Because You Loved Me...

First of all... I am terribly sorry I have been slacking on writing blogs for the IC community... I have to admit that it's difficult when I don't have IC more. So I'm basically just using this when my thoughts don't fit on a facebook status... If you're someone with IC looking for into feel free to message me and  can direct you to a helpful blog or set you up in an IC group.

It's been exactly 1 year since my Dad passed away. I am feeling so many mixed convoluted emotions. I think creative people need an outlet to really process information... So I just started writing. I had no intention to post it but we all know my TMI alarm is on the fritz. 

Basically I just wrote about that night my Dad passed away from my perspective. I would love to read the recount of that dreaded night from the rest of my family but unfortunately you're stuck with my side of story...

On May 13th Jeny came over for homemade fajitas and to visit with our Dad. He actually ate a bit for the first time in days and then we snuggled into the bed with him and my mom and we all watched Friends. Jeny and I were being obnoxious and laughing about some random thing that I think had something to do with a ladle and he said "what're you girls giggling about?" (The very last thing I heard him say...)

I figured that was our cue to let him get some rest so I rubbed his arm (I only lived upstairs) and Jeny gave him a hug and kiss on the cheek then she went home. 

I went upstairs to my room and continued sorting photos which I felt the need to do as soon as his doctor started talking about hospice... I stumbled upon his senior year book and the quote he chose to go with his name and under this picture was "A talent for comedy equal to that of the Greeks." which makes no sense so I texted him and asked what he meant... He never responded.

I was sitting in my bed watching the finale of American Idol while Zach slept next to me. All of a sudden I heard animalistic cries full of panic and fear. I paused my show and then my mom bursted into our room and gulped and gasped for air as she said "I think. I don't know. I think he's gone." 

I roughly woke Zach up and unplugged my urine drain bag and my charging phone. My mom was staring at her phone but couldn't focus so I called 9-1-1. 

I said simply... "I think my Dad died" 

While I was on the phone I walked into my parents bedroom and saw him laying there. My mom shook him a few more times and even though I could see his soul had left I ran upstairs to get the finger O2 and pulse rate monitor that we shared. By the time I got it on his cold finger I was 100% sure he was being welcomed into heaven. 

However the 9-1-1 operator kept telling me to do CPR and I told her I couldn't do it, he was gone, he didn't want to get brought back, he was too sick and he was ready for heaven! She told me to give the phone to someone who could and so I gave it to Zach thinking he would tell her to shut up or something. He stood on my parents bed looking down at my Dad's body that was clearly just an empty vessel at this point. My strong, unflappable husband cried as he repeated over and over "I can't do it!!!!" he pleaded with the operator. Just then I saw the flashing lights and told Zach to hang up the phone and to just wait. I ran outside in my paper thin nightgown and screamed for the paramedics to follow me.

I showed them to his room and then I found myself in the hall sobbing into my husbands chest when we heard the paramedic say "we need everyone's help now!" 

My mom yelled "DENI STAY OUT" just a second too late. I saw the medics lift the sheets he laid on and aggressively and urgently pick up the edges of the sheets to drop him onto the floor. We all told them he had a DNR (do not resuscitate) order. Finally his heart had failed and they realized he was truly gone. 

So my Mom, Zach and I walked out with the image of my Daddy's earthly body dead, naked and on a sheet on the floor of his room forever burnt into my mind.

(Later I found out the paramedics consoled Zach and told him he made the right decision in not doing CPR. I'm so thankful that they took that guilt away before it even had time to fester.)

Then my mom, Zach and I collapsed into each other's arms and sobbed.

We all prayed together for a while but then next thing I knew my desperate sobs turned into gentle tears slipping silently down my face. Then I started talking except I was saying things I didn't see or know or hear. 

I smiled and said something like "he's running through a beautiful field. Do you smell that? It's the best thing he's ever smelled. Oh there's music, it's beautiful." 

Then I went back to crying. I will never doubt the Holy Spirit's power because I know He spoke through me that night to comfort us. 

