One more thing...

I’m coming out of retirement for a minute. I have to set something straight and instead of continuing to write posts trying to sum up everything I thought I would just write one more blog…

I have a problem. Somehow after all this mayhem and ridiculousness I have gone through I have been placed behind thick Plexiglas and put on display as if a scientific marvel at a museum. People who have been battling hard with IC suddenly see me as the “lucky one”, the “survivor”, the “one who conquered IC”. They think I’m living this grand life now that I “don’t have IC”. Now that I’m “healed” I get to live this life that we’ve all wanted to since they day we were diagnosed.

I’ve tried to be open about my hardships post-op but they don’t want to hear it or believe that it could be any worse than what they’re going through right now. They’re sure that what I’m going through is “for a purpose” and is “just temporary” and will be “all worth it soon”.

So I’ve stopped talking to people with IC frankly. I love these women so much. I was one of them for so long but I was being unintentionally put down and shunned by them. Some of them still cared because we had built a relationship outside of our diseased bladders but the majority either didn’t care anymore, just wanted to know how things were going for their own purposes, or… this is the best… were jealous of me.

Anyone who has been close to me throughout this horrific recovery, which admittedly isn’t many people, know that there is absolutely nothing to be jealous about. My lovely naturally wavy hair that usually does itself- sure. My hardworking, good looking hubby- you bet. My ability to make fried chicken to rival any Grandma- now we’re talking. But why in the world would anyone be jealous of my current life, I have no idea? The only thing. I mean the ONLY thing that the women on the other side of this disease have to be jealous of me about is that I can eat whatever I please. BUT. I’ve been so incredibly sick the last 4 months that I haven’t been able to enjoy eating at all. More on that later.

When I was miserable and waiting completely impatiently for surgery I talked very highly about the life after surgery, I basically plated it in gold and hung it on my wall to give me strength to get through what I needed to. So maybe these women think I’m living the life I wrote lavishly about, the life I still dream about having some day. Maybe they truly just don’t understand…

The thing is… This surgery that I had almost 4 months ago has a huge recovery that lasts anywhere from 6 months to a year. I’m not even close to the finish line right now. Each day I have improvements, stalls, setbacks, re-do’s, triumphs, failures, new goals, new hopes, and new focus. It’s not all bad but that doesn’t mean it’s all good.

Even a year after surgery, even two years after surgery, I will not be normal. I will not be this lady who once had IC and was miraculously cured. I will be a lady who doesn’t have a bladder, who got out of the war of IC alive but who lost her bladder. I will wear a bag every single day for the rest of my life. I will worry about my stoma and my skin around it every day. I will stress every pound gained or lost for fear of it affecting my stoma. I will be aware of each ounce I drink, hoping it’s enough. I will have my bag fail, because after all it’s just plastic, and my stinky, mucus filled urine will spill. I could keep going but I have more to say about other things…

I was diagnosed with IC when I was 14 years old and for 12 years I was in pain and dealing with the crazy symptoms every single day but no matter how horrible it was it didn’t fully consume my life until this year. It was December 30, 2013 that I had my interstims removed and botox injected into my bladder. I woke up from that surgery and was never able to pee on my own again. My bladder stopped working. At first I tried catheterizing myself but it kept getting stuck and I would have to rip it out shredding things on the way out. Then I had multiple foley catheters, the basic kind you have at the hospital, that caused several, severe bladder and kidneys infections. Then I had a suprapubic catheter placed. It went straight into my bladder through my bikini line area. It wasn’t anchored or sewed down in any way so each time I dropped the pee bag I toted around it literally tore the hole it was coming out of, if I moved the bag wrong the urine made a hasty return to my bladder, and the inside of my bladder was aggressively damaged by the part of the tube that was inside.

Each of those methods had their benefits and downsides. They all caused indescribable, white hot, stars twinkling around my head, breath-taking pain. My bladder had finally failed me. It was not functioning in any way. After 4 months of trying these alternative urine draining methods my doctor and I knew that my body couldn’t handle much more. I was taking more narcotics that anyone could believe, I was in bed 98% of the time, I couldn’t take care of my son, I couldn’t leave the house… my bladder had not just died but it was taking my life with it. I was alive and most likely it wasn’t going to kill me, unless there was an uncontrollable infection from all the catheters, but each day I was losing my life a little bit more.

So my wonderful doctor admitted she had done all she could for me and sent me to the University of Washington to the premier Urologist in the state for bladder removals. He primarily treated patients with bladder cancer and was kind of taken aback by me at first. He didn’t know what to do with someone who needed their bladder removed when it wasn’t really trying to kill them. So he listed several risks and reasons NOT to do the surgery and then sent me on my way to meet with some other specialists to verify that this was truly my only option and for me to get more information.

I did as he requested and then came back a few weeks later even more desperate and terrified. I went into his office not sure what he was going to say but after consulting other specialists and thinking about it more he knew that although this disease wasn’t truly going to kill me, I wasn’t living. I was so young, just 26, and I had so much life to live and I could not spend the rest of my life how I was. He and his medical team realized it wasn’t a question of if I was going to have this surgery, it was a question of when. Removing my bladder was my only option. I had a dead organ in my alive body and we had to remove it.

There was no convincing needed from either side because it wasn’t a question of opinion. This needed to happen. It wasn’t to better my life or relieve my pain, it was to continue my life.

Fast Forward to today, almost 4 months after surgery. I haven’t had any of the life threatening side effects that are always a possibility with this huge surgery. Yet it’s been the hardest thing I’ve ever gone through in my entire life… Just imagine what it would be like if any of the major risks would have happened….

