Daily Rants and Raves, Milestones, Things to Think About

Back at it Baby!

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Hi Everyone!

It’s been a long ass time! How is everyone doing ? Nothing like a global pandemic to get your life turned up side down , am I right? How have you been holding up?

I know so many people have been affected by this pandemic in so many negative ways.  All I can do is hope for a safe end soon and our lives to return to normal. 

Let’s recap: when last we checked in with our heroine, I was on the eve of my first rituxan infusion. LET ME TELL YOU FOLKS – THIS SHIT IS THE REAL DEAL!  I am still dealing with ” Meganitis” , what is ” Meganitis”, you ask?  You can scroll back through all my posts to see my struggles, but this is the breakdown. Halloween 2014, discovered a lump . turned out to be inconclusive, then spring 2015 another lump – again inconclusive.  They were enlarged lymph nodes. Blood work all over the place, rash , fevers, chills, which turned into fire skin. Had Scans, PET and CT, 11 doctors , and still no answers. Multiple medications that worked for like a week, just to not work. Diagnosed with Fibromyalgia and at one point Stills Disease ( now since ruled out )

Current status is a flare up / flare down type of situation . Flare time results in severe whole body pain, lymph nodes in pain, ( arm pits hurting is the weirdest thing ) It sucks.  My rheumatologist and my immunologist are the drs I see the most. Working together. They came up with having the infusions. The infusions deplete B cells that cause inflammation which is why they are life right now.  So you are supposed to get them about every 6 months. I am up to about 4 months.  But man, once they kick in – sweet relief!  I feel like I have my life back. It sucks cause this is a whole day process. The infusion lasts about 6 hours.  But I will do it if it means I get months pain free.  My hopes is that I will get to the point where I do not need them anymore.  A gal can dream.

On my weight loss surgery front – I am still stuck at 80 lbs.  It was hard to work out or get moving when you are in constant pain. Now I have been trying to get moving more. I have been taking walks every weekend , excursions, bird watching .  I like it cause I can get a good walk in , a couple miles without even really realizing it. Plus getting out walking, its easy to social distance and nature is all around us!  I need to get under 200 lbs. Its a goal and I need to hit it. Part of the reason I am getting the old blog back up and going. Its a mental thing , but great for accountability for myself.  But I really feel these walks are helping me, take a look at my progression so far:

 

The picture on the left was taken at Easter 2018, picture on right, July this year. When I took the picture on the right , it was the first time I was like – ” whoa, this is me?!?!”  I feel my walks are really helping me get moving . 

So, in other news I have become a birder, wildlife photographer.  At least attempting it, lol.  Its funny cause when I was a kid I hated birdwatching with my parents. Now , my dad and I discuss birds and go places looking for rare birds.   We found a Mississippi Kite in Durham NH, as you can guess by the name, the bird should not of been there, but it was.  Kinda cool if you are into that type of thing. 

Here are some recent pics I have taken on my excursions.  Mass Audubon membership was the best thing to get!

 

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Osprey at Parker River Wildlife Refuge
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Greater Yellowlegs
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Monarch Butterfly
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Waterlily
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Red Tailed Hawk at Mass Audubon Ipswich River Sanctuary

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So that’s whats new with me.  What is new with you? How are you dealing with this world right now?

 

Hope you are all well and your families stay safe!

 

 

 

 

 

 

 

 

 

 

Daily Rants and Raves

Frustrated in Undiagnosed Land

 

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I had a good run.  From February to September has been the longest time I since I got sick that I have been relatively  flare free. A few small little flares , but otherwise, its been good.  The past month or so , I have noticed the flare getting worse.  It hasn’t subsided.

Arm pits sore, necklace of pain in full effect. Whole Body soreness.  I know I have said it before, I am so fucking over this.

I have an appointment with my Rhumy  coming up, I am not even sure what he can do at this point. But I am going to try and be positive.  I am hoping maybe something will explain why the sudden flare.

Its very hard to be positive. I am trying, I swear, its just so damn hard.  No one understands , because no one knows what the fuck this is.  Like, if you have a disease, chances are there are other  patients who you can relate to and who understand what you are going through.  With Meganitis, I ain’t got shit.

While I am thankful that this is not something that has killed me and I am thankful it is not worse than it is, it truly is awful.  I have resigned myself to the fact that this is something I will never be able to give a proper name and that I will have to deal with the rest of my life.  I just wish the treatment was working.

It’s a terrifying thought that I will potentially be in pain for the rest of my life.  On the Brightside, I guess I can say that I now have a high tolerance for pain.

I am sorry for throwing the pity party.  Some days this really just gets to me and the constant pain I have been in today is exhausting.

Thank you to all of you for coming on the swim with me.  The ups and downs , its nice to have some company on the ride.

thXW3ORQP0

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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

Blue and Green Walk

This past Sunday I proudly walked in the Boston Blue and Green Walk .  It was to raise awareness for Organ and Tissue Donation.  My dear, sweet, momma was the recipient  of not 1, but 2 Kidneys.  She also received countless blood transfusions.  The need for organ donation is so high.  So many people are on numerous lists waiting and waiting and waiting for organs.  Life saving organs.

