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.  

6 comments:

  1. Good Lord girl that had me in tears. Just when I've been thinking I can't take any of this anymore I find your post! You give me courage. Prayers for you and your fight to recover!

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  2. Deni you are such an inspiration to young and old! I love that you don't sugar coat anything, people want to know what to expect and you have given them a glimpse of what life is like for you..dealing with IC. Can't wait to hear about your next chapter...life with Maja!

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  3. It is truly amazing how different the surgery and recovery can be for each of us. I had the open abdominal surgery with about 5 inches of stitches and yet, 6 days post-op, I drove myself 25 miles home from the hospital. I never took another pain med, my pain was a 1 when I got home and never got worse. I'm so glad you're seeing the end of the tunnel and that the absence of IC pain can be celebrated as well. The complete shift from being sick and being obsessed with your bladder will take some time as well. Big hugs from me! I know I made the surgery sound easy, and for that, I'm so sorry it wasn't for you!! Cheers! Heather Har-Zvi

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  4. Please keep the blogs coming! You give the rest of us hope!

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  5. my GOD... your story has mesmerized me. thank you for sharing your experience, strength and hope...

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  6. I am sitting her at 4:00 A.M. with an IC flare and have been up all night. I stumbled upon your blog and have been reading for 2 hours with tears streaming down my face. I can't thank you enough for all that you've shared, it truly makes me feel less hopeless and alone. I pray for your healing and that you'll be able to be the mom you've dreamed of because frankly, that's what I dream of too. <3

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