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.

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

My New Neurologist...

This one's gonna be a short entry.

Yesterday I made a visit to a new neurologist. Or new to me- Dr. Achenbach from Allina Cambridge. I was actually going to see her initially but then went to Noran instead since they were listed on the ABDA website.

I'm very happy with my visit yesterday. She actually knows about Behcet's. Really?! Yes, a doctor who knows about Behcet's! Why does she? Because she did a year of internal medicine before neurology and dealt with Behcet's patients at the hospital many times. So good news for me!

She wants me to go off the tramadol as it is known to cause seizures for people who have no risk/reason for developing them. She worded it much better than me of course:) FYI: If you have any neurological problems you should not be on tramadol or wellbutrin since they can cause seizures. There's your medical lesson for the day. She would like me to try butterbur for headaches once I know what's going on with my IV remicade. I am waiting to hear if Allina Partners Care covers in clinic IV remicade since I am without insurance. By the way, how are people suppose to get better without insurance? I'm stuck in a 4 month loop without insurance. Awesome times. Thankfully Allina has a thing called Allina Partners Care which you can see Allina providers and get your visits covered for free. I can't imagine what my bills would be like without this! Fucking ridiculous is what.

Butterbur is suppose to cut headaches by 50%, which would be frickin' awesome! I've been dealing with temporal and occipital headaches for as long as I can remember now. A side note: another medication I can cross off my list for not working is the Zonegran. She said she wouldn't try me on a prescription medication because my Behcet's isn't under control. What I wouldn't give to get the Behcet's under control... I don't even know what under control means anymore. The last time I felt normal was July 2011 when I was on the prednisone. Damn allergies...or damn my body for not tolerating medications... If I don't get on the remicade, then I will try the butterbur. If I get on the remicade then I will hold off on the butterbur.

She also wants me to try a gluten free diet to see if it helps with my inflammation. So I am now going to learn about that. Wish me luck! I know I'm gonna need it. I also need to keep a headache journal. We also rechecked vitamin D and vitamin B level since it's been a year. I think that about sums it up. Hopefully I recalled everything right. And I know this post is all over the place but too bad. Not feeling well enough to make it perfect.

Hope everyone has a wonderful weekend!

"Life is about increasing understanding by expanding our ability to experience new things. New realities, points of view other than the ones familiar to us."~Ken Dyers

As I was typing this up, I heard back from my rheumy's office. I am scheduled for my first Remicade infusion on August 7th, woot woot!

My Ode To Behcet's...

My Ode to Behcet's
Oh Behcet's,
What would I do without you?
I'll tell you what:
Not have to deal with allergies to every medication,
Sleep a good nights sleep,
Not feel like I'm 300 years old,
Enjoy the warm weather instead of dreading it,
Enjoy gardening, walks, even working and cleaning the house!
Live life again...
What do I think of you?
Screw you Behcet's!
My Ode to Behcet's...

(Trust me I could go on for hours of what I'd do without it)

I decided to write this after yet another reaction to a new medication. Last night I finally tried Enbrel. Why did I wait so long to try it you ask? Simple. I haven't been feeling well. I try to wait until I'm feeling somewhat decent before starting a new medication in case I end up having to go the ER. Been there, done that and it's not fun.

So what happened with Enbrel right?
First you need to know Enbrel is an injection. The preferred site is your leg according to the info they sent me. And I've gotten way to much shit from the manufacturer of Enbrel. Way too much. I held the pen and Jason hit the button for me for it to inject. I made it less than 5 seconds. Probably more like 2 seconds. It was a burning pain nothing like I've felt before. The rest of the night I had a burning pain in my leg and nausea that woke me up every 30 minutes. This continued throughout the night, so sleep there was not. I woke up this morning and there is a scab where the injection was given. Needless to say I will be watching the area closely and I can add another medication to my growing list of allergies.

On a completely different note I am very upset about a letter my Behcet's friend received from the doctor. I'm upset for many reasons for this one and cannot say all I want to because I need to keep my friend anonymous. I feel it's important you read this and understand what we go through as someone with chronic pain. I've known druggies before and the person who received this letter is NOT a druggie. Here's the letter.

