Pieces of Her

Good night world and all who inhabit it,

I am gearing up for my weight loss surgery. It will be taking place mid June. Some of you may know that there is a process to this weight loss surgery, the process isn’t bad.  It is interesting .  I have done my first 2 nutrition appointments and met with the surgeon.  Next week I have , nutrition, psychiatrist and endoscopy.  Since I started , I have been trying to make changes so that once I have the surgery its not so bad adjusting.

First up -no bubbles.  Not supposed to have carbonated beverages so I cut out soda.  I was drinking sparkling water to get the bubbles thinking it would help me, but  I had to cut it.  I have been drinking my 64 oz of water each day .

Protein – I am going to start getting some protein shakes since day 2- day 9 after surgery will be all shakes.

Anyways, I have been trying to get moving more and this week I have been really thinking about my Mum. Probably the impending Mother’s Day holiday.

I was driving along this weekend and I started squeezing my butt to the beat .  I can hear my Mum now, her proudly proclaiming how she would do her butt squeezes to the beat of what ever song was on… Maybe if I keep it up, I will have ” Buns of Steel” lol.

I was cooking dinner the other night dancing around the kitchen, and all I could do was think of  Mum.  Dancing around to One Direction, no less.  Ridiculous I know, but have you listened to them? So damn catchy! Current obsession is ” Steal my Girl” and “Perfect” .  I ain’t too proud to admit I am a grown ass woman dancing around to a boy band that’s not NKOTB or Backstreet Boys. ( for the record, saw NKOTBSB in concert at Fenway Park – UNBELIEVABLE Show!)

Its these little things that I feel Mum shines through.    I know I am probably searching for signs and finding them in places, but its comforting to an extent, like there are pieces of her here with us .

Like tonight, I was taking a ride to go see her, her headstone is in.  I needed to see it in person. So I am driving along and ” Beast of Burden”  by the Rolling Stones comes on .   I don’t remember downloading it, could of been the hubs or maybe the kids, but in any case, there it was blaring out.  My mother and I had this running joke – I was forever singing ” I’ll never be your BIG SUBURBAN ….” instead of Beast of Burden.  So there I was crying my eyes out on the way to my mothers grave singing at the top of my lungs

” I’LL NEVER BE YOUR BIG SUBURBAN !!!”

the-rolling-stones-beast-of-burden-rolling-stones

I know she is always here with me, I just like when she reminds me in funny ways.

 

Back to my weight loss stuff – I am currently down 5 lbs! I am looking forward to the surgery . I know I have the best Guardian Angel on my side 🙂

 

Don’t Stop Believing !!!

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Conumdrum

co*num*druma confusing and difficult problem or question

 

Its no secret that I need to lose weight.  Now more than ever.

I am like the Stay Fucking Puft Marshmallow Man.

stay puft

( Actual Likeness)

I am the first to admit, I am by no means a healthy eater and it has been quite some time since I was able to do a proper workout.  I would love nothing more than to get into the gym and lift heavy shit.  I am so hopeful that this new medicine will allow me to resume my life.

Have you ever felt trapped?  Try being trapped in a body you don’t recognize.  I feel like the real me is buried underneath these layers of blubber and she is drowning. Suffocating. She is disentergrating.  It’s like I am stuck in here and my skin is going to burst.

Here is my issue – and by no means am I making excuses or blaming someone else for my situation…. The fact of the matter is very simple.

Up to the past week, I hurt.  My whole body was sore.  It is very difficult to do anything when you are in pain.  So maybe it is an excuse, but it is the reason I have not worked out or done anything remotely resembling exercise.  I don’t eat good either, can’t blame that on anyone either.  Current status is wicked sore left knee. Fuckin arthritis. UGHHH

I have allowed my disease to rule my life.  I am not proud of it, this is a badge I do not want.  But sadly , this has become my reality.  And not for nothing I do not even have a name for this disease.  I have a faceless demon ripping my life from me and I can’t even blame anything for it.  Its frustrating as hell.

  • Whole body pain
  • Fire skin
  • Exhaustion

These are for the most part,  daily occurances.  While I have had some relief from the pain depending on the different medication I have been on , it always comes back.

Tonight I will do my  6th Actemra injection.  All in all, so far, the whole body pain has subsided and  the fire skin has too.  My knees are killing me, but I am pretty sure that is more due to my ridiculous weight gain.