Adjusting to my stoma and all the urostomy things has been a challenge. There is so much I still don’t understand and each time something weird happens I freak out until I find out whether it’s normal or not. The stitches just dissolved around it recently but before that, every time I cleaned the area it would pull them. I am still trying to find a wafer that works with my sensitive skin so it constantly feels like I have duct tape over brand new sunburn. I’m always having issues with my bag and my night bag connection and I spill urine almost every time I hook and unhook to it. I have to clean my bed bag every day, change my bag every 3 days (assuming everything is going well) and drain it several times a day. I am still learning the best way to do it all. My urine reeks to high heaven and is full of mucus because the piece of intestines that they recruited for the conduit still thinks it is intestines so it creates a disgusting thick egg-y junk that clogs my bag.  Plus I still hate the way my stoma looks, I stare at the pulsing piece of intestine sticking out of my stomach with the chunky, mushy urine coming out and I am repulsed by my own body.

One of the biggest risks of this surgery is having bowel problems and that is one thing I have dealt with in full force. My digestive tract is still so annoyed with being messed with that it throws a great temper tantrum regularly causing severe abdominal cramping, constipation, diarrhea, and blinding nausea. This started the day after surgery and is still blazing with full force. I will be minding my own business when BAM it comes on out of nowhere having my running to the bathroom or bent over in agony.

When they removed my bladder they also removed my urethra but were able to save my vagina. However... in doing so… they had to use the roof of the vaginal canal to stitch shut the area that was once my urethra. The pain in my pelvic floor is still, 4 months after surgery, way worse than it ever was before surgery. It’s different but worse. I can’t sit in a normal chair or wear underwear without severe pain. Recently I started having green discharge that I thought was stitches coming out but it hurt so incredibly bad that I got it checked out only to find out I had a bad infection down there and it was some kind of weird calcified bacteria. My whole vulva and vaginal area is covered in irritation and open cuts leaving the whole area just raw.

Since I’ve basically been bed ridden for a year my muscles have weakened to an extreme level. So when I started doing physical therapy I had to relearn to walk. I also have been in pain for so long that my muscles are so tense we have to retrain them to relax. My body is so used to pain that I flinch at the very lightest touch from anyone. Each week we make some progress and then something happens… like this vaginal infection… that sets us back a few weeks. The most I’ve been able to do is do some stretches on an exercise ball, work on my balance, start strengthening my core, and just get me used to moving and touch again. I’ve been doing physical therapy with an amazing therapist who knows what she’s doing for 4 months and we are still really just at the beginning of my treatment.

Just this morning I laid in my bed curled up in a ball hurting literally from my toes to my neck. On Sunday we had my family over for my son and my Dad’s birthdays so I pushed my body hard and I’m paying a high price for it. My muscles ache, my back keeps slipping out of alignment, my toe curl up and my shoulders are at my ears from tension, my stoma throbs, my vagina burns and aches… It’s so overwhelming. It all hurts so badly and I have such a long way to go.

I could go on and on and on and on and on but I think you probably get the picture. This recovery really sucks.

I hate this.

I hate every single day.

I think about if this was the right decision and even though I truly had no choice I still wonder what would life would be like if I didn’t do it.

I’m not cured of IC… IC just beat me. I lost to it. It battled 13 years for my bladder. Finally I gave up, IC won and took my bladder as it’s prize.

So don’t you dare say I’m lucky, that you would give anything to find a doctor that you could convince to take out your bladder. Don’t even say that I made a brave decision. I didn’t. The word “decision” implies that I chose this and I didn’t. If I had any other option I would have taken it in a minute.

I don’t care that I can drink wine and eat salsa because I don’t even want to go down the stairs to the kitchen, much less eat!

Don’t get confused by my pictures on facebook of me looking healthy and normal. I’m still in bed 75% of the day and have to force myself to push for my family and my sanity. Every moment of every day is hard.

I left the world of IC because I was sick of being put on a pedestal and becoming a mascot for bladder removal. I wouldn’t encourage anyone in the world to do this until it was absolutely necessary. I’m talking… until you can’t: get dressed, drive, be home alone, go a few hours without heavy narcotics, pee on your own. Hold onto that bladder and to hope until you literally cannot any more. Find a doctor you trust with your life and if they say you aren’t there yet then celebrate! Live when you can. Wear whatever you want because you don’t have a bag full of stagnant, rancid, chunky, mucus filled urine hanging off of you.

I’m not saying that IC is better than this life I’m just saying it’s the same. So don’t make this MAJOR decision lightly. Don’t treat it like a bad tooth that needs to be pulled. This is an organ you need and use all day long and I guarantee as much as you hate it, you will miss it when it’s gone.

To save myself from being driven further insane I have decided to leave all the IC groups and separate myself from that disease that conquered me but don’t you dare think that it’s because I’m living a charmed life. Don’t end up where I am until you have to be. Make this decision very carefully and thoughtfully and do not think that once your bladder is gone you will live a normal life. Make sure your support system is ready for the new strain, new pain, new heart ache, new disgust…

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(I hate writing blogs like this one… full of negativity and horrors but someone had to talk about the realities of this major, life changing side of effects of this surgery. I love all my readers and want all the best for every person with IC. I continue to pray that there will be a cure or even an effective treatment for interstitial cystitis.)

