Upgrading My Life 101 – I Control the RA

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Interior of doctor's office, Mid-City New Orleans.

Interior of doctor’s office, Mid-City New Orleans. (Photo credit: Wikipedia)

Today’s lesson.  What did I learn today and how did it improve my life?

Today I’ve learned that I really need to count on myself and hold myself accountable.   I messed up and now I’m paying for it.

For quite some time, I’ve been managing my RA really well.  I was always worried the day would come, in which I found myself in pain again.  The thing is, I didn’t think it would be my fault.  In this case it is.  So what happened?  In short, I relied on others to keep me in check with Enbrel, instead of myself.

Here’s the story:

Last weekend, I realized it was time to take my weekly shot of Enbrel.  To my surprise, when I reached in the fridge to get it, there was no Enbrel to find.  I was out.  I’ve been late a couple of days in the past, and it didn’t really affect me much, so the worry wasn’t really there.  I made the call to Caremark and set-up a delivery for the coming week.  No problem right?  Wrong!

A couple of days go by and I receive a call from Caremark saying that since there were no refills left on the prescription the doctor would need to be faxed.  I start to panic a bit here, because I know I haven’t had an appointment yet this year and they would probably want me to come in.  However, the doctor would want labs done and with results in the office when I had my appointment.  We’re talking at least a week without Enbrel here, by the time it’s all said and done.  At least I thought.

As suspected, I receive the call that the prescription wasn’t refilled and I need to call my (RA)doctor’s office.  When I do, I’m surprised with an opening the very next day.  However, I don’t have scripts for blood work and it wouldn’t be processed by then.  I explain and the nurse tells me the next opening isn’t till August 2nd.  WHAT?!?!  At this point I’m freaking out!  Then, I begin to explain the situation.  She says she may be able to give me a couple of samples when I come in for scripts for blood work.  With a huge sigh, I’m relieved.  The office is closed on Fridays and they had to get my record, so I was going to have to wait till Monday.  On Monday, I would be without Enbrel for a week.  That’s not too bad.  Once again, or so I thought.

Monday comes, and I’m not doing bad.  A little sore, but nothing major.  I go to the office (which is 30 minutes away) and find that a different nurse is working and received no note about giving me samples.  Then she tells me they were out of Enbrel samples anyway.  WHAT?!?!  I could’ve cried at this point.  She did say they were expecting more to come in during the week.  That was good, but I was scared.  With two kids and summer flying by, being in pain was the last thing I wanted.  Sadly, I took the scripts and went on my way.

Tuesday morning, stiffness begins to set in.  So what do I do?  Move all day long.  For fear that if I sat too long, my body would attack.

Wednesday morning, OMG!!!  How did I live like this?  Less moving, more disappointment.  Phone call to the doctor’s office.  No samples yet.

This morning, I can’t believe I was so stupid!  All day, I’ve wanted to lay down.  My elbows feel like they’re stuck at crooked.  My knees are tight and hot.  That general achiness all over.  All because I didn’t take care of myself.  I’m supposed to count on myself.  I know better than this!  Still no samples.  Office isn’t open on Friday, so I may get something on Monday.  I may not.

I do feel there is another source for part of the blame.  TELEMARKETERS!!!  Why?  Telemarketers call our house from 7am to 9pm every day.  Even on Sundays.  We hardly answer our landline anymore.  In the past, when Caremark called to remind me it was time to refill, it showed up on the caller i.d. as Caremark.  I think they got passed off as another telemarketer this time.  In the end, it’s still my fault.  I would love to get them to stop though.

How is this lesson upgrading my life?  In no particular order:

First:  I’m going to find a way to end calls from telemarketers or at least greatly reduce the number of calls we receive in a day.

Second:  I will set reminders in my phone to alert me to make that important call.  As well as write them on my calendar.  No more relying on those reminder calls to take care of things for me.

Third:  Being reminded of the pain I could so easily be in again without medication controlling my RA, I’m going to remember to not take moving for granted.  It sucks to hurt like this.  I feel the RA trying to box me in again.  I feel for all of those out there still struggling to find the right regime for them.

Fourth:  Swim for hours, take even longer walks, and play with my kids till we pass out from exhaustion…when Enbrel makes my joints happy again!!!

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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.

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!