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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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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Finally , an answer!!!!

That is right folks – I have an official diagnosis!!! No more Meganitis, I have been diagnosed with Stills Disease.  Now, all of you are probably saying to yourself, what the heck is Stills disease?

“Adult Still’s disease is a rare type of arthritis that features a sore throat, a salmon-colored rash and a high fever that spikes once or twice a day. Joint pain tends to develop a few weeks after these initial signs and symptoms”

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This is a disease that is ruled in once everything else is ruled out.  I am also happy to report the Humira that I have been been on for a little over  a month is working wonders! It has been such a long road, but it looks like I am finally in a place with a treatment plan.

I was so excited, I had to go tell my mother.  Yes, I drove from Boston to her grave to tell her.  I mean, I know she knew already , I feel her around me all the time, but I had to go tell her myself.  It was my routine , go to Boston , then leave , call my momma.  Tell her  the good, the bad, the frustrating,the infuriating, just the way I was feeling and what the next step was or what the plan was.  It is hard to leave these appointments now and need to call her and know that she will never be on the other end again.

In fact, it blows. Hard.

The reason I chose Brigham and Womens Hospital for my care is because of my mother. For 30 years my mothers surergies, transplants , ( yes transplants, plural) and several of her doctors were all at Brighams.  I was very familair with the hospital due to all the visits over the years, and the fact that it is a world renound hospital didn’t hurt either.  It was something I trusted due to the fact that my mother was so sick for so long and I feel , besides her larger than life spirit, that this hospital had a part in that .

When I moved a coupl of years ago, we are only about 20 minutes from the hospital, barring traffic. I would go see her during her various stays at the luxurious ” Brigham suites ” as we would call it.  It sucked that she was in the hospital butit was closer to me than her home was so, I took it.

Now that I am starting to feel better and have an answer, I owe it to her to Be Better.  I need to get back into my routine, which seems like I am forever saying . But I really need to.  Need to get some consistncy. I am also anxiously awaitng my sleep study results.

So, onwards and upwards.

I am getting in a much better frame of mind.  Trying to figure out who I am , what I want in my life, who I want to be – for me and for my family.  I want to actually achieve some goals in the next year.

Gotta just keep swimming and don’t stop believing

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Ice Cream Without Borders

I think Depeche Mode sang it best :

“People are people
So why should it be
You and I should get along so awfully

So we’re different colors
And we’re different creeds
And different people have different needs
It’s obvious you hate me
Though I’ve done nothing wrong
I’ve never even met you so what could I have done

I can’t understand
What makes a man
Hate another man
Help me understand”

Right now , in America, we are coming apart at the seams.  I don’t usually  get PC, but I just want to point this out – you , me, Bob down the street, the cashier at the store, every professional athlete, every politician, every man, woman , and child no matter what parts you were born with and choose to recognize –

UNDER OUR SKIN – WE ARE ALL EXACTLY THE SAME

Crazy = right? But seriously  think about it.  We all have organs, blood, veins, bones.  We are all the same, just wrapped in different packages.

If ice cream came in a box instead of a bowl or a cone- would you still eat it?

Damn right you would – who is gonna say no to ice cream? Its the same concept – same on the inside – different way of packaging it.  Ice Cream comes with nuts or without, chocolate or vanilla, sugar free or smooth and creamy. So many different varieties – it is awesome!!!  It is literally the beauty of ice cream.  What is your favorite flavor?  Mine is black raspberry or reverse chip ( chocolate ice cream with white chocolate chips, it is soo hard to find, if you do find it – do not deny yourself!!!)

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I think we should look at the world as our ice cream social .  All these different varieties .  And you know what ? If you don’t like one flavor, try a different one , change your add ins or your topping.  Throw some whip cream on that shit and hope for a big enough spoon.

If we as a people could stop being so focused on what we hate about everyone and start focusing on what we love about people , just imagine how great things could be for everyone.

So , instead of looking at each other how we usually do – lets start envisioning which flavor we are instead.  If anything – its gonna put a smile on your face!

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The Bittersweet Dance

I have been working on this one for over a week, forgive me for the past tenses.


