The Real Chronic Illness Problem – “I’m Fine”

I will be honest, I debated writing this post because I feel that my opinion isn’t popular but I feel like it needs to be said, it needs to be heard.

I am sure it can be confusing when you know someone like me, someone with a chronic illness.  I don’t mean the normal confusing things like, “what is it exactly that you have again?”, because let’s both be honest here, you’re never going to remember all of our diagnoses (yes, there are more than just the one).

The real problem so many of us who live in the world of chronic illness face is one we bring about ourselves.  Let me repeat that, we bring about the real problem we face ourselves.  We have no one to blame but ourselves.  In communities and groups, post after post, it’s all there in black and white.  “They don’t understand”.  Of course you don’t understand, we convince you that “we’re fine”!

How can you even begin to understand what we’re going through when we are constantly trying to convince you that “we’re fine”.  Deep down, if we were brutally honest with ourselves and with you, we’d probably be sobbing, asking for a just a little relief, some semblance of normalcy to our life…but instead what comes out is, “I’m fine”.  Why?  Simple…guilt, pride or shame…take your pick, 99.9% of the time, it’s one of the three.

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I’ll try to make this relatable.  Well, let’s think about it, you don’t usually go into a big spiel about how you hate your job or how your car has broken down or that you argued with your teenager yet again this morning.  Why?  Honestly, you don’t want anyone to know that you argued with your teenager or that your car broke down.  You especially don’t want them to know how much you hate your job.  Mostly, you assume no one wants to hear it.  So you usually answer, “Fine” when someone asks you how you’re doing.  See…we’re not so different.

Just like I don’t go into how my hip-joint just dislodged a bit and I need to go hobble my way to the restroom and see if I can pop it back while wincing as quietly as possible.  No one wants to hear that!  I simply say, “Oh yeah, fine. I just need to use the restroom” and hobble my way to the ladies room, do what I have to do, take some pain medication and semi-hobble back.  Good as new!  Well, good as I can be!

Why don’t I tell the people I am with that my hip is acting up?  Shame, basically it boils down to embarrassment.  There will either be questions or odd looks followed with a smile and shaking of the head up and down.  Neither are pleasant for me and it is just easier to say I have to use the restroom.  I am guilty of this all the time.  I didn’t say I didn’t do it, I said it is the REAL problem those of us with chronic illness face, and we do it to ourselves.

So, what are we supposed to do?  Hell, I don’t know…if I had the answer to that, I’d probably be the next Noble Peace Prize winner, okay maybe not.  What I do know is that compassion never hurt anybody!

Compassion and understanding…for everyone, not just for us Spoonies, I mean why not?  Try using it on everyone, but especially those of us with chronic illness, don’t forget about us!  We fight against ourselves and our own bodies every day.  A Spoonie coming across someone with a little compassion and understanding is like coming across an angel on earth!  It truly is!  Don’t believe me, try it on one of us.  That compassionate act just might brighten someone’s entire week!

As much as I’ve tried to explain, I don’t have any expectation or judgment of anyone who doesn’t understand what it is like to live with chronic illness and chronic pain on a daily basis.  I simply ask for a little compassion and understanding when you see us out and about, that’s all.  Especially give your compassion and understanding to a Spoonie if they’re a loved one.  I know it’s difficult, we can be pains-in-the-asses (it’s the pain talking – pun intended).  Just know that there is more to us than what you see and we hide our pain for many reasons, but ultimately to avoid guilt and shame or to protect our pride.

I know that my existence is quite different from that of someone who is not chronically ill, so if you have any questions, feel free to contact me.  I will be more than happy to share all I can.  I think those of us with chronic illness and pain need to be more open and honest with those who are not.  It would also be nice if the favor was returned!  We are not as fragile as some think we are.  There are a lot who would crumble under the pain we carry daily, that takes a lot of strength!

Lastly, to the people who think that I don’t look or act “sick enough,” I have no apologies for you. I’m doing my absolute best I can in this life – you should too.

