Ocrevus, Visit From The Parents

.    I have my first infusion of Ocrevus on Friday, I can't wait! Interesting lead up to this one. Do you know how you have to battle the  insurance company for every single thing that you get? With this one what happened was that the infusion center took care of everything. The initial request was denied, they took care of the appeal and let me know when it was all finished. They must really like me, think I'm a great guy? Well anybody that knows me knows that's not true. The reason it works that way is that the infusion center pays for the medication upfront and then is reimbursed by the insurance company. They want to make sure everything is in place so they don't get left holding the bag.

    The parents and the sister came up for a long weekend. It was great to see them, they live three hours away and don't get up this way much very often. The parents are 82 and 81 in relatively good health, but showing signs of age. That's tough to see, especially when I don't see them very often. There were no major fights to report, which is always good with my family, so I'll take that as a win. They headed out this morning and I already miss them!

Good Bye Miss Dixie, Thanks For Loving Me Like A Son

It's been a tough year for the mother in law, but that all came to an end this week for her, she passed on Tuesday, her pain is over and she is in a better place with the ones that went before her that she loved.  It was a painless passing, as if she just went to sleep.  I was there with the father in law, her one true love for 62 years, he is struggling but knows there was nothing here for her any longer, so he let her go until the meet again.

I was damn lucky to have her for a mother in law, in 30 plus years she was only noticeably mad at me one time, and if you know me you understand how amazing that is!  Back about 20 years ago I found a a secluded piece of property that I fell in love with, took them up to see it.  I noticed she wasn't staying with us, she was off to herself, back turned to me, arms crossed, and I could hear her talking.  When I got close I could hear her, can't believe he is considering bringing my baby up here in the middle of nowhere, no neighbors, think she even threw in the possibility of us being eaten by wolves!  It was a priceless moment, one we relived many times.  It was an honor to be her son in law, and Miss Dixie I will miss you very much until we meet again!

Fundraiser For A Friend, and Very Proud Of The Father In Law

Having a fundraiser for a guy I went to school with, he has pancreatic cancer and is pursuing a less traditional form of treatment.  His sister put together a crab feasf for the winner, two bushels of steamed crabs, five pounds of steamed shrimp, and two cases of beer.  I got in the game late but was able to sell sixty-five tickets to friends and family at $10 a pop, so I'm happy to have been able to pitch in.  Found a useful thing to use Facebook for, now to get invited to the winners house for crabs!

Bitter sweet day tomorrow, the in laws house was sold and settlement is tomorrow for the new owners.  The father in law is having a particularly tough time with the whole thing, not that he will miss the house, but rather that he failed to take care of the mother in law.  We keep trying to tell him what an incredible job he did, but he will have to work that one out in his own mind.  In the mean time she is safe and secure in a very nice facility that takes wonderful care of her.  He is located in an apartment just a stones throw away from her.  The cost for this is a whopping$450,000!  He provided that and has a tiddy sum left over, like I said, he did a great job talking care of her, just wish he saw it that way.

Storage Shelves Installed, Going Through The Motions With The Neurologist

The father in law's house went on the market, he's not very happy about it, even less so about leaving his shelves there.  Hey, a guy can be proud of his shelves!  He wanted to know if I wanted them, since I don't turn anything down that's free, and we really needed them to organize the basement, I said yes.  So my almost 90 year old father in law, and my almost 70 year old brother in law took them apart, transported them here, and are reassembling them in our basement while I watch.  Life stings sometimes?

                      

Go to see the neuro on Friday morning, should be a hoot!  They called tonight at 8 pm, missed the call, curious what that was all about?  I'm guessing it was to tell me there was a cure, but I'm not positive?  Probably to tell me there isn't anything they can do for me, try to make me comfortable, and tell me they will be praying for me?  No, wait, that's what they told me last time!  We will see what we see, not overly confident.

No Swimming Pool This Year, Teaching The Wife To Play Pitch

We didn't open the pool this year, so much going on with the mother-in-law we knew we wouldn't have time to enjoy it. We researched the home healthcare options, set up the father-in-law's long-term disability insurance, and tried to take our fair share of visiting with her. Plus right in the middle of all that while she was in a coma in GBMC hospital someone charged $1200 to her Macy's account! Macy's has been nothing if not a nightmare to deal with, not even allowing us to report the charges. They said when she woke up to have her call them! Miss the pool, but as busy as the wife is, and it being too much for me to do, didn't seem worthwhile for the little bit we would have gotten use of it.

