Showing posts with label interstitial cystitis. Show all posts
Showing posts with label interstitial cystitis. Show all posts

Wednesday, November 18, 2015

10 things people with IC want you to know!

We moved a few months ago and we've had to had the pleasure of meeting a bunch of new people. It's always so awkward for me because my illness and pain are so much a part of my life but it's all a little too much info for a first introduction… So I do the modest, polite thing and wait until our 2nd meeting. 

Then I started to get to know people better and they must have confused me for someone else or maybe nodded off while I was rambling on and on about the inner workings of my new urinary tract because they actually wanted to get to know me and even become friends. It's very strange. I'm thinking maybe I should write a letter to the mayor about getting the water tested here...

Anyway. These new friends of mine have been wonderful! So loving and accepting of all my weird things- physically and personally. However I have realized I feel the need to recite some warnings and disclaimers at the beginning of these relationships and I thought maybe other people with IC or other chronic pain/ illnesses feel the same. So rather than us constantly reading the rights to these poor, unexpecting friendly people over and over I thought I would put together a list of the 10 things we want others to know about being in any kind of relationship with us… Feel free to share and use for your own people mining. 

10. Please don't mention how we look unless it's ravishing then simply say “you look ravishing”.

Definitely do not say “wow you don't look very  good” OR EVEN “you don't look sick!” Although IC is often described as an “invisible disease” and people love to point out how not sick we look, we hate that. We push ourselves to remain cheerful amongst the highest level of pain and when people happily diminish that based on our smiling faces it makes us want to never smile again. After we punch YOU in the face. 

Look at me. In the hospital, super sick with a kidney infection smiling and throwing the V for Victory... Even though our beloved USC Trojans lost that game... 


Of course sometimes we’re exhausted and miserable making us clearly look sick, no need to point that out either. 

What a lovely example of me looking sick... And also like I murdered an entire nest of baby birds and enjoyed it. 

As far as clothes… We want to dress cute and normal but our whole entire pelvic area is so sensitive that anything even slightly tight or stiff is unbearable. Leggings becoming trendy was an exciting fashion time for those of us who feel like belted snowmen after a fresh snow storm if we wear jeans. We are pretty much left with sweats, yoga pants, leggings, and dresses. 

Don't question the level of formality based on our outfits. Ever. Sometimes we’re in so much pain that even baggy husband sweats are too much pressure and we are forced to wear dresses. No we're not going anywhere. Yes we clean up nice. We know. Thank you. On the flip side sometimes we wear sweats to a party because that's all that we can manage. We know we look like a scrub (I can't think of the last time I used that word and I'm just downright nostalgic about it now.) but just be happy we're out of bed. Thank you. 

This is me. In pajama pants with tiny martinis on them, oversized sweatshirt and my hubbys boots. At Walgreens. 


In a dress. At the river. 
Also, we rarely wear makeup or do our hair. It's hard enough to just get out of bed and maybe even, but not guaranteed, shower. Unless it's an occasion where gifts are exchanged or luxurious food is consumed don't expect much. Yes, I make most important decisions based on food alone. 

Which leads me to… 

9. Most of us with chronic illnesses, especially IC, are on strict diets. Don't push us to “splurge” or “treat ourselves”. 

We're not trying to lose weight (more on that topic next), we mean our irate bladders cannot handle any added acidity. If you truly care then take the time to study the IC diet list and memorize it but I always like to say if you wouldn't want it to drip into an open wound then we probably can't eat or drink it… Tomatoes, citrus, alcohol, spicy foods, etc… Don't take offense if we don't eat your bountifully fresh caprese salad or do a shot of tequila with you at your bachelorette party.(Some of us, including me, are exceptions to this rule but it's a big one for the majority of us!) (I mean the entire diet point not specifically the tequila…) (I feel like I didn't make this clear... After my cystectomy I was allowed to eat whatever I wanted, including but not limited to tequila.)

My first legal orange!
Oh one more thing on that topic… FOR THE LOVE OF GRAVITY PLEASE STOP TELLING US TO DRINK CRANBERRY JUICE. It not only doesn't help, it's a huge trigger for us! Thank you. 

8. We are fat, skinny, swollen, starving, sickly, plump… It's not our fault! 

We've all struggled with weight in different ways thanks to our disease. Most of the medications prescribed for IC, and other chronic conditions, have the ever frustrating side effect of weight gain and increased hunger but if we find something that helps we'd rather have thighs that look like the gelatinous goop that is carved off of a cold, fatty slab of beef stuffed into patty hose (hello visual…) than any symptom that could be otherwise controlled. We will always choose a medication that helps symptoms long before the hope of a svelte figure. Sometimes our weight gain in simply caused by being stuck in bed with only ice cream and Cheez Its as our companions. Either way. Our increased weight is not at fault for our miseries. I would strongly urge you to consider how much you would like to be tied to the back of a car and forced to run behind it before ever mentioning that exercise or weight loss might help our symptoms. We get real revengey when people say stuff they know nothing about. 

