Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-15-2013, 07:02 PM #1
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Angry I’m getting too old for this...

Thank you in advance for bearing with me as I vent about my own stupidity! When will I learn that I just can’t or shouldn’t do some of the things I did prior to this monster!?! I think the following proves I am still not completely accepting what is happening to me and am still living in some state of denial.


A couple of months ago my son had me listen to some new music he had found. My kids know how passionate I am about music. I liked the album so much I shared it with everyone. However, after a few weeks I was starting to grow tired of the album and wasn’t as fond of it as I initially was.


About five weeks ago my cousin told me that her boyfriend had bought tickets for all of us (six people total) to go to a small concert of the artist my son told me about weeks earlier. Being that the cost of this had been absorb by someone I didn’t even know all that well, I felt obligated to say that I would go. The tickets had already been bought… what else could I say (is how I felt)?


As some of you know, It’s been nonstop rain, flooding, etc. here in Colorado. I have been struggling for weeks with the ability to use my legs much. The concert was last night. My husband and I did venture out yesterday to pick up meds and we even drove by the venue just to see what we’d be in for in terms of road closures, conditions, etc.; would it even be possible to get there? Sure enough, with a little negotiation around closures, it was all good.


We came home after surveying the metro area and hemmed and hawed about whether to go to this concert. My husband works full time, has nearly a full time load of college courses this semester, I’m struggling in every way to keep up with kids, home, our business, and my pain levels, not to mention we’re not getting any younger and we’re just plain tired.


Again, we did not pay for this show, and on many levels felt a bit obligated. So we went. It’s crowded, and we know this before we ever stepped into the joint because parking was insane! It was going to be several (minimum) blocks of walking to get inside. I say to my husband, there’s no way I can walk this! He knows this is true. The venue doesn’t have parking. You had to street park. I did not know that before we went. When we had driven by earlier in the day, I was more focused on, could we even safely get there? Not one handicapped spot anywhere! Then I suddenly spot an open spot in a parking lot of a few businesses that were closed for the day. It’s THE ONLY spot left in that lot, and just a short walk to the venue entrance. I/we are old enough to know better, but the damn lot was FULL except for this one spot and I just knew I couldn’t walk the distance otherwise.


We park and get inside. It’s HOT and HUMID (it’s almost never humid here) and crowded! My cousin had snagged and saved us one of the few seats in the place. Otherwise it would have been standing room only. So I was thankful for that. I said to my cousin, it’s been a LONG time since I’ve been to a hot, sweaty concert. The show was okay… nothing to write home about.


The show ends and my cousin wants us to go with them to eat. I bow out gracefully and we start to make our way back to our car to get home and to bed. To my horror we approach an empty spot. The same empty spot I had found to park my car in!! Yep, my car was towed. I am looking at others on their cell phones calling the same tow company my husband is now calling to retrieve their cars. Man am I mad! Mad that this happened. Mad that I have this damn disease and can’t walk much anymore!! Mad that there wasn’t a consideration for people who are handicapped attending events at this venue. Mad at what this was sure to cost. Mad as hell! I hadn’t even really wanted to go out at all last night! Grrr!


We called my daughter to come get us and take us even further away from home to bail our car out. It was 1:30 a.m. before we got home. The grand total of this wonderful evening was over $350 bucks! The lesson I learned about when to say NO … Priceless! (I guess).


Now, with this said, all I have to do is turn on the news and watch how 700 people are missing, the 4 or 5 people who have died, the thousands evacuated, thousands more to evacuate today, over 17 thousand folks with property loss or damage, all the compromised drinking water and mandatory boiling of water in some areas, wildlife (including bears) coming down out of the mountains (they’re displaced too), all while it continues to rain and rain and rain. I know what happened to me is minor in the grand scheme of things.


I had planned to go out for some grownup time with my best friend next weekend for a really nice dinner and to hear some live blues. I promptly cancelled that this morning.
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Old 09-16-2013, 12:04 AM #2
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Sometimes it's so hard to do what we know we should I've only been out 4 times this year because I absolutle yhad to. It 's my grandaughters 16th birthday party on 4th Oct I was the first person to hold her when she was born, I've told her I can't go, she nderstands the risks but I still intend to get a taxi after everyones gone so I can surprise her but I'll be paying for it for days after and any bumpmight make this spread..
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Old 09-16-2013, 03:02 AM #3
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I'm so sorry you had such a dreadful experience, but I think you should be pretty proud of yourself.

