Don't need any pain meds tonight! :) Woo Hoo! [Archive] - ICN Support Forum - Interstitial Cystitis, Overactive Bladder, Pelvic Floor Dysfunction

Bozema

07-25-2006, 07:31 AM

Hi Lori and Kristen-

I am at 6 weeks as of yesterday. I've been a little flarey the last couple days, but I know it's due to overdoing things a bit - bike riding, hard physical activity, too much staying up late and going out and too many long days at work. It's going to be a long week. On top of that, we're in the middle of the great California heat wave. It was 111 on Saturday, 109 on Sunday, 105 yesterday and 101 projected for today - so at least the trend is now down. But things are very humid, and in this part of the world, none of us has air conditioning. We sometimes get hot here, but humidity is rare and we tend to cool down at night, so AC is generally not needed. But I do wish I had it right now. I know the weather is contibuting to the IC issues as well. Anyway, I'm not bad considereing, which I attribute to cyclosporine and I'm doing my best to take it all in stride. By tomorrow, we are supposed to be back in the 90's and the temp is supposed keep going down this week, and after Thursday, my work schedule should settle down too. Hopefully in a few weeks, the cyclosporine will really kick in - it took me to about 10 weeks last time before I really started to get the full effect. So, I'm remaining hopeful.

I hoping both you are having a good (and cool!) day.

-Laurie

Tracey5399

07-25-2006, 07:34 AM

Lori,

I am soooooooooo happy for you!!!
You keep it up, may you never need another pain pill again.

Hugs,
Tracey :)

ICLori

07-25-2006, 08:06 AM

Hi, Laurie, I'm sorry you are flaring a bit. It does sound like you aren't flaring as badly as you would be without the CyA, though, at least. That's good.

I'm sorry about the heat - it's miserable all around the country, maybe it's global warming, shrug - hopefully it will break soon and you'll be comfortable the rest of the summer. Jill had a good thread on heat survival tips. Maybe a window air conditioner unit, just for your bedroom, wouldn't be a bad investment - I think there are some reasonably priced ones these days. Although they might be sold out, considering the weather lately...might be worth it still, for next summer...

Blessings, Lori

ICLori

07-25-2006, 08:07 AM

Hi, Tracey, thank you so much! That's what I'm really hoping for so much!

Blessings,
Lori

Bozema

07-25-2006, 08:45 AM

Hi Lori-

Thanks for the good thoughts. Unfortunately, it's tough to do a window unit AC when your bedroom window also happens to be a door! Besides, thankfully we are supposed to start cooling down this week. We'll just muddle through the next couple days and we should be fine. Fortunately, we don't get many days where it doesn't cool down in the evening.

Now a window AC at work might be nice....not likely though.

-Laurie

ICLori

07-25-2006, 11:37 AM

Argh....well, I'll just keep my fingers crossed that the heat wave will break soon for you.

Hmmm...putting on my thinking cap again....do you have any room (little office, etc.) that does have a window the right size for a window unit? If so, there could be a place where you could throw an aerobed or something and sleep when it's wicked hot...just an idea...I hate to think of you suffering. :(

Blessings,
Lori

IcyAngel23

07-25-2006, 02:21 PM

Laurie-

I've noticed I feel like crap when it's really humid and hot here. My air keeps having problems so I have AC here and there. When it works I feel really good but when it's hot I'm so exhausted and feel icky.
I'm doing pretty well. I finally went to get my kidney,live and cya levels checked. I put it off for too long. I'm doing good and I hope everyone else is too. Take care.

Kristin

ICLori

07-28-2006, 02:50 AM

Still doing really well, I've cut my Minocycline down to twice a day (from three times a day) and still doing fine. Still need a little help at night, but feel that I'm slowly getting better and better. I think in another month or two I might even achieve remission.

And today was really cool because I got my Happy Birthday message from the ICN! :) That was nice. I'm 45 today. I feel like I'm more like 85 sometimes, LOL. This CyA is really making me a lot more tired than usual, still, I can tell. Wonder if I'll ever feel back to normal?

Blessings,
Lori

blondie45

07-28-2006, 03:12 AM

Happy Birthday Lori. Good to see you are doing well. You are about 1-1/2 months younger than me. I also feel like I am 85 on most days.

ICLori

07-28-2006, 05:46 AM

Thank you! :) Yeah, I think this disease (or the meds we take for it) can make us feel old and tired...sigh...

Got the in-laws coming up from Florida so will be out of the net until the end of next week :( I always find entertaining a bit stressful. Fun, but stressful. Hopefully I will make it through, LOL!

Blessings,
Lori

louise

07-28-2006, 08:58 AM

I Have To Go To My Grand-daughter's First Birthday Party Tomorrow (sat.) And I Am Not Looking Forward To It (even Though I Should). We Have Been Having A Heat Wave Here Too And It Has Made My Bladder Go Absolutely "wonky"!!! The Pain At Times Has Been Unbearable. I Save The B & O Suppositories For My "emergency" Pain But They Aren't Working Either. I Have A 90 Minute Round Trip Drive To The Party And Then The Two-hour Plus Party But Hubby And I Are Planning To Skip Out A Little Early. With The Pain I Am In Now And After The Drive There I Know That I Will Be Feeling Worse By The Time We Get Home Tomorrow Afternoon. We Are Supposed To Go Out For Dinner Later, But I Think I May Be Taking A Pass On That.
I Find With This Ic And Especially This Terrible Flare With The Heat That I Can't Push Myself Or My Bladder Pushes Right Back With More Pain. It Is As If It Is Telling Me To Behave And Rest More Or I Will Make You Suffer Much Worse. At Least That Is My Theory And It Sure Proves To Be True.

I Am Looking Forward To The End Of August When Hopefully I Will Be On The Cya. I Have To Do A Pamidronate Infusion First For My Osteoporosis As I Can't Take Drugs Like Fosamax Because They Irritate My Esophagus. I Have To Go Every Three Months For The Injections But Hopefully In Time They Will Improve My Bone Mass.
I Was Diagnosed With Osteoporosis At The Age Of 34 Due To Family History And Having An Early Hysterectomy At 30 And Going Into A Surgical Menopause. I Have Already Had Two Compression Fractures In The Middle Of My Back And The Doctor Hopes The Pamidronate Will Help.

I Hope Everyone Has A Better And More Painfree Weekend!!

Louise

Bozema

07-28-2006, 10:42 AM

Hello Cyclo Gals-

Lori - Happy Birthday!!!! Wishing you a wonderful and pain-free day.

Louise - sorry to hear you are having a rough go of it at the moment. Hang in there. At some point the heat must pass. I actually have a rougher time in cold weather, though I must admit the heat has been pretty bad for us recently here in California.

