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

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 😜

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

Everyone has their own reasons to keep trudging forward...

Here are some of mine......

MTX, shoot me up baby!

All joking side, I have started to become a teeny bit anxious about my upcoming MTX injection.

I spent an hour or so late last night/early this morning, as I was restless and sleepless, reading up on many people's experiences of self administering their doses of MTX , and they took the time to share their story, answer questions, etc.  I have picked up my prescriptions of needles and meds, and have to say, I am very intimidated by the needles.  I am not a needle phobic person, but for some reason, looking at them - freaks me out some!  I believe they appear to be these large needles, but after all my reading, everyone has said how they are small, and really not that bad.  It's a mental thing, I am sure.  I just keep reminding myself that I will feel better!
 
I spoke to the new NP  this morning and got the results of my MRI I had last week, it "proved existence of Rheumatoid Disease, or Inflammatory Arthritis" ... as if I had any doubt!  When I hung up the phone, I felt a sense of relief at the news.  For some reason I keep looking for justification of all this pain I am in.  It leads me back to the first dr I saw, who was making me feel like I was crazy for all the symptoms.  The dr who told me "your ankle pain is not related to RA, it's from old basketball injuries" - and brings me right back to the day when I left his office, feeling hopeless and defeated, which was later followed up by determination and stubbornness!  I refused to accept that that was it for me, a life of pain, and "resting" to make myself feel better.  I don't have time to rest!  I am so glad I sought out another dr, and refused to settle into the life the first told me I "had' to live.

I have become a fan of another blog, which is written by a women who also has RA.  She is beyond educated in the disease, and I could never compare to her in regards to her knowledge, etc.  What I can compare to is, when she writes about how she feels, when she gets personal, I feel like I am reading my own words.  I could be the person "saying" everything she is saying. I thought I would share a recent article that she wrote, where I feel like after my experiences lately, I could have written it word for word.

http://rawarrior.com/what-would-the-car-mechanic-say-if-you-didnt-look-sick/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+RheumatoidArthritisWarrior+%28Rheumatoid+Arthritis+Warrior%29


So, as I mentioned - tomorrow is the big day.  My first MTX injection.  The first day of the rest of my life, Wish me luck!

Be well,
MB

dealt a bad hand...no problem!

Restless sleep last night. Probably the worst since my inflammatory arthritis diagnosis.  I tossed and turned, uncomfortable with back and ankle pain.   It was one of those nights where every little bit as I lay awake, my mind became my worst enemy!  As I sit here at 5:04 am, "enjoying" my first cup of coffee because I couldn't lay there anymore, I figured I would run down my stretch of bad luck, and ask what the hell we did to deserve this?  To start, I am not asking to host a pity party, I am merely just caught up in the thoughts of so many things that have happened in the this past  year of 2013, and honestly having a "why  me??" moment!  I started off my year, (and this blog really!) with a health scare of my own, being a tumor in my breast, that was later found to be benign.  I received my diagnosis of RA at some time in March/April, so say in the Spring.   Fast forward to Summer, my mother receives a breast cancer diagnosis on the very day that I have my 6 month follow up to find out my tumor has not grown, therefore does not have to be removed.  My son goes away in a sudden rush to football camp, with the promise of a starting position, only to be sent home 12 hours later, in a emotional set back, because someone else showed up and preformed better on day one, and on that very day, my poor mother in law falls in my back yard during my girls 10th birthday party, and she breaks her arm and hip!  The very next day, Isabella crashes in a go cart, and she has what we are still hoping to be a minor neck injury, as we follow up with a spine specialist at Children's Hospital today.  Ok people, when can I say, enough is enough???   When does someone, God, or who ever is in charge of making things happen, realize that my family has gone through enough???   My immediate family, as well as my extended family who has had a rash of their own medical problems as of late, has had enough!  I think we deserve a "bye" in the next round.  I think we are all such good people, that we really do not deserve to be dealt such a bad hand... Really, when is this all going to stop?  I am emotionally, physically and any other form that I can be, exhausted!  I am really not sure one family can take any more...2013, you can hurry up and end, because we are ready to start fresh and new...bring on 2014!

