January 3

When last I left you, I was heading out to pick up the prescription for the antibiotics. That turned into the usual CF. Wegman's told me my insurance company declined the prescription request because it was too soon to fill it. I told them that was ridiculous, the insurance company is not allowed to dictate when I get an infection. So I left Wegman's while they made some phone calls to find out what happened. Later that afternoon they left me a message. The Strong Pharmacy had see the prescription and filled it even though I had specifically told Dr. Miller that I wanted it filled at my Wegman's. I don't understand how their prescription system works but it seriously sucks. I wish I could dictate that Strong NEVER fills any of my prescriptions but I'm taking a zinc compound and a thiamine compound that Wegman's refuses to fill for me. So I'm stuck getting screwed over by the Strong Pharmacy whenever they decide it would be fun messing with my life. Picking up a prescription at Strong is at least an hour and 15 minute project plus I have to pay for parking. Yeah, yeah, if you're there for less than 30 minutes it's free. Let me tell you, in the hundreds of trips that I've made there in the past 5 months I've only managed to pop in and out in less than 30 minutes one stinking time. It takes 10-15 minutes just to park in their parking garage, and then the hospital itself is huge so you walk for miles just to get anywhere. Then you stand in line at the pharmacy and they do not employee the best and brightest in that place so you're talking another 10-15 minutes to get your goods. Yeah, it just sucks. Anyway, Wegman's had Strong cancel their prescription and Wegman's then was able to fill it for me. So even though Wegman's is 3 miles up the road and usually it's a 20 minute thing to pick up drugs there, I had to make the trip twice because of Strong. I finally took my first pill late Saturday afternoon.

Sunday I decided to go run some errands, do a little shopping. I went to put my trach tube in because I usually wear it when I'm going out in public. It just looks cleaner than a big, gaping hole in my neck. I was sliding it in and there was some resistance but there's always some resistance because my hole shrinks when the trach tube is out and I have to stretch it back out. But then the resistance felt kind of wrong so I yanked the trach tube back out and the speech prosthesis came flying out with it and landed in the sink. Oh shit. I started crying. I spent $250 of my own money on this thing and it only lasted 2 days. There was a plastic tab on it that looked jagged so I assumed I must have ripped something and I had no idea what this thing looked like when it went in so I assumed part of it was still inside of me. On top of that, it had been place in a small fistula in the roof of my stoma which was now twice the size it had been because this thing had been in it, stretching it open. I thought I was choking on saliva before? OMG. So I immediately sent a note to Dr. Miller explaining what happened and asked what I should do. I got a phone call Monday morning that Baby doll returned for me before he headed off to work. Dr. Miller was in surgery all day and Michelle was out of the office so Meredith, the director of speech pathology, wanted me to come in so she could take a look at what was going on. I took Ethan and Sterling in for a final vet appointment first. They're finally recovered from their respiratory infections so they were able to get their vaccinations. After dropping them back at home, I popped over to the hospital. It was good news all over the place. It turns out the jagged end on the plastic tab was where Dr. Miller had trimmed something after he had placed the device. The device itself was whole and undamaged. Meredith actually managed to re-insert it. It took her a few tries because with the safety tab trimmed off, there was a good chance that she could accidentally drop this thing into my lungs which would be a very bad thing. So she messed around for about an hour but finally managed to get it back in. I was once again a happy girl. This time she placed it so the piece of tab that's still attached is facing the front of the stoma. You can actually see it hanging out of the hole a little bit. So now when I go to put my trach tube in, I use a pair of clamps to grab a hold of the tab and I hold the prosthesis in place while I carefully slide the trach tube in. Both Meredith and Dr. Miller said there really should not have been a problem with me using the trach tube with the prosthesis in place, it was a fluke that I managed to dislodge it, but I'm glad that Meredith gave me a way to prevent another fluke from happening.

So that was my health excitement for the week. I've been on the antibiotics for a week now, I was given a two week run, and my neck is still infected. I hope that it starts clearing up soon. I've been in a lot more pain than usual. Not only has my mouth been burning like crazy but the infected hole in my neck is really painful as well. I've been taking the pain meds every 3 1/2 hours sometimes. I'm already on the last bottle of oxycodone that I got from the last prescription. According to my calculations, I'm going to run out of the pain meds on the 10th and insurance isn't going to let me pick up any more until the 15th. I just hope I have enough morphine to bridge me those 5 days. I might have to ask Dr. Mike to put me in for another bottle of that next week.

I was planning on going back to work on Monday, 1/13 but I am now scheduled for surgery on Wednesday, 1/15. Dr. Miller got permission to remove the plastic tube from my throat. It's only an hour procedure but they're going to have to put me out for it so it's an all day affair. Baby doll took off from work so that he can be my person for it. He's such a sweetheart. I also will be making an appointment that week to get my PEG replaced and I currently have a follow up with Dr. K scheduled although I think that will get moved. It just seemed wrong to go back to work and then take a bunch of time off the first week for a bunch of doctor appointments so I e-mailed HR and asked them if it would be okay to push my start date out to Tuesday, 1/21 (Monday, 1/20 is a holiday). HR said it was fine although if I needed to push out any further, we may need to redo some paperwork. I told her if we need to push out any further, heads were going to roll because I'm ready to get my life back to a semblance of normalcy!

New Year's Eve was quiet. I was supposed to get Baby doll because his daughter was going to a sleepover but she texted him around 8:00 saying she didn't feel good so he ended up at home with her instead. She said her stomach didn't feel good but then proceeded to devour some pizza when they got home so we figured she must have been uncomfortable at the party. A bit of a bummer to have our plans kiboshed but hey, that's what happens when you have kids.

I didn't really firm up a good resolution for the New Year. I'd like to get back into training for 5k's again this year. Not that it was fun doing those last year but I felt good about doing them. I'll have to see if my health permits me to start that training again in February. I was thinking that finding 3 unique ways to donate to charity this year would be kind of cool. I'm already collecting the shoe boxes to fill so I would just need to come up with two more ideas. Baby doll had a good one. He's going to try to make better financial decisions this year. I'd like to get on a budget and stay on it. I also want to look into refinancing my mortgage. I've been wanting to do it for a while but I fear that I won't be allowed because I have the SONYMA mortgage for first time home buyers. I finally decided that it's certainly not going to hurt to drive to the bank and find out if I'm allowed to refinance. I'm paying 5.25% interest right now and I have some friends who got rates as low as 3.00%. I'm told so long as you can knock it down by a full percentage point, then it's worth doing it. So those are some of the things I'll be striving for this year. I told Baby doll that I would resolve to survive this year but it would be just my luck that my health deteriorates even further and my life becomes one huge misery that I can't escape. That would suck!

And on that upbeat thought.....not....I'm going to go curl up and find a movie to watch. :-)