After posting this I recieved quite a few angry or confused message from IC patients so I clearly need to clarify further.... This is NOT directed at any one and I’m not mad at anyone for saying anything. I just get concerned when people say certain things because it makes me think they don’t understand what a HUGE, life changing thing this is. I don’t want people to think that you can simply get your bladder removed and then POOF! You’re magically healed! That’s so not the case. I appreciate all the love, support, care, and concern from every single person in the IC community and even if I get miffed at times about little things I still look at my time with all of my fellow IC sufferer’s as a very positive and healing experience. Like I said in the beginning of this blog… Some of the friends I’ve made through the support groups are friends that will stand the test of time and life changes. I treasure those relationships because they are about so much more than our similarly diseased bladders. Again, I really meant this blog to be helpful and informative, not condemning or shaming and I hope that it will be received as such! Love to you all!!!! 

The End of an Era

Interstitial Cystitis has been such a huge part of my life for so long that in some ways it has defined me. I have been known to chant “I have IC, I am not IC” while standing on my biggest soap box and waving around a flag with a cartoon bladder (metaphorically speaking of course, what do you think I’m a lunatic?) but no matter how much I wanted my stance to be true it really wasn’t. I don’t know what determines your most defining trait in life. For some people it’s their job, their title, their relationship, or their family but for me it’s always been my illness. I’ve been known as simply the “sick girl” by many people. This disease has forced itself to the forefront of my life so in many ways that is what my life has become. My IC. 

Since starting this blog over 2 years ago this definition of me has only deepened. I found myself fully immersed in the world of IC. Many of my best friends were women who also struggled with IC, a good majority of my friends on facebook were fellow IC sufferers, I was involved in multiple IC support groups, I wrote about IC, I talked about IC, people asked me questions about my IC, and so on. I couldn’t escape it.

Whether I liked it or not, I was my IC…

However, as with anything, being defined by just one thing can be risky. Once that changes or ends you are left undefined. Since my radical cystectomy (total removal of my urethra and bladder) 3 months ago I have found myself confused as to who I am. If I was my IC and I no longer have IC then where do I fit, who am I?

I’ve considered writing and posting updates about everything that’s been going on in my recovery and my life but I am confused because my blog is about my life with IC and I do not have a life with IC anymore. I have been miserable, confused, scared, alone and all I wanted was to talk to the ladies in the multiple IC support groups but I don’t have IC anymore, I don’t belong. I even feel unwelcome in the IC support groups that I started and once moderated, how could I talk to them? It wasn’t the same anymore. What is a support group if not a group of people who are going through the same challenges? 

So I am in this weird limbo, a purgatory of sorts. I don’t have IC anymore but I’m far from being well. I am still in the deep trenches of recovery but I don’t have any bladder symptoms anymore.

I feel like a nomad looking for a place to settle and call my home. I would really like my home to be wellness but I’m a realistic sort and try not to give in to lofty goals. I believe I will be well some day but most likely later rather than sooner. 

When I started this blog it was really more to update all my loved ones on my health in one fell swoop and although it exploded from there I know that my most loyal readers aren't sufferers of IC but people who love me. So, even though this has hardly anything to do with IC here is just a quick update… 

Everything is pretty much on schedule. It’s been 3 months since surgery and I can see a little progress each week but I’m still dealing with lots of things that go along with such a major surgery. I get horrible cramps that leave me bent over and gasping for air. I have lots of pain all over my pelvic floor area from the massive remodel the doctors preformed. I get shooting pains in my abdomen regularly. My stoma is still adjusting to its new job and fluctuates a lot. I am still getting used to having all the ostomy supplies attached to me 24/7 and I struggle with trying to find the perfect wafer for me. I can look at my stoma with hardly a twinge of repulsion, I can change my bag and wafer by myself very easily now. I haven’t had an ounce of “phantom pain” or anything like the pain I dealt with for 15 years before this surgery. I am down to 2 narcotics a day but I am hoping to start the process of weaning to 1 a day soon. I have chronic nausea that I’ve always had and new bowel problems that I’ve never dealt with. I am still getting used to my body’s new extreme need for lots of fluid and I disappoint it most days with not enough. I can walk and do most things on my own now but I still can’t lift anything above 20lbs. I am always exhausted, whether I’ve had 3 or 15 hours of sleep in a day I can never shake the desire to cuddle in my bed and sleep. It's very unpredictable when I will feel okay and when the pain and exhaustion with overwhelm me.  When I started physical therapy I could barely walk, do exercises, or even be touched without extreme pain but now I ride the bike for 10 minutes each session, do multiple exercises, and I can even withstand manual work that helps my tense muscles relax. I have wonderful doctors and a fabulous God given gift of a physical therapist.

So it's an interesting time full of a thick combination of challenges and triumphs. It's similar to my incisions… They’re healing and looking better every day but they are still bright red and very tender to the touch. Some day my scars will be barely noticeable and I will be healthy and full of wonder of my new life.  

Truthfully I feel like if I had not been so sick and miserable for so many years I would be on the verge of being murderous but comparatively I'm doing pretty well. I just feel a heavy weight of expectations from myself and my loved ones. I feel like there are so many expectations of me. This surgery was supposed to give me this grand, healthy life and 3 months later I’m only a little bit ahead of where I was before surgery. I push when I can but there are days and things that I truly just cannot do. It’s disappointing and frustrating for everyone. 

December 30, 2013 was when my IC went from bad to unmanageable. My bladder stopped functioning, it was in full retention and the pain was truly unbearable. So when I say this year I literally mean all of 2014 has been about my pain and broken body. I have been telling myself to just let 2014 be a year of recovery and healing but it’s difficult to just take the moments as they come when the moments are so painful. My hope is that by 2015 I will be well and mostly recovered. They say its 6 months to a year to recover from this surgery if you started out completely healthy before…Which I obviously didn't. No one is expecting me to be living a normal life yet. I just have to remind myself of that from time to time. I’ve had 29 surgeries before this one that were 6-8 weeks of recovery so it’s easy to forget that this is a totally different situation. 

