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Feeling sad desperate and alone

Jul 30, 2014 - 21 comments

Oh fu*k.  I don't wanna whine but I am in HELL here.  I have not slept in 3 days.  THREE!  The pain and swelling is so intense I can't get it under control with the pain meds at my disposal and I don't know WHY!  I am finally taking as prescribed but I still can't get on top of it.  My lumps and bumps are growing and I can actually feel my pelvis throbbing as if it has it's own pulse.  I can't sleep at night because I have 3 butcher knives inserted in me- one in my lower spine, one in my cervix, and one up my rectum.  Sorry MH TMI but I honestly don't care any more.  Last night I did something that I'm really upset about.  After years of tapering I finally managed to come off the sleeping pills I'd been on for nearly two decades.  Well- at 6 am when sleep was a distant possibility I cracked and took half of one.  It didn't help.  In fact, I felt high- the combo of the pain meds and sleeping pill made me feel high and that made me feel so panicked it furthered sleep from my grasp.  My boyfriend found me at 7;30 this morning sitting on the kitchen floor crying.  I took about 40 mg of melatonin last night along with the tryptophan and a sleeping pill and pain meds and still NO SLEEP.  I am an emotional wreck right now anyways, three days with no sleep is pushing me over the edge.  And here I am on another gorgeous sunny day in bed with an ice pack on my abdomen and a heating pad on my back and I can barely see the screen through my tears.  I CAN NOT DO THIS ANYMORE!  How the hell am I supposed to live another 9 weeks like this???
I see my GP tomorrow....But what is she going to do?  I don't want more drugs.  I DON'T!!!
The doctor and nurses at the hospital last week told me I needed to treat my pain more aggressively and never let it get above a 5.  How do I do that when I can't get it below an 8?
I told them I was addicted to pain meds and fought so hard to get off them and they said that was the last thing I should be thinking about.  HOW CAN I NOT?  If I let my dosage go higher then it will be 7 months on this crap and you all know that that is going to be a hard taper.  I'm gonna want to do it fast too because you all know how bad I want to be pregnant asap.
I feel like I am stuck between a rock and a hard place and I have NO idea what to do.
I need to calm down.  I'm going to do a meditation now and try to get myself dressed.  I have a class to teach tonight and so I really need to get it together.  My man is gone away working for 5 days starting tomorrow and I am scared to be without him.  But I am also scared that our whole relationship is becoming about me and my illness.  I hate it.  I don't want this.
Deep breaths Lu Deep breaths.
I am praying for a miracle.  I see the surgeon next Friday.  Hopefully she can help me.  Somebody needs to help me...
Sorry sorry sorry for the complaining but I am cracking under the weight of this.  I'm scared I'm gonna break.

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5986700 tn?1380791380
by spider6, Jul 30, 2014
Oh man, you poor thing....I wish I had an answer.......medicinal cannabinoids are a deal breaker huh?  I don't know man, how the eff you people in so much pain keep typing and keep coherent.   I'm a psycho mess when I'm in pain....you are so brave and strong .....I just have no words only awe.  I will pray lulu but do you think there might be a point when you'll say okay I need narcotics cuz I'm going mad with pain?  You can't go on like this girl 9 weeks!  Geez!  Hugs hugs light and love...breathe and meditate. bless you.

4810126 tn?1503942735
by EvolverU, Jul 30, 2014
Lu,

I feel so helpless reading this but I want you to know that I did & that for what it's worth I'm witnessing you. I'm here.

This is crazy. What's going on with the surgery. What's wrong with these people? (Sorry! venting on your journal ;))

Please be careful with the Melatonin. That is a crazy high dose & they're discovering that it can affect hormonal balance. So, with the endo, I'd think you'd want to check it out. Also, the actual dose needed is supposed to be much lower than what most manufacturers are doling out. I don't think it's something to take every night.

I completely understand why you reached for that sleep med. Everyone has a breaking point & you've been so d*mn strong & continue to be. Don't, don't, DON'T beat yourself up, my friend!

