“I’m as mad as hell, and I’m not gonna take this anymore!”

April 25, 2018Uncategorizedmamici1

Like Howard Beale, I too am mad as hell!

mad as hell

Yes, I know you’re sick to death of my incessant rantings against the unfairness of life, growing old and of being sick!

Tough shite.

Again, (and this means you too “Anonymous”) if you don’t like it, don’t read it!

I get that my tirades are becoming boring and empty and that nobody really fucking cares anymore… if they truly ever did. Whatever; that doesn’t stop my need to… “NO,” my obligation to speak out.

“Choosing with integrity means finding ways to speak up that honour your reality, and the reality of others… ” ~ Terry Tempest Williams

Like it or not, this is my freakin reality. I didn’t ask for it! I don’t want it… but “it” is my life now, I have no choice; I’m obliged to speak my truth!

I don’t rant just for me… I rant for all of the others as well; the others that you (you who are fortunate enough to be healthy and well) don’t know anything about! Please don’t misunderstand, I don’t criticise you… I used to be YOU!

Now… I’m with them. I’m with the ones who sit, by themselves, on a couch and suffer in silence; the ones diagnosed with some weird, obscure, auto-immune disease that nobody’s ever heard of and that has since turned their lives into a living HELL.

For all you know one of them could be your kid’s “frail” teacher, your “A-hole” boss, or that co-worker who’s always taking time off of work.

There are a lot of us out there who don’t want to be “a bother,” or any “trouble” to our family or friends. All of us who, when asked, “How do you feel?” will always respond, “Fine, I’m fine…”

The poor suckers, like me, who were unlucky enough to roll out of bed, one ordinary morning and have the god-damned day turn out to be ANYTHING, but ordinary!

I speak for them… you want to know why? Because some of them, are too sick, tired, frustrated and fed up to speak for themselves. They’ve been beaten down, by a relentless disease that kicks their ass 24 hours a day, 7 days a week, every month, for years!

Some of them have just stopped trying.

They’ve stopped trying to explain to you, that they are not lazy. They are not seeking attention. It’s not all their head. They know adopting a more positive attitude, won’t really change a damn thing.

When they’ve told you they were “exhausted,” they meant that they were physically, mentally and emotionally unable to connect with any reality, in any real or pleasurable way. They were spent, depleted, drained, emptied, burnt out, unable to connect.

Did you hear them? Did you listen?

Many of them, who have been stuck in this cyclone of shit, for a very long time… feel that you don’t hear them anymore or that you even care… so why should they bother to speak at all. Better to save their energy for more important things.

When you say things to us, like;

“You don’t look sick,”

“Maybe if you just go outside and get some fresh air, you’d feel better…”

“Yes, I hear ya… I’m exhausted too.”

“Maybe you just need more exercise?”

“It will get better… I’m sure… just push through it.”

“Have you tried….”

…please know, (and I say this ever so gently… ) we want to kill you!

We never would of course, but please know, NONE of these things is remotely helpful or productive.

We have a devastating, destructive, debilitating disease.

Auto-immune diseases are as “real” as a heart attack! They are as real as cancer, asthma, diabetes, COPD, cystic fibrosis, heart disease, Parkinson’s… and all the rest! Just because you can’t see the disability and we’re not represented by a distinguishable symbol like a trendy “Pink Ribbon,” or a cool, coloured, silicone bracelet… doesn’t mean our pain and our struggle isn’t real.

These diseases destroy lives. They come out of nowhere, grab you by the ass; eat you up and spit you out. Your life is irreparably changed.

It’s difficult to pin down the current global statistics, but the National Institutes of Health (NIH) estimates up to 23.5 million Americans suffer from autoimmune diseases. That’s only Americans and the NIH numbers only include 24 diseases. Many auto-immune website say there are over 80 different auto-immune related diseases!

That’s a lot of fucking sick people!

We’re out here.

And hopefully we are (in much greater numbers) becoming mad as hell and not going to take it anymore!

I have fantasies of a REVOLUTION; a revolution where people impacted by devastating auto-immune diseases like Polymyalgia Rheumatica (PMR) and Giant Cell Arteritis (GCA) demand to be heard! A revolution where our GPs and Rheumatologists are forced to take us and our symptoms seriously! A revolution where drug companies are encouraged and incented to look for better, more effective medications to treat and alleviate our diseases symptoms. A revolution where we’re not embarrassed or uncomfortable to openly talk about our disease, and we don’t automatically just make light of it to ease tensions.

A revolution where we have our own immediately, recognisable symbol or brightly, coloured bracelet.

Perhaps even a slogan?

How about…

Autoimmune disorders: “Yes, even your body hates you!”

the worst thing

“My Rheumy Rocks”

April 19, 2018Aging, GCA, Health, PMR & GCA, Rheumatology, self assessment, steroids, Uncategorizedmamici1

838-02489616

Yesterday, I saw my Rheumatologist, for the first time, as an NHS patient.

Okay, so maybe the surroundings weren’t as upscale as they were at Brighton’s Montefiore Hospital where I had seen her three times previously. I wasn’t offered coffee or tea, as I checked in at Reception, and the standing room only, Waiting Room did smell a bit like old newspapers and perspiration (not mine!), but “HEY!” the building was built in 1828 and I wasn’t going to be asked to pay £155 for this appointment, so for me…

“It was all good.”

She only made me wait maybe 10 minutes over, my scheduled appointment time; which is about the same length of time, I had waited previously, as a Private Patient. Her examination room was about the same size; it was clean and orderly and appeared to have everything she’d need to treat patients; a working computer, an examination table, with a sanitary paper roll, a privacy curtain, cabinets filled with lots of “medical” looking odds and sods. So, check, check, check.

So far, so good.

I had printed out my daily “How I Felt Today” journal (because, “Yes,” I’m a bit OCD), and I knew it would allow her to see (at a glance) what’s been going with me, since I tapered to 50 mg and then to 45 mg. It included all the normal entries you’d expect from someone who has GCA & PMR and who’s been on high dose of steroids for 5 months;

chest and upper back aching
heavy arms & legs
exhausted
not sleeping
fatigued
feel “high”
felt good
jittery
no energy
arms and legs tingling and numb
tinnitus more pronounced
still feel tingling/numbness in feet
felt shite
arms and legs feel like baby centipedes walking around under my skin
slept 9 hours
numbness and tingling in feet, worse; feet feel freezing, but warm to touch
right knee swollen, hurts like hell, cant extend or bend; GP thinks it’s a Baker’s cyst?
aches across back; shoulder-blade to shoulder-blade
had to take a nap for 1st time is a few months! WTF?

She didn’t seem too alarmed by anything she read… She mentioned that I was still on “high doses” of steroids and a lot of what I was experiencing were either the dreaded “side effects” of Prednisolone or the equally dreaded “withdrawal symptoms,” from the Prednisolone.

Apparently it’s a lose, lose scenario; damned if you do… damned if you don’t.

She did however, notice the “swollen, non-functioning right knee,” which kind of surprised me, as I didn’t think that would be her area of interest or expertise.

