At a cross road.

[lulu747]

Hey Guys-
So this is what's happening and I'd love any and all advice.  Most of you that have been around for awhile know my history.  Diagnosed with Crohn's Disease in 2006 as well as RA- put on many drugs including opiates.  Pain terrible.  Almost died several times because of drug reactions to Remicaid and methotrexate.  Diagnosed with stage 4 endometriosis in 2008.  Underwent surgery.  Lived on massive amounts of opiates for a year before realizing I wasn't just using the meds but running out early etc.  Went cold turkey.  Was sober for a year.  Pain came back to the power of ten. Ended up on Fentanyl patches as my tolerance was so high.  Underwent second and miraculous surgery in 2010 in which my uterus was reconstructed.  Tapered off the fentanyl- switched to oxy (ugh I HATE that drug) Felt like I was going to die so tapered as long as I could and then went c/t in December of 2011.  Which is when I met all you lovely folk.  Felt great for nearly 2 years- totally clean, active, happy.  Built my own business doing what I love.  Fell inlove for real.  Six months ago I started having debilitating menstrual pain again and severe bleeding which has escalated to the point where I spend at least 4 days a month in a ball on the bathroom floor puking from the pain.  My docs/family/lover/friends all know my history.  I have taken very low doses of opiates (t3's) at night a few days a month when the pain is unbearable.  The rest of the time I take NSAIDS.  Unfortunately, these are a no no with Crohn's and now my other disease is flaring.  Cannot take them any more.  I saw my surgeon two weeks ago.  She determined through pelvic exam and internal ultrasound that my endo is indeed back.  I am scheduled for surgery in three months.  She is trying to stop my bleeding with a hormone intervention.  It's been two weeks and it is not yet working.  I have been awake for 4 days puking and in horrific pain.  I don't know what to do.  I have very few options.  I am scared if the pain does not lessen and I must take a T3 at night for 3 months that I will become addicted or at the very least dependant.  Part of me thinks there is no freaking way I would go back down that road.  I am a different person now.  I was seriously depressed, in an abusive marriage, and had no quality of life when I lived in that opiate haze.  I have too much to lose to go down that road again.  Am I being naive?  I asked for an earlier surgery date but they cannot do it as I am bleeding too heavily and it would be unsuccessful.  Thoughts?  I have gone to ER several times in the past few months and when asked which drug I want I have chosen toradol.  It was sort of effective.  Maybe I should request this instead of T3's?  I am scared of being addicted but I also cannot suffer.  WHAT DO I DO???  Also I should say I am still working a recovery program and am doing physio and pain coping seminars.  I am being proactive.  But we all know how sneaky the addiction can be.  Trying to keep it real.  ALSO- I am doing all this so I can get pregnant.  Sorry for the uber ramble but this is where I am at.  Thanks all for your continued support.  xoxox Lu

[lulu747]

Awe Teri!  So good to hear from you girl!  That ***** about the IC.  I have it too.  May I suggest to you that you try a different opiate for pain?  In my experience Oxy is the absolute worst.  It doesn't really help pain plus it seems to access my addict brain in a way that the others do not.  Both times I freaked out and went C/T was when I had been on Oxy.  It just makes you high.. It does.  There is a reason it is the most abused prescription opiate out there.  Last night was rough for me.  I had a show and was in so much pain afterwards I was awake puking until 6 am.  Finally gave in and took a pill.
Bless you girl.  I'm so happy to connect with you.
Chronic pain is the absolute worst.  You can have the best life ever and it just wears your spirit down so much.
I am having surgery in June and then as soon as I heal I am going to try to get pregnant immediately.  I really really hope it's possible as I have stage 4.  I also have an amazing surgeon so fingers crossed.
Fingers crossed.
Love to you Teri
xoxox
Lu

[Teri9498]

