Been feeling pretty icky lately. I've come to the conclusion that the COQ10 supplement I started has been giving me tummy problems, so I'm not taking it anymore. I don't feel like it was helping me, anyway. My TPN has been adjusted, twice now, since my blood sugars were in the 300s over the weekend. So with the new formula, I now am adding 48 units of insulin to the bag, tapering up one hour, down two, and I'll be hooked up for 14 hours, like I was before. Hopefully this keeps my sugars in check.

We're still having problems with my port returning blood. We tried the cathflo today, let it dwell for 30 minutes, nothing. Let it sit a little longer, still nothing. Eventually it worked when I laid down, but then my flush was sluggish. So I guess we'll see next week.

I'm tempted to take a phenergan and just go to bed tonight. I don't feel like dealing with anything else. I've been relatively happier for the last few weeks, I don't know why I don't want to deal with life here recently. My face is breaking out, and I don't know how to stop it. I wash my face and cleanse it with witchhazel every day, which usually does the trick. But I guess my skin hates me, too.

I just feel like crying right now.

I'm finally getting somewhere with my TPN adjusting. It was supposed to happen last week, but my PCM never signed and sent the orders to Thrive, but now that that's been done, my next shipment of TPN will be adjusted! There will be 272 grams of dextrose and 20 grams of lipids in the bag. I will be adding 42 units of humulin (insulin) instead of 35 units. All this gives me an extra 220 calories a day, and I am seriously hoping this will put some fat on me!

   

I'm looking to see an oculoplastic surgeon for possible correctional surgery for my ptosis. It has gotten much worse, and I can barely keep my left eye open now. I know a few people who would be embarrassed for such a cosmetic issue, but I mean... to me it's just another step in my treatment. I know I already look funny; 4'10, afro-ish hairdo. I weigh less than your kid. But it's all good because I'm totally okay with it. I am kinda nervous about what the surgery entails, what with needles being all up in my eye and shit. But there are two ways it can be done. Internally and externally. Externally being the option I DON'T want to do because I would have to be awake for that one. Ugh no thank you. Anyway, it'd be nice to be able to see properly again.

I've been emailing my nurses and people on my case at Thrive and the hospital. It's nice to not have to make and wait for appointments now.

I think I'm going to be switching to the Curlin pump for my TPN. Right now I'm using the Gemstar. My Thrive nurse recommended it because I guess it's more accurate and the tubing for the Gemstar is a bit hard to come by. I'm interested in the Curlin's purge mode, personally. With my Gemstar, I have to hold down a purge button to push the TPN through the tubing when I spike my TPN, whereas with the Curlin, I would only have to start and stop it when I'm ready to hook it up. It's kind of hard to explain if you're not experienced with infusion pumps.

For the past four days or so my port hasn't been giving me any draw back. It would continue to flush fine, with both saline and heparin, but just refused to give me any blood. I asked Tina about it and she said it was more than likely a positional thing, and we should only be worried if it refuses to flush. So the next couple days I kept trying, still nothing. Yesterday was my dressing change day, and I figured we would get something if we changed the needle, but it still didn't work, so I ended up having to get stabbed in the arm. That sucks. I decided to email Thrive and ask about Cathflo, which is in the process of getting to me. But, thank goodness, this morning I got blood return! :D If only it would have decided to work yesterday...

ugh

I think I'm going to start counting my blessings once a week starting tomorrow. Once a week, because I've tried doing it every day and it gets repetitive and I get bored with it instead of happier. I am also stopping my iron pills because honestly I feel like I've had more abdominal pain with them than when I wasn't on them. I emailed my doctor and let him know, also to ask him about a possible corrective surgery for my ptosis... We'll see how that goes. We never went to lunch and shopping with the GIGGS lady on Wednesday; it ended up snowing and we decided to reschedule. I guess we're planning on going tomorrow, weather permitting. I guess I don't really have all my thoughts together right now. I keep spacing out. I'll continue this post tomorrow.

Short update.

Saw my PCM today. I guess I weigh 68.3 lbs now, but I'm pretty sure that was my uterus, shoes, and jacket weighing me down. I don't think I gained 5 lbs in two days. Anyway:

• Added phenergan as needed and ferrous sulfate (iron) to my regimen. I am now taking nexium, iron, melatonin, zofran/phenergan.
• Going to start taking COQ10 every morning, also. Tired of all my doctors kind of brushing it off as something that doesn't need to be considered. I have a mitochondrial disease, for chrissakes.
• Stopped lantus intake, like I mentioned before, and upping my humulin to 42 units from 35 units, along with more lipids in my TPN. I should get my new formula Thursday, and I'll be sure to post it here.
• Also considering adding more supplements to my diet, but not sure yet. Looking into more natural ways and easier things to digest. Anyone have any suggestions?
• Asked about whether it'd be okay for me to go up the Cog Railway, what with the elevation and all. Doc okay'ed it and said I have no history of breathing troubles so as long as I stay hydrated there should be no problem. Very excited about this!!!
• Meeting with Nancy at Pikes Peak Therapeutic Riding Center on May 2nd at 1400. Not sure what to expect, but not getting my hopes up for therapy because I doubt my insurance will cover it. Maybe she'll let me just visit the horses once in a while.

Going to the SFAC (Soldier and Family Assistance Center) tomorrow for lunch with John and meeting with one of the GIGSS. She wants to take me shopping... This will be pretty awkward.

