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!
 

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. 

One Size Does Not Fit All

While on the phone with the pharmacy representative in charge of filling my prescription for Humira, she asked me one of the standard questions they always ask.  "On a scale of 0 to 10, 0 being none at all and 10 being the worst, how would you rate your pain?".  I freaking hate this question.  I never know how to answer.  I hurt all the time.  So zero is not an option.  Five seems like I am just not happy and anything higher, sounds like I am complaining or a hypochondriac.  I usually say 6 and hope it's just a formality because I am not sure what they or we are supposed to base it on. My pain scale would be radically different.  Questions, not numbers.

What is the base for your pain?
  As a general rule, there is a burning that is present or an ache, somewhere, almost always. That is what "1" would be.  The base, if you will.

What is your best time?
I would need someone with computer animation talent and a stopwatch to help with the next.  How slow am I moving or getting in and out of a chair?

Do you need a GPS with Traffic Alert to navigate your own home?
Can I maneuver between a child and a boot on the floor with ease (nope)?  Can you pass me by in the hallway without setting me off balance because I am so stiff with pain (again, nope)?

How are you carrying on conversations?
I would want to be asked how often I am silent.  That is a HUGE indicator.  Sometimes, the pain is so bad, I can no longer distract myself from it.  I can sit in a room full of people I know very well and have nothing to say at all.  That happened this Christmas.  I sat at the table and the pain coursing through my body was so intense, it was all I could do not to put my head on the table, right there, and cry.  I felt like an awful hostess. I thought for sure that they could see that I wasn't listening to them at all. 

Are you a glutton for punishment?
Yes.  I would rather stand (OK, lean) at the kitchen sink doing dishes and then move on to another task nobody in their right mind would do with the amount of pain I am feeling than sit and "relax".  Because, contrary to what you may think, for me, sitting in pain is worse than moving in it.  Notice I said, in it and not through it.  Through it would indicate that the pain passes.  It has not.  I need to be distracted.  My feet are bad.  Real bad.  But the counter pressure from standing on them is better than the stabbing, throbbing, indescribable pain when I finally sit.

Where are your emotions?
All over the freaking place.  I don't know what to say.  To live with this type of pain every moment, every day wears on you.  It is exhausting.  In. Every. Sense. Of. The. Word.  To try and maintain a "normal" lifestyle is...exhausting.  To pretend that the little things don't get to you; especially the pieces of yourself you feel are being chipped away...every day.

Can you complete a sentence...with all the words?
Nope.  Too much pain on the brain.  Processing is a problem. 

How is your tolerance for noise?
This always depends on the kind of day I have had.  If there has been opportunity to rest (ha-ha-ha-ha), I can take it.  If not and it has been a rough day, fogettaboutit!  Sometimes, I startle easily with the most common noises in a house with 3 children and 2 dogs.  The startle makes me jump, the jump makes me hurt, the hurt makes me cranky. 

In all honesty, unless you have a doctor who is willing to really listen and get to know you, there is no perfect pain scale.  Everyone is different and carries a different pain tolerance and response.  I feel that finding that balance between our trust for our doctors and the honesty with them as well as ourselves is key.  I want to tell my doctor how I am really feeling.  But I have to trust that they know I am not exaggerating.  The midwife that delivered my children knew this. She knew enough to get in my face and tell me I wasn't earning any medals by putting myself through more than was necessary.  This was during labor, a gall bladder attack AND a fourth degree tear!  All happening at the same time!  She was good awesome.  Why can't she be my doc for everything?

With everything that I have been through in the past couple of years, I sometimes think that maybe I am just a wimp.  Maybe I have a little pain and I just am handling it poorly.  And then, just as that thought crosses my mind, my body screams it's painful reminders.  No.  This isn't little, this is big...and real.  Real Bad Pain.  There is no scale for this.  There is no "One Size Fits All"

***This post is part of a blog carnival.  Please check out this link for more stories, thoughts and ideas about Pain Scales.  
http://rawarrior.com/crossing-the-language-barrier-of-pain-scales-rheum-blog-carnival/ .

Kelly at Rheumatoid Arthritis Warrior has done a wonderful job of pulling these blogs together for a wonderful and informative presentation.  We all appreciate her dedication.  Please stop by!

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.

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 day...in our shoes.

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.