Although… come to think of it, it may have actually been my 5′ 10″ rubenesque frame; wearing a black & white tee-shirt, printed with the word, “QUEEN,” (meant to depict my status, not the Band) across my (too old to be appreciated big bosomed) chest, as I did kind of lurch into her exam room… That may be what got her attention, but I’m not sure.

My GP had said that she thought “it” (the uncomfortable, giant, lump behind my right knee) was a “Bakers Cyst,” and she had ordered an Ultra Sound, back in early March. However, that appointment hasn’t come through yet.

That is one thing about the NHS; you won’t pay, but you will wait!

Here in the South East, especially in a highly populated area like Brighton, the government cuts have crippled our beloved NHS. Our Doctor’s, Nurses and Admin Staff are overworked and under paid. There aren’t enough hours in the day to service the multitude of people needing care and/or procedures. Our NHS Staff are stretched beyond capacity and are continually being asked to DO MORE WITH LESS. It’s heartbreaking.

“Would you like me to take a look at the knee,” she offered.

“Sure,” I said, having no idea what to expect, but thinking “…isn’t she a Rheumatologist?”

Before I knew it, I had dropped my trousers, and she was pushing, prodding and commenting on the inordinate amount of fluid she was seeing and feeling! She seemed intrigued.

I heard her say, “Do you want me to inject a little cortisone in there?

“Ummmmmmmm, sure,” I responded, with not a lot of conviction.

Again… before I had time to reconsider, she was spraying a cold numbing agent on my knee, and before it had barely touched my skin, she thrust in what appeared to be a HUGE needle (it could have been a Turkey baster); in any case it looked to be something they might use to inject cortisone into an elephant’s knee!

“Let’s just take some of that fluid out first, shall we?”

“Owwwwwwwwww! Okay!”

As she used her left hand to (not so gently) knead the fluid into the area where she had stabbed me with the turkey baster; while she used her right hand to manipulate its sucking functionality; carefully she coaxed the whitish/yellow/brownish liquid into the elephant syringe!

While she did this, she made sounds like, “Hmmmmm, and “Ahhhh,” and used words like “…viscid, gummy, syrupy.”

What the hell was happening???

I was at the rheumatologist’s office, not an orthopedic surgeon’s office!

Several minutes, and three viles of yucky liquid later, it was time to inject the cortisone. Thank goodness, at this point I was in shock and feeling no pain, so this part was a piece of cake!

Before I knew it, I was pulling up my jeans and wondering what had just happened?

I hobbled back to her deck and was told to rest the knee for the rest of the day and to ice it. Okay… that’s sorted! Now, back to the business of PMR/GCA.

As we sat at her desk, she told me she was writing up a NHS referral for an Electromyography (aka EMG). This test will provide information about the muscles and nerves in my feet and hopefully explain the pain, freezing cold sensation, and numbness. She does not think it is related to the PMR/GCA, or that it is a side effect of being on Prednisolone.

So, “Wooooooo Hooooo,” it appears I may another, totally unrelated medical condition to have to manage and follow-up on! …but cool, the suspected peripheral neuropathy, is on its way to getting sorted or at least identified.

She then wrote up another referral for a CTPA (a CAT Scan of the chest); requesting an “old school” contrast dye, that does not contain iodine. This was ordered previously, under insurance, but was canceled when they realised the iodine contrast dye could put me into anaphylactic shock! Okay, cool again, the constant cough, intermittent chest pain/pressure and palpitations on their way to getting sorted or at least identified/discounted.

Rheumy wants to see me to stick with the proposed taper down plan, see her again in 4 months, have my blood checked by GP every three months and she assured me that I “might” just start feeling like myself again, after I hit 20 mg a day…. that will be in August.

It’s going to be a long, hot summer.

My Rheumatologist may be a woman of few words, but she is all “action.” I totally appreciate this. She is knowledgable, decisive and confident; she doesn’t waste time waiting for things like ultra-sound scans, when she can see and feel an obvious painful, fluid build-up, surrounding a knee!

If you recall, I had had reservations about her practice a few months ago. Her Admin was a quite snippy and condescending to me over the holiday’s when I was scared, had concerns and needed medical advice about my newly diagnosed PMR/GCA finding. Luckily, I have not had to deal with the Admin since and my Rheumy has proved herself to be “one of the good ones!”

I consider myself very fortunate, because I have read the horror stories about Rheumatologists who believe they “walk on water,” or the ones that “know better than their patients,” about what’s going on with them.” It’s a mind-field out there and thoese of us under the NHS, don’t necessarily get to see the specialist we’d like to see. For the most part you go where you are directed to go.

So I have deemed today, “LOVE YOUR RHEUMATOLOGIST DAY,” (but only if you truly do!) i love my rheumy

Dear Anonymous…

April 16, 2018Aging, autoimmune, Depression, GCA, Health, illness, PMR, PMR & GCA, self assessment, steroids, Tapering off stroids, Writingmamici1

fuck you

Is that “magnificent” enough for you?

You recently left feedback on my blog site that said:

“Hey, you used to write magnificent, but the last few posts have been kinda boring? I miss your tremendous writings. Past few posts are just a bit out of track! come on!”

“Fair enough,” I thought!

The feedback was much appreciated and I actually went back to you, straight away, asking specific questions; trying to get a better idea of what you thought had changed and how I might turn things around.

Was it the subject matter?

Was it the fact that I may have lost some of my anger?

Which posts did you think were really good, verses which ones not so good?

You made your penetrating observation on April 14th at 7:25 am; I responded on April 14th at 7:27 am. I’m thinking, you were probably still on-line when I responded! It’s now April 16th and still nothing from you… Is that really all I’m going to get?

No additional words of wisdom? No tried and true blueprint for “How to be a Better Writer,” or cunning tricks of the trade, teaching me how to “Grab Your Reader?”

Well, you’ve let me down.

And by the way… what’s with the “Anonymous” anyway? Did you have to change your User Name or create a whole new profile, just to leave that feedback for me, or are you always Anonymous?

Does using that label allow you the anonymity you need and give you the balls to say what you think, without really putting yourself out there? Does it provide just the right amount of refuge, so that you feel empowered to speak your mind, but not vulnerable and exposed to any comeback you might receive?

Look… I really do apologise that you have found my blog posts “boring,” of late. It may have something to do with the fact that my life is fucking boring!

Think about it…

I go nowhere.

I do nothing.

I see no one.

Not sure how much you know about what having a chronic illness is like… but I gotta tell ya, it’s not fun, interesting or entertaining in any way. You don’t get to turn it on and off, at will. You don’t get to control the extent to which you will or will not be impacted by it.

It “controls” you.

It violently seizes you, by the back of the head, pushes you to your knees and tells you to get on with it… You don’t get to bargain or negotiate.

It tells you when, it tells you where and it tells you for how long.

You just submit.

So yeah, I guess if a few of my posts were “… just a bit out of track,” I may have been a little preoccupied getting fucked by one of my two, chronic, auto-immune illnesses. Or perhaps it was from the vile side effects caused by the toxic corticosteroids I’m taking; or the obscene withdrawal symptoms I experience, every time I reduce my dosage.

Oh… and just so you know, I don’t write for anyone but myself!

