I need a rant thread...

[andrea1]

We need a rant thread... I'm so ****** off with life!

I hate that I have something that cannot be helped. It feels so out of control. I hate that I am 20 years old and my life is already completely consumed by two diseases. I hate that I'm in pain every day, all day. I hate that I can't go out to parties with my friends because I have to be in bed and because it would take me a week to recover from just one night. I hate that I'm alone all the time in my house. I hate that my hip is killing me and there's nothing I can do about it. I hate that I have so many opportunities to succeed in life, but I can't because of my body. I hate where my life has ended up and I hate my mother for getting me here. I hate that people expect me to maintain such a positive outlook when they have no idea how much agony I'm in every single day. I hate that I have had to go through so much in such a short period of time. I hate that I have been forced to grow up so quickly and have had my teenage years, supposedly the best years of my life, taken from me by these diseases and the stress that led me to develop them. I HAAAAAAAAAAAAATE LIIIIIIIIIIIIIIIIIIFE. I need someone to hold me.

[andrea1]

Today in rehab, I was waiting for my pt to help me. I could hardly sit up straight because I was in so much pain and had been waiting for over an hour. I was literally fighting back tears and another trainer comes up to me and says, "It's okay to smile, Andrea. It's Thursday!" She knew how much pain I was in and clearly I wasn't in the mood. I'm expected to have so much light and be so cheery but I can't be like that anymore.

[GriffsMommy]

Andrea, It does suck sometimes. I know how hard it is to try to be happy when you feel like such crap. One of my co-workers made it sound like it was a crime that I was in a bad mood today. Sorry, I have a horrible head cold but can't take and decongestant for fear that it will make my IC flare worse than it already is flaring and I kinda had a fight with my hubby on the phone today. Somedays we just have to tell people, no, I don't have it in me today to be cheery and smile through it, today I am miserable. I hope that you start feeling better soon :grouphug:

[leelee88]

:grouphug: I can honestly relate sometimes I get in my moods and feel like just screaming at the world, but you know they would probably not listen and just think im:loco: .. But hun we here at the ICN do understand how you feel.. Life with IC affects all of us some in differant ways..I honestly think being single with no kids could be easier, but then I see people like you who are so young and without kids and see its no easier..I wish I had the answers for you but I dont.. But I can be here for you to scream and yell and vent all you want, because I do understand..(((((((hugs))))))))))

Ronda

[meme]

(((hugs))) Yeah, know how you feel. Sometimes I wish I could take those cheery people and....You can fill in the blanks!

[ads]

Andrea,

We can relate! Yes it sucks! Sending you empathy. Sometimes allowing ourselves to be angry and mad can help us process the IC and other chronic diseases situation, which leads us to a better place. Hang in there and don't feel bad about wanting to scream. Maybe you PT isn't good enough to be treating you if she doesn't understand chronic pain. She is the last person who should be treating you in that manner! (No I am feeling your anger just thinking about her remark! :mad:

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[andrea1]

It feels good to cry. I'm so tired of hurting all over. I just can't be a "big girl" about all of these things. I wish I had a "mommy" who understood me and would hold me until it all goes away. I never had that kind of a mother. I never had anyone to run to when I needed to be hugged and loved. God... I feel so alone and lost. Is this how I'm expected to live the rest of my life? How can I? Where do things go from here?

[ICNDonna]

:grouphug:

Donna

[Berkshire Road]

:grouphug:

[andrea1]

I just emailed my doctor. He's been the most incredible physician I've ever had- he's the only rheumatologist I've had that actually believes me and sees me as more than a chart. I called my stepmom to talk, but was cut short as she had her three little ones to tend to. I just bawled my eyes out, maybe that will help... eventually.

<<Day two of the worst hip pain I've ever experienced. I spent three hours in the training room today- two different PTs tried to help me, but absolutely nothing has relieved this pain (we tried electrical stimulation and ice, heat, soft tissue massage, joint mobing, among other things). Is there anything else they can try? Even while lying down with no pressure on the joint I'm in horrible pain. I started the prednisone, so we'll see how that works. I thought about going to the hospital last night, but figured that wouldn't do me any good.