I want you to know that while you're man is away [& again, I can totally relate to your feeling of foreboding about that] that I for one will be here checking on you as I'm sure others will.

I'm going to light a candle for you this evening & do a healing visualization.

Reaching through the screen to place my hand over yours & give it a gentle squeeze. You're not alone :)

1742220 tn?1331356727
by meegWpaw, Jul 30, 2014
Hey baby what up what up ...

I don't know what I can do but I would surely do anything to help you out of this pain right now Lulu.

Is there any way you could have something powerful in an injection form that your bf could give you periodically?  I hope I am allowed to say that.

Lu maybe as someone I think ms d suggested in another journal, that once they see you they will move the surgery date?  is that at all a possibility?  

Try to take one day at a time and not look at the whole 9 weeks.

I am thinking of you constantly, I am here, if you need to talk or anything else you can think of i'm here for you anytime and I love you so much.

lovelovelove

Meegy

1926359 tn?1331588139
by lulu747, Jul 30, 2014
Thanks Ladies-

Spider- my doc suggested marijuana in medicinal form and I did try it before turning to the opiates.  It doesn't really help this kind of pain and it made me paranoid and depressed.  Not to mention HIGH which since my last detox, I really hate.  It sends me into panic mode.

Annie-
I had NO idea about the melatonin.  I've been taking huge doses of it daily since I went off the sleeping pills and have tapered my benzos down to almost nothing.  That su*ks.  I thought since it was all natural I was doing the right thing.  How can this be that all my answers seem to backfire?  Thank you for being here for me.  You guys are my life line right now.  I can't seem to really connect with any other endo sisters in any way.  Maybe because we're all just suffering and barely hanging on by a thread.

Meegy-
Yes I think if Dr,Williams sees what a state I am in she may try to move my date.  At the very least she may try to come up with a better management plan.  She mentioned in our phone appointment that the high dose of progesterone that I'm taking could be contributing to some of the inflammation.  There just aren't that many alternatives.

I feel like a total disaster right now.  I have high social anxiety and the thought of trying to teach my adult acting class tonight is daunting.  It takes so much mental and emotional energy and i am tapped.

I so wish we were better off financially and could have an escape somewhere where I could lay in a hammock and read a book by the ocean.  Our anniversary is Sept 1st long weekend and we're going away to a small island retreat....That seems so far away right now.

I just can't believe I am back here, ya know?  It's funny reading all the posts about opiates numbing your emotions.  The very last thing I am right now is numb.

I am a fountain of tears.  A lake of sadness and despair.  But i cannot drown in this despair.

I am grateful for you my lovely MH friends
I am grateful I have a man that loves me to the ends of the earth and is so supportive.
I am grateful for my family that is always always there.
I am grateful for my comfy king sized bed.
I am grateful that I can still hang on to my business, and my dream
I am grateful that I can see the ocean from my bedroom window.
xoxoxo
Lu

1742220 tn?1331356727
by meegWpaw, Jul 30, 2014
gosh Lu I forgot to say that I so wish you did not have to teach tonite!!!!  it seems like the Last thing you should be doing ... wish I could jet up there and teach it im sure I wouldn't hold a candle to u but i'd do it for you.  then i'd come take care of you.

god bless you for making a grateful list!

I am grateful for you.

and I love you

Meegy

1926359 tn?1331588139
by lulu747, Jul 30, 2014
I just talked to my Mom.  She and my Dad are trying to find out if they can pay my surgeon to do the operation privately.  It would probably cost 20 grand or more but she says they will do it if it means I can get out of this place faster.
She also talked to my previous doctor (who is still her doctor and the doctor I was with when I detoxed in 2011) he said that I should be dosing on pain meds until I pass out.  He said this amount of pain is dangerous.  Honestly, I am a little shocked hearing this from him as he was so anti-opiates and one of the main reasons I went cold turkey in the first place.
I don't know if either of these are answers but at least their options.
I really don't think my surgeon is going to be able to look at me on Friday and not see that I desperately need this surgery ASAP.  Maybe she has a patient that is not as critical as me and I can switch dates...Or maybe she will do the surgery privately.
I am praying for a miracle and ask you to pray with me.

