Grumpy day

[MakinIT]

Well...I'm just glad these days are geting fewer and farther between. I was in lots o' pain today, was cheerful most of the morning but began to fade by afternoon. I saw my PT this afternoon (for the first time since my procedure...I cancelled and earlier onethis week) and I was grouchy, she had me just do tai chi and some yoga. Then she had me lay down to do some guided imagary and halfway between "flying from the roof to the trees" I started cramping big time. I was bawlling but the PT got me back into the relaxed state without me actually waking up. All I knew was that my gut was throbbing and back hurt and bladder was going bananas when she brought me back. She gave me some heat for a while. Then I saw my chiro, simply because my pelvis is so outta whack. He was very gentle and kind (always is....we are more like friends) and I just bawled on his shoulder when he asked how I was.

I've had those thoughts again of being better off drifting off in my sleep than waking up to this pain anymore. I've managed to put these thoughts aside but it cropped up again today. I hate this, hate this pain, hate whining about it. I tried to explain it to my husband and he did his best to comfort me but that is just not his strenghth..pretty awkward with it.

Sorry to be so depressing...had to get it out, now I feel a little better. I'll be better again. It's just trying to get over these stupid humps that comeup.

Thanks for listening.


Tracey

[Teri]

{{{{{Tracey**********We all have those days....today I stopped in at my old place of employment and it killed me. I can't even sit long enough to go back to work part time and it was just another reminder.
Our husbands don't understand when we talk that way because they love us and they figure that love can fix it all. It helps, but it can't fix it. Feeling useless is the worse feeling in the world. I know tha I have been isolating ALOT and today forced myself to get out of the house but the minute I got home, I was back in my pj's and in my bed with my heating pad......
I don't know when our answer's will come but I sure as hell keep praying for then~

I hope your day ended better than it started.
lots and lots of warm gentle hugs~

[MakinIT]

I slept for awhile after I posted that note last night. I got up, watched the Ducks lose...(Bummer) and talked to my husband somemore...he asked what the problem was (in a gentle way) I was blubbering (again) and just listed abunch of words: lonely, useless, tired of pain, tired of life, etc....You all know the drill. anyway, he apologized for always being gone..said he needed to have fun too, and Iwas always sleeping or out of it, or hurting...so...he does go out and do stuff and leave me by myself..with my argueing children.

Oh well...feel a little better this morning..Had a good cry yesterday. I think we all just need to do that sometimes. I also think I'm stressed waiting for SS stuff, and my acceptance letter to PSU's vision program and if I can cut the demands of that program. Ugh...being human and full of self doubt really stinks. The worst part about this disease is that it has taken my confidence.

Thanks again for listening....

Tracey

[dyno]

Hi,
Just wanted to say I hope you are having a better day and yes, crying is good for you sometimes. We are here for you anytime you need a shoulder or an ear. grouphug kissing

[MakinIT]

The best thing in the world for me since getting this disease is finding this board. Thank you all for your warmth and support. I do having caring medical folks but they are paid to take care of me. (My chiro has called a couple times, and didn't charge me for yesterday's help) Other than that, no one understands. You all are so awesome.
I've noticed we are all very different in age, religion affiliation, political affinity; yet there is a warmth that just reading the words addressed to me gives me. Thank you all. You are the best, I turn to you all for your wisdom, understanding of my humor, and just understanding my anger. I know I'm not going to die from this. But I have to live with it and it hurts, and I often say to myself "I've been a generally good person, a few slips on the path of life, but who hasn't at 39 (almost)" I've suffered a years worth of paralysis, lots of surgeries in my joints, near death from allergies, near death from child birth, Daily brain bursting migraines for 18mos, blah blah blah...WHY (and I know we all say this...) and hysterectomy that screwed me up for good. Most of the time I refuse to pity myself and I'm trying to figure out what drug I'm forgetting to take that keeps me even keeled but maybe this is normal...I thought I went through my 5 stages of grief...but I seem to have gone backwards. I wish I could talk to my counselor now but I have you all!! Ugh...this just sucks. I hate being emotionally miserable. Its not me. People know me a the "cheerer upper". I make other people laugh. Now what do I do? ***** about my pain...who wants to be around that? So, I ignore it when I can and then have a breakdown....Wow...I think I just had a breakthough and kinda understand why I feel this way...Who needs a counselor at 180 bucks an hour?

Night all...I'm very tired and wanting sleep.

Tracey :cool:

[kelly McC]

I'll be around you if you dont mind a buddy in pain Just trying to get yah to laugh ! I sure hope you feel better after you rest ! grouphug
Kelly

[MakinIT]

Thanks Kelly : I do feel a little better today. My 8 year old and I went and got our hair(s) cut. She looks cute...I look, well, like I need to recolor my hair....Its all brown again. (I had highlighted a blonde) Only now Grey has shown it's lovely sparkles more obviously lmao oh well. I feel old. Might as well look it too. I have to take my PM nap now. I am tired. I hate this. I wish I could get through a day without naps. Humph. Oh well...I'm pooped and ready to lay down...I"m sure I'll be on later. Thanks much.

Tracey

[khouse]

Tracey,
Well I certainly know where you are coming from. I hate this disease. Just keep plugging and keep going, I know that is hard to do but hopefully soon you will find the treatment that will work for you. I was in the same boat just a few weeks ago and went to my 3rd uro and eureka I found the golden egg, he is absolutely wonderful and is the first doc that will treat ic pain. He full believes that even though it is "chronic" pain it is still pain, and thinks that if pain meds help the quality of life then he has a responsibility to use them. Praise the lord, I had lost my life to IC and was having to sit on the sidelines and watch everyone else participate. It has been the best 3 weeks of my life! He did some treatments in the office and started me on new meds. I will begin physical therapy in about a week and a half, I have to drive almost 2 hours to see him and for the physical therapy but it will be worth it to finally get someone to treat this wretched disease. Hang in there and keep searching for the treatments, meds and or doc that will help you! I am praying for you and hoping that you get some relief soon!
Love,
Kim

[MakinIT]

Thanks Kim...Feel like I have a good medical team but they are human and scratching their heads. Right now, they look like monkeys to me.

I have to go get a crown tomorrow of all things. CRAP. Decided to double some valiium (Actually I ran into my dentist and he highly recommends it because he knows how much I;ve been through and how nuerotic I get in the dental chair.) Taking my IPOD too tolisten to music.

thanks for your words. Maybe tonight I can try to get close to my hubby...It's been since Valentines...Last year!!!!

Tracey

[Teri]

Tracey~sounds like it's time to throw a pity-party. I just love those, when I put on my fav pj's, don't bathe for a day, don't answer the phone and stay wrapped in my favorite blanket and pillows and pretend that there is no world outside of my bedroom walls (and the bathroom walls) and I REFUSE to feel guilt.
This site has done wonders for me. When I first found it I was so full of anger that I couldn't say a nice word to anyone unless there was a gun held to my head. Now, I can go with the flow and that happened when I started throwing 'guilt' out the window. IT's amazing how guilt can fill you with anger and rage. I even told my husband tonight that I was don't feeling guilt about 2 of our adult children that are not speaking to us. It's been eating away at both of us for months and I finally said "SCREW IT." I am soooooooooooooooooooooooooooooooooooo sorry they think they had such rotten childhoods but they are over 30 years old with it...get on with it, deal with it, it's NOT my fault anymore When the thoughts come back into my head I remind myself that it's not 'mine' any more and let go of it. But, I couldn't have gotten there without these boards.
I'm still working on acceptance. I do have a really hard time because I am unable to work and I think that if I can ever let go of that struggle I will be much much lighter because it really does weigh me down. I can't have a standing job because of back pain and I can't have a sitting job because of back pain and sorry, I ain't got the body anymore for a horizonal job scream wink scream so I keep working on letting it go and NOT taking it back.
Stick with us. We really are a bunch of winner......we just need to be reminded by our IC sisters and brothers sometimes......

sending tons of fuzzy hugs~

[MakinIT]

Don't think I wanna know kinda horizonatal job yer talking about eek lmao Just finished my first part of my crown job. Of course, he couldnot get the proper imprint so I'm having to go back an extra time...What a pain in the keister. Meanwhile this temp feels icky in my mouth and I I may have to have another done on the tooth in front of this one!! ( All from grinding my teeth at night. cool.) I have a nightgaurd...spent $600 (my insurance) but I spit it out in my sleep so it does me no good.


Thanksfor the thoughts...guess it's normal to go up and down, Just bummed now.....take care T

[Julie Smith]

teri,

reading your post was so helpful. guilt, pain and not being able to work is eating me alive. depression is high and i feel so angry, like why have i been so sick for over a year? i'm so lonely and isolate because i'm so embarrassed about my illness. i want my life back and to be pain free. no one but my therapist and one friend understands.

thanks again. grouphug angel

[dyno]

Julie,
You hang in there too. It does take time to come to terms with our medical situations. Hopefully over time you can find a treatment option that will work for you and you will be able to do more.

In the meantime we are all here for you. If you have any questions about treatments or just need to talk.

Sending hugs to all, grouphug

[MakinIT]

Julie:

Of all things, I am not embarrased about this disease..Yup...it's painful, sucks, and unfortunately sticks us into uncomfortable and lousy positions...I've removed myself from what's happening in those areas, when I have to endure another of those FUN treatments. It's just a part of your body...that's it. And the only way for them to help you is to go through those bodily orifices. I don't especially dig it, but I'm not going to be upset it...(Hey, they chose the profession of looking at that stuff so it is their job... lmao ) anyway...Please just realize, I'm trying to lighten the mood, and lighten your approach to the treatments, in terms of being embarrased. Personally, I worry more about the pain. That's what my counselor works with me on before a big "treatment" is how to deal with the pain during the treatment. (heck today with the stupid crown I had my music, took two valium and still yelled at the dentist...especially when he said two teeth needed crowns) I guess you either get used to it or more sensitive and I'm definately in the second case. Anyway, have a great day...I'm hurting today, again but not too bad..maybe my mood will improve as the week goes on. I'm irritated because awaiting stuff in the mail. (SS, school, etc..) I hate it.

Take care, especially you Jessica! (BTW Jessica, I see you are from Tampa, My best friend moved there about 6 years ago and when I visit her we always go to the Palm Pavilion...on the beach in Clearwater...have you ever been their and had a Pina colada? Take your buddy there and have one, if your meds allow..they have the best Pina Coladas I have every tasted...AWESOME)

You are not alone....I'm here, so is everyone else, we just can't touch....sometimes I really need the touch of someone who is living this BS..
Tracey

[MakinIT]

Teri : I just reread your reply...I'm very sorry your kids feel that way. I was raised with an older sister with brain cancer (and it was in 1970) She was left disabled and all the attention and family resources went to her. I was sort of there. My mother has told me, since becoming an adult, that she feels so guilty about the manner in which Iwas raised. I have to occasionally remind her I've turned out just fine (I'll twitch a little just for a joke) and with a pretty big heart because of sacrifices I learned to make as a kid. It is NOT your fault, these are things beyond your control...(Its what I tell my mom too) you do what you can...I just hope my children don't remember only their mother sleeping and being grouchy. I try to hug them daily and tickle them, and give them a kiss. I tried to play (rough house) with my 8 year old 2 weeks ago and seriously physically regretted it, but it was a great emotional moment for us both.

You do with what you've been given and your children need to understand that. They need to grow up (I'm sorry, I hope I'mnot out of line, I'm just tired of people my age still acting like immature brats) Eventually they will. An illness, is an illness. I almost feel like since I'm not dying everyone expects me to be fine now (geez..you've off for a year...when are you getting off your butt..."grr") I really get irritated. Like there's a timeline or something. "ok..you've had your year of chronic pain, it's done now." Very annoying.

ANYWAY...Best to you Teri....I'm sorry about your children. I can't even imagine your pain about that. You seem to be a good person.
Not having your children has to be very painful and helpless feelling.

Take care: Tracey