It is not easy being limited by and having to live with and in pain. However, if you allow it to take away the joy in your life, then the intensity of the pain will increase tenfold

Lost my way

I realized after reading a friends blog, that it had been a long time since I had posted in mine, heck, I wondered if I even remembered my password to get in!  So after reading through all my posts, I hesitate as to where to start today.  So much has changed.

Firstly, Simponi, my biologic drug of choice, didn't work as well as I had hoped, and the side effects sucked. I guess only taking it once a month wasn't enough, and there wasn't much change of me doing a double dose. For one thing, that cost is astronomical, around $ 3700/month, and why create more side effects if I'm not happy, when there are so many more drugs to take :(

So now I am taking Cimzia, another 'new' biologic, with crazy side effects, and costly as well. Who knew that meds could cost $1000+ a month, and for god's sake, why! I get the whole research, blah, blah, blah....let's just say I am thankful for being in Canada, for having great insurance, and for now taking a reasonably 'new' medication, so new that the company still covers some of the cost for its patients.  It was scary a bit at first, I took 6 months worth of medication in the first 4 weeks. I had to double dose every 2 weeks, thought behind this was it would load my body up with the medication, leaving less chance of rejection. Apparently if the medication works, it works, if it doesn't work, you know it within the first 3 months or so....Oh goody, another test drive!

 It's been 10 months now, and it works as good as any of the other ones I've taken, no better. By around the 11th day, I know I need my needle, and by day 14, I'm standing on Laurie's doorstep waiting for her to make time to be able to give me my needle. Yah, yah, I can hear you all giving me flack. I know, I can't do it, I can NOT give myself a needle.   I  Just  Can't.  Anyway, besides the small side effect of wanting to scratch my eyes out, everything seems to be ok. I'll continue on this path for a bit, and see what the Dr. says at the end of the month.

How come I sit here staring at a blank screen, when there is so much in my head that I want to get out, things I want to say, but they just don't come easily.  I should start by saying things have been good lately, really good.  Seems like the new Simponi is working by taking away the swelling and the pain, and those USANA vitamins I tell you, they are the answer too!  I feel so much better these days that I was talked into signing up for a Duathlon on Sept.8th in Wasaga Beach! I think I was all caught up in the excitement because its something I wanted to do for years, even went so far as to register 3 years ago for one,but I didn't make it.  One, because of training, but mostly because it coincided with our race weekend in Mosport, and it just wasn't going to happen.  But I did train for it...mostly :) So this time Jacquie and I signed up for it, and I woke up the next morning and I was all like, 'holy shit! this is for real, we signed up together and PAID for it, now I'm responsible for another person, not just me!'  SO I better get training...and the running, biking, sore butt, knees, feet begins.....but I have a goal, a reason to get out there now, a true inspiration to put my shoes on, both running and riding shoes.

 It all begins with the water bottle, loading up the Camelbak, preparing the snacks for on the go, the water, the electrolyte tabs, the Gatorade for afterwards, the Garmin( holy crap, did I remember to charge it), Park pass, the music(is the battery charged, did I load fresh music, God please don't let me have to listen to the same crap again! nope, forgot.), the right socks, right shoes, and right clothes...check.

 Performance anxiety for every time I step out that door, ABSOLUTELY...sigh, why am I so hard on myself, why can't I just go, be free and enjoy?

12 weeks of this, will I survive?  Oh Race Day, you wont come soon enough, and then all  of a sudden you'll be here, and I will be ready...because it's the journey that counts, it's where you learn about yourself.  It's where you see if you have 'inner fortitued' as Dad called it.  I have it...somewhere, packed away....guess I better get it ready for tomorrow, pack it up with my Camlebak, and all my other goodies...I'm going to need it.

A Beautiful Spring Day not Wasted

Would you believe me if I told you that I mowed the lawn today? D actually bought me a new lawn mower and I was out there mowing the ditch and doing the trim today....not as good as I could've, as I was told, because I forgot some spots, but I claimed to have 'sore' hands so I was done as much as I could do ;)  A wee fib, but the vibrations from the mower really make my hands feel like there's bugs crawling through them, and then after a few minutes, they hurt.  And then there's the pulling and pushing of the mower, up the hills, thro the thick grass, around the trees, back and forth, push, pull...sigh, who can blame me for quitting early!  Anywho, it's done for another week, I just wont let it get so long before I cut it next week....I hope.

And then I puttered, wandered in the field behind the house, looking for small trees that may like to be transplanted into a loving backyard like ours..and to what do my wandering eyes do appear...Asparagus! Yippe! I thought it had all burnt in the frost from the early spring, fooled you, Mother Nature says.

Defined by your actions?

