The most unwrinkled bladder in the west...

Well I did it… Yesterday I had the Botox injected into my bladder. It was quite the day, not at all what I expected.

I set the alarm the night before but kept saying it was pointless because Titus was going to wake up before then anyway. I took some pretty strong meds to ease the pain and help me sleep before the big day so when Titus woke up an hour after I fell asleep I was useless. I called my Mom on my cell phone and some how managed to communicate that Titus was awake and I… was not. She came into our room and must have realized how drugged I was so she took the monitor after the got Titus back to sleep.

Next thing I knew she and Titus were in our room in the daylight and it was 6:30… the time we were suppose to be leaving (turns out I said it for 5:45 PM… oops). I quickly nursed Titus then showered… accidentally shampooing my hair twice and forgetting conditioner. I threw on some clothes while I glared jealously at Zach eating cereal. I, of course, couldn’t eat before the procedure.

We got in the car and mapped out the best way to miss traffic and I was feeling a little apprehensive when Zach reassured me, “babe, I’m a do-er!” Sure enough… we got to the hospital with one minute to spare!

I got all settled in with my IV and every thing was ready to go! The pleasant anesthesiologist gave me some lovely drugs and the last thing I remember I was laying on a hard bed shivering in the big, white operating room.

The next thing I knew I was sobbing because the pain was so intense. I was in the recovery room surrounded by other post-op patients and nurses. There was a nurse perched on a stool next to me and quickly injected fentanyl into my IV… the pain eased but was still an 8 or 9. She had to give me two more doses before I finally stopped crying and could breathe normally. My throat hurt from the tube that was down it during surgery, I was itchy from head to toe, my bladder ached, and worst of all… my urethra burned so bad. It hurt to have any weight on it or even my legs closed together.

Finally my favorite nurse Tom came and moved me to Day Surgery where I would spend the rest of my time at the hospital. We picked up Zach on the way and he squeezed my hand which made things seem a bit easier. Tom gave me some toast, benadryl for the itching, and vicodin for the pain. I was feeling pretty good and Zach told me he had talked to the doctor who said it went well and they actually stretched my bladder because it was only half the size as it should have been.

I knew it was coming… my bladder was full from all the IV fluids and the water I had drunk for my scratchy throat. I had to go to the bathroom. I cautiously sat down on the toilet and the pain ripped through my body as the bloody urine drained from my body. I started crying again and my body was so tense but I still managed to empty my bladder.

Tom directed me to a reclining chair where I had to tilt my bottom to the side so no pressure was on my sad urethra and he gave me a half a dose of fentanyl. After a while all the pain meds kicked in and I slipped in and out of pain.

After about an hour my bladder refilled with IV fluids and I had to empty it again. Zach carried my IV bags while I held my gown shut and gloomily shuffled to the bathroom. Once again the pain was extreme… No matter what I did the pee just kept coming until my bladder was satisfied that it was empty enough.

My pal Tom was on standby with the rest of the drugs and I told him I was ready to go while the pain meds were working. So I quickly (as quickly as you can that loaded with drugs) dressed in my hospital issued underwear and clothes while Zach signed all the release forms. He left to bring the car up while Tom drove my wheelchair to the exit. We loaded up and were on our way. I fell asleep after we argued about which way to take home and didn’t wake up until we were pulling into the neighborhood.

I got home, got straight into bed and slept for a few more hours. When I woke up the familiar fullness was telling me what I had to do again… I waddled to the bathroom (trying not to let my legs touch my sensitive areas) and sat begrudgingly on the toilet doing the same old song and dance. This time was a little bit easier because I got to get in the shower to ease the pain right after.

The rest of the night I watched the clock waiting for time to take more meds like a bird watcher wanting to see a rare species. I went to bed around 10 but spent more time reading The Hunger Games than actually sleeping. (I know… I’m just now reading it… so un-hip.)

My bladder is so sore from all the shenanigans of stretching and injecting it. My urethra feels like they used a blade rather than a stealthy scope. The pain hasn’t eased up at all and I am taking vicodin on the hour, every 4 hours. I’m sleeping on and off, only eating when I have to eat with the medicine so I don’t vomit, and I’m either laying with a heating pad delicately placed or sitting on my side in the shower.

They said we won’t know if it helped or not OR if it caused retention or not for at least a week… Zach picked up a nice supply of self catheters just in case. Hopefully the pain and soreness from the procedure eases soon and the benefits start at the earliest possible moment.

I promised when I started this blog I would be honest and 100% me… so I hope this wasn’t way too much for some of you. My aunt Claudia specifically… she doesn’t like details…

When I was researching Botox for IC I couldn’t find any thing about the procedure so I hope this enlightens some of my fellow IC patients who are contemplating this. I don’t want to scare you, just inform you. I am actually feeling pretty hopeful that it will help and if not, I will still be glad I did it because it’s better than always wondering if it would have done the trick! 

A puddle... of piddle...

Don't be alarmed... this is not urine... just a  picture I took of a regular, run of the mill rain puddle! 

