my struggle with prednisone

I have been debating whether or not to post this because of the nature of the topic, but this is my only form of a journal right now and I feel like I need it documented. So here goes.

My health has been on my mind a lot lately. My current state and the future. I am tired of dealing with ITP, though I know it's probably something that I am going to have to deal with indefinitely.

I have been on a medicine called prednisone for some time now, and though it is effective  the side effects are not good. I have been contemplating trying new treatments. But they are more extreme than just taking a couple pills everyday. And that scares me.

Prednisone does what it is supposed to do. It tricks my body into thinking it is some foreign substance and attacks the medicine instead of my platelets. As a result, my platelets increase. That is always a good thing. And for me, the higher the better!

I have been on Prednisone before in high school. I know the side effects all too well. As soon as I was put on it, I started bracing myself for them. This time though I feel like the side effects have magnified. In short, it's not fun.

Prednisone makes your face puffy. I don't know if it's water retention or what, but I feel like a chipmunk. The technical term is called moon face. My cheekbones? What little definition I had, have disappeared. I feel like it took years for the puffiness go down after I was off of it the first time. I am dreading the fact that it may take just as long on the second go-around.

Prednisone makes you constantly hungry. All. The. Time. Thankfully I haven't gained too much weight from this. A lot of people, who don't know the side effects, are taken off guard and as a result gain 20+ pounds. Some people say that you gain weight on Prednisone simply by breathing, which I totally get. I don't know what it is. You just blow up like a balloon. It also makes you break out and my hair has thinned somewhat and has gotten stringy... All side effects.

Prednisone also messes with your mind. My husband is a champ for dealing with me on this part. You become moody and irritable (Sorry Scotty). Thankfully this hasn't affect me too much, though I do notice it from time to time.One thing though that has taken its toll on me is the ability I have to focus and to remember things. I feel like I am constantly asking for reminders or it takes me a little bit longer to go through an email. I also seem to zone out mid conversation with people.

I am constantly tired. Like I can't even function tired. I know it's a combo of the medicine and the platelet fluctuation, but it's still not fun. I don't get anything done. Sometimes I'll get home from work and just sleep. Seriously Scott's a champ for putting up with me and never complaining.

This time around I've notice another side affect that I didn't have before. My hands sometimes get super shaky and weak. Like I try and hold still and I just physically can't be still. You know, like how elderly people get? That's the best way I can't describe it. My hands sometimes just shake.

Sounds awesome doesn't it? I know you're thinking, "sign me up" right about now.

So you can see why I want to get off this medication. The problem is, my platelets seem to fall just as soon as I stop taking it. So the doctor wean's me off of it ... my platelets go down ... and then they put me back on. It's a viscous cycle.

Like I said, though, the next options might be more drastic. I think I am almost there, but it's still scary thinking about the choices in front of me. Not to mention the insurance and money factor being calculated into it.

Anyway, I really don't know the point of this post, except documentation. We are just trying to figure out the next step ... one that hopefully will be a long-term solution.

Hospital Stay, Mint Jeans and Instagrams To Prove

Can life get any crazier? Seriously. I never thought my first six weeks of marriage would be like how they've turned out to be. Don't be mistaken I am happy! It's what has happened to me from the outside (or I guess I should say inside) that I could do without.

Remember how my platelets got dangerously low? It gets even crazier.

Let's start with Easter weekend why don't we?

Scott and I drove down Friday evening to meet up with his family for a quick getaway in St. George, Utah. It's warm down there and apparently the place to be for spring break. Saturday was so much fun. We spent it in the the sand dunes playing games and then at the pool!

Late Saturday night, early Easter morning, I woke up with the most excruciating pain I have ever had!! It was sharp pains on my left side that felt like my ribs had been broken and were poking inward. After a few hours of tossing and turning ... not to mention I was in tears and could barely breathe ... Scotty finally was like We're going to the hospital. I was a little hesitant to agree because I am the "new" one in the family and I didn't want to be a drama queen. Especially on a holiday! I am so glad we went though. They found several small blood clots in my lungs. It was definitely something I never thought I would hear and I was scared. I mean people can die from them. I was so grateful to have Scotty there with me, though I think I've given him enough to worry about lately.

They kept me overnight. I have never stayed in a hospital overnight. My mother-in-law was so sweet and stayed with me while everyone else headed home. I was surprisingly discharged the next afternoon. I was in no condition to drive the four hours back home so my parents (who are saints and drove all night from Washington) got a hotel and we drove back on Tuesday.

So that's how I spent my Easter Sunday. Pretty crazy and very scary but I am grateful we went into the hospital, for modern medicine ... and pain killers (wow those things are strong).

The rest of the week I spent recovering with my parents while Scott was at work. I even ventured out to go on a walk and go shopping on Thursday. I felt like (and probably looked more so) a sickly person but it was good for the soul to get out.

On Saturday we met up with all my family at City Creek in Salt Lake City. It's always a good time with my family. Not to mention I got stopped six times by people asking me where I got my mint colored jeans (Urban Outfitters). I have been begging Scotty for MONTHS to get some and they finally came in the mail. I'm a wee bit excited!

So thanks to those six people ... you sure made a girl who felt like a walking disaster feel pretty good about herself. Even if it is on the superficial level ... Give me a break I had a rough week.

Thankfully the pain from the blood clots gradually lessened throughout the week. Now the pain is nearly gone. I just get worn out easily. I am thinking hoping now things will start settling down now!

Back to Life and ITP

WARNING: This post ended up being longer than I originally planned. And this is not a post for those sensitive to medical subjects ... eh hem ... Yaya.

I am gonna take a break from wedding posts for a second. I know. I know. You're a little surprised. But really, my life doesn't just revolve entirely around that.

My life now consists of getting back into a routine. My new routine. It's been a little challenging though. I had a bit of a medical scare the week after we got back from out Honeymoon. Talk about timing.

In junior high and high school I dealt with an auto immune disease called ITP (Idiopathic Thrombocytopenic Purpura if you wanna get technical). In essence it is a low platelet count and they don't know what causes it. As a result I would bruise a lot. It's just something that thankfully I was able to go about my normal life and not have it affect me too much. Eventually my platelet levels plateaued at a safe range (what I call my normal) and I eventually lost contact with my doctor/specialist in Washington.

The weeks leading up to the wedding I noticed bruises pop up on my body and not know where they came from. Not having time to worry about it I just brushed it off. I was also beyond EXHAUSTED! But I just attributed it to stress and my busy life. I also kept getting nose bleeds that I couldn't stop either. Living in the high altitude and desert, though, it's nothing too out of the ordinary. At least for me. I was just so busy I didn't really think much of it.

On our honeymoon I knew something was wrong when I went to take off my sandals to walk on the beach and there was a bruise on the top of my foot that was the size of the circumference of a tennis ball. I mean anyone would remember dropping something on the top of their foot. After we got back from California I kept feeling that something wasn't right. A huge bruise showed up on my forearm and it finally scared me enough to do something about it.

After work on Tuesday I finally drug myself into the urgent care to get my blood drawn. Sure enough. My platelets were dangerously low! Like 18,000 low. I don't remember them ever being that low. The urgent care doctor made some phone calls and got me in contact with a hematologist and made an appointment with me for the next morning. They told me to go home and not to anything!

I went to the doctor the next morning. She drew some blood and my platelets were even lower! They were 8,000. I got pretty scared at that point. I knew I was pretty much a walking disaster and she was ready to admit me to the hospital right then and there. She immediately put me on an IV (IVIG). I sat there the entire afternoon. At that point I still didn't know if they were going to keep me overnight. Thankfully my levels went up a little and they let me go for the evening, but I had to go back for two more days worth of the IV. Before I left that night the doctor gave me strict instructions, "Do not get in a car accident and do not do anything stupid!"

 My awesome view for 3 afternoons. 

Excuse me doctor can I get this in my IV instead? ... Jokes.

It was pretty boring getting the IV. I slept a lot, read magazines and played on my iPhone. By Friday afternoon my platelets were back to my normal range (85,000) and by Monday they were back into a normal person's range! And still are!!!! What a difference it has made though. It seems like overnight I have had so much more energy than I can remember having in a long time!

I am still being watched closely by my doctor, but I am grateful to be in good hands.

Speaking of good hands...

 Walk of Fame on our Honeymoon.

I just love this boy! I can't tell you enough how good Scotty has been through this whole thing. To me this situation is second nature. He knew about my ITP before we got married, but this is the first time he has had to go through this with me. He is so good to me and has taken this situation in stride.

I am hoping now that my platelets are under control I can finally focus on real life ... start running again and getting caught up on Khloe and Lamar (priorities people).