It's so hard to have hope

[GriffsMommy]

I have been so hopefull that I would start to get better since I started to see Dr. E. I have had a few days without pelvic pain due to the pudendal nerve blocks he is doing and I was starting to see some light at the very far end of the tunnel.

Then I make Christmas Eve dinner for my family, and an easy dinner at that. It was just ham and sweet potatoes that had to bake in the oven. I steamed the green beans and put the rolls in the oven. I also was up and down making sure there were snacks for everyone before dinner. Most people take these easy things for granted. I on the other hand do these simple things and then can barely move without being in tons of pain by the time everyone leaves.

I had to get up Christmas morning and then go back and lay down again once the presents were open because my pain was so bad again. Now today hubby and I had sex for one of the first times in a very long time. My dr had us not have sex for 6 weeks to try to get my pain under control. He said at my last appointment we could try if we took it easy. Well we took it easy and I feel horrible!! My frequency and urgency or horrible, the worst it's been in awhile and I am having tons of pain.:cussing:

I try to believe my dr when he says that I'll be feeling better in a couple of months but I'm so scared that I won't. I can't do the things that normal people do every day without having tons of pain. I feel like I'm back at square one and I just want to scream and cry. I will bring this up with my dr on Friday but man does this suck! :mad:

Thanks for another rant. Maybe it's the Lupron that's making me so low today but I feel like I have made no progress whatsoever. :confused:

[mimimama]

Christine~

First, I am so sorry. you know I understand. I was in bed most of the day yesterday too. My heart is with you.

Perhaps it is time for a controlled release pain medicine. this helps me TREMENDOUSLY. PM me if you have any questions.

This doesn't get easier, that's for sure. I think we learn to cope after time. So our coping skills improve and some days we actually feel good:bow: and for those days, we are so grateful:pray:

IC has changed me alot. I certainly have learned to embrace my "good" days and run with them!

How is PT going? My PT is very gentle and she seems to really believe in me. I am also starting the PN blocks..perhaps next week. You are in my thoughts and prayers. I know things are tough and you still have to function even when you feel rotten. That, to me, is the toughest part.

[dancemomof2]

Just remember you still may have bad days even with your new treatment. Hope you feel better soon.

[Missmissy]

let me start off by saying I am sorry you are in pain. I have had a mild flare for the past 3 days. I checked myself to make sure it wasn't a uti and it wasn't just a flare :-( I think it was food related. It's hard not to eat things you should'nt around the Holidays.

But enough about me....
When I catch my flares in time, Over the counter Cystex (Rite-aid pharmacy has it) helps me alot. I even take it after me and hubby do the deed. It has a mild antibacterial medicaine in it. Plus it doesn't turn your urine Orange like pyridium does.But if I don't take it right away, It doesn't do me much good.

I hope you get better soon:pray:

Melissa

[mimimama]

Yeah know...I think the fact that I ate Ham for two days in a row didn't help matters at all! There is so much salt and chemicals in it and I am sure that my relatives didn't buy the kind without all the nasty stuff. Ham is expensive enough..oh well.:rolleyes:

[Sally939]

Chistine and Mimima,

I feel bad that ypu are both having such a hard time. I hope and pray good times are near for you all.

Chistine,

Remember that just having all those people over is stressful and that can cause pain. I do believe that you will find options to treat your IC and help with your pain. I know your IC battle has been long and hard. Try to keep fighting. I know you tried the diet before but maybe when your meds are right try it again. I hate it but it helps me a lot. By it self it would not help me and the meds only help me if I follow the diet. Just an idea, I know not everyone is helped my the diet. I hope you feel better soon.

I can tell you my bladder is flaring too. I bet the majority of IC patients can say they are flaring today. I cheated and had mascacholi. It has tomatos, bacon, onion and more. I only had a very small amount and we only have it on Christmas.

[GriffsMommy]

Thanks for the support everyone.

Mimi if you have questions about the PN blocks PM me, I'm going for my 4th or 5th one on Friday.

[Bessie]

I am sorry that you are in so much pain. Sending prayers your way and a big hug too :pray::pray::pray::grouphug:

[kadi]

Hi Christine,
I had a Xmas flare too. I didn't eat anything iffy (I'm a total fanatic about the diet & my dad who's an IC-expert-cook made meals special for me & my mom who also has IC), so it was likely stress, extra driving, maybe the workout I did a little too hard to get rid of the stress.

Don't give up hope on new treatments, okay? I've found that my IC-flare days have not gone away completely, but they have become fewer and farther between, if that makes sense. And a flare now is not as bad as it used to be.

Be kind & gentle with yourself. I have no idea how you "moms" on these boards do it all, especially at the holidays! I have enough struggle with just me, 1 :cat: & a small apartment to take care of!

Sending a hug & hoping tomorrow is a better day,
Kadi

[leelee88]

Christine,
I hate that you are having so much pain.. I can feel in your post the agony you are going through.. I wish I could do something to help..:pray:

[ICNDonna]

Hang in there. You will have better days.

