Milestones

It’s Been A Year

It’s been a year since I got the midday call from my dad on a Monday, that Mum was on her way back to the hospital.  This time for trouble breathing and subsequent low blood pressure and low heart  rate.

It’s been a year since the last time we laughed together. Watching Wheel of Fortune in the ICU, and laughing over her insistence that Nurse Steve was Doctor Steve, but if you asked him, he would say that he usually cleans the floors.  I went to the hospital after work, like I usually would do when she was admitted. Didn’t matter if it was Lawrence General or Brigham and Womens,  I would head in after work.  It got to be the norm, even if it was just for a half hour.  The plan was to get her temporary pace maker put in until they could stabilize her for the permanent pace maker the next day.

It’s been a year since my mother had to have her temporary pace maker put in . I went to the hospital after work as usual.  She was sedated when I got there from the surgery and the nurse said he was going to make sure she was comfortable .  We thought things were good, so we left for the night.

Its been a year since my sister Rachel and I went to dinner  after the hospital.  We went to Burtons in North Andover. We both got some sort of Thai bowl and substituted chicken instead of some sort of Tofu type product.  It was quite delish.  We ate, dinner was uneventful and we said our goodbyes for the evening .

It’s been a year since I got the call on rt 93 south right before the 128 split.  Rach said we needed to get back to the hospital now.  I flew off the highway and turned around and drove like a madwoman back to the hospital.  I remember I kept telling myself = ” As long as I am not there yet, she is still alive” Like it was a Schrodingers cat situation.  I just kept repeating it.

It’s been a year since I arrived at the hospital and found my dad in the parking lot.  We made our way inside to the ER since that was the only door that was open.  I was greeted by our friend/sister Andrea .  I will never forget the hug she gave me.  She wrapped herself around me and we held hands as we were escorted to the ICU.

It’s been a year since I felt the stinging of my tears as I walked the hall to the ICU to find my mother in shock.  I cannot shake the memory of it.  I remember her face and the events like it happened 10 minutes ago. I remember crouching down at the foot of her bed and sobbing and thinking how can this be real?

It’s been a year since the family assembled , rallied in hopes of a positive out come.  It is a real testament to my mother and what an amazing family we have .   Sitting together outside the cardiac cath lab as they tried to save her.

It’s been a year since the doctor came out and told us our only hope is to send her to Boston since she coded for 10 minutes and there was not much else they could do for her there. My dad would of moved mountains if it meant for a chance for Mum to live.

It’s been a year since the group of us held each other as we waited for her to be returned to her room so we could see her.  Our group was 11 strong so we could not all wait in the ICU, we were relegated to the waiting room outside of ICU.

It’s been almost a year since the nurse came down to get my dad and inform us that she keeps coding.

It’s been almost a year since we made the decision that she had had enough.  And the next time she coded we would let her rest.

It’s been almost a year since we told her it was okay to go .  And that we would be okay. It was  the hardest thing my heart has had to do , telling her it was okay to go when all I wanted was for her to stay.

It’s been almost a year since I held her hand and kissed her head and told her how much I love her.

It’s been almost a year since it was August 2nd, 2017 at 12:15 am , when she left that body that jailed her for over 30 years , and became the best guardian angel any of us could ever hope for.

It’s been almost a year since my heart was immeasurably broken .

Not a day goes by that I do not think of her and all the joy she brought to our lives.  My heart hurts and I miss her so terribly.  I only hope I made her proud and she knew how much we loved her.

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Hug your loved ones tight and make every day count.

As Mum lived by =Don’t Stop Believing !!!

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Things to Think About

You think you know, but you have no idea…Real World : The Unknown Sick

real world

This week has been particularly awful as far as my Meganitis goes.  This is the most pain I have been since this whole thing began.  On the positive side though – I started the actemra this week after several rejections for this and other medications that might help.  Just in time too – my inflammation is way up, blood work was high.  Down side is that it could take 3 weeks for this to kick in.

So, my life right now is just ugh.  I have been trying to be positive about everything but the struggle is real.  It is very hard to maintain any sort of joy when you are in constant pain.

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To be honest, I started this post last week, its been sitting here brewing, all my thoughts jumbling around my brain.  I want to say so much but its just hard to get out.

So yes, last week was one of the worse on record for me.  In addition to the excruciating pain, my inflammation was “way up ” per my doctor.  I started my new medication, I am doing Actemra shots every week.  I have been rejected for other medications by my insurance company and last week came THE talk with my doctor .  You know the one, the one where the doctor says ” Can I be honest with you?” you say ” yes of course” and he says ” I don’t know what is wrong with you and we are trying everything I know . Nothing is getting better and you are getting worse. If this doesn’t work, we may have talk about if I am the right doctor for you or  a visit to the pain clinic”

To sum up :

  • No Stills disease which he previously said I had
  • Getting worse, not better
  • Inflammation way up
  • Actemra is my hail mary pass – if it doesn’t work not sure where we will go, co pay is $40 for a month supply, pricey , but if that is what it costs to feel good – so be it
  • My “foggy brain” seems to be fixed by switching my Gabapentin to a different med at night ( I guess 1500 mg is a high dose?) That I have definitely noticed a difference.  I was not as forgetful and felt like I had a clearer head.

