Today January 7, 2010 marks my 1 year annivesary of when kidney failure began. Since last year life has changed in so many ways. Some good and some terrible. Today is a spooky day because I am thinking back to how I felt last year and wondering how I made it through. Well, I know that answer. God. That is why I am still here. I pray all of the time to please let me see my daughter grow up. I know he won't let me down!
HUS, PD, clinic, renal diet, phosphorus binders, blood pressure, doctors visits, shots, labs, fluid restriction, pills, pills and more pills are now, just a way of life. Almost cant imagine life before.....well yes I can. And I know someday I will live that life again!
Since aHus became an unwelcomed member of my life, lots of good things have happened. First of all I have become closer to God. He has always been in my life but now I lean on him more than ever. I am reassureed everyday of my life how lucky I am to have Chris as my husband. He really spoils me. He helps carry all of my PD solution at night and sets my machine up for me. All I have to do is connect. Sure, I can do it myself, but there is something about him doing it that makes me feel more normal....I dont know why? I love him so much. I also appreciate Madeline more than ever. I try to soak up as much of her love as I can. And try even harder to be the best mom I can be. She is my rock. I have realized what a lucky and blessed girl I am to work for Sensational Kids. They have stood beside me every second of this year. I could not ask for better collegues. My family has been very supportive in so many ways...too many to list because I will leave someone out on accident.....and we know how that goes! LOL!!!! I have an amazing network of friends and family who took me to dialysis every single time I had to do hemo. I never sat alone in that chair. I have a loving church family and more friends than one person deserves. People from all over have reached out to help me and my family. I have met others with HUS and have developed some special friendships with them. I wish we could have met under different circumstances, but I love them and they are wonderful people. My sweet girl started Pre K, ballet and tap this year. She is growing up too fast. We got another dachshund to add to the family, Mr. Gus. Gracie and Gabbie have adjusted well. I have one sibling named Matt. We have become very close this year. We were close before, but we have a bond now that I dont think I would trade for a kidney. He is donating his kidney to me if they ever figure out a way to do it with me and my HUS situation. He always makes me laugh and is always there for me. Kidney or no kidney he will always be one of my heros. The other hero in my life is Chris. He has had to do things for me, that no husband should ever be required to do. He made sure I was getting good medical care when I couldn't help myself and has taken great care of Madeline when I was sick. He is a wonderful husband, father and best friend.
Chris and I ended 2009, which I was glad to see end, by making the long trip to the Mayo Clinic. We learned alot about my HUS and possibilities for the future. We made a vacation out of it too. We spent a few days in Chicago where he surprised me with tickets to the Joffrey Ballet to see the Nutcracker. We went to art museums and galleries in Chicago. Once we made it to MN, we went to see the bodies exhibit, Mall of America snd we went ice skating.....(bad idea with low platelets....but still fun!!!)
Just reflecting back on 2009 brings back bad memories but I think my good memories totally outweigh the bad. I am so thankful to Barnes Jewish hospital in STL, who saved my life.....twice. Anyway, I pray 2010 has even more positive memories and that medicine and science makes some breakthoughs in aHUS. God Bless