In RA news...I paid an unexpected visit to my dr's office yesterday.  This past weekend was very hard.  I woke up Saturday, barely able to stand.  My ankle pain, which is setting off my back pain, has been at an all time high.  After seeing a wonderful NP, who I may even like more than my dr,  she has come to the conclusion that it is already time to make the change from oral MTX , which my body is not absorbing, to injections, which my body will fully absorb.  I am having an MRI on Thursday of my ankles and feet, then I follow up with her on Tuesday, as well as have an "injection" lesson and receive my first MTX injection then too.  It is being decided, based on the results of the MRI - as to whether I will be adding in a biologic injection in addition to the MTX,   I am done feeling like shit, and feeling like I can't do things.  I am ready to take on the next step in this battle, and change the way I am feeling. 

Before I go, I want to take a minute and tell everyone how completely overwhelmed I am with the support and donations I have received toward my Race for a Cure.  From my mom, my sisters and I, I can not say thank you enough!!  We all understand that this disease effects just more than us, and we know with our efforts, and the efforts of those who are around us, supporting us either mentally, or via a monetary donation, that some day we really will make this a Breast Cancer Free world!  So again, thank you! <3 p="">

The sky is getting light, and my coffee is getting cold, until next time, be well!
mb
xo

emotional day hangover!

That's what I feel like I have.  A hangover!  I still can't believe that my little teeny babies turned 10 years old yesterday!  I keep saying , "where has the time gone?"  I feel like I have blinked my eyes and I went from having these tiny 4.5 lb precious mini's - to these young women, who have somehow formed their own opinions on everything in the world! 

I spent a few minutes this morning, looking through Sam's 5th grade yearbook.  I finally just wrote him a message in it, because I couldn't seem to wrap my head around all I wanted to say to him at the end of the school year.  My heart is so full when it comes to Sam, he is a special boy, that a lot of people don't understand.  Except for me, I fully "get" him, so you can imagine the tears that flowed when I finally finished what I had to say to him.  Now I will just leave it, and let him come across it in his own time.  :)

This picture above makes me smile like a cheese head.  How much they  have changed and grown, and still, how beautiful I think they are.  Not just in looks, but in the people that they are becoming.  I am not sure everyone will understand when I say this, but I am sure that most parents will - but sometimes I almost feel heartbroken with pride, at what good kids I have. I feel guilty for being so lucky!  And I wonder sometimes if this feeling will ever go away?  I really hope not!   When I think about it, I hope that when my own mom looks at myself, my sisters and brother, I only hope she can feel a fraction of the pride about us, that I feel about my own kids!

So, my reason for being all sloppy with emotion today is because yesterday threw a curve ball at me.  We found out that Jeremy will be playing football after all at Westfield, and he is to report to training came 9am, SATURDAY morning!!!  THIS SATURDAY MORNING!  I was not quite ready for this because we had never heard anything back after he sent in his "highlight reel".  He went yesterday, hoping to find out if he could be a "walk on" - and the next thing he knew he was being shuffled around by the athletic director and football coach, with a guaranteed position of punter, and information about how he was to report to camp on Saturday for the next few weeks! um, WHAT?   I thought we had more time!   I am not ready!  I do not have everything ready for him to move into dorm life, and emotionally , well forget it..I can't delve into how I am emotionally about all this, no one has time for that.  I summed it up though: I am not ready!  There have been so many emotions over the past couple weeks, most of them being in the sad form, so I am just ready for emotions of the good kind!  This is an amazing opportunity for Jeremy, and again, I could not be more proud!

Now for some RA crap - I am not sure I mentioned speaking to my dr the other day.  My MTX dose and my prednisone dose have both been upped.  All of my bloodwork came back free and clear.  My liver is functioning fine, vitamin D is good, white cells, etc.  Physically, I am doing so bad.  I have not felt "good" in a couple weeks.  From med side effects, to RA symptoms, this disease is kicking my ass.  I have had some private breakdowns, where I dread getting out of bed in the morning, because putting my feet on the floor hurts - standing weight on my ankles, unbearable!  Brushing my hair, and the girls hair, is a task in of itself.  My wrists and thumbs are sometimes just not functional.  They hurt like as if they are broken, and at times I can just hold them to my body ,because sometimes that is all that feels good.   I am ready to feel good again.  I am sick and tired of feeling like this, so it is time for these damn medications to start doing their job and working!  I AM ready for this!

