Wednesday, August 8, 2012

Every Nurses Favorite Subject...

Spoiler Alert: This post contains every nurses favorite subject- bodily fluids! This post also contains TMI. You've been warned...


I finally went to the urologist Monday. I was suppose to go in February 2011 for blood in my urine but then got sick with the Behcet's. I finally decided to go as I've been having more problems that are of concern to me. The blood in the urine wasn't much of a concern as there are many reasons someone could have blood in the urine- kidney stone, exercising, menstrual cycle, sex, etc... (This is not medical advice, if you have blood in your urine- consult your doctor- in fact, my whole blog is not meant for medical advice, consult your doctor. There you go sue happy people out there:))

What problems have I've been having lately? Well there's the frequency, which has gotten worse over the past couple years. I go to the bathroom at night a minimum of five times each night, but usually more. I go to the bathroom at least once every hour during the day. There has been times where I've taken a nap and had to micturate every 10 minutes for an hour or so. No joke. Yes, I drink a lot of water but you think it wouldn't be so bad. And yes, I've tried the no caffeine route and other various things without success (FYI). Then there's the unable to control my stream at times- I can sit on the toilet anywhere from 10 seconds to minutes without being able to micturate. Does this happen all the time? No, it tends to go in spurts. It's very frustrating when it happens. Even if I try to push, nothing...I think that about sums up the symptoms. Had enough of my bathroom habits yet? I sure have.

I was referred to a nurse practitioner, Jill Freeman, out of Allina Clinic Midwest Surgery. She was awesome. Very nice, listened, explained things well- everything you want in a provider. She wants to do a full workup on me. The blood in the urine isn't of much concern, it's the fact that I have had RBC's (red blood cells) in my urine before she says is the concern and given my symptoms. I had to do the lovely pee in a cup- checking a UA/UC (urine analysis/urine culture) and checking for cancer cells. All were negative this time around-yippee! After making it into the cup, which is awesome fun for us girls since we don't have a penis that we can whip out and aim right into the cup, the nurse did a bladder scan which checks for how much urine you retain after emptying your bladder. I had 175 mL's. This means I'm retaining urine. Per the nurse, you want under 150 mL's. So why am I retaining urine? Good question. This is why I'm getting a full work up.

I have two other tests coming up towards the end of the month. The first is a cystoscopy. This is done in office and apparently only takes 10 minutes. They are looking for structural problems per Jill (unless I heard wrong which is possible because the entire day I as fighting a occipital headache). The following week I will be having urodynamic testing which sounds like way too much fun after reading the brochure I was given. This is also done in office and takes about an hour, sometimes more. This test apparently tracks how I go to the bathroom-the specifics. I will be hooked up to a catheter and other various items. Fun times...I also had an ultrasound of the kidneys and bladder later that day. Thankfully those have come back normal. This is what's on my schedule for the next couple weeks, along with remicade infusions. I was to have the infusions this week but decided against it since we are going on vacation and I do not want to feel icky on vacation. Given my track record with new meds, there is no doubt in my mind I would either have a reaction and/or feel like shit for the next five days. In fact, I can't remember a time ever where this didn't happen with a BD medication.

As for my vitamin D and vitamin B level, I've learned something new. With active BD, you can have low vitamin D levels. Guess what? That would be me. It shocks me as I've been out in the sun a lot this year and have a tan, so why on earth would I have low vitamin D?! I'd like to thank Leslie for finding the article about the link between the two:) For the record, my level was at 27.4. My vitamin B12 level was on the low end of normal at 286. Dr. Achenbach wants mine over 300. She wants me to do weekly B12 injections for a month, then once a month after that. There's hope that this will take care of some of the weird neuro symptoms I've been having, like the numbness/tingling on various parts of my body. Maybe I won't be so fatigued too. Not holding my breathe on either of these though. Nothing with BD is ever that simple.

My final topic is about the spot on my leg. This spot I've had since before Christmas last year. I finally went in to get it biopsied today. I saw Dr. Pappas out of Allina Cambridge. He was nice as well. The good news is he doesn't think it's related to the BD. I can't for the life of me remember what he said it was- all those derm names are so funky anyways. I'll just have to wait for results. I think I'm finally done with this post. I feel like it's way too much info and that I've been typing forever. I'm very tired today and can't wait to read this tomorrow to see how many errors I have in it. This is the bad part of being anal about things, coming back and finding you have many errors. Anyways, good night folks!

I decided to end this post with a joke instead of a quote:

You know you are a nurse when you think it is funny to drink apple juice out of a urine cup.




Wednesday, August 1, 2012

The Five Stages...

They say there are five stages in a loss. Denial, Anger, Bargaining, Depression, and Acceptance. What's the loss am I talking about? Has something happened? Have I lost the Behcet's Disease? Don't I wish...

The loss I'm talking about is a part of me. As the disease progresses, you lose a part of yourself. Even if your symptoms stay minimal, you still lose a small portion of yourself. The worse the disease is, the bigger the loss.

They say the stages are suppose to be in order. In order to pass on to the next, you must go through the previous. I disagree. I've already accepted I have Behcet's. I've been through the denial stage and man was that a blast. Trying to pretend the Behcet's isn't there. Haven't hit the depression stage but I'm sure I'll get there at some point. The bargaining stage, well... I haven't bargained since I would pray to the porcelain god while drinking many years ago:) Is there bargaining with Behcet's anyways? You can't bargain with Bechet's because Behcet's will win every time.

Guess what? I am currently in the angry stage. I'm just plain angry about this disease. It has robbed me of my old life. I'm angry part of me is gone. I'm angry because it's highly unlikely I will get it back due to the disease itself and my horrible intolerance to the medications used to treat it. Do you know most people are on multiple medications to manage the disease? How many am I on? Nothing right now but will be starting IV remicade this next week. There is a small ray of hope still left in me I will tolerate one of the three medications left I can try.

What is losing a part of yourself like to Behcet's? It's hard to explain. Even as I try to explain, only those with Behcet's will fully understand. For everyone it is different anyways. Some of us lose a small part, while others a large part. It's almost like becoming a teenager again- trying to find out who you are and trying to find out where you fit in society. I'm still me but I'm different. I can no longer work, no longer go-go-go, no longer able to clean the house from top to bottom in one day...the list goes on and on and you don't have all day to listen to me complain, right?

This post isn't meant to make you feel bad for me, but rather help you understand that even as adults we can still lose part of ourselves, still be trying to find out who you are, and what this horrible disease takes from us.

I would like everyone to take a moment of silence for those who lost their lives in the 35W bridge collapse today in 2007. (insert moment of silence here) :) Jason and I were on our way home from picking up a washer from one of my friends when it happened. We were a couple minutes away from the bridge at the time and watched the emergency crews fly by us. The reason I post this is 1) out of respect for those who lost their lives- it should have never happened- shame on you MN-DOT and all those involved 2) a reminder that no matter how shitty life can be at times, it could always be worse.

"The greatest loss is what dies inside us while we live.”~Norman Cousins