Opti-freaking-mistic

Tomato juice

Fruit punch

Strawberry lemonade

Tequila sunrise

Capris Sun

I'm not making a drink menu for a diverse party... I'm just describing my pee over the last 48 hours. 

The picture below is not meant for shock value... just a tad bit of validation. 

This wasn't even as dark and thick as it was when I first woke up... Remember, no pity, just validation...

It’s been a hard couple weeks guys... 

I don’t really have it in me to type it all but to summarize... I’ve been to the ER four times, I spent five days admitted to the hospital, they found a blood clot, blood infection and my pee looked like variation of the aforementioned beverages. I am achey, nauseous and have an on again/ off again fever. 

I’m currently curled into a corner of the bath willing the shivering to let up and praying without any actual pleas or even suggestions. 

No one knows what’s causing all this so they are just patching up the holes in the boat as they spring up. 

I see the worry in my moms and husbands eyes so I try to think positive and declare that everything will be fine even though I feel my own fear welling up. 

I’m sorry this is so vague and patchy but it’s all I can do right now and yet I’m compelled to share this on my blog and with my dear readers. 

I know I preach about listening to your bodies but sometimes it seems like mine is speaking Dutch and I truly don’t even know where they speak Dutch... 

I know you’ve all been here. Forcing yourself to be opti-freaking-mistic and taking each day as they come while just posting your arms on the pillars to keep the house from crumbling around you... 

One last thing I think you guys can likely relate to... I have an idea of what could be wrong but I’m so scared of them thinking I’m just paranoid or that I'm playing Dr. Webmd that I’m hesitating to say anything... I don’t even know which doctors are truly on my team or what position they play anymore. 

What a difference two weeks makes... 

Two weeks ago my boys and I went on a little over-nighter to the Ocean... It was bliss. 

Fevered and exhausted. 

(P.S. It feels so good to be writing to all of you again, as soon as I'm feeling better I think I might get back in the swing of things! Thanks for being so loyal and supportive of the ebb and flow of my posts and health...)

Myth Confirmed.

One of the many bizarre things about having a urostomy is being so up close and personal with your urine. All day. Every day.

So when I start to feel a little strange I constantly check my bag to see how the urine is looking. 

I've had some pretty brutal UTI's since my cystectomy... I was unaware that you could even get a urinary tract infection when all your measly urinary tract contains is kidneys and ureters. But I'm here, living my life, as a medical specimen to confuse and push medical professionals beyond their understanding. You're welcome future. 

Because I am lacking so many parts that make up the machine that is the urinary tract it's tricky to catch infections... After a few bouts of being a little overly cautious I found myself doing the complete opposite. I starting ignoring symptoms. 

So this time it took nausea, diarrhea, extreme fatigue, dizziness, increased fainting, abdominal and flank pain, abdominal and flank tenderness, the urge to pee even though it's been over 3 years since I had a bladder or urethra, and a fever before I decide to drag my pathetic behind to the doctor.

Sure enough... I had the worst e-coli infection I've ever had. 

I started antibiotics and started feeling good! I was able to celebrate my 30th birthday with much jubilation and even spend memorial weekend at my Grandparent's cabin with lots of family!

But before I knew it... I was feeling pretty lousy again. I blamed it on the side effects of the antibiotics but when my Mom questioned why I was still on them I realized I had been really slacking at taking them since I started feeling better and was like 5 days behind... Oops.

In my defense! They're huge pills and they smell disgusting! I have to take them with food and I've been having such  a hard time eating lately. But still... You would think I would know better. Shame, shame. 

After a moderate amount of... let's call it... encouragement from my Mom, I finished the antibiotics but I am still feeling almost as bad as I did  before I started these pills that a dog wouldn't eat even if it wrapped inside bologna and cheese. 

I called my doctor and fessed up to my failure and he ordered a double dose of the same antibiotics for 10 more days. Brutal. 

Turns out that old wives tale you hear about finishing the entire course of antibiotics even if you feel better is actually true.

Who knew?

But the real purpose of writing this blog is because I feel really compelled to share something. 

It's like when you take a bite of something that gross and you demand that your loved one's try it as well. Sometimes misery truly does love company. 

Wait. 

Are you eating? 

Finish eating and then come back. 

Ready? 

This is your last chance to stop reading before I gross you out... 

Okay. Don't say I didn't warn ya! . 

A few hours ago I emptied my urine drainage bag that I hook up to when I'm in bed. After a failed attempt at going downstairs because I was so dizzy I started to reconnect to it when I noticed something. 

The bag that I had just emptied my urine from had mold.

That's right my brave, loyal readers. There is so much bacteria in my urine that it's actually creating visible mold in an otherwise sterile environment. 

I disgust myself. 

Aren't you glad you took the time to read this? I, for one, feel better after getting that off my chest! 

Alrighty. Have a nice day! I'll write again soon! 

Xoxo

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!