After that the kind, gentle firemen and paramedics told us he was officially gone. We cried and hugged some more.

Then I called my siblings. Jeny and Todd both said they were right coming over but we couldn't get a hold of my oldest sister, Dana.

So Zach announced he was going to drive the 30 minutes to my sisters to tell her and then come right back. I was totally against him going but looking back I think that was for selfish reasons, he was my rock. Then one paramedic gently advised that I let Zach go, she could tell he needed a job so I nodded my head and he left.

Right after that Jeny walked in. We all sobbed together then Todd came in and we all just huddled up and cried. 

The emergency team was still there but gave us space until we caught our breaths and began the literally never ending grieving process. 

The firemen recognized my Dad from the few times he had fallen out of his wheelchair and we had to call them to help. They told us what a sweet funny man he was and that helped. Then he asked us about him...  

(Such a good move!) 

We took turns telling them about all of his achievements, his adventures, his quick wit, the things that made him one of a kind and of course about his deep faith. We all slid back and forth from smiles to tears within seconds.

My big, strong brother sat in one spot and answered questions or nodded  occasionally but he was quiet and the tears never stopped. His face was a glimpse of what his heart was doing. Breaking. 

The cat tried to play with the fireman's radio cord that was hanging down. We all smiled at that. 

Then Zach got home and Dana got there with the girls, 16 year old Macy and 11 year old Tayte, not much later. It upped the ante having the kids there but I know they wanted to be with all of us.

We sobbed without speaking for quite a while. Then the police showed up, the funeral home people came, and the city Chaplin got there.

The fire and police chatted, apparently anytime someone dies outside of a hospital the cops come just to check thing out, they all agreed that it was due to natural causes so the cop left. 

The funeral home had my Mom sign some papers I'm sure she didn't even read. Then we heard a little commotion and one of the firemen came to tell us they couldn't fit the gurney into the room so they'd have to drag my Dad into the kitchen. 

The hardest part of the night, in my opinion, was accidental looking back and seeing a black bag that I knew was full of my Dad's body. Then they had to get him on the gurney and after a bunch of grunting and "I'm about to drop him!", "you grab that side!" I pulled Tayte close to me and covered her ears and randomly sang the Barney song to try to cover the sounds. 

They finally got him safely on the gurney and then we all mistakenly turned our heads to the front door as they wheeled him out. Bad move.

We all totally lost it again. We sat in silence with tears pouring down our faces, passing tissues around.

I looked around and saw the people I love most, they were all in pain and I wanted to console each one but didn't know how. So I moved from seat to seat holding hands and crying with each of these beloved people. 

Then the Chaplin came in and I spent a substantial amount of time rolling my eyes as he introduced himself and told us his life story.... He went on to say all the empty condolences that the Chaplin For Dummies book taught him. But the worst/ best part was him saying.multiple times, "Every tear is a visual hug" over and over. 

I still don't get it. 

Then he left and none of us knew what to do. We sat in stunned silence trying the impossible task to accept that our dad, the kids' poppa, and my moms husband was gone. 

We knew he was in a world of bliss that we can't even imagine but selfishly the physical ache of losing him was shocking. 

Now it's been exactly one year since that early morning.  The pain is still real. We're still trying to figure out this totally new version of our lives. We miss him every single day but you know what I was thinking... His 4 children were made from parts of him and I feel closer to him when I'm with them...

Dana (the expensive one) has his ability to schmooze and chat with random people so well that those people expect a lifelong friendship after one jokey moment in the grocery store. She also is funny in unexpected ways that surprise you and then you laugh even harder. She also lived out adventures with him: sailing, yachting, flying and racing. She was his girl. They spent a lot of time just the 2 of them when Dana was growing up so they had a kind of bond you can only get from relying solely on one another. 

Todd (the peace keeper) has his heart. He loves people deeply and is even slightly sappy. He trusts people quickly and without question. But mainly he loves his children and the rest of his family more than anything in the world exactly how Dad did. He also will do whatever he needs to do to provide for his family just like Dad. Of course I have to mention he also loves football except he's a UW fan while of course my Dad was a USC fan... There was tension during certain games but I think the bond of football kept them even closer. 

