Comments for Mel's Real Life Drama http://melsreallifedrama.wordpress.com Living with Complex Regional Pain Syndrome - Welcome to my World........ Fri, 16 Oct 2009 08:47:34 +0000 http://wordpress.com/ hourly 1 Comment on Paula Abdul’s Battle with RSD/CRPS. by Tyffanie http://melsreallifedrama.wordpress.com/2008/09/27/paula-abduls-battle-with-rsdcrps/#comment-244 Tyffanie Fri, 16 Oct 2009 08:47:34 +0000 http://melsreallifedrama.wordpress.com/?p=291#comment-244 Wow, its so nice to know that I am not drowning alone. Somedays I fight myself, my family, my sanity. I never knew how much it could hurt until I found CRPS. It hurts, I don't sleep well, and lately the pain has been in full flare up. Now I am finding it hard to walk on one side, but its all in my mind right. Winter is coming and I can't leave my house due to the pain. Medication brings it to a lower level, but then someone touches me, or bumps me and the roller coaster is racing again. My doctor wants to do a SCS, but I don't know what questions to ask. I have had st.g. nerve blocks, and they lasted the whole of 20-26 hours, but it was a piece of heaven. I keep asking them to chop off the hurting parts, but then I wake up and know I can do this for today. Thanks for not leaving me out here alone and convinced I had lost my mind. Wow, its so nice to know that I am not drowning alone. Somedays I fight myself, my family, my sanity. I never knew how much it could hurt until I found CRPS.
It hurts, I don’t sleep well, and lately the pain has been in full flare up. Now I am finding it hard to walk on one side, but its all in my mind right. Winter is coming and I can’t leave my house due to the pain.
Medication brings it to a lower level, but then someone touches me, or bumps me and the roller coaster is racing again.
My doctor wants to do a SCS, but I don’t know what questions to ask. I have had st.g. nerve blocks, and they lasted the whole of 20-26 hours, but it was a piece of heaven.
I keep asking them to chop off the hurting parts, but then I wake up and know I can do this for today.
Thanks for not leaving me out here alone and convinced I had lost my mind.

]]> Comment on My Profile by melsreallifedrama http://melsreallifedrama.wordpress.com/my-expanded-profile/#comment-239 melsreallifedrama Mon, 07 Sep 2009 02:11:06 +0000 http://melsreallifedrama.wordpress.com/?page_id=151#comment-239 Hi Thanks, I am going okay for someone with CRPS!! Battling on! No I haven't had the Ketamine Coma. I have only had the awake low dose version, here in Australia. Wish your friend all the best! Mel x Hi Thanks,
I am going okay for someone with CRPS!! Battling on! No I haven’t had the Ketamine Coma. I have only had the awake low dose version, here in Australia. Wish your friend all the best!
Mel x

]]> Comment on My Profile by Jan http://melsreallifedrama.wordpress.com/my-expanded-profile/#comment-238 Jan Sun, 06 Sep 2009 12:13:35 +0000 http://melsreallifedrama.wordpress.com/?page_id=151#comment-238 Dear Mel! just stumbled over your block today while searching on that 5 day coma therapy...hope you´re doing better by now but are not sure ´cause you did not reply on Marie´s question above. Actually I have the same question, have you undergone the ketamine coma therapy and did it bring any improvement? See, luckilly I am not affected by CRPS but my girlfriend is suffering since one year after smashing three fingers in the left hand. She tried already the stelatum blockade with no improvements, traumal and amytriptilin at different dosage, but as you know for sure that is altering your personallity, changing your mentallity and is not giving any cure. Hence now she is thinking of the ketamine coma treatment. We are based in Germany, so even going to Tübingen (reffering to the article in your blog!) is possible...so if you couls share some of your experiences, it would be very helpfull. All the best to you and never give up hope! Yours, Jan Dear Mel!

just stumbled over your block today while searching on that 5 day coma therapy…hope you´re doing better by now but are not sure ´cause you did not reply on Marie´s question above. Actually I have the same question, have you undergone the ketamine coma therapy and did it bring any improvement?
See, luckilly I am not affected by CRPS but my girlfriend is suffering since one year after smashing three fingers in the left hand. She tried already the stelatum blockade with no improvements, traumal and amytriptilin at different dosage, but as you know for sure that is altering your personallity, changing your mentallity and is not giving any cure. Hence now she is thinking of the ketamine coma treatment. We are based in Germany, so even going to Tübingen (reffering to the article in your blog!) is possible…so if you couls share some of your experiences, it would be very helpfull. All the best to you and never give up hope!

Yours, Jan

]]> Comment on Everybody Raise Your Hand if U Agree……… by PonoKai http://melsreallifedrama.wordpress.com/2008/11/23/everybody-raise-your-hand-if-u-agree/#comment-237 PonoKai Thu, 03 Sep 2009 20:15:11 +0000 http://melsreallifedrama.wordpress.com/?p=314#comment-237 Absolutely agree with you 1000%. Absolutely agree with you 1000%.

