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Wednesday, December 5, 2012

266.4 Part 2

Wow.  266.4. Not only was that the title of my second blog post, but it was also my weight.  At the time.  Within a year, that number would rise to 278.  Thanks, in part, to steroids.  Talk about feeling like you are fighting a hopeless battle.  Actually, I recall just throwing my arms up, going to the store and buying the biggest pair of jeans I have ever bought in my life.  There could be a mental block here, but I think they were a 22W or a 24W.  Have I ever expressed my dislike for the "W" that follows these "WOMAN'S PLUS SIZE" sizes?  You know, like we really need to see a big fat "W" after the double digits.  I know, WIDE.  Perfect. Let me just tell you, the first time I can fit into anything under a size 16, I a going to leave on EVERY label; even the long sticker they put on one leg.  And then I will leave the house and parade my Non-W ass around town.  Yup.  In the words of my children, I sure as heck will!  In fact, I may swipe a couple stickers from other same-sized jeans so I can slap them all over.  One for each thigh, front AND back!  You betcha!

For a long time, I danced between 275 and 278.  Hoping with everything that I would NEVER see 280.  Exercise was out of the question.  First of all, I couldn't move.  Stiff achy joints combined with 278 make things difficult.  And honestly, I was, well, caught up in a catch 22 for a bit.  At that time, all I had control over was what I put in my mouth.  I knew and know that I am supposed to eat small, frequent snacks/meals (6 times per day).  First of all, I barely ate 2x per day.  I can hear the gasps of disbelief.  But it is true. Fat doesn't always mean over-eater.  I am also supposed to steer clear of carbs (I have PCOS).  And like every mother, I was busy.  And completely overwhelmed and fighting transitions we were encountering as I struggled, along with several doctors to figure out what on earth was happening to me.

The dust is starting to settle and I am beginning to find some sort of normal.  I am starting to settle to, I guess.  Not a depressing settle.  Maybe that is the wrong expression.  Especially for me.  I have never settled.  Could the right word, possibly, be...accept?  Adapt?  I don't know.  But life is different now and we are all rolling with it as best as we can.  What has settled over me/our home is a sense of calm. We are more in control of our time than ever before. And I find that we are terribly protective of it. It's kind of nice.

The meds I hate to take so much, have helped in more ways than one.  I have to eat with them, or I have a VERY angry belly.  So, I do.  I am half way to my 6x per day.  I saw a nutritionist and we made a plan.  In October.  It is now December.  It is a great plan.  However, I have yet to implement that great plan.  Considering what November was like for us in this house, I won't beat myself up over it.

But guess what?  That eating, just 3 times each day...did something.  Because, the other day, at the doctor;s office...I weighed in at 250!  How come there are no CAPS for 250?  Steroids and all.  I weigh less than that original 266.4 that inspired this blog.

I cannot wait to go to the docs one day, soon, step on that scale again and have them NOT have to move that weight block thingy past 200.  They are always kind and start it out at 150...and I always laugh and thank them for the vote of confidence, even though I am sure it is part of their training to do so ;0)

For one week, I am going to once again attempt to make a small change.  I am going to increase my water intake.  I know...I've said it before.  But it's one week.  I CAN DO THIS!  I just proved to myself that small changes can make for a BIG difference.  266.4.  250 :0)

Tuesday, December 4, 2012

Back to Basics

So I did it.  I made a decision to make life a bit simpler this Christmas.  I don't know what happened, but last night, I was sitting on the couch, not feeling quite up to snuff and had this wave of overwhelmed crash in to me.  Not over.  In. I looked around at the Christmas decorations and felt..nothing.  Not warm, not inspired...not in the mood at all.  Again.  As a former Miss Christmas...this was not a good sign.

Perhaps it wasn't the best time to make decisions like this, but this morning, I feel pretty good about it.

Bottom line, no matter how much I try to fake it, I still am not 100%.  I am fine to do a realistic amount of activity plus normal day to day stuff, but add on extras and the telltale signs that I am pushing start to appear.  Honestly, I am not looking for 100% and am fully aware that, for me, that may never happen again.  In terms of Old Rachel. New Rachel (NR) has an adjusted 100% (which, my husband tells me, can still kick a "healthy" person's ass!).  In fact, NR has yet to reach 100%.  I was close, but got knocked back a bit.  Even as I sit here today, I am far better off than I was just 8 months ago.  I am learning the limits.  The hardest part is knowing that there are some who don't understand, or I feel, judge me on those limits.

My Gram is 83 and healthy.  Physically. Not even a cane.  However, she has dementia.  Badly.  My mom recently asked me if I would rather grow old and be confined to a wheelchair or be, for the most part, blissfully (we assume) unaware, but have a healthy body.


It is terribly painful for me to sit with my Gram, my rock, my first experience with unconditional love, and watch her slowly slip away from us.  I often sit and watch her to see how and if she is engaging and wonder what is really going through her mind.  I know that she is aware, at times that she is, as she puts it, "pazzo"  (Italian, for "crazy").  I don't think she is.  But she certainly feels it.  How could she not.  I can only imagine the confusion from moment to moment.  All I can hope for is that wherever her mind takes her, it is a happy time and place for her.  Sometimes, I wish she could stay in whatever world that is, because it is hard to see the reality wash over her face each time she returns to today's moment.  And she says, "Oh Rach!  I am pazzo!"  And I tell her, "You sure are.  But I promise not to tell anyone.  Because they already know."  And then she laughs.  I love the sound of her laugh.

But, is that pain really only pain to those of us watching the Gram, Mom, Pauline we all knew slip away?  I know that every holiday meal, I think of her.  And how she would buzz around and seem to have it all put together...without a drop of sweat or an ounce of frustration or panic.  Every project I do, I think of her and who she used to be.  Yes, we would all love for Gram to be with us the way we each individually remember her.  But what would she want?  Is she even aware?  Is she happy?  Or is she plagued with many moments of being lost?  Does she remember those moments long?  I would hug every single moment like that away.  If only.

