Can relate to Jeanniebug on never ending flare

[MakinIT]

I've been diagnosed, officially, with this stupid illness for 14 months. I don't think I've done anything but get worse (as far as pain goes)....I also spent 6 months prior to dx'd going through the tests....So I am in constant pain. When I first got on the board, I felt pretty positive...now I just have just tossed my hands in the air and said "this is now my life" :mad: I saw my uro yesterday, she is wonderful...I love that I have a female uro who is very well trained in IC and has bent over backward to help me. She is going to teach me to cath myself so I can do nighly Marcane (numbing) treatments so I can sleep...at least until I pee the first time. The way it works for me, I take my nighttime meds, I get sleepy and about 2 hours after I fall asleep I get awoken by a knife in my bladder, being twisted...(that's prob. when I'd do the treatment.) Right now, I have to take 10mgs of valium. Otherwise I spend the night pacing the house. My days are almost as fun...I live in a fog, walking through molassas....the pain is so bad I'm on Morphine, Zonegran, and atarax. For breakthrough, I take Percocet 10/650. So, the other thing the uro is having me do is a weekly installation of marcane, kenalog, and heparin for like two months. (I have major allergies so I'm not even going to go near DMSO, I have a realllllly bad feeling about it.) I have great docs, and very sympathetic general practioner who trust me and knows I won't abuse any meds I'm on....I'm very careful. (The percocet script he gave me was at the beginning of Sept...I complained at that appt that I was having to take more break through meds and that's when he realized I've I'm the same dose of morphine for 14 months.

Anyway, with all this going on, I have to go to Canada next week. My first car trip longer than an hour....We are traveling at night to my sister in law's house Ten hours from here. The Uro told me to take 10 mgs of valium every 5 hours or so on my trip so I'd be asleep and bladder would be quiet. I also ordered (and got today) those porta potty things you can get from the IC Website. I had to pull out one and stare at it for awhile to figure out how it worked!!.I'm sure my husband will be thrilled to be sitting in the car next to me (new car, nonetheless) while I pee. He's gonna be freaking out about peeing on the seat so I suppose I better bring some towels to put under and over me. :biglaugh:

Anyway...I've just about eliminated everything from my diet...lost a lot of wieght...especially in the past month because the pain has been really searing.

Thanks for listening all.....I actually meant to discuss this reallllly nasty fight I had with my dad..but found this section...I'lll discuss my fight down lower...I think in depression....(hmmm...I've been there alot lately, I guess this a normal course of events when you have long acting but non lethal disease. My uro says mine is serious, not so much due to the condition of my bladder but because my pelvic nerves are in such horrible shape. (Which is why nerve blocks like those stim things in your spine don't work for me, we've tried)

"sigh"

Oh what fun...

[work it]

Oh hon i am sorry for all the pain you are in. I wish you the best of luck on your long car ride and hope the porta potty works and your hubby will be fine with it.

Good luck and hopefully you will be able to enjoy your time in canada. Drive safe!

[MakinIT]

I know the "drive safe" is just a term...but tain't no way I'm driving. (My doctor took my license when I feel asleep while talking to him during an appointment...3 times....It was a very slurry day, my husband had driven me that day.) I now take the "special buses" that give you door to door service. The driver's are very sweet, at first I was a bit offended that they "helped" me with my seatbelt. Now, there are days I can't figure out how it works....thats been since the pain doc put me Zonegran....makes you kinda stupid but not as bad as Topamax.

T

[jeanniebug]

I'm sorry to hear you're in so much pain. I'm with you, I've gone over and over my diet, gone down to rice and..RICE..trying to figure out why I've been flaring so long. I keep my diet really strict. I had some relief a few months ago, when I first started Elavil..then I started flaring again and it got really bad and never stopped. We've tried upping the Elavil dose w/no luck..still on Elmiron..tried DMSO..just had hydrodistention. Now I'm on daily pain meds and my uro is about to start me on Valium as well for nights. I know that pain you're talking about, when you fall asleep and wake up an hour later with knives in your bladder. :cussing: I too was diagnosed 14 months ago! I guess I'm just trying to say I understand how hard it is. Are you on disability? Just curious. I applied 2 months ago. I'm a zombie all the time. But you know what...I keep thinking, for those of us who have not found our niche yet with meds and diet..someday..something BIG is going to happen and our lightbulbs will go on, and we'll feel better! So you hang in there! :grouphug:

[MakinIT]

