No blog post in almost 2 years!

Sorry, not sorry.  I'm a busy person, and just got so sick and tired of bitching and complaining.   I try to live my life in the moment, and not focus on the bad.  Not always easy.  Nothing has made me want to write about what's been going on in my life, until last night.   Random, I know!

I was getting myself ready to go to bed, and saying goodnight to my girls.  Bella was present as I was drawing out one of my weekly injections.    She stayed and watched, and for the first time said to me "I'd offer to do it for you mom, but I don't think I can."  She doesn't mean she wants to take the injection FOR me, she means she'll give me my shot. For the past couple years, I always ask "hey, want to do this for me?" And they usually just say "no way!"  I ask them this, well ...because some day I may not be able to do them myself.   One of my injections is an auto-injector, meaning- I don't even see the needle, I just press it against my skin, and it injects me.   One injection, I have to draw out myself, into what I would call is a diabetic hypodermic needle.  It's the smallest needle there is, so it hurts less.   Bella watched as I pinched my skin, and counted to 3, probably six times, while pinching my skin, before I actually stuck myself.  She said "mom, you're so brave."

Brave.

I looked at her and said her and said "Brave?  Bella, it took me six tries before I could even stick myself."  And I laughed.   Then I said "I don't look at this as being brave.  But thank you.  Firemen, police officers, soldiers are brave.   I do this because it's a necessity.  Without this, who knows, I could be in a wheelchair by now. ". Bella is just looking at me, with her beautiful brown deer eyes.   I then said, "Bella,, it's almost selfish, but  I need to do this, because without it, I couldn't be out there everyday, watching you, and Grace, and Sam, on the field, in the dirt, or on the court.  I'd do anything to keep myself being able to see all that."

She hugged me, said "goodnight.  I love you.  And I think you're brave, Mom"  ❤

This is my life....

(As of late...)

 And this is my life....

And I am so fucking tired of it!  I don't complain a lot.  I don't say much, in fact. It's something I deal with, because I have to, and life goes on.   There are much more important things.  I think so, anyway. 

I'm fucking tired.  I'm sore.  I'm bitter, and angry, and sad.  Did I mention, I'm tired? Exhausted. 

Things have to change.  I have to commit to change.   I'm so close to being ready.  But I am so tired.  

Be well, 

Mb

Maybe not today, but most days!

Important things- 2014

Just a couple more days!!!

Words to live by lately. Or, forever.  

A day for love and family, Merry Christmas!

It's been a LONG time since I've blogged.  I'd apologize, but I'm not necessarily sorry.   Just tired of my life revolving around my sicknesses.   

It's the eve of Christmas.   I'm not necessarily in the spirit like I usually am.   Life has been crazy, rushed, busy.   None of the things that the holiday should bring.   I, and people I love have been impacted by hard times, death, tragedy, sickness- things that are hard to overcome at this time of year.  So this Christmas, I don't care about the presents, the food, even the booze that I normally consume at great lengths- the most important thing is that I am here.   I am present.  My family is healthy, I have a roof over my head, food on my table- and I am here for the people I love whenever they need me.   Those I care so deeply about are clawing their way through- and they will get there.  They'll get there by the love and strength of family, friends, great people who will help them through,people who I am proud to say, are like me.  

Take a minute today,(though I know you probably will!), and remember the good times you've had with those who can't be with you.  Gone too soon, gone this year, or gone even long before.   Laugh about some memories, and smile with some love in your heart.  Today is the 25th anniversary of the death of my father-in-law. No, I never had the privilege of meeting him, but I feel like I know him through the stories, the pictures- the good times that my husband and his family talk about and remember.  I know he would be so proud of his children, and would've loved to know his grandchildren- even his two great grandchildren.   I know he is watching over us and smiling. 

My wish for everyone this Christmas, is that you get to spend it with those you love.   Take some pictures, laugh and smile, and may you find love, good health and happiness in the new year!

Merry Christmas, 

Mb 

Been a while!

I've been keeping to myself.   Maybe good, maybe not so much!   Been thinking a lot today.  And I think there must be some reason I have been riddled with the diseases I have- there has to be!   I'm just at the point of giving in, laying down, playing dead- but I won't let any of it get  the best of me!  For there must be a reason I am fighting this, but there are many more reasons I will win! 

Slinking away slowly, but smiling as I go!  

Be well,

Mb

One day post...

...being back on both medications.  I've been sick as a dog all morning.  You'd never know if I didn't tell you.  I'm up, dressed and having a fabulous hair day!  Fuck you RA- you will never beat me!!! 

March - in like a Lion for sure!

