We were watching one of my favorite movies tonight, Julie & Julia and it inspired me to pour my soul out. Sorry this is such a long post but I was given good advise once from a blogger to just be yourself so here I am. They were both themselves, real and I want my blog to be real. Not what, “most women” or the, “average person” deals with but what I have dealt with throughout my life.
What came first the chicken or the egg (I laugh at this because I’m allergic to both!)
As you know I have Celiac’s and it’s effects are too many to count. What you don’t know is that I also have Endometriosis and PCOS (Polycystic Ovary Syndrome) which are all auto-immune diseases. So I ask myself which one came first?
Growing up, the youngest of four children, we had a normal life on a farm (apricot orchards) in California. We moved around a lot but the years on the farm are the most memorable for my immune system. Especially because I was always sick with strep throat that would last for months. Ok not a big deal. They also sprayed pesticides around our house at least once a week in the early 80′s and they were still using really bad ones. (not like there are good ones!) These were my pre-teen years which makes me question did the pesticides cause the Endo and then later to follow the PCOS? Or was it the Celiac’s that made me prone to getting Endo and PCOS? From my very first period, which by the way needed help to start at 15 1/2, was horrible! I remember the pain, screaming to my mom just to make it stop! She rushed me to the doctor and he gave me my first of many ultrasounds and said a cyst burst. She will be fine he said and I wanted to strangle him. She will be fine! Well after that everything was not fine. The pain was horrible with every period. I went to doctors after doctors and finally the last one said it was all in my head and to stop asking for pain killers. After one emergency room visit one doctor suspected Endo and the next day I went in for surgery. When my surgeon came out he said he had never seen a case that bad! Finally someone believed me. I wasn’t crazy!
I started researching everything about Endo I could get my hands on. Western and Eastern medicine. For Western, my choices were the pill, forced menopause or hysterectomy. For Eastern there were many including of course diet, exercise, message, acupuncture and a long list of other things. I made a list and tried everything. I am a big believer in natural remedies as much as possible to heal your body but I was desperate to stop the pain. Some things worked, like diet. That’s when I found out about going gluten free. Again my doctor looked at me, just looked at me and said you don’t have that! I thought scientists used tests to determine if you have a disease and not just looking at a person. Fired that doctor and found a good one that works with food allergies. What a box I was about to open, I had no idea!
It’s strange to think that I have spent the last 20 1/2 years in chronic pain. The PCOS started about five years ago and causes extreme pain throughout the entire month. My last surgery my surgeon said he tried to stick a needle in my ovary and it bounced back. He wasn’t kidding. They were so full a needle couldn’t even get through.
This brings me to my latest decision, total hysterectomy. Complete, ovaries, cervix, uterus and fallopian tubes. This has taken many years to come to this decision. If you just look at me I don’t look sick, or in pain its really quite the opposite I look pretty healthy. I don’t even like to talk about it with my friends but it’s so hard to live in pain everyday that I was ready for it to stop. I can’t imagine a life without pain and pain killers. It was a big step, especially because we really wanted children, but my husband and I were ready to take that step.
We found a wonderful surgeon, Dr. Camran Nezhat. He asked me if I had tried everything because there is no going back from this and I said yes with confidence. This was it. The surgery went well at O’Connor Surgery Center. When I woke up I was so glad it was over. When they took the catheter out it was hard to pee and I was in pain when they sent me home. When we go home the pain was so bad we went to Stanford’s emergency dept where they admitted me. As soon as the put the catheter back in I had instant relief! I was admitted Thursday night and left Saturday afternoon. Pain was managed, I could eat solid food and could pee!!!!! Stanford was actually pretty good with all of my food allergies. I gave them my allergy list was surprised when they brought me more than just fruit! That’s a first for me in any hospital.
They say 6-8 weeks recovery and I’m well on my way! It was last Saturday I was released and today we went to the Japanese Tea Gardens in San Jose. It’s amazing what one week will do!
I’m curious to see if my food allergies improve as I get healthier. We have a trip to Mexico planned this summer and to think that it will be pain free makes me cry:)
Thank you to my hubby, who sees me at my very worst and still thinks I’m beautiful. Thank you to my family and friends who always have a party in the waiting room during my surgeries (hope this is the last!) and who make us food and do all the things we can’t. We love you all so much! And a special thanks to my doctor, you are a very kind and skilled surgeon.
I would love to hear your stories if you would like to share them:)