Sitting, standing. Inside, outside. Laughing, silent. At home, in public. Washing dishes, giving Titus a bath, riding in the car… my bladder isn’t too picky. I lose control of my bladder and empty it then and there under any circumstance.

To make matters worse, the high pressured stream of urine that escapes from my bladders inadequate security system burns the whole way down.

I have two options. Try to tense my feeble muscles to stop the flow… which then causes so much pain from the quivering weak muscles holding back the flood and the fact that I still need to release the urine. Or just try to relax and breathe while the puddle of pee gets deeper by the second.

Depending on the situation I prefer to choose option 2… although it makes a huge nasty mess and is really embarrassing, the pain is less blinding. No matter which method I choose it is so frustrating.

Whatever I’m up to when suddenly the flood gates open I have to stop immediately. Depending on who’s around I some times strip right there and leave the mess for some one to clean up. Other times I waddle up the stairs in my drenched clothes where I strip and leave my pee soaked pants in the sink.

The worst times have been in the car… I never go to the bathroom away from the house unless it’s absolutely necessary (read my public restroom blog to find out more). Often times I wait too long and I find myself in a splashing pond spilling over the leather seat. (Oh great… I’m never going to get a ride any where, ever again!) In this case I do my best to stop the pee but I usually continue going tiny bits the whole way home. I have started keeping an extra pair of pants in my car for any public accidents but that doesn’t help the pain issue.

As soon as I can I get in the shower to rinse the poisonous urine off of me and to try to ease the pain. Most post-incontinence episodes include hours in the shower and usually my succumbing to taking pain medicine.

My incontinence has gotten so out of control that I have been having major accidents like 3-5 times a week. I have been strategically leaving the house after my bladder is as empty as can be and then trying to get home before I need to empty it again.

While at my urologist I mentioned this new amplified version of my usual symptom and she agreed that was not a way to live.

So tomorrow I am going to the hospital, being put under general anesthesia, having a scope voyage up my urethra, and then having my bladder injected 20- 30 times with Botox.If I understand it correctly… it is suppose to relax the muscles to stop the spasms and general disobedience. The only concern is that it may cause more retention which would force me to self cath (yes that means what you think it does… put a catheter in by myself every time I have to go to the bathroom to drain my bladder).

It would be so grand if this helped! I’m told it can be effective any where from 6 to 20 months. Also, it can be repeated as frequently as every 6 months.... if it helps!

So, I am praying my guts out that it will control my bladder muscles enough to hold the urine in BUT be able to relax enough to release the urine at the appropriate times, specifically when I tell it to.

I have heard it takes about a week to notice any difference so be expecting a follow up Botox blog! Thanks for reading and all of your continued prayers.  

Is the grass greener on the other side?

I have a mild obsession with a the alpacas at a local farm… every time we drive past I can’t help craning my neck to see the latest alpaca going ons. (A couple years ago Zach and I went to “Alpaca Days”… I bet you didn’t know they are in the camel family! Fascinating!) Last month during a record breaking 2 weeks of summer-like weather the farmers decided to start shaving the animals for their expensive wool when suddenly the temperatures plummeted and the rain started. Fortunately, or unfortunately depending on who you ask, they only shaved one before the flood gates opened. So among the dozens of furry llama looking creatures one shaved long necked freak sticks out like a lemon at an IC party… So now every time we drive by I yell… NAKED! I’m sure the freezing alpaca-sicle enjoys that.

Anyway… as we drove past the fuzzy farm I noticed one of my pals had his head stuck through a tiny hole in the fence to munch the grass from the other side. I, of course, laughed hysterically as he struggled to get his head back to the correct side but my deeper soul couldn’t help thinking that the old saying is true. “The grass IS greener on the other side”.    

It’s an interesting concept because it is totally how people, and apparently animals, think! Don’t feel bad, I know you do it, we all do!

Short and shapely girls want to be tall and skinny… while those statuesque girls wish they had curves. People in the dessert crave the rain… while us Seattleites beg for sunshine. (Seriously… please Mr. Sun?) Those struggling financially pine for money… while the ritzy titzy just want love. The busy people long for a minute to themselves… while bored and lonely people want plans with friends. Single people yearn for a life mate… while married people wish for more independence. Parents want more “me time”… while infertile couples try every thing to have a baby. Stay at home Moms want adult time… while working Moms just want down time with their precious tots. Most applicable to OUR IC lives, the sick people just ask to be healthy… while other people THINK having no job, no responsibilities, and even relaxing in the bath all the time sounds grand.

Isn’t that interesting? I mean seriously… that is just a few examples but I can pretty much guarantee that in every scenario there is some one wanting for some thing that some one else has who in turn craves some thing else. Why can’t we just accept our lives and why must we always compare?

We all have challenges and we all have blessings… some may seem greater or worse than others but ultimately God has dealt each of us our lives and there is no re-deal! I’m not saying to not attempt to improve the bad but let’s be thankful for the many benefits of our situations. In every single scenario mentioned above there is an advantage and disadvantage to each, I bet there is in yours too!

Our lives would be 100 times better if we focused on OUR lives and OUR circumstances instead of comparing them to others and wishing for bigger and better. Change what you can but accept what you can’t.

