Thoughts Please

I've been up all night,just sitting here in the dark while the house and those I cherish most in life sleep. Thinking about that week I spent off the methadone and the years now 13, I've been on it.

I was really sick and had tons of pain on top but I remember my 15 yr older then her yrs living all the life she remembers with a CP Mom sitting with me at night that week listening to videos on U tube each with a piece of the headphones. We laughed, talked and did our horrible sing a longs. She like me shares a great love of music of 70s,80,90,.Soft rock,country, easy listening, the music I grew up with.

She did what's she's spent her life doing, bringing me comfort. Here's my need for your thoughts. I feel sometimes the long haul with methadone has robbed both of us. We haven't done that in years. I don't do anything anymore that I use to love and enjoy. I literally have felt lately that I've traded my pain away for my life.

I sit in this recliner and do hardly anything, if I go out its to the store next door. My son goes anywhere I need something done. I didn't notice just how little my life entails until the week of the methadone and everyone says even though I was sicker then a dog and hurting I talked more,did more and just was different.

I know that Barbara and only a few others take it and maybe its me or the amount of time I've been on it. Maybe other meds have made others feel the same way.

What's the answer? Is there one? Is the rest of my life reduced to this? Its not pain as I've been stable with no b/t meds for years. My pain may occasionally reach a 5 but not very often. Mainly why I've stuck with what works.

Thanks for reading and in advance for your thoughts.

RM thank you. I think I have known for awhile that change has to come.

There's much more than my 1st post some isn't as important but some is my life. I divorced at 41 when my 15 yr old was 1. I had a sort of a friend actually a bf from my high school days and we we're doing good. 7 months off hydro and on the methadone it wasn't good anymore. In 13 yrs beginning when I was barely 42 there's been many opportunities to date or have friends and absolutely no desire. Too much effort from me. I've just gave those years to my youngest daughter. She's going into high school and won't need me so much anymore. I see lonely days ahead but really don't see changes with things as they stand. I've raised kids 30 of my 55 years.

Im lucky than many here as I don't have hardly any physical disabilities and as long as I'm careful in what I do not really many limitations. I've no drive desire or want of anything more than sitting here.

I just don't know why.

Lesley I really appreciate that and yes I always had that famous get up and go as well and somewhere along the years it got up and left me.

Here's the thing. I have a Drs appointment tomorrow and my teens flying to Texas in the morning for 2 weeks and if im going to try to switch meds this is it. I absolutely hate her having to see any bad reaction from the switch or w/d. Methadone is a rough one and the ratio is some nut amount like 10 mgs of morphine to 1 mg of methadone and that my friend at 40:400 would be lethal. It hits solely on a different receptor then most narcotics.

I also may as well say I switched to a Medicare advantage plan in January and I didn't like the primary assigned and didn't bother to go back or find another. Im currently off all meds but methadone and lyrica those my Neuro writes. Not even b/p meds this month. I just don't want to look for another. Part of this foggy slump too.

I've tried fentenyl years ago and didn't like. Was on morphine for awhile and slept all the time but my pain wasn't stable and it was prior to 3 knee surgeries.

Vickie,

Your opening post this morning really touched me. I certainly respect what you have been through, what you are currently doing, and your situation in general. So few outside our CP world would ever be able to understand or comprehend your feelings.

I have long pain filled days, often lasting 20 hours being awake, sometimes less, so way too much time to think about and contemplate my "new life" having both CP and an advancing cancer with no hope of a cure. The darkest hours for me are like from Midnight to 4-5 AM, until I finally fall asleep. Sometimes I like the silence and solace, and at other times, it kind of scares me, I feel so alone, even knowing my wife is fast asleep a few rooms away.

It's hard for any of us to keep up a good face, to show courage, to keep struggling - I speak from first hand experience saying this. But what is the alternative?

People don't understand QOL issues, unless they have had theirs taken away from them.

With me, I still can't come to terms, with the fact that I have no been unable to work for 5 years this month. I was a work-machine previously, and was at the top of my game when it all came out from under me. Makes me feel I have no worth anymore, no longer relevant to the business world I worked so hard in for decades. When I am walking downtown, I see all these business people racing back and forth, and there I am, limping along with a cane. My opinions and decisions use to be major and made differences, now, its like I am a ghost walking about. Oh, look at that stupid old man, what's he doing here?

