Tuesday, December 21, 2010

Doin' my happy dance!

After a ridiculously looooong, long morning up at the OU hospital (and getting up at an insane hour, bleh!) I am back home and sharing my happy news with everybody.

But before I get to that, I'll tell you first that the appointment was my best one yet. Kidney function was even better than last time, had a few levels that were still a little low but nothing major or difficult to fix. (I just need to eat more... go figure)

Bad news, I still need to be on the bloodthinner shots that are really painful because there's still some concern about the blood clot and the risk of having more clots in places like one of my kidney's veins that would ruin it and I'd end up back on dialysis. Obviously, I don't want that to happen so, after a bit of a break from the shots, I'll probably start back on that tonight. But me and my mom are going to try something different and, I hope, be able to find a way to make them less painful. I think I only have to be on them for about a month, maybe a little longer.

Ok, good news (Drum roll please!) I don't have to wear a face mask anymore! :-D My doctor said that my white blood cells were high enough to fight off infections and colds so as long as I keep my distance from coughing/sniffling people, wash my hands frequently, don't touch my face, and just practice overall common sense, I don't need to wear it anymore.

So... what that means is that I can go places now without putting up with strange looks or, if I decide to take it off, long lectures from well-meaning people. I won't feel like I have a bright red, light-up arrow pointing at me telling everyone that I was/am sick and/or different and/or not "normal" etc, etc. I think I can handle to ouchy shots if  I can start getting out more without getting "the looks."

Yes, I know that's not true, most of it is all in my head (I overthink things too much) and I had a good talk with my friend (who got me all my super cute masks, by the way) that was helping me regain my courage to try and venture out again despite what happened at the volleyball game. I was planning on going to church in January and going to the Heartland National Church Planting Conference, with my mask. But now, I don't have to! :-) Yay!

And just in case anyone is wondering, all my awesome cute masks will be hung up on my wall so I can still look at and admire their cuteness, and to remember how wearing them feels so I make sure not to make others feel that way.

Sometimes life is hard. It is tough to be tough. But God gives good moments too. Sometimes life is good. And I may struggle being grateful for the hard things when I don't see that they have any purpose, but I am grateful for the good things in life. Happy news from my doctor saying I don't need to wear a mask anymore, is one of those things. An early Christmas present from God. :-)

Friday, December 17, 2010

That's how it is

Yesterday, I decided to make my debut back into the real world. That means I went somewhere that didn't involve people wearing white lab coats and/or scrubs, hospital waiting rooms and exam tables covered in paper that crinkles loudly whenever you move. I went to... a volleyball game.

Ok, so my siblings practically got on their knees to beg me to go and came up with every reason they could think of to convince me of why I should go. They didn't have to do much convincing because going out to a volleyball game to watch my siblings play sounded a lot better than staying home by myself watching a movie or playing my iPod.

I had envisioned a fun day, watching my siblings play and cheering loudly for them, having enough energy to stay out the whole day, and not having a lot of people come over to talk about kidney/health related stuff. Of course, I expected them to be happy to see me and ask me how I was doing but because we're at a volleyball game, they're going to have other things to do so then I wouldn't have to get into some long conversation about how I'm feeling, how long I was surgery, how's my dad, how's my mom, how's the family, were you back for Thanksgiving, Christmas is going to be wonderful for y'all this year... You get the picture.

And there was no reason that it shouldn't have gone the way I had hoped, except for one thing that stood in my way. The mask.

Yes, the dreaded face mask that I'm supposed to wear whenever I'm out of my house around other people. For some reason, family members don't count, I guess. My brothers, kind-hearted as their intentions were meant, were all going to wear masks with me so I didn't have to do it alone. But the two that were playing quickly found a reason to ditch the masks before we even went in the building and the last little brother made it through the front door but lost his as soon as he got the first odd stares. It's not easy being different.