I write to get all the anger, fear and resentment out of my head, so that I don’t end up imploding! If you read it and like it, I’m happy with that. If you read it and you don’t like it; well, I’m sorry my words didn’t resonate with you. Maybe next time.

I will suggest to you that if you want to give someone “constructive” feedback, you might want to follow through. Providing vague, half-assed, glib gibberish is not helpful. It’s a waste of your time and it’s a waste of my time.

You want me to “…come on,” well give me something I can sink my teeth into.

You know “magnificent?”

You miss “tremendous?”

Then, please, by all means, point the way…

“Un mal pour un bien”

March 23, 2018autoimmune, Death and dying, GCA, Health, illness, PMR & GCA, self assessment, Uncategorizedmamici1

toilet 2

“The most beautiful peonies I ever saw… were grown in almost pure cat excrement” ~Paul Proteus, Player Piano

Is it just me, or have you noticed that whenever something truly awful happens in your life, and you think to yourself, “There is no way I’m going to survive this;” you not only end up surviving the dreadful circumstance, you ultimately bloom and flourish, because of it?

The horrible thing still happened, you still had to deal with it, and you had to fight like hell to make your way through to the other side, but at some point down the line, you realise… that if that god-awful thing had not happened, you would not have;

learned that invaluable lesson
had that epiphany
made that life changing decision
met that amazing person
had that/those incredible experience(s)

Here’s an example… I was stuck in an unhappy marriage. (Well, to be honest, it wasn’t the first time.. but that’s another story!) It was my second time around and now I had two children! I was miserable, but there was no way I was going to get divorced (again) and put my children through that! They needed a Mother, a Father and a “real family,” regardless of how miserable we all were! (Yes, I hear it now… but, believe me at the time, it made perfect sense!)

I was in my mid thirties and I believed I could hold this facade together for the next 14-15 years; and then once the kids were grown and gone… well, you get it.

So this one day, I received a call from my Dad (which thinking about it now, some 28 years later, was odd, because Dad never called!). He called to tell me my Mom had been to the doctor and there was a “spot on her lung.” They were pretty sure “it was cancer” and the next step was to speak with an “Oncology Surgeon.”

In those few minutes, my entire world… everything I had ever believed in and trusted, came crashing down around on top of me. There was no way I (or probably Mom, for that matter) would survive this.

To make a long story, less long…. Mom had surgery; we were told they “got it all.” They hadn’t. Three months later it turned up in her brain and another surgery was scheduled. Several months after she had recuperated from brain surgery, it showed up again in another part of her brain… we scheduled another surgery.

How many surgeries can we ask this woman to undergo?

In the 20+ months from my Mom’s diagnoses to her death, she and I became closer than we had ever been. And being her only daughter (and obviously her favourite) we were pretty close to begin with!

When I visited with Mom, we had “quality time together; shopping, talking, eating cakes and drinking tea, laughing, me painting her finger and toe nails… we talked about anything and everything. Neither of us, holding anything back (Well, to be honest, I did hold some things back. I had to or she would have died of a heart attack right there and then!)

So this one day, as we’re taking about my unhappy marriage… and she tells me, straight out that she does “not like my husband” and that actually… she has not liked him since “day one!”

Wait what?

My Mom had always been absolutely lovely to my husband. Kind, generous, polite. I didn’t have a clue that she felt this way! As she spoke she used words like, “don’t trust him,” “something wrong there,” “never liked him.”

WOW! Who knew?

I told her my plan to stick it out until the girls were grown and she was visibly displeased.

Right there and then, from her death-bed, she gave me a at least 101 reasons for NOT STICKING IT OUT! She said I needed listen to my heart and do what was best for “ME.” She explained that my girls would be fine as long as I was happy and at peace with myself. She insisted they would adjust, they’d adapt and they’d be fine.

She further explained (and quite poignantly I might add) that “life is short,” and none of us are “guaranteed anything.” She talked about her life and some of her regrets… and as I sat there, listening to this amazing, 69-year-old woman, siting in her death-bed, bestowing all this wisdom and honesty on me… I had that epiphany!

I realised she was 100% right!

Life was to freakin short and my kids would be fine! It hit me like a ton of bricks, that living the next 14-15 years, miserably (and supposedly “for the sake of my kids”) was not a viable option! It was stupid! It wasn’t good for them and it wasn’t good for me.

Mom died.

We buried her… and within a few months I found my voice and told my husband it was over and asked him to move out!

I have NEVER looked back.

The point is that in those 20+ months, of living hell, I died a thousand deaths. I did not think I would survive the loss of my Mom. Not mentally, emotionally, or physically, but I did.

Truth is, not only did I survive, I actually came out the other side stronger, tougher and more independent than I ever had been (albeit motherless), but if I could survive that… hell, divorce was going to be a piece of cake!

Out of something horrific, came something awesome.

It happened again when my brother Charlie was diagnosed with Pancreatic cancer. I was so distraught by his illness and undeniable upcoming death, I had what can only be described as a mini nervous break down. I suffered from “complex grief” and pretty much lost control of my life. After a few years of “coming apart at the seams,” it finally hit me… again!

Life is too fucking short!

I needed to get off my ass and live the life Charlie would have lived, if he had been given that opportunity; because he sure in hell wouldn’t be sitting around feeling sorry for himself! He’s be living life!

I told work I would not be able to take on that all important, gazillion dollar, global project, that I knew would ultimately “kill me.” My husband and I decided we needed BIG changes in our life; so we picked up all of our crap and we moved to England!

Hey, when only about 64% of American’s even have a passport, picking up and moving to a foreign country (even if it is an English-speaking country) was pretty freaking fierce! Charlie would have been proud!

It was the best decision I ever made… well after that divorce decision actually. Ummm, the second divorce…. well the first divorce was a good decision too. Oh, never mind!

In the last 8 years my husband and I have travelled throughout Europe, taken wonderful road trips across England, met some fabulous people (who have become good friends), seen sights I never (in a million years) expected to see and I have realised, that my life is so much richer and fuller than it ever would have been, had we stayed in South Florida.

Again, out of something bad…

It’s happened again and again, throughout my life.

More recently, I’ve been plagued with these two dreadful auto-immune diseases and they’re kicking my ass!

They are unbearable, atrocious, insufferable, oppressive and so much MORE! .. BUT (and as you see that’s a BIG BUT!) in the last 4 months, since being diagnosed I have:

started to understand that I need to love and take care of myself, first,
learned that I have a “creative” side,
discovered that I may have a panache for writing (something I LOVE to do),
learned to rest and relax
felt unconditional love from family and friends,
virtually, met MANY amazing, knowledgable, informed people, who are in the “same boat” as me,
discovered that some people think I’m entertaining and dare I say “funny,”
found a voice inside me that has NOTHING to do with Project Management!
learned that it’s okay to say “no” and not give a reason,
found the strength to speak my mind (okay I may have had that one!)
slowed down enough to really “hear” another person’s story

The list could go on and on.

So now, I’m in a quandary… do the benefits, that I’ve gained from having these detestable diseases… possibly outweigh (or at least equal) the disadvantages I have experienced from having them?

I know it sounds radical, absurd, ridiculous, really!

