Interstitial Cystitis Returns

My symptoms were so minor I believed I was going into remission, or at least the cold fronts wouldn't do much harm to me. You couldn't really call what passed a cold front because we kept the AC on, but my body certainly felt it. I'm taking my heaviest meds and sitting on a heating pad in hopes of stopping it from becoming worse before work, and it's completely drained my motivation to do any of the activities I usually enjoy.

All the hope I had earlier of lasting a whole year at a job is basically gone now. If such a minor front could hurt me enough to distract me from my favorite activities, then how bad is it going to be when the major ones start rolling through? I know I positively won't be able to work the 20 hours a week that I do now. As a cashier, there's a lot of walking and standing involved. I already asked about accommodations for a wheel chair and all they had to do was point at the space in the stall.

There's only two registers in one stall, and it's not wide enough for a wheel chair or short enough for one. They could possibly let me sit on a stool, but half of my job is walking around straightening up product. In short, once I get that bad, I think they'll let me go.

My mom has already proven to be very disappointed in me and on the verge of labeling me a hypochondriac from last year despite me being fine this whole summer. If I did lose the job I'd face verbal abuse all day since she works even less hours than I do.

I know stress makes IC worse, but how can I not be stressed in this predicament? If I just had someone to say, "It will be alright. Just do what you can," my stress levels would be so much lower. My family is also saying that I'm "projecting" what will happen to me and so it will happen. which sounds more like they think magic is real to me. I wasn't thinking anything bad was going to happen until that surprise cold front hit and I had to run to the bathroom every two hours and had the worse day at work yet since we only have two people working there at a time, making bathroom breaks guilt-filled.

I wanted to go back to school for teaching since I was doing so much better, but I don't think that will ever be possible. I'm going to have to look into web design or some other stay at home job that isn't a scam just so I don't feel worthless all over again.

IC and time management

The hardest thing to me right now is time management. Either I hold my urine in and get things done then hurt really, really badly when I'm done with work for the day, or I go to the bathroom as needed and suffer mild to moderate spasm pains for up to an hour after each time, not ideal for a job setting. I can't even be productive with it in a home setting. Today I found sources for an up coming term paper, had to do a 40% water change to my aquarium, and had to clean the gerbil cage. This is just the stuff I do for *me*. Next there was towels and garbage cans. The Aquarium gave me a lot of trouble so it was 6 hours until I got to go to the bathroom. Thankfully there are heating pads here to help, but I wonder what I'd do at a job? This is why I'm hoping for part time hours. I did submit my resume to four places. Guess I'll keep my fingers crossed. There's no way I could survive the fast pace of a restaurant or anything involving walking/pelvic jostling. Not unless they want an employee in a wheelchair, but then they'd find some other reason to fire me for. Current news is nothing much. I did find a place that can batter fry shrimp in plain flour. It comes with the spice taste without the spice (or at least not enough to hurt me) and it feels like I'm dining at the world's most expensive restaurant. It's pretty great. Also I've decided to start getting my birth control pills from Planned Parenthood through their HOPE program, which means I don't have to get naked to get a pill just like people in all other first world countries who can get over-the-counter pills or just have to let a nurse check their blood pressure. While I know it's important, I've decided to follow Northern Europe's guidelines of every 3-5 years. It's a slow growing cancer. Most who die never had it checked, not that they were too late (unless there was symptoms). Not sure why the doctors here don't understand this or read the latest guidelines. Well, it's a weight off my back. Like all other ICers know, pelvic exams can really hurt not to mention my own personal sense of violation one once is done against my will due to coercion to get the pills I need to stop period flares. That's no relationship I'd put up with a man, and so that's no relationship I'll put up with a doctor. ..also.. was hoping to make some pocket change from this. But the certain affiliate I'm using hasn't so much as given me 10 cents since starting this blog. Page views should at least be worth something, right? The advertisements aren't even IC related half the time.

Is Cyclosporine the cure to IC?

I can't say either way. It turns out my symptoms are from pelvic floor dysfunction, which comes packaged with IC. So, by the time I started the Elmiron had healed my bladder. There is still a lot of enthusiasm for this therapy, and should my IC return I wouldn't hesitate on using the medication again. I say go for it. I had no bad side effects.

The cyclosporine was the main purpose for this blog, but I'll continue dictating life as an ICer. I have pictures of the leg blots left by our heating pads I wish to give to my Uro for free use as well as to the ICN so people won't freak out when they see them. My uro said it doesn't harm you, it basically makes you look ugly in a place most people will never see. I plan to cover mine with a tattoo if I can ever defeat this disease.

