Wednesday, August 27, 2014

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… 

Thursday, July 17, 2014

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! 

Monday, July 14, 2014

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

Monday, July 7, 2014

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 4th 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.



Wednesday, June 25, 2014

I Found Hope...

The last two blogs I wrote were pretty superficial, not really detailing the nitty gritty side of the recovery from the radical cysectomy, a total bladder and urethra removal, I had just over 5 weeks ago. I wrote about the actual surgery and then all about the things I need to do and maintain now that I don’t have a bladder. I wrote those blogs truthfully but I definitely sprinkled some glitter over the really hard parts. 

As difficult as this will be for me I know I need to open up and tell the rest of the story... After I posted the last one I was bombarded by questions, comments, and even praise but it was more than I could take while I was still deep in the murk and mire of the recovery.  

I thought I was prepared for the intensity and extremeness of this recovery but I didn’t have a clue. I have had 29 surgeries before this one… Each surgery and recovery was different but they still followed a similar pattern and recovery “style” but this one threw everything I know about surgeries and recovering straight out the window.

Usually I lean heavily on the support of my ginormous family and few good friends. I usually spend a couple days sleeping then I want all the distraction and company I can get. I chat on the phone, I have visitors over, and I just recover in the midst of the regular going ons of my family.

I knew this one was going to be different and obviously no other surgery had been nearly as serious as this one but I figured I would still follow that pattern pretty closely.

Not so much.

Including in-laws and extended family I have over 100 family members that I consider myself close to, people that I could tell my deepest secrets to (I guess telling 100 people would disqualify them from being deep secrets (I’m a horrible secret keeper, even my own aren’t safe)). Usually these family members- through blood or law- are a huge part of every area of my life, especially my illnesses over the last 15 years.

After this surgery, my love and trust of them didn’t fade but I was in this recovery so deep I could barely deal with it on my own… I couldn’t bring anyone else into it. I had to hunker down and I had to tell myself to breathe every few seconds, I had to remind myself I did this for a reason, I had to pray- sometimes several times in a minute, I had to sleep, I had to eat and drink, I just had to get through this.

The funny thing about being loved so completely by so many people is that your pain causes a lot of others pain. I can’t explain it more than that. I just know when I was at a place where I could barely handle my own pain I just couldn’t bear the weight of anyone else’s.

So. I pushed everyone away. I kept a little group of less than 10 people that I opened up to a bit but I still kept a pretty tight lid on things. It was only when I was with my husband and my Mom that I could totally let my guard down. I saw the pain in their eyes as I moaned in agony, as I sobbed when I saw the grotesque changes to my body, and when I dry heaved after hours of vomiting every ounce in my stomach. They didn’t just watch me recovery, they felt every pain- both physically and emotionally- with me. As much as I hated hurting them through my own hurt, I needed them. Selfishly, it was helpful to share some of the burden but I hated hurting the people I love most. 

I posted regular updates on facebook and would answer texts as my consciousness allowed but I barely wanted to talk on the phone and had very limited visitors. Even when I did talk to them I never really let on how bad things were... So not many people know the severity of this recovery. 

For many reasons I feel like I need to share some of that with you guys but unfortunately or fortunately, depending on who you ask, now that I'm on the other side of the pit of misery I will never be able to fully explain it. Still, I need to try. So... here goes nothing... 

The day I got home from the hospital was a long day but I didn’t care, my Mommy adrenaline kicked in and I wanted to gobble up my 2 ½ year old son, Titus. I hadn’t seen him in 8 days and he was just as luscious as I remembered but I couldn’t believe how much he had grown. I had never been away from him that long and I wanted to gather him into my arms and just breathe him in. But the pain. Oh the pain. After just giving him a little hug and kiss I was out of breath and positively exhausted. 
My Mom helping me walk into the house! So glad to be home! (The thing tied around me is the gait belt you'll read about below) 
Titus was so excited I was home!
I missed that boy sooo much!!! Oooh that smile!!
I used my walker to get to the bottom of the stairs and then I looked up at my Mt. Everest. I couldn’t believe I had to climb those stairs. The stairs in our house are slippery wood, really steep and there are lots of them. I started out going slow and taking deep breaths after each one but the pain was worsening and I decided to just get it over with. So I charged (okay I didn’t charge but I turned my speed from turtle to… well I can’t think of a slightly faster animal..) up the last few and then straight to my big, cozy bed! Just the sight of the thing made me feel a bit less tired.