So let’s lays it out there… I have to be in the shower for hours a day BUT we have a hot water tank that lasts for days! I have a hard time planning things in advance BUT spontaneous plans are fun too! I have to be dependant on others BUT that has made me very close to my support system. I miss Titus when I’m in the shower BUT he is connecting with his Grandma and Daddy! I stay up super late in the shower BUT my Mom takes Titus after I feed him in the morning so I can catch up. When I’m sick it’s so hard to keep up on chores BUT my hubby pays for some one to help clean every other week!  I get lonely and bored in the shower BUT my family comes by to visit and I get lots of time to read. I some times practically live in the shower BUT I am so thankful I have some thing that helps the pain. I have bad nausea and vomiting BUT it has helped me lose weight! I am in lots of pain BUT it could be worse without the resources supplied to me.

I’m not one to be bossy… insert guffaw from loved ones… but seriously give that a try! List every thing you feel is bad in your life then write a counteracting positive trait, it is very eye opening.

Also when you start thinking… dang she is so lucky because she gets to sleep in, has people clean for her, relaxes in the shower all day, has time to read, and has lost weight so easy… try to consider the other side of things… I know I am lucky that I have all those things but I would give it all to just be pain and incontinence free! If my hypothesis is correct this is true for every scenario. We all say “must be nice” when people have money and go on regularly scheduled lavish trips and always have the latest style of shoes in every color but we don’t know how hard they are working or what other things they have skipped to budget for it. We must stop judging others in this way!!     

Okay… before you think I am getting TOO self righteous…know that I am probably one of the worst at this so this is a huge reminder for me.

You girls with IC, this disease sucks… I totally know chum. Until there is a cure we have to keep treating the symptoms as best as we can, living our lives as much as we can, ignoring others judgment if possible, and looking for the best in every situation. For those of you without IC… you lucky little jerks, you have it so easy. HA! Just kidding! (See what I did there?) Seriously though, this does apply to every one but please try to cut us IC chicks some slack… put yourself firmly in our pee dribbled shoes and imagine what it would be like before you judge and we promise to do the same by not just assuming since you don’t have constant pain you live on easy street.

It's shocking...

A few weeks ago I felt a pinch deep inside… I ignored it until a few days later when it had transformed into a full blown shock. I turned my interstims off with much hesitation. Every one tried to convince me to go to the doctor but I knew the old routine and the bad news that goes with it but I just wasn’t up for it yet. So with my interstims off the pain continued and the incontinence intensified.

Finally a few days ago I got out of the car, did a jolly little hop/ skip and felt like my interstim dropped out of my back. I knew I had to get things checked out.

Today I finally gave in and went to see my beloved urologist, (after going to her for over 10 years she feels more like my friend than my doctor). I was right, the interstim wires moved. After doing an x-ray we found out the interstims leads had some how pushed in deeper, closer to the nerve. So every little stimulation felt massive and painful because it was right on top of the sensitive nerve.

Dr. Jacoby reprogrammed my troubled interstim so that the leads that were running were the ones furthest from the nerve but even then I had the level on .60 and could feel it like it was at a 10!

The whole time we reprogrammed I knew what was coming… the dreaded impendence test… I think of it as a virus scan on your computer but it checks to make sure there is no damage to any of the tiny wires running through my body. It always hurts when she does this test… it runs through all the programs so I feel little bursts of electricity all over…

Little did I know today would be the worst impendence test ever because of the close proximity to the nerve… when she started we were chatting as usual when suddenly my body convulsed and threw itself in the air. I instantly started crying because the sheer pain was too immense. I was sure I was being electrocuted and was pleading inside for it to be over. I looked over at my mom who was also crying and looked so scared, Titus was staring at me like I was possessed and my doctor was reassuring me it was almost over. Finally after about 30 seconds that felt like 30 minutes it was over. My body ached after my internal firework show but I was so thankful that it was over and the test showed every thing was ok.

We talked about a new treatment we could try if the new interstim settings didn’t work and she sent me on my way. As I shifted to different positions the rest of the evening the crazy high stimulation was too much, I turned it down to .30.

Then I lost control of my bladder and headed up to the shower… I had been in here for about 3 hours when the shocking started again. I yelled for my Mom to bring me my remotes and I turned it down to .15. I know it will be worse if I turn it off so I am trying to withstand some shocks… but seriously, this is so annoying!

The thing that is supposed to be treating my symptoms is causing new symptoms… what the heck?!? My poor bladder is exhausted after this crazy electrically charged day and the pain is immense. I took some vicodin to try to take the edge off but now I just feel drugged and nauseous with just as much pain and still in the shower!

I really didn’t want to post another depressing blog because I keep hearing how sad it is and that’s now what I wanted it to be… but this is my life people! I’m not sugar coating it but I’m not exaggerating either… I wish I was.

I am blessed.

When I think about a support system, I envision some kind of intricate assembly line like on the show, How Its Made. Each bolt, lever and doohickey has their very own job. Together they form one solid machine that performs perfectly.  

