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!

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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/

The Beginning of a Life With RA. Part 2

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The chaos begins!

So far, I’m not impressed with the Rheumatologist I see back then.  He’s arrogant and makes me feel like I might as well jump off the plank.   From “The Beginning of a Life With RA.  Part 1” (The first Rheumatologist I saw said I wouldn’t be able to walk by the time I was 30).  I have to make it a point to say that I’m going to be 30 this year, and if nothing drastic happens, I’ll still be walking.  Mind you, in all fairness, he was just trying to tell a young girl that she needs to be vigilant in the fight for her body’s mobility.  However, I think a different approach could’ve been used. 

I was tried on this drug and that one.  My mom’s insurance wouldn’t cover the good stuff.  The Gold.  Thankfully, since I was attempting college, I was still covered on her insurance.  Yes, I say attempted, because that’s what I did.  Due to a car accident that totalled my car and gave me a concussion, my newfound fatigue and pain, not to mention a school that was an hour drive each way…I failed.  I only made it a month into my freshman year.  Guess what happens when I’m not in college anymore?  Right, no insurance.  Then the doctor bills start to pour in.  What do you think that caused me to do?  Yes, I stopped making my RA appointments.  By the way, for all of you newly diagnosed RA patients…Find a good doctor, that you like and trust.  Go to them.  Do what they tell you.  If something isn’t working, let them know.  They are they for you..because of you.  I say this because, I did the opposite and looking back now and at my crippled fingers, fused wrists, swollen ankles, swollen knees, and constant stiff neck…I was stupid!!! 

Things are a little blurry from those days.  I know at some point, I switched doctors.  I found one I liked quite a bit and had a new approach with me.  As well as, payment options I could afford.  He’s the one that put me on Vioxx.  That didn’t turn out so well though.  One day, I went with my mom to get glasses.  I had been experiencing hives but we weren’t sure what was causing them.  As I walked around the store looking at pairs of glasses, I felt the hives coming on.  Well, if you’ve been in an eyeglass store, you know there are mirrors everywhere.  So, I find one to see the extent of the damage.  I screamed, WHOA!  Holding my head down, I feverishly searched for my mom.  I looked like the beast from the Disney tale.  I was also suddenly not able to see as well.  Ok, ok..I know.  How strange, right?  I’m in an eyeglass store and I can’t see well.  Hahaha.  I finally find my mom and not much longer after I find her, I straight up went blind for what felt like forever, but it was more like 2 minutes.  I could hear.  I could smell.  I was coherent.  I just couldn’t see.  The lady that was helping my mom looked at me, freaked out, and said, “get her to an ER NOW!”  Long story short.  After hours of ekg’s and numerous other tests.  They decided I was probably allergic to Vioxx.  Then the doctor put me on this thing called Prednisone for the reaction.  Go ahead, moan and groan..sigh, boo.  Whatever you wish.  This was the beginning of a love affair for me.  I’ve seen the Prednisone love affair simply put as a love/hate relationship.  To me, it describes Prednsione perfectly.    ….Then the moon was rising and so was my jean size.  See part 3 for further details.

Click below to find Part 3

https://dreamzncolor.wordpress.com/2010/05/20/the-beginning-of-a-life-with-ra-part-3/

The Beginning of a Life With RA. Part 1

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At the age of 18, I should’ve been heading off to college.  I should’ve been on the brink of an exciting adventure, but I wasn’t.  I had a strange knot and a lot of pain on the side of my foot.  I worked on my feet a lot.   I thought for sure, worse case scenario, it was a bunion.  That actually makes me laugh now.  My mom urges me to see a doctor and insists that she’ll go with me.  I’m thinking, c’mon mom.  I’m 18 now.  Seriously.  Cut the cord.  The doctor walks in.  Asks how I’m doing, so I proceed to tell him and show him.  He’s just doing his usual.  Mmmhmm, yes I see, ok.  He leaves the room, stating he’ll be back in a few minutes.  I then go on again to my mom about the bunion idea.  Then when he comes back, he says he wants to run some blood tests.  Things flipped upside down for me for a few minutes as he mutters things about Rheumatoid Factors and a whole bunch of other things I didn’t understand.  At this moment, I’m glad my mom is there with me.  She happens to be a nurse as well.  I start asking her questions when he leaves the room again and she’s hesitant to say anything at all.  It felt like forever, but he came back.  He says my Rheumatoid Factor is high.  I’m shaking my head, not understanding what’s going on.  Then he hands me a script and says you need to see a Rheumatologist.  I’m thinking, isn’t that for people with arthritis.  Like older people with deformed hands and bad backs.  I just couldn’t wrap my head around the whole thing.  Well, that was the beginning.  It was rough.  It got a lot worse than that silly pain in my foot.  The first Rheumatologist I saw said I wouldn’t be able to walk by the time I was 30.  Way to wipe away a young woman’s dreams.  It just about did too.  That’s more the ..meat of my story.

Click below to find Part 2

https://dreamzncolor.wordpress.com/2010/05/06/the-beginning-of-a-life-with-ra-part-2/