The Never Ending Story & Viking Lemonade

Have you ever seen The NeverEnding Story?  I saw it at the theater as a child with my Grandma (who turns 79 today – love you Grandma, happy birthday!); it’s been one of my favorite kid movies ever since.  It’s also a great place to start my blog today, since after yesterdays rheumy visit I feel like this whole thing is a never ending story.

Very often this chronic journey feels like a trip through the Swamp of Sorrows.  Most days I’m Atreyu, fighting desperately to overcome the fear, discomfort, and gloom of the chronic pain swamps. Like him, I am determined, steadfast, and successful.  Once in a while though I’m Artax; I have a brief relapse into the apparent futility of it all and just want to toss my hands up in the air and sink into the swamp.  Yesterday, for a short while, it was an Artax day.

The Lemons

I went into my rheumy’s office for a six week follow up with a sense of trepidation.  My recent cocktail of meds (weekly Humira shots, Methotrexate, and daily Prednisone doses w/ a Tramadol or two on top) did not seem to be working very well.  My hands and feet have been the worst; I don’t even like looking at a pair of shoes, because it hurts to wear them – and my hands have been aching to the point it’s hard to do anything like cracking an ice tray or opening a jar or pill bottle.  When the nurse took my pulse it hurt when she squeezed my wrist lightly.  I was in fact in more pain over the last several weeks then I had been in some time, and I was afraid of what a new medical arsenal might entail. I’ve made my way through all the DMARDs, so I feared a switch on the biologics, or even a move to infusions over injections.  The Humira has helped, and I don’t have any bad reaction to it – which is more than I could say for most of the DMARDs I was on. At any rate, I am certainly well past exhausted of the prescription merry-go-round, and working hard to not be completely discouraged.

My rheumy (now dubbed Dr. M) came in and sat down and began feeling the joints in my hands, asking me how I’d been.  He mentioned Dr. L (my psychologist for pain management) had called him and told him I was less than honest about my pain levels.  I knew she was going to call him, and appreciated it; I have a very hard time admitting to pain, and have a tendency to downplay it more often than not.  I realize that’s counterproductive most of the time, but it’s the whole ‘whining’ issue I have going on, and not wanting to seem like that’s what I’m doing.  I’m working on it.

Dr. M looked over my joints, and after examination he said, “Well, your numbers are actually looking really good.  There’s also little to no swelling in your synovial lining. We don’t want you in pain, but I don’t think the pain you’re having now is related to the rheumatoid arthritis.”

I might as well have been slapped in the face, because it would have been less of a shock. What does he mean it’s not from the RA? It has to be from the RA, THAT’S WHAT IS WRONG WITH ME.

He said he wanted to check some other points, and squeezed my shoulders, shoulder blade area, and upper arms.  Each squeeze felt like a vice and made me ache.  He sat back down and said, “I think the pain you are having now is some type of myalgia.”

It was all I could do not to break down and cry right there. Oddly enough I was pretty focused on the fact it wasn’t my RA then the thought I had another issue.  The idea that it wasn’t my RA for some reason just really rocked my world.  I’ve been having all this pain, practically constantly, for almost 2 years now.  But the pain had a name, and I had been working SO hard to do what I could to address the problem.  I’d gone through medicine after medicine, some of which were pretty devastating in their own right. I’d attended classes, reached out to others, educated myself in what was happening and what to expect.  I’d accepted some horrific possibilities inherent to my condition.  After all that work, how could this pain not be my RA?

Dr. M said he was going to up my Methotrexate slightly.  He also is sending me to some uber-rheumatologist for a second opinion.  Fortunately for me one of the top rheumy’s in the country (so I’m told) actually lives and practices quite close to where I live.  Dr. M said when he has patients who don’t seem to respond well pain-wise to treatment with all the traditional meds he sends them to uber-rheumy.  He also added a new drug to the arsenal, Savella, which he said may help with the ‘myalgia’ pain.  He never came out and said the F word, and maybe that’s not the case; but if the pain isn’t my RA, something else is very, very wrong.

After my appointment I sat in my car in the parking garage and cried.  I thought of my blog, and my commitment to myself of staying positive, and all I could think was how I did not have the strength to find the positive at that moment.  I texted my boyfriend and my best friend the news, and started to drive home.

The Lemonade

The thing about lemonade is, sometimes, you need someone to squeeze the lemons for you.

Once I arrived home, I cleaned up around the house a little.  I chatted on the phone with my best friend Nicole (who called me repeatedly through the day to prop me up, as well as to chastise me for not letting myself break down some and release my disappointment), busted out a bottle of deep burgundy red nail polish (All Nighter was the name of the shade, woo hoo!), and popped in Beetle Juice in a feeble attempt to keep from collapsing in despair.  And then my Viking saved the day.

My Viking is my boyfriend, Alan.  In my life full of lemons (dating back well before my RA), Alan is my lemonade.  He’s half Danish, 6’3″, with long red hair, a beard and mustache, and all he needs is the little moose helmet and a pitchfork to complete the look.  Back off ladies, he’s all mine. I’ll have to tell the story of how we met sometime, since it’s a great story – but another time. :)

So I’m sitting there painting my nails, watching some of Tim Burton’s best work, when my phone dings with a text.  Alan was comforting me, giving me the hang in there talk, reminding me we will get through this, day by day.  And there it was – the lemonade.

:( Don’t give up hope baby.  I know it’s tough and it seems never ending, but take heart that the numbers look good and that would mean no disfiguration in the future.