I have made it the last 12 years with IC thanks to a very precise and complex support system. I can guarantee that I wouldn’t be who I am today without each gog and wheel that makes up my well functioning appliance.

One of my hopes when I started this blog was to help family and friends of IC sufferer’s know how to help their lovelies. I am so fortunate in my solid support system and I pray that every person with IC has at least one person to help bear the weight of this life sentence. But in an ideal world she would have several people each with their own job. One who lets her vent, one to motivate and encourage but never minimizes, one that physically supports her (i.e. drives her to the doctor, takes over for her when she’s sick, hugs… lots and lots of hugs), one that thinks positively, one that is a realist, one that pushes her, one that lets her relax, one that lets her cry. None of them ever question her pain, never blames her for IC, always makes her feel normal, always makes her laugh and most importantly always loves and accepts her.

It is one of the hardest jobs you will ever have but I guarantee it is also one of the most important and you will be forever loved. Even though we hate it, the nature of IC makes us very dependant on other people and those people have to be strong and solid or we will not do well in our life with IC. So if you are a tool in some ones support system please take my advice. To summarize in three steps… just love them, support them, and never doubt them. Oh… and NEVER complain about the pee soaked pants in the bathroom sick… ask my husband, he’s learned that lesson well.

A day I will never forget was my wedding day… obviously it was a very special day for many reasons but to have every single person who loves me in one room was amazing. I actually lost control of my bladder and peed in my beautiful wedding dress. My Mom and sisters patiently helped me change my nylons and calmed my frazzled nerves. Then I walked down the isle, arm in arm with my Dad seeing the 200 people there to celebrate with us and of course Zach standing at the altar smiling as wide as his face would allow… it was too much… I started sobbing. It was one of the best days of my life and just a glimpse at how very blessed I am.

Dad and me hand in hand down the isle

Some people balked when I got engaged at 20 and married at 21 but God gave me Zach just when I needed him. Zach has been there for me since day one. He listened to my overly detailed descriptions and warnings about what it would mean to hang out with a girl with IC on our very first date then went home that night and googled interstitial cystitis to find out more.

Since then he has been so patient with every canceled or ruined plans. He has been there for every surgery and has doted on me during my recover. He brings me what I need in the shower and even some times sits on the hard bathroom floor to keep me company. He is happy when our date night it ice cream and a card game rather than a lavish night out. He holds my hand through the pain. He loved me when I was EVIL from medication side effects. He never pushes me or makes me feel guilty. He calls me his “PYT with IC”, (pretty young thing for you Michael Jackson haters!) He has been the perfect husband for this season of life and I imagine he will continue to be in the fall and winter of my life as well. I am blessed.  

Zach and me when we first started dating

Titus is a tiny little screw in the giant machine but if it were to get unscrewed just a tad the whole thing would come crashing down… no pressure little buddy… He doesn’t even know it yet but he does so much for me. He pushes me to get out of the shower and to live a life that some times seems too hard. He makes me smile and my heart shiver with love no matter what I’m going through. I am blessed.

Just minutes after Titus was born

I don’t even know where to start with my other key apparatus in my life’s support system. My Mom was the one who took me to the pediatrician on the first day we thought I had a bladder infection. She was in the room when the first anesthesiologist knocked me out. She has helped me through every single surgery. She has taken care of Titus on days when I can’t. She has cleaned up thousands of my puddles of piddle when I have an accident. She brings me food in the shower. She does my laundry when I don’t have the energy. She cries with me. She laughs with me. She supports me. She thinks I’m brilliant and exceptional. She does so much for me; I pray daily I won’t take advantage of her love and support. She is the best Mom God could have given me! I am blessed.

My mom and me at her birthday party 

My Dad is another important part of my device. Because of his running a company, his own health issues, and he’s a boy… he hasn’t been as physical of a role in my IC journey but he has supported me through every day. I think it may be harder for him when I’m in pain than it is for me. He prays for me and his pleading for my healing make me confident that it will happen one day. His most important job is that he makes me laugh when there really is nothing to laugh about and makes my troubles seem far away. I am blessed.

My Dad, Titus and me on a golf cart ride 

Another important person in my life that has been with me through it all is my sister, Jeny. She is only 13 months older than me so we have always been really close and have done every thing together. I know it’s been hard for her to have a sick sister. A lot of the attention has been on me over the years because of IC, well truth be told, before that I’m pretty sure I had props to entertain her unsuspecting friends during sleepovers. But from the time she was 13, I was sick and sad. That’s a lot to put on a 14 year old. She did great though, she has always helped me and though she gets annoyed with me. (I actually do talk this much in real life) She is my greatest defender and would knock any body out who talked bad about me. Not only all that, but she has been my best friend since I was born and will be until we’re old and still quoting Friends episodes.

Jeny and Deni- BFF's for life

A few years ago I was in pre-op getting my IV put in when I got a text saying some thing like… “best of luck, praying for you, oh by the way while you’re in surgery I’m getting a tattoo for you. Love you!” I quickly yanked my hand from the nurse searching my arms for the perfect vein and tried to sway her before they knocked me out. No such luck. I woke up with a picture of it on my phone…. Although my Mom nearly had a heart attack and I was definitely stunned, I was so honored! The butterfly is the unofficial IC mascot and right inside was my very name, branded on her wrist forever. I am blessed.

