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Bed rest or Bed Arrest?

Aug 03, 2014 - 12 comments

Agh,  MH.  I've been in bed since.....Thursday.  I went to the doctor on Thursday and devised a better pain management plan that adjusted my dosing so that it covers 24 hours in hopes to avoid the waking up screaming pain that leads me to puking and crying and shaking on the bathroom floor.  It's not really working and I'm not sure why.  I haven't increased my dose by much, just making it more frequent because I've been keeping a pain journal and have found that it takes at least 60-75 minutes for my meds to kick in, so I am dosing 3 times a day with long acting and every 3 hours with short acting.  IDK.  I'm still in agony.  I am finding myself this glorious Sunday afternoon in a fairly deep funk of depression.  I truly thought my pain was so bad simply because I was doing too much.  So I have completely slowed down and have not been doing anything physical for over a week now.  I've been more aggressive with my pain management and am doing things like meditation and deep breathing exercises and using ice and heat to treat the EXTREME inflammation.  It's not working.  The butcher knives are doing their twisty turny thing and I am having some upper gastric pain that is conducive with the onset of a Crohn's flare....Which i really, REALLY don't need right now.  My man has been working 16-20 hour days so I've seen him for about half an hour a day these past 4 days.  It's super lonely.  I can't go on FB because I can't bear to look at my friends photos of their summer time fun.
I'm doing that thing that is so dangerous which is comparing myself to others.  I'm also thinking about this summer as compared to last summer.
Last summer at this time I was working with a fantastic bunch of kids on an original musical that I wrote with my man.  It was how we fell in love.  We wrote a love story together that became our love story.  In addition to working 10-12 hours a day, I was also swimming in the gorgeous river and enjoying many backyard bbq's and social events.  It was the happiest summer of my life.  My pain and illness was nothing but a distant memory.
So it's hard for me right now.  Really hard.  
I know this is temporary.  Every year I look forward to summer more than anything else.  I'm like a hot house flower- I flourish in the heat.  In a perfect world I would live 6 months in Mexico and 6 months here.  I did that for awhile before I got sick.
I've made my California King sized bed into a sanctuary filled with clean linens and 14 pillows all propping me up so that I am completely supported.  I have two fans trained on my body as it's 92 degrees here and there is no such thing as air conditioning in Canada except in retail stores.
I can see the ocean from my window and it is just filling me with sadness....
I gotta get out of this funk.  It's dangerous.  I know I'm in a dangerous place.
My problem is I don't know how to MOVE through things without actually MOVING.  All my life the way I've dealt with depression, stress, anger, and sadness has been through activity.  Hiking, running, swimming, yoga, dancing.  These are my tools for dealing with my feelings.
I don't know how to deal when I can't move.
I need some therapy BADLY right now.  But my free counselling finished in April and as I have no income right now (well it's limited) I can't really afford a hundred bucks a week to see my therapist.
I really need a support system.  But right now this computer is all I got.
I don't know what to do.  I feel so lost.  Lost.
Please God grant me the serenity to accept the things I cannot change, the courage to change the things that i can, and the wisdom to know the difference.
xo
Lu

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1742220 tn?1331356727
by meegWpaw, Aug 03, 2014
so ... the aggressive part of the pain management is re:  drugs, right Lu?  taking the meds when you should right?  not the time to be a hero sugar

um.  I know how hard it is for you to be still.  and to be home.   I am so sorry Lu but yes it IS temporary and you need to hold tight lil mama

I will write more later.  I think I need to journal right now.

I am thinking of you

wish you could come here becuz there is cheap therapy everywhere!  mine is 20 bux!  I know, hellay, but it has some good things too

watch a good movie honey

I love you lots

Meegs

1742220 tn?1331356727
by meegWpaw, Aug 03, 2014
that musical sounds great Lu, btw ...

<3  <3   <3

{{{{{{{{{{[Lu}}}}}}}}}}}}}}

6990909 tn?1435275816
by jugglin, Aug 03, 2014
Hi Dear Lu -
I'm so sorry this has you on bed arrest.  How awful.  Summer is also my favorite time of the year.  I am not on bed rest but am sad I am not enjoying this season as I wish I could.  I pray for you, that in the scheme of your life, this is the only summer that you miss out on. You will have your surgery and be on your way to recovery so that you are a force to be reckoned with next summer.  You will be 100% and enjoying all of the things that you are missing right now. Waiting $ucks. Pain $ucks. Your illness $ucks.  You are already a strong woman and can't imagine how much stronger you will be when this is behind you.  
You are in my thoughts!
Sending you prayers and extremely gentle hugs!
J

1926359 tn?1331588139
by lulu747, Aug 03, 2014
Thanks so much ladies.  I do keep reminding myself that this is temporary and yes next summer will be awesome.  Although I may be pregnant and God knows how I'll be when I'm PG!!
I'm just watching netflix and trying not to feel guilty for being inside.
Although there isn't any point in being outside in this heat unless you're in the water and goodness knows I cannot swim right now.
I'm eating canteloupe with lemon juice on it.  Super delish!  Try it (:
Jugglin-
I am sorry about your boy.  It's so common for kids to injure themselves in summer.  I have at least 3 students who've broken bones in the past few weeks.  Poor kids.  Hope he heals up great and you get to enjoy some summer time.
xooxox
Lu

Avatar universal
by vicki595, Aug 03, 2014
Hey lulu-  This all makes me so sad for you...