Hi, I am Maribeth - I have RA and newly diagnosed Fibromyalgia, and it has been 3 weeks since I have last taken medication - and I have to say, my body has never been in more pain!  You will never hear me complain too much, as I HATE to even seem remotely vulnerable, but I can tell you, I am so not well! The most I can take right now is tylenol(tylenol doesn't do shit!) , or I could ironically take narcotics, which I have none of!  My bigger problem right now, is the ignorance of others. I know alot of people just don't get it, but believe me when I say,"I can barely walk" - because I am not even exaggerating!  Being off my meds for this long, has thrown me into a serious full fledged flare.   Some have asked, "well, why don't you just put off your surgery?"  To which I will answer: 1 - I have already put this surgery off, over a year.  My tumor has grown, if I continue to put it off, the tumor will continue to grow and that will make for a more invasive surgery.  2 - Someone like me, who has the AI diseases I do, this is the way it goes.  No matter when I have surgery, I have to go off my drugs for this length of time, or else I have increased chances of infection, and not healing - all of the drugs I take inhibit my ability to heal - they are Immuno Suppressants, look it up if you need further explanation.  I knew what I was headed for, which is why you won't hear me really complain, except for right here. 

Any who - surgery is Wednesday.  I am very anxious about the pre-surgical stuff that needs to happen.  I was with my mother every minute of her surgery for the same exact procedure, and it was a very long, hard day for her - I just hope mine goes better.  I know I am lucky, I don't have Cancer, but it is the same exact surgery whether you do or don't. Going into this, already in very high pain, I just don't know what to expect - so please, good thoughts only! 

Until next time, which will most likely be post surgery,
be well!

-mb

I'm petrified of the condition I am going to be in over the next few week...no Enbrel Injections for 6 weeks, last Saturday being the final one before surgery....

I met with my Rheumy team last week to go over my game plan as I prepare for the lumpectomy. Due to the medications suppressing my immune system, (all the medications I am on make it so my body would not be able to heal after surgery), I need to be off the Enbrel injection for 3 weeks prior, and 3 weeks post surgery.  I also need to be off the MTX shot for 2 weeks prior, as well as 2 weeks post surgery.  I have been in such bad shape the last 3 weeks with the flare, that I have had to up my steroid dose, I truly feel if I had not upped it, I would not be walking right now.  So, I also have to try and get lower, if not completely off of the steroid in the next 3 weeks.    Another downside to all of this, is at 12 weeks we would assess whether or not the Enbrel shot is working for me, but since I am at week 9, and won't be doing another injection for 6 weeks - I will basically have to start over after surgery, and see if this medication is truly helping. 

Are we not stuck in the winter that will never end?   Between the cold, and snow, I feel like my body has taken an extra beating.  I am never one to rush away the snow, as I truly adore it, but I can't wait for warmer, sunnier days. 

I am taking the next couple weeks before surgery to map out a new game plan, and when I am healed -  I am changing things.  I'm not happy right now and can't waste any more time - so with the Spring will bring change, I can't wait!

Until next time, be well!
mb
xo

MRI tomorrow!

I am very happy that my surgeon was able to expedite my Breast MRI- it's tomorrow morning, with results later in the week, or just in time for my birthday!  Praying nothing else comes up, and we are only removing one tumor during the lumpectomy come early March!  All positive thoughts thrown my way are appreciated! 

Be well, 

mb

checking in!

First I need to boast, though most of you that follow this blog already know, but my girl Bella won the hoop shoot free throw competition for our district on Saturday, and has moved onto the state finals next weekend!  We are so proud of her!

Today we got a chance to visit and spend some time with our amazing little "great" nephew, Philip.  Those of you close to me know that he recently underwent surgery to remove a brain tumor.  He is recovering well, and back to his cheerful, silly, wonderful little self. Children are so resilient, and they amaze us day in and day out!  We continue asking for positive thoughts and prayers for him!

the craziness of life has taken over! Along with working a few days a week, and raising our adorable new puppy Stella, there is Softball, soccer, baseball, hockey clinic.  Just a few of the things that I need to be ready and able as much as possible for.  So I can't let RA/PsA get me down!  I am feeling much the same, probably a little worse.  I am suffering daily ankle pain, as well as continued pain in my left foot.  A new "pain" has set in recently, a shooting pain down the side of my left leg.  Back pain is a daily thing, and I have recently seen a specialist, and have had both an MRI on my neck and spine.  My back pain is not all related to RA/PsA, so time to get some answers!  

