Taking a brief break from my pelvic pain writing, I’d like to rant for a while about a Christmas song I loath and I must do it now because the friggin’ song kept playing ad nauseum in my head two days ago and I promised myself that I would write about my thoughts on this song if only it would stop it’s endless loop through my brain. So here I am, trying to maintain that promise, even if it is a day later than I said I would write this.
In case you are curious, the song I absolutely loath is called, “Baby Its Cold Outside”. Apparently this song was written as a duet between Frank Loesser (is that pronounced Loser?) and his wife in 1944 and played at a housewarming party (Source: http://www.christmas-lyrics.org/baby-its-cold-outside-lyrics-song.html). I don’t understand the appeal of the song then and I certainly don’t understand it now!
Last year I used to refer to this song, in as loud a voice as possible whenever I heard it played in a public lace, as “The Christmas Rape Song.” But this year, after closer examination of the lyrics, I have come to the conclusion that there is no evidence of rape or any other form of sexual assault taking place within the song.
Therefore, this year I had to change the title to “The Christmas Coercion Song” because every friggin’ version of this song I’ve ever heard is all about a “man” trying to convince a woman to stay at his place when she repeatedly tells him that she must leave. I do not see any other way of viewing this song as anything other than coercion and as an absolutely terrible message to be putting out there…that it is ok for a “man” (or anyone for that matter) to hound, pressure, coerce, manipulate or in any other way try to force someone to comply with your desires when she or he has made it clear that they are uncomfortable with the situation.
Depending upon which version of the song you listen to, the woman says at least once to repeatedly that she needs to leave and her answer to the guy’s request for her to stay is NO. My least favorite version of this song features Rod Stewart (as if that weren't bad enough!) and Dolly Parton where she concludes the song by saying "You sure know how to wear a girl down, don't you? Okay Okay..." (http://www.metrolyrics.com/baby-its-cold-outside-duet-with-dolly-parton-lyrics-rod-stewart.html).
Why the hell, in the 21st century, when we try to teach our kids that “no means no” and rape is an unacceptable crime, is this song still being played? Even if the guy never rapes or assaults her, he is still using his powers of persuasion, as well as alcohol, compliments, flat out refusals to help her get home and guilt trips (“How can you do this thing to me?” “…my lifelong sorrow if you caught pneumonia and died…”), in order to have his way, regardless of how she feels.
Throughout the song the woman talks about how her family would react to her staying so long, possibly overnight, at this “man’s” place and all he can do is think about his dick, her looks and his pride. He, apparently, has nothing to worry about except for whether or not she complies with his demands for her to stay.
Wow! That really puts me in the Christmas spirit like nothing else does!
Every year I become enraged when this song is on and I let everyone in earshot know how I feel about it, but until now, I’ve never done more than loudly complain about the mixed messages in the song and how I don’t understand how people can listen to this.
My lover, who has heard my rant for years, tells me people don’t listen to the lyrics and analyze them like I do, that is why they aren’t pissed off about it. According to his view, at best people tend to hear the chorus, “Baby it’s cold outside” and some crap about drinks and a fire and how beautiful she looks and that is about all the thought they give the song...if it even gets that much attention from harried shoppers, pissed off drivers stuck in holiday traffic and all the other holiday situations and mayhem which might cause someone not to pay attention to the music being played.
And yet I can’t help but find it interesting that in “the Valley” where I live, the local news paper ran an editorial debate over the lyrics of the Insane Clown Posse. Now, I haven’t heard their songs in years and I never liked what I heard and I’m certainly not a fan of “Imma Kill U” (the lyrics of which I just read a moment ago). (http://www.metrolyrics.com/imma-kill-u-lyrics-insane-clown-posse.html).
Even I recognize that there is a huge difference between talking about killing someone (even if that someone is a child molester as in the Insane Clown Posse song) and trying to coerce someone into doing what you want, but both songs send strong (and in my opinion) terrible messages to people and the song, “Baby Its Cold Outside” is heard by far more people, even if only at Christmas time, than any song by the Clown people, especially since the Clowns aren't played in most public places.
I also think that it is crap that, at least in “the Valley”, some people are trying to link a horrific murder to the “Imma Kill U” song and yet I’ve never heard one person, ever, link ruining a woman’s reputation (“My sister will be suspicious”…”My brother will be there at the door…”) if she stays to long at a guys house, or worse yet, is sexually assaulted, to this “cheerful” Christmas song.
Can anyone explain to me why that is? Why is it ok to gloss over the coercion simply because one hears, and maybe even agrees with the fact that it is cold outside? Can anyone offer me a plausible alternative on how to interpret this song? Because I can’t think of any other way to view it or excuse it and I can’t seem to not be pissed off each year when I hear this song.
The older my five nephews get, the more I wonder about the impact of songs like this, especially songs that are presented as cheerful, holiday tradition songs, versus songs that are clearly ok to vilify, even if we are condemning them without fully listening to the lyrics. And I wonder what kind of impact, if even a subtle one, it will have on them as they begin to explore sexual relationships and form opinions of their own.
Thursday, December 31, 2009
Thursday, December 17, 2009
My Angry Bladder, Part One
Well, I’ve procrastinated writing anything else after my last posting, because what do you follow up your blessings with? I couldn’t think of anything that sounded as great as what I am thankful for, but today by bladder is in spasm and it really hurts, so I’m going to write about that (lucky you, my dear reader!).
