The curtain falls...

In December I sat in a hospital with dry eyes, an empty void where my emotional heart used to beat and only submission in my mind. After years of being told that I was strong and brave I was proving that to be wrong. I had given up. Given in. For 17 years I had fought with and against doctors who told me my symptoms were in my head but I couldn't do it anymore. I had accepted that they must be right. 

I had nodded my head, consenting to being transferred to a psychiatric hospital for intensive therapy. So that's what I was doing at that moment... waiting for transfer paperwork. You'd think I would have been questioning my past, my family, my life, who I was but no. I was empty. No thoughts. No feelings. Just numb defeat.  

Then a beautiful, young woman walked in with a big smile. I assumed she was the one there to tell me what to expect and where to sign but she asked how I was doing and after a few minutes of casual chit chat she sighed. Before she could say another word I realized she wasn't just being friendly... She had been analyzing me the whole time. She was a social worker there to determine if she agreed with the doctor's recommendations. 

Her face was painted with care and genuine concern. She said she was there to do an assessment but she could already tell that I did not belong in an inpatient psychiatric hospital. Even with in my defeat and acceptance that I was crazy. She said she would have a psychiatrist do a consult but she was going to strongly recommend against transferring me. She felt sure that being in that environment would be more traumatizing to me than anything else.

Sure enough the psychiatrist agreed with the social worker, she said some counseling could be good for my quality of life just because I had been through so much but she saw absolutely no reason to send me to such a facility. 

The doctors discharged me with a shrug, orders to see more specialists, and a stack of prescriptions. I don't think he really cared either way, I just wasn't his problem anymore. 

I had no intention of seeing more doctors. I was done. I would take the medication because the alternative was worse but I wasn't about to spend what little bit of energy I had and the huge amount of risk of more humiliation to have more doctors concur that I was, in fact, crazy. 

The numbness continued. You would think I would have been happy to be home but nothing had changed and I had no hope of any changes. I retreated to my bed like a snail into his shell. The drugs literally sedated me and I just laid there in fear of it happening again! 

Of course it did but each time I suffered through and refused to be taken back to the hospital or see any other doctors until I had no choice... 

I was walking back to my bed after taking a shower when next thing I knew I woke up naked and every muscle was in total spasm. Then I started convulsing and thrashing around. My jaw locked up, my tongue spasmed and choked me, I was completely unable to swallow or speak, foamy drool dripped out of my mouth and tears ran down my face. My 5 year old son covered me in every one of his special blankets and my Mom tried to pour the liquid lorazapam into my mouth but it sputtered out and the violent spasms continued for an hour until I started struggling to breath and I finally blinked consent to call 9-1-1. I was so tense and spasming so hard that the paramedics couldn't start an IV so they just kept jamming shots of various medications in and even though I tried to protest next thing I knew I was being carried down the stairs in a sheet while my body continued to jerk and the only noise was me choking and grunting...   

I was worried about my son seeing all of this but I heard a fireman thank him for his help and tell him to call them in 15 years and they'd sign him up, then I saw the blurry lights and blaring sirens... The rest is kind of a blur. 

At the hospital they pumped me full of all sorts of medications to try to get my body to relax. My mental and emotional numbness continued, I truly didn't care anymore, I just wanted it to stop so I could sleep. After over 24 hours of spasms that caused my whole body to alternate between planking and doing sit ups I was exhausted. Eventually they figured out a medication schedule that kept drugs in my system continuously and the spasms slowed way down. Of course they read my chart. I knew they read all of the negative test results of all the tests that could explain what was happening and my history of "faking it", my labels as a "drug seeker" or an "attention mongrel" and at least a couple of diagnosis' of "conversion disorder" which basically meant my body was creating these spasms because of stress. They kept me for a couple more days, giving me the medication as scheduled- no more, no less. I still couldn't swallow or speak after a few days of being there but when I heard a nurse whisper to my Mom that I faked passing out on a "walk" that she mandated, I was done. I wrote on my clipboard that I wanted to be discharged and after the same psychiatrist cleared me, the hospital doctor happily complied. 

I got home, more defeated than ever before. I accepted that I was crazy. So crazy that I didn't even know I was crazy and I didn't know how to stop it. At my lowest point I cried desperate tears as I asked my husband how many morphine it would take to kill me.

He took away and hid all my meds then I laid in his arms as we both cried in defeat until we fell asleep. 

