I Think I Broke My Kid

I think I am starting to see the consequences of my ways.  How I handle things.  And ultimately, how I am showing my kids to handle things.

I just got back from a conference with my son's teachers.  He is in fifth grade and classified as learning disabled.  It is three weeks in and I am already in for a meeting with his team.  Apparently, he is "checked out".  Already.  Overall, we haven't had to come in this early for a meeting since we made the choice, about three years ago, to allow him to be classified.  I thought everything was going relatively well, with some minor glitches.  If asked how things were going, even specifically, he would reply, "Great!".  Things are not great.  I got the call last week.

What I heard the teachers saying was that, my typically anxious kid, was showing no signs of anxiety.  At all.  And we were seeing the same at home.  Everything is just ducky.  At least that is what Ethan wants us all to think.  The reality is, he is overwhelmed and won't ask for help.

I think as parents, we try to shield our children from some of life's unpleasantries in an effort to preserve and prolong their blissful childhood.  I do this.  All. The. Time.

During the conference, we got to a point where I was forced to give a more detailed explanation of what has been happening in the house and some changes that are about to happen.  "That is a lot to have going on.  That has to be stressful."  I reply, "I'm fine."  I hear myself and I realize that is just what Ethan has been saying.  And he doesn't think he needs help either...and God forbid he asks.  What have I done?

I have set him up for failure.  I often refuse to ask for help, because in my eyes, it means I have failed.  I am sure the kids are aware of this.  My husband gets upset when he finds I have done or attempted to do something maybe I shouldn't have without help.  I snap back that I don't need help.  I know it's because I am secretly angry about the changes going on inside of me and want to prove that I am stronger than my moronic immune system, RA and fibromyalgia.  I may have used up all the hot water in the shower that day because it is the only place I allow myself to cry and acknowledge how much I hurt, how exhausted I am and how scared I am about the future and what life will be like and what people must think of me.  But ask me how I am..."Fine/Good/Great."  Unless I am comfortable enough, I won't let my guard down. I don't say I am overwhelmed.  I never wanted to be that person that someone regretted asking, "How have you been?"

My kids aren't stupid. They know I am lying through my teeth to other people.  They know I say I am fine and refuse help altogether.

The teachers were kind in offering that perhaps I give the kids a bit more information so that the kids don't form their own conclusions.  What I heard...my kids don't trust me to be honest with them I have failed them.  I have been so concerned with what others may think of me if I am honest or ask for help.  It is such a painful thing for me to admit and now my kids are doing the same.

I need to find a balance where I don't loose too much pride or comfort.  I need to show my children that it is OK to ask for help and that it isn't always the best thing to say you are doing great, especially when you are not.  But I don't want to encourage whining or needless excuses either.  I want them to be strong, independent and productive individuals.  I have to wonder if it is too late.  If I have already unknowingly instilled bad habits in them?  How do I fix this?

What is encouraging is that it is early in the school year and we are catching this.  Maybe this new "showing" of anxiety is partially due to maturity.  Maybe it is not all my fault.  Maybe my beautiful boy is teaching me a lesson~

Maybe, my boy just broke me...

In Sickness and in Health...

I wish I was sitting here writing about how great I am doing with my 3 minutes a day of activity.  You have no idea how much I wish that were the case.  I am still putting in the effort, but if I said it made me feel great, I would be flat. out. lying.

I feel like crap.  Period.  Eating is an issue.  Walking is an issue.  Sitting here is an issue.  Blood work comes back and they want to prescribe something else.  They find out I have not been taking one of my meds because it makes me feel even worse.  "How long have you not been taking it"  I tell them a couple months.  It is metformin. It's more preventative (because of steroids and because I have  PCOS) and even my levels were still acceptable.  I tell them that I have not been taking it because I am already having GI issues and that med can make it worse. "We need to see you about this."

Truth is, I am so sick of being "seen".  Every time I go, there is something else.  I am tired of it.  I am tired of drugs and poking and tests.  I am tired of explaining.  There are 3 more specialists I am supposed to consult with.  I don't want to.  For what?  More tests?  More wrongs.  More meds.  More false hope?

I just want to go to the store and run errands that most people complain about without slowing to a crawl 10 minutes into the trip.  I want to not dread the snow melting because seeing all the outside clean-up that I can't really do right now, is depressing.  I want to plan parties and be completely consumed with every detail to perfection.  I want to walk in our woods and keep up with my children.  I want to easily run up and down the stairs like I used to. I don't want to be dependant on anyone.  I never was before. Damn it.  I WANT MY LIFE BACK!!!

