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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Things to Think About

Overcoming Your Fears

Hello my friends,

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

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

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

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

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

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

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

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

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

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

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

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

Just Keep Swimming everyone!!!

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Things to Think About

1 Month Since Surgery

1 month

 

It has been a month now since my surgery.  It has not been an easy month, but I am glad I am on my way.  Navigating how much to eat has been the hardest challenge.  I have been eating the same way for 38 years , its not so easy to change it.  Figuring out what to eat has been a challenge too.  And when to eat, and eating itself.  All the chewing……

I have been sticking to my shakes , chocolate for the most part.  Its so much easier to get down than the vanilla.  Protein bars and greek yogurt round out my days, then dinner is usually something chicken based.  I am feeling good overall.

I need to get exercising more. I have been out walking, but I think this week I will start some home workouts.  Or at least try.

My Meganitis for the most part has been at bay, which is amazing.  I still get exhausted and my fire skin is still raging, but the whole body soreness has gone away .  Well, except for the arthritis in my knee.   I am hopeful that as I lose more weight, my knee will feel better.  And I am sure exercising will help too.

Anyone out there have a workout app or program they use at home that they swear by ?  I know enough things I can do myself, just looking for a little guidance I guess.

Cheers to a new week!

Don’t Stop Believing and Just Keep swimming !

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Things to Think About

My Sleeve Gastrectomy : Day 12

Hello Everyone! Happy Hot summer !  Here in Massachusetts , we are expecting a heat wave , starting today .  Yeah for 90+ degrees – ugh. Don’t get me wrong, but 90’s and me are not exactly the best of friends.  With my Meganitis , I usually run hot . Fire skin is in effect most days.  But I am finding since my surgery , I am super hot all the time. Like sweat collecting on my face , super hot all the time.  I can’t tell if this is part of the Meganitis or  side effect from surgery .  Either way , I am a sweat hog.

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I finished stage 2 and I am so over protein shakes.  I tried in vain to add different things to my vanilla shakes, but good Lord was that such a fail.  Massive.  I somehow ended up with a surplus of Vanilla Shakes, I was just trying to get the most out of them.  I need to do some more experimenting, but pretty sure I am going to move on to some different products to make it easier for me.

I am thrilled to be able to have greek yogurt.  Yum City! My favorite right now are the strawberry cheesecake flavored ones, they are blended and delish.  Oikos and Dannon Light and Fit are my go to’s.  There are so many flavors, its awesome.  I know, I am a dork, excited about yogurt.  But its the little things that make the big things even better.

I was really struggling with my sips.  That seems to have worked itself out.  Thank goodness.  I am mixing up what I am drinking besides plain water.  Plain water never bothered me before, but now, I need some flavor yo!  I have been doing Propel water, and making sugar free crystal lite (okay so not “Crystal lite” exactly, more like Stop N Shop brand, lol )  in various flavors.   I take a gallon of water and toss in 2 tubes of mix and dunzo .

I was craving , craving , craving my potato soup. Now potatoes were not allowed on this stage, so I amped up my protein.  I made it with Bone Broth instead of regular chicken broth and instead of cream cheese, I used plain Greek yogurt. I also added bacon.  But what I also did this time which I had not done before was really pureed the shit out of the soup with my immersion blender. End result was a creamy, smooth, protein packed, delish soup which satisfied the craving while still trying and slightly bending the guidelines. But, I also used to put down 2 bowls at a time when I made this before, this time, it was half a bowl and I was full.

I am still tender on my right side , but other than that, I am not in any pain. Moving on to the next stage I really think my problem is going to be taking my time eating.  It is supposed to take me a half hour to eat a meal.  I am categorically a fast eater.  Slowing down is going to be a challenge, but I gotta do it.

I do need to get out for more walks – my kids and I strolled along the boardwalk in Newburyport yesterday. Even though it was very hot, the breeze was amazing.  Its one of my favorite places, and now it makes me feel closer to my Mom.  She grew up in Newburyport and she loved her hometown.