I used my wheelchair today at school for the first time. Freak cold front came through with the storms. It was an interesting learning experience. Wheelchairs = hard outdoors, but fun when going downhill (and I'm immune to the flooding in my lower-than-ocean-level-city. 6 inch puddle coming up? No problem! ). I kinda used it as a skateboard, using a foot and my hands to help out unless I was hitting a puddle. The issue is the jostling walking causes and not having cushion under my tush, but it solved both those issues and I could still use my legs to help push along the uphill areas. In class it was much more comfortable to my bladder than hardwood straight backed chairs. I could recline to my hearts content.

It's also a great arm work out, which I badly need.

I haven't been posting much because I've generally been feeling better plus school is getting very hard. It's my final semester. I'm worry what I'm going to do for a job once I get out. I need to work summers at least if I hope to claim disability if things turn out for the worse and I always need a plan A, a plan B, and a plan C. Right now we're trying on starting a home computer repair business.. but when you live in a rice patty.. there's not much of a customer base. I could probably make more selling the animals in my yard since PetSmart seems to carry the majority of them as pets (red eared sliders, green anoles, gardner snakes, etc).

Internet Friends

My closest friends are miles and states away from me, but we talk everyday through games and Facebook. Some professionals say this in unhealthy, and online friends can never replace real friends, but after a recent catastrophe on Facebook of my family saying I "complain too much" about my pain and I going on a purging spree of those who weren't truly my friends and family members who'll never hear another word from me I realized who my true friends are.

One of them said they got me something for my birthday. I thought it'd be some game item that you pay cash for, usually cheap. I'm like, okay. Well, weeks later a huge box arrived at my door.

What was it?

A wheelchair!

While my community and family dismissed me, my online friends went far and beyond and did what those who should be doing didn't do. My mom gave a away a free chair after I asked for one.

Her reaction to the present? "I made them pity me with all my complaining." Hah. It's a damn good, comfortable, and portable chair that they used amazon gift cards for to get it really cheap. She was extremely annoyed. Said I should send it back. I'm at the point where I've lost all respect for this woman. She has Jackle and Hyde moments. There are times when she brings me IC safe foods in bed, then there are times like those above. I think I broke her bubble of denial. Or perhaps made her feel guilty that it was total strangers (to her) who gave me such a great gift. To you two guys I'm talking about, thanks <3

This is IC and this is what it does to your mind and body.

This is something someone linked that had been written by me. So I figured I'd just put it here too.

This is a post written amidst a flare. I will be hateful, politically incorrect, and highly offensive with bad words. This is also a public post because it needs to be heard, or at least, what IC does to a person's mentality.

I hate everyone today. I had to go get blood drawn but had to be driven an hour there and an hour back to the lab. I didn't feel the needle. It went great. I was already in a flare. I've been in once for the past 2 days, but the meds I've been taking made it bearable and I could play games and distract myself. Walking and leave the house is a bad idea. But I had to today.

I brought heating pad with me. Ride there and ride back as okay, but we needed to go to walmart to pick up Kleenex and maybe something edible for me. I find that matching my usual walk fast pace just makes it worse, so I ask James to tiptoe with me as it's the only way I could do it. All the wheelchairs for taken -- by fat women. Fat fucks who, SURPRISE, riding in a wheel chair isn't going to fix that. And these women all seemed chipper. Well of course, they weren't sick. maybe walking just her because they were so fucking fat. Who knows. So I just brave it out.

I get to the cereal aisle and a spasm punches me in the gut. This type of pain is hard to describe. The simplest way is to say imagine the worst bladder infection you've ever had, but no medication will stop the pain. But I'll say it felt like I hadn't urinated for 24 hours beforehand, and this new spasm felt like my bladder was ripping apart. I told James I was out of there. I had to go back to the car, put on the heating pad, and lay down.

I blame it on the fat fucks. If I could have gotten a chair the jostling wouldn't have triggered this. I wish their leg/back pain would kill them, but it won't, so they'll just get fatter and keep using the chairs. This is why I want my own damn wheel chair. This season is destroying me like it always does. Will I graduate this year? I have no idea. If the IC behaves, yes, I will. if not then no, I have to waste yet another year on online courses and another year keeping me away from getting a job I can do online.