I know that you strive to help your patients understand their bodies and honestly, I need help with mine. I've done everything you've asked me to do and I've taken care of myself to the best of my ability, so why is my body failing me? Since the medications aren't working, I'm desperately trying to find other methods that work to bring me some relief and I'm kind of running out of ideas. How are people like me supposed to be able to function in this world? What else am I supposed to be doing here?>>


Sorry I'm whining. I'm usually good at keeping things together, but it's been such an exhausting week and I don't see the point anymore. I hurt on the inside and the outside and I need help.

[andrea1]

How's this for irony: For years I restricted my food and did everything I could to control my body. I hated my body for being "normal." I wanted to be rail thin.

Now, here I am begging my body to be normal, but in a whole new way. I took my body for granted for all of those years. For so long it was healthy, perfectly normal and I abused it. It's amazing how the tables have turned.

[leelee88]

To give you some hope..

Things do get better with alot of people who have IC, they have not been cured because there is no cure right now, but they have found the right meds that work for them.. About 6 months ago I felt like I could just die..But now I am doing alot better with the meds my doctor put me on.. She kept saying one of my problems was I was depressed.. I was like DUH!! you would be depressed too if you just got married and could not make love to your new husband and now I find out I have this incureable bladder disease and just passed 4 kidney stones and my dad passed away around the same time, not to mention I lost my home in hurricane katrina with all my pictures and things that were very dear to me, plus on top of a few years back the kids dad comits suicide...SO YES I WAS DEPRESSED...lol But I made it through all that and you will to.. Just take one day at a time. If you dwell on the future it will just make things worse.. ((((((((((hugs))))))))))again.. sorry I just let it all out..But like I said I get that way sometimes..:cussing:

[Roxie2007]

Hi! I sure feel for you and all you are going through! Life is tough enough with out having to deal with such crappy medical problems. Life really can suck some times!
I've dealt with IC for over 25 yrs now and there's been times when I just wanted to stand in the middle of the street and scream at anyone who came near me! I don't think anyone understand our pain unless they have dealt with it themselves.
It does help to cry.....get it out and not hold it in because that just makes pain worse.
I'm sorry you got the brush off from your stepmom when you were reaching out for her. All of us here on this site are here for you......you can PM me or any one else if you'd like to chat, scream, yell or cry......we are here for you......just write. Big (((HUG))) to you! Roxie

[andrea1]

Oh my stepmom didn't brush me off... She has always been there for me because she has mysterious medical problems, too. She's my closest support, actually. She just had to go quickly, so I didn't really get to finish talking to her. I don't know where I'd be without her.

I still don't think I have IC. I think it's Endometriosis. I'm being treated for IC to rule it out, which is very frustrating all on its own. My uncontrollable pain is Fibromyalgia. I've had a horrible flare for the past eight days and it's been the most intense one I've ever had. It's still spreading, too. It just spread to my thumb joint and my elbow. I'm running out of joints... :cussing:

I really hope my dr. emails me back soon. He usually does around this time of night. Another thing this other trainer (not one of the ones that was helping me) said to me today really bothered me...
I was talking to one of the trainers, her name is Christy, and was saying how bad the pain was and that I emailed my dr. last night to see what I should do. Then Missy, the trainer that's really insensitive to me interrupts me and says... "What... Take more pills?" I kind of brushed it off, but seriously, I'm so tired of being known as the pill popper. It's not like I choose to take so many pills. It's not fun for me. The side effects are a ***** sometimes and it's insensitive comments like that that really push me over the edge. I'M SO SICK OF IT.

[andrea1]

Oh yeah, Leelee... this thread isn't just for me. I hope other people feel like they can rant here. It's a healthy way to manage anger, I think.