 

 

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Apologies, Excuses and Ramblings

So I am sitting here once again in front of my laptop with my coffee (also with my phone opened to Pokémon Go, only level 3 currently) beating myself up for not posting more regularly.  I know as a semi-well-rounded woman in her 40’s that I have every right to be pissed off at myself.  That is what makes it worse.  You know when you brow beat yourself knowing that you had way too high of expectations to begin with, that you shouldn’t be mad at yourself, but yet you’re kicking your own ass anyway?  Yeah, well this isn’t one of those times.

Then of course comes the excuses…I need quiet to be able to focus on writing (no, I really do)!  Quiet in my house is a joke!  Even if I’m home alone, my little darling Shih Tzu thinks that it his sole purpose in life to bark at anything that moves!  Then you have the flares…I have had so many flares lately, I should be fucking glowing bright red and sat along side the road!  I used to love summer but now I just dread it.  I live for spring and fall…those are the only two seasons that somewhat give me a break.  Sometimes winter if I don’t venture outside for weeks at a time – which I have done!

Bella & Bear

Going back to my Shih Tzu for a minute, he thinks he is this big furious bear (which he is appropriately named Bear) but the minute you light off a firework, you’d think he was going to have a heart attack!  He shivers and pants and won’t leave my side or my lap for anything!  If I do have to leave the house, I have to have one of the kids watch him so he doesn’t die while I’m gone.  He also freaks out if you have a certain ringtone or clip your nails or run the vacuum, but fireworks are really the only thing that makes him shake and pant.  So for the week leading up to the 4th of July and the week after, I am pretty busy holding a Shih Tzu like a baby – forget about writing!

We also have Bella our bulldog, but nothing gets to her except getting a bath.  She really doesn’t enjoy those at all!  And food, if there is food around, she will whine until you give her some.  It’s quite comical actually, that is until she’s been doing it for a half an hour.  She’s quite persistent!  Here’s a little video of her doing just that… Bella Being A Big Baby

Then of course, we have the kids who are always coming and going.  Between the two of us, John and I have 5 kids – all from previous relationships/marriages.  We are one boy shy of a Brady Bunch!  He has a daughter who is 24 and a son who is 19.  I have two daughters, 22 and 19 and a son who is 17.  The three youngest live at home with us full-time, so we have two 19-year-olds and a 17-year-old coming and going every day.  That’s enough to make your head spin, but I love it – most of the time!

TOP LEFT: Connor & Cameron (John & my sons)  MIDDLE LEFT: Courtney & Cameron (My youngest daughter & son)  BOTTOM LEFT: Becky & Courtney (My oldest & youngest daughter)  TOP RIGHT: Austin & Samantha (John’s son & her boyfriend)  BOTTOM RIGHT: Becky & Zack (My oldest daughter & her boyfriend)

So as you can see, even though I can’t work anymore…there is hardly a dull moment around here.  This isn’t even including the reptile collection that we have that require attention daily.  Yep, we have snakes and reptiles too!  I’ll have to post about them another time.  I am getting a bit drained from trying to get this out today – because I promised myself I would!  So, hopefully you can all forgive me and continue to hang out and look for more random posts from me.  Don’t forget to subscribe, follow, stalk me online, whatever you have to do – so when I kick myself in the butt again, you don’t miss it!

 

Breaking and Being Okay

Let’s be honest here, the truly worst part about having a chronic illness is how it can break you at times.  I mean it breaks you literally, physically, mentally and emotionally…totally breaks you.  The crazy thing about that is, you can go through so much day in and day out and be pretty okay, considering.  Somehow you manage to get through it all. 

Then one day, when caught off guard, a moment of flared up pain can unleash so much raw emotion and silent struggle that has been protected so carefully, that it literally takes your breath away and chokes you, forcing you to just lay there bawling, leaving a messy mixture of snot and tears running down your face, choking on air and pride while you curse yourself for allowing anyone to see that.  That is, if anyone did. 

