Wednesday, July 20, 2011

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Hero of the week

Every so often, I have the extreme honor of meeting women who simply astound me. The reasons are varied and multi-faceted. But always, ALWAYS, they are an inspiration, people who make me realize that there are genuine heroes in this world disguised as regular people, going quietly about their business, never suspecting that their very existence is a strength to those around them . I am honored to be able to introduce you to one such woman today.

If you follow me on twitter, you will have seen me talking to this woman just about every time I'm there. She is humble, unassuming, an unwavering cheerleader to everyone she meets. She never fails to be pleasant and courteous. I am, of course, talking about Dani, also known as @min_svart_ros . She blogs at My Corner of the Pond. Y'all go on over and show her some love in her comments, or tweet her a hug. She could use some.

The following paragraphs are copied and pasted directly from the document Dani sent me for a guest post. It is so moving, the tears were flowing freely as I read it. I hope it touches you as much as it did me. I have not edited the text in any way, save for spacing between paragraphs.

When my husband & I were married 17 years ago I never thought we would be faced with some of the trials we have faced. Sure we have had our marital issues, the usual fights and miss communications like everyone. However we have also faced our share of life issues.

My husband had a ruptured disk in his back early on in our marrage. They did two surgeries & he has been disabled for a little over 12 years. Recently he has gone back to school to get his BA. You think that would be enough but about 7 years ago, I started getting sick with seemingly unconnected vague health problems. Took me 2 years and saw seven doctors before I was diagnosed. After much testing I received, a phone call at work from the Dr. He told me I had a rare form of cancer. He went on to say he knew nothing about it & I should look it up. He said I had a 2.5cm Carcinoid Tumor in my lung it is a Neuroendocrine Cancer. I was floored that he was telling me this while I was at work over the phone.

The next few months were filled with appointments and I had surgery May 31, 2006. They took out the lower lobe of my right lung. Oct. of that same year I was back in having emergency gallbladder surgery. Shortly after, I was sick again & they were running more nuclear scans & tests on me. Dec. 23, 2006 I received a call after returning from a work Christmas party. The nurse on the phone was telling me I had to come into the hospital right away. My potassium was so low they were afraid I was going to go into cardiac arrest and my condition made it worse. WAIT... Hold on I said... My condition? The nurse went on to ask me “Didn’t you know you were pregnant?” Umm NO...

PA was born July 20, 2007. She was 5lb. 10oz. It was a very difficult pregnancy especially while I was still recovering from a thoracotomy. She was not your typical child & had many feeding issues as well as GI issues. She also was not hitting her milestones, as she should. At 18 months old, she had two grand-mall seizures and many other seizures after that. She stopped all development. She stopped eating, playing, had low muscle tone that made it difficult for her to walk. We had her assessed at 2 ½ and were told they did not want to diagnose her with Autism right then & gave us a PDD-NOS diagnosis. We are getting her reassessed to get the Autism diagnosis they did not want to give us because they said she was too young.

While I was dealing with my PA’s issues, I had become sick once again. I went through more testing and they told me my cancer had metastasized but they cannot find where it is. I have what they call Carcinoid Syndrome. A very debilitating illness is very hard to treat. My cancer is considered incurable and we now it is a waiting game. Right now, the tumors are too small for them to see. There is no way of telling how many there are either. The biggest drawback to this is traditional chemotherapy and radiation will not work for this cancer. It is truly complicated.

At this point, I am starting my fight with my insurance company to see one of three specialists in the country. Because this is so rare, only a few doctors are able to treat this effectively and my health plan does not have any specialist in plan. The three specialists are also, far from where I live so I have to travel there. If I can get my health ins. To send me I still have to get there & pay for lodging & food. Then there is the fact I have to take my 3 yr. old with me which is an added cost. This will take a while but I am a very determined person and I refuse to give up and need to be around for my husband and both my girls.

Wonder Woman image by Photobucket; frog and lilypad from Dani's blog

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