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

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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Daily Rants and Raves

Long Days and Long Thoughts

Oh hello there world, I know its been a bit since my last post.  Honestly, I have thoughts and ideas every day that I want to share, but I don’t have the easiest time getting them out of my head.

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Here is my latest health update , for those keeping score, we are at a total of 10 doctors and yet I still do not have an actual diagnosis.  However, the current medication I am on, the Actemra injections 1x a week , seem to be actually working (knock on wood).  The Saxenda injections on the other hand, not working. All It seems to be doing is giving me bruises.  My left knee is still giving me problems, it sucks.  I have been waiting so long to feel good and its like , hang on a sec, we can’t possibly allow you to FULLY feel good. Ugh. Double ugh with cheese.  Mayor of Ugh City.

On a positive note, next Wednesday I start my journey with weight loss surgery.  To be honest, I feel like this is a last resort, but I also feel like a complete and utter failure.  I failed myself with bad decisions and bad choices. The sad part is, I really just realized this.  I wasted years of my life and I just hope its not too late to get my life back.  Then again, its been so long, I don’t even know what that would mean. I don’t even know what this life I long for is.

How terrible is that? Spending years wanting something and never making it materialize.  Story of my life.  When you break it down , I just want to be happy.  I have spent my entire life in search of happiness.  Pure happiness.  They did not call me Morbid Megan when I was a teenager for nothing .  Now I am Morbidly Obese Megan.

I want to be happy and content. Instead I am restless and depressed.  In the past three years, My life has become my illness.  Some days are not so bad, and some days are unbearable, and most days, I just deal with the pain.  Stairs though – motherfucking stairs are the devil.  My knee and stairs do not mix, never mind the fact that I am a Fatty McButterpants.

I hate the way I am . I hate the fact that my twisted sense of self brought me to this.  I hate the fact that my body is failing me and it needs help, medically and mentally.

Now I know my mother had so much more shit to deal with  and I cannot even come close to the turmoil that she had to endure on a daily basis, but I do know that I need to do everything in my power to be as healthy as I can so that I will be here past 61years old.   I truly do not know how she did it, but I am so grateful she did what she could to be with us as long as she was.

My story is far from over.  I need to live my best life possible ,  I say ” Just Keep Swimming ” to you all, but I am barely staying afloat myself.

Since my mothers passing, I have been searching for a way to honor her.  I have a clearer mindset as of late and I think Mum would just want me to keep being me, despite the obstacles and shit that gets tossed my way on the daily.

My mother took on every day with joy in her heart.  She faced every shot of medical bullshit dealt to her and made joke about it.  She found joy everywhere.

That’s what I need to do and Christ, it is harder than it seems.

I make jokes about my weight as a coping mechanism, but Mum, she made jokes about her situation for us I think more than her self.  And it helped, a lot.  She kept believing for us.  I used to think it was for her own sake, and maybe at the end it was, but it was a completely selfless act to help us cope I think.  From her “luxurious suite “at the Brigham and Womens hospital, to her crazy impressions, or just the excitement over a ham sandwich made by my dad instead of hospital food, she found the light through the dark.

That is my  mission. Find the light and be happy.  Doesn’t seem so hard, but will probably be the fight of my life.

Don’t stop believing and Just Keep Swimming Everyone!

I would love to read how you find the good within the bad and the light through the darkness, please share with us!

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Daily Rants and Raves

The Last First Thanksgiving

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We are on the cusp of the Holidays.

I am dreading this. How do I do the holidays without my mom? I know , I know, people lose people every second of every day, I am no different. I have lost before. It royally sucked when my sweet Gram passed in 2015.  And that year the Holidays were hard, but how do I do this?

For God’s sake, I can’t even write about how I am even going to begin to deal with this and I need to figure it out asap.  I just don’t know.

My daughter and I watch the Voice every week.  Our favorite is Janice Freeman, if you have watched it this season – you need to discover the absolute powerhouse that is Janice Freeman.  That being said, Janice was last to perform last night, well after my daughters bed time.  Right before Janice was about to come on, my daughter walks out of her room in tears, clutching her bunny she made with Nana, crying about how much she misses Nana.  Breaks my heart every time.  I kinda think it was Mum this time making sure she got to see the person she wanted.  I know its a stretch, but hey,I will cling onto anything I can , lol.

I am terrible at this. I really am . I need to be the one there for my kids when they are upset, especially when it is about Nana, and instead I am joining in the cry . Or crying everyday.  Like, when does this get better? When does the pain subside? I want to make my mom proud .  I feel like I was such a let down in her life.

I gotta find my way in this world and I don’t know how to take that first step.

I love writing this blog, It is such a release for me.  I think its time for a revamp, hopefully in the coming year, I can give it a fresh makeover.

Hope you will stay along for the swim.

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Things to Think About

Don’t Hold Me Down

We all have insecurities. We all have doubts about our lives or ourselves at some point . And if you are gonna say you don’t , I am calling bull shit .

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I have to be real here , I’m sick . I have a disease according to my doctor we just don’t know which one . Is it deadly ? I doubt it , I think it would of gotten me by now . Is it common ? Yeah , gonna day nope on that . Do we know what it is ? Another Nope city .  I am very thankful that what I am dealing with isn’t as bad as it could be .  In the grand scheme of things , I am lucky . For the most part , I can still function . It varies from flare to flare , at the moment I can still do mostly everything.

