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.

What Would Happen If Night Became Day and Day Became Night?

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Weather forecast for the day, warm and sunny.  Whatever should one do on a day like this?  I would get outside and enjoy it.  Except there seems to be a problem these days.  The sun and it’s UV rays. Being fair-skinned, I’ve had my share of run-ins with these rays. There were a few times in my younger years that I spent all day in the sun and the next two covered in Noxema.  Trying to cool the sting of the nasty sunburn I was suffering through.

Now as the ozone layer that has helped protect our beautiful planet is disappearing, I ponder what will happen.  No more ozone layer means, no more protection from the effects of harmful UV rays A and B.  So, if this were to happen in extreme..would it possibly be best for us all to switch around the way we live life?  Work, shop, get-togethers, bbq, etc. during the evening when the sun was down or close to it.  Spending the daylight hours in our beds fast asleep like vampires.  People who work nights or have insomnia for example…experience this as the norm already.

I worked midnights for a while myself.  In retrospect, I rather enjoyed feeling the sleepy calm of the morning knowing I was going home to sleep while the world hustled around me.  The main problem I had with midnights was missing a somewhat normal social life.  If night were to become day and vice versa, I could work midnights and still carry on with a decent social aspect to my life.  How would everything else be affected though?  Would people even plant gardens?  What would happen in the farming community?  Open all-nights would become open all-days?  What would happen to everyone’s skin tone over decades and decades of this?  There would probably be so many things changed that we couldn’t even fathom them all.

The scary part is, I believe this really could become the way we live, for survival’s sake.  Of course, there is always a chance that either our bodies adapt in some way or the world succumbs to a major catastrophe.  I guess I’ll keep lathering on sunscreen hoping for a bit of protection until further notice.

What Came First.. The Hat or The Hair Loss?

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I have observed something over the years.  I’ve seen guys I’ve known a long time go from a thick head of hair to balding or receding hairlines.  Many say that it’s their bad genes contributing to this factor, but I think there is another reason.  Hats.  A man’s head doesn’t seem to be too picky about the type of hat.  Baseball cap, cowboy hat, helmets, or hard-hats.  Pick your poison. 

There is theory that the hair trouble comes first, so to hide the trouble, men put on a hat.   This article from hairfinder.com is a prime example of that.  http://www.hairfinder.com/hairquestions/caps_hair_loss.htm  An excerpt from that article says, “I think one of the reasons many people have come to believe that hat-wearing is connected to hair loss is because many men who are losing their hair favor hats to hide that fact. They wear the hat because they’re losing their hair, not the other way around.”   

Others believe it is only partly a contributing factor.   This article from wikipedia.org appears to lean toward that idea. http://en.wikipedia.org/wiki/Baldness   Here is the belief in this article;

“”Tight hats cause baldness.”

  • While this may be a myth, hats do cause hair breakage and, to a lesser degree, split ends. Since hats are not washed as frequently as other clothing, they can also lead to scalp uncleanliness and possible Pityrosporum ovale contamination in men with naturally oily scalps. Some scalp infections, if left untreated, can cause hair loss.”

The latter article has quite a list of reasons people think cause men to go bald.  A rather crazy list in fact.  Here is one of those reasons; 

“”Frequent ejaculation causes baldness”

  • There are many misconceptions about what can help prevent hairloss, one of these being that frequent ejaculation may have an influence on MPB. Depending on frequency, it can raise or lower plasma testosterone.[33]

I don’t know that much about testosterone to be honest, so I won’t argue with that. 

Back to what I’ve observed over the years.  The men that I’m referring to, have worn hats for a long time.  Before they even had a glimmer or shine to their head.  Now one could say, that the bad genes are causing this issue for them.  Although, I just can’t quite buy into it for every case.  Have you ever noticed a man who is significantly bald and wears a hat, has hair all around the hat…just not under it?  It’s a perfect fit.  How about someone who has worn their baseball cap backwards for years and years?  Not bald, but badly receding.  Now someone who has worn a hard-hat for a lot of their working life…what do you notice there?  Thinning hair.  My husband once developed bald spots in his facial hair where the chin strap from his helmet (military helmet) rubbed.. over the course of a deployment.  It took a couple of years, but it eventually grew back.  Maybe you’ve noticed or have experienced yourself, that jeans rubbing consistently on your shins over an extended period of time causes you to have balding or areas of thinning hair on your shins. 

Another thought of mine is about how this hair loss issue affects men more often than women.  Women do wear hats, but it seems to be less often.  The women I’ve known have worn hats for various reasons.  Either they have to for work, it’s an accessory to an outfit, when playing a sport, or a hat is desired while they participate in other recreational activities.  However, it’s less likely that every time I see these women, they’re wearing a hat.   Unlike the men I’ve known for years.  Another point I have to make is, the guys I’ve known for a long time and barely ever wore hats…apprear to have all of their hair intact.  Those are just a few observations I’ve made on the topic of hair loss.

Just to make myself clear, I’m not a hat hater.  I like guys in hats.  It’s something I noticed and thought I would share.  I’m not an expert, but from what I’ve seen, the evidence is clear enough to me.   Here is website called baldnesshelpline.com which is dedicated to the subject.    

So, what do you think came first…the hat or the hair loss? 

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.