And if someone did happen to witness your little breaking moment, even if they’re being super supportive and a shoulder to cry on, offering a roll of paper towels because you’re beyond tissues; you’re determined more than ever that you’re okay!  You’re fine!  You just had a moment of weakness and it’s passed.  You’ve just had a flare up and it’ll be okay…really.

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See, here’s another crazy thing about this… If someone wasn’t in the room when that raw emotion and silent struggle comes pouring out of you in a rare moment of weakness…you lay there, cursing yourself wishing someone was there!  Anyone, so maybe someone would understand just a little of how your chronic pain is affecting you or maybe they could just hold you for a little while you lay there and sob.  You know there’s really no possible way for them to understand, but it’d be nice to have a shoulder for a little while. 

But you also know that shoulder or no shoulder, you will pick yourself up, get that roll of paper towels and be okay another day because that’s what we do.  We have our moments where we have to let it out but once in awhile, it is really nice to know that others are there on the floor, on the bed, on the couch, with us because they understand and have been where we are.

If you ever need a virtual shoulder…you know where to find me!

I’m Going To Post Regularly…My Second Biggest Lie

Well it’s only been five months since my last post, not nine months like the time before that.  Hell, you would’ve thought I went on Maternity Leave or something!  Hopefully this decrease in time becomes a trend and the gap in between my posts continue to decrease. One can only hope, well hope and actually work toward this goal!

I can’t believe I left you guys on such a cliffhanger in my last post though… How horrible of me!  But instead of dwelling on that, Let’s Recap, where did I leave off in my world of limited spoons?  Oh yes, my MRI/uterine mass and John’s accident at the Christmas party!

First on the list…

While having an MRI done on my lumbar spine they discovered a “mass” on my uterus.  I was then promptly sent for a pap and vaginal exam and after that scheduled for an ultrasound/consult because they suspected uterine/cervical cancer.  After experiencing a cervical biopsy without any anesthesia at all (which I don’t recommend by the way), it turns out I don’t have uterine or cervical cancer, thank goodness!

They did however do an endometrial ablation because the lining of my uterus was abnormally thick.  This procedure aims to destroy the lining by using scalding hot water to burn the lining of your uterus and at the very least, makes it very thin if it’s abnormally thick like mine, sounds fun right?  Not really, but it isn’t as horrible as it sounds.  I was very grateful that I was under general anesthesia for this procedure however!

A few days of horrific cramping at home after and that is about it for recovery.  You do have to deal with the aftermath of attempting to destroy the lining of your uterus however, and it is not pretty!  Weeks, yes…I said weeks of a period-like state (I can’t really describe it here and you really wouldn’t want me to) and then you pray to whatever higher power you believe in that you don’t have to deal with Aunt Flow ever again.  Well, my higher power must think that I suck because I still get a friendly visit from my Aunt but she doesn’t stay as long and isn’t nearly so obnoxious anymore.  So maybe I only suck a little bit.

Next on the list…

John, my boyfriend, had collapsed at a Christmas party with no warning.  He had been drinking but was not heavily intoxicated. We were actually getting ready to call an Uber when he collapsed.  He actually collapsed twice.  As most men, it was because he was stubborn.  The first time he collapsed, he regained consciousness pretty quickly and wanted to stand up.  We all advised against it, but here’s where the stubbornness kicked in and he stood up anyway.  You guessed it, he went right back down, like a sack of potatoes actually.

Anyway, he ended up with bleeding in the subarachnoid space, which is the area between the brain and tissues that cover the brain, like a small aneurism.  That’s some pretty scary stuff and after two days and countless tests, they didn’t have any answers for us.  They didn’t know if the fall caused the bleeding, by hitting his head twice, which I highly doubt.  He was fine, talking one minute, paused, his eyes rolled in back of his head and down he went!

