Things to Think About

Days Like Today Are The Hardest

Sup yo.  How is everyone doing tonight?  I know it’s been a while since my last post.  Sorry about that.  Things have been kinda crazy as well as I have dealing with quite the Meganitis Flare.  Yup, full on FML mode.

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So , yeah the flare is super great.   After 4 and a half years , I still have all the same symptoms ( except the rash, thank God ) and still no answers.  I live in constant pain, some days are better than others. And I have come to accept that Winter and the cold make it worse.  I feel better in the warmer months, I would love to realize that I am in no pain, honestly don’t see that happening , but a girl can dream.

As far as my weight loss surgery goes – its great, down 80 lbs!  I need to work out . That has been difficult since the daily pain plagues me.  But I keep trying to make better choices , definitely navigating better though.

Which all brings me to today … I am determined that this will be the year I put a name to what I refer to as Meganitis.  My rhumetologist is great, but I feel like we keep going in circles.  The plan has been to treat the symptoms rather than dig deep and get a diagnosis.  And, I was okay with that . I just wanted to feel better.  But now, I am at a point where this bitch needs a NAME!  I feel like if I have a name for this – I can effectively treat it.

I am all out there. I wear my heart on my sleeve, I cannot keep shit in. I am very open about my condition and my struggles. The reason I am so open about it is, what if that one person I share my story with has the same issues or knows someone that does. I do not want to miss out on the opportunity to gain knowledge about this or to help someone with what I have done to cope.  In being so open, people always have always told me that I have this or I have that , or I need to do this or I need to do that .  As much as I appreciate everyone’s concerns and I know that everything comes from a place of love, none of them are doctors.  But, what I do is take the information people send my way and I do my own research as well as discuss it with my doctors.  Sometimes its a very easy answer why XYZ isn’t my thing and sometimes, its like okay , lets do some tests and blood work and see what comes up .  Normally , I would say that doctors throwing shit at a wall to see what sticks would be insane. But I am lucky that my doctors are all in agreement that I am a unique case and listen to my concerns.

This all brings my to my latest appointment today .  Blood work .  My PCP is doing a whole complete work up and according to the records, giving me tests that I have not previously received. With so many doctors in different locations, something gets lost in communication.  I get it.  It happens.  But that’s also the reason I have my binder of  tests, procedures, and surgeries.  Someone’s gotta right?

My mother has been on my mind lately , more than usual. It hit me like a ton of bricks today .  You see, every appointment, every lab visit, every text or email from the doctor, I would call my Mom when I got out.  Just to tell her what happened or what was happening or the plan for the next visit .  Talking to her always made me feel better, most of the time I leave frustrated and she always knew what to say to ease my mind.  I walked out today and grabbed my phone to call her.  Like auto pilot.  Cried all the way back to work.

Grief and loss , I have yet to find the way to deal with them in  good way . Mostly I am just a crier.  I miss her so damn much, my heart hurts. I know she is around, I do get her signs, but nothing will ever be the same.

I read this today on a Grief and Loss page and it really struck home.

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Go ahead, have a good cry . I know, you feel it too.  I miss her immensely, but it really is these little times that creep up and hit me hard.

I really am focused on getting answers this year .  I just hope I am successful.

You know what I say … Just Keep Swimming!!!

Until next time folks !

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Daily Rants and Raves

Mind Over Body

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The past few days , good ol’ Meganitis has been reminding me that she is still here.  My damn armpits are hurting again.  Yup. It’s as wonderful as it sounds.  I am really trying to not let this rule my life as It has.  There are surely going to be days where I need to listen to my body, but I am just getting back into working out, so I was determined to go last night.

It was a long work out:

1 min of each for 5 rounds, 1 min rest between rounds

Battle Ropes

Bike

Burpee Tire Flips

DB High Plank Rows 7.5 lbs

Goblet Squats 15lb KB

 

Going into it I was worried about the burpee tire flips.  Burpees + Me = No Bueno.  My burpees are terrible, I am limited on how I can do them with my knee and my mobility, but I can do a modified version.  I managed to do about 3 each round, I found that to be a victory.

The thing I struggled he most with was the DB High Plank Rows. And I was only using 7.5 lbs! UGHHH.  Sweet Baby Jesus were my hands killing me.  Its a lot of weight to be resting on those dumbbells.  I didn’t think I would struggle with it as much as I did, but man was it hard.  At one point, I tried to pick my hand up and it just would not go.  But I didn’t give up.  I was slow but I kept at it.