Rheumatoid Arthritis, whether we like it or not, does define you. I say this not to take the wind out of hopeful sails. But simply to breathe some realistic air into the mix.
RA defines all of us who suffer from it... it even defines much of the lives of those closest to us. My husband is absolutely finely tuned, and dialed in to the inner workings of his wife's disease. He's even more aware of day to day happenings than I am at times. I have to give him credit, sometimes I don't think he's paying attention, and then Bam!, he drops some comment about my behavior, or actions, and I'm like, "Dude, you are paying attention"  And then what do I go and do? Try and hide the worst part of it, or the small things he might notice again...secrets, they are the worst, but in a way, you become ashamed of what has happened to you, is happening to you, is preventing you from doing, or is making you become.  I know, I have NO control over why it happened, or continues to happen in a creeping forward motion, and I cant explain how I feel...but there it is.  Unless you have walked or tried to run a few miles in my shoes..you just can't get it. Period.


To deny that we are not defined by this disease perpetuates the mystery of this disease. It makes us continue to act tougher than we need to be. A characteristic of many people, myself included, who suffer from any chronic pain affliction is we are overachievers, multi-multi-taskers, givers galore...and we are stubborn go getter's who not only can do and do and more, but don't have time to get sick.
BUT we did. So why put on that face, that mask, that hides this "invisible disease" as they call it-by saying we are NOT defined by it?

Good question.  Got any idea?

Life, fibro and RA have gotten in my way, but the one thing I realized as I went for a run yesterday was how much I truly missed it! The freedom, the smells, the sights, the just being one with your body, no matter how hard the fight is...and it's hard. I say that because this morning nothing in my body works right :(  When I rolled, and mean literally, ROLLED out of bed, I thought someone had taken a bat to my knees and my right hip :(  It's a good thing that there isnt a reality TV show about my life, the short walk from the bedroom to the bathroom in the mornings would make most people spit out their coffee laughing :)

Damn run, damn down hills!

But I was so thankful to be able to go yesterday, I thought about it all morning, like it was  my secret that I was keeping...hoping that the day stayed bright and sunny, and that I wouldn't lose my nerve to the ever present 'performance anxiety' beast, and give up and not go.  Kinda hard to give up, when all around my is reminders to "Never, Never, Never Give Up'....plus I knew we were having potato salad for supper AND lemontarts, soooo kinda had to go!  One thing about not running, or being active, you gain weight, in all kinds of places that arent fair, and that make wearing the same clothes a wee bit uncomfortable at times :)

So, I'm 2 weeks into my needle, and haven't felt good really this whole time. I had really hoped that the new drug, Simponi, would be better than the Humira.  Granted I have to take it less often, so it must be doing something since I have gone from every 2 weeks to once a month.  Maybe, as Carla said ( my friendly needle giver) I feel like crap this month because I waited too long, was in other words, 4 days late from the date I was supposed to take it. Hmm...maybe, so much to learn about this new drug.  I guess it's working, but the side affects are not my favorite, either major or minor.  Major is scary, but the minor ones are just plain a pain in my ass, or mostly, my throat, my chest, and damn if I can't stop the dizziness. And no, the dizziness is NOT from the beer :) Although I did wondered about that the other evening :)

I think the other saving grace for me this last 3 months has been a change in my vitamins and mineral intake.  If you're at all like me, you have a cupboard full of vitamins, minerals, hair products, make up and lotions that you hoped, with all your fingers crossed, would help you. Would give you that magical feeling of being all better, or giving you that ever elusive boost of energy, calm your crazy, frizzy hair, moisturize your dry skin, and someone please make me feel better, and clearer in the head, lift that fog from my brain!  For me, USANA has done that, and more!  And it has worked not just for me, but I also put Diezel to the test.  He's my guinea pig, I used him as my *real* test because he's normal...well as normal as most :)  I knew that if I made him follow the same structure as me, then I would know if this stuff works, because he's not subject to the dramatic highs and lows that I am, so he would be a better test.  At first he did say he noticed 'something', and then it kinda just blended into a normal life.  But he went to California for 2 weeks, forgot his vitamins, and thinks he noticed a difference.  So 2 days after he got home, and had resumed taking his USANA Health Pak, he flat out told me, "They work, I wasn't sure before, but now that I've gone without, and started back again, I know the difference.  It doesn't make me 30 again", he says " But I certainly don't feel my age, it gives me a certain 'vitality', like I can do more."  Ah ha....that's exactly how I feel too! And on those bad days, I don't feel so empty, or foggy.  I mean I'm still tired, but I know that the USANA products are helping me to take care of myself now, and for the future.  As we all know, vitamins are like insurance, it's something that we all need, that we all pay for, and sometimes can't see the benefits from it.  Trust me, taking care of yourself from the inside out is the greatest thing you can do for yourself! Our health is something we can control, to a certain extent, by taking all the right precautions, and treating ourselves right.  Unfortunately we are killing ourselves with our knives and forks every day....so maybe we should all think about taking a better product, something proven for potency, and production, and really thinking about what is going into our bodies....that's just my opinion :)