Update... somewhat

Well... if I wasn't feeling so well I could be tempted to get discouraged. But, I'm not, well, maybe a little but mostly I'm not because I am feeling better and I'm able to do some things again. I not only went to church Sunday morning but I also made it a baby shower that afternoon and was able to hang out with friends. I walked across the yard to my grandma's house and was able to visit with her a little and I got my crochet box out of storage and started crocheting again.

In light of all the things that I'm able to do now and that I'm feeling physically better, I was not too disappointed to learn today that my Doctor does not want me to start PD (home) dialysis yet because my protein levels still aren't quite high enough. Apparently PD takes protein away once I start so if I'm too low than it could cause more problems so in another two weeks, I will have more blood drawn and those labs will determine whether or not I can start the PD training. Sigh.... I never wanted to have to be on hemo-dialysis and if I could go back, I would have had the PD port put in way sooner so I would have been ready when I needed to start. Hindsight vision is 20/20 sometimes but you almost never see things clearly ahead in this crazy journey called life.

My dad made it home today from the transplant testing and he's got another appointment scheduled in September when the doctor will look over all the results of his tests and decide if he can donate or not. Unfortunately, that was the soonest they could schedule him in and then anytime after that, assuming he is the donor, we can schedule the surgery. I am feeling a lot better now and I am sure I'm gonna feel even better with the PD as soon as I can start that but nothing is going to compare to after the transplant and being able to get off of dialysis completely. There's still a few months left before the new year and I'm hoping that we will be able to push things fast enough so I can get this transplant as soon as possible.

So.... now it's back to waiting because that's basically the story of my life. If patience is a virtue than I am going to be the most virtuous woman in the whole world with how much I've had to wait in my life. Actually, not really, but I really have had to wait a lot during the past couple of years with this kidney disease in my life. And trust me when I tell you that a hospital's motto is "hurry up and wait." Unless you're bleeding to death or having a heart attack.... you're probably gonna wait a good couple of hours.

To end on a more humorous note, since I didn't really have all that good news to share, my mother is at it again with her schemes to try and kill me. Since shoving a straw down my throat while I was dozing off didn't work, Sunday morning she wacked me in the head with a blow dryer while she was styling my hair. You know how when you wave the blow dryer back and forth so the hot air doesn't burn you, well she waved it too close to my head and thunked me with it. And she didn't even notice! She only noticed when I said "Ow!" and then she stopped and asked "Did I just hit you?" and I said "Yes." and then my mom did what she always does... she laughed. My hair looked amazing that whole day, though, and I told my mom that she might have missed her true calling as a hair stylist because she's always been really good at doing my hair for me. Next time, though... I'm gonna tell her not to get so close with the hair dryer. :-)

Phase two in progress

My dad left yesterday afternoon to go up to OKC and get tested today and tomorrow. It's the phase two of the donor testing, if you will, and it will determine whether or not my dad will be able to donate his kidney to me.

I knew it was coming up, obviously, I had been blogging about it for almost two weeks now, but when he left yesterday it still came as a sort of surprise. In the evenings, my family comes together to pray before we go to bed and last night my mom was praying for my dad and the following thought just hit me.

My dad is up there for me. He's undergoing a bunch of tests like an EKG, ultrasounds, blood panels, etc... for me. If he clears and is able to donate to me, then he'll also be undergoing surgery for me too. It made me almost cry to realize the love that my dad has for me.

My dad was gone a lot when I was growing up. That's what happens when you're active-duty military (he's retired military now). He would be gone for months at a time and then my whole family would pack up and move every 3-4 years. But when my dad was home, he made a point to be involved in our (me and my siblings) lives. Now we don't have to move anymore and my dad doesn't have anymore TDY's so he's able to be home even more than he ever was when I was younger. I love that.

Since my original diagnosis when I was 12, my dad always told me that one of his kidneys had my name on it and that if I ever needed it he would give it to me. That used to annoy me a little bit, but not anymore. My dad is going through donor testing at this moment so I would be pretty stupid if I didn't realize that he meant it every time he said he was going to give me my kidney.

I'm praying so hard that my dad will clear the testing and be able to donate to me. My dad told me the other day that he always wanted to be a hero and this is his way to do it. He's not even scared of the surgery, at all.

My dad already was my hero. My dad can beat Superman any day of the week (because my dad would be smart enough to always have kryptonite with him) and I recently started teasing him that he missed his true calling as an FBI investigator because he just searched my room for some important papers my sister misplaced and found them without anything looking like it was touched. My dad is so cool and I love him so much.

Please pray for my dad. He'll come home tomorrow after testing. He's probably going to be real tired but he'll probably still go back to work the next day as if nothing had happened unless I can talk him into staying home and resting. I am my daddy's girl, and this girl loves her daddy.