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I think another thing that is affecting me and the Meganitis is the weather.  It’s been pretty rainy here and it does a number on me.  As I type this , my armpits are throbbing.  I can feel my lymph nodes enlarging.  I am just praying that I can hold the Meganitis at bay.

Having a chronic illness sucks.  Not knowing what it is, sucks worse.  I know it could be way worse and by no means am I having a pity party. It just sucks.

Getting into a mental state of mind where I can let go of the illness and just be me, is not easy.  It is hard to get in a mindspace that I can be stronger than this and I can’t let it rule my world.

Honestly, today I have felt like I just want to crawl in bed and not move, but its after 10 pm and I am not even in bed yet, lol.

It is a challenging journey that I am on.  I can only take it day by day and

Just Keep Swimming !

 

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Daily Rants and Raves

Partner WOD

Partner WOD. I hate the word.

As I hate hell, all Partner WODs.

Partner WOD is, in my opinion , the worst damn thing that can be on the board in the gym besides burpees.  For those that are physically unfit, the Partner WOD is our chance to drag down our partners and struggle to keep up.  That’s not exactly how it is, and if you ask any partner of the unfit, you will get the ” don’t worry about it”, ” no big deal response”.  But for me, its like a death sentence.

I know, I know , I am being super dramatic. But picture this if you will.  Me, being the new kid on the block again , not knowing ANY of these people and knowing how limited I am . And these folks, I am sure were like, ” Ain’t no body got time for her” (they were all actually very nice, but still ) I could feel the sense of fear in my eyes as the coach  was explaining the work out.  I even offered to do it by myself so I would not bring anyone down.  No go.

It’s not that I don’t want to be part of a team or have a partner – some folks are hardcore, balls the wall, keep track of every rep and push it to the limit.  I would never want to hinder anyone’s success. That’s my issue with it.  On the other hand , it is nice to have some one to push you.

So the way the workout went yesterday was partner 1 did a run, then partner 2 did a move.  There were 3 of us in my group, my set was based on one persons stuff, so when she ran, I rowed. Here is how I did:

35 min AMRAP

Row 506m (rowed while partner ran )

DB Hang Squat Cleans 7.5lbs ( ugh but man it was hard!) 26

Rowed 490 m

159 single jumps

Rowed 470m

Kettlebell swings 18lbs – 32

Rowed 438m

Hands Release Push Up – 13 (I was DYING at this point )

Rowed 460m

DB Hang Squat Cleans  15

Row 480 m

140 Single Jumps

So first off – it was an AMRAP and Any AMRAP I go into praying to the Gods that I can make it through at least 1 round . This workout I was able to due to the fact it was a partner WOD. So yeah , victory ! In my eyes . And I only said “Just Keep Swimming ” twice , lol. Those pushups, man , those were rough .

All in all , I am really happy with the workout I did . I was feeling great and dying at the end – so to me , total success! I really think these classes are going to be awesome for me .

It’s all coming together!

Hope you all have a great rest to your week!  It’s Thursday, that means I need to do my shot, it’s a pain in the ass but a small price to pay for feeling better.

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Daily Rants and Raves

A good workout a long time coming

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Hello everyone!

Let me tell you – I feel good! I had a great workout last night.  It was tough but  a good tough, for me, and it was modified for me , which was great too.  But it kicked my ass.  I have been searching for a new class. I need to workout.  I know what works for me and the classes work.  I don’t want to go to  regular gym, I need the structure of the classes and the push of the coaches.  I have found what I am looking for!

So, I gave it a whirl last night.  I was terrified and excited all at the same time.  After the warm up – it was go time.  The workout was a ladder, work down it, then do it in reverse. Here is the work out as I did it:

125m row – 10 mountain climbers – 40 single jumprope jumps – 10 BW squats – 125 m row – 10 HR pushups – 40 Single jumps – 10 reverse lunges – 125 m row – 5 burpees ( way modified ) -40 single jumps – 10 broad jumps – 125 m row – 10 knee raises ( or knee raise attempts ) – 40 single jumps – 10 knee raises ( or attempts) -125m row – 10 Broad jumps – 40 jumps -5 way modified burpees  – 125 m row – 10 reverse lunges – 40 jumps – 10 HR pushups – 125 m row – 10 BW squats – 40 jumps – 10 mountain climbers – 125 m row

My time was 26:36.  This , I thought was a great first workout back.  It felt great to be working out.  And I only said “just keep swimming ” to myself 2 times, lol.  Those damn burpees. Even barely being able to do a modified version of them, I was dying.  Somethings never change.

