Monday, April 25, 2011

I AM ANGRY! And that's OK! (Rantings of an RA patient)

I AM ANGRY!!!!!!  I want to use my loud voice to shout it to the roof tops.  I want to scream, I want to yell, I want to kick and break things.  I want to throw a tantrum.  But then, I look at the innocent eyes of my children and think how I have worked so hard to show by example that when we get angry we talk about it, we communicate, we discuss our feelings-we do NOT throw temper tantrums and fits.  And yet, that is exactly how I feel.

I have read somewhere that when you are ill, chronically ill as I have been "labeled," you go through the stages of the grieving process, sometimes multiple times a day:  denial/isolation, anger, bargaining, depression, and acceptance.  I have learned that they do not have to follow in that order, nor do they all have to happen at all.  Well, I am stuck.  I am stuck in ANGER and I am uncertain how to get out.  Even with my bright side and sunny disposition, I have found that I have a deep rooted anger brewing inside me.  I believe this is occurring for many reasons.  Reason 1:  As I was growing up, I learned to "cope" with my anger issues by utilizing physical outlets other than punching walls and breaking my toys.  I started to work out, pump iron, run.  What a great stress/anxiety reliever.  What a great way to let out that physical build up.  My rheumatoid arthritis has put a stop to that.  It is a rarity that I am able to use weights and the treadmill, and even when I do, I am not pounding my work outs like I use to-the kind that would beat the anger right out of me!  Stressed?  HA!!  One of my largest resources has been taken from me and I am angry.  And that is okay.  It's OK to be angry.  Sunny Solution:  WRITE, WRITE, WRITE!  Voice it, talk it out!  Take smaller, gentler walks...and maybe a small glass of wine or two! :)

My husband and I discussed that maybe I have not accepted my illness completely.  Nah, I have accepted it.  How could I not?  It stares me in the face daily, with not so gentle reminders!  Then he lovingly and gently suggested that I haven't exactly accepted the changes and adaptations that I have to make in my life now...WHAT?!?!  Ok, seriously, I wasn't mad.  I applaud him for his bravery in telling me the truth (gutsy guy).  However truthful that is, I can counter that with this:  HOW DOES ONE ACCEPT THEIR LIMITATIONS AND THE CHANGES IN THEIR LIFE THAT THEY HAVE TO MAKE, WHEN THE REST OF THE WORLD IS NOT ACCEPTING THEM OR SEEING THEM AS NECESSARY????  Ok, all caps off...just had to get that angry statement off my chest.  I am in constant battle with accepting the reality of my new life, because life has not accepted it yet.  Case in point-- my job.  How can I accept my limitations, accept the changes and adaptations in my life when my job has the same expectations it has always had of me?  I am a teacher.  I was always a great teacher, a job I was good at and proud of.  As my health has disintegrated, I have watched my career and my ability to barely keep up with my job equally disintegrate.  And I am the one not accepting my new life?  No one at work is saying, "Sue, you look awful, let me take your 29 5th graders from you for a while so you can take a break"  or "You have been painfully limping around all day, let me take your kids back and forth from classes and up and down the stairs" or "Sue, you seem so exhausted and I know the kids are really out of sorts, let me come in and help out".  That is not how it is at all.  Oh's more expectations, more paperwork, more "your kids weren't quiet in the hallway" (really?  You should see them in my room when I am too tired to do anything about it) one is adapting to ME, so how do I adapt to ME?  (Yes, I have been open with my illness and how I feel.)  And work isn't the only place I see it--people are constantly "curing" me with their suggestions, playing down the way I feel, making me feel guilty for not being able to do what I am no longer able to do.  Reason #2 for my anger:  I AM NOT THE ONE IN DENIAL...EVERYONE ELSE SEEMS TO BE!  I guess that's ok, too.  How could they understand, right?  It's not like I am dying.  I am not terminal.  Sunny Solution:  Continue to voice what RA is all about.  Dispel the myths about Rheumatoid Arthritis.  Be more vocal about an illness that most people don't understand.  Also, perhaps it's time we consider the reality that maybe it is time to make the hard decision that we've been avoiding, "to work or not to work, that is the question."

