Wow - just read this on Yahoo: http://shine.yahoo.com/channel/sex/mother-in-law-sends-worst-email-ever-to-bride-forgivable-2504517/Viral Future Mother-in-Law
And the wedding hasn't even happened yet.
It reminds me of a meeting with my future mother-in-law - not nearly so horrid, and she has mellowed with time and is now a pleasant frail little old lady.
But that meeting was one for the books. We had gone to my parents first and my future hubby did all the old fashioned things - like actually asking my Dad for permission to marry me. And then they had the usual back and forth conversation, like, "How do you expect to support my daughter?" "What if she gets pregnant before you two graduate?" (We were both juniors in college and would have one more year to go before graduating.)
Then we went to his parents, and while my future father-in-law was dizzy with pleasure at gaining a new daughter that he thought was sweet as pie, my future mother-in-law grilled me much more intensely than my Dad grilled my future husband. She wanted to know how I was going to support my husband if I (shock of shocks) DARED to get pregnant before we graduated. And it went down hill from there. Like, "Do you even know how to cook?"
We married, graduated, had two children, and seven years later (when the boys were 2 and 3), he left for another relationship - and it had nothing to do with my cooking.
Later, at his Dad's funeral, my ex-husband told me that I was the lucky one because I got to divorce his whole family. (I kind of thought of that, once the divorce was final. There are some things you are really pleased to lose.)
.
6.30.2011
6.28.2011
5.27.2011
Dithers, Drama, & Duldrums
Ok, I know you didn't ask, but I'm going to say it. I am starting to NOT have fun with this dialysis thing. Do you know there is even a website called "I Hate Dialysis" here???? It's actually quite good - not a pity party but an empathy party. Nobody knows like someone else on dialysis. There is so much stress. So much anger. So much sadness. So much really icky stuff. You try to minimize it and not make it the center of your life - but there it is. You have to watch WHAT you eat. You have to watch HOW MUCH you eat. Your list of what you CANNOT eat is three pages long, while you can put on a little post-it note what you CAN eat (white rice, unsalted green beans, and Mandarin oranges, or any combination thereof). You have to watch your blood pressure and hope that while you are on dialysis, it doesn't crash - which happens so much that when the alarms go off, you have to look at your own machine to find out if it is you or not. Of course, if you really crash, you're unconscious, so you don't even give a rip.
Now, because I want a particular method of dialysis called the Buttonhole, (where two needles are inserted in the same two holes over and over until they create a channel, or track, much like the holes for earrings), I need the same technician over and over to create that track. And there is no guarantee that I will always get the same technician. So, I am (dramatic drum roll) DOING THE NEEDLES MYSELF.
I am in training, but it is hands' on. A nurse guides me. I have had three sessions this week, and only the first one was successful. I missed the track of the second needle on Wednesday and had to start over, and today, I made it, but nicked the vein and had to withdraw the second needle and use my temporary site (a catheter in my chest) for the second tube.
First - it hurts.
Second - it is overwhelmingly stressful.
Third - you have to hold off the two sites at the end for ten minutes to be sure they won't bleed. Wednesday, I was done, got up, and blood started to gush. I had to re-hold for another ten minutes.
Fourth. Time D.R.A.G.S. when the needle isn't in right and is touching a nerve and you sit there for three and a half hours in pain. I'm talking a TEN, on a scale of one to ten. I am THIS close to having them take me off early - which wouldn't help me in the long run. (Now I understand why the corporate headquarters' nurse asks me if I have skipped any treatments. Before this, I thought why would I do that????)
So - this is my sad tale. I'm just no fun.
.
Now, because I want a particular method of dialysis called the Buttonhole, (where two needles are inserted in the same two holes over and over until they create a channel, or track, much like the holes for earrings), I need the same technician over and over to create that track. And there is no guarantee that I will always get the same technician. So, I am (dramatic drum roll) DOING THE NEEDLES MYSELF.
I am in training, but it is hands' on. A nurse guides me. I have had three sessions this week, and only the first one was successful. I missed the track of the second needle on Wednesday and had to start over, and today, I made it, but nicked the vein and had to withdraw the second needle and use my temporary site (a catheter in my chest) for the second tube.
First - it hurts.
Second - it is overwhelmingly stressful.
Third - you have to hold off the two sites at the end for ten minutes to be sure they won't bleed. Wednesday, I was done, got up, and blood started to gush. I had to re-hold for another ten minutes.
Fourth. Time D.R.A.G.S. when the needle isn't in right and is touching a nerve and you sit there for three and a half hours in pain. I'm talking a TEN, on a scale of one to ten. I am THIS close to having them take me off early - which wouldn't help me in the long run. (Now I understand why the corporate headquarters' nurse asks me if I have skipped any treatments. Before this, I thought why would I do that????)
So - this is my sad tale. I'm just no fun.
.
5.18.2011
Lady Bug, Lady Bug, Birds & Bees
So, I checked out my newspaper box (the old orange SR box), and it was covered in Lady Bugs, my favorite little critter of all. I always think of them as pretty little ladies, prim and proper. But before my eyes, I see that all of these Lady Bugs are in pairs - one on top of the other. I clapped my hand over my mouth when it suddenly occurred to me that they were. . . . . . .
HAVING SEX!
Oh my God, that's almost like when I found out my parents "did it." (This was early puberty and after the initial shock, it didn't bother me any more, except I really didn't want to go into their bedroom for anything.)
So, I left the paper in the box and came into the house. I think they need their privacy.
Who knew????
(It is a little disturbing to realize that Lady Bugs aren't all ladies.)
.
HAVING SEX!
Oh my God, that's almost like when I found out my parents "did it." (This was early puberty and after the initial shock, it didn't bother me any more, except I really didn't want to go into their bedroom for anything.)
So, I left the paper in the box and came into the house. I think they need their privacy.
Who knew????
