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Thursday, August 25, 2011

Make a Wish...

If someone were to ask me right now what I want for my birthday, the answer would be simple.  Making it happen would not.  What I want, is to find an envelope in the mailbox addressed to me in my Gram's handwriting.  She never forgot, ever.  Until the past few years.

It's not for the cash that would fall from the card when I opened it.  It's for the joy I felt when I saw her writing.  When she addressed me as "Ra Ra" in the card.  And for the lingering scent only Gram's house had, still infused in the card. As though she had written it using a scented pen called Gram's House. Sometimes she would draw vines with little flowers growing on them.  I still do that sometimes. I miss her so much.  She is still here and I miss her so damn much.

My children love and miss her too.  Alec was away at his Grandparents house for a couple days and came back with several drawings.  One, he made for Great Gram.  Little does he know, as tight as their bond is, he is slipping from her memory too.  She is that amazing.  He is five and she made such an impression on my little man in his earliest years and he talks about her often.  I want her back.

On my birthday, I will go to her.  Not that my birthday is all that special, but because she made me feel that way; every time she spoke to me and held me.  It's my chance to return the favor.  I can't think of a better way to spend the day than to let her know how special she is to me.  Even if she recalls the time for only a brief moment.  Because I understand that someday, it will be more than a card I am wishing for...

Wednesday, August 24, 2011

The Funny Side

Let's face it.  If I wanted to, I could sit here and write each day on the woe's of daily life with RA and the strife that fibromyalsia can cause.  But, I don't want to.  Because that would not be a true picture of who I really am.  Sure, sometimes I can get lost in it all, but who wouldn't?  It friggin hurts.  I don't mind sitting here and letting my inner feelings flow through my fingertips to this computer screen.  It can be very therapeutic; and sometimes too heavy.  Even for me.  And I am the one going through it.  For the most part, I have a great sense of humour.  When I've lost that, send help.  Fast.

There is a funny side to rheumatoid arthritis (seriously, funny just happened now as my husband chuckled when I asked, "Do you think rheumatoid arthritis should be capitalized?  Because I don't.  I don't think it deserves it!"...that's a perfect me) & fibromyalsia.  Things happen to you, your mind and your body.  If you can't laugh about it, you will find yourself sinking into a deep depressive state.  I don't know about you, but I choose...funny!

The Funny Side of RA & Fibromyalsia

  • The way I tie my shoes:  When I look down at my feet, it reminds me of when I was pregnant.  My shoelaces are tied off to the side because I can't bend to my feet, so I have to bring my feet to my hands.  Anyway I can get them there! there is the belly fat factor too...but still, before my body started to attack it's own joints, I was able to tie straight on!

  • Fibro-fog:  This is real.  The theory is that your brain is so pre-occupied with the pain, that carrying on simple conversations or remembering details can be difficult.  I wander aimlessly about the house hoping that something will trigger my memory.  I used to get annoyed.  Now I forget to do that too.

  • The joy of stepping OVER objects on the floor:  Because it is simply too hard or painful to bend to pick them up.  Besides, the rest of my family does it... :0)

  • The Tin Man Walking.  Watch a person with arthritis get up from a chair.  It's slow at first and then as they start to move more, they pick up the pace.  And then, they slow a bit.  Their bodies need some oiling.  Just like the Tin Man in The Wizard of OZ.  Sometimes, I draw for the children's classic, The Little Engine That Could.  "I think I can, I think I can..."  as I move faster and faster (well, at least for me!).I also have trouble coming to an abrupt stop.  That is most painful on the old joints.

  • Hovering is no longer an option.  I HATE public restrooms.  I was once a professional hoverer.  Even after 3 knee surgeries. Now, if I were brave enough to attempt, my body rejects the whole idea of the hover and threatens to drop my area of no public contact onto or, heaven forbid, into the toilet.  It's not good.  I've had to overcome some unpleasant feelings and now I sit.  Honestly, I never overcame the unpleasant feelings.  Like everything else, I deal with it.  Yuck...
  • Listening to stupid comments.  One of my favorites; "Wait until you get to be my age and see what it feels like."  What I want to say is, "wish I knew what it was like to be in a healthy 36/37 year old body.  Without RA."  But I don't.  Ever.  In fact I often sit by in silence and listen to others aches and pains(which everyone is entitled to complain about.  I am speaking if the frequent offender who does nothing but complain...over a paper cut!).  They have little of no idea of mine and I most likely will never tell.  Don't get me wrong, there are a select few who really know.  It used to irritate me, now I just smile inside.  This is mine.  Because I am strong enough. 
  •  The Dropsies.  I drop things.  A lot.  The kids and I make jokes of it.
I have to laugh, I choose to much as I can.  And when I can't...I seek support to get me back to laughter.  Even if for just a moment. It's a moment RA can't have!