]]> Comment on Ignorant People………Why do they Still Exist? by Charlene http://melsreallifedrama.wordpress.com/2008/08/26/ignorant-peoplewhy-do-they-still-exist/#comment-227 Charlene Sun, 03 May 2009 21:30:46 +0000 http://melsreallifedrama.wordpress.com/?p=272#comment-227 I can empathize with you all .When it come's to helping other's I agree with the above post just give a short answer as to why you can't help them but yes if walking does not bother your pain then definatly offer to find someone. I can empathize with you all .When it come’s to helping other’s I agree with the above post just give a short answer as to why you can’t help them but yes if walking does not bother your pain then definatly offer to find someone.

]]> Comment on Physician with CRPS/RSD Fights for the Right to get around on a Segway by Caf http://melsreallifedrama.wordpress.com/2009/03/31/physician-with-crpsrsd-fights-for-the-right-to-get-around-on-a-segway/#comment-225 Caf Sat, 11 Apr 2009 07:30:51 +0000 http://melsreallifedrama.wordpress.com/?p=348#comment-225 thanks for sharing this! A segway wasn't something I'd ever considered by my goodness it WOULD make my life easier!! thanks for sharing this! A segway wasn’t something I’d ever considered by my goodness it WOULD make my life easier!!

]]> Comment on Ignorant People………Why do they Still Exist? by melsreallifedrama http://melsreallifedrama.wordpress.com/2008/08/26/ignorant-peoplewhy-do-they-still-exist/#comment-222 melsreallifedrama Tue, 31 Mar 2009 13:40:57 +0000 http://melsreallifedrama.wordpress.com/?p=272#comment-222 Hi Joni, First off u need to accept the way things are, then you have to become experienced in those situations. I find it much more easier to go for an easier very simplified answer because no one wants to hear the long drawn out version. I simply say I am sorry I can't grab it for you, I have problems with my hand (s) but I can see if I can find someone for you................ I had to get used to this fast because I was working in a hardware & timber store where big men expect u to be very fit and able! Hence was....lol pushing myself made me worse. Good luck with it. Melanie Hi Joni,

First off u need to accept the way things are, then you have to become experienced in those situations. I find it much more easier to go for an easier very simplified answer because no one wants to hear the long drawn out version. I simply say I am sorry I can’t grab it for you, I have problems with my hand (s) but I can see if I can find someone for you……………. I had to get used to this fast because I was working in a hardware & timber store where big men expect u to be very fit and able! Hence was….lol pushing myself made me worse.

Good luck with it.
Melanie

]]> Comment on Ignorant People………Why do they Still Exist? by joni http://melsreallifedrama.wordpress.com/2008/08/26/ignorant-peoplewhy-do-they-still-exist/#comment-221 joni Tue, 31 Mar 2009 13:27:58 +0000 http://melsreallifedrama.wordpress.com/?p=272#comment-221 wow! after reading your post, i feel so much better. i feel so not alone. i have just recently been diagnosed with crps and getting people to understand is difficult to say the least. it only been three months but things have been moving pretty quickly. winter is now turning to spring, thankfully. i just found out that the cold weather is one of the contributing factors of my pain, so ive been wearing gloves along with my brace and splint. but how do you explain to people. example, just yesterday i went to the supermarket with my older daughter, i was wearing my winter coat and gloves so one really could not see on the outside that there was anything wrong with me.while there i had an elderly woman ask me to help her get something from a shelf. normally i would jump at the chance to help someone in need, but this was a gallon size jug of juice on a higher shelf. i reached for it as i didnt know what else to do, but my daughter came and said "mom you know you cannot hold that", i might have dropped it on myself or God forbid the woman. what do you do in that situation? Do i have to go around explain my condition constantly? wow! after reading your post, i feel so much better. i feel so not alone. i have just recently been diagnosed with crps and getting people to understand is difficult to say the least. it only been three months but things have been moving pretty quickly. winter is now turning to spring, thankfully. i just found out that the cold weather is one of the contributing factors of my pain, so ive been wearing gloves along with my brace and splint. but how do you explain to people. example, just yesterday i went to the supermarket with my older daughter, i was wearing my winter coat and gloves so one really could not see on the outside that there was anything wrong with me.while there i had an elderly woman ask me to help her get something from a shelf. normally i would jump at the chance to help someone in need, but this was a gallon size jug of juice on a higher shelf. i reached for it as i didnt know what else to do, but my daughter came and said “mom you know you cannot hold that”, i might have dropped it on myself or God forbid the woman. what do you do in that situation? Do i have to go around explain my condition constantly?

