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 !

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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 !

 

Don’t forget to give us a like on Facebook , too!

 

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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

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.

o-HAPPINESS-IMAGES-HAPPINESS-PHOTOS-facebook

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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Things to Think About

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

 

 

 

 

 

Things to Think About

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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