Blood is thicker than... pee...

Last week I was following up with my doctor on various things including my desperate pleas to let me start estrogen again... (no female, 30 year old body is meant to live without it and needless to say... it’s been rough.)

While I was there he asked for a routine urine sample. Just business as usual. 

Then two days later I woke up and once again my drain bag was full of blood. Not the tomato soup like last time, more like a cranberry juice cocktail. 

It's weird because the blood must be denser than urine so it all sinks to the bottom of the bag and the urine rises to the top... So it looks like some repulsive version of a tequila sunrise. 

So I called my doctor and asked what he wanted me to do... well what do ya know? He was just about to call me and tell me I am the lucky abode of a new bacteria. I didn’t even know there was any bacteria left that hadn’t taken up residence in my urinary tract. So he started me on an antibiotic that this bug is sensitive to... 

The days have were long but I finally started feeling better and was even able to go watch my son play t-ball. (It's adorable.)

So you’d imagine my shock and fury when pain tore me from a dreamy pre-sleep state that night! My stomach was so swollen, the pain started in my back and wrapped around to the front, and it truly stole my breath. 

I emptied my urostomy bag then got directly on the shower because... well that’s just what I do... I looked down and saw dark red streaks of blood streaming out of my stoma.

Awesome. 

The blood and pain came and went until finally I dragged my angry behind to the ER once again... only to find out I have kidney stones!!! 

Why? Like seriously why? This is something that my body brought on itself! I am not an oyster turning pieces of sand into majestic pearls, I am human with a freakish urinary tract. And yet. Here we are. 

They put me on some meds that are suppose to help them pass and said to expect it to get worse before it gets better then sent me home with a little strainer to try to catch the stones in. 

The blood and pain have continued to come and go but when it comes it's more severe than ever. 

Currently my urine is the color of fruit punch and the I feel the thump of the throbbing pain all over my flank and abdomen. 

At least, for once, I feel proactive during a flare of issues. My new urologist ordered a 24 urine collection test and I am thankful that things are so bad while they're testing it so they can get a true sample of the state of my urinary tract. 

It's a weird process. I pour a little bottle of preservative into a big jug and then I empty my bag into this big jug for 24 hours. Then I shake it up... wait no, first I make sure the lid is screwed on securely then I shake it up like the worlds most disgusting cocktail and then I pour just a tiny bit into a vial and mail it to the lab. Weird. I'm not 100% clear what they test there but apparently it should show us quite a bit... 

I have become obsessive about monitoring the color of my urine. My favorite urostomy bags have a nice, soft lining on top so I don't have to see the repulsive view of my stoma and urine all the time but now I want, no... I NEED to see it. So I cut the lining off so it's as clear as a ziploc and I can see straight to the putrid swill that is my urine. 

A couple days ago my urine was the color of the first drips of stagnant water from a rusty pipe. Which the doctor informed me means the blood is old and therefore the stone was probably in my ureters. It has varied a lot and I try to analyze what every shade means!

Obviously everyone knows having kidney stones is a bummer but I've been so surprised how many people have assumed that because I have a urostomy it's going to be so much easier for me... Clearly the majority of people are uninformed about the sheer horror that is having kidney stones. 

First a kidney stone is formed. 

Then it sloshes around in your kidneys and maybe that causes tinges occasionally but for the most part you live with it. In fact I think a lot of people live with stones in their kidneys for years! 

Next it decided to migrate. 

It reaches the ureters and your ureters are like whoa, whoa what are you doing here? We only process liquids... you're trying to go through the wrong exit. The stone persists that it was all a big misunderstanding but it's too late and this is the only way out. The ureters begrudgingly give up and let the stone through. 

Then it tries to move the stone along because after all it's a stone and it can't move (or speak for that matter but that's neither here not there) so the ureters contract to try to give the little intruder a boost. The contractions themselves are brutal but with a particle lodged into the tiny tube it is unbelievable. 

So then the stone is like oh man, I better just try to settle in and make this my new home. Which causes constant pressure and discomfort but at least it's not the intense, breath taking pain. 

It realizes this isn't ideal either and continues the trek to the freedom of the toilet bowl. This causes the pain to alternate between sharp, earth shatter but short lived to achey, dull and constant.

Occasionally the pain even stops all together! After one intense pain session I emptied my bag into the strainer that the hospital gave me. I was sure that I had passed the stone but all I did was catch a whole bunch of blood clots and mucus. Nasty. I felt like I was paining for gold in an old goldfish bowl. 

Then in a normal person the stone would finally get to the olympic swimming pool that is the bladder and it would slosh around in there for a while until it is forced out with the urine and there is intense but very quick pain while, and after, peeing it out. 

