Neurology, Neurology, Neurology, what would I do without you?

I went to a new neurologist today, Dr. Susan Evans at Noran Clinic in Minneapolis. I liked her a lot. She listened and seemed to actually care, which is key to finding in a doctor regardless of what illness you're being treated for. We are going to start Topamax, which will be a daily medication. I'm to follow up in 6 weeks. I'm hoping this will kill these damn migraines/headaches.

Since 2/21/12 I haven't had a day without a headache/migraine (whatever you want to call them, which I'm thinking a really nasty name right now). It was so severe Saturday evening I almost went back to the ER because the numbness/tingling started again in the left side of my face. Dr. Evans said that due to my Behcet's disease I am at risk for developing multiple headache disorders, or something along those lines. I was a bit out of it due to headaches and feeling like poo poo due to a flare up. And yes, I had a ride to my appointment today for all those wondering how I got down there if I was this bad off and I'm sure there are some of you out there.

At my visit, I had a hard time walking a straight line with my feet back to back due to severe knee pain and weakness. I'd describe it like your knees being hit by a baseball bat about 20 times. Almost impossible to walk. I was shuffeling today like the old ladies would do. No offense to old ladies;) I also had to tell her about my concentration and memory problems, which was very difficult, which I will get into at another time. I'm am still having a hard time talking about this.

I will see a nurse practioner next time because apparently they want you to switch from doctors to NP's every other appointment, which is more than ok to me. During check out I was told this and I said to the receptionist I need to see someone who specializes in Behcet's. Her reply "What?" Behcet's, I then spelled it for her. She said "I thought you were being seen for migraines". I said yes, but they are due to Behcet's. What I wouldn't give for them to be from something else. Wishful thinking, right? She then had to go and ask the providers there who deals with this disease. She came back with a shocking look on her face saying "Dr. Todd says it's a very rare disease and he's only had one patient with it. There is a nurse practitioner who has heard of it but doesn't know about it but is willing to learn." I said I would be more than happy to see her then. When you have Behcet's, you quickly learn that you know more than most doctors and nurses do about it. Don't believe me? Get it and see what happens:) The other thing you quickly learn is you need to be willing to see someone that is willing to learn and work with you because there is so much about this disease we do not know. Treatment varies widely from person to person.

I left the clinic with a wonderful feeling that someday I just might be able to get rid of these horrible headaches.

On a different note, I have seen Dr. Truitt at Allina Cambridge before and I do think she is a wonderful provider but she doesn't specialize is Behcet's. I just want to make note of that for those of you wondering why I'm seeing a second neurologist. Wait until I post my stories about my first two rheumatologists. You're in for a shock. (Nothing like a cliffhanger to end the day)

The Magical Grab Bag of Behcet's

At first I didn’t understand how the people with Behcet’s could think about it daily. Why let it control you? They are constantly thinking about their symptoms and how it controls their lives. After almost a year of being sick I finally get it.

My symptoms have worsened and it’s all I think about. Why? It’s actually pretty simple: I can’t go somewhere without thinking how it’s going to affect me. I don’t know if I will make it though my sister’s baby shower or a family Christmas get-together, or if I can even make it there in the first place. It consumes you. Even if you don’t want it to. You can fight it but it will only make you worse off in the long run.

You see, at first I was stubborn and thought I can still do everything I use to but in moderation. It’s not that easy. You never know how you are going to feel on any given day, even if you start out feeling good, you can go downhill quickly. It’s like the weather, sunny one moment and stormy the next.

Then comes the denial. The time when you try to act normal even if you don’t feel good hoping to outsmart it. What a crushing blow this was. Even putting on a happy face doesn’t matter because it’s always there. Every corner I turn, it’s rearing its ugly head waiting for me. Waiting to either pounce a new symptom on me or worsen an existing symptom. I try to ignore the fact I can’t make plans because I never know how I’m going to feel but reality sets in after a while and you just feel hopeless.

What I wouldn’t give to feel normal again, to be able to do things, to look towards the future.  See it’s just not that simple with Behcet’s. But that’s because it’s a complex, unknown disease.  And that’s how you have to treat your life- every day is unknown. Your life becomes a complex problem that you try to solve but no matter how hard you try, you will fail. This is because you don’t know if the medications you’re taking are going to keep working, or if you’re going to need to add a new one, or if they will even work in the first place. With Behcet’s, you have to take it one day at a time. Sure you can dream about the future. It doesn’t stop me of one day hoping for a cure. Or having a remission of symptoms.  I’d take either one.

I’ve read the spoon theory before and think it’s a great theory and a good start but it doesn’t quite describe what living with Behcet’s is like, but it was also meant to describe lupus. It got me thinking how do you describe it to someone? Is it even possible? This is how my theory evolved.

Living with Behcet’s is like reaching into a grab bag every day and pulling out a handful of symptoms.  But it’s not just a regular grab bag; it’s a magical grab bag. It’s a magical grab bag because some days you may only have a couple symptoms and other days you have too many to count. Then the day comes when you pull out the magical piece of paper that has a new symptom on it.

The funny thing about this disease, and I’m being sarcastic, is even when you think you have a hold of the disease your symptoms can change. They can change at any given day or time. Even if you pull out a magical piece of paper saying you will have three symptoms on a day, like fatigue, joint pain, and mouth ulcers, you could start to develop others as the day goes on. You may have pulled out a piece of paper from that grab bag that says “I’ve decided to give you pain like a semi-truck has hit you at noon” or “I’ve decided to give you a headache around 2 PM and a genital ulcer at 5PM”. You never know when another symptom is going to pop up. This is why I call it the magical grab bag. The other thing about this grab bag is it isn’t coated with a magical fairy dust that makes your symptoms go away.

The worst part about this disease is you may start feeling good, having a day of minimal symptoms, which is very rare but not unheard of. I’ve learned to never take this for granted and go overboard with doing normal things because at any given moment that feeling good will end and I’ll be knocked right back on my butt but usually fifty times worse than I was feeling before. I like to call this the tornado effect. It’s the calm before the storm.  It wreaks havoc on your body once it hits. Usually when it’s this bad, there’s not a damn thing you can do about it.  No amount of pain medication or changing positions will help. This is the point where most of us cry. Sometimes the cries are from frustration from the medications not working, other times it’s from the pain itself, and other times it’s from knowing there’s nothing you can do but wait it out.

Even though you are reading this, you will never fully understand what living with Behcet’s is like. Something as simple as cleaning the toilet is a blessing most days. If I can do that, I feel a sense of accomplishment. Then there are the days if I can make it to the bathroom without crawling, that’s a blessing. Every day is just one magical bag of symptoms, you never know what you’re going to get for the day.

Living with Behcet's

Hi,
My name is Chrissy. I'm 32 years old (as of this post) and am living with Behcet's. I'm about a year into my illness and decided I didn't have enough problems in life, so why not try to create a blog? So this is my attempt at sharing what living with Behcet's is like. Hope this sheds some light on living with this horrible disease.
Chrissy

If you have questions about this disease or want me to write about something I haven't, feel free to shoot me an email.