So. The wheelchair option. That one is not too hard for me to imagine.  For one, I have been there before.  It's not easy.  Before RA, I worried about being a burden on my husband in our later years.  I had three knee surgeries and was told I was looking at a replacement by the time I was 40.  Meaning that when I was really old, I would really struggle to get around.  The thought of someones life being altered and burdened because of me is a solid fear I have.  I want to make other's lives easy.  I want to help where I can.  I don't want to be a burden.  I hate that there are things I can't do on my own.  And believe me, I am a fairly determined person.  I could always get it done.  And as much as on my own as I could.  Now, the steps required to vacuum a room are frustrating to me.  Fixing things are more difficult because I have to have someone there to run and get the materials and tools needed to do the job.  I HATE that.  And though I am thankful for each day that I am allowed to open my eyes and live that day, there is no telling how I will be able to move through that day. These days, I have adjusted to this, unknown.  In the past, notsomuch!

There is a lot of pride to be swallowed when you have any kind of illness, disease, etc.  I know that I am not alone in this. For some, it may be easier than others.  Not for me.  The other day , I saw something that someone had posted.  It went something like, "Telling me that I shouldn't be [unhappy, sad, etc] because someone else has it worse is like telling someone they shouldn't be happy because someone else is happier."  Wow.  My daily mantra for years has been that someone, somewhere has it worse.  Be thankful.  And I truly believe that.  What I understood when I read that was that I haven't been completely fair to myself.  Although I don't condone wallowing in self-pity, I think it is unfair to expect anyone to just brush over something that has been life altering in so many ways like it never happened.  I have been doing this to myself for years now.  I hide when I am feeling bad.  I don't always tell when I have been to the ER. When breathing becomes more of a struggle, I struggle with myself and wonder at what point do I call?  Then I worry that I may be bothering someone if I do.(The whole time not seeing that there is a reason and history that proves I truly am not bothering anyone) I move through the motions, even when they are agonizing. Sometimes pushing too hard and paying for it later. I sometimes cry at night, because I am so disgusted with what has happened.  And then I get mad at myself for crying.  I get mad at myself a lot.

 Frustration is a word that is probably overused by me.  But I don't know a better one.  There is frustration in so many areas.  With how I feel. What I want to do and can't.  What I want to say.  But can't.  Or won't.  With what others say.  Or don't. With writing.  Or typing.  With the lack of understanding.  And lack of ability to educate.  Ignorance. Expectations.   Frustration with trying to keep up.  With myself and my head.  Pesky head.

Overwhelmed is another overused.  I am constantly overwhelmed.  In both good and bad ways.  I am often overwhelmed with frustrations (see above).  And then I am overwhelmed with compassion, love and understanding.  Most often from those who have always been there to give it and some who just
show up out of nowhere, offering so much of it.  Crazy enough, I squirm with discomfort when I am offered such gifts.  I struggle to think that I am at all deserving.

I hate the "would you rather" questions.  Truth is, I don't know.  I can only imagine that Gram would love to be with us the way we wish she were.  And if it meant being in a wheelchair, she may say, "Sign me up, Ra Ra!".  Who knows?  I sure as heck don't.  What I do know is that everything happens for a reason.  There is a reason, after nor really being on facebook for some time, I logged on that day to see that quote.  This is hard, for me.  I have had countless professionals say things to me lately.  Small comments, that I brushed off.  Things like, "[RA] is a tough disease".  She was the cardiologist's nurse who put it together after taking down the list of drugs I was on.  It wasn't just what she said, it was how she said it and the way she paused what she was doing to make eye contact with me.  I could look anywhere but at her.  Because I would cry.  I wanted to cry and admit to her, and myself that it was.  But I didn't.  I have heard that I am way too hard on myself and that it is OK to accept or ask for help. Even in the rheumatologist's office.  I JUST learned that when they are squeezing my joints, I am supposed to be telling her that it hurts.  In the freaking rheumatologists office!! Last visit she realized because I couldn't talk through the pain.  I lost all concentration.  Usually, I brace myself and hold my breath and tell her "it's tender".  I don't have to be tough there, but I still try.  Because, even there, I feel like I am weak if I admit to pain.  Even though she can feel it and see it.  She wants me to tell her and I can't.

Another truth.  I am angry. And terribly disappointed.  I have been let down.  Despite everything that has or has not been going on in my little corner of the world, I have been where I needed to be. To the best of my ability and sometimes beyond that.  What I am angry about is the possibility that because I can no longer offer to the extent I used to, I am not as valuable to some.  Or the idea that I may be thought of as weak and not handling this whole chapter in my life well.  And I know the answer to that is then they should be of no concern to me then.  I know this, but it still hurts.  Because I never want to believe the worst.  In anyone.  I may have to.  Just another test in strength, from life, I am sure.  A test I will pass with flying colors. Already have.  Because I have always remained true to who I am.  And will always try my very best to keep on doing so.

So.  Would I trade all this to be blissfully unaware?  Again.  I cannot say.  I want to know my family.  I want to be with my family.  If that means, someday, possibly from a wheelchair.  Well.  So be it.  If it means that I will be there, but...maybe just not as all my loved ones wish me to be that too.  For now, I have the blessings to be there where I am truly needed.  In both ways.  With my family.  Creating memories so grand it will never matter whether it is my mind or body that fail me.  Gram dances to polkas around the room and whips up the best meals,  in my mind...and will forever.  Just as my Granddad (who has been passed for years) came home the other day and told Gram he wanted to go to the museum.  In her mind.

No cards. No cookies.  No parties.  No pressure.  Back to the basics.  Back to what Christmas is all about.  Presents!  No.  Just kidding.  :0)

Monday, November 26, 2012

For Tracie...

I have always been very vocal about the amazing group of friends that I have had for the best years of my life.  They had no idea, but came into my life at a very crucial time and I am entirely grateful for them all.  One, in particular, has been my rock, my go-to girl and most importantly, my best girl-friend.  I have always been impressed with the person she continues to grow to be and quite honestly, she continues to amaze me...even when I know exactly what to expect from her.

Recently, a mutual friend of ours found out she needed a kidney transplant.  Tracie,without hesitation stepped up (as well as many wonderful others) and began the process to see if she was a possible match.  She is.

Trace, this is for you.  Even though I said it to you earlier today, I decided that you deserve to hear it again.  And because I want you to read and process what so many are thinking...I am speaking for the many who wish we could do what you are about to do.