Interstitial Cystitis, which is one of my many diagnoses, means that I have one very angry bladder. While no one knows exactly what causes this problem, or the best way to treat it (I’m sooo comforted my these realities!), the current theory is that IC is a wearing down, or eroding of the bladder’s protective lining over time. This possibly allows the very acidic urine to come in contact with or aggravate surrounding nerves which are used to being shielded from this abuse by the bladder’s protective liner. The nerve aggravation is believed to cause incredible irritation to the bladder and possibly surrounding areas, leaving the IC patient in sometimes excruciating pain, with frequent and incredibly strong urges to urinate. Some IC patients urinate over 50 times a day!! Prior to treatment, I was probably averaging 20 times a day, which really interferes with one’s life since I am peeing almost once an hour every day! Right now, I average 13-15 times a day, which is still far higher than the normal bladder’s voiding 5-7 times a day.
While Dr. E doesn’t know how this problem began for me, I strongly suspect that it has roots in my childhood. When I was a kid, we had two bathrooms, one in my parent’s room and one downstairs. I learned very quickly that it was a horrible idea to wake my dad up and it was a long, scary walk downstairs at night. This meant I often held my need to pee all night, or all night until I wet the bed (which I did until an age far older than I care to admit). This stress on my bladder, along with other traumas and life events, as well as the endless mantras to “hold it just a little bit longer” and road trips where I forced myself to hold my urine for hours longer than I should have, are probably strong contenders in the reasons why I now have IC, and may possibly have it for the rest of my life.
In Dr. E.’s opinion, it was most important and most practical to start treating my Interstitial Cystitis right away since he could treat me in his office at a reduced rate while we waited to see if I would be able to afford any other forms of medicine and physical therapy. He also thought this was the most important issue to address because I have likely had untreated bladder problems since I was at least 5 years young and 27 years of an untreated problem is a tremendously long time to be ignored!
I chose today to write about this because apparently my bladder is in currently in spasm, the nurse may have used another word for what is happening, but that is what my bladder feels like to me! The current cause of the bladder spasms, which started three days ago, are probably the weekly bladder instillations I’ve been getting since November 4th.
If you’ve never had a bladder instillation, or treatment as they call them at my mom’s place, you are really missing out in life! In addition to all the medication I take, once a week, for at least nine weeks, I get my bladder pumped full of medicine too. Now, there are only a few ways to get medicine into one’s bladder, and I do two of those ways, one of which is by orally taking medication. The other way of getting medicine into my bladder is far less pleasant!
A bladder instillation, in Dr. E’s office consists of meeting with a nurse once a week. At the beginning of my appointment she asks me how I am doing, triages any problems that I am having and adjusts, changes or adds any medications as needed and tries to answer my plethora of questions. Either before or after this discussion, I go to the bathroom in an attempt to empty my bladder, even though I’ve already peed less than 40 minutes ago before I left my house. At some point the nurse leaves the room and I get half naked from the waist down. As I await her return, I try to make myself comfortable as I sit cold and cross-legged on the examining table with the giant scratchy tissue looking thing covering my nude bits.
When the nurse comes back, I maneuver my body down the table and put my feet in the stirrups as she sits on a low stool with her face between my very unshaven legs. I don’t really think this is a comfortable thing for either one of us, no matter how many times she’s done this. It certainly isn’t comfortable for me, no matter how many times I do this! Then, while talking about something or other, she will either use a giant Q-tip to lightly examine my latest problem (the Lichen Schlerosis , the tear in my anus, the Vestibulitis…whatever) or she will gently apply Lidocaine to my urethra (can you figure out where this is going?). The Lidocaine stings and burns in an attempt to numb my urethra for the child size catheter she is about to insert.
Ever have anything inserted into your urethra? I firmly consider that orifice to be an “exit only” hole, and this procedure sure as hell violates that rule!
When “Susan” is my nurse, she is very gentle as she guides the catheter through the bumps and ridges and whatever else is inside my urethra. When Dr. E. does it (which thank god was only once!) he was not nearly as patient or gentle! Once the catheter is in place, my bladder spews forth more urine, even though I swear I just emptied it, and it is caught in a pink plastic something or other. I never actually see this part since I am covered with a giant tissue, but the first time it happened I was mortified! I thought, not very rationally, that I was peeing in my nurse’s face! When she didn’t say anything about her golden shower, I was left trying to figure out why the hell I still was peeing when I literally went to the bathroom 5 minutes ago! When I finally got up the courage to ask, Susan told me I, A) am not peeing on her face or any other body part and B) it is because my bladder and the pelvic floor muscles supporting my bladder are, and have been, in spasm for so long it is just about impossible for me to truly empty my bladder right now. Evidently the catheter which is scorching holes in my urethra is going to help me fully empty my bladder once a week.
After my bladder is drained, it is filled with a mixture of Elmiron pre-dissolved in (I believe) bi sodium carbonate, water and something else I always forget. Several treatments later, I no longer feel the medicine being pushed through a big needle looking thing into the catheter and finally deep into my bladder, but the catheter still burns and its insertion always makes me feel a terrible urge to urinate (despite the fact that I just did before I got half naked and that my bladder was drained even further when the catheter was initially inserted! How much pee can one person have?) When I’m good and full, of what, realistically is probably two or three inches of liquid, even if it sometimes feels like 40 gallons, the catheter is withdrawn. The procedure is over, and unless I’ve asked a few questions or we have a good conversation going, the entire process takes fewer than five minutes. Sometimes we talk while Susan’s face is still between my hairy legs. Sometimes I scoot back on the table and have the conversation in a more “normal” position. Eventually Susan leaves the room, I get dressed and she generally comes back with whatever new ‘scrips I need or to follow-up with any other questions I might have. She is a brave woman to come back into the room, as I always have more questions to ask!