So here I am , wanting to work out, wanting to be a better version of me and here I sit, broken. That is my conumdrum.

When I went to the Sleep Disorder doc, she recommended that I check out the Center for weight Management at the hospital.  I said yes, figured I would get some tips and tricks and maybe, just maybe , be able to jump start my weight loss.

I am stuck in a vicious circle.

Need to lose weight —> In pain and hurts to move so I can’t exercise  —> depressed about it all —> Eat more and move less due to the pain and depression —->  Miserable all the time —> always exhausted —> New medicine ( yay!) —> soreness subsides EVERYWHERE EXCEPT MY KNEE! —-> Finally feeling better —> can’t do shit cause my knee makes it hard to move— Back where I started —> Need to lose weight

So at the appointment I get weighed in of course.  And the number is the highest it has ever been, like disgustingly high.  Didn’t help that I had to do it twice cause the nurse asked me to get on the scale then walked away, like I needed to see those big red numbers twice.  Ugh.

Then as I sit reeling from the metaphorical weight of my physical weight, the nurse lightly says ” I’ll take of 3 pounds for shoes and clothes”.

BIG SHIT,what difference does 3 pounds make?! Is that supposed to comfort me?

Doc comes in and I go over my history while she takes notes and reads my file.  When your doctor says ” oh boy ” multiple times….. kinda sucks.  So she non chalauntly says I am definitely a candidate for surgery, particularly the sleeve version.  Because of my ” complex medical history” and my ,current medications, she did not feel that putting me on the common weight loss pill would be good for me and would cause issues.  She prescribed a hormone shot that I will do every day that should help with cravings.  Of course I need to wait for the insurance to approve it, so , not sure how that will work just yet.

So , here I wait.  I was told the surgical team will call me to start the process and make sure I qualify.  And all my doctors need to approve as well.  1st step is an informational meeting that I need to attend.

I have to be honest, I never imagined that I would be someone considering weight loss surgery.  And I know that my current state is of my own doing , and if I do the surgery , to be successful I need to change a lot. And did I get some help from the meds I was on? I am sure I did, but I can’t blame being morbidly obese on them.

My life is my fault.  And maybe if I didn’t weigh so much , my Meganitis would not be as bad.  Who knows?  All I know is that I need to do something that gives me a fighting chance at feeling better.  Everything is connected.

The absolute worst thing about all of this weight shit is I did it to myself.  Its completely embarrassing being this gross thing that I have become.

Sometimes, I just don’t know who I am .  Like there is a version of myself I see in my head and she sees the outside and can’t get out or be heard.  I know I am a crazy person.

I just want to be happy.  Happy in myself, happy with myself, Happy in this life.  I just have 37 years of failure to contend with. Isn’t it awful that more often than not, we are our own worst enemies?

Cheers to new hopes on the horizon…

 

Just Keep Swimming and Don’t Stop Believing,
Xoxo Meg

 

 

 

 

 

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

 

ghost bad guy

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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You May Say I’m a dreamer

But I’m not the only one …. 

Momma was too . 


My mother was probably the biggest dreamer I know . Always having hope that her dreams would come true . I’d like to think that all her dreams came true , but I’m sure they didn’t . I mean if her dream was to be the bestest momma ever and the bestest nana ever and just the greatest human to ever live – then mission accomplished! 

Sunday we started the process of going through Mums things . Gut wrenching doesn’t even describe it . It was fucking awful . It would of been no matter if it was a month since she has been gone or 10 years . I hated it . 

As long as I can remember my mother was always dreaming of a better way , dreaming of her own business so she could contribute. She did the usual , you know the home party route , Princess House , Party Lites , she did Avon . In fact , it was when my mother was canvassing the neighborhood selling Avon that friendships were forged with our neighbors . Now , 34 years later , we are still friends . That’s magic . 

My mother had a cross stitch business for a large part of my life as her health would allow . She would sew these amazing samplers and then she would stain them to look antique. I would go with her to craft fairs . She was so talented , it blows my mind . She had done an after school program that I helped her with . She made cross stitch kits for these kids . They all loved it . Honestly I had forgotten about it until I was looking for a cross stitch kit for my daughter and I to do together . I , myself haven’t done it for probably 20-25 years, but I want to give it a whirl . And my daughter wants too a lot . So the search continues for a kit . 

Amongst my mothers things were a plethora of crafting items . From frames to jewelry making tools and beads to jewelry she wanted to sell , and as I think of it , it makes me so sad . She had all these ideas , probably thousands of ideas and she never really got to see them through .  

