Positive Thinking is Negative

The weather has been steady so I've been fine.. completely normal. I keep a 9 day forecast on my desktop at all times so I can request that day off if there is a cold front.

That aside, I came over an interesting post on Reddit. It was about a guy asking advice about how to make his girlfriend with cancer feel better. The most up-voted comment was along the lines of don't tell her to be positive.

The exact quote was, "Do not, I repeat do not, tell her to keep a positive attitude. Instead, show her that whatever she's feeling (fear, anger, frustration, etc...) is OK and you can handle it.

I recommend this interview and book: http://www.npr.org/templates/story/story.php?storyId=113758696"

Tonight, after texting my mom for a bit and her telling me to look for a better job with my response being I don't want to burn bridges by getting a great job then flaring so bad I have to quit in the first month, she told me, "don't be negative."

Is predicting something that happened every year for the last three years being negative or just being practical? It may not happen this year (or to be more precise, it could be a mild winter since its already demonstrated that it WILL still flare in cold fronts) and I'll seem healthy.. but that's the problem with invisible illnesses. Next winter I might not be so lucky.. and then what? Is it my fault because I wasn't positive enough? I feel this is a problem with ANY chronic health condition. Saying "stay positive" or "don't be so negative" is like saying, "Stop being a pussy. If you were stronger then you wouldn't be sick."

The thread also discusses how so many friends abandon you when your sick because they don't know how to handle it.. and how its mostly an age thing. It was a really interesting read, so I encourage you to click on the reddit link above since it'll send you straight there.

Cold Front Incoming

There's a huge cold front coming in. As of right now it is 71 F, and Rainmeter says that in two days it will be 43 F.

Current pressure is at 29.94 in.

I'm doing okay as of right now. I'm off for the next three days thankfully so I can see what happens and what I must decide to do about my work schedule for the rest of the season.

Cold Fronts are Starting

Last week I had a bladder infection and now I'm in pain because the weather just dropped by twenty degrees. I have a 7 hour shift tomorrow and with someone on vacation I'm having a longer work week than normal but don't think I'll be able to hold up unless the weather steadies out. My workplace doesn't make accommodations for wheel chairs and walking turns very painful for me.

I'm already tempted to put in my two weeks notice, but then how am I going to live if I don't 'tough it out' so I'm not 'living on your dollar'?

If it is another infection then I'm screwed, as that would mean its now immune to yet another anti-biotic and I'm already allergic to all with sulfur in it. Last year it became immune to macrobid. I'm positive its the IC symptoms allowing the infection to return. All summer I didn't have a single problem and lived a normal life.

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.

Nachos are good mmkay? Colds fronts are bad mmkay?

Had nachos for the first time in 4 years yesterday. Only unsafe ingredient was salt. Today I'm in spasms, not because of the food, but because it's Louisiana. This is what the weather said:

"Hey, it's spring! Look at the redbirds and blue birds and how warm it is!"

Then today:

"lol I lied, its winter again. Oh I'm dropping to 40 tomorrow, hope you don't mind"

Moral? Don't live along the gulf if you have Pelvic Floor Dysfunction affected by the air pressure.

IC and College, a broken system

Okay so I missed class today. Yes, its a damn cold front. Yes I hurt. No, I'm not going to drive an hour in a car without access to the tub since Soma isn't even helping. We had a quiz today. Problem? This is Prof. A**hole. His syllabus says this:

Assessment:
Random Reading Quizzes (you can’t make a higher grade in the course than the average of your reading quizzes)
Mid Term – 20%
Presentation – 20%
Term Paper – 30%
Final – 30%


I already missed one quiz because of AN EXCUSED ABSENCE DUE TO A DOCTORS APPOINTMENT. He didn't tell me a thing about the quiz! Two weeks later I hear my class mates talking about it! I doubt he just wrote me a 100 for it. So now every time I'm slightly late I have to ask. I usually start with good faith in my instructors. Now, will he let me make this quiz up? Or did I read the entirety of Dangeros Liasons, once spent six hours IN ONE DAY to finish it, for nothing since no matter how well I do on everything else I currently have a 0 F?

