Things to Think About

NSV : The sweetest of all the victories

Happy Thursday Everyone!

Today I want to talk about NSV’s.  For those who are unfamiliar with the term, NSV means :

NON SCALE VICTORY :   a way to measure your weight loss program without the measure of a scale

NSV’s are great cause I find its those, that are the every day reminders of this journey.  My latest NSV happened this week.  I ordered pants on Zulily .  For those that have not shopped on Zulily – its great! Great prices , but everything ships out weeks after you order it.  As well as most things are final sale hence the lower prices.  But, I love it. 

So, I ordered some capris at the beginning of the summer. They arrived this week.  I ordered the wrong size. UGH. But I figured I would see if I could fit my fat ass in them anyways.  And wouldn’t you know?!??! My Fat ass fit in them! A size smaller!   

That’s a NSV!

Some other ones I have experienced :

Being able to cross my legs ( unassisted not pulling my legs up with my arms )

Able to walk longer with no issues – this I am so happy about!

Have fit into clothes without “W” in the size – not fully out of plus size but getting there

Here’s the great thing about NSV’s – they are YOURS. Whatever you feel is a victory . It is yours and you earned that shit!

So , I want you to think about that . What are some of your NSV’s?  I’d love for you to share.

Things to Think About

Planking with style

Happy Thursday Everyone!

I am not progressing at the gym like I would like. Mainly because I can’t get there as much as I’d like. Even though its only 2 days a week, its been a struggle. If I run late at work (which tends to happen at least once a week) I can’t make it to class on time. It is what it is. So, I was going to quit the gym for now until I can commit fully to the 2 times a week. They told me I could do 1 time per week. Its not ideal, but at least I know I can get there 1 time a week and I am still trying. I feel like this is a neverending journey. I am always going to have to try and keep at it. And for fucks sake, I need to lose these 15 lbs! Ugh.

Moving forward ! Went to class tonight . Let me tell you bitches…. I rocked it. I felt amazing! It has been a while since I left the gym happy with how I did or what I did. I am ALWAYS the fat chick. And with being the fat chick, comes modifications to the movements. Its discouraging but, I gotta move anyway I can . I really love these classes because the structure is perfect for me. Short intervals of all the movements.

Every class we plank. Multiple times . And multiple times a night i can’t hold the plank. Even though its just a minute, I usually break.

BUT NOT TONIGHT PEOPLE!!!! Thats right! This fat ass held each and every plank!!!! The whole time!!! Huge for me. I know it seems so small, but man, I was PUMPED!

Every class we usually use the treadmills. Again, short periods of time, but again its a treadmill and running. My nemesis. I have been working myself up to running every time. Its been slow going.

BUT NOT TONIGHT PEOPLE!!!! Thats right again. This bitch ran on the treadmill each time. Me!

I know that these victories are small and will seem small to most of you , but to me, tonight was freaking awesome. This journey has been so long, with ups and downs like crazy. Filled with disappointment in myself. BUT NOT TONIGHT PEOPLE!!! I am so proud of myself.

I have done Crossfit. Not perfectly , but I got some excellent training and form. I can say that , the moves I can do , I do have good form. Its getting the rest down thats an issue. I want to be able to do each move the proper way . I get so down on myself . But then I look over at the people in class, and I am doing some of these moves with better form. Another little victory for me! I am not judging everyone for their skill set. Just merely using it for my own self esteem, lol.

All in all, despite my being upset with myself as of late in the gym, I am so happy with tonight. It feels good. So damn good. Now my issue will be to see if I can do it next class!

Things to Think About

Meganitis, a beginners guide

Hello Everyone!

In the past week , I have had to try to explain Meganitis to new people that have come into my life. And I realized, its really difficult to explain this undiagnosed disease/disorder/sickness to people. So , in the neverending quest to get the information out there regarding this illness in the hopes there could be someone else with the same affliction and I could finally get a diagnosis. So here goes…

What is Meganitis?

Meganitis is the name I have given to a sickness that started in 2014. It started with enlarged lymph nodes. Multiple scans and tests, biopsies and the end result was inconclusive. That lead to more doctors, more tests and more scans, this time in Boston. Again , no answers. All tests showed that something was wrong , but nothing indicated what it was. Symptoms happen in a flare up and flare down situation. Unfortunately, this has not subsided and the symptoms continue to plague me to this day.

What are the symptoms?

*enlarged and sore lymph nodes

*whole body soreness

*extremely hot ( fireskin ) or freezing ( icicle skin )

*rash ( this was very early on and has only happened few times since beginning )

*night sweats

*advanced exhaustion

*elevated SED rate (bloodwork)

*elevated CRP ( bloodwork)

Is there a cure?