Meegs.  I am grateful for you too.
And I love you.
xoxoxo
Lu

5575813 tn?1452481085
by Hollus, Jul 30, 2014
I am at a loss for words right now and feel so sad that you are in so much pain. I am praying that it will be within your parents means to help you. It's so frustrating to have something right in your grasp but still not be able to reach it! I hope this surgery will be very successful in removing most if not all of the tissue causing the problem so that you can have relief and gain your BFP. I will also pray that in the mean time, you can get some much needed rest to help you raly and deal with this nasty endo! I am rooting for you and I'm glad to have you for a friend! Hang in there Lulu!!

Avatar universal
by MyMelBgirl, Jul 30, 2014
Hey Lu
I really really hope your doctor will move you up. If she had an elective case moved back and put you in that spot it would be the right thing for her to do IMO. I wonder why she can't call the OR and tell them she has an urgent case to add to the day.  They would probably bump a case or two and maybe need to use on call OR nurses and anesthesia but who cares. You need this done like yesterday.  Adding urgent cases to the OR schedule is something that happens on a daily basis. I wish I could help you Lu. I really do. I haven't found anything myself that helps that kind of pain except one med that is no longer available.  When pain gets this out of control it is so hard to get it back down to a manageable level. I understand why your emotional and I would be too but it can make the pain even worse.  Something has got to give here. Have you been on Lupron for this at all? Would it be something your doctor try while you wait? Some ladies have had good results with it. I have been trying to think of something to help your pain ever since I read your first journal. I know it would bite but could you possibly be admitted to the hospital for intractable pain just until it's under control and you are comfortable enough on meds to go home?  Could you be see a pain management doc? They are much more familiar with how to treat different kinds of pain. I'm sure you have probably thought of all this yourself.  It's just not right that you have to wait so long to get any relief and sleep. I'm really sorry this is happening. Lots of love hugs and prayers to you.

1742220 tn?1331356727
by meegWpaw, Jul 30, 2014
YES!!!!  Maybe one of these options will pan out honey .... I went for a walk and I'm on my phone I'll write more when I get home.  Yes ... take the p. Meds til u fall asleep ... I agree
  Love u doll

1926359 tn?1331588139
by lulu747, Jul 30, 2014
Hollus-

Thank you sweetheart- I am grateful we are friends too.

MMG-

They Gyno I saw at the hospital last week wanted me on Oxycodone as he said it is better for this kind of pain.  However, my history with opiates is that oxy really triggers me, makes me feel high, and both times I Cold turkey'd meds it was Oxy.  I've tried every med under the sun for this pain and the combo that really works is the hydro I'm already taking combined with Toradol.  I LOVE Toradol.  However, I have Crohn's- and when I first started going back to the ER for this pain in February I asked for injections of it in lieu of opiates- I started to flare within a week.  It's not worth it.  It ***** that the one drug that really helps me with one disease sabotages me with the other ):
If the pain does not settle down by tomorrow I am going to go back to the ER to at least get it under control.
My surgeon did suggest the Lupron, but I have a long history of reacting VERY badly to these kinds of meds.  I've spoken to dozens of women who've tried it and all said they would NEVER do it again.  One injection and it stays in your system for 3 months.  And if I react badly that could compound this misery I'm already in.

I see my GP tomorrow.  We'll talk about pain management and the new info I have on surgery date and my recent ER visits.

I am late for class.  I have to go.
I'll check in later
Love you all
Lu

6990909 tn?1435275816
by jugglin, Jul 30, 2014
Prayers out to you Lu. I hope your appts bring you the much needed help you need.  I pray for your miracle that they are able to move your date up which would be the right thing for them to do under the circumstances. You are a strong lady and it is your turn for a miracle!
Prayers and oh-so-gentle hugs!

