I Can Smell My Neck

That would be on the long list of sentences I never thought I'd say. But I can. When the canula get clogged up, it stinks. When the collar soaks up too much goo, it stinks. The pad under the corner of the trach also soaks up goo, and, you guessed it, stinks. When they all converge, it is just a big stinky neck. Yuck.

Tuesday was tired. I went to Kelly's office Tuesday morning go he could go to his meeting. CJ and Holly fussed over me. Is that chair comfortable enough? Where could we get a better chair? Do you need a blanket? It was very sweet. Mostly I just sat around and read the paper and did the puzzles. Holly and I did have nice visit. And someone passed along tomato plants. Not that I necessarily needed eleven more tomato plants, but hey, plants make happiness.

On the way home we stopped at the grocery store. We were out of pretty much everything. Nuts. Seeds. Fruit. Probiotics. Fish oil. Fiber. It was crazy. The price at the end took my breath away, especially since we didn't buy any meat and people bring us dinner every other night, with plenty of left overs. Wow. Of course, we really were out of everything. So I shouldn't feel too bad, right?

After a morning out, including a big shopping trip, I was whipped. The grocery store is especially taxing because there is a certain mental restraint that has to go on. I cannot let myself go to, "I'll never eat that again land." There are certain advantages to having your head pulled towards the floor. The store is one of those times when it helps you avoid things. Most things.

It pretty much a crash on the couch kind of afternoon. I did go get the mail, but I didn't take my walk. I did soak in the tub, but I didn't get those tomatoes planted.

But, I found my new addiction. I am not a big TV person. Downton Abbey. Big Bang Theory. Mike and Molly. That pretty much constitutes our weekly viewing. Since all three have ended for the season, our viewing has primarily been Strawberry Shortcake and My Little Pony. Why yes, sometimes I do hear that theme music playing in my sleep and want to jab out my own ear drums. Why do you ask?

I was searching around Netflix for something to watch. Lots of people recommended Breaking Bad, but that whole teacher with cancer thing is a little too close to home for me. I searched for several different things, but didn't find anything good. I had read a couple things about Call the Midwife and decided to try it. I am hooked. I watched three episodes today and I may try to sneak in another even though it is already 9:20, again.

Kelly pulled out my trach and reseated it. The tool actually makes it a lot easier even though Dr. A says it isn't necessary. I'm sure after 20 years of teaching people to do it, he doesn't need the tool, but it went much smoother with it and seated much better. And, hey, with it in all the way my voice came back and my throat doesn't hurt as much. Yay for that!

Wednesday morning was another day of wake up swollen in the wee hours of the morning, and wake up again later feeling puffy and punky. I got up and made breakfast from all our wonderful food we got yesterday. Nice to not have to scrape together breakfast.

After I ate I crawled in the shower and just let the hot water pour on my back and shoulders. If I could just keep that wet heat going all the time I could hold my head up and my neck and shoulders wouldn't ache. That would be nice.

I again wore myself out showering and had to rest sitting on the toilet lid before I could even drag myself to the couch. Where I watched, you guessed it, Call the Midwife. Kelly worked and had conference calls and the fence guy came.  After he left I managed to get into more than a robe so we could run some errands.

We got the flea meds, the graduation cards, the mailing envelopes, a new humidifier and chocolate for the basket at school. Whew. It wasn't a long trip, but everything seems to wear me out. Sad.

After we got home I watched a little news and had a short nap. At the end of my nap, a hacked and clogged the canula. I managed to unlatch it by myself and had it half pulled out, thinking how impressed Kelly would be, when the whole trach slipped out in my hand. So much for impressed. But, as he said, good thing Dr. A showed him how to do this or there would be a lot of freaking out right now. The reason both pieces came out is they were stuck together with the stuff I hacked, so unless I really held the trach down, it was bound to pull out.

Fortunately with the new tool he slipped it right back in after cleaning, nice and quick and easy.

