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Saturday, January 7, 2012

The Good Doctor

New day.  Yesterday, through pain and frustration, I vented my way through a post.  After going to my appointment at the rheumatologist, I felt much better.  I was still in pain, but emotionally, I was better.  And that can make quite the difference.

So, the update. First, he apologized for the delay in the insurance approval.  The way he delivered the apology, I couldn't be mad.  It is a new relationship with a great start.  I like him a lot.  I also like the way he treats his staff.  As if they were his equals. with respect and friendly chatter.  He understands he needs them to do his job well.  To me, that says that he understands people. 

He explained that we had to flush the Humira out of my system before starting the new treatment.  He asked about where I was hurting and gently checked everything out.  He pointed out was fibromyalsia and what was ra.  He acknowledged my "puffy" and hot spots. He explained that everything was flaring because my body is under stress and attack.  To combat that, he is increasing steroid dosage until we can get the infusions started.  He offered the explanation that 50% of patients fail their first treatment.  And then assured me that there will be a time frame put on the next one for success and a plan if it fails.  He said and did all the right things and delivered it with compassion and kindness. 

The last things he did, meant a lot.  He came back out to me as I was at the receptionists desk making my next appointment and said, "I can't wait to see you in two months and meet the person you used to be.  I am really excited for you."  Wow. 

I am thankful for the friends who urged me to find a new doctor.  And that I finally realized I was worth it.  None of this is just in my head.

Friday, January 6, 2012

For those who get it...or care enough to!

I have just found out that the insurance company still hasn't approved the infusions as of yet.  After missing 2 doses of the injections I take for the ra, it has been all I can do to hold back and ignore (ha-ha) the pain.  I was so looking forward to today.  I still have an appointment with my rheumatologist that I plan to keep, but no infusion today.  No relief.  They say that possibly Monday or Tuesday they may hear something.  Some will read this and wonder what the big deal is.  Others will completely understand.

Back in the beginning of December, when I was told I was to take one last injection and then no more until the infusions start, it would be a rough month.  Especially with the holidays coming.  I have been barely holding it together.  Today I feel...just kinda broken and tired.  And despite what I wrote about earlier this morning, very much alone.

When someone breaks a bone or has an injury, it is understood that they are in great pain.  Over time the injury heals and the person usually goes on to live a pain free life.  But during time when the injury is fresh, complaining of discomfort is acceptable, expected. I am so frustrated right now because I am finding it harder and harder to fight back the tears from frustration and hurt.  The relentless hurt.  I want so badly to say how much pain I am in.  How tiny little joints ache and my eyes are heavy and hot because I have had a constant low-grade temp.  I feel sick.  But to look at me, you would never know.  There are three people who I can be brutally honest with about how I am feeling.  Even then, I am very guarded, worried that I may complain to much and turn them off.  I hold back, a lot.  I come here, mostly, to vent and to reach out.  Believe it or not, I do this because I want others in my position to read these words and know that what they are feeling and thinking is not unusual. 

I have not been taking calls.  I don't really feel like talking to anyone.  I don't have it in me to concentrate that long on what they are saying.  Sometimes, I just get annoyed and it's not their fault.  I know that the stuff they are saying is important to them, but in the stabs of pain I am fighting to conceal and not cry out from, it all seems trivial.  Pain is a funny thing.  It breaks you down.  I cannot concentrate, tolerate much or form a sentence.  It's been happening a lot lately that my kids are repeating back to me the crazy things coming out of my mouth.  For instance, "Let's sit on the fridge (couch) so we can work on your shoes (spelling words)"  WTH?  Clearly, my brain is overwhelmed.  I am overwhelmed.  With pain I cannot say too much about.  I don't want to be that person.  The problem is, this isn't a bone that will eventually heal.  This is constant and I just feel like I can't take another day.  I had an appointment yesterday where the doc was talking to me and said something about treatment over the next 20 years or more.  I felt my eyes open wide and wondered if he noticed.  Twenty years, or more? 