….but wouldn’t it be dishonest of me not to, at least, ask the question?

“Head to Toe” – A layperson’s Guide to the Signs and Symptoms of PMR/GCA; and the Possible Side Effects of High Dose Steroids

March 18, 2018Aging, autoimmune, Death and dying, Depression, GCA, Health, illness, PMR & GCA, self assessment, steroids, Tapering off stroids, Uncategorizedmamici1

head to toe

First, let me start by saying, I am by no means a PMR/GCA “expert.”

There are many people who have had one (or both) of these rheumatic conditions, for a lot longer than I have; and have dealt with and managed their symptoms and side effects more effectively and courageously.

However, for a PMR/GCA “Newbie,” this blog post might prove to be a helpful (and humorous) look at what you MIGHT encounter on your journey.

And, please know, this is very much YOUR journey!

If I have learned anything in the past four months (124 days, 7 hours and approx 36 minutes) it is that PMR & GCA are NOT one size fits all!

They manifest in (and affect) each of us, quite differently. There are, of course some very standard signs and symptoms, but there are also some very unique, individual oddities that cannot be discounted or just shrugged off as not being important.

Here, in this amateur, lighthearted, but hopefully relevant Guide (and I use that term loosely!) you will find some symptoms of PMR and GCA, side effects of being on high dose steroids, steroid withdrawal symptoms, along with some of the other physical, mental, and emotional manifestations that I encountered on my journey, thus far.

It is often impossible for me to differentiate a disease symptom, from a steroid side effect, from a steroid withdrawal symptom, from a non-related PMR/GCA ache or pain… I guess what I’m trying to say, is that I cannot tell you, what’s what. All I know is that I feel like crap most of the time and just have to deal with it.

My Rheumatologist struggles to separate “what’s what” as well! She believes, that after my being on high doses of steroids for 4 months, I’m experiencing some of steroid’s worst side effects. And since I have also been “actively” tapering down (I’m down from 80 mg to 50 mg), she says I’m suffering from steroid withdrawal too! Oh, I almost forgot… it has also been suggested (by another Rheumatologist) that my body is actually resistant to steroids!!!! So, ain’t that a bitch!

Some of what I write may resonate with you… much of it may not.

That’s okay.

What’s important is that you are made aware of the many possibilities that you may encounter on your journey.

“Knowing Is Half the Battle.” ~ G.I. Joe

Head (neck and shoulders)

head and shoulder

Ahhhhh, the head! My journey began with a diagnosis of GCA, in November 2017, so my head was my primary complaint.

My immediate symptoms included:

A sudden and intense, bilateral headache (more painful on the left side, than on the right) This lasted for 19 days (and 18 horrible nights).
Tenderness (I say tenderness it was pain!) in each of the temple areas of my head. It actually hurt to “touch” my temples!
Sharp, stabbing pains all over my head, that would come and go. On the left.. on the right… in the back… behind my eyes. Ouch!!!! WTF?
Excruciating pain, where the bottom of my skull met with my neck/spine. It hurt more when I tried to look up; the pain became crippling!
Bilateral pain in my neck! Literally a pain in the neck! It was like a bad strain or muscle ache; it felt like I had overdone it, with some heavy lifting. It started just below my ears and radiated down into the tops of my shoulders.
I also noticed my eyes weren’t focusing as quickly as they normally did; when I removed my reading glasses, it would take few moments for my eyes to adjust and focus.
Since the initial onset, I sometimes have had difficulties lifting my arms, as my shoulders are just too weak! What’s up with that? I can hear my brain telling my shoulders to lift my arms; and my shoulders recognise the command, but they just don’t have the strength to lift the arms! How weird is that?
The range of movement in my neck was and still is noticeably reduced. Makes driving tricky and definitely no footy or rugby for me!
My tinnitus became much more noticeable and bothersome after the initial “headache from hell” began. It’s always there and occasionally plays up and becomes even more annoying than usual.

Upper Back (and arms)

body 1 (1)

In the 19 days, between the sudden onset of the headache and me actually going to the GP… (Yes, I realise that was stupid, but in my defense, I did visit my Osteopath, three times! He was sure he understood the problem and could fix it. Not!) I developed odd aches and pains in my back and arms.

I developed a “heaviness” between my shoulder blades. Not a pain per say, but a heavy, achy feeling across the top of my back. I still get it today; it’s an annoying ache that radiates into the shoulders and down into the upper arms.
My arms felt like thick, heavy lead pipes, that have been screwed into my rigid shoulders, and tightened into place with rusty screws. Simple tasks like lifting grocery bags and changing the sheets was (and sometimes till is) impossible for me.
In the beginning, my triceps ached, all the time. It felt like I had over-exercised them at the gym… I wish. Now that ache comes only occasionally, and when it does, it stops me from doing simple household chores.
Stiff elbows? You know you have stiff elbows, when you can’t extend your arm out straight!

Torso (and miscellaneous other areas)

torso

“Excuse me… Is there an elephant sitting on my chest?”

There’s a “heaviness” across my chest, as well as my back. This ache feels like “pressure,” like there’s an elephant stepping on my chest! The ache goes from shoulder to shoulder, across my collar bones. It’s feels like I’m having difficulty breathing, although I don’t really think I really am.
Heart palpitations are fun, right? Noooooooo! Especially if you have a Mitral Valve Prolapse (MVP) and already take a Beta Blocker to control the palpitations. I can be sitting on the couch, relaxing, watching TV and my heart starts doing the Cha Cha Cha, in double time!
Not in the torso area, but I have a weird taste in my mouth, all the time… No matter how much mouth wash I use or how many times a day I brush my teeth, I have an odd (not pleasant) taste in my mouth!! Yuck.
My teeth ache! Not just one or two teeth and not all at the same time… but at some point within the last 4 months, each one of my teeth has HURT like hell!!!! I have been to the dentist twice and x-rays say there is no problem with any of my teeth, so it is more than likely nerve pain; perhaps from reduced blood flow, but nobody is 100% sure.
My hands (not even close to my torso, sorry!) get cramps so badly that they actually become DEFORMED. The muscle, in the hand, under the baby finger, collapses into the side of the palm; pushing the baby finger and ring finger out away from the other fingers. It also causes them to bend into the palm, like Dupuytren’s Contracture. Very attractive!

Hips (buttocks and hamstrings)

glutes 1

I literally have a pain in my butt!

My buttocks ache. It’s usually one side or the other , thank goodness it’s usually not both at once! However, I must say, it hurts like hell and it’s annoying. I have difficulty walking when this particular pain kicks in and I feel like I’m 100 years old. .
The pain in my butt, actually radiates down into my hamstrings… and it feels like “sciatica” (if you’re old enough to know what that pain feels like) It feels like nerve pain, but with muscle ache twist.
My hips get tight and stiff. It’s hard to walk and it makes getting up off the couch almost impossible without assistance. (Yeah, that’s fun, having to ask your husband, who is 10 years younger than you, to help you get up from the couch! Not awkward at all!)

