Well that was easier than expected

 I was all anxious and preparing to explain stuff and none of that anticipated hassle happened. 

The weather is oddly overcast. Temps are 'cooler' sort of but the overcast is that high flat whiteout cloud layer that kind of acts like a blanket keeping the heat in but the sun out, sort of. Radiant heat don'tcha know.

I didn't sleep very well, woke up almost every hour after not actually turning the light off around 1 am.  We both woke up rather late yesterday morning, I didn't roll over and sit up until 8:30 or so which is unusual since it's been 7 am for whatever reasons (mostly to pee and feed Rocky).

So, despite not having good solid sleep I'm okay for now. We got moving and ready to go way early for the appointment but I wanted to allow extra time for any issues and getting lost and such. On the way there, my phone rings and luckily I had pulled it out of my back pocket already, and it was the infusion center. Okay better answer that, while driving one handed and put on speaker phone. They were just checking to make sure I was coming in for my appointment in a half hour and I said yes, didn't check in online due to 'paywall' (didn't use that term but that's what came to mind). She said it's all good, don't have to pay up front just come on in and check in with the receptionist. Will do! I was expecting an hour for the infusion itself so packed two bottles of water, my knitting and ipad for entertainment. 

It was so much better than my previous experience with chemo. Turns out this center used to be where the outpatient building is where I had chemo 16 years ago. Because this is a combination facility for infusions, there are chemo patients for cancer or auto immune situations similar or worse than mine so masks are required when you go through the door. Totally get that and not a problem.  Wore one every day for three years for the pandemic at work, necessary and needed.

The nurse who was assigned to me was very good, got the IV set up in the back of my hand, hardly any issues with that and a small bore needle thankfully. The chair was very comfy and padded, could recline, had 'massage' and heat available .... which turned out to be hilarious. It's more a vibro massage, how do I know? I reached over the little two button pad for my cup of ginger ale and hit the button accidentally. Suddenly the chair starts vibrating and I was looking at Jon who saw this perplexed, almost panic/confused look on my face until I realized what had happened. He was trying so hard not to laugh when I explained. It really was hilarious and it happened twice! Oh and by the way, Schwepps is the ginger ale they had and I haven't had it in decades. There was no ginger in it at all. Seriously, I thought it used to have more but then I'm also used to Vernor's and C&B ginger beer. But no, this tasted more like someone forgot to add in the flavoring so it was just C02 water. 

Meanwhile... it was a nice corner cubicle so I had a window view on the third floor of the building, it'll be a different chair for each session most likely not a problem. Did some knitting, played on my ipad and scrolled on my phone and was done in about 40 minutes after they hooked me up. Another funny thing is Jon was so engrossed on his phone and trying not to be intrusive he didn't even notice when the nurse started my IV. About fifteen minutes after start I mentioned something to him and he said, 'so when do they start your thing?' Shake my head mentally, 'they already did' I pointed above and behind my head to the small drip bag that was about halfway finished and after finding it he said 'oh'. We then went into the 'supernatural observation' riff that we do when he misses something obvious.   

So my next appointment for infusion is in two weeks, same bat time, same bat channel. Just have to call about an hour ahead of time to let them know I'm on the way so they can call it up from supply and have it set and ready to go when I get there. She said a lot of what they use for other infusions is based on weight but not mine so they don't have to wait until I get there and do my vitals to put the request in.  Crossing fingers this treatment works for what's ailing me.

Oh and they validate parking as well, which turns out wasn't needed either. Got to the exit gate and started to put my ticket in and Jon said, 'the gates opened' oh... okay and off we went. And that was it. Decided to use the little bit of extra money that was left over for some In N Out and came home to eat. I honestly do not know why people are so loyal to that burger place. I think our burgers had been sitting on the sidelines for a while, I only had three small onion rings (could fit on my fingers as rings) on my burger  because I asked for light onion. Burger patties were disappointingly small, fries were almost cold... and it was after 2 pm. Left overs from lunch rush maybe?

That's it for today. Easier than I thought and hope the financial side of things works out in my favor. That's how most people want it right?

 

 

Another catch and relief

 Weather continues to be summer despite the calendar saying otherwise. We are staying cool and comfy indoors after a short-ish supply/grocery run. Thanks to another generous friend of course, no longer have just .10 in the bank and was able to get gas and enough 'vittles' to last us another few days (Costco gas is $5.29, up .10 from last week). 

Blogger is being stupid with google photos again so here's one of my favorite pictures of ducks.