Today would not be a good day to complain to me about anything stupid.  Anything that can be changed by a single or even multiple actions.  Because it can be changed.  This sucks.  I have been compliant and patient and as positive as I can be.  Today is a rough day.  I will never even tell my husband how I am feeling because he has been so amazing, supportive, loving and wonderful.  I hate that this is the wife he has.

My last job, I had a wonderful boss.  His name was Tom.  He was a wonderful man and husband. Tom's wife had RA (how ironic).  She was just as wonderful.  In many ways I never realized until the past couple of years, he was the kind of husband as Jim is to me.  Patient, doting, kind, loyal & loving.  Tom would speak to me often of his wife's illness.  I didn't connect all of this until about a year or so ago.  I had the privilege of seeing the other side of RA.  It wasn't that he complained, but he was frustrated with every setback, illness, treatment, hospitalization and even need.  Ann eventually became very dependent on Tom and he accepted that.  However, he would reveal sometimes that, even though he knew she could do nothing about it, it was hard on him.  He was not at all resentful.  He was perfectly wonderful.  But it was a difficult life.  At the time, I had no idea, but it was a window in to my future.  Even though I know Jim will walk through this with me without a single complaint, it is not what I wanted for him.  For us.  I know the vows.  I don't care,  He deserves better.  I love him so much and am so thankful for all the things he does to make our lives the best they can be and better.  I don't want it to be this hard.

And it is hard.  I could sit here and write about exactly what is so hard, but honestly, my hands don't have the strength to make it through. I am dead serious.  Just know that I have to work very hard to get some of the most mundane tasks completed. Try to count every joint in your body.  75% of mine are angry today.  Oh, and lets not forget the brain sending false messages to my nerves telling me I hurt...for no reason.  So count your muscles too.  And then there are the latest issues (GI & female).  Put all that together.  Overwhelmed is an understatement.  Don't judge.  This sucks.

The things I want seem so simple. And trust me, I am always more than aware that my issues are a drop in the bucket compared to many. But today is hard.  Today I am having a bit of a pity party.  But honestly, at some point, wouldn't anybody?  I will still smile and make sure any trace of tears are long gone before my beautiful babies come through that door. I have no choice other than to suck it up.  I had the blessing to see what the other side or RA looks like and the tole it can take on a loved one.  Chin up.

Misunderstood

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 http://rawarrior.com/. "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. 

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 myself...to 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!

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.

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. 

In My Daughter's Eyes

In the past month, I have been named someone's hero.  Twice.  I came across the first nomination while looking for my daughter's lost homework assignment.  It was an interview my she did with my husband.  She asked who his hero was.  It was me.  Then, last night Emily announced she needed to type out and print an essay that was due today.  When it was finished, I read it.  Her assignment was to write about her hero.  Again, it was me.  Wow.

I bake a mean cut-out cookie and take pride in how they are decorated.  I am Lazy Pirogi & Jambalaya Queen.  I am the Stain Nazi, I can get most any stain out.  I am organized and very particular.  I love the look of how neatly folded towels look.  I am probably the best sheet folder out there, second to my mother who taught me.  I preach that there is a place for everything and even label...most everything!  If it is broke, chances are, I can fix it.  Doesn't matter what it is, I will at least try.  I love to decorate.  I have been given the title, Craigslist Ninja!  If I need it, I will find it.  And for a killer price.

My floors aren't as clean as they should be and there is certainly enough dust begging to be...well, dusted.  The dish rack often has dishes in it and my counters are cluttered more often than not.  There are baskets of laundry, all at different phases, all over.  Beds are not made. My sun room, has become a collecting area, again.  Our flower beds need weeding.  And this year, we will not have to worry about getting the Christmas lights up.  Because for the first time ever last year, they never came down.  Dinner isn't always ready on time...or at all.  My room, is a complete disaster area.

None of this matters.  None.  Not at all.  Because, I read what my husband wrote.  I am his hero because 'she has rheumatoid arthritis and fibromyalsia and though most days it is painful for her to just get out of bed, she does it and not only does she do her best to do what she can, but most days she accomplishes more than I do and she does it all with a happy attitude (most of the time).'  And in my daughter's eyes(wrote that line before I remembered the song), all that mattered was that I want to help people and make them happy.  The fav for me was she knew that I believe family is important as well as being a good friend. 