No. No cure as we do not know what it is.

Is there a treatment?

Yes. Thankfully. I have tried Prednisone, Metheltrexate (pills and injections ), Actemra, Humira – all failed. Currently treatment is Rituxan. I go for the infusions every 4 months.

Can I catch Meganitis?

No, you are not Megan.

I hope this helps in trying to explain Meganitis. I will keep you updated if we ever find a answer.

Things to Think About

Keep Moving Forward !

Hello everyone!

How are we holding up ? For me , life really hasn’t changed much in this pandemic . I’ve been lucky that I have been working this whole time . I still go to the store , still go to some restaurants , started back at the gym ; only difference is now I am always wearing a mask . I think because I really haven’t deviated from my regular routine that the weight of this year really hasn’t hit me …. until recently.

With the holidays coming , this blows . I am a people person. I love my family and my friends . I love seeing everyone . I love to hug . Check on your hugger friends – we are not okay . So all this combined , I think 2020 fatigue is a very real thing .

I really feel that the mental health of this country needs more attention. It’s going by the wayside and there needs to be some real conversations before it’s too late . I myself have started seeing a therapist and it is so helpful . Just to be able to talk or ramble as I do for an hour a week helps immensely.

We need to stop the stigma that surrounds mental health . It can be so detrimental. Now more than ever – speak up . Seek help .

Here is a helpful site to get started if you need help : https://www.nami.org/help

As you know I’ve started back at the gym . Mentally , this is helping me so much . I’m trying to regain my life , regain myself . Health wise , I’m under control. Doing my infusions has really been a game changer as far as my day to day abilities go . Just moving is easier . Everything is easier when you are not in pain .

The next box I need to check off is resuming the weight loss journey . I’m dying each time , fattest chick in the room, but I am really loving this program . It feels AMAZING to be working out again and to feel like I am working toward my goal .

If you learn anything from me I hope that it’s just that – have hope . Don’t give up ! Keep moving forward ! And most of all …

JUST KEEP SWIMMING !!!

I used to think that weight loss and changes would happen immediately. Like , “I’ve been eating good for 3 days straight and took a walk , why haven’t I lost 10 pounds ? “ There are no quick fixes , no short cuts . It’s hard work and you need to commit . Just gotta keep moving and not giving up .

Things to Think About

The Bitch is Back , Baby!

Hello my good people! How is everyone doing ? How are we surviving this global pandemic?I feel like I am always writing that I am back.  So , here I am . Not giving up. Still swimming, still moving forward.

I know a lot of you have joined me on this journey since the beginning and I am so grateful.  But for those just joining us, lets recap:

2013 – started weight loss program – working out on a regular basis – lost about 30 lbs during

2014 – Halloween – found lump and started my Meganitis journey trying to find diagnosis and treatment

2015-2017 intermittent time in the  gym , struggled with intense pain and exhaustion

2018 -June  had sleeve gastrectomy surgery

2019 – May started Rituaxan infusions

2020- November – back into the gym

Along the way , dealt with the pain and discomfort of Meganitis, making life much more difficult.

So, here I am.

2017 with Ross Marquand aka ” Aaron ” on Walking Dead
July 2020

I’ve come a long ass way and there is so much further to go. I am very excited to report that I have found a new gym!  It has been really difficult to find a program, that is what I am looking for and works with my schedule.  I have been very lucky that I have been working this whole pandemic so I had to find something that I could do after work . I was on my way home from work and I  saw a sign like 5 minutes from my office. 

The gym is called Pulse Fit.   I am really enjoying this program.  I contacted the owner and had my free introductory class.  Kicked my ass! And I loved it!  It a circuit training program with  the movements changing everyday.  It is super fast paced,but I am  starting to catch on ( I think) I just try my best. Honestly, I am terrible at 75 % of the movements but I do the best I can and I am happy with that. I like that it is short intervals of everything,like 2-3 mins,  cause that’s about as long as I can last lol.  Class is an hour long.  I am a dripping sweaty mess and its awesome.  I am dying  during class, but its a welcomed death.

I am really hoping this is the catalyst that gets me under 200 lbs.  A whole new world has opened up since I started my infusions.  It sucks I have to spend the day in the hospital every 4 months, but, 100% worth it to feel good. 

I am happy and am confident that I am moving in the right direction.

