clickmom

promise to myself

So.

My birthday passed (see post below) and I had a great day. So, that was fantastic change of pace. Because really, I haven't had a great day in years.

I'm not exactly sure why but a day or two before my birthday I started to feel upbeat and positive... like I am a lucky person. Lucky would be the word I want to use, so you know I went out and bought a bunch of lottery tickets on my birthday. It wasn't that kind of luck... I shall remain eternally optimistic about the lottery situation. My day will come! 

But, when I really thought about how I was feeling and trying to define that feeling I think what I was feeling the most was gratitude. My new dog park friend Salty had decided she wanted to throw a little dinner get together for me and even though I felt 100% uncomfortable thinking someone was making all of this extra effort for me, I tried so hard to express my gratitude and appreciation. (Damaged goods here. I do feel a little shard of shame for how difficult it is for me to accept that kind of gesture... but I did it!) I worry that I might sound like drunk ME when I start telling people how much they mean to me and express my gratitude, but, I am glad that drunk me is the person who tells everyone how much I love them and not some bar brawling beast of a woman. 

In this moment of gratitude, appreciation and even maybe extra empathy I decided that this year I wanted to give myself a gift. But I didn't want to go out and buy something for myself, I decided that the best gift I could give myself would be to take better care of ME. What does that look like you ask?

Well, it definitely looks like not eating the foods I am allergic to. I have been bingeing on them on and off since thanksgiving and I feel so crappy because of it. This battle inside my head is really insane because I want to eat the foods I am allergic to because part of me finds them soothing, I most definitely eat to soothe myself. While the allergic foods might soothe, I mean it's true as far their taste, texture and initial sugar high go, they do leave me in more and more physical pain and discomfort as time goes on so I need to keep reminding myself of that long term decimation as well.  I have convinced myself that the allergic foods will ultimately make me quite ill in the long term if I don't eliminate them completely. I remember when my mom managed to eat a Mediterranean diet for a whole year. She looked and felt so much healthier and even reduced the astounding amount of medications she was taking. She told me that the doctors thought it was a miraculous change and then she stopped when she got the cancer diagnosis. Poor mom. She had it rough in the end. I have eliminated the allergic foods once again. I'm 3 days in. Let the detox begin.

The other aspect of taking care of myself would be doing something to promote myself in the photo world. I've actually been giving this a ton of thought and I don't think I have the right personality for the fine art world because I won't play the social networking game. I'm not going to pretend to have a relationship with the people who can help me through that world. The whole thing is disingenuous at best. I have seen some of my fellow art school grads make headway by ass kissing their way into that world and I will not partake. For one thing, it would be so incredibly obvious that I did not want to play that game that any sane member of that community would slam the door in my face anyways. So, I am going to come up with some other way to get my work into the world. Do I care if my photos end up as a poster someone gazes upon while pooping? NO, I do not. As long as I have the incentive to keep on going I don't care of I sell 3 handmade prints for $4,000 each or unlimited machine made  prints for $50.  (100% honesty- I don't want to give my images away for nothing, so I care a tiny bit) I think that world will be easier to figure out. At least it will be a world I don't have to be fake to be in. I'll do some research.

And... I wasn't thinking of this when I decided to gift myself self care, but... it looks like I might be accepted into a study ... let's just say on treating depression, which I have high hopes about. I'm really excited about that prospect. I would like to feel like I felt for the 4 months after I did the ketamine 2 summers ago. The weight of the world was lifted off of my shoulders. It was great.

TISMF about my birthday

Well, this day is going to be interesting. I woke up to this text from Husband’s watch …just kidding! I was in bed playing on my phone when I knew he fell because I heard BAM and then the whole house shook and the windows actually rattled so I was already downstairs by the time the text came through .

Didn’t hit his head. He says his ass hurts. Somehow he scraped the top of his hand. It’s bloody.