Dear ***,

I'm sorry to hear that *** had another bad episode of pain. I think we did have a protocol of sorts, it just isn't always sufficient to completely eliminate her/his pain- we talked about using ibuprofen vs. naproxen, and the other measures, but it just isn't enough sometimes. The difficulty is that we really can't do narcotics either- they may distract him/her from the pain since they can give her/him a kind of "high", but it's not appropriate therapy, and it will ultimately lead to him/her becoming dependant on them. In fact, I wonder if she/he is already dependant on them and that's part of the reason why his/her pain keeps coming back. If we wanted to further look at this possibility we could perhaps consider having her/him see an addiction specialist for an evaluation, to help us decide if some amount of narcotic dependence could be playing a role in his/her pain.
Another thought about this particular episode, since she/he has the blurry vision and the nausea is that it seems an awful lot like a migraine and we could try a triptan, such as sumatriptan. I know he's/she's tried it in the past without success, but as long as she's/he's not had a serious side effect from it, it might not hurt to try it again. I will go ahead and order some to the WM pharmacy if you decide you would like to pick it up and give it a try (it's a nasal spray- can use it twice in 24 hours, and should not use it for more than 4 days in a 30 day period).
Another thing we could consider adding to the protocol would be a therapist visit. Perhaps at times like this when she/he gets really bad, myself or Dr. Monroe could try to contact behavioral health about getting him/her seen that day by the behavioral health department so he/she could talk with a therapist about CBT pain management techniques and they can help her/him overcome her/his acute crisis (I mean- in addition to the regular CBT treatments we are setting up, I'm wondering if maybe we can use them as a resource to help with these acute attacks).
I'm sorry everything has been so frustrating, hopefully some of these ideas might help us out. Cheers-

Dr. Roberts

First, I'd like to let you know Dr. Roberts that not everyone gets a "high" as you call it from medications. Second, narcotics, if used as prescribed, the addiction risk is low. Why do I know this? Because I've discussed this with my doctor friends. Third, I hope that you require narcotics some day and they do not give them to you. Maybe you'll be blessed with this disease and can figure out how to manage without pain pills. Fourth, this doctor should be forced to go back to med school and be taught a compassion/caring class. And last, "cheers"? Really? There's nothing cheerful about this letter and maybe you are thinking drinking? Maybe your secret addiction? Perhaps...(think I'm being mean? Too bad, get off my blog)

Yes, this note upsets me because when I my adhesion come back in 2007 I went to MAPS pain clinic in Coon Rapids by my own choice and was treated like a drug addict because I used 30 vicodin every 2 months for my pelvic adhesion pain. (I will go more into it at a later date) So I do understand what it's like to be on the side of needing medications. I also understand the side of dealing with drug seekers- I saw it all too often at the clinics when I was working. I've also worked with doctors who refuse to give narcotics to anyone. I've also worked with doctors who will only give older people narcotics and frown upon the younger people who need it. So what's the solution? Good question. A magic button health care professionals can push that relieves all pain for patients so we don't need medications. Sounds good to me.


So what's my excuse for the monthly posting? It's summer and I've been on my anti-Internet kick. So there:)


"Never forget why you went into the medical profession because some day you may need someone to help take care of you." (Let's hope they went into the field to help others and not for the money, right?) ~Chrissy

One more med to cross of the list...

As usual my body has decided to reject the new medication to treat my Behcet's. Cross Humira off the list. I'll make this as least sharing as possible for those of you who don't do well hearing about female problems...

I started the Humira on a Wednesday night. I couldn't push the button to give myself the injection. No matter how hard I tried I just couldn't do it. I knew what was coming. Yes, I can get a shot no problem, but injecting yourself is another matter. Thankfully Jacob, my 12 year old brother-in-law, had no problem hitting the button for me. In fact he was happy to do it. Not sure if it's because he got to give a shot or to get back at me for making him get shots at the doctor...

The good news is I didn't end up in the ER-yay! The bad news is it gave me my menstrual cycle. Here's the TMI- you'll get over it. I suppress my cycle due to my endometriosis and pelvic adhesion. They cause major pain when I have my cycle. Imagine laying in bed for 5 days straight when you get your cycle because it feels like someone is repeatedly punching you in the stomach. I'll stop there. At first I didn't think anything of it. Thought it was some fluke. Then it happened again the following week. Not normal. So we figured it was the Humira. There's a 1%-5% chance of patient's on Humira getting menstrual irregularity I'm told.

Next on my list is Enbrel. The prior authorization was approved. By the way, what a joke prior auths are. Those will be a different nights topic:) I called to activate my Enbrel card today so I can get it for either free or very cheap. Next was the call to the pharmacy with my Enbrel card number. For some reason the pharmacy is having problems running my card. Not sure if it's because they don't do it enough (as one pharmacist admitted via phone) or if there is something wrong with my activation, but I doubt that as I spoke with Enbrel twice to confirm the activation was working. Hopefully the pharmacy will call tomorrow with good news. A site note about Enbrel or the makers of it is they send out a sharps container for your needles once they are used. Do you know how great that is? Humira didn't do that. The drug companies make way too much money, every company should be required to do this by law.