Finally, I am given instructions to try my best not to urinate for an hour and a half and I am free to go (after I pay, of course!). An hour and a friggin’ half??!! To someone with IC, that is almost akin to asking me to never pee again! The only times I ever go that long without peeing are if I’m asleep (and up until recently I was lucky to sleep more than two hours without needing to get up and pee) or if I deliberately dehydrate myself because I know I am going out and I don’t know where the bathrooms are, if there are any or, if I try mightily to ignore the increasing pressure and painful need to pee, like on long road trips to Massachusetts. Telling me not to pee for an hour and a half is torture sometimes. I might ordinarily be able to hold it that long if no one told me not to pee, but once that edict is given, my bladder pounds at the door of mercy, begging for a bathroom, threatening to saturate my clothes and publicly embarrass me if I don’t release my urine right this very minute!
Interstitial Cystitis, which is one of my many diagnoses, means that I have one very angry bladder. While no one knows exactly what causes this problem, or the best way to treat it (I’m sooo comforted my these realities!), the current theory is that IC is a wearing down, or eroding of the bladder’s protective lining over time. This possibly allows the very acidic urine to come in contact with or aggravate surrounding nerves which are used to being shielded from this abuse by the bladder’s protective liner. The nerve aggravation is believed to cause incredible irritation to the bladder and possibly surrounding areas, leaving the IC patient in sometimes excruciating pain, with frequent and incredibly strong urges to urinate. Some IC patients urinate over 50 times a day!! Prior to treatment, I was probably averaging 20 times a day, which really interferes with one’s life since I am peeing almost once an hour every day! Right now, I average 13-15 times a day, which is still far higher than the normal bladder’s voiding 5-7 times a day.
While Dr. E doesn’t know how this problem began for me, I strongly suspect that it has roots in my childhood. When I was a kid, we had two bathrooms, one in my parent’s room and one downstairs. I learned very quickly that it was a horrible idea to wake my dad up and it was a long, scary walk downstairs at night. This meant I often held my need to pee all night, or all night until I wet the bed (which I did until an age far older than I care to admit). This stress on my bladder, along with other traumas and life events, as well as the endless mantras to “hold it just a little bit longer” and road trips where I forced myself to hold my urine for hours longer than I should have, are probably strong contenders in the reasons why I now have IC, and may possibly have it for the rest of my life.
In Dr. E.’s opinion, it was most important and most practical to start treating my Interstitial Cystitis right away since he could treat me in his office at a reduced rate while we waited to see if I would be able to afford any other forms of medicine and physical therapy. He also thought this was the most important issue to address because I have likely had untreated bladder problems since I was at least 5 years young and 27 years of an untreated problem is a tremendously long time to be ignored!
I chose today to write about this because apparently my bladder is in currently in spasm, the nurse may have used another word for what is happening, but that is what my bladder feels like to me! The current cause of the bladder spasms, which started three days ago, are probably the weekly bladder instillations I’ve been getting since November 4th.
If you’ve never had a bladder instillation, or treatment as they call them at my mom’s place, you are really missing out in life! In addition to all the medication I take, once a week, for at least nine weeks, I get my bladder pumped full of medicine too. Now, there are only a few ways to get medicine into one’s bladder, and I do two of those ways, one of which is by orally taking medication. The other way of getting medicine into my bladder is far less pleasant!
A bladder instillation, in Dr. E’s office consists of meeting with a nurse once a week. At the beginning of my appointment she asks me how I am doing, triages any problems that I am having and adjusts, changes or adds any medications as needed and tries to answer my plethora of questions. Either before or after this discussion, I go to the bathroom in an attempt to empty my bladder, even though I’ve already peed less than 40 minutes ago before I left my house. At some point the nurse leaves the room and I get half naked from the waist down. As I await her return, I try to make myself comfortable as I sit cold and cross-legged on the examining table with the giant scratchy tissue looking thing covering my nude bits.
When the nurse comes back, I maneuver my body down the table and put my feet in the stirrups as she sits on a low stool with her face between my very unshaven legs. I don’t really think this is a comfortable thing for either one of us, no matter how many times she’s done this. It certainly isn’t comfortable for me, no matter how many times I do this! Then, while talking about something or other, she will either use a giant Q-tip to lightly examine my latest problem (the Lichen Schlerosis , the tear in my anus, the Vestibulitis…whatever) or she will gently apply Lidocaine to my urethra (can you figure out where this is going?). The Lidocaine stings and burns in an attempt to numb my urethra for the child size catheter she is about to insert.
Ever have anything inserted into your urethra? I firmly consider that orifice to be an “exit only” hole, and this procedure sure as hell violates that rule!
When “Susan” is my nurse, she is very gentle as she guides the catheter through the bumps and ridges and whatever else is inside my urethra. When Dr. E. does it (which thank god was only once!) he was not nearly as patient or gentle! Once the catheter is in place, my bladder spews forth more urine, even though I swear I just emptied it, and it is caught in a pink plastic something or other. I never actually see this part since I am covered with a giant tissue, but the first time it happened I was mortified! I thought, not very rationally, that I was peeing in my nurse’s face! When she didn’t say anything about her golden shower, I was left trying to figure out why the hell I still was peeing when I literally went to the bathroom 5 minutes ago! When I finally got up the courage to ask, Susan told me I, A) am not peeing on her face or any other body part and B) it is because my bladder and the pelvic floor muscles supporting my bladder are, and have been, in spasm for so long it is just about impossible for me to truly empty my bladder right now. Evidently the catheter which is scorching holes in my urethra is going to help me fully empty my bladder once a week.
