Triple Positive – A Convo

Dear Whomever… this is a breast cancer sidebar… and a short one.

“Triple-positive” refers to breast tumors that are ER-, PR- and HER2-positive. It means the cancer cells grow in response to estrogen (ER), progesterone (PR) and a growth-promoting protein that’s on the outside of all breast cells known as HER2.”

Party Time!

“This type of breast cancer tends to grow and spread faster than others. It is particularly aggressive and requires additional treatment. Ahem… mine was 17 months long. She (the doc) said: “We did a PET scan and it looked good, but that doesn’t mean there isn’t something starting in your body we can’t see. So though you’re an advanced Stage 3, we’re going to treat you as a Stage 4.” This was 2014.

Fast forward to today 10.11.21.

Oncologist: What was your reason for stopping your medication (Letrozole) last year? And, by the way, I was on meds just shy of 5 years.

Me: I believed it was a quality of life thing, and I wanted to feel like a female again. That drug just shuts it off. So, now, the overwhelming thing is I know I’m a high risk for metastasis… I think I want to go back on the medication.

Oncologist: Yes, you are a VERY high risk and I’m glad to hear this. I have three patients right now in treatment that are all triple positive and all have cancer recurrence. Two were off their med and one was still taking theirs. This is a good decision.

I’m solid in my decision but it makes me want to cry at the same time. WTF.

My body is in worse conflict than the globe.

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The Hamster Wheel

Or, How My Cheeks Got Out of Control.

Or, Living The Life of Fine Lines

It’s been awhile since I’ve written anything and I do have SO MUCH to say! I may be telling my story of events but it’s for the benefit of my family and friends. You got that?

This is me.

Sometimes I feel like I just can’t catch a break. I am however, the eternal optimist and that tide turns fairly quickly. I just completed the second of my Rituxan infusions for RA and just got home to jump on this blog (I’m on a steroid high, but nevermind that). I should back up a bit and mention I saw the doc a few weeks ago who granted another cortisone shot for my left knee. I wanted both done but since the right hurt less he wanted to see how the infusions affected it first. Fair enough. So… I explained to him some bottom lines: My infusions last me 3 months and then I enter heck (-_-). We started out every 6 months but that REALLY was not working so upped it to every 4…. but… um… sadly, we can’t go any shorter. Alright then… what is known can be dealt with.

I explained to him something is happening to my left leg. I have ever present pulling and tightening in my calf and achilles tendon… on occasion in my hamstring, and though I try to exercise and stretch the lower leg muscles it’s not helping at all. I have a very hard time flexing the calf muscle (or it won’t). I asked: “So, is this the muscle, the ligament, the tendon, what’s happening?” He said “yes.” All of the above. He has his suspicions. He believes it is spinal based, which has also been worse. I can’t walk or be up on my feet for very long and HAVE to sit down. Seems like that in particular has been going on a very long time.

I had a spinal MRI in 2014 that diagnosed Advanced Degenerative Disc. Saw a dismissive doctor, shut him off in my defense and walked away… on my cane. Sheesh. And then shit hit the fan with breast cancer that usurped several years. Okay… I’m having these symptoms on top of RA, Neuropathy, Fibromyalgia, Insanity… and the doc says lets do an x-ray and maybe some PT, but x-ray first. Oh, and most important, he also found an x-ray from 2016 of my spine… I have no memory of this but how could you expect me too??? Seriously??? We’ll talk a little more about this. Tiny bit.

On my first infusion day I also get my x-ray. By the early afternoon I have the results.

Wait… what? I didn’t know about that latter part… History of??? Not a single soul told me about this! Grrr!

Okay, I know this is not english.. and I have to start Googling soon myself… bear with me here…

My head hurts!!! And my back… and my leg!!! The real kicker here and this is where things get serious… the kicker is #3 Atherosclerotic disease.

“Atherosclerosis is a specific type of arteriosclerosis. Atherosclerosis is the buildup of fats, cholesterol and other substances in and on your artery walls.”

AND! It also mentions “Vascular calcifications are noted within the distal aorta.”