As for me, I've been sort of flarey all week. Not really bad, but not great either. By the end of the work day, I'm pretty uncomfortable. I'm hoping I can relax this weekend and maybe get things mellowed back out.

I hope everyone has a wonderful weekend-

-Laurie

IcyAngel23

07-28-2006, 03:11 PM

Lori Happy Birthday!!!!!
Louise Sorry you're going thru a hard time now. I hope better days are coming soon.
Today I feel good. Really antsy.
Hope everyone has a wonderful weekend.

Kristin

ICLori

08-05-2006, 05:05 AM

Thanks, Kristen.

I'm having nausea again and a lot of tiredness (to the point where I want to lie down most of the day, and am giving in to that urge.) I'm still having pain at night and I don't feel like I'm really much better than before....I am wondering if this CyA is going to work for me or not.

It's only been six weeks since I've been on the regular dose, though, so maybe I just have to wait awhile more...I'll give it at least six months....

Hope everyone else is doing better than I am.

Blessings,
Lori
P.S. Any improvement I do have seems related more to the antibiotic Minocycline than anything else at this point - each time I try to drop my dose of that, I end up with a big flare....yuck.

Bozema

08-05-2006, 08:41 AM

Lori-

Don't get discouraged just yet. I am nearly at week 8 on cyclo and still having flares. I think it's way too soon to jump to conclusions. I took this week off from work to see if I could get things to settle down long enough for the drug to work and to quit driving and sitting at a desk for a little bit and flaming things up each day.

That said, it may be worth talking to your doctor about the antibiotic use. Perhaps you have a bladder infection (or even some other type of infection) going that needs to be checked out. Perhaps minocycline is supressing it a bit but not actually nuking it.

As for the nausea, I am finding a pattern to it. High protein and fatty foods seem to make it worse and alcohol is also not so good either. Eating too much also seems be a problem so I am eating smaller, more frequent meals. I'm being a bit gentle with my system in terms of what and how much I eat and that seems to be helping avoid that particular side effect. Keep in mind too that antibiotics can make you nauseous and perhaps the combination of minocycline and cyclosporine is just rough on your system.

Basically I guess it's about treating yourself kindly while taking strong meds-

Hang in there and hoping you feel better this weekend.

-Laurie

ICLori

08-05-2006, 09:57 AM

Hi, Laurie, thanks so much for answering my post! :) I have to admit, I am getting a bit discouraged and wondering if this will work for me or not. I'm six weeks into it now...I know I really won't know until the six month mark. I'll hang in there. It's just that I had hoped so much it would work by now. I guess I'm feeling kind of tired of being sick, and tired of having low-level bladder pain.

I'm afraid to stop the minocycline because every time I do, I get a bladder flareup. I've often wondered if maybe I have Lyme disease or even mycoplasma or something (associated with Gulf War Illness - I was over there during that time...) because I do seem to get better most of the time with antibiotics, then worse off them. But then again, antibiotics have antiinflammatory qualities, and I'm not the only IC'er who has said they are better on antibiotics...I just don't know.

If I do have Lyme or mycoplasma causing this, and not autoimmune disease, then I'm going in the wrong direction I guess....really if this doesn't work at the six month mark, I am going to ask for tests for those two diseases. The worst that can happen is the doctor might say "No, that's ridiculous."

The nausea is pretty low-level, too, not actually throwing up, but just feeling blah enough that I'm spending almost every moment I can lying down rather than active. :( I feel like such a lazy, horrible person. :(

I would try frequent meals (thanks for the tip) but Minocycline should be taken on an empty stomach for best absorption, and I take it 3 times a day so I have to kind of space my meals out around that....I do find that I am gravitating towards things like rice, crackers, potatoes, etc. rather than other foods, so that's the nausea talking I think.

Anyway, feeling a bit down but very glad to hear from you, and I hope so much that you will soon experience a terrific breakthrough and find 100% remission. That would make me so happy if I could come here and read that you guys are feeling much better! :)

Thank you again....

Blessings,
Lori

Bozema

08-05-2006, 11:41 AM

Dear Lori-

Hang in there!!!!

I'm going through all the same things - the extreme tiredness, the low level flares, the low-level nausea, the carb cravings, the whole package. I did this all last time too. I had mac and cheese and an ice cream sandwich for lunch today. Just sounded good. My DH brought me a burger from our favorite burger place last night (not a fast food one - a "real" burger) and I could barely eat half. It didn't even taste good.

Plus, you are taking antibiotics which creates a double whammy of drugs that cause nausea and tiredness.

Right now we just gotta ride with the tide for a little while.

With a little luck, we'll be in remission before too long and can reduce our dose and maybe feel a little more normal.

But for now, we just gotta take care of ourselves. Lots of rest, and healthy food that's easy on our system.

And if we can, not spend too much time worrying about what is to come in the future.

Oh, and antibiotics used to make me feel better too. Those days are gone for me I think.

Anyway, keep your chin up and take good care of yourself-

-Laurie

IcyAngel23

08-05-2006, 04:31 PM

Laurie-
I've been getting the same side effects too. I've never been this tired in my whole life. Even going to the bathroom feels like a big deal. Today was a major flare up. I had to take vicodin that I had from my stiff neck a few weeks ago. So today has been crappy. I went out last night to a family party at a bar so maybe it was too much for me. Plus everyone else was able to drink but I was never a drinker anyway. It just wasn't fun to have everyone else drunk (Big Irish fam) and me sober. I"ve just been so tired I'm rarely on my computer the last week or so. I miss it alot but it is such a hassle. No matter how much I sleep I can never seem to get enough. Well I'm almost at the one month mark so I've been going down hill the last two weeks. It might be related to a virus or something.
Lori-
I'm surprised that you're able to take anit-biotics on CYA. Maybe the one your on isn't on the list of drugs suggested not ot take.

The three of us are going to get through this in time. Keep the faith and hope alive. I think I felt better so quickly is my age plus I'm not working so I'm able to get lots of rest. I can't believe you two are able to work with this drug. You're both stronger than I would be. Maybe if you have vacation time take it and take care of yourself. You'e health is the most important thing.Take care.
Kristin

ICLori

08-06-2006, 10:30 AM

Hi, Kristen, I'm sorry you haven't been feeling well either. (((HUGS))) I had a big meltdown again today and cried a whole bunch. I usually feel better after I have a good cry, at least psychologically I mean. It feels good to just cry it all out sometimes.

I don't work - I don't know how Laurie does it - all I do is a one day a week volunteer job (and sometimes I feel like it's a real struggle to just do that)....I'm always terrified of what will happen to me if my husband decides to dump me and live with someone else instead, someone healthy...

