Brushing Off the Dust and Catching Up

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East Slope in June 2011

Image by Just a Prairie Boy via Flickr

Has it really been so long?!  Re-reading my own posts, I realized the huge hurdle I’ve jumped.  What do I mean?  I still feel good.  In fact, the other day, it occurred to me that having RA doesn’t phase me much these days.  Of course, I still have to poke myself with Enbrel once a week and take an NSAID twice a day, but that’s pretty much the extent of my RA frame of mind.  Have I really done it?  Have I really reclaimed my body?  Stiffness comes and goes, but it’s not the.. I can’t move for a week kind of stiffness.  It’s more like the, I’ve been sitting the same way too long, kind of stiffness.   So, YAY!!!  If I can do it, so can you!  If you haven’t already that is.  *smiles*

Now, moving on to a sad note.  There is a reason for my sharing this…  My mom passed away in June 2011 at 67.  She was a hardworking, intelligent, tough little woman, and a dedicated RN.  Unfortunately, she developed COPD and her body just couldn’t cope anymore.   It was/is probably one of the hardest things I’ll ever have to deal with in my lifetime.  I feared the stress would wreak havoc on my body, but it didn’t.  What it did do, was send me into a world of chaos.  A world of rediscovery.  A yearning to explore far away cities, climb mountains, swim with dolphins.  You know, live.  I had decided that I’d had enough deprivation.  Those of us with RA are faced with the feeling of deprivation far too often.  The problem was.. I had kids, bills, responsibilities, and now a dog.  It wasn’t like I could just pick up and go like I wanted to.  Looking back now, I may have just been wanting to run.  Well, time inched by and reality set in.  Then it just hit me.  I can explore those places I’d like to go.  Climbing a mountain isn’t impossible.  I CAN swim with dolphins, even if I can’t swim.  So, I’m not really deprived.  It’s just a matter of setting a goal and following through.  In the meantime, I have a beautiful family, a desire to learn, and most importantly I CAN MOVE!!!  Things began to calm down after that.  Maybe the chill of the coming winter set in too.  No matter why, I felt more at ease.

My mom consistently told me, “God will heal you”.  She’s one of the few people in this world that truly saw what was happening to me.  Like she felt it in her own bones.  She would push me to soak my feet in Epsom Salts, she would rub Ben-Gay on me even as I fought her, she would tell me to pump those legs while I’m sitting there, and remind me to raise those arms up.  In other words, she was my biggest support.  At first, I thought that support was gone when we lost her.  In a way, it is.  At the same time, it will always be there.  As I cook a meal, I can hear her telling me what to do next.  When I go shopping late in the evening, I can hear her telling me to be careful.  When the day has been too hard, I can hear her telling to take one day at a time.  She made a positive impact on me.  As a mom should.  You never know how much of an impact you can make on someone and how it will affect their life.  Even if you can only move your mouth to speak, especially with the way things go viral now, you CAN make a difference!  So..keep those positive attitudes up and don’t forget to stretch!

My Mom

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To My Disbelief…

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Winter is moving in and I’m still doing ok. *Knock on wood* Ever since the “new me” came to be earlier this year, I’ve been fearing a let down. Spring came and went, things were ok. Summer came and went, wow this is amazing. Now Fall is here and on it’s way out and I still can’t complain at my body. My energy levels are still up most of the time and overall pain isn’t a factor. Which is great considering my daughter is now one year old and mobile. My son is surprised to see me doing things and questions me quite frequently because he only knew the sore mommy…the tired mommy…the I can’t honey, mommy. The joy and disbelief on his face outranks mine. Tossing a football around with him in the backyard seemed only a dream even last year. Now it’s reality. I swear I even saw a tear in his eye. For a five-year old, that’s huge! 

I’m still a little nervous as to what will happen when the temperatures drop to zero and below freezing.  I guess I’ll do my best to stay warm.  Although, at least one time this winter;  I want to have a snowball fight, make snow angels, go sledding, and build a snowman with my family.  Followed by us all cozied up together with our hands wrapped around mugs of hot chocolate and rosy cheeks.  There will have to be pictures as well.  A way to remember the time I pushed the boundaries and enjoyed things with my family instead of standing by and watching.  Someone else will have to hold the camera this winter!

A Reminder For Those With RA

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A current picture of my right hand.