You are a remarkable woman.  I can't help but think that your Mom is just beaming with pride and absolute approval.  This gift you are giving is beyond priceless...and has infinite rewards.  YOU are saving a life.  And even if something should happen and this not go as we all hope; it doesn't take away from the selfless gift you are offering to a mother, wife , daughter, sister, granddaughter and friend.  And to think how this will touch many in ways you never thought possible.  You are also giving the gift of hope. Hope that a husband and wife can continue to enjoy and watch their children grow, together.  Imagine what this act will do for the children who will grow to know that someone, you, went to great lengths to help their mother.  Think about how this will help to shape who they are to become.  And, of course, a husband who will most likely struggle to find the words he wants to properly thank you for all that you are offering.

I know that this makes you uncomfortable and that your wish is to make this anything but about you.  Too bad.  You deserve every word, well wish and compliment.  So much more is possible because you  made it so.  So read this, on your own and give yourself permission to accept all that we are saying to you.  You are so worth it.  Once again, you are giving someone a chance at a beautiful future, just as you did with each child that came into your heart and home. Roman.

Your  children will also take much from all of this.  You are a hero.  SuperMom.  Super Amazing.

Tracie, I am beyond words to express how boundlessly proud I am of you.  Thank you for always being an amazing friend. I love you, my little friend.  Godspeed.

Family Time

There is nothing that brings me more joy, than being a mommy.  This long weekend was almost perfect.  I only regret not encouraging the kids to call a friend more than I did.  I reminded them, but we were so caught up in things we normally don't get to do, that nothing else seemed to matter.  We crafted at our own pace while Christmas movies played in the background to help get us into the spirit. The kids went into the woods with their father to sit in a tree stand and check out the local turkey and deer.  The boys went outside and played in the first snow of the season while Emily and I planned out what gifts she would make for Christmas.  Everything...was done at our own pace.  It was wonderful.

Tonight, we celebrated our last night of this "vacation" with watching our new family fav, Once Upon a Time.  Alec was snuggled up with me.  I couldn't help but smile, close my eyes and soak in every little bit of my six year old baby.And soon he was asleep in my arms.  I made a silent wish.  "Please, let us stay like this forever."  The thought of these days being over, it overwhelming and sad, for me.

I have no idea where this all comes from.  I know that I have many regrets of not slowing down and enjoying my children as much as I feel I should have.  I definitely feel guilty for not being able to all the things I wanted to with them do because I wasn't feeling well these past few years.  And honestly, it's the days that I am feeling really good, that I get most sad about all I feel I missed.  All I know is that I can't get enough if my children.  Of course, they frustrate me and I do get angry with them, but never for long.  I am always so concerned about what is going on in their brilliant little minds and worry about their happiness.  I am sure some therapist would have a field day with me!

I don't feel that we really ever "grow in" to the person we are.  To me, that sounds like settling and ceasing to learn. I feel that I have evolved throughout the years and adapted as needed.  Life is an orchard of choices.  I have certainly, made some very poor choices.  That includes how I have handled myself...and my children.  

Nothing can prepare you for the day you struggle to properly restrain your newborn into that car seat for the very first time...and take him/her home.  From that moment on, the pressure is on!  The best I can describe it, from my point of view, is like juggling.  WHO in their right mind decided it was OK to send these children home with ME?  

When I think of all the transitions and evolving I have been through in the past 12 years while trying to pretend I have this parenting thing down (hahahahaha!), I wonder how it is even possible that my little angels have turn out to be such wonderful little people.  And as they get older, it gets harder. The position of "Head Role Model" plays an even greater role in their lives.  I find that I hold myself even more accountable for things because I feel they are paying attention now more than ever.  I sometimes wonder if these children were placed with me to keep me on my toes.  So that when I felt weary and disappointed with life, I would have to hold my head high, look straight forward and push on...BECAUSE I was under great observation.  There are ALWAYS six beautiful blue eyes watching me.  And should I fail to hold myself accountable, they surely will.  I know who is watching me.  God,  all my loved ones who have passed and my children.  I believe my obligation is to my children, first.  Because, if I do right by them, then I have pleased God 3X over!  Kind of like extreme couponing. :0)

I don't know.  I think I am just overwhelmed with all the emotion that comes with being a parent.  The unconditional love and acceptance is terribly hard for me to...believe I deserve.  At all. I am humbled by it all.  By all three of them.  I am so thankful.

And seriously, who doesn't get all warm and fuzzy when an adorable child falls asleep on them after a near perfect family weekend?

This year, I am thankful for my Rheumatoid Arthritis.  Although I struggle with time lost before, I understand that RA has made me appreciate and take advantage of the time I have NOW.  

I hope you all had a wonderful Thanksgiving as well~

Friday, November 16, 2012

A Perfect Gift

Having our children strive to be productive, generous and aware members of society has always been something we, as their parents, strive for.  I believe very strongly that this is something we lead by example as well as, work side-by-side with them to achieve.  I used to worry about how we would make this happen, and then I realized they have been doing it along with us all this time.  Tonight was a night I was reminded that we have been doing alright.  And it made me want to do more with them.

For an assignment for Scouts, Ethan was to nominate someone he thought was worthy of a citizenship award.  As I read my 10 year old's reasons for nominating this special person I realized that he really gets it.  Now, his first choice was an Uncle who wasn't eligible because he lived out of state. Ethan choose him because he "serves his community everyday and is a good police officer and gets all the bad guys when they are doing bad things."  We are so fortunate to be surrounded with so many that give of themselves every day to benefit others.  These are people in the community who put other's needs before their own, often putting themselves in danger.  These are the people my children look up to, and I hope, strive to be like.

Ethan, needs these people in his life.  We all do.  We all need to be reminded that giving of ourselves has bountiful rewards.  But my impulsive son truly needs these constant reminders of towing the line, being responsible and making the right choice.  He needs these people to help mold him into the amazing man he will surely someday be.  My little man is the most compassionate  child I have ever know in all my life.  He is going to make a great volunteer.  Along with my other two.  While Emily may not be comfortable with people, she has an amazing gift with animals.  She will bring comfort and compassion to God's furry gifts to us.  And my little Alec, no matter what he chooses, he will bring comfort with his smile.  Yes, all my children will bring something to society's table.