“Vascular calcifications are mineral deposits on the walls of your arteries and veins. These mineral deposits sometimes stick to fatty deposits, or plaques, that are already built up on the walls of a blood vessel. Vascular calcifications are common but potentially serious.”

Too much medical stuff for ya? I’m sorry… I HAVE to write this down…

If you’ve been reading my blog since the beginning (this doesn’t include the Breast Cancer blog) you will remember (maybe) a couple things like:

  1. “You have a fatty liver, this is not your fault, this was because of the chemo.” Says the oncologist.
  2. “Your strokes were likely from a bad fall.” Says the Neurologist.

My Disclaimer: I’M NOT STUPID! and ARE YOU KIDDING ME?!?!?!

I’m obviously ignorant of many things, however. I’m trying to piece these things together that are happening to me… in my pea brain, that I ALLOWED to happen to me. I’m me. I’m a butter ball, I have a love affair with good food, and sometimes stupid comfort food. Whatever all the fine points of food addiction are I’m pretty sure I hit them all.

My cholesterol is a little high, but the other thing that’s supposed to be low or high… um… isn’t. (Yes, I WILL research this… remembering is another issue altogether, I used to know, whatever). So I DO take responsibility for my actions, late as it may be <groan>.

Yet. At the very same time I also feel peeved at my healthcare core team: PCP, Rheumatologist, Neurologist, Oncologist. Not one time did one of them say, you need to go on a heart healthy diet, you need to lose some weight, none of them told me what those findings meant or could mean from all the blood tests (4 times a year, observed by all doctors, as well as all the other tests as well) I’ve had for YEARS! Perhaps they mistakenly thought I was intelligent enough to realize, well, everything, and do what needed to be done. Right.

It was smoothed over. Was I too nice of a person and they didn’t want to upset me? Did they think I’d been through enough already, or, maybe what was the point? Do they not do that anymore, do they not tell you? I’m… well, I’m speechless. I suppose I could be, but that’s not me.

I remember saying to the Neurologist after my strokes “is this because of my cholesterol?” She said “no!” This is one of those fine lines that a person in denial will take to the grave. Savvy? I can go on as usual because my cholesterol was not the cause. Phew!

Same with the fatty liver. The fine line is the same, oh, it’s the chemo. Life goes on…

What we are left with, and pardon my French as I scream- “FuuuuuucccccccK!!!!!!” My kettle is bubbling with denial, regret, anger, and all the other emotionally based mental indigestion that goes with it. But, I am no stranger to change, readjustment or plain ol’ lifestyle rewrite.

So you know what I did? I started the Mediterranean Diet almost immediately. I started doing back exercises and you just would never imagine that my lower left leg is doing better… and yet it is. AND just to be clear, I was not getting enough oxygen to my leg. Think on that one… scary!

I’m diggin’ this diet, a lot! I have yet to figure out the gluten-free component, but it will be around the corner soon. This is a very tasty diet! New spices! And the S.O? He’s not complaining, though he won’t eat his Kalamata olives!

I found I can live with it. (pun intended, and a lot of hope!) I’ll keep you posted!

If anyone has any brilliant ideas about this Mediterranean diet endeavor, I’m all ears! Love to YOU!

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PS! It’s October, breast cancer month! Ladies and gents alike… check ’em out!

The Faux COVID Chronicles Extravaganza

March was incredibly eventful for me in the medical sense. Had the COVID scare and continued being quite sick with fevers, incredible chills, muscle aches, nausea, and most importantly- unable to walk 5 feet without shortness of breath and a pulse oximeter as low as 83%. Lips turning blue and purple and fingertips blue. Right. Not good signs. My friend drove me to the hospital emergency department on March 23 where a swarm of warm care began. During my stay they tested me twice for COVID and both tests were negative… thankfully.

This began the 2 strong antibiotics, steroids, and other various meds to help with O2 saturation. I think I was on 32% O2 for a couple of days with a strange nasal cannula that pushed in hot moist O2- it was nice actually. I could not maintain O2 saturation when up and about, even to the bathroom, for a couple of days- hence ICU. However, with the antibiotics I did come around rather quickly and improved daily. O2 was lowered sometimes a couple of times a day.

