LKK061111

My entire life I was always a "sickly" kid. Each year I always had strep throat numerous times. I began having kidney stones at age 10! Multiple aches & pains in my bones. Always some kind of an infection or virus. In April of 2009 I began having difficulty with food digesting. I was unable to eat & it was becoming difficult, therefore I went to the ER. I was diagnosed with GERD & a CT Scan showed I had an inflammed appendix. I was admitted & my appendix was removed the next morning. At this point the diarrhea I was experiencing was unlike any Ive ever had before. I was having episodes daily upwards of 20+ times. This went on for months. I went to see a GI dr & after colonoscopy & tests I was diagnosed with a Irritable bowel disease. The diarrhea continued from April 09-Jan 11 before I was able to go into a remission. Towards the end of 2009, in August I awoke one morning & my eyes were as red as fire hydrants! They hurt so badly, I didnt know how I'd make it to my eye dr quick enough. At first I believed it was due to me wearing my contacts longer than the recommended time & sleeping in them. I had problems before but this time it was bilaterally. Once I arrived & saw the dr, I learned I had iritis-inflammation of the colored part of the eye which is the anterior chamber. I also had a corneal indention due to prolonged use of contacts. At the time the iritis didnt seem so important, but it is absolutely now!! Then around the end of September, the lymph nodes on the left side of my neck began to swell. It was behind my ear, my hairline, jawline, down my neck, they were all hard & very very painful. The size of the swollen nodes were in comparison to a m&m. With each day that passed, I felt worse & worse. I didnt ever get a cold, a sore throat, or even a runny nose. Any of which you would think goes along with swollen nodes. Well, the more painful they got, the more I couldnt handle it so I went to the ER again. I was diagnosed with lymphadenopathy-just an infection of my lymph system & nodes but the causes was unknown. They did check me for strep & mono, all negative and as I stated, no other symptoms. I was referred to a GP bc at the time, I didnt have one. I was put on strong antibiotics & followed up with a new doc. In the meantime, I was also experiencing uncontrolled migraines that were relentless. The lymph nodes didnt go back to normal for 10 months. I was seeing my new GP every week, my GI dr about every 2 weeks. The pain throughout my body was becoming more and more unbearable. I wasnt sleeping very good, constantly waking up in pain. I started getting all these unexplainable bruises & skin sores that I had no idea where they were coming from!! My life was changing & I had no control over it. It was just the beginning of me being stuck inside my home against my will. After months & months of suffering in pain, I asked for a referral to pain management as well as a Rheumatologist. I was blessed to get a wonderful pain management dr who actually cares. She follows strict guidelines & rules which is what I believe all dr's should do to responsibly prescribe longterm usage pain meds. She ordered numerous tests right away. More than others had done. Bone scan showed I had arthritis throughout my spine & neck along with bone spurs & a herniated disc at the L5-s1, arthritis in my shoulders, wrists, knees, foot..pretty much all over. I specifically named the Rheumie bc I had others who recommended him, boy would I regret that later!! The Rheum. said all I had was fibromyalgia (which according to him the arthritis shouldnt be that painful) & that I was depressed & needed to go talk to a psychiatrist!! What a tool!! I told him so too!! I told him he was failing to help me as the oath he took. I didnt just have fibromyalgia & for him to tell me there was nothing else he could do for me was awful. How could he do such a thing? Why as my dr wouldnt he want to search for the answers to explain these things. To him none of these were related. To me, a 30 yr old doesnt wake up one morning & beginning having surgeries & non-stop dr visits & meds coming out the wazoo unless there is a major cause!! He told me to go find someone else to help bc he was done. He was only 1 of about 50 doctors who were unable to figure it out. That was the last I saw of him, good riddens!! However, later I did call his office & leave a msg for him letting him know that it absolutely was not just fibromyalgia & I wasnt depressed!!

Into 2010 & the GI problems are still going on, the severe pain, the awful migraines, extreme exhaustion. I started having pitting edema in both of my feet. It was like I was 9mths pregnant. HUGE feet, so much fluid I'd press down on my skin & it would leave an indenture for minutes. It was so painful & I was unable to walk without discomfort. My skin was stretched so much I thought it might split at one point. They stayed swollen for weeks, go down for a few days but overall were swollen for about 5 months before I didnt have any occurrence. I was on phenergan every single day but I was having an increase in symptoms & my liver enzymes stayed elevated & wouldnt come down. My GI decided to do a scan of my gall bladder, liver, & pancreas. Results showed I had inflammation in my gall bladder & gall stones. He would do a liver biopsy to determine what may be happening with my liver. After my gall bladder surgery, I was so sick. I was never so affected by a surgery in my life. My stomach was HUGE , black, blue, purple, green...I'd never seen such bruising in my life. I also developed a thrombophlebitis in my right arm at my IV site. At the time, it was written off, but now, it makes perfect sense. Once I finally recovered from that, my chronic diarrhea seemed to only become worse just bc I no longer had a gall bladder. Also, an endoscopy showed I was having bile reflux along with my GERD. Great another medicine. At this point, my medication count was about 15. Gall bladder was taken out in August of 2010. After healing which took about 3 months, I was taking cholestramine to help bind my bile acids to reduce diarrhea. That liver biopsy showed I had non-alcoholic fatty liver disease. Finally about February of 2011 I began having some relief from the diarrhea. My pitting edema returned but when it returned, it was coming up my leg as well. This time it didnt last as long though & after about a few nights of elevating it was gone. Amongst all of this that had been going on, my then fiance had asked me to marry him on December 26, 2009 & I said YES!! Throughout all of my hospitializations, dr visits, meds, crappy days, tears, prayers, & bargaining, I was planning our dream destination wedding at the beach!! June 11, 2011 was our big day! On May 21st I was hospitialized with a 6mm kidney stone & bowel problems. The dr's tried so hard to figure out why I was sick from the beginning. I had a team of 5 doctors going through all of the past 2 yrs trying to fit the pieces together. The next day, they came in & one sat on my bed & explained they could not figure it out & that they were very sorry. I didnt take that so well to say the least. I was fed up. I couldnt take it anymore. My life consisted of me at home every single day of my life!! She explained that they absolutely thought I had a rare disease that was probably auto immune but I needed to go to UNC Chapel Hill in order for them to find out. UGH!! Another doctor(s) really??! But first my wedding!!

