did well. 

If your doctor prescribes chemo with Rituxan, try to remain calm.  "Do as I say, not as I do/did."

Also - pack a lunch - it takes a while.  Bring something to read. There was no TV in the office's infusion room, but I'm not sure I would've wanted one. You need to be able to doze off.

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Quick tips if you are prescribed Rituxan:

Look up on the Internet beforehand about it's role in your particular autoimmune disorder.  Knowledge is power and it will make you feel better.

Ask your medical team questions: what other medicines can you take before and after your infusion.

Get someone to drive you and take you home. You might have side effects and it's nice to have support.

Prepare and set out everything you will need at the infusion the night before.

Set your alarm!  Set several in fact.

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I should note that today was also the first national ceremony for the over 400,000 people that have died in the U.S. from the coronavirus pandemic.

Tomorrow is the inauguration for Joe Biden as president. He has a big job ahead of him and needs our support.

Tomorrow is also the one year anniversary of the first recognized person with Covid in this country. He flew into Seattle one year ago tomorrow and landed in Seattle. And so it began ...

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!