The next day I called the social worker and my primary care doctor... They set me up with a counselor that could do Skype style appointments until I could see the psychiatrist who specialized in conversion disorder. If I was crazy then I wanted to fix the crazy! If it was anxiety or stress then I wanted to fix that! 

None of it made sense... I didn't know how any kind of emotional or mental state could create such a uncontrollable physical reaction but I didn't know what else to do. 

The first couple sessions with the counselor were useless! I didn't understand... It's not like I was just going through a tough break up or something... I was apparently so crazy that I was making myself choke on my own tongue... Why were we "taking it slow and one step at a time"? I just wanted to get to work, whatever that meant. Then she made a face, maybe a slight eye roll, when I mentioned something about my faith and she explained that her healing approach was based on Buddhist philosophy... Considering this was my 3rd session and we hadn't even talked about anything remotely "healing" I figured that was as good of a reason as any to stop wasting my time... No matter how much my own faith was wavering.

So there I was at home. Given up again, terrified and so confused. 

Then I got a reminder call that I had an appointment with a cardiologist the next day. Before all of this had escalated to hospital stays and thoughts of straight jackets my neurologist had referred me to him even while telling me it would be fruitless and was just to rule more things out. I really didn't want to go. I was still convinced I was crazy. Or something. But I suppose the subconscious desperation, and my Mom, forced me to go. 

As soon as the doctor walked into the exam room and sat on the stool to scroll through my charts I felt the bile of shame rise up as I knew he was reading my labels. However I didn't see that in his eyes when he looked back up at me. He asked me some questions about passing out. When it happened, how quickly I came to after, if there is any pattern and he even asked my husband what he sees when it happens. Then he asked about my blood pressure.  Although the other doctors occasionally asked me about it they always said it was a symptom or side affect of something else, they never focused on it. 

This kind, gentle doctor did. 

He, himself, took the time to manually check my blood pressure. He made a smart person musing sound then asked me to stand up and he checked it again and again and again. He asked me a few times if I felt steady. I told him I was dizzy but okay. My husband stuck his leg out as a cushion if I fell... He's a gentleman like that... Finally the doctor let me sit back down. 

He asked me more questions about random symptoms like nausea, sleepiness, dehydration, and dizziness (yes, yes, yes, and yes) then announced that my blood pressure had been extremely low (70/40 I think) when I was sitting but once I stood he couldn't even find one. 

He said he thought I had an adrenal insufficiency that was causing low blood pressure that dropped to extreme lows when I stood, walked around or exerted myself in any way. He explained that with every thing my body had been though it made complete sense that when my blood pressure would bottom out like this it would cause all these symptoms... Including the spasms! Using normal people talk he explained why this condition explained every issue and answered every single question. 

The doctor prescribed me hydrocortisone to increase my blood pressure and said to follow up in a month. In less than a week I was already feeling better! I was dubious and cautious but I felt up to getting out of bed for the first time in months. I stayed upstairs for the first few days but not long after that I was able to venture downstairs! I got overzealous and pushed myself too far a few times then passed out but the spasms were manageable with previously prescribed muscle relaxers. 

My psychiatric appointment arrived and I canceled, along with all upcoming appointments with robot Buddha counselor. (I have nothing against Buddhism, I do however have something against mental health professionals casting aside your beliefs and pushing their own. Especially when the patient is in such a fragile, vulnerable place...)

I started to learn to listen to my body and sit down when I feel the slightest bit dizzy and have help when getting out of hot water (for some reason that knocks me out every time if I'm not careful... I have the bruises to prove it). I've also learned that salt is my friend! When I'm craving a pickle, I eat a pickle. 

Don't get me wrong, it's far from perfect. Just today my blood pressure was 90/40, I felt weak and dizzy all day so I stayed in bed. The doctor had warned that after a month or so we might need to adjust the dose of the medicine so I'm assuming that will happen at my follow up on Friday but overall the progress has been incredible!! I'm off of all the anti-seizure meds and multiple muscle relaxers yet I haven't had a major spasm in about 3 weeks. 

I went from hospital or home bound to being able to venture out a bit within a couple weeks! In the last month I was able to go to the mall with my husband and son, I saw my niece crowned daffodil princess (it's a local tradition thing), I went to my aunt's baby shower, and I've had some visitors over! Best of all I have been able to just be downstairs with my family almost daily! I've even cooked a couple meals which is not only my favorite hobby but makes me feel productive and useful! 