I hope you find and keep the strength to keep on going on in your CP world, and with your family and in your life. You have lots of life too, and I still think its worth the struggles and troubles to keep on keeping on.

How does the Methadone work with severe, long term pain? What were you on prior to your years of Methadone? I read a chart recently, that showed the equivalent doses between morphine and methadone and believe you have the correct ratio.

Also, what didn't you like about Fentanyl? How long were you on it, and at what max. dose? So for so many questions, just trying to better understand your background and current situation.

You do a great job here, many depend on you at HW CP, and I am one of them.

David

Hi Vickie,

I can only share my thoughts, which obviously are seen through my experiences and so forth.

On my own journey, I went through about an 18 month period where I had a very similar experience. Just had no energy/desire to do anything. I had to have constant help in my house, as I had a house full of little ones (this was years ago). I thought it had to do w/ my health issues.... but, years later and seeing it for what it truly was.... I was on the wrong meds, TOO much of the wrong meds - I was over medicated and didn't even realize it.

I was on a variety of meds during that time... but I was on methadone for about 5 or 6 months during all of that... at very high doses (plus was on a BT med). Not saying methadone was the cause for me - but it was one of the meds that did contribute to sucking my life away for almost 2 years.

I'd NEVER go back to that. I have numerous health issues and several pain issues -- but, at this point of my life, I have a decent QOL. I get out when I can and enjoy life.... if I can't get out - I'm at least functional in my home. Yes, I go through flares (just finished one up, in fact) where I can be pretty sick or even hospitalized. But those come/go.... I'm not constantly in bed/on the couch - and basically - not functional, like I was all those years ago.

To me, there's no medication (be pain medication or any other med) that is worth that. Life is short enough, hard enough - w/out having a med that sucks everything out of life. Again, just my opinion.... but coming from having walked that journey.... even for just a couple of years.

The other things that "jump" out from your post.... is that your pain is only down to a 6 or a 5 - at the very best. This was my same experience - that despite massive amounts of meds - it didn't even make my pain better! So - really - what is the point?

At the end of the day.... you obviously need to search deep and make the right decision for you. But the very fact that you are able to see these issues.... and are questioning it..... that would be answer enough for me.

I have a couple more thoughts but going to post this - as the girls are all over me and I'm afraid I'm going to lose it, lol.

--Tina

You guys are some of the greatest, wisest people I've ever known. You all have touched my heart this day. Thank you.

Im going to talk to my Dr today and see if we can figure this out.

Also reaching back in my memory thru the fog when they started the cymbalta a few years back they stopped my Celexa and then I didn't do well and changed to lyrica and know one said anything about putting me back on an añtidepressant. If I'm not mistaken cymbalta covers that but lyrica doesn't carry the same effects.

I like pretty much all CPers have been on one for years. Im thinking this may account for some of this.

I feel like some days I'm like the cartoon lady on I believe its the Abilify commercial, always outside looking in at my life like its someone else's.

Im a little more than worried about my baby getting on that plane this morning and the sheer fact she's never been away from me more then 2 nights in her 15 yrs. I believe I'm feeling a little seperation anxiety as I've never been away from her.

30 years of having kids in my house and life and my last is getting her wings under her and I'm feeling it, empty nest.

I will figure this out and with the Drs I trust get back on track and force myself to really talk to them.

Tina I've learned to accept those numbers over the years since when I got to that point I was coming from daily 9/10sand those 5s were like a Godsend. I stopped reaching for lower and better thus giving up my rescue meds and learning to just live with it.

This is a time in my life when my job of "mothering "is almost done. A place when you have 2 in diapers, 2 your running to this sport and that place and the house hasn't seen clean for a long time that you dream of and realize one day you will have all the time in the world to clean and the wheels of "moms taxi " are still that all the years have fallen away and you wouldn't have missed it for the world.

If your not familiar with country music you wont get this for those that are Gary Allen sung a song titled "life ain't always beautiful but its a beautiful ride" little more then title but certainly a song that sums up my life. Actually many of us.

To my awesome friends and family at HW I thank you for being you.