Steroids and I are old friends. I would not be alive this very day, they literally saved my life in the 90’s. Anyway, through the extreme emotionality they cause in me I found myself in tears many times and a couple of times thinking about being in the hospital, away from any loved ones or friends, with a great team of nursing care, but NO VISITORS. I often thought of those COVID patients who were so ill and so alone. Leaves you with a real gratitude for- everything. And they were indeed around me in the ICU.

I got out alive, no COVID, but recovering from bacterial pneumonia. Still trying to shake off a muddled brain. Still getting short of breath- hard to oxygenate this body when up and about… but it’s getting better I think. Lungs are slow healers. And I’m also left with side effects of the big dose meds I was on. Still on steroids but tapering, another week and I’m done.

What a trip. So thankful.


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COVID Chronicles Week 1

My site has morphed into a hopefully temporary COVID extravaganza. Each day has been a little the same and then very different.

I lost 7 lbs in 6 days. Eating didn’t really hit me until Thursday when I craved fish sticks. Prior to that it was toast- mostly dry but sometimes a little butter. Nothing else. I tried to drink fluids and did my best but fell short a couple of days and when you have a fever… it’s not pretty.

Every day consists of waking, pounding headache and pain, chills and shaking, fever- usually 101.+. This is usually for 8 hours (I am in no way exaggerating!), today it was only 4. Usually, it’s the 3rd dose of Tylenol that really puts things right. Then comes the sweats for a couple of hours.

My lungs are incredibly tight with occasional wheezing. I use 2 inhalers and I want to say that’s helping. I try very hard to breathe deep and stretch those lungs but they just. don’t. want. to. go.

Todays shower was the first time I had trouble breathing in there. I felt faint a few times. When I got out I couldn’t even dry off I headed for the bed. No choice. HAD TO GO HORIZONTAL!!! And another first for today is that vision you get when you’re going to faint. You know, your field of vision gets splotchy until you’re out. I haven’t gone “out” but so damn close and the day is young.

Oddly though when I’ve been sitting for awhile and have caught my breath I feel better then I have all week. So weird. Then I get up to go to the bathroom and I’m panting wildly and nearly gasping for air.

All told, I did better when I had a stroke I think. This is just so freaking weird. Sometimes chills and shaking surface again if I don’t keep on top of the Tylenol, but it’s usually a shortened episode.

My neck hurts so much and it’s hard to hold this big melon up sometimes. I really can’t do much, everything takes too much energy. I don’t have any of that.

I do have a swell guy that loves my cravings, I wonder how much weight he’ll lose… I wonder how long this will last. I did get through the first week without hospitalization. I’ll keep trying to do that.

Peace and Love

Strength

There’s a serious punch line to this one near the end. Unbelievable. I started this blog Friday morning. By Friday night my life began to change. For now, let me walk back with my recent history.

Friday, March 12th: Sometimes starting these blogs is difficult for me, other times it just flows. A little like life, that one. I hate to start off like a Debbie Downer too… but life has been VERY difficult for me the past month, and for about 3 months before it got really bad.

I saw the Rheumatologist last Monday. I went in practically in tears because every muscle in my entire body hurt. Head to toe. No exaggeration. Neck especially, and back, and right hip, and both knees and ankles and feet. Oh, and elbows and hands. But my neck… it’s hard to hold my head up, and limited range of motion in spite of exercises for it. Hurts. I hurt all over and that’s what I told him. He is a very cool guy (he has 300 pairs of shoes… and I don’t hold that against him, how could I judge him?), a really great listener. When I think I’m rambling he tells me he gets all kinds of info that is sometimes clues to what’s really going on. What a guy, huh?