Another problem is although the disabilities' director is a nice guy and had a face-to-face chat with this professor about my "unique" (its not) condition, the disability system is still styled for the handicapped and those with learning disabilities, not people with invisible illnesses. If he lets me make up the quiz then he is redeemed in my eyes, but it sure looks suspicious I missed the first two quizzes "conveniently" even if one had been scheduled on the only day I could see my GP. Trust me, school is a lot funner than seeing my GP. For one my clothes stay on.

A Solution to my PFD and IC pain?

I keep saying my spasms are cold by something to do with the air pressure and not the temperature itself.. I have studies backing me up, and a potential cure.

Tl;dr: Hyperbaric oxygen gives long term relief to pain. Hyperbaric deals with air pressure. Its what you have to sit in to not get the bends after SCUBA diving for too long due to the pressure forcing extra nitrogen into your system, not knowing the further to the surface you go the more the gas will expand.. you can see why this is a problem.


Hyperbaric oxygen therapy for painful bladder syndrome/interstitial cystitis resistant to conventional treatments: long-term results of a case series in Japan

Background

There is no confirmed strategy for treating painful bladder syndrome/interstitial cystitis (PBS/IC) with unclear etiology. Therefore, a pilot study was carried out to evaluate the efficacy and safety of hyperbaric oxygen (HBO) therapy in treatment-resistant PBS/IC patients.
Methods

HBO treatment (2.0 ATA for 60 minutes/day × 5 days/week for 2 or 4 weeks) was performed on 11 patients with severe symptoms that had not been improved by previous therapy regimens between December 2004 and July 2009.
Results

Seven of the 11 patients demonstrated persistent improvement in symptoms during the 12 months after HBO treatment. These responders demonstrated a decrease in the pelvic pain scale and urgency scale from 7.7 ± 1.0 and, 6.6 ± 0.9 to 3.4 ± 2.5 and 4.3 ± 2.4 after 12 months, respectively (p < 0.05). The total score of the interstitial cystitis symptom index and 24-hour urinary frequency demonstrated a significant sustained decrease from the baseline. Two responders, who received an additional course of HBO 12 and 13 months after initial treatment, respectively, did not suffer impairment for more than two years. There was one case of transient eustachian tube dysfunction and three cases of reversible exudative otitis media as a consequence of HBO treatment.
Conclusions

HBO is a potent treatment for PBS/IC patients resistant to conventional therapy. It was well tolerated and provided maintained amelioration of pain, urgency and urinary frequency for at least 12 months.
Background

Painful bladder syndrome/interstitial cystitis (PBS/IC) is a collective term covering a range of clinical complaints and pathological findings. Approximately 10-50% of PBS/IC patients demonstrate a classical mucosal ulcer (Hunner's ulcer), and the majority are diagnosed on the basis of positive factors and exclusions derived from the diagnostic criteria of the National Institute of Diabetes and Digestive and Kidney Diseases for IC [1,2]. The etiology of PBS/IC includes a diversity of factors and remains poorly understood. Therefore, appropriate therapy has not been established from clinical evidence [3-5]. Hyperbaric oxygen (HBO) therapy has been reported to be effective in patients with cyclophosphamide-induced hemorrhagic cystitis and chronic radiation cystitis for approximately 20 years [6-9]. The pathological finding of chronic radiation cystitis is similar to PBS/IC, focusing on ischemia and a reduction in bladder capacity due to fibrosis of the bladder wall [10-12]. On the basis of these findings, a pilot study concerning HBO treatment in several PBS/IC patients whose symptoms had not been improved by other conventional treatments was carried out.
Methods

