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? 

10 Things You Should Do When You Have RA.

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This list is a compilation of ten things you should do when you have RA.  After seeing the destruction it can cause, I want to share what I’ve learned.

I want you to keep this in mind.  I understand for those of you having the worst issues with RA… your biggest problem is that there is a huge lack of energy.  Therefore, making so many things (especially on this list) seem harder and impossible.  The best thing I can say here is:  Find support, push yourself, find your motivation, and just make the first steps.  Still today, I can’t believe how much finally getting on the right medications and taking them correctly (not missing a pill here or a shot there) made the most wonderful difference in my life.  A step in the right direction is the best step you can take…even if it’s the only step you can take.

This list is no particular order and is based on my own opinions.

1.  Always keep a Rheumatologist and keep them up to date.  You never know when a flare might hit or something unexpected could happen.  You don’t want to get caught without someone to keep you on track.  If your doctor isn’t helping you and you feel your doctor isn’t doing a good job, start the search for a new one.  Let me point out though, keep your Rheumatologist until you can become established with another doctor.  Some Rheumatologists have waiting lists of 2 or more months, so you’ll need someone to see and write your scripts while you wait.

2.  Take your medications like prescribed.  If your medications aren’t working for you or you have a question, talk to your doctor.  Here’s a hint:  If your meds are working good for you….you won’t feel like you have RA.  You may have some joint damage that may still cause limitations, but the main pain that you feel when RA isn’t controlled, will be mostly gone.  I didn’t know this was possible a long time ago.  Most of the things I took, just slightly lessened the pain.  Now, except for the limitations I’ve developed over the years from not doing most of the things I needed to do, I can live and feel pretty normal.

3.  Stretch.  Stretching helps more than some might realize.  A lot of the pain you get with RA can come from tension and weakness in your muscles and tendons.  Have you ever woke up in the morning and spent at least 5 minutes doing some plain old stretching and thought, mmmm that felt really good?  Then maybe you noticed you felt looser.  If you spend a lot of time sitting in one place, you really DO need to get up when possible and stretch.  Walk around.  Raise your arms.  Touch your toes.  Turn your head back and forth, to your chest, and back toward your back.  Don’t forget to stretch your elbows, wrists, and fingers periodically.  Your doctor can talk to you about this and probably give you some handouts on great stretches for people with RA.   Here is a link from WebMD.com for hand stretches: http://www.webmd.com/rheumatoid-arthritis/guide/hand-exercises-rheumatoid-arthritis

4.  Exercise.  You knew it was coming.  It’s true though, your body especially, needs exercise.  Weak muscles can really inhibit your abilities to do a lot of things.  If you’ve broken a bone, say an arm, then you might remember how weak it was after it was immobilized for a length of time.  You may have needed some physical therapy to get the strength back.  Well, it’s a lot like that with RA.  Your joints hurt, so you’re afraid to move them.  It’s human nature to not want to cause pain to ourselves.  However, the less you move, the more your muscles weaken and begin to deteriorate.  Which means, you feel even more crippled.  No one needs to feel like this if it can be helped.  You don’t have to strive for six packs and marathons.  Just simple activities and exercise can make a difference.  A physical therapist can do great wonders in helping you get those stubborn body parts going again.  If you’re thinking right now, physical therapists..nah, I won’t go there.  Well, then maybe you don’t hurt that bad or you need to hear a giant pop (joking).  Even in one session they can teach you the best exercises to strengthen your weakest parts.  Keeping your weight under control is a good thing regardless of whether or not you have RA or you’re free of health issues, and one good thing that comes out of exercise is it’s help in tending to weight problems or maintaining weight.

5.  Make time for you.  I can’t stress this enough.  People who don’t have RA, really have no clue what you’re going through.  They’ll want to pull you one way or another.   Remember, they don’t understand, but you do.  If you need two hours in the morning before you can feel good enough to do something, then take two hours.  I’m not saying a little push here and there isn’t good for you, but the point is to do what’s best for you.  Especially making certain, that you make time for those exercises and stretches I was telling you about.  If you were on your feet most of the day and every step has become agonizing (this can still happen even with great meds or medicinal remission) get off of your feet.  Whatever it is can wait and if it can’t, ask for some help.  Also, more importantly make time to do the things you enjoy.  People who have RA have a tendency to get depressed, so it’s important to take time out here and there to remember what matters and what fun life can be.  I mean, if you’re depressed, you don’t want to take care of yourself and when you have RA it’s very important that you do.