Clearly I am in a new stage of life, I no longer have a chronic illness I have an acute recovery that will be over some day. Now that I’m in this new phase of health I have decided to retire this blog. I will leave it up for people in the future who are fighting battles that I’ve fought before them. I will check it occasionally and try to answer any questions that I can. What I was struggling with 2 years ago and is completely irrelevant to me today is what someone else is trying to conquer right now. I’m humbled by the fact that “How IC It” still has daily views and regular comments. I love this blog like a child that I birthed and raised but like with a child, you have to know when to let it go. I have held nothing back along this journey but my struggles and triumphs are just not relevant to this blog’s platform any more.

When I started this blog one long, painful, lonely night over 2 years ago I never could have imagined that it would have 40,000 views from readers all over the world. I never could have guessed how many people would call me brave and selfless for sharing my story. More than that… I never in a million years could have predicted how much it would help me get through, cope with, laugh off, and fight.

This blog has done so much for me. It gave me a voice when things seemed too unjust to bear. It gave me a purpose when I felt completely useless. It gave me perspective when my typing fingers wrote what I didn’t even know I was thinking. It gave me a support system of other IC sufferers that I could have never built on my own. It gave me a place to write when I just needed to sort things out. It gave me a way of communicating to the masses when I couldn’t handle talking about heart wrenches obstacles over and over. It gave me confidence in my ability and gift of writing. 

I could go on for days… This blog has been an amazing, life changing gift to me.

I’m so thankful for all the encouragement and support of every single reader, whether you’ve read one blog or every single post. I guarantee I would have given up on this long ago if it weren’t for all of you... Thank you for forgiving my long rants, my innumerable complaints, my typo’s and errors, my dozens of pictures, my distractions, my wanderings off subject and blogs that made little sense to anyone else.

I have this vision of me in a deep pit (like on the Pooh movie, yes I have a toddler) and you all are at the top all lined up pulling a rope lifting me out. Not just once but over and over. Most people would have tossed me a ladder and told me to stop getting in the pit or figure it out on my own but you all put your own selves into saving me so many times. Thank you.

Lastly, September is IC awareness month, find your favorite blog of mine and share it on facebook or twitter. Tell people about this horrible disease and even donate if you can. I lost 15 years of my life and my bladder to this horrible disease and there is a huge need in this community for research and treatment options.

I have some ideas of writing projects to take on next, keep an eye out! Until then... over and out, see ya later alligator, au revoir, adios, farewell, hasta la vista, peace out, arrivedercie, cheers, bonjour, ta-ta, Godspeed, goodbye, take care… 

As all good things must...

At the end of something extraordinary there should be such pomp and circumstance that people all over the world feel it and celebrate without even knowing why. However the most humble people create the most extraordinary things so often times these endings go with barely a flash of festivity.

I have desperately searched the most creative corners of my brain for something that I could do to celebrate this occasion but as the day draws near I am left with nothing because even my best ideas seemed inconsequential to such a momentous time. Rather than trivialize it with a plate of cookies or a jar of jam I thought maybe I should keep it simple, for once, and write a little tribute about this remarkable man and his phenomenal career.

On May 21, 1987 my Mom labored and then literally pushed me into the hands of Dr. Dennis Brown. It was obviously a good day for me but for him it was just an ordinary day like any other. I was just one healthy baby among thousands that he helped welcome into the world throughout his career.

My Mom and me

However our journey didn’t end there, not even close. 12 years later I starting having pain that my immaturity led me to believe was my stomach. After seeing a few other specialists and finding nothing that could cause the intense pain that stole my breath my Mom decided to take me to see Dr. Brown.

As any 12 year girl would be, I was terrified for my first appointment with the “woman doctor”. I literally recruited my sister to tie me to a tree in hopes that my grand gesture would convey how desperately I did not want to go. Of course that didn’t work because I have a good Mom. She told me all about what might happen and how kind the doctor was but I didn’t care one bit. It all sounded positively horrible.

I sat in the waiting room watching the fish in the obligatory waiting room fish tank just dreading the moment they would call me back to meet this… Man... With no help from the fish or my Mom I knew there was no getting out of it. Finally I was called back and the nurses kindly reassured me everything would be okay. I was still not convinced.

As the heavy exam room door unlatched, clicked and squeaked open I knew the moment had arrived. In walked a smiling gentleman in a white coat. He was middle aged, tan, and had a smile that went all the way to his eyes. He didn’t have me change into a gown or even sit on the exam table. He sat by my Mom and me and he used his perfect bedside manner to gently pull my guard down and get me talking. Suddenly it wasn’t scary anymore. Not long after that, he had my total trust.

After some tests and procedures he officially diagnosed me as his youngest patient to have endometriosis, actually I think I still hold that title! Together we started the journey of dealing with this incredibly painful, chronic disease. So many office visits, treatment attempts, and surgeries made me a frequent flyer patient.

Throughout my already difficult teenaged years he treated me with the utmost respect, I was Deni… Not Endometriosis. No matter the complications, issues, or frustrations he stayed steadfast and confident in his treatment plans while still remaining completely open, even excited, to try new things when others weren’t working. Unconventional and ground breaking treatments were things he embraced with giddiness while he still relied on the tried and true regularly.

Just over 10 years after that first nerve wracking appointment I went into his office again but then with my husband instead and I was declaring that we were ready to start a family. I think he knew it was going to be a hard road to get my dysfunctional body to perform the gigantic tasks I begged it to but he once again made plans and reassured me it would work out. After a long, emotionally draining, physically brutal year in which he was by my side the whole time it was his nurse that called to confirm that it finally worked. I was pregnant.

