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.

Germs and RA

     Germs are a major threat to anyone with Rheumatoid Arthritis.  Since we take immunosuppressant drugs, our immune systems cannot fight against germs the way people with a healthy immune system can.  

     The drugs suppress the immune system so it cannot attack the joints, thereby reducing pain and permanent damage.  If the immune system is suppressed, it also cannot fight other forms of inflammation, such as the common cold.  Anyone with a suppressed immune system is already more susceptible to any type of germ, and they will take longer to recover from an illness than a healthy person.  

     If you (you being a generally healthy person with a robust immune system) catch a cold, it might take about a week for you to recover.  You might take some cold medicine, perhaps stay in the whole weekend and rest.  It might be a slight inconvenience, and while nobody enjoys being sick, it's usually not the end of the world if you catch a cold from somebody.  

     If I catch a cold, I have to stop taking my medications, which will allow my immune system to fight the germs but also allow the pain and joint inflammation to return (possibly initiating a flare).  I may or may not be able to take cold medication to alleviate the symptoms.  I'll likely be sick for twice as long as a person without RA, because my immune system needs more time to fight back.  It actually is a major life disruption if I catch a cold.  I also have a greater risk of developing complications, such as developing bronchitis and taking over two months to recover (true story).

     Germs - immunosuppressant drugs = more pain/joint inflammation = feeling like major you-know-what 

     So how do people with RA avoid germs, pain and general misery?  First rule of remaining as healthy as possible: WASH YOUR HANDS.  All the time, every day, with soap and water, before you eat, after using the restroom, just keep your hands clean.  Seriously.  I carry a mini hand sanitizer with me everywhere and I use it constantly.

     Other germ avoidance techniques include, but are certainly not limited to: avoiding any person with a cough, a sniffle or a generally gross vibe; wearing a face mask over your nose and mouth (yes, you'll feel dumb); wearing warm clothing in a cold climate; opening doors with your mind instead of your hands; not breathing; and avoiding all people and public places regardless of how clean and germ-free they appear.

What does Rheumatoid Arthritis Feel Like?

     Rheumatoid Arthritis feels different for everyone.  The reason is because this disease affects each person in a different way.  It affects different joints at different times, is treated in different ways, feels one way during a flare and another way during a remission... the possible answers to this question are endless.

     So, I will try to answer this question in reference to my own experience living with RA.

     I think the easiest way to explain what RA feels like is to compare it to the flu.  The flu is like an extra mean cold that will knock you down and keep you there for several days, maybe a week.  In addition to common cold symptoms, you'll feel achy and sore everywhere.  You'll be so supremely tired you won't be able to drag yourself out of bed.  You won't be able to think clearly because your head hurts too much.  You can't sleep peacefully because you can't stay comfortable.  The flu makes you feel absolutely miserable.  And there's no medicine for it, you just have to deal with it until it goes away.

     Imagine living every single day with the flu (minus the cold symptoms).  That's what RA feels like for me.

     With RA, some days I feel very bad, some days I feel okay and occasionally I feel pretty good.  Sometimes I just can't, and sometimes I can.  Various factors affect how I feel each day, including stress level, medication effectiveness, side effects of medication, diet, amount of exercise, and even the weather.  It's an unpredictable and frustrating existence.  

     I would say that I always feel sick.  During a flare, I feel horrible, my joints ache and the fatigue is overwhelming.  I don't want to do anything because I know it will hurt.  It takes an enormous amount of willpower just to accomplish the basic tasks of daily living.  Some days I feel less pain and more functional and productive, and those are usually during disease remissions or when everything has worked together harmoniously to help me feel as good as I can.  But I never feel 100% healthy.