Mar 14, 2008

Oh, Oh! I think I wrote a book!!! Sorry!


--------------------------------------------------------------------------------

From: orlaska@hotmail.com
To: orlaska@hotmail.com
Subject: another day in the life of....
Date: Thu, 13 Mar 2008 09:42:29 +0000

I'm back by popular demand

It seems to me that every day is similar to the one before, so I think there's not anything to write about...but that really isn't true.

Yesterday (Tuesday) was a disaster.........I had a major melt down...not something I do, and don't like to admit it... especially since it started in A STORE!!! And lasted almost all the way home. It was just a little thing, but broke this camel's back!! The straw consisted of a clerk charging me about $12 too much because an item double scanned or something. But when I pointed it out, instead of mending the problem, she sent me to customer service.............where there was a line ten people deep! It was HER mistake, but I was being punished!

I think I am a little tired, and it was time to renew Stan's prescriptions. Fortunately, Phil is on spring break so he could stay with Stan while I went to WalMart. I ws trying to be frugle, but have learned that I outsmarted myself! His meds cost almost $300 for co-pay when I brought him home from the hospital at Fred Meyer's...so I thought I'd try Wally's World. Surely that would be cheaper!! After being told..."ten minutes, and I'll call you"...waiting 25 minutes and asking "how much longer?".... being told "they're being bagged up right now, have a seat and I'll call you"..... another fifteen minutes, more asking.... discovering there were meds being filled that I no longer needed, one that he hadn't even been on since before the stroke, etc...getting that all straightened out and feeling pretty good that the final bill would be much lower than last time (since I wasn't even buying nearly as many items)..... finally getting checked out, and being told it would cost $389.00!!! HOW could this be??? A hundred dollars more than last time, but only 2/3 the amount of meds!! I refused the order, went to pay for my other items, and that is where the Customer service came in....with ten people in line!!

Our drive way is a sheet of ice with a touch of melted water on top of it.....so after I backed down ONCE, I wasn't too anxious to try my luck a second time.....SOOOOO... when I realized I had left my glasses in the house, I "determined in my heart" to get home before dark. (My "bad" eye doesn't do well with lights at night without a corrective lens.) That and all the delays at WalMart and knowing I was going to have to "sleep" on my problem all night, spend today (Wednesday) calling the doctor, pharmacy, and insurance company.... I just lost it! Maybe it was the knowledge that I would have no time for a Costco stop and that Polish Dog for dinner that got to me!!

I did make all the calls, got Stan's meds "reordered" this time from Fred's, and even had Andy wanting to pick them up for me so I wouldn't have to slide down our driveway! (I just remembered.... yesterday STARTED with a missing newspaper! That is NO WAY to start the day!)

When I priced the meds so I would know what to tell Andy to expect, I was told the antibiotic for Stan's mastoiditis would cost $296.60. I thought she meant the cost before insurance! She quoted me all the $30s, $7s, etc that I would be paying and kept saying $296.60 for the one. When I told her the last two times I filled that one it was $30 each time. She told me to check with my insurance company. She couldn't do anything about it. Well, I called AARP....and got a royal education! Once Stan used $2500 up, the insurance put him in a new bracket. Until we reach $4050...we were on our own...full price!! Half of his meds full prices are in the one to three hundred plus dollar range. It will only take refilling them one more time to reach that $4050 goal. The good news then is that for the rest of the year, we will just be charged $5.60 or 5% of any med. It will start over again in January.... I am still having "sticker price" shock! But NOW I KNOW why WalMart's price was so high. So, MAYBE WallyWorld was a little cheaper in actual fact!! Oh well....I am now $426 poorer, and know that next time the bill will be full price for all the meds...easily reaching the $1550 amount that will put us back on the "cheap track." Wheeeeee!! I guess the lesson here is: DO NOT GET SERIOUSLY ILL!

I really can't complain, I've had very little to pay for all the time spent in the hospital. His bill at Regional for just the hospital, no doctors, was over a million!! Medicare and AARP have covered almost all of that! Then he had an equal time at St. Elias (only not CCU!) but he did have an MRI, CAT scan, and sonogram while there. And I was told they only charged what medicare pays. The multitude of specialists involved have so far sent bills that say pay 0.00. So I can cope with $1550 one month of each year for meds, I guess. Sure makes me worry about those with no insurance, tho!

I think I am "too close" to Stan to notice the little changes that take place each day. I try to assess any improvement etc, but it takes a visitor that hasn't seen him for a while to exclaim about how good he is doing.

I have found that I can manuever the Hoyer lift by myself, and keep him quite comfortable while doing so. It is much easier to change his sheets, etc. with him OUT of the bed, so I have him "hanging around" while I do the job.

