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A goal-check-in of sorts

I bet most of you have forgotten about these
goals and guidelines for 2008
As I've been working through my own personal hell of this flare which won't go away, I've strayed from blogging far too long. Depression and anxiety have helped me to create a world in which I see the world so darkly that it isn't worth trying to write. There are several lies this flare has gotten me to believe which have prevented me from blogging. But I'm back now, and I want to continue the healing, even as I still struggle with health issues and the fall-out they have caused. Please be gentle with me, I'm taking a tentative step out into the world, allowing others to read my thoughts and seeking the support my cognative thoughts tell me I don't deserve.

This flare has lasted longer, been more painful and taken away more of my joy in life than any other flare I've ever experienced in my five years of living with this disease. Every gain I made was a gain I could not easily keep. We fought to find the right combination of medications that would allow me to sleep at night, be moving around in the day, manage my pain effectively enough that I could function in therapy and not cause unbearable side effects. We've also started looking at new therapies to try which will hopefully give me more skills to take care of myself and, as a consequence, help to keep me more comfortable. Now that I'm starting to feel like writing again, I want to return to those goals and see which ones I can make progress on.


Drink more water, juice and healthy stuff: Okay, I admit to slipping up on this one. I still am trying to drink water and juice, but I admit that sodas and coffee still have a big hold on my drink quantity. I've started to try to encorporate water into my days when it makes sense. I'm currently experimenting with trying to drink a glass of water every time I get up to go use the rest room.

Increasing consumption of healthy snacks: I've been eating more granola bars than chips, but I still enjoy my chocolate and candy. I've also tried to branch out and eat things I didn't eat before. Fore example, when I go to a restauarant for breakkfast, I get a bowl of oatmeal and some fruit. Many people think that's weird, but I do notice that I have a lot less nausea than I would if I ordered a big breakfast.

Start an exercise plan or work with a physical therapist: I've started doing physical therapy in a special pool which has water that's about 92 degrees. It's absolutely wonderful! I think this is going to be a key point in recovery, especially in the areas of weight-bearing and sensitivity to touch. I've only had one session so far, but I already know that I love it!

Find new therapies which will decrease my pain: Without wanting to outline a lot of what I've been doing, I will tell you that I've gotten my medications adjusted, tried some more nerve blocks (with sedation this time), and added some other therapies I'll write about in other portions of this update. For the first time in a very long time, I can say that my pain is finally down in the 6-7 range of the pain scale for most of the day, and that my breakthrough pain is finally able to be managed. I don't know how permanent this will be, but I'm enjoying it while I've got it.


Blogging about my emotional responses: I've been very bad about following up with this. I'm trying to start doing this more, though a lot of this is being done privately. I'm slowly starting to see my blog as a safe place to share again.

Seriously consider counseling: One thing I regret about this summer is that I don't have access to the counselor I worked with during the school year and I never made the effort to look for someone who I could work with on a temporary basis. I think that, in hindsight, that would've been very helpful.

Learn one new mindbody skill: I'm working with a wonderful biofeedback therapist right now, and I'd like to write more about this in a separate entry. It's a wonderful tool to use, and I'm really glad I'm able to do it.

Do at least 20 minutes of relaxation skills a day: This one is a bit challenging, but since I'm doing the biofeedback right now, I'm actually pretty good about racticing my various skills and improving my ability to use them.


Praying more: I'm starting to get better about prayer, and I've also been able to reconnect with the group I prayed with every Monday night during high school. They call me every Monday night and we pray. I'm glad to have the comfort of prayer back in my life again and the ability to talk to God is wonderful.

Read the Bible: I need to confess that I'm not as good about this as I'd like to be. I'm getting better, but haven't made it a daily commitment, which is where I'd like to be.

Start a grattitude journal: Well, I started it, but I've been horrible about trying to continue it. I think the key here will be to reward myself for any writing I do for this, and not try to scold myself for not doing it well enough. I've set myself up for failure by scolding myself for not writing enough, and now it's hard to want to do it at all. I think the key with this is that I need to want to do it, or at least feel like I can do it, not that I have to do it.

Read a spiritual book: I'm slowly making the move toward more spiritual literature again. I recently downloaded the first book in the Left Behind series, and read it. That's a slow step toward improvement in this area.


Need I say more? I'm sorry!


I haven't done much in this area either. I'd like to do better, since I'm within sixx books of reaching a relatively significant milestone.