(It is a little disturbing to realize that Lady Bugs aren't all ladies.)
.
4.28.2011
Birthday Thoughts
Things about April 29 that are very important to me:
* It is my birthday. I have always liked having my own day.
* I am sharing it (unwillingly, I might add) with Prince William and Kate Middleton. I will always remember that it is their wedding anniversary. And I hope they take it to heart that it is MY day and that they need to tie the knot well, and permanently, because I will always remember. Always.
* It also is the date that I can officially take my social security. Which means I can kind of ignore the fact that I'm on disability and can now toss that negative term down the old life tube. I am no longer "disabled" - I am retired.
* I also share this day with my nephew - which is perfectly fine. I know where he lives and he'll honor me for the rest of his days.
* My son's birthday is the day after mine (he was due on my birthday but God knew how very important my own day was to me and He felt that my son deserved HIS own special day). He will honor me for the rest of his days.
* Please note - I celebrate my birthday for a whole month. I expect honor, respect, bowing, and courtseying. Consider me The Queen.
The Queen of the Universe has spoken.
.
* It is my birthday. I have always liked having my own day.
* I am sharing it (unwillingly, I might add) with Prince William and Kate Middleton. I will always remember that it is their wedding anniversary. And I hope they take it to heart that it is MY day and that they need to tie the knot well, and permanently, because I will always remember. Always.
* It also is the date that I can officially take my social security. Which means I can kind of ignore the fact that I'm on disability and can now toss that negative term down the old life tube. I am no longer "disabled" - I am retired.
* I also share this day with my nephew - which is perfectly fine. I know where he lives and he'll honor me for the rest of his days.
* My son's birthday is the day after mine (he was due on my birthday but God knew how very important my own day was to me and He felt that my son deserved HIS own special day). He will honor me for the rest of his days.
* Please note - I celebrate my birthday for a whole month. I expect honor, respect, bowing, and courtseying. Consider me The Queen.
The Queen of the Universe has spoken.
.
4.14.2011
The House
We went to an estate sale today and it happened again. I go into someone else's house and imagine if it were mine. I think this is because I live in a little tiny house that is not even big enough for me, let alone engine-lifting, car-moving Mechanic Man. This house had it all - it had the wrap around deck/patio. It had a two car garage. It had a shop that was two stories tall and big enough to probably work on ten cars all under cover PLUS a 20 foot windowed office. The kitchen looked over the back yard and patio (and shop, in case Mechanic Man got lost in there, and I could have an inkling of where to find him). (Note to self: need to plant GPS bug on Mechanic Man.)
Homemade soup was being made in the kitchen for the relatives having the sale. The cook kept going in and out while I was looking at stuff (like I need MORE stuff). I told her I was staying for lunch because there were so many people there, nobody would know a stranger was sitting down at the table. She laughed. But I was serious! Still, Mechanic Man took my hand and said, no, we had to go back to our little hovel and try not to step on each other.
I was envisioning whole rooms for different me's. A craft room (not that I am crafty but I AM working on a scrapbook with my dinner group). A music room where the piano is not covered with boxes that we haven't put in storage yet, because if this were MY house, all that stuff would be on the second floor of the massive shop. A library! (And then I could actually keep all those thousands of books that I don't want to give to Goodwill.) A guest bedroom complete with made bed. A second bathroom (a his bathroom and an everyone else bathroom and I'd only really pay attention to cleaning the second bathroom since the first "his" bathroom is hopeless and I don't want anybody else going in there. ever.) A walk-in pantry. A mud room. A computer room. Rooms! Many rooms!
So, here I sit on the couch, which is my reading room, computer (lap top being on my lap) room, tv room, and music room, even though the piano is covered with boxes.
Tomorrow we are going to more yard sales and estate sales and imaginary this-is-my-home sales.
.... And a laundry room.
.... And maybe a full basement.
.... A den?
.
Homemade soup was being made in the kitchen for the relatives having the sale. The cook kept going in and out while I was looking at stuff (like I need MORE stuff). I told her I was staying for lunch because there were so many people there, nobody would know a stranger was sitting down at the table. She laughed. But I was serious! Still, Mechanic Man took my hand and said, no, we had to go back to our little hovel and try not to step on each other.
I was envisioning whole rooms for different me's. A craft room (not that I am crafty but I AM working on a scrapbook with my dinner group). A music room where the piano is not covered with boxes that we haven't put in storage yet, because if this were MY house, all that stuff would be on the second floor of the massive shop. A library! (And then I could actually keep all those thousands of books that I don't want to give to Goodwill.) A guest bedroom complete with made bed. A second bathroom (a his bathroom and an everyone else bathroom and I'd only really pay attention to cleaning the second bathroom since the first "his" bathroom is hopeless and I don't want anybody else going in there. ever.) A walk-in pantry. A mud room. A computer room. Rooms! Many rooms!
So, here I sit on the couch, which is my reading room, computer (lap top being on my lap) room, tv room, and music room, even though the piano is covered with boxes.
Tomorrow we are going to more yard sales and estate sales and imaginary this-is-my-home sales.
.... And a laundry room.
.... And maybe a full basement.
.... A den?
.
4.09.2011
Farewell To My Identity
I went through my closets and pulled out my prized possessions - several very expensive dress suits that I looked hot in and worked hot in. When I put one of these power suits on, it was like putting on armor. I grew. I flew. I was Power Jeanie, Secretary Extraordinaire. I swear that I could type faster, think sharper, and could toss the grammar book down the elevator shaft because my power suit was ON. People looked at me in awe - I was that good. A professional secretary with crisp lines, brain at snap attention, focus on the prize - a job well done by a super human machine.
I gave them away today to a sweet friend (thank you so much, Ginny) who will delegate them out to a women's transition group where women are stepping back in to the work force.
