Ups and downss

 Got another good nights sleep, mostly. Realized going to sleep last night I had all the fixings for a BLT and Avocado sandwich! I woke with enough energy to do just that and it was delicious! Had to toss most of the head of lettuce I bought over a week ago because I had smashed it to remove the core so most of the outer leaves on the bottom were soggy. The inner areas were still okay thankfully so still have plenty of lettuce. 

The happy tall weather tree and the current skies compared to other parts of the country. We are at the tail end of the long storm stretching across the southwest to northeast. Next weekend is going to be in the low 80's, here comes spring and summer!

So back to today, fixed my sandwich, it was delicious and then took about a fifteen minute or so breather then got my shower. Probably longer since Jon got in before I did so more like a half hour. But still had enough energy to do that. After my shower, felt refreshed but needed to take another half hour or forty minute break sitting on the bed, play games and knitted some. Heard Jon wake a bit so went out and by this time it was close to noon and started fixing sort of shrimp scampi. Used the wrong noodles, pulled out the egg noodles instead of the linguini so way more noodles than shrimp. 

After food it was nap time. I dislike taking naps even if I'm sick, it's disorienting and not as comfortable having to wear clothes. Rocky can't figure out what to do either because he usually lays in my spot if I'm awake and if he wants to take a nap, regardless he wants to lay there. So he tried to lay on my chest but that got to be uncomfortable and had to push him off finally and half roll over. He moved off to another spot and I finally was able to sleep around 3:30.

Woke around 4 with the sound of multiple planes outside, Jon shifting around in the kitchen and other noises outside. I'm still a bit groggy at almost 6 now but got a snack of cheese and crackers, peanut butter on crackers and two slices of orange chocolate. Rocky is asleep on my side of the bed of course.

So it's a good day overall for energy and food, pulled down some chicken breasts to do something tomorrow. Need to go to the store tomorrow, get a blood draw on Tuesday, and also see if they still want an EKG as well given my newer issues. Will have to message doctor(s) tomorrow, but might as well just ask at the desk when we go over to Grossmont on Tuesday for the blood draw if not, all good. I just know two doctors need blood samples and that's fine.

Reasonable day today, just want things to get better sooner rather than later. Wishful thinking as any chronically ill person will do. I have to keep that in my mindset now as this isn't going away any time soon, some will, some won't. It's the way of my life now and have to deal with it.

 

 

Another slow day

 Cloudy and overcast, cold and wish it was warmer. Didn't sleep as well as I had hoped but felt like I got some rest at least. Managed a shower and needed to sit a few minutes to rest from that. A few hiccups in the heart beat still and am monitoring it. Feeling a bit slow and low energy of course so have to really not be as active. I managed to fix lunch, chicken thighs baked in the oven so low key there, but did take Rocky down for grass time, checked the garden and then came back up. Seems like even that much activity kind of slows me down. Jon didn't sleep well either, I know he woke up coughing and sputtering at one point and likely didn't sleep heavily as he usually does. 

That is not good and all the doctors have said to watch for irregular heartbeat and head to the ED if it happens. They think I have the means and money to do that and yes I agree it should be imperative but this is the medical dilemma of our times. Poor people can't afford to stay healthy and can't risk getting worse. Knowing what to look for and worsening symptoms is the best I can do.

I also managed to pick up my knitting and actually work on it for the first time in weeks, if not months. The sock yarns I was gifted are continuing to stare at me from the container next to the bed so it's my motivation to get the grey socks finished to work on a set of gloves. Still have so many other things to work on and none of it will be finished in my lifetime.

 The case worker has a list of questions to ask patients to check on their mental health, safety and comfort at home. One of the ever present ones is about depression and thoughts of suicide. I told her I've been depressed in the past, long past, but knew the source of it and worked through it on my own. Depression is part of several menopause situations so it's another case of, this is something to look for. One of the things that comes to mind is an old Babylon 5 scene where Sheridan is asked, 'you say you have something to die for, but do you have something to live for?'. That is always on my mind when someone asks about suicide thoughts and that sort of thing. 

