Change of diet for Joon weather is holding steady

 No more rain, typical San Diego spring/summer now. Good for gardening and walking, nothing too hot or cold, some breezy wind and pale, powder blue skies. 

 Reusing a picture from a week ago, purple trumpet vine on the pergola lawn area. One of my favorite flowers is all.

As for Jon... he had an appointment with our regular doctor, the blood and pee test was mixed. His glucose levels are trending a bit too high and she asked what he was eating. We have a really good rapport with her so when he told her he has two or three sodas a day she gasped and said 'three!?' I should have gone in with him but felt like he could handle it. So good thing is, no sign of diabetes, his eyes and urine not showing anything. (wonder why I haven't been asked for a pee test?). So after giving him a talk about reducing carbs (bread among other things) she said ice cream was actually healthier than bread or even the 'high fiber' cereals.  So along with the diet guidelines and letting her know that we do not have a budget for really eating healthy to her levels, he got a prescription for metformin. I recognized the name and let him know thee side effects. He's supposed to take it with food so he starts that tomorrow morning with breakfast, one twice a day with food. Next appointment with her is August and that's it. So, did that stop him from having a soda and two ice cream sandwiches after lunch today? Nope. I've been trying to get him to cut back on sweets like that for a while and he ducks his head apologetically and goes right back to doing it. At least he promised to not have more than one soda a day. 

Another interesting thing she said was for pain relief, use only Tylenol. He asked why the generics aren't as good when the ingredients are the same. She said on a scale of 1 - 10 actual Tylenol is a 10 for efficacy and the generics are maybe 4-5. Who knew? Well actually when dealing with any 'brand' you have good generics and some not so good. Thought generics were basically the same for medicines, otherwise why would they substitute them in prescriptions?

As for me, going through a really bad stretch of hemorrhoids. Not going into tmi but at least one day it was up there in pain level with giving birth. Uncomfortable to sit in my desk chair and forgot to look for a donut cushion. Best I can do is use some witch hazel pads right now (thank you Sharp for the OTC benefits card!) and hoping it tames down a bit in the next few days. I also discovered a really bizarre nerve pain connection from my butt to my kneecap, 'nuf said. Oh, I also found out that the treatment I'm getting for the colitis, has a very, very long ramp up to being effective. Tops out at 14 weeks. So doing the math, that's not for another three treatments, around July. Because after my next one in three and a half weeks, the next after that is 8 weeks for the duration. Wish doctor had told me about that aspect of it. I am not looking forward to having this kind of problem for that long. The information I read said 12-14 weeks, but considering it is a 'biologic' rather than 'chemical' I can see why. Working with the difference between organic and non-organic pesticides and fertilizers... SIGH. Will have to wait and see what happens.

 I have my echo stress test tomorrow which I hope I can walk enough for them. Slight incline on a treadmill which I've never used before. This will be fun I'm sure. I called radiology and cancelled my MRI appointment and told the person why which they were kind of shocked no one asked if I had anything metal. I probably answered no metal because they don't include anything like that on the check list. So that's taken care of at least. 

So medically we're doing as best we can, bills are all paid up and just coasting on what we have at this point. Halfway through the month and surviving. Like we do. 

I got out to the garden a few days ago and discovered, the area had been completely cleaned of all extraneous weeds. Everything. Completely denuded. I allowed some of them to grow for the benefit of keeping the area cool and encourage various critters. You can see the difference (Rocky outing photo) in the distance how the green had just taken over that corner. I don't know who complained or figured it needed to go but oh well. It is now a bare, dry and dusty pathway that needs bark or gravel or something. Planted all my peppers in the raised bed, two cucumbers waiting in their pods to get big enough. Pulled up the last potato plant and had only four spuds, two might be big enough to eat. Oh well, although I did discover that Yukon Gold are more horizontal growing and I could probably grow them just fine in the crate I have waiting around. 