I was thrilled to be home but I was exhausted from the work of getting discharged, the long ride home, and then the trek up to my room so as soon as I was dressed in my favorite nightgown and tucked into my bed wrapped in fresh sheets and thick blankets I was asleep.
So happy to have my little family together again!!! 
I woke up to throbbing pain. I quickly realized this whole “home” business wasn’t as great as I remembered… I didn’t have the option of IV drugs or a nurse who kept me on schedule by bringing me my oral meds when they were due. Before I knew it, I was behind my pain and that thing was a steam engine that I couldn’t catch up to.

The next day I continued to battle the pain. It fought a really good fight. No matter what weapons I brought, nothing could conquer the pain. Then I started having crazy itching under the wafer, (see last blog, Carry On Baggage, for more details about the urostomy system) I tried to ignore it but it just got itchier every minute. I knew that meant I was allergic to the wafer that I had chosen. I had a slight melt down but thankfully I got a hold of the urostomy nurse and she ordered a bunch of samples of other kinds for me to try but she said they wouldn’t be here for a couple days. In the mean time she suggested that I cut off as much of the adhesive as we could without it falling off.

The problem was... That meant removing the one I had on. The urostomy nurse came to my room twice while I was in the hospital to give us instructions on the care of the system. Unfortunately, both times I was totally out of it but luckily my husband and my Mom were each at one. So I had to rely on their memories to care for it. 

One time when I was in the hospital there was moisture around my wafer so the night nurse decided we should just change it. She ripped the wafer off of my skin, grabbed a towel and wiped that thing like she was a shoe shiner! Oh it hurt so bad, I wriggled around in agony as she cleaned it up before putting a new one on. Despite the darkness of my room I caught a glimpse of my stoma and it was positively repulsive. It was the first time I saw it. I just cried. The nurse “comforted me” by telling me very factually that it looked like a pretty good stoma, it could have been a lot worse and that it was normal for me to have a negative reaction the first time I saw it. Helpful.

I made myself stop crying so she would leave my room and leave me to feel bad for myself alone. Then I cried some more, a lot more.

So when I was home and I knew we were going to need to change it I was terrified. The home care nurse was coming the next day so I convinced my Mom and husband that we should just wait until then so she could check it out before reapplying the wafer and bag.

The next morning the nurse arrived… She was a nun who barely spoke English. I should have been prepared for some pain. She started the process by prying the wafer off of my skin using alcohol wipes, which felt just about what you would imagine pouring alcohol into open wounds would feel like. Once she got the thing off of me my skin was bright red and angry, it had open irritation in some spots and was covered in welts. When my husband realized she had used the alcohol instead of the adhesive remover he took over and cut the wafer leaving just a tiny edge of adhesive on and then he wiped my poor, sad skin with the barrier wipes. I didn’t look. I just laid there covering my eyes while my husband and Sister Mary Clarence (that wasn’t her name but the only nun I know is from Sister Act…) tended to me. 

My husband was wonderful, while I laid there covering my eyes and holding my breath from the pain he told me it looked great and that it was getting smaller every day, he said it didn't bother him at all. I don't know how much of that is true but either way... It was exactly what I needed to hear. 

Once everything was reattached I quickly covered myself up and was happy to be done with it for the time being. However… Even with trimming off most of the adhesive my skin was still really irritated so when the package arrived with new samples the next day I knew I had to change it.
I decided I would try taking it off in the shower this time. It came off fairly easy but it was much harder to avert my eyes… When I finally peeled the sticky wafer off of my horribly irritated skin I accidently looked down.

Oh what a sight… My stomach was still really swollen from surgery so it made the stoma look like a tiny bright red hill inside a giant valley. The skin around it was covered in rashy welts. Worst of all… brace yourself… it was covered in thick mucus that looked like mayonnaise that had been sitting out in the sun… The smell was repulsive and I couldn’t stop gagging. I looked away and held my breath then I used the hand held shower head to clean my belly off but that just revealed my stoma- a huge, red, wrinkly wet piece of intestines outside of my body- straight from a horror movie. 

In between gags I verbally assaulted my poor abdomen until the frustration turned into a deep sadness and suddenly I was sobbing. My Mom, who was getting the new supplies all ready, came in when she heard me. She started crying too, feeling my pain just as I felt it, and she told me she couldn’t imagine how I was feeling.

After my Mom settled my sobs, like I settled Titus’- with love and understanding, I finished cleaning up in the shower while forcing myself to look away and then got out to get everything reconnected.

