Weaving my way around Rheumatoid Arthritis.

Come join the party.

with 3 comments


This journey gets stranger every day.

I don’t normally have headaches. But I’ve had a three-day migraine, followed by 3 days with no headache, then another three-day migraine, I’m now on day 4 headache free. I hope I’m done.

Four times this week, and once last, I also woke with a new strangeness. I was wide awake, could open my eyes and look at the clock and see things in the room, but couldn’t move a muscle. This strange paralysis lasted only a minute or two, but was very disconcerting.

Add this to the recent loss of my sense of smell, and the tremors I’ve had in my arms and legs for years and years, and the sleep disturbance I’ve had for longer than I can remember, and the migraine complete with auras, and the small white matter lesions that showed in my brain MRI, and the left foot drop (that causes me to trip) but happens only sporadically, and not often enough for the PT  to see it happen – even with an hour of me walking back and forth. And it all adds up to something that looks like my immune system, not content to attack my joints, has invited my nervous system to the party.

Last winter, I saw my primary care doc and the ENT for the smell tests and MRI.  The ENT doc said it wasn’t caused by something he could treat (structural, infection), and that it was most likely nerve related, because it was affecting both my smell and taste. We looked for other possible causes and did tests that ruled out Lupus. Since there was nothing else that we could definitively test for, I then shrugged my shoulders and decided I’d hope for the best – that I was in the 85% that never figure out what causes their sense of smell to diminish.

I’m still hoping, but maybe a little less optimistic. The symptoms are pointing more and more towards early PD, which is just another fancy way to say that my immune system is attacking my nervous system. Sigh.

Time to I shift my focus, and look at what I can enjoy.

My first rose of the season opened today. My daughter says it smells divine.

After a moment of sad regret, I realized that mourning for what is lost robs me of time I could spend enjoying what remains.

So, I will focus on drinking its beauty with my eyes and basking in the pleasure on my daughter’s face as she inhaled the scent, and be grateful for the present.



Written by wovensongs

April 13, 2012 at 7:37 am

3 Responses

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  1. First of all…thank you for your comment on my most recent post. For some reason, your words felt like they were mine, as if I spoke them. The more I thought about it….I think I have written the same words many times before – this shifting and changing….grieving yet again….accepting yet one more thing…moving on…making the best of what we have by finding the beauty in the present moment…. All good – yet so, so much work sometimes. I tire of it at times and wonder if it will all ever just become natural, second nature? Do you ever get used to it? That’s how I feel sometimes. It’s how I felt recently when my daughter and newborn granddaughter came to visit. I knew these diseases would have an impact on things…on what kind of grandmother I could be. But it didn’t sink in until she actually arrived and I found that I actually became ill when trying to “be” that which I just cannot be. Ugh. Shift….change….be grateful…
    I don’t think the sadness ever totally goes away. But I do think the duration of the visit becomes shorter…for the most part. I’ve been down the road, I’ve experienced finding the beauty and feeling grateful, and it’s real – so real it’s life or death for me. It saves me from the pain and hopelessness that, if left to itself, would simply be more than I can stand. Yes, it takes work to re-focus, to find our beauty. But when we find it – it is the very stuff that makes life worth living.

    Ours is a crazy life – living with chronic illness. Autoimmune diseases – those we have names for and those which still go unnamed – fill our days with unending assortments of symptoms and conditions. I too have all kinds of neurological issues. Most days I can just let things go and think to myself – well, it will either go away or it will get worse – and I just sort of wait it out. Some really frown on that (and understandably so as things can be very serious at times), but for me, I just cannot keep running to doctors every time something new pops up. Living with these things, especially the ones that decide to stay indefinitely, can be very discouraging. For me, I do okay for awhile, and then I find myself needing to mourn the loss just a little more. The change of seasons has this affect on me for some reason. But we move on. We allow ourselves these down times, take refuge in those that love us, share our journeys with each other and find our beauty. You help me do this. I hope I help you… This is what it’s all about. Because the answer is No, we don’t ever “arrive”. We never do get used to it. But it IS all about how we participate in the experience of this very moment – because in the end – it’s all any of us ever have.

    Bless you my friend.
    Peace to you.

    Theresa Johnson

    April 15, 2012 at 6:59 pm

    • Dearest Teresa,

      Your words mean so much to me. Your blog and you comments regularly touch my heart.

      This journey is so strange and the medical profession really know so little. Without the internet, the past two years would have been – harder, sadder, lonelier, more painful in many ways.

      Strange as it seems, I feel blessed to be sharing this journey with you and my other blogging friends. It is not a journey any of us would have chosen. But it has lead to a path I’m glad I am taking.

      Perhaps the best thing to come from RA is the strength, wisdom, humor, connection and love we find in each other.

      Stay fearless, my friend.


      April 22, 2012 at 5:15 am

      • I am so blessed, and so very thankful. Yes, these are the “best things”. And I, too, would not trade the path I am on for anything. It’s the good that comes from this journey – it’s the “stuff” that fills our life. It IS life.
        And no matter what, it’s worth the living.
        Love to you.

        Theresa Johnson

        April 25, 2012 at 9:10 am

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