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! 

Better.

What does the word better mean to you? The first two things I think of is Doc McStuffins and that weird wannabe butter stuff. Let us dissect that...

My kid has a disabled mom so we watch cartoons slightly more often than I would prefer but we try to pick educational shows and pat ourselves on the back when he spouts out the difference between a crocodile and an alligator or the definition of empathy. I've seen them all so many times that now I delve further into episodes and create deeper plots within plots. I have some written down... In Daniel Tiger I'm pretty sure X the Owl and Mrs. Pussycat are having an affair... Opposites attract, living in the same tree, single parents... I get it. Then in paw patrol, what's up with Alex? Where are his parents? I think if they were around more he wouldn't be making such poor choices all the time. Of course there is the age old questions about Mickey Mouse, why is Pluto like a real dog and Goofy can speak and wear clothes? Speaking of which... Why doesn't Donald Duck wear pants unless he's swimming? 

Doc McStuffins is kind of a mystery to me. Admittedly my child has an extreme aversion to "girly" things which would include Doc McStuffins in his mind so I haven't had time to analyze it fully, I'm sure there is some hidden plot in there somewhere. 

For those of you who don't have tiny humans controlling the remote, Doc McStuffins is a little girl who fixes toys... At the end she and the speaking toys (obviously) sing a song that goes "I feel better, so much better, thank you doc for taking all my ouchies away, I didn't feel so good until you fixed me up like I knew that you would." It's catchy. Anyway. She fixes the toys and they're better... Moving on. 

If you know me you know I love to cook and I love to eat. Both of which I love to do with butter. Real butter! Don't even try to give me margarine or any cheap oil based "replacement". Ew. I would rather have no butter than fake butter... Any time "butter" comes in a tub it's not butter and it's definitely not better than butter. The only, and I mean the ONLY, thing that's even worth mentioning about it is that it spreads nicely even if it's been in the fridge. 

So there is 1 teeny advantage of this suspicious substitute. It spreads while cold. Whoop de doo. Now... If someone on team butter replacement and I were debating which is better they would have 1 valid point. In one way it is slightly better but then I would rebuttals that if left out for just a while or even microwaved for a few seconds butter is also spreadable. It's also more delicious. Which always wins. 

So would the butter judge think that the one slight advantage is worthy of considering? I like to think not, but that weird guy that apparently spends his life defending butter replacements could still walk away saying that his weird non-solid, non-liquid substance is better than butter. Without me there advocating for the pure delight that is butter maybe he could convince those that are uninformed and undecided. 

He would be right. It is "better" than butter in one relatively inconsequential way so he could just say it's better without specifying it's only better in one way or talking about all the ways it's simply not better. 

Now that I've gone down a dark trail of distraction... Which was not the first or last time that will happen about butter... Let me get to my point. 

My UTI/ kidney infection is gone! Hooray! Also, I'm completely off pain meds! Hooray! Both are huge feats and way more exciting than straight out of the fridge spreadability. 

However... I'm still not better. I mean I'm better in two huge categories but you don't just get "better" in a couple weeks after being sick for most of your life. So I guess that's the question if the word better means you're doing less worse than you were or if it means you're totally normal now. I don't know. 

Here's what I do know.... I was able to drive myself to target the other day! But I was so weak and dizzy that I almost passed out in the baking isle. I was able to go to church and have my whole family over but I was so sore and exhausted for days. Each day has it progress and its setbacks. I am completely off narcotics once again but the withdrawals were heavy and thick for days. 

My muscles are very angry with me... My heart and mind are telling me I'm feeling "better" so I should get up and do life but then my muscles are like whoa where's the hurry?! I'm also exhausted all the time, no matter how much I sleep. Which reminds me, my sleep schedule is still all wonky from having to wake up super early in the morning to take meds. 

I would say worst of all my stomach is still so cranky! I don't know why! I really don't... Tuesday I was debilitatingly nauseated all day. My nausea patch had worn off so maybe it was that but it was not a good day, I didn't feel better. It just felt different than the last issue.  I'm also still having sweat inducing cramping and all over abdominal pain. 