The new wafer worked perfectly on my skin and so far I haven’t had any issues with it. The stoma has continued to shrink a tiny bit each day and now I can look at it without much thought. It’s starting to become a part of me just like my stretch marks and sun spots that have shown up over the years. I don’t like them but I accept them. Every so often it burns and when we're changing everything I can see the edges of my skin around the stoma sometimes bleeds so I think it's the urine getting into the still healing skin that stings so badly. Overall... that side of the recovery gets better each day. 

The mucus still disgusts me. I hate when it gets stuck in my bag, clogging the drain and I have to force it out. It is from my illeal conduit, the illeal’s previous job was to help break down and move along solid waste so even though it’s been promoted it still producing the mucus and making my urine reek. 

It's also an interesting challenge each time I go to get dressed.. Aside from the family of birds that has taken up residence in the attic right above my closet, man I hate birds... I never know what is or isn't going to work with my urostomy bag. It's all trial and error at this point. I've nailed a couple outfits down but some are still in the discovery process, some things- like jeans- I haven't even tried yet, and some things just don't work! I thought I had a hard time finding cute comfy clothes before but now I have way more variables that I need to factor in every time I get dressed.. 

Anyway, the days went by and the recovery progressed at glacial speeds. I’m sure there were improvements happening each day but I was just generally miserable all the time. I had a bad case of “upstairs fever” a week after I got home. The stairs were daunting so I took my walks around the upstairs hall (still leaning heavily on my walker) 3 times a day but for the most part I was just in bed but I couldn’t take it much longer. So we made a plan... Operation Socialize Deni.

A good friend of ours gave us a cozy leather recliner and it wasn’t far from the bottom of the stairs so it was just the stairs that were the problem but I had to try it. So we tightened up the gait belt (a soft belt that went around me that someone held onto while I walked in case I started to fall) which my husband held onto with all his might (and the man has a lot of might) and my mom walked in front of me. It actually went pretty smoothly, I was down the stairs in no time. Then I used the walker and made my way to my recovery chair. I felt normal for the first time in 2 weeks! I couldn’t do anything except sit in the recliner but I didn’t care, just being downstairs and getting to be a part of the craziness was just bliss.

In the recliner and so happy to be downstairs! 
It was a gorgeous day so a few hours later we recruited my sister along with my normal team and my walker to help me get outside to eat dinner. I didn’t eat much and was exhausted pretty quickly but getting some sunshine and being able to be with my family was totally worth it! I felt like things were going really well for 2 weeks post-op and I was so encouraged and reassured that I made the right decision to have the surgery.

Outside enjoying a bit of sunshine with my sister and Cheetos finger Titus! 
Two days later, that all changed. One of the hardest parts of this recovery has been my intestines adjusting to their new arrangement without the bit the doctor recruited for my conduit. Just two days after surgery the diarrhea started and ever since I have bounced between constipation and diarrhea. Sometimes within minutes it will turn from one to the other. It’s a month later and I STILL haven’t found the right balance of stool softeners and laxatives that make it easy to go when I need to without going to the other extreme. The side effects from this piece of the recovery puzzle has been brutal. I won’t go into too much detail but I’m sure you can imagine…

I was sitting on the toilet after severe cramps told me to go there. I wasn’t sure what I was in for and wasn’t even really paying much attention when suddenly I felt a rush of fluid. It actually took me a few seconds to remember that I wasn’t supposed to be feeling anything like that anymore. I immediately stood up and freaked out when I saw blood pouring out of me, where my urethra was a few weeks before. 

I went back to bed and sat on a towel that was quickly drenched with a mix of fluid and blood. Each time anything came out pain rippled through my whole entire body. It was indescribable white hot pain. We called the doctor and they reassured us that some “discharge” was normal. We tried to let that reassure us but it didn’t. The next thing I knew I was vomiting and had a high fever. My home care nurse came out to visit me and my blood pressure was 85/55 and my pulse rate was faint, irregular and over 100 so she called the doctor and asked if they could get me in or if I should go to the ER. Thankfully he was able to squeeze me in… We found out I had a hematoma, which meant there was blood outside of the vessels (in the hospital I had a JP drain to get rid of the excess blood and fluid and they thought they got it all but clearly they didn’t). So the empty little tunnel that was left after they removed my urethra, which they had plugged up then stitched shut, ruptured. The combination of the pressure from the extra fluid, doing a bit too much (going outside and taking a short ride on the golf cart to visit our cows) and some unconscious straining during the bowel movement was too much for it.