From December 2004 to July 2009, 11 PBS/IC patients whose symptoms were resistant to conventional therapy were treated with HBO therapy. All patients had undergone conventional treatments including oral medication, intrasvesical instillation of heparin and hydrodistension. The ethical review board of our institute approved the study, and informed consent was obtained from all patients. Patients were treated with HBO (2.0 ATA for 60 minutes/day × 5 days/week for two or four weeks) sequentially after previous hydrodistention. After 10 sessions had been performed, patients were assessed and 10 more sessions were performed in some cases; eight patients underwent 10 sessions and three received 20 sessions (Table 1). In the case of patients with severe urgency or incontinence, pads were worn during treatment sessions. The efficacy of HBO treatment for PBS/IC disease was assessed using the score of O'Leary-Sant IC symptom and problem index (ICSI), comprising eight questions with the ranges of 0-5 and 0-4 with regards to pain and voiding symptoms, respectively, the scales of pelvic pain and urgency using a visual analogue scale (VAS) with the range 0-9, bladder capacity, daily voiding frequency, and endoscopic findings. A responder was defined as a patient with an improvement in ≥ 1 fraction among the total score of ICSI, and the scale of pain or urgency on VAS. The population of two related samples could not be assumed to be normally distributed. Therefore, statistical comparisons were performed using the Wilcoxon signed-rank test for changes from the baseline in the aforementioned parameters. P < 0.05 was considered to denote a statistically significant difference.

Table 1. Characteristics of HBO-treated patients and outcome of HBO
Results

The patients comprised 10 females and one male; the mean age was 60.0 years (range 28-79 years). The PBS/IC diseases in these 11 patients included eight cases of ulcerative type and three of non-ulcerative type, according to intravesical endoscopic findings (Table 1). Patients were followed up for a median period of 14 months (range 3-50 months) after HBO therapy. Seven of the 11 patients were classed as responders. Four patients, who demonstrated no remission or short-term improvement, were considered non-responders. Three of four non-responders had non-ulcerative endoscopic findings (Table 1). At the end of the HBO sessions, seven responders demonstrated a significant improvement in symptoms compared to the pre-treatment baseline (p < 0.05), and had sustained amelioration with mild impairment during the following 12 months (Figure 1). After 12 months, the scales concerning pelvic pain and urgency were still decreased from 7.7 ± 1.0 and 6.6 ± 0.9 to 3.4 ± 2.5 and 4.3 ± 2.4, respectively (p < 0.05). The total score of ICSI decreased from 26.7 ± 7.0 to 18.7 ± 7.4 (p < 0.05), and the 24-hour voiding frequency decreased from 22.4 ± 4.0 to 14.6 ± 2.0 (p < 0.05). Two patients (cases one and two) in the responder group, who had received 20 sessions at the time of the initial report, underwent 10 secondary sessions of HBO treatment 13 and 14 months after initial HBO therapy, respectively. The symptoms in these patients remained stable for more than two years. In addition, cystoscopic examination demonstrated marked granulation of the ulcerative lesion (Figure 2) at the end of HBO treatment in all responders. With regards to adverse events, there was transient eustachian tube dysfunction in one case and reversible exudative otitis media in three cases. However, no patients discontinued HBO treatment because of these side effects.