I had a 4 week Prednisone protocol for an RA flareup that I had just finished the day I saw him. It took me over a month to realize I was even in a flareup! Pain, okay, always have that, but it was growing every single day until one day I woke up in the wee hours with inflamed knees and elbows. It screamed at me until I got it. Sheesh. Why was I so slow to realize this was happening? As I tapered down the med the pain started climbing back up… differently. Muscles hurt, really ache, it felt like I was always walking up hill, leg muscles wanted to cramp all the time and most of all The Fatigue! Holy MaMa! There I was the last 2 weeks wanting to cry all the time. Barely making through making dinner because it was too hard to stand that long. I was exhausted and panting walking from one end of the apartment to the other. I talked to him about my increased trouble with finding words and relying on “you know, the thing,” and “stuff,” and the like. And my memory which was altered anyway by the strokes but was recently getting worse. Way worse! And I mentioned to him how frequently at night I can be watching TV, and suddenly my body and brain will just start shutting down (like I’m going to faint)and it becomes a race to get into bed. He equated that with compensating throughout the entire day to maintain and then my body just can’t do it any more. It needed to shut down.

Where we are right now is a belief my Fibromyalgia was increasing. My neuropathy (thank you, Chemo) was too and my med was upped (dammit!) which will help both. He tried to up the Duloxetine but after 3 days I couldn’t tolerate it- severe stabbing headaches.

We’ll see how this goes, right? Who knows, bodies are a little bit of a mystery and therefore a guessing game at best. So that’s been my life of late. How about you?

Then there’s the state of the world be live in. It’s getting me down. Really down, on top of all the body stuff. I do really feel like things will get better but the constant barrage of news and world affairs… yikes! I should do another media shut out but I’d feel guilty. I don’t know why I have a hard time remembering it anyway… depending on how important I think it is, I guess.

So, muscles still hurting a lot I’m going back on the AIP diet… FULL-ON! None of this “mostly” stuff I’ve been doing. It’s the biggest hope I have. Yes, I want Beignets, Croissants, ice cream sandwiches, Ooo… breads… but I will never get out of this hole. The doctors we see? They can only do so much. I have to be responsible and do what I can. Oh, gawd, that’s bitter. I’m not excited at all. There’s just no discussion… has to be done. And I’m doing it!

And then I got COVID-19. The last person in the world I thought would get this… has gotten it.

I have COVID-19.

Okay. It started Friday night (after writing my blog in the morning), then it was just super sensitive skin (I get this when I have the cold or flu). Saturday and every day thereafter I awake with violent chills and shaking. My low grade temp was around 99.8 all weekend and pretty much remained around there. Headache, super sore muscles, short of breath, tight chest, extraordinary fatigue, runny nose, loss of appetite, and my vision impaired. Oh, and sleeping all the time!

I saw the Multicare Respiratory people and had a full eval and she said you have COVID. YOU HAVE IT. And we talked about all things COVID. So here I am on Wednesday (Happy St. Patrick’s Day) waking up with a 101.1 temp and shaking uncontrollably. Until the Tylenol does it’s thing and then I sweat until my hair looks like I just took a shower. I should be okay with at home management as long as my temp doesn’t get much higher… or my lungs freak.

Apparently, I joined the group of people who have COVID who are the majority. Only like 2% actually end up in the hospital. I didn’t realize that. I’m to treat this like any flu with OTC meds, and for me that means Tylenol, Mucinex, and a nasal spray… keep it all nice and MOIST! I just have to be on full watch as to what my lungs are doing. My lungs are sounding fairly clear right now in spite of getting so short of breath. We’ll hope we don’t go to the bad lung place.

Only me right? WTH… My diet plans are put off because so far the only thing I can eat is toast. I want to try some graham crackers later. It’s okay, I’m in quarantine for 2 weeks starting last Saturday.

I found this Ghandi quote online searching for something else. It means the world to me and I’m a great believer in our will. Um… please forgive any glaring errors or miss-words because my brains are just not all here… and it’s med time.

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Saying Goodbye to 2020…

Buh-bye! You know, be a duck and shake it off. I know nothing will change much out there in Covid-land anytime soon. And though I get tired of all the whining and jokes about 2020, I just have to say… it’s well deserved. But there’s some light at the end of MY tunnel at least.

