It has been a LONG week.
We made it down to UCD fine even with traffic and the endoscopy went fine too. No problems with the prostate. He just has an enlarged bladder and does need to catheterize at least once a day. I guess if that’s the worse, it’s not so bad.
Yesterday though was a nightmare day.
- first we got a letter stating AAA was canceling our house insurance because of fire dangers in California. Great. Now we will have to find a new insurer and it’s bound to be A LOT more expensive.
- Then we get a letter actually 2 letters from the Cobra people for B’s insurance. We owe $710 per month. I thought we’d already had paid the first two months. I called and NOPE that was not to them. Great, more money out the window.
- I called the dedicated hotline for employees and said we’d paid the $1200. So just this afternoon she called back and said NOPE, that was for June and July when the company transitioned to the new insurance. I looked at the paystub and she was right. Nothing was taken out. Great:(
- Then on a positive note and money. B got his LLS grant approved for MDS and they will reimburse him the first amount of the cobra just covering him. so we should get that and it’ll help. We will submit the amount for the second month next week.
- Then I’m at the Sutter Medical site getting ready to pay the installment and I see another whole set of charges. WTF!!!!! So I call Sutter and she says oh they said (UHC) he wasn’t covered for those dates. By this time I was seeing fire and smoke was coming out of my ears. I then called UHC and the VERY nice rep says let me check. She checks and says clearly there was some wrong coding as he was covered. Give me a F#@king Break.
- Let see, I think that’s everything. But there could be more I’m blocking out.
Well, I’m exhausted from it all. Too much paperwork, money stuff, and confusion. I think I see the wine bottle waiting for me.
No, not really. Although we haven’t been spending money carelessly. Our grocery budget is our biggest variable expense. I budget $200 a week for everything including pet supplies, non-food items, wine, food and misc. That seems to be a good amount for us.
But when you factor in Costco trips like in August, I definitely go over. The Costco trips are often items that last a few months if not more. I’ve tried separating out non-food and then I get all confused and lose track of what was what so if I just lump it all together it works better for me.
For August I’m trying out $125 a week and I’ll see how that goes.
We aren’t going on any trips this year due to the medical stuff so there are no expenses there.
We also can’t eat out as B can’t have restaurant food yet. Although I have gotten him In an Out french fries and a shake as he needs to gain back about 20lbs. So we don’t really have an eating out budget. I have gotten a pizza or two so there’s that.
We also don’t have any big projects around the house but there are a few things. We absolutely need to fix our step coming out the door. It is awkward and has two levels so he and our daughter will put down a new concrete step that covers both and goes out farther. We wanted to build a deck out level from the front door and then a step-down but a deck would probably run us $3-5,000. So not now.
We’re on the fence about getting more trees down. I think we will call and see about at least 2 and get an estimate. We still have too many trees that are very big around the house. But that too is a very expensive project.
We still have co-pays on the medical side too and the GFM is being used for that but it’s getting low. The $6,000 from the beginning of the year is almost paid off. The transplant co-pays haven’t even shown up yet. Yikes, that could be scary.
Well, all in all, we’re doing okay.
Wowza, it is hot!
We’re hitting the 101 mark today and I have the coolers on already at 75.
I just finished the LR zone and am deciding whether to go to the gym. I don’t want to aggravate my rib pain. Plus, I’m trying to decide whether this merits an x-ray. If it’s a pulled muscle then it’ll slowly get better. If it’s a rib fracture, the question would be why? So, I think I’ll wait and see how it is tomorrow. I told my husband, that I’m pretty sure this happened last year but can’t find any notes relating to it.
I’m making a new recipe tonight ‘Roman Chicken’ that’s from Food Network. Mostly it’s just chicken, peppers, capers, onions and tomatoes. Not sure what makes it “Roman” but I’ll try it.
I finished a good mystery by Baldacci; ” The Fix”. It was a good spy mystery. Now I don’t have any books left so I may need to go down to the pet bookstore and see if there’s anything there.
It’s now later, and I decided NOT to go to the gym. Sunday is my favorite day there as all the regulars aren’t there. Plus there are no jump around classes although there is a yoga class.
B has two appts this week. Getting his orthopedic boot on Monday and Tuesday is clinic. His counts all went down a little but I guess that’s to be expected.
We’re off to Sacramento for Clinic and Labs. B still has diarrhea going on but the Predisone and Imodium should help. We think this is a small Graft vs Host going on since he is now off one of the anti-rejection drugs, Mycophenolate. At least it isn’t getting worse. So, all in all, that’s good.
I had thought to stop at Costco on the way home and I still may do that. It kinda depends on how long we’re at clinic. I really need to get my receipt in there as I was charged twice for 2 things. That’s always awkward as I feel like ‘will they believe me’?? But, like I said, it depends on how I feel and what time we leave Sacto. B just has to sit in the car, so that is something to consider too.
