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Posted 12/11/2009 6:16 PM (GMT 0)
I've been having a real bad week or two & I know that many of you have been having a hard time as well. So I thought I would create this thread where we can all vent together -- not so that others can pity us, etc., but so that we can just get some of our troubles off our chest. Pure venting about anything you want. It's kinda like screaming into the woods, but this time we're screaming into the computer. So join the party, maybe we can make something good come out of our troubles.

I'll start:

I'm so sick of not getting any sleep because my pain keeps me up all night & wakes me up if I do manage to nod off.
I'm tired of waking up in the middle of the night crying in my sleep because of the pain.
I'm tired of seeing so many doctors yet getting so little answers.
I hate that my body has some ridiculous biochemistry & no medications help my pain.


Okay, I feel a little better now. I'm sure I'll have more to add later, but for now, it's your turn. Don't be shy. Ready? Set? VENT AWAY!

Skeye
Posted 12/11/2009 7:19 PM (GMT 0)
Skeye


I am with you on the waking up in pain in the middle of the night, for more than a week now I have been waking up at 3 AM with severe neck pain and muscle spasms by the lower rib in my back and if that is not enough lately I have been having heart burn besides! I take the Percocet and chew up a couple of Gaviscon tablets and then pace the floor for an hour or so, or sometimes I get on the computer and wait it out till the meds take affect! I am tired of it! It is the same thing every night and I get less and less sleep! I don't know what is going on with my neck but it hurts to turn my head and my hands keep going to sleep! I get Xrays and see the surgeon this Tuesday for a follow-up! maybe he will have some answers for me then! I have to much stuff to do to be bothered with this, I have christmas cookies to bake and more pecan brittle to make, and I still haven't finished putting the new LED lights on my tree, let alone decorate it yet! And I still have christmas shopping to do for my daughter and her husband! and I don't feel like doing any of it! Plus I am suppose to be looking for another place to live! Which I haven't done yet either!!!

I don't know if I feel any better, but it was nice to vent! Thanks for starting this thread Skeye!





White Beard
Posted 12/11/2009 7:39 PM (GMT 0)
I am sick of others not understnading (or even knowing) what I go through every day.
I am sick of feeling like a tin man
I am sick of hearing my bones go crunch crack creak.
I am sick of my GI issues

thanks for the thread, may add more later.
Posted 12/11/2009 8:11 PM (GMT 0)
Skeye,
Thanks for this!!!

I am sick of being sick. Sick of new problems cropping up. Scared about the future regarding my health and money and health insurance and TIRED of feeling SCARED! Angry at not being able to just get up and find a job and go to work and feel like a normal person again.

And I'm already sick of snow and winter! If you watch any of the footage of the snow south of the Buffalo area that's not far from me! I shoveled twice last night just to put the garbage out, and now I've got to shovel my way back out to get the empty can! There is a foot of snow on my deck and that's after two shovels! It's not even Christmas and NO, IT'S NOT PRETTY!!!!!!

Whew!

PaLady
Posted 12/11/2009 8:38 PM (GMT 0)
   

            PaLady you said it all for me...word for word! so I just copied it and pasted it here! ....hope you don't mind! :)   I did modify a few words though!

I am sick of being sick. Sick of new problems cropping up. Scared about the future regarding money and health insurance and TIRED of feeling SCARED! Angry about going to work and not feeling like a normal person...and unable to perform my task like I used to! Madder than all get out, that I can't ride my Harley....and Love my wife in the bedroom like she deserves. and ....most of all..... upset to see my friends here struggle every day...every hour...every minute....every second....because of some idiot Dr or PM who can't seem to... or is to scared to do their job! God bless everyone of you this season!