Hi Jeannie

YUP on disability....Been there two years in April. I'm on my Employers long term disability coverage which every so often likes to throw a curve ball at me and tell "I'm cured" and therefore "no longer need our service" ...HUH? I always call and ask where they got that info and they tell me I've just been on disability long enough for my dx. So, we play the game of updating my medical records and they pay me for a while again. Meanwhile, they are demanding I get SS. So, I've been denied twice even though, as they said the second time "we understand your condition is very painful and requires medication, we feel you can earn substantial gainful employment (760ish a month) So my lawyer has me seeing the Adminstrative law judge in the next few months. So, I continue taking my Morphine twice a day, valium and other fun stuff..living the life....I used to be a pretty darn good teacher. Spent thousands getting my bachelors, then my Master's...why would I want to do this? (and how the hell do live on 760 and month)

Thanks..T

[jeanniebug]

Oh girl, I should not even get started on my opinion of the disability merry go round. :cussing: I just applied and haven't been denied yet. Not trying to be negative, just prepared to be denied the first time around. My doc is behind me 100%, I tried real hard on the paperwork, all that stuff. I know they are just doing their job, but I know if the person who denies it felt our pain for one day and had to live with it for a year or whatever..they would stamp "APPROVED" across every IC application from then on! I had a great career as a corporate travel agent and made good money..it broke my heart to leave work. You're right..why would anyone WANT to do this? And who could have housing, medication, and utilities on $760.00 a month? Maybe a hobbitt..tiny house, tiny stomach, tiny income. :biglaugh: We are on one income right now (dh's) and it's a real drag. I hope you have some luck with the Administrative law judge. (Is it social security that's denied you twice? Sorry-I'm a little loopey lately)

[alana rose]

I am also in pain 24/7. I normally take demerol 2 pills 4-5/day. When I have extreme flares I take 3 pills-like today! It is ridiculous...I am so mad right now. I can't plan a single thing! I understand where you are coming from! Take care and I wish you well!
alana

[MakinIT]

I won't be negative but my lawyer...(yes, I hired a lawyer, soley because I was too damn tired to do this alone and he obviously knows what's going on, specialized in this and won't take a cut unless we win) use to work for SS. He said they just, as practice, automatically on the first 2 rounds denied 9 of 10 files...they didn't even really bother more than a cursory glance at the file. And yes, my Doc is completely behind me, as well as my psych, my paiin doc, and my uro. All of their reports have stated they have tried everyting, I'm in intractable pain and it isn't going away, and I am on high doses of narcotic medication. The second denial I got actually said based on their review of records from those doctors, I could work. (I've actually read those reports, they say nothing like this "patient could possible do some work" or "she is able to do...." They all say the medication and the pain I experience cause me to sleep and stay down much of my day. SO, I hope you are the one who doesn't get the Deny stamp on the day you are reviewed. I have to wait almost another 6 months to see the judge. I don't know how people who have no income do it. This country has serious problems taking care of those who need help, and I only see it getting worse. (sorry, I'm off my soapbox...I have a tough time staying off it...)


:cussing: Oh yeah,,, I tried real hard on the paperwork...I am actually a very articulate writer, but not lately on the drugs. I'm actually bringing my journals with me to the hearing so the judge can try to decipher my scrawl. It's tough. I can't read it. Sometimes, I can't read my e-mails :biglaugh: they just don't make sense....

Have a good thanksgiving. I'm making the journey to Canada tonight. Yipee.

T

[Babs RN]

Jeanniebug and makinIT,
I know--it just seems like this keeps getting worse. I am at the end of my rope(physically) I also thing I have something else going. Nuff said about me. I'm becoming a post hog. Please feel to call when you need to vent. K?
Hugs and warm healing blessings,
Barb

[MakinIT]