Its funny, after our stroll, we went to a little roast beef/ sub shop place and I remembered being a kid and going to Old Fashion Sunday, part of Newburyport’s annual Yankee Homecoming.  One of my aunts lived closed to the Bartlett Mall – not like stores in a mall.  Its like a park, with a pond and a huge fountain / statue ( honestly I cannot remember which ). Anyways , we’d walk down with my aunts, some cousins and it was just a wonderful time.  I remember the time we were there for the muster and got soaked.  Such fun times I cherish.  It was these little things that my Mom did with us that not only created the closeness with my aunts and cousins that continues to this day, but also  created fun and lasting memories on a budget. We did not have a ton of money growing up but my parents still created wonderful childhood for us and I will forever be grateful. So, I try to do the same, create moments with my kids.  I don’t know how I am doing.  I hope they look back and they are happy with their childhood and can say they had a good one.

At the end of the day, what everything comes down to , is family.  Not just blood, but the family we are given and the family we make.  Its my hope that by having this surgery, I can lose weight and do more to participate with them, do things with them.  Our trip to Disney last year, we were kidding around that I would need a scooter- actually it was a deep fear I would need one.  I don’t want that to happen again. I vow that will not happen.

Gotta keep swimming!!!

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Things to Think About

My Sleeve Gastrectomy Journey : Day 4

115Hello Everyone!

 

I woke up on the morning of June 19th early.  We had to be at the Brigham and Womens Faulkner hospital for 8 am . We left the house at 6:30 am since Boston traffic is so great in the morning – ugh.  We got in and checked into registration. At this point it was about 8 am and my mouth was sooooo dry , I just wanted to have some water, unfortunately not allowed.  But I was okay since surgery was scheduled for 10:05am , so I could deal.

After registration it was off to surgery check in.  I checked in and shortly fter they brought me to start getting ready.  Hubs had to wait while I got setteled. So all the usual jazz is done,changing , making sure all my info is correct, makng sure I am all ready for surgery.  At some point a very nice nurse came in and said ” Hi . I will be helping Sue with your IV.  ” Then it hit me, the nice nurse hat had been with me was named Sue.

Sign  #1

Now I had a chat with my mom before all this , and this was by far , her sending me a sign.  Then more doctors and nurses came in to introduce themselves.  Wouldn’t you know it – another nurse named Sue and a doctor named Frances.  Now, If thats not a sign -I do not know what else is.

At that point – I was fully convinced that my Mom was right there with me and everything would be ok.

I did go into surgery after 10:05 , I think it was more like 10:20 ish, but I really don’t remember.  I remember waking up super sore and out of it.  My hubs was there and my dad arrived after with some beautiful flowers.

All I wanted to do was drink some water.  But it this surgery – its got to be sips.  I seriously wanted nothing more than to chug the pitcher of water and chew on the hospital ice.  You know what I mean, hospital ice , is like the best ice ever.  You know….

I had some great nurses taking care of me through my first night.  Jess and Gabe were awesome.  I had all sorts of meds and I had to keep getting Heprine shots every so may hours.  They stung and bruised .  First challenge was actually going to the bathroom.  I was told if I could not go on my own by 10 pm, then it was the catheder .  Now, i know a catherder is not something anyone likes, but when I had my daughter , I was severly traumatized.  They put it in wrong and the worst pain of my life endured.  I still remember the feeling. So I did all I could to make sure I went . And I did… 🙂  I know, pee is super exciting, but the night got worse.  So I was in and out of it, one time when I woke up I was super sick, kept thinking I was going to puke, but there was nothing to puke. In addition to , I had horrible gas pains, like awful, kill me now, gas pains.  At some point I am sure someone told me how they pump you full of gas during the surgery . Welp, I do not remember anyone telling me that gas could get caught and cause awful pain.  So, imagin pain like heartburn times 100 burning in the middle of your chest.  It sucked. I was about to grab a scapel and slice a hole in my own chest to let some gas out.

So the moral of the story is – night 1, sucked.  And I cannot say enough about my team of doctors and nurses, they were so great.  Thankfully I woke up the next day and felt so much better. I got some walks in and was able to start shakes.

The thing that I am honestly struggling the most with is my sips.  It doesn’t sound like something that one would struggle with but it is way harder than I expected.  I am supposed to have at least 64oz a day of fluid and 60-70grams of protein.  Definitely have not reached that yet, but each day it gets better.  Its weird constantly sipping, but I need to make sure I keep it up. I do not want to get dehydrated.

And shakes – I have got to get some recipes to mix it up.  Really, I would love to just have some potatoe soup.  I am a ways off of that.

So here I am , ending day 4, looking forward to Day 5.  Its definitly a journey .

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