John took James (his uncle) to the airport this morning. It was nice having him here, I like visitors. I miss it when Spencer was here and he and John had tons of fun and I'd cook dinner for them. I like being appreciated for my cooking. Not that John doesn't compliment me, he always does. I just kind of expect it from him now. haha. Anyway, we had fun; they went out, went to the mall and whatnot, saw a movie. Played the xbox, watched a couple movies. Last night we played Monopoly: The Beatles edition for like three hours and I totally kicked their asses:

Yeeeaaah SON.

I think it'd be nice if we moved to Tennessee. I miss having people to hang out with, without having that awkward I-just-met-you phase... I don't like meeting people.

Tonight I'm cooking salmon fillets, stir-fry veggies, and herb rice for John. I might have some of the veggies or rice. But I can't stand salmon, so he can have that crap.

Jeez I just never know how to start these things.

I've started wearing bandanas instead of the old hat I have. It's become pretty itchy and since the weather's getting a little warmer, I figured a bandana would be better suited for my afro-esque hairdo.

I've been feeling pretty good lately, after an episode of intense abdominal pains (which are gone, by the way). It's been a pretty long weekend. John's uncle arrived Thursday morning and they've been all over the place since. We went to Garden of the Gods Friday morning. That was fun, but also very tiring.

I've gotten in some pretty awesome bracelet-making and napping and just doing what I want. Today I got my dressing changed and was able to take a nice long shower. I was going to shave my legs but I ended up being too lazy and just enjoyed the hot water instead.

Last week I started not using lantus. Lantus is the long acting insulin I used to stab myself in the leg with. I no longer have to deal with that! High fives all around! This next TPN shipment should include more lipids and more insulin, meaning more calories and hopefully more weight gain for me. I want so badly to gain more weight, and because I can't handle a lot of protein, shakes and smoothies haven't been working out very well.

Tomorrow I have an appointment to see my PCM, and I'm not quite sure what I'm going to say to him. I did have a few concerns but now I'm not as worried as I was. I guess I'll ask him about COQ10 and whether he thinks I would benefit from it. But knowing him he'll probably ignore me and tell me to ask my GI doctor because he would know more. Ugh. Fuck it. Maybe I should just try it myself.

For the past few days I've made some pretty big inner decisions for myself and my well being. I'm tired of feeling like I can't do something, or feeling like there's no hope for me. As a realist, however, I know that the last thing I need to do for myself is set up false hopes. I also believe in mind-over-matter, and that if I truly put my mind to it, I could very well heal myself. Maybe not cure my disease, but I could help my body fight it in a healthier way.

I've decided to keep trying to eat. I don't care what it will take for me to be able to keep it down, but I'm willing to try anything. I want to get more nutrients in my body through food, and not just the TPN. I want to drink teas and actually feel them heal my digestive system. I am determined to make this happen for myself, and anyone who doesn't believe in me will be erased from my life.

I have made a decision to simply live and not die. Not yet. It is not my time. I feel very strongly that I haven't done yet what I was put on the earth to do, and I will do it before I stop breathing, whatever it may be.

Dogs, God, and Skin Breakdown

I have been sitting here for the past two hours staring at my laptop wondering how I should start this post. I guess, well... there ya go.

A lot happened today and I am seriously emotionally and mentally exhausted. Last week, I was visited by two GI Grannies for Soldier Support (GIGSS). When they came I wasn't really feeling too well, so John did most of the talking and I honestly don't remember much of it. They asked us if we needed anything, what our interests were, etc. etc. Got to know us a little bit. Some of the programs that were mentioned were art therapy for both John and myself, and the Air Force Academy's equestrian program. I would love to be able to go visit some horses some day. Anyway, that meeting was really nice and better than I expected.

The next day, another "Granny" emailed me and said she has a therapy dog, Gipper, who would love to meet me, and we could set up a time for next week. That meeting was today, and this is where all the emotional exhaustion happens. First of all, Gipper is absolutely adorable. He's a golden retriever that eats animal crackers for treats.

And he prays, too.

Speaking of praying, part of this whole GIGSS thing is to help me with my spirituality, and usually I'm very put off by people coming to see me and trying to talk to me about Jesus. But these two ladies, Pat and Kris, were something different. At first I was really shy and I didn't want to talk to them. But they made me feel really comfortable. Especially with Gipper there. Anyway, we got to talking, and finally they asked me if I had one wish, what would I wish for? Obviously I would wish that I wasn't sick... I'd wish that my disease was gone and I was a healthy, thriving individual. Anyway, they asked me if I would like to pray for that. To pray for healing.

Those that know me know I have problems with religion. I have a lot of fear inside of me. I don't feel like I've ever really been close to God, but I would like to be. I've never prayed by myself before, because I've always felt silly. But something in me wants to be okay, and I let these women pray for me. I have never had anyone pray for me like this before; there was so much care and compassion in her voice, and she held my hand to keep me safe, and suddenly I just felt like... I felt so overwhelmed by how much love I was feeling. I know it seems cheesy, but I've only felt like this twice in my entire life, and each time had to do with God. Suddenly I just felt overpowered, and I started crying really hard, pouring the tears like crazy. And they didn't freak out, they didn't run to get me some tissue. They held me and they let me cry. I felt loved, and safe, and I was happy I was somewhere I needed to be right then. I can't explain it but I feel like I'll be seeing them more often.

John was at an appointment during this, so he's unaware of what happened. He knows they came and that they had a dog, that's about it. I won't talk to him about things like this much, not because he wouldn't listen or support me--he definitely supports me--but because he wouldn't really understand it. But that's another blog post.

In other news, I'm afraid my port is already starting to cause my skin to break down. I'm pretty concerned about this, but my nurses and Thrive and even John seem to not think anything of it.

I have a feeling that a Hickman tunneled catheter is in my foreseeable future.

I have some bracelets to make, so I'm going to cut this off here~~~