My very first reaction to watching my suits roll out the door was to sob! I think one of those suits was still wearing my heart on its sleeve. And then there was the huge relief of letting go of one more thing to make a decision about. It's done. I have one more task done. I need a personal coordinator. That brought another sob.
O boy - this business of cleaning house and paring down my stuff to a manageable small pile is just so emotional!
And I haven't even tried to tackle the prized possessions of thousands of books. All books I have read. All books I plan to read again. All mine, mine, mine. All real - no Kindle here. All made of paper and ink. All dog-eared and comfortable in my hands. All alive with characters and adventures and mysteries.
(Sigh)
.
I gave them away today to a sweet friend (thank you so much, Ginny) who will delegate them out to a women's transition group where women are stepping back in to the work force.
My very first reaction to watching my suits roll out the door was to sob! I think one of those suits was still wearing my heart on its sleeve. And then there was the huge relief of letting go of one more thing to make a decision about. It's done. I have one more task done. I need a personal coordinator. That brought another sob.
O boy - this business of cleaning house and paring down my stuff to a manageable small pile is just so emotional!
And I haven't even tried to tackle the prized possessions of thousands of books. All books I have read. All books I plan to read again. All mine, mine, mine. All real - no Kindle here. All made of paper and ink. All dog-eared and comfortable in my hands. All alive with characters and adventures and mysteries.
(Sigh)
.
4.07.2011
Do You Wear Your PJs to Work?
Recently I posted on Facebook that I was spending the afternoon in my PJs while I was doing the laundry (mainly because I needed to wash my favorite comfy jeans that I usually don’t relinquish very easily). A few people responded, and one noted that I’d be surprised how many places she wears her PJs. So, do you wear your PJs in unconventional places?
I have been able to go out in the summer in pretty PJ bottoms with flower prints, or Betty Boop, or Mickey Mouse, and pretty much go wherever I want – to the store, to the post office, for a walk – and nobody is any wiser. At least that is what I tell myself. Maybe people are whispering to each other about how loony I am to go out in public in my pajamas.
My next door neighbor, a man in his 70s, mows his lawn in his striped pajamas (tops and bottoms). He looks perfectly normal and at home. Because, well, he IS at home. But still.
We had a lady that came into dialysis at 6:00 in the morning in her pajamas. I envied her. Then I started coming in at the same time and found myself slipping slowly into the relaxed dress of slippers. Then pj bottoms. And so now there are two Pajama Ladies. I mean, who’s going to see us??? We’re half asleep anyway and if we are lucky, we’ll go back to sleep while we are sitting there and sleep through the whole thing and wake up three and a half hours later, fully rested, refreshed, cleansed, and refilled. Can’t get any better than that.
Friends were recently discussing their “pajama days” where they just putter around the house in their pj’s and bunny slippers, sipping coffee, eating sweet rolls, reading a book, and doing nothing all day long but enjoying their own company. Never dressing up like an adult. This is the life!!!
So, I’m on my way to Walmart (where I’m pretty sure the dress code is pajamas) to find myself a new pair, since I’m wearing out the one I love (and I need to have one to wear while I wash the other one). I’m planning a Pajama Day a week!
.
I have been able to go out in the summer in pretty PJ bottoms with flower prints, or Betty Boop, or Mickey Mouse, and pretty much go wherever I want – to the store, to the post office, for a walk – and nobody is any wiser. At least that is what I tell myself. Maybe people are whispering to each other about how loony I am to go out in public in my pajamas.
My next door neighbor, a man in his 70s, mows his lawn in his striped pajamas (tops and bottoms). He looks perfectly normal and at home. Because, well, he IS at home. But still.
We had a lady that came into dialysis at 6:00 in the morning in her pajamas. I envied her. Then I started coming in at the same time and found myself slipping slowly into the relaxed dress of slippers. Then pj bottoms. And so now there are two Pajama Ladies. I mean, who’s going to see us??? We’re half asleep anyway and if we are lucky, we’ll go back to sleep while we are sitting there and sleep through the whole thing and wake up three and a half hours later, fully rested, refreshed, cleansed, and refilled. Can’t get any better than that.
Friends were recently discussing their “pajama days” where they just putter around the house in their pj’s and bunny slippers, sipping coffee, eating sweet rolls, reading a book, and doing nothing all day long but enjoying their own company. Never dressing up like an adult. This is the life!!!
So, I’m on my way to Walmart (where I’m pretty sure the dress code is pajamas) to find myself a new pair, since I’m wearing out the one I love (and I need to have one to wear while I wash the other one). I’m planning a Pajama Day a week!
.
3.19.2011
Bling! Bling!
Driving along a lonely stretch of road, there on the shoulder, was a solitary little pine tree, with a bright red glossy Christmas ball hanging alone on a branch.
.
.
3.17.2011
Loss and Grief and Dinner
I had dinner with my four friends last night – this is my support group and my bonding group – the ones I play with, cry with, commiserate with, conspire with. There is so much grief and sorrow in our group lately. I left last night feeling depressed and at loss. One of our group, Jackie, shared with us the stress and worry over her son-in-law, who has gradually, slowly, and resolutely lost his vision over several years. He is only 40. They have tried everything, seen every doctor, done every test, tried injections and other mystery meds, trying to save his sight. But to no avail. It stresses the family – the children are suffering – in their early teens and watching their beloved Dad lose one of the five senses that is probably the most important. I cannot imagine this.
Then there is Kathy, whose Parkinson’s is getting worse and more pronounced. She plods along, literally one step at a time, moving forward and remaining positive. I bowl with her (and Jackie) and I notice more tremors. Her once really high bowling average is now 158 (but much higher than my 103). But she remains positive and proactive – paying special attention to any changes and in her monthly meetings with her specialist, informs him of the updates. He has told her that all his patients seem to know much more intimate details of their progressive decline than he does.
Then there is Sharon, whose Lupus has deteriorated in different ways – making her joints ache, causing her difficulty in breathing, causing her to tire much more easily.
And me – while I move on to a different way of receiving dialysis, which requires two large needles every time. I am dreading it – start on Monday.
Anyway – it just seemed like LOSS was the theme for the evening. We have all lost parts of ourselves, and the stress bleeds over to our friends and our family. Mechanic Man holds on – but inside he is brewing, angry at whatever is out there that makes people he loves have to go through processes to keep them alive.
It is hard sometimes to keep “up” when everything seems to be spiraling out of control.
And yet, at the end of dinner, after all the crying and laughing and sharing, we hugged each other close, even though we will see each other in a week. These are my sisters of my heart. We share, love, and empathize, feel each other’s pain.
.
Then there is Kathy, whose Parkinson’s is getting worse and more pronounced. She plods along, literally one step at a time, moving forward and remaining positive. I bowl with her (and Jackie) and I notice more tremors. Her once really high bowling average is now 158 (but much higher than my 103). But she remains positive and proactive – paying special attention to any changes and in her monthly meetings with her specialist, informs him of the updates. He has told her that all his patients seem to know much more intimate details of their progressive decline than he does.
Then there is Sharon, whose Lupus has deteriorated in different ways – making her joints ache, causing her difficulty in breathing, causing her to tire much more easily.
And me – while I move on to a different way of receiving dialysis, which requires two large needles every time. I am dreading it – start on Monday.
Anyway – it just seemed like LOSS was the theme for the evening. We have all lost parts of ourselves, and the stress bleeds over to our friends and our family. Mechanic Man holds on – but inside he is brewing, angry at whatever is out there that makes people he loves have to go through processes to keep them alive.
It is hard sometimes to keep “up” when everything seems to be spiraling out of control.
And yet, at the end of dinner, after all the crying and laughing and sharing, we hugged each other close, even though we will see each other in a week. These are my sisters of my heart. We share, love, and empathize, feel each other’s pain.
.
3.08.2011
Hi Costs, Hi Insurance, Hi Anxiety, Bye Money
Just now, I noticed all the media attention on the Idaho Medicaid hearing going on. It’s not just Medicaid, but Medicare, health insurance, medical costs, pharmaceutical prices, the recession, so much that just adds to my stress level in a very unhealthy way.
When I first started dialysis, I had the blessing of a staff at the center who manages all my financial worries. It’s a huge relief. Dialysis costs around $250,000 a year per patient. It’s a booming business. But how much of that is actually the cost of running dialysis? That $250,000 is what insurance companies, and also Medicare as secondary insurance, pay – so what was it originally? I ask this because three weeks into dialysis, I went to Orlando and vacationed near a different dialysis center and later was billed for $8,000 for the week. (My center is $12,000 a week.) When Premera wouldn’t pay (because it was “out of network”), the Orlando center sent me a new bill, written down to $800. That is 90% of the total bill. Then, after I paid $100, they zeroed out the balance. So, dialysis for the week cost me $100.
Another little tidbit: A transplant costs around $500,000. Medicare will cover a dialysis patient for the rest of their life on dialysis at $250,000 a year. Medicare will cover the prescriptions (usually around $3,000 a month) for three years post-transplant, around $100,000, and then NOTHING. So, think about this for a second. I can be on dialysis for 30 more years ($7,500,000 – that’s seven MILLION, five hundred thousand). Or I can have a transplant with the initial cost of $250,000 to $500,000, plus three years of medication (which is required to keep my new kidney from rejecting, and that I need to keep taking for the rest of my life, not just for three more years).
My family has a genetic kidney disease that causes End Stage Renal Disease which is fatal if not for dialysis or a transplant. Two of my siblings have had transplants. My sister was doing well until the three-year period had passed, when she became solely responsible for her medication costs. She lost her job because she was out sick too many times (the result of other people’s “common cold” where she would end up in the hospital to save her kidney). (Fact: most people on dialysis lose their jobs because of all the time they are unable to be at their desks). She felt the only recourse was to sell her house, become indigent, and eventually become eligible for Medicaid because Medicare quit after three years post-transplant.
My brother had a transplant five years ago this April. The following is part of an email he just sent to me. I am fearful that the pending health care reform will further hurt the thousands upon thousands of people dependent on drugs or treatments to keep them alive. Will we all become expendable and our expiration tags pulled?
********************
Last Monday I called Group Health Pharmacy to verify that they would not bill a 3rd party drug provider, which they will not. Then I insured that they would be able to fulfill my prescription of cinacalcet at 90MG, once a day and that I would be able to pick up a 90 day supply, verifying that I would indeed need to pay $1954.50 up front. Tuesday I showed up at the pharmacy and the young lady at the counter showed up with the bottle, rolled her eyes and said, "Yikes!". This was the same reaction I got from the pharmacy clerk at Costco, where I had gone to pick up this prescription on the previous Saturday. As an aside CostCo couldn't sell it to me because when they ran my Group Health card the latter refused the payment stating that I had to go to the Group Health Pharmacy for this purchase (those assholes [Group Health] are really on my shit list, btw). Then the afore mentioned young lady said, "Do you know how much this is going to cost?" I dead panned her with my now stock answer, "It's that or die." There is no real come back for that. Then the young lady told me it would be $651.50 - to which postal, nuclear bombs went off inside me (that is a 30 day, not 90 day supply).
Now I know it wasn't her fault, however the previous day I had spent almost 1 1/2 hours on the phone with three different people from Group Health verifying that the prescription would be correct and waiting when I showed up. Really. How does Joe Paying Customer get a mega buck giga corp to listen to him? It wouldn't be that huge, but I have already been shunted down to their pharmacy rather than a pharmacy of my choice, and once I get home I call my 3rd party to tell them I have the drug in hand and would they please send a reimbursement form, which takes 7 to 10 days to arrive, which I then have to fill out, affixing the original receipt plus the sticky prescription label from the bottle, then mail and wait an additional 4 to 6 weeks for reimbursement. Now, because they only coughed up 30 days I have to do this all again on April 1.
