Saturday, March 17, 2012
People who share their true feelings, struggles and heartaches are truly courageous. That is something that I have a hard time doing, even to my family and friends. I wish I could be one of those people but I am who I am I guess I can try though. I don't ever know what I am so afraid of. Maybe if I voice my fears they will become real. or people will think less of me because of my silly fears and frustrations that seem huge to me. O have always suffered from anxiety and the smallest thing like talking to a store clerk can send me panicking. Plenty of people have advice on how to make this better or go away, but the reality is. I have tried everything to not be this way, I hate all the stress and anxiety that makes me feel insane. I would rather not be this way, but I am and I can't change that I just have to learn how to deal with it and I have learned to hide it pretty well. Now if only it would go away for good.
Thursday, March 1, 2012
My husband of four years has nephrotic syndrome. Whenever I tell anybody this they ask what is that? Well, it is when your kidney does not function correctly, instead of processing the protein it recieves to put back in your body so all your other major organs can function properly it releases it all in your urine. This can cause kidney failure and blood clots in any of your major organs and thus you can die. Not very many people know what it is and so I want to raise awareness about it. Since I only have 6 readers of my blog and I don't think any body reads this, I am going to try different venues. If anybody has any ideas, please feel free to let me know. When my husband was first diagnonsed the only solution was to put him on Steriods, which didn't fix the problem, it just covered it up and steriods create many more health issuses. So when we moved to Rochester and the doctors told us that if he continued to just use steroids he would need a kidney transplant within a year or two. We were quite freaked out, but they told us there was a new drug that had been used to treat a few others with this syndrome and it had a good prognosis, so we were all for it. He went in every month for four months to have it put in an IV and would spend the day at the hospital. I wasn't allowed to see him because he was on the floor were they treated cancer patients with radiation and I wouldn't be able to bring Eddison, my son, because of the harmful effects. So I had to wait nervously at home while they tried out this new drug intraveineously on my husband. Well, things worked out for the best and he is now off steriods and not showing any signs of protein in his urine yet and it has been six months. Hooray! But there is always the chance it will come back. I want to be able to change the world one step at a time and right now the biggest thing I would want to change is to create awareness and get more information and help with this syndrome so we can get it beat for forever. This drug that has helped him was new and had only been used in 3-4 other people with his syndrome. I want to be able to help doctors study this syndrome further and create new and even beetter medications to help treat this. I want to start a Nephrotic Sydrome foundation! I am looking into it right now, but if anyone else wants to join, let me know! Hopefully we can organize a chapter and do fundraisers and connect with others who have this illness as well and be able to help.