I am sore today , but its a good sore and its not a Meganitis sore,so that is even better.  I really feel this is going to be good for me and I am excited to be starting this new part of my journey.

Never give up .  Even if your journey takes you down long twisted paths, as long as you make your way to your happiness – it doesn’t matter how long it takes.

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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

1 Month Since Surgery

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It has been a month now since my surgery.  It has not been an easy month, but I am glad I am on my way.  Navigating how much to eat has been the hardest challenge.  I have been eating the same way for 38 years , its not so easy to change it.  Figuring out what to eat has been a challenge too.  And when to eat, and eating itself.  All the chewing……

I have been sticking to my shakes , chocolate for the most part.  Its so much easier to get down than the vanilla.  Protein bars and greek yogurt round out my days, then dinner is usually something chicken based.  I am feeling good overall.

I need to get exercising more. I have been out walking, but I think this week I will start some home workouts.  Or at least try.

My Meganitis for the most part has been at bay, which is amazing.  I still get exhausted and my fire skin is still raging, but the whole body soreness has gone away .  Well, except for the arthritis in my knee.   I am hopeful that as I lose more weight, my knee will feel better.  And I am sure exercising will help too.

Anyone out there have a workout app or program they use at home that they swear by ?  I know enough things I can do myself, just looking for a little guidance I guess.

Cheers to a new week!

Don’t Stop Believing and Just Keep swimming !

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Daily Rants and Raves

It’s My Birthday !

Yes, you read it right, its my birthday, July 4th.  Happy Independence Day America!

I will say, today has been a good day .  We have a cookout every year on the 4th with family and friends.  Its great to catch up with everyone.  I am very blessed that I have, what I feel, is a very close family.  I love them all dearly .

What royally sucks is , even still now, I keep waiting for my Mom to call and say Happy Birthday.  I know, I’m now 38 , but damn, I still miss her like she left yesterday.  This has loomed over me all day, and I can’t shake the ache in my heart.  Ugh, sucks.

In other news, I have officially hit 2 weeks post surgery .  I am feeling really good!  I am pretty surprised actually.  My right side is still tender, but that is subsiding as well.  I have to say, I really hate taking some of my medications as liquid instead of pill form.  I mean like recoil when I have it, can’t wait until that shit is over.  I am still mainly on Protein shakes but in this stage, but I have been having other stuff too. Nothing really solid, but I have had protein bars – had no problem with them.  I did attempt some chicken , small little pieces and I chewed very well, but that did not end well. Lesson learned.  Since it was my birthday, and I could not have the cheeseburger and chips I have become accustomed to at a cookout, I opted to give my sisters pulled pork a small try.  No roll of course, but a small scoop- I took my time with eating it and I had no issues! And it was delish! A scoop filled me up with was great.  Birthday Gods must of been having a convo with the surgery Gods and must of been like ” ok, let her have this one” , lol.  Also, I did not have any cake.  I made sugar free chocolate pudding and had some sugar free cool whip with it.  My daughter and nephew got me my bowl of it.  They brought me a bowl full of sloppy pudding and cool whip all mixed together, bless their hearts.  I could eat about a quarter of the bowl, if even that .  Its the thought that counts.

Since my incisions have not fully healed yet – that meant I had to stay out of the pool – on a 90 degree day.  Soooo, I got creative. I bought a little kiddie pool and filled it up half way.  Created my oasis next to the big pool. I could sit in it with out getting my stomach wet, but still keep cool in the water.  It was heaven.  I was cool, next to the action and my nieces and nephew kept popping in keeping me company – all while obeying the ” Auntie no splash zone”.  I just love those kids. ❤  The hubs even hung out with me for while in there until he defected to the big pool , can’t say I blamed him, lol.

Last night we spent with family at my sisters new home to see the fireworks in my home town. To say it as a scorcher, is an understatement.  It had to of been at least 95 degrees and humid as hell on top of it.  It did not stop us from having  a really wonderful time.  The fireworks were great and there were sparklers for the kiddos. ( supervised and very safe , just saying ) .

My daughter Maddie with her sparkler. She had so much fun!

All in all , I can say it has been a great couple of days.  Follow up appointments next week with my surgeons.  Hopefully I will find out when I  will be cleared to head back to the gym, cause I am itching to get working out.

Happy Independence Day Everyone!

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