The "It's A Quiet Monday", edition.

iPad shuffled to "Sweet Thing", Rufus Featuring Chaka Khan.  Still trying figure where Rufus went....  I was thinking about what was going on a year ago.  I was getting ready for the 2nd surgery on the fistula.  I'd had the surgery a week before.  However the original fistula clotted immediately. ;-(  I also recall the surgeon's nurse wanted me to have the staff here check the site. My tech informed me it wasn't her job. The doctor's office called me and asked how the fistula was doing and was the bandaged changed. I told her that the staff here said it wasn't their job.  I guess doc's office called. My bandaged got changed.  Sadly the fistula had to get fixed. 2 surgeries in 2 weeks. Brian and I had made plans to go out for dinner to celebrate our anniversary and my birthday.  Instead I was back at Sinai-Grace.  By this time I was real tired of the hospital. ;-(.  You know, at that time, my world was doctors and dialysis. Still using the walker.  Well, that was then.  Now I'm going to mentor dialysis patients. :-)

Aretha Franklin, "Ain't No Way". Love this song.  It highlights just how powerful her voice is.   The people who attended the class were selected by social workers at their clinics. Four of us have been on dialysis less than 18 months, one for 10 years, and one was a transplant recipient.  Our professions included teacher, nurse, chef, social worker, communications profession and technology. I thought the group was intelligent and knowledgable.  

I enjoyed being with other dialysis patients. Exchanging stories, experiences, suggestions and tips.  Learning from each other.  This doesn't occur in the clinics. People come in, turn on their TV and go to sleep. It was nice to talk with people with a shared experience and how they handle issues.  Someone brought up having support groups at the clinics.  I think that happens when you're in tthe reception area waiting for your chair.  Except first shift where we walk right on in. :-)  "When You Think of Me", Eric Benet.  "It's never to hard to make friends when you're making Benjamins".  

So I went dialysis on Saturday instead of Friday. I pretty much know or recognize most of the people on MWF on my shift and a lot on second shift. On Saturday was a bunch of people I'd never seen before. Lol. I even had a tech I'd never had. However in the module next to us was a very familiar tech.  Which was good.  She had to stick my tricky venous acces. :)

Well that's it for today. Signing off with Aretha, "I Never Loved a Man (The Way I Love You)".  Let the kids shovel the snow!!

The "Brian and I Are Officially Peer Mentors and We Have the Badges toProve It!", edition.

iPod shuffled to "Joy", Isaac Hayes. That's a pleasant surprise.  :-).  Lots of snow this morning.  And it's gonna keep on coming. And of course we have an event we must attend. Immediately after dialysis. Across town. And there is already a lot of snow. With much more to come. Yay life.!!!  Lol. Yes I'm dialyzing on Saturday morning...at 9:00 AM. But that's because we had the Peer Mentoring training yesterday.  All day. 9 to 5.  The training program was done by the National Kidney Foundation of Michigan for Greenfield Health Systems.

We?  Had training?  Yes. I learned how to mentor my peers and Brian learned how to mentor his peers. You know my peers are dialysis patients. But who are Brian's peers?  His peers are caregivers. :-)   There were 2 caregivers at training. My "helicopter" husband and a "helicopter" wife.  We represented centers within the Greenfield a Health Systems dialysis centers, with each of us initially serving our own centers. We learned empathetic listening, which appeared to be a difficult skill to learn.  Lol. Listening and hearing seemed to be a challenge. I'm not saying this in a bad way, but most people don't do active listening.  They want to respond midway through.  Remember when we learned, "seek first to understand, then to be understood"?  When asked, "How do you feel?", people would launch into an experience. It seemed it was difficult for people to express there own feelings. Just, "I feel; happy, sad, angry, upset, frustrated, etc   You try it. Reflective listening was also a challenge.  "I hear you saying....".  Or " I understand that  you are feeling...."  So we did a lot of role playing with feedback.  "Keep On Loving Me", The Whispers. Lol. I guess The Dramatics are taking a vacation. The Whispers stepped up.  I think we'll be fine mentors. And we'll get better with time. Oh yeah, they gave us fancy badges on lanyards. 

So Saturday at the clinic. I'm a visitor.  First I need to thank the staff for accommodating me. I made my request on Wednesday to come in on Saturday. I know from experience that they may not be able to make the assignment to as late as the day requested. I called yesterday.  The charge nurse said she was working on it as we spoke. The early chair was dependent on if a patient was still in the hospital.  The nurse called back and let me know a 6AM (first shift) was not available. The good news is the patient was discharged. I'm not wishing a hospital on anyone. Anyway, I did get a 9AM slot. Good enough.  I walked in and staff are , "why are you here today". The concern was I needed an extra day because I had excess fluid. People have been known to have so much fluid they need to come in on extra days. They've retained 7-10+ kilos.  Heck, I don't even know how you do that. Drink nonstop?  But no, I just missed my day because of training. :-)

So Brian and I will be practicing mentoring skills with each other, because one or both of will called to mentor. :-)  Signing off with Tears for Fears, "Everybody Wants to Rule the World". Make some good comfort food.  Stay warm.  Enjoy a good ol' snowy Michigan weekend. :-D. 