But anyway, minocycline isn't one of the "no-no" antibiotics actually...looked it up and the symptoms I'm having are from the minocycline, I'm pretty sure, so I will stop that because I'm tired of the nausea.

The lethargy and fatigue are incredible, aren't they? It's awful. Feel like I'm dying, honestly. Today I had to unpack some china that was a birthday present to me and I cried because it was so hard to just unwrap them, it took so much out of me to do that one small task.

I'm going to stop the minocycline. I just wonder how much longer I will have to wait before the CyA starts working for my bladder pain - or if it will EVER work for me. I'm starting to have doubts again. :( Getting really down.

Well, I hope so much that you get better soon - I figure, the more time goes by, the closer we all get to that magic 3 month mark or 6 month mark when we start feeling better - if nothing else, at six months, if it doesn't work for me, I can go off it and then I won't have the side effects then....just 4 1/2 more months for me, LOL. That's a long time, isn't it? And what if these side effects never go away?

It sucks not having anyone to talk to, who is on a high dose like this for a long time, to see what the future holds. I hate being a guinea pig. My doctor doesn't know a thing. Kristen, does your doctor know how long the side effects would last? Do they ever go away?

Anyway, sorry for ranting so much. Still feeling so sick, so tired, and wondering if I will ever get any better.

Blessings,
Lori

Betsie

08-06-2006, 11:57 AM

((((Lori)))),

I check in on the CyA threads from time to time. I don't know much about it, other than you have so much hope for this to be the one.

I am sooooooooooo sorry to read how down you are. I really hope that cry helped a bit, but I do understand how hard it is when we don't respond to medical Tx's. Not from IC, but other stuff for me.

I just wanted you to know I feel sad with you for the unanswered questions you face right now. I bet your husband is also one to really understand, I sure hope that is true. I was sad that you wrote that. I bet he is frustrated for you.

I know lots of us here wish you whatever works, so even though today is really hard, I hope that knowing you are being thought of will help even a little bit!

HUGS!!

ICLori

08-06-2006, 12:17 PM

Thank you, Betsie, your post helped me so much. I gain so much strength from the other IC'ers here, because you all pretty much know what I'm going through. This disease is horrible. I wish there were some wonderful cure for all of us.

Thank you so much.

Blessings,
Lori

marsi4

08-06-2006, 02:01 PM

I truly hope that it helps all three of you and anybody else who decides to persuade their doctor to prescribe it for them. I'm going to try botox soon and if it doesn't help I may consider Cych A. Maybe it won't be that difficult convincing my uro because I also have arthritis so maybe my rhumatologist will prescribe it for me along with my uro. I'M really scared of the side effects and long-term effects since I,m already dealing with several inflammatory diseases. I'm so scared of my health deteriorating even further. If I can't manage my pain with my new pain doctors regimen, I'm seriousy going to consider Cych A. Wishing you continued progress with this med and more pain free days.

Marsi 4

Bozema

08-06-2006, 04:05 PM

Hi Everyone-

Lori and Kristen - hang in there. I agree, these side effects are no fun, especially the tiredness. Alcohol does not hold much appeal for me at the moment either Kristen, and I often feel rotten the next day if I drink. That said, a glass of wine will help break a flare for me, so occasionally I'll have one.

How do I keep working? It hasn't been easy, in fact it's been very hard, but I have my reasons. First has been mental health and the fact that I really like my job and get a lot of satisfaction from it. To give it up would be hard for me. I took time off in the winter when my symptoms were bad and I was trying cyclo for the first time and though I had all these side effects then too and had more ability to rest, I found that I felt lost, lonely and depressed. My DH would head off to work and I'd be left to hang out and rest all day but it made me feel lonely and anxious and down. Though working exhausts me, I'm finding my mental health is better this time around and often during the work day I can forget about IC for awhile and just do my job. That said, I'm not as productive as I used to be, I take longer to finish things and I sometimes have a hard time focusing. I've worked at home a few times because of bad flares or sheer exhaustion, but for the most part, I've been getting to work. It helps I have a very understanding female boss. She has been very helpful with my need for alternative schedules and work arrangements and she actually gave me a very good eval noting that I could have taken the easy road and gone on disability and I didn't. I also know she really needs me since I have skills that no one else in the organization has and would be tough to replace by hiring someone new. In return for her loyalty, I've tried hard not to let her down. Also, though my husband has a reasonably good small business, my job is a government job that provides good benefits, especially health insurance, which he cannot provide and I really need right now.

The other reason is my DH, who I came to realize was actually more scared of my diagnosis than I was. I have only been dealing with this for a little under a year. We went through several crises last year including major water damage to our home that necessitated a major and costly remodel, so finanacially we were on uncertain ground. We came through OK, but me returning to work helped reduce some of his anxiety about my ability to recover and our financial situation. So for all those I reasons I go to work.

Which comes to your comment Lori about worrying about your marriage. I understand that feeling and I have had the same worry at times. The last year hasn't been all sunshine and roses for us either, in fact we've been pushed to the limit at times. But he's still here and I'm still here and we still love each other and gradually we are figuring it out. I don't know much about your relationship, but your DH has hung in there for 5 years with you, which is a credit to him and to you. I'm coming to find that worrying about whether my DH will leave is toxic to the realtionship and not helpful. It is far better to talk when you can, find out what he is thinking and do the best you can to help each other along the way. Like I said, I found out my DH was in many ways, more scared than I was. Since that revelation, I have been able to talk to him more freely and take steps to help him cope too.

If later we decide we can go on without me working, we can decide it at a time when we aren't facing multiple catastrophes at the same time. But even if we come to that place, I'll still do something - easier job or volunteer work because I know I am mentally better when I am doing something productive.

So that's it from here. Lori - cry when you need to - it's OK. Try not to get discouraged and try to fight off the depression and keep things in perspective as best you can. Side effects suck, but we are working toward a larger goal. So hang in there..............and lots of ((((hugs)))))

-Laurie

Vicki

08-06-2006, 04:39 PM

Lori- Is there some connection between IC and Lume that I am not aware of? I have seen several posts talking about Lyme disease lately so I'm a little puzzled. Can you shed some light on this?
I have exciting news. There was someone from Memphis that posted about a drug called Xolair. I got in touch with her immunologist and am going to see him in two weeks. He is going to test my immunoglobin E to see if it is out of range. If it is, then possibly the Xolair will work for me! -Vicki

ICLori

08-07-2006, 06:32 AM

Hi, Everyone, thanks so much for posting!

