Sunday, August 7, 2011

It's Been A While...

It's been a while.  It's been a LONG while, I know.  I think I have had a bad case of writer's block.  Ok, maybe it was the fact that my Sunny disposition was NOT so sunny and I had absolutely nothing inspiring to say.  The end of the school year for me was one of the hardest times I have had to endure in a long time.  It was the most difficult time I have had to endure with my illness to date.  I was full of false hope from my doctor telling me that my Humira injections were going to make me feel so much better (not to mention the wonderful commercials I have seen for it).  I was exhausted, not tired, a never ending exhausted...a to-the-bone exhausted that stripped me of my ability to think, speak, and even care about what was going on around me.  With that, my rheumy told me to just drink more  I was in pain, in constant inflammation, and feeling very certain that I wasn't going to make it to the end of the year.  I had to keep telling myself, "just a few more weeks"...then, "just X amount of days"...finally resorting to, I will try to make it through this next hour.  I pushed myself and pushed myself, and for what?  A paycheck... We are so worried about money, that my mental, physical and emotional health was pushed to the brink. 

On top of all of this, had been a progressing stomach issue that continued to get shrugged off.  It started around February, and when I first brought it up to my rheumy, she said it was common and to make sure I continued my folic acid.  I told her I was taking Pepcid daily and it wasn't helping.  By April, my last appointment with her before her maternity leave, I let her know that my stomach was better (neither was my RA for that matter), and that I was having trouble eating.  I told her I was chewing Gaviscon throughout the day, which really wasn't helping.  And, I told her again about my exhaustion and my inability to mentally function during the day.  Drink more coffee!!  Oh, ok...Kids, yes you--put down your calculators, we are running to Starbucks.  I am sure no one will  mind!  Oh wait, I can't do that...the coffee is making me sick.  Duh!   And, I don't think I sneak 30 5th grade students out to Starbucks on a daily basis!

By May, I was happy if I ate the equivalent of 1 meal a day.  I was just sick to my stomach, food went right through me, and I gagged and gagged- a lot!  With my rheumy on maternity leave, I thought I would hold out until my appointment with the other Rheumy in her practice in June.  Oh but wait, he decided to quit before my appointment! 

Summer is usually a relaxing, regenerating, and recuperating time for me.  However, not this time.  I spent most of June and July flaring up and very sick.  My voice is strained making it difficult to talk and I have a difficult time swallowing without gagging.  So, my husband decided enough was enough and sent me to his PCP...who in turn, sent me straight to a Gastroenterologist, who in turn ordered an Endoscopy to be done.    The procedure, along with the biopsy and esophagus dilation, was done this past Friday as I await the results.  My theory, and my hope, is that it is the methotrexate and nothing worse.

Summer is pretty much over for me, with having to go back to work tomorrow to start setting up my classroom, and officially reporting for duty next Monday.  My RA is not under control, I am still tired (even on summer break), and I am still sick.  The sunny side has got to be in there somewhere...right?  Oh yeah, at least I am bringing home that paycheck!  :)  (Insert sinister giggle here)...

The sun IS there, even if you can't see it behind the clouds...

Sunday, May 15, 2011

The R.A. Roller Coaster

Ah, the roller coaster of life, full of twists and turns, ups and downs...If that is just life, what is life with Rheumatoid Arthritis?

Imagine the biggest most frightening roller coaster you have ever seen, only with the shortest line!  Hmmmm, why is that? ;)  This roller coaster is not the kind of roller coaster that anyone would volunteer to get on.  I didn't choose this coaster, this coaster chose me.  The R.A. roller coaster has ups and downs, that's for sure.  But, my roller coaster has seen fewer ups that it has downs.  Though exhilarating to some, the downs on the R.A. coaster can be steeper and more unexpected than most.  Just when things seem to be at an even keel, you can plummet to what appears to be an endless depth.

Like a regular roller coaster, the R.A. monster coaster has its share of twists and turns.  What's the difference?  Perhaps it's the frequency and severity of those twists and nauseating turns that make life with R.A. difficult to handle at times.  The twists and turns of the pain and exhaustion, popping out of nowhere, gripping you at the most inopportune time, make it feel like a never ending battle. 

What about the dark tunnels?  For a person with R.A., the dark tunnels can be feared the most.  I don't know many people with Rheumatoid Arthritis who will deny having bouts of depression to fight through, along with the pain and fatigue.  Even when focusing on the "ups", one can find themselves so physically and mentally exhausted, that emotionally it becomes very difficult to cope with.  Going through those dark tunnels can seem like the scariest part because this is the moment when my roller coaster appears to go in slow motion.  I can look in every direction and all I can do is embrace the darkness and move forward.  There is no going back and there is no looking back. 