He’s fine you know it’s always a little unnerving when he when he falls because I ask him if he hit his head and he always says NO but I’m not confident in his ability to honestly answer that question. He seems OK I’m just making him some lunch right now. I took a fantastic hilarious two hour hike with, my friend who just told funny stories the whole time so it was actually a really delightful, relaxing walk and another friend is having a little dinner in my honor tonight so it’s going to be a really good day and let’s talk about this week because I want to talk to you about how positive I feel right now. Maybe it’s because the days are getting a little longer or maybe it’s because I decided that I’m gonna make some pro ME changes because I want to be in good shape when I turn 60 physically and psychologically.

I’m way less worried than anyone else. He’s fine. If I rushed him to the ER every time he fell we’d be there 2-3 times a week. Also, if I rushed him to the ER every time he fell for sure someone would knock on the door to investigate me for elder abuse.

I actually had a super nice day. Managed to keep the husband up all day, poor guy was so tired but he knew how much I wanted him to sleep early so I could go to the dinner. When he started fantasizing about a milkshake I got him in the car and drive down to the ice cream place just to keep him awake for a while longer. It was a good love because then I drove around and did a couple of errands while he happily ate him milkshake in the car. Then he enthusiastically (so tired!) went to bed at 5 so I could get ready and leave. My friend hosted the dinner. There were 5 of us. We laughed the entire time. I felt really loved and supported and so grateful to be surrounded by people who showed up for me despite me probably being the most depressing friend they have. I’m really feeling the love for those who have stuck with me through this hellscape of the husband’s illness and the pandemic. I imagine I’m the frustrating friend who is stuck in a bad place.

It’s been a good day and feel more positive than I have in a long time. I’m planning on a good year.

TISMF

When Josh was leaving I made him stop for a photo with the husband so I could prove to the husband he said GOODBYE because the last time Josh left husband insisted he did not say GOODBYE and the next day after Josh left Husband asks me where Josh is and I tell him he left yesterday and he says “He didn’t even say goodbye” so I smiled like the Cheshire Cat and said WANNA SEE THE PHOTO? And somehow that jarred his memory because he remembered me saying that was why I wanted a photo.

So. The husband asks me if “we have anything sweet?” And he knows damned well he asked me to buy him candy last week so I say “do you mean the candy you asked me to buy for you last week?” And he looks at me like he is a 5 year old kid again and says YEAH. So I get up to pour him a little bowl of candy and while I’m in the kitchen I remember that it’s put out the garbage can night so I say “Hey, don’t let me forget to take the garbage can out tonight!” And the ridiculousness of that thought hits me on a six second delay…. and this evil wicked giggle came out me … and now I am scared of myself!

TISMF snow day edition

What I planned for today was hang out in my PJs until the snow stopped, cook some yummy stuff, immediately snow blow the driveway once the snow stops and before any melting/icing can occur and then make a nice dinner.

What happened was that Salty texted me at 8:30AM “Are you up?” When what she meant was “I had an agonizing night of knee pain after falling 4 feet off of a fallen log I was climbing on yesterday and I need help” I was at her door at 9:44 picking her up to take her to the ER. Nothing had been plowed yet. There were cars all over the place- side streets and I95 that had skidded off the road. We made it to the ER fine. It was deserted. I have never seen such an empty emergency room it was weird!! She has a very badly sprained knee which is so inflamed it is causing any of her muscles that cross by her knee to randomly spasm. They gave her OxyContin, Advil, nausea meds, a knee brace and crutches.

We stopped by CVS to get the prescriptions and I brought her back to her house.

Then I came home to find Josh in the driveway starting to shovel. My heart just about exploded with the joy and love I felt at that very moment. So I pulled in, got my gloves on and got to work along side of him. We took turns shoveling and snow blowing and cleared the whole driveway off while nibbling on the Valentine’s Day chocolate I grabbed while in CVS getting Salty’s prescriptions.

I gathered up my pajamas slipped them back on and finally sat down at 3:52.

recued this from the drafts folder

You guys. The husband sits up in his chair, looks me dead in the face and says "You need to go on a photo trip. Maybe you should go to Alaska for a week."  

Wah??