My pregnancy felt like anything but the miracle that it truly was. I had hyperemesis gravidarum meaning I was nauseated from the word pregnancy to the word delivery and vomiting was more regular than eating. Dr. Brown didn’t let up then, if anything this gargantuan challenge was for both of us and I couldn’t have asked for a better team mate. Thanks to his necessarily aggressive medical and emotional support, I got through it.

The circle was complete on September 12, 2011 when he pulled my healthy, chubby cheeked son out of me via c-section. He delivered a baby of a baby he had delivered 24 years before that. Awesome.

Me and my brand new baby boy

After that my health took a turn for the worse and he guided us again as we tried to get my body to do what it was meant to do just one more time to have a second baby. When it was finally, unmistakably clear that my body couldn’t handle another brutal pregnancy he was with me, mourning the loss of a baby that wasn’t even a cell… Just a dream.

However, his encouragement, care, and skills were never more displayed than when we agreed it was time for a total hysterectomy at age 26.

He is a rare, genuine gem unlike any other doctor I’ve ever come across. He shares his life with his patients and becomes a part of his patients lives. He knows and remembers things about his patients that aren’t written in their chart and can only be cultivated through a long, genuine relationship. He listens when we talk, he answers questions we didn’t think to ask, explains and demonstrates things in a way anyone can understand, and he goes above and beyond the call of duty. He created a different, safe, personal world within the otherwise sterile confines of healthcare

More than anything he cares for each and every one of his patients. From the young, newly pregnant moms, to the women he shepherds through the many changes of womanhood, to the baby he watched over since the size of a pea.

I would be devastated as the day that Dr. Dennis Brown will hang up his white coat and stethoscope draws near but I can’t think of one person in the world that deserve a long, happy retirement more than him. After years of selfless service and care it is time for him to enjoy the family he has shared with us through proud updates, stories and pictures and for his family to finally get to fully enjoy this wonderful man after sharing him with all of us over the last 40 years.

Dr. Dennis Brown, you are loved and appreciated by so many! My family and I especially want to express our greatest gratitude and appreciation for everything you have done for us all throughout the last 30 years. You have helped, healed, saved, created, and delivered so much to us. 

You trusted me, you listened to me, you talked to me, you laughed with me, you cried with me, you taught me, you healed me, you cared... 

You’ve done well. Now go, be selfish and frivolous! Enjoy life just like thousands are doing because of you! 

Report!

I can’t believe today marks 8 weeks since I had my radical cystectomy! In some ways it seems like years ago and in others it feels like just the other day… I don’t have anything too ground breaking to reveal but I thought I would write a quick “8 Week Post-Op Report” (I always wanted to be a newscaster when I was little so pretend like really important news music is playing while you read this…)

In some ways I am making so much progress, passing up recovery benchmarks, and jumping over hurdles daily but in other ways I feel like there is no end in sight to this recovery process.  

Physical therapy is intense and really hard but as my Dad reminded my Mom so helpfully while she was in labor “no pain, no gain”. I am going twice a week and I am so blessed to not only have the most amazing physical therapist in the world but she just happens to be like 5 minutes from my house! She really wants to help me get through this recovery and she pushes me to do so but she also knows when I need to stop and gives me lots of rests.

You wouldn’t believe that the things she has me doing hurt so bad but they really do. She told me to stop putting myself down but seriously… A regular person would laugh at the things I’m pushing my hardest to do.

Physical therapy has many purposes for me- to help rebuild all my muscles, strengthen up, and increase my endurance after over a year of basically being in bed and recovering from surgery.

It is also to help retrain my body and my brain after 15 years of chronic pain. She said it is physically impossible for me to stand up straight at this point because my shoulders and sternum are so tight after years of being so tense! I even have to relearn to walk because my body still instinctively curls up and tries to protect my body from pain.

As I progress we will probably continue to find problems and then matching solutions but right now it’s pretty basic. I’ve been riding a recumbent bike, walking, working on my balance, and she has been using her special physical therapy magic to gradually stretch and relax my muscles. You would think it would just be my tummy muscles but even the muscles surrounding my collarbone are so tender!

So PT days are hard days, I work and push hard. I usually spend a few hours with ice or heat in bed afterwards but it’s getting easier to cope with. My body is relearning things it hasn’t known how to do in 2 months, 6 months, a year, or even 15 years… This will be the longest part of my journey to recovery and it could be years until I’m in the kind of shape I always wished I could be in and  able to do things I've always wanted to do... i.e. be able to walk in a straight line or open a jar…

My whole entire body is feeling all the changes as I start pushing it to do what it is meant to do. Lately my lower back, feet, abdomen and legs have been getting the brunt of the pain from working muscles I haven’t used in so long. I have fallen a few times after pushing my body, my dang legs just get to a point where they can’t hold my own weight for another moment. 

Another hard (pun intended) part of recovery has been my bowels adjusting to life without the piece of intestines that the doctor recruited to be my conduit. For weeks after surgery I had horrible diarrhea and I was so miserable but it didn’t take too long for it to turn into severe constipation. A couple weeks ago I had my post-op CT scan which showed I was full to the brim! 