I capped off the week taking time off from work to rest.  I have to say, doing nothing for days was exactly what I needed to recharge. I did my second Actemra shot last night and returned to work today .

It is so hard not to allow this demon sickness to take over my life.  It has so much become who I am and I fucking hate it.  And as much as I hate it, I don’t know how to change it.  My day to day depends on something I cannot even put a name to. I have no fix , I have no cure, I have no name .  I am a guinea pig after 9 different doctors.  What is the most shocking is that these are the best doctors in the world and they still do not know the cause of this.  Its getting old hearing ” maybe they will name a disease after you …” Like fucking really ?

I have to think about every step I take,  and if the pain is bad enough, I have to think about how I will sit, how I will walk or hobble.

It sucks being in constant pain.  It sucks being constantly exhausted.  It sucks having skin that feels like it is on fire.  It sucks having your armpits swell and hurt.  It sucks when your neck hurts.  It sucks getting random lumpy lumps ( thank God, I have not had in quite some time )  It sucks looking at yourself in the mirror and seeing a completely expanded distorted unrecognizable version of yourself.  It sucks not being able to move and exercise to make yourself the person you knew.

Pain is ugly .

Pain is strong.  Much stronger than I thought.

And I am weak.

I keep trying to find the way.  Any way that I can resume my life and get out of this mud filled funk.  I hate feeling the way I do .  And I know , you are probably saying , suck it up , or change your life then, but if you have ever been in never ending pain, you know it is easier said than done.

Like seriously , when will it end?

Soooo, bringing us to today :

I actually feel more better today than I have felt in a very long time.  I want more than anything to declare my love for this medication , thinking that it is responsible for this feeling, but the pessimist in me tells me to hold off on that parade just yet.

I felt better today and that is a small victory that I will take and hold on to.  I have gotten much better with the acceptance of the little victories instead of getting pissed I am not well.  I can only hope that I will continue to go up from here and not slip back down into this pit from Hell that my life has succumbed to.

I like to think that I am a strong person, but to be honest, I just want to curl in a ball on my bed and wait for this to pass over.  Wishful thinking …. that it will actually pass.   I have definitely become more of a headcase through this, which sucks.  I am looking into therapists to see if that will help me at all.

I don’t feel normal.  Like what do you say when someone says ” How are you ?” do I lie and say ” Great ! Never better !” or do I tell the truth and say ” I’m in a shit ton of pain with no end in sight, how you doin’?”  Then I have to explain everything, which for folks to understand what I have going on, I have to do it.

Maybe I will print out cards to carry around with me….. ” Meganitis , the bad and the ugly, there is no good…”

I think of my mother everyday and I how I want to make her proud.  She dealt with so much medical crap, I don’t know how she did it.  I wish I had one ounce of her strength .  She dealt with so many things medically and she never let it affect her spirit.  Mean while my spirit seems to be sucking me away like the bad spirits in he movie Ghost

 

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Yea, this is me, lol

Mum didn’t stop believing and I have to believe there will be better days to come.

Until then, I will Just Keep Swimming… cause ….

just keep swimming dory

Don’t Stop Believing and Just Keep Swimming , feels good to say them together .

Good words to live by, guess I need to take my own advice…..

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Things to Think About

Armpits and Magoo

The latest in a series of unfortunate events regarding Meganitis is an ongoing severe armpit pain.  Yes, I said it , armpit pain.  Truth be told my armpits always hurt. Weird, I know.  But its just another thing I have gotten used to in my daily life.  However , this week, the armpit pain has been freaking awful.  Throbbing pain in my armpits, yup, this is what my life has come to.

So, normally, I would call my Mom and she would say something to make me feel better regarding my armpit issue. Usually something wacky and insane to make me laugh whether or not she realized she was being wacky and insane.

Thanks to Facebook’s “on this day” feature , a wonderful memory came back.  Maybe some of you are familiar with the cinematic genius that is Mr. Magoo’s Christmas Carol.  This film was a staple in our house growing up and my mother, my sisters and I would happily sing along.  Honestly, we reference this movie all the time.  Countless hours of laughs through my lifetime thanks to his movie.

So today , when I was feeling particularly low and upset about my illness, this memory popped up on Facebook.

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Of course I burst into tears.  But this is just another way Mum was fucking amazing ,  I mean she was just nothing short of incredible.  And I am so thankful that this beautful creature is my mom.

I hope you all are lucky enough to have someone in your life like my mother.  Someone who found the laughs in everything, someone to be goofy with , someone to love you unconditionally no matter what bad decisions you make.

I don’t know when if ever my heart will heal.  I kinda think It won’t.

Going to keep moving on and keep swimming.

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