However. For me. My stone has a much different journey. After the ureters it goes straight into a fat piece of small intestine. I'm not sure about the pain this will cause because it's not there yet but it's troubling. Although there aren't nerves in the ileum (the piece of intestine used for the conduit) it just can't be good. Sometimes if I drink a lot of fluids the pressure of the urine spraying out of my stoma hurts so I would imagine a little stone rocketing through it wont be great. 

So what I'm saying is although I do get to miss the part where I have to pee it out but the most severe, mind blowing pain is the voyage and let me tell ya... It's brutal. 

I don't know the size of the stone but with a urostomy there is a fear of obstruction or damaging the stoma so I'm obsessively monitoring the pain and blood as well as my vitals and temperature to make sure it doesn't get worse. 

If it doesn't pass on it's own then they might have to use a laser thingy to break up the stone so I can pass it or put in a stint to give it plenty of room. 

But here's the thing. I don't have time for these shinnanigans! I need these stones out NOW! I need to feel better and have energy and not be in pain... 

Because... Something new and unusual for this blog... I have good news!!! We’re going on a trip to San Diego to celebrate my Mom's and my birthdays and Mother’s Day! My son made a paper chain countdown, I think we’re 7 days away! We’re all super excited!! 

Of course I’m also really anxious. About everything. From needing my urostomy bag patted down while going through security at the airport, to being able to walk the miles around San Diego Zoo to knowing where the best beaches and food are, to just feeling okay throughout the trip so not only I can enjoy but my Mom and Zach can too! 

I hate being such a burden and I would love for them to truly be able to be on vacation for just 5 days! 

Also I hope Titus has an amazing time and we can make some good memories that may blur all the bad ones... the other night we were talking about bikes and he said “okay, I’ll just say it. You don’t have a bike because you’re always in bed...” Ouch. The truth really does hurt. 

I am so frustrated with all these setbacks and new problems that keep popping up. I want to move on and live a life and help others instead of needing help and encouraging my family to live life to the fullest instead of dragging them down with me. 

ANYWAY! I kind of got in a little pity pit there for a sec... I'm good now. I never had a single problem with my kidneys before my bladder was removed and now it's my main battle. The infections and now the stones! It's too much!

Don't assume just because they function well and you've never had an issue that it won't be a problem after surgery... I know I say this over and over but please don't forget that you are not cured when you have your bladder removed. You are just trading one batch of symptoms for another. 

Loopagram.

People who know me are always shocked when I’m speechless, whether it’s because I’ve had a bite of something that is so delicious that words simply won’t do it justice or because I’m overwhelmed with the many ways to mock my loved ones that sputtering sounds are all that comes out... (I relate to Chandler Bing in so many ways...) 

Rarely am I left speechless from the sheer horror of a situation. 

Well today was that day. I’m home now but I haven’t even told my sweet family about what happened after they called my name at the hospital today... they’ll be finding out with all of you! 

I’ve been having flank, abdominal and stoma pain along with blood in my urine (did you know it’s called hematuria? It’s far too cheerful... it sounds like something I’d order with a side of rice and beans or with extra cherries...) on and off for over a month now. Then they saw a fleck in my kidneys on a ct scan that may have been a kidney stone so they sent me to a specialist. 

For most people a kidney stone is a painful nuisance but when you have a urostomy it can be really dangerous for many reasons. 

The doctor order another ct, this time with contrast and a loopagram. 

Even after I had scheduled the appointment for the loopagram I wasn’t 100% sure what I was in for but I knew they would be checking my ilieal conduit. They told me I needed a driver so I was prepared for a little procedure in which I’d be at least a little sedated but other than that I didn’t know what to expect. 

After I checked in and was waiting to be called back for the test I was nauseous from the nerves and began pacing in the waiting area. The news was blaring which was making my anxiety even worse so I brazenly marched to the tv and turned it off. 

Then they finally called me back and the tech asked the usual question about why I had my bladder removed and I told her I had interstitial cystitis. Her eyes got big and asked “did you try taking elmiron?” 

Oh boy. I should have just turned around then. 

(For those of you reading this because you love me not because you hate interstitial cystitis: elmiron is one of the frontline IC treatments that I obviously tried multiple times...) 

After giving me the details of her apparently large bladder and painful sex life she asked me the size of the hole. 

“What hole?” I asked.

She just kind of looked at me then gestured to my stomach. I realized she meant the size of the opening of my stoma. 

“I’m not sure. I try not to look at it.” Then she brought these MASSIVE fire hose sized tubes into the room and asked me which one would fit. Neither! Neither will fit! 

I definitely should have left then. 

Then she took me to a room with a tiny bed under a big scanner thingy. She told me to lay down and take my bag off so she could check my stoma. I asked, “what about the pee?”