Reason #3 for my anger:  not that I would wish this on anyone, but, I am angry that this happened to ME/us.  We are not a family that can afford to be on one salary.  It's selfish to think like this, but come on.  How many of you haven't thought to yourself, why me??  I mean, there are many people in this world, even close to me, that could afford to be on one salary living in luxury, and I am the one putting the financial strain on my family??  Reason #3:  Guilt.  I have guilt, this immense guilt, that I can not get rid of.  I see what this is doing to my family, especially my husband, and I can not help but feel guilty.  What unselfish, loving person wouldn't feel guilty.  I am angry because I can't get over the guilt.  I am constantly faced with guilt:  "Mommy isn't feeling up to playing right now"  "Mommy can't walk guys, sorry, go without me" "Mommy is too tired" "Mommy is sick" "We had to cancel our trip to Disney, guys, because we didn't think mommy would be able to do it" (that was BEFORE my diagnosis)  "Sorry son, we don't have money for college for you, we have a very uncertain future"-ouch!  Then, the guilt of watching my poor husband unravel because this is getting so hard for all of us, especially him.  Our support system consists, uh, my husband, and therefore, everything is put on his shoulders.  Reason #3:  I feel guilty.  I guess it's OK to feel guilty, too.  Sunny Solution:  I don't have an answer for this one.  My husband and I discussed that perhaps I am asking the Lord the wrong question.  Instead of asking Him, "why?" (and getting no response), maybe I should be asking Him, "How?  How, Lord?"  Another thing I can do, I suppose, is shield myself from other people who make me feel guilty over things that are not within my control. 

CONTROL.  How can I feel guilty over something in which I have no control?  Right?  It is not my fault.  It is not my body's why am I blaming myself?  Solution:  Accept that it is NOT my fault and that there is no one and nothing to blame.  It just is...

Reason #4:  Lack of compassion from others.  Seriously, is it just me or is it TOO painful and TOO much work and effort to pass along well wishes??  To send a "thinking of you" message?  To say, "hope you are doing well today"?  In this day and age of instant connections through advanced technologies, it requires about a split second to IM someone on facebook and say, "hey, hope you are well!"  I have done it.  If I know some one's been down and out, sick, having issues, I ACKNOWLEDGE their pain, illness, THEM by dropping them notes telling them I miss them, I am thinking of them, I hope they are well...  What has happened to society?  Have we been given the opportunity, the advantage if you will, to be so instantly in touch with people, that we have become so out of touch with people??  I can get a text message for the most insignificant reason, but to be invisible to others while I have an invisible illness is almost too much!  To be honest, it's not just other people, it's me too!  I am finding that I lack compassion for myself.  I treat myself in ways that I would NEVER treat someone else.  I get angry with myself for not being able to do things that I once was able to do.  I have expectations of myself that are way too high.  I push myself to limits that knock me back down to the couch for days.  If it were someone else, I would dote on them and do things for them to make their life easier.  I would be kinder to them, gentler with their condition, but me?  No way...I haven't even developed compassion for myself.  Sunny Solution:  Be kinder to myself.  Show myself MORE compassion, as if I were someone else.  Change my expectations of others around me, and work harder at building a support system- if not for me, then for my husband and children.  Continue to show others the kindness I would enjoy in return.

Now that I have SOME of that off my chest, I am feeling a little better.  I can't say my anger is gone, but writing it out, reasoning it out, and coming up with my own solutions helps take the edge off, like a Vicodin for pain (don't get me started on reasons I am angry with doctor!  LOL) 

Perhaps I will be able to move into the next stage of grief, whichever stage that may be (although, I can't admit that I have ever tried to bargain...)  I am hoping to move to acceptance and eventually to peace.  Peace is my ultimate goal, peace is the one thing I haven't felt on this roller coaster in almost 3 years.  Baby steps.  One thing at a time...working through it angry step at a time! :)

Hoping you find your Sunny solutions, too!  Many blessings!

Wednesday, April 20, 2011

R.A....More or Less...

This illness, this illness that has become a part of me and my life, gives what it gives when it wants to give it.  And you get nothing more and nothing less.  Rheumatoid Arthritis is so sporadic, so impulsive, that one can't predict how they will feel one minute to the next, let alone one day to the next.  Nothing more and nothing less.  This illness is all about more and less. 

More doctor visits.  More sick days.  More stress.  More medications to try.  More medications to stop.  More medications to research and wonder about.  More pain.  More weight on my body.  More weight to lose.  More doctor visits.  More blood drawn.  More decisions to make.  More prayer.  More people to disappoint.  More invitations to turn down.  More events to miss.  More pain.  More advice from others.  More fears of the future.  More exhaustion.  More tears.  More uncertainty about our future.   More reliance on the Lord.  More prayer.  More faith. More of a relationship with God!  

And the less...