Between not eating, low activity, all the meds, and dealing with so many changes I’m not really surprised my body is throwing somewhat of a hissy fit about the whole thing. I thought as those things improved so would the digestion but that has not been the case… I have been taking an excessive amount of medication to help with this problem but nothing is doing the trick! I literally look 5 months pregnant. I recently complained to my Mom that my tummy was so swollen I didn’t even have fat rolls anymore! I just had these little indents that made me look like a snowman… After a few minutes of her hysterically laughing and calling me Olaf I realized she really needs a break…

Anyway, the constipation has brought on a whole slew of other troubles including water retention making my hands and feet swell as well, extreme cramping, loss of appetite, extra pain around my fresh incisions that are being stretched, and increased nausea… Not to mention looking like a snowman and not having any pants fit…

Another unexpected complication has been in my whole pelvic floor/ vulva area. They removed my urethra, which meant they had to reconstruct my vagina because of course the vagina’s ceiling is the urethra’s floor. Even though it’s been almost 2 months since surgery that area is still taking its sweet time to recover. I think part of the problem is that urine is a sterile fluid that cleans the vaginal area each time you urinate so when you suddenly stop doing that the warm, damp area becomes the perfect place for bacteria. The whole area down there is just absolutely raw and cut up… I try to remember to tidy up throughout the day and shower in the morning and night but some days I just get lazy or forget and then I pay the price. I’m going to my gynecologist this week and I’m hoping he might have some ideas for me.

I am also still adjusting to life with the stoma and the urostomy. The swelling from the constipation has made my stoma much shorter and it is even starting to recess into my hard tummy. Hopefully when I get that under control it will turn into it's dang near textbook perfect stoma. The area around the stoma is finally starting to heal but still bleeds regularly and then stings incredibly when the urine touches the fresh openings. On top of all that, it’s been really hot here in the Pacific Northwest lately which is making the skin under my wafer sweat, making the adhesive even stickier, making my skin even more irritated. I was able to cut the wafer down a bit to let the irritation heal but I obviously have to leave some so it stays on… Really all I can do is wait this heat wave out.

Lastly... I have had chronic nausea and vomiting for years but it is always much worse post-op and this surgery wasn’t an exception. I was so sick in the hospital I was refusing narcotics just hours after this massive surgery so my doctor decided to put me on an antinausea medication that other doctors had recommended I stay away from. I have had so many violent allergic reactions to anti-nausea meds over the years doctors are always pretty paranoid when I beg them to give me something for nausea and vomiting. I’m so thankful my surgeon wasn’t such a pansy and was willing to take the risk with me.

It’s been almost 2 months since I started on that particular drug with much success and I was so thankful to be pretty much free from the nausea and vomiting that has plagued me for so long.

That all changed yesterday. I took my usual dose of phenergan and dilaudid in the morning and within an hour my throat was starting to feel weird. I didn’t think much of it at first but it got worse every minute. Pretty soon it felt like an elephant was sitting on my chest and pushing his giant feet on my throat. I took Benadryl, threw on some clothes and then my husband drove me to the ER. Unfortunately I’m a pro at allergic reactions and know the routine. We got there and they got it all under control pretty quickly with some heavy duty drugs. After things settled down a bit I was much more scared of going back to life without the meds than the reaction I was having.

They said the drug will be in my system for 3 days and I have continued to feel my throat swell up from time to time so I have stayed on top of the antihistamines they prescribed as well as Benadryl. I can’t believe I’m not some kind of zombie but my body has grown such a tolerance to most oral medications.

So I’m dancing the recovery fox trot, two steps forward one step back. I am making progress and if I squint and tilt my head I can see a little bit each day but… I’m not going to lie and say it’s not frustrating and discouraging when I go backwards.

They told me this recovery would be 6 months to a year but for some reason I convinced myself there was no way that could be true. So here I sit, 8 weeks post-op and really disappointed that I’m not water skiing yet. *Sigh* Patience isn’t one of my strengths…

To end on a lighter note… We got our sweet puppy Maja 4 days ago and she has brought so much happiness, love and hope to our household! She has been perfect and in most ways it’s been much easier than I expected! Best of all she seems to love being here almost as much as we love having her here! The pictures don't do her justice! She is a sweet, well behaved, beautiful little lady! 

Our first night as a family of 4! 

She's the best snuggle buddy ever!! 

Titus agrees! 

me and my "kids"

Happy Girl! 

So pretty!

Just a boy and his dog

Not Just For Hobo's

I am known for my openness, as proven in this blog… Actually I am known for being too open at times, some might call me an over sharer. It’s been a lifelong problem that I’ve tried to combat but no matter how much I try I just can’t keep my trap (or typing fingers) on lock down. Most of the time it’s fine, actually usually it’s great. I think it’s this trait about me that makes me fall deeply, head over heals into friendships really quickly. I can think of several people that I’ve gone from stranger to bestie within a few days. I also think that’s what causes this blog to be so successful!

However this attribute can also have its downsides as well… Ask any man, and probably almost any woman, I’ve spent more than an hour with and I guarantee at some point I have made them uncomfortable by over sharing.

I probably would have had this issue of over sharing either way but once I was cursed with two diseases that are of a rather personal nature I was doomed. Think about the last time you were injured or sick? Did you text your bff and say “omg I am so over this cold #aintnobodygottimeforthat”? Or post on facebook, “I can’t believe I broke my foot the first day of summer break! You wouldn’t believe the agony of 18 crushed bones!”

We like to share our agony. I don’t know why. It just helps. So since the age of 12, when all my pain started, I have gradually grown more comfortable talking about dysfunctional body parts to people that really would rather not hear about them functioning or not and it has just escalated from there.. It’s not strictly medical over share… breastfeeding, body changes, underwear, relationships, whatever… Not much is off the table.

So that’s why I was surprised when I found myself in the depths of a new phase of recovery that I hadn’t planned for and was really uncomfortable talking about it.

This is a dark side of recovery that inexperienced “healthy” people just don’t understand. This problem is thought to be limited to street urchins and hobos lying on a bench reeking of cheap alcohol… It’s not a problem typically associated with slightly sunkissed, young, smiling, bouncy, suburban moms.