I hate all the healthy people. I hear this is common with cancer patients too. I hate them. I despise them and their first world problems that they complain about. I'd trade them.

Do you want to pray for me? Please do. Even though I despise organized religion of any kind, I'm not a scrooge about it. I prayed constantly last year. Deus ex machina didn't happen.

I'm hurting bad. I can't even play with James and it feels like I'm wasting his vacation. I went to bed early last night. I woke up early. It doesn't matter what time of day it is, it will hurt. Until some asshole finally decides to do research on temperature change and chronic illnesses I think we're all fucked. I know my other chronically ill friends are having a hard time this winter too. Something is happening, but no one cares to research it because it brings in no money.

This isn't an infection I don't think because last night I felt pretty normal. The morning/dayti flares are what are destroying me.

I'm taking Valium, soma, elimiron, utira-c, oxybutinin, and benedryl, and even with all this shit still I feel like my bladder is destroying itself.

Now factor in the only thing I can safely eat are mostly tasteless things. Plain rice, some wheat, and if I'm brave then mild cheddar cheese. So I sit watching these fat fucks stuff their mouths with McDonald's breakfast items (which I love and crave) and then watch them scoot on out with the customary Wal-mart scooters and I'm expected not to hate them.

I'm usually not a hateful person, not ever, I don't even hate Hitler, I just want to understand why he did what he did and say it was wrong but from that viewpoint (evidently his mother was impregnated by a rich Jewish guy she worked for, or so the school databases suggest with some evidence such as Hitler turning the graveyard his "dad" was buried in into an artillery range so that everything would be destroyed..) So no, I don't hate him. Not even him.

But now? Today? At this moment? I'm filled with it for everyone. Even those who didn't take the chairs. I suppose it comes with the "why me?" sentiment.

So what now? James won't and can't move to South America every winter. I can't work outside the home unless this goes into remission. And at 26 I am kicked off my step dad's insurance plan. That blood test that I have to do every month costs $140 by itself without insurance. Elmiron costs $500, and I won't even bother looking into the others unless I want to depress myself me. I don't think this thing will go into remission within 3 years.

So what do I do now? The worst part is NO ONE CAN SEE THIS. It is not visible. If I took the chair I'd be glared at. If I accepted my doctor's offer for a handicapped parking spot I'd be glared at. But right now I am handicapped, badly handicapped. No housework will be done today, and my mom won't let me forget.

If my bladder is removed it'll do nothing. It's the muscles triggering it. But they're connected to everything down there and can't be removed.

Will the Republicans pay for my medications? No. Will the Democrats? Maybe, but I'm not so hopeful. I can't get disability because I never had a chance to work because of this. I can get SSI, but when look at me and my age and depending on the day I can look pretty damn healthy I suspect I'll be denied repeatedly. Will my urologist vouch for me? Maybe. But she's already stuck her head out for me by giving me all these pills and I'd hate to put more work on her. In the end I may have to. I guess along with James, Chris, and my other chronically friends she is the only other person I don't hate right now.

So now what? Seriously. Tell me what you would do in this situation. I just want to get my degree and go for a masters. I would love the hell out of being a teacher student. But I can't. I'm crippled, but not crippled enough for the government to help me.

I'm cross posting this everywhere. THIS IS IC AND THIS IS WHAT IT DOES. THIS IS WHY I DON'T VISIT MY FAMILY. THIS IS WHY I CAN'T VISIT MY GRANDMOTHER IN THE HOSPITAL. THIS IS THE REASON MY BOYFRIEND MAY EVENTUALLY BREAK UP WITH ME (though he's been a trooper so far). You can all stop making me feel guilty. Perhaps it'll lessen my hate a little.

Second Day of School

I woke up when it was time to leave to had to rush. Thankfully no pain. No pain at all. Not until class was over and I had to do some walking to finalize some errands, then the spasms started. There was a big cold front last night, so I'm surprised I woke up feeling well.

I took my meds, finished my errands, got home and sat on a heating pad before letting my bladder empty itself then that's when the worst pain comes. Well, after going to the bathroom I'm tethered to the heating pad. Its bearable, but makes me not want to move. At all. I really think a wheel chair would be the best option for me for now.. but they are expensive, my insurance won't cover rent on one for a few months, and my mom thinks I'm being dramatic.

So that's my status update. There's housework that needs to be done and I will be screamed at for not doing them, but I'm not leaving this heating pad until I feel "normal" again.