Cooking I'm still doing. Made some delicious chicken and bow tie pasta today using Olive Garden Italian dressing to marinade chicken thighs. Baked them in the oven to perfection and then coated the cooked pasta with butter, parmesan, garlic, dried parsley a little salt and pepper and done. Hoping to do some chicken tacos of some sort tomorrow with breasts. Might switch up with some hamburger on Sunday... dang, tomorrow I have my appointment. Not sure about cooking anything, oh well, leftovers/ramen/soup it may be. 

And that's our life this week. I knew a diet change was coming but it's not so heinous. I'm a bit anxious about another rent hike that my second sight is telling me is around the corner for some reason.

 

 

 

 

Bit of a ramble post, second infusion and rain

Bit of a ramble, second infusion and fun weather. 

 Not much rain on the ground unless it passed over our neighborhood while we were at my appointment. It's been cloudy and windy for two days and it's wonderful. Had to actually put the extra blanket on the bed last night and the night before. We drove through a cloudburst on the way to the appointment so at least my car got rinsed off and blown dry at 60 mph and then high speed dry at 70.

The sky is about two shades lighter than the photo, not sure how to get the color to match life but oh well. Big puffy clouds in blue skies is very picturesque for sure. Probably the last 'storm' we'll be having for the spring I bet.

Had my second infusion today, nothing unusual though they did call me about two hours before to ask if I was going to be there and I said of course, and was going to call in an hour. She said that's why I'm calling... cheerily said thank you and she said see you when you get here and we hung up. Well, turns out they still didn't have my meds ready when I got there. Checked in on time, called me and got my vitals and in the chair in about 5 minutes and then had to wait another twenty for them to bring my meds. Different chair, same nurse turns out. I had my knitting on my lap and she started getting my IV set up looked at the knitting, looked at Jon and I recognized her. She laughed and said you've gotten a lot done on the sweater, I had to admit, not really.

I had blood work done when I saw cardiologist on Friday, got the results the next day and two of my doctors sent messages soon after. Everything but cholesterol is great, according to my primary it's 'trending high' (only cholesterol and triglyerides and two others were 'high normal') and was considering changing to a different statin. So other than that my system seems to be totally ignoring the treatment. Everything went back to the way it was after the initial week of my first one and this week it feels worse. I'm concerned that this is not working and won't have a new treatment until I see Keller in July.  A friend mentioned that she had a friend that had this same problem and went through three or four different treatments that didn't work and ended up with a colostomy. I do not want to go down that road. My bloodwork is good, not losing any vital minerals or other things and my total blood is good too despite my bleeding issue. Although the quiet pounding in my ears has returned I just noticed, but even my blood pressure was just fine at the appointment.

I'm glad all my numbers are good, the sleep apnea and heart monitor studies didn't come up with anything of course. I knew they wouldn't but at least they're done. Next is my echo cardiogram stress test on Saturday and Jon has doctor appointment on Thursday. I really miss walking to and around the park when I was picking up the boys. Need to look for a walking park nearer than Santee and if Jon doesn't want to go, that's fine. He can nap while I go for a walk but he'll probably insist on coming with me because he's protective  like that. He'd prefer to go to the mall and walk around and to me that's boring and too noisy if that makes sense. Too many smells, sounds and people. Not really over sensitive about that sort of thing like autistically just annoying. If I'm going to the mall I am going to look in shops or shop and get something to eat, not just walk around... smelling popcorn, then candy, then perfume, then something else, it echoes a lot too. I'm a country girl, I love more open space, the sound of wind in the trees, identifying plants I see, marveling at flowers or birds in the trees. Jon is a city guy, likes gravel and pavement and sounds of the city and buildings around him.

We're doing okay for food still. Not quite halfway through the month and need to go to the store for resupply on milk, bread, eggs and mayo (I decided to make egg salad and macaroni salad). I know some medicare plans have a senior food allotment program but it's primarily for 'special needs/chronic illness' situations like diabetes which counts us out. So we have what we have and do what we can with what we've got. As for the bills, will know what SDGE bill is for this month tomorrow hopefully and then have to pay phone bill within a few days.