After my bladder is drained, it is filled with a mixture of Elmiron pre-dissolved in (I believe) bi sodium carbonate, water and something else I always forget. Several treatments later, I no longer feel the medicine being pushed through a big needle looking thing into the catheter and finally deep into my bladder, but the catheter still burns and its insertion always makes me feel a terrible urge to urinate (despite the fact that I just did before I got half naked and that my bladder was drained even further when the catheter was initially inserted! How much pee can one person have?) When I’m good and full, of what, realistically is probably two or three inches of liquid, even if it sometimes feels like 40 gallons, the catheter is withdrawn. The procedure is over, and unless I’ve asked a few questions or we have a good conversation going, the entire process takes fewer than five minutes. Sometimes we talk while Susan’s face is still between my hairy legs. Sometimes I scoot back on the table and have the conversation in a more “normal” position. Eventually Susan leaves the room, I get dressed and she generally comes back with whatever new ‘scrips I need or to follow-up with any other questions I might have. She is a brave woman to come back into the room, as I always have more questions to ask!
Finally, I am given instructions to try my best not to urinate for an hour and a half and I am free to go (after I pay, of course!). An hour and a friggin’ half??!! To someone with IC, that is almost akin to asking me to never pee again! The only times I ever go that long without peeing are if I’m asleep (and up until recently I was lucky to sleep more than two hours without needing to get up and pee) or if I deliberately dehydrate myself because I know I am going out and I don’t know where the bathrooms are, if there are any or, if I try mightily to ignore the increasing pressure and painful need to pee, like on long road trips to Massachusetts. Telling me not to pee for an hour and a half is torture sometimes. I might ordinarily be able to hold it that long if no one told me not to pee, but once that edict is given, my bladder pounds at the door of mercy, begging for a bathroom, threatening to saturate my clothes and publicly embarrass me if I don’t release my urine right this very minute!
My Angry Bladder, Part Two
The feelings of a burning urethra and an angry, recently penetrated bladder are generally too uncomfortable for me to drive the half hour or so home. So after I pay “Missy” my $30 for this incredibly fun procedure, and schedule a time to do it again the following week, I usually end up driving 5 minutes to the new shopping center near Dr. E’s office (where I now know exactly where all the bathrooms are in ever store I go in and how clean they usually are!)
There I try to distract myself from my burning urethra and overwhelming need to pee by furtively browsing racks of things I can’t afford or by buying trinkets and baubles and sometimes Christmas gifts. I know I will return many of the things I bought the following week after my next bladder instillation, when the guilt of how much I spent overwhelms me, or I find something even better to purchase. It’s becoming a vicious cycle!
When my hour and a half is finally over, or when I can’t stand the suspense any longer (usually around an hour and fifteen minutes later), I wield my shopping cart like a deadly weapon in an ungraceful shuffle-sprint to the nearest bathroom. After carefully lining the seat with toilet paper or the tissue paper seat protectors (the fear of bathroom diseases my grandmother instilled in me as a kid still lives on, and quite possibly lead to my MPH…but who knows about that last one?), I carefully plop myself on the seat and blessedly, gratefully, sometimes almost orgasmically, release my pent up, medicated urine.
Often I want to moan with pleasure as I profusely thank my bladder for holding on this long instead of seeking revenge by saturating my sweatpants with pee in the middle of the shoe aisle. I am always grateful when I am the only one in the bathroom, in case a moan or two really does slip out. As I sit there, I try to ignore the rageful indignation of my urethra, which is either on fire or bubbling out excess air from the injection, or both. The first time I felt this bubbling sensation, I thought I was farting from my urethra and I debated calling the doctor’s office while still sitting on the throne. I had no idea what to do and no one told me to expect this! Maybe something else was wrong with me and I should get it looked at right away, when I was only five minutes away!
Somehow, I gathered my wits about me, I think it was shortly after I finally stopped peeing, and realized it was probably just air bellowing its way out of my urethra, and while it wasn’t a sensation I was used to, not much of my new life felt normal to me anymore! Finally, after every fantastic post-bladder-instillation-release, I dry myself off, pull my sweat pants back up, wash my hands and leave the bathroom, knowing full well I’ll need another one (or the same one) within the next 30-45 minutes!
Since I am constantly learning about my issues, this week I learned that one of the side effects of bladder instillations are bladder spasms. I learned this three days ago when an invisible stabbing knife slashed its way through my bladder while I was at home urinating. The pain was crazy intense and out of nowhere. It also stopped as soon as I was finished peeing and didn’t return until after my bladder treatment yesterday. I asked Susan about this and she said that it was “normal” and that they probably should have started me on Pyridium prior to any bladder work.
Apparently this is a medication to numb the bladder and the urethra from the trauma of having things shoved inside them. Who knew? I certainly didn’t.
Susan was willing to write me a scipt for either 100 mg or 200mg, because one of the things I’ve learned very quickly through all of this is the massive price variations in medications. She also told me there was non-prescription stuff I could buy that would work just as well. And the perk of this medicine, in addition to numbing areas that shouldn’t need to be numbed, depending on what I take, my urine will turn either bright orange, red or blue (how psychedelic!) and it absolutely cannot be taken for more than two days. She advised me to see which option was best for me and to make sure that I took a dose before next week’s assault, err, treatment.
I admit, I left the office skeptical about taking one more friggin’ med to fix a medication I am already taking and that damn stabbing pain only happened once. Nevertheless, I drove over to the Target (the one in my weekly shopping center, because I wanted to buy Chutes and Ladders, for myself, thank-you very much! And make some returns..again). The incredibly helpful pharmacist looked up how much it would cost for 12 pills in each strength and also showed me where the non-prescription stuff was. I thanked her for her time and still did not see my problem as worthy of $4 for a prescription or $6 something for 30ish Azo pills.
Nevertheless, I had some time to kill before I could pee and I wandered the store until I got tired of listening to all the people complaining about putting off their holiday shopping. As I was headed to the check out, the pharmacist actually met me in the aisle and handed me a bag with her card in it, a coupon for a $10 gift card if I chose to get that, or any other prescription filled there, a list of their generic drugs and the cost of each and two Hershey’s chocolates. I was so surprised by her generosity; I think I got misty eyed. I doubt I will forget that act of kindness!
