Fighting A Middle Eastern Battle

I dedicate this photo to Gramms...Love you xoxo

Searching For a Diagnosis

I have been struggling with a very rare chronic illness for almost three decades. I'm an educated professional woman, I've attended several different colleges and was a Manager of Administration for a pharmaceutical company (before I became disabled by this disease), for more than ten years, but what I have been through for the past three decades with my health and trying to figure-out what was wrong with me, is more than anybody should have to endure in a lifetime, the experiences and knowledge I have gained have been more of an education than any college or professional experience anyone could pay for, so I wouldn't change or trade my life with anyone.

I Have Encountered a Couple of Close Calls:

Once in my twenties - I ran 104 fever, rash all over, kidneys and lungs had blood and inflammation and I was crippled and told I had inflammation in my body of a 90 year old woman.

I suffered a dissecting aneurysm in my right artery on my neck which was close to my brain.

Both times I was hospitalized for a week, but I managed to make it through both incidences for a reason. The first time I was hospitalized, they initially diagnosed me with possible Lupus after they suspected I was in renal failure. But they were wrong, what I did have was very rare and not an easily diagnosed disease called Behcet's .

My Dream

My dream is to help people, by sharing 30 years of my life I spent getting misdiagnosed by medical doctors and raising awareness for Behcets here in America. Gynecologist diagnose the disease as herpes, optometrist think uveitis is the only form of eye disease, not realizing conjunctivitis is a symptom of Behcets and medical doctors overlook this disease because of it's rarity and the lack of labs needed for proof of diagnosis. They are unable to pull a particular lab test in order to diagnose the disease, preventing your primary care physician sending you to a rheumatologist. I had two rheumatologists tell me it's more prevalent in men, which is absolutely 100% wrong. It happens more in men in the Middle East and more to women in America. The diagnosis is based on criteria which is a particular set of symptoms: oral ulcers, genital ulcers and uveitis which have to be biopsied and compared against tissue of other Behcet's lesions, skin sores and bruising, keep in mind these are all just "Surface Symptoms," there are a whole host of symptoms that are happening on the inside. The "Surface Symptoms," such as the ulcers and skin sores to a Behcet's patient, are minor and unimportant occurrences compared to how you feel on the inside, so until you have an ulcer on the outside of the genital area and not inside the cervix, or a uveitis episode, it's very difficult for the other two symptoms to be relevant in both a patient and doctor's mind. You would have to visit the same physician for 20-30 years in order to even get a possible diagnosis, unless you were to get the uveitis first -which doesn't typically happen in that order because Behcet's is a progressive illness.

Therefore, I had to be my own medical advocate by doing research and profoundly pondering on all of my symptoms and occurrences. There are several steps I had to take in order to obtain a diagnosis. I have documented a list I would like to share in my book. A couple of things I did were: writing down everything that happened to me from the time I was about 8 years old to the most important thing I did research on the Internet. Although I realize Google can be the root of evil (you have to make sure you have legitimate websites), I thank God for Google and the people whom founded this search engine everyday. I don't believe I would be diagnosed if it wasn't for the Internet there are limited books in the library on this disease, which I would so love to change, and I wouldn't have known where to start with research. By raising awareness and sharing my experiences; maybe more doctors will pay closer attention, maybe people will become more aware of what may be going on inside and outside their own body in order to convey the key symptoms to their physician. Even if this only helps one person, I will be helping generations. Please help me fight this battle by spreading awareness. Send my blog around the world to your family, friends and doctors. If you want to talk about what you're going through: from just feeling sick, financial problems, doctor problems, relationship problems, etc - I'm here to listen. If you would like to make a donation, click on the Behcet's link on the right toolbar. I would greatly appreciate any help people can contribute to the cause.

Once Upon an Ulcer

Not even a full year went by after undergoing a full hysterectomy, for suspected endometriosis -I developed a very painful lesion in the lower region because I no longer had a cervix or ovaries for the ulcers to attack. Needless to say, I went to the doctor immediately because I didn't know what was going on. While the doctor was examining me, she told me it was a herpes lesion. Three days later I found myself in the ER room because my arms were going totally numb. After the doctors performed a neurological test on my arms, (poking them with several needles while my back was to them) I had no feeling whatsoever - they advised me to see a neurologist. Immediately I phoned my gynecologist who diagnosed me without proof of biopsy and she still continued to claim I had herpes - and numbness is one of the symptoms.

I had been married 16 years and only had sex with my husband; this was not a very good thing to hear. It devastated me. I did not go home to my husband and family the day of the biopsy, I went to my brother and sister-in-law's to do some soul searching and think about what I had been told. After lying there in the bed in pain and sick, I reflected all day and I come to the conclusion that there were too many unanswered questions, and too many episodes with my health history dating back to when I was around 8 years old, for this to be that simple or to make sense. My husband was very healthy, I was the only one that was sick constantly. I had this little voice inside my head telling me there had to be something else that was wrong. I knew I needed to get to the bottom of it... and get there quickly!! I went home and typed in joint pain and genital sores on the computer and that's when the unexpected came up... American Behcet's website. I never even heard of this horrific disease before. It is a very rare illness that typically happens to people of Middle Eastern descent. The next day I went to work, which was Valentine's Day and my joke of the day was "I had VD on VD day!" But I really had "BD on VD day!" When Mike arrived home from work, I decided I would play a dirty trick on him. If it were herpes, he could have lesions too. People that know me, know when I can muster up the strength to be funny, I take full advantage in finding humor in whatever is happening both good and bad. As he walked in the door, I pointed my finger to the downstairs bathroom and ordered him into the bathroom like a nurse or mother telling a child, "Drop your pants!" He had a look of excitement and confusion. It was quite funny. As he did what I said, I dropped to my knees grabbed, yanked, fondled and pulled flippantly. He ask, "What on earth are you doing?" I said, "Hush, be quite...I'm doing an investigation!" He said, "An investigation of what?" I said, "I'm looking for sores!" He said, "WHAT? Are you done yet?" I said, "Yes, you’re clear." He said, "Great I'm happy, but what's going on?" We were both cracking up laughing, then I proceeded to explain to him what had transpired over the last two days and the possibilities of what could be wrong; Behcets or Herpes and we had to wait for two weeks to get the results back from the biopsy my gynecologist had done. We both knew it wasn't what they said, we knew in our hearts that it was something more and that's when our lives changed forever.

Current State

My current state is stable - Elton John I'm Still Standing


I had my second treatment of Rituxan on Tuesday and I feel great right now! This is good news because we didn't know how I would react. We just have to pray it stops most of my symptoms and gets me functioning on a normal playing field (it's true, when your sick your mind's somewhere out in left field...striving to make it through the day). I'm waiting on some results from my urologist. Don't have great news there. They found several cysts, mass, swelling, a narrowed bladder and kidney stones in both kidneys and on the liver. The one mass that's in my right kidney is out of range for the size so I have to go get more ct scans of it. I'm praying this will shrink from the treatments I just had. I'm also hoping and believing they are all just ulcers on my liver and kidneys as I had on my ovaries cervix etc. I will keep you posted.

Treatments I'm Taking

Rituxan
Immuran

Conclusion

I'm up for any type of suggestions people may have to get my story published and publicized. I could so imagine this in a motion picture it has all the right elements, mystery, love, sadness, drama and laughter. What do you think about E-books? I'm wondering if this would be a good avenue and maybe write on specific topics since some people only have time and are interested in a particular item. A link I found which discusses that.

Please find the outline for my book, thus far, as follow:

Introduction

Chapter 1 Finding A Dr. Who Works for You and Not Against You
Chapter 2 Describing and Telling your Symptoms to the Dr.
Chapter 3 Research, Research, Research
Chapter 4 How Chronic Pain Effects Your Brain
Chapter 5 Never Judge a Book By It's Cover
Chapter 6 Are Viruses, Environments or Genetics the Cause? Or, Could it Be All Three?
Chapter 7 Knowing the Difference between a Syndrome and A Disease
Chapter 8 Relationship: Friendship, Spouses and Family
Chapter 9 The Cost of A Chronic Illness
Chapter 10 Doing What's Right for You, Both Physically and Mentally May Mean Doing What's Right For Others Around You: Exercising...finding the right type of exercise for your unique body and situation, Eating right, dealing with stress...know your limitations.

Any suggestions would be most helpful! If you need to talk or ask me questions I'm here for you. Just e-mail me and I will be happy to answer any questions you may have.

Beyone - Somewhere Over the Rainbow