Forever.

My older siblings Dana, Dave, Todd and Carolyne are also champions in my support system. Although they have not seared my name into their flesh they have been with me through every thing. Dana and Dave have always prayed for me through surgeries and flares. Todd was at our house when I got home after my scariest surgery; I was still awake when they started and I remembered it all. I couldn’t even lay on my stomach with out having flash backs of the pain of being cut open… he was definitely petrified and didn’t know what to say but the look in his eyes told me I was loved… and he would kill whoever did it to me if he could find them. Carolyne, Todd’s wife, has become a good friend and visits when I’m bored but can’t get out of the house. Not to mention the beautiful nieces and nephews the four of them have given me whom I love with all my heart! I am blessed.

My immediate family!

If you already think I’m lucky in the sibling department you won’t believe the list continues with Zach’s brother Jared and his wife Rachel. Not only are they great in-laws, they are our best friends. They hang out with us at our house when I’m not feeling good, we go out and celebrate when I am, and we do calm leisurely things when it could go either way. They always have our back and are willing to help in any way they can. Best of all they accept me and love me even though we’re tied through marriage and not blood. I am blessed.

The four of us going out to dinner for my birthday

My Grandparents are not only pillars of our family but a strong foundation in my support system. They always like to be updated on my latest IC trails and tribulations and come over to visit when things get bad. I spent a lot of time at their house when I was growing up with IC and my Mom had to work. It was hard to be sick and young but those times are some of my favorite memories. Playing games and lounging around all day with these people that loved me so much. My Grandma has taken me to a few procedures and doctors appointment, she has always supported me and been my biggest Team Deni supporter. To her the doctors are always wrong and I am the best patient ever! On top of seeing her regularly we still have long phone conversations weekly. My grandpa is a strong and silent type but he chuckles quietly at my silly jokes and shakes his head in frustration when I tell them the latest IC hardship. They are my go to supporters and always just a phone call away. I am blessed.

4 generations

Speaking of my Grandparents… they also have 3 other kids besides my Mom. My aunts Claudia and Ginna and my uncle Jay! Claudia emails and calls regularly to check on me and is real strict when it comes to the rules I should follow, especially while recovering from surgery. She always tells me to call the doctor… if it were up to her I would have a direct line to them for easy access 24/7. She always tells me how amazing my attitude through every thing is, which is a good reminder to have a good attitude. I am blessed.

My aunt Ginna is a very hands on, “let’s fix it” supporter. She wants me to try new things, new diet restrictions, and new medical trials. She has bought me many IC books and encouraged me to push the doctors to try the latest and greatest. She makes me hot water bottles when I’m some where that I can’t shower. She hates that I’m in pain and wants to fix it. I am blessed.

Jay is my very cool, hip uncle. He tells great stories, knows all the good places to hang out in Seattle and is literally the most talented person I’ve ever met.  Not only that but he is a man full of unwavering faith and once said it would be interesting to see me write my very own Psalms. I like to believe that some day I will give that a try, as daunting as that sounds. He also made that awesome cartoon for my Avenger blog and offered to be of service in the future! I am blessed.

Naturally with all this family I would have cousins as well… 6 to be exact. Well actually it was 6, until they all got married so now I have 12. These are 12 of my best friends. I some times have to really think to remember which ones are the original cousins and which are married in. I wish I had time and space to go through each one and boast about their many merits but just trust me when I say they are an impressive bunch. The men have welcomed Zach into the family and love us both. Even though I’m the very youngest by several (sorry, just sayin…) years, I feel completely included in the group of women cousins and very accepted by all of them. When I was 5 and my oldest girl cousins were 14, I would have never guessed they we would be so close 20 years later. They all check on me regularly, pray for me, visit me, and most of all… support me. Like my whole support system they each do different things for me in their own ways. I am blessed.

My WHOLE family... minus a few of the recent babies! 

With my unusual and unpredictable life it’s quite tricky to stay close with friends. When I don’t feel good it’s hard to push myself to get dressed and go out to catch up with friends. But some how I have stayed friends with a few from junior high and have even made a couple new once since. It’s hard to be friends with me… I cancel plans, I wear sweats in public, I may pee on your couch at any given time… but against all odds I have friends! Even if I don’t see them often or we just catch up on facebook... I am blessed. 

Kassy and me at 6th grade camp... friends for 18 years! 

Elizabeth (friends for 22 years) Janette (friends for 12 years) and me in Hawaii 

My friend Nicole and me... friends for 6 years!

As you can see my support system is a strong machine built up of many parts and I am very blessed. Each one is essential and without any one I would have serious problems. I pray that every single person with IC has a strong base of support or at least one person that they can always count on. I wish I could loan out my system to all of you because truly… it’s one of a kind. Thank you to all of you who make up this complicated system. If you are a part of my or some one else’s support system please know how important your job is and continue to be patient, understanding, supportive and most of all loving so that we all know we are blessed.  

Saying goodbye

First of all I want to thank you for reading this and allowing me to go completely off IC topic for one blog… I didn't know how else to cope with this. I know my fellow Ic’ers have animal companions to help them through this disabling disease and so maybe some of you can relate with the unconditional love to and from an animal and maybe even the heart break of losing them.

The day is looming, no matter how I joke and pretend it’s not going to happen, I know it is. Who would have thought 13 years ago that it would come to this… our beloved golden retriever, Lilly is being put down. No matter how many times I write it or say it or even read the ticket confirmation that my sister is coming home to be here when it happens… I just can’t accept it.

Lilly has been a part of our family for over 13 years and though she has definitely been mischievous and created more work for us at times… she has been a family member and I could always count on her. This week so many memories have flooded my mind of her faithfulness and love over the years.

Jeny and me with Lilly on Christmas 1999

Technically she is my sister, Jeny’s dog. She got her after her hard transition from elementary to junior high as a prize for doing well even with tough times. My pain and heartache from losing Lilly is probably miniscule compared to Jeny’s grief and sorrow. Lilly has been through so much with all of us but she has truly been Jeny’s best friend.

Jeny and Lilly the summer of 2000

Lilly has also been with me through every hill and valley of my life. I remember one particular dramatic teenage break up I was home alone and crying like the broken hearted teenager I was. For some reason I was rolled into a ball on the kitchen floor and suddenly I felt the reassuring weight and presence of Lilly’s head on my leg. She was calm and when I looked in her face I could feel her love and concern. (Great… here come the tears…)

Lilly in my car before she and I went for a drive, 2007

Lilly and I had a special thing just between the two of us… my feet. I have always loved when she licked my feet… I know its weird… to me, it felt like a mini pedicure and our beloved Lilly would know that when I stuck my foot in her face to devotedly lick it, but only mine because most people hate it. (I truly don’t understand why!)

When Zach and I got married we got a tiny 3 lb yorkiepoo named Tucker and he and Lilly were the best of friends. With 100 lbs difference they made quite a pair but they rolled together on the floor playing and cutest of all… snuggled together real close for naps. Lilly was Tucker’s baby sitter, when we left the house we put them both in the laundry room and they nestled together in the giant dog bed until we got home.

Sadly enough we had to give Tucker up for adoption because of his faulty potty training. We had tried every thing but while trying to get pregnant we knew we couldn’t have a baby around such an unpredictable tinkler…. Besides me of course.  Lilly was very sad for a while after Tucker left... not only had Zach and I lost our precious baby dog but Lilly lost her best friend and play mate. 

Lilly and our baby dog Tucker just hanging out, 2009

During my pregnancy Lilly was a faithful companion and always by my side, she never was hyper or barked much… she was just there protecting me and this new little presence she could some how sense in her doggy way. Around that same time my Dad got a bad infection and was really sick. So my Mom and Lilly would take turns spending time with me and him. When my Mom was in the bedroom with my Dad she would find me and plop down as close as possible. Any time she saw my Mom she knew my Dad was alone and would go lay right next to his bed or outside the door. We called her Nanny, like on Peter Pan. It was actually quite amazing.

The day we got home from the hospital after having Titus my mom presented him to Lilly, she gave him a sniff and it was immediately obvious that she accepted him, vowed to protect him and most of all… love 

him.

The introduction, Titus meet Lilly... Lilly meet Titus, September 2011

Which she did! When he in his swing or bouncy seat she’d lay next to him just in case any thing happened. Now that he’s able to crawl you can’t keep him away from her… he climb on her sore, old body yanking out fistfuls of hair as he goes. We, of course, discourage this and pick him up right away but Lilly just lays her head down and consents to the agony it causes. When she gets the chance she gives him a nice lick on the face to confirm her love and approval. I am so sad that Titus won't grow up knowing or remember this special dog, hopefully I can do her justice with all the stories I will surely tell. 

Lilly protecting Titus, November 2011

One of their many kisses, May 2012

Best Friends, May 2012

But most of all… she has been with me through all the IC up’s and downs. She was there when I missed school and was bored and lonely. She was there when I stunk and no one else really wanted to be around (see last blog). She laid right next to the tub while I sat in the shower (some could argue that she liked the warmth but I think it was me!) She would lay in bed with me and watched Disney movies while I tried to ignore the pain.

Eventually her arthritis disabled her so much that she couldn’t go up the stairs and now she can hardly get up on her own. Her back legs fall out underneath her regularly and she barks in fear every time she has to transition from carpet to hardwood. She has to use my Dad’s wheelchair ramp to get in the house from outside and she wakes up multiple times a night to go potty. She has lost some control of her pottying and can’t hear or barely see any more.

But in spite of all that, she painstakingly gets to her feet and follows us just to be close and settles in as close to us as possible. Even in her pain she still tries to protect us when she smells trespassing wild animals outside.

We know it would be selfish to keep her here for us but it’s so hard when she is still the selfless, loving dog she always has been.