I entertain him, asking questions like, what he would do without me and how he would get food. He insists that he would be fine for 4 days (I thought you said a week?) and that he would probably just "throw some sandwiches together" for himself. I gave him the face because in the real world where I live this man became incapable of putting cream cheese on a bagel right around the time he stopped working in 2015 and would just gnaw on the whole uncut bagel. Also, at his very best he was maybe capable of searing some animal product that I had lovingly prepared and marinated on the grill, but only if I gave him very specific directions and rescued it before it resembled charcoal. Also, every time I spot him as he clumsily tumbles down the hall I prevent him from falling at least twice... I could go on. So, yeah, I was not going to play that game, but I told him I would take his suggestion seriously and mull it over. It was weird, mostly because historically he has never paused to consider me or my needs. I don't know why he suddenly pulled this out of the air. It was actually really really weird. 

I will give demented husband credit though because in December when I was driving him home from his two week hospital stay he very graciously acknowledged that I had been sacrificing so much of my own life to take care of him and thanked me - also mind blowing.

Last night (it's been a few nights ago now)  the editor called me out of the blue. First it's strange for her to call at night, since she can only speak to me openly when she is away from her demented husband and she typically calls from the car on her way to and from running errands. And, even more strange is that she called with a mission, which was telling me in a very emphatic way that I should give myself a break and leave the husband with the kids to get it.  She was shockingly emphatic. It was weird. 

I don't think I told her that I had the opportunity to go to a Costa Rica with a friend who has an extra bed in her time share but got completely overwhelmed when Marion volunteered to be here and I tried to think of all that I needed to tell her, so I decided that it might not even be worth it. Adding to the panic of explaining just how red alert and present I have to be all of the time was made even worse by me wondering about internet connections, would my cell phone work from there and wondering how I would get back in an emergency. I don't think my kids truly understand how to be on alert 24/7 because they aren't parents. I know that I had no idea before becoming a parent. It's just a different world. Also, quite frankly, this caregiver bullshit is absolutely terrorizing and I don't want to terrorize my children. But anyways, she wouldn't let me off of the phone until I swore to take it under consideration.

Then at 7:20 this morning (also, a couple of days ago)  my phone rang. 7:20!! Kind of pissed me off because I had to get out of the shower to see if it was an emergency call or not and it seemed to be like it might have been from one of the hospital numbers (which it was) so I turned the water off and answered it. It was just some secretary from the kidney failure specialists office trying to confirm the husband's next appointment, but, you know they have to ask the patient's birthday "for verification" EVEN THOUGH THEY HAVE JUST CALLED ME ON MY PERSONAL PHONE NUMBER.  It drives me crazy... but anyways, she confirmed with me and then she asked my name and if this was a cell phone... I said the only number to call was my cell phone because my husband also has dementia so I am the only one who can make arrangements (now she knows my husband has kidney failure and dementia) and then she gets all personal, and she tells me how young he is to be so sick (DUH no kidding) and she actually asks if I am his sole caregiver. Really! Then she (keeping in mind we have never met or even seen each other- I do not know this woman) tells me that I need to give myself a break and take some time off. Hello? How weird is that? Also, I totally wonder if anyone is going to listen to what she said since those calls are recorded. Because the secretary got personal with me. At 7:20 in the AM, while I happened to be naked, wet, and dripping shampoo suds on my bathroom floor. Is it me? Is that not weird?

Overlooking the strangeness of getting so personal with a patient's wife that you've been asked to call to confirm an appointment with (because holy hell, how fucking over stepping is that?) I have now just heard twice in 12 hours (3 times in 36 hours)  that I need to give myself an actual vacation break, once from the hubs, once with some strange urgency from the editor and once from a complete stranger who I then went on to have a whole conversation about the blessed benefits of having a dog. (Thank god for sweet pea.) WEIRD!

So, I told the goddess about these three vacation prods all coming in within 2 days and she had some thoughts. First she definitely thought I should take some time for myself (as does everyone else in my life) and then she suggested a bunch of different types of get aways and then she also wondered if perhaps the husband wanting me to leave and go somewhere is his way of distancing me from his passing. OMG. Like how my dad hung on for 4 days until we all finally said we were going out to grab some dinner and he immediately left us.