Jeny (the sweet and sassy one) is the most like him in my opinion. She got my Dad's gift/ curse of extreme generosity. She has a laugh that is reserved but once it arrives it won't stop. She loves to be with people and have fun but she also needs tranquility occasionally. She has his sense of independence and spontaneity. She cares so much about her job and always goes above and beyond using that Jamie Tindall  work ethic. But most of all she has his unwavering faith and truly strives to live the life God wants her to. 

Then there is me. The baby. Deni (the funny one). It's weird to write this about myself but I have a rare combination of cockiness and modesty that makes me think I'll manage... I use fun words even if it's used incorrectly. I make up words and stories and I give everyone nicknames. I live to make people laugh and feel genuine joy in my heart when I succeed. I have a quick wit that would occasionally surprise my Dad, making it even funnier! We also had similar taste in food and I loved hearing good reviews from him for my cooking because the man was pretty brutally honest. 

 (Side note... Zach is a lot like my Dad in many ways too. The saying that you marry someone like your father is apparently true...)

I also see him in his Grandkids... 

Macy got his humor although she's still refining it 

Carson got his athletic abilities 

Tayte got his big, pure heart.

Landon got his adventurous spirit

Titus likes to share his opinion on every topic but also has quick whit

Elliette got his independence and his ambition! 

Most importantly my Mom. She puts on a brave face but I see her eyes fill with tears occasionally. I see her big heart grow even bigger even as she mourns. She's trying to learn what life is like without him, her husband of 34 years. 

So all of us are down here with broken hearts covered with band aids waiting for the day our hearts will be healed and we're with him in Heaven. 

Maybe they celebrate "entrance into heaven day" similar to how we celebrate birthdays. Maybe heaven is so wonderful that there is no sense of time or special days because they're all perfect. Maybe he's up there dancing with a full heart knowing that he's in his eternal home and the people he loves so much will join him some day. Who knows what it's like but as long as our faith sustains us through this and so much more I am confident we will all be together again some day.

My ache. The hole in my heart that he once filled. The intense longing to joke with him and just be with him. The pressure to talk about him and tell stories about him so that Titus won't forget him. Realizing he's already missed so much and it's only been one year... These struggles are so difficult and painful but the joy that comes with knowing that he is in paradise and his heart doesn't lurch with pain when he thinks of us like ours do for him, somehow makes everything easier. 

Finally... I wanted to share the song that i always thought of him when I heard and it ended up being the song he and i danced to at my wedding... Every word is so true. 

https://www.youtube.com/watch?v=Ve4XD4LveU0

This is a dual purpose kiss! I love you and thank you for paying for our entire wedding and honeymoon! Ha, 

One of my favorite part of my Wedding Day! I wish I knew what I was laughing about! 

B String Symptoms

I've been sick for a really long time. I'm 28 and I first starting having symptoms when I was 12 so that means I've been sick for more of my life than I've been well. I don't even know what it's like to be a "normal" healthy adult. 

At first I just said "my stomach hurts" because at 12 every thing in that general vicinity is your stomach. After ruling out anything GI related my pediatrician sent me to a gynecologist at the incredibly tender age of 13. Though I went to dire straits to boycott this terrifying appointment, it ended up not being so bad. After medication and eventually a laparoscopy I was diagnosed with severe Endometriosis. Before my beloved ob/gyn retired last year he said he never did see another case of such a young girl with such aggressive endo. 

Anyway. After another year of treatments I started noticing the symptoms were changing and I was also having urinary symptoms. So at 15 we did some rounds to find a good urologist who would take me on with my complicated symptoms and age. Finally we found a good one.

She quickly diagnosed me with interstitial cystitis then we began the arduous journey of battling IC. 

Symptoms came and went, treatments helped and failed, there were lots of highs but even more lows. 

We blamed any weird, seemingly unrelated issues on medications or just my body fighting back after years of pain.