This is to simply prove how much I love you all. Ehhem... I happen to be in the weight gain side of things right now. That beef fat analogy had to come from somewhere... Oh and the ice cream and Cheez It's as your only companion might be from experience. 


On the flip side, sometimes the disease, symptoms or medications can cause us to lose weight. Of course this is typically a pleasant side effect but sometimes it just makes us look sickly and unfed. You're welcome to compliment us when we've lost a normal amount of weight but I really urge you to think about being forced fed figgy pudding like the poor Grinch before you say we've lost too much weight or we need to eat a cheeseburger. Again, revengey. 

This was when I was on the sickly side... But Titus hunting for Easter eggs and my Grandparents are adorable!
Basically our weight is like a defiant teenager that does whatever it wants and really likes extremes. We hate it. Moving on. 

7. Being sick is our full time job. 

Except we don't get lunch breaks, weekends off, or ya know… Paid. So excuse us if all we talk about is our pain and symptoms or tell tales of doctor appointments and surgeries. We don't mean to offend you with using words like urethra or regular mentions of pee. It's just like you coming home from your desk job and telling everyone about arguing with Linda from accounting over the last stack of post it notes. 

Basically everyone's face when I talk about being sick. Again.

6. We are flakeyer than a day old croissant. 

We never know how we're going to feel in advance, even 10 minutes in advance. We really want to get out of our sick box so we will make plans and more often than not we will cancel at the last minute. Don't be mad or rude about it, we'd give anything to feel up to going. Don't assume we're not pushing ourselves… just the act of making the plans was pushing ourselves. Sometimes we can manage to muster up enough energy to have you over but sometimes the idea of putting on pants and being out of our bed limiting our usage of the word urethra is too daunting. 

So sometimes all we do is this.... 
But other times we get to get out and LIVE! 

Which brings us to… 

5. Guilt is just as much of a symptom of IC, or any chronic illness, as the pain. 

No matter how much you all say you understand and just want us to take care of ourselves we feel guilty when we cancel plans. We feel guilty when people have to juggle their busy schedules so they can take care of our kids while we sleep or drive us to dr appointments when we're curled up into a ball of agony. We feel guilty when we're sleeping during the day, we feel guilty when our husbands have to work overtime just to pay rent because we can’t work, we feel guilty when our kids ask if the medicine we take will make our owies better so we can sit on the hard floor to do puzzles, we feel guilty when we push to do something fun but then are too exhausted to do chores. We feel guilty when we see our parents crying over seeing their baby so sick for the millionth time and when our kids have to watch movies in bed with us to spend time with us. I could literally make an entire blog with a never ending list of things we feel guilty for. Just so you know, you're not condemning or judging us for anything we haven't already ripped ourselves apart about. 

I'm so incredibly thankful for my Mom and how much she does for us, especially when I'm sick but I always feel guilty when I can't do things no matter how much I know that they have fun together.

Which goes along with...

4. We are not lazy, we are sick. 

We would give anything to be able to play with our kids, work at a job, clean our houses, cook for our families, help others that have helped us, be attentive spouses, do the hard work AND the fun stuff! Whether it's from sheer exhaustion, increased pain, or just too groggy and weird from necessary pain meds... We simply can't. 

We hate being stuck in bed or the bath or wherever, just miserable. We would much rather be doing something productive. Our houses are messy, our hair is unwashed, our cars are untuned… We can't do life when we're just struggling to live… Take what you can get from us. Be thankful when we do make dinner or do a load of laundry, it probably took as much energy for us as most people use up after a day of living busy life. 

The excitement when I feel good enough to not only do laundry but organize proves that it's not laziness! 
(Sorry that got a little punchy… This particular misconception really jingles my bells…) 

3. We already have doctors so we don't need one with a degree from webmd. 

We so appreciate how much you care about us and want to help find a solution. However. We're 1,000 times more desperate for answers. We've done way more research, we've read even more articles about studies and new holistic treatments, and we've probably tried them all.

Please don't claim that your brother neighbor's niece’s cat sitter struggled with our disease and is now symptom free after going on an all natural beef jerky diet. (Now that's a diet I could get behind…) 

Don't tell us to try acupuncture or ask “if they can do heart transplants why can't they do bladder transplants?” 

Nope they can't do transplants. If your IC is end stage and you have no choice but to have your bladder removed you get a bag. Full of pee. That you wear. For the rest. Of. Your. Life.

We don't need you to fix us. We just need you to love us, listen to us, support us, and hate what we have to go through. 

2. WE ARE NOT ADDICTS EVEN IF WE'RE DEPENDENT. 

We have serious pain that is regularly compared to that of a cancer patient. Our doctors determine our needs and prescribe narcotics accordingly. That should be enough said but as we all know, it's physically impossible for me to keep anything short so I'll continue...

I've never heard of an IC patient that enjoys the high of pain meds because we're using them for real pain. We hate the side effects of the drugs but find it a necessary evil to be a part of society or just to breathe normally. Most of us will trudge through the scary forest of withdrawals regularly because we refuse to take them unless they're needed. 

It's important that you understand that our bodies can become dependent and throw a grand tantrum when not fed but that doesn't mean we are addicted. Our tolerance does shift as the years and pain goes by so yes we will need to increase the dosage and it will vary dramatically. 

The excitement when I'm off of meds and feeling good... I even get to drive! 

So unless you have some good, concrete evidence that someone is abusing the drugs then assume we have it under control, we respect the drug and acknowledge its power, and we're using it as it’s meant to be used.

Most of all…

1, Unless there is a miraculous intervention or medical discovery, we will never be healed of this disease. 

I am a perfect example of this. I had crippling endometriosis and interstitial cystitis so I have my uterus, ovaries, and cervix removed then I had my bladder and urethra removed. You would probably think I am well now? You would be wrong. You can take the disease out of the body but you can't take the body out of the disease. 

There will be days when we feel good, maybe even great! Let us enjoy those days without the assumption that it means we're cured. Our pain and symptoms will vary. We may even go into remission but we will always have these diseases lurking around in hidden caves of our body waiting to strike. 

Please just love us when we're sick and love us when we're well… Don't put more pressure on us or make us feel like you would like us more if we were better. 

If all of this seems doable then welcome! Thank you for your friendship and for walking this journey with us… We will be loyal friends and incredibly grateful for your love but we will also cancel plans, talk too much when we're on meds, and show up looking as unkempt as a hobo. Thank you for reminding us we have something to offer and have worth of our own. 


Jump in! The water's fine! 

10 things people with IC want you to know!

We moved a few months ago and joined a new community group at our church so we've had to had the pleasure of meeting a bunch of new people. It's always so awkward for me because my illness and pain are so much a part of my life but it's all a little too much info for a first introduction… So I do the modest, polite thing and wait until our 2nd meeting. 

Then I started to get to know people better and they must have confused me for someone else or maybe nodded off while I was rambling on and on about the inner workings of my new urinary tract because they actually wanted to get to know me and even become friends. It's very strange. I'm thinking maybe I should write a letter to the mayor about getting the water tested here...

Anyway. These new friends of mine have been wonderful! So loving and accepting of all my weird things- physically and personally. However I have realized I feel the need to recite some warnings and disclaimers at the beginning of these relationships and I thought maybe other people with IC or other chronic pain/ illnesses feel the same. So rather than us constantly reading the rights to these poor, unexpecting friendly people over and over I thought I would put together a list of the 10 things we want others to know about being in any kind of relationship with us… Feel free to share and use for your own people mining. 

10. Please don't mention how we look unless it's ravishing then simply say “you look ravishing”.

Definitely do not say “wow you don't look very  good” OR EVEN “you don't look sick!” Although IC is often described as an “invisible disease” and people love to point out how not sick we look, we hate that. We push ourselves to remain cheerful amongst the highest level of pain and when people happily diminish that based on our smiling faces it makes us want to never smile again. After we punch YOU in the face. 

Look at me. In the hospital, super sick with a kidney infection smiling and throwing the V for Victory... Even though our beloved USC Trojans lost that game... 


Of course sometimes we’re exhausted and miserable making us clearly look sick, no need to point that out either. 

What a lovely example of me looking sick... And also like I murdered an entire nest of baby birds and enjoyed it. 

As far as clothes… We want to dress cute and normal but our whole entire pelvic area is so sensitive that anything even slightly tight or stiff is unbearable. Leggings becoming trendy was an exciting fashion time for those of us who feel like belted snowmen after a fresh snow storm if we wear jeans. We are pretty much left with sweats, yoga pants, leggings, and dresses. 