Marsi4, thank you so much for your post, it really comforted me and I'm sure others were glad to see it too. I hope so much that the Botox will work for you - it's worked very well for some ICer's, there's good reason to be hopeful - but if not, there is CyA, and also if you can, see if your doctor will test your immunoglobin E to see if Xolair would help you. I don't know much about it, but it seems like it would be a less toxic drug to try than CyA. But if you end up having to try CyA like the three of us so far on it, I wish you the best of luck and hope that it gives you complete remission. But I hope you won't have to take it because the side effects can be pretty yucky and it still seems like a kind of dangerous drug to me in a way.

Laurie, your post made a lot of sense to me. That's part of why I volunteer, because it really helps my mental health. I probably would be even better off with a job, and I regret in some ways that I quit my job years ago when I did. Well, I've since moved, so I would have had to quit the job anyway, but...it was to where I was peeing 40 plus times a day/night, constantly in pain - I just couldn't do it. And now...even now, I don't feel I have the strength to try to jump back into the job market. It's hard learning a new job, I feel like I would have to be mostly well in order to do that. So I still hope that someday I might work again, but I will probably never have a job again where I earn anything much over $10 an hour. That is just not part of my life anymore. I've been out of the workplace so long...I don't know.

I am actually looking into medical transcription as a career/part-time job thing. My stepmother has signed up for a course and I'm going to see if she ends up getting employment or not - if she gets a job, I might sign up for it.

I'm actually very lucky to have the husband that I do. He believes very strongly that marriage is for life, and has told me countless times, he will take care of me even if I remain sick the rest of my life. He is there for me. So I know my fears are mostly groundless. It's just hard when you're sick. I know everyone here struggles with the fears, with the feelings of being worthless, with the depression that comes from being sick all the time and never knowing if anything will ever get better.

Today, my bladder is feeling okay. Probably because of the Minocycline. But I stopped taking it yesterday. So I am less sick to my stomach today - I had horrible diarrhea all day yesterday and last night. I am slightly better today but still feeling weak. Will stop the Minocycline for awhile now, even if the bladder pain comes back, which I'm sure it will.

Vicki, I wish you the best of luck with Xolair - I am excited for you! Please let us know how it works for you - I think we are all hanging on the edge of our seats on this one!

I hope everyone is having a pain-free day.

Blessings,
Lori
P.S. Vicki, I forgot to add, some IC'ers actually have Lyme disease (which is not detected by urine tests, but must be detected by a blood test) and Lyme disease can cause the same symptoms as IC because the Lyme spirochetes live in the bladder and irritate the heck out of it but don't shed into the urine so no one knows. Anyway, I think (personally) that every IC patient should be given a Lyme test as one more test to rule out other conditions. I guess docs don't ever give Lyme tests, though, unless someone presents with a rash and says, "I was bitten by a tick."

blondie45

08-07-2006, 08:51 AM

If you want any info from me on medical transcription you are more than welcome to private email me and I will let you know some of what I know. I actually did start out my career in medical transcription at one of the online schools.

ICLori

08-07-2006, 11:09 AM

Wow, thank you! :) Hmmm...okay, if you used to do that and don't anymore...is it because you are too sick to do that now, with IC (until I get better, I wouldn't even try to do the school) or because it was such a hassle or low-paying or otherwise not really a great job...? Just wondering...

I'm just trying to think of something that has a little flexibility built in (maybe) so that I can still do it even with IC....I dunno...

Blessings,
Lori

Bozema

08-07-2006, 12:45 PM

Lori-

I don't know much about medical transcription, but some sort of job where you could work flexible hours would be great. I understand how hard it would be for you to learn a new job at this moment - there is no way I'd change jobs right now for anything - it would just take too much effort and be too stressful. That's another reason for not quitting the one I have. It is hard, but I am coping, and finding a new one later might be too daunting. Right now it's better to get through this phase and see where I end up rather than to start something else.

I'm glad you have a supportive and wonderful DH. I guess we're both lucky that way-

-Laurie

blondie45

08-07-2006, 02:02 PM

Sorry about the way I worded my reply. I am still very much doing medical transcription as my job. I meant that I started taking an online course for this and then switched over to my local technical school. I work for a local hospital out of my home and am lucky enough to get to pick my hours per day.

My best advice to anyone wanting to go into this field is to check out the online schools, and if you decide to go that route make sure that they are a school that is accepted by some of the national transcription companies (Medquist, etc) that hire new graduates from these schools right when you are done with their courses. It is possible to get into this field with only your schooling if you pick a school that the nationals know is very good.

If you do lots of research and type medical transcription into Google you should be able to find out things on the national companies like Medquist and some of the schools. Also the MTStars website has message boards with tons of information.

Since most of the national companies do pay per line when you are first out of school you will probably not make very much money for the first year or so, but to me this is so worth being able to work at home.

Any other questions, please feel free to private message me if you would like.

IcyAngel23

08-07-2006, 04:01 PM

Lori-Laurie-
I got denied today for SSI. So I'm kinda down.
I agree that a good cry works. I'm eating vicodin like crazy. The drs office screwed up my refill and didn't call it in last Wednesday. I kept on them about it and they said they were doing it. So needless to say I don't have any CyA and coming off of it sucks. So it'll be two day until I can get it. So it sucks big time. Well I'm glad all of you are supportive and I hope all is well with you.

ICLori

08-08-2006, 03:04 AM

Thank you so much! Yeah, I doubt if I would make much at first, LOL...I took a medical secretary course a few years ago when I was having a semi-remission and feeling okay (it was free on post) and transcription was part of that, and I was sooo slow at it. Had to keep rewinding the tapes to hear parts over again, and typing. I could not keep up at all with the speed of the tapes. :( I would imagine I wouldn't make diddly-squat, LOL. Maybe it's not the best job for me. My typing speed is only maybe about 60 wpm on my best days, and I do make some mistakes, which also slows me down. If I were a much better typist, maybe....thank you for all the info and advice!

Kristin, I'm so sorry - but this is very typical with IC or any other cases - everyone I've ever heard of, is ALWAYS denied the first time. Then they go hire a lawyer, and maybe the 2nd or third time, they are approved. The first time, EVERYONE is denied. ALWAYS. So please don't get discouraged, this is really just part of the process. In the meantime, thank goodness you won't starve, as your parents are there to help you, and so you are okay, for the most part. Just go see a lawyer (they will take part of your backpay for SS I think is what they do) and you'll win your case!

I'm sorry the docs screwed up the refill. :( Are you having bad bladder symptoms off the CyA, or are there other symptoms you are experiencing that aren't bladder-related? Just curious. I hope that you will be feeling better very soon and not hurting anymore. Hang in there a little longer! Everything will be okay!