I am off to enjoy my coffee in the quiet of this morning before the troops awaken!  It seems a beautiful day is upon a is, I hope you get to enjoy it! 

Be well,

Mb

10 years ago..

......at just about this very moment, I called my mother.  I was 33weeks 6 days pregnant with identical girl twins.  I told her " I just feel funny, I don't think this is it, I just think something is up"..all this after being home for about a week, after being in between Winchester Hospital, and Beth Israel Hospital, on bed rest from the time I was 19 weeks pregnant.  I spent roughly 17 weeks, in bed..fighting for these two little miracles to make it into the world.  I just "knew" it was nothing...I called my sister Shannon, who came to sit with my boys while I went to the hospital to get checked out.  I even told her "I'm just getting checked, I will be back in a couple hours!"...Little did I know, I was just about 10 centimeters and these girls were far more than ready to make their arrival.  That night my life changed forever!!!  Isabella Anne was born at 12:56 AM, and Grace Marie was born at 1:01 am, on August 14th, 2003.

 

I was sitting around tonight, not feeling my best, looking at old pictures, and of course saying how much I can not believe the last 10 years have flown by!! 

Today was a tough day, filled with a lot of pain...but also with lots to do, so I can't let RA stop me.  I had my first round of post MTX bloodwork done, and all of my levels were perfect.  I put a phone call into my doctor, and she has decided to increase a couple of my medications.  I am really hoping in the next couple weeks to get things under control, because I have some "training" to do!  My sisters and I are all registered to participate in this years Susan G. Komen, Race for the Cure in September.  I know it's probably not a feasible goal for me, but it's just that - a goal.  I know I can sit and hold my mothers hand, and be there for her as we all go through this together.  But I have set a goal to get out there and DO SOMETHING!   I'm going to run the 5 k, and I am going to raise some money, and together, me and my sisters are going to make a difference. 


Please feel free to visit my personal page, and make a donation!  I greatly appreciate any, and all support! :)
http://www.komenmassrace.org/2013/iammaribeth

Off to finish planning a double 10th birthday celebration!

Be Well,
MB

Hours earlier...

Had a wonderful day with my mom, her friend, my mother in law and sister in law- as well as my maniac kids! 

 All my company  is just about to leave, planning an earlier night ,so I Took my MTX hours earlier with hopes that tomorrow won't be as bad as last Sunday!  Fingers and toes crossed!

Saturday..

My Saturday's are usually filled with the craziness of having 4 kids, a home, yard, etc. It almost always involves running from one field to another, to mowing ht elawn, working in the garden, cleaning the pool..laundry, cleaning..all that fun stuff!  As of late, it is also my MTX day.   While I was just whipping up a gourmet (yes, I cook gourmet! (: ), omelet for myself and Steve to share, I suddenly realized that it was an MTX day.  My heart got a little heavy, because I know that the next two days are so are going to be awful!  As awful as I think they are going to be, I know it could be worse.  I am not going to talk too much in detail of the struggles my family has been faced with very recently, but I will share this; About a week ago we were all shocked with a breast cancer diagnosis that my mother received.  It has taken some time for us all to process this.  I will not share in detail all that is going on, as my mother is a very private woman, but I will say that we, as a family, (me, my family, my sisters and brother, and their familites) are in this together. We are all moving forward, and preparing to fight the fight of a lifetime, with my mother, for my mother and we know this cancer does not stand a chance!

SO, MTX day or not. I am going to tackle the things that I need to get done, and I am going to smile about it.  I am going to have a BBQ with some family, and I'm going to laugh and cherish the time.  Tomorrow may be a bad day, and the coming weeks there may be some struggles, but all we have is today, so live it up, love those around you, and as always, be well!

-MB
xoxo

And so it begins....

Thank you MTX! 😖