Tag Archives: Rheumatologist

I needed to see someone who looked like me.

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Wednesday, January 11, 2006

“Your x-rays still show no new bone growth on either foot so we can rule out a stress fracture.  Your bloodwork, however, was much more revealing.  Your rheumatoid factor is a 68; it should be less than 20. Your CRP and ESR are also elevated.  These results, in conjunction with symmetrical joint swelling in your feet and hands all point strongly to rheumatoid arthritis.”

Blink.

“I’m going to start you on several medications today.  Celebrex for pain. Prednisone is a steroid that we’re going to start you on a high level and taper you down.  This will reduce the inflammation while the other medications start to work.  Methotrexate is a chemotherapy drug.  It can have some pretty nasty side effects so we’re going to start you low and build you up to 8 a week.  I’m also giving you a combination folic acid and vitamin B to help combat the side effects.”

Blink.  Chemo???

“We’re going to do this for two months and then re-evaluate to see if you need a biologic.  How do you feel about giving yourself shots?”

Blink.  Giving myself shots?  For what?  I don’t even know what it is that I have. Please just let me get out of here.   

I’d never even heard of rheumatoid arthritis.  When I thought about any sort of arthritis, all I could picture were the elderly folks my church youth group would visit with at the holidays and my great grandmother.  I mean, think about it: that’s generally what’s shown in advertising. At the time, I had no clue that there were many types and that they could affect people my age.  

To make matters worse, after getting home from the doctor that day, I decided to “educate” myself on rheumatoid arthritis.  How, you ask?  By using the END ALL BE ALL most reliable and authentic source of all information in the entire universe: ye merry olde interwebs.  Needless to say, I was much better off “uneducated.” I had no idea at the time that there was such a general misconception of what RA is.  To this day, I see pharmaceutical ads on TV and in magazines that are just wrong.  Hello Enbrel ad from 2009- I shall never forget you. But at the time, I took them as fact.

So I cried for hours and then took my raccoon eyed self to the mall where I dropped $200 on the cutest pair of incredibly fugly orthopedic dress shoes.  I remember thinking ‘so, I guess this is life now. So long running.’ Then I decided my best course of action was to hide this from everyone and would continue to do this for over 2 years.

Let’s just say this was the worst decision I could’ve ever made a decision that made everything harder and based on my own uninformed ideas and leave it at that, ok?  

So, what does Rheumatoid Arthritis look like?

Specifically, Rheumatoid Arthritis was 26 on that day.  A friend, a daughter, a sister, a coworker.  Loves running, kickboxing, reading, dancing. Very reluctant to let go of any of these things. Very sensitive and self conscious when she received  a diagnosis that she didn’t think she was representative of thanks to horrible misconceptions.

Except that she was.  Right on the money actually.

Demographically, RA is 20 – 40 at onset and two to three times more likely female than male.  Rheumatoid Arthritis is an autoimmune disorder in which the immune system attacks joints.  It is chronic yet also very treatable through combinations of very strong medications with many patients (yours truly included) able to eventually return to almost normal.

Yet the arthritis the public generally attributes to ALL autoimmune arthritis conditions is osteoarthritis- the condition caused by wear and tear  from aging or overuse and the ONLY one where “just go take a Tylenol” may yield positive results. 

That’s frightening.

“Buckle Me Up!” International Autoimmune Arthritis Movement is an up and coming non-profit dedicated to helping those suffering from autoimmune arthritis conditions by increasing understanding and awareness through education, partnerships, and support.  We are trying to raise money to finance legal fees and startup costs associated with filing 501(c)(3) paperwork.  

I can’t imagine how much this would’ve helped me when I was newly diagnosed.  Having information and support and people to talk to would’ve made everything so much easier and less scary.  And believe you me, it was a very scary and lonely time.  

It would mean the world to me if you would visit www.bucklemeupmovement.com/donate to read more about this and to donate $1.

An Open Letter to my Future Rheumatologist

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Dear Dr. (insert your name here),

First and foremost, let me tell you that I’d so much rather be shoe shopping than rheumatologist shopping.  To put things in perspective, I’ve never gone shoe shopping and left with 5 vials less blood than I came with.  Rheumatologist shopping…different story.