 

 

After my mother passed away, my sisters and I decided to enroll all our girls in dance class.  The same dance studio that my mother went to , the same dance studio that we went to.  For years on Wednesday afternoons, we would make the half hour drive to Amesbury for our tap, ballet and jazz lessons. As I sat there waiting during my daughters class, so many memories flooded back. It didn’t  help that literally amongst the picture collages on the wall were some pictures of my mom.  Looking at her pictures, she was so full of life!  She was so happy. She loved dancing, she loved dancing school, she loved the family that owned the studio.  Its funny, so many people at her services commented on what a great dancer she was and how much she loved to dance, but honestly, I can’t remember when she was well enough in recent years to actually dance.  I bet it had been 10 years or more.

It was so bittersweet,  heartbreaking actually.

It seems like this week everything has been crappy.  I am still dealing with armpit issue.  They hurt so darn bad. Still.  I went to the doctors on Monday. More blood work.  If my levels were high, then Pet scan would be ordered.  My levels are elevated by not high enough I guess.  My doctor is also trying to get me on a different medication that may help me better.

In the meantime, I am still in pain and I am still sore.

I am struggling with my disease, that’s what the doctor is calling it.  Though the whole thing isn’t fully named, I am really having  a hard time.  I don’t know even how to explain it.  Just being is difficult.  It is hard getting out of bed, getting dressed, all my daily activities.  I have faith that I  will get an answer eventually  and that I will have a regimen that works for me. In the meantime though, Things suck.

I want to feel better, more than anything.  I am terrified that I am cursed with my moms poor health and that I am doomed to follow her path. And I know, I know, situations are entirely different , and yes, I am most likely being dramatic, but  I don’t want that. I don’t want to deal with this crap the rest of my life. I want to live the best life possible.  I just don’t know how to do this.

I am wrestling with my emotions and reality.  What am I supposed to be or do ?

I need to lose this weight. I need to be better and I need to move. But I can’t while I feel this awful on a regular basis . I need just need to have faith that answers and treatment plan will come soon .  Its hard .

My mother always saw the light through the dark.  The positive through the negative.  The love above loss.   I wish so much I could be like that , and I swear I am trying .  I just at a loss on how to execute it.

Hopefully one day I will rise above and be able to live this life the best way I can .

Until then, I will just keep swimming.

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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 

Signs on a Saturday

Hi everyone. How’s the weekend treating you ?  I had a very busy Saturday . Which I am already paying for . My body is screaming today . And I slept pretty darn awful . But let’s focus on the positives of yesterday . 

I made what is becoming my weekly pilgrimage to see Mum . This week my daughter picked out a red heart balloon that says ” I Love You” and we picked out a bouquet of various colored roses .  It’s hard for me to go to the cemetery. I guess it’s the part where I leave her there . All alone . I feel like putting in a couch there for us to go sit and talk to her , lol. I think though I want to get her some of those solar lights so it’s not so dark for her . 

I’m trying to deal with my mothers death in a healthy way , but really , how fucked up is that ? A healthy way ? What does that even mean ? How is any of this healthy or right ? Healthy should of been what she was . And right is definitely , what this is not . 

I also trying to get my emotions under control because the more upset I am, the more prone to flares I am.  I seem to be in a flare state since my mother died and I am in a lot of pain , physically and emotionally. I am hopeful my recent change in meds will help with this, but so far no . 

So ,back to my day . We go see Mum , then head for a quick visit with my dad . Then we head to get our hair done . My desperate need for cut and color and my daughters back to school cut . We get there early so we  walk around hunting Pokémon . Lots of walking around . We get our hair done , head to pick up my oldest from work and head home . The hubs and I went out for the night to celebrate our 18 year anniversary. 

We get home late and I am so exhausted. I’m trying to get to sleep when my daughter comes in upset about Nana. She is crying and inconsolable.  She’s clutching her bunny Pinky which her and Nana made together at Build a Bear . Seeing her like this just breaks me . I’m trying to comfort her and myself at the same time . So I tell her about the Signs . Signs that Nana will show her that she is there and with her . I tell her a story about how a cardinal came in the yard the other night while I was talking with my dad . How I know it was Nana . I tell her how even though she can’t hear her say “Hi Maddie , I am here ” she will let her know that she is there with her . I give her a blanket of my mothers for her to sleep with and I head to her room to tuck her in . When I get to her room she holds up 2 Beanie Babies . 

Wouldn’t you know ? ONE WAS A CARDINAL ! I burst into tears again . I told her that Nana was letting you know she was here already! I don’t know who it comforted more , me or her . 

Even in death, Mum is still looking out for us and giving us what we need . Absolutely incredible. 