So, I am preemptively accepting that he might need me to go somewhere else for him to pass and that if that happens then it is all for the best. Of course I am also convinced that I could think of thousands of ways he might go and he will come up with something I never saw coming... Listen, your girl here, is a control freak and I am making some serious strides over here trying to be all laid back like a genuine zen goddess. Let it go, let it go.... Now that I am thinking about it it's not gonna happen that way... or will he break a pattern? 

steroids are my friends

So. My day started with one of those terrifying situations any caregiver would find relatable. I was trying to get out early to walk sweet pea, and when I crossed past the hallway where the husband sleeps, I glanced over my shoulder and stoped in my tracks. The bathroom light was on. The bathroom doorway is right across from his bedroom doorway. But here is the thing, his walker was not outside the bathroom. I paused. I weighed the futility of scolding him for somehow managing his way into the bathroom without his walker. Yeah, I told myself. No use in wasting my breath. but wait, I did not hear a thing. He wasn't in the bathroom. I tip toed down the hall and saw what I dread. The handle support device thingie around the toilet was toppled over and there were blood smears on the tile. They led to the hallway and onto the carpet beside his bed. As I was realizing what had obviously happened he said "Hey." and scared the shit out of me. Turns out that some time in the wee hours of the morning he fell while standing to pee and crawled back to bed. So, I guess he did not bring his walker with him. I don't know how to make him try to protect himself. He skinned his knee. That was the blood I saw. I took care of his knee, got him up and did his morning cardiomems reading, then I weighed him and got him into his recliner for the day. I make him scrambled eggs and toast and only then did I head out the door with sweet pea.

We had a nice walk. I met up with assorted friends and then I came back for his visiting nurse appointment. They always ask if he has fallen. So I went right ahead and spilled the beans told the nurse what ever I learned from the context clues before she even asked. I could tell by her reaction that falls in the middle of the night were hum drum every day occurrences that she was totally used to hearing about. I'm really trying to wrap my head around my inability to keep him safe. I totally need to get past the part where when he eventually dies it can not possibly be something I could have prevented because he is on some sort of path that I have no control over. Some days it feels as if he is determined to hurt himself.

Then I checked his portal to see if the results from his PET scan were posted. It's not cancer, so good news there. I did not want to have to accept cancer again. Fucking cancer. I fucking hate cancer. A tad bit of bad news is that maybe there is some liver problems detected that we haven't had before. I'm not going to hyper focus on that all weekend (wink wink) while we wait  until Monday for the follow up appointment with the pulmonologist. She can explain it to me. Lord knows my report reading is not always 100% because when I read the X-ray report for his toe I thought it said that there was no bone infection detected but that they couldn't rule it out as being too early to tell. Then the doctor told me there was a small very early bone infection. So... faith in me right now: surprisingly on the low side.

Speaking of tests, I went to the orthopedist yesterday and he didn't see anything alarming on my xrays (disc compression and a little sprinkle of arthritis) so he gave me steroids and 

OH MY GOD

Now, I am really remembering how much I love taking steroids. It's been a long time. I may have gotten a few prescriptions over the past decade that I didn't take, but was instead comforted by the fact that I had a prescription of magic in the drawer that was there for me should the situation escalate. But this time I am in enough pain to take them and just like the last time I took them (12 years ago) I LOVE STEROIDS. OH MY GOD. It took a few doses to really kick in but then I could feel every single joint in my body loosening up and the general pain that I just live with day in and day out and don't even know I have because it is always freaking there melted away. I want all the steroids all of the time. It is going to be a great week no matter what happens. For the next week, I am super woman. I am going on a quest for something not toxic that gives this same effect. I need this level of pain relief in my life every day for the rest of my life. It has to be something I can stay awake when taking, (you know what I am saying?) something that is legal in all 50 states. But what? I don't know! The search begins tomorrow. I feel so freaking good right now. In my head I keep repeating STEROIDS ARE MY FRIENDS. How weird and creepy is that?