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! ;)