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Coming clean: Losing my Denial

When I went to the doctor on Tuesday, I made a comment to the nurse who helped with my block that the I was hoping to be done with a lot of the pain, or at least have it stablized by the time I have to search for insurance. We both said "that would be nice", and that was the end of that. Until after the procedure when the doctor asked me if I knew my RSD was chronic. I said yes I did. He said he just wanted to make sure. Then we talked about the fear of it spreading to the other foot, which was something he brought up. He said I'm lucky that I only have it in my left foot and lower leg.

What I told the doctor was true. I do know that it's chronic and that there is currently not a cure for RSD. I know that some people do get it to go away, though, and that seems to have been what we've been fighting for. I've known that it may not happen, but only on an intellectual level. Now that I have heard it straight from the doctor, though, I can't go on denying that it's not getting better. Without the hope of things getting better, I'm not sure what to hope or pray for. I believe God could step in and do something about this, but I don't know if I believe He will. I have secretly prayed that he will step in. I have asked others, including people reading this to pray for things to get better. And I've even reminded myself that things do get better for some people.

I don't know how to handle this, now that the doctor has said it's chronic. I don't know what to do. He recommended two surgical options, but one (a sympathectomy) can spread the RSD and the other (a nerve stimulator that's implanted in the back) is going to be expensive, might not work and carries all sorts of infection risks from what little I've learned. I'm still gaining strength back from the last surgery. Do I really want to go through another one? Would it even work if I did it? Is it going to change my activities I can do? I just don't think I want to go down that road.

This is so hard. It's hard to admit that I was in denial. It is hard to know that there may not be an end to this painful road. It is hard to imagine how I can keep going. It's even harder still to understand how I can be considered "lucky". I know that others have it much worse. I understand that. But the thought of the RSD spreading, or getting worse is not something I'm ready to think about. Nor can I imagine what I will do to if it does get worse. It's hard enough to deal with classes when the pain is this bad. I proved last week that I can actually injure myself while biting my lip to handle the pain.

I am scared to go down the route of needing more medications. I keep imagining my stomach as full of pills and that one day I'll move and you'll hear them rattling inside me. Next to all of these frustrations, I keep having dreams that I have to stop working Julio because I can't walk. I torture myself thinking about what that would mean. And I don't know if it's fair to him to have to deal with me on these bad pain days.

I will find my equilibrium soon, but I felt like I had to tell someone, and if I cry while I'm writing, I'll cry while I'm talking. I can't deal with crying in front of someone right now, especially since most of my close friends are in class, at work or in bed. I am sorry I wasn't able to be more positive today. I hope that getting this out and actually letting the tears fall will help me to process this and I'll be more cheerful later today.

Admitting these things does a lot of good. If I can write them down, they don't feel so big anymore.

Hugs!
Nickie

Comments

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(Anonymous)
Sep. 22nd, 2006 04:37 pm (UTC)
Coming Clean
Hi Toon,
You know that I read your journal articles and also know that I love you very much. I want you to realize that no matter what happens I will be there for you as long as I am still breathing. Even if sometimes it seems I am unreasonable about the condition. Like suggesting diet changes,calling the dr when the pain is bad etc.. Now go have a salad .
Love,
Dad
puppybraille
Sep. 22nd, 2006 04:53 pm (UTC)
Re: Coming Clean
Hi Dad,

Thank you for your comment. I didn't want you to read about this whole thing in the blog first, if I was originally not going to write about it until I could talk to you about all of this stuff. I know that you love me and definitely appreciate your support. I just needed to write it out. I'm sorry you had to read it here first.

I miss you, and I'm looking forward to when you get back so I can give you gray hair from a closer distance (smile). No, I won't have a salad, but if I have help, I'll have stir fry.

Love back,

Toon

PS: JMan wants to know what you think of his new tricks.

PPS: I keep messing up your email address, so I hoope you see this. You could get an LJ just to comment on my posts.
rainykelly
Sep. 22nd, 2006 04:52 pm (UTC)
Remember to brethe
I know it hurts, and I know it's scarry, but you will get through this. I am always praying for you. It's okay to cry, and those of us who love you will gladly always listen. Don't forget to brethe in and out, and you will get through this. Love ya lots kiddo!
puppybraille
Sep. 22nd, 2006 04:55 pm (UTC)
Re: Remember to brethe
I know you're here. And I'll probablly skype you later today after I get done with all of the junk I need to get done. I'll keep breathing, I promise!
3kitties
Sep. 22nd, 2006 11:24 pm (UTC)
Re: Remember to brethe
Hey. I agree with Jen. I'm praying for you, and if you need to talk about any of this I'm glad to listen and hash it out with you. It's very familiar stuff to me. This is very hard stuff to cope with, and it does change your life. [hugs]
puppybraille
Sep. 23rd, 2006 03:12 am (UTC)
Re: Remember to brethe
Thank you for praying. I have learned a lot from you, and I will probably chat with you about it at some point, when I'm a bit more awake and thinking straighter.
(Anonymous)
Sep. 22nd, 2006 06:01 pm (UTC)
I'm praying for you. Chronic pain sucks, no two ways about it. I think this is where that "one day at a time" thing comes in, although it's far easier said than done.