Will update as soon as I know anything.

Still nothing!

Unfortunately, I still have nothing new to report. My blood pressure is still high, I have not gotten the training yet to start home dialysis and my Dad hasn't gone to OU to be tested yet so there's still no progress on the transplant process yet either.

On a positive note, though, I think my body is finally tolerating dialysis and I am feeling loads better. Today has been a very good dialysis day and is probably now my best dialysis day yet.

And yesterday, a friend came to visit and she brought her new baby so I could hold him. It made me sooooo happy and I loved holding him. He fell asleep in my arms and slept almost the entire visit. Nothing melts my heart more than an adorable, sleeping baby in my arms, let me tell ya! This friend also brought me an awesome fashion book to look at and color in, a fuzzy, red blanket (cause I can't ever have enough blankets!), and a bag of Ranch Doritos (My second favorite kind of chips) all in a lime green bag since I'm going through a lime green phase right now. I had a great time and I am so thankful for the Godly friends God has blessed me with. :-)

So... all that to say... As soon as there's any progress on anything I will let you know here. Thanks for all of your prayers and support. <3
 

Nothing new to report...

I didn't blog the last two days because there just wasn't anything to write about, really. No new developments with the transplant process, the switch to PD (home dialysis), or the lowering of my blood pressure.

And there still isn't anything new so I'm writing to inform you all of that fact that there is nothing to inform you of. Yes, I know, my brilliance of logic is astounding. :-p

This week though, I do have some things coming up. Blood work tomorrow which will determine how my levels are doing and if I'm strong enough to start the PD training and can switch to home dialysis. My dad is going to OU to have a bunch of donor tests done to determine whether or not he is going to be able to donate to me or not (I'm hoping and praying that he will). I'm on an additional blood pressure medication that is supposed to be helping but I'm not really seeing that it is but the doctors said that it might take a week before it kicks in and lowers my blood pressure, as opposed to the faster-acting medications that almost made me pass out. My headaches are mostly gone now and when they do come they are less severe than before (even though my BP is even higher than before).

So those will be what I'll probably be writing about sometime soon unless something else happens in which case I will blog about that. :-)

Big praise!

Today I went to church. God answered yes. It's a big praise and I'm happy.

I'm getting my hopes up again but I do hope that this means I will be able to go next week too. I know I can't judge how I'm going to feel from week to week but this might mean dialysis is helping a little bit and I am on an upswing in my health. That also might mean that I'm getting a little stronger and might mean that I'll be able to switch to home dialysis soon and that might mean getting even stronger and being able to handle the transplant surgery better.

Of course, that's all speculation right now but that's how I have to live my life. I don't know how I'm going to feel from one moment to the next so a lot of my plans, even basic ones like going to church, involve a lot of guess-work and require a lot of flexibility because of my health. But, because I'm in a good mood right now, I'm looking at the positive side of things.

I missed church. A lot. It was good to wear a skirt again. It was good to wear high heels again. It was good to put makeup on again. It was good to look and feel pretty again. My parents, especially my mom, tells me all the time that I look beautiful but my mom also tells me that she thinks I would look beautiful bald. I've never had a boyfriend (and I don't want one, for the record) so I don't dress up for anyone really, I'm just vain and I like to look at myself in the mirror and think "Wow, I look good!" Yes, I know, I'm so vain. I like putting on makeup and dressing in skirts and high heels and that's why I do it. Even when I'm a little dizzy because of my blood pressure or medicine side effects I still wear my high heels because I like to look at them.

I missed the people there too. My assistant pastor and former youth pastor (former for me because I'm no longer in the youth group but he's still the youth pastor) gave me a hug when I walked in and told me how he had been praying that I would be able to go to church today. It encouraged me like nothing else to realize that I was the direct "yes" answer to his prayers. And not just his, but his wife's prayers also and anybody else who was praying. As I have written before, God still would have answered even if I hadn't had been able to go, but it would have been discouraging and I think God knows I've had enough discouragement lately that He gave me a break and showed me that He's still working and using me to encourage others and bring glory to Himself.

I am not living through this nightmare in my life for nothing, I know God has a plan for it and when He shows it to me, in a strange way, it makes it worth it. The trials of getting ready for church, going to church, and coming home very tired and needing to rest were all worth it because I saw how it encouraged someone else.

And it was more than just one someone, actually, it was a lot of someones. I also got to finally meet a new baby that has an incredibly cool name and an extremely bald head making him one of the cutest boys I've ever seen and his mom is planning on bringing him over so I can cuddle with him (insert girly squeal here) I also got to visit with some of my smaller friends that I have missed seeing. The problem with them being smaller is that they grow rapidly so my smaller friends have all gotten a little bigger and more grown up. Even though my hair is drastically shorter and I look a lot different, most of them all still recognized me and one of my favorite little boys made a point to complement my new hair-cut. I love my younger friends! :-)

All that to say... today was pretty awesome!

