RA

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!

The Beginning of a Life With RA. Part 4

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In 2005, after being married for five years and thinking my marriage was over as well as my life, I’d had enough.  I was diagnosed with RA in 1998.  It had been seven years of pain, anguish, fear, and frustration.  I’m not a very religious person, but one morning I laid in bed in so much pain I felt I just couldn’t face another day.  I thought to myself something has to give or I’m going to have to take matters into my own hands.  Then I asked God, to give me a reason to live or take me now!  I begged and cried.  It was the worst hurt I’d ever felt.  Please give me a reason to live or take me now!  I just kept saying it over and over.  I ended up crying myself back to sleep.  When I woke up, I had slept the day way and my husband would be home from work soon.   I felt like the episode I’d had earlier was a nightmare.  I tried to pull myself together and focus on getting through the day. 

A week later, I noticed something odd.  My period, it hadn’t come.  After years of taking pregnancy tests and getting negatives, I didn’t really feel worried.  It did remain in the back of my mind.  My husband and I went out to a bar that night.  I ordered a beer, which I could normally chug down with the best of them.  I couldn’t this time.  I couldn’t stand the taste of it.  So, I ordered a 7&7.  It tasted fine.  I drank quite a few and tried to have a good time.  The next day, I felt rough.  That’s pretty normal after a night of drinking, but somehow I felt different and my period still hadn’t come.  I broke down and asked my husband to get a test.  Just to make sure.  I can tell you, guilt poured all over me when I read the results.  Pregnant!  It couldn’t be.  I didn’t think it was possible.  Then I thought about that morning a week earlier when I pleaded with God.  Give me a reason to live or take me now.  My reason to live, was it growing inside me?  I stopped all meds and proceeded to the doctor.  It was really happening.  The doctor was amazed I had figured it out so early.  I thought for a moment about how things might’ve been if it would’ve been even another week before I found out.  I had actually miscalculated when my period was due, thinking I was late.  When I really had another week to go before it would’ve been missed.  My life changed from this moment on.  The pregnancy wasn’t easy.  I’m not sure if I still had active RA or if the damage was causing the pain, but I got through it.   I had a reason to grab the bull by the horns and fight for what I had been blessed with.  So, I would just have to make a way for any obstacle that I faced and that was final.  Just make a way…there’s always a way. 

I’m not saying it was easy, but now.. just because it was hard..I didn’t give up.  I couldn’t, because a little life depended on me.  This was the end of the beginning for me and the beginning of a new way of thinking.  I had my beautiful son and suffered through an agonizing  flare up about a month later.  There was another factor in my life now.  My mom.  My husband was deployed to Iraq a couple of days after our son was born, so my mom came to stay with me for a while.  She was amazing.  She encouraged me and worked with me.  She pushed me  to take care of myself and helped in so many ways.  I think because of her support alone, another amazing development came my way not long after the flare.  I was walking better than I had in a long time.  I had lost a lot of weight, went shopping for some new clothes, got a new hairstyle, had a few sessions of tanning and in my opinion looked like a pretty hot mommy!  I couldn’t believe ..seriously couldn’t believe it was all happening. 

When my husband saw me after six months of deployment, his jaw dropped.  Tears rolled down my cheek from the look on his face alone.  After years of seeing me fall apart and us almost giving up, things were so unbelievably better.  Hope returned for us that day.  Our little family had begun and so had a new life.   The reason I’m sharing this story is for all you who might be going through something similar.  Don’t give up.  Keep positive and focused.  If you don’t have the support you need, find it.  I’m not saying the baby is what made the changes.  For me, having a baby was the motivation I needed to pick up the pieces and put the puzzle of my life back together.  Take care of yourselves.  I’ve got a new chapter to write about now.  I hope I can be of help in some way.

The Beginning of a Life With RA. Part 3

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So, the moon was rising and so was my jean size.  Anyone who has used Prednisone for an extended time knows what I mean by this.  Moon meaning my moon face was developing.  A not so lovely side effect of Prednisone.  Jean size is pretty self-explanatory.  This is another side effect of Prednisone.  I have to say though, at the time, I didn’t care because I had relief.  Everyone noticed my new look more than they noticed I was moving better.  It was sad.  I will admit, for a long time, I felt hateful toward most of the human race.  Mainly because I was feeling so frustrated in trying to balance things in my new life with RA.  At times I couldn’t see past how shallow some could be or how much people who can do everything so effortlessly take it for granted.  Most of all, I couldn’t stand being around people who appeared to have 5 cups of coffee because they had so much energy.  It was hard.  I could have 5 cups of coffee back then and you know what happened to me?  I’d have a panic attack and then fall asleep.  The Prednisone, never seemed to take care of my lack of energy.  It was nice to not feel so much pain, but I could still barely walk.  The damage in my feet, ankles, and knees had given me a very unattractive walk.  There went my chance at walking the runways.  Seriously though, body parts seemed as if they were just giving out one by one.  Even with treatment. 

Quick recap, part 3 took place after I had RA for almost two years.  I’d tried quite a few different drugs, but Prednisone seemed to do the best for pain relief.  After being on Prednisone for about a year, I hardly recognized myself.  I had gained 50 lbs easy and my face looked round and puffy.  I was now overweight.  Think about this for a moment.  When you have active RA, you have no energy, your meds can cause weight gain, the pain is unbelievable if it isn’t controlled, and your ability to be normal seems to have disappeared.  This all adds up and a bad thing comes to a head.  Depression.  Of course, right.  How can someone not be depressed with all of this going on with them and their body?  It’s such a vicious cycle too.  The less energy you have, the more you weight gain, the more you sleep, the stiffer you get, the extra weight causes the damage to your joints to increase, the pain makes you want to not move, your normal life seems to be gone, you’re sad, people don’t seem to understand and start to leave you behind, you’re even more sad…you get the point.  I do want to point out now though, I went through all of this.  Sleeping for one, doesn’t make it better.  It makes things worse.  A lot worse.  Weight gain doesn’t have to be extreme.  You can do your best and try to eat better to keep from gaining so much.  Your meds can be and should be changed if you’re not getting relief.  This is YOUR life.  Take charge of it or you really will fall into such a depression and it will be hard to come out of it.  Your body will be so mangled and it can’t really be fixed.  This is the most important thing I can share with any of you.  I could barely walk, I just thought my first rheumatologist was right.  I drank like a fish, because it felt like it helped the depression and pain.  I felt like going out and drinking with people gave me a “life”.  That didn’t do anything, but put my liver at serious risk.  Let alone, my whole body.  This went on for years and years.  Sometimes, I’m amazed I’m still alive.  I want to remind you though, this is the dark side of RA, but things don’t have to stay this way.  Also, Prednisone comes with some serious consequences.  Please, never solely rely on it.  My body is wrecked from it.  My hormones rage when I’m on Prednisone.  It’s not pretty at all.  Yes, when you go off of it, your weight somewhat returns to normal and your face slims back down.   However, the fast weight gain can really leave some marks on your body.  It also can lower your bone density.  Meaning your bones become more brittle.  These two things you can’t completely get rid of.  You can put cream on your stretch marks trying to diminish them or cover them up, and take calcium to help your bone density.  There are many other negatives of long-term Prednisone use.  All and all, it just adds to the mess you can become with RA.  There is hope and Prednisone isn’t it.  When you feel you’re at the end of your strength, make things easier, not the way you might think.  Find your motivation.  Trust me, it’s in there.  Read Part 4, to see what can happen when you find your motivation.

Click below to find Part 4

https://dreamzncolor.wordpress.com/2010/05/20/the-beginning-of-a-life-with-ra-part-4/