Volunteer organizations are suffering greatly.  Membership is down and those who have been in it for so long, are burned out.  No matter what the organization you are in there are always going to be the people who give all they can.  And unfortunately, there are those in it for all the wrong reasons.  It is entirely understandable why memberships are suffering.  Just look at our society.  Look at our lives.  We are constantly on the run.  Work, school,kids, house, meals, homework, social obligations, chores, is INSANE! We have 3 children with a combined average of 170 minutes of homework.  If they all need help...ugh!  This doesn't include the minutes all are supposed to read each night.  Violin, piano, scouts.  Practice 20, read 30, study.  I feel terrible, but last week when I read the note that came home from religion saying that they wanted the kids 10 extra minutes several times this season for a special mass...I was irritated.  Not just at our parish, just at (what seems like)everyone asking for 10 minutes here and there and wondering where and how!  We strictly limit our kids to one activity each for their own sanity, as well as, ours.  As it is, Ethan struggles and will occasionally melt down because he feels overwhelmed.  He is 10.

Despite all this, I hope we are able to instill in the kids that giving something of yourself is truly an obligation.  When I think about the reasons I love to camp, there is one that stands out from all the other reasons.  The people you meet.  They are fun loving people always looking and happy to lend a hand.  Nobody is afraid to ask and everyone is falling over themselves to offer.  This is the way the world is meant to run. We are all in this together.  Somehow, a false and terribly wrong sense of entitlement has come over...too many.  I don't want to blame a generation.  I'd rather enlighten and somehow ignite a sense of duty.

Our children will and should grow up knowing that there are basic expectations of them.  This is a gift to them. I hope that they live lives where, at the very least, their basic needs are met...through their very own hard work driven by their sense of responsibility to themselves, their families and society.  And should anything ever happen and they need to rely on assistance to get them through it, I want them to be able to take it without shame and a good amount of pride.  Because, I believe, that sense of pride is what will keep the "entitlement" bug away.

I will also expect that our children grow up knowing that they have an obligation to society.  To contribute.  To help.  To engage.  Somehow.  Even if only for a moment.  To give freely and without expectation is one of the greatest joys.  Something that seems to be lost on many...but not all.  As several little Cub Scouts brought to light today.

Tuesday, November 13, 2012

Birds and Bees, Sausage and Peppers

So last night, while sitting at the dinner table, THE question was asked and prefaced with the following. "Mommy.  I know that you have eggs and daddy has sperm thingies, but HOW do they get together?"  It was our middle child asking, but by the look on their faces, they ALL wanted the answer.  And I was totally not ready to give it.  Certainly not over dinner.

I remember my mom giving me "The Talk".  I remember it vividly.  We were making dinner.  I must have been about 10.  As I watched her stir up the zucchini and Italian sausage in the frying pan, she gave the horrible details.  Details I hadn't even asked for.  But something or someone must have inspired her to find out how many shades if pink my face would turn.  She was a mother on a mission.  I was a daughter...mortified.  To this day, my mother considers me a prude.  Probably, because any time she would bring up anything having to do with sex, I would just cringe.  There are things, at least in my opinion, children should never have to know about their parents.  Period.  When I was outed by her girlfriends for reading 50 Shades of Grey, she was giddy with excitement.  Seriously.  Giddy.  She was so proud of me. If you were to ask her to list and rank the times she was proud to be my mother, at the top: #1 Rachel Read the 50 Shades Trilogy.

I always knew the day would come when I would have to answer these questions.  And so far, I have been so proud of myself.  Ha!  Mrs. Smarty Pants!  I'll only answer JUST what they ask. Ha ha!! So in the past when they would ask where babies came from, we would answer truthfully, saying that mommies have eggs and daddys have little sperm that fertilize the eggs.  I was a GENIUS!  And was entirely certain that all the other mommies would be calling ME so I could aide them when their time came.  Ha ha ha!

What on earth was I supposed to say over Sunday dinner when they wanted the whole truth?  SUNDAY DINNER!

And where, pray tell, do you think their father was?  Somehow, in stealth mode...he "distapeered"! When I finally located and tried to lock eyes with him during the insistent inquisition, he could only turn and hide his smirk.  He was physically present...but totally AWOL.  I was alone.

Even our youngest, Alec was demanding an explanation.  Emily was just as persistent.  I was 50 Shades of Red.  My mother would have paid top dollar for a seat at the dinner table last night. Somehow, I just couldn't bring myself to give them the answers they were seeking.  Nor did I want to admit that this day had arrived.  I also wanted to spare them any visuals that could potentially scar them for life.  I needed more time.

I am sure that by now they have heard things on the bus or in school.  I also know that it is our job to make sure they have the right information.  A thousand thoughts went through my mind.  And all I could do was redirect and distract by asking what they wanted for dessert.  Thankfully, their little bellies took the bait and I escaped without having to answer.  But I know I will have to.

So, I am a believer in keeping it simple.  I also believe in the open door policy.  I want our kids to be able to come to us.  But if I appear uncomfortable, I fear they will be uncomfortable too.I am looking for some input and hoping there is a simple solution that I (The Former "Genius") may have overlooked.

In the meantime, I will be filling every moment with wholesome family fun ;0)  I wonder how Ward told Wally and The Beaver about the birds and the bees.  All these years, all those reruns and I somehow missed that episode.

Thursday, November 8, 2012


It has been a long time since I have been back here.  There are good reasons for this. Last January, I started with the Remicade infusions.  At first, there was little change in how I felt and functioned, then, slowly, I could feel the old me coming back, a bit.

This summer was full of activity for us. I was at times elated at the things I could do and the way I felt, while at others, I was frustrated that I couldn't do more. July was particularly busy and by the end, I knew I was slipping backwards, for sure.

With my rheumatoid arthritis, I have learned that if I let myself get rundown, infusions are less effective and wipe me out more.  After August's infusion, my rheumatologist decided it was time to increase the dose for infusion.  We also discussed changing some of my other meds.  For instance, I will most likely be starting with methotrexate injections, instead of the oral dose I take once a week (Methotrexate Mondays = Tired Tuesdays...ugh).  At this point, the increase of Remicade has had, in all honesty, no noticeable effect. This fall, has been such a letdown.  Fall is my favorite season. I love the colors, the feel and the smells.  I look forward to decorating, picking apples, making Gram's Dutch Apple cake, canning apple butter, planning our annual fall party, "September Soiree".  I take pride in our home and making it warm and inviting while preparing for the colder months to come.  Not this year.  I cancelled the party.  I just couldn't do it.  In fact...I barely participated in fall this year at all.  Because I felt, That.  Bad.

Here's the thing.  Fall didn't get cancelled because I was having a pity party, it was cancelled because I PHYSICALLY was not able to make it all happen.  I had pushed my way through the summer, telling myself and everyone else that I was doing great.  I wasn't.  I have been slipping backwards for months.  And about two weeks ago, I was starting to realize just how much.