Awww, noboby is a hog. In fact...I go through instances of UPs and 8down12Hmmmm..first time I tried to mess with those controls, wierd. If it looks funny, that's why and I'm just too tired to go back and fix em. ANYWAY....I actually just got a letter from SS (addressed to my lawyer but cc to me) that I need to make sure all my stuff is together and any additional stuff. Soon, I'll recieve my date to see my Administrative Judge. I guess it's time to gather my journals...make sure I have my handicapped parking permit with me (even thought I don't drive) my paratransit pass...etc... :help: Makes me nervous. Think I'll drink a bunch of coffee and water so I have to pee alot...that actually won't be a probem...I usually have to pee alot when I'm nervous. Oh well...we shall see. When I was approved by the paratransit folks, they made me come over to assess me, because they questioned my need. However, as soon as I got of the bus, I was so unsteady coming down the stairs, the assessor had to put his hands out to catch me. Therefore, he decided he didn't even need to walk to with me, as he usually does {what do you do with a drunken sailor, what do you do....** so, between the meds and the pain keeping me pretty tied up and walking very carefully it was obvious I couldn't hang out on a reg. bus stop. He walked me in to the center, we discussed my situation, and I fell asleep during the interview. How fun. Thus, I got the pass for a variety of reasons. the drivers chuckle because in Portland, I first got a rejection of their paratransit. Then, I appealed, citing the pain and the fact that would fall asleep..yaddah, yaddah, yaddah...the worst is, our Max train and Tri met in Portland tends to be always packed and I don't look disabled so I'd have a tough time convincing someone to give me a disable seat. Plus...those seats aren't padded. So, the drivers on the Vancouver buses know me and my coordination well enough now that they try to picture me riding a bus or train standing up...or waiting outside in the rain for a bus. (The Portland system Finally gave me a pass.) I need it because all my docs are in Portland.

Oh well...Happy Thanksgiving..Take care.

[anxious one]

Wow, I can relate to all of that, the "never ending flare" and "disability merry go round" :rolleyes: Exactly right- who the heck would want to give up a paying job and live on a pitiful disability wage BY CHOICE??!! :rolleyes: But yes, I am awaiting my first rejection too- I have an appointment with the "work capability assessor" on Friday. You feel like saying "AS if I could freakin work!!!! :cussing: YOU live my life for a while and see if you could hold down a job!!"

As for flaring, I am also in constant pain 24/7. I thought it was getting a little better lately (I was diagnosed 3 months ago and started following the IC diet then) but WHAM I am in a major, major flare up. I actually went to the ER this morning because I couldn't take it any more. I am on elavil 25mg and the ER dr gave me a script for some "morphine derived" pain killer as I told him flately that paracetamol and iboprufen don't cut it. We'll see if that works.

Anyway, I am so tired from today and drowsy from morphine and lack of sleep... I too get woken about 2 hours in by sharp knifing bladder pain. This morning it felt like somebody was raping my bladder with glass and wouldn't stop.

I hate this stupid illness, the only thing good to come of it is meeting lovely people like you guys. :)

Hugs

Sara

[MakinIT]

Well..I survived the holidays in Chase BC. The trip there wasn't too awful. My Doc had the advice of 10mgs of valium every 4-5 hours, lots of pillows. We traveled all night. (The thing to do when you have chillen's) We had to stop every hour and a half to pee, the kids slept. Husband was patient. Border crossing was easy. Trip to Chase (Poo Dunck town east of Kamploops, Please don't be offended if you are from there :ignore: ) So...10 hours later, there we were...got into bed, slept for a while...Then wound up fighting within a day with my sister in law. I'm a very easy going laid back person and it takes alot to really get my hair standing on end (Look at the trial I've been undergoing for the past 18 months) She has no tolerance for forgetfulness, clumsiness, messiness......and believes that everyone except her own darling child should be shot for allowing any disrespect or forgetful on their child's part. (Her son is now in grade 2 and she still chops his hotdogs in slices and quarters and cuts his grapes in half for fear of choking. I made the mistake of jokingly saying he was going to be the only kid at the senior prom with his mother along to cut his steak. Anyway, Roger tried to explain to her ahead of time that my meds made me very forgetful and tired and, yes, sin of all sins, clumsy. (I usually pass on these trips because of the tension his sis causes) By day two she was all over me for neeeding to sleep and not eating, (wierd eating habits...having to have special food which I brought with me) . By the last day, She made some rude comment about how I was being unfair to her son and my daughter by telling my daughter to listen to me and quiet, follow my directions or she would be going to bed. SO....She says in front of every one that I was really being unfair. You should have seen the smirk on my daughters face. I was furious. I slammed downstairs. All my husband had to say to me was "it wasn't a big deal". :bonk: Anyway, the trip home was not as easy, I could not pee in the travel johns. My bladder has taken a turn for the worse, in terms of let down reflex and I had to go so bad my eyeballs were floating....yet, I couldn't pee. Didnt help that the kids were argueing all the way home. Then, I lost my wallet. So, Had to come home and deal with that BS. (Oh well, my new license photo is much better because I've lost like 70 pounds)

