Back from New Orleans

I'm back from seeing my uro, everything seems well and setup in case of emergencies. However, I swear my GPS is trying to get me killed.

"Turn right."

There is a wall there, GPS.

"Turn left"

I'm on a bridge, GPS.

I did want to go to the zoo since I don't get out much, but though the ticket prices were good the parking prices were not. Have to love those extra charges.. so we get to the ferry, see the parking fee, and we just turn around. My boyfriend wanted to get home before sunset so he could fix his car for tomorrow so he could get to work and I to school. So far the nachos have not killed me. I am eating some rice with salt in it now. So far so good. I also ate pancakes at IHOP. I'm going to slowly do this until I find my stopping point. I'm sure this means I can have potatoes again. I missed potatoes so much.

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.

Mardi Gras

The holiday all students look forward too! I'm drowning in midterms and professors who don't know how to use technology, but today I took the day off to just cook. IC safe gumbo (safe homemade reaux (safe flour browned in microwave or oven), a HUGE pot, a lot of water, and chicken, shrimp, and crawfish with rice. For others of the household I made unsafe, very spicy red beans and rice with sausage and cornbread muffins, though the muffins seemed okay... Jiffy brand.


It was delicious. Even without seasoning. You can still eat well without worry. Just make sure the meats don't have anything else in it BUT the meat.

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

For science!

I broke my diet. Every once in awhile you need to try to see if your food tolerance has increased any. I ate just a little, so I'm not expecting anything awful. It was regular fried rice from an Asian fast food joint. Likely has MSG in it and onions.. and some spice I couldn't name but had properties of black pepper. If you don't hear from me in two days then things went well. If I reply, it'll be about blood coming out of places where blood shouldn't come from.

For $5000 evidently you can have your own personal hyperbaric chamber!

I'd equate it to a vampire and his coffin. One of the ads at the bottom was advertising one for that price. With my insurance co-pay (IF they pay) it'd be $80 a trip. Could just get a loan, freelance write hardcore, and keep one in my room so I can totally be a vampire with a coffin and all that.

According to them:

Elimination of intravascular and tissue gas bubbles, which trigger coagulopathy and other mechanisms in the complex diving disorder, decompression sickness.

Restoration of CNS perfusion by compression of intravascular gas emboli in pulmonary over-pressure diving accidents or iatrogenic intravascular gas embolism.

Increased partial pressure of oxygen (tension) which increases the amount of oxygen dissolved in plasma. This can increase oxygen levels to approximately 450 mmHg at the tissue level.

The effects of increased oxygen tensions are seen in a variety of different situations:

Vasoconstriction and reduction of edema in the area of trauma. Oxygen tension may be 10 to 20 times that achieved by normobaric oxygen breathing.

Rapid dissociation of carbon monoxide molecules from hemoglobin and cytochrome A3 oxidase (23 minutes at 3 ATA) as well as greatly improved delivery of dissolved oxygen in the plasma.

Stimulation of growth and occurrence of fibroblasts, osteoclasts and granulocytes, resulting in wound healing. The resulting angiogenesis enhances healing skin grafts, select problem wounds and compromised flaps.

Cessation of alpha toxin production by the clostridial organisms in gas gangrene.

I'm still not sure how this can help people with IC but the research tells me its the next way to go.. and if they want to charge an arm and a leg then I can stuff this thing somewhere after a large loan (only after discovering if the therapy is the cure for me though).

How to select a pet if you have IC?

There are things to consider when selecting a pet when you have IC. The first thing to consider before anything else is allergies. On the ICN we put our symptoms and meds, and one of the users outs "Fur Therapy" with a picture of her dog under the med section. Fur therapy is a pretty great thing, especially if your insurance will pay to get a dog trained as a helper. I was trying to train our German Shepard to bring towels to the washer so I wouldn't have to walk through the coldest part of the house, but he would just take it randomly drag it somewhere upfront. I guess if it was horseshoes it'd kinda count.

Living single, or with only a spouse would make dog ownership hard if you have particularly really bad flares. You'd have to judge on the regularity of them and how bad they are. Would you be able to let you dog outside every 3 to 4 hours? Having a dog outside on a chain is useless as a therapy animal, and when you want to bring him inside he'll surely need a bath first. My family includes 3 other people, and the dogs arne't really "mine" and stay upfront with my parents. They're also terrified of the bathroom for obvious reasons... b-a-t-h. So they are unhappy to keep me company in a bad flare.

What about a cat? My cat is a bathroom lurker, likely because the dogs won't go there. Problem is I'm allergic to cats. And she's extra hairy. And she sheds so much our hallways look like the old west with tumble weeds, except its cat fur. She was a foster we saved, and this was far before I had IC. Sadly nowdays I have to kick her out the bathroom or else she'll spend the whole time meowing and rubbing my legs and making me itchy on top of everything else.