Sunday, August 21, 2011

I Can't

So, I thought I had this whole thing figured out.  In fact, if you read back, it seems that over and over again I seem to think I have it all figured out.  Reflect, start anew, get back's all there.  Yet, this past weekend, there were some new revelations.  I've got nothing figured out!

I have been feeling better, a bit more pep in my step and I seem to be able to tolerate outings better and actually look forward to invitations to gatherings.  What has most improved is my attitude towards myself.  A few months back I had decided to make sure there were clothes in my closet that were comfortable and actually fit me.  I went out and bought clothes even though they were in sizes I wasn't comfortable with admitting I could fit into.  This has made getting ready to go out so much easier.  I can't tell you when the last time I stood in tears and panic before the mirror moments before we were to be leaving was.  Also making the transition easier was taking some of the blame off of myself.  Steroids do a number on your body.  Those close to me know how hard I am on myself.  Releasing some of the blame was key.  And lets not forget embracing the fact that so many accept me for who I am. I was/am the only one with a problem about how I looked.

As much as I want to believe that I am in control of this whole fibromyalsia and RA thing, I am not.  Next month will be one year that the fibro diagnosis was given and December will be the one year mark for the RA diagnosis.  I have come a long way, but am still struggling to find the norm. It's frustrating. Not only for me, but for my dear husband as well.  I keep thinking I can get back to where I was before and he keeps trying to remind me that I may not be able to.  I don't want to hear it.  So I push and then crash.  And then I get angry.  I want my old life back. I have never asked, why me? Most certainly, why now?

The words, "I can't" have never been comfortable crossing my lips.  I hear them bouncing off the walls in my head, but I struggle to get them out.  "I can't" is weakness.  I am not weak.  It sounds like I am giving up.  I have to change this way of thinking.  "I can't" does not have to mean I am giving up or unwilling.  That is what I really am struggling with. There is so much guilt about how much has been placed on my husband since this all started a couple of years ago, that I feel like, I can't, is inappropriate to say.

But, it is exactly what he wants to hear me say more often.  Several times in the past months I have asked myself, what are we doing here in this house, with this massive property surrounding it?  It is terribly painful to see the flower beds and gardens that are not up to par because we/I can't get to them.  Sure, we have finally nailed down, as a family how to keep the inside proper, but the outside, I am so embarrassed.  And then we argue because I can't let it go.  I let it all get to me and my emotions get the best of me and then it all comes out.  I can't keep up and I don't know what to do about it. He got very upset with me when I said that I would rather have people (who know us) drive by and say, "wow, I don't know how they do it" versus them seeing beds overgrown and understanding that we just can't. Because of me.  Because of this stupid RA and it's partner.  Because it could mean that I am letting it win.

So now there is a new resolution.  We will wait. Until the fall and until the spring.  And we will hope that I will continue to feel and move better and we can keep on top next year.  We will communicate more.  I was the one who usually took care of the beds in terms of clearing out and keeping up on the weeds.  Now, if I don't get to it, I'll tell him and he will get on it.  We will work together better than we have in the past.  I can't do it all and I don't have to worry about it.

I have also realized that I am not going to wake up one day and RA will be absent.  I can't have my old life back.  At least not exactly as it was.  We will continue to modify and take it one day at a time.  So that I can do so much more with so much less frustration.  I can't let this get the better of me.  And I won't. Ever.

Tuesday, August 9, 2011

RA Pain (Real Agonizing Pain)

I am fairly new on the RA front.  And whereas a lot of the time, I feel I don't have enough to speak on or about, I think when it comes to managing pain, I've got enough to go on.

Pain was the first indication that something was wrong(before diagnosis).  Ache was more like it.  A dull achy feeling all over that wouldn't rest or let me rest.  It was terribly obvious at night when I would try to sleep.  I was in a lot of pain.  After being told it could be Restless Leg Syndrome, among other things I disagreed with, my primary care doctor finally relented and prescribed Prednisone.  Relief was almost immediate.  I could sleep.  I could get out of bed and put my feet to the floor.  There was no more cane.  I was referred to a Rheumatologist. 

