Saturday, March 17, 2012

Making something out of nothing

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

Nephrotic Syndrome

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.

Wednesday, February 29, 2012

New York City

Times Square in New York City. We had an eight hour layover in JFK so decided to go to the city, thinking this would be plenty of time. Well, it took us a $25 dollar taxi cab ride that was the scariest experience of my life, there was no AC and it was 100 degrees outside and it took an hour to get there. We got there feeling sick and hungry, we spent another $25 dollars to but lunch at a chipotle. We have that same olace here and it never costs over $15 dollars at our local Chipotle here in Rochester, New York. Talk about inflation! The salad I got was tiny and gross, not at all like I expected. They didn't have any water or juice, just soda or beer, which I didn't want. So we didn't get a drink even. There was no where to sit so we stood by the door and ate our food. After that we walked through Times Square and the train station, which was cool. We were going to go on a bus tour and bought tickets and the guy told us we had to walk somewhere to get on a bus. We couldn't find the place and we were getting tired of walking. It was summer so it was hot, stinky, noisy and tons of people swarming us. Adding in we had a three year old, no idea where we were going and no food or water and a horrible lunch. Well, we decided just to go back to the airport since we were having a horrible time and wanted to make sure we got bak in time to make our flight. So we go back to the exact same place we bought our tickets for the tour to get a refund and the guy says he can't give it to us because he wasn't the one who sold them to us, we would have to find that same guy. So we explained to him that we were leaving right then and couldn't do that so he says we can send our tickets in and explain our situation to some place and maybe we would get a refund. We paid $85 dollars for this bus tour. So after getting frustrated by that we go stand at the taxi pick up place to get a taxi back to the airport. Well we tried getting in 5 different taxis and when we told them we were going to the airport every one said no, they wouldn't take us to the airport. So by this time I am about to cry with frustration, thinking we have no way to get back to the airport, we are stranded here and will miss our flight. Finally, a taxi driver says he will take us and it is the same thing $25 dollars, on hour drive with no A/C and crazy, I think I am going to die driving. At least Eddison fell asleep and so I spent my time trying to hold his head to keep him from getting whiplash and closing my eyes. So lesson learned. Don't ever go to New YorK City unless you have a plan and know what you are doing. I don't think I ever want to go back. It was horrible. I have been to other big cities and loved them. Chicago, San Fransisco, they were amazing, but NYC was too much for me.

Tuesday, February 28, 2012


This was created by photots taken of different things around rochester! My favorite part is Lincoln's reflection in the picture. His Heart is on fire for Me! ;)

I think I will become a blogger...

So when I started this it was just to see what the latest rage was about, everybody was doing it and it gave me a chance to share photos with my family, but now all of my family is on facebook, so this fell by the wayside for me. My old computer was too slow to ever upload anything and I felt like my life was too boring to really have anything to share anyways. Well, I fell like we create our own happiness and I still don't have an exciting life, but I do alot. I Have so many hobbies and things I want to do every day I don't know where to start. Blogging is on of them. I want to become one of those cool bloggers that have lots of cool stuff on their blog that are interesting to read, so I will create it. My new thing is also pinterest and I re-create so many of the recipes and crafts I find on there, I love it! So if you have things you want to hear aboiut please say so, I might not be an expert on everything, but I am very knowledgeable about cleaning, cooking, raising a son, being a good wife, friend and employee. I love to write, and read books, do anything crafty, paint, draw, sew, coupon and I love animals and the outdoors. I love photography and fashion. I know a lot of awesome beauty tricks since I am a regular women and have to spend time to make myself look beautiful. Help me create an awesome blog by taking a peeka and commenting! Thanks Ya'll! :)

Monday, January 23, 2012

Our Christmas tree, Eddison playing digital dodgeball and A monster I made

A New Year!

So, It has been forever since I posted anything, I have been really bad, but I have lots of other things to do! Be a mommy, wife, homemaker, and I work part-time! Its a good life though. I love my family, my work and my neighbors. I have begun a lot of new hobbies also that keep me busy #1 is couponing. I love it! It is so fun to use my amazing organizing skills to do this and we save a lot of money! One of the best websites for couponing is couponmom. Target is also awesome because they have coupons on their website that you can print off, coupons that can be instant messaged to your phone and you can match those to newspaper coupons. I get coupons from my neighbors, so I don't even spend any money to get coupons, the only thing is ink for my printer to print coupons off. #2 Is knitting, I knitted a bunch of mini monsters for all my nieces and nephews for Christmas. They didn't turn out as amazing as I thought they would, but they were still cute. I am also reading a book a week, trying to write in my journal as much as possible and typing up my old journal on the computer. Add all this to my already long list of cleaning organizing, cooking and planning activities for work, not to mention playing and taking care of Eddison and working. I keep pretty busy, but I want to do more! I am not a super mom, but am trying to be. I love being productive. This year I want to start exercising more, Go back to school and do more crafting! If anyone has any tips on how to make all this possible, please send them my way. I also discovered Pininterest and love it! It has so many good ideas of things I want to try and do! If anyone is interested in getting an invite, let me know! Anyways, I will leave off with a few pictures of our recent activities, enjoy!