But here I am. (Yes I am bouncy, yes this is a serious blog... I'll try to keep the bounce to a minimum.) Dealing with something that is so much heavier than I am strong. I am having violent withdrawals from pain medication. My “drug of choice” is dilaudid, the strongest narcotic a doctor can prescribe for an outpatient. I am not addicted to it, actually I hate most things about it. I don’t want to take it. I don’t like the synthetic highs, mood swings, unexpected sleepiness or anything about it at all. Except that it relieves pain. I like that part. I have come to depend on it and therefore my body has become dependent to it. 

As my body heals from surgery and regains strength I have gradually needed less and less medication. So over the last few weeks I have reduced the dose amounts and frequency. I feel great, finally able to be myself… Not a doped up version of myself but my real self. My laughs are mine. My tears are mine. My bad moods are mine. My words are mine. I am finally seeing glimpses of the real, sober Deni and I love it. I love her. Unfortunately my body disagrees. It’s used to the drugs splashing through my system and it wants it. No matter what I think or tell my stubborn body, it’s not graciously giving up.

For a long time I saved narcotics for post-op or really bad IC and endometriosis flares but when my son turned one that all changed. He was all over the place! I wanted and needed to be with him. I couldn’t just bring him in the shower with me and offer him a boob anymore... Don't get me wrong, at one that kid was still enjoying his mama's milk but he preferred the drive-thru version (woop woop over share alert). He didn't want to entertain himself in the jumper or be plopped in the exersaucer anymore, he wanted to explore! The pain tried to rob me of that incredible time of his life but I wouldn't and couldn't let it. So I started taking a really low dose of narcotics to free me just a bit from the tight grip the pain had on me.

That was almost 2 years ago and over that time I’ve been through so much and I've taken a variety of medications and doses to get through the pain. As with everything else though, that all went to another level in December, when the real decline of my IC started.  I haven’t been able to go a single day without dilaudid since then. Most of the time I was still in bed in misery, the drugs just reduced the pain enough to keep me from loosing my mind. Some days it would surprise me by being more effective, pulling me back off the ledge to a place that I could tolerate the pain enough to live a shadow of the life I once had. As much as I hate those drugs they were, and are, the thing keeping me from being just a sick body in a bed. Those horrible little pills let me continue to be a Mom, Wife, Daughter, Sister, Friend, and so on... They may make me a slightly hyper, sad, crazy, chatty, tired version but they allow me to show up some what! 

Of course once I had surgery the pain was kicked up to another level, one that I didn’t even know existed. While I was in the hospital I was filled with drugs to the brim. The pain was assaulting and overwhelming but it was nearly unbearable once I got home and had to try to conquer it with just oral meds. I was taking around 8 2mg dilaudid a day but even still the pain lingered and held on for dear life.

I wasn’t ashamed about my narcotic usage. I had just been filleted like a fish, then rearranged like our family room (my Mom seriously has a rearranging addiction…Pretty sure she would have withdrawals if she tried to stop), and had vital organs removed.

As the weeks went by the surgery pain eased but that was just the beginning, I couldn’t just sit around. This isn’t a chronic problem anymore and to get to the other side of this long recovery I have to work for it. I was so incredibly deconditioned before surgery, my muscles were all weak and I was frail. On a scale of 1-4, 4 being as weak as possible, my physical therapist gave me a 3. After being chronically sick for 15 years and almost exclusively bed ridden for 6 months I could barely hold my own weight up to stand and walk. So once I got over the biggest hurdle of post-op pain I started going to physical therapy twice a week, started making myself do my exercises, walk and be as active as I safely could to strengthen and build up my endurance again.

The pain moved from deep inside where they invaded to my whole entire body. Each night I go to bed feeling like I worked out all day long. I'm doing more than I have in a year... which admittedly isn't saying much... yet the pain continues daily as I push my body. 

Although each day brings a new pain front and center. Some days and some pains are easier than others and it really is getting more tolerable... Which of course means I need less medication.

A couple weeks ago I formulated a plan. After gradually getting down to merely 3 a day I decided to stay on that for about two weeks. It was tough and the pain was exaggerated, I would have loved to take one more each day but it wasn’t horrible. The worst part was that every single pain was suddenly neon. Pain I didn’t even know I was having was suddenly all I could think about. A few days before this I was peeling a carrot and accidentally peeled a patch of skin off my thumb, at the time it stung a bit but I didn’t think much about it but suddenly my thumb was throbbing.  My body wasn’t used to dealing with pain on its own anymore. Between that and a few other little tinges it was hard but it didn’t take long for my body to be happy with 3 a day.

My pain continued to reduce so I followed my planned strategy, after 2 weeks I dropped down to 2 pills a day. I thought I was ready. I thought I knew what I was in for. I didn’t.

Every other phase of recovery has been intense but this is a whole different game. This has pushed me beyond anything I could have predicted. This isn’t just a physical battle. I am fighting this phase with my body, mind and spirit.

I was taking one dilaudid in the morning and then waiting as long as I possibly could to take the second one and then I just prayed for an early bedtime. But no matter how tired I was, my body wanted that drug, it needed that drug, and it threw quite the fit when it wasn't given what it requested.

A few nights ago was the worst yet. My body was begging me for a fix as it suffered through the withdrawals. I took as many other medications as I could hoping to trick my body into sleeping through the desperate cravings but it refused to be tricked and would not give in.

I laid in bed covered in sweat, my muscles twitched and jerked completely restless, my body ached head to toe, my incisions and stoma felt like they were brand new, my hands shook, I was violently nauseous, strong cramps rippled through my stomach, I couldn’t catch my breath and worst of all it felt like my heart was going to rip through my chest. My heart was racing, sending shooting pains down my left arm and each breath was ragged and labored.