What about reptiles? They have some friendly reptiles like bearded dragons, but they cost a lot to keep up with. They'd likely stay in the bathroom with you. Snakes wouldn't really do enough to keep you occupied, though they're real easy and cheap to take care of, and turtles are too skittish and need weekly water changes, but friendly lizards are always an options if you can pay and research on how often cage cleanings are needed.

What about rodents? Rats are the best pets I've ever had. They're mini-dogs. When mine escaped at night I'd wake up with them licking my face. Yes, rather than "act like a rodent and chew everything", rats would rather climb into bed with you. I didn't choose a rat this time because they need weekly cage cleanings.

Hamsters: Hamsters are evil. The commit mass suicide, will bite, and I've never heard a positive story.

Rabbits: They can be litter box trained, but generally still poop around the house. The poop a lot, so you need to clean their cage often if you keep them in one or play find the poop, but eventually I think they can be trained to poop in a litter box too. Rabbits don't like to snuggle though.

Chinchillas: They pee. A lot. You need to change their cage 3 times a weak.

Gerbils: This was my pick. You have to change their cage.. once a month! Get them a 10 gallon aquarium with carefesh bedding and its like watching an ant farm with how they tunnel. They are trainable to ride in your pocket, but take much more work to be friendly that a rat would, but are not evil like gerbils. Mine already knows to like the hand.


I had an awful flare last night. No amount of meds or hot baths would help. I stayed 5 hours in the bathroom with nothing to do so I asked my boyfriend to bring the gerbils in (I had already gerbil proofed it, just don't leave anything on the ground they can chew on). They kept my attention and watching them play made me feel happy. They also are curious about feet but generally take the time to just run laps around the room chasing each other.

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.

New pad may help ease IC/Menstrual pain

Emily, 25, Oregon - "I have very painful periods and these pads definitely relieved some pain and discomfort during the day. I've had the symptoms of IC since I was probably a young child and could never get relief. I was finally diagnosed in 2008. I am impressed with the packaging; didn't worry about dirt or bacteria. My energy was so much more positive and I felt comfortable and secure wearing the pads. I wear the pantiliners everyday. I'm so grateful to my boyfriend for encouraging me to order these pads!!!

Stef, 35, Washington - "I have tried the day pads and LOVE them. I will definitely be ordering some. They are so comfortable. I suffer from pelvic discomfort and my vaginal tissues are so sensitive."

VJ, 40, CA - "I have found using Empower pads have helped lessen the pain that I experienced with severe cramps when my period would arrive. Without Empower pads I would be in my home and not out living and enjoying life to the fullest. Thank you for creating Empower pads! I really feel that they are the best feminine hygiene product on the market."

Empower Pads are a breakthrough in feminine hygiene support. Each non-chlorinated pad has a bio-energetic tourmaline strip for cramp relief, a soft top layer, a breathable polymer backing, and superior absorbency. Tourmaline has become a focus of research at universities and research centers worldwide because of its health benefits, such as improving circulation, relieving stress and increasing mental alertness. Anions increase oxygen, thus inhibiting the growth and multiplication of anaerobic bacteria. For women, this means less unpleasant odors and less incidence of infection.

Common DO's & DON'T's when using sanitary napkins

1. Choose a pad that is made from light, breathable, hypoallergenic materials. Allergens and materials that do not permit airflow in and out often cause skin irritation.
2. Consider the style and size. Try to choose a pad that is appropriate for your body size and type.
3. Look for pad with a high absorption rate that also has the ability to lock in moisture.
4. Always wash your hands before handling pads to avoid bacterial contamination.
5. Do not leave sanitary pads in the bathroom for long periods of time. Moisture may seep into the pad and lead to the growth and multiplication of fungi or bacteria.
6. Avoid scented pads. Perfumes, scents and some chemicals found in pads are well know to cause skin sensitivity and burning, especially for women with sensitive skin and/or vulvodynia. If odor is an issue, change your pads more frequently

.

Attribution
ICN: http://www.ic-network.com/forum/showthread.php?t=73235

Injustice

The biggest injustice is that the layman cannot do medical research for himself because he does not have access to the scholarly journals doctors do due to their price, and so he must be blindly lead in good faith by what his doctors say.

We cannot have patient oriented healthcare like this.

A year older and feasting

My birthday was on the third and I turned 24. Today I'm eating waffles and drinking apple cider for the first time in 3 years. My local store finally got preservative free waffles and a brand of apple cider without added vitamin C (painful for IC patients) or anything else. The waffles do have less than 2% butter milk though which may be a problem, and fruit juice is acidic regardless. I'll drink some milk later to counteract.

Update

I do have something important I still want to write about, but no time now. The weather's warmed and I've been attended school daily. Worried about getting a job though. Holding a temp summer job won't cut it. Trying to do a home IT business but my parents don't like the idea of having strangers around but not sure what else I can do from home but write.