Close to the End of my Rope

[donutgirl]

I've been crying since the middle of the night. I HATE this disease!!! I want so badly to pull myself together, feel better and return to work. I had my mind made up yesterday that I was gonna try it w/o my pain patch and see if I could stay up more during the day and try to get at least some of my life back. Well, needless to say, that lasted until about 3:30 AM when I couldn't take the pain any more and slapped another patch on. I know my short-term disability runs out in a couple of weeks and then it goes from there to long term IF I'm even approved. I am not responding to the meds for my IC so the uro. wrote me out permanently. I feel like I have no life. I spend more time in bed or on the sofa than anything else. It's all I can do.....Walking to the dang mailbox and back wears me out. I suffer from depression and have since 1994, so I take meds for that. I called a counselor last week to get in my 3 freebies before I lose my job. I'm supposed to meet w/ her again today. I've tried so hard to hold my head up and be optimistic that there will be some glimmer of light at the end of the tunnel. I read posts here where people say there can be life with IC, but for me it's just not happening. I've always been so strong and able to get through anything. The clock is ticking and I'm getting no where fast.

Diane

[ibtracy]

Oh honey, I feel so bad for you! I know what you're going through if that's any help. I've been in constant, severe, chronic pain for the past almost 3 months and ended up loosing my job to IC so you're not alone in your battles. I wish there was something I could say to make you feel better. If your uro has given up on you or at least experimenting with some different forms of pain therapy then you need to search for another one that will help you. I too was on the pain patch but couldn't handle it. I had really bad chest pains, was totally comatose and threw up so they switched me to Oxycontin twice a day with another med for break through pain and this regimine is working quite well. :angel: I'm sending you an angel to watch over you and pray that things might be a little brighter tomorrow. Each day is a new day, remember that and there are many caring people on this board to help you through crappy days like today. If you need to talk more, PM me and I'll give you my email address. Do you have family you can call in for some extra love and attention? I think you need to have someone there with you for a while, being alone only seems to make things worse. Pick up the phone, call a family member or friend and reach out for support. You can make it through this! Keep your chin up - there will be easier days ahead.

Are you sure you don't have an infection? Pain sometimes flares higher with a UTI. Might not hurt to get that checked out, okay? :)

[tigger_gal]

(((((((((((Diane)))))))))
I am so sorry you are having such a rough time... I wis I could fix you and make you better. :smile fai ..... sending off lots of hugs and feel better wishes your way..
hugs
Brat

[vm]

Big gentle hugs to you - and a big smooch. :kissing: I pray something will come along to make life just a little easier for you. :(

[donutgirl]

Thanks to all who responded here and who sent me emails.

Well...I just got back from the doctor's office & pharmacy. I was having w/drawals from the pain patch. How I got into this situation...Mine never would stick very well after about 12 hours. The paperwork says if the patch comes off to replace it w/ a new one. Well, since you can't just go to the pharmacy and get a new replacement patch or get your prescription filled before it is time to do so, we would just tape mine back on and apparantly I was not getting the meds like I should. That started me feeling bad, then when it was time to take that one off and put a new one on, it would stick good for about a day and I would spend the day almost comatose in bed...you could barely wake me up and I definitely wouldn't remember anything you said to me if you did get me awake. As this process progressed, I felt worse and worse. I felt like I was getting the flu, my chest hurt, I had a headache and felt like I couldn't catch my breath. I was feeling so bad a couple of days ago that I stopped the patch cold turkey, thought I was gonna be SuperWoman and try to overcome all this and do it on my own....NOT A GOOD THING TO DO!!! I was in severe drug withdrawals yesterday and today, which of course affected my depression too. Dr. put me back on hydrocodone to get some pain meds back in my system, backed me off of neurontin except one at night to help me sleep, refilled my ativan to calm me down, set me up an appt. for a psychiatrist that deals w/ chronic illnesses and has some patients w/ IC, set me up an appt. w/ a rheumatologist to check on the fibromyalgia and possibility of Lupus (tho no openings until Jan.), and had the lab draw blood for a liver panel. (The depression meds I've been on for 10 yrs. can affect my liver enzymes as can the elmiron.) I'm beginning to calm down and come back to earth. Thank God! I had prayed and screamed and cried asking for God's help. Drug w/drawals are horrible. I really felt I was going to die. The other thing the doctor told me, was when I'm having a meltdown like that to call 1-800-HELP-ICA...there are counselors or someone to talk to me there when no one is around. I wasn't really aware of that...does this site have something like that too??? Now that I'm not quite as bad w/ the withdrawal symptoms, everything else is falling into place. Thanks be to God that my rope didn't break.