I have always been on the sort of 'Pollyanna' spectrum of living, seeing the best in people or at lest hoping they are good like I am. So I've not had a mean bone in my body for most of my life, there has been too much to live for and people that still need me around for me to think of removing myself from their lives. Some people call it cowardly but in fact, it takes bravery and extreme desperation of not being able to move forward any longer in whatever situation is existing. I always try to look ahead and know that some situations are strictly my own doing and if I got here myself then I can figure out how to get myself out. Thinking ahead to plan something, not something I've been able to do consistentlybut that is my mental situation all my life.  I cannot imagine, for myself at lest, deciding that I want to remove my presence from my situation. I honestly could only see it in a dire, end of life crisis situation. I have Jon, and Rocky, my kids, my close friends, I've touched so many lives I cannot ever wish to purposely cause them grief and pain because of my inability to tolerate minor or major inconveniences and situations. 

Now I've gotten crankier and less tolerant of people in my old age and that goes for Rocky as well. He bites me out of frustration and if I'm not in a good mood I will let him know I do not tolerate being attacked for no good reason. Same goes with people. Jon will not hesitate to pull his knife if there is a dangerous situation, that's the 'street dog' in him but if it came down to me, I will fight to my best ability to let someone know I have a little more fight in me than is healthy. I do not like confrontation at all, never have, never will so most cases I will try to avoid it. I tend to fly off the handle and say stupid things instead of stopping and thinking through a response rather than reacting. I have stared a few people down but not in a seriously dangerous situation.  

So I go about my days, when shopping tend to avoid too many people in an aisle that I would have to navigate around, find the shortest route between two points or a register line. Sit at home and do ipad coloring and games to try and keep my brain a bit active. I am getting old, not as healthy and don't have as much spunk and smarts as I used to I wish I had the smarts and spunk of some people.  

As far as life is concerned I wish mine was better but have to make do with what I have to the best of my ability. Learn to ask for help when I usually could handle it on my own or let others volunteer to help. New limitations are hard to deal with.

What do you have worth living for is a much better question. 

Today was busy and then not so good

I woke up after a very good nights sleep. Woke around 2:30 am went to bathroom, and all day had only gone 3 times, loose bms are fewer now which is odd, but good. Woke up around 5 something rolled over but felt so relaxed I just lay for a little while but was able to go back to sleep. Finally woke up before alarm went off and was amazed at how well rested I felt. I had energy, felt rested, it was amazing to have that feeling for the first time in probably a year. 

Got small breakfast, two pieces of toast and one of the protein drinks with my pills then relaxed in bed for a few playing my games and then realized I was really slimey. I had night sweats at least twice  or three times so had enough energy and got my shower first before Jon did.

We got some money to do a little needful shopping.  

Energy ran a little low but sat and played my games and relaxed. Jon got ready and then we headed out around 11 to do shopping. By the time we got done with Costco and then Food 4 Less I was feeling very low energy and we decided to go home and I fixed grilled cheese sandwiches and tomato soup. It didn't taste like I expected. The soup was very sweet and I hardly put any baking soda in at all, used milk as usual, added in some dried onion and garlic powder, a little salt and that was it. Jon even noticed the soup was sweet so it wasn't my funky tastebuds.  By then though, I was feeling really draggy and suddenly noticed my heart was fluttering a little. Ruh roh.

I drank some water, checked my pulse and indeed it was fluttering occasionally. Doing internal check I felt that I needed a nap and rest and it would correct itself. I was not going to run to the ED across town because Amber is busy and I can't afford another trip, by the time they would see me the symptoms would likely be even more irregular and they wouldn't catch anything. I haven't missed any of my pills at all so this was a case of me over extending myself when I thought I felt good enough. 

So after sitting up in bed propped up with pillows for about an hour, I may have dozed off a bit I felt much better by the time Rocky started pestering me and laying on my stomach. Checked pulse and it was much more steady now. As I figured. Feel like I did after coming home last week but know that with the meds and eating I'll be much better tomorrow. 

Rested a little more, then fixed some Ritz crackers and cheese, tasted fine, then had a craving for apples and yogurt so fixed half an apple and hope the other half will not be too brown by tomorrow morning. Tasted yummy as it should and so here I am. Checking my pulse about ever 15 minutes or so, feel like I'll get a good nights sleep and will not be quite as active tomorrow for sure.

I have an  appointment with Dr Keller for March 10 and they have me on the cancellation list if a slot opens up. It's listed as a 'consultation' appointment because that's what it is. Have a tentative appointment with Moeller (oncologist) as well but they haven't gotten back to me after I replied yesterday so will see what happens next week.

So that's what's happening today, over exerted myself for sure and will have to keep on the down low unless absolutely necessary to go out. Likely by Sunday and definitely a trip to Grossmont for blood test on Tuesday. Definitely still tired right now but it's only 7 pm, waaayyy tooo early for going to bed. 