Anyway, bottom line, the drug costs $1303.00 per 30 day supply. Group Health will pay 1/2 leaving $651.50. The 3rd party (which happens to be the drug manufacturer) will then pay $500.00 leaving me with the remaining $151.50 per month for this single medication. That is on top of an addition $66.66 for the rest of my medications for a total of $218.16 per month. It could be worse, but, damn - that is coming close to a car payment, and the Wife really needs a new car.
However, the reimbursement form arrived in yesterday's mail which made it only 7 days and I have filled it out affixing all required labels. So, now that Susan Delfino (of Desperate Housewives) is going to be getting her transplant (oh, poor thing) I wonder if the writers will bother following up on how that only solves this handful of problems, but creates a whole new set to deal with.
.
When I first started dialysis, I had the blessing of a staff at the center who manages all my financial worries. It’s a huge relief. Dialysis costs around $250,000 a year per patient. It’s a booming business. But how much of that is actually the cost of running dialysis? That $250,000 is what insurance companies, and also Medicare as secondary insurance, pay – so what was it originally? I ask this because three weeks into dialysis, I went to Orlando and vacationed near a different dialysis center and later was billed for $8,000 for the week. (My center is $12,000 a week.) When Premera wouldn’t pay (because it was “out of network”), the Orlando center sent me a new bill, written down to $800. That is 90% of the total bill. Then, after I paid $100, they zeroed out the balance. So, dialysis for the week cost me $100.
Another little tidbit: A transplant costs around $500,000. Medicare will cover a dialysis patient for the rest of their life on dialysis at $250,000 a year. Medicare will cover the prescriptions (usually around $3,000 a month) for three years post-transplant, around $100,000, and then NOTHING. So, think about this for a second. I can be on dialysis for 30 more years ($7,500,000 – that’s seven MILLION, five hundred thousand). Or I can have a transplant with the initial cost of $250,000 to $500,000, plus three years of medication (which is required to keep my new kidney from rejecting, and that I need to keep taking for the rest of my life, not just for three more years).
My family has a genetic kidney disease that causes End Stage Renal Disease which is fatal if not for dialysis or a transplant. Two of my siblings have had transplants. My sister was doing well until the three-year period had passed, when she became solely responsible for her medication costs. She lost her job because she was out sick too many times (the result of other people’s “common cold” where she would end up in the hospital to save her kidney). (Fact: most people on dialysis lose their jobs because of all the time they are unable to be at their desks). She felt the only recourse was to sell her house, become indigent, and eventually become eligible for Medicaid because Medicare quit after three years post-transplant.
My brother had a transplant five years ago this April. The following is part of an email he just sent to me. I am fearful that the pending health care reform will further hurt the thousands upon thousands of people dependent on drugs or treatments to keep them alive. Will we all become expendable and our expiration tags pulled?
********************
Last Monday I called Group Health Pharmacy to verify that they would not bill a 3rd party drug provider, which they will not. Then I insured that they would be able to fulfill my prescription of cinacalcet at 90MG, once a day and that I would be able to pick up a 90 day supply, verifying that I would indeed need to pay $1954.50 up front. Tuesday I showed up at the pharmacy and the young lady at the counter showed up with the bottle, rolled her eyes and said, "Yikes!". This was the same reaction I got from the pharmacy clerk at Costco, where I had gone to pick up this prescription on the previous Saturday. As an aside CostCo couldn't sell it to me because when they ran my Group Health card the latter refused the payment stating that I had to go to the Group Health Pharmacy for this purchase (those assholes [Group Health] are really on my shit list, btw). Then the afore mentioned young lady said, "Do you know how much this is going to cost?" I dead panned her with my now stock answer, "It's that or die." There is no real come back for that. Then the young lady told me it would be $651.50 - to which postal, nuclear bombs went off inside me (that is a 30 day, not 90 day supply).
Now I know it wasn't her fault, however the previous day I had spent almost 1 1/2 hours on the phone with three different people from Group Health verifying that the prescription would be correct and waiting when I showed up. Really. How does Joe Paying Customer get a mega buck giga corp to listen to him? It wouldn't be that huge, but I have already been shunted down to their pharmacy rather than a pharmacy of my choice, and once I get home I call my 3rd party to tell them I have the drug in hand and would they please send a reimbursement form, which takes 7 to 10 days to arrive, which I then have to fill out, affixing the original receipt plus the sticky prescription label from the bottle, then mail and wait an additional 4 to 6 weeks for reimbursement. Now, because they only coughed up 30 days I have to do this all again on April 1.
Anyway, bottom line, the drug costs $1303.00 per 30 day supply. Group Health will pay 1/2 leaving $651.50. The 3rd party (which happens to be the drug manufacturer) will then pay $500.00 leaving me with the remaining $151.50 per month for this single medication. That is on top of an addition $66.66 for the rest of my medications for a total of $218.16 per month. It could be worse, but, damn - that is coming close to a car payment, and the Wife really needs a new car.
However, the reimbursement form arrived in yesterday's mail which made it only 7 days and I have filled it out affixing all required labels. So, now that Susan Delfino (of Desperate Housewives) is going to be getting her transplant (oh, poor thing) I wonder if the writers will bother following up on how that only solves this handful of problems, but creates a whole new set to deal with.
.
2.27.2011
A Life Unscripted
Do you ever have a script for your life - something you plan for and expect and at the end of the day, nothing went as it was written?
My life is like that most of the time. I have intricate, detailed plans for my day and how it is going to go, positively, my way. Why don't the actors in my life read the script!?! I ask you!