I’m really frustrated.

I think I’m a pretty good patient.  I like to understand and learn as much as I can about my disease state, what exactly is going on in each joint affected, why certain bloodwork is ordered, how my medications work, different options for treatment etc so I can have informed discussions with you.  I do not believe in blind faith as far as medical care is concerned, especially MY medical care.  

In return, I do ask a few things of you.  I expect you to listen to my medical history, understand my goals, respect my concerns, and work with me to find a mutually agreed upon plan.  Specifically, I am open to resuming methotrexate if you are open to me not resuming it.  I’m not trying to tell you how to do your job or play games.  But I am telling you that I’ve had minimal success on it and I would like for you to look at my medical history, think about it, and see if you can come up with a better idea.  That’s all.  If you think it through and still think you’d like me to try it, sure, I’m game. I do realize that practicing medicine is exactly that: practicing.  

But I do ask that you practice- don’t just give me what you give all your other patients.

I don’t think I’m asking the world here and this is not just about methotrexate, although that is a sticking point with me.  I would just like your time and thoughtfulness before you stick me on any strong medication or other uncomfortable course of treatment that (let’s be honest here) you’ve probably never taken yourself and don’t have firsthand experience of trying to function with the side effects of in your daily life.

Here’s to hoping that the next one of you is better!

Three, Tres, Trois!!!

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Something curious has happened to me lately and I’ve been a little nervous to mention it for fear of jinxing myself.  Several months ago, when my health insurance was cancelled by my douchy ex-employer and I had to put myself on a craptastic emergency policy that covered only $100 per month in prescription medication, I made a decision to cut some dosages in half or more so that I could make it until my new insurance with my new job picked up.  You may have noticed in my meds tab that as of April 09 I was taking:

-1 Humira injection/week

-6 methotrexate/ week

-6 sulfazine/day

-4 Aleve/day

-Prednisone prn

Well, to make a long story short, I have been taking the following for the past month and a half:

-3 sulfazine/day

-1 Humira injection/ bi-weeekly

AND I HAVEN’T HAD ANY PROBLEMS.  In fact, my joints just may feel a tiny bit better right now.  Now, this was a decision made out of necessity rather than a consultation with my dr, although I did tell my dr I wouldn’t take the mtx anymore because it tore up my stomach so bad.  The Aleve was cut because I ran out and didn’t have time to go buy more.  When I did finally get more, I realized that I hadn’t taken it in a week.

I CAN’T REMEMBER THE LAST TIME I ONLY TOOK 3 PILLS A DAY!!!!  

I do realize that this could change on RA’s whim but for right now, I’m really excited.

New Way RA

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Go on over here and check out New Way RA, a great new resource for those of us who won the auto-immune lottery and for our loved ones.  This is an online talk show hosted by Deborah Norville, whose mother had RA, and features several chats with experts on nutrition, activity, the emotional side of it, and even career coaching.  I’ve seen the DVD and think it does a great job of breaking these things down in layman’s terms…..YAY for good RA PR. :)

To bring things somewhat current

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So, I had every intention of getting all this background story posted in like 2 days. But, thanks to our economy and some serious work drama, I got a tad bit sidetracked.  Sigh…

I guess I stayed on the same treatment plan for a year with some reduction in symptoms but not much.  I ended up having a pretty serious falling out with my rheumatologist, mainly due to the fact that his social skills never improved and the last appt when he walked in, didn’t even look at me, and asked me how my elbows were doing.  “Elbows?  ELBOWS? I wasn’t aware there was a problem with my elbows.”  That was the one time he actually made eye contact with me.  Perhaps I should’ve let him examine my middle finger, it started itching at that moment.

I found a new rheumatologist who is wonderful.  At my first appointment, she spent an hour with me.  She agreed that our end goal was to get me running again (which I am!) and to get me back into the pretty shoes I lust over (which I can wear in moderation if they’re not too high.)  She was pretty upset with my old doctor- he never ran certain blood tests that give indicators on how aggressive RA is and basically let me lose a year in treatment time by continuing a course of medication that wasn’t working.