1.   Raise both arms above your head and stretch out slowly and reach as high as you can.  Taking a deep breath in as you raise your arms.  When you reach the peak, breathe out slowly.  Keep your back as straight as possible.

2.  Try to touch your ear to your shoulder…hold it.  Now the other side.  Next put your chin to your chest as close as you can and hold it.  Bring your head back and look up above you, now extend back even further to see behind you.   Turn your head side to side, trying to make your chin parallel to your shoulder.

3.  Turn your torso to the left and right.  Really try to push so that you can see behind you.  Next, put your hands straight out in front of you and tuck your head down then reach.

4.  Put your hands in prayer position in front of you and slowly bring them in toward your chest.  Keeping your hands in prayer position, raise them up and then down slowly.

5.  While sitting, and your feet flat on the ground, lift your heels off the ground so that only your toes touch.  Then rock your feet so that your toes are off the ground and now your heels are there instead.  You can do this one even as you’re sitting and surfing the net or checking email, etc.  Try to do this for at least 3 repetitions of 10.  I feel lots of popping when I do this, but it feels good as well.

My wrists are mostly fused, my fingers have deformities, my ankles have lost a lot of range of motion, and my neck appears to be permanently stiff mostly because I wasn’t doing what I should’ve been doing.  It doesn’t take long, and it’s a good habit to keep stretching.  There are many  stretches you can do.  Stretching to reduce stiffness can be very beneficial.  Hope you feel even a little bit better.  Feel free to add stretches you like to do.

My Doctor Is Losing My Respect.

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Upon yet another appointment with my Rheumatologist on Monday, I decided it might be time to make the change I’ve been thinking about. The wait time is usually minimal, it’s not hard to get appointments in a pinch, and the staff is pleasant. There are many pros to my doctor’s office. However, when it comes to the fifteen or so minutes I actually spend with him, I feel cheated somehow. I seriously think he could have a double life as a salesman. Why do I say that? When he enters the room it’s how are you, compliment, compliment, blah blah blah. Then comes the inevitable talk about a knee wash (Arthroscopy) he feels it’s necessary I get. When I turn him down, he instantly has a scour on his face and becomes agitated for the rest of my appointment in which he will still push a knee wash.  I’ve done a bit of research, and what I’ve read leads me to believe I’m not a candidate for this.  As well as, it may cause more pain.  The following are links to a few articles on the subject: 

http://orthopedics.about.com/cs/arthritis/a/athroscopy.htm, http://www.arthritistoday.org/conditions/osteoarthritis/news-and-research/arthroscopic-knee-surgery-2.php, http://en.wikipedia.org/wiki/Arthroscopy

His reasoning for my needing this procedure was that my knees are still slightly swollen and warm.  However, my sed rate was up from 6 to 19, which is still within normal ranges.  Therefore, Azulfidine was added to my regimen.  Generally, my knees don’t hurt too badly.  The latest x-rays done on them about 6 months ago,  showed some Osteoarthritis.  I expected them to be very bad, but they weren’t.   All in all, his pressuring me about a knee wash every visit is getting old.

Plans are in the works for finally establishing a new Rheumatologist.  I’ve seen many in the last twelve years, due to all the moving we’ve done.  The doctor I’m currently seeing is the doctor I was seeing before my husband joined the military.  When we moved back home, it seemed natural to return to him.  As the years have gone by, I’ve learned a lot about doctors and taking care of myself.  I guess I’m just not as naive as I once was.

Follow-up:  In my last post, I was curious about some issues I’ve been experiencing.  When I brought the topic of my arm feeling like it was floating away at times, my doctor looked me funny and said he’d never heard of it.  Then he went on to say, if the problem remained, that I might need to have a nerve test done and see a Neurologist.  He quickly moved on to something else.  I never even got to ask about the issues I experience in the evening.  I did do some internet research about the floating arm feeling.  It was best put as…the way things feel so light after you’ve been carrying or lifting heavy things for a while.  This sensation seems to be linked to either neurological disorders, anxiety, or just random occurrences among the general population.

Are These Issues Related To RA?

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A current picture of my right hand.

 

Even though these days, my RA is pretty much under control, I have a couple of issues that I believe are somehow RA related.  I have an appointment scheduled with my rheumatologist on Monday and plan to ask about the issues I’m having.  