Things to Think About

Scar Tissue

“Scar Tissue that I wish you saw…”-Red Hot Chili Peppers

Howdy Everyone, Hope you are all doing well while we are still in the middle of a pandemic .

As most of you know , since Halloween 2014 I have been struggling with an undiagnosed illness. Flash forward to present day and we are at a place of treatment. I have been getting Rituxan infusions . We moved them up from 6 months to 4 months . It was great timing since a flare has been brewing .

Yesterday I had my treatment. I had a great nurse , they have all been pretty great and kind but yesterday, he was awesome . He sounded like Agador Spartacus from The Birdcage .

I’m a hard stick for blood work or anything to do with IV’s or infusions . So I make sure to tell whoever is doing the sticking where the best place is . It’s worked well for me and I have not been a pincushion since I adopted this practice . However , yesterday , upon trying to stick me , the nurse noted that I have a lot of scar tissue in my arm where I usually get stuck at .

It’s silly , but it never occurred to me that this could happen . It sucks. I am going to most likely be a pin cushion again.  It sucks cause for some reason, in the realm of this undiagnosed journey, I felt like I had some control over a tiny aspect of this bullshit. I could control where I was stuck. You know what I mean?

We moved my  appointment up from 6 months to 5 months, now I am at 4 months.  I think that is the  sweet spot.  The past couple of weeks I have had the exhaustion setting in and within the last week my armpits started flaring up as well as my neck getting sore too. I am hopeful that by doing the infusion now, I will not be subject to a bad flare this winter. 

So , infusion went as planned, no issues…. until Thursday.  Allergic Reaction. Ugh. I woke up with my face on fire and it was red, blotchy and I had some swelling.  To the point where I had to leave work and run to CVS to grab Benadryl.  I was at work so I only took 1 pill.  Didn’t work and instead I was kinda out of it.  I got a hold of my doctor who told me to take some more Benadryl and if that did not work, head to the ER.  So, I headed home to see if I could avoid the ER.  Thankfully , a few Benadryls and some sleep helped the reaction wear off.  I have had a reaction before but it happened when I was getting the  treatment, not the day  after. Just another way that Meganitis has a hold on my life.

Here’s the thing – for most people dealing with a reaction like I was having, they would of gone to the ER.  But honestly, what the fuck am I going to do in the ER?  Explain that I have been battling an undiagnosed illness that no one can help me with?  They would not know what to do with me. It would just be a waste of time and money.  In addition to the fact that I do not “look sick” . 

Scar Tissue is defined as ” Fibrous tissue that forms when normal tissue is destroyed by disease, injury, or surgery”.  My scars are all within.  I wish people could see what its like living in this body that lets me know how much it hates me.  I try so hard to not let this take over my life, so damn hard and I fail every time.

My nurse asked me what my pain was on that stupid pain scale 1-10. I said 5. He said ” Oh honey, I’m so sorry” ( all the while sounding like Agador Spartacus )

Truth is a 5 ain’t so bad. 

Maybe some day this will all go away. Maybe someday I will find away to cope.  Until then, I will try to keep the scars hidden .

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!

 

 

 

 

 

 

 

 

 

 

Things to Think About

The Eve of the Day That Could Change My Life

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Hello Everyone!

I know its been a while, I feel like I say this all the time.  It’s not you, it’s me, lol.  So, let’s catch you up.  Had the weight loss surgery and that has gone well. I am kinda stuck at 80 lbs.  Hard to move since everything hurts, so my exercise has been no where near where I need to be.  Meganitis has really been kicking my ass lately.  It really does suck.

Its hard to believe but I do try to not let it get me down, but sometimes, I’ll admit, I am circling the sinkhole.  Being in a state of constant pain is quite frankly exhausting.  But , there is a glimmer of hope on the horizon.  I have been through lots of medications trying to find a treatment that works while trying to figure out what Meganitis is.  I have done methotrexate ( Pills and injections), humira, prednisone, gabapentin, Actemra , and cyclobenzaprine ( at night ) .  Everything has failed or stopped working after a bit or lowered my already low immune system.

Which brings me to where I am at now. My Rheumetologtist suggested we try IVIG infusions .  After bloodwork, my IGa was really low which could cause anaphalactic shock apparently if I got the infusions, so I was sent to an Allergist , which was then changed into going back to the Immunologist.  Luckily , I was able to get in pretty quick to se him .  We went over everything and he told me that the IVIG infusions would help my immune system, as I would not get as sick anymore, but it would do nothing to help with my pain.  Big issue for me as the pain is my number one problem.  He suggests Rituxan.  Rituxan is an antibody that binds to a specific antigen (known as CD20 antigen) on the surface of B cells. B cells are a type of lymphocyte (white blood cell) that plays a role in the immune system and inflammation.  It is this reason that both of my doctors believe this will work for me.