Still, I did some more browsing, shopping, returning until it was finally time to pee in the usually clean Christmas Tree Shop bathrooms and I left for therapy unconvinced that I needed the medication. I remained unconvinced until after my partner and I finished dinner. I was standing up near the table when that damn knife of pain struck again, momentarily blacking out my vision and causing me to fumble for the table, the chair, a unicorn to support me. With tremendous concern, my partner asked me what just happened. I told him I wasn’t quite sure but I think it was a bladder cramp (that was the word the nurse used) and it really fucking hurt!
The pain spread and intensified and I decided it was time for a trip either to the Walmart or Rite Aid pharmacy, after I peed (which, this time did not really lessen the pain) and before they closed. It was too late at 8:30 pm to get a prescription, since my nurse wrote down what I needed and told me to shop around, so we decided to go to Rite Aid and beg the pharmacist for help right before they closed.
The kindly gentleman who was working there listened to me prattle about pain in my urethra and IC and a catheter and burning and I knew I wasn’t making sense to myself, but he was able to show me my two options and he assured me that it would turn my urine orange and it would numb the pain. I grabbed the store brand, exclaimed, “God Bless you! Merry Christmas!” and hobbled to the cashier as quickly as a wounded turtle.
I wanted to pop the pills right there but they need to be taken with food (Damn it! And I’m not supposed to be throwing chocolate candy bars down my throat for nourishment!!). I waited until I got home (and peed again-even though it hadn’t been more than 20 minutes since the last time I peed) before scarfing something, I don’t even remember what it was, and tossing too oddly colored red pills down my throat.
My partner encouraged me to lay down on the sofa with my heating pad and Thomas, my cat who will rarely leave me alone when I am on the sofa. We had planned to do the vaginal stretches that evening and after a while, I groggily and with increasing nausea, got up, took the rest of my night time meds and went to bed where we could begin the stretching.
The candles were lit, the mood was soothing, my partner was so gentle and I felt so sick I needed him to stop after a mere few minutes. I was sound asleep by 10:30 pm with a heating pad on my bladder to help quell the pain!
When I woke up around 2:30 am I forgot all about the pills I took and couldn’t figure out why the hell the toilet paper was sunshine yellow and the toilet water was Easter egg orange. I thought it was a dream and I went back to bed. When it happened again, a few hours later, I had to show my partner because I couldn’t believe what I was seeing (yes, we’ve reached that stage in our relationship, for many reasons, most of which began two months ago!). He was just as stunned as I was! I went back to bed, grateful yet again that I didn’t have to call out of work as the pain in my bladder twisted its wrath, bubbled its pain and serrated its frustration on my already battered body.
When I awoke for good, and all day, my angry bladder has been dying the inside of our toilet bowl varying shades of orange and yellow, the color, I guess, depends upon the strength of the medicine still inside me. And I’m supposed to do this again tomorrow and for the remaining two bladder instillations?
Wow, I used to think my life was so dull…now it’s almost Technicolor!
There I try to distract myself from my burning urethra and overwhelming need to pee by furtively browsing racks of things I can’t afford or by buying trinkets and baubles and sometimes Christmas gifts. I know I will return many of the things I bought the following week after my next bladder instillation, when the guilt of how much I spent overwhelms me, or I find something even better to purchase. It’s becoming a vicious cycle!
When my hour and a half is finally over, or when I can’t stand the suspense any longer (usually around an hour and fifteen minutes later), I wield my shopping cart like a deadly weapon in an ungraceful shuffle-sprint to the nearest bathroom. After carefully lining the seat with toilet paper or the tissue paper seat protectors (the fear of bathroom diseases my grandmother instilled in me as a kid still lives on, and quite possibly lead to my MPH…but who knows about that last one?), I carefully plop myself on the seat and blessedly, gratefully, sometimes almost orgasmically, release my pent up, medicated urine.
Often I want to moan with pleasure as I profusely thank my bladder for holding on this long instead of seeking revenge by saturating my sweatpants with pee in the middle of the shoe aisle. I am always grateful when I am the only one in the bathroom, in case a moan or two really does slip out. As I sit there, I try to ignore the rageful indignation of my urethra, which is either on fire or bubbling out excess air from the injection, or both. The first time I felt this bubbling sensation, I thought I was farting from my urethra and I debated calling the doctor’s office while still sitting on the throne. I had no idea what to do and no one told me to expect this! Maybe something else was wrong with me and I should get it looked at right away, when I was only five minutes away!
Somehow, I gathered my wits about me, I think it was shortly after I finally stopped peeing, and realized it was probably just air bellowing its way out of my urethra, and while it wasn’t a sensation I was used to, not much of my new life felt normal to me anymore! Finally, after every fantastic post-bladder-instillation-release, I dry myself off, pull my sweat pants back up, wash my hands and leave the bathroom, knowing full well I’ll need another one (or the same one) within the next 30-45 minutes!
Since I am constantly learning about my issues, this week I learned that one of the side effects of bladder instillations are bladder spasms. I learned this three days ago when an invisible stabbing knife slashed its way through my bladder while I was at home urinating. The pain was crazy intense and out of nowhere. It also stopped as soon as I was finished peeing and didn’t return until after my bladder treatment yesterday. I asked Susan about this and she said that it was “normal” and that they probably should have started me on Pyridium prior to any bladder work.
Apparently this is a medication to numb the bladder and the urethra from the trauma of having things shoved inside them. Who knew? I certainly didn’t.
Susan was willing to write me a scipt for either 100 mg or 200mg, because one of the things I’ve learned very quickly through all of this is the massive price variations in medications. She also told me there was non-prescription stuff I could buy that would work just as well. And the perk of this medicine, in addition to numbing areas that shouldn’t need to be numbed, depending on what I take, my urine will turn either bright orange, red or blue (how psychedelic!) and it absolutely cannot be taken for more than two days. She advised me to see which option was best for me and to make sure that I took a dose before next week’s assault, err, treatment.