My mother was such a believer in organ donation and everyone being organ donors.  We were so very lucky that we had family that donated to my mom. My aunt and my cousin truly gave the gift of life.  They alone gave us so many more years with her that we would not have had with her.  There can never be enough thanks to them for those gifts.

It was such a positive day , full of inspirational stories.  We completed the walk, it ended up being about 2.75 miles. I had a huge NSV ( non scale victory ) where I actually did the walk without struggling.  Like for really reals, I did it and didn’t die, lol. Huge for me.  Maybe I am starting to turn a corner.

Here are some pictures from our day :

 

I only found out about this walk a few weeks ago, next year, I hope to get a big team together for it.

It seems like this month has just sucked on a whole.  I’m looking forward to some better days ahead.  Sometimes, we all just need a break.  I feel like that at some point we are all due to for that break.  I think its my turn.

Gotta 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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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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Daily Rants and Raves

Onward and Upward

Happy Saturday Everyone!

Well its been quite the week. Starting off on Sunday, my daughter and I took a walk out in the woods with my Dad lookin for birds.  She has become quite the little birder.  My dad set her up with her own binoculars, a field guide and a journal to keep track of all the new birds she sees.  I need to start walking .  Its just pretty painful with my arthritic knee.  In any case, I did he walk. I was dying .  By the end I was saying ” Just Keep Swimming” “Just Keep swimming”  It was a whopping mile walk.  I know I know -sad.

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I know its not much, but it was a struggle which in itself was eve more motivating.  I know this surgery is going to be a big boost for me if I do it right and follow the plan.   I did get a couple of pics of a butterfly we saw on our walk.

On Tuesday I started my Pre Op diet and had my preop testing .  I stocked up on Protein shakes, bars and greek yougurt.  I as stressing about it, but now on day 5 – I am feeling pretty good about it.  Its crazy but I actually felt good walking out of the hospital this week.

Looking forward to the next week ahead.

Hows your week looking ?

 

Don’t forget to head over to Facebook and give me  like.

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Daily Rants and Raves

Continuing the Journey

Hello World,

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How goes it?

Well, I have been continuing the weight loss surgery journey.  Latest steps were the Upper GI, which I thought was an endoscopy, so on the day of the procedure, I went to the endoscopy unit.  They looked at me like I had 2 heads, they told me I had to go back down to the ultrasound area.  I went there – that was wrong too. Ugh. Turns out it was an Upper GI and I had to go to this tiny room right next to ultrasound.

They call me in and I have to get into a gown and then they tell me I have to drink ” the stuff”.  Now, I had nothing to eat or drink prior to this, an it was later in the afternoon.  “The Stuff” is nasty.  I mean like heavy liquid chalk. It is technically called Barium something or other.  So they have me stand up against this table thing and drink, on command. I get shivers just thinking about it.  Then they tell me they are going to lay me back so I literally get to the point where I am laying down in this machine.

What better time to have me roll around ? Seriously.  Roll over, like I am a damn dog. A big huge, fatty mcbutter dog.  SO I roll over a few times , then I get to lay on my stomach and drink a different nasty drink  – with a straw ….. ooohhhh ahhhhhh.  Still gross.

Its over and the doctor tells me it looks like I do have a hiatal hernia.  My doctor had told me that this was common so I wasn’t too worried when they told me what they suspected.  Later that week, my doctor called me and told me that I do have the hernia and I also have a Schatzki Ring in my esophagus.  Never heard of that before, guessing most of you have not heard of it either.

A Schatzki ring, also known as a Schatzki-Gary ring, is a narrowing of the lower part of the esophagus — a muscular tube through which food passes to the stomach.

Now, I very rarely get heart burn or acid reflux.  I am not on any medication for them other than the occasional Tums.  But based on the Upper GI – I have to have an Endoscopy.  Like the real one this time.  I wasn’t too nervous – the nurse I had was very nice.  It’s weird, I had ” mild sedation” they said but all I remember is them putting the thing in my mouth so I wouldn’t bite the scope, then I woke up.  Nothing too exciting .

Because I am a crazy person, I am constantly checking my doctors patient gateway to see test results.  My endoscopy comes in and it confirms the ring , but then it starts in with some medical mumbo jumbo and I have no clue what it means. Even googling ( which is THE WORST thing you could ever do when it comes to medical crap ) and even then, I am still confused. So, I emailed the doc, then called, yeah, I am a pain in the ass.  He called me back tonight ( which I think is cool, that he called me tonight ) an told me that my endoscopy showed inflammation of my esophagus but it it not a deal breaker! I can still have the surgery !

Hooray !

I was really worried that it was something serious, but I am so happy I can keep on the path.

Next up the pre op diet – starting on 6/5.  2 weeks of the pre op diet to shrink the liver down .

Bring it on !

Whats new in your world?

Have a great week everyone!

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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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