Less independence.  Less money.  Less reliability.  Less patience.  Less freedom.  Less energy for work, my children and my husband.  Less time.  Less ability to focus on anything.  Less support from others.  Less understanding.  Less working out.  Less smiles.  Less cleaning.  Less of a friend, a sister, and a teacher.  Less pain-free days.  Less movement.  Less hope for getting better.  Less walking.  Less of a wife.  Less of a mom.  Less sweating the small stuff.  Less concern over my vanity.  Less control.  Less predictability.  Less of me. 

This is my life.  This is the new me.  This is Rheumatoid Arthritis...more or less!

Many blessings for Sunny days ahead!!

Saturday, April 16, 2011

Voice of R.A.

What does Rheumatoid Arthritis look like?  If you Google images of it, the pictures are frightening, down right horrifying.  However for many of us, R.A. is invisible.  The outward signs of R.A. are still in their early stages for me and not so easy for someone to see with their eyes, but the battle is within and the damage is being done.  If you took a picture of me, I would not be the best "poster child" for Rheumatoid Arthritis.  One would look at me and think there was nothing wrong with me based on my outward appearance.  So, what kind of impact can I have for myself and others with Rheumatoid Arthritis, if I "don't look sick?"

I can be the VOICE of R.A.!!!  Rheumatoid Arthritis couldn't have picked a better person to attack. 

To put it nicely, I have a big mouth.  My big mouth has been known to get me in trouble, as a matter of fact.  I have been known to have to mumble the prayer about the Lord placing one arm around my shoulder and the other over my mouth one too many times.  Though, it is not because I lack social skills or anything like that.  What I lack is the inability to sit back and watch an injustice being done.  What I lack is the ability to do nothing, when I know I have something very powerful working for me- my voice!  When action needs to be taken, I am there to do it, whether people like what I haved to say or not!

Oh, R.A., erode my bones, take my joints...but with my voice, you don't stand a fighting chance.  What can I do with my voice?  Well, what am I doing right now?  I can write about my experience with Rheumatoid Arthritis.  I can become more vocal for those who are not so willing to be as vocal about it.  I can become an advocate, being vocal with lawmakers about arthritis, cures, medications, and disability.  I can help- I can help others just like me.  I can help others with a RA, chronic illness, or anyone going through this grieving process like I am. 

I can become the VOICE OF R.A.!  That is MY R.A. super power!!  What are you going to do with your R.A.??

Shouting to the Sunny hilltops!!  :)

Sunday, April 10, 2011

What is Your R.A. Super Power?

This week at school, we had an assembly for the students.  Corbin's Exotic Pets came and showed us some incredibly beautiful creatures, some of which I have never heard of.  As an extension to this, I found a great National Geographic Explorers (for kids) magazine article about "weird and wonderful" animals.  It talked all about these "strange" creatures and their incredible adaptations they had, as well as what the adaptation was used for.  For example, we learned about the Waxy Monkey Tree Frog.  The Waxy Monkey Tree Frog has actual wax glands, to secrete wax.  This allows it to be out in the hot sunlight all day and not "croak!"  (I had to do that)  Anyway, when introducing adaptations, I made the analogy that they were like the animal's "super power." The wax monkey tree frog's super power?  Wax Glands-oh yeah!  What does the super power do for it?  Protects them from the environment (the sun).

If you think about it, Rheumatoid Arthritis has super powers, too.  The amazing thing is, the super powers are different for everyone.  Take this weekend for example.  Saturday was hot and sunny, and I had to endure sitting for almost 4 hours one-way to drive my son to his college visit.  Then, I sat for another hour listening to a general overview/introduction about the college.  Afterwards, my body was needed to walk all around campus for almost 2 hours.  Flat walking?  No!  We walked up and down stairs, ramps, and hills, of course!  My RA super power of the day?  It LET me.  For some reason it allowed me to do it.  I had some swelling in my ankles and feet, and my knees ached, but I was ok.  What a wonderful day!!

Today, was hot and sunny, with a slight wind.  We decided it was a lovely to day to go up to our seasonal campsite and uncover the camper and open it up.  Camping season is just 2 weeks away!!  I did some light lifting and light cleaning of the camper, to put things back in cabinets and drawers.  However, today's RA super powers were very different.  My RA's super powers?  Inflammation and pain!