On Friday I should also find out more about the cause of the low blood pressure, because the hydrocortisone worked my guess is he will conclude that it's Addison's Disease and refer me to an endocrinologist... Which by the way, would also explain why after having a complete hysterectomy 3 years ago I have had multiple positive pregnancy tests (before you ask... I didn't take the test. They do routine pregnancy tests at the hospital) and why my body started creating breast milk.

It makes me sad that I lost all hope, drew in, questioned every person in my life's intention, shut down, truly wanted to give up and questioned my faith. 

Looking back I see God in all of this. I see His love, grace and forgiveness but also His pain as He watched me go through it. I see, no matter how many times I didn't grab on, His persistent hand reaching out to pull me up. I see how He used the last few months to strengthen some of my most important relationships. I see how He used my wavering faith to eventually strengthen my faith. I see how He used people in my life to get me to see all of this...

I was just organizing stacks of things that have been ignored for months and I found a little book that a dear friend made and gave to me full of life giving verses. I don't even remember receiving it or if I read it at all but I obviously just tossed it in the pile along with get well cards, bills, and barely attempted crossword puzzles. 

This time when I read it, it brought me joy and peace. This in particular hit me like a ton of bricks... "I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them." Isaiah 42:16

He lead me and He did not forsake me. Just like He promised. 

I know I have not been open about everything that I have been going through lately but I hope you now understand why. I was so lost and afraid, I didn't realize that even after I had answers and hope for my health and my life I was still cloaked with the darkness of guilt and shame of everything... Of all that I thought, doubted, gave up on and went through. Once that lifted I could see myself and my life more clearly and the newly dashed windows made me want you all to see me, as I truly am. 

This is as vulnerable as I can get... I hope by sharing my story my loved ones will continue to love me and know me and that those also going through the obstacles of chronic health issues might learn from my mistakes. 

I am not afraid anymore. I will not allow people with the letters d and r before their names dictate my life based on their own ignorance and insecurities. Every nurse and doctor that had criticized me had checked my blood pressure and ignored the alarmingly low numbers. Truthfully I think they made their decision about me after reading my chart, there wasn't much that could have convinced them to look for a real cause or solution. 

I know most of you reading this have interstitial cystitis and this doesn't seem to apply but it does! Trust yourself. It's your body and you know it best, don't let doctor's tell you that your instincts are less reliable than test results. Also, don't let them blame strange symptoms on your IC because unfortunately IC loves strange illness and ailments to come along with it but often times those can be treated easily! 

Don't confuse who you are with who a medical chart says you are.

Rise up. Fight. Trust. Don't give up. Know who you are. Have faith. 

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.)

My New Normal.

Since I've crept back into the world of IC I have been asked regularly about my experience of "getting my bladder removed". It's a touchy subject and I tell different parts of my journey to different people based on where they are at in their own IC saga. However with the anniversary of the beginning of the end of my bladder's life just yesterday I thought maybe I would share my whole story.. The good and the bad, the gross and glorious, the expected and surprising... All of it.

Brace yourself.

Settle in.

Do you need some refreshments?

Okay, ready when you are....

Action.

It all began on a cold, dark morning... Okay that's a little drastic. New beginning.

On December 30, 2013 what started out to be a surprisingly typical day for me ended up being a day that would forever live in infamy.... Maybe a touch too dramatic but let's leave it just for the flare...

I was headed in to the OR once again.. for my 26th surgery. They were going to do a hydrodistention (stretch my bladder by filling it as full as possible with water), inject my bladder with a whole bunch of botox (to keep things tight to help with incontinence), laser off any new hunners ulcers, and remove my two interstims (neurostimulators that were placed in my low back to theoretically help my bladder's dysfunction but hadn't been working for a long time).

It started like any other surgery day... Get to the hospital at 0 dark 30 (I have no idea what that phrase means...), change into a gown, answer a billion questions, confirm my identity and allergies, get an IV in my ridiculously hard veins that have been used and abused over the years, settle into the pre-op bed and then wait for the flurry of nurses and doctors to come get me when they were ready... 

However when the anesthesiologist showed up I could tell something was off... She glanced at my chart, acknowledged my warning about predictable post-op nausea and vomiting then declared I would not be having general anesthetic. She was going to give me a spinal and put me in a "twilight"... I was very concerned.

