Lots o' updates.

I had my levator resection Friday. It was terrible. Seriously the worst procedure I have ever gone through. I was waiting for it for about a month, anticipating and talking to other people who have had it done, being reassured and whatnot. I was okay, even after talking to the surgeon the first time. Everyone said they didn't remember or feel a thing. The surgeon said I wouldn't remember it at all.

Bullshit. I remember every single little detail, and that shit sucks so hard. They didn't put me under because the surgeon needed me to be awake so I could open and close my eyes when he told me to. They gave me a little something to "take the edge off" in my IV, and then he numbed my eyelids with a tiny needle, which I definitely felt, and it definitely hurt. By that point I was already crying and hyperventilating, so they gave me more oxygen. I was shaking, crying, squeezing the nurse's hand off. It was terrible. Mind you, once my eyelids were numb, I couldn't feel the procedure at all, but there were certain pressures I felt that I did not want to feel. And then, I think he used a laser or something, because I could smell my own skin burning. It was as if I were being tortured by SAW. Ugh!

Anyway, here are some before and after shots.

Freaky, right? Yeah. I have to put this antibiotic gunk on my stitches twice a day, and the surgeon gave me some eye drops because my eyes won't close all the way for the first few days. That sucks, too.

Did I mention that I finally got my wheelchair? Because I did. And it's awesome.

This weekend has been pretty amazing. My husband and I are pretty bad at saving money, and we've been shopping quite a bit. More than we should, really. But this isn't a financial advice blog. We went to see Monsters University Thursday as a pre-surgery fun date. It was really good. Friday was the surgery, and after that I pretty much slept all day. That night Thompson (John's friend) came over and they ordered pizza and stayed up all night. Saturday we went grocery shopping, and other-stuff-shopping. And then today, after I woke up from an accident and cleaned myself up (seriously, I hate this shit), we got ready and drove to the Town Center in Aurora because my incredible husband wanted to take me to the Disney store! I have the best husband ever. It was so much fun and even though we both came home absolutely exhausted, I am extremely happy with how the day turned out.

I'm not sure what's to come of my time with the horses... I haven't heard from anyone, but John is going to call the instructor this week to see how things are. We haven't been going to the art class on Wednesdays, but I've been drawing more, so I'm okay with that.

My next appointment is next Monday, the 8th. It's my follow-up with Dr. Slade, the surgeon who cut my face up. ha. That should go pretty good, unless my stitches decide to be stupid and continue to annoy the hell out of me. Damn these things.

My TPN just beeped at me, and it's time to unhook, so I'm gonna get on that. Oh! I don't remember if I mentioned this, since I don't read past posts. We switched my TPN infusion from night to daytime, and from 14 hours to 12 hours. So I'm getting more sleep (unless I have accidents) and I have much more energy in the daytime. They also added hydration fluids so there's that, too.

Okay, off I go. The bath tub is screaming my name.

Ahhh! I feel like exploding!

Everything is getting worse. I have thrown up 5 times in the last 4 days. I can't hold any food down, and I've lost 3 lbs. All while trying to manage my walking situation as best I can. I'm really scared, and I'm trying to just live around it all, but it's hard to just live my life when I am constantly reminded of how fast my body is giving up on me. I realize that the last few posts haven't been the happiest, and I'm sorry for that. I wanted to use this blog as something positive, but I think I'd rather be honest than try to hide how I'm actually feeling.

I haven't been able to see the PPTRC horses because of these stupid fires. Last weekend would have been my weekend back, but they were evacuated. And now I can't even walk so I don't think I'll be able to go into to corral in a wheelchair.

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I had to stop earlier because I honestly felt so low I couldn't finish it. After a day of being lazy, hooking up to my TPN, then a hot bath, I feel a little bit better so here we go.

Throughout today I've been emailing between my Thrive team, Dr. Tebo, and Dr. Phillips (a clinical dietitian I saw to discuss my TPN at Evans), discussing my TPN and medications and whatnot. I have an appointment with Dr. Tebo tomorrow at 1400.

I'll be starting my TPN during the day tomorrow, also. So that should be interesting... I'm kind of nervous, even though there's really no reason to be.

They're also upping my doses of Nexium and Zofran, thank goodness. Hopefully that'll help me a bit.

It's taking me a lot longer to get this post across because I'm so distracted by other things. So I'm just going to update more tomorrow.

Happy Father's Day :-)

I sent my daddy his card like two weeks ago, and he got it last week. After what happened with my mom's Mother's Day card, I didn't wanna risk it again. I called him today to tell him personally, though. They both seemed to be in a good mood, so that was nice. Man, I really miss my parents.

It's been a bit since I've posted, so I figured I may as well. I don't really remember all the happenings in order, so like always, I'm just gonna ramble.

