High Hopes - I Don't Want to Crash and Burn

I have been fighting my hopes that the newest changes my doc has made are going to help tremendously. My wife said it best when she told the doc the last time I ended up in the ER, "He is always very excited and optimistic that every new thing will help."

I was thinking about this comment and you could make it mean several things if you wanted to. It could mean that I have a positive attitude about treatments of any kind. It could mean that I am willing to try just about anything to get some kind of relief. Or it could mean that I get my hopes up too much and set myself up for a fall if something turns out to not be helpful or (and this has happened a few times), God forbid, the treatment actually hurts me instead of helping. The last one that hurt me, messed me up so bad that I was sent into a dark place for quite a while.

I am only now starting to dig out of this rut I have been stuck in. The latest changes in my care have seemed to help quite a bit. I am trying to keep my hopes in check because I have found the medications I am on can work for a while and then not be as helpful or even harmful. I have posted before that the medication I am on had a vicious cycle of helping and then hurting. I just do not want to feel good and hope that this is working only to have it fail and make me crash and burn emotionally and physically.

So, I am doing better as of now and I am trying to wait it out and make sure I will stay doing better. If I do, it would be absolutely wonderful! If I don't, maybe I can keep my hopes low enough to think it was too good to be true after all. Does anyone else run into these types of problems? I can't be the only one that hopes and depends on SOMETHING to finally help. I know there are a lot of people on here in more pain than I am but I do not know how many more times I can deal with hoping and then crashing...


P.S. - I have been doing better the last few days so I am happy that I have been able to feel almost human again! I wanted to make sure I got that point across, I am not just trying to be gloomy here. I am just very scared that this will not last. I am not free of pain in any regard but I am down to a 3/3.5 and anything under a 4 is as close to pain free as I can expect to get!!!


Skrape

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Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours

Post Edited (skrape) : 3/16/2009 8:24:43 AM (GMT-6)

I had my hopes high when Celebrex and Lyrica came out, they kept saying on commercials how
good these helped with pain, but then I tried them and got very very sick, on celebrex I threw up
every hour on the hour for over 12 hours almost ended up in the ER.
So my doctor stopped playing medicine merry go round with me after that....
So I don't get really excited about new medicine anymore....
I'm glad that you can obtain a 3/3.5, my pain levels in the morning are a 6 and by dinner time 8 to 10 and then
I take my pain meds and get down to a 6, and sometimes sleep is over rated.......
I hope you can get your pain to eaz up....
{{{{{{{{{{{{{{{{{{{{{{{HUGZ}}}}}}}}}}}}}}}}}}}}}}}}}

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* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

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Thank you so much. Until Thursday of last week, my pain was at a steady 8 for most of the day. It would start getting worse towards evening/night time. I have not had my pain level this low in a long time. That is why I am starting to get kind of geeked about this. I just don't want to get to the third day of this patch and crash like I did on the generic brand (I had intense pain and WD symptoms during the last 24 hours I had it on). I am hoping that this brand has a better delivery system (doc says it does) than the generic and that it is not just that I have super-absorbent, freaky skin or something!


Skrape

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Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours

Keep the faith Skrape! I'm so glad you are feeling better! Try not to get negative about the crash thats happened before, no self fullfilling profficies!. Enjoy being Human again! I know exactly what you mean as my pain has gone down since I started wearing this neck contraption. I was constantly above a #7 spiking #10's for almost 2 months now so I'm really enjoying being under a #4 for a change!! I tried F. patches a couple years ago but had big problems w/ them w/ my sweating. I couldn't keep them on even w/ waterproof plastic bandage covers on them. The just were not Florida fat guy proof! Anyway, thats GREAT news about your drop in pain w/ the new med. I'll try to e-mail you later or when I get home. It's a frantic Monday at work today> sucks big time!
Your Bud,
Pete

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56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections every 2weeks . 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, one on the aircraft carrier USS John Stennis in port in Japan and the other on a Gator Freighter USS Bataan stationed in Norfolk, Va. I am one proud PaPa! 

I have had trouble with the generic ones coming off too. It usually happened while trying to take a shower. I had to resort to taking a bath and using a cup. Even this made them come like halfway off. I can see why they wouldn't work too well in Florida. The last time I was there (heat wave in the middle of August!) it was like taking a hot shower just walking out the door!