Sending warm well wishes,
Donna

[kuntrygurl78]

My family was at my house all day Saturday. I was in pain all day so I was downing the Tylenol and uristat. Finally gave in and took a Pyridium. Im lucky that I dont have the same type of pain you guys have..but its still bad enuf. I whispered to my sis that I was in really bad pain and she seemed surprised. Guess I was hiding it well.

Jerry knew I wasnt feeling well, so he took care of almost all the cooking. Thank god hes a chef:woohoo:

I just had to walk around and chit chat all day and make sure everyone had the soda that they wanted, while I walked around with my water bottle.

I hope you feel better soon! Been thinkin bout ya lots even thou I havent been on the boards much lately.:kissing:

[dreamy]

Hey I just wanted to say I hope you feel better. I can relate. I also had a terrible time feeling well. I basically did as much as I could then laid down and rested. Hope you start noticing better results of the new treatment.

[lisabar36]

Hi Christine! I know how busy you have been and how much you been working to make everyone Christmas PERFECT and you did that, I wanted to cry when I read your post! You know I am here for you 24-7. The lupron can be causing extra symptoms to because it causes your Estrogen to be so high the first few weeks, the hormone replacement just makes them less intense but doesn't take it all away and that could be adding to your pain! I know you haven't felt well for quite some time now and I pray you will start to feel better soon and talk to Dr E. I hope you get some rest and mimimama had a good point, it may be time to take something a little stronger for those days when the other pain med just don't work! I am always here for you!

[humpieumpumkin]

Hang in there! You are so strong, think of all the things you have already over come! I hope 2008 is a great year for you!

Erika:hi:

[verdicries]

christine,
first i am sending you a big hug (well, 2. one from me and one from connor). i know how rough it's been, and you have been very strong. i too have lost a lot of hope so i know just how it feels. holidays are tough on EVERYONE, but when you have an insane illness like ic AND you've been doing the lupron...watch out! you HAVE made progress tho, so don't lose sight of that. you are sleeping better due to atarax, and the nerve blocks help for bits @a time. i know, it's not enough!! but keep going with your treatments...i know the instills help some too.

you have a wonderful family to help you...shane seems like the perfect hubby (my hubby is trying to put together the computer we got for xmas...2 days going @it...it's not going well lmao. i'm using his work laptop ;)). you have a great doc. maybe voice your fears to the doc. sometimes just getting it out to him will help alleviate it. good luck @pt today and CALL ME ... esp. now that hubby's home and i'm not always watching connor dude (that's what we call him lol). i'm always here. i will call u this aft/eve actually...:).

big hugs and lots of love,
tracy

[GriffsMommy]

Aww, thanks Lisa, Tracy and everyone else. You guys are all so great!

Tracy, why is it taking him two days to put together a computer? Shouldn't he just have to hook up some cables? lol I have PT at 5:30 but other than that I don't imagine I'm going anywhere today so I'll be home.

On a more upbeat note, I got a call about my short term disability claim. My silly dr's office put down my last day of work as 12/6/06! They confirmed the correct last day of work with HR and though the woman would not say how long it will take because each claim is different she did say if she talks to her supervisor today it might get approved today!! I will have such a weight lifted off of me when I know the disability checks are starting to come. I feel better today since I let myself sleep in and the kids watched Griff and I have my appointment with my wonder dr Dr. E tomorrow.

[dverba]

I think we all need a holiday from the holidays!!!! I really hope you feel better soon! I know alot of us are in a flare and it is even harder at this time of year. I wish I did not have to work. I would sit in a hot tub and go to bed. Just keep telling your self this will pass. Yah, right, well it will get some better.

[hdb1982]

I hope this all works out for you. You need and deserve some pain free days, as all of us do. Be patient. You have been in pain so long it will not go awy over night, I wish it would.

[GriffsMommy]

Well I'm feeling wonderful right now because they just called and said my short term disability was just approved and the first check is being written today!!! I want to dance around the house singing but since I'm trying to get Griffin down for a nap I guess I'll just have to settle for this type of dance. :dance: :dance: :dance: :woohoo:

[hdb1982]

That's great Christine. I bet you feel like the weight of the world has been lifted off your shoulders. Hooray for you!!!

[SandyRN]

I'm sorry you're having such a hard time! Congratulations on the STD though!! I know that will take some of the stress off of you and that in itself might help the pain.

Take care of yourself and give yourself permission to sleep in more often. Sleep is good for you and it's healing! Have the kiddos watch the little one tomorrow and you might start feeling a little better.

Hugs, Sandy

[SandyRN]

LOL...just re-read my post and I congratulated you on the "STD"...you know I mean your disability! NOT a disease!! :lmao:

[GriffsMommy]

haha, I knew what you meant Sandy. I did that with a post a couple of weeks ago and everyone was so worried that I had a STD instead of short term disability, hahahaha :biglaugh: