Things to Think About

Demons of Pain

If you are one of the lucky ones like me that deal with pain on a daily basis – here is a soft high five for ya!  My normal daily pain I would say is about a good 7 or 8 on that happy little pain scale at the doctors office.  You know which one I mean,right? Standard-Pain-Scale

They should have a chronic pain scale that goes higher.  This past month – I am a solid 11.  Spinal Tap Style…. ( you millennials prob don’t get the reference, google This Is Spinal Tap ) It royally sucks.   I know I have bitched about this before, but it fucking sucks.

Not knowing what is causing my issues fucking blows.  If I had a cause, I could treat the cause instead of treating the effect as we are now. Like, if you have cancer – you get chemo, diabetes – you take insulin , cough -cough drops.  I am stuck with no cause.

I am at the mercy of my body giving me no symptoms or warning – the flares just hit and  I am in the middle of a long one.  I know it could be worse and I am grateful that its not but this shit is getting old.  I have been doing my Actemra shots each week but currently I am waiting for my shipment to arrive. Specialty pharmacies are great, lemme tell ya.  So I was getting my shots from CVS Specialty pharmacy, but I got a new health insurance and have to go through a different pharmacy. I was on the phone with them all week, they kept transferring me to a voicemail that specifically says ” leave your name and number….blah blah blah and we will call you back ….YES, WE WILL CALL YOU BACK ”  Left messages all week and finally complained that no one called me back and I got to speak to someone.   Problem is that I needed to take my shot on Thursday night. Its Sunday. And my shipment won’t be here til Tuesday.  They did say I would not have to pay the co pay for my trouble,but honestly, I don’t care – I just need my meds.  Ugh.

It sucks to rely on something to feel better , even when its not working good.  But the potential is there and it gives me hope.

I have thought about going back to the drawing board and taking all of my tests and starting somewhere new, like a 3rd or 4th opinion.  I don’t know if that would be worth it or not.

I am sorry this is a pity party, but  I am frustrated as hell.

I haven’t been to the gym in  a month and I am pissed. But I hurt.  Its hard enough to be me day to day and get through what I need to .

In other positive news – I am still steadily losing weight.  Currently down 72 pounds!!!!  I am definitely navigating eating better.  Thanksgiving was different this year, had to really pace myself and certainly did not eat nearly as much as usual.

So, I have been thinking.  There has got to be some medical student , some doctor, some medical professional who is looking for a case.  Who wants to be the person to give an actual name  to Meganitis?  I am serious.  If you want to take a crack at it, hit me up!

I don’t think that its too much to ask to ween the daily pain down to a 4 or a 5 if I won’t ever be without it.

I just gotta have hope that eventually I will have an answer and feel better.

Until next time folks -Just gotta keep swimming !

img_1087-2

Daily Rants and Raves

Frustrated in Undiagnosed Land

 

1mb7xt

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

img_1087

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.

img_1087-4

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!!!!

 

img_1087-2

 

Daily Rants and Raves

A good workout a long time coming

th

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.

img_1087-2

Things to Think About

Overcoming Your Fears

Hello my friends,

Well, this weekend, I overcame a big fear of mine.  I went to my 20th High School Class Reunion.  I wasn’t going to go, honestly.  But I made a last minute decision to go, and I am so happy I did.

If you are a reading of this blog, you will be aware of my long deep seeded self esteem issues. I was not popular in high school, but I had friends, I was however – skinny.          So skinny I thought I was fat.  (This current  body is God’s cruel irony ) So, given my current status – I weigh more than 100 lbs than I did in high school.    I was not not exactly jumping on the high school reunion band wagon . Not that I could give 2 shits about what people think of me, but I didn’t want to be THAT person…. You know what I mean.

The more I thought of it though, my friends that I still keep in touch with from high school would be going, it would be nice to see them.  Then my mom crossed my mind.  She was Miss School Spirit.  Cheerleader, color guard, on her reunion committee, if she was here, she would of made sure that I went.

So, I went .  Not only did I go, but I put together the slide show for the event.  ( And it worked, lol! ) My mother would be so damn proud.  I had an incredible time.   It was wonderful .

I did get dressed up.  My sister Caitlyn did my makeup.  I felt good.  My fears melted away.  I danced the night away with my gals.

When I was in high school my depression started.  I felt horrible about myself, for no other reason than I was a moody teenager.  No one made me that I way, I just was.  My depression has followed me ever since , like my shadow.  I would not say that I am as depressed as I was in high school, but I could definitly say that I am depressed.

It was weird, I got anxiety.  Like super anxiety, on the way there.  I wasn’t sure if people would recognize me.  Granted ,I have been over weight since right after high school, but I just felt super self conscious.  To boot , our name tags had our senior pictures on them, so I was dreading wearing my old face all night while people would be seeing my current face.

In the end, I overcame my fear and went to the reunion.  I had a great time and those little fears I had going into it faded away .

img_0076
Name Tag – Old face lol
img_0046
Welcome Sign
img_0052
DJ Area
img_0047
Classmates we lost
img_0065
Photobooth Fun – My favorite is my boa flower face bottom right , lol
img_0061
This cake was super delicious! Made by my friend, Jennifer Patterson of Patty Cakes, Rochester NH. SO GOOD!!!

My next fear I am trying to overcome is my Meganitis. I have been relatively flare free since February when I started the Actemra.  Which has been amazing!  But lately, little things are creeping up.   My armpits were hurting last week, my fire skin is acting up ( though that really never went away ) , the advanced exhaustion that I get hit me like a ton of bricks the past few days , and today , I noticed I am sore. Mainly my legs, and not my arthritis knee,which fucking sucks.

We are in the midst of a crazy heat wave right now, its been in the mid 90’s, I am really hoping that my symptoms subside when it gets cooler.  Tomorrow is shot day, Thank God.  As much as it sucks not knowing exactly what my Meganitis is, at least I have holding it at bay.  My fear is that another flare stretch is coming on and if its as horrible as the last one, I just don’t know what I will do.  I am keeping an eye on it.  I am thinking a visit to the rhumetologist is in the future, BUT I am going to be positive and not let the fear of my  unknown assailant take me  down.   Fingers crossed that this passes .  Especially now that I am trying to get my ass back into the gym.  I need to workout.

All in all , fear can swallow us whole if we allow it.  Overcoming it , now that’s the challenge.

Just Keep Swimming everyone!!!

img_1087-4

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.

img_0018

Hug your loved ones tight and make every day count.

As Mum lived by =Don’t Stop Believing !!!

img_1087-4