Wednesday, July 24, 2013

All That It Is

Phrases like "extra-articular manifestations" are the reason I don't typically research medical stuff online.  About a month ago, after several weeks of sometimes fleeting, sometimes constant, pain under my ribs (which, thanks years of being an exercise fanatic, I knew wasn't muscular), I casually mentioned it to Sean.  After a few pointed questions, he said, "Hmm, sounds like pleurisy.  I think people with RA get that sometimes.  We need to mention that at your appointment."  I was so grateful he was able to come to the doctor with me because I really didn't want to go, for all the reasons mentioned in my last post.  Normally I don't care much, but this time I felt like I really needed him to be there, and he was.  Nothing was really surprising.  She confirmed that yes, it was probably pleuritic pain related to RA.  And I had already expected to be told that it would be a good idea to go back on the Enbrel.  As much as I want off of everything, I can't deny that it worked, and I can't continue to ignore that more joints are starting to be affected.  And while pleurisy in itself is not usually serious, it serves as a rude schooling in what "systemic" really means and a reminder of the scope of what it is to have an autoimmune disease.  So, I'm stuck on Enbrel for at least a full year because the wheels came off the bus when I threw a hissy fit asked very politely to stop early.

As I'm coming to terms with the fact that it's so much more than just bad wrists, I can better sympathize with the scores of patients who have been trying to explain their conditions to well-meaning family and friends.  IAAM/WAAD has promoted their "Start Talking" campaign with this in mind.  Lots of people feel that including "arthritis" in the nomenclature is confusing to those who equate it to the better-known, more common osteoarthritis.  I've experienced this myself: being told by someone very close to me, "I don't understand what the big deal is about arthritis."  That stung quite a bit, especially since I go out of my way to try not to make a big deal out of it.  Not to be misunderstood, I don't think there's anything simple about osteoarthritis either; my grandmother's knees landed her in a wheelchair.  And I have a very good friend who thoughtfully mused out loud, "You know, I sometimes forget how serious this is because you don't look sick."  She's right, I don't, thank goodness, and I don't consider myself to be "sick."  But there was something about finding out it was also affecting my lungs that made me realize that I hadn't really done a good job explaining what it is to my inner circle.  IAAM uses the phrase "It's autoimmune arthritis" to help make the differentiation, and while clinical and technical terms have never been my strong point, I know what it is to me on a day-to-day basis.

It's listening to your doctor say, "I'm sorry" when she gives you the diagnosis.  It's having to go to the store to buy a pill box and being embarrassed when you check out.  It's prednisone, methotrexate, folic acid, and Enbrel (or Humira or Remicade or Orencia or Xeljanz).  It's absolutely hating those meds, but being so very thankful they exist.  It's despising the commercials for them.  It's alcohol swabs and autoinjectors.  It's nausea and sometimes it's vomiting.  It's drug toxicity monitoring.  It's struggling to accept this is never going away.  It's holding onto irrational disdain for Phil Mickelson.  It's not giving a shit if he won the British Open because, honestly, it's just not that freaking easy for most people who are on biologics.  It's staring at your three month supply in the fridge and thinking everyone deserves easy access to treatment and care.  It's seeing a PSA for autoimmune research at Johns Hopkins during a Yankees game and wanting to jump in the car that very second, drive to Maryland, knock on an office door, and beg to be part of a trial.  It's swallowing your pride and letting your eight year old pour your milk for you.  It's your husband asking, "How are you feeling?" in a way that is... different.  It's looking into the same set of green eyes you've loved for the past 21 years and knowing this is hurting him too.  It's being so very tired and being told, "No, Lori, that's not normal, no matter how many kids you have."  It's wondering if the continuously sore, sometimes swollen lymph nodes mean something ominous but being afraid to call to ask.  It's the mortality gap.  It's having to hit the emergency stop button on the treadmill after only a few short minutes because the worsening pain under your ribs has taken the wind right out of you.  It's wishing your doctors knew the other you, the one who could swim 3000m without stopping and walk outside and run 10 miles anytime she wanted to.  It's being worried that you will slow down your family while on vacation.  It's reluctantly giving up some PTO responsibilities because too much is uncertain right now and you don't want to disappoint anyone.  It's wondering if you're going to be able to keep up with the crazy two year olds you teach and adore.  It's not knowing what to share, with whom, or when.  It's waiting 7 months to tell the director at the preschool because you don't want her to ever doubt that you can do your job.   It's being aware that, even with all the great medical advances in this specialty, some patients still become disabled, and it's harboring a secret fear that it could happen to you. It's learning that the vague symptoms you lived with for years, but never pieced together, were part of an illness that was responsible for some of the most emotionally difficult times of your life.  It's being so angry at RA because you will always grieve for those babies you never got a chance to hold.  It's wishing you knew then what you know now.

But it's also a lot of really terrific things.  It's heightened gratitude for all the other ways you are healthy.  It's your husband wrapping you in his arms, kissing you on the head, and saying, "Don't worry, we will take care of you."  It's having a life partner who is willing to move mountains so he can be at important appointments.  It's his endless supply of patience.  It's being thankful that the hand surgeon who has been on this journey with you since the beginning is also a runner.  It's being thankful that your rheumatologist is too.  It's appreciating everything those two have done for you and continue to do.  It's trusting them implicitly because you know they really care.  It's being on a first-name basis with the nurse who gives you genuine hugs when you come into the office.  It's being able to giggle when your six year old says that all the scars on your wrist make you look like Frankenweenie.  It's kneeling to take of wash out of the dryer, realizing it was effortless, and smiling because you can tell the medicine is working.  It's remembering that feeling and making peace with going back on the shots.  It's also being a little bit happy Phil won because that means Enbrel worked for him, and hopefully it will work again for you too.  It's knowing that, by and large, the use of biologics has changed everything.  It's having faith that remission will happen for you.  It's having a wonderful friend who knows a lot about lymph nodes take the time to call you at 9:00 at night and put your mind at ease. It's being thankful for supportive family members.  It's loving those friends who force you into talking when you don't really want to but they know you need to, and equally loving those friends who you know care but will never mention anything to you in person because they know it makes you feel uncomfortable.  It's knowing how lucky you are to be able to be able to get on the treadmill and into the pool in the first place.  It's believing you will do that 70.3 tri you've been wanting to do for the past three years, and while you're at it, you're going to do a marathon too.  It's having another friend offer to ride 56 miles tandem with you so you can do that tri while she steers the bike.  It's keeping a full Ironman on your bucket list because you know your endurance is your strength.  It's an online community that understands everything.  It's those who have done their service to awareness by making the decision to share their experiences publicly, and in turn, inspiring you to do so too.  It's knowing that there is so much more about your life that is utterly fantastic than there is not.  It's being able to honestly say you are happy.  More than anything, it's looking at your four children and thinking maybe you can convince the left side of your brain to believe in miracles.

Thanks for reading!
~Lori

8 comments:

  1. Great post. I shared this with a few friends as you explained what having RA is like in a way that I often have a hard time doing. It's always nice to see we are not alone!

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    1. It is nice. So glad to hear it was helpful to you. Be well. xo

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  2. It is very frustrating when those that do not have autoimmune arthritis, do not show empathy. I get that quite often and I am expected to be 'normal'. I do the best I can though I am different and that needs to be understood, sadly it is not but most.

    I am glad that you have such a supportive husband, cherish that bond.

    You WILL do that 70.3! I know you will and I will be your cheerleader wen you do!!

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    1. Yes I will! And one day maybe we'll be at a tri together! :-)

      You do great things, Angela. So glad to "meet" you. xoxo

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  3. Now a follower!!!! Saw your info on Living With RA on FB

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  4. I love your blog. And am now a follower. I feel like I could have written it. I go next week to finalize plans for a total knee replacement. I am 56 . I now realize that I have had RA since my early 30s. All those trips to the Dr and no diagnosis. I am sero-negative. Thank heaven for the Vectra test. My RA activity is in the high moderate to low severe phases even on Enbrel and Orencia. Work full time....trying to have a life. But RA makes us choose what is REALLY important to do and what we would like to do but could live without. Social functions are moving down the ladder on my list of priorities. Some understand....some don't. I cant worry about it. Until you walk a mile in my shoes......

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  5. excellent, excellent, excellent.

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