Wednesday, December 17, 2008

What is Behcets? But you don't look sick!

Many people give me a blank look when I tell them I have Behcets. Often they tell me,
"But you don't look sick." If only it was true.

Looking back I've had Behcets Disease most of my life. As a child I would get weird skin rashes and ulcers in my mouth and genitals. I often had stomach aches in school and my parents were told I was painfully shy and had emotional issues, because there was nothing really wrong with me. So I spent hours in the therapist's office being made to feel that I was doing this to myself. I even had a period where I had numbness on my right side and spent a week in the hospital as a teenager. My parents were told I was a suicide risk, because I was incapable of handling the stress of high school and my numbness was "psychologically based." The truth of the matter was that I have never had a suicidal thought in my life. And 30 years later I now know, the episode was probably due to neurological Behcets.

Behcets is a rare autoimmune disorder of the blood vessels. Behçets disease is common in the Middle East, Asia, and Japan. It is rare in the United States. In Middle Eastern and Asian countries, the disease affects more men than women. In the United States, it affects more women than men. Lucky me, I am one of those women in the United States. To my knowledge I do not have a Middle Eastern background. My family heritage is American, Austrian, German, French, Welsh, and English. It blows my mind how this disease knows geographical boundaries and sex differences.

Behçets disease tends to develop in people in their 20's or 30's, but people of all ages can develop this disease. I can trace back symptoms to childhood, but I wasn't diagnosed until I was 40 years old after having a heart attack. And even then it was a long and difficult path to get to the bottom of what was causing all of my problems.

The exact cause of Behçets disease is unknown. Most symptoms of the disease are caused by vasculitis (an inflammation of the blood vessels). Inflammation is a characteristic reaction of the body to injury or disease and is marked by four signs: swelling, redness, heat, and pain. After having angioplasty it was discovered my arteries were FOUR times their normal size due to the inflammation.

Doctors think that an autoimmune reaction may cause the blood vessels to become inflamed, but they do not know what triggers this reaction. Under normal conditions, the immune system protects the body from diseases and infections by killing harmful "foreign" substances, such as germs, that enter the body. In an autoimmune reaction, the immune system mistakenly attacks and harms the body's own tissues. Behçets disease is not contagious; it is not spread from one person to another. Behçets disease affects each person differently. The four most common symptoms are mouth sores, genital sores, inflammation inside of the eye, and skin problems. Inflammation inside of the eye (uveitis, retinitis, and iritis) occurs in more than half of those with Behçets Disease and can cause blurred vision, pain, and redness. Thankfully at this point, in regards to my eyes I only deal with constant dry eye syndrome and conjunctivitis that can be very difficult to get back under control.

Other symptoms may include arthritis, blood clots, and inflammation in the central nervous system and digestive organs. Behce’s Disease has the ability to involve blood vessels of nearly all sizes and types, ranging from small arteries to large ones, and involving veins as well as arteries. Because of the diversity of blood vessels it affects, manifestations of Behcets may occur at many sites throughout the body. I struggle with arthritis in my fingers, knees, hips, and lower back. The arthritis in the back has been so bad that I have spent time in a wheelchair. Currently I do use an electric cart when I am in the large supermarkets, especially if it is the end of the day. Overwhelming fatigue is a major battle for me.

Another huge issue for me is how it affects my brain and language skills. Doing this blog is a big risk taking adventure for me. Thankfully Tina and a couple of other friends do edit for me, but I live in fear of making a fool of myself. Before my heart attack I was an award winning teacher and took pride in my professionalism. Now I live in a world where "brain fog" is an every day word for me. Sometimes what comes out of my mouth or my writing is nothing but gibberish. Sometimes I substitute words that have no relation to what I am saying. Other times things don't make it from my short term memory into my long term memory. My children will often say to me, "You've already asked me that 3 times in the last 10 minutes. " Or my friends will say, "We've been over this three times." And I hear the exasperation in their voice. I'd give anything to remember, but in my mind it's like hearing it for the first time. And yet people look at me like I am faking my illness....because I look good on the outside. Some days I wish my body was transparent, so people could see my blood vessels are really inflamed.


Gingerbread House Layout

I finally finished my sister's Christmas present today. I was supposed to meet my parents in Michigan tomorrow and we were going to exchange Christmas presents. However , the ice storm changed those plans. So I just dropped everything off at UPS.

The gingerbread house layout is what I did for her for Christmas. She isn't really into scrapbooking, but she loves to have pictures throughout her house and work. The cookie frosting was a new technique for me and it was very easy. I used Tulip's slick paint and dropped beads as jimmies on top of the cookie. I then let it dry out over night.

Fresh Prince Scrapbooking Parody

This is a MAN who scraps! Good for him and the rap is funny. We all need a bit of levity at times and I personally love this video. It's short so take a breath, take a minute and take a look.


Inside Scrapbooking Commercial (original)

This is a perfect video for how we all feel at times. We all need to be able to laught at ourselves sometimes right? Enjoy!

Saturday, December 6, 2008

Queen of Hearts


Wow, making the Queen of Hearts was a lot of fun! I stepped outside of my comfort zone and actually sewed the lace onto her outfit. What a challenge. Sewing on paper is difficult, let alone trying to deal with teeny tiny seams! I used suede paper for the dress and coat. The design of the bear is copyrighted by ECBE. She's in the store as a 2 page layout, but can be special ordered as an embellishment. Doesn't she just steal your heart?

And So it Begins

So many people have told me I should write a book about my life experiences. I have laughed and told them it would be filed under fiction, because no one would believe anyone could live such a soap opera life. But yet here I am blogging and not sure where to begin.

I am a domestic violence SURVIVOR!!! It has been a journey that has taken so many twists and turns and it is not over yet. While my abuser is no longer physically hurting me, the emotional and financial games he continues to play with the children and myself are just as damaging. His being more than $10,000 behind in child support is only a small part of the pain he continues to inflict upon our family. I will never go back, but I can certainly understand why women do.

I am from the upper middle class, but as a result of the divorce my income is barely above the poverty line. When the marriage came to an end , we had just moved into our brand new 3,600 square foot dream home. Our bedroom had a sitting area that was large enough for my scrapbooking. I was in heaven! Now my scrapbook studio is actually my closet! LOL

I had begun scrapbooking the year before as a result of having a heart attack at the age of 40. The heart attack itself was the beginning of a painful and confusing medical journey, that has had so many twists and turns that there are times I am amazed I have maintained my sanity. I started scrapbooking because I wanted to make sure my children knew my story and how much I loved them. It has also turned out to be very therapeutic!

It is my intent for this blog to give a glimpse into my daily life as I have learned the skills to become a survivor of domestic violence, living with the incurable rare disease of Behchets, being a single of Mom of a disabled child and a gifted child, and how scrapbooking has made a difference in my life.