]]> Comment on My Profile by Marie http://melsreallifedrama.wordpress.com/my-expanded-profile/#comment-214 Marie Wed, 18 Mar 2009 20:59:40 +0000 http://melsreallifedrama.wordpress.com/?page_id=151#comment-214 Hi, Mel! Wow, finding your website today has been a much needed lift lady!.....I so appreciate, respect and admire your direct honesty and insight. I have CRPS Type II (injured in summer of 2003), had back surgery on herniated disc L 4/5, only to wake up far worse off. Have done 3 steroid shots, 3 nerve blocks, 7 MRI's, extensive p.t., etc., had the spinal stimulator implant (made it worse too) and had it removed 4 months ago. I would literally chew off my entire leg if it would help! This is such a cruddy way to live. I don't have insurance (was 11 days shy of gettting it at work when injured and laid off), so getting help has been even more trying. Had zero debt when I got injured and now the amounts owed are so enormous that it is downright overwhelming. I'm exhausted! Here in Florida, at least, many of the drs. seem oblivious - I've even been told by one that I don't pray hard enough and that I must have bad kharma! Don't know what God this Dr. believes in, but clearly not the loving, non-judgemental God that I believe in. Unfortunately, even in the medical field, I have come across so many that are clueless, uniformed, feel this need or desire to put me in a box, particularly since I have found very few meds that help even slightly, which makes it even more trying. Right now I'm looking into the ketamine coma or infusions. Was reading in your 2007 blog, but wasn't clear if you did indeed try the ketamine?? I'm not superwoman, but I'm still a feisty Southern broad with a passionate soul & spirit and my heart goes out to anyone who lives in horrible chronic pain....and I totally agree with you that pain is NOT a competition....losing ones quality of life feels the same for everyone, I believe. It can be very isolating - I'm an empty nester and seldom am up for getting together socially with the few friends I still have here or even my own family (my spirit wants to, but most times my body says hell no!). While I know there are real empathic people out in the world, there are still enough others that are down right cruel and/or ignorant. Get real folks! Harsh? Perhaps, but it is my truth after almost 6 years of this....and so, I am ever so thankful to finally have a used computer in my home again (donated recently) to open my horizons much further, to hear others needing to vent, to receive encouragement and if possible, to pass on encouragement as well. Here's one of my favorite quotes "Never look down on anybody unless you're helping him up" by Jesse Jackson. A highlight today....the wisteria is blooming in my backyard and smells heavenly! Take care, Marie Hi, Mel! Wow, finding your website today has been a much needed lift lady!…..I so appreciate, respect and admire your direct honesty and insight. I have CRPS Type II (injured in summer of 2003), had back surgery on herniated disc L 4/5, only to wake up far worse off. Have done 3 steroid shots, 3 nerve blocks, 7 MRI’s, extensive p.t., etc., had the spinal stimulator implant (made it worse too) and had it removed 4 months ago. I would literally chew off my entire leg if it would help! This is such a cruddy way to live. I don’t have insurance (was 11 days shy of gettting it at work when injured and laid off), so getting help has been even more trying. Had zero debt when I got injured and now the amounts owed are so enormous that it is downright overwhelming. I’m exhausted! Here in Florida, at least, many of the drs. seem oblivious – I’ve even been told by one that I don’t pray hard enough and that I must have bad kharma! Don’t know what God this Dr. believes in, but clearly not the loving, non-judgemental God that I believe in. Unfortunately, even in the medical field, I have come across so many that are clueless, uniformed, feel this need or desire to put me in a box, particularly since I have found very few meds that help even slightly, which makes it even more trying. Right now I’m looking into the ketamine coma or infusions. Was reading in your 2007 blog, but wasn’t clear if you did indeed try the ketamine?? I’m not superwoman, but I’m still a feisty Southern broad with a passionate soul & spirit and my heart goes out to anyone who lives in horrible chronic pain….and I totally agree with you that pain is NOT a competition….losing ones quality of life feels the same for everyone, I believe. It can be very isolating – I’m an empty nester and seldom am up for getting together socially with the few friends I still have here or even my own family (my spirit wants to, but most times my body says hell no!). While I know there are real empathic people out in the world, there are still enough others that are down right cruel and/or ignorant. Get real folks! Harsh? Perhaps, but it is my truth after almost 6 years of this….and so, I am ever so thankful to finally have a used computer in my home again (donated recently) to open my horizons much further, to hear others needing to vent, to receive encouragement and if possible, to pass on encouragement as well. Here’s one of my favorite quotes “Never look down on anybody unless you’re helping him up” by Jesse Jackson. A highlight today….the wisteria is blooming in my backyard and smells heavenly!
Take care, Marie

]]> Comment on Lent week 2 – Hope, Anger and Courage Reflections by Mark http://melsreallifedrama.wordpress.com/2009/03/06/lent-week-2-hope-anger-and-courage-reflections/#comment-211 Mark Fri, 06 Mar 2009 23:20:42 +0000 http://melsreallifedrama.wordpress.com/?p=339#comment-211 Hi thanks for a great post. I'll be back :) Hi thanks for a great post. I’ll be back :)

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