One of my most favorite movies is The Crow. We even named our dog , Draven , when I was a teenager after the main character, Eric Draven. Mum loved that dog .  This is one of my favorite quotes from that film :

” If the people we love are stolen from us, the way to have them live on is to never stop loving them. Buildings burn, people die, but real love is forever.”


Real love . Real love extends beyond a significant other . Real love extends beyond our children , our parents . Real love is love we have for those in our life we would do anything for . Regardless of blood . 

Signs are real . Weather or not it originates in your head , if it comforts you , it’s real . For now it’s what I will believe in . 

Weekend Wrap Up

I had a pretty good weekend !  How about you ? 

I was up really early on Saturday , 4:30 am , had to be to work for 6 am .  Then it was a 10 hr day . Usually after working on Saturday  I need to take a nap . I was pretty exhausted when I got home but it was almost 5 so I just kinda relaxed . 

We had dinner then I decided I wanted to try and go for a walk . There is a rail trail about 10 mins from my house , so the hubs and I headed there .  

Lo and behold , I walked and survived. I survived all 2.4 miles !!! 

2.4 miles !!!!

I was dying at the end of the walk but I am so glad I did it . 

Then today , my daughter and I headed to my sisters house . First off was some Pokémon Go , my daughter and nephew had a blast . We walked around for a while, had some lunch , then headed back to the house for swimming . 

It was definitely not as warm as I would have liked but , I wanted to get some water aerobics (or my version of them ) in .


I was in the pool for about 45 minutes , running , walking , did high knees , jumping jacks and some actual swimming .  

Man , was I tired after that , honestly, still am .  But – again , I did it ! 

Not only did I get in exercise this weekend , I am down 8 lbs since I got back in the wagon ! 

Cheers to a great week everyone! 

Happy New Year!

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Happy New Year Everyone!

I’ll admit, I have been quite miserable the last few months.  Throwing a personal pity party for myself.  I’m sore, I’m cranky, my appetite is horrendous, medication makes me sick….I have been just ugh.

Welp, I am really going to try and change this around.

I need to honestly, or at least dedicate myself to dealing with this chronic pain better.

For those keeping track, we are on 2 years of my body telling me something is wrong and no doctors being able to figure it out.

Current symptoms include: all over body soreness, painful arm pits ( yes arm pits) , side pain ,chest pain,  my  ” necklace of pain” ( my throat and collar bone area ) , crazy night sweats, fire skin and crazy appetite.

First off, gotta get my meds under control . The metheltrexate i am on is really helping my knees and the arthritis that developed in them , however the medication makes me soooooo nauseous every day ! like every day! i wake up and just want to barf, but i never do, its awful. I just sit and wait for it to pass.  Then there is the Prednisone…. ugh, why do they make it so it helps you feel better but you become a ravenous pig?

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Anyone else have that issue with metheltrexate?  Or Prednisone?

So, my doctors solution to that was changing it to an injectable one, however since i have no “official ” diagnosis and Meganitis is not a recognized disease anywhere, my insurance rejected it.

Ugh. So i was going back and forth with my doctor in messages and getting no where, so I have an appt this Weds. Hopefully I can get on the right path here.

I also am DYING to work out. To say my weight has increased would be a complete understatement, I don’t even recognize myself. I was going to get back at the gym, but then I needed another PET scan and my doctor told me to hold off starting back up .

But, now I NEED to do something. So , I am hoping I can get the ok to start back up , even if its small, and hoping he can do something to offset the appetite.

I never realized just how many people out there are dealing with chronic pain, be it from fibromyalgia, RA or any type of Arthritis , MS, cancers, its really nuts how many people are in the world suffering right now. It’s incredible .

We all find our way to get through the day.  One thing that I have found to help with my daily routine is Plexus. It has been beyond incredible.

They only have a small amount of products, but they have been awesome.  The Plexus Slim, The Ease , The Nerve ,  they are all so helpful to me daily. My pain has yet to be eliminated but, it definitely takes the edge off.

Honestly, I catch a lot of shit from people for promoting Plexus, but if they had any idea how much it has truly truly helped me, they would understand. Thats why I share it all the time, if there is someone out there like me ( based on my research there are thousands) that could benefit from these products, as a human , It is my job to share it.

 

Since I am hoping to be able to start doing some sort of exercise again, looking for feedback from the folks out there suffering from chronic pain. What do you do ? Or do you find that it is too difficult to do anything ? There has got to  be something I can do .

Here’s to making 2017 a great year!

Blessings and love to you all!

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