Right now however , I’m in the middle of this big flare . The pain is excruciating.  I’m beyond exhausted . And my fingers hurt , really really bad . I need that to subside .  To say I am hot, is an understatement.  It feels like Hell itself is residing on my skin.  It has gotten as bad as randomly breaking out in sweats through out the days.  For example, its 60 degrees out and I am sitting with the Air conditioner on full blast.

What I am finding more and more as this progresses , is that I am having a more difficult time doing things.  Or things I normally look forward to, bring me severe anxiety.  Things require more planning and even with more planning, I still not be able to what I intend to.

I NEED TO FEEL BETTER!!!!

I keep telling myself I need to work through the pain I am in.  I am the one holding myself down, albeit unintentionally.  Which royally sucks.  Like, what do you do when you are literally causing yourself pain.  Its awful.

So, what do I do ? Here’s the plan:

My doctor is working on getting me approved for a different medication.  Hopefully this will be a key starting the car that is driving myself back to normalcy.

Its time for my appointment with the ENT to get a sleep study done.  Pretty sure I will be told I have sleep apnea, which losing weight ill help. But we will see what she says tomorrow.

I am doing my best to be positive like my mom.  Yesterday she was gone 2 months, it still seems like she just left us.  I still don’t know how to be.  When does it get better?  I know the answer, but I just wish that wasn’t it.

I am hopeful things will get better.

I can’t let me get…me.

Before I sign off, I just need to send my heartfelt love to the victims of all the recent tragedies that are befalling this world.   We witnessed the largest mass shooting in American history this week.  When will senseless violence end?

In the words of the great Bill S. Preston Esq. and Ted ” Theodore ” Logan :

BILL AND TED

I think if we all were more EXCELLENT to each other, we would find this world a much better place.

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Daily Rants and Raves

Faking It on a Wednesday

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I feel like Kurt is a good way to express myself. I am a huge Nirvana fan .

I feel like every day I am faking it.

Faking that I feel good.

Faking that I can handle this.

Faking that I am not brokenhearted.

I am trying to suck it up and deal with my daily pains.  I have moments where all i want to do is go to bed. I have moments where I feel fine. I have moments where I want to remove my legs and hang them on the wall. There is nothing I can do. Changing meds hasn’t helped . There is no cure for the fibro and if it is RA ( or a variant of it ) , there is no cure for that either.  Its just one of those things that people deal with I guess.

To be in pain on the outside hurts and sometimes it feels better. But to be hurting on the inside is a whole other ball game. I would take 1000 times the pain on the outside to alleviate this pain in my heart.

I have hurt before, for years I have been in a depression I guess in the clinical sense of the word. I Could not see the light. I feel like the light right now is hiding behind the shadows.  I know this is not how my mother would want me to feel .  I know she would say something crazy or something comforting or both. She had that way about her.

The reality is I miss my mother something fierce.  I miss hearing her voice , I miss her hugs, I miss just knowing she is here.  My mom was my person. My person I call when I am happy, when I am sad, when I have good news, when I have bad news , Mum was my person who could talk me off the ledge and make me feel better.

So, each year for the past 4-5 years I have been taking my son to the comicon in Rhode Island. Today they announced that Cary Elwes would be attending.  My most favorite movie of all time is The Princess Bride.  So, of course, who do I call to fangirl too?  I can hear her going ” oh how cool is that ?!” Not that my dad didn’t have pretty much the same reaction, but its not the same.

I am trying to figure out my way in this world and how to best honor my mother. I’m at a loss.

I need to get myself together, and get back on track. Just trying to figure myself out.

Gotta keep swimming

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Daily Rants and Raves

Baby Steps

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Good Evening Everyone !

It is with extreme happiness that I can tell you I finally did it = got my tookus back to the gym!

I got my new medication after my rhumetologist  stepped in  .  It arrived on Friday  and I started the injections that night.

I am still nauseaous, but it is not as much as it was before. I am hopeful that after a few weeks, it will decrease significantly .  The best part is that my doctor okay me getting back to the gym as long as I ” listen to my body “. So, I contacted my coach Jane at       Crossroads Strength and Conditioning to see if it would be okay if I came back with my issues.   And she said of course! Definitly knew that I was going to basically do everything modified but I had to get moving.  ANYTHING is better than nothing, right?!

So, started new meds.

Ready to go back to the gym.

And oh yeah, decided to jump on the Gluten Free train.  Let me explain : I had read multiple articles regarding Gluten and inflammation , so I figure, what the heck, I’ll give it a shot. So far I am on day 3.  Honestly, this is 2 days better than I thought I was going to do.  I’m not sure how long that I can keep it going, but if it helps, I am going to give it a whirl.

I got back into the gym and the warm up itself was already killing me , lol.  Onto the workout : here is my severly modified version .  No laughing out loud, 🙂

4 rounds

30 wall throws ( like the baby sister of the wall ball ) just tossed the ball at the wall

20 Step ups on the little box

10 DB snatches!!!! 15l bs —–> I LOVE SNATCHES! AND I COULD DO THESE NOT MODIFIED!!!

5 Push ups – these I did standing up leaning into the bar on the rack.  Truth be told, I totally could feel this in my arms and chest way more than any pushups I had done before.

I completed all 4 rounds – total victory ! And under 20 minutes!

This was complete baby steps.  And this will be for quite some time, I am sure.  This time around , I need to do the baby steps.  I used to get really frustrated when I thought of how far I had come or how much I could lift or do, but this time, I can’t be like that .  It’s wasted energy.  I am just going to roll with it and see how it goes.

Its been a productive week so far.  Hoping to get back in the gym tomorrow. Starting slow with 2 times a week.

Gotta Keep Swimming !!!!

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