My doctor told me that I had some ” Catastrophic Event” take place within my body and that I have not recovered from .  My body has been out of whack for four and a half years fighting itself.  This new treatment should reset my body and fingers crossed, may be the key to my survival.

Being sick, no matter how sick you are , is emotionally draining .  It really is.  For me, with no answers and my body screaming at me, I have thought I was going insane .  I don’t look sick, which makes it hard too.  On the inside , I am dying , but on the outside  (as unhappy as I am with my looks ) I don’t look sick.  This whole process has been so draining on me .

And now, I have a chance I feel, the best chance I have had yet.  Tomorrow I report at 8:30 to get my first Rituxan infusion.  They told me prepare for 6 hours.  My son will be going with me to drive me home.  I am super nervous.  I don’t know why.  I think its because I have so much riding on this. The chance to feel better.  Its crazy to think that in just 4 to 6 weeks, my nightmare could be a thing of the past.  I am desperate to feel better and I am hopeful that this could be my big chance.  It’s hard not to get my hopes up, but I need to maintain positivity.

So , wish me luck folks!

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Things to Think About

Days Like Today Are The Hardest

Sup yo.  How is everyone doing tonight?  I know it’s been a while since my last post.  Sorry about that.  Things have been kinda crazy as well as I have dealing with quite the Meganitis Flare.  Yup, full on FML mode.

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So , yeah the flare is super great.   After 4 and a half years , I still have all the same symptoms ( except the rash, thank God ) and still no answers.  I live in constant pain, some days are better than others. And I have come to accept that Winter and the cold make it worse.  I feel better in the warmer months, I would love to realize that I am in no pain, honestly don’t see that happening , but a girl can dream.

As far as my weight loss surgery goes – its great, down 80 lbs!  I need to work out . That has been difficult since the daily pain plagues me.  But I keep trying to make better choices , definitely navigating better though.

Which all brings me to today … I am determined that this will be the year I put a name to what I refer to as Meganitis.  My rhumetologist is great, but I feel like we keep going in circles.  The plan has been to treat the symptoms rather than dig deep and get a diagnosis.  And, I was okay with that . I just wanted to feel better.  But now, I am at a point where this bitch needs a NAME!  I feel like if I have a name for this – I can effectively treat it.

I am all out there. I wear my heart on my sleeve, I cannot keep shit in. I am very open about my condition and my struggles. The reason I am so open about it is, what if that one person I share my story with has the same issues or knows someone that does. I do not want to miss out on the opportunity to gain knowledge about this or to help someone with what I have done to cope.  In being so open, people always have always told me that I have this or I have that , or I need to do this or I need to do that .  As much as I appreciate everyone’s concerns and I know that everything comes from a place of love, none of them are doctors.  But, what I do is take the information people send my way and I do my own research as well as discuss it with my doctors.  Sometimes its a very easy answer why XYZ isn’t my thing and sometimes, its like okay , lets do some tests and blood work and see what comes up .  Normally , I would say that doctors throwing shit at a wall to see what sticks would be insane. But I am lucky that my doctors are all in agreement that I am a unique case and listen to my concerns.

This all brings my to my latest appointment today .  Blood work .  My PCP is doing a whole complete work up and according to the records, giving me tests that I have not previously received. With so many doctors in different locations, something gets lost in communication.  I get it.  It happens.  But that’s also the reason I have my binder of  tests, procedures, and surgeries.  Someone’s gotta right?

My mother has been on my mind lately , more than usual. It hit me like a ton of bricks today .  You see, every appointment, every lab visit, every text or email from the doctor, I would call my Mom when I got out.  Just to tell her what happened or what was happening or the plan for the next visit .  Talking to her always made me feel better, most of the time I leave frustrated and she always knew what to say to ease my mind.  I walked out today and grabbed my phone to call her.  Like auto pilot.  Cried all the way back to work.

Grief and loss , I have yet to find the way to deal with them in  good way . Mostly I am just a crier.  I miss her so damn much, my heart hurts. I know she is around, I do get her signs, but nothing will ever be the same.

I read this today on a Grief and Loss page and it really struck home.

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Go ahead, have a good cry . I know, you feel it too.  I miss her immensely, but it really is these little times that creep up and hit me hard.

I really am focused on getting answers this year .  I just hope I am successful.

You know what I say … Just Keep Swimming!!!

Until next time folks !

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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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