Things spiraled out of control until I found myself 28 years old with no uterus, ovaries, cervix, bladder or urethra. The doctors had run out of treatments so the only thing to do was remove the diseased organs out of my otherwise (seemingly) healthy body. 

There were side effects and complications as is expected of major surgeries and reconfiguration but we kept moving forward expecting these bizarre, write-off symptoms to go away eventually. 

And yet. They didn't. Here I am a year after my last major surgery and I'm still struggling man. I have all these symptoms that I never focused on because I had bigger, badder things to worry about and it was easy to brush them off after dousing them in blame from other things. 

I was literally taking a bucket full of medications just a year ago but now all I take is a half of a Valium for muscle tension and 2 Benadryl for nausea and to help me sleep so these random things can't be blamed on meds. (Admittedly I did just stop taking hydroxazine as needed for nausea and I took off my scopalamine nausea patch to see if that helps with these creeper symptoms.)

I'm still having nausea and diarrhea daily which can be shooed away with the fact that I had two intestinal surgeries within one year. Oh and I'm gaining weight faster than a Jr. High wrestler trying to hit the next weight class. 

Then I have weird ghostly symptoms like urgency and the feeling of a full bladder even though it's literally an empty cavern in there... Occasionally I have horrible urgency like I have to pee, sometimes I will go as far as sitting on the toilet or taking a shower to trick my body. I also get regular flank (kidney) pain and swelling. These all might be phantom pains but they could also be signs of UTI's... Yes you can still get a UTI without a urethra or bladder. If you want more info about that, give this blog a quick gander... 

http://how-ic-it.blogspot.com/2015/09/i-planned-on-writing-blogs-detailing.html

I also have occasional fevers, thick, rank urine and unsatisfiable (I think I made that word up but I like it) exhaustion. No clear explanation for that.  

Then! I started really noticing a symptom I've had for years but have always blamed on medication or treatments. However I wasn't on those anymore and I was still having these crazy episodes. It usually starts with my toes, they curl up and spasm in all sorts of wonky ways. I try to make them do it on my own when they're relaxed but I physically can't make them do what these spasms make them do. All my toes go in different directions, one twitching while the others stay stiff, etc...  It's like they're possessed. Then it travels up to my calves creating horrendous Charley horse like spasms. 

Then I started noticing how regularly at least one part of my legs and/ or arms are numb or tingling. I have always blamed that on bad circulation or whatever and never paid much attention to it but once again, these little things starting sticking out to me. 

I wasn't too concerned about these seemingly minor things until I started falling. That's right, I am just minding my own business standing or walking when suddenly my legs give out and I'm on the ground. It's not a big dramatic fall from some Melissa McCarthy comedy. I literally just drop down like I'm in the ghetto hearing gun shots. 

My hands also have had weakness causing me to drop my colored pencil mid color while coloring a bright jungle scene in my grown up coloring book... Don't get me started on my increased inability to open barely tightened bottles. In the ghetto. (I liked the previous ghetto mention so I'm going with it... keep up.)

So what's a girl to do?! I went to my primary care physician who has always been great! He treats me with respect, knows I'm not a drug seeker (he saw me wean from 25 morphine a day to 0 in 6 months on my own), and he knows how much I want a real life. So when I presented these "new", actually old just ignored, symptoms with tears in my eyes I expected a light bulb and an instant theory that would not just explain the recent additions but the last 16 years of constant health issues. 

Not so much.

He kind of ho-hummed for a while, reminding himself out loud that I wasn't crazy and then said he really didn't think it was anything neurological but it was worth testing. For the first time in his office I started to get that horrible, humiliating creepy feeling that I get when healthcare professionals start to categorize me as a kook when he brazenly mentioned an antidepressant. 

If you know me or you've read my blogs before then you know how Ludacris (yes I know it's spelled ludicrous but I'm a millennial and early 2000's hip hop (not to mention The Fast and The Furious) will forever live in my soul)  it is that I would need an antidepressant.... It would literally be like giving a chubbier, less glamours but equally spunky and snarky Miss Piggy antidepressants. Some how I feel like my husband might disagree with that comparison... Comments babe? 

