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.