Category Archives: Tapering off stroids

Dear Anonymous…

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…

 

 

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

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:

  1. 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).
  2. Tenderness (I say tenderness it was pain!) in each of the temple areas of my head.  It actually hurt to “touch” my temples!
  3. 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?
  4. 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!
  5. 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.
  6. 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.
  7. 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?
  8. The range of movement in my neck was and still is noticeably reduced.  Makes driving tricky and definitely no footy or rugby for me!
  9. 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.

  1. 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.
  2. 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.
  3.   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.
  4. 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?”

  1. 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.
  2.  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!
  3. 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.
  4. 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.
  5. 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!

  1. 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. .
  2. 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.
  3. 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.

  1. 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.
  2.  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.
  3. 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.
  4.   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.

  1. Indigestion
  2. Brain fog
  3. Extreme fatigue
  4. Lack of appetite
  5. Dry skin
  6. Inability to focus/concentrate
  7. Constipation
  8. Bloating
  9. Blurry vision
  10. Hand and leg cramps
  11. Stuffed nose
  12. Short tempered
  13. Confusion
  14. Feelings of isolation
  15. Diarrhoea
  16. Runny nose
  17. Vulnerability
  18. Unwanted facial hair (Is there any other kind?) 
  19. Insomnia
  20. Dry, split nails
  21. Back fat (nice!)
  22. Constant dry cough
  23. Thinned skinned (literally)
  24. Easily bruised
  25. Breathlessness
  26. Loss of vocabulary
  27. Lethargy
  28. Moon Face
  29. Low grade temperature
  30. Lack of stamina
  31. Memory issues
  32. Overwhelming sadness (sometimes)
  33. Dry, cracked fingertips
  34. 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

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

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.