I've been playing my DS like crazy since Sunday, mainly Animal Crossing: New Leaf, which I've been waiting like 6 months for. AH! John preordered the new gaming consoles, the Xbox One and the PS4, as well as some more games... Goodness, so much money. He got his bonus the other day, as well, so he decided to pay them off.
We've been spending the weekend shopping at thrift stores, and other places that we normally don't get to really splurge in usually. I guess it's been fun retail therapy. He was able to get some clothes, and I got some clothes, some bags, and a heated blanket. We haven't been home a lot this weekend, and I'm exhausted.

Someone for physical therapy came by Friday. John tried to tell my nurse, Tina, that PT wouldn't help me because it's a nerve thing, not a muscle thing. But she sent someone over anyway. Of course, it was kind of a waste, and he said the only thing he could suggest was to "use it or lose it" which is also kind of pointless, since I literally cannot move anything from the ankle down by myself. My calves are getting weaker and weaker, and my balance is much worse now. We got a shower chair for the bathroom. I should be getting my own wheelchair this week.

There was a few fires going on around Colorado Springs this last week, one was in Black Forest, about 8 miles away from the Pikes Peak Therapeutic Riding Center. So the horses were evacuated and I didn't get to go see them yesterday. It sucks, I really miss them. But I am so glad they're safe and sound, and no damage was done to any of the PPTRC buildings.

Oh! Ha, I shaved my head again. John got all pissy, but he's really a good sport about it... I think he's just holding things in. But it's my head, and I'd rather be comfortable than pretty. Besides, I think I look okay with a shaved head.

We went to the WTU's Organizational Day Friday also. The only thing I wanted to do there was get a caricature done, and we ended up waiting in line for an hour for that, but it was definitely worth it:

Isn't that cute? :-)

It's been so nice to get out of the house. I've been ignoring my phone for the most part, and just spending time with John. I do come home pretty beat, but it's worth it. A lot of people tell us we're both very lucky to have each other, but I feel like I'm lucky one. Most guys would just up and leave if they had to face our kind of situation. I don't know what I would do without my husband.

I'm a bit nauseous tonight. So I think I'll go lay down and read.

I have a headache.

This is gonna be short. I thought I had a lot to say, but I guess not.

Saw the eye doctor today, I was really worried about it, too, but everything went peachy. He was really laid back and made me feel comfortable, and he seemed to know what the hell he was talking about.

We're going to try and schedule the procedure for next month sometime. If you're curious, it's called an external levator resection.

I feel like crap, and my head is throbbing, so I'm going to leave it at that.

Oh, another thing; we're still having issues with getting draw back from my port. Tried cathflo for 3 hours today, and I still had to breathe in and hold it in order for the blood to flow. So far still no problems with flushing or infusion, so that's good.

Nighty night.

I seriously suck at coming up with titles for these things.

I have been to see Dr. Scot Tebo three times in the last two weeks. Today's and last time were both same-day appointments, and he's by far the best doctor I've ever seen. I really hope we can get to switch to him officially.

So, what happened this morning... I went to see him because I needed to mention my neuropathy and my bladder problems. I asked about my legs, what the next step would be, etc. I asked about my bladder and possibly getting a suprapubic catheter, which I'm pretty nervous about. He put in a request for referrals to the neurologist I saw last year who suggested the MNGIE, and a referral to a urologist. So now we'll be playing the waiting game on those. Hopefully not too long.

He gave me gabapentin for my restless legs, 300MG, one a night.

Honestly, I'm more nervous than anything right now. So much is happening to my body in such a short amount of time, and it's freaking me out. I'm losing my legs, my bladder is acting up, I think my hearing is even getting worse, what little I even have.

I feel like I'm neglecting my blog. Maybe I should keep to a once a week thing, and maybe write down things to talk about throughout the week... But I don't want anyone to get bored reading so much.

On a lighter note, we're petsitting a dog named Simba for a month, for a friend of John's who had to go to California for training. He's very well-behaved and a lot of fun to hang out with. I told his owner I'm keeping him forever. ha.

I don't see the horses again until the 15th. It's driving me crazy, I miss them so much. I hope I'll be able to at least stand by them then. I obviously didn't expect this whole not walking thing to happen so fast. Ugh.

Another thing that happened this week for us: I lost a very good friend because of ignorance, arrogance, and mindless immature facebook drama. I don't miss her, and neither does John. She said some pretty hurtful things, and we decided her true colors started showing and we are done with her and her family.

Things happen for a reason, I guess. And I have plenty of support from people I haven't even actually met, so it definitely wasn't my loss.

Maybe Karma will bite her in the ass real hard for the things she said to me. I won't hope or wish for anything, but lord knows I'll be here giggling when it does.