I filled out my LLS reimbursement form using SS for the first time. I probably did it wrong and they’ll kick it back. I found, after I submitted, their list of what was needed and I didn’t copy the cards just the payments, so that’s probably what they’ll need. They can be quite fussy about it but then again, they are giving me money, so I guess it needs to be done to the letter. I’ll just wait and see 😦
I started emptying the tent trailer and put some things in the barn. I’d like to completely empty it and wipe it down and then evaluate its condition. B likes to take his naps out there so I don’t think we’ll close it completely down.
Well, I guess it’s time to get going!
I have been wanting to write a post about the gift of life that ALLO donors give to their recipients. Many do not even know the person they are giving their stem cells to. It is a truly selfless act of both courage and bravery.
In our case, Barclay’s donor was his younger brother. RPN. Now there is some history here, so I will give a few details. Not a lot of details but some, as it’s complicated.
We have had little or no contact with either of his brothers for almost 20 years. This was mutual. The gist is there was an inheritance involved that was very substantial and the two brothers were included and Barclay was not. They stood by the monetary decision and did not offer to make it more equitable. A lot of angry words were said and that’s that.
RPN, gave his brother the gift of life, a chance to have some good years ahead and that is priceless. So I can forgive the past simply because of this single act of sacrifice. What RPN did was courageous and he did not hesitate. This act was, I think, transformative for me and Barclay on many levels even the cellular one!!!!
The past is the past and I can forgive and move on.
Life is a strange journey and healing the past is always a good thing.
We want to live for Now and what has happened is just part of our history that makes us who we are.
On a bigger platform, to all the people that have been ALLO donors, you are truly heroes and thank you!
It has been a lovely couple of days just doing ‘normal’ stuff around the house and getting back to some daily routines.
I’m back going to the gym and my muscles can feel it. Especially doing weights. I’m also trying to keep my steps or walking over 6,000 a day. My legs can feel that too. But it is necessary.
I’m also back to menu planning and cooking. The other day I did a lovely roast chicken and also a crock pot pulled pork. So leftovers are in the fridge ready to be used.
Thursday I went to Costco and spent a lot but much of it was bulk coffee( 2 2 1/2 lbs bags), toilet paper, paper towels, lots of non-food items.
My big splurge was buying the Dyson animal on sale. I had decided a while back that my old vacuum, a mighty mite, was going to need to be replaced, but what? This vacuum is handheld and cordless and hangs on the wall. That’s a big plus, as our closet is small enough and the vacuum sits on the floor. I’ve used it 3 times and love it. But since I bought it from Costco if in a few months I don’t love it, I will return it.
I’ve been reading a great deal which started down at the Kiwanis house. I’m loving the MCBeaton books and interestingly enough they are not cheap, even on Amazon. The two I found were from the clinics waiting rooms where there are some bookshelves of books for patients. I’ve taken a few and have a nice stack to return. Oh yeah, the Kiwanis house had multiple shelves of paperbacks and I found some good ones there too. I might stop in and bring some there too.
Next week is already filled with doctor appts. Tuesday, my daughter will take B down for his labs and clinic. Wednesday I see my doctor and I didn’t want to have to drive two days in a row.yAll in all, life feels like it’s almost back to ‘normal’:) Probably, that won’t be really true for a long time but at least it is better than B getting transfusions and platelets every few days.
First things first, TODAY is my 14th year since diagnosis. I was standing in our driveway and Barclay took the phone call from the awful doctor. Doesn’t matter, here I am!!!! So onward. Next week I get my labs in the middle of all this and we’ll see what my numbers do. Up or down??? I’ll deal with it one way or another.
It’s the weekend and B has no labs till Monday so we can relax. I’m heading over to Ikea as they charged me for 2 paring knives but I only bought one. I’m not sure how that will work but I’ll try. Plus I bought this darling fold out bed for our daughter to sleep on here but then discovered that the couch does fold down to a bed. Okay, Barclay figured it out I just kinda looked at it and didn’t connect the dots. Oh, well. So I will return that(insert sad face as it’s really cute). But I don’t need it now and then at home I’d have to store it so, decision made.
It’s all going really well and so far and now it’s just waiting till we can go home. Although next week is labs one day, clinic the next and then repeat so going home isn’t too feasible.
Tomorrow both kids are coming down so we can have Fathers day here. They are doing a great job keeping things going at home. Which, surprisingly, is a lot of work mostly due to having pets, chickens and large garden areas.
We are off for a small walk and BTW Sacramento is having a serious cool down so we are VERY comfortable…. Todays high is only going to be 84 so really nice.