The Best Way to Support Someone Living with RA

     If you love someone who is living with rheumatoid arthritis, you may wonder how to support that person.  Do you offer advice?  Do you cook meals and complete chores or errands that are probably very difficult for her to do?  Do you take her out for a little fun or shopping or whatever activity she enjoys?  Do you stop by with flowers?

     All of those things are great, and I am sure they would be very appreciated.  However, the very best way to support her is to listen to her.

     Just listen.  No judgment, no advice, no words necessary.

     Truly hear what she has to say.  Listen when she needs to vent, to think out loud, to cry.  Provide your advice if requested, say some reassuring words if you know she needs them. Hugs are usually appreciated too.

    She knows there's nothing you can do about her health or her circumstances.  But you can always listen.  It's the best way to offer comfort and support whenever she needs it.

Prednisone: My RA Frenemy

     Ah, prednisone.  That effective yet horrible side-effect producing standard medication for inflammation.  It helps, but it also hurts.  This medication usually induces a love-hate relationship for those who must use it.

     If you are not already familiar, prednisone is a corticosteroid commonly prescribed to lower inflammation in the body.  It is often used for rheumatoid arthritis, and it is very helpful in controlling inflammation.  

     However, prednisone is not meant for long-term use because it causes serious side effects.  Long-term use is difficult to quantify when your body is constantly fighting inflammation, and patients can be reluctant to stop using a medication that is helping them feel better.  That's why prednisone is so devious and dangerous.  Side effects include bone loss, increased appetite, weight gain, moon face, insomnia, headaches, nausea, bruising, slow wound healing, moodiness, depression, anxiety and many more.

     My experience with prednisone has not been great.  It did help lower inflammation, but it also caused weight gain and moon face (my face became round and puffy) and exacerbated existing issues with insomnia, depression and anxiety.  It also caused bone loss, which now requires another medication to help rebuild bone density.  Lovely medication, isn't it?

     I took prednisone consistently for about two years before realizing it was causing problems or making existing problems worse.  I call this medication devious because the side effects are not immediately apparent.  Let's use bone loss as an example.  I couldn't feel my bones thinning; I only found out after a routine bone density scan.  It wasn't a good feeling to hear I have the bones of someone twice my age.  Now, thanks to prednisone, I have to take yet another pill for at least two years to help rebuild the bone destruction.

     While I appreciate the existence of an effective medication like prednisone to help treat RA inflammation, I don't like the price I had to pay.  I'm not currently taking this medication, mostly because I'm afraid of what else it could do to me.  Thankfully, I'm doing okay with other medications.  If I had to depend on it again, I can honestly say I would be very hesitant to take something so dangerously effective.

I'm Fine

     "I'm fine."  The most deceptive phrase I can think of (at the moment).

     I am certain most people have uttered this automatic response to the standard elevator/hallway question, "How are you?"  I am equally certain nobody thinks about the real meaning of the phrase.  It's just a common response to a common question.  No effort required.  

     Does the asker really care about the askee's reply anyway?

     The "I'm fine" response gives me pause because it is never true.  For me, the honest response is probably "I'm in pain and fatigued, under a lot of stress trying to figure out my life."  I am never "fine," but the phrase serves as both a mask and a conversation starter/ender, depending on the situation.  I can hide behind these two words because people view them so carelessly.

     I say it because it's easier than trying to explain RA, which can't be seen.  If I were to say I'm not feeling well, the other person would look for clues to confirm this, and likely ask more personal health-related questions.  If the other person can't see any indication of illness, he or she isn't going to take me seriously anyway.  So I say it out of courtesy and go on with the day, fully aware of the odd and misleading phrase.

RA Makes Simple Activities Difficult

     Rheumatoid arthritis provides certain guarantees, one of which is turning a previously simple activity into a difficult and complicated activity.  For example, grasping and opening a door handle.  I learned this one immediately, because the day I woke up with RA I could not open my own door. 

     I recall reaching for the round door handle, and stretching out my fingers was painful.  Attempting to wrap my fingers around the handle hurt.  I couldn't completely wrap my hand around the handle because my fingers were so swollen, and the pressure required to grasp and turn sent a sharp pain through my hand.  I struggled with the handle, making several attempts just to try and open the door.  I was kind of shocked that I couldn't do something that simple.

     My door handle was just the first lesson in simple-to-difficult activities 101.  Others lessons include holding a toothbrush, sweeping with a broom, cutting food and pressing buttons.  I am acutely aware of how much hand pressure and coordination is required for most of the things most people never think twice about.  I am always judging whether or not I can handle a seemingly simple task.

     At times, it is very frustrating.  I have often thought to myself, "come on, anybody can do this!"  However, that's not true for me.  I used to do a lot of simple tasks without thinking about it, like second nature.  Now, I estimate the amount of strength needed for almost every activity.  It's tiring, even draining, but it's necessary.  I am still learning to ask for help and rely on the support of others, which I am incredibly grateful for.  It feels ridiculous, though, to ask someone else to open a bottle of water for me.  I suppose I'm still working on being okay with not being 100% okay.

Where Are All the Great Phlebotomists?

     I've had a great phlebotomist take my blood once.  When I write "great," I mean he was kind and pleasant, kept me distracted the entire time and took my blood quickly and efficiently.  Above all, it didn't hurt and I didn't bruise.

     Just once.

     I remember he was an older African-American man, maybe in his mid-fifties.  He called me in and asked if he said my name correctly.  He talked to me the entire time, asking how I was feeling that day and if I come in often.  He sounded very reassuring and his voice was calm and confident.  I told him I don't like needles or seeing blood, and he laughed and said he'd never met anyone who did like those things.  He explained what he was going to do and promised it would be as quick and painless as possible.  Before I knew it, it was over.  I didn't even feel the "small pinch."  I told him this was honestly my best lab experience ever, and he was humbly appreciative (just doing his job as best he could).  He told me I could always request his service if he was in the lab that day, but I never saw him again.

     I miss that guy.  If I knew what lab he went to, I would go there and request his service every time.

     Most of my lab tests are okay, nothing exceptional.  As long as whomever I get doesn't hurt me and doesn't do anything obviously unsanitary or unprofessional, I'm okay with the process.  I do wish the process was faster, but I also understand the need to be 100% sure blood and names/birth dates/lab orders match and are taken correctly.  

     I have experienced two very bad tests, resulting in major bruising and painful draws.  I remember who those two phlebotomists were, and if I am called by them again I will request someone else.  I don't know if they made a mistake with me or they just weren't very good, but I'm not willing to risk that type of experience again.  My most recent test lasted at least 20 minutes because I got the inexperienced new kid.  I even had to remind him to do certain steps (scary, when you think about it).  New guys should have a mentor watching over them, don't you think?

     Three suggestions for phlebotomists:

1. Be kind and pleasant.  The process itself is unpleasant, so part of your job is to be nice.
2. Be great at drawing blood.  Be sanitary, be quick, be painless.
3. Be 100% accurate.  Check the name, check the order, check the labels on the vials.