The day is almost here to say goodbye, I don’t know how I will handle it. Maybe ignore it and pretend Jeny and my Mom are just taking her to get groomed and shout down “bye, see ya in a bit” from upstairs. Or maybe make stupid jokes to attempt to make the mood light and keep me from crying. Or most likely sob uncontrollably while making stupid jokes and telling old funny Lilly stories so that we all laugh through the tears.

Goodbye Lilly. You have been a great dog for all of us, I'm sorry that we have taken for granted all that add to our family over the years. We will miss the way you always carry around a stuffed animal, we will miss your talking and roooooo's, we will miss your loyalty, we will miss your happiness to see us when we get home, we will miss you playful spirit even in your old age, we will miss your  unwavering love and support, we will miss your acceptance of us as imperfect humans, we will miss you at Christmas which you seemed to always enjoy, we will miss you when it snows, we will miss you on sunny days, we will miss you when it rains. Thank you for being our friend, companion, and dog. We will never forget you and always love you. 

May 2012... beautiful girl at every age

Treating IC without any treats.

This one is for my fellow IC sufferer's who are reading my blog, which by the way, when I started writing this my dream was to have other IC'ers read but I can't believe its happening and reaching so many of you! Thanks for reading! 

The unique and troubling thing about interstitial cystitis is that each case is completely different. That makes it really hard to accurately diagnose and properly treat. When I was finally diagnosed the first thing we asked was, now what?

There is no cure for IC. It’s a hard pill to swallow… pun totally intended…. But it’s true. There are several treatments and coping methods but it is some thing that is as much a part of an IC sufferer as their big nose or loud honking laugh (okay maybe that’s just me).

One of the first things they recommend for urinary pain is called pyridium. It’s a little pill you can get over the counter and turns your urine a shocking, Easter egg dye orange. It’s supposed to ease pain, burning, and can reduce urgency/ frequency… It doesn’t really help me and make me feel like I had teletubby. However, it’s harmless so definitely give it a try!

The first oral medication the doctor prescribed me was called amitriptyline and is actually an antidepressant but some times reduces pain and relaxes the bladder. I, personally, saw no difference from this but I continued taking it for years with no bad side effects.

Then the big oral mamajama is Elmiron. It is actually the only FDA approved medication for IC and has been known to restore and protect the bladder wall from that poisonous urine. I, as luck would have it, am severely allergic to this particular drug and wasn’t on it long enough to find out if it would help.

Another some times effective treatment is a cystoscopy and bladder distention, which is a procedure that they send a scope into the bladder to check things out, get rid of any ulcers and stretch the bladder with gas or air. I did have this procedure but since frequency isn’t one of my issues it wasn’t worth all the trouble!

Speaking of voyaging into my bladder… another typical treatment of IC is sending a catheter up the urethra and releasing medication in there. I imagined it like a bug bomb... I had to visualize some thing annihilating and evil to get through the torturous procedure.  The medicine they place in the bladder is known as DMSO. They use a smaller catheter first and inject lidocaine along the way to hopefully numb things up but that does practically nothing to alleviate the pain of the boa constrictor sneaking its way to my bladder. (They actually used the pediatric size because I was only 16 but I’m going to tell it like it was 6 inches in diameter and don’t you dare say a word!)

The funny thing about this particular treatment is that the medication is actually only in your body for 15 minutes and then you pee it out but the smell stays with you. I wish my Mom could tell you her side of the story… I tasted a mild garlicky flavor but didn’t really smell any thing. TURNS OUT… years later she told me, this is a direct quote, “you smelled like some thing dead from the sea.” WHAT! For those of you that know my Mom you know it was bad. She has never said a bad word about any one, much less me.

I knew that others thought I smelled fragrant but I had no idea it was THAT bad. I just texted my sister and asked if she remember what it smelled like her text back was, “well um let’s start with seaweed, add on sardines then other rotten things and then steam them up and add garbage.” No worries about my fragile feelings though, please don’t hold back Jeny… Love you too.

Now that I am typing this I am being flooded with realization and offense. I just remembered riding home from the treatment on a cold rainy day and my Mom having the window open. I kept asking her to roll the window up but she convinced me she was boiling hot… probably while shivering. Also I remember being in sheer agony from the process and wanting my Mom to lay next to me and watch a movie and I’m pretty sure she had a towel over her face the whole time. Rude.

So! After 6 weeks of once a week treatments and 24/7 stench the pain was worse from all the catheterizations and I was definitely never doing that again.  BUT, by all means… you give it a go, I highly recommend you get a nice hotel room with a jetted tub and tell you’re loved ones you’ll see them in 6 weeks! Unless you’re less fragile that I was at 16 and don’t mind clothespin nose plugs and sea-like scent descriptions for years to come.

Another “minimally invasive” (HA!) treatment is physical therapy. Due to all the muscle tension and general jacked-upness, (medical term) the goal of PT for IC would be to train the muscles to contract and relax when they are supposed to. They start out doing deep tissue massage in the inner thigh and abdomen, don’t start thinking this is a jolly relaxing massage… it hurts, like being rubbed with a nice relaxing pair of scissor.