Might have some more cheese and crackers.

 

 

 

Quick late night update

 GI Doctor Keller finally called, he's a fast talker with lots of information. Basically from all the biopsies they did it's a good chance it is colitis with a probable chance of Crohn's. Here are issues that he has to deal with:

First, I'm dealing with high liver enzymes and he needs to see other numbers as well for his continuing diagnosis development.  He named off one treatment for Crohn's that is an infusion situation that is forever. Every two weeks the first four treatments (I think?) and then after that once a month (I think) I should have written this down after  I got off the phone. He mentioned a few other things and then I told him what I'm dealing with, including the liver enzymes and the A-Fib situation which I'm going in every week for the next few weeks to check levels. Told him what meds they put me on, blood thinner and three others. Then he mentioned other treatments like steroids and I had to double back and mention oh by the way I'm on Prednisone as well. He laughed and said that's another complication because that is used for treating Crohn's also. But he doesn't really have a solid solid diagnosis for Crohn's and would like to use the other treatment when he does but since that is a long term permanent situation he doesn't want to start that. He wants to do another fecal test to check for the calprotectin to see if that has changed from the ultra high number of 652 down a few hundred. To him the situation is not cut and dried considering everything else going on, technically I can't be off the chemo pills forever but if that's causing issues there may not be any choice. But everything hinges on getting my system getting balanced again and back on track which may not ever happen. I told him as much and he agreed and noted that I'm more on top of things than others and have a good attitude. His nurse will call in the next day or so if an opening comes up to fit me in for an office visit. He said he was booked months out (which explains why it took so long for him to call me). Will have my headset on and ready for phone call if I'm out and about.

Oh my case worker also called back and finished our more in depth questioning about how I'm feeling,  mentally and physically, all the things they need to know as a liaison to the medical team. So I've got all the various specialists and people on the case. I did tell her I was concerned with the medical bill and whether I had told them the correct billing originally and she didn't have any answer for that but it was on my mind as a concern. They ask about whether there's food or housing insecurity and with that I went into the long description of how my situation doesn't fit into one column or category. We have 'food' in the house but it's mostly 'food to make meals' rather than quick snacks or healthy things to eat. She tried to interject with the food pantry options and I went into my minor rant about our experience with that as well as the Helping Seniors meals that were a tragic failure. Told her I prefer to cook fresh food and have leftovers and the meals they have are not big enough for either of us and most of it is inedible. So hopefully she has a better idea of my 'unique' situation that is more complicated than usual. 

So that's the update for now. Oh, sad news, that little rose seedling, I was trying to take a picture of it and my hand shook rolled the little pod around and busted it in half. 😭😭 I have five other pods with seeds in them so am hoping they will sprout. Really really disappointed and upset with myself about that. 

Anyway, it's also drizzling rain and cloudy here. Going to do a little shopping tomorrow for needful things and then maybe fix some chicken thighs and rice. See what my energy is like. Might end up having sandwich from Jersey Mikes. 

All done. Hoping for a better nights sleep tonight.

 

Next development.

 Breathing is better today, not sure if that's due to dropping off two of my meds or picking up on prednisone but I'm only having to clear my throat today and other than coughing early morning, I'm doing okay. 

Cardiology and my oncologist both messaged to set up appointments so those are all set for next month. Primary doctor messaged and said my magnesium was fine, which was the other one they needed to monitor and reiterated dropping my pravastatin as well as the kisqali.  I took the statin out of my pill case yesterday so I didn't forget.

A few side effects of the prednisone is increased appetite, which is good, water weight gain, not so good but fixable down the road, and insomnia. Which is why she had me take it in the morning with food so my sleep isn't disturbed anymore than it is now. If the kisqali is the root of all my problems, coughing and chest tightness as well as all the other things, I will be relieved. More than likely the prednisone is helping with my cough due to it being a steroid. It's a one shot prescription which is okay and will see what happens when I don't take it anymore. 

Two other things that are not health related, I was able to fix a double batch of beef and noodles, had a medium size bowl because I was hungry. So that's a bonus and then this little development:

 That is a tiny rose seedling! I don't remember which rose I took it from, probably the random pink one near the garden. But it is a first for me growing an actual rose from a seed! I am going to keep an eye on it for sure and make sure it doesn't go dry and survives. Many months to go before it will be big enough to replant. When I saw it starting to sprout I thought, 'that is too sturdy to be vegetable seed but I could be wrong'. Well I was wrong, yay!!! The thing about growing a rose from seed is it is open pollinated, therefore propagation laws do not apply for patented plants. I sincerely doubt this variety is a recent one but doesn't matter. If it grows true to parent that will be cool but it's going to be a few years (if it survives) before it will be ready to bloom.