Friends of ours have asked us to start playing cards with them. Their game of choice is pitch and asked if that would be okay with us? For those of you not familiar with hits, it consists of high, low, Jack, game. The wife doesn't know how to play and wants me to teach her? The last thing I tried to teach her was driving a clutch in my truck, that didn't go so well and after we put the fire out she decided she didn't need to learn that! I'm going to give it a go but my plan is to ask for a different partner!

Time For A Haircut, Dealing With Aging Parents

I gave in today and got rid of the hair, no more cool guy status, no more skate rats calling me dude.  It will be cooler, temperature wise and a good bit easier to take care of.  It's was getting harder to do the hair in the shower, holding my arms up, especially the right, was wearing me out.  Now I'm built for speed, in and out, that's my motto!

This whole ordeal with the inlaws is a surreal nightmare, to say the least!  How life can change in 6 short months, for everyone.  Don't want to say the mother in law is the least affected, but with her memory and cognitive issues she seems to have adapted well?  It's the father in law we are concerned with, from drastic weight loss, to losing his get up and go.  Hard to watch, particularly when they were such active, vibrant people.

Multiple Sclerosis And Breathing, The In Laws Into a Retirement Village

This breathing thing is a real pain in the rear, not really sure how to explain it?  I'm going along doing the breathing thing and BAM, I gasp for air, usually making some pretty attractive and snorting sounds.  I've talked to the neuro, they don't seem very sure what it is, but said we should look into, ya think?  My concern with it is it's happening about 30 or more times a day, but all single episodes, meaning no back to back snorts.  I will add it to my list of things to ask when Medicare kicks in July 1st.

The issues with the in laws is pretty much decided, both moved into the local old folks home, he in an apartment, she in the nursing home part.  It cost a fortune, about $350 G's, plus $12,000 a month, but that's not the worst part, the toll it's taken on the father in law has been tough to watch.  Sure, she's the one with the medical issues, but she's not always aware of it, he is.  He's lost a ton of weight, cries all the time, and is second guessing everything he does.  Times like this I wish I had in laws I hated, would make this part much easier.

Great Beach Getaway, Paleo Diet Slip

What a great weekend at the beach!  The weather was great, the parents came and met us Saturday night for dinner, then sat on the veranda in rocking chairs and people watched.  Went up on the beach Saturday, almost killed me, sand walking is now on my list of things I both hate, and stink at.    We had a wicked cool storm roll in, took about 5 minutes, came from the north and south, met right in front of us, cool.

Strayed off my eating plan whilst away, only slightly, but it wrecked my system.  Had a soda one day, sweet potato fries another, and it almost killed me.  My system is a finely tuned machine, it was like putting diesel fuel into a race car!  Doesn't sound like much of a slip, but I've had no sugar for over 2 months, it was enough.  Did I mention the fries were coated in sugar and cinnamon?  They were really good, but no more, 65 lbs down, getting there.

The Mother In Law Is Incredible, The Back is Back

The mother in law is doing great, been moved to a rehab facility for a few days, is tired of hospital food, and wants to go home.  I think she would do better if she could do the rehab from home, but they they didn't ask for my help with the surgery, have to think they know what's best.  I think we confuse what would be easier for us with what would be best for her?  All I know is I am seeing flashes of the old mother in law, it's wonderful!

Who was it said, take my back, please?  My back is shot, combination of sitting in the hospital for hours, walking to and from the waiting area to the room.  Had another shot yesterday, they don't seem to be doing as much.  I wish they could deaden the nerve forever, they won't for fear of me doing damage without knowing it.  I'm willing to take that chance.  Having more mobility problems from my back than from the ms.

The Mother In Law Is Recovering From Brain Surgery

The mother in laws surgery went off without a hitch, was about 4 hours long, and they removed a 4 cm, about 1.5 inch tumor from her brain.  She is doing well, though is having a tough time fully coming out of the anesthesia.  cat scans indicate there is no bleed, but considerable swelling, so she is able to identify everyone, speak, though slurred, and is exhausted.  They got her up and she walked over to a chair, had physical therapy this morning, and was worn out!  We will see what rest of today brings.

Mother In Law Surgery, Moving Command Central Upstairs

The mother in law has a rather large surgery on Monday, one all of us are looking forward to, including her.  She went to a geriatric doctor for answers to a sudden onset of dementia symptoms.  It was like the life had been sucked right out of her, no energy, no short term memory.  The doctor ordered an MRI and low and behold, she has an angiogenic brain tumor the size of a golf ball!  The tumor is the pressing on the part of the brain that controls, you got it, short term memory.  My aunt had this years ago, recovered beautifully, but she was a young woman, compared to the mother in law, who is 80.  Wish her luck, both that she comes through it ok, and has a vast improvement in her quality of life!

Thinking of kicking the boy out of his room, the smallest of the 3, would make a perfect den.  Before you call social services, I'm talking about moving from 12' x 12' bedroom, to a 24' x 15' family room with a big screen tv and private bath.  The plan is to  move the sofa bed up into my lair, buy a lazyboy swivel rocker, put command central up there with my 32" monitor!  This isn't  just whimsy, puts me on the same level as the bathrooms, eliminates the 3 steps down to the living room, kitchen, or the 8 or so more down to the family room.  Only one thing left to do, ask the wife if it's ok!

Aged Pork, And Cribbage Anyone?

Had one of my favorite meals, the mother's ham and cabbage.  She puts it all in a pot, potatoes too, and boils it for about 8 hours, killer!  We were just finishing up when she told me it was good to use up the ham, with just the two of them here she worries about it going to waste.  The ham was from Easter.  Tasted great, and I'm sure they have funeral homes on the Eastern shore.  For lunch tomorrow we are having chicken salad from new years eve!

The father and I have been playing cards, cribbage to be exact.  He beat me the first couple of days like a red headed mule, but I've come back strong and am currently holding my own.  The family has always played a lot of cards, the boy wrote a "what I did last summer" paper about playing poker with the father in a cemetery, he was 10.  The father shuffles the cards for me but shows no mercy, though he claims to when he loses.  Time to go out and see who prevails, feeling lucky!

50th Birthday Gala, and Dragon Voice to Text Program

my 50th birthday came and and went, the wife pour off another gala party one of her specialties. It was a combination birthday party, now that we are both 50, we shared the spotlight. It's always nice to get together with friends, but to be that age and have all four parents attend is particularly nice. We had food stations from around the world, and games with candy prizes from 1962, and boy were they stale! I think a good time was had by all, now to figure out which one of the party guests gave me the flu!

My parents gave me the new Dragon speech to text program, it is the coolest thing I've ever seen! It's also just a tad bit scary to think that after only reading a four-minute script this program can type out just about anything I say. I remember the first computer I bought had voice recognition software, and it was horrible! You had to read in just about the entire Webster's dictionary for the program to work, and even then it didn't work well. If only now the good people at Dragon would develop a program to cut up my steak!

Perry Hall Patch Blog, Laundry Day 2 And Memorial Day

Started writing a little blog for my community electronic news letter, The Perry Hall Patch, but they are editing what I write. Don't they know the press can't be silenced! Just another way to interact with the world around me, we shall see how it goes. I am sending an email to the editor to ask why they are changing the content.

Trying to incorporate a little bit of service into what I do, wanting to have an impact before I die. Doing the laundry thing again today, a few people asked why I was doing it on a holiday? The guys that it's being done for need it regardless of the holiday, feels good to do it. It's not much, but it's something I can handle physically, and it makes me feel good, so win win. Have a nice memorial day, I'll be spending the second have with the father in law who served in WW2, it will be the second privilege of my day!

A Great Mothers Day And Church Garden Getting Started

Great day today, the Moms sure seemed to have a nice day, though the wife worked too hard on hers. I should have pushed her out of the kitchen and taken control, but I was feeling a bit slow today, pollen is sky high, killing me, and my right eye is still all oogey. The kids aren't to the point of stepping up yet, don't remember when that happens, I was 40 before I did anything of note. a friend and her husband stopped by, didn't join us for nosh, but was good to see them just the same.