Brief update on the lawyer. I chose Hoglund Law. She was very nice and well informed. They took on my case. I left actually feeling good. I didn't have to defend myself like most of us with Behcet's do over and over again. I did a brief update via phone today with another associate of theirs. I am now waiting for the next decision from disability which can take 3-5 months. Drawing a blank to the specific name of it at the moment.

On a side note, I managed to drop a heavy object on my foot Tuesday. More like the object fell off a shelf due to me moving something close by. Went to the doctor today to get an x-ray due to worsening symptoms. There might be one or two areas that could be fractured but it's hard to tell due to where the injury is. Waiting for the official read from the radiologist. Prob not fractured but better to be safe then sorry. Plus I got a stylish black surgical shoe from the doctor's office. You are so jealous aren't you? So that's where I'm at all around. Pain, swelling, and all that good stuff is the same. Headaches have been worse this week. Blah, blah, blah, right?

Good night everyone! I'm off to have my usual crazy dreams from the night sweats...

Good times, Good times...



“The good times of today, are the sad thoughts of tomorrow.” Bob Marley

The Walking Dead? No, it's just Behcet's...

Last week I was told by my mother-in-law I look like a zombie. This was due to me walking and looking like one. It was a night of the usual severe pain and fatigue, where every move kills your body.

I, of course, laughed at this because of how much I hate zombies (traumatized as child at the babysitters from watching Night Of The Living Dead- yet this doesn't keep me from watching The Walking Dead). And yes, walking like this happens often.

This weekend I thought I'd give golf a try again. After the first hole I threw in the flag. I could feel it in my wrists and elbows. I decided to not have a repeat of last time. The feeling of how I felt afterwards was too fresh in my mind. When will I golf again? I'm guessing next year when the thoughts of how I feel afterward are long forgotten.

I also received my denial of disability this past week. Surprise surprise...I know it's going to be a long fight, especially after hearing stories from other BD'ers. I find the letter rather amusing. It pretty much states my condition is not severe enough to keep me from working. What I wouldn't give for the people who decided this to be hit with this disease. I wish they were forced to spend a week with me or in my body so they may understand. I have a meeting with a disability lawyer next week. I'll be spending my good time (time where I can semi-function) gathering info from websites and my own records I've kept to give to the lawyers.

I came across something rather interesting a couple days ago:

If all of a persons arteries, veins, and capillaries in the body were stretched end to end, they would reach across the United States, not once, but 20,000 times!

Wow huh? Now imagine how messed up my body is from all these vessels because that is what my disease affects...

How's today for me? Well, I'm in a flare up. Day 2 to be exact. Can't walk without holding onto something. My body from the hips down is heavy, throbbing, and feels bruised. Pain is 9-10/10 even with pain pills. Go to the ER you say? No thanks. They don't know what to do with me except dope me up on IV pain meds.

When I see my rheumy next week I think I'm going to break down and ask for a walker or cane. I'm having more days lately where I need support to walk.


"Your pain is the breaking of the shell that encloses your understanding."- Khalil Gibran

The Quest For A Normal Life...

The quest for a normal life...not something most people would give a second thought to. For me, I get a bug up my ass every so often to try to do something normal, to live a normal life...the life I use to have before this horrible disease took it away from me.

Last weekend it was golf. I haven't been golfing since I got sick- mainly because I can't walk the course and our golf cart wasn't working. Now the golf cart is working so Jason and I went golfing. It's a 9 course hole at our trailer. I could feel the pain after I was done with the first hole. I knew it was going to be hell the next day but the need to feel normal overwhelmed me. I was willing to suffer in order to do something normal. I know I am not alone in this. My Behcet's friends understand the need for this.

And yes, it was fun!

My wrists and elbows took it the worst. The three days following golfing felt like my wrists and elbows had been broken and put back together. Bruised on the inside and out. Even with pain meds it was terrible.

You'd think this would be enough to stop me from doing it again but it's not. Why? The answer is pretty simple. I long for these times. The days of doing normal things. Even if it's one normal thing a week. Even once a month. Either way, I'll take it. It's these normal things that stop me from going insane from sitting around day after day.

I know my life will never be normal again or there's a very slim chance of it. But then again, what is normal? Is there really such thing as normal? So I will say, I will try to have moments of what is normal to me even with this disease.

"It is almost impossible to remember how tragic a place this world is when one is playing golf. " ~Robert Lynd