Thighs (calves and feet)

legs1

I was diagnosed with GCA first, but it has been agreed by two Rheumy’s and a GP, that I have probably had PMR for at least 24+ months prior to the GCA diagnosis. Unfortunately, the PMR went undiagnosed because, my GP at the time, did not “connect the dots,” and believed that I was experiencing normal aches, pains, stiffness and malaise associated with “women of a certain age.” Needless to say, he is no longer my GP.

My thighs ache relentlessly. I realised, after the PMR diagnoses, that my thighs have ached for years! The pain usually started at the end of the day, when I sat down to relax, my thighs would ache. It still happened today, just not as often.
I get cramps in my calves. They hurt, but they are not the same as the “deforming” cramps that I get in my hands, thank goodness! A warm bath usually resolves them and I have recently started taking Magnesium, which is said to help.
My feet get stiff and numb. Not numb like when they’re cold… more of a warm, tingling, numb feeling. I can feel them, but they just feel weird and tingly.
My legs, in general, sometimes feel like large, tree trunks. They’re heavy, rigid, and feel like they’re swollen twice their normal size. They’re not of course, but that’s what it feels like. I shuffle around, dragging them along, like The Hunchback of Notre-Dame. Maybe a slight exaggeration, but only slight.

Other Physical, Mental and Emotional Impacts

mind

The list of physical, mental and emotional symptoms grows everyday… the symptoms come and go. However, I never really know what’s related to the auto-immune diseases, the steroids, and/or the withdrawal from the steroids! And of course, there’s always a possibly that whatever I am experiencing is actually fueled by my lack of physical activity, lack of social interaction, isolation, depression, anxiety, etc, etc, etc. and not actually related to any of the above!

Here is a list of the physical, mental and/or emotional symptoms I have experienced in the last four months. What has caused them specifically, I do not know… Some I still struggle with, while others are gone, at least for now.

Indigestion
Brain fog
Extreme fatigue
Lack of appetite
Dry skin
Inability to focus/concentrate
Constipation
Bloating
Blurry vision
Hand and leg cramps
Stuffed nose
Short tempered
Confusion
Feelings of isolation
Diarrhoea
Runny nose
Vulnerability
Unwanted facial hair (Is there any other kind?)
Insomnia
Dry, split nails
Back fat (nice!)
Constant dry cough
Thinned skinned (literally)
Easily bruised
Breathlessness
Loss of vocabulary
Lethargy
Moon Face
Low grade temperature
Lack of stamina
Memory issues
Overwhelming sadness (sometimes)
Dry, cracked fingertips
Lack of interest in most everything…

I could go on, but I won’t… it’s too depressing!

Don’t despair… this too shall pass!

We will get through this! Remember these diseases are thought to “run their course,” within a few years to several years. And some people will be lucky and get through it in even less time! Yeah, sure, many of us will be dependant on corticosteroids for several years, but hey, it could be worse right? And it’s a helluva lot better than the alternative.

Look, there’s no getting around it, having PMR and/or GCA sucks big time! It does!!!

And having both together is just a cruel and insidious, ruse of nature! …but the stress we create by trying to fight an impossible, invisible battle, only weakens us further and make matters worse! We need to stop fighting and start accepting.

We must somehow learn to graciously accept what is being given to us and try to understand the lesson the Universe is trying to teach us.

Namaste

Thinned Skinned, Moon Faced, Bloated and Down in the Dumps

March 8, 2018Uncategorizedmamici1

Nude Woman with Necklace 1968 by Pablo Picasso 1881-1973 — Nude Woman with Necklace 1968 Pablo Picasso 1881-1973 Purchased 1983 http://www.tate.org.uk/art/work/T03670

Let me be the first to say (so that you don’t feel obliged to) I have the tendency to feel and sometimes express, the very human emotion, of vanity.

I don’t think this necessarily makes me a bad or totally shallow person… maybe just a bit of a cliché. It’s not vanity in the sense that I believe it’s overly unhealthy or self-destructive… but more of an honest, evaluative, examination of my physical self. One that is usually humorous and a perhaps a little self-deprecating.

Okay… so maybe, a little bit unhealthy.

I think it may stem from the era I grew up in, as I was right on the cusp of the “Fab 50’s,” and the “Turbulent 60s.”

Women’s perceptions of themselves were changing at warp speed and as a young girl of 12-13, it was hard for me to keep up with what my perceptions, about myself, were “supposed” to be.

My early 1960’s role models (mostly the “wanna-be-girlfriends” of my two older brothers) were all about “looks.” Pointy boobs, tight sweaters, lots of make-up, tiny waists, no opinion and BIG HAIR! They chased after both of my handsome brothers, continuously. And I had an endless supply of 15-16 year old girls, who wanted to be my “big sister.” Oh yeah, sure, their motives were about as pure as “yellow snow,” but I got taken downtown and out for ice-cream, in exchange for some innocent information about who might be calling/coming to my house.

As I got older (15-16) and grew bored with my high school classmates, because we didn’t seem to have a lot in common. {I was interested in the politics, the Vietnam War and social injustices, oh, yes, and smoking pot; many of them were more interested in shopping, dating the most popular jock and what to wear to the football game, Friday night}.

I sought out, older, more well-rounded and cerebral, women of substance. I found them them and they were fabulous! They were awe-inspiring, intelligent, insightful and innovative… but if I’m totally honest, they were also almost as insecure as the rest us.

It makes total sense, really!

They were the “trailblazers,” single handily trying to change America’s chauvinistic, stereotypical, perceptions about women while (they themselves, still quite young) were grappling with their own self-confidence, sexuality, body image issues, desirability and their ultimate value to society. (Regardless of the radical social changes taking place in our country, they were still expected to get married and have children… soon!

It was all new. Cutting edge. There was no rulebook. We all played it by ear.

I exited that wonderful, crazy, exciting, chaotic time… and came out the other side with an incredible sense of self; a strong, capable mind, an independent, fearless spirit and overall a pretty self-sufficient, self-confident woman!

I, like many of my “sisters” however… still looked in the mirror with a critical eye. One that I would never wholly abandon.

If you’re not there yet, you will find that growing older (especially if you’re a women) will present you with a whole host of distinctive and contradictory conundrums! It’s a freakin battlefield, filled with the undetonated warheads of our sisters, who came before us.

I won’t go into the detail here, as I have written about it previously… (Well, of course I’ve written about it!!!!) the inevitable, invisibility that we as women face in our “golden” years. If you’re so inclined, you will find that particular rant, HERE

…but as if growing older weren’t hard enough, growing older with one (or in my case two!) auto-immune diseases (that are running rampant through your body; while the only treatment option available is slowly, but surely poisoning you!) is complete and absolute, bollocks!

We are forced, to helplessly watch, as everyday something else fails or deteriorates.

We try not to be critical. Tell ourselves, “Beauty’s only skin deep,” “All that glitters is not gold,” “Appearances are deceptive,” “This is only temporary.” etc. but all the time knowing (KNOWING) that our very own body, is totally fucking us over!

POW! BANG! KA BOOM! ZAP! BLAM! …you can almost hear the thrashing as it takes place!

A virtual, acquaintance (whom I am just getting to know, but already admire and respect) recently summed it up like this;

“…but as women conditioned to be hyper aware of our appearances (and to internalize a lot of negatives about getting or being old (in a youth oriented and hyper-sexualised world) we cannot ever be completely immune to how we think we “‘look” or “should “look.”