I am feeling much better today, very little nausea today, almost normal, and my bladder feels almost normal, too, not bad at all. So today is a good day for me. I hope and pray so much that this med is finally starting to work for me.

Blessings, and hope you feel better soon,
Lori

Bozema

08-08-2006, 03:18 AM

Good morning everybody-

Kristen- Lori is right. Everybody gets denied for SSI the first time - absolutely everybody. This is part of the process, so don't let it get you down. I just fought a four month battle with the health insurance company for coverage for my PT and won. Perserverance is what pays off in these things - you just have to wear them down. Get a lawyer, keep fighting, and don't take it personally. Like everything else, you just gotta play the stupid game.

I'm sorry your prescription got goofed up - hopefully it will get filled soon.

I am flarey today - I basically overdid it yesterday, so its my own fault. I am off work this week and it will take it easy today.

Lori - glad to hear your are feeling better. 60WPM - sorry hon, but in my world that's FAST, even with some mistakes. I'd be lucky to make 40 these days and I'm gainfully employed. You'd get a job here no sweat - not many people we see have that kind of speed. Don't sell yourself short!!!!! You're probably fast enough for medical transcription would be my bet.

Have a great day everybody-

-Laurie

ICLori

08-08-2006, 05:09 AM

Thanks, Laurie! I'm sorry you have flared a bit, I hope you get much better very soon. Are you still better off, though, than before you began this drug? I mean, do you feel better off now than you were a couple or three months ago? I hope so.

My bladder is doing well today, either because of the Minocycline I had been taking (takes a few days for my bladder to get bad again after taking Minocycline) or because of CyA. I hope with all my heart it's the CyA working.

I hope Kristin won't get too down or anything - Kristin, if you are reading this, this is just part of the whole thing, it's just a step in the process, that's all - you hire a lawyer and next time you will be granted the SSI, and everything will be okay!

Laurie, I'm so glad you got insurance coverage for the PT, that's awesome!

Blessings,
Lori
P.S. Hoping for better times ahead for all of us.

IcyAngel23

08-08-2006, 03:03 PM

Thanks both of you. I know I was hoping I was going to be the small few who got it the first time around. I'm feeling like crap because I'm off the meds for a few days due to the error. 60WPM that's awesome. I'm not sure what mine is though but I'm sure it's up around that. I'm slow today cause I haven't been on too much so I need the constant pratice. Good for you!1 Yeah that's some good news. I'm glad you're feeling better too Lori. Love you both for being so supportive. Take care. Hugs all around and good vibes coming your way.

ICLori

08-08-2006, 03:41 PM

I know, it's really disappointing and infuriating that the system is set up this way. :(

But things will get better! Hopefully your IC symptoms will get better, too and the side effects will go away soon. I think you are probably over the worst of it now!

Blessings,
Lori

ICLori

08-09-2006, 04:37 AM

Just checking in again. Last night I almost made it without having to take any Ultram - but didn't quite get there. My bladder was just slightly fussy...barely noticeable but just enough that I felt I might not sleep well without the Ultram. I guess the Ultram is kind of my security blanket right now.

Anyway, yesterday and so far today have been just great, no bladder pain to speak of, except when I go to bed at night, then I noticed the slightest bit of irritation. Hoping that last bit of irritation might go away in another month or two on the CyA.

Not taking antibiotics anymore, since they made me so sick to my stomach.

Anyway, I'm feeling cautiously optimistic today that perhaps CyA will work for me and that eventually I may not need Ultram except on rare occasions.

Hope everyone else is getting better and better with each day.

I'm about at...can't remember now, I think I've done the regular dose for 6 1/2 weeks now - might be 7 1/2 weeks. Can't remember. But anyway, maybe hitting the 2 month mark is the "magic" for me for this med...oh I hope so much that my bladder continues to be this good, maybe that it even gets better...

Drinking orange juice now without any problems and also eating hot dogs (had some last night.) Those two foods used to give my bladder problems. I seem to be okay with them now.

Blessings,
Lori

Bozema

08-09-2006, 12:01 PM

Hi Lori-

Sorry to say I have a monster flare going at the moment - suspect a UTI - see my other post.

In answer to your question, today notwithstanding, I am much better with Cyclo than without it. Today's flare reminds me how bad it can be untreated. The pain last night was unbearable.

Anyway, gonna keep it short. Will check in again soon.

-Laurie

ICLori

08-09-2006, 12:55 PM

Hope you feel much better soon - it does sound like a UTI. :(

Thank you so much for answering my question, I sure appreciate you taking the time to do that when you are feeling so lousy now.

Blessings, feel better soon,
Lori

Godwillhelp

08-09-2006, 01:29 PM

Glad to hear you are doing pretty good today Lori.....I can't believe you drank OJ...just looking at that makes my bladder hurt!
That is a good sign I would think.......hope you keep feeling good!

I am trying to figure out why I still have flecks in my urine since I have been taking Cystoprek and it is supposed to be building my lining back up.....:hmm:

Dana

ICLori

08-09-2006, 01:32 PM

Hi, Dana, thanks! How long have you been taking the Cystoprotek? I think it's kind of along the same idea as Elmiron, isn't it, where you have to take it at least six months before it starts working? Anyway, I hope it kicks in soon for you!

Blessings,
Lori
P.S. I have had so much energy the last couple of days, since I haven't been in pain, that I hardly know what to do with myself! If this remission holds up and I end up symptom-free forever on CyA, I am going to have to go get a job, otherwise I will be so bored and restless! It feels so good to go from thinking, "a job would kill me if I had to work one" to "I'm going to be bored, I should look for a job." LOL! I am so happy for these past couple of pain-free days and I hope and pray that more will come, too....I can always hope...I'm almost afraid to hope, though, because I've tried so many things before and none of them worked for me....

Godwillhelp

08-09-2006, 02:26 PM

I have been taking the Cystoprek for 4 months....don't really know if it is helping or not.....still have pressure and frequency and these intersting white flecks. One person said it could be a sign of a kidney stone but I am not having pain or anything in my kidneys....I have pain in my sacrum area but that is no where near my kidneys. I have just recently discovered that many IC'ers have that low back pain and I had never thought that IC could be causing my sacrial pain. Now I am trying to figure out if it is a possibility.

Anyway....glad you are doing better Lori....prayers do get answered!

Dana

ICLori

08-10-2006, 10:12 AM

Just another update, still doing really really well on the Cyclosporine-A. I consider myself to be (at this point) in a remission, although I know it's too early really and I could always (probably will) flare again. But for now - I am so happy to not be in pain and to not be sick to my stomach or anything!

Hope that everyone is having a pain-free day.