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Jul. 31st, 2008 08:56 pm (UTC)
prayer time
Hey, several of us connect via msn every couple weeks or so to pray together. We do this via typinmg out our requests and prayers. Its really been a blessing and powerful time to meet together and with God. You aren't on my msn anymore but its just my email and if you want to re add me I can let you know when the next one is. I'm actually thinking tonight or Saturday. So, let me know.
Aug. 1st, 2008 03:57 am (UTC)
Re: prayer time
I'll definitely try to re-add you, I probably won't have reliable access to the internet, on a schedule, until I go back to school, but that group sounds like a good one.
Jul. 31st, 2008 11:22 pm (UTC)
It is wonderful to see you back on LJ again. While I have been praying for you quite a bit, I have to confess that while I could and should reach out to you more, I realize that it might be too much for you and I don't want to apply pressure or make you feel in any way like you have to rspond, since trying to do that when you feel so terrible cannot be easy or something you'd want to do. . So just know that you are being prayed for and that I always hope for and wish the very best for you. I pray that these new therapies and the various medications can help. God knows you deserve a respite from this. It's hard to express how I'm feeling, or to try to find words that might comfort you, so please know that you are always in my heart and prayers.
Aug. 1st, 2008 04:00 am (UTC)
Thank you for praying, I really apreciate your kindness toward me. I would love to talk with you more, so please don't feel that you can't or shouldn't try to email me or chat online. If I really can't deal with having a conversation, I'll tell you, or I sometimes just don't answer . I know you care, so you would not be putting pressure on me.

Thank you again for all of your prayers, I am convinced that they helped!
Aug. 1st, 2008 04:37 am (UTC)
Wow. I remember going through that. I'm so sorry! I never would wish nerve pain on anyone, it's so awful. Pool therapy helped me SO MUCH. We actually bought a hot tub and claimed it on our taxes. The only place I felt no pain was in the hot tub. It just broke a few months ago, and is too expensive to fix. Fortunately, we found the right meds awhile back. My point is, if you're in a position to, you can get a hot tub and claim it as a medical expense.
You had nerve blocks withOUT sedation? I had 2 with, and 1 without, and I will never again have another one. That last one was one of the worst experiences of my life.
I always hated it when people told me what drugs to take, but you might want to look into Xyrem. It's being used in Europe for nerve pain, but here it's just for narcolepsy. Very few side effects, except that you sleep like the dead at night. Still, it really was the deciding factor in my pain going away. Also, hypnosis was awesome.
RSD does, indeed, suck.
Aug. 2nd, 2008 11:16 pm (UTC)
Thanks, I'm really happy that you've found something that works! That is a huge reason for celebration. I've never heard of this drug, but I may bring it up with my RSD doctor, he usually is very up-to-date with the studies, and communicates with pain medicine colleagues in Europe and such. It might be worth a try.

Also, that's really cool that you were able to get the hot tub as a medical expense, I don't know that I could do it, since right now I use a medical patch which would release a large amount of heavy pain med into my system if I get too warm. At least, that's what they claim. I've not experienced that so far.

I'd be very interested to hear more about your experiences with using hypnosis for RSD, I tried it, but haven't had much success, but I wonder if I'm just not using an effective method.

Thanks for commenting and sharing your experiences. It's good to see someone who's actually found relief!
Aug. 3rd, 2008 06:14 am (UTC)
I know - I never thought I would feel good again. I'm still not 100%, and I'm tired ALL THE TIME. But I'll take tired over in constant pain.
For hypnosis, I actually went to a trained hypno-therapist. She said I was really easy to hypnotize, actually. Anyway, we worked on scenarios, and we came up with this one where I was walking down stairs to a beach, and then relaxed, and then I was in a room with the pain. I visualized it, and I wadded it up into a ball (of fired) and banished it somewhere. It really did work, though not for long periods of time. Enough to get me through a meeting or a show - I did theatre once upon a time, and I was in the last show... well, that's another story. Anyway, it was also great to get to sleep with, because I could relax and somehow the sheets wouldn't feel as abrasive.
You can get relief - it's just HARD. And the stigma that surrounds pain drugs doesn't help. Oh, have you found the American Pain Foundation? I love their info.
BTW: Your dog is gorgeous!
Aug. 1st, 2008 10:05 am (UTC)
Wow nickie! Sounds like you've got lots of goals there. I'm coming to see in my own life that it's better to focus on one or two goals at a time though. It's good to see you writing again. Your LJ is one of my favorite journals to read.
Aug. 2nd, 2008 11:19 pm (UTC)
Awww, thank you! It's good to see you're still out here, I hadn't seen you post in a while, and was wondering where you were. I'm glad to know that you're okay!
Aug. 1st, 2008 09:50 pm (UTC)
good to hear your voice again
I was actually just about to email you to see how you were doing. I'm sorry it's a rough uphill climb.

Aug. 2nd, 2008 11:22 pm (UTC)
Re: good to hear your voice again
Thanks! Yeah, it has really been rough, but hopefully these improvements will be enough to get me back on the correct path. I definitely appreciate your concern.

It's actually probably good that you didn't email me. With my interesting email skills, or lack there of, I would've made a great example for your etiquette post (that was very nicely written by the way).
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