I've mentioned how my provider group Sharp Health Care has an online check in for appointments. Up until now it's been great, do it every time when I'm messaged about it. This time is different for the infusion because in order to check in online, they want you to pay the 'estimated' copay right in the check in window. Nope, not happening, don't have the money so no early check in online. I will get there hopefully early enough to explain the situation and see what happens. Pack knitting and snacks for the hour long infusion and if it doesn't happen, head back home. Oddly enough it's in the same building as my oncology doctor so I'll bring the meds I can't take anymore with me and drop them off at her office. Hopefully.

Jon and I did our 'performative protesting' yesterday for the No Kings 3 rally in our neighborhood. It was blazing hot, there were thousands of people along the road in front of the major mall and everyone was having fun. We opted to not go downtown knowing it would be an absolute madhouse, Jon isn't comfortable in crowded spaces and we would have had to check our trolley cards. So we drove down to the large mall where things were happening and parked in first available slot, walked down the line of people  (on the parking lot side not the sidewalk) hung out for about a half hour waving our flags and whooping and hollering as people honked when they drove by, then Jon asked if I wanted to head home. I was trying to keep him shaded with an umbrella but clumsy me kept tapping him on the top of the head because my arm got tired. I could have stayed longer but felt it wasn't really necessary, he was getting hot and a bit frustrated so I said yeah, let's go. I'll get on my political soapbox one of these posts soon.  

So today we did the outing for foodstuffs and even had worked in a Costco pizza into the tiny budget so we had lunch with leftovers. Just chilling inside with AC and fan blasting watching the small puffy clouds drift by outside knowing it is 92 out there. 

 

 

 

Some progress and stuff

 (TL;DR  Boob MRI didn't happen, info sent to assistance office, stress ensues.10 cents left in the bank)

 Favorite picture of a rhododendron from my trip to Washington over 10 years ago. Because I need something pretty to look at.

I was supposed to have an MRI done on my left boob this morning, bright and early check in at 9:45 so wake up at 7. I had already done the online check in, filled out the MRI form about metal installed any implants and such a week ago.

 So here's how it went. I got there way too early (15 minutes before my check in time because I overestimated the amount of traffic at that hour) so had some time to sit and knit and wait. And wait. Finally called me in at 10:20 and got me changed into a double hospital gown and I waited in my skivvies, not even my glasses on, waiting for another ten minutes or so when a tech came back and double checked about my implant on the right and I told him yes, it's an expander and I had noted that on my pre check in form. He said yeah, I'm talking with my lead on that, sorry for the delay. He went away, waited another ten or so minutes and he cam back again, I said 'I have the little card with the info about it. So gave it to him and turns out, right there it says 'Not MRI compatible'. Like I had noted on the form.

Needless to say, they couldn't do the MRI because my expander has a small metal ring where they would do the saline injection for expanding.   Hence, hesitation/cancellation. Well, not cancellation because he said 'we'll have to get back to you and reschedule.' Um, pretty much not going to be a different answer until I get the expander out which may not happen for another two or three months. Honestly this was all because of a shadow that was on the left side last year and they wanted to check it again. Last year BEFORE I had the surgery. I've had lots of other things going on so memory was kind of muddy about the timing.

Anyway, had to get some last groceries to coast us to the end of the month on the way home. Picked up Jon and went to the store, total of four things on the list that were needed, total came to ten cents under what I had left in the bank. Talk about going broke on groceries. It was 1/2 gal of milk, loaf of bread, bag of tortilla chips, case of water and a 12 pack of cokes (Home Depot has them for $2 less than the grocery store). That was it and all totaled came to $26 and change. That's it for our money.

Now then, on to the info exchange. Called 'Jamie' the rep that contacted me, told her our situation in short, she understood and because this is strictly my bill and the fact that Jon didn't file his as there wasn't anything to claim or file, she's designating me as a single household and his income doesn't come into play. Got off the phone with her, found the documents needed on my computer (minus one, forgot to include 2024 tax return but just sent that off now).  She said sometimes it's six days, sometimes six weeks or so for them to make a determination on grants and assistance and I would have to make any payments on the treatment balance and then get reimbursed.  Which means they had better have a lower payment plan than the other account right now or get me reimbursed pronto.

So just a bit stressed out right now about all this as anyone should be. When you have no money to pay bills and they suggest a payment plan, they don't seem to be hearing the words the same way I am meaning them. Shall I pull out a list of all my bills and show the bottom line that may well be negative?

 I keep only considering my income in all this because I forget that Jon can contribute. He cancelled yet another entertainment channel that was the last holdout, Paramount+ because that has Star Trek on it. So he now has fewer bills than I do and has a larger check every month. Hoping that he remembers that I asked him not to spend money on other things going forward. He literally has more disposable income than I do so will be asking/reminding him I need help with the household bills other than rent.

