Saturday, February 23, 2013

curves, swerves, and milestones.

Hey everyone... I have been a bad blog mommy. It has been way too long and it's because I'm back in school and the last few weeks most of my free time has been studying for my A&P exam, practical and writing a lab report. This weekend I need to do some reviewing but I can't make myself pick my book up yet.
Hubs was organizing and getting some of the taxes done earlier today and I had to give him all the miles I had driven for medical reasons. As I was going through the list, todays date from last year popped up and it was the day I had my last Remicade infusion!! It wasn't supposed to be my last but after the debacle the new hospital put me through and how long it took I never rescheduled the one more I should have gotten before I had my colectomy. I survived, even though I took a chance that my flare would get worse and cause issues going into surgery. I just couldn't bring myself to go back another time and pump myself full of chemicals that weren't even doing their job. Not to mention the pneumonia I was fighting (not fighting) to no avail because I had zero immune system from the Remi. Choosing to skip that last infusion was a toss up for me because it meant chancing my flare getting worse, but on the flip side, prolonging my pneumonia and possible postponing my surgery because I couldn't get better. So I decided to give my immune system a go when by March, I still had pneumonia from the end of January and had been on roughly four rounds of antibiotic and two steroid shots. I could not get rid of it and as April approached I was getting really nervous that my colectomy would have to be rescheduled because I couldn't fight stupid pneumonia.
It all worked out in the end after a few more rounds of antibiotic, another steroid shot, a set of chest x rays and two CT scans. I'm pretty sure the outcome would have been different had I bombarded my body with more Remi at the end of April.
Needless to say, I haven't been sick since. Stuffed up a few days here and there but not sick! Finally... after constantly being rundown, feverish, achy, and coughing for a year at a time, I've got nothing even close. AMAZING!! So, I felt the need to write a little something commemorating this first milestone of a few more that will come this year.
School has been crazy, trying to handle it the best I can with everything else that goes on day to day. Every day there's something with kids...there are days I have to choose what to make a priority and obviously it's my kids. I'm not too happy with my first test score but I made the class average so I guess it could be worse. A lot worse.
My 18 month old is basically out of control. Everyday I think she's going to bounce her way out of her crib a la Tigger. It's nuts. No sitting still. Unless she's asleep. And she really doesn't like me studying. She prefers to take my pens and pencils and attempt to make graffiti on my $180 lab book. AWESOME.
Oh and I'm blonde again. So many exciting things. My head's swimming with all the activity around here. =)
I'm really excited that the girls and I are heading to Florida for a few days over spring break.  Daytona bound! Whenever I go back it's like I go home a bit. I loved living down there. I had the best time. I miss the beach. I miss the salt air. I can't wait. It'll be nice. My sister will be going down too and I'll get to meet my little niece. Can't wait. I have roughly two weeks to get my body bikini ready... totally possible, right??!! Right..... ;-) Ok good. I'll start on that tomorrow. Or maybe Monday. We'll see. I don't know. Maybe some self tanner will hide everything. Kinda like photoshop. Sounds perfect.
My oldest turns 8 a week from today. I can't even believe it. Too much to process. An 8 year old. Holy crap. How am I old enough to have an 8 year old??? No birthday plans yet because school has been consuming my life, but as the song says... "Life throws you curves. You learn to swerve". Thanks, Rascal Flatts. That sums up the last few years perfectly.
Have a great weekend everyone. Thanks for reading. XO

Thursday, February 7, 2013

Nonstop, little sleep, lots of meds, repeat.

It has been some time!!! Sorry it's been so long... Following my last blog post I was miserable and dealing with some JPouch issues and was in the worst mood for a few days and then life got in the way. I saw my surgeon last week and was basically a wreck. I wasn't sleeping because my skin was so raw and was weeping. NOTHING I did was working. The pain and the spasms kept me up or woke me up multiple times per night. I had lost a very small amount of blood a few times, and after everything I've been through, one drop and I am in an internal panic. I was near a breaking point from exhaustion. My surgeon comes in the room and I just started crying. He didn't know what to do. I launched into my tirade about my misery and exhaustion and just kept crying. He looks at me after I stopped for a second, and says, "Lisa, I don't know how to handle this with you. You are one of the strongest people I have ever treated, with one of the worst cases of UC, and you always have humor and a joke. I can't handle this side of you. I'm going to fix it". Well, naturally that made me cry harder and then lucky me....... I got to have an internal exam. It was my lucky day. Whoop whoop. Once again I will reiterate, I have no shame, dignity or modesty left... LONG GONE!!
So, he prescribes me Valium, more Flexeril(yeah, who knew digestive diseases would get you the good stuff), lidocaine gel(use your imagination) and a topical cream. I'm seriously a walking pharmacy. Want to know how often I fill prescriptions? They don't even glance at my license for a controlled substance anymore because THEY KNOW ME. Crazy. But I digress....
I felt better after leaving the office because my surgeon is great. He will listen, and keep trying to fix whatever the problem is. So many doctors dismiss their patients and are arrogant. I get none of that with mine and it's wonderful.
In the meantime I started classes and it is kicking my ass. A lot of work. A lot of material. It's scary. I am having my moments of being overwhelmed especially when my 18 month old is going nuts, tearing through the house and I'm trying to study tissues samples!! Yikes. No bueno. On top of it, my sleep is very broken which makes the mornings feel like torture. I'm trying to adjust. One thing that is so awesome that most will find weird is that Hubs installed a retro fit Bidet on our master bathroom toilet. OMG seriously, it is amazing!! Everyone should have one. Seriously. Go Bidet. It has changed my life now that I have a JPouch and the skin issues that go along with it as I've explained before.
Anyway- that's been my big exciting news. So great.
Oh, another awesome thing is I am going to be a guest blogger for http://thegreatbowelmovement.org/. I am so excited. They are a great little thing with awesome Tshirts like the one I have that says, "Ask me about my Ostomy". Awareness, awareness and conversation. So important to us IBD activists. As soon as it's up and posted I will link it! So cool.
It's things like that that make me so happy I started blogging.


Well, I am going back to some studying before bed. Test on Monday and I never maximize my weekend as much as I'd like. Have a great night everyone. Thanks for reading. XO