I have a lot to live up to.  They have set the bar pretty high and now that I have achieved this highest of honors, I fear that there will be disappointment.  At the same time, there is this sigh of relief.  I cannot not even begin to express the fear I have of not being a good enough mother.  And with the challenges handed to us/me in the past couple of years, that fear had surfaced once again.  But it's OK!  I am doing it.  Not perfectly...but my daughter is happy with me.  I am her Hero...

There is no amount  of counseling that could bring me to where I am right now.  This was concrete, black and white proof that I shouldn't give into those great fears I have.  She is my daughter and one of the three greatest gifts God has ever blessed me with.  Every night I go into her bedroom and kiss her good night and nuzzle her.  I tell her I love her and she sighs back and gives me that sleepy smile.  Sometimes we chat for a bit.  Sometimes I get into bed, can be nearly asleep and realise I never kissed them.  It is no exaggeration, there are times when I can't walk and use the cane to get to them.  Sleeping or not, I believe they know when I am there.  This is what a good mother does.

My children don't care that the clothes are all over or the counters are cluttered.  They know I want it differently.  But so far, one of them has shown me that none of that truly matters.  I am so proud. 

It just occured to me.  One of my favorite artists is Martina McBride.  Years ago, she had a song out called, In My Daughter's Eyes.  I would cry every time I heard it and wish that it could be like that for me. All the while doubting it would be.  I was so terrified of failing, especially with my daughter.

In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes

I think I will end this post here.  I wish I had recalled this sooner.  I couldn't have described this any better.  I have been rescued.  I have not failed.

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!  Alright..so 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 laugh...as 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!

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 up...it'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.

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!

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!

I Have This Nagging Feeling...

Think about the last injury you had. How, in those first few moments of confusion, shock and then pain, you are truly unable to communicate. If someone is there with you and asking, "are you alright?", you are almost unable to answer. In your mind, you are trying to absorb what has just happened, where the pain is and how bad you are hurt. You can't answer. The extra voices are almost agitating, adding to the chaos in your mind.

That has been what it is like for me. Several times a day, for a very long time now. Except now, all I know is the agitation and the realization of the pain, sometimes all over. And it is hard to concentrate on conversations and other things that are going on all around. I can no longer multi-task. I can watch the children and nothing else, even the television on in the background can be too much. Talking on the phone, not so much. There just doesn't seem to be enough distraction. I start to feel the aches and then I lose concentration. Then there's this mental scramble to recall what has just been said so I can respond appropriately and I just get frustrated. I can't explain how often I find myself becoming agitated and fidgety before I actually tune into my body and understand that I am hurting again. There is that expression, "I have this nagging feeling..." That is exactly what it is. Something is wrong, something hurts and I can no longer ignore it. Damn it!

Like most situations in life, I know I am not the only one. But lately, I just want to scream. I know several others that suffer or have suffered the same or similar symptoms to mine for other various diseases. Thankfully, they have been properly diagnosed and their medicines have had a chance to work and/or level out and they are functioning as "normal" as can be expected. That is all I want. I am not asking for a cure. Just for the pain and fatigue to stop, for a significant period of time. I am completely willing to pay my dues. I just need a break.

I know that the doctors are working hard and I am closer to relief (Please, I hope!) than I was a month ago. I know that I have to be patient. I know. I know. I know. But I also know that I feel inadequate as a mommy and wife. Each of my children have expressed their knowledge that "mommy is sick". What child should EVER have to worry about such things? I am ashamed that I couldn't hide it better. I can tell they are being so careful when they climb up on my lap for hugs. I recently found out that my oldest was worried that I was going to "leave...go to Heaven because the doctors don't know what's wrong" and my littlest one came into our bed the other night, covered me up and gently rubbed my arm. When I was telling my husband how cute it was, the little one overheard and said, "that's because mommy doesn't feel good."

As a general rule, we don't really discuss the situation around the kids. Honestly, there really is very little talk at all, because we had nothing to talk about. It has been a slow process of trying to figure everything out. They know that I am at the doctors, a lot. But they also know that I am much slower and tired. I am not really sure how we could have shielded them better. And my situation is not dire, by any means. In time it will be under control. I am not dying. Maybe we didn't share with them enough. Maybe going to all these doctors appointments should have been briefly discussed. I guess, as an adult, I know that my imagination can get the best of me too. Alright, so I just figured something out in this moment while writing this post. I will talk to the kids. Reassure them. Sigh...

Another month...another pill...another try at patience.