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

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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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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Things to Think About

My Sleeve Gastrectomy Journey : Day 4

115Hello Everyone!

 

I woke up on the morning of June 19th early.  We had to be at the Brigham and Womens Faulkner hospital for 8 am . We left the house at 6:30 am since Boston traffic is so great in the morning – ugh.  We got in and checked into registration. At this point it was about 8 am and my mouth was sooooo dry , I just wanted to have some water, unfortunately not allowed.  But I was okay since surgery was scheduled for 10:05am , so I could deal.

After registration it was off to surgery check in.  I checked in and shortly fter they brought me to start getting ready.  Hubs had to wait while I got setteled. So all the usual jazz is done,changing , making sure all my info is correct, makng sure I am all ready for surgery.  At some point a very nice nurse came in and said ” Hi . I will be helping Sue with your IV.  ” Then it hit me, the nice nurse hat had been with me was named Sue.

Sign  #1

Now I had a chat with my mom before all this , and this was by far , her sending me a sign.  Then more doctors and nurses came in to introduce themselves.  Wouldn’t you know it – another nurse named Sue and a doctor named Frances.  Now, If thats not a sign -I do not know what else is.

At that point – I was fully convinced that my Mom was right there with me and everything would be ok.

I did go into surgery after 10:05 , I think it was more like 10:20 ish, but I really don’t remember.  I remember waking up super sore and out of it.  My hubs was there and my dad arrived after with some beautiful flowers.

All I wanted to do was drink some water.  But it this surgery – its got to be sips.  I seriously wanted nothing more than to chug the pitcher of water and chew on the hospital ice.  You know what I mean, hospital ice , is like the best ice ever.  You know….

I had some great nurses taking care of me through my first night.  Jess and Gabe were awesome.  I had all sorts of meds and I had to keep getting Heprine shots every so may hours.  They stung and bruised .  First challenge was actually going to the bathroom.  I was told if I could not go on my own by 10 pm, then it was the catheder .  Now, i know a catherder is not something anyone likes, but when I had my daughter , I was severly traumatized.  They put it in wrong and the worst pain of my life endured.  I still remember the feeling. So I did all I could to make sure I went . And I did… 🙂  I know, pee is super exciting, but the night got worse.  So I was in and out of it, one time when I woke up I was super sick, kept thinking I was going to puke, but there was nothing to puke. In addition to , I had horrible gas pains, like awful, kill me now, gas pains.  At some point I am sure someone told me how they pump you full of gas during the surgery . Welp, I do not remember anyone telling me that gas could get caught and cause awful pain.  So, imagin pain like heartburn times 100 burning in the middle of your chest.  It sucked. I was about to grab a scapel and slice a hole in my own chest to let some gas out.

So the moral of the story is – night 1, sucked.  And I cannot say enough about my team of doctors and nurses, they were so great.  Thankfully I woke up the next day and felt so much better. I got some walks in and was able to start shakes.

The thing that I am honestly struggling the most with is my sips.  It doesn’t sound like something that one would struggle with but it is way harder than I expected.  I am supposed to have at least 64oz a day of fluid and 60-70grams of protein.  Definitely have not reached that yet, but each day it gets better.  Its weird constantly sipping, but I need to make sure I keep it up. I do not want to get dehydrated.

And shakes – I have got to get some recipes to mix it up.  Really, I would love to just have some potatoe soup.  I am a ways off of that.

So here I am , ending day 4, looking forward to Day 5.  Its definitly a journey .

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Things to Think About

Stopping the Stigma – Let’s Talk Depression

This past week the world lost 2 visionaries.  Their creative sparks burned out at their own hand.  I feel like we are seeing this more and more .  People have committed suicide since time began, but It seems to be an epidemic as of late.

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I have battled depression since I was a teenager.  I often refer to it as my darkness or my demon.  Honestly , what started my depression was just usual teenage bullshit.  I hated the way I looked and I always thought I was ugly.  I wasn’t the one that boys went after.  I always felt second best.  I never did anything amazing or Incredible.  I liked to write my morbid poetry , which I still like to do.