I’m currently on a low dose of mtx (which I’m not thrilled with but I’ll do for now), sulfazine (basically aspirin and a low dose antibiotic), and Humira.  It’s going okay thus far so let’s all knock on wood!

Have some blood, why don’t you?

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When I was first diagnosed with RA, it seemed like everybody and their brother wanted a good gallon of blood from me.  They . test. for. everything. For the record, in case you’re curious, I can tell you that I’m not pregnant, do not have AIDS, do not have syphillis, do not have chlamydia, do not have herpes, do not have cancer, do not have lyme disease etc.  Want to know something funny….even knowing in 100% confidence that you don’t have syphilis BEFORE you take the blood test, you’re still like “awesome, I dodged that bullet” when you get the results.

Needless to say, when I first met the rheumatologist, they had a pretty comprehensive work-up already done on me. He flew in, looked at me, wrote some notes down, and left.  The nurse came  back in, gave me some prescriptions, and sent me on my way.  FYI: if your doctor doesn’t take the time to explain things, especially new medications, find a new one.  

I was put on methotrexate (mtx), more prednisone, folic acid, and vitamin b supplements.  (see bottom of post for what these are as well as what I wasn’t told about these that I should’ve been told.)  I spent the first month feeling like ass on a platter.  My feet actually got worse, I was covered in bruises, was totally lethargic, and I could actually FEEL when the mtx hit my stomach.  Weirdest, creepiest feeling ever.  I went back the next month for a checkup and they increased my mtx. This continued for several months and I continued to feel like ass although around month 3, the inflammation started to improve.

Methotrexate: actually an old chemotherapy drug.  It screws around in your bone marrow making you very anemic ergo bruising and lethargy.  Iron pills fix this.  The folic acid helps protect your stomach– you can also take calcium to do this.  You SHOULD be taking calcium anyway- see notes on prednisone.  BIG NOTE:  I am very vain so this is ultimately why I took myself off of it- it makes your hair fall out in higher doses.  

Prednisone: anti-inflammatory drug.  Makes you retain water and an appetite stimulate so get ready to pack on some poundage.  I got super fat at first on this.  (I am almost back down to my fighting weight- yay!)  I know, I know- I already told you though- very vain. Make sure you take calcium AND vitamin D with this- Prednisone makes it hard for you to absorb calcium while vitamin D helps with it.

How This Party Started

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It’s actually somewhat funny. 

In true AJ fashion, I was ticked at a boy.  After work one day (around Nov 2005 I think), I went to the gym to run it out on the treadmill.  I ran hard and longer than I normally did because for me, anger is quite motivating.  The actual running didn’t hurt but as soon as I got off the treadmill, my left foot was in serious pain.  “Great, now in addition to being a douchebag in general, I can blame him for breaking my foot.” 

Several days later, when the foot was no better, I went to the doctor.  He x-rayed the foot, couldn’t see anything, and advised me that it was most likely a stress fracture which would only show up when it started to heal as scar tissue formed.  I was given Lortab (woot!), told to stay off of it, and scheduled to come back in 3 weeks.  4 days later, my right foot started the same throbbing pain in the exact same spot.  A week later, I woke up to my left pointer finger swollen to the point it looked like a sausage.  Several days later, the right pointer finger did the same thing.  I literally couldn’t bend the fingers and started having problems opening doors.

When I made it back to the doctor, I was a mess.  He x-rayed everything again (which later proved to be quite useful- not many people have baseline x-rays of all joints affected from the very beginning to track erosions), took a whole lot of blood, and gave me Prednisone and diclofenac (basically super strength Aleve.)  When my bloodwork came back, my rheumatoid factor was through the roof and I was set up with a rheumatologist.  

Now, to remove all blame from said douchebag for THIS situation only, I had been having strange aches/pains off and on for several weeks prior to this.  While nobody knows the cause of RA, stress does seem to play a big role.  And the aches and pains started several weeks before when I found out my brother was being deployed to Iraq. And I have a history of severe allergies/asthma which cleared up in college and have since learned that having serious problems with one autoimmune disorder does predispose you to having problems with another.  So no worries, D- you’re off the hook too. :)