Don't question the level of formality based on our outfits. Ever. Sometimes we’re in so much pain that even baggy husband sweats are too much pressure and we are forced to wear dresses. No we're not going anywhere. Yes we clean up nice. We know. Thank you. On the flip side sometimes we wear sweats to a party because that's all that we can manage. We know we look like a scrub (I can't think of the last time I used that word and I'm just downright nostalgic about it now.) but just be happy we're out of bed. Thank you. 

This is me. In pajama pants with tiny martinis on them, oversized sweatshirt and my hubbys boots. At Walgreens. 


In a dress. At the river. 
Also, we rarely wear makeup or do our hair. It's hard enough to just get out of bed and maybe even, but not guaranteed, shower. Unless it's an occasion where gifts are exchanged or luxurious food is consumed don't expect much. Yes, I make most important decisions based on food alone. 

Which leads me to… 

9. Most of us with chronic illnesses, especially IC, are on strict diets. Don't push us to “splurge” or “treat ourselves”. 

We're not trying to lose weight (more on that topic next), we mean our irate bladders cannot handle any added acidity. If you truly care then take the time to study the IC diet list and memorize it but I always like to say if you wouldn't want it to drip into an open wound then we probably can't eat or drink it… Tomatoes, citrus, alcohol, spicy foods, etc… Don't take offense if we don't eat your bountifully fresh caprese salad or do a shot of tequila with you at your bachelorette party.(Some of us, including me, are exceptions to this rule but it's a big one for the majority of us!) (I mean the entire diet point not specifically the tequila…) (I feel like I didn't make this clear... After my cystectomy I was allowed to eat whatever I wanted, including but not limited to tequila.)

My first legal orange!
Oh one more thing on that topic… FOR THE LOVE OF GRAVITY PLEASE STOP TELLING US TO DRINK CRANBERRY JUICE. It not only doesn't help, it's a huge trigger for us! Thank you. 

8. We are fat, skinny, swollen, starving, sickly, plump… It's not our fault! 

We've all struggled with weight in different ways thanks to our disease. Most of the medications prescribed for IC, and other chronic conditions, have the ever frustrating side effect of weight gain and increased hunger but if we find something that helps we'd rather have thighs that look like the gelatinous goop that is carved off of a cold, fatty slab of beef stuffed into patty hose (hello visual…) than any symptom that could be otherwise controlled. We will always choose a medication that helps symptoms long before the hope of a svelte figure. Sometimes our weight gain in simply caused by being stuck in bed with only ice cream and Cheez Its as our companions. Either way. Our increased weight is not at fault for our miseries. I would strongly urge you to consider how much you would like to be tied to the back of a car and forced to run behind it before ever mentioning that exercise or weight loss might help our symptoms. We get real revengey when people say stuff they know nothing about. 

This is to simply prove how much I love you all. Ehhem... I happen to be in the weight gain side of things right now. That beef fat analogy had to come from somewhere... Oh and the ice cream and Cheez It's as your only companion might be from experience. 


On the flip side, sometimes the disease, symptoms or medications can cause us to lose weight. Of course this is typically a pleasant side effect but sometimes it just makes us look sickly and unfed. You're welcome to compliment us when we've lost a normal amount of weight but I really urge you to think about being forced fed figgy pudding like the poor Grinch before you say we've lost too much weight or we need to eat a cheeseburger. Again, revengey. 

This was when I was on the sickly side... But Titus hunting for Easter eggs and my Grandparents are adorable!
Basically our weight is like a defiant teenager that does whatever it wants and really likes extremes. We hate it. Moving on. 

7. Being sick is our full time job. 

Except we don't get lunch breaks, weekends off, or ya know… Paid. So excuse us if all we talk about is our pain and symptoms or tell tales of doctor appointments and surgeries. We don't mean to offend you with using words like urethra or regular mentions of pee. It's just like you coming home from your desk job and telling everyone about arguing with Linda from accounting over the last stack of post it notes. 

Basically everyone's face when I talk about being sick. Again.

6. We are flakeyer than a day old croissant. 

We never know how we're going to feel in advance, even 10 minutes in advance. We really want to get out of our sick box so we will make plans and more often than not we will cancel at the last minute. Don't be mad or rude about it, we'd give anything to feel up to going. Don't assume we're not pushing ourselves… just the act of making the plans was pushing ourselves. Sometimes we can manage to muster up enough energy to have you over but sometimes the idea of putting on pants and being out of our bed limiting our usage of the word urethra is too daunting. 

So sometimes all we do is this.... 
But other times we get to get out and LIVE! 