The good news is that if it was a small aneurism that caused him to lose consciousness and the bleeding, it didn’t leave any residual effects or damage that they could find; and they did 3 CT scans in 2 days.  So we were cautiously sent home with a very long list of instructions.

Since the original incident, he hasn’t had another episode and all the cardiologists and neurologists have released him to his full range of activities including driving.  They even did a series of sleep studies on him at home.  I didn’t know they could do that!  This, I guess is the difference between having insurance and not having insurance.

So yeah, I think that brings everything up to speed from where I left you poor guys hanging a long five months ago!!  Jesus, what is wrong with me!?  And not one of you lovely people left me a nasty message during that time.  Those who did send me a message were concerned about how John was doing and how I was, not one nasty message about why there were no recent posts.  You guys are the best really!  What did I do to deserve such amazing readers?…you’re really the best!

I can promise you I have been working on some new stuff for the blog – and no, it’s not just the boring “what is going on in my life” stuff.  So keep watching and I’m sure to be ranting and raving or singing praises about something soon!!


LATEST NEWS: My youngest daughter that started her first year of college at Indiana University in the fall is now home for the summer! YAY!

 

Dancing Through The Storm

So we meet again!  It’s been way too long since I’ve posted.  I am sure all of my fellow spoonies know all too well, there are many things that keep us from doing the things we love…so there’s no sense going into all of it.  However, I will update you a little on what has been going on with me lately.

Last month I had to go for an MRI because my lower back pain has been worse than the normal smattering of pain here and there.  It is painful all the time now.  So during this month’s visit at my pain specialist, I was informed that the MRI did in fact show another herniated disc that is pushing against my spinal cord, but also that a “mass” that was found in my uterus.

I was then sent to an OBGYN where they did a pap test and vaginal exam.  They also scheduled me for an ultrasound next week and then a consult to go over all the findings the same day.  It was a little nerve racking sitting in his office hearing words like cervical cancer or uterine cancer.  Honestly, I just heard cancer.  So, now we just wait and see what comes back next Wednesday.  I’m hoping to hear the word fibroid or benign.

In between the MRI results and my OBGYN visit, my boyfriend collapsed at a Christmas open house and had to go to the hospital by ambulance.  After spending two days in the hospital running tests and monitoring his vitals, they don’t know what caused him to pass out.  They did find bleeding within the subarachnoid space, which is the area between the brain and the tissues that cover the brain.  They don’t know if the hemorrhage caused him to collapse, like a small aneurism, or the bleeding happened due to injuring his head when he passed out.

See, when he passed out the first time, he came to and decided he was fine and stood up.  He should have listened to all of us there and stayed on the floor because he immediately passed out again and hit his head, again.  I really can’t fault him for standing up though because he doesn’t remember a thing until he “woke up” in the ambulance.  His entire first day in the hospital is still a little fuzzy to him.

He’s now home and is off work for a week and can’t drive for a month.  They have him on a heart monitor to make sure he isn’t having cardiac arrhythmia or any other anomalies.  He’ll also have to have another CT scan in the next week or so to ensure that the bleed in his brain is healing up on it’s own.

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So…that has just been the month!  The previous nine months have been fairly similar, just not as overwhelming…thank goodness!  I honestly cannot fathom how someone posts regularly when they are battling a chronic illness and have a family.  For me, it’s just a lot with two grown kids, two kids in college (one four hours away and one still at home) and homeschooling my 17 year old.  We have also sort of started a small reptile zoo in our home, not to mention our two dogs.  I’ll have to post about that soon!  Honestly, there are times I am lucky to get a shower regularly, see Shower Confessions.

Right now we are trying to get through Christmas and even a healthy person can have challenges doing this!  I am just praying for it to be over quite frankly.  We don’t even have the tree up yet.  Hopefully we’ll have it up this weekend.  My step-son and I are going to pick her up my daughter at IU today, so I’m sure she’ll want to help doing that.

I will have to be more diligent in keeping up with my blog this year…guess that’s my New Year’s Resolution!

Happy Holidays everyone!