Things to Think About

The Eve of the Day That Could Change My Life

sweetbabymeg

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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

sweetbabymeg

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

sweetbabymeg

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

sweetbabymeg

 

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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

sweetbabymeg

Partner WOD. I hate the word.

As I hate hell, all Partner WODs.

Partner WOD is, in my opinion , the worst damn thing that can be on the board in the gym besides burpees.  For those that are physically unfit, the Partner WOD is our chance to drag down our partners and struggle to keep up.  That’s not exactly how it is, and if you ask any partner of the unfit, you will get the ” don’t worry about it”, ” no big deal response”.  But for me, its like a death sentence.

I know, I know , I am being super dramatic. But picture this if you will.  Me, being the new kid on the block again , not knowing ANY of these people and knowing how limited I am . And these folks, I am sure were like, ” Ain’t no body got time for her” (they were all actually very nice, but still ) I could feel the sense of fear in my eyes as the coach  was explaining the work out.  I even offered to do it by myself so I would not bring anyone down.  No go.

It’s not that I don’t want to be part of a team or have a partner – some folks are hardcore, balls the wall, keep track of every rep and push it to the limit.  I would never want to hinder anyone’s success. That’s my issue with it.  On the other hand , it is nice to have some one to push you.

So the way the workout went yesterday was partner 1 did a run, then partner 2 did a move.  There were 3 of us in my group, my set was based on one persons stuff, so when she ran, I rowed. Here is how I did:

35 min AMRAP

Row 506m (rowed while partner ran )

DB Hang Squat Cleans 7.5lbs ( ugh but man it was hard!) 26

Rowed 490 m

159 single jumps

Rowed 470m

Kettlebell swings 18lbs – 32

Rowed 438m

Hands Release Push Up – 13 (I was DYING at this point )

Rowed 460m

DB Hang Squat Cleans  15

Row 480 m

140 Single Jumps

So first off – it was an AMRAP and Any AMRAP I go into praying to the Gods that I can make it through at least 1 round . This workout I was able to due to the fact it was a partner WOD. So yeah , victory ! In my eyes . And I only said “Just Keep Swimming ” twice , lol. Those pushups, man , those were rough .

All in all , I am really happy with the workout I did . I was feeling great and dying at the end – so to me , total success! I really think these classes are going to be awesome for me .

It’s all coming together!

Hope you all have a great rest to your week!  It’s Thursday, that means I need to do my shot, it’s a pain in the ass but a small price to pay for feeling better.

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Daily Rants and Raves

Blue and Green Walk

sweetbabymeg

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

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

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

Here are some pictures from our day :

 

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

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

Gotta Keep Swimming!!!!

 

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