[Roxie2007]

That's good your stepmom is supportive of you. We all need someone.
Gosh your fibro pain sounds so miserable. I hope your flare ends soon. I know things look brighter when you aren't in the middle of a rotten flare. I hope tomorrow will be better for you........Roxie

[andrea1]

You're probably right. I've tried so hard to keep a positive attitude, but now I'm wondering how much of that was all on the surface. Like, I want people to think everything's okay so they see me as being normal, you know? I try to live by the "fake it til you make it" philosophy, but I don't know if that's the best thing for this situation.

[leelee88]

Its very helpful to let your emotions out:smile tee

[andrea1]

Yes it is- I can't say my pain is gone, but I do feel slightly better. I invite anyone else to come here to vent. It'll do you good.

Thank you all to everyone here at ICN. I appreciate you all so very much.

[SharonA]

Andrea...Soft, tender, motherly (((hugs))) coming at you. I am so sorry you are feeling so bad. I wish I could come in person, but since I can't, please except these cyber ones instead.

[andrea1]

Thanks Sharon.

When I woke up this morning, my pain wasn't as bad as it was the two days before. Maybe what happened last night was exactly what my body needed. Hugs to everyone and I hope you all have a great weekend.

[ABliske]

Well, in that case. I am in sooooo much pain. My bladder hurts like crazy! I have tried so many different things. The only thing that lowers the pain at all is MS Contin and I don't want to take any more right now because I'm at work and we're having this big Cinco de Mayo lunch and I have to go pick up the food with my boss and run all these errands around town. I hurt sooooooo bad. I might just take a 15 mg pill. When I had my lunch for secretaries day with my boss I was feeling kind of loopy and my eyes felt bloodshot I don't want her to think I'm a pill popper or anything. I know she doesn't understand what I've been through although I've given her bits and pieces of the story.
Owwwie!!!!!! And the food is going to be so yummy, but what can I eat. Maybe some tortillas and salad without dressing. The beans are heavy and sit in my stomach and make me hurt more and the rice is definitley out because of the tomato. They're serving beer too and I can't have one.
Well, I feel better -not physically, but psychologically. Letting it out does help.
i feel for all of you. Being in pain is such a struggle. I have definitley wanted to go to the hospital at times and felt like they wouldn't even be able to help me. At least now I have a diagnosis - although it's a dreadful one.
My mom isn't the lovey hugging type either. I love her very much, but she hasn't been the one for me to lean on with this disease. She doesn't understand it really. She bought me some sugar free candy thinking I could have it. I felt really bad because she was trying and I can't have sugar free stuff like that.
I hope you find some answers Andrea! We are always here to listen and try to help. ((((((((hugs))))))))))

[stac7_8]

I think we all can truly understand what you are feeling regardless of the fact that u may or may not have IC. Many hugs coming ur way!!!

I also feel that way most of the time and I have been like this for the past 3 yrs I guess. I have my good days and then I truly have bad days and then I have inbetween days. The last 3 yrs I have been having female issues. A dermoid tumor was removed along with an ovary and I have had ovarian cycst for sometime. After being in pain and having my last child my doc and I decided to just go ahead and do a hysterectomy.

The only problem is that I have still been having the same pain. So I got a second Op and what do u know I have IC.

So I have a total of 3 kids, but 2 are small age 3 and 7 months, my oldest is 10. It is just terrible cause I don't feel good most of the time and I can't play with my kids like I did with my oldest.

The worst part is that I don't think I could hold down a job either....just because I have to void so much and I'm in pain most of the time and have to take pain killers. I have tried to start up a photography business but it is very slow and coming. Mostly because once again I'm in pain....who isn't.

I have tried the IC diet and I have found that there are just some foods that give me problems....so of course I stay away from those. Trail and error right now anyways.