Fortunately it wasn’t a major set back and although it was excruciating, there was nothing they could do. So we just had to wait and let my body heal itself.

My body shut down so it could focus on healing, I couldn’t stay awake for more than an hour or two for the next few days. Every so often I would wake up in a puddle of sweat and my fever would be gone but then before I knew it I would wake up shivering and it would be back up. Finally 3 days after that whole mess began things started to improve, although the pain in my pelvic floor was still staggering.

After that I stalled again. Except I was having the opposite problem... I couldn’t sleep- I had been on all the meds for so long they actually started having the opposite affect and kept me from getting good rest. The pain was constant and severe. I couldn't sit at all because the pain in my who-ha was so intense. I was still really unsteady so I couldn’t walk without the walker and someone close by and I could barely stand at all. I was dehydrated from vomiting, having diarrhea, and from just not eating or drinking because of my upset tummy. It felt like I was never going to get better. 

I was so tired and grouchy. I couldn’t deal with anyone. I didn’t want anyone to come visit me in my room- even my precious baby boy (one time he was in my bed watching a show with me when suddenly I started vomiting and I hung my head off the side of the bed so he wouldn’t see me throw up, there was no way I could deal with him taking on some of my pain) and I slept as much as I could. Yet I was also really lonely. I didn’t know what I wanted, just like I knew I was starving and had to eat but I couldn’t think of one single edible thing in the world that didn’t repulse me.

I know there were shimmery moments that distracted me from the pain and suffering for times here and there but for the most part I just went through the motions of trying to stay alive even though it would have been much easier to not. Don’t get me wrong, I wasn’t suicidal… I was just so incredibly discouraged. Every day I deeply regretted my decision to have the surgery but I didn’t dare let on.

Everyone was constantly going on about how brave and strong I was, what a great attitude I had, I was an inspiration… I really wasn’t. If there would have been a way out I would have taken it no questions asked.

People wanted to know how my IC pain was and they couldn’t stop telling me everything would be worth it when I was living my new normal life that would apparently be here before I knew it… I hated that. I had no idea, actually I still have no idea, which pain is temporary and just a part of my recovery and what will linger for months or years and frankly, I didn’t give a hot buttered biscuit about some future Deni that would be so thankful for all that the present Deni was going through. Future Deni is a jerk and past Deni is a whiner. I didn’t even know what I was talking about or who I was any more. I just had to keep going.

I was so frustrated with the way things were going, I was just done physically and emotionally but it wasn't going to get better on it's own. I had to take this recovery process on and in order to do that I knew I had to kick myself in the toosh and get to work. I wasn’t going to magically recover. This recovery required me to push myself and be uncomfortable. I had to do my physical therapy exercises, I had to walk, I had to make myself eat and DRINK, I had to go downstairs and be a part of the family again. I couldn’t use my “I can’t sit” excuse. So with some team work my family set up an air mattress that was easy to get in and out of downstairs and even though I was still laying down the majority of the time, it got me out of my “sick bed” and therefore my sick mentality.

Snuggled up in my nest downstairs!
I wasn’t sick anymore, I was recovering- two extremely different things that needed to be treated and thought of totally differently. The problem is, I've been in the chronically sick mindset for 15 years and I couldn't just switch gears in a day but I had to work on it. 

Just when things were starting to look up again the pain in my “urethra” continued to get worse and worse. One night I woke up to an intense stabbing pain and pressure. The pain took my breath away. I didn’t know what to do so I woke my husband (which I never do because he sleeps the sleep of the dead) and handed him a flash light and told him I needed him to look at my who-ha… In his still slightly comatose state he confirmed that there was definitely something down there, he said it looked like a bump and a stitch. Before I could ask another question he was back to sleep. I decided to do some investigating on my own and felt a hard lump, like a sharp rock, right at the entrance of my vagina. The pain continued to soar and no matter what meds I took I couldn’t even sit still with the stabbing pain. The only thing I could think of to do was take a shower… It’s been my go-to remedy for any pain for so long I couldn’t stop myself. It was then 3am and in my desperation I called my Mom who came up and helped me get in the shower and waited until the pain eased a bit then she helped me get back to bed. Eventually the combo of meds and exhaustion kicked in and I slept for a few hours.  