Anyway! When my PCP saw the panic, fear, sadness, defeat... Whatever flashed in my eyes when he gave that offensive offering of antidepressants he quickly said first we would rule out damage to the nerves and the majors like MS and ALS by doing a nerve conduction study. 

I felt a weird shred of hope. I didn't want these lifelong, horrible, debilitating disease but I also didn't want to be miserable without knowing why and I really didn't want to be labeled by the one doctor I thought I could still trust. 

Well. That shred of hope was ripped into a million tiny shreds as I had the test today which came back completely normal. Hooray! I'm not dying and I don't have a degenerative neurological disease but what the (Grandma close your eyes) H-E-Double Hockey Sticks is going on then?!

I walked out of the exam room where they did the nerve conduction test that made me feel like I was an inmate being shocked for practice on death row.  

Humiliation and defeat overwhelmed my senses. Sounds were mumbled, faces were blurry... Life hadn't changed at all but I felt like I was just delivered a sentence. Not a death sentence because at least that would be over relatively quickly, this was something more cruel and deserving of only the most vindictive, repulsive sorts. A lifetime of unproved, undiagnosed, untreated pain and symptoms. 

I kind of lost it for a few hours. I withdrew into my personal turtle shell and shut everyone out. I slunk out to call my PCP to see what was next (he had briefly mentioned an MRI at my last appointment) but I wish I hadn't because for some reason the nurse didn't put me on hold... She just told my PCP that the nerve test came back normal with me just an airwave away. I heard him mumble and the nurse repeated what he said as he said it "it's probably just in your brain.... Not that you're crazy... Ha. Ha. But ya know, you and your body have been through a lot... Let's schedule a follow up." 

For the first times I didn't happily thank her for her time and toss out frilly salutations, I just hung up. 

Then I sobbed.

Like, boyfriend broke up with me a week before prom kind of sob. Like, suddenly realizing my son is going to grow up and marry a girl and I'll be useless to him and I don't even have a daughter who will still visit on holidays kind of sob. Like, Parenthood finale kind of sob. Primal devastation. 

That was about 12 hours ago. I'm doing slightly better. I'm not sure why. I spent about 3 hours having my pity party in my turtle shell and then I just kind of moved on. It's just another hard day in this life I've been given. I would be lying if I said there wasn't a moment today I was thinking death would be such a lovely departure from it all... Not that I was suicidal, I just can't stand the thought of 60 more years living like this.

I know this was just the first step of this whole new diagnostic process but I'm scared the my PCP is going to give up on me or just go with the easy out and pin the giant "W" on my lapel... Whack Job. 

Unfortunately this is such a common problem in the IC/ chronic pain community. The doctors are stumped so they stick us in a box of whiners, attention/ drug seekers, worry warts, hypochondriacs, low pain tolerant wussies, and apparently geniuses who can create physical symptoms with our minds.... Then they just move us along with a condescending pat on the head and reminder to drink lots of water, not dwell on the pain (that they put in air quotes in their mind), and to be active! 

By the way... Not that it's related to this blog... Well I'm not sure what would be related to this Christmas light cluster of a blog but I thought I would mention... I know I've told you in past blogs about my aversion to hospitals, especially ER's so I think I am fighting another UTI on my own as I wait for fever and vomiting so that I'll know for sure that it's full blow nephritis or that it's gone septic so they will take me seriously. Maybe that makes me stubborn or stupid but I'd rather feel that than how they make me feel when I show up with "colonized bacteria in my urine and a high sensitivity to pain"... As far as the muscle symptoms and falling, I don't know. 

So. 

I'll just keeping doing what I've done for 16 years and take it day by day. 

Ugh. Sorry for the lengthy, dreary post. I live in the Seattle suburbs and it's February... Surely I'm allowed one blog to match the weather. 