How is that a super power?  I take it as a warning sign.  I take it as RA's way of saying, "Sue, I let yesterday go.  You overdid it, but with some rest, I figured you would recover and not do it again.  But, today showed me you were pushing me a little too far!"  (Do YOU ever imagine your RA talking to you, like I do?  I hope so!!  Or else, I am losing it!!)  Shortly after doing some light lifting in the garden at the campground, ok, heavy lifting-who am I kidding- my fingers got very inflammed and stiff and it forced me to stop.  It was my body's way of telling me I did too much.  I switched activities and emptied plastic tubs of dishes and silverware, etc. into the cabinets, and all of the bending at the knees (PROPER LIFTING FORM) caused my knees to swell and stiffen. 

Ok, RA, I hear ya, I hear ya.  Hit me with a frying pan already, would ya?  My husband decided it would be best to send me out for lunch.  Feeling quite useless and shot down, I sulked and headed out.  See, I LOVED working in the garden at our site.  I love cleaning, believe it or not.  I especially like making sure my kitchen is nice and organized.  I had so much on my To-Do List today, but RA had other plans for me.  Alas, I set out for lunch and a quick trip to the grocery store, and came back with swollen ankles, feet and sausage toes.  RA's super power this time?  A very big warning that I should have taken seriously all day.  All day, my rheumatoid arthritis was telling me that I had already gone too far.  All day, I ignored it and kept on doing what I wanted to do. 

Pride goeth before the fall.

During the one hour drive home, I slept.  For the next three hours, I slept on the couch, unable to budge.  Do I recall a Mac Truck and I having a collision?  Oh yeah...pride.  I was unable to take it easy, watching my husband work so hard, and my children run around playing.  Pride-and a lot of restlessness.  This illness has not harnessed my restlessness, which seems to be a downfall of mine.  Therefore, I lose my balance; the balance between what I am capable of doing at any given moment ('cause that is how RA rolls), what my body is willing to let me do and what I WANT and NEED to do!!  Anyone else have a hard time with this balance? 

I was cursing RA at the campground, feeling sorry for myself.  And after I woke up from my nap, it occurred to me, that I was the one being difficult, not my RA.  I was the one living OUT OF HARMONY with my illness and pushed myself to where I am this moment after a day like today.  And then I thought of the weird and wonderful creatures I introduced to the students and their adaptations/super powers.  What is the purpose of my RA super powers?  What does my RA protect me from?  MYSELF!

What's your RA Super Power?

Keeping it real...Keeping it SUNNY!  Many blessings!

Tuesday, April 5, 2011

Support Systems-or- on the Shoulders of My Husband

I was always an independent person my whole life.  I valued depending on no one, being strong enough for myself, not relying on others.  I always danced to the beat of a different drum!  This independence meant keeping people, especially friends, at arms length.  Don't get me wrong.  I wasn't anti-social or anything.  On the contrary, I was very social, hanging out with many people.  But, I am not sure if I did it long enough or with enough depth to let anyone "in" to see and know the real me.  What was I protecting myself from?  No matter, I was strong and independent and didn't need anyone anyway, right?

Many years later, with an added Autoimmune disease, not much has changed.  I am approaching 40, and finding myself without my group of "girlfriends."  Today I find I might be even worse-the way I keep people at arms length.  Being chronically ill is hard, but being misunderstood, judged, and criticized can be even harder, right?  Good thing I am independent, strong and in need of NO ONE!! ... 

"Honey, can you cut my meat please after you cut the kids' meat?  Oh, kids can you go up and get my ______, mommy can't walk today?!  I'm sorry baby, you have to button your own shirt, mommy's fingers are very swollen, stiff, and painful, or go ask daddy.  Hon, can I have a chair to sit in while I dry my hair?  I can't stand anymore." I was saying...

My "friends" from my past have all but faded, and here I am with RA, looking for someone to turn to-looking for a strong support system.  My husband, thankfully, has been there 100%.  He is my best friend.  My small children are becoming increasingly supportive, to the best at which they can understand my illness.  For them, I am eternally grateful.  But, my lifetime of arms length and independence has come back to my having only my husband's shoulders to lean on.  Don't get me wrong, my husband has proven to have shoulders of incredible size and strength.  Apparently it can carry a burden beyond belief.  But what about him, who's shoulder does he have to lean on?  How much longer can he hold on?  Who is holding him up?  I am so thankful that he is strong in his FAITH, because I believe there are days when God is carrying us BOTH on His shoulders! 

RA has opened my eyes to how much people do rely on one another, how important friendships are, and how having a support system is so important to getting through a chronic illness.  There are a million things in this world I can look upon in a positive manner and say, "for that, I do not regret."  I believe that things happen for a reason, and no matter what mistakes you have made in life, you can pick yourself back up, learn from them, and move on.  However, this is something in my life that I am starting to regret, and not just for me, but for the support of my family.  I am so thankful we have each other, our love and never ending, common Faith!
Maybe when the Lord believes we are ready for a deeper, more supportive group of people in our lives to help us through, He will provide them to us!!  Until then, I lean on the love of my husband and comfort of the Lord!

Do you know of anyone in need?  Anyone who might be in need of support?

Support one another--Reach out to one another--and keep the Sunny Side Up!!  Many Blessings!! :)

Friday, April 1, 2011

My deep Dark Side...yeah, I do have one...

I know that I have been preaching about looking on the bright side and keeping the sunny side up.  But, there is a dark side to me that I feel the need to reveal- a dark side I struggle with now more then ever.  Maybe you can relate to this, maybe not, but my dark side is my insecurity with the way that I look.  There, I said it!
On one hand, I can rationalize that I've been much less active, I have had my RA symptoms for almost 3 years now-and not under control yet, might I add.  I can also tell you that the medications I am taking are not helping with my weight, especially the prednisone.  I can say, "hey, it's ok, you've been through a lot.  You are a still beautiful.  Your husband loves you and desires you.  It's ok."  I can rationalize it until I am blue in the face, and after all the rationalizing, pep talking and reassurances, I still catch glimpses of myself in the mirror or in a picture and think, "who is that person staring back at me?"  Have you had those moments?

Sometimes I wish we lived in a world in which we all wore blinders.  I often wonder what would happen if I could no longer see, God forbid.  I certainly wouldn't be able to compare myself to anyone else, now would I?  Would it even matter?  Oh yes, I would still be able to hear what people say...darn.  Do we live in a society that is so shallow that the stress of my illness is compounded by the anxiety of my vanity? 

Vanity:  noun
1.  excessive pride in one's appearance, qualities, abilities, achievements, etc.; character or quality of being vain; conceit
2.  lack of real value; hollowness; worthlessness:
3.  something worthless, trivial, or pointless

Pride:  noun

1.  a high or inordinate opinion of one's own dignity, importance, merit, or superiority, whether as cherished in the mind or as displayed in bearing, conduct, etc.
2.  a becoming or dignified sense of what is due to oneself or one's position or character; self-respect; self-esteem

There is a fine between vanity and pride, and apparently I skate it.  See, I've been on both sides of the fence.  I have been the overweight person.  The person who put on a few extra pounds in college and had to burn them off.  Or the person who gained a little too much weight with her pregnancy, and had to start working out a little harder to get rid of it.  I have had people make comments about my weight (ie:  you have such a pretty face- fatso- why can't you be like my friend's girlfriends?).  I have been made to feel like less of a person as a result of it.
I have also been the the fit person, in the best shape of my life (until my illness of course).  I still have had people make comments about my weight (ie:  wow, you look so much better- I can't believe how much weight you've lost- what have you been doing to yourself- if you lose anymore weight you will disappear).  I can tell you that I still felt like less of a person as a result of it.  Some of you might be thinking-oh yeah, come on...really?  Yes, really!  I resented the comments.  I resented the focus on my body and outer looks.  I resented the feeling that that is all there was to me. 
I will openly reveal in my blog that I have put on weight since this journey began 3 years ago.  The "bulk" of it (no pun intended) seemed to have occurred after my Prednisone, Methotrexate, Humira mixture, which has been rather recent.  Imagine how I must be feeling now, after people made such an emphasis on how "great" I looked, how much better I was looking, the "wows" I got.  I don't get "wows" now, unless it's behind my back, I am sure!!  :)  Point is, why does someone's physical features have to the thing people talk about and focus on?  Whether I am 30 lbs. lighter or heavier, doesn't change the fact that I have a phenomenal mind, the largest humanitarian heart, and a kind and loving spirit.  So why, as a whole, do must people struggle to see beyond the shell?  If my RA progresses and my body becomes deformed, will these same people no longer find even an ounce of beauty left in me?
This is my dark side, my struggle,  my fear.  This is  my weakness that I so desperately try to hide from my fragile 10 year old daughter.  This dark side of me has moved me to seek the only Truth and Light that will set me free from the bondage of this LIE. 
Heavenly Father, I come to you broken, vulnerable, imperfect, yet perfectly made by you.  I give up to you my dark side, this weakness that I, and I am sure many of my fellow brothers and sisters, struggle with everyday.  Help us to find the Truth and Light through you.  You are the Way, the Truth and the Light!!  Amen!
Praying for MORE Sunny Side Ups!!