I couldn't imagine our wedding happening in about 19 days, how was that gonna be possible??!! It was only possible bc I had to forego kidney surgery until after our wedding. I could not postpone. It was the one thing I was using to keep me going. My happy when I was sad & didnt have much to look forward to. I needed to go through with it for many different reasons. It was absolutely wonderful, gorgeous, beautiful day. God blessed me with 4 days I was able to be decent. Sure I wouldve wanted to feel 100 times better, but it was better than it couldve been. My dad provided me with an awesome day I cherish. Due to me being too sick, I had to come home 2 days later. I was schedule for surgery on June 21st. to have it removed. Immediately upon waking from surgery barely had my eyes open, I felt my upper lip was really swollen. I had developed 3 oral ulcers in a cluster. Strange. I even asked if someone yanked the breathing tube outta my mouth & hurt me. :( Anyways, I was discharged with a J tube inserted in bladder & urethra to drain for 12 days!!!! NOT a good thing at all!! Those 3 ulcers turned into 18 ulcers over the course of those 12 days, I was litterally in the bed & could not hardly move from the pain of this foreign object inside of me!! AWFUL!! Finally after 12 days of terror I was happy to be getting it out, or so I thought I would be. About 30 minutes after removal, I began having the worst bladder spasms. I was doubled over, sweating, about to really pass out!! I couldnt even drive. Worst part was I had medicine for the bladder spasms....at home!!! Once I made it 3 hrs later, I finally was able to rest on bathroom floor! After about 6 hrs of the worst bladder spasms that felt like I was being stabbed repeatedly, they stopped. I only had a few brief ones for the next month or so & then I was alright after I was completely healed. My next move was to make it to UNC Chapel Hill-a major University hospital who would hopefully figure this out!! I just had to get to the Rheumatologist who would definitely know more than the average doctors I had been seeing for the past 2 yrs 4 months. Finally, I scored an appointment. Once I got all my records together & pictures, timelines, journals of symptoms, etc. I met my new Rheumie. Dr R. I was given the answer I so desperately needed but at the same time I was also given fears I had before. I was finally diagnosed with a very rare disease that causes systemic vasculities & inflammation. I have Behcet's Disease. Whew, I was relieved now I have a name to my horror. However, its a very serious disease & it can cause a lot of damage. Since my diagnoses in August of 2011, I quickly began having more serious problems. My behcet's took a liking to my lungs & I started becoming short of breath, having chest pains, & was unable to even stand & talk at the same time with out getting short of breath. Like so many times before, I wrote it off, it must be my asthma or Im being silly even. Nope, it continued & I had tests. Pulmonary functions showed a restrictive lung disease process along with the scans but we are not sure which thus Im having to go see a Pulmonologist, but first the dermatologist Nov, 7 & also on Nov, 7th-I have to have a MRA. Besides the lungs, I also began having CNS involvement. Hand tremors, coordination & balance problems, speech problems as though my brain & mouth were disconnected, tingling numbness burning cold almost like frostbite all in my hands bilaterally....which I dont think I mentioned but whenever something happens to me, its always bilateral! Memory loss with the duration of minutes such as if my husband & I are talking & Im engaged & paying attention, after he says something, I may say what were your last few sentences bc I cant remember them. I forcefully try to make myself process what he just spoke, but it isnt there, I cant find it. I have always been a very articulate & intellectual person, now its as though my words are all mumble up & cant find their way out of brain into my mouth & out!! Im known in my family as the "smart" one....I can remember things without studying. I can look at something & remember it, mostly numbers. Hence me loving mathematics :) Once recently I was speaking & in the middle of my words, I would stop midways like I applied the brakes in the middle of tommorrow. It would be in conversation & I could not control it. Sort of like being nervous and freezing mid sentence, except this was mid word! Tomm I would get out but would not be able to even make myself finish the word, I would have to start the entire word again. It was rather intense & a feeling of discomfort knowing I had no control over my brain, scared. Also my personality has changed.....all of these things are caused by my behcet's! & lastly, as I stated if something happens its bilaterally, well back in September my 2 index fingernails began to form a hole at the same exact time in the same exact spot on the cuticle. Within a month, my 2 fingernails had fallen off completely. My vision has changed drastically within 10 mths, eyes are always painful. Hard to focus once in a while. All of these things are on & off.....certain things such as the constain pain & headaches, I have those daily, rain or shine. Until just this month the ulcers were still here, as of today, 10-27, the medicine Colchicine has helped. I am taking one day at a time. Only GOD can help me keep a positive outlook. Otherwise, I dont know how I would be able to suffer like this on my own. Every pain Ive felt He has felt & a whole lot more.

Ive got the MRA coming up, Ive got to see the Pulmonologist, Neurologist & Dermatologist. I also contacted Dr. Yusuf Yazici at NYU in New York. He created the Behcet's Disease Center. He is the dr to see....I have an appt for December 7th. I have to travel from NC to NY. I am hoping I will be able to bc I really need his help. This journey shall continue :)