I am just hoping and praying that the catheter procedure will work. Everynight marcane (so maybe I can sleep) and once a week the marcane, Kenalog, and heparin. I have to learn how to do this next week. I guess my urethra is a pain in the ass (uh, literally, kind of) because it has a dimple at the opening. nurses always aim for the dimple, then figure out they hit a dead end. Then they go correctly. I think this is part of the reason I hate catheter procedures, and that I'm sore and swollen. I just hope I dont do that. She told me I could have hubby do it, but that would be over his dead body. :rolleyes: I guess I wouldn't be real thrilled about putting a tube in his penis but at least I could see the hole. ;)

I'm tired. My belly hurts...It woke me up...as usual. I want to just go to sleep and stay asleep for 8 hours. CAN you IMAGINE? I got ticked at husband today and threw a tantrum in my bedroom, in front of him, like a little kid. (Full body throw onto the bed, kicking and yelling, screaming) He just looked at me and said, "I don't know what to say to you". I think I feel powerless and that was just an expression. My kids are nasty to me, my husband is distant, been cut off from my friends, and.....I'm spending most of my time sleeping, taking public "special buses", trying to navigate paperwork. I HATE THIS. Ahem. I'm done. Good night. Thanks for listening.

[alana rose]

If I knew that you were having such an unpleasant time in Chase, you could have called/visited me. I live in Kamloops! And I too, am in a HUGE flare-up since last week-more than my usual 24/7 pain! Today, I got my period-cramps from that and burning from IC. :woohoo: :woohoo: :woohoo: Please do call next time you pass through town! You probably passed by the Starbucks that I manage too! As I have said before, that Starbucks have been so good to me and my illness. When I need a sick day, not a problem. Talked to my regional office and told them about the possibility of surgery (bladder removal) and they told me not to worry about my job that I need to look after myself first. Our philosophy is "take care of your people and the business will follow."

Sorry, going down a another path there! I hope that you are feeling better-the pain is so hard for us to handle mentally. I have found myself saying 'God, I can't take this anymore. Please help me.' I am also thinking of seeking counselling for anger management-not that I show my anger alot, but I am so angry at this disease that so many of us have to deal with!

[MakinIT]

Oh, Hey maybe you made me my latte on the way home Friday (November 26th). I was DYING for a Starbucks. I don't drink coffee often but the Latte to me is like a stiff drink to many people...we stopped in there at about 9:30 or 10:00 ish. I'm the one who lost her wallet.(My sister in law called for me, because all I could think was that it fell out of my purse in the parking lot there, because I found my brush) Twas a bad day.I got back into the states fine. Guess I don't look like a terrorist..but we go through at Abbotsford so it is much more low key. We've only had a couple of grumbly incidents.. The only good thing about that (losing my wallet) was I had to get a new driver's license and I've lost like 80 pounds so my pic looks much better. How have you found services to be for you in Canada, Especially Kamloops...I know specialized care requires a trip to Vancouver, BC. No fun in the winter driving over the Coquihala.

I'm off to have a massage tomorrow, then see my chiropractor in the same building. He often does massage on me first, but told me last time he thought if I saw the therapist in the building first for an hour to really loosen me, he could really do some good work. He gets frustrated with me because I'm in so much pain I twist and tighten and then he has to straighten me out and my pelvis is ALWAYS way off. He has started actually adjusting my pelvis which really helps...allows for swollen and irritated tissue to have more room to move (his theory, but it makes sense.) First, he beats the heck out of my sacral area (the joint in the sacral iliac area...that can often take a while but when it pops it is like this major relief) then, he adjusts my tailbone. I always tell him to be careful because that's awfully darn close to places I really don't fingers to be...(We have a close relationship, we've been working together for 4 years)..he tells me to yip if he gets personal. I tell him he'll get a kick to the back of his head. Then, he tells me somehow I manage to get one bone in my pelvic floor area under, rather than over where it is supposed to be..so he literally shoves his hand and thumb into my butt bones (the thumb is a little lower...almost low enough to get a kick) and he pops that too and that amaziningly feels better. He tries to explain on his skeleton he has in his office what he did but I am simply enjoying the reduction of pain. Then he has to crack allthe ribs in my back (I throw those babies out) usually by exhaling all my air and he pushes against my ribs and it all goes KEEEERAAAACKKKKKK....and I lay there like a noodle. Then he does my neck, (I have migraines) which I don't dig and I finally get the scalp, face massage and cranial sacral work. SO....I should be a noodle tomorow, eh?

Anyway...goodluck up there in the great North, Eh? Hey...Your jr. hockey team plays ours all the time (the Portland WinterHawks) I used to go to the games all the time but I hurt to bad now to sit through 3 periods. You are the Kamploops Blazers, correct?

Night, night.