I was able to keep my mask on with a few people outside the gym, but as soon as I walked into the gym and found my seat on the bleachers, I couldn't take the looks anymore. Even though my mask was cute, even though I had an important reason for wearing it, even though I didn't know half of those kids in that room... I was too caught up in what people thought of me that I didn't keep it on. And then... I wished I had just stayed home because what happened next made me wish that the earth would have just swallowed me whole so I could disappear.

First, my parents were not happy with me at all and I got ugly with my mom about it. I'm grateful that she loves me, no matter what, and forgives me when I come into her room at night to ask for forgiveness for my attitude because I can't sleep knowing I was nasty to her about something that wasn't even her fault.

After that, a well meaning person decided to come sit right in front of me and ask if me and my dad were being good patients. Obviously, at that moment, I was not being a "good patient" and she then made sure to point that fact out to me by teasing and "harassing" (her words) me. And that was all before the first game even started! Things didn't get better after that. Let's just say, I got a huge lesson in self control and a reminder that being a responsible adult is not an easy thing. I never wished more that I could just disappear then I did during those two and half hours (give or take, not sure of the exact time) sitting on those painfully hard bleachers.

After the game, my mom brought me home, even though my siblings still had to practice afterwards and she was going to shopping with my dad. And that's what happened when I went out somewhere "non-hospital" and was trying to avoid staying at the house alone. As I was taking my shoes off in my room, alone in the house, thinking over the events of what had just happened and how hard things had been when all I wanted was to go cheer at my siblings volleyball game, I started to cry. Mostly because I was angry but partly because I was sad at how my "perfect, fun day" turned out. Then I watched a movie with the volume turned up loud so I couldn't hear myself think anymore.

Because of that, I have decided not to wear a mask anymore except to the hospitals. And my parents aren't going to take me anywhere (except to the hospital for appointments) for the next six weeks that I'm supposed to be wearing a mask. I don't expect anyone to understand but I just thought I'd let you all know that you won't be seeing me again for another six weeks unless I wear a mask and/or my parents let me go with them.

Life is hard, sometimes. It's tough being tough. I don't always feel like "hanging on" anymore. Maybe my decision will change, maybe I won't care so much about what other people think (or what I think). But for now... that's how it is.

Monday, December 13, 2010

Home... for now

I got back home yesterday afternoon. My mom was very nice to me and canceled some things she had planned on Saturday so we could stay an extra day at the RMH and I could heal up a little more. I definitely needed that.

The two hours in the car were still uncomfortable and a little painful but not as bad as it could've been if we  had left Saturday or Friday evening. (shudder)

And, once again, I can't sneeze without feeling like someone just hit me in the stomach. Ouch! You never realize what little things you take for granted until you don't have them anymore, like the ability to sneeze. With the transplant surgery, sneezing was sort of my measuring stick as to how quickly I was healing up because if I sneezed and it didn't hurt *too* bad, then I knew I was getting a little better, but if I sneezed and it felt like my stomach was ripping open again... then I knew I was still pretty bad and healing up was going to take awhile.

So, we'll see how long before I stop feeling the all to familiar aches and pains of this "minor" surgery and when I'll be back on my feet again. I can only get better from here, right? I hope that's a yes, seeing as how I don't have any more tubes, catheters, and lines they can pull out of me now...

I have another appointment sometime next week, not sure of the exact date but I'll be sure to blog about how that turns out. I'm going in for some bloodwork tomorrow and I also have to meet with my dialysis nurse here to do some kind of closure thing for the books since I'm not a PD patient anymore. (Thank God!) Kind of looking forward to going back to that place and not have to need any more treatments and sit for long hours watching my blood (and everyone else's, for that matter) circulate through a machine...

I think that's all I have to blog about... just wanted to let y'all know I was home... for now

Friday, December 10, 2010

Just like I thought it would be...