I think the name brand ones stick a little better (at least so far). I have had the corners peel up and I have three of the four corners taped down now. I do have a problem with them getting wrinkles and not sticking over the entire area of the patch due to this. I was putting them down on my stomach for a while but I think there was just too much movement there. I put them up high on my chest but I think I had my arms stretched too far back when I put it on. If I move my arms forward (like typing on the keyboard) or bend over, it wrinkles up and comes away from my skin in certain areas.

I can put my shoulders back and try to smooth it out but the wrinkles never quite stick again. I am just hoping that I have enough surface area still touching to keep it working for another 24 hours. I did have to change the generic patch for the new one a little early because it came completely off in the shower and was down in the drain for too long before I noticed. Between the shampoo and soap going down the drain, there was no gel left on the stupid thing by the time I fished it back out again. I can understand that these would be great for people who have trouble swallowing or people in a hospice situation that are not conscious enough to take medication. But for someone who isn't necessarily active but who is trying to at least live a semi-normal life when having good pain days, these things are such a pain. I am just complaining, they are working well now since changing brands and upping the dosage so I can deal. ;-)


Skrape

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Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours

Hi Scrape,

I too ALWAYS get my hopes up way too high about a new treatment, medication, or doctor. I always think that "this is going to be the one!" That this is going to be the doctor who will finally diagnose me, or that this is going to be the medication that will finally take some of my pain away. I too always fall hard. When I leave those new doctors no better than I went in (and usually more frustrated & worse off stress/emotionally wise), I usually end up breaking out in tears during the drive home, no matter how hard I try not to get upset. It's just tough, when you've been at this for years & no one can tell you exactly what is wrong, nor what to do to help you. I keep telling myself that I need to learn not to get my hopes up, but I always do. So each time something fails, my depression gets worse, and it certainly doesn't help the pain any! Already, I'm getting my hopes way up about this homeopath that I saw today. I shouldn't do that, I know I shouldn't, but I want to believe that he is going to help me, so I do believe it, I am optimistic. Hopefully this time I won't regret it. It's taken over two years & countless different failed attempts at treatments & more medications than I can list, to finally find something that helps just slightly. Actually, only in the last several weeks have I really gotten any relief! I'm now getting down from my constant normal 8, to a 6 at best with my current combo of meds. I am thrilled to have even that much relief, as it is more than I have had in the better part of two years, but I'm still not giving up hope that we will find something else that will help much more significantly. My doc & are are both happy about the slight relief that I am getting, but not satisfied, so the search continues. Unfortunately, I'm sure that I will continue to anticipate & get my hopes up, and subsequently will continue to be shot down, no matter how hard I try. I just want relief so desperately...

Skeye

Skrape & others,
I think it's such a delicate balance. Of course we want to have hope that the next thing we try - or the next medication, treatment, etc. developed - will do the trick for us. That's normal and. I think, mostly healthly. But the reality is also there that we ultimately have to learn to adjust to "what is'. For many of us, the likelihood is we'll have some level of pain, and will have to manage that (why they call it pain management, not pain cure).

Everytime I've tried something I've thought THAT would be the medication, the treatment, the procedure, etc., and if all else failed, I'c finally try surgery. I don't think I seriously thought about surgery not working. All my other surgeries in my life have helped me (but none of them have been this major). I just assumed that I'd have to go through the recuperation, etc, but that it would be worth it. I still think I'm healing from that experience - the experience of surgery, what I saw as the "last step" - failing, and even making some things worse. Being laid off via phone call while I was out on medical leave was like a double punch to the gut.

There is no answer that applies to everybody. But ultimately we either deal with what we have the best we can, or we live in even more bitterness. I'm not sayiing this is easy, by any means; it's what I'm struggling with right now.

Don't know if this helps any, but I do understand.

PaLady

Post Edited (PAlady) : 3/16/2009 8:54:43 PM (GMT-6)

Right on PAlady, that's what I kinda was thinking except it's hard for me to says..
Great advise PAlady, sure wish pain had a cure

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**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

********>^..^<********>^..^<********>^..^<********