Well thanks for letting me rant it felt good. :smile tee

[kari1980]

Ok, my turn to rant now too! :-) I really feel for you Andrea, I really do, especially being so young and feeling so hopeless, but dont' give up. I haven't even really been on the boards much the past two weeks, because I myself have been in this 6 week long flare and it's just driving me crazy! I too am getting so angry, feeling like I'm trying to do everything right and everytime I seem to take 3 steps forward, I then take 5 steps back! I've had this disease for about 13 years now and still just can't seem to get a handle on it. I went to the ER for the first time ever, for this pain I'm having, thinking maybe it was an infection or something ,but it wasn't. Then finally got a doctor to see me last week and she kind of scared the heck out of me, telling me with this look on her face that she wants to do tests on me to check for Bladder Cancer! HELLO, that scared the heck out of me. I've never had a doctor use the "C" word with me before. I went for the sonogram on wednesday, and just going for that stressed me out and made my flare even worse. Then I go for some bloodwork and a possible Cat Scan. I'm just beside myself with this pain lately, and I have a wedding to go to in a couple of weeks out of state, so the flying part and wedding are stressing me out to because of the pain. I'm just getting so angry about it lately. So I totally understand how you are feeling and sympathize with you. I hope your continuing to feel alittle better. I'm SO sick of taking pain medication! Take care and hang in there,

Kari

[ABliske]

Stac , oH that is terrible. Do you feel like you would have still gotten the hysterectomy if you'd been diagnosed with IC first? I thought all my problems were related to my uterus before I was referred over to my urologist. I almost went on hormome therapy and even considered a hysterectomy when I was having all this horrible pain with no explaination. I am so sorry you have been through all this.
Your kids are lucky to have you whether or not you can play with them a lot. They have each other too!! I would love to have children. I'm almost 27 and just don't know if I will be able to handle a pregnancy. I sometimes with that I had a child with my husband right after we got married when i was 24. It's not good to have regrets though. And really I'm sure it is very difficult to have little ones with this condition.

[ABliske]

Kari, will you be getting a CT scan? I had one of those and I hope you have an easier time with it than me. You have to drink a lot of liquids, so make sure to empty your bladder as much as you can before you get onto the table to get the scan. I won't take long, but i felt like my bladder was going to burst.
Try not to worry about the suggestion of cancer. I think your doctor is probably just wanting to rule out any other possilbe causes of pain and you should be fine. I wouldn't even worry about it. Sometimes people say you should prepare for the worst, but i think it's highly likely that the pain is the IC on its own. Best of luck!!! I will be thinking about you.

[kari1980]

Thanks Abliske,
I didn't know you had to have fluids for the cat scan? I thought it was just like an X-ray, so thanks for the warning. I'm really trying not to worry about the "C" thing, I know it's probably just the IC pain, just much more intense this time for some reason, but it was just scary hearing the "word", you know? I'm sorry your having such a terrible time too right now, it really stinks. I've been dealing with this for such a long time now, that sometimes you just get worn out from it, mentally and physically. This is just one of those times for me, but I know it will pass eventually, for awhile anyway. Thanks for the info and feel better soon,

Kari

[ABliske]

When are you getting the scan done?
Annie

[andrea1]

I'm glad you all are able to use this thread for your benefit

If it makes you feel any better, when I saw the uro a few weeks ago for the first time, he tested my urine for signs of bladder cancer (I didn't even think that was possible) without even talking to me about it. He just said, "Well, we tested your urine and this isn't cancer" ... The other are probably right- it's just a precaution. I don't blame you for being freaked out, though. I'd probably feel the same way, but just know that it may not be as bad as you think.

I'm sending a big 5'1" hug to all of you who are hurting (emotionally and physically). I hope things get better soon. I know that for me, the ICN helps me to feel less alone in this world. It's so great to have people who can empathize.

[leelee88]

You did good Andrea with your ranting.. This post gave a few of us some reason to rant.. I know it made me feel better to get it out.. You know we do need a thread where we can just go to and rant..LOL.. Sometimes it just feels good to get it all off our chest:smile tee

[kari1980]

Hi Annie,
I'm not sure if they are doing the Cat Scan yet or not. She said she would see how the sonogram comes out first I guess. Hopefully everything is fine and I won't need it. I guess I will hear from the doctor next week on the results. I just want to get rid of this pain! I hope you all are feeling alittle better this weekend, it's so nice to have somewhere to go when we are all feeling so down and NO ONE understands it but us!

Best to all,
Kari