It is so true.

No matter how hard we try (or how old we get) I doubt we will ever be entirely free from that “evaluative, examination of our physical self.” It’s inbred in us and constantly reinforced by society.

We will forever look into that mirror and find fault with something… maybe it’s that thin skin that breaks open and bruises, oh, so easily. Perhaps it’s that big ol “moon face,” that appears to be laughing at us, from the other side of the mirror; or maybe it’s the fact that many of us can’t see our toes anymore, because of our severely bloated “roid” bellies.

Whatever it is… let’s acknowledge it and then (try to) let it go, because as she said “we cannot ever be completely immune to how we think we “‘look” or “should “look.” … but we can take away its power by simply recognizing it and releasing it into the universe.

On this, Thursday, March 8th, International Women’s Day 2018 let’s give ourselves a break, let’s just for today, be happy with who and what we are and bask in fact that we know the world is so much better off because of all of us!

Namaste.

Should I Be Making More of an Effort?

March 1, 2018Aging, Death and dying, Depression, GCA, Health, PMR & GCA, self assessment, steroids, Uncategorizedmamici1

Is it just me… or do you find yourself purposefully avoiding social interactions?

Since November (or the “Apocalypse,” as I like to call it) I’ve noticed that I dodge more and more social exchanges, especially those that are “face to face.”

In the beginning, I honestly didn’t have the energy or the strength to socialise. I was totally drained physically, mentally and emotionally. It seemed every day I developed a whole new appreciation of what the term “feeling like shit” actually felt like.

There were flu-like symptoms, aches and pains, extreme fatigue, sore and inflamed muscles, insomnia. OH, and that God awful, never-ending, paralysing HEADACHE! What was up with that?

The exhaustion was crippling. I could have “Slept for England!” Although, I didn’t sleep at night, mind you! Oh no… I was a “Day Sleeper!” I was down when I should have been up, and up when I should have been down.

However, here I am, 108 days (2592 hours) later, into this Senior Tweak Out from hell… and I think I may just be feeling a smidgen more mellow than I was, way back when.

Not much mind you!!! …but a smidgen.

Slowly tapering the steroids, from 80 mg, to 75 mg, to 70 mg… down now to 55 mg, has provided just enough time and space, for some of my “rough” edges to melt away.

{“What was that?” Oh, it’s just the quick, jerking movement of my husband’s head shaking vehemently, back and forth… }

So as of late, I no longer feel as though I’m hanging onto “Dear Life,” with these weak, dry, brittle, fingernails! The jittery, restless, edgy (and not edgy in a good way) feeble, old woman… is feeling more hope than dread these days.

Where there was once angst, there is now a cautious calmness. The perpetual feeling of being antsy, has been replaced with a casual nonchalance.

So the question stands… should I be making more of an effort?

You see, I have become very comfortable and quite content, being alone, in the house, sitting on the couch, in my bathrobe, drinking buckets of tea, writing self-indulgent blog posts, perusing the healthunlocked.com website and (get this!) working on a quirky art project (more on that later!)

I’m not at all inclined to initiate a lunch or coffee date with friends. I don’t reach out and call people, who I used to talk to regularly. I have a “pile” of unanswered correspondence that needs to be addressed, and I must admit I don’t even look at my phone when it rings. *she says red faced*

I’ve become a recluse. Let’s say it together… “H o w a r d H u g h e s”

Soooo, I can’t help but ask, is this acceptable behaviour for an otherwise healthy, used-to-be-social, 63 year old, extraverted, woman with what is now a old, boring, mundane illness?

Right after the Apocalypse, began, in November, I saw the following on Facebook:

To protect my energy it’s ok to cancel a commitment.

To protect my energy it’s okay to take a day off.

To protect my energy it’s okay to not answer that call.

To protect my energy it’s okay to not share myself.

To protect my energy it’s okay to do nothing.

To protect my energy it’s okay to be alone.

To protect my energy it’s okay to speak up.

To protect my energy it’s okay to move on.

To protect my energy it’s okay to let go.

To protect my energy it’s okay to change.

To protect my energy it’s okay to say NO.

Believe me when I tell you, this became my mantra. I was not going to do ANYTHING I did not feel like doing. If the gods had seen fit to strike me down, in the prime of my life *ahem* with a horrible, unfair, chronic illness; then by golly, it was now going to be all about me!

And fair enough!

Except now… I’m not 100% sure my motives are as pure.

Is it really about my energy, or is it about my big, old, fat, moon face? Am I protecting my inner child, or am I hiding these dry, cracked, bleeding stumps, that some people might call hands? Am I shielding my fragile, healing soul, or concealing my newly developed “roid gut.”

I can only imagine that you’re as horrified reading these questions, as I am embarrassed, asking them! …but ask I must!

Have I been fooling myself (and YOU) all along? Have I bamboozled all of us into believing that I have even the slightest modicum of depth? Integrity? Authenticity? Insight?

Or am I (as it would now seem) the most shallow, narcissistic, vain, shell of an old, pathetic women; who’s actually been avoiding social contact because she has not come to grips with the physical transformation her diseases have given rise to?

WTF? Are you kidding me?

Well.. this weighty topic, obviously requires more analysis, so we will all just have to be fucking patient, while I try and figure this shit out!

She May Be a Monster, but She’s My Monster

February 27, 2018Aging, Death and dying, Depression, GCA, Health, PMR & GCA, steroids, Tapering off stroids, Uncategorizedmamici1

me an GCA

Image by Vorja Sánchez

I haven’t felt like “me” since the November 13th, 2017.

That was the last day I actually remember feeling well, healthy; when I last felt normal. Oh, I’ve had some good days since then, don’t get me wrong… but since that fateful day, things for me have felt a bit like the “Twilight Zone.”

Being on high doses of steroids is a double-edged sword! When you take them, you have to contend with wicked side effects. If you don’t take them, you have to withstand the crippling symptoms of your illness.

It’s Hobson’s choice really.

Just for context, I have only been on as little as 45 mg per day (and I thought I would die!) and on as much as 80 mg per day (and I thought I would die!), since November.

Once you start taking corticosteroids you’re hooked. You’re pretty much a junkie, except I doubt that the high is comparable. And once you start, you can’t just stop! If you want to get off them, you need to put an elaborate “taper down” plan in place and execute it very slowly, over a period of time. And even then, you’re probably going to experience some level of “cold turkey,” withdrawal.

Also, and this is not a well-known medical fact, but true nonetheless, once you start taking high dose steroids you spawn your very own, internal lusus naturae! It’s like this “mini me,” monster thingy, that spontaneously grows inside of you. And with whom you quickly develop a unique, and peculiar, love/hate relationship!

For me, she kind of just appeared one day out of nowhere. I saw her, streaking through the house, out of the corner of my eye. Wide eyed and frantic, darting from room to room.

I soon became aware that she had somehow seized a pretty good-sized chunk of what had previously been ME… my being. My essence!

She had somehow replaced odd bits and pieces of what had been ME (for the past 63 years!) with odd bits and pieces of HER!