She handed me a tiny towel...

So I took off my bag and she decided the smallest one would be best (ya think?). Then I laid on a bed fully clothed with my shirt lifted up and a towel catching the pee that was dripping out for quite some time until she finally came back in.

She announced that the radiologist would be right in. Then she looked at my stomach again and noticed the pathetic skin that always has various degrees of irritation from the adhesive of the ostomy bag. She mercifully decided to prep the area with betadine instead of alcohol but then she SCOURED the entire area around my stoma with a wand with a hard, orange sponge at the end then (brace yourself) she pressed it firmly right on top of my stoma. That’s right. The piece of intensities that was drafted for the usage of my urinary tract that is protruding out of my abdomen that has been hurting for weeks... she squished and scrubbed with an abrasive sponge on a stick. The sounds that came out of me can only be produced out of pure agony. Some random nurse popped up out of no where and started telling me to breathe (always so helpful) and asking me if I wanted a warm blanket or cold cloth or a pillow under my knees. 

It was all so overwhelming. 

Then the tech rubbed lidocaine over my stoma telling me that should help. 

After a few minutes I was drenched in sweat from pain and terror then the doctor walked in. He didn’t even look at me or introduce himself. He went straight to my stomach, took the catheter from the nurse and stabbed it into my stoma then told me to hold it in place and the nurse turned on the contrast drip. 

At this point I was sobbing while trying to hold the tube still. Seconds later I felt cold liquid dripping all over me. I yelled that it was leaking out and the doctor sighed before shoving the catheter in a little further. I was trying so hard to control my wracking sobs but the pain in my stoma was so extreme. He turned on the scanner machine thingy and said he couldn’t see the contrast. I had given up on trying to tell him anything but I could tell that the liquid was just pouring straight out of my stoma. 

He finally realized it on his own and yanked the catheter out of me and asked for another one and told the nurse they’d have to inflate a balloon inside the stoma to seal it off. At this point I absolutely lost it, or at least whatever I hadn’t lost already... 

Then he looked at me with annoyance and maybe a tad of disgust and said, “this should not be hurting you. What’s going on? Do you not want to do this?” 

For some dreadful reason that I can blame on the excellent manners instilled in me as a child that confuse me I started apologizing! “I’m so sorry. I’ll try to be still. I mean I...” 

He cut me off and spoke to the nurse then left the room. I didn’t know what was happening but I was trying my best to get ahold of myself. The tech started asking me about where I went to school and talking about the prices of houses in the area. I think I managed to squeak out some responses but my stoma was throbbing and I was terrified. 

The doctor stomped back in and before I knew it I was gasping for air as the pain stole my breath again. This time he pushed the catheter in further and then inflated a tiny balloon inside the stoma. The pain was so overwhelming that I didn’t even feel relief when he said the contrast was flowing where it needed to. 

Suddenly I felt a ton of pressure in the middle of my abdomen and then my left flank and then my right flank as he filled me with the liquid. It hurt so bad. There’s no creative way to say it. Tears were streaming down my face and the pain took over my body completely as I whispered expletives I’d never say under my own authority. 

I started to feel fear rising up. Were they actually suppose to be doing this? Was this right? What if they didn’t know what they were doing? What if they caused my kidneys to fail and killed me right then and there? 

Before I spiraled too far out of control mentally I heard the doctor say he thought they got it then pulled the tube out of me. A mix of contrast and urine gushed out of my stoma and all over me and my clothes but I didn’t even care. I just laid there shivering with pain and shock. 

The nurse asked me a few questions until I finally snapped out of it and took the cold wet towels she offered me. I put an ostomy bag on and took my soaked pants and sweatshirt off. She handed me a pair of scrubs she got from the back and I slowly put them on. She apologized a few times but not with any real care or concern etched in her voice... 

As she walked me out she said the doctor thought the results were good, the test showed that there was nothing obstructing the kidneys and I should check to see if I have a UTI. (Because I definitely would have put myself through that torture BEFORE testing my urine for s Uti...) I walked out to my husband and after almost 10 years of marriage he knew by my face that it didn’t go well. I told him I couldn’t talk about it yet. He got the truck then picked me up and drove us home on the icy roads.

I got home and collapsed into bed and started sobbing again. My stoma and back were still hurting so bad that I dug for my old bottle of morphine and took a half. 

After the pain eased up I took a shower to wash the pee off of me. I ate some dinner and now I’m just laying in bed exhausted and drugged but also super scared that the pain will return after the meds wear off... 

I don’t know how much weight I should put in that dips opinion but my appointment with the specialist is next week and hopefully we’ll find out more then... 