Blessings,
Lori

ICLori

08-11-2006, 04:20 AM

Another update, bladder still doing just great (woo hoo!) and I'm thinking more and more with each passing day, maybe the CyA really is working for me!

I sure do miss you guys, Laurie and Kristin, and I'm worried because I know usually when you don't post, it means you aren't feeling well. :(

Hopefully the side effects will go away soon (almost certainly they will) and also the relief will kick in soon (most patients get relief by six months, and a good portion do by the three month mark, so hang in there!)

Blessings,
hoping everyone has a pain-free day,
Lori

marsi4

08-11-2006, 01:51 PM

Lori,

I'M really glad that you are having less pain, and feeling better. I hope this improvement continues and you get the relief that we all pray for.

Marsi4

ICLori

08-11-2006, 03:59 PM

Thank you so much, Marsi! I feel like that scene in "The Sound of Music" where she sings, "The Hills are Alive, with the Sound of Music...." I just want to jump with joy! I hope so much that you will soon be feeling this way with the botox taking away all your bladder pain and symptoms!

I know I shouldn't be too confident yet, a voice is telling me, don't get the hopes up yet because maybe this will be taken away too, maybe I will get worse again...but I am so happy for now at least! And I'm hoping that this remission is because of CyA and that it will last.

Blessings,
Lori

ISONormal

08-11-2006, 04:14 PM

Lori,
I've been following your posts closely, and I'm so thankful that you post your lows and highs so we can all get a sense of exactly what it is like on that drug, which I am looking into. So I'm thrilled about your not needing pain meds. Your post made me think of something funny, and I'm sure we could all use a laugh. Here it is, and it's a true story: When I was in college, I used to fly back and forth to campus, which was in another part of the country. As you know, the pressure in the cabin changes, and it can affect your hearing temporarily. Well, at the time I didn't know this. I realized during one flight that I could speak out loud and could not hear it at all. So I just started singing, at the top of my voice, "The HILLS ARE ALIVE, WITH THE SOUND OF MUSIC. .." etc., etc. I never realized until years later that evveryone else in the cabin was able to hear my singing -- even though I couldn't! My family loves that story.

:)

ICLori

08-12-2006, 03:06 AM

Oh, that's funny! :) Thanks for making me laugh! :) Yeah, I haven't needed pain meds now for several nights...am hoping maybe I won't ever need them again. I'll bet I'll flare a bit before my period, though, that's what I'm guessing - we will see - another couple of weeks. Anyway, I can't believe how much better I'm doing on CyA, I'm really starting to think that maybe this will work for me! Finally I am in the percentage of people who get relief, LOL!

When I look at the studies, the ones that show at six months, show a success rate of 75%. The other, older studies that examined patients on CyA after a year or longer, have an even higher success rate. So the longer you are on this, the more likely it is to work, and the better it works. Patients reported lessening symptoms (less frequency, greater capacity) even after the one year mark on CyA.

So far, from what I can tell, this is one of the most effective drugs we have for IC. It sure comes with a BUNCH of yucky side effects, though, and you have to get your liver and kidneys monitored very frequently on this, and then it raises your risk of cancer slightly. (I read 1-2%, which isn't bad, but I read that in a newsgroup and it was just a posting from someone who claimed they knew...who knows?) Anyway, it's not a med for the faint of heart, LOL! But I know you've already been through so much, the side effects will probably not even bother you at all, it will be nothing compared to what you've already gone through with your IC and the pain.

I'd say, if nothing else has worked that you've tried, and there's nothing left to try except bladder removal, and if you are relatively healthy (good liver and kidneys) and willing to take a chance...this drug is worth trying, because it does have a pretty good success rate.

Blessings, and good luck if you do try it,
Lori

swarr

08-12-2006, 06:42 AM

Lori,

I would like to know how your energy level is now? Do you still feel exhausted? I am glad you are doing better.

Sandy

ICLori

08-12-2006, 08:30 AM

Hi, Sandy, right now, I'm feeling more energetic and better than I have in the past six years since I was diagnosed with IC.

When I was in pain with IC, either the pain or maybe just the disease itself, made me feel more tired and less energetic than usual. I was still able to get most stuff done, but I spent a lot more time resting and didn't really enjoy life.

When I started having bad side effects from the Cyclosporine-A, I got even more tired, lots more tired. I felt like I was coming down with the flu, and felt more tired than ever before in my life. It was awful! That lasted about six weeks (ugh, it was HARD and I wondered if I would ever get better) and then for the last week or so I've felt great again. So I think my body finally at long last adjusted to the CyA. Most people who take CyA (I went and asked transplant patients on the internet) do have an adjustment period like that with CyA (most don't suffer as long as I did though) and then they get used to it and they feel great again.

Blessings,
Lori

ICLori

08-12-2006, 11:52 AM

I forgot to talk about a beneficial side effect of Cyclosporine-A...my hair!

Some people get a lot of fine, downy hair all over when they start this - I haven't, but I have had another common side effect -my hair is thicker and lusher than it's ever been in my whole life! I heard that could happen with this med, and I'm delighted to finally have a good head of hair, LOL! I'm going to grow it out some, now!

Blessings,
Lori

ICLori

08-13-2006, 04:28 AM

Well, I needed an Ultram last night. :( I guess I'm not quite 100% yet. :(

I drank 7-up yesterday (that's a big no-no for my bladder) thinking that I was 100%, and my bladder got irritable by the evening, so...for awhile still, no 7-up for me. I can handle Coca-Cola just fine, and orange juice, but 7-up has always really been bad for my bladder, and apparently I still can't quite handle that yet. Maybe in another month or two, who knows...

Blessings,
Lori

swarr

08-13-2006, 10:15 AM

Thanks for your reply. I am glad you have your energy back (I know how that feels). When I drink bad stuff for my bladder it still gives me a twinge now and then and reminds me I have to be careful.

Sandy

ICLori

08-13-2006, 10:45 AM

Yeah, I was too overconfident I guess. I'm just fine this morning and all of today so far, so I guess I still have to kind of avoid the worst triggers for now. Maybe in another month or two, as I get better and better (that's the pattern with this med, if it helps you, you tend to get better and better dramatically up to about 6 months, then better more slowly after that, and I have a long ways to go since it's only been 7 or 8 weeks now) I can try the worst triggers.

I know my bladder is now okay with what used to be moderate triggers of bladder pain for me - Coca Cola, orange juice, lemonade, tomato-based sauces, bananas - but apparently 7-up is still a no-no at this point for me.

I'm still sooo glad that I'm so much better, even if it's not quite 100% yet!

Hopefully everyone is having a pain-free day today - that's what I wish for all IC'ers, is a lifetime free of this terrible pain.