I had two strokes this year, in January and February. I was in the hospital for the second one when the Covid outbreak began at the end of February. I watched it on the news and what was happening here in my very own Washington, and also in China. Who knew it would ever get this bad? I have to admit, I’m not too surprised though, our yearly flus and exceptionally bad outbreaks (like SARS) have been practice for this really big one. And it’s a strong virulent one that keeps adapting. Its only job is to survive. You learn a lot from virus-apocalypse-horror movies of which I’m an avid fan. One might chuckle here, but sadly (or frighteningly) fantasy has come to reality… again. Mother natures culling. And I don’t believe we’re near to being off the hook.

I digress… ahem, I was saying, I had two strokes at the beginning of the year that completely zapped my life for a good 10 months making my body go completely haywire. I think I’ve pretty much slayed that dragon with the exception of heightened Neuropathy. It’s a hold out but I think it’s going to get better- just needs more time.

The Christmas extravaganza brought a relapse into gluten. I enjoyed it immensely. Then cursed it as I was back on my cane again and hardly able to walk without it. I’m eating clean for 4 days again now and this is the first morning my cane has kept its station next to the bed. I may need it tonight (which is my worst time) but for now I think I’m good and the inflammation is coming back down.

Summary: I will soon be able to enjoy the activities of daily living. I have Rituxan infusions set up in January that should finish off the inflammation for me. This difficult and hard year has a chance to morph into something a little better. And if it doesn’t? I can do the morphing for myself. I have a resilient brain that way… I’ve proved it dozens of times.

My New Years Intention: To slay 2020 and make it SO MUCH BETTER!!!

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Everyone Is Now Living My Life

Okay, that’s not entirely true, but pretty close. Having RA and the meds that go along with it… plus Rituxan infusions, I AM IMMUNOCOMPROMISED. So what has that meant? Social distancing for years. Staying completely away from those that are sick for years. Using sanitizing wipes. Avoiding buttons, door nobs/levers, things people touch all the time… for years. Avoiding crowded places. Covid-19 is seriously a death threat to me. I’m mindful and careful. I had blood work done last week and used my cane to hit the automatic door button… behind me people laughed “why didn’t I think of that” and “novel use of your cane.” Yes, it’s amped up now to include masks and probably other things, but I’ve been doing this a long time now and you are now also here. Or, should be. I’m not saying I haven’t had my moments as we all have, but I am saying you learn a new way to live, mostly because you have to, and it’s okay. People who survive are the ones that adapt.

That aside.

On the diet front, the sad truth is (and I’m trying very hard not to look at it that way.. but at the moment I do) I find myself allergic/sensitive to SO many things. Truthfully, the Auto Immune Protocol diet is a life saver. Dairy products are now OUT! Most nuts OUT! Most grains OUT! Nightshades (except for potatoes) OUT! It’s been a challenge but I have found a lot of great recipes on my usual AIP websites that are really good. The longer I gather new ones gives me more arsenal as a means to avoid the dreaded relapse. Relapse is not fun because though I may relish and bask in the moment and hear the lovely singing of the choir of angels, there is the KNOWN resulting physical PAIN that occurs for about 4-5 days following. My gawd… it’s the shits. Honestly… sometimes though… sometimes… it’s worth it. Can you believe I just said that?! <sigh> WHAT IS THAT?! I must be stupid, hopefully I can grow out of that.

The biggest news: I had a “Virtual Visit” today with the Rheumatologist. For the FIRST time in 6+ years all of my labs were in normal limits. My inflammation is measurably down. I kid you not. AND, I’ve dropped completely 1 medication and on another dropped from 3 doses to one.

Whoa baby… this is good!

Smile On!

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Up… Down… Up… Okay, Up. Go!

