Tuesday, July 21, 2009

Just when I need my friends/family the most, I get reclusive.

Hello all. I know it's been a really long time. I started this blog with the hope of finding people who are on this crappy chronic pain journey, and helping them through it. I don't know why I thought I was suddenly the teacher and not the student. There is always more to learn. Perhaps if I share the downs with the ups, it will help even more. Because I'm in a real down right now.

As I've mentioned, most of my pain is centered in my back and legs. All of my joints hurt, but it's mainly the lower body. So I blab on and on about never taking your legs for granted. Well, about 6 months ago, My right elbow started hurting A LOT. The pain progressively got worse and worse, as I chalked it up to RSD spreading again and making me miserable. But this was different, this was my arm. What does someone confined to a wheelchair do when they lose the use of their arm? Damned if I know! So I panicked. If in doubt, roll up in a little ball and cry in fear and frustration.

Okay, I'm done doing that now. I didn't get much accomplished, but I do feel better now, so maybe I needed that. And what's crazy is that, really, my arm pain turned out to be good news. It turns out that my ulnar nerve is compressed in my elbow. It isn't the RSD (yet) causing all of this pain and numbness. That's great, because then it can be fixed! I go in for surgery on August 5th. There's the rub for me. I'M JUST SO SICK OF SURGERY!!

When I first started out, I could tell you every operation, every procedure, every medication. 16 years later, it all just blurs together into a big, long mess of pain and disappointment. I lost count of surgical procedures after about 30 .... I'm just so done. And yet, I feel like every time "they" run another test, "they" find something else wrong that has to be fixed - by cutting me open AGAIN. "Just close with zippers or Velcro for crying out loud. You know you're going to open it again anyway. Ziploc gets it done!" Surgery sucks. During my depression years, when I was so sick, I was in and out of the hospital so much - including one 5 week long stay - that I would get physically sick to my stomach just driving past the hospital. It really is miserable.

Well, I pulled myself together, realized how much attitude had to do with healing and being "healthy," and I haven't been hospitalized in a long time. Well, with one little operation pending, all of that crap comes right back up again. Here I am, the tough kid who's been doing this for 16 years, who has enough answers that I start a blog to help "newbies," and the thought of another operation can send me tumbling right down again. Lesson learned - just when you think you have it all under control, life hands you another curve ball. But ... I'll get through this too. I will!!

And why is it that when I take a fall, instead of reaching out to my friends/family/loved ones for the support they want to offer, I get reclusive? Why do I do that? Do any of you all do that too? I brag about having some wonderful friends who I know I can turn to, and yet, when I need to vent and cry and be really really scared, I do all of that alone.

Oh well, there it is.

24 comments:

  1. As some of you who are regular readers of Judy's blog know, I'm Judy's mom, and I have a message for those of you who are friends, lovers, relatives of someone chronically ill or in pain. Don't give up!!!
    Sometimes folks in situations like hers need help, sometimes space, sometimes ears for venting. Be there for them.
    Although we all have the need to "Fix It", sometimes we can't. So be it.

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  2. Thank you mom. I wish all caregivers understood how very needed they are, and how very much we appreciate the comfort they give. Without that support, this journey would be near-impossible.

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  3. Can't run me off, sweetie - you ain't big and bad enough, and I've got too much love for you.

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  4. I just want you to know.. I do the same ting and It is so hard not to give up. But keep fighting.

    Donna

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  5. Judy, I am so thankful to have met you through Elizabeth's bible study. I know that there is a reason we were both placed in that study. I am so sorry for all the pain you have and are going through. I understand or at least can sympathize what you are going through. I took have chronic pain and days where I can't walk. Life for me has totally changed. I hope you have a wonderful weekend. If you need anything I am always here for you.

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  6. Judy, it is wonderful to meet another survivor of chronic pain who has taken to the internet to help her brother's and sister's suffering also! Thank you so much for sharing your beautiful blog! I hope you don't mind but I posted it on my feed so that all of the friends on my friend's list could read it!!

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  7. Judy. Me too. Lot's to read here. I'll get started.

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  8. I hope you get something from my ramblings JT. At the very least, know that you are not alone.

    I truly intend to get back to this blog soon. I lost my own way for a little while. See, we who think we've been there and seen it all get bogged down sometimes too. I've been doing this "chronic pain thing" for almost 20 years, and I too still have moments when I am just so angry and depressed at all that I've lost. I think that's normal; nobody would choose this life. But some times are harder than others. It's actually the side effects of both the RSD and the long-term use of all of these medications that are hitting me the hardest these days. The pain is hard enough, but add to that a broken internal thermostat (I am so hot and sweaty all of the time!!!), migraine headaches, and all of the other crap that we cope with, and sometimes I'm just overwhelmed and exhausted.

    I somehow felt that if I wasn't doing well, I had no right to write about my journey in this blog. If people are going to read what I have to say, then I have to be on top of it all. But perhaps my travelings through the dark times have validity too. Apparently I'm still on the journey - we never get "there" do we. I don't think there is a finish line where we're "done"; we have now learned how to cope with chronic pain and all that goes with it. The heavens open up, we get our gold medal, and the rest of life is easy. Nope, just doesn't work that way! It's a life-time journey with ups and downs, and we learn from both. I just don't like the learning on the down side! =D

    Come back and share anytime JT!

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  9. I am with you on the dark/downward side - I started my own blog today hoping to find some sort of peace while dealing with so much pain. I have a wonderful family lots to be thankful for but fighting pain everyday starts to diminish even the strongest of minds. I am a fighter and my motto in life is to just push through it - and I always have - until the last 7 years and mainly the last 2 1/2 - the struggle is so hard and continuous - I think if I cld have an occasional good day maybe I would do better but I don't - at least not yet. So I am trying to hold on to hope find some smiles in my children's eyes and push through each day .. I hope things are brighter because living 20 more years like this doesn't sound like fun. Hope your days get brighter. a new friend indeed ..

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  18. So sorry to hear about your situation. Years later, I hope all is well. Chronic pain is tough. There's nothing worse then living in pain every day of your life. Remember, you have a lot to live for. I hope you've found relief from your pain Judy.

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  19. I am so tired of the feeling of pain all of the time!! I know exactly what it feels like the night before surgery afraid and uncertain. What are some good suggestions on how to deal with the constant pain?
    -Jesse White| http://www.backneckrehab.com/

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  20. I am sorry to hear about your circumstance. I hope that everything is doing well with you and have found a better way to manage the pain. - Jennifer

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