Discussion

The mechanism of action underlying HBO treatment is attributed to hyper-saturation of the plasma with dissolved oxygen. This gives rise to an increased concentration gradient between the circulation and surrounding tissues, allowing oxygen to enter damaged hypoxic urothelial tissues. HBO treatment accelerates growth of healthy granulation in injured tissues via stimulation of leukocytic functions including phagocytosis and production of growth factors related to angiogenesis [13,14]. HBO therapy has been used predominantly for chronic radiation cystitis and cyclophosphamide-induced hemorrhage cystitis in the last 20 years [6-9]. Chronic radiation cystitis is characterized by various histological alterations including sub-mucosal hemorrhage, interstitial fibrosis and smooth muscle fibrosis [10], which correspond to classical PBS/IC with ulcerative lesions [11,15]. Therefore, it was hypothesized that HBO could be an effective treatment for PBS/IC with typical histological changes (glomerulations, Hunner's ulcer and interstitial fibrosis). Seven of 11 cases treated with HBO demonstrated a significant decrease in urinary frequency and pelvic pain and an increase in bladder capacity. Cystoscopic examination revealed the scarring or healing phase of ulcerative lesions in all responders. Furthermore, the positive effects on symptoms were sustained for a minimum of 12 months. Van Ophoven et al. carried out a pilot study concerning HBO in six PBS/IC patients [16]. Our group reported that HBO treatment resulted in a marked improvement of severe PBS/IC symptoms in the initial two cases [17]. In addition, van Ophoven's research group reported the effectiveness of HBO for PBS/IC on the basis of a randomized, double-blind, sham controlled clinical study [18]. This study revealed that the scale of pelvic pain in the HBO treatment group was significantly better than in the sham control group, and the amelioration in responders was sustained 12 months after HBO treatment. The results of our study are almost compatible with their report. Interestingly, secondary HBO treatment prolonged the period of remission in two cases (cases 1, 2). Therefore, it is likely that a repeated course of HBO could accelerate the healing phase of ulcerative PBS/IC disease. Three of the four cases that responded poorly to HBO presented with non-ulcerative PBS/IC. Thus, we speculate that ulcerative lesion with the most evident expression of bladder ischemia may be a predictive factor to result in good response to HBO. HBO therapy was well tolerated by patients; adverse events including visual disturbance, eustachian tube dysfunction and claustrophobia were unusual [19]. Furthermore, the advantage of HBO treatment over conventional therapies such as hydrodistension [15], intravesical instillation of dimethyl-sulfoxide (DMSO) [20] and intravesical submucosal injection of Botulinum toxin type A [21,22] is that it is non-invasive.
Conclusions

The long-term efficacy of HBO treatment in 11 PBS/IC patients resistant to other conservative therapies was investigated. Seven of 11 patients, who underwent 10 or 20 sessions of HBO treatment, demonstrated good amelioration of the evaluated parameters including IC symptom score, scale for pain and urgency, 24-hour urinary frequency and bladder volume, for at least one year. Furthermore, two responders with worsening symptoms experienced prolonged improvement after additional HBO treatment sessions. HBO therapy was well tolerated, with few patients developing transient eustachian tube dysfunction and reversible exudative otitis media.

The present study suggests that HBO could be used for the treatment of PBS/IC patients resistant to various conventional therapies.

Good things come to an end

Had a massive flare today as the air grew chill once again. Thankfully I have the weekend off to deal with it.. or do I? College students don't have days off because we always have to read or some such on days without class. And since I'm the proclaimed "house bitch" (a term of humor used amongst me and my friends for whoever doesn't work and does the house work) that adds on.

There's another blog post I need to write about the doctor is always right mentality.. have some stories.

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.

Life as a Weather Balloon ( cold front flare)

I am the perfect weather balloon. Mother said cold front was coming yesterday, but my body say no, everything's cool.

Late last night I have a terrible spasm that felt like a menstrual cramp, only in the bladder, and that HURTS.

I wake up today in pain... and wouldn't ya know, the cold front was a day late.



------

As I stated earlier the best coping strategy is to distract yourself. There are some flares you can control such as stress or food flares, but then there are others when you can do nothing like a flare caused by the weather. The only thing you can is take all your pain meds, tether yourself to a heating pad, and then distract yourself. Unlike the advice my mom gives me, sleeping does not work if you are in pain. Works great if you have the flu, doesn't work if you have IC unless there's a drip of morphine going into you.. not to mention holding in urine too long while sleeping all day is just going to make it feel worse when you wake up.

That said, I was pretty happy to open my present and find Skyrim. I was like, cool, I'll go play it now! I remember the soothing music from its predecessor Oblivion helped me stay relaxed a lot.