As a general rule I don't like change... Especially when it comes to certain traumatic topics. One of these such moments came years before when I was actually having one of my interstims revised... The anesthesiologist used a similar technique with this suspicious "twilight" except when I woke up in the recovery room, I remembered so much of what had happened to me in that cold, white room. I remember the feel and smells of my body being sliced open as my doctors casually chatted, I remember them searching for the right spot for my interstim lead to go, I remember my doctor asking what time it was then saying something like "well this will just have to do...", I remember crying, screaming, reaching out for someone to hold my hand... Then it was all dark again...

So needless to say I really just wanted them to fully knock me out this time... I didn't care if they did it road runner style and dropped a bolder on my head, I did not want to remember a single thing.

But on this day in December this young anesthesiologist had something to prove. So despite talking directly to my urologist, the surgeon preforming the surgery, and my desperate pleas... She decided to give me a spinal and some light sedation.

Well... The surgery went fine however after I woke up I was unable to empty my bladder, like at all! Not even a drop. They scanned my bladder and it had over a liter of urine stuck inside but no matter what I did I couldn't get it out.

I was never able to urinate on my own ever again.

I don't know the reason... Maybe it was just a coincidence, maybe too much botox, maybe the spinal, or maybe it was from removing the interstims... I don't know. No one knows.

My urologist and I spent 3 brutal months trying to patch up my bladder to at least the level it had been before that fateful day in December but it was to no avail. It got to the point where I wasn't just fighting for my bladder to work again... I was fighting for my life.

The various substitutions for urinating as God intended were each more horrible than the last... Feel free to read some of my blogs I wrote at the time... 

http://how-ic-it.blogspot.com/2014/01/diary-of-mad-ic-patient.html

http://how-ic-it.blogspot.com/2014/01/hell-cath-not-fury-like-ic-patient.html

http://how-ic-it.blogspot.com/2014/02/super-pubic-to-rescue.html

My beloved urologist who had been by my side since almost the beginning didn't know what else to do for me. My bladder was essentially a dead, useless organ inside a healthy body waiting to live. The only possible option I had left was to remove the diseased sack that had been torturing me for most of my life.

There was no begging, no convincing, no proving, no contemplation... It needed to be taken out before it took me out. 

So I went to the premier oncology urologist in the state at the University of Washington. He told me he did not do diversions at all, they were far too risky, he took bladders out he did not make new ones. He did some research, talked to my urologist, sent me to some other specialists and then he agreed. We had to remove my bladder and my urethra.

In technical terms I had a radical cystectomy with an ileal conduit. He was able to do it robotically through a few small incisions and then a little bit bigger one in the shape of a hook around my belly button that he actually pulled my bladder out of. The doctor couldn't believe how horrible it looked once they got it out, it was truly ruined and diseased and did not belong inside of me anymore.

Once they removed it they needed to create a new way for my body to release urine... So they created a little extension that went straight out of my low abdomen using a piece of small intestines... 

These charts really helped me understand things... I had it done to me and I still can't explain it very well... 

Typical Urinary Tract

Typical Small Intestines 

My new urinary tract. Kidneys, ureters, then ileal conduit, then stoma. 

The recovery was brutal. Here are some of the blogs I wrote during that time...

http://how-ic-it.blogspot.com/2014/06/oh-horror.html
http://how-ic-it.blogspot.com/2014/06/carry-on-baggage.html
http://how-ic-it.blogspot.com/2014/06/i-found-hope.html

As the months passed I grew more frustrated by the debilitating abdominal pain I was still having. Everyone blamed it on surgery side effects but my small town physicians assistant had the wisdom to send me to get a CT scan just to be sure... They found a major obstruction in my small intestines where they borrowed the piece for the conduit.

I spent the next 10 days sicker and in more pain than I had ever been in my life. The blockage was so severe that I was actually vomiting poop because it had no where else to go. They jammed a tube down my nose and into my stomach that was constantly sucking up waste but it couldn't keep up. They put me on strict "bowel rest" which meant no food or water and constant draining from the NG tube until the blockage cleared. The tube was unbelievably uncomfortable and make it impossible to speak or even swallow.

But finally it worked and the blockage was cleared.

However little did we know at the time, we had just fixed the symptoms not the greater problem.

Months later thanks to a no nonsense, straight forward, yet completely lovely and kind surgeon they found a stricture in my small intestines. Which basically means that when they took that piece of intestines out then restitched it back together, they did it too tight so there was a narrowing that things kept getting stuck in.