You cannot say no to everything new - if you do, you'll be so afraid of venturing out that you'll end up virtually housebound and your ability to deal with potential situations will decrease as well. You'd never have any fun . I know you have to temper that desire to still enjoy life with realistic thinking for each event about the potential risks for you, but don't let this put you off. I think the timing was maybe wrong, and as you say, the parking thing was a big issue that you hadn't realised - but those are mistakes anyone could (and would!) make, so don't beat yourself about it too much

I hope you'll be well enough (and your town will be a safer place) for you to reconsider your blues evening with your friends. Sounds like that might be just the thing to make you feel good about yourself again after this - after all, all the parts of that plan are known to you, and you will be with people who know you and what you are dealing with. I hope you can go

I think you were really brave to try this concert given all the circumstances, and I understand your feeling of social obligation. Ok it wasn't worth the effort in the end, cost you a fortune and stressed you out....but it just might have been great. At least you gave it a go girl - well done!

Take care of yourself for a few days and hopefully you will not be worse off for the experience.

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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Old 09-16-2013, 04:01 PM #4
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Yes, what Bram said...Please don't beat yourself up over this! Hind sight is always perfect. No way you could have known this would happen. It doesn't make it feel better but to put the money part into perspective, how many people in your surrounding areas would be thrilled to trade places.
It's important to learn when to say "no" and set boundries, but I don't want to see this MONSTER keep you isolated from everything.
I think you were very brave to go, and I think your husband should appreciate your willingness to make the effort.
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Old 09-16-2013, 04:36 PM #5
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I also agree with Bram. You don't want to give up everything and later have regrets. I hope you really consider the blues evening, check out the venue and parking, etc.

A country artist that I know pretty well (grew up with him/his family) was going be in my town and as soon as I heard, I ordered tickets. Then anxiety set in...what if I am having a bad day, etc. My husband told me not to worry about it, if I wasn't up for it we wouldn't go. If we could find someone to use the tickets, then great! I ended up having a really bad week leading up to it so I asked my sister-in-law if she wanted to go, she went with my husband (her brother). They had a blast!! The tickets were second row in the balcony and they ended up closing the balcony and moving all to the floor. They sat second row from the stage. My sister-in-law is now a fan! My husband told me that I would've had a hard time with the seats, they were metal folding chairs...ouch! I really wish I could've gone, but was relieved that things worked out. I have to be more conscious of my condition and abilities...as we all do. But I don't want to rule everything out.

I am sorry your car got towed, that really stinks! But good for you for venturing out like that, you should be proud no matter how it turned out.

I hope you are doing ok today.
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Old 09-16-2013, 10:09 PM #6
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Smile You're hired!

Okay Bram darling... I think you've just been voted in to be on payroll ..lol. You're hired! They can't all be wrong.

Thanks to you all. I appreciate all of your comments and stories. It is wonderful to be able to talk with those who completely understand. Thank you for that!! I was really aggravated, frustrated when I wrote this. Thanks for letting me vent.

My husband was wonderful. I said "park right there" and so he did. I said "@^%$! this is all my fault. He refused to allow me to take blame (he blamed himself), and I refused that. At the end of the day we chalk it up and go on. <sigh> It is what it is.

I wasn't really afraid to go for some reason (tired, didn't really want to go tho), but became very worried about my legs after the car was gone and the walking began. My legs were going numb! It was really tough and recently I've been concerned about falling from time to time. No falls yet thank God. Negotiating around the venue was really hard. Black floors, little walking runner lights, dimly lit. I need to get more disciplined about using/carrying my cane (I did have one IN MY CAR! lol). But what was required after the car was missing, was to sit down.

The upswing: The sun shined ALL day today (over my house anyway). A few clouds around us, but my body could feel the pressure lift a bit. That was awesomeness! Night-time is never very good, so here's hoping to a cloudless day again tomorrow! For me and everyone else in the area.
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Old 09-17-2013, 03:14 AM #7
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Lmao.... Vrae babe, I hope the employment deal is impressive!!

I'm so glad you are feeling a little better and the pressure is lifting. Some of the pics and video from your area have been so dreadful, I'm glad it looks like the weather is going to finally lift I don't envy anyone the clean-up operation though - it took weeks in our area after the waters went down, and the smell was horrible (mind you, that was because as soon as the rain stopped, the hot summer sun came out!).

Have a good day and a better tomorrow

Bram.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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