Okay..let me say.....
 

As we are all aware... not one treatment or medicine works the same for any of us..so who is to know what affect we'll all get..there now with that said...

We go thru the high and lows of treatment and interventions...SCS, blocks..Ketamine...on and on... I am beginning to feel a bit like the fury fella running on the wheel..anyone else???? I am starting to side with one of our friends who once said..I am done..DONE.. done..with it all..I am an RSD mess and that is the way I will live... one good thing..we won't die from it...thats what they say right???

Guess I am sounding tired..but what I really want to say is..I wish I had a magic wand..cuz if I did ..I would love to make you all here feel better and rid of your RSD....

Momf4... I am so sorry on what you should really do...as it seems we are all hitting the part in the road in which way to turn.. Our Dr.'s still go home at night ... painfree themselves..leaving us lie awake at night wondering what tomorrow has in store for us.. Please let us know how you are doing.. We are your friends....

You, and all of my friends here are in my prayers....

Kathy:grouphug::grouphug::grouphug::grouphug:

Kathy--

Don't EVER GIVE UP!! That's what WC wants me to do - that's why they have tormented me, harassed me, harassed my treating physicians and other providers...Mike's answer was AWESOME - there is an answer for us - in the long run. It just takes time, which is so darned frustrating. We wait FOREVER for phone calls, and approvals, and appts, and treatments, etc. And for me, I am not made of money, so we need the cooperation of the insurance company, which is NOT going to happen easily. EVERYTHING is a battle, nothing falls in our lap, we have to work hard for it. BUT WE CAN'T GIVE UP. If ketamine is not the answer for us, then a pain pump likely may be. We need to ensure that we always have a Plan A and a Plan B. And maybe even a Plan C. You are going to see Dr. S soon - he knows so much, and can guide you to the best of the best. You hang in there...It's almost here.

FMichael - I have said it before, you are awesome!!!... as your were composing your posting I was in the process of trying to wean down off of some of my opiods. The brain fog and depression and crying spells are creating quality of life issues, and I think cutting down on some of my meds will make me better off - your posting was so timely. I just have trouble with the head and neck pain...they tend to get worse on lower levels of meds...but I want to give it at least several days.


Love and Peace, Sandy

Hi I am also thinking of ketamine. A few thoughts I agree that it is so hard to make treatment choices. We all differ so much. I think what I like about my last pain doc out of many is that he started at the least invasive and worked up. Now i have seen a couple pain docs who feel narcotics in the long term were not for me either. Like you said because it is chronic and actually your brain begins to process pain more. Again though I don't judge anyone for being on them here if it helps them. I was also suggested a scs but after 2 procedures that were less invasive that increased my pain level this was ruled out for the time being. I am not seeing are you on any meds like neurotnin etc? Also I had been suggested anti inflammatory meds. For me in a flare up this does not cut it but for some it may. I wish I had an answer for you and unfortunatly docs do take guesses at us. For me it is weighing the pros and cons and feeling comfortable with the doc. Hang in there and hold to hope. I always say it just takes 1 doc to look out of the box to make such a difference

Sandy...

You are awesome..can you tell I go high and low with my strength and energy to fight.. RSD is not our friend..but it has met its match..I know that if I am not a candidate with dr. S... (I have cardiac problem also).. i will be okay as I knew it was not in the cards for me.. but as you say..I will move forward.. how ?? Cuz of you and my friends here..feuling my tank... I so need your support and help..ANd you always have mine... I wish I could say something to help ease you back off of your meds and help you with not crying..Please.. don't cry... you are loved..

Hugz, Kathy:grouphug:

Dear Kathy -

I keep feeling the need to try and connect with you. I guess I was again struck in your last post when you noted that "RSD is not our friend..but it has met its match.."

Please be careful. It's been my experience after living with this for nine years now that the more we struggle "against" RSD, the greater our sense is that life has become unsatisfactory. Which may be the case, seems to be especially so if we express our satisfaction relative to meeting certain pre-set goals and expectations. I know some wonderful women who have withstood the greatest possible challenges of motherhood while fully afflicted with CRPS. It's my sense they have done so by modifying in some subtle sense the definition of what it meant to be a success as a parent, while not losing touch with its essence: maintaining a compassionate relationshio with one's child, through which the child will grow and mature. (Never easy for me in the case of my youngest son, now 12, who has no memory of me being healthy and doing a lot of the expected things with him, and which will bring him to tears in a second if focussed upon.)

But the key IMHO is not to wear ourselves out swimming against the tide. You let the rip tide take you where it's going, and swim into shore where you have the chance, not necessarily where you planned.

I was reminded of this over the last week in two related contexts. Firsts I was discouraged when a doctor changed my psychiatric diagnosis to "personality change secondary to general medical condition" (DSM IV 310.10) until a very wise psychologist who's currently repeating some neuro-psych testing on me in response to increasing complaints of loss of attentional skillls - which were never good - pointed out that I wasn't being told that I had acquired a personality disorder, only that my deep patterns of dealing with the world had changed. Then, case in point, I got my revised WISC III scores back (using the older test for better comparison with old data) and while the spread between my verbal and non-verbal IQ has increased to an almost unheard of 45 points (6 points is considered by some to be probative of ADHD, and 12 points typically conclusive, but 45???)* the thing was, although my non-verbal scores had decreased - as expected - my total verbal score was the highest it had ever been, with the most substantial increase in my ability to spot abstract similarities.

The point being, if we are determined that we are going to beat this thing, then we might as well stop trying to learn anything from it. In the words of Ram Dass, we "take the curriculum."