I admit, I left the office skeptical about taking one more friggin’ med to fix a medication I am already taking and that damn stabbing pain only happened once. Nevertheless, I drove over to the Target (the one in my weekly shopping center, because I wanted to buy Chutes and Ladders, for myself, thank-you very much! And make some returns..again). The incredibly helpful pharmacist looked up how much it would cost for 12 pills in each strength and also showed me where the non-prescription stuff was. I thanked her for her time and still did not see my problem as worthy of $4 for a prescription or $6 something for 30ish Azo pills.
Nevertheless, I had some time to kill before I could pee and I wandered the store until I got tired of listening to all the people complaining about putting off their holiday shopping. As I was headed to the check out, the pharmacist actually met me in the aisle and handed me a bag with her card in it, a coupon for a $10 gift card if I chose to get that, or any other prescription filled there, a list of their generic drugs and the cost of each and two Hershey’s chocolates. I was so surprised by her generosity; I think I got misty eyed. I doubt I will forget that act of kindness!
Still, I did some more browsing, shopping, returning until it was finally time to pee in the usually clean Christmas Tree Shop bathrooms and I left for therapy unconvinced that I needed the medication. I remained unconvinced until after my partner and I finished dinner. I was standing up near the table when that damn knife of pain struck again, momentarily blacking out my vision and causing me to fumble for the table, the chair, a unicorn to support me. With tremendous concern, my partner asked me what just happened. I told him I wasn’t quite sure but I think it was a bladder cramp (that was the word the nurse used) and it really fucking hurt!
The pain spread and intensified and I decided it was time for a trip either to the Walmart or Rite Aid pharmacy, after I peed (which, this time did not really lessen the pain) and before they closed. It was too late at 8:30 pm to get a prescription, since my nurse wrote down what I needed and told me to shop around, so we decided to go to Rite Aid and beg the pharmacist for help right before they closed.
The kindly gentleman who was working there listened to me prattle about pain in my urethra and IC and a catheter and burning and I knew I wasn’t making sense to myself, but he was able to show me my two options and he assured me that it would turn my urine orange and it would numb the pain. I grabbed the store brand, exclaimed, “God Bless you! Merry Christmas!” and hobbled to the cashier as quickly as a wounded turtle.
I wanted to pop the pills right there but they need to be taken with food (Damn it! And I’m not supposed to be throwing chocolate candy bars down my throat for nourishment!!). I waited until I got home (and peed again-even though it hadn’t been more than 20 minutes since the last time I peed) before scarfing something, I don’t even remember what it was, and tossing too oddly colored red pills down my throat.
My partner encouraged me to lay down on the sofa with my heating pad and Thomas, my cat who will rarely leave me alone when I am on the sofa. We had planned to do the vaginal stretches that evening and after a while, I groggily and with increasing nausea, got up, took the rest of my night time meds and went to bed where we could begin the stretching.
The candles were lit, the mood was soothing, my partner was so gentle and I felt so sick I needed him to stop after a mere few minutes. I was sound asleep by 10:30 pm with a heating pad on my bladder to help quell the pain!
When I woke up around 2:30 am I forgot all about the pills I took and couldn’t figure out why the hell the toilet paper was sunshine yellow and the toilet water was Easter egg orange. I thought it was a dream and I went back to bed. When it happened again, a few hours later, I had to show my partner because I couldn’t believe what I was seeing (yes, we’ve reached that stage in our relationship, for many reasons, most of which began two months ago!). He was just as stunned as I was! I went back to bed, grateful yet again that I didn’t have to call out of work as the pain in my bladder twisted its wrath, bubbled its pain and serrated its frustration on my already battered body.
When I awoke for good, and all day, my angry bladder has been dying the inside of our toilet bowl varying shades of orange and yellow, the color, I guess, depends upon the strength of the medicine still inside me. And I’m supposed to do this again tomorrow and for the remaining two bladder instillations?
Wow, I used to think my life was so dull…now it’s almost Technicolor!
Wednesday, December 9, 2009
I’m Grateful for This Much…
I meant to have this posted by Thanksgiving but somehow something absconded with the time I planned to write this…the little thief! But I am slowly learning that every day is a good day to give thanks for something, so maybe it’s ok that this wasn’t posted sooner.
Anyway, to borrow a phrase from a very dear friend, I would like to take some time out of my shock and anger about my diagnoses, and sometimes my life in general to remind myself that, “I am grateful for this much”:
For each day, no matter how much of a struggle it is for me, that I have another chance to be alive, to see the beauty in this world and to be given the chance to grow stronger as I grapple with that which is painful, or difficult or even ugly in this world.
For my partner who supports me, both emotionally and in many ways, financially, and has no resentment about bearing the largest brunt of our financial burdens as I focus on healing instead of finding a job…who stands by my side and tries to understand my pain as if it were his own…who accompanies me to doctor’s appointments and reassures me that this is not all in my head, not something I did wrong.
I am grateful for my partner who, too many times, stands in my shadow, as I focus so much on what is wrong with me, on my problems and my issues. And I forget, sometimes momentarily, sometimes for weeks, that we are in this together and that I am worthy of his love.
For my five nephews, who forget, each time that I see them, that I am in chronic pain. While their head-butts in my back, fierce hugs around my waist or their desires to bounce up and down on my lap (and press against my bladder) are painful, it also reminds me that they see me as their Aunt Elizabeth Goddess, whom they love with all their pure hearts, not as someone who is riddled with problems and somehow untouchable.