Well, Skyrim had DRM added to it. For non-gamers, that means that you must have internet connection. For someone living with a 10gig cap of bandwidth, and when the DRM makes you DOWNLOAD the game despite the fact that you BOUGHT the CD, its going to cost a lot of time and money. So I started off mad.

Then about 14 minutes into the game it froze and locked up. I run a 64bit system which needs 4gigs of ram. Skyrim was made only to use 2gigs. So, the memory is getting clogged. Someone fixed this, but with the DRM patch that was forced on me with the CD it broke the fix. So I am the unhappy owner of a game that crashes constantly.

Oddly, I find that anger helps my symptoms. Probably because it distracts me. But I did sent corporate a nasty email.

As for the flare itself it's pretty nasty.. despite my drug-lord level of pain pills, its just helping me ignore the pain rather than get rid of it like it usually does. There's really nothing else I can do. It's feeling pretty bad now. When I'm in this state I don't want to talk to other people or play with them. I usually just browse forums, blogs, or single players games. Guess I'll save every 2 minutes in Skyrim.

Christmas

Christmas went pretty well. The weather stabled to cold and gave me some relief. I'm still worse off than I was in summer, but overall am doing better than last year. I only opened one present as stepfather does not return from offshore until tomorrow. Present was Riot Points from my boyfriend, which is online currency for a game I play.

If you have IC, you HAVE to have something to distract yourself with.. mine is raging at people on my team that only speak Spanish and die a lot. Plus I do generally have fun.

Skyrim is sitting under the tree.. I'll get that tomorrow.. Melee Kahjiit it is.

I cooked some good gumbo.




I'm very diet sensitive, of course. Only things that went it was oregano, fresh garlic cloves, basil, crab meat, and shrimp meat. My mom did buy the ingredients for it, but I split it half-and half with her as repayment. The meat was bought at a local stand, so no preservatives. The kicker? The woman running it has IC too. This is a small town I'm in. And I now know of two women with IC. Evidently hers is mild and only hurts if she drinks soda. If course, my mother compared me to her and asked why is she doing so much better than me.

Earlier we got in a fight again. I wouldn't say fight. I was just submissive. She complained how I never clean house and I'm always playing on "that damn computer."

Well. The computer is my only access to the outside world and.. I do a lot more research than reading... that aside, I do try to keep up with things, but in the mornings of winter I MUST have an hour's time to take pain meds, sit on a heating pad, and relax, hopefully with breakfast.. after that I may continue to hurt, or I may not. At which point I'll either tackle some house work or remain on the heating pad.

The main problem with my mom is that even when I do clean, it only brings more complaints. I do the dishes, why didn't I clean behind the toaster? (Because I don't think to move the toaster every day to see how nasty it is.. I can't even eat anything that comes out of it.)

Towels is the main argument. I do towels daily, but there's always a pile on the floor despite having stocks in the bathroom for use. This is because I must urinate in the tub with warm water spraying at the pelvis to control spasms. Since I'm on the pill that turns my urine blue, this leads to blue stains in the tub. She complains constantly about this as well. I do spray bleach in it about once every two days, but it's my only option. I tell her I'm sorry. Because of this I use a towel to dry off before leaving the bathroom. We don't have actual heating in the house, just electric heaters where we need them. This doesn't include the hall. It is very cold, and bad for spasms, so I often will leave my towel on the floor until I come back out for something else after being fully dried and re-warmed. She complains about this and doesn't understand why I leave towels on the floor.

Thing is, I just don't pick it up fast enough. When she leaves on vacation everything gets done, just as it does now, but everything must be done on her time and not on my bladder's time.

Its 7 A.M. now. I'm tired. I want to sleep. But my bladder controls my schedule. I must complete this water bottle or else I will awaken with burning from condensed urine in an already irritated bladder.