Blessings,
Lori

violet

08-13-2006, 05:48 PM

Lori, Hi I haven't wrote to you in a long time. A while ago you said that ultram was't working for you anymore. What did you do to make it work again. I am taking it everyday and I am so afried it will stop working. I am on cymbalta right but its not working thats why I still take ultram. I am reading all about cya and I am kind of scared to try it because of all the side effects but If I don't get relief soon I will go to the doc. and see if he will give it to me. Talk to you soon. violet

ICLori

08-14-2006, 04:16 AM

Hi, Violet, if the Cymbalta and Ultram combo is working pretty good for you, there's no reason to think it will stop working or anything...CyA or other medicines are always in the wings, though, just in case

What happened in my case was that my pain flared up to the point where Ultram just wasn't strong enough anymore. But especially since I started getting better on the CyA, even half an Ultram is plenty enough when my bladder is irritable - my bladder has just gotten so incredibly much better on the CyA. I'm almost in remission, and I hope in another month or two, to perhaps be in full remission where I can drink 7-up with no problems. (Right now, 7-up still gives me some irritation.)

If you decide at some point that you would like to take CyA, and have tried every other IC med available and that hasn't worked, then the best thing to do would be to take the study abstracts (do a search on the boards and read through, you will see the studies, Jason especially did a thread with two full studies posted in PDF format, that you can print out and take to your doctor) to your doctor. I can guarantee you that if you just walk in with nothing in your hands and say to your doc, "I want to try Cyclosporine-A, some ladies on the boards are trying it now" he will say "no" unless he is one of the rare, "with-it" modern uros who has kept up-to-date on CyA and other studies on IC. The only way I got to try CyA, was that I printed out and brought studies to my urogyn. Studies are all they listen to - not us. So anyway, just wanted to let you know that so you can be prepared before you go to your doctor.

Blessings, and best of luck to you...
Lori

Bozema

08-14-2006, 07:30 AM

Hi Everyone-

Lori - Glad to hear you are doing better, even if a little ultram is needed here and there - that's about typical for how it goes with cyclo. Even at 15 weeks, I was taking some baclofen, though a lot less than I am now. Kristen - I'm sorry to hear you were off cyclosporine for an entire week. Hopefully it won't be too much of a setback.

I had a horrific flare last week - probably the worst I've had in 6 months - and I'm still dealing with it, though it is a little better. So much for a week off from work resting and relaxing - actually the week basically sucked. I was able to get ahold of the doctor's office last week and get in - no UTI. I saw the physician's assistants, not the doctor. The PA who knows my case was there, but she is leaving to go work at another office, so they have assigned me to a new PA who knows nothing about me and we had to start from scratch. I didn't feel like she understood my history or the program I'm on - actually she struck me as sort of clueless. They gave some supplement to alkalanize my urine (which is doing nothing) and I have an appointment with the doctor on September 1, which is probably the best outcome of the whole experience. Hopefully by then the cyclo will be working better than it is now and I'll be feeling better anyway.

I am pretty much chalking up this flare to too much physical activity last weekend combined with PMS - the week before my period always seems to be the worst for flares. Today seems a bit better than yesterday, so hopefully things are settling down. I'm frustrated and worried about my lack of progress given I'm at 9 weeks now, though I know it's still too soon to tell. Perhaps within the next week or so, with my period over, things will start to kick in.

Anyway, frustrated but hanging in there....

-Laurie

ICLori

08-14-2006, 10:18 AM

Hi, Laurie, thanks for posting on the boards!

I'm so bummed that you've been in a terrible flare - I was hoping so much that you were getting better! Well, I have the feeling that's how it goes with CyA, two steps forward, then one step back. So maybe we'll have to put up with flares for a few months before it really settles down for good. And maybe we will always have a rare flare here and there, even with the CyA. But I think the chances are good that maybe we won't have any more bladder pain, once we've reached the six month or one year mark. Remember that study, where it said, something like 21 out of 23 had NO bladder pain whatsoever (ever!) at the one-year mark? I hope that we will be so lucky!

And also, remember how the frequency etc. got even better, after one year, it's as if the patients continued to get better and better each year they were on CyA? I found that so incredibly hopeful - it told me, the longer I was on this, the better I would feel, the more good days I would have, the fewer bad days.

Hang in there, dear friend - this will work for you, I'm certain! You will get again to that point where you were before - flareproof! And I think it will happen pretty soon, too, like within another 1-2 months! Maybe even sooner.

Sending good healing vibes your way! Also hoping that Kristin is feeling better now and will heal very soon.

Blessings,
Lori
P.S. nodding in agreement at your post about docs not knowing anything and being clueless - boy, haven't we all been there, unfortunately! :) someday docs will know more about IC!

violet

08-14-2006, 06:03 PM

Lori, Hi again. I'm wondering, said one of the side effects might be downy hair growing all over your body. If this happens does it go away? I really don't want hair growing all over my body. I printed the reports about cya so I have them to take to my Doc. The cymbalta nd the ultram aren't working well at all I still have pain even when I take the ultram. I take four ultrams a day and could use more but I'm afried to use more. I will wait alittle longer before I go back to the doc. Thank you

ICLori

08-15-2006, 03:51 AM

Hi, Violet, that is a potential side effect, Laurie said she noticed some of that (don't know how bad it is or anything). I don't have that, myself, although the hair on my head is fuller than it's ever been in my life, which is a side effect that CyA can have. It's a side effect I like! :)

All I know is if it does happen, it goes away again when you go off CyA. People who have it say it's really not noticeable or bothersome. You know how blonde women sometimes have that fine downy hair on their faces? I guess it would be something like that.

Anyway, keeping my fingers crossed for you that your doctor will help you,
Blessings,
Lori

Bozema

08-15-2006, 04:17 AM

Hi Violet-

I am having the hair growth side effect. It is very fine, pale baby fuzz that I notice on my face and arms. It is so fine and pale, I doubt anyone else notices it, though it annoys me. When I get my hair cut in a couple weeks, I'm going to get a little facial waxing done to make myself happy. When I stopped cyclosporine for 6 weeks last spring, it went away within a couple weeks. I'm back on cyclo and it is back again. I'm hoping that when I go on the lower maintenance dose in a couple months, the hair will subside or go away all together. From what I've read, I have every reason to think that will be the case. In the meantime, I don't look like a woolly mammoth and it is not so bad that I'll stop the drug. In my mind, it's better than the possible hair loss from elmiron since I can always wax it away.

-Laurie

ICLori

08-15-2006, 07:47 AM

Thanks for answering that one, Laurie, I was hoping you'd pop in and see that question!

