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!!

                      Our inspiration. 

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!)