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

Rheumy Visit...

I saw my dr today.  I really do love her, despite the fact that her staff is made up of idiots.  She spent a good amount of time with me.  Frustrating little tidbit of information, all of my bloodwork came back perfect yet again, so MTX isn't causing any ill side effects that would warrant stopping it.  One of the things they test is your inflammation level, and my level was < 1 .  That's less than one!  I can't even imagine how a person must feel if their level comes back at greater than one! Because I was climbing the walls, restless and in so much pain, at that low level.  I just can't even imagine!
Rheumy was happy to hear  and I was happy to be able to report that I have gotten some relief after last week...pain on a scale of 1-10 at a 4 today , when just days ago it was at a 35!  (no joke, it was awful!) 

We have decided to higher the dose of one of the RA drugs I am on(sulfasalazine), keep the MTX where it is, and in the next 4 weeks we will be adding in a Biologic - all while slowly tapering off the steroid..which I can't wait to be off of!  She just wants to give me a couple more weeks to have the MTX build up and be closer to therapeutic.  Biologics come in two forms, either a self administered injection, similar to the MTX injection I am currently on, or an infusion via an IV, which would take place in the doctors office.   There is no "if' with this, this is happening.  I am very happy to continue to be aggressively treating this, and though I had some tough times last week - I do still have hope to get this disease into remission!  I'm too stubborn to give up just yet!  :)

be well,
mb

3 am ramblings....

It's 3 am, and I have broken the cardinal rule of sleeplessness- I have resorted to an electronic device! 

This is my 5th night of little to 

no sleep since last Saturday.  Being a person that has never slept good, at least in the last 20 years- you would think this is something I was used to.  It's not so when your body is fighting a war against itself.  I am in the midst of a "severe flare" in regards to my RA, or PsA, or to sum it up- inflammatory arthritis disease that is kicking the shit out of my body right now.  To help you better understand- imagine falling feet first, off a 3 story building- and shattering both of your ankles.  Imagine now, being expected to walk away from such an accident, no acceptable treatment, except the will to "get through it" .  Now imagine having injured your back in the same accident, and again- not much you can do, but get through it. You can however, increase this one little miracle drug- in my case, this is called medrol.  Medrol is responsible for my racing heart and extreme night sweats that are coupled with the pain I am having, which is keeping me awake tonight...er..this morning! (And last night,the night before., the night before that.....) 

Right this very moment, I feel like I am fighting a battle I can not win.  Right now, I am so angry that I feel like that!  Because I know that things take time- I know this!  But I have no patience.   I know for a fact, if I don't have three little smiling faces to get up and take care of every single day- this disease would be close to beating me!  And again, I am so angry for feeling like this- that I have to attribute this feeling of defeat to the exhaustion I am feeling after a long week! 

Spent a deal of time back and forth on the phone with my rheumys office today. (See rant earlier...I was ready to kill someone!)  I see her Tuesday, but as one of her NP's told me today, with the doubling of the steroid , I should hopefully be feeling "much better by then".. But for now I just have to "get through it"  can I tell you how much I wanted to reach through my phone, grab this woman by the neck, throw her down a flight of stairs, and tell her to "get through it"  I find even people in the medical field, who "get it"- really DON'T get it!  And honestly- responding "I'm sorry" doesn't do a damn thing for me either.  (I blame this small rant- yet again on the increase of steroid)

In about 16 hours, I will be giving myself my 4th MTX injection- rheumy says could take up to 8 more to be therapeutic- 8 more possible injections-8 weeks...I got this!  This is a miracle drug for a lot of people- praying it ends up being mine too!

I am off now to break the second rule of sleeplessness- and turn

 the TV on, with hopes of finding something I really have been looking forward to watching- so I can fall asleep and miss out on it!  😉

Until next time, be well!

Mb