Well I made it through this last surgery... Barely. But it is sorta nice to know I was right about most of what was going to happen which means my stressing out wasn't totally unfounded. From the doctor's point of view, the surgery went great and everything looked good. From my side, it hurt almost as bad as when they put it in and I've been very naseaus since waking up in recovery and throwing up feels like my stomach has just been ripped open. Not at all close to what I was repeatedly told it was going be like by the doctors, nurses and family members. Also, you would think after doing this for so long that we would know what to expect and how to plan for surgeries but nooooo... This week really could not have gone worse for me unless, of course, something had gone wrong and I had to be hospitalized. I was not ready for this emotionally or physically for this surgery and we have to be back home tomorrow evening and I'm not healed up enough to spend two hours bouncing around in a car. Ugh, talk about frustrating! And the worst part is that I was starting to feel a little more better and now the rug has been pulled out from under me and I've got to start the recovery process almost completely over again. Sigh.......

Sorry this is so negative right now. I usually wait till the mood passes before posting but I needed to update and let y'all know what happened so, like everything else this week, I didn't have the luxery of waiting. Time has definitely not been on my side.

So, there you have it. I'll post again after I get home, either tomorrow night or Sunday.

Wednesday, December 8, 2010

Just so y'all know

I'm back at the Ronald McDonald House again anxiously waiting for another surgery tomorrow morning to remove my stint and my dialysis catheter. Very minor, all outpatient, the actual procedure should only be 20-30 minutes and I'll be back at the RMH probably before lunch. But that really doesn't help my nerves any and I don't think I've ever been more stressed in my life than I am right now. It's just too soon after my last, very traumatic and painful transplant surgery and I wish I had more time to recover and prepare for this than I've had.

So that's really all for right now. I'll try to write an update tomorrow and let y'all know how it went.

Thursday, December 2, 2010

Time for an update, maybe?

It's been a while since I posted any kind of update so here is one, finally!

Yesterday, me and my dad both had appointments so... at the ungodly hour of 5:30 in the morning, my parents and I jumped in the car and made the trip to Oklahoma City, my home away from home.

My first appointment was at the vascular clinic to talk to the doctor about the blood clot in my neck and was told that this was a provoked incident, I'm not at risk for recurring blood clots unless I have similar "situations" such as catheters or central lines in my body and I only have to be on treatment for two more months and not the rest of my life. Yay. Actually, other than hearing mostly what I already knew, the doctor was very informative and told me and my mom a lot about veins and arteries and fun stuff like that. Very interesting.

Then I headed to the transplant clinic and waited forever before being called back into the waiting room and met with some of my favorite nurses and my surgeon. Everything with my kidney is working just great and I'm healing up just fine. Still dealing with the after-math of C-diff but otherwise, everything is fine.

Then, because my dad had an appointment and I would have been really bored, my friend came to get me and take me to another friend's house for lunch. I stayed there almost all day and had a really great time. I love my friends. I have the best friends ever!

I also now know where to get cute, fun face masks that I actually want to wear instead of wearing an ugly yellow mask that doesn't match anything I wear, gets hot, stuffy and sweaty, and makes me look like a contagious aids patient or something. Guess? Korea! Because over there in Asia, they wear face masks all the time and actually have very cute, soft jersey knit face masks that are washable and reusable and actually match my outfits like an accessory and don't look ugly.

My friend knows some missionaries in Korea and asked them to get her some fun, cute face masks for me and gave them to me yesterday. Other than getting to see her and my other friend, getting those made my day. I'll post some pictures of them soon. :-)

Well... I think that's all I have to say right now. My other surgery is exactly one week from today, on the 9th. Me and my mom are planning on staying at the Ronald McDonald House again for a few days with that but I'll post again when the plans are finalized, before we leave.

Today was my one month anniversary for the transplant surgery. Doesn't feel like it's been one month but that's one month down and five more to go before "full recovery" according to my nurses. Sooooo ready for this year to be over!

Hope y'all had a great Thanksgiving! I did :-)