Hey Lu...so sorry ur in so much pain!  Ur story sounds so similar to mine!  Remember when we first came on here, u were getting off all ur meds & I was getting off methadone, well once I was off that, I started getting the most horrible, unbearable pain & just thought it was from withdrawals bc they can do some crazy stuff to r bodies, well I finally couldn't live like that anymore, so I went to the dr & after a few months of tests & surgery I was diagnosed w/IC....I was just like u & beyond scared to take anything after what I'd just been thru!  I had to finally just accept that I couldn't live my life in that kind of pain & had to take something, so I take 10mg oxy as needed, but  its getting to the point where its not helping & I'm having to take more...I feel so scared & alone, falling back into the opiate haze!  But being in that kind a pain is not an option anymore!  I wish I had a magic wand & could take away both of r pain...just know ur not alone, I know how bad this pain is!  I was also diagnosed w/endo when I was 17, had surgery where they lasered it off, then I got pregnant not long after that, they say pregnancy can make it better, which in my case it did & I never had anymore pain after that...please don't suffer, if u need something for pain, take it!  Chronic pain is so bad for ur body, spirit & soul...I'm here for u honey, if u need anything, or just want to talk , send me a PM anytime!...hope u feel better doll....sending u the biggest cyber hug ever!  ;)

[VICourageous]

Lulu..I really think you will be alright..Just remember that the part of the Brain the Mid-Brain (survival) will remember how good it felt when you abused them..Be intune with that and just take them as prescribed..Stop that Tape from playing the song just one more for this or that reason..YOU will be fine.
Good Luck on your up coming surgery..YOU do not need to be in Pain..Just be Safe!! lol
Bless

[lulu747]

Agh struggling right now.  Pain is awful.  So I have meds.  But I feel terrified every time I take one that I'm going to end up going down the dark road.  But then if I don't take one and I am awake all night suffering I can barely function and my life is so awesome right now!  I just want this to STOP.  The pain, the tape in my head.  I had the craziest week full of wonderful success with work.  I went for a massage.  I talked to my counsellor.  I am being as proactive as possible but I cannot seem to get over this fear that I am going to get messed up by these drugs again.  Surgery is two months away.  I am taking a 4 mg dialaudid about every other night when I can't stand the pain and need to sleep.  But this pain is relentless and the fear is awful.  Advice?  Please?

[lulu747]

Friends-  my pain is worsening and my spirit is feeling pretty dark right now.  I don't know what to do.  I took a half pill last night at bed time and another half in the middle of the night.  I slept zero hours.  It's Sunday so I don't know where to go for help.  Dilaudid is a strong pain killer and should help, but it is not.  I am getting really bad referred pain into my right shoulder.  I was concerned maybe I was having an ectopic pregnancy because these symptoms are congruent with that and this is a high probability in my condition.  Just did a test and it was negative.  What do I do?  Took some tylenol, laying in bed crying.  Really don't want to take the heavy stuff during the day.  I am in a bad place and could really use a pep talk.  I'm on the endo support group on this website but it's quiet over there.  I feel I get better support over here as addicts tend to be the most compassionate of people.  If anyone has experienced this disease and pain I would really love some advice.  Anything.  I need some hope.
xo
Lu

[lulu747]

Two reasons:  The T3's were not adequately treating the pain (I was still in agony) and because I refuse to take an opiate during the day and cannot take NSAIDS I have been taking extra strength tylenol every 4 hours.  The doc was concerned about the amount of acetaminophen. Plus the codeine is really constipating and causes more pain.  I guess that was three reasons (:

[clean_in_ks]

Just curious, Lu....why the jump from T3's to Dilaudid for this 3 mo period?

[lulu747]