Much has happened since my last post. I’ve seen my Ophthalmologist and based on that had to see the Neurologist again. The Eye Guy said the visual disturbances I was having was not an ocular migraine but that he believed blood was not getting to my brain properly. Hmm…

I was seeing the Neurologist because my Factor 8 clotting factor was off the scale. We checked it again, it’s still high, but because there is zero history of venous clotting issues and I tend to bleed a lot post IV pokes, biopsies, infusions, etc. She’s not worried. This is good! No blood thinners. Yay! She just doesn’t know what to think about the visual stuff (which, by the way, were quite geometric and colorful, psychedilic actually). If I have more problems she’ll reevaluate. They looked kind of like this only a full half circle in both eye independently. The bold black like was neon yellow, this happened twice.

We went over the stroke again. Here is what she believes happened. I had a fall quite awhile back, year and a half, two years? Anywhom… I hit my neck really hard falling into the bathtub… backward and HARD! She believes this was the initial trauma to my neck that started a very slow bleed in my right vertebral artery.

That slow bleed backed up with cells and other stuff and started building up and blocking off until a clot formed that occluded the entire artery. Quiet stroke #1 in January, serious stroke in February.

I’m doing really well post stroke though. I’m lucky. I have been having a hellacious time though with my body- neuropathy, fibromyalgia, RA, all were screaming pretty loudly since the stroke. I was pretty depressed about all of this pain!

Ever the optimist, though, I decided to do some research and decided to not just go gluten-free, but go all out and do the AIP diet. I felt like I was trying to save myself, a last ditch effort. I talked about this in my last post. So, August 15th I started on a few day bone broth fast and started the diet. I had to buy a lot of strange new shit… stuff, real health food stuff. But I wanted to go all out and do it right!

Almost by the end of 2 weeks I could actually see the inflammation leaving my face. I looked different. I shed 5 pounds. The very uneven toned facial skin seemed to be more even, complexion nicer. I didn’t use my cane at all around the house. It stayed next to my bed. My neuropathy and RA had vastly improved. AT TWO WEEKS! The best part??? – my stomach and gut didn’t hurt… and I was eating vegetables that used to send me into massive discomfort. <whispering> I’m having the first normal poops in years! Hey, it’s a gut healing diet!

So then what happened?

I relapsed!

I know exactly what happened. A few days before I was getting so hungry, wanting and needing some comfort food. I did my due diligence and went to main health site I was using who suggested when this happens to eat more starchy vegetables like sweet potatoes, squash… I did. And then… then those donuts were right in front of me. Later I made mashed potatoes, and the next day I had half a sandwich! Schneikies!

Aight, ‘den. <sigh> I’m back on it. I decided when things get really rough I’m going to make tapioca pudding with coconut milk. Did you know tapioca came from cassava? A tuber. Mind blown. I can also use a little monkfruit to sweeten just a tad.

It’s also true, you know, now that I have this awareness I can fight off the urge. I’m also going to start a food journal. I know, I know, some of you are surprised I’m not doing that already. Well… I’m a little slow. This is the food tracking page I’m going to use. And it’s also the website that I go to first. There are several others I look at too, but this is the ONE! https://autoimmunewellness.com/the-role-of-tracking-on-the-autoimmune-wellness-journey/

I persevere.

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Picking Up The Mantle

Making change. It’s time. A 6-year cancer survivor and life has been hell since, medically speaking. Hell. HELL! The last year and a half… doubly so…

That said, I’m feeling a bit better and it’s time now to choose a better life… again. I’ve done this so many times I can’t count them. It’s all good though, we have to do this sometimes. It’s really more like saving my life because something has to change with the path I’m on. I keep getting medically accosted and I’m just tired of it. So, I will do what I can with what has, and what will come along. I had so many plans at the start of the year that all crumbled because of 2 strokes. It all got pretty dark for me for awhile. I’m doing better with tiny lingering after affects from the strokes that are acceptable if they stick around.

I have to work on plysical strength. I have to heal my stomach (the microbiome is a mess) and do what I can to lower the inflammation in my body. Is this even possible? I have zero idea, but it’s worth a shot at trying. I have nothing to lose and a lot to gain. So there it is.

I just completed my two Rituxan infusions and began a bone broth fast on Saturday the 15th. So, as those B-Immune cells are croaking within me, I’m also cleaning out the system & gut. This will continue with the Autoimmune Protocol diet.