Issue #1:  To my surprise, one of my in-laws asked me about something she had experienced, and it was something I had experienced as well.  The surprise of the matter was that I really hadn’t linked it to RA.  I thought it was anxiety related.  What she shared with me was that she randomly lost sensation in her arm and legs.  Not like pins and needles, but like they disappeared.  I immediately felt confident that this was the same experience I was dealing with.  I explained to her that I had something similar happening, but it felt more like my arm was floating away.  Her eyes got huge and she said that was exactly what it felt like.  

When I was in elementary school, I remember a trick us kids would do.  Lean one side of your body up against a wall, focusing on pushing your arm against it, for about a minute or so.  Then when you stepped away, your arm would rise up all on it’s own.  That’s how my arm feels now when this issue happens.  

The person I spoke with, isn’t on any of the same meds as me.  She’s only had RA for 5 years and you really can’t tell she has it by looking at her.  So what is the link?  Has any of you experienced this as well? 

Issue #2:  Almost every evening, I feel like I’m getting a cold or the flu.  I have muscle aches, my head feels foggy, I have chills, and I just want to curl up somewhere.  Then, I take my afternoon pill (Lodine).  Within 30mins. to an hour, I feel completely normal again.  Sometimes even better than I did earlier in the day.  I have no idea why and it’s been happening for quite a while now.  I’m  feeling this way as I type out this post.  I guess the positive part of this is I know when I’m late on my pill.  Does anyone else experience this? 

My RA Is Quiet..For Now

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A current picture of my right hand.

 

I have to say, for about 6 months now, my RA has been super quiet.  *Knock on wood*  It’s been wonderful.  It’s been surreal.  All of the worry and time spent thinking I would never feel “normal” again, was a complete waste.  My mom gave me some great advice once, but of course I chuckled and thought to myself that she needed to walk a day in my shoes.  So…what was this great advice?  “Worrying is like rocking in a chair.  You can do it all the time, but you’re not going to get anywhere.”   I still can’t help but fear that when I feel too comfortable, a flare will come out of nowhere and hit me extremely hard.  

A couple of months ago, I had blood work done for my doctor.  When we went over the results, he pointed out that my sed rate was 6.  I laughed so hard and felt this well of emotion pour out.  I hadn’t seen a sed rate that low since before I was diagnosed almost twelve years ago.  The doctor then said it appeared I was in remission.  I believe he called it medicinal remission.  

Over the years, ups and downs have been a prominent force in my life.  In a way, I think it’s good to have  experience in such things.  You get kind of use to running along smoothly and quickly when all of a sudden… **WHACK**…brick wall.  I guess you can say, at the moment, I’m waiting for my brick wall. 

Some may wonder what I’m doing that’s made a drastic  change in my situation.  I take Enbrel (the sure click pen) 50mg/weekly.  I take Lodine/Etodolac 400mg twice daily.  I rarely have time to exercise properly, but I do what I can when I can.  With a four-year old and 8 month old in the house, I move plenty.  I do stretch a lot more than I used to.  I’m currently a little overweight or some might say I’m average.  I try to eat 3x a day and drink plenty of water.  Basically, I’m not on any special diets or undergoing new age therapies.  Mine is just an ordinary life boosted by the meds listed above. 

Enbrel was part of my regime in the past, but something always seemed to get in the way of taking it regular.  Kind of like an engine needing to warm up, Enbrel didn’t really get a chance to get fully warmed up before I would be off it again.  The Lodine is new to me.  It’s worked pretty good for me.  For a short while, about seven months ago, I was on Arava as well.  That was interesting.  I lost a lot of weight (baby weight included).  The pain and stiffness was gone.  Then…this is where I get back to ups and downs…I started to itch.  In my knuckles of all places.  The bottoms of my toes and my hands itched as well.  A horrible itch like I’ve never had before.  I was allergic to it.  I have pondered the idea that Arava is what jump started me.  I really can’t quite explain how amazing I felt.  

What is my pain like now?  The RA is quiet, but the damaged joints do still remind me that they’re damaged.  When it’s going to rain, I feel achy.  When I’m on my feet too long, I feel achy and sometimes my right foot hurts a lot.  Anytime I sit in one place for too long, the stiffening begins.  The nice thing is, once I start moving around again, the stiffness goes away.  Overall, I can’t complain.  My husband has kidded that as we’re getting older, he’s moving slower and I’m moving faster. 

How would I feel if I were to get hit with a bad flare again?  I can’t say for sure, but I know one thing…there is hope.  If things were to go downhill, I can look back to now and remember how what I never thought possible before, really was possible afterall.