I am grateful for two incredible friends who meet me for dinner and listened with their hearts as I told them little bits of how I, how my partner and I, are struggling through this. And I am grateful that they shared with me what is going on in their lives, their struggles and their joys instead of focusing solely on what is wrong with me and how it fix it. Their trust and their sharing helped me feel human and loved, not diseased and shunned.
For my dear friend who shares deeply of her struggles to be where my partner is now…the one who is not diagnosed with a medical problem but still bears the undiagnosed and all too often overlooked burden of inner pain…of bearing the brunt of a partner’s pain and rage…of our distancing and diminishing intimacy…our withdrawal and blame and our sometimes selfish refusal to hear about anyone else’s day…or sometimes even our refusal to listen to our partner’s dreams and fears because we hurt too damn much to care about anything else. I am grateful that she has helped me to see what my partner struggles with and has helped me find my courage to ask him when I don’t know what is going on inside his heart and head.
I am grateful for the silent prayers to a god I don’t know that I believe in but are absolutely a reflection of my friends’ faith and their deep love for me. And hey, prayers and blessings on my behalf sent out to the universe aren’t going to make me any worse!
For my family, who struggle, each in their own way, to understand what I am dealing with…who try to understand “the sudden onset” or why I kept all of these problems to myself for so long…who struggle with whatever my problems stir up for them…who struggle with the right thing to say or do…who have to learn how to live with a whole lot more, “No I can’t do that” instead of the familiar, “Yes, I can help you out with that.”
For my dear friend in Chicago whom I didn’t know was reading my blog and called me, when I was at one of my lowest of low points, to see how I was doing…as he has called me at many other low points, without even knowing it, to see how I am and to let me know that he cares about me and our friendship.
I am grateful for friends who set aside time in their busy lives to call me, text me, e-mail me to “check-in” and see how I’m doing…for friends who take a day off of work so we can get together and talk and cry and remember why we are dear friends in the first place.
For my dear friend and the blessing of her financial generosity…for showing me how to humbly “not block a blessing.”
For the compassion of a friend, whose partner also reached out with love and wisdom, to teach me another set of skills in taking care of my little girl…the one who is so loved and so perfect and is waiting for me to bring her into my heart and love her as every child deserves to be loved.
I am grateful for the waitress who repeatedly asks the chef what is in every entrée I think of ordering and then, with the cook, manages to find a way to prepare Shrimp Scampi in a way that I can eat it and is delicious…and for the waitress after her who was just as patient and understanding of my dietary constraints, despite the number of tables she had to wait on.
For my gynecologist who set all of this in motion, by believing me and referring me to others when she did not have the answers that I needed.
For my therapist who sees me for less money an hour than people who work at McDonalds make…for her strength and her belief in me and for all the deep personal work she did to even be able to get to a place where she could help me and guide me into the gentle, yet long neglected art of caring for myself.
I am grateful for my Pelvic Pain Doctor (who really does look like Santa) and his staff who are overwhelmed with work and responsibilities and the pain and fear of many patients, but still do their best to give me the time I need to answer my questions, to quell my fears and address my concerns each week…and most of all, for believing me in the first place!
For my Physical Therapist, who, after listening to my history, thanked me for trusting her enough to share so much of my life story with her. I am grateful for every visit with her because she takes the time to make her room a healing room…a safe place…for encouraging me to be gentle with myself and my lover. She encourages me to find my own voice and assert my rights to everyone, including her, as well as reminding me, several times in each visit, that I am the one in charge here and we will do what I want when I want it and nothing more. I also appreciate her efforts to discuss how all of this impacts our relationship (between myself and her, between myself and my partner and between the three of us and the rest of my treatment team) as well as what my lover and I can do to deepen our intimacy and connection without having intercourse.
For being able to get “charity care coverage” through my local hospital, which covers my physical therapy and for the woman in charge of the program, who always treats me with respect, not like a poor person who is unworthy of her time.
I am grateful for the endless pharmacists and techs I talked to in search of the cheapest med prices, many of whom gave me priceless tips and saved me so much time and money, in addition to treating me like a human being.
For the pharmacists at Kmart who are the kindest, most compassionate pharmacists I’ve ever had the honor of meeting.
I never in my life thought I would say this, but I am grateful to the big pharmaceutical companies, Johnson and Johnson and Lilly for recognizing that I am too broke to afford the medications I need and are covering three of them 100%.
I am grateful for Snowball, who is destined to become the next Velveteen Rabbit, because over the 20 plus years she’s been by my side, I’ve managed to pick out most of her fur, smother her in snot and tears, throw her carelessly on the floor in the midst of a bad dream or a hopefully good lay and she never complains about being naked or cold or used as a panacea.
For those who read my blog and offer me feedback and let me know that one of my remaining sources of comfort makes a difference in your life too.
Finally, some days, I am grateful for these struggles…for the ways in which they have broken me down, made me re-assess what I believed to be true about this world, about love and friendship and about my own self worth. And I am grateful for the light of hope, even when it is as dim as a dying firefly, that I will emerge a stronger, more compassionate and gentler person who is even more in love with her partner, her friends and family and the world she too often bitterly shuns.
Anyway, to borrow a phrase from a very dear friend, I would like to take some time out of my shock and anger about my diagnoses, and sometimes my life in general to remind myself that, “I am grateful for this much”:
For each day, no matter how much of a struggle it is for me, that I have another chance to be alive, to see the beauty in this world and to be given the chance to grow stronger as I grapple with that which is painful, or difficult or even ugly in this world.
For my partner who supports me, both emotionally and in many ways, financially, and has no resentment about bearing the largest brunt of our financial burdens as I focus on healing instead of finding a job…who stands by my side and tries to understand my pain as if it were his own…who accompanies me to doctor’s appointments and reassures me that this is not all in my head, not something I did wrong.