1742220 tn?1331356727
by meegWpaw, Jul 31, 2014
how did class go, darlin?   how you feelin?  hope you are done by now, I have no idea about the time difference.  get some rest, hopefully sleep, take your meds!!!!  be good and try to look on the bright side of things.  options are presenting themselves.  I am thinking of you honey.  I hope you know how much you have helped me get through these past few days!  your words are tremendously powerful, kind, and loving.  I love you!   xxx  ooo   {{{{{{{lulu}}}}}}}}}   Meegy

1926359 tn?1331588139
by lulu747, Jul 31, 2014
Meegs-

We have no time difference.  It's been an emotional evening.  Andrew and I had a long talk about what is going on and I broke down and admitted there is no way I can continue on as I am.  Going back to work full time in September is impossible in my current state.  I don't know if the private surgery will work out or if I can get my surgery date moved up but it is very clear to me that I need a real break here.  I need to make healing my number one priority.
Andrew reminded me tonight that I built my very successful business out of nothing in a very short period of time.  I am not even getting joy from it now as I just suffer suffer suffer so the best (and only) thing to do is put business on the back burner and focus on doing whatever the hell I need to in order to get well.  I am a force when I am well.  I will get back on top again, but I cannot do that from where I lie right now.
Plus Connie CIK sent me an extremely profound letter that rocked me to my core and gave me some serious things to think about.
I am going to try to sleep now as it's nearly 2 am and I've been awake for 56 hours.
I love you
Lu

5986700 tn?1380791380
by spider6, Jul 31, 2014
Oh God Lu, please be able to rest.....bless

Avatar universal
by againnot, Jul 31, 2014
Lulu,
I don't know you at all, but I do know that constant intense pain like you're having can't go on.  

My daughter had lupron and it made her worse.

Myself....I had tapered down to nothing a couple months ago.  It wasn't easy.  I've relapsed.  My cancer pain got to be too much.

I think some people honestly need them.  You sound like that.  Can someone hold the pills for you?  I started that 2 months ago...gave bottle to husband .  So he gives me 3/day.  It has helped tremendously!  He doesn't understand.  He said " just don't take as many".  Yeah, right.  As long as he's agreed to hold the pills, even tho he doesn't understand addiction, it's ok.  It's solved my problem.

Did a dr help you with your wd from benzos?  Such a nasty drug.  I got off of them for a year, about 20 years ago.  One of the worse years of my life.  My dr insisted I go back on them.  I've never ever abused them.  No desire to do that.  Could that have anything to do with the intensity of your pain?

I pray you start to feel better soon!
Janice

1926359 tn?1331588139
by lulu747, Jul 31, 2014
Hi Janice-

Thank you.  Yes I've heard terrible things about Lupron and hopefully there is another option.  I'm not really having an issue with the pain meds right now.  My pain is so legitimately bad that I have to take regular doses of it.  I put road blocks in place by signing an opiate contract with my doctor, and originally my boyfriend was holding the pills.  However, that is no longer realistic as he sometimes works 16 hour days.  I have to dose every 3-4 hours and so I do.  Sometimes at the end of the day the pain is so bad it knocks me off my feet and I have to dose more.  I am not getting high, or enjoying the pills at all.  I made sure I was prescribed something that my brain doesn't 'like'.  It just deals with the pain and makes me nauseous.  I've finally listened to my doctor, my family, my partner, and my friends (including my MH friends) and am not worrying about the pain meds.  I need them, and I'll deal with coming off them once my surgery is done and I am able to heal.  It won't be easy, but I've done it before- twice- and I will do it again.  Although this time I will set up a comfortable taper plan.  I don't have another cold turkey in me (:

As for the benzos- yes I asked my doctor to help me taper and it's been going really well.  After being on them for 8 years and tapering for 3, I am nearly done.  Although I am questioning that right now.  I may need to prolong my use until my surgery is complete.  I am barely sleeping and the small amount I'm taking at night does help.  I am going to see my doctor this afternoon and talk about my pain management and perhaps extend my benzo taper until after the surgery is complete.