6.  Challenge yourself.  Don’t be afraid to set goals and make plans.  One thing I’ve learned while having RA is it can be hard to make plans or set goals.  Once again, I’m stressing the fact that you should really make sure you’re on meds that work well for you.  The reason is, those “bad days” can almost be eliminated.  Which can really help when it comes to making plans and setting goals.  In the days where I would have random and really bad days,  I found it was nearly impossible to actually achieve what I set out to do.  This alone, can play a part in depression.  I have a hard time sitting on the floor.  It’s uncomfortable getting up and down from it.  It’s not all that comfortable while I’m there either.  In spite of this, every once in a while, I just do it.  I make the extra effort and make a big kaboom as I land on my bottom.  Not the biggest challenge I’ve put on myself, but it’s something that even 5 years ago I wouldn’t have thought possible.

7.  Do your research.  There are a number of things you as the patient can research to make things a little easier all around.  In the days of high-speed internet, you can just about connect anywhere to find information you may be looking for.  I’ve even been in the doctor’s office and when I had a question that my doctor was unable to answer, out comes his palm pilot where the answer was found.  Although, I believe you should somewhat trust your doctors, I also believe you should keep your own eye out on new information related to RA and RA drugs.  Looking for a new Rheumatologist, do your research there as well.  Word of mouth has also been a useful tool for me in the past.  Researching can involve better attention given to your surroundings when at a doctor visit too.  Once, as I sat in a room in which the door was left open, I heard the doctor visit 2 patients before me.  Each patient had been told they should schedule for a knee wash.  So, I wasn’t surprised when it was my turn and I was advised to get a knee wash.  I did some research and found that a lot of doctors use this to make extra money.  That the procedure isn’t completely necessary and a lot of insurances won’t cover it.  Another time research may come in handy is when it comes time to filling prescriptions.  When our prescription insurance changed, I was unable to use the same pharmacy I’d been using my whole adult life.  It also turned out Enbrel couldn’t be filled in the pharmacy unless I wanted to pay out-of-pocket.  That wasn’t going to happen.  What did I do?  I researched and found out that I could have it delivered to me and my insurance would cover it.  Weird, but hey, as long as I’ve got my shots and at a reasonable price, I’m happy.  Once, we had a lapse of insurance.  That’s when I found out about the Enliven Program.  Basically, it pays to do your research.

8.  Keep your own records.  This was something I didn’t do and it was a big failure on my part.  Giving your memory something to do is good, but you never know when you might need a back-up.  Keep a record of the medications you’ve taken.  The dosages, lengths of time, side effects, pros and cons, and effectiveness.  Your doctor has records, but if records were lost somehow, would you remember what you tried 10 years ago and how it worked for you?  Keep a record of doctor visits.  Including what you talked about and how you felt that day.  Many times I’ve went for my appointment with questions in hand and plans to talk about this or that.  However, when the doctor came in I felt rushed so I skimmed to the issues I wanted to discuss the most.  By the way, if every appointment feels rushed and you feel like you’re doctor isn’t giving you the time you need, it might be time to make changes.  Keep a record of tests that were done.  Which tests and the overall results.  I’ve thought about keeping track of when a flare-up or just an increase of pain happens too.  This might help with pinpointing triggers for the excess pain.  Example, a cold rainy day.  That tends to set many people with arthritis off.   Stress is another possible trigger.  A pain journal would be ideal in this case.  I feel this is important.  Has this ever happened to you?  Your appointments are generally 3-6 months apart and you experience a lot of ups and downs during this period.  The day you go in for your visit, you’re feeling really good.  When two weeks ago, you were feeling like your body was falling apart by the hour.  Did you tell the doctor about two weeks ago?  Possibly, but possibly not because…you felt good the day of your appointment.  The following link takes you to About.com in regards to how to keep a pain journal:  http://pain.about.com/od/livingwithchronicpain/f/pain_journal.htm

9.  Talk to your doctor about a handicap plate, sticker, or placard.  You may not feel disabled or maybe you do.  However, your pain is real and you’re trying to live your life to the best of your ability.  Say it’s a bad day and you have errands to run or things to do.  Why make it harder by having to park way out from your destination, if you can park closer?  If it’s a good day, park out in the boonies if you want.  The point is, at least you have options.

10.  Take control of RA, don’t let it control you.  If you take control, it changes everything.  You have a life.  Quality of life is the key here though.  Breathing is not enough.  Breathing fast because you just hiked a mile or chased your grandchild around the yard?  Now you’re getting somewhere.

If anyone has more they’d like to add to my list, feel free!