The therapists have had him in the wheel chair (and we wheeled him to the open front door so he could see the snow!). Yesterday (before I went to the store) there were two here together. They had him sitting on the edge of the bed. He can't balance himself when he is trying to, but when we would distract him...like having him pet the cat....he would sit without us holding him up. The plan here is to get those trunk muscles stronger. Remember, he hasn't used them for four months.

Today (Wednesday) the speech therapist and I got him lifted over into his recliner, and he worked with her quite well. Often he is too tired and falls asleep while she is trying to get him to do things. It really is interesting. She brought electrical wire (thought he'd get a kick out of that) that she strung across the room over him. She had wooden beads about the size of a quarter that he had to move with his good hand as far to the left as he could. ...one bead at a time, unless she told him otherwise. He has a tendency to "follow orders" immediately when she tells him something. Except she is trying to slow down the fast speech, and the impulsive movements, so he isn't supposed to DO what she says until she says "START." She had a sock, the tv remote, his glasses, a pencil, and a wash cloth on a lap table and told him to put the wash cloth on his glasses and then the pencil on top of them. He started doing it before she even finished talking. She stopped him and reminded him she hadn't said "start" yet... He stopped and waited and did a great job. It is fascinating the simple little "tricks" she uses to exercise his mind and his sight.

Phil and KaCee ordered pizza delivered last night from Dominoes, and today Grace made homemade pizza and they came in for a visit. She was wonderful working on his range of motion exercises. He dearly loves having Luke and Cannon around.

And so goes our days..... washing, feeding, changing, crushing meds, running the washing machine and dryer and dish washer, and "entertaining" the influx of Home Health personnel that come on a regular basis five days a week. (This is in addition to regular house work. My windows are becoming opaque!!)

Will I ever sew again?? More to the point, will Stan ever walk again?? That is our most important goal that we are striving for. God has blessed us so much, that I certainly am NOT doubting ....

All in all, this should be an encouraging report. He is a good patient....but a noisy one. He makes lots of noises, but they are a joy to my ears after how many weeks of NO sounds coming from him!!!

(Hmmm, did you know if you get your right hand off by one key when typing that "I have..." becomes "U gave..."? Okay, I guess it is more than just the right hand goofing off here...since that g is typed with the left hand!!) (Just a little trivia for your enjoyment and edification.)

I think I was starting to say, "I have received many helpful hints on making Stan more comfortable." when that little "U gave" topic appeared on my screen and got me off the subject! Sorry...

Everything from carrot juice, flax seed oil, Texas cathetars, and memory mattresses! Thank you all.... How can we not succeed when God has provided us with so many loving friends!!! Two of you told me about vegetable oil on the syringe...and VOILA! What a difference....sure makes feeding time much much easier!

We love you all and thank you so much for being there for us...whether it is a helpful idea or an encouraging word.... We FEEL your prayers, believe me!!

Love, M

p.s. Too often lately I am having to "say goodbye" to a loved one....one of the "downsides" to spending so much time in Tulsa. I made many friends, and it seems like one by one, their battles with that horrible disease are coming to an end.

P. P. S. Stan and I were rooting for Lance Mackey to win the Iditarod this year....and HE WON! He is a cancer survivor, and he did the "impossible" last year, by winning the Yukon Quest and the Iditarod back to back. The experts all said it couldn't be done. Then they said it was a fluke! So we thought it would be super if he "showed them" he could do it again. The "fun" part here is, his rival Jeff King had more dogs and a faster team this year and kept right on Lance's heels for a thousand miles. Jeff passed him once, and at least once slept with his feet on Lance's boots so it would wake him if Lance woke and decided to get going. BUT that fateful time in Elim, close to the finish... Lance knew to win he would have to stretch that lead from seven minutes to over an hour somehow. So he had his dogs all attended to and lay down to sleep when Jeff arrived. He lured Jeff into thinking it was safe to take a nap...but as soon as Jeff snored ONCE, Lance was up and on the trail. When Jeff woke half an hour later and still had to get his team harnessed up etc.... Lance was the winner unless something unforeseen happened. It didn't...and Lance once again showed that YOU COULD win the Yukon Quest and the Iditarod in one year. (They are both at least a thousand miles long, and only about ten days apart. ) Okay...I'm going to bed!!!

pps!!! Well, it is now late late Thursday night (3 a.m. Friday). Not sure why this hasn't been sent yet, but I thought I'd add today's activities before sending now. The day started about five, and seven, and .... then at 8 Deryl called about coming for a visit. I had gone back to bed for an hour from seven to eight, still needed a shower and to feed Stan bfst, nurse coming at 11, OT and PT at noon, and Judy (to bathe him) at 2. Kathy was coming at 3 to "whisk me away" for some girl time (and a couple of chores.) So Deryl is coming Friday! He said he had some great news for us, but would not give me a hint!! That, of course, is cruel and unusual punishment....everyone knows I am much too curious to be told to WAIT a full day for NEWS!!