The next day I went back to my surgeon to make sure everything was okay… 

He said it was all swollen and irritated in my whole pelvic floor area and the bulge and stab I was feeling was where he stitched things up (it made sense once I remembered the vagina’s ceiling was the urethra's floor). He thought the trauma from the whole hematoma/ urethra rupture ordeal and excess swelling was causing extra pressure and therefore excess pain. He told me to get on a cycle of ibuprofen and keep up the good work…

I was so mad. All that for nothing. Every time I started to feel like I was maybe doing a bit better something dramatically horrible would happen. I just felt like it was never going to get better. I even posted on facebook that I was pretty much out of hope.

Thankfully my support system is fierce. Several people encouraged me in different ways but one letter from a dear, old friend was the first yank out of the pit of hopelessness and others took turns pulling until I was back to the surface.

Truthfully, I had been pretty lax when it came to keeping up on the ibuprofen and Tylenol, with my nausea it is always really hard to take oral meds at all much less when I didn’t think they were helping but I was desperate. So I decided to get myself on a schedule and actually the swelling went down which thankfully relieved a lot of the pressure pretty quickly. That, or it had nothing to do with the dumb medicine and it was just God giving me the break I desperately needed and so many were asking for on my behalf. 

Then finally last Monday, exactly 4 weeks after surgery I woke up with some pep in my step. Something felt different… The pain was still there but it didn't take my breath away. Over the weekend I had been able to get up and around more, I was eating a little bit more each day, and I was getting stronger so I could start doing things for myself.

I looked in the mirror and I saw myself! What a huge day that was for my recovery- mentally and physically!
That same day I started outpatient physical therapy and I came home so encouraged with my progress. Don’t get me wrong… it was pathetic… I lifted a hollow PVC pipe 10 times and my arms turned into noodles but it was progress. At that point I didn’t care… I just needed to know I was moving forward!

I was excruciatingly sore afterwards but I knew the old saying… No pain, no gain. She also gave me some things to work on at home, one of which I have been thinking about a lot. She wanted me to rub my belly. My incisions are crazy sensitive and the lightest touch feels like rubbing a fork on freshly sunburned skin but also I think years of chronic abdominal pain makes me very protective of my tummy. I need to teach my body that it’s not always going to hurt when anything touches me or when I move for that matter. 

Since then, I have continued to progress pretty quickly! Over the weekend I was able to enjoy some time with my family, get out and do some errands, enjoy a perfect summer day and I even got to cook a little bit! Last Thursday at physical therapy I rode the stationary recumbent bike for 3 minutes (so slow it didn't register that I was pedaling for a whole minute) and walked just part of the sidewalk then yesterday I biked for 8 minutes, reaching over a mile and then walked around the building (it's a pretty small building but that's twice as far as I was able to do just days before!) Granted... After physical therapy yesterday my limbs were so weak they actually gave out and I ended up falling but it's amazing that I have the stamina and strength to progress so quickly that I'm making things collapse! I've been chronically sick for 15 years, basically bed bound for 6 months and I had major surgery 5 weeks ago... I'm impressed if I do say so myself...

But best of all... As the days have gone by I have realized something miraculous... Every pain and every symptom of IC that I battled hard for 15 years is...
.....
....
(I'm building the anticipation..)
...
..
.
..
...
....
.....

Gone. 

It scares me to even type that... It feels like it's too good to be true but it really is the truth... It's gone! 

Don't get me wrong... I still have a lot of recovery pain- varying levels of pain deep inside, pulling and pinching here and there, my incisions are still super tender and sensitive, my whole pelvic floor is really inflamed and painful- I can only sit in certain positions and on certain chairs and even then I can't sit for long, my whole body is weak and easily exhausted and my digestive tract is still trying to figure out it’s new route. I'm still taking quite a lot of medication and will have to gradually reduce everything so my body doesn't have violent or dangerous withdrawals. Clearly I still have a long way to go, they don’t say 6 month recovery for nothing…

But... Come on! So exciting, right?! I mean I think so... Actually... I think I'm still in shock or in disbelief because I just feel anxiety and fear when I think about my IC being gone. I feel a glimmer of anticipation and possibility but so many times I have felt that only to be crushed pretty quickly... 

I don't know what pain and symptoms will gradually get better and what might take the whole 6 months to really improve and what might always hurt but the old stuff is no where to be seen and the recovery side of things improves a tiny bit each day! 

Reading this over again I am disappointed that I wasn’t able to get even close to describing the hell I lived in that month after surgery or the complicated emotions I have, and am still feeling. I wish I would have written some things when I was in the depths of it but as much as I love my blog and my readers... Documenting those horrors was the last thing on my mind! I have never been pushed harder emotionally or physically. 