When I was 14 , I decided I had had enough.  What motivated  me in that moment, honestly, I don’t know.  But I woke up for school and decided to swallow somewhere around 50 asprins.  After I did it I immediately regretted it and woke my mother up to tell her I did something stupid.  Parent freak out ensued as it should have.  They rushed me to the hospital where I got my stomach pumped.  If you have never had it done before, it is not a process I recommend.  Its sucks .  Interestingly, the room I was in when I was in the hospital as a double room.  My roommate was a very large girl who was restrained at her wrists and ankles.  Now, I have no idea what she was there for, but her guardian with her kept saying ” you should not of done that to your sister with a wire hanger”.

I wanted out of there.  But since I was a dumbass and tried to kill myself , it doesn’t work like that .  They wanted to send me in an ambulance to a mental hospital.  I fought my parents about the ambulance and they ended up being able to drive me.

I was sent to McLean Hospital in Belmont MA.  The admissions building was beautiful.  It took forever.  Once I was checked in , I was taken to the unit I would be staying at .  Now remember how I just said that the admissions building was beautiful? Well the unit – not so much.  It was a run down building with a mix of troubled teens to kids with severe issues. I clearly remember walking down the hall to go to the bathroom and there were several rooms with doors open and all you could see was a kid and a mattress on the floor.  It got better – I get to my room and my room mate is very vocal about Not wanting a room mate.   It was at that my point my knight in shining armor saved me.  My dad , he told them I am not staying there and that place as not for me.  My parents had to sign all sorts of paperwork since I was leaving against doctor orders, but man am I glad they did.  I was grounded for a while, actually confined to the porch, but I was so glad not to be there.

I had to go to , well, I was already in therapy.  Once a week on Saturdays I had to go . My mother would bring me, then on the way home we would stop at Sanborns candies .  We used to joke that going there and getting truffles was my reward for being fucked up.

When my oldest baby was born, I was still a baby.  I got pregnant at 17 and when he was born I was 18.  Instant adult.  It was not easy and I had many dark days.  My husband and I had our ups and downs and I am not going to lie, there was definitely moments where I thought it would just be easier if I was not around.  I wanted to give my child the best life possible.  And here I am , mom of 3 amazing creatures , still feeling as though , I have not done a good job.

I used to think about killing myself all the time, to be honest.  Something dramatic.  But even after I did try and take my life, I felt like a failure, couldn’t even kill myself right.   I feel like my life has not been stress free but I suppose everyone out there could say the same.  As much as I would fantasize about ending it all, once I had kids, there was just no way I could ever do it.  When I got sick and as the days, weeks, month, now years went by and I was in constant pain and at the mercy of this nameless disease, I really had some dark days.

Now , more than ever, I try looking on the bright side.  My mother was such a positive force , she went through hell and back , and despite all of it, she was a always a positive beacon.  My biggest cheerleader was always my mom.  When I lost her, I feel like a piece of me went along with her.

I struggle with my demon every day.  Some days she stays asleep inside and some days she is a raging psycho bitch.  I try to find the balance.  Despite being almost 38 years old, I feel like the demon will always be a part of me and who I am . The good, the bad and the demon, I guess that is me.

It is frustrating .  I feel like lately I do need some professional help.  I called numerous doctors that my insurance approved and said were taking new patients, but for the life of me, I cannot get anyone to call me back.  This is the start of where the system for mental health in this country is amiss.  Most people do not even recognize that they need help.  And when we do reach out, there is no assistance.

Suicide is the 10th leading cause of death in America. Each year over 44,000 people in America take their own life.  Its incredible to me that this number is so large. Being depressed needs treatment, instead there is this stigma that being depressed is bad.   We need to accept that these demons exist within most of us and we need to seek help when they start to emerge.  Its not easy , but there is a better way .

For a list of Suicide statistics, click here

We need to stop this stigma and speak up when we see someone in need.  Be the positive change in this world.

If you or someone you know needs help, please reach out:

suicide-hotline-1-800-273-8255-a-simple-repost-could-do-sc-much-29959231

Remember , through every darkness the light is fighting its way though on the other side.

ont stop bel

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