To be honest, there are several things I could have titled this blog post. Things like:
Year in Review: 2014 (Or the Year That Kind of Sucked)
The Year I Almost Lost My Husband
The Year I Learned How Many Awesome People There Are In This World
Really, I could just go on and on, but I won’t. Mostly because this is probably going to be a super long blog post anyway. So, yeah, let’s just get to it, shall we?
2014 started off…weird, I guess. Phillip and I were both sick and thought we were going through Zyrtec withdrawals. We hadn’t gotten to go out to the ranch anywhere near as much as we’d wanted, to the point where my first Facebook conversation of January was this one:
Debbie and her husband Wayne and two of our awesome neighbors out at the ranch (we say neighbors, but they live probably a couple miles away from our place *g*), and have kind of adopted us I guess. They’re just amazing people and we love spending time with them when we can, and this was Debbie checking in on us to make sure we were okay after such an extended absence (we hadn’t been out there since Thanksgiving).
I also got a TON of writing done at the beginning of the year. That first week of January I think I got something like 30,000 words written on Between the Seams. It was an insane amount of writing, but it was really good stuff.
The first half of the year was kind of like treading water, I guess. I started doing Crossfit with a local trainer, Brian. I honestly loved the workouts and Brian’s an awesome trainer, but I kept injuring my back and kept missing workouts. That, and Phillip was having a really hard time waking up (there were seriously mornings when it took me well over two hours to get him to fully wake up and get ready for work), or when he did wake up he would almost immediately start puking. I missed a few workouts due to that, too. So needless to say, it wasn’t working for me anywhere near as well as it should have. Yes, I made some strength gains and found out that I REALLY like Olympic Lifting, but I also somehow lost a TON of endurance and kept gaining weight (and no, it wasn’t muscle weight–I kept gaining fat in my belly). In May I decided to give it a rest, because my body was telling me that it wasn’t happy, and I didn’t want to waste Brian’s time by missing more workouts than I was making. It was both a good and bad sort of thing. Like I said, I learned I really enjoy Olympic Lifting, and I made a friend in Brian, who’s a pretty cool guy, and I learned how to laugh at myself after missing a box jump and face-planting in front of other people. I wish I hadn’t missed so many workouts. I wish I hadn’t kept injuring myself. I wish I hadn’t weirdly gained belly fat while doing it. But those last two things also led me to finally getting some answers a few months later, and at least I now know WHY I kept injuring myself and why I was gaining belly fat.
It ends up that me quitting Crossfit in May was a bit of a blessing, considering what happened at the beginning of June. Like I’ve written before, Phillip just kept getting sicker through the first part of the year. He finally went to a doctor in January, and ended up seeing a Nurse Practitioner that first time. The NP was a bit off-putting (and I usually like NPs) in that he assumed that because Phillip’s blind that he didn’t have a job and was on social security and Medicare, and wasn’t completely comfortable talking to Phillip and instead kept trying to talk to me (quickest way to piss me off, BTW). The NP thought it was GERD and put Phillip on Nexium. Insurance wouldn’t cover it, so they switched him to Prilosec. Yeah, that didn’t help. Gave him some nausea pills he was only supposed to use a couple times a day. Yeah, there were days when he used five or six of those little things. Went back and actually saw a doctor this time. Doctor tested for an ulcer (no ulcer) and also thought it was GERD. He suggested Phillip have labs done, but also referred him to a Gastroenterologist for an endoscopy. The doctor’s office scheduled the labs for the same morning of the endoscopy. We opted for the endoscopy and honestly never got around to re-scheduling the labs. The endoscopy was on April 30.
We got the results back, and there was nothing abnormal, just some irritation that was most likely caused by the fact that Phillip kept puking and could barely hold meals down at this point. He got worse in May. The first week of June was particularly bad, and the weekend of June 7 and 8 he stayed in bed the entire time. The Longhorns were in the baseball playoffs that weekend and we watched almost all of the NCAAA tournament games in bed (he wanted me close by). We kept thinking he just needed to eat more protein, so I tried to get him some stuff that would be easy on his stomach but that was high in protein–like Greek yogurt and scrambled eggs.
At one point that weekend, he said to me, “I feel like I’m dying.”
I went into denial, even though my gut told me this wasn’t good. My husband was SICK.
Monday, June 9th he went to work, and called me mid-afternoon to come pick him up. He’d almost passed out and then puked in the bathroom, and they were threatening to call an ambulance. I picked him up. It was a really bad ride home because he kept fighting nausea. We got home and I asked him, “Okay, do you want to go to an urgent care clinic or the ER? Because it’s one or the other.” We let the dogs out, debated the merits of each, and finally I said, “Y’know, the ER has everything testing-wise, whereas at the urgent care clinic they may just end up sending you to the ER, which would be time wasted.” So on to St. David’s South Austin we went. We got lucky and got an ER doctor who was curious and wanted to figure out WHAT was going on. Yes, he initially thought it was GERD, too. But then Phillip’s labs came back and he was extremely anemic. What ensued was hands-down the scariest night of my life, followed by one of the most stressful weeks I think I’ve ever experienced.
To be fair, the last half of this year has been probably the most stressful six months I’ve ever experienced (and God knows my life hasn’t really been all sunshine and rainbows as it is). In some ways, this is the stuff that’s harder for me to open up about, because I’ve hidden it from pretty much everyone except Phillip.
This shit’s been hard.
I’ve held it together surprisingly well, I guess. I’ve felt like I had to, that Phillip needed me to. From that initial diagnosis of kidney failure to the first dialysis treatment in the hospital to every dialysis treatment since then, I’ve held it together pretty well. I guess if you look closely you can see the signs of someone who’s barely keeping her shit together. The house is a fucking mess (granted, we’re not exactly neat freaks, but here lately it’s gotten bad even for us). I’m tired all the time (which, to be fair, is also tied in to my health and my low Vitamin D and B12, and the fact that I’m snoring again due to my weight). I have a fairly short temper much more often than usual (it’s gone back to how short it was when I was a kid), which makes me feel out of control which makes me want to do things to regain control (like restrict–which I haven’t done, thank God). I feel like crying much more often than I care to admit (which is saying a lot for someone who’s generally a crier anyway). I’ve only cooked a handful of meals in the past month to two months–we’ve been relying far too much on takeout, eating out and stuff from cans–which honestly isn’t good for either of us.
I suck at asking for help for myself. I can ask for help for Phillip–no problem there.
Obviously, I have no problem asking for things for my husband.
This is where my faith in humanity was restored. The number of people who filled out that application and who were so willing to donate a kidney was amazing. We spent many, many hours feeling very emotional over the outpouring of love from family, friends and total strangers. Phillip kept asking me, “how do you thank someone for giving you a part of themselves?” All I could tell him was, “you live, honey.” And I guess that’s really all you can do, right? Even though I’m a writer, it’s almost impossible to find the words to express the amount of love and gratitude we feel for every single person who’s helped us along the way–no matter how they helped.
Having support has helped me, for sure. I’m a pretty strong person, I’m very independent, I don’t like asking for help. Phillip’s the same way. But we couldn’t have done this alone (and knowing that has been weirdly hard on me, too). When I say no one realizes how difficult the past six months have been for me, I mean that. I almost lost my husband. Our third wedding anniversary is next month. I can’t lose my husband so soon. God can’t be that cruel, right?
And yes, I was very angry at God for most of June. Logically, I know I shouldn’t have been, and I felt bad for being angry at God. But I was angry and had nowhere to direct that anger, so it ended up being directed at God and myself, and beating myself up for not making him go to the hospital sooner, for not pushing the doctors more, for not forcing him to go get labs done even though he was puking his brains out pretty much every morning and had trouble getting out of bed and the thought of needles only made him puke more. There were so many “ifs” in my head, and so many things I blamed myself for (and that in some ways I still try to blame myself for). I’ve beaten myself up til I’m pretty much black and blue on the inside. It hasn’t made me feel any better. It hasn’t given me any answers. But shouldn’t I have KNOWN? Shouldn’t I have MADE Phillip go to the doctor? Shouldn’t I have questioned the doctors in the first place?
I know all of that comes out of fear. The past six months have indeed been scary. From that first night in the hospital on, it’s been scary. Phillip having the catheter in his chest has scared the bejeeses out of me (what if it got infected? what if it somehow got pulled out?). Every time there’s been an issue with the dialysis machine I’ve gotten a little scared. Why’s it beeping like that? Why’d it stop? Why’s his blood pressure going up? That fear has definitely decreased over time, and luckily there are some really nice techs and nurses at his dialysis clinic. Getting up at 4:30 three mornings a week has sucked, but it’s keeping him alive so I can’t complain too much. The first time we went out to the ranch I was scared. What if something happened? What if something happened with his catheter? We’re at least an hour away from the nearest hospital out there, although Life Flight is available if necessary. It ended up everything went fine–other than finding out illegals had broken into our cabin and stolen all of our drinks (water and Cokes) and some food. We got to talk to the Sheriff and a very nice Border Patrol Agent, and the purple sage was wildly in bloom so we got lots of gorgeous photos.
Some of my fears have eased up, although I still fear the Big Unknown, meaning I wonder constantly, “how much longer do I have him?” I try to take things one day at a time, but I’ve never been good with the unknown and uncertainty.