I would lay down and my heart would beat so hard, I could feel it in my throat.  I was short of breath and pressure was building in my chest.  I have always had a slow and irregular heart beat.  I get a couple beats and a loooonnnnggg pause before another beat.  Lately, beat after the pause, comes as a huge THUMP! that can be seen just looking at my chest.  I have been here before.  Last time, I ignored too long and found out there was fluid around my heart and lungs (Pericardial Effusion) and was taken via ambulance from the office where I had just been given an echo, to the hospital.  Two days before Christmas.  Fortunately, there was a Christmas Miracle (as the nurses and doctors labeled it...and I agree!) and the fluid dissolved without any invasive treatment and I was home in time for Christmas.  I didn't want to progress that far again,so I called my doctor. I always hesitate, fearing that, I am making too much of things.  I am glad I did.

I wasn't going to write anything about this. But last night, when talking to my husband and finally telling him my fears and how misunderstood I feel...and scared I have been, he reminded me that here is where I am most understood and that I was doing a great disservice to the many that come to read and relate and be comforted.  I agree.  Not because I think I am some great, inspirational writer, but because I am moving through something in life that others are too.  Three times this week, I was told I was either at great risk for death, or "You could die".  Death is inevitable for everyone.  Ignorance is bliss.  There is only so much I can do do control when my time is up.  What I intend to do with the time from now until then, I intend to be quite powerful.  Every day, every second, someone, somewhere is learning what their fate will be.  By disease, violence...and sometimes, choice.  There is a silent pride that most of us carry.  As well as, a lack of self-importance.  Together, those two things can be life-threatening.  If I can change that for at least ONE person...

Right now, I am being monitored daily and feel like everyone has things under control.  Short story.  When I called, my PCP wanted me to come in. An in-office EKG showed an abnormal heart beat.  They called it, bigeminy with PVC, which lots of people have. The problem for me is the long pause, the shortness of breath , pressure, pain and feeling like crap. They told me to go home, pack a bag, make arrangements for the kids because they were going to admit me overnight for observation and cardiac consult.  I was in the ER for about 6 hours, they could see what was happening, gave me troprol (said to make contractions stronger), monitored me for about thirty minutes, told me they spoke with my docs and were going to send me home.  I was all good with that, I could be home in my own bed.  And because they told me they spoke with docs, I thought I was fine.  Not so much.  At 7:15 am, the docs office called and wanted me to come in for a follow-up.  They were upset that I was sent home.  The hospital reported that I was feeling better (never said that) and was asymptomatic. I was asked what happened in the er. I told them.  Doc's words, "Liars!  That has been happening a lot."  Repeat ekg.  No change. Pressure in my chest is a bit worse and I still feel terrible.  I am sent for an echo and to a cardiologist.  Cardiologist somewhat dismisses my issues and states, "lots of people have these [PVC'], I have them too."  Really, so do I.  In fact, I have known I have had them for as long as I can remember.  Ass.  Never complained about them before. Ass.  I WAS SENT TO YOU...didn't decide I had nothing better going on and thought I would come and chat with you.  ASS!  Adding(with a smirk), "Next time, take an extra dose of the troprol instead of going to the er."  I knew right then and there, this was not the doc for me.  He spent 10 minutes with me.  Listened to my heart for no more than 10 seconds.  I cannot say whether or not, for sure, if he viewed any of my file at all.  What I can say, if he had, at all, he would have know what I, thankfully knew for myself.  I have a low heart rate.  That is a blood pressure medicine.  Doubling up...not good at all.

That night,  There is greater pressure in my chest, shortness of breath is worse and I have pain near my collar bone/shoulder area and around my back (bra strap level and higher).  In my head, I am wondering, if I am either having or going to have a heart attack.  I know that if I call the doctor, they are going to send me to the ER (not much faith there).  I am also thinking, "what if it's not?  I will have to call someone for the kids, Jim will miss on sleep and be late for work.  But what if it is.  Having RA already puts me at risk for heart disease, not to mention it runs rampant in my family.  Granddad.  My Aunt who went to lay down a year ago, and never woke up.  No no no.   It could be the fibromyalsia.  You haven't been feeling well.  But what if it is not.  I am also thinking about the fluid around my heart and the increase pressure in my lungs indicating the same fluid issue.  And I hope it's that.  That can wait until morning, right?"

I am on a lot of meds.  Most people with RA are.  And a new one has just been added since the last trip to the ER.  Our neighbor is a pharmacist.  I don't want them to know or worry...or think I am crazy, so I try to make lite of it.  I need to know if an aspirin will have any interactions with anything I am taking. I get the green lite.  Chew the aspirin, pray and go to sleep.  Next morning, I call the doctor's office.  I am told to go to ER, NOW.  I hesitate. It is a lot.  I don't want everyone to worry.  What if it's nothing?  What if they send me home again?  I call back and tell them not to look for me there and I tell her that I will just do what the cardiologist said and double up on the toprol.  She strongly advises me over and over again to go to the ER. I get off the phone, pill bottle in hand...put it down and try to continue the day.  Noon. I am not at all better.  I decide I will shower and if I still am not better, I will relent. Doctor's office calls and says they want me to come in for another EKG.  No change.  The nurse notices that I am dizzy when I sit up and decides to take my blood pressure and heart rate.  26 beats per minute.  TWENTY SIX.  Doc comes in and asks what cardio doc had to say.  I tell her about the "double up".  "YOU CAN'T DO THAT!  NOT WITH A HEART RATE OF 36!!!".  Know your body.  Listen to your instincts.

I am outfitted with a halter monitor and scheduled for a tilt table test.  Increase steroids to 40mg per day (CRAP!  I was down to alternating dose of 5 or 10mg/day!  There goes that 30lbs I have lost!).  They draw blood for Cortisol and order up more blood work.  I am also asked to call the next day and give a report.

While I was in there, I was very apologetic.  I was.  When the doc walked in,I said, "I am sorry.  If you tell me right now to go in, I will."  She is reassuring and comforting and tells me she understands why I didn't want to go to the ER, "Because they didn't do anything for you. But I needed to see you."  The nurse is just as wonderful and tells me a story as she is wiring me up. The morale of the story was that you should always listen to your gut instinct.  And that it is easier when it comes to your children, but hard when it comes to ourselves.  She is so right.

