On my second pack of cyclosporine. The second blood test hurt a little because the lab had to use a vein that I wasn't focused on when putting the lidocaine on. Some was on it, but not the glob it needed. She's a nice lady and it was fast. Now I only need bloodwork done once a month.
November is usually my worst for pain. In Louisiana the weather changes drastically. It'll go from 80 to 30 back to 70 and so on, really messing with a lot of people
s chronic problems. My diabetic friend's pancreas started spasming bad which we also assume is the cause.
Nov. 15th of last year was when my huge IC flare hit and never went away. This is what lead to my heavy use of pain medications because before that I only needed some benedryl and the diet and I'm not sort what happened other than the weather completely destroyed me.
So far I haven't missed classes. This week is final paper week so I'm busy trying to get through them in case a really bad flare does hit.
I hope to God that this is the cyclosporine helping me and I will be able to finish school, only to take more webcourses so I can be a transcriber since it appears I will be too disabled for a regular job for a long time. What I really want is to teach, but that won't happen with IC.
Onto another subject: I have a great fear of doctors since my mom never advocated for me. She'd pick one place and stay with it regardless of my feelings. I was born with a lazy eye. First doctor tried glasses to strain my muscles to see if that worked, second used an eye patch to force me to use that eye, and finally they just did surgery. All it really did was make me look "normal" but my eye function is useless except for peripheral vision. It was a very painful and traumatic event for me. Everyone of them used dialation eyedrops which felt like acid to me. To this day I can't go to an eye doctor, or even have someone try to put on makeup around my eyes without me squeezing them shut. I can't have the glaucoma test, because my eyes close without my control.
Another incident was the foreshadowing of my IC. In kindergarden one day I used the potty and found I felt like I had to pee very badly even though I just peed but nothing would come out, so I went to my teacher crying and she called my mom. It was expected to be an UTI, but nothing showed so the doctor wanted a physical exam. The problem is that I am female, he was male, and I was always told it was okay for me to not let anyone touch my private places if I wasn't okay with it.
I wasn't okay with it. I wanted a female doctor. I cried and pleaded that I didn't want this scary man (who was also responsible for my vaccinations, making him all the more scary) to touch my private parts because they were private. Instead of getting a female, they held me down and he touched me all down there and put this nasty cream all over the place in case it was a yeast infection. It burned and didn't help my symptoms.
Thankfully I felt better after a few weeks and nothing happened until I was a bit older, old enough to NOT tell my mom about this since she never advocated for me. I used the azo pills and the pain would go away. It happened about once every 2 months after going to the bathroom, they were spasms but I didn't know. I just knew not to say too much or bad things would happen to me against my will.
I just know I'm very thankful that the full blown IC waited until I was an adult. The diagnostic methods back then were even more barbaric than they are now and there was no way I could have mentally handled a scope going up me without GA. I'm messed up as it is, but that would have blown me over the edge, and so I am for advocating kids right to their own preference for healthcare. No one doctor does one thing the same as others. Parents must shop around for their kids, otherwise PTSD will develop. The perfect doctor is out there for everyone, but most people don't care if a certain procedure would hurt a child way more than adult who actually consented to it. Forceful penetration of the urethra or vagina, even for medical reasons on an unwilling child is rape. There is just no other definition for it.
I am across this site and it pissed me off so much http://patientmodesty.org/modesty.aspx
Pretty much it shoes the abuse hospitals will put you through if you don't fight. There's nothing silly about a rape victim, or even just a very modest girl, refusing a man for a pelvic exam. Routine Pelvic exams in general sound like a sack of crap to me. As an IC patient, I need it done, but for girls just trying to get birth control it involves no patient consent because there is no choice. It's a carrot on a stick, and sickeningly most women are okay with this. "Better safe than sorry." It is, unless you have severe emotional issues towards such things. Only you know your sexual history and risks of cancer. Sometimes they even force virgins into it, which is humiliating and often painful, and akin to a first sexual experience if the hymen breaks except its not with someone you trust or love, just a cold sterile thing force into you to receive the pill so you won't get pregnant we you try to "re-lose" your virginity. Too bad someone else already had their fingers up you. Thankfully at the age of 16 I knew what was going to happen if I was placed on the pill for acne, especially since I was dating, but I was also still a virgin. My mom pressured the doctor into putting me on the pill and I flipped out to the point that he forced her out the room. Me and him decided that I shouldn't be on the pill. Story closed, and I for the first time in my life advocated my bodily autonomy.
A few days ago I came across a post of a mother who's 3 year old daughter needed a VCUG done. This is where they put in a catheter and fill it with idiodine so they can x-ray to see if there's kidney reflux. Problem is you have to be awake, because you have to piss all over yourself after the dye is put in so everyone in the room can stare at you while you pee yourself. Now imagine going through this as a 3 year old, with no pain killers except maybe lidocaine, which works okay with small needle procedures, but must painfully be injected into the urethra in the first place and won't stop the horrible sensation of the catheter ripping past the child's spincter because it is a CHILD. Children cannot follow the order to relax to let it pass through. Even I couldn't. The cath burns upon entering, causing clenching, and a child will fight it. I've read accounts of adults who had it done as children and they can't even get pap-smears anymore and would rather die than have someone touch that area again.. the same goes with the IC community. I myself was very close to suicide until I found the doctor who diagnosed based off symptoms rather than the scope, which, they will not put you out for.
It's truly disgusting how patients are treated, but so many give in and even berate others for "walking out".
Wiki on VCUG: http://en.wikipedia.org/wiki/Voiding_cystourethrogram
It's a very impersonal explanation and won't prepare the patient for the pain and humiliation that comes with it. Sadly most recipients are children. Children who are not given proper sedation and can't understand why this is happening to them and why their mothers won't save them.
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Updated 2018: There is now a community on Reddit for those of us with medical PTSD. It was a long time coming.. so few places to find support. Those of you who find this blog, please continue posting here and cross-post there for support.
https://www.reddit.com/r/MedicalPTSD/