Of course, that doesn't mean that we shouldn't take advantage of opportunities when they come along, such as the chance that we may soon bave access to potentiated analgesics, with more effectiveness in controlling pain and less opportunity for developing either tollerences or GI/respiratory side effects. Which would be - in my own book of prejudged outcomes - not a bad thing at that.

Peace.

Mike

*This, by the way, is the reason I could never be a doctor.

Thanks Mike..
 

Hello Mike...

I so appreciate your note and insights... no doubt through your 9 years in having RSD..you must have much education and become quite versed on best we need to view and approach our daily struggles with our RSD.. You are right in that it is an education that we learn over time which must couplink with the process of acceptance.. which is the very first step of this process... I probably should clearify myself when saying "RSD is not our friend and that it has met it's match".. I guess best said.. it was my way of not givng in.. and faking it out... in that it does not have total control...although I have altered and learn to live with my condition..simplified and educated my family and friends on how best to live with it and me but also..accepting it as this is me now (not going against the tide).. but also still keeping the gentler, kind, simple parts of my life matter as much as they did before.. Yes, things have changed in that physically and mentally my life is different but it has met it's match due to not surrending and now living with it.. I guess you and I are saying the same thing... except my approach is different...I insist I need to blend in the soft parts of life ... like laughs.. love..and giving out to others which over shadow my sadness and bring me warmth and pleasure to my heart..that gives me strength... that is something RSD can not get it's hands around and spoil..that is where I say... it has met it's match and it is not my friend.. but I can still enjoy my life inspite of it...again it has mets its match...as we all need to have an out which does not depend on RSD.. RSD is such a big part of us now..but we can't let it consume us... we need to draw strength from it to swim toward the tide and nicer parts of our lives.. gives us the re-newed strength.. to keep swimming... I am not able to support this with numbers or data..just talk that comes from my heart....

Painfree day, my friend...Kathy:)

Dear Kathy -

Thank you so much for that. I know all too often it doesn't sound like I'm coming from the heart, but I am in my way. I just don't do so much of the hearts and flowers sort of stuff - although I have in fact embarrassed myself in that area in one member's blog of late.

What made your response so wonderful is that it was spoken from a point of true authenticity. Which is great.

And while it may come across that way, my more technical postings, at least these days, are meant to be a genuine response to something someone has said. As a result, I'm not starting a lot of threads anymore. Whereas, years back, I started threads often, frequently on what appeared to be the latest medical advance, until it came to the point that I had to admit that every time I reread one key article I was totally revising my understanding of it, to the point that it took me weeks to figure out that the key concept that was eluding me was the same one that caused me to double-incomplete a 5-level linear algebra class in college, c. 1978. That said, one of my early "best selling" threads (maybe 2,000 hits either here or more likely on the old BT) began with a holds no barred post under "RSD and marriage." So at least lately I really try to make a point of staying with what I believe I really understand, whether in the head or the heart. But when I do, I have no hesitation in trying to drive home hard truths, even to the viscera, with the understanding that we speak from the heart only when we speak from truth, however uncomfortable that may be. But that's just my style.

It's funny, before I turned on the computer this afternoon, I had been out with one of my sons, and while I was waiting for him I was thinking of what might be your take on my note. Then it hit me. There was something else that I could have included in the post, part of an email I got the other day from my MBSR teacher, to whom I was introduced a year into this sleigh ride, in response to a recent cry out on my part. Having now read your response, it feels perfect:

It seems that we are getting to an age where people around us (including ourselves) are getting sick and some are dying. It's a tuff one. We all know it happens and get it on many levels.... but still it is a sad loss.


These things bring up lots of emotion and for most it is pretty difficult to talk about it, no less understand oneself. After reading what you wrote to me, this is what came to mind...


I think because death, sickness, our mortality is all so confusing to most (including me... who actually has some understanding.) Maybe one way to deal with this is to really pay close attention to our own reactions. Doing this by paying attention to our body sensations, thoughts and moods(emotions/feelings.) But doing this, not just in formal meditation, but more frequently during our daily living... Paying attention to our speech, (content and quality of voice) listening to our attachment to our ideas and witness how they color how we experience ourselves and others. And doing this as much as we can in the here and now. Remember to check in with the body, notice our clenching (the grasping and pushing away) Asking how are we deluding ourselves? Ultimately... Pausing and asking what is true here and doing this in a very kind way. What I mean by this is not to analyze but to just notice what is arising, no matter pleasant or unpleasant, like or dislike. Just noticing and experience, how it is in the moment, as conditions arise and pass away. This journey we are on is really simple... waking up and seeing what is true. Experiencing what it is to be human. So really experiencing life moment by moment (obviously easier said than done.) I think this is the best thing any of us can do for ourselves and for our children. This journey is an inside job. And the more we continue persevering on this path, true wisdom and compassion shows itself to ourselves and others. So, each time we open to this moment, freedom is possible. Side note... if this is too much for Sunday morning... please forgive me. (loving smile . . . .

Mike

I think..
 

that is so nicely said..and I believe..looking in at ourselves is probably the hardest thing to do..at the good and bad.. especially since we all have a less than favorable illness..an illness that will take more patience and understanding of the normal... So allow me to add...that we all have a path..a life long path to follow.. their are many bends and swift turns in our path... it's not the unstable...path that is the trouble..it is how we chose to travel the path that makes us stumble... Allowing ourselves to enjoy our life no matter what challenge lies ahead.. love our life for what we are presented as we get only one shot at this journey and no practice runs..take each minute, each day and rest assured...Even now with RSD, I would not trade one step of my path for anything... I am still the luckiest lady out there.. I am very sure of that...

Great post and thank you Mike, and others for your honesty and input!

Rest peacefully tonight my friends...

Kathy:grouphug::grouphug::grouphug: