The Woes of Waiting...

It's been a while since the last post but for good reason. With winter approaching and the weather changing, it's been wreaking havoc on my body. I've been busy with doctor appointments as well and dealing with a flare up of symptoms. So where to start, where to start...

I started pool therapy last week. My body feels good when I'm in the water. Hot tubs relieve my joint pain. The therapist, Kim, is really nice. I'm her first Behcet's patient. Imagine that :) I told her I'd probably be her first and last since this is not something we typically do and given how rare the disease is. Anyways, we started slow, with things like walking back and forth and moving the legs. I could feel it the moment I got out. I came home and slept for 4 hours. The following 3 days were hell, if not longer. I'm going to give it one more shot but if it results as it did the first time, I will have to say no as I cannot tolerate being any more exhausted and feeling like crap than I already am.

I keep meaning to post about my toes. I've had a very odd thing happen at the end of August. I was out walking at the zoo for a prolonged time, which is not something that happens ever. In fact, I can only recall one other time where I was walking for so long and that resulted in vaginal bleeding. So what happened this time? Once I got home I realized how painful my toenails felt. My feet and toenails were throbbing, they actually felt bruised! What resulted in the following week was my big toenails turned black and blue. With the right side being the worse. The right side actually had crusted blood under it. And still does. The best that I've come up with after talking with other BD'ers is that this resulted from the trauma of walking and swelling. I can't even blame it on my shoes as they are not new and not old. Wish this was the case. So pictures are below.

I'm still waiting to hear on the rx assistance program for the Kineret. I'm also waiting to hear from MN Care on whether or not I qualify. I'm hoping it will be today. Or at least this week since November 1st would be the first day qualifying.

Something else I need to bring up that truly saddens me. There are some really sick people out there. I've recently learned there are people out there who fake diseases like this to get disability. They actually fake to join the groups. There was a person who did this in a very private BD group. I unfortunately cannot give much details other than this person was clearly faking. Between a picture and her story, anyone who bought it is a moron. Sorry, but when things don't add up you should question what's going on. I really wish I could have shared the pic but I cannot. It scares me that people are sick enough to do this. If only they knew what this disease was really like, they wouldn't being trying to fake it. I'll leave it at I hope this person gets the mental health they so clearly need.

So with this all being said, I will try to end it with a funny quote. I hope everyone is having a good day and check out the toe pics below :)

"Toe: A part of the foot used to find furniture in the dark”` Unknown -wish this was the case in my situation, sort of :)

The pic of the toe that is entirely bruised is the right one. I've done the best I can getting a photo of the blood crusted underneath the toe.

No insurance, No medications...unless you're a millionaire

I recently put a photo of myself on Facebook directed toward Mitt Romney as I fall into his 47% who need help from the government. Anyways, this post is not to tell you who to vote for as I would like to keep politics off my blog as much as possible, but I think this is important to talk about healthcare as a basic human right. I'm sure everyone is sick of politics by now anyways, right? I would like you to read my post and keep in mind what you would do if you fall into my situation.

What's my situation? I quit working at the end of March due to my Behcet's symptoms worsening. I lost my health insurance in July. I don't qualify for MN Care until November 1st. I say qualify but it's more like I can't even apply to get it until November 1st as you need to be without insurance for a minimum of 4 months. There's no guarantee I will get it since I get a small amount of money from long term disability through my work which is something I paid for when I was first hired with Allina. I have Allina Partners Care right now, which is not health insurance but it allows me to see doctors at the Allina Clinics and not be billed for the office visit. This will expire November 30th. So why am I complaining right? I have no prescription insurance, so I have to pay out of pocket for medications. I currently have 4 medications I am waiting for approval (through Allina prescription assistance program), which a fairly long process as my worker through Allina needs to send it to my doctor, to me, and then contact each drug company that manufactures the medication. Then of course it needs to be approved through them and sent to me. So I am waiting for the approval of a medication that may help me get better. What are the chances I will go into remission on my own? Extremely rare. I have never heard of it without meds. I've heard some people have a relief of their symptoms while pregnant but it returns after the pregnancy. So how am I suppose to get better without these meds? Do you have any idea how expensive it is for medications without insurance? I ask that next time you get your medications filled ask the pharmacy how much it costs for your medications without insurance. They will be more than happy to give you a quote. Now keep in mind if you had my disease, you are looking at around $2,000 for most medications used to treat the disease. Or I should say a main medication to treat it- the injectables specifically. So add that to your bill. Keep in mind most people with Behcet's are on multiple meds to manage the disease- usually an oral or two along with an injectable or IV med but each situation is different with Behcet's.