Also. Have I mentioned I have a hernia under my biggest incision? So far nothing important has been trapped in there so we're just leaving it alone but it hurts when I use the muscles in that area to sit up or whatever.

  Aren't you glad you chose to read this?

So to answer the burning question... Yes, I feel better but still far from best. God has, and continues to, bless my family and me abundantly amidst the most tumultuous trials and tribulations but I'm still sick. I have a Urostomy, my body has been severely deconditioned, I have a very short ileum, and I've been sick for 15 years. Antibiotics are great but not magic... I still have some issues. 

However, I think God planted a seed of acceptance and I've started to accept that this is my life, some day it may change but for now we forge on with the idea that my body won't be well and perfect until it's renewed in Heaven. 

If you're a friend or family please be patient with me and understand that "better" is a lot different than "well". If you're an IC'er, empower yourself to be honest when people genuinely ask how you are and explain that even when you're doing better IC will never be gone. Lastly... Don't forget that I had my bladder removed and I'm still struggling with so many things. Please don't consider a cystectomy as an easy out! 

In other news... Happy Halloween from the Jovanovich Family! (Another example of excellent TV education, Wild Kratts and panda power!)

                       Panda Power!!

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Hostile Hospital

You'd think I'd be used to being in the hospital considering I can't even calculate how many days I've spent there, especially throughout the last 2 years... But I'm not used to it, I hope I never get used to it. 

Some experiences have been better than others but none have been great. I've realized it's more like being locked in a pastel painted prison than it is like staying in a sterile hotel room. 

The doctor is the warden and the nurses are his correctional officers. There are some gems out there that really do care and take the time to make their patients feel as such but for the most part they tend to take the easy road of no compassion. It's easier to pretend like the patients are just their assignments, not real people whose lives matter. So they dole out instructions and are quick to share their judgement on your choices all while leaving a sense of superiority in their wake. 

As a patient I have become a dependent of "the system". I'm told what and when to eat, when to shower, how much I need to walk, how much I should drink, what medications to take and what dosage, and even what to wear! They test my body as if they're searching for signs of drugs in my system.They document my every move, I'm known by my patient number and date of birth, and openly talked about like I'm a project to handoff at shift change. They poke and prod me thoroughly as if they're searched for contraband while asking if it hurts. Why yes, yes it does!  To complete the juxtaposition of feeling like an inmate working for my prison guard they put an alarm on my bed because they didn't want me walking around without assistance while my blood pressure was low.

However! None of that compares to the interrogation... I'm not sure if there truly are people out there who go to extensive lengths to try to convince doctors that they're horribly ill and in need of the doctors self proclaimed precious attention! I can't speak for those whack jobs but I can tell you that the LAST thing I want to be doing right now is lying in a hospital bed, draped in overly starchy sheets, exhausted from being woken up all night, full of compliance insuring drugs and missing my family and my life. So when they treat me like they're going to catch me in a lie and find out that I am actually healthy my blood starts to simmer. 

They all ask the same questions over and over, they clarify past test results, list the symptoms that I'm lacking, belittle the symptoms I do have, and question my misleading chipper attitude. 

Then they bumble around trying to find a reason to pawn me off on another doctor... Who then starts the process all over again. 

I spent 5 days in the hospital last week and I was worked over and over. The whole reason I went there to begin with was as directed by my doctors to get some IV antibiotics and smash this kidney infection that I've been battling for the good part of 2 months. 

After the hospital doctor tried and failed to find an antibiotic that would work he called in some pretentious infectious disease doctor who declared that not only was I not allergic to most of the meds on my allergy list I also did not have a kidney infection... Despite the white blood cells and bacteria in my urine, the extreme pain and nausea, the rank smelling urine and feeling just overwhelmingly sick. 

       My sad hives from the medicine I was clearly not allergic to... 

His basis of this conclusion was that when he thumped around my back it was painful in a broader area than just where my kidney was and because the antibiotics weren't working. He was very clear that that was his conclusion and I should trust it and move on. 

So there I sat. In so much pain and incredibly nauseous, with no antibiotics or other treatment plans underway. They were treating my symptoms but with the same meds I had at home... 