Just thought I'd check in.  I realized I was in a bit of denial about the severity of my pain on Thursday when I was teaching.  Usually when I am working with the kids I am able to transcend the pain and I only collapse in a ball afterwards when I get home and my adrenaline is fading.  Thursday I had to sit in a chair the whole class and direct them and at the end, I actually cried from the pain.  I have never ever cried in front of these kids- I know they think I'm some kind of super hero but really, I don't want them to worry about me (they are so sensitive) I want their class to be about THEM.  They were, of course, confused and worried.  I had to explain I was having some health issues that caused some pain but I was OK.  I came home a total mess.  My love begged me to go to the ER but I waited (up all night in extreme pain) and saw my doc yesterday in the am.  We got real.  I told her about how terrified I was at the possibility of needing to take opiates for the three months leading up to this surgery.  She told me I had to have some relief.  That I was doing damage to my body and my psyche by denying myself pain relief.  We agreed on dialaudid 4 mg.  Max 2 a day.  One month supply, will check in after that and we will re-evaluate.  I pray that the pain will have subsided after 6 weeks of hormone therapy and I won't need to continue.  But if I do, then I guess I do.  
So after I left her office with instructions to take a half pill and lay down with a heating pad I did.  I had a FULL ON PANIC ATTACk as soon as I put the pill in my mouth.  I'm not sure why, I took this med last year for 3 weeks after knee surgery and was totally fine.  I have taken it for 3 or 4 days after ER visits during a particularly horrific period.  But I guess I had psyched myself up.  Luckily, I had an appointment for a reiki session afterwards.  She did some energy work on me and said to me "Why is it that you believe that you are not good enough and never will be?"  I started to bawl.  I have done SO much work on myself and thought that I had let this outdated belief go.  I guess the fear of my addiction getting the best of me again has brought these feelings up, which caused the panic.  I was able to breathe, let it go.  I felt better.  Calm, grounded, more myself.  I was able to enjoy a lovely evening with my man.  The pain got bad around bedtime as it always does after an active day.  I took a pill.  I went to bed.  I slept 9 solid hours for the first time in months.  I am so relieved.  I am going to continue to check in here and I am headed back for some EMDR therapy next week.  I just wanted to post this to remind myself and everyone else that healing is a constant journey of self exploration and we must always be aware of our negative self talk.  Working on yourself is a life long project.
Anyways, thanks for reading my rant.  Love to you all.
Lu

[lulu747]

Girl this doesn't sound the least bit corny to me.  I think you are amazing and have from the first day you posted on this forum.  Even when you were all bats&*%* crazy and running away from rehab I knew that you were going to survive this...And not just survive but thrive.  It makes my heart so happy to hear that you are doing just that.  Your family must be so happy to have you back...God YOU must be so happy to have you back.  The very heart of truth about addiction is that if you learn to love yourself unconditionally and continually act from this place- it loses it's power.  Addiction is all about fear and the best antidote, the only antidote for fear is love.  Huge hugs for you Dana.  I am beyond proud of you and very touched by your words.  I will take all this advice.  Vicki is a wise lady and I always heed her words.  And yours.
xoxox
Lu

[lulu747]

Yep.  I am seeking any and all medical help that I can at the moment.  I am blessed that I am able to be completely open with all my doctors and they are the best in the biz in these parts.  When I first got clean I emailed my specialist and went on a huge rant about how opiates were not good management for long term chronic pain.  She published it on their website and has since added the pain psychology clinics along with a physio on staff to help endo patients to manage pain after surgery WITHOUT drugs.  I will be a part of these intensive clinics post op.  I spoke with her nurse via phone today and she said that we will come up with a short and minimal med program for me until surgery.  I have really discovered it is all about the plan.  Sets you up for success and gets rid of those 'fears of the unknown'.  Bless you Sarah for all these years of support.

[Dane74]

I know this sounds so corny, but for the first freakin time i said the words "I love you" looking in the mirror to myself, i was instructed to say this for 2 years from my therapist and from all the therapists when i was in rehab, I just couldn't do it nor was i willing to try,finally 2 years, YES 2 years later, i finally did it yesterday for the first time!!!  So what i am getting at is i just love the fact that you love yourself that is so huge in recovery.....  I hate that you are in all this pain, so glad to hear you are seeing your doc, please don't be stubborn, and know that when used properly its OK to use pain meds that's what they are intended for, you are not abusing, be smart about this.  I am worried about you as this was me about a year ago and our dear friend Vicki, told me " Dana take a dam pill, not more than one before you lose it", of course i didn't listen and i screwed up, i don't want that for you.  PLEASE, get this pain managed, you have the help and support of your family, deal with one problem at a time, you got this girl, i have faith in you.....

[dominosarah]

I am relieved to know you have an appt to see your doctor.  