I sure am loving my new full head of hair, though, LOL. I should explain - I've always had baby fine hair. I have an average number of hairs on my head, but each strand has always been so thin and fine, that it looked like I had really wimpy hair. All through the big hair decades of the 70's and 80's, I lamented my hair and wished I had big, full hair.

Well, now I seem to have something like 25% more hair on my head, I would estimate. I mean, it's really a noticeable, big difference in how much hair I have. So, even though my hair texture is still fine, it's looking like I have a big, thick, full head of hair. I love it - finally have the hair I wanted all those years ago! I'd still prefer medium-textured rather than fine-textured hair, but...this is good enough.

Oh, I had to use an Ultram last night again. :( I didn't eat or drink anything especially "wrong" either. Have no idea why I had some bladder irritation last night. I was pretty bummed out. Each time I have an episode, I wonder, will I ever get better? But then I think back to how I was before I started CyA, where I was in pain during the day quite often, as well as at night, and I can see I am still better than I was, so at least I'm going in the right direction. I just hope I get to the point, within a few months, where I don't need Ultram at all!

Blessings,
Lori

violet

08-15-2006, 05:10 PM

Thank you all for your answers. The hair problem doe't sound so bad now. I have dark hair so I hope if I get on this med. and I get downy hair I hope it will be very light colored. What color of hair do you haveLaurie? I mean the hair on your head? Thank you

Bozema

08-16-2006, 05:58 AM

Hi Violet-

I have medium/dark blonde hair that is somewhat fine in texture (and very curly!) and I'm very fair-skinned. However, this new hair is even finer and much blonder than my own. I don't seem to be getting it on my torso at all - just a very fine slight fuzz on my chin and cheeks and my arm hair seems a bit longer and finer. Since I shave my legs anyway, I have no idea if I'm getting it there. As I mentioned yesterday, it is so minor that I'm certain that no one else has even noticed it, even my DH. My hair stylist did suggest at one point that I get my eyebrows waxed because of a few funny stray blonde hairs that were so fine I couldn't even pull them with tweezers. So I did - no big deal.

I worried about this side effect in the beginning too - I had visions of getting chest hair like Austin Powers - but it didn't happen. From what I understand, only about 20% of cyclosporine users experience the hair growth side effect. If most of the 20% have an experience like mine, then it's a mild annoyance and really no big deal. Upon decreasing the dose to the maintenance level, the hair problem usually disappears, so overall I'm not too worried about it, especially since it quickly vanished when I briefly discontinued the drug. The problem is so minor that I haven't even brought it up with my doctor. With IC, I figure I have bigger issues to deal with. I definitely wouldn't let this possible side effect deter you from trying the drug if you think it might be a good choice for you.

I hope this helps and good luck to you.

-Laurie

IcyAngel23

08-16-2006, 11:10 AM

Laurie-

Good advice. I'm dark blonde too with light highlights and my hair is growing like crazy. My eyelashes and eyebrows too. So nothing to complain about in that department. I've been missing on the boards because I'm back on CyA after a week of not being on it. Stupid pharmacy. I'm happy to say I'm doing great again. I'm very tired and I can't seem to get over that but I muddle thru. I'm antsy and I just wants to get out of this crappy body. So I'm having trouble sleepinf too. My brother is coming home from Iraq soon so we are all on edge waiting to see him. I'ts been 8months and I can tell in his voice that he isn't the same Ryan. So I'm hoping he'll jump right back into the swing of things, when he gets home.
Lori-
How are you doing these days? I find myself more and more staying away from my computer. I think it's me feeling that my computer isn't the only thing to do these days. Before it was all I could do to stay sane and now I'm out and about having a good time.
Well today I woke up and someone spray painted my carv with white and black paint. I don't remember pissing anyone off lately. (J/K) I was so surprised that someone did that and only to my car. I think it might be a friend of my ex's. My ex feels like he's the victim in all of this. whicg he is off his rocker if he really believes that. So I'll be spending tomorrow cleaning my car cause today I'm making a family dinner for my extened family. Well I love you two so much and I hope you're feeling less imprisoned on Cya. I till have a long way til I'm better but I do see improvements and any improvement is a step up.
I'm worried about going to San diego to see my bro because of how germy planes are and I'm so drained I want to enjoy my fun in the sun. Thanks for being awesome friends. Take care.

Kristin

IcyAngel23

08-16-2006, 11:15 AM

Lori-

I'm with you on thinking everytime a flare comes is a step backwards. I'm not enjoing my 20's at all and I want a normal life but that's not reality. So I just have to think this IC has happend to me for a reason. Maybe I need this time off from everything or maybe I'm suppose to blaze the trails for those who come after me. I'm so lucky to have wonderful family and friends that some days it isn't too bad. I just need to cry every so often to let my fear and frustration out. So take time to cry and let it all out.

ICLori

08-16-2006, 05:46 PM

Hi, Kristin, it's great to hear from you, and I totally understand about wanting to get out and live life now that you are better, I'm the same way! I hope you continue to get better and better each day.

I know the tiredness is awful, but hold on - pretty soon you'll come out of it. One day I just woke up and realized I was about 100% better - I'm sure that's what will happen to you, too. Another month at the most - maybe less time (hopefully less time) than that.

I'm still having some bladder irritation at night and I hope that goes away soon. Last night I was fine, tonight I have some irritation but not as bad as it used to be. Hopefully I will keep improving as time goes on.

Maybe this IC was meant for us to develop spiritually - it is said we develop that way through suffering sometimes. I like to think that everything is for a reason...

Blessings, hoping for painfree days for all soon,
Lori
P.S. Sorry too about your car, that's awful - I'm betting it was your ex, too, what a terrible thing! Hope your visit goes well with your brother!

IcyAngel23

08-18-2006, 07:16 AM

Lori-

Thanks we are in countdown mode for San Diego. I'm going to my first big concert since IC so this will be the test tonight. Both of my fav. bands are playing. they never play together because they are both huge bands. Goo Goo Dolls and Counting Crows. Check out longer december for CC. It talks about this year being better than the last. It always gives me a boost. My uncle came over and cleaned the pain off of my car cause it was so hot here. CyA and the sun don't mix very well for me.
Yeah!!!! Glad to hear you're getting to full remission. We are the three musketeers (sp?) like Lousie said. We are doing our part to further the research on this for IC. One day this will be prescribed like elmiron. I did find an article by Parsons about CyA (July 7) but I dont have the membership to read it. I'm sure it's him jumping on the gravy train. I told hom about CyA. He had no idea about it at all for IC. Well I';m done rambling and I'm so happy to hear everyone is doing just fine.
take care
Kristin