I have a plan for dialysis, when I switch over to "real" poke-you-with-needles dialysis. I have a tech who is absolutely perfect. He's thorough, he's detailed, he's an excellent needle poker - his patients say he is virtually painless. So, he is who I planned for my attack.
He's quitting in three weeks. March 19, to be exact.
This was not in my script. No way. He was supposed to be The One. All the others are novices, and I've heard the winces and moans from their patients.
My fistula is almost "done" maturing and the nurses are chomping at the bit to get me started. Now, my plan is to hold off for another two or three years - unheard of in temporary access site legends - these sites are only supposed to last three months and mine is going on 18 months. Another 18 won't kill me, maybe.
I would like someone to apply for the replacement poker - skilled in needle control. Tall, dark, and handsome would help. This is, after all, my mini spa and I would like to carry on that image.
.
My life is like that most of the time. I have intricate, detailed plans for my day and how it is going to go, positively, my way. Why don't the actors in my life read the script!?! I ask you!
I have a plan for dialysis, when I switch over to "real" poke-you-with-needles dialysis. I have a tech who is absolutely perfect. He's thorough, he's detailed, he's an excellent needle poker - his patients say he is virtually painless. So, he is who I planned for my attack.
He's quitting in three weeks. March 19, to be exact.
This was not in my script. No way. He was supposed to be The One. All the others are novices, and I've heard the winces and moans from their patients.
My fistula is almost "done" maturing and the nurses are chomping at the bit to get me started. Now, my plan is to hold off for another two or three years - unheard of in temporary access site legends - these sites are only supposed to last three months and mine is going on 18 months. Another 18 won't kill me, maybe.
I would like someone to apply for the replacement poker - skilled in needle control. Tall, dark, and handsome would help. This is, after all, my mini spa and I would like to carry on that image.
.
2.20.2011
Desperate Housewives are Desperate!
Oh, let me count the ways I used to be a fan of Desperate Housewives. That's right - past tense. After tonight's episode, I quit.
I have watched every episode three or four times. I have bonded to Terry Hatcher, as Susan. I have related to her ever since she locked herself out of her house, stark naked. It’s something I would do. I have followed her every antic thinking how I would handle the same situation, and I have found myself thinking, when I’m in a predicament, “What would Susan do?”
And, shazam! They made Susan go on dialysis - just like me! This has got to be good, I thought. BUT - Susan is NOT doing what I do and I would be embarrassed and mortified if I acted as she is.
I am a dialysis patient. I have dialysis three times a week, for three-and-a-half hours every session. Susan has it for six hours every session and let me tell you that no dialysis patient has dialysis for six hours at a time unless they are 400 pounds, diabetic, retaining water like a fish out of water, and have several other diseases tasking their bodies for some kind of normalcy. Also, I do not enter the dialysis room and “choose” where I will sit. I do not whine to police officers that I have dialysis and therefore they should let me go. I do not complain to restaurant hostesses to move up my reservation because I have dialysis. Not to mention the very restrictive diet I am on, which includes the amount of liquid I drink, and the types of foods I eat. No cola. No oranges. No potassium. No sodium. No chocolate. I do not drink a 32 ounce cola just before I go on to dialysis. We get weighed before and after dialysis and our goal weight is deducted from our starting weight and all that extra liquid is taken off during dialysis. Also, dialysis patients don’t all sit around with a beeper for a potential kidney transplant – in fact the majority of dialysis patients have myriad other ailments that disqualify them for a transplant, which on a good day would take three to six years to get.
I am totally disgusted with the way Desperate Housewives is moving with regard to dialysis. They should be ashamed of themselves. They are giving all dialysis patients a bad name. I pride myself in having an up attitude and see that same gumption in all the patients around me. And, also, I am surrounded by people on dialysis that are far, far worse than I am – most of them are diabetics, the most common reason someone needs dialysis. Most are in wheel chairs. Most use oxygen. Most have other diseases. We are not exempt to other ailments just because we are already “serving time.”
I don't go through my life acting like dialysis is this huge albatross around my neck. It's a routine I do - I get up, brush my teeth, get dressed, bring in the paper, go to dialysis, shop at the store on my way home, and I LIVE LIFE! Susan needs to get a grip.
I quit you, DH. Quit!
.
I have watched every episode three or four times. I have bonded to Terry Hatcher, as Susan. I have related to her ever since she locked herself out of her house, stark naked. It’s something I would do. I have followed her every antic thinking how I would handle the same situation, and I have found myself thinking, when I’m in a predicament, “What would Susan do?”
And, shazam! They made Susan go on dialysis - just like me! This has got to be good, I thought. BUT - Susan is NOT doing what I do and I would be embarrassed and mortified if I acted as she is.
I am a dialysis patient. I have dialysis three times a week, for three-and-a-half hours every session. Susan has it for six hours every session and let me tell you that no dialysis patient has dialysis for six hours at a time unless they are 400 pounds, diabetic, retaining water like a fish out of water, and have several other diseases tasking their bodies for some kind of normalcy. Also, I do not enter the dialysis room and “choose” where I will sit. I do not whine to police officers that I have dialysis and therefore they should let me go. I do not complain to restaurant hostesses to move up my reservation because I have dialysis. Not to mention the very restrictive diet I am on, which includes the amount of liquid I drink, and the types of foods I eat. No cola. No oranges. No potassium. No sodium. No chocolate. I do not drink a 32 ounce cola just before I go on to dialysis. We get weighed before and after dialysis and our goal weight is deducted from our starting weight and all that extra liquid is taken off during dialysis. Also, dialysis patients don’t all sit around with a beeper for a potential kidney transplant – in fact the majority of dialysis patients have myriad other ailments that disqualify them for a transplant, which on a good day would take three to six years to get.