Most of you may remember that I started to write in this blog again, just over a year ago after a scare immediately following my first mammogram.  I went through the roller coaster ride of waiting for test results to find out if the tumor they found was benign, or cancer.  Benign it was, but it was still being monitored every 6 months because with the kind of tumor it was, growth was inevitable.  I went back last week for my yearly mammogram, and 6 month ultrasound, and though my mammogram thus far has come back clear, I have found out that the tumor has grown.  With the last year being a whirlwind of nothing less than horrible events, and my mother being diagnosed with breast cancer in the thick of it all, I have decided to undergo a lumpectomy.  I will have surgery in early March, and have the tumor removed.  It wasn't an easy decision to come to.  After seeing my surgeon, and going through my recently changed family history, we have discovered that I am now a candidate for further screening - we have also discovered that I have a 24% chance of getting breast cancer, that's 1 in 4 chance people!  So along with a yearly mammogram, I will be having an MRI.  This MRI will pick up anything that mammogram may not, and though the chance of false positive cancer diagnosis is there, my surgeon has assured me that anything that does come up, will be removed and biopsied.  We are hoping to get this done in the next couple of weeks, before my lumpectomy, so that if anything comes up, we can take care of it during my scheduled surgery.    So again, I put it out there to all of my friends, if you are in your mid thirties, or have a family history of breast cancer, please, GO GET A MAMMOGRAM.  Early detection saves lives.  It could be be mine, or it could be yours! 

Until next time, be well!
mb

This is how I spend my Saturday night....

......so I can walk from Sunday - Friday! (I limp around from Thursday -Saturday, with nausea on Sunday and Monday, usually TMI on Tuesday* and exhaustion at its worst on Tuesday and Wednesday!) 

 

That's a host of medications, two of them being injections.  3rd week of the Enbrel injection.  Praying, (and lately I'm not a girl of prayer!) that it starts working!  I've taken myself almost completely off the steroid, as well as the sulfa med, with hopes if remission soon!!!  

*TMI is code for something 😜

Oh Stella, you are definitely meant to be in this family!!!

Yesterday while visiting family, our little Stella was out playing with the kids when she slid on some snow, fell over and then proceeded to not be able to walk!  I was able to touch/rub/check all of her, and it appeared nothing was  wrong, but it was as if her right front leg was out of its socket or something but there was no crying, nothing, unless she tried to walk.  Steve and I took her to the vet ER  (yes, they have them!!) close to my sister in laws house, where I had visions of humongous vet bills, doggy surgery, broken legs, etc. and after an hour wait (nap for Stella!) I brought Stella out to pee, placed her in the grass fully prepared to hold her up if need be- and she was able to both stand up, and walk with a slight limp.   We waited to see the dr and just be sure all was ok.  The dr says it was quite possible that her shoulder could have came partially out of her socket, and we could've  popped it back in when we checked her out ourselves.  

Steve and I laughed after, we were like two parents of a brand new baby.  I almost felt foolish for bringing her in, but with three devastated kids left back at my sister in laws, there was no way we weren't getting her checked!  Thankfully, all is ok, and Stella is supposed to " take it easy" the next couple of days! 

Here is a pic of Stella, lazily napping in the puppy ER!  

Proven yesterday, Stella belongs in this family, with a visit to the ER in her first 10 weeks of life! ;)

Winter blues....

...they can't get me down!   At least, I will try to not let them!  On a day where I have every hour scheduled, I wanted to take just a moment to check in.  I have been frantically running around the last few days, trying to get things set, so I can head off for a long weekend away in Florida, a chance to root on our boys, The Patriots, as they squish the fish on Sunday! I can't wait for some fun in the sun, and some warm air on my sore achy joints!   I am actually here to complain a little...what other mom friends will sympathize with, my husband does not !  What he is not realizing is that in order for us to get away this weekend, I need to have so many other things lined up!  Setting up a babysitter, making sure there is food in the house, lining up rides, and school, and drop offs, and pick ups, doing laundry, not just for the kids, but for us to pack, (you think He is capable of doing that himself???), and lets add on the fact that Christmas is in about 12 days or so, and I have to shop, wrap, hide, and also the Christmas Party we are hosting the weekend prior...no problem to cook, clean, organize and be calm so you can entertain 75 people in your home...no problem at all for a person who has no strength in her hands, has days of pain and weakness, and who has bouts of nausea and all the other "fun" stuff that goes along with a completely invisible, debilitating disease!  Don't get me wrong, I am looking forward to every last minute of it all, and I work best under pressure, if I do say so myself! But just for once, I would love it if my husband showed me the empathy that I get from others...I'm not in no way badmouthing him, I am just wishing he would "get it"!

Next Week is crazy as hell as well!  I am scheduled for a bone density, nurse appt to "learn" how to give myself my newest injection, as well as an appt with my Rheumy. - all in the same day.  Why I thought it was a good idea to schedule it the week before the kids get out on winter break, the week I have to pick up my son from college to come home for the holidays, the week that my kids have holiday shows, xmas parties, and all that fun stuff...I have no idea why I thought that was a good idea, BUT - I am looking forward to the next step, starting a biologic, along with my MTX (chemo shot) - and praying to find some relief and kick some RA ass! 