I am grateful for my partner who, too many times, stands in my shadow, as I focus so much on what is wrong with me, on my problems and my issues. And I forget, sometimes momentarily, sometimes for weeks, that we are in this together and that I am worthy of his love.
For my five nephews, who forget, each time that I see them, that I am in chronic pain. While their head-butts in my back, fierce hugs around my waist or their desires to bounce up and down on my lap (and press against my bladder) are painful, it also reminds me that they see me as their Aunt Elizabeth Goddess, whom they love with all their pure hearts, not as someone who is riddled with problems and somehow untouchable.
I am grateful for two incredible friends who meet me for dinner and listened with their hearts as I told them little bits of how I, how my partner and I, are struggling through this. And I am grateful that they shared with me what is going on in their lives, their struggles and their joys instead of focusing solely on what is wrong with me and how it fix it. Their trust and their sharing helped me feel human and loved, not diseased and shunned.
For my dear friend who shares deeply of her struggles to be where my partner is now…the one who is not diagnosed with a medical problem but still bears the undiagnosed and all too often overlooked burden of inner pain…of bearing the brunt of a partner’s pain and rage…of our distancing and diminishing intimacy…our withdrawal and blame and our sometimes selfish refusal to hear about anyone else’s day…or sometimes even our refusal to listen to our partner’s dreams and fears because we hurt too damn much to care about anything else. I am grateful that she has helped me to see what my partner struggles with and has helped me find my courage to ask him when I don’t know what is going on inside his heart and head.
I am grateful for the silent prayers to a god I don’t know that I believe in but are absolutely a reflection of my friends’ faith and their deep love for me. And hey, prayers and blessings on my behalf sent out to the universe aren’t going to make me any worse!
For my family, who struggle, each in their own way, to understand what I am dealing with…who try to understand “the sudden onset” or why I kept all of these problems to myself for so long…who struggle with whatever my problems stir up for them…who struggle with the right thing to say or do…who have to learn how to live with a whole lot more, “No I can’t do that” instead of the familiar, “Yes, I can help you out with that.”
For my dear friend in Chicago whom I didn’t know was reading my blog and called me, when I was at one of my lowest of low points, to see how I was doing…as he has called me at many other low points, without even knowing it, to see how I am and to let me know that he cares about me and our friendship.
I am grateful for friends who set aside time in their busy lives to call me, text me, e-mail me to “check-in” and see how I’m doing…for friends who take a day off of work so we can get together and talk and cry and remember why we are dear friends in the first place.
For my dear friend and the blessing of her financial generosity…for showing me how to humbly “not block a blessing.”
For the compassion of a friend, whose partner also reached out with love and wisdom, to teach me another set of skills in taking care of my little girl…the one who is so loved and so perfect and is waiting for me to bring her into my heart and love her as every child deserves to be loved.
I am grateful for the waitress who repeatedly asks the chef what is in every entrée I think of ordering and then, with the cook, manages to find a way to prepare Shrimp Scampi in a way that I can eat it and is delicious…and for the waitress after her who was just as patient and understanding of my dietary constraints, despite the number of tables she had to wait on.
For my gynecologist who set all of this in motion, by believing me and referring me to others when she did not have the answers that I needed.
For my therapist who sees me for less money an hour than people who work at McDonalds make…for her strength and her belief in me and for all the deep personal work she did to even be able to get to a place where she could help me and guide me into the gentle, yet long neglected art of caring for myself.
I am grateful for my Pelvic Pain Doctor (who really does look like Santa) and his staff who are overwhelmed with work and responsibilities and the pain and fear of many patients, but still do their best to give me the time I need to answer my questions, to quell my fears and address my concerns each week…and most of all, for believing me in the first place!
For my Physical Therapist, who, after listening to my history, thanked me for trusting her enough to share so much of my life story with her. I am grateful for every visit with her because she takes the time to make her room a healing room…a safe place…for encouraging me to be gentle with myself and my lover. She encourages me to find my own voice and assert my rights to everyone, including her, as well as reminding me, several times in each visit, that I am the one in charge here and we will do what I want when I want it and nothing more. I also appreciate her efforts to discuss how all of this impacts our relationship (between myself and her, between myself and my partner and between the three of us and the rest of my treatment team) as well as what my lover and I can do to deepen our intimacy and connection without having intercourse.
For being able to get “charity care coverage” through my local hospital, which covers my physical therapy and for the woman in charge of the program, who always treats me with respect, not like a poor person who is unworthy of her time.
I am grateful for the endless pharmacists and techs I talked to in search of the cheapest med prices, many of whom gave me priceless tips and saved me so much time and money, in addition to treating me like a human being.
For the pharmacists at Kmart who are the kindest, most compassionate pharmacists I’ve ever had the honor of meeting.
I never in my life thought I would say this, but I am grateful to the big pharmaceutical companies, Johnson and Johnson and Lilly for recognizing that I am too broke to afford the medications I need and are covering three of them 100%.
I am grateful for Snowball, who is destined to become the next Velveteen Rabbit, because over the 20 plus years she’s been by my side, I’ve managed to pick out most of her fur, smother her in snot and tears, throw her carelessly on the floor in the midst of a bad dream or a hopefully good lay and she never complains about being naked or cold or used as a panacea.
For those who read my blog and offer me feedback and let me know that one of my remaining sources of comfort makes a difference in your life too.
Finally, some days, I am grateful for these struggles…for the ways in which they have broken me down, made me re-assess what I believed to be true about this world, about love and friendship and about my own self worth. And I am grateful for the light of hope, even when it is as dim as a dying firefly, that I will emerge a stronger, more compassionate and gentler person who is even more in love with her partner, her friends and family and the world she too often bitterly shuns.
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