Thank you to Joan B. for the Thai food and pie. Other than Pad Thai at the Saturday Market, I have never had Thai food before. I suspect I am going to be thankful for the preemptive Pepcid Kelly added to mine as it smelled quite spicy. Based on the sweat coming off Kelly's brow, I think it more than smelled spicy.

Karissa successfully gave her Helen Keller speech today. There isn't much left to focus on for the balance of the school year. I think the electric houses are the last of it. Or, in her case, the electric ballet studio. That girl lives for ballet. She studies it. She revels in it. It is impressive. Some people go their whole lives and don't find their passion. She found hers at eight.

I did get the two largest tomato plants in the ground. I even managed to get off the ground with only the fence and my shovel to help me, an accomplishment. I still have nine itty bitty little tomato starts. And the graduation cards. And a few birthdays. And the clutter piles that have to be sorted by me.  But if I turn on Netflix, it all goes away.  I'm beginning to see the allure...

Tomorrow is acupuncture in the morning and the cardiologist in the afternoon and Eileen is coming to swap-- yum cherries! The housekeeper comes, too. I'm sure there is more than enough to keep her busy. Friday is radiation Day 0, physical therapy, and Channeling. I'll be pretty fried by the end of it.

Karina will be home for the weekend, bringing quite a bit of her dorm stuff as she finishes next week. Saturday is the Belmont. I am hoping California Chrome can do what hasn't been done since 1978, win the Triple Crown. Yes I will be watching all 47 hours of coverage where the rehash all the things they've said during the Preakness and the Derby. Yes, I can be a racing junkie. I started playing the ponies at the track when I was a very little girl ( think three or four). Nothing would make my dad more frustrated when I would pick a ridiculous longshot and he would "book" my bet instead of actually making it. When the three legged nag I picked won the race at 70 to 1 and I was smart enough to know how much my "ticket" was worth, he loathed having to pay me. Not everyone can say their dad was their first  Bookie.

Oh, I forgot to mention the giant scam! When I was getting formula, the nutrition company was Johnny on the spot with supplies and so forth. Once I stopped using formula, the customer service dropped of dramatically. When Kelly called to order syringes in February, they said they couldn't get the good ones anymore and sent us a dozen crappy ones that were basically uncleanable, therefore really single use, or water only. Not amazingly useful. Kelly got online and ordered two cases of the good syringes. Since if you clean them carefully the last for ages, that could be a lifetime supply.

In March or April, we ordered just some 2x2 split sponges for my tube site and a replacement Lopez Valve. One of them we had was terrible and only lasted three days. The value of 2x2 sponges and a Lopez Valve is roughly $20.

We get a bill for February for the syringes. Syringes, per diem, $147. When you read more closely, you see that the insurance company has already paid them well over $300 for this same order. The 12 crappy syringes. Almost $500. What?

Kelly calls the Nutrition company. After some bouncing around it comes to light that if they send me anything at all in a month, even a $5 item, they bill my insurance company the per diem for the entire month. $25 a day! Are you kidding me??? So not only are we stuck paying $147 for 12 syringes we couldn't even use, we also will be paying another $147 for $20 worth of basic supplies. And my insurance company will have paid @$700 for these same supplies. So $1,000 for maybe $50 worth of stuff, including shipping. Nice work if you can get it.

Needless to say, we canceled our subscription with them. They were shocked. Surprised. Why would we want to do that? Are we sure? Where will get our supplies?

Looking forward to seeing friends. Nervous about radiation. Worried about what the cardiologist will say. Excited for our rotating visiting friends to come. Plotting more planting that I likely don't have energy for. Trying to figure out how I can sneak in another episode. See, this is why I have to be careful with books. Once I start, I have to finish. There are four seasons of Call the Midwife.  That's a lot of all nighters...

Good night and hopes for a swelling free night tonight. A girl can dream, can't she??

Love,
Kiara