She is similar to me, but in a much more exaggerated, paranoid kind of way. She’s familiar, yet strange. Friendly, but distant. I have this odd sense that she and I have met before, but maybe that’s just déjà vu?

I get the distinct impression, she’s here for to stay… at least for a while.

From the beginning she’s been, shall we say… invasive. I fall asleep, she wakes me up at 2:00 am, wanting to play. I try to string a simple sentence together and she projects distracting, random images, inside my heard, making me lose my train of thought. She has an insatiable appetite and all she ever wants to do is EAT! When she’s not eating, she’s bitching about being “exhausted,” “fatigued,” “tired!” (Well. don’t get us up at 2:00am, I scream!) She has this maddening habit of distorting things… up becomes down, right becomes wrong, now becomes later, and nothing? Nothing always becomes SOMETHING!

However, even with all the chaos and upheaval she’s brought into my life… she has become my constant. My one unwavering friend. She is always here. Always watching. Always waiting in the wings. She never tires of my company.

She can be a bit judgemental and occasionally admonishes me, but it’s for my own good, I’m sure. She prevents me from being overly optimistic and gives me a more realistic and pragmatic perspective of things.

One enormous positive she’s brought with her (and has willingly shared with me) is a shaman-like inspiration and sense of creativity. I’ve always envied people who were able to get in touch with their creative side, as I’ve never been able to even see mine!

Until now…. until she arrived.

You see, the problem is, I am an analyst by nature. An Analyst is defined as an {annoying} person who studies the elements of something, often breaking it down into smaller {more tedious} parts {that nobody really cares about} to learn how the parts work together and what the nature is of the thing being studied. (And yes, it is as boring as it sounds!)

Whereas a creative! A creative is defined as a {magical} person with a never-ending, intense {burning} desire to produce {create, imagine, invent} based on originality {ingenuity} of thought, expression, etc.

Wow, right? Night and day.

Well… I truly believe that I have (and it definitely has something to do with her) begun a magical transformation to an opposite, parallel universe! A place where I (boring, ordinary, analytical, project manager ME!) am more imaginative and artsy, avant-garde and inspired, original and do I dare say relevant?

Un-freakin-believable, right?

However… this presents me with a bit of a Catch-22, a quandary, a riddle, wrapped inside a burrito!

She’s a cyclone! An unwanted, dangerous disturbance. She brings with her destruction and anarchy!

She obviously can’t stay… but I’m not quite sure I want her to go.

I find myself in a charmed, but hazardous, love/hate relationship with a wide-eyed, unpredictable, steroid fueled monster, who seems rather intent on taking over my very existence!

Yes, sure, okay… in exchange, she may continue to bestow upon me this magical, intoxicating, outflow of originality and creativity, but at what cost?

No she has got to go!!

However…

On the other hand… as she’s already here and she seems so very much at home and comfortable, what’s the harm, really?

I’m sure, as long as I keep her away from say bright lights, and I don’t get her wet and perhaps if I don’t feed her after midnight… what could possibly go wrong?

Right?

She may be a monster, but she’s my monster.

In Sickness and in Health

February 21, 2018Aging, Death and dying, Depression, GCA, Health, Uncategorizedmamici1

happy wedding.jpg

… yeah sure, but now this shit’s gettin real!

God knows I’ve bitched enough about how these two autoimmune diseases have impacted me, me, me, but there’s another player in the game, isn’t there?

Nineteen years ago, when my now husband (who, by the way is 10 years younger than me!) asked me to marry him, I said “No.” Why? Well, primarily because we were so inherently different! …but also because I was sure he would change his mind and want children of his own, one day and that just wasn’t happening.

I set the differences aside and he somehow managed to convince me that he definitely would not want children of his own; and I believed our biggest, potential issue was solved.

Ha! Little did I realise, that the ensuing years would shine a bright light on some other (perhaps not as significant) differences; i.e. our taste in music (Come on… how can you NOT like Bob Dylan?), the importance and impact of the Vietnam war on our social consciences (He was too young to eat his dinner glued to the CBS Evening News with Walter Cronkite), the significance (or in my opinion the triviality of) the sounds of the Second British Invasion (The Pretenders? Gary Newman? Squeeze? The Buggles? The Alan Parson’s Project?). Sure, these were annoying, but as I said insignificant.

However, even though we have identified a lot of “differences” between us in the past 21 years… it’s been 18 years of *Ahem* wedded bliss, so I guess we might be okay.

…with the exception of a teeny, tiny wedding vow.

During a Florida Civil Service wedding, the Notary say’s something like; “Blah, blah, blah… to be my husband/wife, blah, blah, blah, to have and to hold from this day forward, in sickness and in health, blah, blah, blah.”

I’m sure our wedding vows were pretty standard. The only thing I distinctly remember refusing to say was the bit about my promising to “obey,” because that would have been just an outright lie! (and the ceremony would have to have been stopped, because we both would have been laughing so hard!) …but we did sincerely make all the other vows.

I should stop here and clarify… before you go jumping to conclusions; my husband is totally fine with the vows. He has no problem with the “in sickness and in health” promise.

Even now, even though he is mentally, emotionally and to some extent physically shackled to me and my chronic illnesses from Satan’s anus; he is unruffled, nonchalant and unflappable!

For the past 100 days , he has been nothing, but gracious and kind, patient and understanding, loving and sweet. (Damn him… isn’t that just like him!!!) But that’s his MO. What did I expect? He is after all, Nick… Nick White. (In my head, I hear this in a deep, sexy, alluring, Daniel Craig as James Bond kind of voice).

No, it’s me… I’m the one whose freakin out!

I’m the one who can’t believe 19 years ago, I was worried about babies… (a decision which he never, ever regretted, by the way!) and it was me who questioned his limited musical taste and level of social consciousness! It was also me who never considered that my being 10 years older than him, could be a problem for us!

What was I thinking?

How could I not foresee that down the road, “I” might be our biggest hurdle to overcome? I totally missed that I could and probably would (just because I’m 10 years older than him) get sick and throw the poor, sweet, unsuspecting guy under the bus… leaving him stuck dealing with an old, sick, miserable, decrepit, woman!!!

It was like a train coming straight at me, but I never saw it!

I guess it was because I “felt” like I was the younger one. I arguably looked younger, acted younger, behaved younger… I think I actually believed I was younger!!!!

But alas… just look where we are now. The worst has happened! I have literally (and almost over night) morphed into that sick, miserable, decrepit, weak, frail, old woman!

WTF?

I cannot express to you how much I despise being dependent on anyone, for anything, i.e. asking for assistance, relying on other people, being vulnerable, needing someone, and accepting help. Sure, nobody likes it, but I truly (with every fiber of my being) HATE IT! It makes me crazy!

And yes, I recognise that this is a problem. I see myself go to great lengths to not accept help, not need anyone, not rely on others… to the point where I do this thing (that my Mom used to call “cutting off my nose to spite my face”) where I doggedly reject help or assistance, making any undertaking or situation much more difficult and sometimes impossible.

Yes, before you even ask; of course I’ve been royally screwed over by a man! A few of them actually.

