My Diagnosis Of Rheumatoid Arthritis: Four Words That Changed MeMay 23rd

Its funny how all the life changing events are so concise, so brief in nature. Usually they consist of four words or less:

“Can we be friends?”

“You’re suspended.”

“Your dad was fired.”

“Your grandma died.”

“Will you marry me?”

“I do.”

“I’m pregnant.”

“It’s a girl.”

“I love you.”

“Congratulations.”

“We’re sorry to inform…”

“We’re pleased to announce…”

These statements mark life changes. Thousands and thousands of thoughts, emotions, events. But it all happens so fast, and then we take forever to remark on it. We turn it over and over. Savor it. Hold it–maybe sometimes reject it.  I’ve had all these moments happen, and my fill-in-the-blanks are just as poignant and transcendent as everyone else’s. And there’s always more, right? I’ve lived such a short time but I do know from people much wiser than I that this is the way it goes.

The other day I received one of those life-changing-statements and the first thing I thought was how horribly concise it sounded.

My doctor walked in the room, threw a quick glance at me, and then said,

“You have rheumatoid arthritis.”

It took me a few seconds to realize that he was giving me a diagnosis, and not just saying hello in another language. I even had the idea to laugh at how terribly awkward he was for waltzing in the room that way. Or, perhaps waltz is a poor word choice. More like marched in like a little wind-up toy. My Granny had a set of wind-up teeth that chattered. I felt like his words were about as disjointed as those teeth were on the countertop.

Anyways, I’m not trying to be dramatic. Really, I’m not. But when someone saunters in in a lab coat and changes your life in four words, you have to sit and think about it.

After the initial shock, and sadness, I was glad to get my diagnosis. I’ve felt like a crazy women since December, and it was sort of validating to understand that the nonsubjective lab test revealed an actual, tangible problem.

I had a doctor tell me a few months ago that “Everyone has aches and pains, maybe you’re just depressed,” and I have a good mind to take my labs over to him and shove them in his face.

Now I have a reason for the out-of-the-blue carpal tunnel (yes, they were caused by RA), the aches, exhaustion, and everything else that goes with it. I’m starting medication this week and supposedly it will freeze the damage where it’s at and won’t allow it to progress any further. I’m fortunate because so far there is only damage in my hands. If you wonder what I’m talking about, Google RA and look at the images–hands are usually the first thing to go, and mine aren’t nearly as bad as the images that will pop up.

So here I am: shocked that I have a disease, thankful its not cancer, and apprehensive about the medication that is supposed to arrest this scary thing.

You know those commercials for different medications that start all negative and then become really positive towards the end? Like, the woman who is so depressed that she can’t make breakfast for her daughter, and then by the end of the ad she is blowing dandelions in the wind? Well, what they don’t want you to notice (as she goes from miserable to elated) are all the side effects. Side effects that make you wonder if just staying miserable might be better than losing your lung, or going blind or something.  Apparently there are some brilliant side effects with my particular drug of choice (actually, not choice). I’m concerned about things like liver damage and lung infections–and while we’re at it vomiting and mouth sores. It all sounds yucky, but I may not even have any of these reactions so I need to just get over it.

This post has reached the point of ranting, and you may say, “Go ahead. You need to vent.” But I’ve already talked about all this stuff to my family and close friends, so it’s a little overdone to continue it on the blog. On the other hand, if I start having interesting stories about vomiting, I wouldn’t want you to get the wrong impression and think I’m pregnant. That is one HUGE no-no with this stuff. I cannot get pregnant for a while (which is fine, cause I’m more than content with my babies for now, plus I’m scarred from my natural birth).

The other absolutely horrible, rotten, no-good thing about this crud is…

It’s hard for me to even type this, given my affinity for the stuff

I can’t have caffeine.

WAAAAAAA!!!!!!!!

Although I’ve been weening myself off the stuff, today marks the first day of not having any AT ALL. I don’t know how this will work. I have a few ideas on how my day will play out, but I don’t think it’s a very positive thing to share.

So you see, those four words have very much impacted my life. I suppose they affect the rest of my life, as I’ll probably have to be on medication for a very long time. There’s no cure for RA, but I’m still harboring some hope that I won’t have to take pills the rest of my life. That is just too overwhelming.

If I’m still alive after a day without caffeine I’ll try to let you know how it goes. Thanks all, for reading and keeping up with us on everything. I know many of you have prayed for me and my family–we appreciate it more than words can say.

Cheers.

19 Responses to My Diagnosis Of Rheumatoid Arthritis: Four Words That Changed MeMay 23rd

  1. ~Maggie~ May 23, 2011 at 7:35 pm #

    No CAFFEINE?!?! :( I'm sorry, friend. I have osteoarthritis in my hips and ankles, but I can't imagine what you go through. Just know that we love and admire you! Prayers.

  2. kirstykaree May 23, 2011 at 7:50 pm #

    I love you sis! You are amazing.

  3. Ali May 23, 2011 at 8:32 pm #

    Wow! I'm so sorry!!
    I have a good friend who had the same diagnosis after her 2nd child about 6 years ago. I watched her struggle with it too and know it's tough! I do know that she struggled with meds and finding something that worked she finally switched to a raw food diet after talking with a lady from our church with health problems too. I know when she is on a raw diet, which isn't easy, she feels really good and her pain is really low. I dont know if that helps or if you've thought of that, but it might be worth looking into. I can even get you in touch with my friend if you want to hear from someone who has and is going through it too. She is super friendly and very helpful. Let me know 😉

    I'll be praying for you!!!