It just breaks my heart that her body would  not allow her to fulfill her dreams . I hope she didn’t look at it that way , but I can’t help but think of it like that . 

All of this has me really thinking about my dreams and what I want out of my life . What am I passionate about ? What do I want to do in my life ? I mean I got very lucky with 3 healthy kids , but what do I want ? For me ? To fulfill me ? I think as parents we get so caught up in our kids that we forget about ourselves and what made us who we are to begin with . 

So , for me , I want to get back into writing . I have story ideas that I need to bring to life.


I love writing . I always have and it’s something I have been going over and over . In another moment when Mum sent me a sign , I was watching the Simpson’s last night ( yes , I watch the Simpson’s , don’t be hatin’) and it was the episode where Moe becomes a writer and gets to go to Word Loaf . Check it out below : 

Moe N Lisa Simpsons
I looked at it as it’s an episode about writing . And I have been searching to find myself and how I honor my mother . So , I took it as a sign . 

I think the way to honor her the best is to just be me and not stop dreaming . 

And now that I’ve got some star power up there , maybe some of these dreams will come true . 

Don’t stop dreaming 

Don’t stop Believing 

Don’t stop Swimming 

Another Day Down and I’m Still Standing 

Happy Friday Everyone!

I’m well into my reboot of my fitness journey . And honestly, I am doing way better than I anticipated! I’m still standing !

I have accepted that I need to take it slow and I am in a good place about it . I did the Piyo the other night and then tonight I did 10 mins of cardio , then 15 minutes of Piyo . I know it’s only 25 minutes but something is better than nothing .

It’s strange to say I’m in this place now . But I guess being sick and limited to things will open your perspective.

In addition to my feeble workout attempts this week , I stopped drinking soda . I’ve been drinking carbonated water , it’s fizzy and gives the soda feel . Good alternative I think .

All in all I feel I really good about things so far .

Gonna keep an open mind and keep on swimming 🙂

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A Step is still moving forward – no matter how small

Hello there everyone!

Last night at class – I was a massive Fail. Massive.   We did 200 meter sprints.  My 3rd sprint – I hit a dip in the pavement and rolled my ankle.  I had to do slam balls for the rest of the class. I was soooo frustrated! But I had to look at this in a positive way. Before the sprints we did a 400 m run, and I think I did pretty good with that. So that was my positive.  I HAVE to find a positive in everything or else, I am going to fail… That has always been my problem, I find a negative and fail, fall off the wagon and end up back at square one. Not this time.

Tonight, I went into class determined.  We did The” Danny ” Hero WOD. It is supposed to be 20 AMRAP of 30 Box jumps, 20 Push Press and 30 Pull ups. I completed 2 full rounds and 1/3 of the 3rd. So here is the breakdown of what I did and my modifications:

Box jumps = usually I use the 12″ box, which I have been very confident on, but I do need to go higher, 18″ was too high, so we added a plate and I am guessing around 14-15″.  I was intimidated and we actually had a higher plate at first, but once I got going I was great.  I completed 3 rounds of 30 jumps = 90 jumps

Push Press= knowing we had push press tonight, I referred to my journal to see how heavy I had gone last time we did overhead lifting.  Last weight I did was 55 lbs.  So preparing myself, I knew I had to do at least 55 lbs.  Setting up my barbell, I was going to jump right to 55, but went with 45 to start, just to make sure I was thinking the right thing. And it was too light. I moved up to 55 lbs.  Surprisingly, I feel like I owned it! I felt like a machine ! It was awesome! I completed 2 rounds of 20 lifts and 6 into the 3rd round = 46 presses

Pull Ups = CHA RIGHT! Haha, yeah, no go on the pullups – so it was ring rows instead. I hate ring rows! I completed 2 rounds of 30 rows = 60 rows

For some reason tonight – I feel awesome! I can see my progression. I feel my progression.  I am ACTUALLY improving! This is such an incredible feeling.  Even though these are small steps , all these steps are carrying me to where I need to be.  Every small step counts.  Just Keep Swimming.

DON’T EVER GIVE UP! As long as you do it one more rep or 1 step farther or 1 jump more than last time, you are on your way.  This is a long journey, if we wait til the end to celebrate, what fun is that? Find your victories! Cherish them! Embrace each little moment for the highs and the lows of where you were.

Never give up!

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