I spent most of my time resting, analyzing my symptoms, venting and complaining that I was in a hospital that only has UNsalted saltines... I pretty much concluded that only a moron who hated life and wanted others to be miserable as well would have created an unsalted saltine. It's textbook sadistic narcissist behavior! Why would they do that to the much beloved food mascot of hospitals worldwide?. I think it slanders the honorable title of the saltine because truly what is a saltine without salt

Anyway! After a 5 days in the hospital the doctor declared there was nothing more he could do for me and to follow up with my pain management doctor. I gave up, I surrendered to the system. They said I wasn't sick and they didn't want to deal with me anymore so I was vanquished. 

I have to tell you... I was in a real dark place there for a while. Being so miserable and then blatantly told that there's nothing wrong with you is just about the most confusing thing. I was humiliated and angry, I was questioning myself, I was so incredibly discouraged.

I just laid in my bed for a couple days in so much physical and emotional strife. One minute I was so scared that this was going to be my new norm. Then I was afraid that maybe I was so stuck in a world where everything was acute that I mistook the symptoms for something more severe. Minutes later I would be overwhelmingly angry that I was doubting myself. Then I would yell at my beloved family. Then I would cry. 

I had never been so miserable with absolutely no reason why and no possible treatment, I couldn't accept it. So I decided to go to my primary care PA. He knew me, he had treated me for bad infections in the past. 

I was surprisingly nervous as I waited to see him but the moment he came in and started talking I knew he was on my side and that's all I cared about. 

He had read the reports from the hospital which blatantly said it was either all in my head or I was just there for drugs. That crushed me for a minute. I felt the red hot sear of humiliation and anger. 

Thankfully he knows me well enough to know that's just hooey! He also looked at my urine culture, which the hospital doctors didn't even bother to read because they thought it wasn't valid for someone who has an ileal conduit (a piece of intestines as a part of the urinary tract), and discovered I actually had two kinds of bacteria in there! 

So what had been happening was that I would get my urine tested then they would start me on one antibiotic which would kill the one bug then when I wasn't getting better they would test it again and see another kind of bug so they would stop the original antibiotic and start me on a new one... They went back and forth for 2 months never finding both kinds of bacteria at the same time! 

So when that dipstick infectious disease doctor was so sure that it wasn't an infection and took me off all antibiotics my urine test finally showed both bugs!!! 

My amazing pcp felt sure that a big round of a mix of two kinds of antibiotics would do the trick! Of course I'm allergic to one of them so I have to take Benadryl and I'm drowsy but what's 10 days of sleepiness if it means healing! 

I'm only in the middle of day 3 of this course of antibiotics and so far I'm just feeling the tummy troubles of taking a bucket full of antibiotics but I should start seeing a difference soon!! 

If not, there is a plan b... An aggressive round of antibiotics that would be a shot a day for a week which are apparently pretty unpleasant. 

Then after I'm feeling better and I finish either treatments he wants to test my urine again and if it's negative for bacteria then we will know we can trust cultures in the future, if it's positive we will know to trust my symptoms. 

Sheesh... What an ordeal! I'm so thankful to be on this side of things... I don't think anything has ever affected me quite so fiercely emotionally. I was in a really dark place for a few days... 

So my advice for the day... When in doubt, trust your instinct and get a second, third or fourth opinion until someone at least respects and acknowledges you and what you're going through. 

Oh and to end on a happy note... I just got our family photos that we did a month ago and isn't my child one of the most adorable creatures that ever lived?! (Oh and... Isn't it impressive how healthy I can look when I'm so sick!)

#UTI

I planned on writing blogs detailing everything that has happened the last year in chronological order except I'm currently going through one of the most difficult battles of this whole mess and I always feel like I can more accurately describe things while I'm in them so I have fresh indignation and hatred. Or so I can be more specific. Hard to say which... So. Enjoy the rant disguised as a blog. 

We are smack dab in the middle of this techy generation full of abbreviations and acronyms But i am pathetically and perpetually confused. I seek counsel from my ever wise and knowing 16 year old niece on all things trendy for which I'm truly #blessed. Although imo, smh, dm, jsyk, and ikr mean next to nothing to me there is one acronym that I know all too well, the dreaded... UTI. Or for those of you that either aren't as hip as me or are just much healthier it's a urinary tract infection. 