So when I reached my late 20s early 30s, I swore to myself that I would become totally independent and self-sufficient. I worked hard and made damn sure I could take care of my girls and myself without any outside help or assistance, from anyone. I didn’t need a man for anything. I worked hard and built a tall, thick, strong, impenetrable wall and by God that wall has protected me and my girls ever since!

That was until Nick White, somehow managed to weasel his way into my black heart. Over the past 20+ years he has worked at deconstructing that wall, brick, by antiquated brick. Damn him! He has been committed, steadfast and true… just as his Father told me he would be, so many years ago.

He has been dedicated to me and my girls and despite his rather strong “disdain” for children, he has accepted and given love, kindness and wisdom to my daughters and to our three grandsons!

What’s his reward?

Here’s the kicker… the poor, unlucky bastard finds himself stuck in an intolerable situation, with ME, day in and day out! Not the fun, crazy, exciting, young at heart, spontaneous me. Ohhhhh, no, he’s stuck with the new “ME.” The cynical, cranky, old, tired, sick, negative “bi-yatch” on wheels, ME!

Never… never ever… did I want this to happen! I would rather die first (ex: cutting of nose to spite face!) Seriously, I would go gently into that good night rather than have my husband have to deal with this shit! Call it vanity, call it ego, chalk it up to my immaturity or my deep-rooted insecurities. I don’t care what you call it… it was NEVER supposed to go down like this.

I’m the CAREGIVER. I’m the one with the innate maternal instincts. It’s me who enjoys and is so fucking good at managing other people’s illnesses and in many cases their subsequent death! How did I end up in the bed?

Well… screw this!

Right here, right now, I set this wrong, right. For his sake and for my sanity, I hereby make a public decree; I go on record as saying that, “I set him free!” He is set free from this archaic wedding vow, free from all of them, if he wishes! He is hereby released from this living hell and free to “move about the cabin” of life without me as the ever heavy (and getting heavier every day) albatross around his neck.

Run Nick White… run far and run fast, while you still can! Get as far away from this Hell on earth, as you possibly can. Save yourself! Don’t look back! Don’t be like Lot’s wife… just get out while there is still life left in you!

… but as you run, know I will miss you and please also know…. you got closer than anyone else ever did.

Demons and Self Doubt

February 16, 2018Aging, Death and dying, Depression, GCA, Health, Uncategorizedmamici1

I was actually taken back, as I read the words that I had subconsciously typed. One by one, each word appeared on the screen and I read…

“I don’ think I can do this?”

It was last week when I read about a woman who has struggled with PMR for 4.5 years and had reduced her Prednisolone to 2.5 mg daily (just for context, I’m reduced to 65 mg daily!). After reading her story, I felt like I had been kicked in the teeth!

She was, understandably, feeling down and discouraged because she continues, after 4.5 years, to be plagued, by relentless, unyielding, debilitating fatigue. In her own words; “It feels like my gas tank is running on empty.”

My first thoughts were, “Wow, I can relate to this… I know about this crippling, perpetual, exhaustion!” And it was actually kind of cool, that here was someone else I could relate to; a kindred spirit, a compadre, a virtual friend who felt what I felt.

Then, I panicked. And from there I started to “freak out!”

I realised, “Hey, wait, I am only 90+ days into this nightmare! She’s been dealing with this for… WAIT, what? How long did she say? Did she say 4.5 years? WTF! Nooooo! No way… I can’t deal with this shit, for another 3 or 4 years!

Seriously! I don’t think I can do this!

Yeah, yeah, this is where you get to call me a Drama Queen, you get to call “bullshit” on me, you can snigger at what you think is my clever use of theatrics to try to write a more interesting story… I truly wish it were any one of those!

But really… I honestly do not know if I am strong enough, brave enough, tough enough, or if I have the fortitude to live like this for several years!

Did that word register with you? I said, “years!”

I’m already dangerously close to my “sell by date.” In 3 to 4 years, if I’m not literally “expired,” I’ll be past my sell by date. By the time I start to feel better and have worked my way though theses shitty autoimmune diseases, I’ll be on the wrong side of 67/68, with most likely an abundance of other “elderly” health related issues and quite possibly on my way out anyway!

So what now? I just accept this living hell for the next 2, 3 or 4 years… Only to get through to the other side and expire anyway, like a freaking quart of milk?

I wish I had the words (and the writing skills) to express just how paralysing and disabling these destructive diseases are. The continuous pain and the infinite and total exhaustion have to be inconceivable to someone who has not experienced it.

Imagine, for a moment, you. You’re thinking about completing one of the ordinary, mundane tasks that you might do on any given day; change the sheets, vacuum the floor, walk to the market, clean the bathroom, whatever.

Choose one.

Now picture yourself, completing that task. Notice that it has taken you twice as long to complete the task, because you’re breathless, you feel stiff and your arms and shoulders are refusing to do what you tell them to.

Now, feel yourself, very suddenly (as if someone has hit you over the head with a ton of bricks) consumed by an overwhelming feeling of utter and complete tiredness and a total lack of energy.

This isn’t any old tired… you are ready to drop, tired. Shattered, totally drained, knackered to the point that you MUST sit down or you will fall down.

You get to the couch and you collapse.

Maybe 45 minutes later, you realise you’ve just been sitting there; totally zoned out, staring at a lamp! You don’t know where the time went; you feel kind of numb and a little confused; and you realise that’s it. That’s you for the day. You are spent, cooked, done.

Let that sink in… All you have done, is change the fucking sheets!

You’ve changed those sheets a million time. You’ve done it without even being conscious of what you were doing. You’ve done it and moved onto five other chores without giving that particular task, a second a second thought, but not today.

Today, changing the sheets has beat you.

Changing the sheets has kicked your ass.

Changing the sheets has crushed you.

Sure, it may get better.

Maybe you’ll get to the point where you can do one or two chores a day before you crash and burn. Maybe you’ll go out for lunch with a friend; then it’ll be home for a nap. On a good day, maybe you’ll take the long walk to the grocery store; you’ll do the shopping, carry it home and make a nice dinner… but, you’ll most likely pay for it by spending the entire evening “recuperating” on the couch.

The agonising and undeniable truth here is that your life (MY LIFE!) has been irreparably changed, forever.

Things will never be as they were.

The best case scenario? Maybe I come out of this tailspin somewhat easily, with only minimal scars. Maybe the diseases settle down in 2-3 years and the symptoms subside; I’m able to get down to a tolerable dose of .5 or 1 mg a day; the side effects, of which, are minimal. I’ll be plagued by few if any “flares” and the pain and total lack of energy will be manageable. Maybe, I’m no longer a total loser sitting on the couch twiddling my thumbs, staring at lamps. Perhaps, I am once again a productive member of society!

From my mouth to God’s ears.

Between now and then… Yes, yes, I know, “there are a lot of people out there who are way worse of than me.” Yes, I get that I’m being a being “overly dramatic and a BIG BABY about this.” Obviously, “bitching and moaning is unbecoming and not at all attractive in any way!” “People hate whiners!” I understand this “is not the end of the world” and I should just “shut the hell up and suck it up.”

Yup, got it.

However…. as Evinda Lepins said: