I have not been feeling my best lately and putting off taking care of myself. People I value have pointed out just how stupid that is, as well as avoiding the doctor, so I sucked up my issues and called.
I'm hoping to get some answers and some help.
Some short, but good bits today.
Tuesday sadly Shepherd's pie was cancelled as there was a bug going around my stepdad was not feeling great. So, my mum came over to our place instead, we grabbed Tacos for Tuesday dinner and the three of us enjoyed watching "The Muppets". My mum started out hushing at me but by the end was singing all the songs out loud with Wash and me. It was a really sweet and happy night and memories for all of us, I feel.
A little later on just after we had finished the second episode of "Texas Ranch House" the power for our entire block went out. I'm still trying to figure out if that is ironic. I just grabbed some candles, Wash went to sleep with a few extra blankets, and I stayed up and read for a couple hours until the power reset. Then I turned in.
Wednesday I really was not feeling that great myself, and Wash really just needed to *write*, so he just took the computer over for the day. He finished his short story a while ago and has been doing his best to get some help to really edit it and make it into a nice product. I'm proud of his hard work and how he has been able to re-focus his grief of losing his ability to be an architect, into something else; writing fantasy/fiction and illustrating. Some days he can work for a few hours with great focus, but most of the time his projects lay undisturbed until I remind him or something happens to inspire his creativity. Brain cancer and injuries are so odd; certain predictabilities, and other flat out deficiencies. He cannot remember to brush his teeth, or even eat on a daily basis, but he can still write a 20 page short story. I am constantly amazed by how much of "him" remains, and how much of his personality and even skills have just gone away.
We also had some good insurance news this week; our old horrible case-manager for Wash is off, and our new one is a very respectable woman. Wash had a 2 hour assessment that left him very drained, but we have a few new things to help him now; a new cane he got today and he will have an appointment soon to check his eyes and see if glasses can help him. We're not sure how bad is sight is due to the tumor pressing his optic nerve and/or the brain surgeries, and how much glasses can really help; but I think that if his sight is improved, even if for seeing or just reading it will help. Everything right now I can do to help him still *feel* independent, even if he is not, it helps his Quality of Life. I don't like thinking we are at the point of just audio-books for him, so I hope maybe, just maybe, reading glasses might help him do it himself.
So, my paperwork says that as of April 2012 Wash will be on ALTCS totally and in full effect, and at that point (the social worker explained this from my paperwork) we will STOP having to pay the additional $125.15 and $98.00 Medicare/Medicaid premiums a month. Which I've been having to do out of pocket for about a year or so now. It will be really nice when I can stop being "past due" on all my bills.
Today I am trying to play catch up as best I can, while keeping my eye on him, and feeling gorram awful. I see my doctor this afternoon, and I'm hoping even if there is no pill for my stress levels, she can help with some ideas/referrals, or diet.
In the evening we went over to my mum's house and spent the evening with my older brothers; one who lives around here showed up even though he WAS sick with a cold (he wore a mask the whole night) and my older brother Yoshi had flown in for a night to fly a charter Cactus League team to Japan the next day. We got to share photos, stories, and some laughs. I heard all about my lovely nephew and his adventures (he went "skiing"/sledding for the first time in Feb! He made a life sized 3 foot tall snowman too.) shared some of what was going on with us, and just had a nice night with *my* family around the table. It was wonderful on so many many levels.
Having him live so far away makes things hard, but I'm glad for the technology that allows my mother to speak and teach English to her grandson in Japan, and allows us to share so much so fast. Wash even remembered the last time he had been in town, which was back when he was still getting chemo I think!
I can't think of what else has really been going on, but I've been forgetting things all week.
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Hi,
ReplyDeleteI don't really know how to explain this, so here goes. I tried to send you a little care package through Amazon, but UPS refused to "leave it unattended" in your mailbox, and won't let me submit anything online to get them to redeliver, so it is at the post office if you can find a way to pick it up. My email is sdh220@msstate.edu if you want to get all of the info about it. Sorry this got complicated.
I actually started reading your blog not too long ago, after I saw ThinkGeek's writeup.
ReplyDeleteYou guys both have been in my thoughts ever since. I think I worked my way through your entire blog over the course of a few days - I admire you incredibly. I'm so glad that you've decided to share your lives with others. You seem like an amazingly strong woman - I could only ever hope to be so resilient!
Sending warm wishes and good vibes your way each and every day!
Good Evening
ReplyDeleteI just found your blog and wanted to drop you a line. I don't know how you will receive this mesage but here goes. Over the past few years I have lost four of my loved ones to cancer, one of them to brain cancer. I don't know why they suffered as they did but I do know how it feels to be totally exhausted while caring for someone you love. So I was wondering if it would be ok to keep you and your husband in prayer?
Yesterday afternoon, I hope your Doctor's Appointment for yourself, Tashi, went well; and I, too, wish that your brother Yoshi~~~~(who, by the way, is *SUCH* a nice-lookin' brother; and you have my permission to tell him so, too, haha!!)~~~~his wife, and your cute/playful/*adventurous* 3-year-old little nephew could all live CLOSER to you & Wash, although (like you say)............ thank goodness, nowadays, for the wonderful Technology Assist For Family Communications!!
ReplyDeleteFor you & Wash to N.O.T. (have to) continue paying Monthly Medicare AND Medicaid Premiums............ but to now have full/total Arizona Long Term Care System (ALTCS) coverage for Wash instead, (i.e., after April, 2012)............ is not only a blessed LIFTING............ *h.u.r.r.a.h.*!!............ of what was an (unnecessary!!), extraordinary, financial hardship, of course............ but also something that, (in my opinion, along with yours), should have been initially approved by the State Of Arizona FOR poor Wash's Catastrophic Illness............ i.e., right after his #2 Major Surgeries for Glioblastoma Multiforme Stage IV.
Prayers and ~ (((*hugs*))) ~ to you & Wash both -