Vickie,it sounds like you've got some great kids that love you a lot.I know I've spent the last 10 years hoping to be prescribed a magic pill that would give me back the quality of life that I used to enjoy.I too spend countless hours in a recliner watching people do things on TV that I used to do.I've come to the realization that I'm always going to have pain.

I'm taking Nucynta ER 150 now.It actually works pretty well for me as far as pain-relief goes.It doesn't cloud my head as much as Roxycodone did.But if I ever relax I fall asleep.I used to have a big problem getting enough sleep.With this medicine I'm afraid I'll sleep my life away.

I'm rambling now.I wish that all of us could find a medication that gives us pain relief as well as improving the quality of our lives.

I wish you a pain-free day,
Rick

Vickie

Thank you for being so very honest.

I could have written what you wrote & have also started wondering..
For me I am wondering why I am here.. seems to be for others - for family & my few friends. I feel that I have no use for existing.

I rarely DO anything.. anything..

But I do vividly remember - several years ago - asking my PM dr to try a different pain med as I could no longer force myself to smile; I no longer could feel happiness.. all I could feel is pain & misery. That me.. Fentanyl patch improved my QOL.. I can function again.. I choose to function

I prefer to do nothing -now- as opposed to being miserable. Life goes on & much passes me by.

Re: missing your daughter..
Long before I had chronic pain & fibro
my first dose of empty nest was when my children went to a 'gifted' course for 2 full weeks when they were about 12 yr old:
I spent about 10 days of that in bed either sleeping or crying.. just a little depressed - ya think ?

(Also was very tired as I had just worked a lot of hours - for many months).

then, after those 10 days, I got up, cleaned house, went grocery shopping, etc & life picked up whee it had been before...
I have done that a few times & realized that I was exhausted, physically & emotionally. Takes a lot to be caregivers.

May I suggest you plan something fun while daughter is gone.. for me that might be Chinese food delivery or a special movie or my friend coming to my home for lunch... a phone call to someone I have not spoken to for years..

Thank you for all you do for your family - at home & on HW

You are all some awesome people and together heal as well as any medicine could. Each of you said some little thing that reached me and I needed to hear. Some brought tears others smiles and I sure needed both.

As I stood at the gate to watch my child board that plane all I could think was just get her back and go home!! I was absolutely in a tizzy, shaking and scared to death I was seeing her for the last time. My son says to me Mom its OK, this isn't like Bree. See Markala is the only child I have that was born after Bree died and she was born Preemie. All of you that have ever buried your child know that fear. The one that literally stops your heart when you think of losing another.

She will be fine he says, she deserves this trip Mom for as much of your life that you've given her she's gave you everyday of hers. She's been here with you when other kids her age actually hate their parents. I was amazed he was so wise for 23 and ashamed that he was right. She did deserve this trip and much more. I told my older daughter not to lose her and she laughed and said """ how do you lose someone 6 ft tall? She's not she's only
5'6 but since my older daughters only 5 ft at 26 and she's not seen her in 2 years. I've talked to her three times and she's fine so maybe tomorrow I will only call twice. Lol

Dr appt. He put me on lexapro for now and he's checking into a couple of meds that help with the "methadone blahs " as he called them. He's going to get back to me on that tomorrow. He seems to think a lot of it's plain old depression. Maybe but I still think the meds cause some of the lethargy and I hate the just no desire feeling for anything.

We will see in the meantime I will use this week to think of something I've not done that I enjoy and just do it.

I think a switch in pain meds might be a really good thing for you. Pain meds are meant to dull pain, but I think they can dull everything else too...especially when you're on the same ones for a long time.

It won't be easy, but I think you'll find yourself *waking up* as you start to taper off the methadone and switch to something else. At the very least you get a break from the methadone, and if you have to start it again it will be like a kick-start and be more effective.

It might be depression...but if it is...the meds are definitely playing a factor too. I got that way on the Fentanyl and have been much better since I switched to Oxycontin.

Good luck!

Vickie,

I hope the Lexapro works - keep us posted.... I think, too, that you definitely have many symptoms of depression..... as Susie mentioned, if this one doesn't work - there's a ton more to try, lol. I'm on Effexor and it works really well for me (was on Zoloft for many years, prior).

That being said, I also think reducing the methadone might be worth a try to see if you can lose the fog. As LexiRae said - I think as you taper, you might see yourself "waking up".... and, as she said, it might give your body to reset things.... and you can figure out how to proceed from there. It's really hard to make the right decision when you are in the fog.....

