I went to a nerologist about my memory problems. He told me I was fine. I thought it was my electric shock therapy I had for my bipolar. It seemed at the time it that was very logical to me to think that.
Then on March 19, 2006 I had to be rushed to the hospital. My Mom fought with me for three hours. She finally said "you either go with me or I call the amblance." I went with her. Going down the steps I almost passed out. 
I couldn't breath but try to tell the doctors that. They left me three hours without oxygen. They kept on saying that I will be going home soon and all of a sudden after a cat scan all the monitors came on me and I finally after three hours got oxygen put on me. They told me I have h twouge blood clots in my lungs and I was not going home. Later on they found out I have two huge one in my right leg also.
Another doctor came in from my doctor's office and told me about a man who got too much blood thinners prescribed by the ER doctors and he had a brain bleed. Scary to think. My aunt told me a story of my Grandma not dying from her ovarian cancer but from a blood clot going straight to her heart. I was also told my uncle had blood clots in his leg. I was trying to remember what my aunt told me what it was to tell the doctor and it came out as "lupus like coogulation". They took a blood test before injecting me with the blood tinner. I'm glad they did because they cannot take one after you start the blood tinnner.
They later on told me I had Antiphospholipid Antibody Syndrome. Knowing me I always want all the information on all my illnesses so I looked it up. I bought a book that was a old book, not recent, and it said this is a rare illness. Later on I found out it wasn't and the book was that old. I found out it was a common illness but not all doctors knew about it. I was told by a blood specialist about what was going on. He told me I was lucky to be alive because over 50% of people die from blood clots in the lungs. I read in the same book and found out my memory problem I was having ment that I had a blood clot starting in the brain. I am so lucky to be alive. Then my frustration began.
I went to ER for a illness I got often becaue of my asthma and my iron deficency anemia (the anemia was cause by the blood tinners). The doctor came in and didn't know what my illness was. It is a horrible feeling to teach a doctor something that they should know. It feels like if they don't know this common disease how can her help me? Scary.
I had one time I had a sinus infection, not uncommon for me, but since she didn't know this disease she said I know what you have but I don't know what to give you. I COULD GIVE HER A LIST OF ANTIBIOTICS THAT I COULD TAKE!! STUPID!!! So I went to my doctor. Two doctors, two visits and one visit wasted on my insurance and time I spend that I could be doing something else.
The latest one is going to shock you. I had a conflict with a doctor. He asked me what I'm on the blood thinners for. I told him why. He acted like he knew what it was but I know that look by now. I rather teach someone about this disease that some hard headed man who is too inflexible to learn. He goes if I have to give you a antibotic that might be hard. I said "I can give you a list that I have been on." He asks me if I was a doctor. I told him proudly I had a CNA (Certified Nursing Assistance) degree and a CMA (Certified Medical Assistance) degree. He walked out of the room. At that time I was teed.
THREE RULES TO LIVE BY FOR PEOPLE WHO HAVE CHRONIC ILLNESSES COMMON OR RARE :
1. Learn eveything you can about your chronic illness. The more you know the better you are.
2. Self-advocate for yourself - if the doctor or nurse or anyone else don't know teach them!
3. If you come by a doctor that is so rude or did something wrong
that makes you angery - go above there heads!! Talk to there boss if you don't get no help
talk to that bosses boss and so on until you get the satifaction this will be taken care of.
RULES FOR EVERY DAY LIVING
1. Take time to cool down and relax each day. I like to play video games. Blowing somthing up
makes me feel good.
2. Take some time for yourself - if you have to pick a day - put it on your calander if you have
to!
3. Journal - it is a good way to vent and you feel better afterwards!
4. Remember you are not super man/woman - you can't do everything in one day - don't push
yourself!
5. Meditate/pray - I am a christian and I love to pray. It is my favorite parts of my day!
6. Love yourself for who you are right now!
7. Live life one day at a time! Worrying never helps anything!
8.Live each day like it is your last because you never know when it is your last day on earth!