I would really like to see a therapist about all this. The pain, dealing with family who can't understand, and worries about my future. Sadly, this is a cache 22. I'm chronically ill with pain and am very hesitant to leave the house. The therapist is not at my house, and if I call in absent on the day of the appointment enough times they can drop me. Worst thing about IC is its unpredictable. Symptoms change every four hours for me, or in other words, every time I urinate. There's no such thing as web-therapists that I know of.. or at least, a therapist that'll meet me in person and maybe do e-mail or chat sessions with me on bad days. Do they do this? I don't know.

And yet again, this costs money.. the final thing my mom was complaining about. I live off financial aid from my school. I don't get paid until February. Right now my boyfriend is paying for most of everything. I can't reimburse my mom for what she spent on my medications. Per month, with good insurance, I'd say its about $50.. and I'm broke.

The way she words it is that I should be doing "something" for money. But who will hire a person that can only work maybe 4 to 6 hours a day on good days and be absent many days for winter? During the summer I could perhaps find a seasonal job.. but now I'm fairly useless in most ways. Only thing keeping me sane is my boyfriend who gets it.

Feeling like I'm being blamed for my illness, or lying about the pain, due to the words of close family members hurt a lot. ICers are 3-5 times more likely to commit suicide than healthy people. They say the main reason is from the pain, which I can see, but also definitely when there's little family support. Mother does support me, but she makes sure I know she thinks I'm playing my pain up more than what it is.

According to her sick people in pain should be in bed sleeping. My pain is near constant. She's only suffered from labor and the flu. I can't sleep for my entire life. I raise this point and she, in a round-about-way, accuses me of just being a hypochondriac since I'm healthy enough to sit in a chair (on my heating pad) and play those "damn" games.

I don't know about anyone else..but sleep is impossible if you're in pain. I know a lot of ICers hardly sleep because of this.

I could very likely get my uro to write her a note, but really, she won't even read the most basic information on IC despite how I present it to her. I really want to move out but just can't.

In the end I was near tears. She says how she must work in the rain and deal with abusive bosses... but I'd trade her my life for hers. While her job is shit, she owns a motorcycle and goes on many adventures with my stepdad when she's off. They just went to Georgia. They always ride in bike rallies. They have plans to go to the Bahamas.

I'm too afraid to leave my property much less state. She attends rock concerts and parties. I stay at home sorta high on Soma and click a mouse at people because it doesn't require walking or pelvic motion of anytime.

Why I Hate Everyone

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.

The Winter Flare

I don't know how much the temperature dropped. All I know is that last night things were warm enough to have the air conditioner on for awhile. I wake up and notice my boyfriend has out the heat on full blast, and this is a guy who finds 70 too hot.

I do my daily chores and find it it feels kinda chilly. Usually I get a 4 hour break from pain right after waking up. Today wasn't like that. Pain and burning from the start, I took all pain killers and my eyes are terribly dilated but I still hurt.

My Grandmother just died. Original plans was wake on tomorrow, which I could attend. Now they've moved everything to Tuesday. I have school on Tuesday. The two events happen at different times, but I'm flaring and I only have a 4 hour break. I must choose. Usually I'd pick the funeral, but it is the week before finals where teachers tend to give study guides to the "good" students who came to class. I need that guide. I'll email her and ask for notes and everything.

If that fails then I get to look like a worthless, selfish member of the family because no one understand the type of pain this disease causes.

This related to the spoon theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/). I don't have enough spoons for both. I told my mom this and she got very mad and disappointed to the point of making me cry. I DON'T WANT TO BE LIKE THIS. I WANT TO BE HEALTHY. It's not my fault, but that's never the message conveyed from her.

Is it working?

I'm not feeling great at the moment, but I wouldn't say I'm flaring. In fact I'm surprised I haven't had to knock myself out yet. We had a sudden cold front and I went all day without going to the bathroom due to very bad timing and school. I expected horrible retribution by my bladder, but it never came.

Is the cyclosporine already working? I sure hope so. I like this "living life" thing and hope it sticks around.