Category Archives: autoimmune

Nothing Means Something and you Need to Worry!

suspision

You know how when you just know something’s going to happen, but you’re just sure exactly when it’s going to happen; and all you can do is sit around and wait?

It’s unnerving, right?

You keep looking over your shoulder, expecting to see one of Tony Sopranos’ hit men and you think you see him in the shadows, every few minutes, but you never really see an actual figure; just a vague shadow, that disappears into an imaginary mist.

Well, I keep waiting to “pay” for my big, bash, birthday weekend, but oddly, the debt hasn’t been called in… yet.  I’m sure I can feel Tony’s guys, lurking in the darkness, but so far, nothing.

It was a decadent weekend!

Well, I say decadent…  I guess it was maybe a tiny bit depraved, at least for this 64-year-old woman, with PMR/GCA, a bad knee and numb, tingling feet!

I was a wild women!  I ate all the bad things, I drank lots and lots of red wine, I walked 4.2 miles in one freakin day, I ran around London like a Swirling Dervish!

And now…  I wait.

I  thought Monday would begin with a “BANG,” however as I carefully opened one eye at time, and peeked around my bedroom, I felt surprisingly “okay.”  Hmmmm?  Strange.  I was however, shall we say, cautiously optimistic.

Maybe there was like a time delay, on these things…  I mean it’s “pay back,” right?  And they say, “Pay back is a Bitch,” so it’s not going to accommodate your schedule or your expectations!  It will make you pay back, when you least expect it!  That’s only fair.

For some reason on Monday, after this totally self-indulgent weekend, I began to notice just how filthy my house was!

WTF?  Who’s been cleaning my house for the last 6 months, a 100-year-old, blind person?

Now, you need to know I have ALWAYS kept an immaculate house!  Even when I worked full-time, between me and the cleaning lady, who came every 3 weeks, we kept that place spotless.  I blame it on the OCD…  “a place for everything, and everything in its place,” will be my epitaph.

Anyway, feeling kinda good, I went to town!  First the bathroom, then the kitchen…  then with energy to spare (Seriously, I had energy to spare!)  I vacuumed the whole house and washed the kitchen and hallway floors!

By about 3:00 I was tired, but like Phil Collins, I was not dead yet!  With the house in order, I laid on the couch and watched several episodes of  “The Good Fight,” and I waited…

Tuesday, saw a little less activity out of me, because I was sore, but surprisingly not PMR/GCA sore!   No, sore like I had done too much!  Walked too much, bent down to much, stretched too much, lifted too much, pushed too much, pulled too much… you name it, I did too much of it!

And here we are, today is Wednesday, and still nothing.  

Still sore, but not crippled by it.  Not overly tired or incapacitated by fatigue, although I did sleep straight through the night and slept 9 hours!  Even my bladder and I were on the same page last night, remarkable! None of the aches and pains, usually associated with my auto immune conditions, are rearing their ugly heads… yet.

Where I come from, nothing means something.  If you ask someone what’s wrong and they say “nothing,” you know it’s something.  If the kids are quite (acting like nothing’s going on) you know they’re up to NO GOOD!  If you ask your husband what he’s thinking about, and he say’s “nothing,”  ...no wait, that one’s probably true!  He’s most likely really not thinking about anything at all.

So, nothing happening, means something’s definitely coming.

I’m Italian-American.  Actually I’m Sicilian-Irish-American.  There’s a lot of innate  loyalty, duty, pride, tradition and honour (yeah, ok, maybe it’s that honour amongst  thieves kind of honour) oozing through my veins.  And although I may have my foibles, and oddities, I pay my dues. 

A deal is a deal. I would never renege on an unspoken “agreement.”  I had a legendary birthday celebration weekend and I’m ready to pay the piper.

So here I sit, with nothing happening.

Watching.

Waiting.

Looking over my shoulder.

Ready to meet Tony’s guys and pay my dues.

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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…

 

 

“Un mal pour un bien”

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

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