Flash forward through college, to 2007. I was 24, and not much had changed. I still worked out every day, I had a few beers here and there, just a typical 20-something, but I was probably the healthiest I'd been since high school!
So in July when my lips 'broke out', for lack of a better word, I just assumed I was having an allergic reaction to a new lip product. I took a few Benadryl and Advil (for the pain) , drank a lot of smoothies (because I couldn't eat normal food) and spent some time convincing my boyfriend that no, my lips weren't melting off (although that is exactly what it looked like).
Within about two weeks my lips cleared up and I went about my normal business...
Until right before Thanksgiving of the same year, 2007.
Let me start by saying, THANKSGIVING IS MY FAVORITE HOLIDAY! Food, family, no stressing over presents...oh, and did I mention the food? Well, a few days before Thanksgiving 2007, four months after my lips first 'broke out', my lips broke out again. This time for no apparent reason. I hadn't used any new lip product, and I hadn't done anything different.
Man, was I bummed.
My favorite holiday was right around the corner, and I couldn't eat or sleep because my mouth and lips hurt...it was awful. I decided it was time for me to go to the doctor!!
Off I went to my family doctor, I'll call him Dr. P, he examined me, did some blood work, gave me a steroid shot, and sent me home to rest. Sadly, the steroid shot did nothing, the test results said I was completely healthy and Dr. P didn't have an explanation. Again, in about two weeks my lips cleared up and I went back to my daily activities.
After this second episode I was a little concerned. I didn’t know what was going on, but I knew it wasn’t normal, so I started taking notes. The plan was to gather as much information about my day to day activities as I could so if my lips broke out again I had some documented history to work with.
The rest of 2007 and the beginning of 2008 went normal. I had a close call that might have been a small break out, but it wasn’t the full blown event I had experienced in the past.
I was actually thinking that my lips were just some weird fluke when it happened again...August, 2008. This was my 3rd, maybe 4th episode, and it started while I was on my way to Austin for a long weekend with friends.
Automatically I thought through the past few weeks in my head:
- What had I eaten before the lips 'broke out'? I wasn't eating anything different.
- Had I started eating anything different before the first episode back in July? Kind of…right before the very first lip episode I had started drinking wine occasionally...about two glasses a week. Could it be the wine?
- Had I started doing anything different back in July of 2007? Actually yes, I had started taking YAZ. I hadn't ever taken birth control, but I was in a serious relationship and needed to be responsible, plus I have never had regular periods. I should also probably mention I also had signs of PMDD; anxiety, mood swings, always feeling tired. Could I be allergic to the pill? Is that even possible?! It seemed possible, because according to my notes my lips always broke out at the end of my period...not every period...but if it was going to happen it was always at the end of my period.
- Was it the chips and salsa I ate almost every day? You might laugh, but my boyfriend and I actually considered this for many months, because before my lips would break out I would get heart burn...and I never had heart burn. So I thought maybe the salsa was too acidic or something.
- What was going on in my day to day life that could bring this on? Stress....always stress. Boyfriend stress, life stress, money stress, stressed over stress.
- Was this something I picked up from biting my nails? Yeah, it's a nasty habit. I've tried to kick it for many years, but it's sub-conscious. Could be a possibility!
- Where there signs, or patterns that happened each time my lips 'broke out'? Actually yes, it always happened at the end of my period. Not every period…but if it was going to happen it was going to happen at the end of my period. I didn't really start picking up on that until the third or fourth 'break out'. (Detailed accounts of the signs and patterns I experienced will be posted in a later blog.)
After reviewing my notes I had narrowed it down to three, completely unscientific, explanations that I was going to run by the doctor.
- Was it the wine or the salsa I ate every day?
- I might be allergic to the pill. I started the pill a few months before my first lip break out and it seemed to always happen at the end of my period, when I was starting to take the medicated pills.
- Was it stress?
As soon as I came back from Austin I scheduled an appointment with Dr. P. So, off to the doctor I went, notes in hand. I ran my explanations past him to see if we were on the same page…he didn’t know of anyone being allergic to birth control and suggested I talk to my Ob-Gyn. Other than that he prescribed some antibiotics and sent me on my way.
I was not satisfied with this doctor's visit; first off this was the third/fourth episode, I had a non-refundable trip to Mexico planned in a little over a week and I needed answers, or at least a solution!! But I had no clue who to go talk to.
The next day I woke up in the most mouth pain I had ever been in. My lips were swelling and blistering with hundreds of ulcers on my gums, insides of my lips, and roof of my mouth. For the first time my tongue felt like it was swelling and stiff too! Awful doesn't even begin to describe it. To make matters worse, Hurricane Raymundo blew into Houston, which would mean that most doctors were going to be closed, but I called around until I found a doctor’s office that was open. I braved the weather, and went to see this random doctor. WHAT A MISTAKE THAT WAS. She looked at me like I was some diseased creature, she talked to me like I was some uneducated street urchin, and she told me I probably had an STD (even though I explained to her my boyfriend and I had been together for years). My boyfriend and I were pissed, how can a person be a doctor and not have an ounce of compassion?! She did nothing for me.
Two doctors in two days, and I was still very unsatisfied…SO, being stubborn as a mule (I get that from my dad ) I called up one of my doctors who I knew would at least be compassionate, my Ob-Gyn. She was luckily able to fit me in the following day. Yay!
Day three, and doctor three. I went to visit my Ob-Gyn and I told her I thought I was allergic to my birth control because my lips (and now mouth) always seemed to breakout at the end of my period, which is when I start back on the pills with hormones. She didn’t think my mouth was caused by an allergy, but she didn’t really know what was going on with me.
Being the wonderfully compassionate doctor she is, she was able to make a few calls and get me into an Eye, Ear, Throat and Nose (EENT) doctor…in the same building. So upstairs to the EENT I went.
Day three (same day), doctor four. As he examined me I told him how all my blood work always comes back saying I’m healthy and infection free. I also told him how important it is that I get better because I had a vacation to Mexico planned and I didn’t want to get down there and have something crazy go wrong with me.
By the end of the meeting he told me that he thought I had an outbreak of herpes, he didn’t think it was the STD herpes because it didn’t look anything like it, but he said it could be the kind that stays in our bodies after we get Chicken Pox. So he prescribed me some medicine that treats herpes (of course it didn’t help at all, because herpes is not what I had), he gave me a heavy duty steroid shot (by this time I knew from past experience the shot wasn’t going to help my mouth in anyway), and left me with instructions to ‘try the medicine…if it works then we found our problem’. I left feeling defeated yet again.
My mouth continued to run its course and by the following week I could tell the end was insight. I ended up going to Mexico…even though I looked like I had a bad Botox job. Also I stopped taking birth control, because I had this feeling that my lips and my period were somehow related. Whether it was the pills that were causing it or just my hormone fluctuations I didn’t know, but it was just too coincidental it always happened at the end of my period.
September went well, but then in October I had another outbreak. This was the first time I had ever experienced two episodes so close together, two in three months! I was frustrated, stressed and depressed. Not only was I concerned about my health, I was also concerned about my job, missing so much work was unacceptable.The first chance I could I was off to the EENT.The fact that I had two outbreaks in three months concerned him. He recommended me to an infectious disease doctor, and I was able to see her that same day. Upstairs I went (because she was in the same building).
I updated the infectious disease doctor my history with the outbreaks, with the doctors, and with all the tests they had run. She asked me a million personal questions, and she wrote up blood work for every infectious disease known to man. Ok I might have over exaggerated a little, but she did test me for STD’s, and some of the testable auto-immune disorders (such as lupus). About a week later my test results were back in and I am proud to say that they all came back negative. No killer STD, no lupus, my biopsy did show trace amounts of staph infection…but the doctor dismissed that as the cause since staph lives on the skin. Sigh…still no answer.
Luckily, for some reason this outbreak was minor compared to the previous outbreaks and was gone in half the time. My boyfriend and I suspected this had something to do with the fact that I had stopped taking my birth control pill, we also suspected that the reason I had an outbreak so close to the last outbreak might have something to do with crazy hormones as well. I finished out the year completely healthy and outbreak free, and started 2009 off great.
I think my boyfriend and I had actually thought the birth control pill was really the cause for the ‘mysterious lip episodes’ over the last two years, and I had pretty pushed them out of my mind when it happened again.
The last weekend in May 2009 was my fifth, or sixth outbreak. I had gone over half a year completely healthy, then BAM! here it was again. As always, it was the end of my period, and it progressed just as normal. In my frustration I decided to document my lip progression through pictures. By Wednesday I was back at the doctor’s office. This time I went back to Dr. P. He suggested I go to a dermatologist.
So day two, doctor two…sound familiar? HaHaHa! Anyway, day two, doctor two. I met with the dermatologist, we’ll call him Dr. D. Dr. D was great, he listened to me and didn’t rush me at all. I explained to him my past symptoms, showed him the pictures I had until that point (three days worth), and shared with him all the tests I had been put through.
He was actually diagnosing me when I remembered I had‘bites’ on my arms and legs. So I asked him if he knew anything about bug bites. I explained I woke up that morning with what looked like random little bites on my arms and legs. Nothing alarming, maybe five or six on my left arm around my elbow and five or six on each leg. I thought maybe my cat had fleas. My boyfriend on the other hand was convinced it was bed bugs…I have no idea why he thought that, but he did. Dr. D said the ‘bites’ on my arms were actually lesions. (I had no idea! Thank goodness I thought to bring it up!) He then went on to tell me he thought all the symptoms I had been experiencing over the last two years were caused by Behcet’s Disease and that he would like my Ob-Gyn (who I was going to after the dermatologist visit for pain) to call him after doing her examination. He did a biopsy of my lesion, sent me with a list of lab work he wanted me to do and gave me a prescription for an anti-biotic so my lips wouldn’t get infected.
At the Ob-Gyn I explained what Dr. D suspected, and sure enough the Ob-Gyn said that she feels Behcet’s is the correct diagnosis for me (I had three of the symptoms). She added to the list of tests Dr. D had ordered. She explained to me what Behcet’s was – an auto-immune disorder. Finally! Doctors were able to give me an explanation for what was going on. It felt great. She explained that I would need to go see a Rheumatologist, and gave me a list of doctors that she recommended. She also directed me to a few websites with information on the disease.
So why was it so hard to diagnose me? She explained that Behcet’s is a very hard disease to diagnose because there are no real ‘tests’ that the doctors can run, and that since I’m a rare case (white, female) I will probably need to continue documenting my episodes in a journal and on my camera so that the rheumatologist understands all my symptoms.
Finally, after two years and several doctors I felt like I was making headway!! I felt so relieved.
My relief was short lived though. As I was waiting in the lab to get all the blood work for the Dermatologist and Ob-Gyn done I used my handy iphone to get on the internet and research Behcet’s disease. Instant information!
After reading that Behcet's can affect a person’s brain and cause memory loss, or cause blood clots that can effect the heart and lungs, or cause arthritis, and that it’s the #1 cause of blindness in China I was floored. Not only did it sound awful, I didn’t fit the criteria at all!! Behcet’s typically affects men of Turkish, Middle Eastern or Chinese decent…I’m a white girl from the US!! My family comes from Czechlaslovakia!! I almost got up and walked right out of the lab, back up to the my Ob-Gyn to demand another diagnosis. HaHaHa, you might think I’m joking…and I know one can’t pick and choose their diagnosis, but in my head at that moment that is exactly what I wanted to do. I sat there brooding at over my phone, wishing I didn’t have the internet and that I was still ignorant to what Behcet’s was.
I went home after the blood work, exhausted, and I cried. Here I was, for the most part healthy, 26, I had been nice to my body and yet my body was attacking itself. It was mutiny!! I felt betrayed by the very body I worked so hard to preserve.
I sulked for about a week. I literally felt like Humpty Dumpty; one moment I was up on my wall thinking all is right in the world, I’m having a weird lip thing but other than that I’m healthy…then the next I had fallen off my wall and broke in little pieces. I seriously felt broken.Over the next days my mood definitely didn’t improve. At work I was reading report after report online about how awful Behcet’s was and how it just stops a person from living a normal life, and how debilitating it is…and about the medicine and how sick it makes you. I was at a pretty low point. Finally my boyfriend and parents stepped in and were able to piece this Humpty Dumpty back together and in a few days I was back to my normal spirited, positive, and determined self. This time I was determined to find out if Behcet’s was really what I had, so I made an appointment with a Rheumatologist, I’ll call her Dr. J.
My mom went with me to meet with Dr. J, and I brought along my pictures and all the information from my previous episodes. Dr. D, the dermatologist, and my Ob-Gyn faxed all my tests results in to Dr. J so repeat tests wouldn’t have to be run. Dr. J was great, she explained how difficult it was to diagnose Behcet’s. I was able to explain how worried I was about all the internal things that could be happening to me (spinal membrane swelling, brain swelling, etc). She explained, first and foremost, those are extreme symptoms and not everyone experiences those symptoms. She reassured me that it is her job to make sure everything that I can’t see is healthy and that would be my job to control the outside symptoms. She really made me feel comfortable that, although there isn’t a cure, there is treatment and we will just find something that works!
I had always thought that once I had a diagnosis for my lips the journey I had been on for the last two years would end. Because of my diagnosis I realize my journey has actually just begun. These last two years have taught me so much about myself, I am stronger and more determined than I ever thought I was, I am not afraid to ask questions or put forth extra effort to seek answers. Through the last two years I learned how important it is to be flexible in your approach…and I think this applies to everything in life. If the approach you are using isn’t providing the results you desire, try a new approach. For me, documenting my flairs in a journal wasn’t enough, as soon as I started documenting my flairs using pictures I was able to get answers much more quickly.
Even though my Journey to the Diagnosis is wrapping up, the journey of managing and understanding Behcet's has just begun...forward 'ho!
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