[lulu747]

Ok Dana you just made me cry.  I am having such a hard time with this.  I know you are right.  I do love myself now which is awesome.  I really did not until I got clean.  The pain is so nasty.  I actually just made an appointment to see my family doc and am also having a phone appointment with my specialist.  The pain is starting to mess with my head and I need to get on top of this before it gets out of control.  I feel like a bit of a basket case today.  Your words mean a lot to me.  Thank you.  Thank you.  Thank you.
Love
Lu

[Dane74]

Oh Lu, i am so sorry for all your pain:-((  Girl, on a positive note, you sound so freakin amazing, i love your attitude you sure have grown over the past 2 years and i am so happy for you.  Lu, i mean you LOVE yourself now, that is amazing, i cant begin to explain to you how proud i am of you, i know personally how hard it is to love and forgive ourselves and it takes allot of work and determination and girlfriend you did just that!!!!  Ugh, all the pain, ok here is my advice on this as i know pain all too well, have your "lover" hold your pills, and don't let the pain get so unbearable as what can happen is you can get the F' this attitude and pop too many pills, i am just saying this as this is what happened to me when i relapsed.  I was so scared to take the pills as needed NOT to abuse and my stubbornness and the pain was what made me just snap and say F' it.  So please, just be carefully with this, i feel for you i really do, nobody should have to suffer even us addicts.  

[lulu747]

Awe thanks ladies.  VI- that is totally why I am afraid of the opiates.  They led me down that he*&ish path even though I began taking them for pain.  My lover is in control of the pills.  I take one T3 at bed.  It gives me some relief.  I fear that this will not be the case in awhile as we all know about tolerance and that..But I am determined to take the minimal amount of drugs so that I can take the minimal amount post op and then be free (hopefully forever)
It's interesting to me that I can survive on one T3 for pain that is much worse than the pain I used to be on fentanyl patches for.  Aahh the slippery slope.  I am just gonna keep checking in here.  I figure the more people I am accountable to, and the more I communicate openly and honestly, the less likely I am to lie to myself.  Also, I have become aware of the dark depression that pain brings on.  It's important to deal with the pain before it becomes depression that is more likely to make me want to numb out.  A little bit of pain= healthy and lets you know you are alive and not infallible.  A lot of pain= a dark and lonely place.  Thank you all for giving me a soft and comforting place to vent my fear.
xo

[VICourageous]

Dear Girl I feel for you!! I know just what it feels like..I was so messed up with the female thing I had to finally get a complete hysterectomy, but I was in my 50s. That situation is why I got the hydo/oxys that lead up to the Methadone being prescribed. OH! I am so sorry and I can feel the pain from here.

I wish you the best and I pray you can find something for your pain!

[Sarah11212]

BIG hugs Lu :(
I think the others are right in that, with the kind of pain you are having to endure, you need to take something for it.  Give it to someone to hold and know that it is temporary and necessary.
I think sometimes the pain we allow our bodies to go through, for fear of taking something for it, is worse on the body.
I'm so sorry you are having to go through this.
I will include you in my prayers.
xoxo

[lulu747]

I am so hurting right now.  The hormone to stop bleeding is not helping.  Been awake in pain since 5 am.  I can barely walk but I made it through my ten hour teaching day just taking tylenol.  I feel so defeated by this pain.  I just keep praying and saying "this too shall pass"  BUT WHEN???  LOL.  Ugh.

[momscared79]

I to have endometriouses. Its so hard and painful, and the surgery to remove scar tissue gets harder everytime. I know that when I have a flair up, I have no choice as I am allergic to ibuprofen. I think as long as u know your limits u should be ok. Just remember how hard u have worked to get where u are at. Good luck

[dominosarah]

I feel so bad for you Lu and i know how hard you have worked your recovery.  IBK gave you really good advice about pain meds and having them doled out to you.  I really believe that if you could get something that would ease up the pain a bit you would be more comfortable both physically and mentally.  This pain wears you down and allows your brain to really start messing with you.  Yes we are addicts but right now you are having medical problems that is affecting your day to day living and that is what pain meds were made for.  This would be short term.  You are suffering way to much.  Make a plan with your doctor and hubby and get some relief.  Sending you a comforting hug my friend~