I know this isn't going away.  I've read about it.  Obviously, part of me was still in denial.  Chronic pain forever.  Misunderstanding, forever.  Silence.  Forever.

I suppose there are some that may read this and think it sounds quite dramatic.  Good.  Maybe it is time that we all start speaking up and out about what ra really feels like.  What fibromyalsia feels like.  In this moment, all I know is that some of the joints in my body hurt just as badly as that broken foot I had a couple years ago.  How about if we all just cast up all our sad joints for 6-8 weeks as a reminder to those who need it what this is like.

I know that eventually, I will bounce back to a better place.  A place where more than just my joints are comfortable.  My spirit will be at ease too, because I will no longer be walking through the forest blindfolded.  That is what this feels like.  Like most things in life, there is no instruction book for how to move through this.  I don't like the scattered feelings. The frustration.  I don't like who I am.  I need control.

So this post is pure vent.  Because I am sick of editing IRL, how I truly feel. 

A New Hope

It could happen tomorrow, technically today.  In a couple days it will be four weeks since my last injection.  They are calling this the "wash-out" period.  All I know is that I cannot wait for some relief.  I could be getting my first infusion today.  I've been told that I may feel immediate relief.  I cannot imagine.

Yesterday, I used a couple sprays of hairspray, the pump kind.  A couple.  My joints in my index finger felt as if I had jammed them into a wall.  Actually, it kinda reminded me of the times I caught a softball wrong and jammed my finger then.  I removed a couple of ornaments from our Christmas tree and my neck and shoulders are reminding me of those movements tonigh.  These things don't happen with healthy joints.

I am tired, exhausted.  Not as much as the week of Christmas and New Years, but more than I would like to be.  Thankfully, the weakness hasn't settled in and I am hoping that won't be the case before new treatment begins.  None of this stops me from doing all I have to do in a day.  There really isn't a choice.

These past few weeks have made it clear that the Humira injections I had been enduring over the past year, weren't doing all they could could.  I just didn't know enough to, know.  I wasn't sure how I was supposed to feel.  It was doing something, but not enough.  I am more in control this time.  I have a new rheumatologist with whom, I think, there is already a better rapport with.  My second visit, he brought in another rheum from the practise.  I was sold.  This is where I need to be.  And then they said the right words for me: "and if this doesn't work, we are going to try that.  If that doesn't then this..."  They have a freaking plan!  OMG!  A plan.  In the end, if nothing works, I know I will still be better with the plan.  Something to look forward to an be hopeful for.  Nobody likes to wander down a path unprepared.  As my baby boy would say, "Dis is my spot!".  Game on!

This is a new year with new opportunities.  I cannot wait to do the simple things in life that most of us take for granted.  Who knew tapping my foot to the music could cause so much pain?  Regardless, I am very thankful for the small steps forward.  A year ago, we were all ecstatic that I could dress to go to the grocery store.  Even if I only made it there for 10 minutes. That was progress.  Now I am able to drive myself, park, shop and load the car.  That is the difference a diagnosis makes.  So very thankful.

To my friends out there who are also searching for relief and trying to take this one day at a time...and not think about what lies ahead, I cannot stress enough how together we all are in this.  Never alone, even though many times, it feel as though we are.

Monday, January 2, 2012


Well, it's over.  The Christmas hussel and bussel has passed.  2011 is gone and we welcomed in 2012.  In between, my daughter turned 11(we still have to hold an official celebration for her).  I vowed not to let the craziness get to me this year.  I was going to choose wisely and take it easy.  Hmmmm...easier said than done.  I almost called the whole thing off.  That has never, ever happened before.  Silly mama.