     Michael

Posted 12/11/2009 8:48 PM (GMT 0)
I'm sick of always being referred out to another doctor...
and I'm danged well sick that insurance companies won't cover more and yet they can get a good profits...
Hey Skeye, nice to see ya, soft hugz...
Posted 12/11/2009 11:21 PM (GMT 0)
Thanks for this thread.
I am sick and tired of these painful headaches.
I have never known such pain ever!!
I can't understand why no medication will help my pain (and many of you are in the same boat, so why is that)
Why was I chosen to suffer like this. I am a good person.
I hate that i have lost the person who I am.
I have lost friends because they don't understand what a person with chronic pain goes thru!!
I hate that I have to be on long term disability, I really miss my job!
I hate waking up in pain, crying and holding my head!!
I am scared that I may have to face the fact that this paiin is with me to stay!!
Suzane.......... next person
Posted 12/12/2009 12:00 AM (GMT 0)
Skeye,
You are a DARLING!!! How cool is this> A venting thread> Way Cool my Sweet Girl!!
OK, I'm sick of having to pee all the time!!! Pain sucks, no it really sucks but having to pee interupts my days and nights constantly. I almost missed my son Pete getting off the ship in Norfolk Va. because I had to make my way through about 1,000 people who were behind us to get to the port-o-pot!!! Then back through them to the very front w/ so many of them giving me looks like > You line cutter!!! Then that night my son Pete Jr. stayed w/ us in the motel room Everyone fell asleep around 11:00pm and I was up before midnight to pee. I counted 7 more times, up to pee before 4:00am when I finally got up in horrable pain from standing and walking too much that day. I ended up taking my meds and sitting in the motel office drinking coffee watching tv w/ the night desk girl till the sun came up!!
Peeing and pain, what a combo??? Then all day long where ever we went, I would have to rush off to the b/r as soon as we stopped! No, there are no pills that will help me! I know everyone has seen all those commercials on tv, those pills are for men with a prostate! I lost mine and they messed up my plumbing > scare tissue, Y'all know about scare tissue!!!
Datz all Folks!! No one more wine here> OK just one more!! Sorry> My eye is getting worse. The hole, ulser or what ever the "H" it is is getting bigger! It was on the white of my eye and now it has grown onto part of the brown/green part. Geeze! I go back to the "eye-guy next week. The drops help a little w/ the pain but not w/ shrinking it yet!
OK now I'm done!!!
Thanks again Skeye, your the BEST!!!
Love, huggz & kisses to all my peeps! Yes, even the guys> no I ain't one of them funny guys (not that it would matter if I were!!), just an Itallian!!!
Posted 12/12/2009 12:06 AM (GMT 0)
OK, I lied, one more! The biggest one of all!! Sitting here reading all of Y'alls posts and knowing that there is nothing I can do to help any of you! When I win that lottery, there is going to be one hell of a venting party> in person!!! We'll rent a cruise ship and party w/ each other till the cows come home!!! Knowing us w/ our sleep hablits that might take days!!!
OK, that's it for now!

Your whining brother> Pete
Posted 12/12/2009 12:19 AM (GMT 0)
Again, thanks for this thread Skeye.
I am sick of being sick and not feeling like myself.
I want to be active again with my grown daughters and grandkids. My baby grandson is almost 3 months old and I can hold him but can't take care of him without someone else here because I can't carry him.
I had neck and lumbar surgery and bilateral knee surgery so I would feel good and be able to get around and I'm still not kickin it like I'd like.
I'm tired of going to bed in pain and waking up in pain and not having something that will kick its butt so I feel like I want to move around.
I'm tired of getting up in the middle of the night, hurting and having to take care of my ileostomy pouch or fix a leaky wafer.
I always took care of others and now I'm the one that needs taken care of and that just isn't acceptable to me.
I don't think it is fair that I have an ileostomy because of c-dif and uc when I was just trying to heal a back wound that wouldn't heal.

I am happy that I am alive and that I've found all of you in CP, love to you all.
Posted 12/12/2009 12:24 AM (GMT 0)
Pete
Did you ever get a sleep study done for sleep apnea? You had mentioned that you needed to get that checked out once before!The reason I ask you about that, besides being tired allot and possibly snoring ( although you don't have to snore to have sleep apnea) Peeing all the time when you should be sleeping is another symptom of sleep apnea! Before getting VPAP treatment I was getting up ever hour or two to go to bathroom and I was doing that all night long! Once I got on the proper treatment I can go all night long without having to get up and go! Just something for you to possibly think about!

White Beard
Posted 12/12/2009 12:40 AM (GMT 0)
 So join the party, maybe we can make something good come out of our troubles.

        The last few weeks have been very hard.

 

  I wish the eye surgeon never told me my vision loss is progressive and that the soft tissue is degenerating.

 

  I wish the spine specialist could stop my spine from degenerating.

 

  I wish the endogronologist could stop the bone loss.

 

  I wish the hearing loss wasnt progressing at such a frightning rate.

 

  I wish I could eat solid food.

 

  I wish I could see.

 

  I wish I could walk and stand normal.

 

  I wish I could have the freedom to simply "Be"

 

  I wish more than anything in the world that my daughters and husband didnt have to witness this.

 

  I wish I had a mom to hug and hold and tell I was frightened.

 

  I wish I wasnt afraid anymore.

 

Posted 12/12/2009 2:09 AM (GMT 0)
First off thanks Skeye and I'm sending out some BIG HUGS, its making me feel really sad reading these posts and Dani yours made me cry. You're not alone honey, we're all here barracking for you.

I had my infusion yesterday and so far NOTHING has improved. I was hoping I'd be a miracle cure, it'd be nice it is Christmas afterall!

My knees and wrists are pretty swollen now and lately my elbows, feet and ankles are joining in. Making it so hard forChristmas shopping and wrapping presents.

I just want to sleep too, the prednisone has taken the edge off my pain but it wires me. I sleep in two hour bursts and I am oh so tired.

Plus I'm swallowing the HRT and still getting hot flashes!

Best wishes everyone, golitho

Posted 12/12/2009 2:10 AM (GMT 0)
Wow! I can see reflections of myself in so many of your posts - the fear, the frustration, the anger, and of course the pain!

Sending big hugs to you all. I wish that none of us had to go through this!!!! What did we ever do to deserve this?
You are all such STRONG beautiful people.

Okay, now for some more venting from me:
I hate how my pain has taken over so much of my identity, despite my best attempts.
I hate having to try to cover up my pain & pretend that everything is okay when it is not.
I hate how people always ask me how my eye is, even though I know that they are just trying to help.
I hate getting my hopes up & then being let down.
I hate not being able to do my school work because I can't read b/c of my vision and/or pain.
I hate that I can't read books any more. I really miss reading for fun. Audiobooks and my talking Kindle, while nice, just aren't the same.
I hate being afraid of my body.
I hate being afraid of how my pain will effect me in the future.
I hate being afraid of never being able to manage my pain because I've failed every treatment to date & there isn't much left to try.
I hate being depressed because of my pain.

phew, well that's it for now. I'm sure I can and will come up with more later. I tend to internalize everything.

hugs to all. hang it there! we'll all get through this!
skeye
Posted 12/12/2009 2:30 AM (GMT 0)
Skeye this is awesome and was so badly needed only none of us knew how to start it.

I am sick of being sick every single day when I wake up. I wake up to severe nausea every single morning. Now some mornings its dry heaves and  on the pot w/trash can in my hand, both ends trying to go, ugh I hate that.

I am sick of swollen legs that wake me up because of the pain, it is very painful trying to stand on them when I wake up.

I am sick of raw, split skin on my hands and feet.

I want to eat like a normal person eats every day. Not attempt it one day and then pay for it for 5 days. I am sick of gut problems from GERD to crohns/colitis issues.

I can't stand not being able to smell food without wanting to hurl, or be able to eat and not hurl. I need an appetite badly. I am afraid I am going to get in bad trouble at the rate I am going.

I hate not being able to sleep more than three hours in a bed and not wake up in pain because I moved or turned in the bed.

Yep, I am sick of being sick just like the rest of ya.

 

Posted 12/12/2009 3:49 AM (GMT 0)
Skeye,
Like others have said, I have to repeat - thank you for starting this! Your most recent post hit some real nails on the head with me, most notably "I hate being afraid of my body." Feeling so out of control, and not knowing what's going to be around the corner. Body's shouldn't betray us, but then life's not perfect.

Speaking of feeling betrayed or abandoned, allow me to add feeling those things about most of my health care providers and the health care system in general.

Dani - I want to come hug you! I can't be your Mom, but I sure open my arms to you and you can come cry on my shoulder, and I'll do my best to comfort!

((((((((((((Dani)))))))))))))

PaLady
Posted 12/12/2009 5:52 AM (GMT 0)
A vent and rant party. Sorry to show up so late. I am sure we could all fill up multiple pages. I can't say that I am sick of doctors because I have been fed up enough I quit going. I was last at the Dr in July. Don't miss them a bit. I think they are at least half the problems. They must feel the same because my meds get filled without a visit.

I am tired of not knowing who I am any more. I try and show the jovial, hard working, caring, giving and always there for everyone kind of guy. I get tired of people sucking the life out of me. i know its my job and my life but this is my vent and Skeye said I could do it. I was honored for my work and people were clapping etc and all I wanted to do was go home and crawl in bed because the pain was more than I wanted to handle. Its more than any of us want to handle. I am sick of having to work every day even though I am on vacation.

I love my ministry but hate my job. Raise more money, travel more, speak at more events, take more teams out on the street to work with the homeless, addicts and alcoholics. I can never please those who believe it is my responsibility in life to make them happy. Poop on their hapiness. Ok I'll repent for that later. They may fire me soon for not raising enough money and being a drug addict. Like we all love to take the medication that medical experts say will make us feel better anyway. 

We are sick of we are not, sick of who we are, and sick of knowing that the more doctors we see and the more meds we take we don't relief. We are sick of lost identity. Sick of lost abilities. Sick of limitations. Sick of that you are all sick of. Sick, sick sick...

But thankful that we have a place to vent, thankful for people who will listen without having to fix us, thankful that there are others who understand.

Post Edited (fatherjohn) : 12/11/2009 11:01:51 PM (GMT-7)

Posted 12/12/2009 5:56 AM (GMT 0)
Gosh you guys, you do put things into perspective. I am so amazed by how happy and cheerful you all still manage to be. *BIG HUG* to all of you. Alright, onto my rant.

I hate that I let my classmates down. I was elected chair of our biggest project of the semester, back when I had my pain mostly under control. But because of being with a therapist that hasn't been as effective as the one back home and falling again, I feel like I failed them, and myself.

I really hate that my classmates just don't get it. Some of them try, they really do, and one in particular has been great, but only my roommates have seen quite how bad it is, so I don't think anyone else really understands, and I can tell they are really frustrated with me for missing class and being behind on our work.

I am afraid that if I do take next term off, I will never get the chance to go back to graduate school. I'm in the top program in the country for my field, and I'm scared that if I leave I won't be able to come back.

I hate that my pain has become my identity, and that nobody besides my amazing boyfriend quite seems to get it. I was raised in a family that's very go-get'em and doesn't ask for help, so its hard for them to understand that there are days I can't get out of bed.

I hate that I'm afraid to walk outside. A fall on the ice is what started all of this, and I am terrified of falling again and setting myself back even further.

I hate that I don't even feel like I could handle planning my own wedding, so have had to ask my boyfriend to put off asking for awhile.

I'm frustrated that it takes so long to get in to see my doctors.

I'm angry that even walking for an extended period of time bothers my shoulder. I used to play volleyball and basketball and tennis and I love dancing and just being active, and I haven't been able to do any of that. Add to that having to eat a full meal whenever I take my heavier meds, and I'm unhappy with the way that I look.

Okay, whew. Sorry bout that. Thanks, Skye, it helps to just get that all out there with other people who actually understand. I hope everyone has a great, pain-free weekend!

Jenna
Posted 12/12/2009 6:17 AM (GMT 0)
This is a powerful thread.  I don't feel alone in my fears.

I hate MS.

I hate having MRIs just to find out how much my disease has progressed.

I hate having to give myself shots every single day.

I hate waking up and having to check to see if I have lost anything during the night (like the ability to move or see)

I hate not picturing my future.  I refuse to think about where I will be in five, ten or more years.  It won't be where I am now.

I hate chronic vertigo and having to watch every step I take.

I hate worrying about how to pay for this disease if I lose my insurance (copaxone is $2,800 per month)

I hate worrying about whether or not my med. therapy is doing its job to slow down progression.

I hate feeling guilty about hating this disease when I should be thankful that what I have is not fatal.

I hate not wanting to live a long long life. 

I hate know that I will have this until I die.

 

Posted 12/12/2009 4:08 PM (GMT 0)
I hate it that now I am going to be losing my rx card next month permanently, my drs are looking at a long list of medications and asking me what am I going to do. hell, I have no clue, so my response is, I guess I will be really sick all of the time. Many of my meds are maintenance meds to ward off the evils.
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