[lulu747]

Thanks for saying what you did.  I think I know these things in my head but it is always good to get affirmation.  I didn't realize Toradol was an NSAID (duh) that explains why my tummy hurt for 3 days afterwards.  I do think I've come along way in changing my addict behaviour and thinking.  I know that when I used pain meds before it was legitimate, but I also used more than I needed to and that was because I was broken hearted, beat down physically and emotionally, and married to a man who raped and abused me.  So yeah...2 years of therapy and recovery has done a lot to change my thinking but mainly it has taught me to love myself unconditionally.  To forgive myself.  To treat myself with the same compassion I used to reserve for others.  I am fortunate to have amazing family support, friends who I can tell anything to, and a man that treats me like a queen and is the bestest friend I have ever had.  
Merri123-
Yeah the nurse and doc were both shocked when I chose the Toradol.  "Sure you don't want some morphine?"  "NO! " I said.  "I've been down a long bad road with morphine."  The nurse "the toradol shot is very painful.  I've seen grown men cry from the pain of it".  Yeah well I barely flinched.
"Woah" she said. "You are in a lot of pain".  YES!!!  Gawd, after years and years in and out of ER and hospital/surgery I only go when I have no other choice.  And yes, I have a high pain tolerance.  It's something you have to develop when you are an addict (:
You ladies rock.  Thanks for the show of support.

[Merri123]

I know this is extremely painful. But the end is in the future again. My friends was so bad , she ended up getting a hysterectomy.  You know how to taper and stop. You will be fine again.

I know Toradol is one of the most powerful pain killers. And is not addicting. However everything I have ever read is it won't be prescribed at all. Too powerful. So you get your shot when you go to the ER. But by picking that they know you are not drug seeking and will take care of you good. All they hear is "Toradol doesn't work on me". No it doesn't get you high. It works just fine.

Take care of yourself. Living in pain is horrible. You can't function during those days. We're here for you.

[clean_in_ks]

Hey Lu......I don't know you and I don't think you know me either...LOL...but

from one chronic pain recovering addict to another.....

You sound very wise.....and vigilant.....and because you DO have a 2 year foundation in recovery you have that ability to be honest with yourself.  You know in these health circumstances that you find yourself in....what is "healthy" choice and what isn't, imo.

You said this above:  "I have very few options.  I am scared if the pain does not lessen and I must take a T3 at night for 3 months that I will become addicted or at the very least dependant."

Taking "a" T3 at night sounds like what a non-addict would do....huh? :)

The Toradol route doesn't sound feasible since it is an NSAID and you are already having a flare up of your Crohn's.  Plus Toradol was designed for "short term" use....like 5-7 days (not 3 months).  

If you are getting the needed relief from the T3 and only take it when absolutely necessary......you are following the protocol ANY patient would suffering the current level of pain you find yourself in.

I commend you....you should be proud of how far you have come....and I surely hope your surgery is successful and you can conceive after you get past this.  
Thank you for putting yourself "out here" for us.....a wonderful example for all of us who live with chronic pain and need affirmation.
May your blessings abound, Lu~  

[lulu747]

Thanks to you both.  IBK- you've been a total rock for me and I agree with what you say.  I know that I've done an intense amount of therapy and personal growth and know that I am no longer needing to numb emotional pain- this is purely physical.  I have also realized that severe pain can be as mind altering as substances, and just as dangerous.  So far I have managed on one T3 at bedtime.  Sometimes- like last night when I awoke screaming and puking from the pain- I took another.  I guess all I can do is stay vigilant.  Keep communicating...Keep working on healing.  Ultimately, that is what this is all about...Healing.  It's been a long road but I do have to say that despite the misery this pain causes, I am the happiest I have ever been in my life.  I am determined not to do anything to compromise this.  Thank you so much for your thoughts and your support.  In other and more promising news- I am completely off the zoplicone (sleep med) that I was on for 15 years and am successfully tapering off the benzo I've been on for 8.  I am determined to be drug free and hopefully preggers within the year.  I deserve this.  Much love xox