In my medicine cabinet was already an arsenal of pain relief.  Prior to all of this, I RARELY took any that were prescribed for me.  Not for knee surgery, gall bladder removal, tooth extraction, etc.  MAYBE, the first day, but after...nope.  RA, however, this was constant, relentless PAIN.  I have a family with small children.  We are active and I want to be present and involved.

My primary doctors has already given me 800mg of Motrin, but because if issues with my kidneys, I couldn't take that any more.  He then prescribed Vicodin.  I was terrified to take it because I heard that this is the stuff that moms get addicted to all the time.  How?  I am not sure.  Because, it knocks me out!  I started taking it maybe once a week at bedtime and promised myself I wouldn't take it any more that 2-3 times per week.  My husband told me that ten minutes after taking it, I would let out this sigh and that he could actually see my whole body drop in relaxation. I was really sleeping.  That little pill took the edge off enough so I could sleep.  That hadn't happened in over a year.  It was obvious that my body needed the rest.  So I began taking the pill every night.

When it was time for a refill (6 months after the original fill date!), I was so nervous to ask.  I was afraid the doctor was going to think I was an addict.  This time, I asked my rheumy to fill it.  He did.  And I have been taking it for the past few months, at bedtime.  At my last visit, he mentioned to me that I should try to skip some nights.  I wanted to take his head off and defend myself. 

I don't like taking all this crap.  We are all on some sort of cocktail to keep this disease at bay.  I went from taking a birth control pill (one pill!) at night, to...I am not even going to mention what I take in a day.  Trust me doc, I wouldn't take it if I didn't need it!  AND!  For the record, doc, I have taken it upon myself in the past to adjust my steroids, when needed.  I did that because you failed to recognize my desire to be with my family and FUNCTIONING  on a camping trip(s).  If I had a penny for every time in these past couple of years I have said to the doctors, "Do you have children??  Do you have any idea what this is like?"  Two did not (one until recently) and one did, but the memory of how taxing being a mommy/parent can be seemed to be lost.

I was stunned to hear that there are docs who do not discuss or offer pain relief.  STUNNED!  Really?  Everything that I read and hear talks of the pain of RA.  I am fortunate that I was given something(even though at first it wasn't for RA).  Lord knows, back then, I would have never asked.  Pain is present almost always. Even at that, I sometimes realize how much I block out, or try to.  It is evident in my short temper and difficulty speaking...and extreme fatigue (which is another topic that should be explored!).  I have yet to figure out what to do about daily pain.  

I have to admit, I am less than thrilled with my rheumatologist.  I often walk out feeling like I haven't been heard.  I know that sometimes, it is a wait and see.  Why should I have to remind him how long I have been waiting and seeing?  Why do I have to remind him that I have lost 2 precious years with my children?  Sure, I am here, but not down in the dirt, hiking through our woods with them.  They notice.  They know that mommy hurts.  Why should I be afraid to ask for more?  More relief?  For a documented painful disease?  Why should anybody?

No.  My pain is NOT under control. I am thankful for the ability to sleep.  But what I would really like is the ability to move through the day.  To kneel down and tend to my gardens and kiss a boo-boo.  To navigate the stairs to get the laundry done.  To clasp my own bra. Yes, Dr. ______, the inflammation is down.  Yes, my joints don't feel as squishy.  But I hurt.  What are we going to do about that?  What?  You want to try weaning me off the steroids, again?  Fine.  But what are we going to do about the pain?  And suddenly, I am at the receptionist desk making my next appointment, walking to the car and understanding that I am exactly where I was when I drove in this morning.  I realize this as I grip the steering wheel and my less swollen, no squishy joints scream at me.  I am in pain.  And there never seems to be a plan for pain. 


RA pain is real.  And so are the lives that we are living or not living.  Primary care doctors are generally not equipped to deal with the effects of RA, or don't want to.  It is confusing to be between two doctors, hoping that one will recognize and hear, really hear, what is happening.  What I would give to hear, just once, "lets get you comfortable".  And to know that there is real effort and concern behind it.  Not just when I am in your face.  While I would never wish this on anyone, I wouldn't mind if the docs spent just one our shoes.

Friday, August 5, 2011

Believe it~or Not!

"I believe what you have is something called Fibromyalsia."  These are the words that were spoken to me last October by my primary care doctor.  After more than a year of not being well, without obvious reason, this is what he came up with.  I was pissed. 