I am totally disgusted with the way Desperate Housewives is moving with regard to dialysis. They should be ashamed of themselves. They are giving all dialysis patients a bad name. I pride myself in having an up attitude and see that same gumption in all the patients around me. And, also, I am surrounded by people on dialysis that are far, far worse than I am – most of them are diabetics, the most common reason someone needs dialysis. Most are in wheel chairs. Most use oxygen. Most have other diseases. We are not exempt to other ailments just because we are already “serving time.”
I don't go through my life acting like dialysis is this huge albatross around my neck. It's a routine I do - I get up, brush my teeth, get dressed, bring in the paper, go to dialysis, shop at the store on my way home, and I LIVE LIFE! Susan needs to get a grip.
I quit you, DH. Quit!
.
1.27.2011
How Can You Downsize and Rent Out Your House While Suffering From ADD and Possibly Alzheimer’s
OR
Disorganized Pandemonium
OR
It’s All Trisha’s Fault.
It all started with an article by Trisha on downsizing or organizing your STUFF. Like books.
I started well enough by going through my closet and weeding out all the dresses and business clothes since I don’t work and will probably never work again. And then something caught my eye – my jewelry from when I was a Cookie Lee dealer and so pretty soon, I was on the bed, sorting through all the jewelry I haven’t sold and won’t wear and maybe I’ll try to sell – oh! And there, I found a bracelet that I probably WILL wear and so I looked for something to – oh! An organizing tool box with little cubbyholes, just right for jewelry and so – oh! There are the dress suits I bought when I was a size 8, never to be that thin again unless I stop eating for a month. What to do. What to do. And then as I’m walking through the kitchen with the suits to put in bags for the Women’s Transition Center, I see a couple dirty dishes and I stop and fill the sink, wash the dishes that I have slowly accrued since I am only at the house once a week. And then I walk back in the bedroom – oh! The tool box is sitting there open and empty and I start sorting through the jewelry again and pull out just enough pieces for me to personally wear sometime in the next 20-30 years. And then I see the book case, and start sorting out the books I want to keep with the books I want to give to Goodwill. And then I spy the huge flower vase full of coins and next to it the empty coin rolls to fill and I start sorting the quarters, nickels, dimes, and pennies and . . .
Four hours later I have a huge pile of books, dresses, jewelry, rolled up coins and – oh! All those bottles in the utility room. What to do! What to do! What to do!
.
Disorganized Pandemonium
OR
It’s All Trisha’s Fault.
It all started with an article by Trisha on downsizing or organizing your STUFF. Like books.
I started well enough by going through my closet and weeding out all the dresses and business clothes since I don’t work and will probably never work again. And then something caught my eye – my jewelry from when I was a Cookie Lee dealer and so pretty soon, I was on the bed, sorting through all the jewelry I haven’t sold and won’t wear and maybe I’ll try to sell – oh! And there, I found a bracelet that I probably WILL wear and so I looked for something to – oh! An organizing tool box with little cubbyholes, just right for jewelry and so – oh! There are the dress suits I bought when I was a size 8, never to be that thin again unless I stop eating for a month. What to do. What to do. And then as I’m walking through the kitchen with the suits to put in bags for the Women’s Transition Center, I see a couple dirty dishes and I stop and fill the sink, wash the dishes that I have slowly accrued since I am only at the house once a week. And then I walk back in the bedroom – oh! The tool box is sitting there open and empty and I start sorting through the jewelry again and pull out just enough pieces for me to personally wear sometime in the next 20-30 years. And then I see the book case, and start sorting out the books I want to keep with the books I want to give to Goodwill. And then I spy the huge flower vase full of coins and next to it the empty coin rolls to fill and I start sorting the quarters, nickels, dimes, and pennies and . . .
Four hours later I have a huge pile of books, dresses, jewelry, rolled up coins and – oh! All those bottles in the utility room. What to do! What to do! What to do!
.
1.13.2011
Sarah Plain and Small
When Gabrielle Giffords was gravely wounded along with several others by a young unhinged man, and six innocent bystanders killed, something absolute and unconditional happened: a nation split by politics, debates, innuendos, pointing fingers, blaming others, and selfish prattling, was moved to unite and to reprioritize what is important.
And in a far corner in Alaska, Sarah Palin could only take the low road and interpreted the whole episode in Arizona and references to her “cross hairs map” personally.
Sarah, here’s my message to you: Shut up and sit down. It is not about you.
To repeat the words of President Barak Obama:
We can be better.
.
And in a far corner in Alaska, Sarah Palin could only take the low road and interpreted the whole episode in Arizona and references to her “cross hairs map” personally.
Sarah, here’s my message to you: Shut up and sit down. It is not about you.
To repeat the words of President Barak Obama:
We can be better.
.
1.05.2011
Mommy Magic
Remember how you used to watch your child leave for First Grade all by himself? You know the time. It was after the 23rd time that you walked him to school and finally released him like a little bird from the nest. You watched him walk down the sidewalk, growing smaller and smaller and smaller, until he was a tiny (tinier than he actually was) little speck in the distance. That watching was your Mommy Magic. It embraced your child and protected him from all kinds of danger, from cars, from strangers, from dogs, from mud slinging from the road, from any manner of harm. You didn’t close the front door until you gave that little speck an extra hard mesmerizing stare that would cover him for the day and bring him home.
I did it. Often. It was a ritual of mine that I just HAD to do. Later, when my oldest joined the Army, I realized I had the power to lift planes with my Mommy Magic. I would stare at that plane until it was a tiny little speck far, far off the horizon and I would not leave my post until I had used up all of my super vision.
I have the same power with words. Like saying, “Drive careful.” Every time my “boys” leave my house, I must say the magic words, “Drive careful.” And I, my power, will make it so. Or, when they were little and we were visiting anyone. My one word would ring out, “Behave.” And like magic, they sat still and didn’t play in dirt and didn’t sock each other in the eye.
Um, the last is actually a poor example. When they visit me and start acting like apes doing a comedy routine and I say, "Behave!", they just laugh at me.