How could I have missed that?  Yes, I still have a lot of pain.  No, the merry-go-round is not over.  But I have very little swelling in my synovial lining.  My RA is as close to under control as it ever has been, and that means less RA pain, and less chance of the devastating effects uncontrolled RA can have on my body, including the crippling of my joints.  Despite the fact that I still hurt, that is a major victory of sorts; one that I couldn’t see through my shock and upset.

If you don’t have a Viking, I highly recommend picking one up.

Thank you God for Alan and lemonade.

12 thoughts on “The Never Ending Story & Viking Lemonade

  1. I know the almost hopeless feeling of fighting one chronic condition only to be told that you have something else as well. Hang in there. You will get through this challenge as well. Sending hugs your way.

    • Oh, have so been through those seemingly endless visits of med adjustments, diagnoses, tests, more appointments….. Savella has been helpful. Hope it will be for you. Am so glad you have Viking guy.
      Honest, heartfelt post. Clearly a resilient woman.

      • That is incredibly kind of you, thank you. :)

        It’s too early to tell with the Savella, but I am hopeful!

  2. I am glad your numbers are looking promising. But the general pain all over sounds horrible. However, apparently the meds for FM work pretty well for a lot of people.
    I can’t imagine how tough it was to hear that there may be another dragon to battle… (and thanks for the Gary Coleman while he was still cute and pinchable). BUT, if you are on your way to not living a crippled life looking like a snarled old tree, I think a thumbs up is in order. By the way, my Whiners Anonymous phone line is never busy. I love you.

    • Thank you Em. :)

      I have a great amount of respect and admiration for those who have been physically ravaged by RA. Hands like that are hands that have endured through more pain than most can imagine; and while I hope to never have them myself, I think they are beautiful, and a living testament to the bravery and perseverance of a true survivor.

      You know you’re on my whine list, love you too. ;)

  3. My wife, Kim, started on this pain merry-go-round back in 2007. 18 months of doctors, specialists, and tests upon tests until she was eventually diagnosed with fibromylgia. She’s tried several different treatment options and finally settled on the Savella which has helped tremendously with her fibro pain. About a year ago she started with joint pain and breathing problems that led to her being diagnosed with RAD in October of 2011. Both of you are on almost exactly the same meds. She’s on Plaquenil (no side effects, been on 6 months), MTX, just started Humira (biweekly), Tramadol, Prednisone, and the Savella. Plus a litany of other meds to help with everything els. Anyway, my point in commenting is to say that first, the Savella has been very successful for her. Secondly, she describes her fibro pain as being all muscle related and her joint pain as being RAD related. She can tell the difference, not her rheumy. Also, her markers and labs have all been normal –Sed rate was a 1 at last visit — even though she has new joints being affected and an increase in pain and swelling. Just because labs are normal and there doesn’t appear to be swelling doesn’t mean that nothing is going on in your body. There is too much evidence that supports otherwise. Go to RAwarrior.com for more info.Anyway, hope the “super-rheumy” can help and hope the Savella works wonders for you. Glad you have a Viking.
    “Viking” Eric

    • That is encouraging to hear about the Savella being so helpful for her. I hope I get the same results, I could use a breather from the pain. :)

      Whether the pain is different or not is harder for me to determine. The pain in my feet is the same pain I’ve had for some time, which I always attributed to the RA since that was ‘what was wrong’. Some of the other pain feels different, but since it was typically still in the general area of my joints (though not concentrated deep ache pain like before, but more widespread if that makes sense), I assumed it just felt different because the different meds affected how the pain felt. I’m so confused now, lol.

      It hadn’t really occurred to me since my visit yesterday that just because the numbers are normal does not mean there is nothing going on; of course now that you’ve mentioned it I know that to be true; that there aren’t always ‘number’ indicators makes complete sense. It can be difficult to sort through it all on the spot, and I am still trying to work my way through processing the whole thing.

      SO glad Kim has a Viking too. In my experience your kind is far and few between, and I am so happy to know she has you!

  4. Aww dear! Does he think it may be Fibrolyamlgia? I had simliar problems…my numbers looked better, my ANA’s etc.etc. appeared to be controlled by my journey through MTX, and then on to Arava/Steroids. My rheumy suggested I try Lyrica for Fibromyalgia and it helped!! My cocktail mix (when I lost my insurance) was Arava/Steroids (on and off)/Lyrica/Narco. From what I have found out it is NOT uncommon for us RA peeps to move into having Fibro too. I know some people are on Cymbalta for their Fibro, for me Lyrica was SOO needed. I knew that day if I had missed a dose! Try it, hopefully it will be the LAST addition to your cocktail!

    • He did not come out and directly say so, he just kept using the word myalgia and then put me on a medication for Fibro. I imagine I’ll get more clarification at uber-rheumy.

      In reading up on it last night I discovered it was not uncommon either – the site I read said 20-30% of RA patients end up with Fibro as well. He wanted to put me on Cymbalta, but it conflicts with ANOTHER medicine I am on for ANOTHER disease (I’m starting a collection, at least that one doesn’t translate into pain though!), so he couldn’t.

      I’ll be holding out hope (but not my breath, lol) that the ‘myalgia’ is temporary!

  5. I’m so happy you have your viking. I know you’re frustrated with yet another diagnosis to consider, but multiple issues might need multiple forms of attack and this could turn out well. I hope the specialist appointment isn’t too far off.

    • Thank you, I hope so. :) The specialist is supposed to call me sometime this week to set up an appointment, so we’ll see. Maybe I can get in sometime in the next 6 months, lol!

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