Now I challenge you to prioritize what medications you can pay for out of pocket- what do you need to most to get through the day- is it blood pressure pills, pain pills, heart medications, birth control?- while still managing to pay your rent and what other bills you have. You have to decide whether or not food and rent is more important than your medications. Think I'm joking? This is a real situation for many people. But we don't need the government giving us help or allowing insurance for everyone right? For those of you who think healthcare isn't a "right" for everyone, I honestly hope you are placed in my situation or something similar. Your mind will be changed very quickly once you have to decide medication, food, clothes for your children, etc.

Think about those who have no long term disability or their clinics don't offer something like Allina Partners Care. What if it was your grandmother, grandfather, mom, dad, or child who was in this position? Would you still think the way you do?

Alright, enough about health care. I saw my neurologist yesterday. She is the best! She was shocked at the amount of shit I've been dealing with since I last saw her. She agreed I did the right thing starting the butterbur and not doing the botox. Her words were something along the lines of "I agree with the botox decision. When you think about it how many people with Behcet's do you think have had botox and we have no idea how you'd react to it. How many studies have they done on it? Plus I've heard it's painful." She didn't scold me for not starting the gluten free diet, in fact she says I have enough on my plate so let's wait until I can handle it. She wants me to see a TMJ specialist to see if that's why my temporal headaches are so bad. Problem with that is I have no dental insurance and cannot go outside of Allina for medical without paying out of pocket. There's something else to think about: what would you do with no dental? It's already ridiculous enough for dental work but what if you need something like a root canal or crown? Any idea how much it cost? I can tell you because I've had to deal with it. Let's start with a quote I got for a basic filling to get done- I had a filling fall out a week ago and was quote $185 to replace it. Root canals are around $400-600. Crowns are around $900-1000. So add that to your bills too.

UPDATE: I just found out from a fellow BD'er how much remicade costs a month. Go on, take a guess. It's every 2 weeks IV medication. Drum roll please... $16,000! By the way, those of you who think that if you have insurance or rx assistance card you should be able to afford your meds- not everyone. Why? Because not all are generic, not all insurance cover meds completely, not all rx assistance lowers them enough to be affordable- especially when you have a family to take care of and there is only one income coming in. So please before you say hateful comments or assume things, wake up and realize we are NOT in a perfect world.

A random thing I've been thinking about lately is how long I've truly been sick. Looking back some of my symptoms started way back in 2008, possibly even 2007. But I'll talk about that in another post:)


I want you to take a look at my medication list. These are the medications I am on or should be on currently to help manage my disease, aside from the birth control (which is $22 for each pack which lasts me 3 weeks). All of these I need to either manage BD itself or the complications I get from it.
percocet (pain)
sanctura (urinary)
kineret (Main med for BD)
ginger root (nausea)
butterbur (Migraines)
piroxicam (pain)
lyrica (pain)
flexeril (muscle relaxer)
hydroxyzine (nausea)
fish oil (for BD- this is good for any inflammatory disease)
omeprazole (I get heartburn from some medications)
diflucan (for chronic yeast infections- topical and vaginal due to the BD)
vitamin D 2,000 IU daily (mine is low due to active BD)
vitamin B injections monthly (mine is on the lower end of normal, unsure if it's from BD or not)
magic mouth wash (for mouth sores/inflammation)
albuterol inhaler (for when I get sick with an URI or when I'm around cigarette smoke, same with the nebs)
albuterol nebs
nystatin powder (for topical yeast infections due to BD)
compazine (nausea)
loestrin (BCP)
triamcinolone cream (for mouth/vaginal ulcers)
stool softners (due to narcs)
claritin (for allergies, not BD but it's another cost)



You know what's scary? My allergy list is almost as big as my medication list. I am now officially at 17 allergies/intolerance's. Wow, huh?! Anyways, I hope you take this to mind when you think about whether healthcare is a basic human right. Why? Because it may be you some day in this position.