I was so scared and didn’t know what to do. It was the middle of the night and my husband and Mom who take care of everything during the day were fast asleep. I started to dose off but as soon as I did I was deep in a scary realistic nightmare that felt so real.

Finally at 1am when my eyes were burning begging for sleep and my body was exhausted from the turmoil but wouldn’t quit... I gave in. I took a dilaudid. 

I felt like such a failure. So many people have told me how brave and strong I am throughout the last 6 months but I always brushed it off because I thought if given the choice I would take any easy way out if there was one. I had just proven myself right. I wasn’t strong and I was barely a fighter... I had been tested and I failed. I had fallen off the wagon. I was no better than those scary, desperate addicts on the street starving for a fix.

Or so my rock bottom confidence led me to believe... 

After years of debilitating chronic pain and weeks of severe recovery pain that I couldn’t do anything about, I finally had an ailment I could control. I abused my power. I used it to stop the agony and the horrors. All I had to do was take the medicine my body was pleading for and it was over. I tried my hardest to be strong and to get through it but I couldn't. 

I knew I was going to have to go through it eventually, I knew I had already made progress and I knew I was going to lose the momentum from all the work I had already done but in that moment… In the literal and metaphorical pitch black… I didn’t care.

My shaky hands searched for the right bottle on my nightstand, I took it and waited for it to settle my body’s tantrum, and sure enough I felt better and was asleep in no time. 
  

I woke up the next morning in more pain and so discouraged but I knew I had to take the medicine.

That day I had physical therapy, the next day was busy with 4^th of July celebrations, then we went to my Grandparent’s cabin (the best place on Earth) , then yesterday was a busy and fun summer day at home doing summer time chores- including stocking our freezer with delicious (if I do say so myself) raspberry jam! I wouldn’t be able to do any of that without taking dilaudid 3 times a day.

I FINALLY feel up to living again. I FINALLY feel up to cooking!  I FINALLY get to play outside with my husband and son instead of just watching from the window. I FINALLY get to go to family gatherings rather than being left at home alone. I FINALLY get to feel the sunshine on my skin! I FINALLY get to watch my son experience new things! Those things are nothing to a "normal" person but to me it's like climbing Mt. Rainier and it feels great at the top! 

Although what comes up, must come down. It's not easy. You wouldn't believe how sore I am at the end of a day doing minor tasks. There is still so much I can't do. I have a long road ahead of me... 

But the little things I can do, I revel in them. I try to appreciate each ache and cramp my muscles feel as they develop because that means I'm on my way to this new life that I decided was worth putting myself through this hell on earth recovery for.

None of that would happen on just 2 dilaudid a day. I am just not ready. There is still too much pain to be able to function without the drugs and I’m not willing to sit in bed, just waiting to feel better… I am going to get up, work hard and LIVE.

This is such a hard part of my recovery. I want my new life so badly but the pain, head to toe, is still raging. I am using the tools I have. Call me weak or a quitter but personally, I think if I was lying in bed and intentionally not pushing myself so that I wouldn’t have to take more narcotics that would be so much worse. This is short term. This is temporary. I WILL make a full recovery from this eventually and will finally be rid of the meds when the time is right. 

I just have to remember that…

There is no hurry to get through this or to get completely off of the dilaudid. I will continue to take my time and make conscious decisions about when I need to take it. I will push when I can and rest when I need to. I will keep supplementing with as much Tylenol, Ibuprofen, Benadryl, Valium and anti-nausea meds.

Most of all… I am going to continue to dip my toes into this new life that I didn't even know I could hope for a year ago. For now I will take my 3 a day and I will pat myself on the back for getting down to 3 from 8 in just 6 weeks. 

I'm sorry this blog is so convuluted... It took me a really long time to write because I was so afraid of judgement and disappointing people. I wanted to explain why I took the narcotics to begin with, how it got out of control, and now how I'm slowly weaning. It's a serious topic and one not to take on lightly, I'm thankful my braid isn't addicted like my body is and I wanted to express that in the right way... It's a lot to stuff into a blog written by a bouncy girl from a small town that usually makes light of the hard stuff. I love my readers and I felt compelled to share this horrible, seemingly impossible stage of my recovery. I'm sorry it's choppy and fluffy... Please love me anyway. I promise, a bouncy and fun blog that has good structure and flow will come out of me some day... 

I will say... As I prepare to click the big "PUBLISH" button I have a sense of relief getting this out there. The sad and scary truth underlying all this... I will have to get through the withdraws some day not too far away and I will need my amazing support system without worrying about being ashamed and embarrassed of my struggles. 

Now. Here is some photo evidence of the life I am FINALLY starting to lead and the reason I can justify taking the medicine that has its major flaws but gives me life. Who WOULDN'T continue doing whatever they could to enjoy this life?! 

Do it all for this boy. My heart. My soul. My love, Titus James. 

Cooling off redneck style... 

Relaxing in the shade with this handsome boy

I thought I was taking a selfie of me and Titus eating fudgesicles but he left... 

Oh! There he is! 

On the forklift with my boys!

4th Of July! 

When you live in a small town, you sit on a sidewalk and watch a parade on the 4th of July and you love every moment. 

I look happy. 

Teaching my little guy how to properly roast a marshmallow 

Telling him something... 

He apparently doesn't want to hear it...

But he loves me...

He is the kissy-est boy that ever lived. Love every sticky, sloppy one I get! 

Playing "Old Man Horseshoe" with my Grandpa! Love this.  

Love that Titus has a cousin so close to his age! 

Love watching them grow up together!

My boys.