Honestly, I could go on and on about how shitty this has all been, and how hard this has been on both of us (Phillip says it’s been harder on me, and I think it probably has been emotionally), but I won’t, because A) I’m sure no one wants to hear me whine and B) there have been so many bright spots.
Like I mentioned before, the outpouring of love and support has been amazing. We had two people (that we know of) make it through all the initial screening stuff and lab work and be ok’d to go Baylor in Dallas for pre-transplant evaluations. Our first donor didn’t make it beyond that step, but the fact that this person (who wishes to remain anonymous to everyone but us) was willing to donate a kidney to someone they hadn’t even met (this person is a friend of mine who’s never met Phillip) is beyond amazing. I already knew I adored this person and that there were great reasons for doing so (because I knew years ago this person was awesomely amazing anyway *g*), and their selflessness is beyond appreciated. There are no words. Really, there are no words.
The second person was Phillip’s cousin Alicia, who did make it through the process and has been approved by the board. Right now the transplant is tentatively scheduled for January 20th, but could get moved up or down depending upon availability. I don’t think it’s sunk in yet for either of us, mostly because the scheduler hasn’t called us yet to getting anything actually scheduled (she asked Alicia how the 20th sounded, and then proceeded to go on vacation for two weeks without telling us a damned thing…*sigh*). But we did get to see Alicia this past Saturday at a family Christmas gathering, and I somehow managed to hold it together and not cry and get snot all over her pretty purple sweater.
Beyond these two folks, though, there have been so many others who have been there and helped us in one way or another these past six months. I’m sure I’ll miss someone, but I don’t know that I’ve properly shown my gratitude (again with the holding shit in) and feel like now’s as good a time as any, right? So in no particular order…
Our parents. Phillip’s parents and my dad and stepmom. They’ve been amazing. I know this has been hard and scary for Phillip’s parents (no parent wants to lose their child or see their child go through something like this), but they’re simply the best in-laws a girl could have and have done so much to help us. From paying to have cleaners come in the week after Phillip was released from the hospital to Phillip’s dad putting up a fence and creating a yard so Tiny and Kimber will have somewhere to stay while we’re in Dallas for the transplant, they’ve been amazing and wonderful. My parents have also been great. Dad and Lynn have kept up with every update, prayed and gotten other prayer warriors involved on Phillip’s behalf. It’s been really good for me to have them to talk to, even about random stuff, because it’s helped to remind me that Phillip and I are not alone in this.
Our good friends Andi and Mikey have been great. The week Phillip was in the hospital Mikey came down to south Austin (he lives in North Austin, and if you know anything about Austin traffic you know that that’s not always a nice little drive to make) and let the dogs out every morning and let them run around for a while so they weren’t confined to their crates all day. As worried as I was about Phillip, I was also super worried about our babies, so having that help definitely helped ease my mind. Andi came down from Ft. Worth the last weekend Phillip was in the hospital, and has since moved back to Austin. Since she’s moved back to Austin back in September she’s been a huge help; she’s brought supper over on Tuesday or Thursday nights (dialysis days) so I didn’t have to worry about cooking, she’s taken Phillip to dialysis on Saturday mornings so I could sleep in, and it’s just been great having her in town so we can meet up whenever, hang out and enjoy good food and good conversation.
Our favorite tech and nurse at the dialysis clinic–Mitch and Lauren (respectively)–are just awesome. The staff there is generally pretty good anyway, but these two? I think we’re both going to miss Mitch and Lauren. They’re a married couple. Mitch is super extroverted, a total smartass and has this fantastic sense of humor. Lauren’s probably more like me–an introvert with extrovert tendencies–but she also has a great sense of humor. And they’re both just really good at their jobs. Phillip’s apparently allergic to adhesive, and will break out under the bandages they put over his catheter. The clinic pretty much only uses silk or paper tape (paper tape is REALLY bad on Phillip’s skin), so Lauren started bringing island dressings in on the mornings she knew she would be Phillip’s nurse. At first we thought maybe she was getting them from a medical supplier, but then we put two and two together and realized she was paying for them out of her own pocket so that his skin wouldn’t get so irritated. It’s funny how the little things fill you with so much gratitude.
There have been so many other people, too, who have offered support and prayers, that I honestly can’t name them all. But it is welcome and appreciated.
The past couple months of this year have honestly been better–even before getting the news that Alicia was approved. We’ve kind of settled in to our “new normal,” and made dialysis work around our life. We still have bumpy spots–dialysis beats Phillip up and he’s pretty much a zombie three days a week, and every now and then I go crazy and bawl my eyes out–but overall things have settled, I guess. Just in time for things to get crazy again. *g*
But in November, I got my very first deer:
And a couple weeks later Phillip got this very nice buck:
And then Christmas happened and we got to see a crap ton of family and spend Christmas together, which is always a good thing.