Good side effect of new phone number, spam calls are reduced to zero so far. Good luck getting through on that other number suckers.

Despite the caution that prednisone causes insomnia, I might go try and take a nap.  

 

On to health update

 Apparently I am not reacting well to my chemo tablets, got complete blood panel done today at doctor visit and liver number was WAY too high.  It was slightly elevated in the hospital but they didn't find any other damage or indicators. So doctor called after getting the results and said to stop the kisqali and pravastatin ( cholesterol med) got me a prescription for prednisone and will check my blood again in a week.

I guess that's one explanation why things have been going so wonky. My glucose is consistently high as well, fasting or not fasting but that hasn't been mentioned yet. She put in a referral for the GI doctor and a nudge to the cardio doctor as well. Got my new phone number dialed into my accounts other than the grocery store which is a pain to set up so not going to bother.

We came home from the doctor because Jon needed to eat something and I needed to use the bathroom. After that I was Hungry which was a very good sign because I hadn't been that hungry in a long time. Had a bowl of leftover chicken and pasta and apple bits in yogurt then got sleepy and laid down at 3. I passed out. Woke up vaguely once when a notification went off but went right back to sleep. Didn't really wake up until doctor called at 4:30. 

So yeah, supposed to be eating high potassium foods which I have very little of in the house, very little money and new money won't be coming for another 10 days minimum. Running low on toilet paper again as well. Tried to use my OTC benefits card at CVS but apparently it's not recognizing it for the morning/bedtime pill minder and generic mucinex I needed. It's supposed to work on things like oral care (but maybe not regular toothpaste) and pill minders. Just downloaded the complete list and it is not as many items as before. Very specific items in a particular category, not many generics so it is a less than helpful benefit this time around. So I have to write down the EXACT product name for what I want or pay out of pocket.

I know so many others have constant health issues that are part of their life forever, this is new to me and I'm hoping that in another year I will be much healthier and stronger. 15 years ago I told a doctor that I have been basically healthy and good all my life, so when something happens, it's catastrophic. So I'm a bit lower energy today and that is explained with wonky numbers again. Right now I'm really cold and have my hoodie and gloves on with a double shirt layer on underneath. It's not my imagination considering it is 60 degrees outside and will get down into the 40's tonight. Been wearing socks to bed and finally convinced Jon to wash the brushed cotton sheets that had been in the hamper for over a year, What a difference!

So steroids for a month, blood tests every week, dr appointments coming up next month and after and hopefully some improvement. I just want to eat 'normal' food! Rolled tacos, regular beef tacos.. something anything with flavors.

okay it is now 7:15 and will go see what else I can do before bedtime.

 

 

Small hiccup fixed

 What Miguel did not explain was that he wrote down the new username and password information on a sticky note for me. I saw him write it down, bright pink sticky note on my phone box, but he didn't point out what the information was. I thought it was for his information during set up, that was a piece of crucial information what would have saved me a couple of hours of frustration.  So it's all copacetic now but still need to get logged in to various apps on the phone. Not a big deal in comparison.

Other than that, it's a beautiful day outside, but I'm not feeling up to snuff today.  I'm still eating well but not as enthusiastically as before. Going to keep up on electrolytes of course and water, going to take it easy today and be mostly sedentary. Heart is still steady but feeling just a bit off and will keep on top of that. 

When they're doing paperwork in the hospital some of the questions have to do with your personal safety and situation. One of them is 'are you experiencing food or housing insecurity?'. I have to say no because we have food in the house, what we don't have is the right kind of food that is suggested by the doctors. They seem to think we can just go to the store and stock up on good salmon and fresh fish, fresh leafy greens and vegetables and all that. No, we can't. Won't have an opportunity to do that until end of the month. It's never a simple yes/no answer in my situations. Will see what my doctor says tomorrow, let her know my new phone number is on my account now. No one has called or even messaged through the app so not sure what's going on but it's probably pending seeing her tomorrow.

TMI but had a really bad fail getting to the bathroom in time yesterday and Jon being the person he is cleaned up the bathroom. It was first time for a sudden run,  didn't even happen when I was doing colonoscopy prep. Hoping getting some metamucil or something will help with that. 

Anyway, going to relax, might even try and do some knitting. Trying to keep track of how I'm feeling for sure.