More info when things happen. 

 

Minor (major?) panic about treatment

But first, the weather;

Still unseasonably warm but not heinous, didn't have to turn on the AC  until around 3 or so yesterday when it got up to 90 in the kitchen and I only had used the stove.  Kind of hazy and started out foggy this morning which is not surprising with damp nights and warm days. Hoping for the same situation today considering the cool start in the morning.

So I got a call from the infusion center to set up the start of my treatment for the colitis. Had a choice between Thursday this week or the 30th so I chose the 30th because I was not ready for that right now. It's not like a cancer treatment where there will be major side effects but will take about an hour. So that's okay, but the infusion center is over in Kearny Mesa across from the hospital. Bit of a drive and we'll see how that pans out.

Now the minor (major?) panic is, I got a message from them an hour or few later saying that the initial co-payment estimate is $1278.66. You can bet I messaged back and said that I have no means to pay that estimate or any cost on my fixed income. It's a Part B schedule drug and therefore is not covered by Medicaid Part D (my guess). So if they can't figure out a way of getting that cost down to near zero, the doctor and I will have to figure out something else to do for my Colitis/Crohn's situation.  I have until the 30th for my first appointment so will see what happens between now and then. 

Sheesh!

I've got my left breast MRI tomorrow morning no big deal there, I know that's covered. Need a few things at the store and we're coasting to the end of the month. I try and keep my brain off the scary real life stuff playing games on my ipad and knitting. Not much else to do really, can't drive anywhere with limited gas and then next month bills hit almost immediately and won't be able to do anything but doctor appointments and groceries. If gas is over $5 that's a huge chunk of money that's absolutely necessary.  We only shop at Costco for gas and that's usually a tad cheaper than anywhere else like 7-11 or Arco. There's even a difference between Santee and La Mesa stores for price and sometimes it's as  much as .50. 

So we won't be getting much in the way of extras as I've said before (because that's always on my mind lately so sorry for the repetition).  Just when you think you're doing okay coasting along and seeing the end of the tunnel, you hear a train horn and can't tell if it's in front or behind you. No matter what,  you're in the way.

So that's my update for today, garden is growing, knitting is going, weather is happening. Finances are in the toilet.

 

 

 

 

 

 

 

Frustration, fits and starts.

 So things started out with fitful sleep punctuated by right leg cramps most of the night. Waking up every hour or two to pee to fight off the cramps or just waking up and not getting back to sleep. Really need to find a way to get some good sleep. 

 That was yesterday. One of the reasons I suspect I did not sleep well, since 80-81 is good for just sitting around but not for sleeping. We can't leave the bedroom door open all night due to Rocky, because he would have to be in the bathroom all night and that is no way to treat a cat. So the last few hours of sleep the door was open when he decides 3 or 4 am is the time to pester us.

So I woke up around 8:30 or 9 kind of grouchy as one would be then launched into eating something. Had a bowl of cereal and took my pills then realized I should probably eat something more. We had two eggs left so pulled one out and fried it up to perfection, popped two pieces of bread in the toaster, put may on the bread (discovered that was more tasty than butter). In the process of using the spatula to move the egg from the frying pan turning around to put the egg on the toast it slid off and splatted on the floor in the most grody spot in the kitchen. Curse word loudly spoken which made Jon go on alert. I explained what happened and he commiserated with me on the loss. I cleaned it up (the yolk wasn't runny thankfully) and then fried another egg. So that got done and I rewarded myself with the last coke in the fridge knowing we were going to go out and get more.

Another instance of friends and family coming through for me with just enough to get a short list of groceries we needed. I whined about not having 'fun stuff' to eat but had plenty of food to 'make'. Out of cokes as well but checked HD and they have it for $2 less than the grocery store... score! Jon said he had enough to cover that so we stopped there first before going to the store.

 Now, second round of frustration..at the store. Crowd wasn't bad, I had my list, we got everything together then realized that I may have changed the pin for my paypal card where the money had been deposited. Bad, very bad, not good. Sure enough got to the register with groceries of:

1 doz eggs, ½ gal milk, 3 cans cat food, 1 bag tortilla chips, 1 container Chocolate Ganache ice cream (for me), 1 box ice cream sandwiches (for Jon), 1 'to go' box of fried chicken. Total for all that was $26 and change about what I had calculated and well within budget to make sure we had money next week for more food incidentals. I really wanted to get a gallon of milk instead of the half gallon but Jon had grabbed it and wasn't in a mood to discuss.