BP meds, fashion and hope

What do the three have in common? Uh... I don't know that's just what I felt like titling this. :-)

Still no update on either the transplant or the home dialysis (PD) yet but I do have a relatively small health update before I write whatever else I want. The physician's assistant (PA) at the dialysis center came by today with some new blood pressure medication to take in addition to my current BP med in hopes that it will bring my BP down in the next few days. It works slower so I shouldn't have any sudden drops in my BP and almost pass out like what happened the quick acting medicine that they gave me on Thursday.

However, my current BP medication isn't changing so when I run out of this new medicine than what's to keep my BP from sky-rocketing again if my current medicine isn't doing anything? I don't know, I guess we'll see. I didn't have a bad headache today, though, so I'm glad for that. I want to think that I'm tolerating dialysis better but I usually think that on Saturday because I feel considerably better on Saturday than Tuesdays. I was told this is because of the ups and downs in the blood levels because of dialysis being only every other day and then a two day break. The toxins in my blood are going to start building up Sunday through Monday and then when I go for dialysis on Tuesday the machine is gonna have a lot of work to do stripping my blood of all those toxins. Lovely, isn't it? (Note the sarcasm...)

With that being said, here's what else I feel like writing about. For those of you that do not know, I'm very interested in fashion. I LOVE LOVE LOVE (yes, really love) shoes more than anything, but clothes and accessorizing will hold my attention like nothing else. I did consider the fashion industry at one time but my fascination with this has really become more of a hobby than anything else.

My favorite TV show that I watch whenever I have the chance (which isn't too often, normally, since my family doesn't have cable) is TLC's "What NOT To Wear" and I would happily watch my friends, Stacy and Clinton, radically transform frumpy, unkempt people into stylish, classy members of society all day long if I could. Unfortunately, my favorite show doesn't play very often and I usually only get one episode on Thursdays when I'm at the dialysis center.

This is assuming I have control of the TV, which usually I do, but the center only has one TV every two chairs and I almost got into a battle over the TV with a one-legged man who, I think (I'm giving him the benefit of a doubt, here), didn't think I was watching so he changed the channel. I let him have it until he had to go to the bathroom and then I changed it back to what I was watching. He came back and fell asleep but if he had tried to change it again I told my mom that it was not going to pretty.

Ahem. All that to say, now that I'm sharing the TV with an elderly man who sleeps the entire time and doesn't watch TV when he's awake, I get it all to myself and can watch whatever I want. But my favorite show won't play every time I'm there so I've had to get familiar with some other channels and find something semi-decent to watch. So lately, I've been watching America's Next Top Model by Tyra Banks on Bravo. Bravo has another designer show that I like to watch too but I can't remember what it's called at the moment.

Tyra Banks, for those that don't know, is a retired model and has her own show and her own company and probably her own brand of perfume somewhere too. ANTM was playing reruns today and the show was down to seven contestants and the photo-shoot was going to portray each one as a seven-deadly sin. After applying some ghoulish makeup and changing into their outfits (which were none too skimpy to say the least), the models were lowered into the bottom of an eight-foot grave with their props, and told to display anger, pride, envy, lust... etc. until the photographer got what they wanted.

I was watching this as the nurse was unhooking me from the dialysis machine and we both heard Tyra Banks' second hand guy in the show say "This is the kind of shot you'll see in a high-fashion magazine..." We both said at the same time "That's fashion!?" My nurse, then made a comment about how, if that was fashionable, she didn't want to be fashionable anymore. I agreed.

I realize that they were portraying the seven deadly sins in their shots but they were told to display them "sexily" and to show off their "sexuality" in the shot. And that is where the fashion movement is going today, people. It's been going that way a long time and what we have going on today is a public dressing down of people world-wide and turning people into sex-objects.

Girls are being taught at younger and younger ages to show off their body, strut and flaunt, flirt and wear high heels and makeup. And we wonder why so many women are abused? They may very possibly be provoking their attacker without even realizing it! That breaks my heart for them.

Simple matter of truth, cover up. It's more dignified, classy and professional (not to mention safer with all the sexual predators around today) to wear modest, loose (not skin-tight) clothing that fit you well than to "let it all hang out."

The media is bombarding us with images of ghoulish, half-dressed, sexy looking women (whose photos may be doctored anyway!) and telling us that this is fashion. Here's my answer to them... NO! They say fashion is all about advancement and individuality as well but, in reality, the Industry wants everyone to look the same and buy their product. Mascara commercials show women with a whole lot more than mascara on their eyes (as in, the heavy eye-liner) looking like strippers because that's "fashionable" and that's what their mascara will do for you. Like I want to look like a stripper!