So in January... A year after this nightmare began they sent me back to the OR and opened me up with a mid line incision (from above my belly button down to my bikini line) and they untangled my gnarled intestines, cut out the narrowed area and then repaired it so it was wide enough for things to easily pass through.

Almost the full incisions after the stitches were removed...

That was another hard recovery.. I was taking around 20 morphine a day and I was still barely functioning from the pain. Eventually, thanks to an awesome pain management, post-op, and physical therapy team I got off the meds and was finally on track for a healthy life!

Then that frilly, dreamy, healthy life came to a screeching halt as nausea, pain and other weird symptoms starting showing up fast and furiously. It didn't take long to find out I had a UTI  (yes you can still get a UTI without a bladder...) that turned into a nasty case of nephritis aka a kidney infection. It took weeks, so many rounds of trial and error, dozens of doctors, several antibiotics, two hospital stays and some out of the box methods to finally tame the infection. 

While I was in the hospital I had some fancy shmancy infectious disease doctor that everyone treated like some world renowned king of the doctors but the only thing royal about him was his jerkiness (I'm so good at insults). He was sure that I was either a drug seeker or a crazy person who was desperate for attention or perhaps it was all in my head. Don't worry... He documented that in my charts. Helpful.

Thankfully, once again my dear physicians assistant saw past the malarkey and trusted me enough to dig deeper into the issue. Dr. McEnroe (the super mean ID doctor's name was similar but I called him that because of the infamously sassy tennis player) was so sure I was wrong about my infection that he took me off of all antibiotics so when my PA tested my urine he actually found out I had two kinds of bacteria in my urine. The problem had been that they would test my urine and it would show e-coli so they would put me on the antibiotic for that but then when it wouldn't get better they would test it again and they would find the enterbacter bacteria and change my antibiotic. Round and a round we would go... Never fully killing the infection before changing to the other antibiotic. So actually if it hadn't been for that dipstick doctor who knows how long it would have taken to figure this out. A blessing in a very good disguise.

My PA put me on two kinds of antibiotics at the same time (one of which I am allergic to and am forced to take Benadryl with to keep from getting covered in hives but it's the only one that works) and FINALLY I felt better! Like totally fine! My PA wanted to check my urine just to see so I happily dropped off what I thought was a perfectly clear urine sample (it didn't smell, didn't have any gross chunks floating around, and was even a lovely light yellow color) but just a few days later I got a call from the nurse telling me that my urine came back positive for bacteria.

I was so confused and frustrated. What in the world did that mean?!? Thankfully I got in to see my PA and he explained things to me... When they introduced the piece of intestines into my urinary tract (the ileal conduit, refer to the chart above) they also introduced bacteria into a usually sterile system (your digestive tract is not sterile while your urinary tract is). So for some reason a whole colony of bacteria decided to take up residence inside my crazy, redneck modified urinary tract. He said this was actually okay and I could live with these bacteria in there as long as they just remained calm and didn't turn into infections.

This is pretty much what I asked him... "So is it like hobos? Like we acknowledge that no matter what we do they are going to be around so we might as well give them a tent city and as long as they live peacefully they're welcome to stay? Controlled chaos basically?" He paused for a moment then in a very respectful way said something like "I don't think I would have ever put it like that but I guess you could say that. Sure."

Good. I had a whole tent city of bacteria and as long as they were happy, I was happy.

They kept their end of the bargain for about two months but then my maintenance of their little village started getting a little lax. They didn't care that it was December and I was busy... They needed rest, hydration and low stress to keep their little society functioning! After a few weeks of not having their demands met they went into full on protesting riots.

In other words. Those happy bacteria multiplied and got serious causing a big time infection. Thankfully we had a plan. After 3 days of serious symptoms I went straight to the pharmacy and picked up the two antibiotics that had neutralized the infection before. After a few days of rest, water, and the almighty antibiotics I started feeling better! Phew! The bacteria tucked themselves back into the confines and all was right in the world of my urinary tract.

Of course nothing worth writing about ends that easily... As instructed I was going to finish my full round of antibiotics even though I was feeling much better. So one night I took my fistful of meds including the antibitoics, Benadryl and my nightly Phenergan to calm my ever present nausea. The next morning I woke up feeling a little tense and my throat felt tight. I assumed it was because of the allergy to the antibiotic so I took another dose of Benadryl as well as another Phenergan.