Although I understood that, of all the other illnesses they were looking at (RA, Lupus, & MS), Fibromyalsia would be the best of all the circumstances.  It has no long-term damaging effects along with no impact on lifespan.  We'll talk later about the impact fibromyalsia undeniably has on day-to-day life. So this diagnosis was good, right?  Wrong.  Like I said, I was pissed.  I thought that this diagnosis was thrown at me because the doctors were at a loss and had no other answers(which was partly true).  I didn't believe this was a real condition.  I thought it was condition that better served the drug companies than anyone else since there were not any concrete tests that could prove it really existed.  I refused taking medication for it.

Fast forward a couple more months.  I had been put on steroids a while back.  The idea was that if after taking them, I found great relief, red flags would go up.  Red flags sailed high and nearly blew of the flippin' poles.  The response/relief was immediate.  The problem was, getting me off them.  Now we were trying a very slow wean, one that would take 3 months.  My final dose came just before Thanksgiving.  My body was crashing.  Hard.  I couldn't move.  I had bilateral joint pain, all over.  Moving was so painful, I just laid there wondering what in the hell was happening to me.  Since I responded so well to the steroids initially, I was referred to a rhuematologist.  I made a call to him and he said, "this is rheumatoid arthritis.  We are going to have to get you on something else."  I had been taking the introductory dose of methotrexate.  When I came down off the steroids, it was clear that the introductory dose was not enough.  He would increase that, place me back on the steroids and come January, I would start bi-weekly injections.  It is August and I have yet to be off the steroids.

"I have RA." I would reluctantly tell nurses and docs when they would ask about the several meds I have been on.  Never really would mention the fibromyalsia.  I even asked my primary if we were dropping this.  He said no.  My rheumatologist agreed.  It stays. I still didn't believe.  And then, one day at my ob/gyn visit, I asked her, "do you believe in fibromyalsia?"  She looked at me and answered very honestly, "At first, everyone I encountered who had fibromyalsia always seemed to be these depressed, woe is me types.  There just wasn't enough information out there.  (She then went on to compare it to disorder that was highly publicised and seemingly over diagnosed). Now, we have more information and yes, I do believe it is a true condition."  She gave me a lot to think about, but I still wasn't convinced.  And then...

Here you go, Jill.  I met an old school friend out one night while she was in town.  And while, for the most part, I would prefer not to talk about all my ailments, Jill genuinely asked (I am not surprised, she has been so supportive) and wasn't satisfied with  my standard answer.  She asked if I had ever been tested for fibromyalsia.  When I told her I have and do have it she told me of a friend of hers who also has fibromyalsia and didn't talk about it either.  She encouraged me to reach out this person for support.  In that moment, I had no interest but was touched by Jill's interest and genuine concern.  For some days after, I kept replaying her words about not wanting to talk about it and understood that she was right.  I didn't want to talk about it.  I didn't want to give it life.  Because I still didn't believe it was real.

I gave into the new drug.  The one that would serve as a nerve blocker and address the fibromyalsia.  The disease I didn't have.  The disease I didn't want to believe or admit I had.  Because there seems to be such a stigma attached to it.  I felt it was a disease for the weak, mentally and emotionally unstable.  I thought that my doctors believed all this to be true of me.  I saw the adds.  Some of them are anti-depressants(not the one I am on).  I am not depressed.  I hurt all over and am exhausted, but damn it!  I am NOT depressed. Pissed!  Are there any anti-pissed drugs out there that claim to ease the symptoms of not being heard, understood or truly listened too?  Yeah. I thought so.  The few times I would admit that I had "it"  I could feel my jaw tighten and my fingers curl to a a pathetic fist.  I hated saying it.

I have Fibromyalsia.  I also have Rheumatoid Arthritis.  Both are invisible illnesses, for the most part.  Did  you read that?  I have Fibromyalsia.  Fibromyalsia is cringing when someone hugs you or when your children want to crawl up on your lap and every muscle in your body tightens in the painful anticipation. I take it anyway.  I can see them being more careful, despite my best efforts, it must be written all over my face.  It is the lingering pain, for minutes after, when someone pokes you to get your attention.  It is the overwhelming exhaustion (also a complication of RA) that hits you at several points in the day, sometimes all day or even, for days at a time.Fibromyalsia is the pain in my neck shoulders and several other muscles for no good reason at all.  Fibromyalsia is nerves that are constantly misfiring.  Fibromyalsia is pain.  Real, I believe in it, how am I ever going to get out of this bed and make it through the day, pain. 