Get started on the church garden tomorrow, a bit later than I would have hoped, but started just the same. We shall have to resort to plants instead of seed, but that is not the end of the world for the size we are doing. It's just a 20x20 garden to get started, but there has already been a good bit of buzz about it. 20x20 this year, maybe 40x40 next year, or let out 20x20 spots to people and get the entire community involved. The whole idea is to get people thinking about where our food is coming from, and where it is going. Our hope is to show the community how much we can grow, and maybe they will do some, and so on, and so on, and......

Parents For Mothers Day, Lucky To Have All 4 Of Them

The parents are coming to town for mothers day, we have a weekend of fun and hilarity planned. The mother and wife are going to a ladies tea at church tomorrow afternoon, then we all go to a church dinner after that. If it wasn't for church food, we wouldn't eat! It's going to be great spending with day Sunday with all the mothers. The whole gang will be here, we are very lucky to have both our Moms, and we know it.

While the girls are tea-ing it tomorrow, pinkies in the air, the father and me will be out digging in the yard. Have some things that need to be done, the father, The 76 year old father will be here to run circles around me. The 85 year old father in law will probably be here to help. I hate them both! They are like the energizer bunnies, and I am like, what's the opposite of that? Whatever it is, I'm that. Glad they're that way, it is really something to see, as I watch from my chair!

Merry Christmas

This is the first time in 48 years I won't spend Christmas eve with my parents, don't like it even a little bit. The folks came up for my brothers foot surgery last week, they decided they couldn't make the trip again so soon from the shore, about 300 miles round trip. The wife's family will be here tomorrow and that helps a lot. We also asked a young girl who just joined our church what her plans were, she told us she had none, she will be joining us. As for tonight, the wife is in the bell choir, so we are off! Merry Christmas everyone.

Great Thanksgiving, Great Family Time

Had a great Thanksgiving! The wife's family and my parents were with us, including the girls beau, who passed with flying colors. It is always a good time, particularly nice at our age to have all 4 parents present. Miss my family on holidays, but the sister moved away and the brother is always busy or has a sick child. The wife did an incredible job, the food was out of this world, though I'm still on Atkins and only ate turkey. Lost over 40 lbs since I started, down to a skinny 287 or so. We enjoy the holidays, we have Christmas day here again, same list of suspects.

Idiosyncrasies, Broken Back, and MS Is a Thief

Idiosyncrasies are fun to look at, we all have them, some are good, some will drive ya crazy. The sister used to click her tongue, making the mother want to kill her! The grandfather used to do a triple take, so do the uncles, I think I do it too? The girl rolls her eyes, I now know how mom felt. She had her faced pierced a few months ago, I noticed she is still running her tongue over the back, asked her if it bothered her She rolled her eyes and walked into the kitchen. We'll talk when she gets home from work.

Back is broken, tried positive thinking, looking on the bright side, all that crap, but the surgery didn't do it. I'm in pain all the time, the kind of pain that I imagine when people talk about tooth pain. The father tells me he had this everyday, had it playing tennis, sitting in a boat, doing just about anything. He also always tells me he would have been famous if he had my size, so I'm not as tough as him, and I wasted my size. Anyway, I'm looking for the surgeon to either take the disk out, or kill the nerve, do something so I don't waste what time I have left for walking because my back won't let me move. I'm not worried about long term, I'm living in the moment.

I was thinking today of all the things I used to be able to do that would shock people that just met me. There was a time I could dunk a basketball. Used to be able to walk on my hands. I could hit a softball a mile, right or left handed. I know how to juggle. Loved to dance, played semi-pro football, and indoor lacrosse. Painted the parents house, 2 story colonial while still in high school. Did all the brick patio work here at this house, plus all the landscaping. I could cut a deck of cards with one hand and roll coins between my fingers. I wish that guy didn't have to go away.

Back Surgery Survived, Feeling Better Everyday

Surgery went well, lived through it, didn't cry too much. The nurses were super nice to me, got me stuff, drinks, and drugs, pretty sweet set up. The renovations to St. Joseph's hospital were pretty, but they could use an equipment upgrade as well, a lot of things didn't work, like my IV poles. The janitorial staff all were using their cell phones, like when they cleaned my room at 10 PM, not my favorite thing. I have 10 staples holding the incision shut, the mother said they couldn't glue it shut, I'm too fat! More to follow.