The First Time Getting Really Sick...Little Did I Know What Was Coming...

This post is about the first time I was really sick, little did I know what was coming my way...

The day was Wednesday, February 16, 2011. I think if you ask most of us with Behcet's the day that we first got sick, we can give you the exact date. Why is this? Because it has changed our lives so dramatically and not for the better.

I was living in St. Paul, MN at the time and working in Eagan, MN. I woke up feeling horrible but had missed a couple days that week and the week before due to being sick. I forced myself to go to work thinking "I need to show them I'm sick". I have this horrible need to show people I'm not lying and that I'm really sick. I also have this stubbornness to try to work no matter how sick I am. Why? Who knows.

By the time I made it to work, which was a twenty minute ride, I was coughing and having a hard time breathing. I put myself on my doctors schedule who I was working with at the time, Dr. Gladen, and my friend/coworker Amy roomed me. The more I talked, the more I coughed. The more I moved, the more I coughed. It was horrible! I had never had anything like this. My respiration's were 44. Normal adult respiration's are between 12 and 20. I had an x-ray and labs done. She thought she seen a spot on my lungs and treated me for right middle lobe pneumonia. At this point I also had a severe sore throat, the worst I had ever had. It actually felt like there was something in my throat. Upon exam, my soft palate was lower than it should be. She was concerned I had an abscess in my neck. I said yes to a CT scan since this was the worst pain I've been in my life. My CT scan came back normal thankfully, the final read on my x-ray by the radiologist was normal as well, and lung sounds on exam was normal too. So if it was all normal, why was I feeling so crappy? Why did I get better on the z-pack? All questions I didn't ask at the time. I assumed it was early atypical pneumonia.

Also at this time my white blood cell count and neutrophils were elevated, while my lymphocytes were low. I continued to be sick until the weekend with the next 3 days being the worst. Looking back, I definitely should have been in the hospital but being the stubborn person I am...I recall having to sleep sitting up. One time I thought I was well enough to lay in bed, what a mistake that was. I woke up coughing out of a dead sleep and couldn't catch my breathe and I started to see stars and thought this is it, I'm going to die so I whacked my significant other, Jason, with my hand to wake him up. Thankfully I was able to catch my breathe. That was definitely one of the most scariest moments of being sick. During this sickness there was several times where Jason asked me if I wanted to go to the hospital. If I had known then what I know now, I would've gone.

Guess what? 14 days later the symptoms came back but they were a little different this time. This time my throat still hurt and it felt like something was still in it, but I had white spots like you would with strep throat. Little did I know at the time they were small ulcers starting. You could actually see the gland on the right side of my neck. Now when you work with nurses and doctors and they are like "whoa, that's crazy!" what do you think? This time I was tested for mono and strep throat again. All negative but was treated with a z-pack since it helped the first time. I requested to be treated again as last time the symptoms worsened over night.

At this point I thought this is it. I'll get better. Famous last words...

I continued to have oral ulcers, finger joint pain, and severe episodes of fatigue. I saw the doctor I was working with at that time, Dr. Doyle, for further testing. She ran some basic tests checking for vitamin deficiencies, ANA, inflammation markers, and we cultured the ulcers. All negative except a slightly elevated sed rate and CRP.

Next was a visit to who would be my first rheumatologist, Dr. Oberto-Medina. Time for more testing:) While I was at that appointment, I had what looks like the lupus rash on my face and a rash on my chest. She was so convinced that I had lupus, she told me to stay out of the sun until my tests came back. Guess what? All was negative except for my elevated sed rate and CRP. She wanted me to follow up in 6 weeks. Something to note at this time: one of my lupus anticoagulants was initially abnormal but upon further testing it was negative.

During the time of waiting to see Dr. Oberto-Medina again, I started having some GI symptoms. Diarrhea and horrible abdominal pain. Could it be Crohn's? I had also lost weight since first becoming sick.(yippee!) And not on purpose. So I was off to GI. Colonoscopy and endoscopy were next on my list of the many tests I would have. Both tests came back negative. Surprise surprise. At this point I remember thinking what the hell do I have? This is not normal for someone to be going through. A 32 year old should not be feeling like she needs to sleep at all hours of the day. She shouldn't be waking up with swollen fingers. She shouldn't have ulcers almost constantly. I was starting to get pissy that we couldn't figure it out.

I went back to Dr. Oberto-Medina with this information. This was the first time I had heard the "B" word. And by B word, I mean Behcet's. She wanted me to go to Infectious Disease to rule out anything else before treating me for Behcet's. Seriously? Haven't I been through enough? Off I went...

I seen Dr. Worku, who is the best infectious disease doctor out there as far as I am concerned. The fun part of this visit was getting checked for every possible STD out there. All blood tests thankfully and girls will know what I mean:) I happen to have a cluster of three ulcers at the time of visit so we once again cultured the ulcers. Everything came back negative. During the visit, he said as long as the tests are negative, he agrees with the diagnosis of Behcet's. Even put it in his documentation.

Back to Dr. Oberto-Medina another six weeks later from the last time I had seen her. This is when I started getting treated for the horrible B word.

Looking back, my first real experience of a flare up was the week of Thanksgiving 2010. I had same symptoms- severe sore throat, fatigue, and just felt like shit. I thought it was a horrible virus at the time. What I wouldn't give for it to just be that now. But hope in one hand, shit in the other and see what fills up first, right? Ok that's a bit negative but that's how I feel today...just one of those days.

It's been a struggle with meds and doctors since this and I will share more of my story in another post. If I continued on this post, I think I'd lose you as it's long enough as is:)

"Health is like munny, we never have a true idea of its value until we lose it."Josh Billings