There was a flurry of activity in that little exam room for a bit.  Another doctor came in to talk to me about what is happening.  They aren't sure, but have a plan.  He explains the two avenues they are exploring.  I feel so defeated and at the same time, oddly, relieved.  I thank both doctors.  Doctor W.  says to me, "Rachel, don't feel like you need to be sorry or that you can't call.  You are symptomatic.  There is something going on and we are here to help.  This is the exciting stuff.  This is the stuff we went to medical school for."  I can't believe I didn't break down right there.

This is My RA.  We knew this from the start.  For me, it is beyond degenerative joint inflammation and pain.  It is constant low grade temps. Stiffness.  Exhaustion. And worry when there is pressure in my chest and I have difficulty breathing.  It is wondering when it is the right time to call.  What to shrug off...and if I shrug this off, will I be OK?  It is a basket full of pill bottles, constant monitoring prescription supplies and 3 pill boxes because morning, noon and night I swallow at least 24 pills, total to keep me moving.  It's pushing myself beyond what my body wants me to, because I don't want to accept that I can't do something.  It's scary.  It's telling your husband that maybe we should hold off his "procedure"...because if something should happen to me, and should he want to have another child with someone else, we should wait.  Yes, it is that scary.

I am not weak. I am struggling.  This is not easy. It never has been. I have never been "unflared".  The effects have been somewhat lessened, but never quieted.  My RA is exhausting.  Just when I came to terms with what I thought life with RA was going to be like, everything changed, again.

I know this is more common that many are aware of.  Please, listen to your body.  Don't take chances.  And know that, just because "DR." precedes their name, it doesn't make them the boss of YOU.  Two times, in three days, I was dangerously disregarded.  In the three years that I have been discovering My RA, I have learned this:  If you are sitting in that examination room, and it doesn't feel right...leave.  Then go and find your "right".  This is your life and only you can determine how you are going to live and move through it.  Never again will I put my head down on my pillow at night and wonder if I have just kissed my babies and husband for the last time because I am at odds with what my instincts are telling me and what some "DR." smirked off.  Never.  Ever.  Again.

Thursday, April 19, 2012


I have taken a break from writing anything when it comes to my RA and fibromyalgia symptoms and any complications of.  Honestly, it gets a little old, for everyone, I think.  I'm living it and want to escape it.  Even when it came to the blog or posts from Kelly Young, Rheumatoid Arthritis Warrior (not a reflection on her or the blog, just my issue and how I was feeling), I love reading hers, but was starting to feel like I was drowning in it and while some in cyber space got it, some of those living closest to me, didn't.  It's hard to live in two different worlds.  I am sure this happens to a lot of people living and dealing with a number of issues.  It is tough to have to think that no one really gets what ever your "it" is.

I was pleasantly surprised when I opened up the computer this morning to find a post from Kelly at "This disease is similar to Lupus and no one says "Lupus arthritis." Changing the name of #Rheumatoid disease so it's not incorrectly referred to as "a type of arthritis." We are DOING it!".  I don't know what it was about that post, but it stirred something inside of me.  I couldn't wait to get the kids ready and out the door for school because my mind was racing and my fingers wanted to hit the keyboard running.

I cannot tell you how misunderstood this disease is.  I have had the owner of a cross stitch shop say to me, "I have customers who have ra and they aren't this bad."  I'm sorry, but I couldn't hold the loop in one hand and a needle between my thumb and any finger.  Either their treatment is really working for them or you are confusing this with arthritis.  I can't even hold a book open!  And that is a big part of the problem.  Everybody knows somebody with arthritis.  And many don't know or understand the difference between rheumatoid arthritis and arthritis.

I know the difference.  I feel the difference.  I am reminded the difference each time I am sent for an echo cardiogram.  Or each time I experience back pain and have to worry if I am getting another kidney infection.  When I hit a wave of exhaustion I know I wouldn't otherwise if not for ra.  The almost daily low grade temps remind me.  And of course, the relentless pain...that screams at me.  What should be simple daily tasks and the difficulty doing them remind me.

I, and many others, I am sure, am my own worst enemy.  I am too proud.  I do not want to ask for help or have to explain why I can't do something. Partially because I know, for a fact, that RA is terribly misunderstood.  It is a disease.  One that I live with daily. I often feel like, because ra is so misunderstood, that people suspect that I am just being lazy which is something I am far from.

But, it has occurred to me recently, if I don't care of myself, one of my biggest fears surely will come true.  Being a burden.  I don't want to be any more of a burden to my family than I have to be.  So I have to do some things to make this happen.  One of those (**hard swallow to clear the lump) is to embrace rheumatoid arthritis.  It is mine and all mine.  And it is up to me on how I choose to handle it.  By handle it, I mean fight it with all I have got.  And that means, making myself the healthiest me I can be even with RA.  

I don't care what anyone thinks my RA is like.  Because, I assure you, it isn't just arthritis.  What anyone can do, is get in my face and ask me what I have done to change the course of what my RA has or will do to me.  Go ahead, challenge me.  I guarantee you, I will fight harder than I ever have to make this disease the best it can be, for me.

Every time I walk into my wonderful (I say that with a smile, because I am lucky to have them) rheumatologist's office, it is in my face what is in store for me.  Would I rather have a walker or cane than a wheelchair.  You betcha.  That means, get this weight off.  Which means a healthier heart (did you know that heart disease is also a major risk and reality for people with RA?).  I understand that I may still wind up in a wheelchair, but it won't be without kick ass effort.

There will be people who underestimate what this disease really means and what toll it takes on me.  That doesn't mean I have to.  And I won't.  But I will fight for myself and my family.  When I die, I want my family to be proud of who I was and how hard I fought to be with them healthy for as long as I could.  I don't want to be remembered as a burden.  I can't think of one good reason not to fight this as hard as I can.

I have been told I have a gift in writing.  I will use that gift to heal my own wounds and continue to reach out to others.  It is so important to be and feel understood.  The link to the following song and lyrics speaks volumes to and about myself as well as many others.  I am not sure how it ties into this post but I found it going round and about in my head as I wrote.  I think that we all need to hear these words sometimes. 