Some therapist even migrate to more… sensitive regions… but that can hurt more than help so only if they are IC specialists and the patient has severe pelvic floor dysfunction. They also teach lots of stretches and exercises to work out the muscles that are too friendly with the pelvic floor muscles.

My favorite part of physical therapy was the biofeedback. They would place electrodes around the pelvic flood and watch on a computer screen the tension at rest and when contracting. It was amazing to see at rest my pelvic floor muscles were like an Olympians biceps. If only my arms could get that kind of work out!

The goal of physical therapy is to teach techniques that you can implement yourself and train those misbehaving muscles… it’s like boot camp for pelvic floor muscles! It can help overtime but it’s definitely a long road.

            I know lots of people also have regular, relaxing full body massage’s weekly to relieve tension in the rest of your body that stems from all that amplified tension starting at the pelvic floor.

            Acupuncture is also recommended a lot but I personally had a bad first experience and am kind of scarred. The acupuncturist went about her work of making me into a voodoo doll (most likely of her cheating ex, I’m sure) then left me to, what? Rest? For like a half hour and in that time dozens of needles were popping out of my skin at impressive speeds. No thanks.

           

Also there are the usual… reduce stress, wear loose clothes, low impact exercise, use baby laundry soap for you panties, and of course changing your diet. I am planning on writing another blog about this but one of the best ways to manage IC is by staying on a strict low acidity diet. There are giant, contradicting lists but the worst are the 4 C’s: carbonated drinks, caffeine, citrus, and vitamin C. Also tomato products, alcohol, and really most spices are bad triggers

There is a nifty albeit disgusting trick of drinking baking soda mixed with water to neutralize the acidity if you are feeling risky and try a new food or just want to splurge. After having IC for 12 years I now know what I can eat, what I can tolerate, and what I definitely need to stay away from. It takes adding and subtracting from your diet to really personalize and fine tune it.

            There are also tons of medical trials and research going on every day for IC and if I weren’t in such a bad place with my IC I would be first in line to try out every new thing. I actually don’t qualify for most of them because of my endometriosis and the interstims plus right now I can’t because I’m still nursing! Last I heard there was a trial where they insert a pretzel shaped object into the bladder for 6 weeks that releases a steady stream of lidocaine, sounds lovely right? Of course with trials you never know if you have the real deal or the placebo but I would say it’s worth the risk.

Okay… I saved the best for last. The old faithful interstim… The interstim is a sacral nerve stimulator that is implanted into the back. It works with the sacral nerves near the spine with mild electrical pulses. The interstim strikes up communication with the nerves and the brain to, ideally, achieve control over the bladder and related muscles. While working properly it feels like gentle tapping. 

It requires at least a couple surgeries but most likely many over years. The surgeries require the patient to be awake and tell the surgeon and interstim rep where they feel the stimulation. Once they get it in the right place it can be very successful but I have found it to be very illusive and sensitive. I am NOT the most active person in the world… I may actually be the least active person in the world… but I have managed to break or dislodge many of the tiny wires that are placed in the precise, proper location.

HOWEVER, the only time I have urinated easily was after I got my second interstim making me “bilateral”. They were both functioning and positioned perfectly but that only lasted a month or so until things went awry as they do. I have had more surgeries, pain and heart ache due to the same machine that has eased my pain, stopped my incontinence all together, and made me feel normal. (normal as you can feel with two battery packs bulging out of your back that people like to refer to as garage openers and regularly ask if the can charge their phone or send a fax through me.)

                                                                                                 

I don’t know if I would recommend the interstim to a friend with IC… My latest experiences would lead me to say no. 8 weeks ago I had surgery after losing weight and doing too much after my last surgery which cause one wire to get broken and crimped and the other to dislodged from the nerve completely. They turned them both on in the recovery room. (I only vaguely remember this because of the anesthetic but I’m pretty sure I answered correctly in between begging them to let me sleep) From that day on it never felt great… I turned it down so low I couldn’t even feel the stimulation and I had more incontinence than ever before. Now they are both off because they kept shocking me like a naughty barking dog with a shock collar. So I’m basically at the same place I was 8 weeks ago except now with back pain from the surgery. But like I said… the best and worst times of IC have been because of my good friends the interstim. So it’s a risk I am willing to continue making.

An important thing to know about the interstim is that it has never been for pain… it is designed to help with urgency, frequency, retention, and incontinence… which if those things are better can in fact reduce pain.

            I wish I could make this more exciting and uplifting but truly this area of IC is frustrating and dreary for me. I know there are lots of people out there living completely normal lives free from pain and symptoms because of a mix of these treatments. If you are recently diagnosed I recommend trying every thing the Doctor recommends and seriously giving it a good try, all of these things take time and tuning to make them right for each patient. Best of luck!

            **Disclaimer** I am literally the least scientific person in the city of Ravensdale if not the state of Washington. Try to take my medical ramblings with a grain of salt (I have never understood that saying… why salt? Oh! I just looked it up… apparently it was known to be an ingredient to a poison antidote…. Ooooh!) I am just here to tell my experiences and finagle out some advice from them.  I hope you learn some thing and are mildly entertained while you’re at it.