To end on a lighter note... A funny Titus (my 4 year old son) story... He was eating a sucker and I asked for a lick... He looked at me kind of weird then shrugged his little shoulders and stuck his tongue out as he started to lick my arm... I was laughing so hard I could barely tell him that I meant I wanted a lick of his sucker not for him to lick me! He's such a sweet, silly boy... He makes the grind of each day so much brighter with little moments like that! 

Worcestershire Sauce.

Over the years of being bed bound I have racked up hours and hours of Food Network watching so any time I'm up to making the long trek downstairs I can't help but cook something! I've come to love cooking and experimenting with recipes until they kind of become my own.

One such recipe is my teriyaki sauce. People often ask me for the recipe and I basically list the ingredients with the quantity simply listed as "to taste"... i.e. Soy Sauce- To Taste. I don't use pedestrian implements such as measuring devices.

One day I was whipping up my sauce, just going through the familiar motions but when I tasted my sauce to decide what it needed I was appalled! It was disgusting! I added CUPS of brown sugar and water to try to balance the incredibly inedible saltiness. I wasted all sorts of things as I tweaked my sauce but I just got further and further away from my familiar, delicious result.

Finally I noticed the bottle of soy sauce was still in the fridge... I was using Worcestershire sauce. A dash here and there is great but half a bottled mixed with various Asian ingredients and copious amounts of brown sugar... Real bad.

I bet you're wondering what in the world this little glimpse into my life has to do with anything... Bear with me.

I spent so much thought and time trying to fix the issues of the sauce that I didn't even consider the big picture. I thought it was too salty so I added sweet, I thought it was too pungent so I added flavorless water. I never once considered there was an actual problem that was causing it all.

This is what my doctors and I have been doing with my rattletrap of a body. We focus on all these weird, isolated incidents and symptoms but we have never looked at my body as a whole to see if maybe there is a a greater malfunction or problem that is causing everything!

What a bunch of dodo's.

Let's just talk about these symptoms... Going as far back as 12, I had severe chronic lower abdominal pain and urinary symptoms. Since then things have developed like constant nausea, severe fatigue, restlessness, extreme sensitivity to any pressure, blurred vision, muscle cramping, muscle weakness, falling, passing out, numbness/ tingling, of course continued pain, and on and on....

We've always had something to blame it all on... Medication side effects, recovery from surgery, complications, etc... But now here I am, off of my meds, not currently in any medical crisis and the symptoms continue. These aren't just symptoms that should be ignored or downplayed. I should not be falling or having regular uncontrollable muscle spasms.

So. By George. Maybe we should look into the WHOLE picture that is Deni's whackadoodle body.

Looking at the symptoms my doctor thinks it may be neurological so we are starting there. I am having a "nerve conduction test" done next week which sounds like a secret, truth producing torture where they put little needles into my nerves then send electric currents through them to see if and how well the jolt travels through my nerves, basically testing for nerve damage. Sounds like fun.

There is also the autoimmune path that we might explore depending on results from that torture and other neurological testing they might do. I know that IC is a relatively young disease and the consideration of it being an autoimmune disease is a pretty new theory but if that's the case it would make sense that I would have other diseases under the autoimmune umbrella.

It's hard being a frontier of this disease but I am thankful for any forward motion that is happening... I wish more doctors would stop looking at each symptoms and look at us as people, as patients, as a whole. I also wish that we didn't have to be afraid of being judged or categorized as paranoid or attention/ drug seeker every time we bring up a new symptom because maybe if a doctor would trust us and listen to us we would start these processes and find answers easier and faster!

I'll keep you updated but learn from my mistakes... Mention ALL of your symptoms to your doctors, don't just write them off because it's easier. Your body makes symptoms to alert you that something is wrong, like sending a distress flare from a life raft in the middle of the ocean... Don't ignore the caution flares because there are distracting fireworks nearby. (I really wanted to end it on that and just have people read that sentence over a few times then shake their head and blame it on my quirkiness but I have to acknowledge that was a stretch even though I'm not going to change it. I rebel in small ways to make myself feel in control of my life. I'm working on it.)