So, diagnosis/treatment for Crohn's

 Weather has been amazing, Spring like temps, breezy and clear skies. Seeds are sprouting, I pulled a carrot that may be a bit small but still good. It's a shorter growing variety anywaym and pulled the last two scallions that were big enough and pulled the cilantro stalks, saving some of the larger leaves. 

 Successfully traded another bag of yarn, a handful of fresh scallions and an electric griddle that's not been used much for a 12 pack of coke. I thought it was going to be just handing my friend my items but she brought out the sodas as a trade off. 

On with the medical news. 

Met with Dr. Keller, who is my favorite doctor so far, and he explained a few things after asking how I was. He was dismayed about how frequently I was hitting the bathroom and definitely wanted to get that under control. He couldn't find any other pointers for my condition other than Crohn's Disease. He said that even with the length of time I had used the naproxen and then stopped, my system would have healed better from any damage.. but it's still a pointer (and me knowing I enjoy high fat and spicy foods diet may have been a factor as well). Come to think of it, wondering if gall bladder fail was part of the 'collapse' of the system so to speak. 

After discussing what's been going on and all that he wanted to get a more recent fecal test done for only two things and in order to get the diarrhea under control put in for a lower dose of prednisone at the pharmacy. I told him about my experience with the last dosage I had and he said this is almost half of what that was. So hopefully it won't have as much impact on my moods and appetite. Since that may cause insomnia I will start that tomorrow morning. Crossing fingers on it not having as severe side effects. 

 In the long run, there are two treatments for Crohn's which is an auto immune disease and I'm not going to try and spell them both out. One has an increased risk of cancer, specifically lymphoma which is a flag in my chart for the spot they biopsied on my pelvis so he was steering clear of that one. He mentioned 'Skyrizi' which is being advertised all over and he seemed to dismiss that because it isn't ideal for my situation. So he was going to put the paperwork through for Vedolizumab or 'Entyvio' (he wrote it down for me). As per the Mayo Clinic web site: "This is a type of medicine known as a monoclonal antibody. It works by stopping certain immune cell molecules — integrins — from binding to other cells in the intestinal lining. Vedolizumab is a gut-specific agent." So it is an immunosuppressant and of course has the usual cautions about 'live' vaccines and being cautious in crowds and people with contagious situations.

What the treatment involves is going into an infusion center much like I did for chemo and get hooked up with an IV for about 30-60 minutes at '0, 2, 4 and 8 weeks' according to Keller. After the initial run it will be regular appointments at 8 week intervals with check ups once a year. Side effects are cold and flu-like symptoms, joint pain, headaches, fatigue... yada yada... so joint pain I'm dealing with already, taking tylenol for arthritis anyway and just may have that in jumbo size for the time being. 

He also ordered a specialized MRI for looking at my small intestine called MRenterography but it doesn't involve any radioactive material but likely will have a contrast which I've had before. He said he was trying to minimalize the number of tests and scans I have to do and I told him heck go for it if it's what he needs. He was going to double check with Dr. Moeller about the infusion and any interactions or problems it might cause. I also told him that I was likely going to have breast surgery scheduled in the next few months and he kind of half grimaced because he didn't want me to miss any treatments or too many of them or it would possibly develop an immunity to it. So since it would be 8 weeks apart I think I may well be good on that if it falls in that time frame.

So many balls in the air to juggle for the doctors! I'm just over here waiting for phone calls or messages and recommendations and such. I guess I'm one of the balls in the air? Oh I asked if there is any limitation on my diet or foods and all he said was 'high fat and spicy' food. Greeeaaat. I told him I just made a big try of 'enchilada lasagna' and quick looked at me and said, 'oh that sounds good!' I told him it was. Going to have to write up that recipe and give it to him somehow. He wanted to schedule another visit for June or July but apparently he's booked all the way out to August. Yeeesh. He must be one of two GI doctors in the system (I'm guessing at that). Oh and with the diet advice I came home starved, fixed a helping of the enchilada and had some chips and salsa. So much for low fat and low spice. He said 'in moderation' and that's my moderation today. 