Five tries and the pin I thought was the same one as I always usedwasn't working. FUDGE!! (to put it politely) Sigh heavily, call over the attendant that we are friendly with and explain the situation... Jon then proceeds to go put all the groceries back when the last try didn't work and I just had her cancel the transaction. She was kind of amazed and I told her there was ice cream, eggs and milk. Not taking any chances on that for anyone else that wanted it. So about five or so minutes later he comes back and we head home. I don't remember consciously changing the pin when I got the new card, I try not to change those kinds of things due to being forgetful and it's a debit card so I can't bypass the number option.

I got on the computer and just did an instant transfer over which I should have done in the first place but also 'changed' my 'mobile pin' which I hope is the same as my card pin. If not, will have to figure that out another time. Only lost .88 and had more than that in my bank account so no money really lost. Decided to cook lunch instead of heading back out. No pictures (because we were hungry) but it was DELICIOUS! Will post the recipe next time but 'Sheet pan Greek chicken and gold potatoes' is what I'm calling it.

After lunch, decided to go back out, get what we needed and come back home so here we are.  Oh, it got up to about 96 today but when we went out the second time it was 93. Surprisingly we didn't melt. I am however sitting at my desk without pants because Jon will be doing laundry in a little while and they needed washing. Can usually tell due to the amount of room not just accumulation of smudges and schmutz. Oh and when I went to get the Resmed thing she weighed me and I am down another 4 pounds. She said, 'well that's a good thing isn't it?' I said under other circumstances yes, but not been trying to lose weight. 

So that's my day today. Started out cranky, had some problems, cooked some good food, getting laundry done as well. Not too bad for a Saturday honestly, surprisingly HD was even easy and we parked almost right up close to the building.  

Sunset last night through the trees and suburban fences. 
 

 

Non panic update

 The weather is still fiendishly hot in the high 90's today, had to go across town for an appointment then quick stop at the store and home again. Today's visit was... less than exciting though another impressive show of how far technology has come.

Can't see them well but there are at least three crows in that tree that tried to drop branches on Rocky and myself when we were walking on the lawn. 

 A bit of backtracking though, both Jon and I slept in late, did not sleep well for myself so didn't wake up until around 9 after fits and starts and one foot cramping. Need to figure out what's triggering that for sure, was fine for a few weeks then it suddenly came on again. Anyway, woke up this morning and saw an email from something called ResMed Night Owl something and since I was still groggy and thinking it was spam I marked it as such then blocked the sender as well. I got some other email from Cricket that was spam so thought I was getting something else I didn't sign up for. 

So today was the Home Sleep Apnea Test consult to pick up the 'equipment' I would need in the Pulmonary department. Turns out, the nurse who saw me, had sent me that email for the app to download for the sleep test. DOH! She said don't worry about it, not the first or last time and she printed up the information and code I would need to activate the app. 

 

So yeah... an app and a tiny finger sensor I wear when I go to bed. The ResMed NightOwl....just what the email was about. The oval piece is no bigger than my fingernail and the white bands are as long as my finger. Those are to keep it on my finger overnight like a bandaid strip. If there were serious sleep apnea problems picked up by this then they would likely refer to a lab monitoring situation. Like the heart monitor it will take about two weeks for the receiving lab to check the results and get back to my doctor. Still waiting for the results on the heart test as well.

Didn't cost me anything, there was a form she had me sign but she crossed off the cost of keeping it longer than needed. She said I get to keep this (why I have no idea maybe for self monitoring??) so there was no cost. Like the heart monitor it collects the data and registers it on the app for any activity. If it falls off during the night or it doesn't register for some reason, in the morning when I check the app it will say so and I can do the test again the next night. There are 10 bands included in the pack but they only want me to do this for one night. Really. It took me longer to drive to the appointment than it took for her to explain how to use it. I have one other appointment next week but it's really close to home in Santee so no worries about needing gas until end of the month. But that's another added cost that's going to be higher than usual. I have four appointments almost all across town next month.

Oh, I finally just clicked on the AMR link to set up a payment plan, lowest they had was $50 a month for 5 months. But apparently there's no pressure, if I need to pause it or whatever just have to go to the website and click on a few things. I set that up for the first of the month and may well do that first payment then see about an option for assistance or whatever.  Because I have two other medical bills one being paid on and the other still nagging me for $250.  

Week and a half to the end of the month. We have makings for food, Jon had some money left so we were able to pick up milk, bread, cereal, tortilla chips and 2 jalapeno so I can make some salsa. Made some chicken thighs in the frying pan today with spicy gravy. I combined what was left of my taco and rotisserie chicken seasoning on the chicken then used the pan juices and some butter to make the gravy. White rice and refried beans and we 'ate like kings' as he says. 

