Typical Story, Tired of Fending for Myself

[ScrapDragon]

Hello, I have been reading these forums once in a while for the past yearish. I started having anxiety attacks and severe depression back in 1997. I was in bed for almost a year. In 1998, I was diagnosed with IBS and the anxiety seemed to dissipate. I was mostly functional and even took on a part time job in 1999. In 2000, we moved to another state and I was living a great life, making new friends and completely off all medications. Then, out of the blue, in 2002, I started having major anxiety attacks that were way worse than when I had them before. I had to quit my job and nobody could tell my why I was having them. After about twenty visits to the doctor for UTIs, I finally was in an urgent care office on a Sunday where the doctor on duty finally suggested I had a real problem that wasn't in my head. I was sent to a urologist who did the wonderfully painful bladder expansion test and diagnosed me with ICS. It is now about 9 months and I am back to work part time but am exhausted ALL of the time. I have been going through the DMSO treatments but the smell has me heaving my guts out for a day or two afterwards. The antibiotics don't help, they make me sick, too. I hate the diet because I had to give up all the things I love and I never really liked food in the first place. I am incredibly sensitive to drugs and am tired of telling that to the medical people. I was recently in the emergency room and they tried to send me home with two vicodin pills. One knocks me out cold and keeps me throwing up for a couple days. The nurse was ****** when I refused to take it. I told her all I needed for the pain (I recently had pneumonia and coughed the cartilage away from my ribs - ouch!!!) was one little Motrin. She came back with a triple dose Motrin that I also refused and when I saw the megadose antibiotic, I requested the child size dose. I was then diagnosed with severe anxiety in the emergency room. I guess once you have that stigma it never goes away. They sent me home to rest and recover and my amazing boss hooked me up with a laptop so I could work from home - he knows how stir crazy I get when I don't feel like I am making a difference in this world. I hate the DMSO treatments but am afraid to stop, since they do seem to have helped. I hate ALL antibiotics, I am allergic to half of them and the other half makes me sick. I am tired of trying to balance my diet with the diet of my hypoglycemic daughter and I HATE COOKING!!! Here I lay in my bed, wishing I could exercise and wishing all this stuff would go away and wishing someone here wouldn't tell me how great I look when I feel so awful. Can I vent or what?!? Any encouragement would be great, because even though I have a great husband and great kids, my being "sick" is getting old for them, too.

[vm]

:welcome: Glad you de-lurked. ;)

You sound really stressed out. :( I am glad you went ahead and posted. I remember reading for a couple of months before I ever posted and it really makes a difference to type out your thoughts and then get posts written back DIRECTLY to you!

Have you tried anything besides DMSO? I know you are sensitive to meds, so you may not have, but thought I would ask.

[ScrapDragon]

No, I alway get different nurses for the DMSO treatments and most of them can't answer my questions when I do ask. I have only seen the urologist twice. The first time for the diagnosis and the second time after six weeks of DMSO where he moved me from weekly to every other week and recommended I go to my regular doctor for help with my diet and anxiety issues. I cried that day because I was sooooo hungry and didn't know what to eat. I have since bought the ICS Cookbook. It helps a little.

[vm]

So all they have told you about is DMSO????? I'll tell you what helped me a lot ---- the ICN Patient Handbook, which can be found at this link: www.ic-network.com/handbook It has wonderful information about the common treatments for IC as well as great coping tips. That information helped me so much and left me feeling empowered. I felt so at the mercy of this disease in the beginning - reading about it and educating myself as much as I possibly could helped immensely.

I will tell you that most people with IC do go on to find treatments that help them feel better. Honest. It's the trial and eror to get there that stinks, but it is worth it in the end.

[ScrapDragon]

I have that handbook. I bought it when I bought the cookbook. I just was so overwhelmed by all the stuff in it and I was just starting the DMSO thing. I'm terrified at trying new drugs because I never know what is going to happen and I am pretty much guaranteed to have the side effects if there are any. Thanks for writing back. I really needed to vent on this. I think I'll go pull out that book again. 8-)

[vm]

Are you talking about Dr. Moldwin's book? That's a really good one. :) But the ICN has its own little handbook - just online as far as I know.