Tuesday, April 17, 2012

Fighting the Good Fight

For a little more than a month, I have been hesitant to write.  And here's why.  I have this friend, from high school.  When we were actually in high school, my contact with her was minimal.  However, with facebook, that has changed.  If only, back then, we could see what was to happen in the future.  Facebook has done this for me many times over.  Some wonderful friendships have been established, re-established and strengthened.  This is facebook at it's best.  One of these friendships; reconnection's I am thankful for is with a girl I knew as Michal.  Many now call her Mary.  Mary Michal Workman Eggers.

With those closest to me, I am known to be quite hard on myself.  Recently, I was paid a great compliment in an email sent to me.  As I read it, I felt I was undeserving of this because all I could think of was Michal.  The email included a story about someone who, even in the face of their own suffering, was always thinking of others.  It was the story of Jesus and the Stations of the Cross.  I forwarded this to her with the same explanation I am about to say here.  I am Catholic.  I am by no means a "Bible pusher".  This came about because my daughter was involved in the ceremony at church.  Apparently, my husband related this story to me in ways and wanted to let me know.  It was a great compliment that I had trouble receiving.

So Michal.  Yeah.  You may have heard of her.  She's the crazy chick, who while on a run, decided to tweet Lance Armstrong and challenge him to a 50-meter kick off in a pool!  No, she wasn't run off the road or hit by a car (this time), or have a collision with deer while on said run(this time).  This came to her in a completely (arguably) sane moment.  She did it for a very select group of special teens.  Who happen to have cancer.  She did it to help raise money.  For them.  Teens Living with Cancer.

I am going to try my best to link what ever I can here.  This is not my forte.  This is partially why I have been so quiet on here.  My technical skills suck.  But I know how to link a youtube video and I found one today!  The other reason for not writing, is because I felt I had no right to, not for one single second, complain or take, in any way, away from what Michal is trying to accomplish.  I vowed to share what I could, where I could.  So!  Hopefully, I can do some good here.

There is so much out there now about what Michal/Lance/TLC is all about.  I wouldn't be capable of giving it the justice it deserves.  Hopefully, I can start with this link Dual in the Pool .

Hey!  I think I've got this!  Here is the reason Michal is fighting this fight always and especially on April 28th along with Lance Armstrong!  Dear Melissa

I encourage you all to take a minute to watch this video, read Mary/Michal's special letter and to make a donation for DUAL IN THE POOL!!  The following link will tell more about DUAL IN THE POOL!!! As well as provide a link to make your generous and greatly needed donations.  Make your donations here!!

Holy Cow!!  I'm a linker.  I am a blog linker!! Watch out!!

Seriously.  Thank you for taking the time, each time you do, to read.  This is one of the most important posts I have ever put out.  Cancer has touched too many.  It  also has and continues to take too many from us.  Nobody deserves cancer.  Least of all, children.  As adults, it is difficult for us to process such a life altering diagnosis.  Yet these are children, who are expected to process the same when they have barely had the time to navigate life.  Let's fight this together.  Let's help, in any amount we are able.  Every penny counts.  I just learned that "just TEN DOLLARS provides one hour of hope for a teen facing cancer". 

If I haven't provided enough information, I apologize. I am slightly distracted and multi-tasking.  But it was important to me to get this out.  You can read more and be deeply inspired by checking out Mary Michal's blog at

I am constantly amazed by what this woman is capable of.  You will be too.

Sunday, April 15, 2012

Just. One. Look.

It was time to go clothes shopping again.  I was looking forward to it because by the way my clothes were fitting, it was clear I had dropped a few or my body shaped changed again.  I notice that I don't dread shopping for clothing as much any more.  It is what it is.  I am who I am.  No matter what shape.  And while many do not know why (at this point) there is little I can do to change the way I look, I know the truth.  I am working towards it.  Along with my docs.  And besides, I have learned to accept that it doesn't matter to the people who really love me, what I look like.  Me, on the other hand...well...

Honestly, at this point, my biggest worry or stress about shopping, is for shoes.  Having arthritic feet make shopping for cute shoes impossible.  They have to be supportive in all the right places, little to no heel and there is no question, they have to be roomy and comfortable.  If they are not, the pain can be excruciating enough to be burned into my brain so I can NEVER make that mistake again.  I somewhat made it past that hurdle.  Comfort is key to a better life.  Daily pain is inevitable, there is no reason to stand in line for more.  Ever.  If I were a millionaire, I would design cute shoes for people like me.  There are a lot of us who would greatly appreciate it.

So into the dressing room, I go.  With pants that are TWO WHOLE SIZES SMALLER!  I optimistically pulled a 20 off the rack fully anticipating having to try on a 22.  And the tops, I grabbed 1X.  Those, I was pretty sure of.  Smaller would be nice, but this (somewhat shrinking) rack of mine, makes this difficult.  Nevertheless, I no longer require the "2" in front of the X.  Progress.

"Do not stand in front of the mirror."  I tell myself.  My sister and her family had just left an hour or so ago to return to their home about 10ish hours away.  I was still tender and puffy-eyed from that good-bye.  I knew that the sight of myself in the mirror would be too much.  There is much I have learned to accept.  The reality of my body staring back at me in a mirror, is not one of them.  I know that we are supposed to love ourselves first.  I have to say that any progress I make, slips away, when I see me.  I can't take it.  I am super critical and hateful feelings are inevitable.  I haven't learned to navigate this, yet.  I know I am not alone.

So I didn't.  I stood to the side and undressed, dressed and undressed again. Only standing before the mirror when I was draped in clothing.  "Oh my God! They fit!  Woo Hoo!  Not bad..." It was all good.  Until I tried on another pair of pants.  Oh, they fit, but somehow they made the excess skin and flab terribly noticeable and ugly.  As I struggled to get them off quickly, I looked to the ceiling.  Not because I was avoiding the mirror, but because I was blinking away tears.  It was too late.  Damage was done.

Usually at the end of my post, I have come to some solution, some promise, some peace.  This time, I got nothing.  I am not looking for positive words to come to me here.  I am simply stating this so that maybe I can help someone else not feel alone.  Like a failure.  This [blog] has always meant to be about honesty.  Brutal or beautiful.  This is not beautiful honesty.  I know that there is another woman out there who goes through this very same dance.  This is who I write for.  We know what we need to do, have to do.  But what some (outsiders) fail to notice are the roadblocks before us. The ones we put there ourselves and the ones we have no control over.  Beneath all those excuses and best intentions are the very raw, stuffed down feelings.  That only come out when we are alone; standing in front of the very close to tears.  Just one look.  That's all it took.