Which brings us to… 

5. Guilt is just as much of a symptom of IC, or any chronic illness, as the pain. 

No matter how much you all say you understand and just want us to take care of ourselves we feel guilty when we cancel plans. We feel guilty when people have to juggle their busy schedules so they can take care of our kids while we sleep or drive us to dr appointments when we're curled up into a ball of agony. We feel guilty when we're sleeping during the day, we feel guilty when our husbands have to work overtime just to pay rent because we can’t work, we feel guilty when our kids ask if the medicine we take will make our owies better so we can sit on the hard floor to do puzzles, we feel guilty when we push to do something fun but then are too exhausted to do chores. We feel guilty when we see our parents crying over seeing their baby so sick for the millionth time and when our kids have to watch movies in bed with us to spend time with us. I could literally make an entire blog with a never ending list of things we feel guilty for. Just so you know, you're not condemning or judging us for anything we haven't already ripped ourselves apart about. 

I'm so incredibly thankful for my Mom and how much she does for us, especially when I'm sick but I always feel guilty when I can't do things no matter how much I know that they have fun together.

Which goes along with...

4. We are not lazy, we are sick. 

We would give anything to be able to play with our kids, work at a job, clean our houses, cook for our families, help others that have helped us, be attentive spouses, do the hard work AND the fun stuff! Whether it's from sheer exhaustion, increased pain, or just too groggy and weird from necessary pain meds... We simply can't. 

We hate being stuck in bed or the bath or wherever, just miserable. We would much rather be doing something productive. Our houses are messy, our hair is unwashed, our cars are untuned… We can't do life when we're just struggling to live… Take what you can get from us. Be thankful when we do make dinner or do a load of laundry, it probably took as much energy for us as most people use up after a day of living busy life. 

The excitement when I feel good enough to not only do laundry but organize proves that it's not laziness! 
(Sorry that got a little punchy… This particular misconception really jingles my bells…) 

3. We already have doctors so we don't need one with a degree from webmd. 

We so appreciate how much you care about us and want to help find a solution. However. We're 1,000 times more desperate for answers. We've done way more research, we've read even more articles about studies and new holistic treatments, and we've probably tried them all.

Please don't claim that your brother neighbor's niece’s cat sitter struggled with our disease and is now symptom free after going on an all natural beef jerky diet. (Now that's a diet I could get behind…) 

Don't tell us to try acupuncture or ask “if they can do heart transplants why can't they do bladder transplants?” 

Nope they can't do transplants. If your IC is end stage and you have no choice but to have your bladder removed you get a bag. Full of pee. That you wear. For the rest. Of. Your. Life.

We don't need you to fix us. We just need you to love us, listen to us, support us, and hate what we have to go through. 

2. WE ARE NOT ADDICTS EVEN IF WE'RE DEPENDENT. 

We have serious pain that is regularly compared to that of a cancer patient. Our doctors determine our needs and prescribe narcotics accordingly. That should be enough said but as we all know, it's physically impossible for me to keep anything short so I'll continue...

I've never heard of an IC patient that enjoys the high of pain meds because we're using them for real pain. We hate the side effects of the drugs but find it a necessary evil to be a part of society or just to breathe normally. Most of us will trudge through the scary forest of withdrawals regularly because we refuse to take them unless they're needed. 

It's important that you understand that our bodies can become dependent and throw a grand tantrum when not fed but that doesn't mean we are addicted. Our tolerance does shift as the years and pain goes by so yes we will need to increase the dosage and it will vary dramatically. 

The excitement when I'm off of meds and feeling good... I even get to drive! 

So unless you have some good, concrete evidence that someone is abusing the drugs then assume we have it under control, we respect the drug and acknowledge its power, and we're using it as it’s meant to be used.

Most of all…

1, Unless there is a miraculous intervention or medical discovery, we will never be healed of this disease. 

I am a perfect example of this. I had crippling endometriosis and interstitial cystitis so I have my uterus, ovaries, and cervix removed then I had my bladder and urethra removed. You would probably think I am well now? You would be wrong. You can take the disease out of the body but you can't take the body out of the disease. 

There will be days when we feel good, maybe even great! Let us enjoy those days without the assumption that it means we're cured. Our pain and symptoms will vary. We may even go into remission but we will always have these diseases lurking around in hidden caves of our body waiting to strike. 

Please just love us when we're sick and love us when we're well… Don't put more pressure on us or make us feel like you would like us more if we were better. 

If all of this seems doable then welcome! Thank you for your friendship and for walking this journey with us… We will be loyal friends and incredibly grateful for your love but we will also cancel plans, talk too much when we're on meds, and show up looking as unkempt as a hobo. Thank you for reminding us we have something to offer and have worth of our own. 


Jump in! The water's fine! 

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.