RE: things w/ your daughter - congrats, mama, on giving her wings to fly... and allowing her some independence. The good thing is that she's traveling w/ your other daughter! I know it's hard not to worry and to loosen the apron strings, especially with our babies.... and especially when we've had other tragedies.
I really do understand. But I think it's also really exciting to see them branching out on their own and experiencing life on their own.

Hope this new med helps.... and I would definitely consider adjusting your methadone and just see how it goes. You could always go back up.... but you may just feel substantially better - with much more clarity....

--Tina

Well I took my first anti-depressant and am sure hoping it works and realize this might take some time.

I've also decided when the Dr calls tomorrow I'm going to tell him I would very much like to try dropping at least 10 mgs of methadone a day and how best to accomplish this so it's got the best chance at success. I do know its always a slow take down with this Med but time I have plenty of!

I did do some search on meds used for opiate lethargy and every thing I found was about using stimulants and generally ritalin and viverex were the most prescribed. Im not exactly keen on using any amphetamine type meds to counteract a CNS depressant. Like robbing Peter to pay Paul isn't it? Also don't think I want to add another class of meds that carries dependance issues either. Am I looking at this all wrong?

I feel like I let myself fall into this rut and at some point it was just easier to not do anything then use the energy to get up and go.

It's gotten worse since my son moved down here in March and lives with us. He took a lot of everyday stuff over since he hadn't been here in 2 years that I was use to doing. Taking out trash, errands and groceries, even gets the mail from out at the road. Those don't seem like much but they've been little bits of exercise I was getting daily. I think I've grown lazy some! Lol. I know he does it all outta love and wanting to help but taking those small amounts of walking outside a few times daily has made me a recluse.

He even gets take out and the twice a month eating out splurges my teen and I've done for years stopped. I didn't want him to think I didn't appreciate it as he's really proud that he's helping make Mom's life easier? What do I do with that? I can't hurt his feelings.

Im certainly going to have to handle this with finesse and I have to just get back into the act of "living " and find a happy median between the meds and sacrifices of how much pain I'm willing to accept versus this non-feeling state.

My daughters having a great time and she was exhausted tonight. All I know is she's a great kid. She's grew up a single, disabled, CPers child. She's made sacrifices in her life at the same time she's never complained when there wasn't money for $100 shoes or movies with friends. She's missed party's or school things from time to time staying with me post-op or whatever, not once did she whine or rebel.

We've spent countless hours studying and reading, things such as those, just her and I. She's gotten accepted in a advanced academic performing arts program this year,and she graduated middle School with a little under a 4.0 GPA and one of the top 10 fcat scores in her district and added 7 new certificates of awards to my already full wall.

I've laid the ground work that she can absolutely succeed academically at whatever career she chooses but I've sheltered her from the real world and if I want to fulfill the rest of what I started for her my older kids say I've got to let her take all the things I've instilled in her and experience life and learn a common side to it. In other words, she is exceptionally intelligent but she's sadly got very little good old common sense that comes from life's lessons. Those are just as important.

I've actually felt better today just having a plan. A goal to work on. I've truly got some of the greatest friends anyone could ask for and count my blessings every night for each of you. In my panic of sending my daughter to Texas and thinking who could I send to her if something should happen until I could get there. The 1st thought was its okay,so and so lives in Texas she or he would help me. My very first answer was HW not anyone else I may have in Texas!

Forever grateful to all.

RM thank you and as always you've all proved your the best.

My daughters fine and enjoying the zoo today and shopping for school tomorrow. She did say the plane landing scared her to death and others weren't helping saying they were too low and coming in too fast.

I told my older daughter "she might not get back on it to come home" she said she would walk before she'll stay away from me that long.
Lol they give her a hard time about being a Mommas baby.

The Dr called and he wanted to add a stimulant which is an amphetamine to help counteract the methadone. I choose not to do that yet. Im going down .5mgs every month until the pain forces me to stop and at that point see where I stand, switch meds or did coming down some help with the lethargy and can I live with the level of pain there. Also will give the lexapro time to work.

All in all I'm happy with the choices.

You all will be the 1st to know how its working out I'm sure.