Oh, side note, because neither of us has any other income than social security and no assets or other things to report, we don't have to file taxes in CA. Seriously. I looked it up because I wanted to be sure, it's not considered taxable income to the Feds or state. So, no more hassle with taxes as long as we don't get other income or move out of California to somewhere it is taxed (not highly likely in either scenario).

So that's all the news fit to spit on the internet. 

 

So, nothing new really

 

 Appointment with my actual cardiologist was uneventful. She asked how I was doing, any side effects, severe bleeding that sort of stuff. Told her about my GI issues (which she knew about because she actually looked at my chart all the way through, right now dealing with hemorrhoid bleeding, but it was sporadic. Wanted to keep me on the Eliqis and the other one but if things were worsening there is a procedure that inserts a 'wall' in front of a little pocket on the right side of the heart where most blood clots form. She said it was just for information just in case, but other than that don't need to see her for a year. 

Oh and if I need to have surgery or a procedure I just have to stop the Eliqis 3 days before but other than that all clear. She put that in my chart for the other reconstruction doctor in two weeks. So that's going to be moving forward and have to be timed in between infusion sessions.

That's it. That's all the excitement so far until the rest of my appointments this month. Filled out the check in form for the MRI appointment and made sure to note which type it was and 'Not MRI compatible'. Will see if anyone actually reads the answers on the form.

Jon is doing good, had a blood draw and urine sample same time I did my blood draw. He does not like needles, faints sometimes even so he was wobbly and shut down all the way home. We had lunch and some snacks so he's napping now.  I've gotten used to being poked and it doesn't bother me as much anymore. Won't look at the needle of course but other than that just don't think about it. IV's are part and parcel of my whole life now so can't do anything about it. Infusion on Monday which is a non-event now, know what to expect and not as anxious about it. No contact from the billing department other than a vague 'we have a business matter' call that I didn't have time to wait on hold for.

Chicken fajita rice bowl... sort of. It was tasty but kind of winged it as usual. Leftover chicken from Costco  pollo asado then sauteed up some peppers and put it over rice. Cooking is happening but nothing amazingly inventive. Had chicken breasts flavored up with rice I think last night, thighs tomorrow possibly teriyaki or bbq. BBQ sauce with potatoes, that's what will happen. 

Food shopping happened but due to costs, didn't stuff the freezer and cupboards nearly as much. The usual hamburger and chicken happened with the pollo asado as the special meat. No fish, not steak, barely got the pantry stuff we needed. Enough to get us through a few weeks at least and enough extra money to supplement milk and bread and water along the way.

Finances are as troubled as always. Hospital bill and AMR were autopaid and I just put the storage rental on autopay which hopefully will go through tomorrow. If not I have to wait and see if it goes through on Monday. Today is the end of the 'month' cycle so if it sends me a message that it's due I will have to make a phone call.

 

 

 

 

 

 

 

 

 

 

Potato crop is woefully lacking this year, I have one more plant that's still hanging on and only some small spudlings that will be saved for 'seed' in the fall. Planted four unknown variety of peppers when the last of the cauliflower and potatoes were pulled. 

I have four more peppers and two cucumber that are waiting to grow up to transplant size. Oh and yes, that is a plastic egg container I have the pods in so if you know the size of a dozen egg carton, that gives you another idea of just how much kitchen space I have near the stove.

Anyway, Weather is pleasant, got hot for a while, cooled down, warming up again and might get cloudy enough to rain in a week. Right. And the local yahoos in the neighborhood are already yelling their heads off and I don't mean coyotes. Those make me smile, these guys make me cringe.