I am sorry to hear about your cancer.  Are you going through chemo?  What type of cancer if you don't mind me asking?
BTW- it is NOT relapsing to take pain meds for serious legitimate pain like you and I are going through.  I don't consider this a relapse at all.  I still work a recovery program and am not abusing my pills AT ALL.  In fact, up until 2 weeks ago I was taking less than what was prescribed.  Perhaps that is why my pain has gotten out of control.

I hope that your treatment is successful Janice and that you are able to be cancer free, and then drug free, and move on to live a happy and full life.
I am here for you if you need anything-
xo
Lu


1742220 tn?1331356727
by meegWpaw, Aug 01, 2014
Hey sugar,

whats up whats going on?  I am so glad you have Andrew what a great person he sounds like, with my lu's best interest at heart ...

yes I agree working ft in sept seems like the super wrong choice ...  your health is the priority

you ARE a force, even when you're not 100 percent well!  I am afraid to see you at your best !!!!  ::biting fingernails::  just kidding, honey.  I cant wait to see you well.  I cant wait for you to be out of pain and suffering.

well I just wanted to say hello.  hope you're doin aite babydoll

love,

Meegy

1926359 tn?1331588139
by lulu747, Aug 01, 2014
Hey Meegs-

I'm having a big ol' pity party this morning.  Andrew got home at 10 last night and left for work at 6 am this morning.  He won't be home till 1 am tonight.  I woke up to another sunny day but just have this pit of dread in my stomach.  I don't know who I am without work, ya know?
And then I checked my FB and saw that there is a two page spread in one of the paper's about the play I'm directing that opens in two weeks.  This reminded me that I am still doing great and creative things- just scaled down.
Honestly, I think when I got clean I switched my pill addiction for a work addiction.  I admit it now.

Hi my name is Lu and I am a work-a-holic.  Since I am of the mind that everything happens for a reason, I think this is happening so I have to break that cycle too.  I put all my self worth on how much work I produce.  And I produce a lot.
I know it sounds crazy but I'm worried that Andrew won't think I'm quite as amazing as he does if I'm not doing all this great work.
I'm kinda a small town celebrity and I have to admit it feels really good.  Connie wrote to me that sometimes we just have to be human beings not human doings.  She is right.  GD Connie is ALWAYS RIGHT!!!

Did you hear that Connie??  And I love you for it.

I know these are crazy insecurities and maybe I just need to take this time to work on those.  I need a good book to read.
Also, I really have to go to the post office to deal with some cable BS and I really don't want to.
But I will.
I wish I had a friend that could come take me to the beach so we could just sit and watch the ocean....But everyone is busy with their lives right now.  And that's okay.  Maybe I will have a burst of creativity.

The pain has deadened my creative spark but not killed it.
I need a new journal (not this online one)
I write in a journal every morning and have since I was 17 years old.  Reading my journal from the last 6 months is really sad.  It's just all about how much I hurt and how scared I am.

I teach my students that fear is healthy, and that when we find things that we are really afraid of that means we must do them.  Well, I'm really afraid to rest.  So I guess I should just do that and see what happens.  Silly I know.

I can get in front of a crowd of hundreds and do anything with no fear.  I go on auditions with no fear.  I take huge personal and creative risks with no fear.

Resting is what scares me.

I'm so weird.
xo
Lu

1742220 tn?1331356727
by meegWpaw, Aug 01, 2014
Hey Lu ...

I am so sorry your going to be alone for today and in pain.  wish I could be there to take you to beach.  wish you were here to hang out with !!!!

I have this mig so far it hasn't gone away.  better than when I woke up but I started dancing and it just socked more

I have so much to do, errands, clean this apartment its such a mess.

sorry.  im enumerating my tasks on your j!



yes, get a new j ... I used to journal longhand every day.  I stopped when I got married.  I have tons of filled journal books


WOW I would love to see some of your clippings and also real stuff live.  wish I could.  you sound famis!!!  your the bomb Lu.  you are so productive.

so yeah take a break.  you really really need to


oh man Lu I cant believe you are just finding out, sister ... CONNIE IS ALWAYS RIGHT!!!!  love you Connie.

yeah she just knows whats up man

she does her homework.  and ours !