I’ve been gluten-free many times but never on the AIP diet. I’m going to do that after a few day fast. I’m trying to gather recipes for the 30-day recommended protocol. Those are weird, okay? They are. We’ll see how I do. I will do my best. I’m likely to be more simple in my approach… don’t need to do complicated recipes (I can’t stand all that long anyway). I’m not too fearful of not being able to stick with it, but, variety is nice, and it’s needed so I WILL be trying a few new recipes.

I wear written declarations of commitment in a tiny prayer box, along with St. Raphael (He hung out with me during cancer and the long treatment). I have always liked amulets for focus.

I’m also hoping these changes help my brain a little, I’ve had some serious moments of forgetting and speaking. The speaking issue has been infrequent – that’s good! The forgetting… ah… I haven’t a clue how to even finish this line.

Wish me well, I’ll let you know how I do with this!

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Stroke~Sleep, Fatigue, RA & Fibromyalgia Mash-Up

This is mostly for my seester, and others who want to know…

I have tried to do this for over a week… possibly two… can’t remember. Pretty sure it’s two. I’m staying home, staying safe… except for various doctor visits. “The Team” that was going to review my MRIs, CT Scans, and hospital visit from my stroke stay did so. I met with one of them and a Cerebral Angiogram ensued. They found the right vertebral artery was completely obliterated on the right side. Gone. Nonexistent. But, the human body in its vast wisdom and desire to survive opened up the left artery to work for both. It’s open and clear with no clots, no plaque, a completely open pathway to supply blood to my brain. It stepped up and took over for both. Yay left vertebral artery!

I had a little bit of a hard time with the angiogram… it’s so hard to lie flat for hours with RA and fibromyalgia. That was on April 24th. I haven’t been able to walk easily since. I’m much more dependent on my cane and my left-hand hurts worse because of it. Let me be clear~

Pain. I’ve never hurt so bad. I thought this was all RA or Fibro. No. Did some research and found:

“Let’s start with some basic definitions. Central pain is due to an injury in the central nervous system (brain or spinal cord). Any pain that occurs in the peripheral nervous system (anywhere along the nerves) is peripheral pain. “If you crush your arm in an accident, you are at risk of developing severe peripheral neuropathic or nerve pain,” said Richard Harvey, medical director of the Center for Stroke Rehabilitation at the Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago). “If you have a stroke or a spinal cord injury, you may develop central pain. https://strokeconnection.strokeassociation.org/Spring-2017/When-Survivors-Are-Hurting-Understanding-Post-Stroke-Pain/

There it is. Explanation.

That aside, then there is the incredible sleepiness and naps that block out a huge part of the day. I never sleep less than 4 hours during the day and sleep fine all night. Those naps? I could sleep much longer if I didn’t have some sort of sense. And it’s weird because it’s like my body just shuts off. Shuts right down and I have to lay down before I fall down. This has happened since the stroke and usually about 2 times a week. Again, found this:

“Stroke survivors often experience the symptom of excessive daytime sleepiness (EDS) in the early poststroke phase. The estimated prevalence rate of EDS in stroke survivors ranges between 18% and 72%, depending on the method used to measure EDS and the type of stroke. Despite the wide range of estimated prevalence, there is an agreement that poststroke EDS may persist and become a chronic problem in 34% of stroke survivors and continue for at least 6 months after stroke. EDS affects a stroke survivor’s daytime functional performance, lowers overall well-being, and impacts cognitive functioning. It is also an independent risk factor for stroke and contributes to an increased number of driving and industrial accidents”       https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6344831/

EDS, who knew?

Life has been altered. I try so hard to move forward and move in spite of myself. I’m so tired though (those of you who know me know all the shit I’ve endured and risen above). Today I’m tired and weary… but I may be laughing hysterically from kitty vids in an hour. I love DailyOM and have downloaded 2 classes to start on Monday, maybe Tuesday (haha). The point is… I haven’t yet given up or gone under. Just trying to push through. (Yawn)

 

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