I thought I would take a nice little nap and wake up just fine so my Mom took my son to school and then was having brunch with a friend when all of a sudden the tension made my toes curl then moved up to my calf muscles and continued until it reached my neck. The next thing I knew every single muscle in my body was clenching and contorting. I had zero control of my body as my head and shoulders thrashed from side to side, my back arched, my legs tucked under me. I picked up my phone with my fingers tensing and releasing like spider legs and clumsily dialed 9-1-1. I calmly told them I was having an allergic reaction. I hung up then called my Mom telling her the ambulance was on it's way.

I had what's called a Dystonic reaction which is kind of like a mix between a seizure and a bad episode of Parkinson's Disease. After a shot from the epi pen, loads of Benadryl, steroids, tons of muscle relaxers and an overnight stay in the hospital to make sure my vitals went back to normal I was released from the hospital with the thought that I was now dangerously allergic to the antibiotic and to not take it again. I asked numerous times if they were sure it wasn't a reaction to phenergan because I had had the exact same reaction to 2 other antinausea medications before but the doctors were insistent. 

I was tense and sore from the hours of thrashing like a beached shark but I mustered up the energy to go to a sing-a-long version of "White Christmas" with some of my favorite ladies then I got home and took my nightly Phenergan and benadryl.

The next morning after the benadryl wore off but the phenergan hadn't the reaction started all over again. This time my Mom and my sweet, terrified baby boy were home to witness it. We went through the exact same motions except this time the ER doctor agreed that it was the Phenergan not the antibiotic. He saw the desperation and experience in my eyes and lovingly sent me home with an anti-seizure med and high dose of valium to continue to take around the clock until the spasms stopped.

The medicine made me crazy but sure enough after the Phenergan was out of my system the spasms stopped and I was back to normal! After it was all over I told my husband I wished I had video of myself during the dystonic reaction and he shook his head and told me I did not want to see that. He said it was like something out of "The Exorcist" and was terrifying to see. After thinking about it I do remember being between "episodes" and my muscles were shaking from sheer exhaustion and I panted as I saw the fear in my Mom's eyes...  Then it would start again so they would inject me with a shot of something and it would stop again... Thankfully I don't remember too much more than that.

Things went back to normal eventually, of course that only lasted a couple weeks... Those pesky homeless bacteria noticed that they didn't get the full anti-riot treatment (because they had me stop them in the hospital when they thought that was causing the reaction) and they weren't having their high demands met so they started up again.

That leads me to today. On day 3 of a really bad version of the same old infection. Flank and abdominal pain, exhaustion, nausea and vomiting (I miss you so much dear Phenergan), the urge to pee (I know it doesn't make sense...), and the rancid smelling and looking urine. I just started the antibiotics and hopefully after a few days of copious amounts of water, rest, and the antibiotics I will be back on track.

In the meantime I'm missing out on family time at the cabin for New Years... I can't believe this whole thing, when my IC went from chronic to life threatening, started 2 years ago! I can't believe that this is the life I lead now... Pampering and maintaining a village of bacteria, always in fear of them flipping out and disrupting my life with infection mode.

Maybe some day we will figure out a better way... Maybe we won't. Some days I can find the thankfulness for the good days that are so much better than the bad ones I've had over the last 2 years. Some days I am just angry. Some days I am scared that eventually these bacteria will stop responding to these antibiotics and the infection will go full blown untreatable nephritis causing kidney failure and who knows what else... Some days I'm just happy to have made it through so much already and still smile every day.   

This is how things look now... I've gained weight who knows why, my incision has healed but is still tender and red, and I always have a bag of pee hanging off of me... (This is nice, uninfected pee by the way!)

                                     

While I was in the hospital for the last dystonic reaction, my body forced me into a tiny ball of tense muscles the nurses took turns stabbing me with shots because they couldn't get an IV in and one of the nurses told me "you can do this. You have gone through so much worse. This is nothing. You are strong. You are a fighter. Keep smiling. Keep laughing." Then she made me tell her about my miraculous, blessing of a son while I fought for control of my tongue that was trying to fold back into my throat. It worked. Well it may have been the innumerable shots into my legs, bottom and arms but either way I got through it. Just like I always do.

This is my life now. I will say it again... It's not better than IC, it's just different. It's scarier and worse when it's bad but it's also better when it's good. I hope I can calm the resident bacteria soon enough to enjoy some family time on this special weekend.

Here's to 2016 and whatever it brings...