Oh yeah, the refried beans, from scratch, in the slow cooker (this is a before picture when I just started them). Cooked for 4 hours on high, stirring a few times, turned it to low for about four more hours so they were still cooking by midnight. Tried to mash them a bit but some of the beans were still a bit toooo 'al dente'. They'll be okay as they get reheated in the future. We have enough to feed a full on family of six or eight. If I still had that smaller crock pot would have used that but followed the directions for army sized portion using 2 pounds of beans. They turned out okay but should have soaked the beans overnight first. Definitely not restaurant quality, a little burned tasting, seasoned like my usual method so Jon likes them. That's good because I bet he's going to be tired of them after a week. But then he's part Puerto Rican, beans and rice are everyday foods.

We have food to fix, running out of ideas and 'incidental' foodstuffs though. I tried making some shrimp salad sandwiches yesterday, Jon was not a fan and just had the beans, rice, taco meat with lettuce tomato and onion on top. I told him about the shrimp and he did have some but turned down seconds. Oh well. It was okay but I didn't have any dill fresh or dried but it was edible. Had mine on a toasted hamburger bun with some of the last white sauce on the bun with lettuce, tomato and onion. Used the last flour tortilla in a makeshift burrito using the other sides on hand.  

Oh speaking of makeshift, I made a grilled cheese with pepperoncini sandwich for a snack last night. It wasn't too bad but could have used some shredded meat or maybe beef bologna. So I put mayo on the inside sides of the bread, laid a piece of American cheese on either side, added the pepperoncini slices then closed it up. Buttered the outside of the bread (one side at a time) sprinkled with some garlic powder. Flip that into the pan, butter and garlic powder on the other side and brown to perfection.  It wasn't half bad really. The warmed peppers reminded me of a Quiznos sandwich almost, so many good places to eat that are gone now. Oh well.

One last picture as a personal note on my mental state of the world right now. I want to live long enough to see certain people pay for the damage they've done to the world and our country but am afraid to live that long as well. 

 

 

 

 

All good now, as usual.

 'When in panic when in doubt, run in circles, scream and shout'. 

Yep, luckily Amber (congrats to her and Wellman for being together for 10 years), was able to get me the money to cover SDGE and everything cleared just fine this morning. Had just enough money left in the bank to resupply on a few things. Now just have to coast for the next two weeks.

 I did mention to Jon as we were getting ready for bed the other night that we can't have any extraneous expenses anymore. I have essentially $90 getting taken out for one medical and still have to figure out the payments for AMR and the other medical. So I told him as gently as I could that with the extra bills coming out of my account we can't spend much on 'extras'. He felt bad and understood so hoping he remembers my caution when we get paid again. I'll have to tell him again in a week that we can only have a cap of $40 for extraneous food outings. It's a hard thing for us to do because there's so much good food out there and for so long we were able to just up and go get it because we had the budget. At least the first year or two we were together (which seems like forever ago). It takes a lot of energy and time for me to fix food and I can't cook great Mexican food or have the food budget to make a great sub sandwich. It's cheaper to go out and get it, just has to come out of a different budget unfortunately. 

I've got two more doctor/medical appointments this month, one this week over at a new facility in Kearny Mesa for the home sleep test (still trying to see if that has an up front fee or not), the other is the breast MRI ten minutes away in Santee the following week and then that's got me tapped out for gas.  

It's going to be hot again for the next week. We survived for two days without the AC because it was reasonable temps but today it was 89 by noon and we closed up before dipping out to the store quickly. Fixed our midday meal (penne pasta with meat marinara using a jar of Ragu for a base) and are settled in for the day. 

Still worried about Devon not answering back, I know both of them were having health issues so hope everything is okay with them. I'm still a mom, what can I say.

Other than that, so far so good. Side effects of prednisone are negligible compared to last time. Had to look up directions on how many to take when and how long and noted it in my phone for reference. Because... old age and chemo do things to the memory.

So we're buttoned up and it's half way through the day (at least the daylight portion, it's only 3:40 as we got a late start on the day). I didn't sleep well, woke up about four or five times to go pee overnight. Rocky wants to go out but it is currently 95 outside and that is not happening right now. Won't cool down sufficiently until sunset. All I can think of is Olaf from Frozen singing about how great Summer would be. Oh side note, they have made a full on, life size (actual character size not people size) animatronic Olaf that walks and moves and reacts. Apparently it's only in the Paris Disneyland from the videos I saw. Eyes blink and move, one of the arms moves, head moves and body bobs up and down and walks with the short stubby legs. He's adorable and amazing technology!

So my week in a nutshell, up and down all around.  Yippee.