(In a half hearted attempt to edit this blog I just read it over and I’m so frustrated and annoyed that it doesn’t even kind of capture how horrible this test was. So read this knowing that there is a certain levels of pain and horror that words fail to truly portray. So multiply however horrible you think it was by 6 and you might get close...I’m not great at writing these types of blogs but I think they’re important.) 

Scarred and scared

I remember a boy in 4th grade telling me he knew how to spell dessert verses desert because you want more dessert so there's more S's. 

That has nothing to do with this blog except my clever title reminded me of it. 

Moving on. 

I’m sitting in the bath praying that this hot water will have the magical healing powers that it used to possess for me.

As much as I try to avoid it I can’t help but glance at the body that’s bobbing under the water. (Wait. That sounded horrifying. There’s not a decaying body in the bath with me... I meant my own body...) I saw a scar I haven’t noticed for a while... I examined it until I finally realized it's from the JP drain I had after my urostomy. (It’s a clear bulb that fills with excess blood after surgery and is emptied with a devastating sound that surely kills fireflies or something dramatically terrible.) 

Then I started laughing out loud. (The echoey confines of the bathroom made the laugh sound menacing. What a freak.) It’s hilarious! I’m so scarred that I can’t even remember what gruesome scar is from what! 

My body is covered in stretch marks from a pregnancy and weight fluctuations, freckles from the sun, dozens of surgerical scars in various sizes and shades of pink, a bright red pulsing stoma, a urostomy bag half full of pee hanging off my abdomen, and a PICC line with extension tubing dangling from my upper arm. Plus all the blubber and blemishes most 30 year old women would complain about. 

My body is floppy and flabby, marred and mired, scarred and scoured...

It's... not great. 

If it was a car it would be one with multiple parts held on by soggy duct tape with a mismatched hood and a black trash bag window. 

Rough. 

But it's nothing compared to the inside. 

After 17 years of chronic and acute illness and sickness I think my  interior would resemble that of my brother-in-law's old project car that had a milk crate as a drivers seat... 

I’m starting to realize even when I start feeling better this rattletrap isn't going to start up on the first try and happily glide up a mountain. 

No sir. 

First I have to take it off the concrete bricks holding it up then listen to the hopeless clicking before a sputter and spit brings a promise of forward motion. 

It will take time to just clear the moss off the windshield.

This metaphor is getting away from me.

The point is. I've progressed leaps and bounds but I can't possibly expect to be in tip top working order... 

I've had a hard time trying to understand what is my new normal... Am I still chronically sick with bouts of feeling well or am I actually a healthy person with frequent spells of unjustified misery? 

What I'm asking... is a zebra black with white stripes or white with black stripes? 

I guess it doesn't matter but it's so hard for me to know what to say when people rave and celebrate my "good health". I let them applaud my progress because if I think about where I've been over the last few years, I really have made progress! 

So here's what I, and probably lots of others who struggle with chronic pain and illness, want you to know... we have good days and bad days, we have good weeks and bad weeks, maybe even good months and bad months but don't mistake a burst of energy and feeling better for a conclusion to our sickness. 

In fact, the bad times that follow the good... no matter the length of time.. are so much harder for us because we caught a glimpse of "normal" but then it went away. So then when we are back in bed for hours or days we know what we are missing. 

Right now I’m in a horrible cycle that brings fevers then blood in my urine then pain in my kidneys, abdomen and stoma. I’m exhausted and nauseous. I'm discouraged and desperate. I'm also terrified.

Something is wrong. 

I had a CT the other day and in a couple days I’m a having a loopagram... which unfortunately is not an exhilarating roller coaster with free graham crackers like the name makes me wish... honestly I’d wish for it to be almost anything other than what it really is... they will put a catheter in my stoma then inject dye into my Frankenstein urinary tract then scan me. 

They told me I need to have a driver so I’m hoping that means they’re going to drug me... 

If they can't figure out what's going after these tests then they might need to send a scope into the stoma and look at the conduit from the inside. They're going to need to need an elephant tranquilizer for that one. 

I've been forced to become a lot more brave and tough than I ever wanted to be but I still can barely look at my stoma and I've never intentionally touched it and now with all this crazy business it's so sore! Not to mention all the blasted work we did to make and then maintain a functioning urinary draining system... Now they want to... penetrate it. Not to sound like a total millennial but I truly CAN'T EVEN. 

Pray for me. Over and out. 

(I'm having a really hard time figuring out the tone and overall theme of my blog as a whole... I haven't been posting because I didn't think it made sense but I am at the point where I need to write and I figured I might as well post my ramblings... Hopefully one day I will figure it out and it will be a well constructed, reliable, relatable blog but... Don't hold your pee. (Get it? Like don't hold your breath but I said pee. HAHAHAHA!) 

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.