"So long as we have enough people in this country willing to fight for their rights, we'll be called a democracy." ~Roger Nash Baldwin

Geographic what?!

One of my favorite sayings is "Some times you just gotta say what the fuck." I actually had a bumper sticker that said this a couple years back. Can you imagine a nurse driving around with this on her car? Along with a "sterile stupid people" bumper sticker? I made sure NOT to park in the employee parking lot to avoid me getting in trouble:) Anyways, I bring this up because of the my title and what it's in reference to. I've recently learned I have a geographic tongue. What the hell is that right? Exactly what I said. It's when your tongue gets a pretty pattern of white spots, red areas, among other things. It pretty much looks like a map. To be more specific, it's inflammation of the tongue. I've been told it is related to Behcet's, it's not related to Behcet's, it's an autoimmune deal all of it's own but can coincide with Behcet's. All I know is I have it. I've had it for at least 6 months now but didn't realize what it was. Thought I just had a pretty tongue:) I've inserted a pic below of what it looks like when it first starts- it gets much worse. I'm trying to be more vigilant of taking pics but often forget.

In other news, I am waiting for my medications to be covered through the Allina Prescription Assistance program. I cannot say often enough how difficult it is to afford medications without insurance. How am I suppose to get better when I cannot afford the medications? How many people have to go through this monthly? Fucking ridiculous. Yep, the mouth is going today, beware.


What else am I dealing with? Well I had my first fall a couple weeks ago. I went down in the bathroom from fatigue/weakness. Thankfully I wasn't hurt. It'll take more than that to get rid of me folks:) I bring this up so you understand how fatigued and weak you get with this disease at times. I went to an initial physical therapy appointment so I may begin pool therapy. Hopefully this will be good for me. My one concern is it will make me worse off since that is what activity does but there's hope, right? I told the lady I need to take it very slow. I start it in 2 weeks. Also dealing with the usual pain and trying to find the right medication, which I am beginning to think it will never happen. It's very frustrating because I know I will never be completely pain free but if I can be semi-functional, that would be awesome. So I'm off the Oxycontin (evil shit right there) and trying Percocet. For a long time I was OK on Vicodin and Tramadol but then I had to stop the Tramadol and since then I haven't been the same:( This drop in temp isn't helping either right now. We've had 70 degrees to 40 degrees every other day for a couple days which was pure hell on my joints. Now we are at about 35-40 degrees with massive wind gusts. And the "S" word happened today. Snow. Didn't stick on the ground, but put a damper on my pretending winter isn't coming. I go into denial every year.

Anyways, this where I'm at. Waiting, stuck in a corner, etc. One thing I should mention is the butterbur has decreased my headaches, not eliminated them but decreased them. Either that or I'm in a freak time where I have hardly any, which is quite possible as it has happened before. Guess I'm hoping it really is the butterbur. I opted not to do the Botox for headaches since the Butterbur is helping and I'm am concerned that I will have a reaction to it since I have frickin' reactions to EVERYTHING. Think I'm joking? I'm on like number 15 for amount of drug allergies I have, maybe even 16 now. I gave up counting. Also the Oxybutynin did not help me, in fact it made me worse, so trying another new medication called Sanctura.  If that doesn't help, then it's off to see a doctor at Metro Urology for more testing, options, etc. Good times, good times...


The other pics below are of me torturing the dog, Coconut, with a witch hat:) I tried for the cats but they weren't having it. And we have Jason and Jacob's nephew over this weekend, so this is Ryder and Jacob hamming it up for me.

No quote or saying down here today because I put one up above:)