It took a conversation with two friends, one a pharmacist, to make me reconsider past conversations and solutions with my doctors.  It also took a good look at what was really happening.  As I sat there in disbelief that I had to now rely on two pill boxes, I took a look at all the prescription bottles sprawled out before me.  I heard my best friends voice, "If they [the doctors] didn't think you were sick, you wouldn't be on this..."  Three times I went to pick up the phone to let my rheumatologist know I was ready to give in and accept the medication.  He assured me at my most recent visit that it was important acknowledge both diseases for effective treatment.  I want the best treatment I can get for the RA.  Even if it means admitting having something I haven't always respected or understood.

My name is Rachel and I have Fibromyalsia.  Believe it~or not!

Thursday, August 4, 2011

K.M.A. RA & Fibromyalgia!

If you have been following all along, you know that the original idea for this blog came out of some encouragement from a few friends and the unexpected shock when I caught a glimpse of myself in a mirror at a store.  My very large self.  I wanted to write out everything that I, as a fat person, felt.  I knew that I wasn't alone and wanted to be free of the emotional and mental weight.  I wanted to reach out to the many different shaped and sized out there and help free them from that isolated space we all lock ourselves into.

Never tell God your plans.  He will laugh terribly hard.  Prior to that fantastic plan I had, I was pretty sick.  And I have never fully recouped from that.  It has taken nearly two years for it to be discovered that I have fibromyalgia and rheumatoid arthritis.  Together.  I was knocked on my ass so hard I seriously didn't know what hit me.  Doctor's were scratching their heads as test after test came back "normal".  In the meantime, I was not functioning well at all. The only people who really knew what was going on were a select few.  How the docs finally came to the diagnosis is a long story.  It doesn't matter.  I have it and there are plans in place to deal with it.  I am finally on board and no longer in denial.  I do my research and actually search for information (in the past, I wouldn't.  Didn't think I had the right to without a proper diagnosis.).

My story is not over.  Yesterday I had a discussion with my rheumatologist about exercise and when I can expect to push harder.  He tells me that the weight loss is going to be tough because of the limitations the two diseases can cause, not to mention the steroids (I have a love-hate relationship with those damn things!).  In that moment, it occurred to me that I am NOT alone in this.  There has to be, just as when I was just fat, many out there in my situation.  I am back in the game.  My story is far from over. 

I plan on beating the living hell out of RA & fibromyalsia, just as they did to me.  Recently, someone told me I am a fighter.  I am, damn it.  In every other aspect of my life, I am a damn good fighter.  I've been given some tools to fight this and there is a lot that is left up to me.  Just as I NEVER called in sick to work and almost ALWAYS tried to go on and continue as though everything was normal when, really it wasn't, I will fight this with all I have.  I know there is nothing I can do to make it go away, but I can make it cower daily.

For those who have ever or do doubt my strength(largely myself!), this is who I am.  I am the mother of three and caregiver to many, old and young that ignored symptoms that shouldn't have been ignored.  Until the day I was taken into the hospital.  Even then, I fought being there.  I had things to do. I refused to give up commitments because I didn't want to let anyone down.  I refused to let on how bad I was feeling.  I am the wife who laid in bed after making it through the day with a jerking body because my kidney(s) would spasm so badly with infection.  When I would finally walk (crooked) into the doctor's office, they gave me shots of tramadol.  At least 9 times I went through this.  During one of these infections, I crawled through Darien Lake for an entire weekend, refusing a wheel chair.  I had fevers, pain, extreme fatigue.  When I say crawled, I am not exaggerating. Thank God for the stroller that supported me.  I made it through organizing parties down to the tiniest detail, holidays at our home and would immediately be down for 3 days or more after.  I NEVER called in sick.  I dragged myself, again, through an amusement park on feet so swollen they almost didn't fit into my shoes.  I refused to let my children down.  I get angry at the idea of having to go into the hospital because I don't want to be pinned down for anything minor.  My thought is, it better be pretty bad, or I am not going in.  Often I struggle with the idea of having to call something in.

And so now it occurs to me,I have to fight this weight thing like I fight these damn symptoms that should have had me laid out and resting.  It won't be easy.  But if I can push through an amusement park with a fever and kidney spasms, why can't I push through a walk up our road?  Eye if the tiger, baby.  All the doctor had to do was tell me it would be a challenge.  I am ready.

I am ready for proper nutrition and rest.  Proper exercise and healing. Every inch that is blasted, is an inch RA & fibro doesn't get to latch on to. There will be setbacks.  I have leaned that.  But they will be temporary.  Shortened lifespan.  Yep.  It will be the healthiest one if that's the way it has to be.  Kiss.My.Ass. RA & Fibromyalsia!