Back in the day when I had a bladder I would wish on a shiny penny that my IC flares could be explained with the news that I had a rare UTI because it meant that there was a reason I was suffering more than usual and I, for once, had a problem that had a relatively easy fix... Unlike my overuse of punctuation which unfortunately has no cure. 

Now, most people probably assume you can't have a UTI when the majority of your urinary tract is missing. Well they're wrong. I do not have a urethra or a bladder but I do still have ureters and kidneys. Both of which are more than happy to get infected! 

The problem is a little UTI that would normally be horrific and painful but easily treatable could be life threatening to someone who has such a botched urinary tract as myself. 

First of all, I don't see the early signs of infections like increased bladder pain or burning when urinating for obvious reasons so by the time I realize something is going on I am lethargic, nauseous, having all over abdominal pain, have a fever, flank (mid back area) pain, and the old familiar but peculiar feeling that I have to pee! 

When I finally realize there might be an infection I have to rush to have my urine tested since I know I already have a late start on things. However, I obviously can't just pee in a cup but I also can't pour some of the urine I carry around in a glorified fanny pack into a cup because it would be contaminated by bacteria in the bag. So I have to take my bag off, clean my stoma and then wait for the urine to drip into the cup. Depending on how much I've had to drink this can take up to 30 minutes... I have no control over my urine flow so I literally just have to sit there all awkward hunched over the pee cup, covered in a towel in case it spills and wait. This would hypothetically take longer if I got distracted by trying to see how high my urine fountain could go, I don't know that for sure, I'm just saying hypothetically. 

Once they have the hard earned urine they can't just do a regular dip test because the piece of intestines that makes up my ileal conduit still has bacteria in it and the dip test will always show positive. So they have to solely rely on the culture results, which takes 2-3 days, to see if I have an infection and if so, what kind of bacteria is it and what antibiotic will it be sensitive to.

For me the challenge continues because I have an extensive list of allergies so they have to find one that I'm either not allergic to or I have to take Benadryl around the clock to prevent a reaction while taking the medication that I'm allergic to.

Which is what's going on right now... So as if the morphine and phenergan for the pain and nausea from the infection didn't make me sleepy enough let's dump in constant doses of Benadryl. I'm to the point where it doesn't knock me out it just makes me sooo tired and anxious! Every noise is too loud, every thought is too overwhelming and every person is too annoying but if I don't take it I get an itchy rash all over like I rolled around in some poison ivy. Not that I've done that but I imagine if I did... I'd be itchy. 

So here I am. I've been on the antibiotic that I'm allergic to for 10 days. Some moments are better than others but I'm still really sick. There are a few possible explanations to this frustrating dilemma. 1. The infection is so bad that it's truly needing every dose of the prescribed 20 days of medication. 2. Because I've been on this particular antibiotic so many times my body and the little mutant bugs inside creating chaos have become resistant to it. 3. My body is just taking its sweet time to get back to normal after such an aggressive infection. 4. It's all in my head. 5. The aforementioned mutant bugs are making me think I still have a UTI so I will feed the little cannibals the antibiotics they crave. It could literally be any of those... 

So in the meantime I'm left with the question of what do I do?! It's been 2 weeks since I sent in my urine sample and things continue to erratically get worse and stay the same. I went to ER last week when my heart rate was consistently over 100 bpm and my pain and fever were soaring as well. They did all the tests. Everything showed up as expected. They gave me an IV dose of antibiotics and sent me home on the same itch inducing meds I had been on. I still haven't heard the culture results yet but those aren't always conclusive after I've been on antibiotics because some cruel twist of misjustice can cause the otherwise ineffective antibiotic to show a false negative culture on my urine. 

So. What to do? I've been sick for 2 weeks. Like really sick. In bed all the time and once again missing out on life! 