SO, if I do not get back online, to blog, post on FB, or any of that other stuff, I just wanted to wish everyone a very Merry Christmas with their loved ones! 

Be well,
xo MB

It's been a minute..

...or two since I last checked in!  Happy to say, I am alive and doing what I would think is pretty well.  I took a bit of a hiatus from bitching and complaining, because honestly, I was sick of hearing myself! It's been a rough year for me and my family, things have happened that sometimes I find myself sitting and thinking, "Is this really my life?  How did I get here?"  It just seems that it has been one bad thing after another, and if you've ever been faced with a similar situation, you know as well as I do, people really don't want to hear about it, so that is usually when I take a step back!  

So - Here I am after two nights or barely any sleep, on the cusp of thinking that MTX is finally working for me,  when I realize I am definitely keeping my appointment with my Rheumy-NP this week.  I am ready to try something new.  I am really ready to dive in, and move past this time in my life.  I hit a bit of a bump about a month ago, and had some other health issues come up. I have been back and forth to appointments between different doctors, blood labs, etc.  I am really ready to feel good again!

The Holiday season us upon us, and we all tend to get lost in the hustle and bustle of busyness of it all, this year I am going to be sure to take the time to be grateful for all that I have, and forget about all the other stuff that brings me down - if you have similar struggles, I hope you get a chance to do the same.

Happy Veteran's Day to all, and though I think it's not enough; I say thank you to those who have, who will someday, and who are out there right now - fighting for our freedom, a million times, thank you!


Until next time, be well!
mb

Mid flair..

Mid flair fever!  So along with pain, and all the other crap- the feeling like I am burning up! Good times! 

Race for a Cure - Done!

Love my girls!

Me and my sisters! <3 p="">

 

 

Our "team" raised over $3,700 with donations still coming in..all walking for the same reason - to support mom! 

Mom in the middle, surrounded by all of us in this fight with her!

 

 <3 p="">

I can't say enough, how proud of my kids I am.  To be dedicated to a cause, and helping others! 

With Grammie - my kids would do anything for her!

 

They are in this together - walking, running, whatever...together!

When my girls saw the roses at the finish line, they had to get some for Grammie!

 

 

 

I know I have thanked everyone, but I can't say it enough!  The support we received from our friends has been astounding!  We have all discussed, and agreed that it's an eye opener. Those you expect the support from, don't always pull through, and then those you least expect it from, pay it forward without a second thought.  We are so blessed to have such good people in our lives!

 

Next year , we run!  This weekend's Race for a Cure was the start of a tradition.

 

Everyday there seems to be new news of someone I know who has been diagnosed.  Cancer, in any form, does not discriminate.  I stand with my best girlfriends every morning, and we look around and wonder if one of us will be next.  I will continue to do what I can, to help raise funds and awareness, until there is a day when I don't need to worry for myself, my mother, my sisters, my daughters, and my friends.  Someday there will be a cure!

 

 

Damn you RA!!!

I ended up with a blister on my toe last Monday when I wore closed- toe "cute" shoes on a cool day.  It has been so sore and has bled every day since!  I heal a LOT slower than most people who are not on the chemo drug and steroid!  I wore sneakers today and took them off to a blood filled sneaker and sock!  Afraid I may be infected and I am going to have to call my dr and see if I have to stop my med and allow it to heal!  My walk is Sunday, and I will be damned if this stops me from walking!!!!😩

Hello Autumn!

Autumn has always been my very favorite season, but this year I seem to be embracing it's return more than ever!  Cooler days, no humidity, and not yet freezing my ass off  - ideal weather for my body now.  I feel excited to check the weather and see it's supposed to be a crisp 65 - I only wish it could be like this every day!  :) 

The past week I have been feeling much better than how I was feeling in my last few posts.  I find myself planning more and more activities that I usually have to second guess.  This Sunday is our Race for  Cure, and with Sunday's and Mondays being my toughest days, I can only keep wishing that I will be in prime shape come the 29th.  I want to again thank everyone for their continued support.  I still feel so humbled by the amount of people who have made donations to us.  I have said it over and over, and will continue to say it - as much as Cancer Sucks, it has a way of bringing people together. 

If anyone can make any last minute donations, here are the links to both my personal fundraising page, and the kids page too!

http://www.komenmassrace.org/faf/donorReg/donorPledge.asp?ievent=1079598&lis=1&kntae1079598=651EC50F09EB4DBEA3D290BD2689B0B8&supId=389825087&team=0&nmv=true

http://www.komenmassrace.org/faf/donorReg/donorPledge.asp?ievent=1079598&lis=1&kntae1079598=BDDFA8713AA341C894369DB1CE918092&supId=390483145



From time to time, you will be surprised to see that I have nothing else to say.  I have no real  complaints today, and for that I am thankful!  :)

Be well,
MB