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

Got a gripe!

I just want to say, if you answer the phones for someone, and you are the person responsible for taking a message - do your fucking Job!  If you work for a dr (my fucking dr!!!), a lawyer, anyone - you are the person who is representing that company at the time you answer that phone!   I am SO sick and tired of calling people, to find out that my messages are not delivered, or not reciprocated correctly!  Don't be the reason that I give up hope on this dr that I really do like so dearly!  And do not seem surprised when I say to you, "You are the person I spoke to, why haven't I been called back!"  Because what I really want to say is "seriously, do your fucking job - you suck, suck suck!!"   I am so surprised when I relay to my dr that I have called multiple times, to not receive a call back - and they are like "well that doesn't usually happen" - because their STAFF SUCKS - it has happened to me 3 times!!!  One time So again, if you are that person, you chose to do that job, you are representing a business - DO YOUR DAMN JOB RIGHT!!!

rant over!
mb

another day....

It seems the last couple weeks have probably been the busiest of my life (not really, but you know!)  The days have ran into one another, and here we are, at the end of the second week of September!  I find myself overwhelmed with a ton of emotions, that don't mix so well, and to put them into words doesn't come easy at times. 

12 days ago we dropped Jeremy off at Westfield State.  What a day that was.  Very emotional for most.  It's been quite an adjustment for all of us, but things seem to be settling in well, for Jeremy, and for us here at home who miss him a lot.  4 days after leaving him, Jeremy celebrated his 19th birthday, for the first time in his life, I didn't see him, hug him, kiss him and wish him a happy birthday in person.  Just typing that out, brings tears to my eyes.  Like I said, he seems to be settling in ok.  Hasn't been easy, but he is still there!  We will see him on the 21st when we head out to WSU for family day!

Yesterday being the anniversary of 9/11 -  a somber day around here, just like anywhere I guess.  My kids were instructed to come home and ask us parents, "Where were you that day, and how did you feel?'  I was at work, at a biotec company, sitting at my desk.  The EH&S guy came running into the office, where I sat at my little cubicle, and said "A plane just flew into the World Trade Center!" me, not even putting two and two together, thought "the world trade center, how is that possible, it's only like two levels high!"..being a local, you will know I was thinking the WTC Boston.  The company I worked at, the home offices were located at Rockefeller Center, which you know is just a few blocks away from where everything was happening.  Our email, phones, all systems, were down pretty immediately.  We went over to the main building, to the break room, just in time to watch the second plane fly into the other tower.  I had never felt so helpless in my life.  To describe the emotions I was feeling, I don't think I can put them into words.  To bring you back a couple of days, I had spent the day just a few days earlier, at the dr's office, trying to confirm what was later to be my pregnancy with Samuel. After many ultra sounds, my dr was thinking my pregnancy was not viable, and I was to go back on the 11th,for a repeat ultrasound, and then to schedule a D&C.  I didn't go to the dr's that day - but a couple days later, to find a strong heartbeat, and a viable pregnancy - something that gave me some hope and a reason to smile amidst the terror going on in the world.  I stayed at work as long as I could that day, then rushed to pick Jeremy up at school. I remember sitting on my sofa the evening of 9/11, watching the news with Steve, an old friend, and Jeremy.  When Jeremy finally begged us to "make it stop!", when they kept playing the footage over and over, I remember silently thinking to myself, "why am I even thinking of bringing another baby into this world, what am I doing!"..  Much like the rest of the world, I spent the next couple days glued to the tv, crying, terrified out of my mind.  I told my kids yesterday, a summary of what I just told you, and told them that I couldn't describe exactly how I felt that day, but I knew I never wanted to feel that way again, ever.

We are all back in the swing of "back to school" schedules and routines.  It's been an easy adjustment for us this year, thankfully! 

On the health front, I am feeling very frustrated.  I have to look back at dates, but I am pretty sure I am about 7 weeks into MTX - and I still feel shitty.  I am also discouraged because again, a phone call to my new dr has gone unanswered.  Is it that hard to call a person back?  In a moment of self doubt, I actually started to feel like an idiot for calling, wondering if maybe my complaints are just silly.  I know they aren't, but was just giving my doctor an invalid reason for not calling me back.  I have been pushing myself a lot lately.  Not really taking some days to rest.  I feel it at the end of a day, when I find myself in bed by 8pm because I just can't stay on my feet any more.  These are the days that I spend some time getting very angry.  Angry and sad.  Wondering if this is how I am going to be, for the rest of my life.  A tired, sore, bitter at times, half rate version of myself.  I am sick of just not feeling good.  Sick of feeling like a 95 year old woman.  Sick. Of. It.

Just over two weeks until the Komen Race. To date, me, my sisters, and my kids have raised about $2,500 dollars!   Thank you again for everyone's support, donations, and outright kindness!  It's clear I will be *walking* this race, and not running like I had hoped.  I would crawl on my hands and knees if I have to.  The local newspaper is covering the race, and they contacted me this week, and asked if they could talk to me about why I am doing the race this year.  I have an interview today over the phone - kinda neat if you ask me! :)

I had much more on my mind today, but I have to be off to rouse the troops and get them moving....

Be well,
mb