Other than that, rent, storage, car insurance, internet and the medical payment are done, AMR I have to call or email them about making arrangements. Only things left are SDGE (which I won't know how much it is for another three or four days) and phone and as usual do not have enough to pay both of them. 

So that's it for today.  Better living through chemistry and as good a medical system I can get.

 

 

Second round of groceries and a mistake

 The weather is being warm but nice now, it was in the low 90's for a couple of days and that was kind of miserable but we powered through it without the AC. The nights drop down to the 60's so everything cools off nicely. It's when it doesn't cool down sufficiently that the temp inside almost stays constantly too warm, but it's been nice thankfully.

 

 

 

 

 

 

 

 

 

 

We got to Costco for the meat and other things run, dry cat food and a chocolate cake because we..... are adults. Now, I love Jon until my days are done, but he is a man who has spatial and directional issues. That first photo is how he cut the first piece of the cake. ::insert facepalm::.  I corrected it when I got my piece and cut it conveniently in proper size slices for future eating. I didn't think to get a photo of the after until I put the top on the cake but you can see the difference. This isn't the mistake in the headline.

The mistake is me getting my weeks mixed up due to the online pre-check in for appointments. I wasted a ¼ tank of gas today going to my gastro appointment only to be told by the receptionist it's next week. 

Jon is trying to make light of it, saying it was a pretty day to be out and about, but with our tight budget I can't afford to be wasting gas like that. We cannot go anywhere now other than doctor appointments and maybe to the store.  Especially since gas prices just went sky high.  So yeah, that was not something I wanted to spend time doing, a costly mistake. But anyway.

Last night I prepped everything for doing burrito bar today for the two of us. Can of refried beans I dressed up a bit, added a spoonful of sour cream, garlic and onion powder, chili powder, salt and pepper and a little lime juice and a tablespoon of butter. (bound and determined to get close to restaurant beans one of these days without using lard). Jon declared the beans tasted good. Fried up the hamburger last night with taco seasoning so all I had to do was heat up in the microwave, veggies all cut and a new batch of salsa as well. So that was a tasty midday meal and have chicken breasts in the fridge for doing chicken sandwiches tomorrow. Got the buns and all the veggies that will be prepped tonight, will figure out if I want to do a 'special sauce' as well.

I'm learning with meals that have vegetables or meat that needs to be cut to do it the day/night before. Time saver on the day of cooking. Not like I have places to go and things to do most of the time but not having to worry about cutting/slicing tomatoes and taking up counter space with equipment is a relief.                                         

I also scored a new pan from the table (looks kind of like the photo sans lid). Doing a search it is called a 'jumbo chef's pan' or a 'jumbo cooker'. Didn't get a picture of it before Jon tetris'd it into the pan cupboard. Downside is it didn't have a lid and the opposite handle is loose due to the nut and plastic cover having come off. Apparently it was the landlady's because she was out and I was deflecting her puppy with it and she said 'yeah I don't have a use for that anymore'. It is about an inch too big for the large frying pan lid I have unfortunately. The inside bottom has a not hex pattern but texture to it which Jon 'cleaned' and I think he took some of the non-stick coating off or it was blackened from cooking and was already worn off. In any case, looking forward to figuring out what to cook in it. Only problem with a jumbo pan is having teeny tiny storage space.

My system is still wonky, but working with it best I can. I've been a bad girl and having way too many pickles over the last few days. I heard that pickle juice is great for electrolytes and so bought some zesty Vlasic and found Grillo's spicy on sale. Score! Then I realized that the higher salt content is not good for my current issues. But looking at the label it has 200mg of salt (2% of dv) but no potassium..... so the 'lore' behind using it as an electrolyte replacement doesn't hold up. Oh well, still going to eat them just as with all things, in moderation. 