Looking back, I am not sure what we could have done differently.  Certain things, like shopping were not an option until later in the month when funds were more available.  Baking, in retrospect, could have been tossed for this year seeing we didn't have an oven.  I decorated less, detailed less and was into the overall spirit less. There is simply too much to do.  Too much to remember, too much to over-think.  The decorations went up at a slower pace which only set me into more of a panic since it seemed they would be up for less time as I tend to lose patience with them shortly after the new year.  So much expectation packed in to too little time.  A sure recipe for disappointment.

What I have learned is that we need to simplify things more, purge more.  More, more, more.  To make for less, less, less.  We are not wealthy, in terms of ca$h money, but we have more than we could ever need.  It's time to share and sell.  I have always had a 2 year rule for clothing.  If it hasn't seen the light of day in 2 years, it is gone.  I love the feeling after I have cleared my closet and watch those bags being hauled out the door.  I helped hubby clean out his closet the other day.  At first (before I entered the project), he had this pile which consisted of a couple of shirts and a pair of pants.  I looked in his closet and asked him if he thought he was done.  He said, "Yes?"  Forty-five minutes and six garbage bags (for donation) later, we were done.  "How does it feel?", I ask.  He replies, "Really good.  I did have too much."  When we were going through his things, he kept trying to keep pants that were a size too big stating that he would need them when he was 60.  He was dead serious.  I reminded him that every Christmas and birthday, people come to me asking what he needs and he usually has no answer.  I suggest that maybe they would like to buy him some clothes and he could rotate the others out from now on. 

It is amazing how quickly stuff accumulates.  For us, it was when we first moved over 8 years ago.  People were very generous and our house was furnished on no time.  You kinda hoard for a while until you find your style.  And then you realize how much crap you really have.  If you have kids, multiply that times ten for each child you have.  Unbelievable!

I am a firm believer in memories, not stuff.  Don't get me wrong, I see the value in things.  I will always do my best to find the person who recognizes it's value as well when I no longer have a place or need for it. I am sentimental about many things, but if my house starts to get cluttered, I understand that I am no longer honoring those items as they were meant to be.  It's time to find a new home for them.  What good is anything packed in a box in the basement or attic?  If you love it that much, you'll find a place to display it.  If not, make a mental note and find someone who will love it more.  I get more satisfaction from sharing than hoarding.

My Gram's memory is slipping away, has been for some time.  Yes, I have her piano and a few other things she wanted me to have.  But, what really makes me smile?  When I think of her clicking her tongue, humming and dancing to polka music (she isn't even Polish.  In fact, she is very proud of her Scottish heritage).  Or how she could whip something up in the kitchen at a moments notice.  The sound of her laughter.  Or how she smells so good.  What item could ever maintain Gram's scent?  Nothing.  But when I close my eyes, it's all the sweet spot of my mind.  And with every beat of my heart.

I want memories, not stuff.  I want to make memories, not clean up stuff.  I want my kids to have good memories.  I can't make as many if I am so focused on all the stuff that needs to be cleaned up.  I am far too organized of a person to say that I will just let stuff go and not be bothered by it.  No, that won't work for me.  What will work is if there is less stuff to make a mess with.  If your plastic containers fall out of the cupboard when you open it, you have too many. Share the wealth.  Somewhere, out there, someone is wishing they had more.

So there we have it.  This years resolution (one of them) is to have less stuff.  I can't yell that the shop is a mess, if there is less in there to get messed up.  What I want is for my daughter (and sons) to see that their mama has talent in other areas they never knew.  I love to create things and paint.  I would love to work on little projects with them.  I want to let them explore their talents as well.  We only have one shot at this kid thing.  I want to make the most of the time I have with them like this.

In all honesty, this is a great gift to myself.  I need this to be the best I can be.  Somebody recently called me a perfectionist.  I really am not.  I am a hard worker.  Nothing/nobody is perfect, no matter how hard we work at it, someone will always find fault.  I have learned this the hard way, and will probably learn it a few times over again in my lifetime.  It's all good. 

Welcome, 2012!  Now, has anyone heard anything good about that Neat Desk Scanner thingy?  Lol.  More stuff!