Sometimes just venting does wonders, doesn't it? ;) I learn that over and over again. LOL

[ICNDonna]

I'm very glad you found the IC Network. :welcome:

I know the IC diet can be very challenging at the beginning --- I'm hypoglycemic along with having IC so I know it's a double challenge. But it's most definitely worth it.

I also have some medication problems. When I get a new prescription, I ask the pharmacist to fill it with only a few days supply --- that way if I have a reaction I don't have a whole bottle of pills to destroy. Then if I find I can tolerate it, I get the remainder of the prescription. Nausea is a biggie for me, especially with pain medications. My doctor solved that problem by prescribing phenergan tablets for me to take with the pain meds. It works like a charm.

Kim is right in saying that most ICers find medications/treatments that work well and most of us do lead normal lives. It may take a while, but you will get there too.

Sending gentle hugs and healing thoughts,
Donna

[SandyRN]

Welcome to the board.

I know how being sick can get old to kids and loved ones. My kids and bf are wonderful, but I can see it in their eyes that they're tired of it when I say I dont feel well yet again.

I have gotten to the point where some days I just lie when anyone asks how I feel. I say I feel fine when I feel like crap. It's just easier that way...but they all know the truth.

I'm amazed that a nurse had a problem when you didnt want 2 vicodin...usually it's when we want more meds they get an attitude. I am on medical leave from being a nurse, and it's hard to be a patient. I've learned a whole new world is out there, that world is being one of the sick, and every single one of those demeaning doctors and nurses ought to have just a taste of what we deal with so they can understand what it feels like.

I'm sorry you're having such a hard time, but it's a good thing that you decided to open up here. It's a great place to vent, and a great place to make friends.

Take care, Sandy

[kadi]

Hi there,
There was so much I could relate to in your post. You are not alone. I also have multiple medication allergies and intolerances. (I wear a MedicAlert with the major antibiotic & painkiller classifications that I cannot tolerate, because there are too many for even me to remember on the spot.) I also have had trouble with anxiety my whole life. I've read that some researchers believe that the IC and panic attacks may be connected genetically somehow. It wouldn't surprise me, both things run in my family.

Definitely check out the patient handbook link that vm gave you - it has been a lifesaver for me - especially the diet section. Yes, the diet is really frustrating, but I have found that the better I got at following the diet, the less pain I had & the less medication I needed. (which is essential for someone like me).

The only reason you should need an antibiotic for IC is if you have developed an infection. IC in itself does not respond to antibiotics. One thing you can do is that if your symptoms suddenly spike, you can get your urine tested for infection and you can request a "culture & sensitivity" test, where they test your urine for exactly which antibiotics will kill the infection, that way you're only going to take what will work & you should need less antibiotic that way...

Please check out the handbook, it really helped me to know that there are so many treatment options out there. It reduced my ever-present fear of "what if I can't take this medicine?" or "what if that fails"? There's always something more, so don't lose hope. It takes awhile to find what will work for you, but I believe that you will find things that help and you will feel better. It won't always be like this.

Wishing you better days soon!

[ScrapDragon]

You guys are all so great! I can't belive I took so long to vent here. I fell perky already. OK, maybe that's a little overboard. Mentally, I feel better, how's that? Back on the wagon, but craving salt badly. Don't miss the caffeine anymore. I cheated about two weeks ago when I hadn't had any in a couple months and paid dearly for it. Not just in my bladder, I was up until 2:00am with the jitters. Don't remember that part back in the day. Soda used to be my life blood. Watermelon is my new love - can't live without it. Nobody in my house will even eat it anymore. 8-) Hee, Hee, the more for me. Thanks, LOTS!!!

[SandyRN]

I LOVE watermelon too. It doesnt bother my bladder like some fruits do, its not fattening, it cures my sweet tooth with hardly any calories, and its full of water. What could be more perfect?

I am gonna have to go to the store and buy a big one now lol!

Glad you are feeling a bit better!