Wouldn't know this to look at me, would you?  Imagine how many others there are.

Tuesday, March 6, 2012

Acceptance & Change

Moving forward.  No looking back, no more wishing for what was.  Learning to appreciate what is.  A lot has changed over the years.   When I look in the mirror, the person I see is entirely different in so many ways.  I am no longer thin.  I no longer have the ability to move the way I used to.  I could  choose to look at everything as what I can't do or don't look like any longer.  But that would just be silly.  And downright destructive.

Not too long ago I was completely overwhelmed with all that was happening.  I've been scared, angry, frustrated, in complete denial and simply defeated.  Or so I thought.  Momentary insanity.  I am not easily defeated.  I have always been a fighter.  The problem is, I had been fighting myself and not even knowing it.  I was so determined to keep on as though nothing had changed; even though it had, drastically.  It took me to run myself right into the ground to understand how utterly stupid I had been.  And even though the words had been spoken to me several (several, several, several!) times before, I was finally ready to listen.  It was strange.  I was better than the year prior, but somehow, beyond weak.  Acceptance had truly set in.  It was time to slow down and possibly stop for a bit.  The words were said differently by many, including my doctor, but they translated to the same message to me.  "You have never given yourself time to get better."  And like I said before, these words were spoken many times to me.  Yet, I never heard them.

If it is expected of me, I will deliver.  I hadn't been honest with myself and many others.  I wanted to keep going like nothing had changed.  No resting, no excuses.  No disappointment.  The results weren't what I would have liked. 

Pushing myself didn't make me any stronger.  It only made me more sick.  Sick.  That is what the general feeling is.  Pushing and resisting what my body was trying to tell me, took away from what I wanted to give to my family.  Me.  I wanted to be with them.  Not just physically present, but mentally.  And really there.  Masking the amount of pain I deal with daily is an exhausting chore.  I can overcome it and rise above it most of the time.  I reserve pain medication for bedtime only so I can be alert during the day.  This does not mean that I am not in pain during the day.  Good God, it doesn't mean that at all.  I spend a considerable amount of time rising above and sucking it up.  It is a preoccupation of the head.  Playing a game of SORRY, can be hard for me.  But I do it. 

Things are getting easier.  The infusions seem to be doing something, which is more than those painful (but worth it, if they had worked) injections.  It is hard to say how much of this has to do with the changes we have put in place. Now, our home is "shut-down" by 6pm.  That is when my workday ends.  Period.  "I am sorry, but I cannot..." are new words added to my vocabulary.  I am not a napper, but when I feel the exhaustion setting in, I settle down and enjoy this new thing in our home, called cable tv.  And the acceptance.  It doesn't come all at once, but rather in waves.  And my acceptance by no means, is defeat.  To the contrary.  I am learning that it can make a person stronger.

Today, I can honestly say that I feel more like myself than I have in a long time.  Even though yesterday was a rough day, I can still say that.  That says so much.  Acceptance means making changes.  I am learning to look forward to them instead of resisting it.  It helps that my husband is on-board to.  He had been having some of the same resist issues as me.  That was hard for me.  Mostly because, no one is harder on me, than I am.  So when he was initially resisting the idea of moving the laundry room upstairs, it bothered me.  Because I was right in my assumption.  He thought I would get angry enough and will myself to be able to use the stairs to get to the laundry more often.  Because, that is who I am.  I felt I was disappointing him.  We both needed to accept some things.  It is hard for me to be less independent and feel more of a burden. 

In the end, he is all for it.  And more.  Our bathroom needs a new shower. While I am adamant about not having one of those tubs for people with arthritis, it will be a safe place.  Even our bedroom is going to have some change.  In color.  I spent so much time in there, sick, that being in there makes me uncomfortable.  The early years of my OCD, the idea of change paralyzed me.  Now, it is what I need to survive.  Kinda funny how that worked out.

A year ago, I would have never asked for or accepted these changes.  I would have been angry at the suggestion of them.  Because it would have meant I would not be better or that I wasn't strong enough.  I understand now that is far from the truth.  I am capable of doing everything I put my mind too.  Even if it means accepting help and change.

First, get stronger.  Second, obliterate some LBS!  I am coming back!

Wednesday, February 1, 2012

A Time to Rest

It has been a while since I have been here to write.  Thank you to my loyal readers and supporters for checking in.  Three weeks ago, I started with the infusions.  The day I had my first one, I was in rough shape and expected far too much of myself and the new treatment.  It wiped me out for DAYS!  I can't say that I noticed much.  Initially, I thought my hands were feeling better, but that quickly fleeted.  My second infusion was last week and I was told that it could take a couple of months :0(.  Onward and upward.  I am still better than 2 (almost 3) years ago and as of a year ago, this pain has a name.  Two, actually.  And I think I have found a good fit with my new rheumatologist.  I'm in a good place, considering.

We live and we learn.  I live and love with daily chronic pain. I push myself to limits I have learned not to expect of others.  There will always be those who wont try or want to understand my limitations (which are exceptionally high as I expect more from keep myself from expecting any less!).  It is not up to them to set my limits for me. I got that.  From now on, I totally got that.  I can no longer wait for others to recognize where my limits are simply because I tell myself that if they think I can, then I should. 

This blog started with an epiphany.  It is the one constant in almost every post.  This is my voice, my art and my very exposed heart.  What is the epiphany this time?  When the doctor says, "it is too much.  You need to rest.  Without rest, [recovery and gains] will be lost.", it means...REST!  Nobody can do it for me.  Maybe it is about time I start acting like I feel...sick.  For just a bit.  Only a bit.  I owe this to myself, to my husband and to my children.  I am not giving in to it.  I am not failing.  I am not weak.  I am simply doing what anybody with the flu (which is the best, simple, example I can give to this) would do.  Recover and get stronger.  I got my fight on.  LOL!  My body ALWAYS has it's fight on!!  Damn conflicted immune system.

I am three weeks out from the next infusion.  I will be spending the time up until and maybe some past, doing what I want to do.  I have so much to be thankful for.  I have my husband, children friends and family who faithfully have my back.  Fingers willing, I will be back here more often.  Know that I read and appreciate EVERY comment and email even if there is no response.  They are all very important and inspiring and I don't want to place a value of one over another, so if I can't respond to all, I won't at all.  I know you understand and thank you for that as well.

Stay well, strong and full of faith!

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!