It was a new nurse, and she had a hard time getting his INR taken, but it was a good number...2.0 for those that know these things. I do not like coumadin, and he is still on five mg per day.... The OT and PT worked with him together but didn't get him up this time. I guess I should tell you a "Funny" about their visit on Tuesday. The PT is kind of a "rough" diamond... and used a word (starts with S) that isn't something I like to hear. A few minutes later she used the word "kapish" (sp??) and I said, "Now that is a word Stan understands. I think he got it from my dad, and he often says it. But that S word is one we don't use in our house." I was laughing to hopefully take the "sting" out. It wasn't my intention to hurt her feelings, but I did want her to know it really isn't something to say around us. She took it well, apologized, and I don't think we'll have to hear it any more. I am almost positive it is the only time this house has "heard" the word. Or the cat.... I am pretty sure neither will repeat it!

Judy and I got Stan into the Hoyer lift while we changed the bedding. That thing is a miracle worker!!

Stan's regular doctor's office called to see how I made out this time with the purchase of the meds. The call came from a young man named Draper. When I told him that for some reason neither WalMart or Fred's filled the prescription for Nexium (acid reflux pill), and that I checked on the Protonix we have here .... the AR med he took before the stroke....but it said "DO NOT CRUSH...swallow whole" I was afraid to use it. He has to have it crushed, he cannot swallow a pill. So I asked if it was all right to just not get that one for a few days to see if he had any AR problems. I told him about the "new" cost of meds, and that Nexium costs over $300 for 30 pills. Draper told me they had some samples of Nexium that he would gather up for me!

Kathy came in time for us to get by the doctor's office in time to pick up the Nexium, and to get to the Lake Otis Pharmacy before they closed. There she asked for Joe.... She and he had already "met" over getting certain items to make mine and Stan's daily life much easier. There are a couple of things on the market that make putting in a cathetar unnecessary. Joe had a box (gross...144) of one item that he would sell us for a dollar each instead of the marked five dollar price. BUT... when we got there, he had actually sold them to a "glider plane" pilot that day. He thought Kathy had decided against them for the other item....a $76 clamp. But Kathy and I had discussed the clamp for daytime and the Texas cath for night. The pilot hadn't picked the box up yet, so Joe is going to talk him into just taking half the box and letting me have the rest. When he got his catalog out to order the additional supplies for the Texas Cath (tubes and bags) and I asked "how much" when he asked "how many"...Kathy told me that she was carrying a check from the church to pay for these things. I kept in control, but just barely..... I really don't like to cry, and especially NOT in front of anyone!! But the tears (this time not in frustration, but from love) were really trying to escape.

What "they" probably don't know.... these things will also save us several dollars every month, as they will eliminate the need for so many "Depends" and under pads.... that have cost in the short time Stan has been home around $200....and we brought several of each home from the hospitals. (You should have seen the bag of supplies we got just from his room at Regional before going to St. Elias! Once something was in his room, it couldn't be used for another patient.... but of course, this supply ran out rather quickly....so I got to check out WalMart and Fred's cost.)

We are so blessed.... and please don't worry. Right now we are able to "withstand" the cost. If this had happened a few years earlier, I don't know what we would have done. Our income is stable since Stan was already retired, and medicare actually pays more than our insurance would have. (It doesn't really seem "fair" but they only pay a fraction of the actual bill, and the doctors and hospitals cannot charge more than medicare allows. That is why so many doctors limit their medicare patients. It took me two days of calling to find someone willing to take Mom when she moved in with us. At that time I was VERY frustrated with medicare, but now I am thankful. Thankful, too, the way God DOES take care of us!! (I did find a real jewel for mom....she loved him. A little guy from Poland who went to visit his mother there 3 or 4 times a year...and treated mom like his own mother. I gave him Mom's adjustable cane for his mother when she could no longer use it. He happened to mention he hoped to get off work before the stores closed as he was leaving that night for Poland and wanted to get an adjustable cane!) I can't pronounce or spell his name....but we were certainly blessed to find him.

After our visits to the offices for the pills and "items," Kathy and I had to decide WHERE to eat. Phil was staying with Stan so I could have the evening "out." We indulged ourselves at the Lone Star steak house....and then went home to marvel over yet another gorgeous Alaska sunset!! The view from our house is so wonderful. It is my wish that everyone of you could see at least ONE of them from our windows!! Stan can actually see the sunset from his bed.... isn't that wonderful!!!

Now I am going BACK to bed.... I had just got up to change and adjust him, and decided it would be a good thing to get this sent!

Love (again!), M