Garden is plugging along, Jon tipped over the seedling 'tray' in the window the other day but nothing was broken, some of the pods were shuffled but it's all good, if seeds come up I'll rearrange them. I had three rows of three different kinds of peppers.. if they got jumbled then I will have a 'surprise pepper' garden now. Oh well. Oh yeah and one squash plant, that will be easy to tell apart.

So that's it for this week so far. Trials and tribulations continue apace.

 

And first round of groceries

 Another hot day today, we're still trying to survive without turning on the AC. It's already after 4 and I put the sunshade in the kitchen window but didn't close the windows there. The sun is just getting below the other roofline and temperature has dropped dramatically, so Jon opened the front door yay for air flow!

 Evening on the grass, last illumination of the 'weather tree'. Supposed to be able to see all the planets lined up. Not with all the buildings around us.

Not many photos to post, been busy with things and stuff. So we have some groceries right now, pantry supplies veggies and fruits, things to make stuff. Resupply on the yogurt and two apples, favorite treat/snack for me right now. We'll hit Costco tomorrow and hopefully get some shrimp, the hamburger (which went down .20 from a month ago yay!) and whatever chicken I feel like getting. We have a little over 100 left in the food money, I went overbudget with the regular groceries. I estimated $180 and it was $209. A few things that I didn't factor in were tossed in the basket but it's all good. I splurged on the bologna but that was in the budget, $7.50 for a 2lb pack of all beef bologna. Totally worth it for tasty sandwiches, which I had when we got home. Will have a fried bologna sandwich in a little while and we also got bacon because it was on sale. Sometime in the next few days will have chicken bacon ranch sandwiches for sure.

I still want Mexican food. Need some enchilada sauce and cheese to make my casserole or even regular enchiladas will have to check Vons for that tomorrow.  

I miss Enchiritos from Taco Bell. Sure, there's copy cat recipes all over but... I'd have to make it.

Planning meals is the logical thing to do but typically people would do that on a weekly basis when you would do weekly shopping. I just did a month's worth of groceries and planning a month of meals is daunting.  We don't always need to have a fresh meal due to having leftovers or lack of energy, or busy day. But having a list of possible meals and planning ahead is the way to go. Do I always do that? Nope.... because I'm chaotic like that.

In other news, Jon finally got some eye drops and it has changed his mood incredibly. He's had watery eyes for years and my doctor told me when it happened to me it's because your eyes are dry. Mine were from using antihistamines and maybe his are too because of his allergies. DUH! So yeah finally getting drops his eyes aren't watering as much, yay for simple fix that we didn't have to pay for (OTC benefit card covered it).

As for me, had another bathroom emergency that didn't end well today. Luckily Jon had just gotten out of the bathroom but I still didn't make it in time. Only soiled my undies and a small spot on my pants thankfully but am now walking around the apartment sans trousers, shoes and socks. Thankfully it is very warm and doesn't bother me at all. 

I have to contact the Sharp financial office to see about 'payment arrangements' for my over $1000 medical bill. I can't add the extra 250 (not the ambulance bill) to the account because then it jacks up my payments to over 300. I can barely manage the $89 right now. So yeah, extra bills, no money, story of my life. Oh and no tax return to help with it either. Not even sure about whether to file or not, but since we have to report that we indeed had medical coverage, then have to do that.

That's all for today and yesterday. Enjoying my fried bologna sandwich and pickles for dinner.  

 

 

 

 

We gots money, frustration and good news

 So for some reason, the bank isn't emailing me that I got paid 'early' anymore. So I was bummed out this morning when I woke up and got no email. That put a damper on my whole day that was compounded by only having toast and peanut butter for breakfast. 

 ¾ moon  yesterday afternoon, best I could do with my phone camera zoomed in to 4 x. Again, the colors are a LOT deeper than what they actually are.

I woke up, Jon came in and said we got money which alleviated some of my mood but I didn't sleep well which was another factor in my day. We don't get EBT until Sunday which is okay but still made me cranky as we had to go to Costco for gas and paper goods. What really irked me, and am still trying to figure out how to lovingly but firmly tell Jon, is he spent $50 on a an Elvis CD set before I even got out of bed. I had just told him last night that we needed to spend less and save money so we have some at the end of the month. What does he do firs thing we get money? So I am really miffed beyond reason that he did that. We just came through two weeks of scraping and scrimping and asking for a few extra dollars from people to make it to the end of the month. The man has no willpower at all when it comes to his own 'hobbies' and I haven't spent any of my own money on my hobbies in months if not years because I have to pay all the bills out of my money except for the rent that he helps with half. 

Forgive me if I'm a bit frustrated, jealous and a bit angry that he has fewer bills and a bit more money than I do to spend and doesn't see a problem spending that much money on something that does not do anything for both of us. Is that unreasonable or selfish? 

Anyway. We got paper goods, sodas and a bag of chips on his money, forgot to get water but we'll be going out on Sunday or Monday for that. He kept asking if I wanted to get anything else at Costco and again I had to bite my tongue and say 'not today' because I know he would use his money for it and I knew we were going to the sandwich shop for lunch. I don't have the budget for getting anything on my 'regular' money. I don't think it's sunk in with him that I have an auto payment to the hospital for $90 and now an extra payment on top of that for another bill, plus all the regular bills. I think I have to remind him every month or two weeks of how much money I have to spend on keeping a roof over our head, the electricity on and my storage paid in addition to everything else.

We did stop at the sandwich shop we haven't been to in a while and went dutch because it was actually cheaper than Jersey Mike's. My sandwich only cost $11 but his was more because he got a bigger sandwich. We have left overs for dinner later and have milk and cereal now (from his money) so we're okay for a day or two. Oh, taste and food sensory have gotten back on track. I had an entire coke and it didn't taste weird or 'separated'. Only going to have one a day anyway but it was nice to have after the sandwich.  

As for the good news, Amber got accepted into SDSU for the Fall semester! She was so cute though, I was in the shower and left my phone in the bedroom so I came back to my phone message saying MOOOOOMMMMM! MOOOMMMM! MOM! I got accepted in SDSU! She also announced it on Facebook which she isn't on much but it's that big a deal. I told her I had no doubt she'd be accepted. She's getting her degree in International Business and if she goes through with her Korea track she'll do 2 years here and then the last year in Korea.  If the world doesn't totally unravel and blow up by then. I told her that and she sent back a 🫰.  Forgot to ask if she had started the process of getting her passport.

The weather has officially turned to Summer, got up to 96 today while we were out. So it's warming up and 'looking a lot like Summer'.... bleh. Jon's taking a nap as usual for this time of day, Rocky is doing the same on the headboard.... Just in a mood today for various reasons. 

 

 

 

 

Oncology appointment was good

The weather is still warm and breezy, provisions running low but we're managing as there's only two or three days left before we get money again.

So doctor was very pleased that my 'liver numbers' were back to close normal and apologized about the kisqali causing it. She said not to worry about ever going on that again but she felt it was okay to start the pravastatin (cholesterol med) again. I asked if that was going to affect my liver because she had told me that it's taken up by the liver easier at night. She wasn't concerned so I shrugged and said okay. We scheduled a mammogram and will be calling radiology to set up MRI and PET in the next three or four months. One is for the lymphoma spot on my saddle bone in the back and the other is for left breast that they want to keep track of just in case. Will see what happens down the road if I have to have any blood tests for other doctors.

All the things to juggle in the coming year. Imaging, possible colitis treatments, surgery, all the things that you never thought you'd be considering to shape your life. I am thankful I have the medical coverage and fantastic doctors to take care of me. Still have medical bills that are increasing as bills from the hospital roll in, but not nearly as bad as if I didn't have any coverage. A little over $1500 which of course I can't pay even partially, but the total hospital bill is somewhere over $14, 500. Plus the ambulance ride for $250.