DIANE

[tigger_gal]

Hi Diane..
I tied a knot at the end of the rope, so you wouldn't fall ((((((hugs))))).. I sure hope things lighten up on you and you start to feel better......
keep us posted on how you are doing... I also have fibro...
Hugs
Brat

[ICNDonna]

I hope your tomorrow will be a better day.

Sending gentle hugs,
Donna

[Jen_Cole]

Diane-are you wearing the fentanyl patch? I have a friend on here who was using it as well, and she is going to have botox done on Monday. Maybe it's time to try something like that? (If you've already exhausted all your other options.) I think she kinda got to the point where it wasn't working anymore-she may have built up an immunity to it or something.

[dancemomof2]

Maybe if we all tie the ends of our ropes together, we can pull you out of this one. :thumbsup: :grouphug:

[Andrew_J]

I've been crying since the middle of the night. I HATE this disease!!! I want so badly to pull myself together, feel better and return to work. I had my mind made up yesterday that I was gonna try it w/o my pain patch and see if I could stay up more during the day and try to get at least some of my life back. Well, needless to say, that lasted until about 3:30 AM when I couldn't take the pain any more and slapped another patch on. I know my short-term disability runs out in a couple of weeks and then it goes from there to long term IF I'm even approved. I am not responding to the meds for my IC so the uro. wrote me out permanently. I feel like I have no life. I spend more time in bed or on the sofa than anything else. It's all I can do.....Walking to the dang mailbox and back wears me out. I suffer from depression and have since 1994, so I take meds for that. I called a counselor last week to get in my 3 freebies before I lose my job. I'm supposed to meet w/ her again today. I've tried so hard to hold my head up and be optimistic that there will be some glimmer of light at the end of the tunnel. I read posts here where people say there can be life with IC, but for me it's just not happening. I've always been so strong and able to get through anything. The clock is ticking and I'm getting no where fast.

Diane


I can empathize with so much your are going through. I started showing IC symptoms in 1990. It was 1999 before I found a doctor who really believed me--he happens to be a nationally renowned expert in IC, got lucky there.

But for those nine years, I had insurance for only a little time. I missed so much work over the twelve years before I finally could work no more and had to go on SS disability. I graduated H.S. in 1988. By 2001 I had had 24 jobs.

I know how much more fortunate I am than I lot of my fellow IC patients. I have an incredible support system. A wife for whom words can do no justice. A beautiful, brilliant, vivacious nearly five year old girl. I finally have my own house (well, mortgage, :) ).

But the depression sinks me at times so badly I don't want to move, let alone take care of my responsibilities. And I've suffered from depression off and on since 12 or 13 (I just turned 34). I've tried at least a dozen anti-depressants. They were either as effective as M&Ms or, like Prozac (which made me ten times as suicidal as I had been before) had such bad side-effects it couldn't be taken.

I know they work wonders for many people; not me. The light in the tunnel seems so far away, almost as if it were a hallucination, a mirage of happiness "just around the corner" drawing you onward, tho' the light gets no larger, the tunnel grows no shorter.

I leave you with some lyrics from a song from my favorite band, Rush. The song is called The Pass:

Everyone does time in the gutter
Dreamers turn to look at the cars
Everyone does time in the darkness
Dreamers turn to look at the stars

words by Neil Peart
from Presto, 1989

Ten years after he wrote this song, his only child was killed at 19 in a car accident; eight months later, his wife, the girl's mother, died of cancer after twenty years of marriage. He didn't leave his house for two years. But now he's remarried and they've even released two albums and done a tour.

If a man can comeback from that...surely our lights are a little bigger, our tunnels a little smaller than they seem.