  4. CandaceHayes May 23, 2011 at 9:19 pm #

    Oh Hill, I love you. You are a strong strong woman. I'm praying for you always. Hang in there…

  5. CandaceHayes May 23, 2011 at 9:20 pm #

    BTW your new background is adorable!!!

  6. Margo May 24, 2011 at 3:22 am #

    I love the way you can express yourself – even in the midst of hard circumstances. And I know God will glorify Himself in and through you on this new journey. PS – sent you an email article just now on caffeine and your med.

  7. hilljean May 25, 2011 at 4:28 pm #

    Thanks all! I think caffeine is the worst part about the whole thing :0 I was probably way too addicted anyways. I appreciate the encouragement! Will definitely keep you all posted :)

  8. KLZ May 25, 2011 at 7:26 pm #

    I honestly think there should be tests in bedside manner to pass medical school. Really I do.

  9. Rissa May 25, 2011 at 8:48 pm #

    Oh Hill, I know you have probably exhausted talking about this but you forget all of your followers that love every word that comes to this page. A. I will pray for you through this no caffeine thing, what a horrible tragedy. B. I am thanking God you still have your hands and that you can pick up those cute kiddos. C. Praying that God is big enough to reveal this at a young age to it treated early. D. Your hands will be stunning in Heaven. Love you, twinkie.

  10. Dagmar May 29, 2011 at 7:21 am #

    I'm so sorry you got this RA diagnosis. I really hope the medication will work and stop this in its track. It seems like you have a very positive attitude about this and I hope you will continue to think this way. Your attitude is the only thing you can control in situations like this.

    Sending healing thoughts,
    Dagmar
    Dagmar's momsense

  11. hilljean September 12, 2012 at 1:48 am #

    I've just recently found your blog, which is wonderful by the way, and read this post about RA. I have Stills Disease which is very much like RA with a few super fun perks like random fevers and rashes. Onto my point…NO CAFFEINE?!? I have never subscribed to this craziness as I could not live with out my daily coffee and/or one soda! Why oh why did you have to give this up? Was it med related? I've done a ton of research on RA/Stills Disease and dont remember reading that – or did I block it out?

  12. Lauren November 14, 2012 at 1:03 am #

    I have RA as well and was diagnosed in 2005. In the summer of 07 I started a diet…well a lifestyle of eating differently. Within a few months I was completely symptom free and off ALL of my nasty horrible medications. I know many people w/ RA who’ve had similar results. It acts up when I eat a ton of sugar, caffeine, don’t sleep, am stressed, after I had my baby and my hormones went crazy, etc, but it has completely changed my life. I would love to email more with you about it if you are interested. I got help through a nutritionist out of WI (you can do everything over the phone) and I only worked w/ her for a few months to learn everything and now I do it on my own. If you choose to work w/ her….a word of warning…she has horrible bedside manner/empathy, etc. But her suggestions did change my life and I’m grateful for that. Here is her website: http://www.karenhurd.com/ Best of luck to you!

    • hillary November 14, 2012 at 2:35 am #

      Wow! Thank you for all your helpful information! I will definitely look into her website. I tried the holistic approach for a while and just didnt see any results (plus life was pretty complicated and it was so time consuming). I am interested in trying it again—just a little scared :) I appreciate you passing on the info!

  13. Keiko January 26, 2013 at 4:18 am #

    Hi! I came across your blog post “20 Mommy-Daughter Dates” and absolutely love the list you created and cannot wait to try some of them with my daughter. As I was reading through the rest of your blog, I stumbled across this post. I am sorry about your diagnosis. I have always been into nutrition and fascinated with what whole foods can do for us. I too read that eating a wide variety of fruits and veggies can help with RA. I recently discovered this product that is completely whole foods nutrition. Have you heard of JuicePlus+ (http://www.youtube.com/watch?v=cbVdoNZN42M&list=PLC3386EAEA57BA722&index=1)? Its not a drug, vitamin or of that sort. It is simply 17 different fruits, veggies and grains in a capsule. I would love to share some info of what I learned with you and some of the success stories from others who took it for their RA. I have my whole family on it just for its health benefits. I usually wouldn’t do something like this but I listened to a representative, a couple of months ago, who has RA and how JuicePlus+ has helped her tremendously… I don’t think there was a dry eye. I feel like I at least need to share of its existence (if you haven’t heard of it yet) if it at all could possibly help. Her story was so moving that I can’t help but bring it up. Would love to hear back from you to discuss more (keikofx@gmail.com)! And thank you for sharing your story. You may not realize it, but you are an inspiration to others!!

  14. Genevieve April 24, 2013 at 5:40 am #

    I’m not sure where you are getting your information, but good topic. I needs to spend some time learning much more or understanding more. Thanks for great info I was looking for this information for my mission.

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  16. Chris Keen October 23, 2014 at 1:59 am #

    Hi Hillary,
    I came across your blog by chance, but was moved to read on because I have lived with RA since 1974, making October the 40th anniversary. In this time I have had a career teaching children with special needs, married and brought up two children and two step children. Things were not always easy, BUT also NOT always difficult. You need to know this. It is not a death sentence.
    I retired some years ago and worked for UK’s leading charity for RA-Arthritis Care (based on US model). I lectured on managing pain, etc. Everyone that worked for the charity were diagnosed sufferers so we spoke from experience. There are as many responses to your disease as there are people who have it. Find what suits YOU, not some cure all diet or exercise regime.
    I am now applying all I learned to fighting breast cancer. So far so good. Stay positive and keep laughing and loving life, all the best xxx

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