Today (and yesterday) has just been one of those bad days that make me want to scream Why Me at the top of my lungs. Not that I would wish being in constant pain on anyone else, but why does there have to be so much pain and suffering in the world anyways. I know that it is not in my hands and I just need to trust the One who knows all, but why do kids have to get horrible diseases? Why did so many people lose their homes and families in Haiti? I know that compared to what so many people deal with my life is a piece of cake, but that doesn't make days like today any more bearable. I have had a few people ask me what exactly is wrong with me without knowing what a loaded question that is. I decided to blog about it because a) I thought writing it out might make me feel just a little bit better tonight, b) I started writing this at 4:00 in the morning because I hurt to much to sleep and needed something to fill the time, and c) this way you have to option of if you want to read it or not!
The biggest issue right now is horrible stomach pain on my right side, under my ribcage. How bad it is changes day to day, but on it's worst days I can't keep anything down and end up in the ER needing to get IV fluids and pain/naseau meds since I can't even keep any of them down. Sometimes I have to stay for a night (or 7) before we can get things under control again. There really is no certain diagnosis, but the doctors think it is a condition called Spincter of Oddi dysfunction. I have had 3 surgeries that helped for about a week each but then things went right back to how they were. Best guess as to why the surgeries don't work like they should is due to problem number 2; Ehlers Danlos Syndrome.
EDS is a connective tissue disorder that, for me at least, just means that I can sprain something if I even think about moving the wrong way. It also means that my muscles, ligaments, and tendons are too streched out to support my joints like they should. After 3 years of intensive physical therapy that did nothing to help me out I gave up. In addition to problems with my connective tissues I have joint pain from fibromyalgia and arthritis in my hips.
Thankfully a few of the things that have caused me tons of problems in the past have either resolved or are much better. I used to get horrible coughing attacks , brought on by playing sports or any kind of upper respiratory illness, where I would literally cough for 24-48 hours straight. I could not stop long enough to do more than take a quick breath and maybe a sip of water. Not long enough to relax at all, let alone get any sleep. Finally after years of dealing with it, we found a treatment that worked. The last of the major ones (have I bored you to death yet?) is Polycystic Ovarian Syndrome. When I got the pain from my first cyst at 13, we were sure that it had to be my appendix. After a series of traumatic tests and procedures (I hadn't ever seen a gynecologist before) the childrens hospital told us that they couldn't treat me and had to transfer me to another hospital for surgery. For the next 9 years I got cysts once or twice a year until I convinced a doctor to remove the offending ovary since I had never had a cyst on the left one.
Well it seems like maybe this actually helped a little, that or the pain meds are finally doing their job, and I think I might be able to get a little bit of sleep. In a few short hours my wonderful husband and I are on our way to Madison, WI to see one more performance of Rent the Broadway Tour!
Friday, January 22, 2010
Last Friday the 3 of us went to see Sesame Street Live and had a blast! We had incredible seats thanks to a great Christmas present from my Mother and Father in law. The second the show started Madison screamed abby, ABBY, ABBY! She loved seeing all of her favorite characters dancing around, especially when they actually came off of the stage and danced in the aisles. She was so upset when intermission came that we were willing to do almost anything to calm her down so I asked Zach to go get one of the Elmo balloons that they were selling up by the stage. I almost fell off my chair when he told me it was $10.00. Ten freaking dollars for a balloon are you kidding me?!? But I guess it was worth it to see her beautiful smile. Well I learned from intermission and when I could tell the show was almost over I started to tell her that it was almost time for Abby and Elmo to take their naps. Crisis averted...whew.
Monday Madison had speech therapy and her amazing speech therapist can't believe the progress she has made in the past weeks. She is still going the come out a few times more just to make sure, but says that Madison is completely caught up to where she should be. I knew she was doing so much better but never imagined she would catch up so quickly.
Thursday she had an appointment to get another set of tubes put in her ears and to have her adenoids removed. I was more nervous than I would like to admit. Mommy and Daddy both got to go back to the OR with her while they put her to sleep which made it much easier on all of us. She did great and we were back with her before too long. While we were in the short stay unit I just crawled up in the bed and had her lay on me. After some juice and a popsicle and a dose of the medicine that she would be going home with we were told to pack our stuff and head on home. After a nice family nap we had a quiet night watching movies and eating popsicles. Other than being a little clumsy from the Tylenol with codeine she is back to her normal, sweet self.
Posted by Elizabeth at 1:02 PM
Friday, January 15, 2010
I thought I would join in on some of the blog hop action so here it is: Five Question Friday created by Mama M (http://fivecrookedhalos.blogspot.com/) The idea is that you copy and paste the questions to your own blog, answer them, and link up to all of the other posts. Sounds easy so I guess I will see how easy it is when I try to link up using MckLinky. I hope you enjoy getting to know me a little bit better.
1. Worst trouble you ever got into as a teenager? I know I am going to come across as a big goody two shoes here, but I honestly didn't get into any major trouble. I guess it would have to be for either coming in a little late for curfew (I had EVERY excuse in the book for why I would be a few minutes late...oops) or for talking back to my parents (my mouth has always gotten me in more trouble then I would like to admit).
2. Are you a morning person or a night person? No question a night person. I do not like to get up early at all. However my idea of sleeping in has drastically changed since having Madison. These days sleeping in until 9:30 is a major indulgence.
3. Are you a one-handed or a two-handed Texter? One handed
4. Democrat, Republican, or Independent..or maybe even Green Party (whatever that is). I can't honestly say that I know for sure what I am. I have my own personal beliefs on the major issues but in some cases am more conservative and in other cases am more liberal.
5. Are you a pet person? Big fat yes! I love pets and have always had them. We have a few at our house and if it was up to me we would have a ton more. We have 2 cats, 2 bunnies, and a tank of fish. I would love to get a dog, but our landlords have had some bad experiences so we are not allowed. But let me tell you, as soon as we are in a place where we can have them we will be getting a dog or 2!
Posted by Elizabeth at 7:31 PM
Thursday, January 14, 2010
I decided it was probably time for my blogging hiatus to end. I always have such good intentions to blog many nights, but it never seems to happen. I guess I waste so much time trying to think of something interesting to post that I never actually get the post done. So my (late) New Years resolution is to be a better blogger, and by that I mean to post more frequently and to try and post more than just what we have done that day. So if anyone has suggestions or anything you are dying to know about me feel to let me know.
We had a wonderful Christmas together. We spent time this year thinking about what traditions we wanted to start as a family now that Madison is getting older. We spent a night decorating our tree together, made and decorated cookies for Santa, and let her open one present on Christmas Eve. We decided to get her a new pair of Christmas Jammies every year that she will be able to open the night before to wear to bed. Christmas Eve was really relaxed and we just hung around the house with my mom and dad and took it easy. Christmas morning we got up and opened our stockings as soon as little miss woke up and also showed her new playhouse downstairs since that was a little bit too big to take to Uncle Chris' apartment. I even took a short nap before getting ready to leave and it was wonderful! Once we got to his apartment we had dinner, opened gifts, decorated a few cookies that we saved to great gramma and uncle Chris could join in, and played with all of Madison's fun new stuff. The next day we were supposed to go celebrate with my dad's family but had a very unhappy little girl who wasn't feeling good. So I stayed home with her so that we could go get her ears looked at. 2 hours and an antibiotic later we were home. We still can not get these annoying ear infections to go away, but thats a whole nother post. Meanwhile here are a few pictures from Christmas.
Hope you all had a wonderful Christmas. Good Night!
Posted by Elizabeth at 9:59 PM