A cousin of mine who had excrutiating chronic back pain for a while said that meditation really helped him manage it. If you haven't tried that, it might be an idea (although I seem to remember that you said you'd been doing relaxation exercises).

And I find music helpful when I hurt. Pain seems to stop time, and music is audible time, so it helps me feel less "stuck."

Good luck! And let Julio give you lots of cuddles: critter therapy is excellent medicine!

-- Susan
puppybraille
Sep. 22nd, 2006 08:40 pm (UTC)
Yeah, Julio has been amazing through all of this. He's adjusted so well to what I need each day.

I've found that some imagery helps, as does breathing and telling myself reassuring things. I don't know that it's considered meditation, but it helps me try to get out of the fight or flight mode that comes with this condition.

You're right about music. There are some studies that actually show that music helps with pain.

Thank you for your comment. It means a lot.
tokahfang
Sep. 22nd, 2006 06:19 pm (UTC)
"Without the hope of things getting better, I'm not sure what to hope or pray for."

You should know, that's a perfectly reasonable response. I had a very similar one 12 years ago, when I found out I was facing a life of chronic/crippling pain.

The good news is, things can get better without the pain going away. So don't stop praying for a better situation. Pray for strength, joy, and direction.

Beyond that simple truth though, you might consider that this is God answering some of your previous prayers. I know as a youngster I often prayed for my life to be a testimony, to be able to touch other people's hearts, make a difference in the lives of others, etc.

God indeed answered my prayers. I have been able to touch the hearts of many people with my story. God has strongly used me within the often somnolent church community. And my life is a testimony. But I can tell you, when I was asking for those things, this wasn't what I had in mind!

I wanted to be a doctor, to have my intellectual prowess admired and use it to help people. I wanted to be able to live by myself, without other people having to be around. That didn't turn out to be His plan, though. His plan wasn't for the things I wanted, but for what I needed and others needed.

What you're going through now is very scary, but never give up hope. There are plenty of things to hope for.on the people areound you. You can overcome, and live a life you can be content with. Chronic pain can be crippling at times, but in the end you'll find out its no more a death sentence to hope than being blind is. Life isn't gone, its just different.

Although I've never met you, you are in my prayers.
puppybraille
Sep. 22nd, 2006 08:48 pm (UTC)
Thank you for sharing with me. It's helpful to know that I'm not alone and hear a hopeful story when it comes to pain. It's not how I would necessarily preferred God answer my prayers, but if it is God's will for me to live with RSD, I pray He will give me the peace I need to get through the tough days.
hurricaneamy
Sep. 22nd, 2006 06:57 pm (UTC)
Gentle hugs. I hear your pain, and I know it's scary. Wnated you to know I am here, and I'm praying for whatever God sees fit to do here. I know you are not alone, and He has certainly not abandoned you. I'm proud of you for letting the pain out, letting the tears flow. Sometimes tears are the most healing thing we can allow in the moment.
It's okay to grieve, cry, be scared. I'm here, and if you need to talk, I'm online. Take gentle care of yourself today, and thanks for sharing how you are feeling.
puppybraille
Sep. 22nd, 2006 08:59 pm (UTC)
Thank you for praying. Your reminder to take gentle care of myself is very good. It's times like this when that can go out the window if I'm not careful.
(Deleted comment)
puppybraille
Sep. 23rd, 2006 03:00 am (UTC)
I agree hugely with you on the chocolate. Thank you for your prayers and the hugs!
kl1964
Sep. 23rd, 2006 02:52 am (UTC)
I wish I had something inspirational or whatever to say, but all I can offer you is hugs and prayers. the one piece of advice I'd give you is to give yourself permission to be pissed off if you feel that way. Above all, don't bury it if the feelings are there. Kick, scream, I'd even allow you an F bomb or two, although I have a hard time picturing you doing that. *G* Hang in there, above all else.
puppybraille
Sep. 23rd, 2006 03:07 am (UTC)
I can't say I have what we'd call perfect language, but I do try to avoid the f bomb.

Thanks for the reminder to let myself feel what I need to feel. I often forget it, but at one time, I had my youth pastor tell me "you don't think God was pissed when he flooded the earth?" This was after I tried to tell him that I shouldn't allow myself to be angry because God might not like it. It's a bad habit of mine to not allow anger, so I'm glad I have friends like you around to remind me. Your hugs and prayers are definitely appreciated!
(Anonymous)
Sep. 24th, 2006 10:27 pm (UTC)
"you don't think God was pissed when he flooded the earth?"
Go Craig....
puppybraille
Sep. 24th, 2006 11:35 pm (UTC)
Re: "you don't think God was pissed when he flooded the earth?"
That's rather criptic. Who posted that?
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