SO...I've got this thing...

On June 23rd I started getting tingly lips and thought I was getting a cold core. Not suprising because we were only two days away from my parents 40th anniversary party and I was in overload. I figured it was stress related. I started taking Lysine ( vitamin for cold sores) and increasing my chapstick ( as many know, I'm already an addict). By the 25th, the night of the party- my lips were so dry and I couldn't seem to get control with chapstick or blistex like I usually do. By MOnday they were burning. I thought perhaps I had sunburned lips. Maybe it was a cold sore that was going to hit my like a ton of bricks. I didn't know.



Around the same time I started getting some arthritis symptoms in my hands and fingers. Very painful cramping and difficulty opening and closing my hands, gripping things, etc. For me- it was really frustrating as I've been dealing with the carpel tunnel unsuccessfully for 2 years now but just added it to my list of ailements. My chronic neck pain that I've also had for a few years increased and I was just super crabby about it all hitting me at the same time. Now my lips were all consuming. The pain and burning was so intense I often times couldn't finish meals and kissing my babies made me physically cringe because of the pain. Even though they looked fairly normal from the outside, they were on fire and felt terribly chapped and also felt like they were terribly swollen. When every over-the counter lip ointment at Walgreens didn't work, I headed to the internet to google natural solutions or perhaps what chapped lips and joint pain could be symptoms of.



After reading about a bazillion different diseases I don't want to have, the searches kept coming back to Anemia and Vitamin Dificiency, including D and B. That made sense to me since Alaric has been iron deficient so I made an appointment with my nurse practioner. She was great and even though the receptionist giggled when I told her I was coming in for chapped lips, my NP really did want to do something about it. She ordered labs and sent me home with a topic steroid to put on my lips to reduce the inflammation and get some relief while we waited for the results. In days, my lips felt better and I thought all I now needed to conquor was the chapped stuff since the burning had gone away. Tests results came last Friday with all normal levels of everything.


While I was happy to have normal results, I was truly hoping I could have found my answer in a vitamin suppliment. In the last few days, the lips have gotten worse and worse. Now the worst they have been. A layer of white stuff ( like when you eat too many sweetarts) appeared just inside my lips and the tiny tiniest little bumps have appeared on the outside. Yesterday, I decided that perhaps my addition to chapaid products was getting the best of me and I was so dry and chapped becuase my body couldn't function without it. SO- my brilliant mind thought I could go cold turkey in one day and only use the steriods ( since those made me feel better). By 11AM, I had applied the steriods 40 times and by the rtime I got the kids to Brian's work for a picnic lunch, I was miserable. tears and conversation over lunch. I stopped at Walgreens on the way home and picked up two new products my mom had heard about and as soon as I got my kids buckled into their seats in the parking lot of Walgreens, I felt like a crack addict. Like a real addict. I couldn't get the package to the new cream open fast enough- I threw the wrapper on the floor and couldn't get the lid off and the product on my lips fast enough. Within seconds I felt like a million bucks and can only describe it as how a heroin addict looks and must feel when they first put the needle in their arm. Within two blocks however, my lips were burning again and I got scared.



My crack addict moment, the pain, the panic, and seriously beginning to think I was losing it as no one else could see my problem- I got the kids to sleep and made an appointment with my dermatologist for TODAY to get someone else on my team to help me fight this battle. Then, I again hit the internet. After a very short search, I found the most amazing chatroom with 502 entries from people exactly like me who were suffering from swollen, sore, burning, chapped lips. Most had been to doctors, many had been to numerous ones and nothing was getting better. These people shared their ideas and their treatments and what their doctors had shared with them and what was and wasn't working for them. SOme had been struggling for YEARS. KNowing that others weren't finding relief made me sad however I realized I wasn't crazy at all. And I wasn't alone. I send the link (http://www.everydayhealth.com/forums/asthma-and-allergies/topic/swollen-lips-help?page=1) to Brian and it helped him understand alittle about what I was feeling too.


I made lists of what others had discussed with their doctors and what medications, perscription and over the counter, were working and headed to the Doctor today with my kids, the DVD player, and a favorite movie to keep them occupied.


I feel OK about how things went down. He was thoughful and sympathetic and when I showed him the 20 or so ( out of a 100 pages) I printed from the internet, he rolled his eyes but he listened and he looked through things with me. Ultimately, he has diagnosed me with an auto-immune disorder called Lichen Planus. It's a disease that manifests itself as a rash on the legs and arms mostly however many get symptoms in the mouth that resemble canker sores, chapped lips, raw insides, and a white film. it can also be in other areas like the scalp and even the genitals. After a long talk about my history and me explaining that I had never heard of this and if it is genetic, I knew no one in my family- he began to explain auto immune diseases and how they are just there and they appear with little or no warning with little or no family history. For example, Diabetes. It's genetically pre-disposed but not everyone in a family has it and it has to start someone. He says with a disease like LIchen PLanus, often times symptoms can be written off as something else and treated another way and the disease goes undiagnosed....



so perhaps the canker sores I occassionally get with stress aren't the herpes virus. And the rash I get on and off on my right wrist for years and years is not a sensitivity to the watch I wear. And maybe, just maybe the chronic yeast infections I've had since Amara was born aren't yeast at all. WHo knows. No way to know now. I do know that it's not contagious and I can't pass anything to anyone by touching, sharing glasses or kisses or contact.




The disease is there, it always has been and it physically presents itself in a rash and then goes away on it's own or with treatment. While he thinks THIS IS IT, I'm skeptical. After reading about 100's of others and never once hearing about this disease I just wonder if it couldn't be something else. I made him promise me that if I'm not seeing results in two weeks when I return that he will help me to dig deeper. he promised. That's why I decided to take his advice, which was my choice, and take a very aggressive approach to knocking this outbrreak OUT.



Here's the details I need you to know. He has put me on a topical cream to only be used twice a day inside and outside of my mouth to treat the rawness, soreness, and chappedness. The only other product he will allow me to use is Petrolium jelly. He wants me to kick my addiction as he knows my lips can't make their own moisture anymore but realizes now is not the time to kick it and to wait until I'm in a better place. So- I'll be walking around applying vasaline by the gallon with super shiny lips. He's also put me on a 16 day regimine of Prednisone steriod( orally). it's a high dose 4 times a day for 4 days, then 3 times a day for 4 days, then 2 times for 4 days, then once a day for 4 days. The side effects are significant. Severe headaches ( as many know I suffer from chronic daily headaches), weight gain, swelling, shakes, etc. Although he says that my weight gain and swelling with probably not be significant, it's hard not to think of the other Prednisone patients I've seen who look like different people because of their treatment. He says it may only be noticable to those who see me often and know me well and would most likely resemble the recovery swelling after wisdom teeth but each person responds differently. he also said that I will FEEL swollen, even if I don't look it and that for some, the 16 days are very hard but worth it. I'm scared. I was hoping a little vitamin or an antibiotic or anti fungle would take care of this. I never anticipated walking in today with a problem and walking out with a diagnosis of an auto-immune disorder.



I'm sad. While this will probably be less life-changing than a food allergy, I have something wrong...with my body...for possibly the rest of my life and it's something my kids could get later in life too. Mostly, I'm terrified for the next 16 days. Perhaps I'll glide right through and this will just be another thing I do each day. My pains and ailements are already tough somedays so thinking about what else I might feel like makes me ill. I'm also in the best shape of my life and comitted to my fitness goals. Gaining weight, having headaches and physical pain that might prevent me from continuing to run, etc gives me butterflies in my belly.




I'm asking for your prayers. I know that this is so much better than so many other things people face and I am so very blessed. I suppose I'm just asking for you to send your good thoughts my way and to pray that this works and I only have to do one round of Prednisone. I ask God to heal my body and give me strength and patience ( which sometimes I have little of). If I look different- this is why. If I act different- heres the answer. No doubt I'll get though it and no doubt I'll have all of you to help me.

Update as of today...my internet searches continue and while some of the news is scary- knowledge is power and I'm learing really quickly that I have to be in control of my body and my healthcare. Since I found that while the disease is there, the triggers are vast- many being related to food or substance allergies. SO today I called my primary to get a referal to an allergist for testing. Dentists usually diagnose oral LP since it can start very small as a white, lazy film. SO, I've contacted my dentist to get more information. I'm learning, I'm dealing, I'm praying.

my symptoms are worse today...no gummy raw insides today and I've only put on petrolium 4 times all day ( a normal day months ago would have been 20 times atleast by now) however my tougue and throat are burning and eating has been almost impossible. My whole face feels hot from the inside but not the outside. Perhaps it the Prednison, perhaps the LP. WHo knows.

Pray for me!