No thanks! I'll make my own fashion and I'll wear it confidently and defiantly of anyone who tells me that I would look better in skinny jeans and tank tops. Oh, and if you couldn't tell from this, I love dress codes too and think that any institution should enforce a dress code to all workers and that all underwear commercials should be banned from Cable TV completely.

And that little spiel went waaaay longer than I thought and I'm probably gonna scare everyone away from my blog with my opinions but if other people's opinions are enough to rattle you than maybe you shouldn't be reading anybody's blog. My hope is that my opinion will help you shape and form your own and that you know you're just as free to share your opinion as I am and if we disagree then let's do so in a respectful manner. Life is too short to spend squabbling over differences of opinion.

I am going to close this post with a request for prayer that I would be able to go to church tomorrow (and wear my "fashionable" clothes! haha!) Last week, I had made plans to go and then I got sick, so this week, I'm not going to say one way or another whether I'm going to be able to go or not because I just don't know right now. I'm going to plan for it and get all cleaned up tonight but when it really comes down to it, I'm not going to know until my mom wakes me up tomorrow morning and asks me if I'm going to go or not. Church is going to take a lot out of me energy wise but I haven't been anywhere except the dialysis center (and the ER once) since my surgery and I am beginning to feel like a caged animal. Trapped and stuck are too adjectives that come to mind right now...

Unlike last week, though, I'm not getting my hopes up. Yes, I'll still be disappointed if I can't go because, unlike what Buddha teaches, we cannot empty ourselves of desire so we will always have some measure of disappointment when we don't get what we want because that's how God created us. You're welcome to believe otherwise if you want (because I will be *tolerant* of you even if you're not tolerant of me... ah, another post for another time) but Buddha is wrong and the Bible is right no matter how you look at it. And I choose to believe what is TRUE even if I'm not seeing that truth in my life because of how dark it is right now.

(For the record... I do NOT recommend America's Next Top Model and I do recommend What NOT To Wear with the caution that they do use mild profanity (mostly blasphemy, unfortunately)

What NOT to say

Since this is my "off day" (meaning no dialysis today) and there's really not much to report as far as progress in the whole transplant process or being able to start home dialysis... I've decided to share the reason I have such a hard time loving people sometimes.

It's because people say stupid things. Especially after they find out you have a chronic illness like kidney disease.

We all do it, though, myself included. Before I needed to use a wheelchair for a time (still do on occasion), I used to get very uncomfortable when someone was in the room sitting in a wheelchair. It was awkward around them, I didn't know what to say, but I wanted to ask what happened, but I didn't want to offend them by staring, so I tried some side glances, and tried to figure out what was wrong myself.... and on and on. I know what it's like to feel awkward around someone who is "sick" and I also know what it means when someone shows you value and respect as a person, even though you're in a wheelchair.

When I needed to use a wheelchair, it was like I had become a different person all of a sudden. People were staring and gawking at me but avoiding me as if I had something contagious. Those that dared to ask, usually asked this way, and it's the number one thing NOT to say.

"What's wrong with you?"

Makes me want to ask "What's wrong with you, dummy!?" Whoa, now, you might be thinking, that's a little extreme. Well... what do you expect from me, I just got asked what was wrong with me. How is that supposed to make me feel? I'll tell you how it makes me feel. It makes me feel like something is wrong with me, that maybe God made a mistake in how He made me because I'm "not like everybody else", that I don't fit in and maybe I just shouldn't leave my house if I'm not going to be accepted by anyone anywhere.

True, that's not what was MEANT by the question but nevertheless, that's how it made me feel. And that's from people who care about me.

So, how do we avoid this number one slip-up? First off, by striking that phrase from your vocabulary altogether. Nothing good starts by saying "What's wrong ------- " in referring to other people. Second, there's an alternative to asking that is much more polite and respectful.

"What happened to you?"

I didn't choose to have a kidney disease, I don't like it and I don't want it but that's what I got. It *happened* to me and if people ask what happened to me, then I'm much more willing to talk to them about my illness than if they stupidly ask what's wrong with me.

The world is basically divided into two types of people: The ill people and the healthy people. Being ill with a chronic disease is like being handed a lifetime membership to an exclusive club that you never wanted to join in the first place. I don't know what it's like to be healthy but I do remember that, when I felt better, I stayed as far away from "the club" and it's "members" as I could. Now, this is my life and I plan to stay as close to this "club" as I can even when I get better. Most people don't know how to relate to the ill but I do.

There will be many more posts like this because there are many stupid things people say and I give you a first hand look at how to relate to someone with a chronic illness. I'm not talking about y'all relating to me, but being able to relate to anyone you come across who is ill or handicapped in some form or fashion. Because you will come across someone else with a chronic illness, I can guarantee it, and if my writing this helps make life a little bit easier for someone else than it will have been worth it.