How do you all cope?

[armslee]

I had another recheck yesterday with my doctor. It is now agreed between him, Dr. Doggweiler and my PT that my IC symptoms are improving with meds but my PFD is getting more severe.

I have maxed out most the treatment options with physical therapy. My muscles are getting worse due to anxiety and stress. My doctors have set me up to see a psychologist on Monday afternoon which after my breakdown yesterday, I must say that I am looking forward to. They are currently sending over my records to the pain clinic to get me an appt but the nurse tells me yesterday at my appt that the last person they referred over had to wait 3 months to get in.

3 MONTHS!!!!!! I about lost my mind! :cussing: That was pretty much when I just went to pieces at the check out desk. I feel like I am at such a dead end street. With every bit of progress I seem to make, something flares up elsewhere to set me back even more. I just don't know how much more of this I can take.

So after I was able to calm down in the parking garage, I just drove home. All I wanted to do was just go and lay in my bed alone and cry until no more tears could come out. Instead I folded some laundry, changed clothes and went to pick up my beautiful daughter. My husband came home and asked me how my appt went and I just told him I didn't want to talk about it. Well of course he didn't understand and thinking that something was bad he questioned me about what happened and I told him that things were fine I just didn't feel like talking about it. He and I didn't talk much last night. I felt so withdrawn, much as I do right now. I hate this feeling!!!! I know it isn't healthy but I have so much anger right now. I need help and these stupid pain clinics just put you off and put you off. I have meds to get me by that isn't the problem. My main problem is that I only have one more week of reduced hours at work before I have to come back full time. I really wanted to be able to be on new pain meds before that time came so that I could be adjusted and be able to function, just to get through the day. I don't want to go back to the way things were. I don't think that I can.

I am sorry this was so long. I guess I just needed to get it out. Thanks to all for listening. You guys are the best. :)

[ICNDonna]

:grouphug: Please talk with your husband. He cares very much about you and I know that when I'm the most upset, it helps me so much when he just holds me and lets me cry.

And I'm glad you will be seeing a professional counselor very soon. Hopefully he/she will be able to help.

I honestly think there is a real need for more pain treatment centers --- most of them have a long waiting time to just get that first appointment. Usually once you get past the first appointment, it doesn't take as long to be seen.

Sending gentle hugs,
Donna

[Trishann]

That definitely would be my first response, wanting to dig a hole and hide, and talking to no one.

But when I talk to my husband about it, I feel better. I wonder why I hestited in the first place.

Hope you have a better day today.

[creatingkarma]

Hopefully this psychiatrist will work with you to get your stress & anxiety levels down & hopefully that will reduce your PFD symptoms. Sorry to hear that you have to wait so long for the pain clinic! That bites, but at least you got the referral! It took me 3 years of complaining about the pain for my uro to refer me to a pain clinic. I hope this all works out for you & I hope that this time goes by quickly for you! I know that you are nervous about going back to work full time. I would be too! I wish that I could help you, but all I can do is pray for you & that, I will do.

[armslee]

Thanks so much for everyone's replies. Donna, you are right, I should talk to my husband about this. I find it really hard to talk to him sometimes because of his physical responses while we talk. I don't know why he cannot just shut up and listen to me sometimes. I guess it is just being "a man" but it gets on my nerves. I listen to him b*tch about his job every night. But everytime I try to speak about something, it is if he doesn't ever listen to me. Right now, I can't deal with that too. He is also drinking more too. I know that is because he is stressed out at his job, worried about trying to pay the bills each month and worried about me.
Everything really just seems like a mess right now.

[Sarojini]

I know it's stressful to have to wait for the pain clinic -- I know I had to wait. It was not quite as long as your wait, but it sure felt that way. When you are in pain, it seems to rule everything, and you just want it OVER WITH. Don't forget, too, that the pain you are experiencing down there has a visceral component, meaning the pathways the pain signals use to get to your brain pass right through emotional centers in your brain -- so responses to the pain cause anger, sadness, etc, and that is NORMAL.

It helps to talk, even when you don't want to. You took the step by posting here; now, talk with your husband. Even if all you do is say how frustrated you are, and cry, it WILL help.

I know I do that because it helps to get it out to someone who loves you. And, Hubby does try to do something about it most of the time because, while he has trouble with how emotionally charged I am at times (he's a holder-in and I'm a crier/screamer/etc when it comes to emotion), he DOES understand my pain and frustration.

He has done things like call doctors and do the yelling that I can't sometimes. He has gotten my medications changed when I couldn't, and one of the reasons I didn't have to wait quite as long for the pain clinic was that HE called and did what the doctors wouldn't or couldn't -- he got me in sooner ;)

I am also glad you are seeing a psychologist soon -- that helps. I went, and still do. It helps. Not only do you have an hour just for YOU, you will learn mental techniques for dealing with pain and life in general.

:grouphug:

[armslee]

Thanks Jen. That is one of the things that Dr. Doggweiler said.... to gain techniques and ways to deal with the pain.
I hope it really doesn't take three months. My doctor didn't think it would, although, he isn't the one that has to call and make the appointments. I asked my nurse yesterday if it would help if he called and she said "no, it didn't when he tried calling for the other girl".

When they do call me with the appt date, I think that I will call the pain clinic and ask them to contact me if they have any cancellations. Also the psychologist I will be seeing deals with this pain clinic, so when I see her on Monday, I am going to ask her to contact them as well and possibly speed up the process.

Everyone keep your fingers crossed for me and thanks so much for the sweet and thoughtful words of encouragement.

I hate this disease. I hate the pain and the way that it toys with your emotions and controls your life.

[Trishann]

Armslee, I'm sorry it is hard to talk to your husband. I am glad you can express how you feel here. I really hope things will start working together for you and I do hope the best.

Prayers, Trishann

[green_the_fish]

Have you considered vaginal valium suppositories for your PFD? I was diagnosed with mild PFD and improved through PF therapy, but it seems like you may need more than that to get significant relief. It's worth a try, at least.

Hugs :grouphug:

[armslee]

Hi Green-
Yes, Dr. Doggweiler mention the valium suppositories to me. However she said that they are pricey so I should see how the flexoril works out first since it comes in generic form.

After I came home from work yesterday, I layed on my couch and ate half a sleeve of Chips ahoy cookies. Wow, they were good! I guess chocolate is a mood enhancer, haha :lmao:

I am really looking forward to my appt with the psychologist Monday afternoon. Funny, I was dreading it several days ago, but the more I have gotten to think about it, the better I think this will help me. I have had some slight depression in the past from cluster headaches and dealing with IC. Then I felt as though my "slight" depression really just turned into an anxiety disorder. But now I think I have the anxiety and a cause of major depression happening. I guess that can easily happen when dealing with pain and chronic disease.