Moving forward-the motion of life, the momentum of a roller coaster.  Moving forward-no matter how scary the roller coaster, no matter how terrifying the ups and downs, no matter how dark the tunnels get-is the key to moving through it.  It's not the key to getting off the roller coaster!  Only the Lord knows when the car of our roller coaster will come to a complete stop!  All we can do is go with the flow, enjoy the ride (no matter the ride), and keep moving forward through it!  (Oh, and please keep your hands and feet inside the car at all times!)

Whether you are in an Up or a Down, look to SUN!  When you enter that dark tunnel, look to the SON! 

Many Blessings!

Saturday, May 7, 2011

The Day Rheumatoid Arthritis Went on a Field Trip...

This past Thursday, we took our 105 5th grade students on an outdoor educational field trip.  They've been looking forward to this for months, while I have been secretly dreading it for months.  The students were split up into 4 groups to rotate through 4 stations:  Archery, GPS, Team Challenge Course, and a Giant Swing (which is literally a giant swing for 3 kids and loads of fun).  Each station was located at different areas of the beautiful Lake Geneva Youth Camp, which required a lot of walking and standing on my part.  The GPS station sent us on a scavenger hunt, which had us hiking all over the the place. 

Now, as a precautionary measure, my husband, also a teacher in our school district, took a personal day to chaperone.  He came to act as/for me in the event that I wouldn't be able to keep up due to my RA.  Let me tell you...I couldn't keep up!  By the end of the day, the pain had gone from throbbing to stabbing, and I had gone from tired to physically and mentally exhausted. 

Upon arriving home, I couldn't even keep my eyes open during story time with my son and fell into a deep sleep-right through dinner.  Almost 2 hours later, the pain in my legs woke me up.  My family was about the house getting on with their evening as I limped around heating up dinner and eating alone in tears from the pain I was in.  I took a Meloxicam (my prescribed NSAID and second dose for the day, despite the once a day prescription) and Tylenol Arthritis. 

Tylenol Arthritis is to my pain what a Band-Aid is to a severed limb...pointless.   But, out of desperation, I took it anyway.  I stayed up for about 2 more hours with my family and went right back to sleep on the couch once again, until my husband woke me up to send me to bed.  This is what quality time with my family has become.  Like a stranger watching from the outside looking in, I am watching my family pass me by. 

Begrudgingly, I got up for work on Friday, taking another Meloxicam (ignoring any thoughts about my liver), taking more Tylenol Arthritis, and a stimulant to fight off the exhaustion so I can mentally function at work.  What some people might not realize, nor appreciate (in particular, my doctor), is that teachers do need to have a high degree of mental alertness when at work, to do the job we do:  to teach;  to deal with not just one behavior issue, but multiple and sometimes at the same time;  to multi-task;  to deal with the stress of the job, the paper work, the noise, the interruptions;  to be on our feet all day;  to deal with 29 different kids at once all day long.  There is no room for mental fog.  There is no room for exhaustion-not this type of exhaustion, or else chaos can erupt.  So, I have started taking a stimulant prescribed by my neurologist, just so I can maintain mental clarity and function at work.  Some days it is kind of helpful.  On Friday, it was like taking a sugar pill.

By the end of the day, I spent all of the energy I had and completely shut down to the point where I couldn't even talk to my family with more than 1 or two word responses.  We drove to our seasonal campground site with mommy silent and eventually fast asleep.  Even upon arrival, I pulled together as much energy as I could to put the food in the cabinet and refrigerator, and then I crashed.  For the first time, I literally crashed physically, mentally and emotionally as I watched the kids running in and out of the camper, playing and laughing.  I watched the dog chasing them all around.  I watched my husband being a busy bee, setting things up, getting firewood, raking leaves.  And there I sat, spent, silently in pain with nothing left to enjoy, to give them, to participate with. 

For the first time, I thought a very depressing thought, "so, this is what life looks like without me in it."  I mustered enough energy to drag myself to bed, fully clothed, no bedtime meds, and wondered, how can RA be doing this to me?  How am I going to continue doing this-to myself, to my family?

So many questions all of the time, and yet, so many will go unanswered.  I did the only thing I knew what to do to cope.  I went to bed and prayed that the Lord will help me fall asleep quickly and soundly.  12+ hours later, it's a new day filled with new hope, new uncertainties, and new questions.  Thankfully, it's also a day I am NOT working, because having to take my meds I missed last night, has now put me into a medication fog and I would not be functioning well at work today at all.  Thankfully, today is Saturday and I can spend more time with MY children and give THEM what energy I have.  Thankfully, there are no more field trips this year!!  (Oh, but a full day of Field Day is scheduled for the 20th--ugh)  Thankfully, summer vacation is coming soon, but not soon enough. 

What I wonder is, how can RA and my job work together?  How will RA learn to live in harmony with the expectations of my profession, since the expectations of my profession aren't changing, only becoming more challenging?  So many questions, that may go unanswered...

May you find all the answers to the questions that RA has brought into your life...Many blessings!

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!