Well, I did rally all my energy and took lots of meds so my hubby and I could take our kiddo, Titus to the circus for his birthday. I was on edge and drugged up the whole time, I was even seeing a lady hanging upside down from a curtain, an elephant playing the harmonica and dogs doing a conga line... Oh wait. Maybe those things were real. Hard to say at the circus but I hope Titus just remembers the fun and that we were there as a family and not my questionable mental state... 

Last time my infection was this bad I ended up getting admitted to the hospital but I don't want that... They don't even really know what to do with me there but my doctors are at a loss. So as incredibly ironic as it is... I'm going to my old, faithful urologist tomorrow. I never guessed I would need a urologist when I no longer had the equipment she usually works on. It's like a car showing up to the mechanic without an engine... I guess there are still bits to work on but it's just a little strange. Anyway. Hopefully she knows some out of the box antibiotic to try or maybe even has some advice to prevent future infections. 

In summary... If you're prone to UTI's, you will likely still get them even if you don't have a bladder. Further evidence that IC is not greater or less than life without a bladder. It's equal.

(P.S. I'm having such a hard time getting back into blogging! What I could have cranked out in a couple hours back in the peak of my blogging days took me days to write. It's also lacking some of my confidence and easy whit but bear with me and hopefully I'll be back in fighting shape soon!)

I'm back!

Hello readers!!! Oh how I've missed you guys!!! I can't believe it's been a year since my last blog... I guess it doesn't feel like that because I never stopped writing blogs, I just haven't posted them... So maybe that's not a blog post so much as a diary entry? 

I stopped posting them because I felt like I was becoming a poster child for radical cystectomies for Interstitial Cystitis. These beautiful women who were overwhelmed by suffering and desperate for relief saw this as a possible way out! Whether they were just diagnosed or old timers, the idea of getting rid of the organ that tortured them every moment of every day was very appealing! 

However, being someone who's choice was taken from them and was forced to have this incredibly major and life changing surgery I can't stand the thought of anyone doing this simply in the hope that it will alleviate symptoms, especially after any misleading encouragement from me!

Also, I felt like I didn't belong now that I technically didn't have IC or a bladder anymore. I didn't think I could gain from or give to the other IC'ers anymore... 

So I thought I should just stop sharing my story... I retired the blog and left the IC community. Unfortunately I didn't know at the time that my story was about to get way more interesting and probably would have been very eye opening to those that thought having a RC was an easy way out.

Well now here I am... A year after abandoning my post, 16 months after having my bladder removed, 13 years after being diagnosed with IC and I still miss my community. I miss the unfortunate bonding over similar miseries, the dark humor that no one else gets, the  advice given and received, the drama (who doesn't like to sit back and watch some juicy drama you're not involved in?) and most of all the friendships that were built out of pain but flourished into beautiful connections that far exceeded our physical despair. 

Also, practically every day I feel an undeniable pull on my heart towards this blog. When I pray and ask for direction in this crazy, unusual life of mine God brings this blog to my mind every time. He continues to push me towards it... I don't know why this is what He wants from me but after months of unsuccessfully trying to convince Him to maybe choose a new avenue for me, I finally gave in. Thankfully it didn't take me getting swallowed by a giant fish to finally comply... 

So. I'm back. 

I'm here to share my journey. I know it's different than most of my IC readers and I still don't want to scare the freshly diagnosed but unfortunately radical cystectomies and urostomies are very real possible outcomes for people with untreatable, end stage IC. 

 My dear blog still receive daily views and comments, reaching almost 60,000 total views but I had closed myself off from it. I disassociated with it because for some reason it just brought such strong feelings of grief and loss.

Except that when I started this blog 2 1/2 years ago I said if I helped just one person by sharing my journey it would be worth all the transparency and heart I poured into it. I forgot about that.... 

So, I'm choosing to reinstate the declaration I originally made and once again open my life to my readers in the hopes of encouraging or positively influencing just one person. 

In the coming days I will give some brief recaps on all that has happened in the last year... Although if you've read any previous blogs you know I don't do "brief" real well and I have a LOT to share... So I will post some updates of undetermined lengths... 

Thank you for hopping aboard and joining me on this snarky, overly detailed, highly dramatic, sappy, brutally honest and real journey of my life "after IC". I hope you can see my heart and accept me back as I am.