I always end up talking about either food or money.  Bonus for today, parking was all boogered up so the pay gate for the parking lot was up so didn't have to pay, huzzah! Would have only been $4 if i went over an hour but anyway, free is good.

Obligatory picture of my garden bed that is doing reasonably well. Might have Romaine in another month, already pulled about six of the onions that were in front there and cauliflower and potatoes still a long way off from being ready.

Carrots looking good, base of one is turning color which is a good sign and the bunch of onions I pulled. Only about three or four puny ones left in the bed now. Carrot tops are so cute and fluffy! 😉

Sweater is progressing but am almost done with that first color and making decisions on what to do next. It also might be just a tad oversized but bigger is better than smaller to an extent. Why do I look like a frowny face old lady? Maybe because I am?

I've seen other knitters showing off the progress on their sweaters and they use video, that takes time and energy to edit the video and then upload to the right platform so not going there. Same color in the back just longer line. 

Anywho, need to go figure out what else to have for food today. Used up the last of the shrimp in a rather lackluster attempt at scampi. Used the wrong kind of noodles, not enough garlic and in general, it was food but not nearly enough. I have chicken thighs that might be thawed enough for a meal in an hour or so. Jon doesn't like to eat anything big that late but if I just cook them up in the oven on their own it'll be good. And can't do anything in the kitchen because Jon is napping. Sigh. 

As i say, will make do with what we have because that's all we've got.
 

 

 

 

Everything is as good as it can get

 Weather has cleared, sunny and warm. Still gets a wee bit nippy at night when it drops into the low 50's after the daytime is in the low 80's. That's quite a swing but typical for spring weather really.

One of the views in my complex during a walk with Rocky. There's lawn where I'm standing, building to the right and left and behind me is a gazebo or pergola frame at least. Garden is to the left of that Giant Bird of Paradise.

 Not much has been happening which is why there hasn't been a daily post. Internal system is leveling out to a point, hands are still trembling but I think that's going to be with me permanently. So three internal changes that are part of my life, along with the arthritis which has 'returned' since I'm off anti-inflammatory meds. Fingers get stiff and have ached a few times, same with my knees but not as bad. Have to stick with Tylenol to manage aches and pains for now. Thankfully it's not as bad as it was fifteen years ago when I was having to take 1000 mg of naproxen a day. 

We still have food in the kitchen, enough gas in the car to get to the doctor appointment on Thursday and then hopefully we get money on Friday. Still making some meals and then having leftovers, ramen and whatever else we can scrounge, as usual we're getting low on a lot of things, other than meat. I'm  used to the ebb and flow of food by now so it's just a statement of fact at this point. I am thankful we don't have to pay for our prescriptions and some 'medicinal/medical' things are paid for on the other OTC card. The printed list is very limited so it's kind of a pain to have to pull my phone out and check items at the pharmacy to see if they're covered. Which glitches sometimes. Ahhh technology. 

Oh speaking of technology.... grrumble. I got a notification on the imac that it needed to update the OS but there wasn't enough room for it to do that. Took me three days whittling down apps that I could delete and pictures that were ten years old and only memories of plants really. Still tried to do it and it said it still didn't have enough room. I swore I had deleted enough and then remembered the old trick, 'well did you turn it off and on again?'. Yes I had cycled the power but did not shut it down completely. so I did that and then checked the update window... No storage issue message yayayay! So, with that completed I could update the second life viewer on that computer finally and I (unknowlingly) made the mistake of clicking on the disk image (.dmg) too soon and it said the disk was corrupted.. I downloaded from the official site and then took a deep breath, downloaded the dmg again, waited and then bingo, just the downloader image. Yay! So that's all fixed.  I have been trying to stay up to date on all my electronics with updates this time around.