Oh we had a bit of a kitchen sink issue a few days ago. Apparently the garbage disposal housing developed a crack and was leaking when we ran it. Cleared everything out underneath and wiped the particle board/plywood down and contacted manager. It wasn't a dire emergency so Mike got there the next day and replaced it with a spanking new 'cadillac' version (according to Jon). I walked into the kitchen the next morning and saw Rocky staring at a small puddle of water in front of the fridge. Okay. I asked Jon if he had filled ice trays and he said yeah, I checked but there was no drippage from the freezer or the fridge. We have a cotton woven rug in the kitchen and so didn't notice that the water was coming from under the sink... a lot of water. So in the process of replacing that, Mike apparently had jarred loos the p-trap on the other side of the sink and that was not a minor leak. Messaged again and said we wouldn't use that side of the sink (non-disposal side) cleared everything out, but since it was a Saturday and Easter weekend we had to wait for two days. Quick fix when he got there thankfully and all better now. If not for Rocky staring at a puddle that wasn't moving... wouldn't have known until we stepped on a soggy wet rug with bare feet.

That's all the personal news left to type. There was something else but forgot or maybe noted it already, whatever. 

Oh but if you want some giggles and some possibly healing kind of stories, check out JaySea Lynn, she does little skits on youtube and other places but also has written a couple of books those skits are based on, Hells Belles and For Whom the Belle Tolls. I have yet to get to a book store to get them but it is an intriguing plot about the 'Hellp' desk in Hell and the souls the various characters encounter as well as their own personal interactions and problems. Loads of fun and some deep dives into personal healing as well. 

 

 

 

 

Weather is holding steady, nothing dramatic happening

 Grocery shopping is the task for this week(end) Happy Easter to all who celebrate it. Money will be tight again this month despite having another surprise gift of money. It does help, absolutely and I am very appreciative and will use it wisely. 

 We did first pass on groceries which was minor then a second pass at the main grocery store and we were going to go to Costco today but last night Jon, being on jury call found out he was supposed to show up this morning for jury selection. Most of the morning was on hold while he sat at the court building and I waited for about an hour then went home made some salsa, pico de gallo, used the restroom, asked Rocky if he wanted to go out for a walk (he didn't). I then left and went to the library to see if they had any seeds I could use, (they didn't) then since it was around 11 went back to the court building and parked in the structure to wait. Brought my knitting, got a message from another friend and chatted with her a bit then Jon called to say he was released from jury duty (as we both figured would happen). He was asked if he could be impartial between a police testimony and a defendant and he said nope... he was asked his background. So after explaining his NY police experience, growing up in Harlem and being a loss prevention lead for 9 years, yeah, way too much to be impartial. 

Anyway, that was around noon, he offered to get lunch and we stopped at Panda Express, signed  up for their rewards app and got $4.00 off our order making it cheaper than getting Jersey Mike's which was his first idea. Will be fixing pollo asado tacos (and rice maybe) tomorrow after we hit the store again. We have no block cheese to grate nor any sour cream. We have delicious salsa and pico along with tortillas and refried beans to go with the tacos. I bought some sour cream and because I also bought ruffled potato chips I made onion dip instead of waiting for the tacos. It's good to have options just have to remember what the options are for. 

As for my internals, everything seems to be working fine, I don't know if it's just me but I can tell when something is wrong or 'off' with my body and it can't be put into words. Kind of like knowing there's an odd sound in the engine but don't know what it is. I can tell the meds I got are working on my gut, first day or two there were some 'gas pains' (as I've usually called them) which is actually the spots in my intestine that were being targeted. Could have been something I ate too but since those pains are gone and it just feels like there's a coating that is helping my system not be so aggravated. Heart has been fine, until last night gave me a flutter suddenly just sitting up in bed. No chest tightness, breathing deep works just fine, no catch or coughing. YAY! Will see what happens when I taper off the prednisone completely next week. 

My fortune from PE was along the lines of 'a friend's gift will bring you something interesting' or something. Good connotation but for some reason all I could think of was a friend walking up and slapping me in the face with a fish and saying Congratulations!' Honestly, I have no idea why that image came to mind. I was fully awake, none of my drugs are hallucinogens... post food stupor maybe. 

Interesting day for sure, this whole month will be interesting.

 

 

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.