I am reading this book by Denis Johnson to me he's a poet but you should check this book its stories and it has got my pure attention ... I am actually Reading a Book!  Jesus' Son.  its absurd, absorbing, intellectual, offbeat, hilarious.  try it

your not weird.  I know resting is hard.  but you absolutely need to.

I love you Lu

xoxo

Meegs

Avatar universal
by BritneyTaylor, Aug 01, 2014
As what I read what all u have been threw u r a very strong and very honest about ur past problems and I couldnt imagine the pain ur in but what I read that u write I look up to u even I barely know u at all. I hope everything goes well when u go to doc and I believe since u have already been threw he'll with coming off things u have a good idea how much it takes u and know the difference between real pain and what's in ur head. See I dont know the difference but since u do and be err n threw it if it happens I believe u can do it and also no one deserves to be in as much pain as u r an d not wanting to get hooked. But u do need rest and for ur pain to get releaved so I believe take what u need to be able to get the real pain go away unlike me dont know difference. U r such a strong person I would love u have the mind set of u I mean as what I read as of right now I look up to u.

1926359 tn?1331588139
by lulu747, Aug 02, 2014
Hi Britney-

Thank you for your kind words.  Everyone is ALWAYS telling me how strong I am.  It's funny, because I do not feel strong at all.  I guess it's hard for us to see ourselves as others see us.

I'm having a really rough weekend so far.  The man did not get home until after 3 am.  He had a hell of a day.  Poor guy worked 20 hours yesterday and he's back at it again for another two days.  I wish there were something I could do to make it easier for him.  The best I can do is not burden him with what is happening with me.
Last night I went for dinner at my parent's house, which was really great.  They are so amazing and supportive.  We've been through so much together, especially me and my illness and my surgeries and detoxes.  I feel the most comfortable there as they know EVERYTHING I've been through and I don't have to pretend with them at all.  It's comforting.  I was feeling okay and then all of a sudden I was not.  The butcher knife pain started so I left, because I knew I needed to take a large dose of drugs and I wouldn't be able to drive if I did that.  So I came home.  As I was walking in the front door this pain came over me and quite literally knocked me over.  I hit the ground, gasping in pain.  My upper abdomen started to twist and turn and my heart began to pound REALLY hard.  Then I felt a WOOSH.  I went to the bathroom and I passed a small clot of blood.  About the size of a loonie (that's Canadian money coin for those of you who don't know)
It scared me.  A LOT.  I'm not supposed to be bleeding at all vaginally, and haven't in weeks.  I've been bleeding from my bowel but only when I have a BM.  So it was scary.
My tummy continued to twist and turn.  I took my meds and laid in bed until it calmed down.  But I couldn't get on top of the pain.  Not at all.  I drank about 2 litres of water and stayed in bed watching a detective series called The Killing.  It's pretty good and shot in Vancouver, so I know a lot of the actors who are in it.
Andrew did not get home until 3;30 and he was concerned to find me still awake.  I was up until 5 am.  Finally I slept for a few hours but I awoke in more pain than when I went to sleep.
It's another beautiful, hot and sunny day outside.  Why couldn't this have happened to me in the winter???
I know it's good because I'm technically on partial vacation- but it is soooooo beautiful here on the island in the summer.  It's honestly the most beautiful place in the world that I've ever been, and I've traveled extensively.

I don't know what to do with myself today.  My mom is going to come over and help me clean up as we have a showing of our condo on Monday and the place is a mess.  Maybe we will take the dogs to the park so I can get some Vit.D.  My best friend is coming to cook me dinner so that will be good.

Anyways, that's my journal entry for today.  I'm writing it publicly on line because I still haven't got a new journal.  I know Meegs, I know.  I will get one today hopefully.
xoxox
Lu

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