zazamataz

safe and sound

And at home. My preference, always. It’s not my preference to be tired. My minimalist Thanksgiving dinner wore me out but at least I ate it for almost a week. I don’t mind leftovers. I doctor them up a little, too. Christmas dinner is likely to be a steak. I can’t afford a standing rib roast anyway and my goodness that would be a lot of leftovers.

In my news of the weird, my phone has started to connect as the temporary number I had when switching to Mint a few years ago. As far as I know, only two people have be affected but if you try to call or text me and get an odd number from my area code but with a 504 prefix, it might just be me. I will try to talk with Ryan Reynolds again tomorrow.

You know me better than I know myself

Once per week, I said. That isn’t too much. Shall we say that I’m still working on that goal? I still think it’s a reasonable goal but I’m not going to beat myself up over not meeting it.

The good news is I haven’t been back to the hospital. I plan to stay out as well, but as I am feeling quite tired my plan may be in jeopardy. I have a doctor appointment on Tuesday and it feels like he genuinely enjoys sending me to the ER. Wish me well.

On Wednesday, if I’m here, I’m going to put some traction tape on my ramp. I wore the wrong shoes the last time I had a doctor’s appointment and had no traction going up backwards in the wheelchair. Why did I never do this before? It should be helpful and I will have Charlotte to help me. I may have her drag the Christmas boxes out so I can get some merry in this place.

I wish you all a happy holiday season. I know it’s not easy for everyone but I’m still going to wish it for you.

hello world

Does WordPress still call your first post the hello world post? It’s how I feel. I’ve done a very poor job trying to check in here or with all of you wonderful people. You are my village and I can do better than that, it’s just overwhelming.

I just got home from the hospital last night. I had to call Jenn for help last Thursday. We tried to get me in her car but I couldn’t stand up. So we called an ambulance with me out in the driveway. I guess they did a direct admission but I don’t remember for sure, my mind had shut down by then.

Good news, no zombie apocalypse. I was too exhausted to think clearly and my phone was too big of a headache to try to even check emails or type texts. Also I was confused on and off about where I was and trying to juggle the appointments I was missing. Even that run-on sentence was confusing. After a few days things started improving and I got home last night. No rehab this time. Funny, they were just shutting down home health last week and now we are rushing to restart it.

I miss you guys and I do read more than I comment. I try to throw in a like now and then but a comment is more real. Jenn and I and my neighbor were talking about Christmas letters last night. We’ve all had bad things in our lives. Like everyone else. But don’t you feel like you need to be positive?

It’s not all Sunshine and Lollipops and, I, for example, I feel like my Christmas letter and most posts here would read:

“Oh, I was sick and in and out of the hospital and almost died again and again. I’m home again, let’s see how long that lasts. I still haven’t gotten my will done, by the way, and the respiratory therapist keeps acting like no one has told me how the DNR ends up. “

So, what I’m proposing is to write one new post here each week, to at least catch you up. I will read what I can and make one comment on each of your blogs weekly (unless I happen to have more energy). I do care about my friends here and I value your support. I know we are all having a hard journey. I think about you all and I love you. But I also think it’s fair for you to not want to deal with this.

So, what do you think of that idea? Do you have ideas of how to handle the “not sunshine and lollipops” aspects of our lives other than withdrawing?

I haven’t had a good night’s sleep in a month or more

Until last night. There’s nothing like being in my own bed. Not hooked up to IVs or listening to carts and bells going off or someone sneaking in at 4am to take vitals or blood.

I’m home!

And what a wild ride it’s been.

I last left you after I’d gotten to Republic to do rehab and get stronger in order to go home. In fact I was pretty frustrated with lack of therapy due to Humana “losing the paperwork” but I was doing what I could on my own and moving around better. But being on oxygen kept me tethered within 25 feet of my concentrator. Therapy did in fact start and I was making progress when wham. I was hit with an upper respiratory infection.

As I never seem to do things the easy way, I only vaguely remember the ambulance ride to Springfield and was probably (okay, certainly) hallucinating in the ER. My friend Jen was there and. I guess I was in the ER most of the night with doctors doing their usual she’s not going to make it predictions before a bed opened up.

The first 3 or 4 days and nights were a jumble of normal me and hallucinating me until they got things settled down medication wise. And beat down the latest infection. I worked hard to do what I could for myself. As soon as they let me up in a chair I pretty much stayed out of bed. And by the time they started talking about discharge back to the rehab, I had grown terrified of going back there. I was supposed to be getting better there but instead ended up in the hospital for over a week. The nursing home was crowded this time. It had absorbed many patients from another place and it was crowded and busy and not so very clean. All I could see was a cycle of hospitalizations coming up.

So, I went home. My doctor, who wasn’t actually around me much, was the only one opposed to this plan. Everyone else who was working with me was impressed by my progress. Home health will be here tomorrow. When I can, I plan to start cardiopulmonary rehab at my local hospital. Oh, and apparently I’m being referred to a cardiologist. Perhaps I’ll get a real answer as to whether I have congestive heart failure.

Well, I have unpacking to do. I look forward to spending some time catching up with y’all too.

Hello from Republic

I can’t tell you exactly when, now, but it’s been a confusing couple weeks. I was sick a couple weekends ago and coming out of that had a copd exacerbation. I started a prednisone taper but not the antibiotic as I had no fever. Should have taken the antibiotics. This part of the story ends with me being unable to stand and walk and calling a good, really good friend from the bathroom. They came and rescued me and hauled me off to the ER. Not that I remember any of that part. It’s just a story to me. At any rate, ER doc at once pronounced me as dying. They even called my brothers this time to tell them I was dying.

And that was before I got worse and yes I think that is funny. You really have to keep a sense of humor. Besides, next came the zombies. This is a complicated story and I’m not sure I’m up to writing it. I am going to take a break here.

I’m back and it’s tomorrow. I’ve thought about it and tho co2 toxicity stories are weirdly funny to me, let’s just leave it at everyone turned into Zombies and Guy Fieri was one of the ring leaders.

But now I’m back in rehab again. I’m doing better, getting up by myself and all that. What concerns me this go around is getting my stamina back again in order to go home. This is the third day I’ve been working on this post.

And then the big one. I am not sure I will recover enough from a future episode of pneumonia to return home again and I do know I will never survive happily in long term care.

So, goals:

Get home this time
Develop a better plan for knocking pneumonia down before it gets this bad
Get Will done
Use whatever services will help me at home
Prepare for Hospice. I’ve been invited to a hospice bed at Mercy where I know a lot of people and have community friends. And that’s what I plan for now.

And for fun, get back to watercolor painting.