But maybe it's good that I can't describe exactly how horrible it was because now I'm in a totally new phase. I have to switch my brain from chronic pain mode to recovery mode. Instead of figuring out new ways to maintain pain and symptoms, I have to find the balance between pushing to strengthen and grow without going too hard and setting myself back. I can't lose sight of all the work I have to do but I have to notice all the accomplishments that seem little at the time but add up to create a complete recovery. 

That's the biggest thing of all... I have to focus on my new, healthy life that is coming! Not just a recovery from this surgery but a recovery from interstitial cystitis. 

My Grandma , who’s 87, went through some major health issues right before all of my problems started unraveling in January. I made a bunch of freezer meals and stuck little notes of encouragements in with them. She and my Grandpa came over the other day to celebrate Father’s Day and she gave me a card and then said something like, “someone very special gave me something when I was getting ready to go through something scary and unknown” I knew what she was about to hand me and I started crying instantly. 

She handed me the stack of notes I had written for her. She specified that she wanted them back and I could just borrow them. I could barely talk about it because I knew I would lose it. Later, when I was alone and feeling strong I read them. If I can get through the rest of my recovery with ¼ as much courage, strength, dignity, and joy as my Grandma got through her battle then I would be blessed indeed. 

Here are a few of my favorites... 

“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow!’” – Mary Anne Radmacher

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.”- Eleanor Roosevelt

“Every day may not be good but there is good in every day!” –Author Unknown

“Do not fear for I am with you, do not be afraid for I am God. I will strengthen you, I will help you, I will uphold you with my victorious right hand.” – Isaiah 41:10

I read those notes several times but the last few day's they've stayed safely tucked in an envelope in my nightstand. This battle isn't nearly over but I think I'm winning! Funny how I wrote those things to a woman that I knew was stronger than she thought she was… Makes me wonder…

Anyway, I’m on the road to recovery! I think I’ve finally gone over the last hurdle and I’m hoping it’s smooth sailing from here on out! I will keep up my physical therapy twice a week, counseling once a week to help me through this huge life adjustment, and every day I will continue to push myself to be the best version of myself in each stage of this recovery. 

Another little thing I want to share with you all... Our little family has been waiting for a long time to get a puppy. It's been a dream my husband and I have both had but it seemed pretty unattainable over the last few years as my IC declined. My Mother-in-law breeds Golden Retrievers and each litter we would visit them and resist the temptation to smuggle one home in the diaper bag but it was never the right time for our family. 

But the first thing I remember my husband saying to me when I woke up was that his Mom's dog had her puppies while I was in surgery. That couldn't be a coincidence! So between that "sign", our sons complete adoration for dogs, and my amazing recovery progress we decided that now is the time. We all met and fell in love with one little pup in particular and she has our hearts already! We still have 3 weeks until she can come home but the planning and anticipation is almost as exciting! 

I know this might seem crazy to get a dog right when I'm starting to recover but I think having her will push me even more. She is pure love and joy, she brings us all together, and will force me to walk and get outside. 

More than that, she will be a part of the new life that is fast approaching that I never dared to dream I could have. She is a furry, happy, potentially destructive symbol of our new life that I fought so hard for! 

So dear readers, please meet the sweet addition to our family, Maja! (pronounced like Maya) Since she was born and I had this life changing surgery in May and my husband (and obviously our son) is Croatian we thought the name that means May in Croatian would be perfect! 

Does it get ANY more precious than this?!? Come on.... 
Me and my girl! It's about time there's another girl in the family! 
My husband just adores her already! 
A sample of what her life will be like! 

 Who knows the adventures the 4 of us will have!! I can't wait to really begin this life. I hope to never take a single moment for granted! 

DISCLAIMER: I am super excited about all the potential my post-op, post-recovery life has for me but I want to really stress the monstrosity of this whole thing. I did not make this decision lightly and it was 100 times worse than I could have imagined... and that's with my surgery going perfectly and having very few complications in the big scheme of things! So those of you with IC please don't see this as an easy out... It's not easy and it's not an out. I will never live a normal life and I will always struggle in some ways because my body is now not how God intended it to be. I battled IC for 15 years and it wasn't until my bladder was in total retention and stopped functioning that I even began considering this. Please get opinions from at least 2 doctors and thoroughly talk about your options, potential risks and side effect before you even start thinking about this.