 

 

 

 

 

 

 

 

 

 

 State of the garden today, picture taken around 2 pm. Carrots are getting up there for sure, I culled a small one out that was maybe 4 inches (only about 2 inches edible) and was way too bitter, almost tasted like turpentine. Had to give it a shot you know? Cannot wait for the potatoes. Tried to gently dig around the small purple bush but nothing where I lifted the dirt. Not sure how I feel about eating purple potatoes though.

My nails continue to grow, if they get rough I grab the clippers because I can't find my nail file. Thumbnails are still struggling but I'm not chewing them. I also remember why I never liked long nails, especially as an adult. I hate getting stuff under my nails. Dirt, food, anything. So making meals is interesting, especially the meatloaf. Yuck. Need to invest in a nail brush for the kitchen for hand use not cleaning. Getting used to typing 'flat fingered' as my middle two nails are the longest. I've made a few typos where my nail contacted the keyboard base but finger didn't hit the key. Learning curve you might say.

So that's it for today. More news on the other side after my doctor visit. 

 

No more rain for a while

Still a bit nippy at night and is sweater weather for the most part. It's clear and barely breezy right now at 4:45 , so barely even any haze on the horizon from my vantage point. 

SO. I had to refill my pill compartment for night pill last night and was going through my assortment of bottles to find the right one and found the Prednisone bottle. That still had 3 pills left. OOPS! I thought I was done with them because I was going according to the calendar not how many pills I had left. Need to figure out what doctor to contact and ask if I should just never mind or take them. Too late to message now they wont' see it until next week anyway.

I was going to contact my GI doctor about my other issue but, that appears to have cleared up today. Stupid wacky body issues making me hesitate and get all confused. I am having more A-Fib issues today, sleep was okay, only woke once with leg issue but knew I had to go pee. Jon beat me to the bathroom so I had to sit and massage my calf waiting. Then woke up around 7 again, but due to Rocky wanting out of the bathroom because it was morning and breakfast time. By the time I finished doing that, I was awake and so was Jon. So.. no sleeping in today.   

It all worked out and usually does. I keep forgetting that we have 28 days this month and not 30 or 31. So hopefully only 8 more days left for money considering March 1 is a Sunday we could get money on the Friday before. A week from today. Still a stretch but we'll survive.  

Now, just have to gently and kindly tell Jon he needs to please pay attention when I say what we spend money on.  Like dividing what he buys for groceries and what I can use the EBT on. He bought all six cases of water instead of letting me buy the second three. I will admit, slap my hand, I spent $40 on Pollo Loco and that was an extreme expense that shouldn't have happened on the EBT money.  No more frivolous meals like that. We usually try to keep our extra meals around $20-$30 and we sometimes either split it or he buys one time and I buy another. A sandwich that we split is about $20 and that's at Jersey Mike's. We haven't been to our favorite sandwich shop in over a year because of the cost mostly. Sure it's worth it but if we did go there we'd have to go dutch. 

Managing money is tough when you have so little and yet want so much more. You get tired of having to cook every day, you know? Sometimes I want a good burger and fries, or a nice hearty sandwich. Something that someone else is an expert at cooking.

This was today's meal. Meatloaf and fries for me, Jon had rice with his and used some of the jalapeño tomato sauce as his gravy. No ketchup was used in this recipe, was very moist and cooked 'medium well'. Packet of Italian Dressing and Mushroom Gravy, chopped onion, onion powder, garlic powder, salt, pepper, milk, two eggs and however much breadcrumbs I had left. Turned out delicious! Fries are still from the bag I got way back last year from the food pantry event.  Cooked up the fries in the oven super easy, sprayed the baking sheet with cooking oil, put the fries down, did another light spray and then sprinkled some salt just before putting them in the oven. Oh, they also mostly thawed because I got them ready too soon. Meatloaf wasn't done yet by about ten minutes but it all worked out. Almost In-N-Out worthy fries.

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

'So far so good' said the man who jumped out of the 20 story building.