I have discovered I still have the mind power going after 38 years. I blessed my son, moving to Arizona, with my sage advice: “Drive careful.” (Plus, pack your car with two blankets, sleeping bag, water, food to last four days in case you get stuck in the snow and can’t get out.) I watched him walk to his car, my vision boring into the back of his head, memorizing his body, and didn’t close the door until he was a little speck on the road, far, far away.
After two days and the obligatory “Drive careful”, he made it to his new apartment safe, sound, and in one piece.
So, my job is never done. :)
.
I did it. Often. It was a ritual of mine that I just HAD to do. Later, when my oldest joined the Army, I realized I had the power to lift planes with my Mommy Magic. I would stare at that plane until it was a tiny little speck far, far off the horizon and I would not leave my post until I had used up all of my super vision.
I have the same power with words. Like saying, “Drive careful.” Every time my “boys” leave my house, I must say the magic words, “Drive careful.” And I, my power, will make it so. Or, when they were little and we were visiting anyone. My one word would ring out, “Behave.” And like magic, they sat still and didn’t play in dirt and didn’t sock each other in the eye.
Um, the last is actually a poor example. When they visit me and start acting like apes doing a comedy routine and I say, "Behave!", they just laugh at me.
I have discovered I still have the mind power going after 38 years. I blessed my son, moving to Arizona, with my sage advice: “Drive careful.” (Plus, pack your car with two blankets, sleeping bag, water, food to last four days in case you get stuck in the snow and can’t get out.) I watched him walk to his car, my vision boring into the back of his head, memorizing his body, and didn’t close the door until he was a little speck on the road, far, far away.
After two days and the obligatory “Drive careful”, he made it to his new apartment safe, sound, and in one piece.
So, my job is never done. :)
.
12.02.2010
Mechanic's Helper, Second Half
Mechanic Man begged for my help, I was so good last time. (You have to read this first.) Not really as a mechanic's helper but as a demolition expert. Just call me Ms. Demo. We are taking apart walls at the Ziggy's that is closing on Market. For our labor, we get to keep the wood and particle boards.
I haven't lifted a hammer in my entire life. So, I have been pounding out nails and wrenching out nails since 10:00 this morning. Finished at 5:00.
Hit my head three times with the crow bar, trying to wrench nails loose. So, I guess I can't make fun of Mechanic Man whacking himself with a sledge hammer. Smacked my lip once. After four or five hours of this fun, Mechanic Man looked at me and said, what happened to you??? Blood on my lip, goose-egg on my forehead, bruise on my cheek. I looked like someone beat me up.
The plus side of this - instead of calling me his pet name of Chunkie Butt (we won't go there), he is calling me Cupcake.
That makes me feel like the hammer isn't so heavy after all.
We start again in the morning. I figure it's about five parts hard labor for one part wood product.
So, I guess I am fairly easy to be your slave - if you call me Cupcake. By the way, I may not be writing tomorrow since I can barely move my fingers and could hardly open my bottle of Tylenol. I may not even be able to lift a hammer tomorrow so Mechanic Man better store up a lot of Cupcake calling.
.
I haven't lifted a hammer in my entire life. So, I have been pounding out nails and wrenching out nails since 10:00 this morning. Finished at 5:00.
Hit my head three times with the crow bar, trying to wrench nails loose. So, I guess I can't make fun of Mechanic Man whacking himself with a sledge hammer. Smacked my lip once. After four or five hours of this fun, Mechanic Man looked at me and said, what happened to you??? Blood on my lip, goose-egg on my forehead, bruise on my cheek. I looked like someone beat me up.
The plus side of this - instead of calling me his pet name of Chunkie Butt (we won't go there), he is calling me Cupcake.
That makes me feel like the hammer isn't so heavy after all.
We start again in the morning. I figure it's about five parts hard labor for one part wood product.
So, I guess I am fairly easy to be your slave - if you call me Cupcake. By the way, I may not be writing tomorrow since I can barely move my fingers and could hardly open my bottle of Tylenol. I may not even be able to lift a hammer tomorrow so Mechanic Man better store up a lot of Cupcake calling.
.
11.30.2010
Just Wondering. . .
I wonder about all the guilt you feel if you fail your vehicle emissions test. Would studying have helped? And why are you so relieved when you pass, like you partied all night instead of studying and skated by THIS one.
11.27.2010
Picture Perfect
It's just after 4:00 on Saturday evening, after nearly a full day of snow, coming down, coming down, coming down. I was just looking out the window at the trees across the way, distinctly outlined in inches of snow, the nearing dusk seeming to make them glow, and along crept the Canadian Pacific Railroad red engine, like a moving postcard, snow on its roof, slowly floating across my view. It was perfectly quiet, silent - buffeted by the five inches of snow we just received.
Ah, Snow. . . .
It's coming down now. Reminds me of two years ago when it was the Snow from Hell. I cared then. Then I had a job and needed roads to travel, sidewalks to walk. Now - it's snowing and I don't care. But remember how we had all the adventures of Mechanic Man hopping up on the roof like he thought he was Santa?
That's still a happening thing. Hopping up there like he is a feather-weight. If you have met him, the Santa image is not too far off. You've got the white hair. You've got the jolly belly. Well, in the case of Mechanic Man - jolly is not in his vocabulary when it comes to hopping on the roof. Whaling away at ice blocks. Ho Ho Ho.
I'll keep you posted. He's getting ready.
Hop!
That's still a happening thing. Hopping up there like he is a feather-weight. If you have met him, the Santa image is not too far off. You've got the white hair. You've got the jolly belly. Well, in the case of Mechanic Man - jolly is not in his vocabulary when it comes to hopping on the roof. Whaling away at ice blocks. Ho Ho Ho.
I'll keep you posted. He's getting ready.
Hop!
Subscribe to:
Posts (Atom)