So, what are the pain meds you're taking now? Is it still Hydrocodone? I have some thoughts...of course!  lol

1926359 tn?1331588139
by lulu747, Aug 03, 2014
It's hydromorphone.  I avoid anything with oxy in it as it triggers my addict brain.  The specialist at the hospital does not think it's the best med for this kind of pain.  He wanted me on oxycodone or methadone or Fentanyl.  I said NO WAY!  I've tried both oxy and fentanyl.  The side effects of the fentanyl are not worth the pain relief and it was HELL coming off it.  Methadone I would never, ever put in my body EVER, and like I said- oxy was my DOC so it scares the hell out of me.
The dilaudid has always been pretty effective for me with pain relief, and causes the least side effects.  I have to take Gravol with it because it makes me nauseous but that's about it.
So I am of course all ears Vicki!!
xo
Lu

Avatar universal
by MyMelBgirl, Aug 03, 2014
Hey Lu
I will write you in a bit. I've come home to a really grouchy baby and am trying to settle her down. Praying for you!


1235186 tn?1549257619
by atthebeach, Aug 03, 2014
Hi Lu praying for you huni. Do I remember that you had also spoken about her changing your hormones?
Was that also adjusted? Was there a possible change in the surgery date?
Sending love, hope, healing and comfort,


Avatar universal
by vicki595, Aug 03, 2014
Well...I think you should take the oxycodone. I KNOW it's your DOC. BUT!  It works for you. I think your addict brain is already triggered honey...so it makes sense (to me) to go with what works.  I know you'll argue this and that's fine. It's your deal but I think the benefit will far outweigh the disadvantage at this point.

Please give it some thought without being stubborn, okay? You have so little comfort right now and I think a break from the extreme pain would be good for you.  Pain is a huge stressor, as you know.  And it could be that Oxy won't affect you in the way you think it will. I would give it a try, if it were me. Seriously, I would. And I don't take any of this pain med lightly but there comes a time when one needs to re evaluate.

Okay. I've said my piece. Now I'm going to relax and watch Forensic Files...haha.  I hope you're resting comfortably...

1742220 tn?1331356727
by meegWpaw, Aug 03, 2014
YES what Vicki said

I second that suggestion lu ... im not really in any position to offer that kind of advice but I am saying it anyway becuz I so want you to be treating that pain honey

aggressive

I love you

Meegs

1926359 tn?1331588139
by lulu747, Aug 03, 2014
Thanks Gals-

Yes Debbie (so glad we're friends now I can't believe it took so long (:)  I see my surgeon on Friday so we're going to talk about switching up the hormone as she did say it could be contributing to some of my symptoms.  AND I'm hoping once she sees me in person...And my mother....And my boyfriend...That she will reconsider moving up my surgery date if it is at ALL possible.
And for you Vicki- Miss.Vicki- I will consider it.  BUT- I've been switched to oxycodone two times in my journey and both times it made me feel HIGH and jittery and just...Not myself.  I hated it and went cold turkey within a month BOTH TIMES.  I hear what you're saying, I do, I do- but I have to consider ALL aspects of this for me.  Personality changes can be just as scary and dangerous to me as extreme pain.  So far, I haven't felt triggered at all by taking pills.  I only feel slightly sick and tired of it all....The pain...the drugs...The lying in bed.  Maybe my addict brain won't be triggered at all this time as I have no emotional trauma to numb...Only the trauma being caused by the pain.  The only time I ever abused my meds was when I was being abused by my husband....Without this pain I would be the happiest gal in the world.  I just don't want to be happy and HIGH....ya know?
But I'll think about it and discuss it with my surgeon on Friday.  Pinky swear promise.
I am being AGGRESSIVE Meegs-
I went for dinner at the folks to get out of the house and even the act of getting in and out of a car and then my puppy insisting on sitting in my lap put me in EXTREME pain distress.  I took a double dose of short acting so hopefully it evens out cuz I am currently sitting here whimpering like a puppy.
Ugh.  I hate this.

I've got my ice pack and my two litre jug of water and I'm settling in to watch the rest of this gruesome yet fascinating series The Killing.  A director that I worked with last year (he directed me in a play) is guest starring with Joan Allen.  So it should be compelling to say the least...
xoxoxox
Lu


1742220 tn?1331356727
by meegWpaw, Aug 04, 2014
ah knows ya are baby--

meegs

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