The, "The Kid's Birthday is Tomorrow", edition.

iPod shuffled to Sergio Mendes and Brasil 66, "The Look of Love". I liked them when I was a kid. I still like them. When my kid was into Latin music, she discovered them and I rediscovered them. :). We even listened to and watched videos of the Mexican bands that had tubas. The name of the style isn't coming to me at the moment. And....tomorrow my kid's birthday.

I think she's great, but I know I'm looking through the eyes of a mommy. She tells me, "You're such a mom".  Guilty. I compare her to me at that age. She is the anti-Pat. And that's a good thing.  Lol. Those of you who knew me at the ages of 20-28 know what I'm talking about.  Lol. I wonder where the time went.  I had an infant in my arms a few days ago.  Now she's living in another state!  Good thing she's far enough away that I'm not trying to get to see her every weekend. But we do have more communications options then we did when I was away. We call, of course, but we have our phones with us 24/7. We text, we message on Facebook and we Skype.  Lol. She pushed us into Skyping and then laughs at us when we get confused. Rofl. Hey we used to be the young ones who were the technology experts. Lol lol.  Oh yeah, it's not real convenient to get from Detroit to Champaign.  No matter the mode, you have a layover in Chicago. Unless you drive. And that drive is old and tedious after several trips now. Lol 

She was destined to do technology. When she was a baby, Brian and I would hold her in our laps when we were on the computer. I have a photo somewhere of her at about 6 months sitting on Brian's  lap at the computer and both of them staring intently at the screen. We got her age appropriate software. Carmen Sandiego, anyone?  When my aunt babysat her, she showed the aunt how to use the VCR.  Yeah she knew how to use it. One day we found a big fat crayon in our VCR. Lol. We couldn't understand why the tape wasn't going in. :-/   Lol.  She also stuck a credit card into the disk drive on the computer. The Whispers, "I Only Meant To Wet My Feet".   "...but you pulled me in.  The waters of love run deep." Just go with it. I look for Brian for dance on Whispers songs. <3. 

Well now she's teaching us and introducing things to us. We are so proud of her. I used pray that I was able to raise her to be an independent and productive adult.  So far so good. Now I want her to be happy and content in her life. Again, so far, good. Oh yeah, this is how you know you're kid has morphed into adulthood. She asked for luggage for her birthday.  Lol. 

My Wendell is going home today, after 3 months in the hospital. Yay!!!  Friday, I'm going to the Peer Mentoring workshop.  It's all day, I'll be dialyzing on Saturday..no blog on Friday. 

Signing off with Beyoncé, "Deja Vu". Huh..the iPad put that doo hickey on Beyoncé's name. Lol. Enjoy you're Wednesday. Stay warm!!

The "The More information I Get, The Scarier ESRD Becomes", edition.

iPod shuffled to "American Boy", Estelle featuring Kanye West. " Don't like his baggy jeans..."  Yep. Lol.   I floated into the negatives this weekend. It really can't be helped. I submit that all dialysis patients struggle with this. A constant fight with depression and hopelessness. Um. I forgot to recharge the iPod, so I had to change to the iPad. Opening song, "Hot in Herre", Nelly.  This is a party starter, even for my generation. Lol. How do I know this?  It happened at a party I went to. I'm sure our kids would have been mortified. Too bad. Lol. 

So after that I jump back to the depression fight. This weekend I was thinking about spontenaiety is out.  I have to plan for everything. I made the arrangements for Christmas travel in October. I had to turn in my travel paperwork to my social worker 4-6 weeks in advance. A dialysis center has to be found. Insurance has to be approved. Even then, when I get to my destination, I have 5 hours on 3 days where I am out of commission....if I'm lucky.  I may still get the "dialysis wipe out".   When I travel, I have to take my dialysis bag with me. A blanket is mandatory.  

I know.  You say, "Pat.  It sounds like you're doing fine."  Well, what choice do I have?  This is my reality. I will NEVER recover from kidney failure. The best I can hope for is a transplant...and realistically, that will be years.  

I also read about having a disaster plan for dialysis patients. A catostrophic disaster could mean my death. If I can't get dialysis after  number of days, my body will just break down. Toxins will take over.  And if I'm thirsty now, I'd have to really cut back, because I won't be able to get rid of the fluids. I've already experienced that. Pulmonary edema. Drowning by my own body.  Ugh. As frightening as this is, I need to know about it and be prepared. This is what I need to know to stay alive.  So yeah, I do as much as I can. I'm trying to live my life to the fullest.  I can die at any time. I cannot get better. 

Bleah. I like my iPod better for music. I can skip songs faster. Lol. Then I wonder about why I downloaded some songs if I skip over them all the time?  Moving to positives. Shawn is in Champaign, Illinois, 2 hours from Indianapolis. They got no snow. None. The town about 20 miles east got snow.  Go figure. Cameo, "I Just Want to Be". Saw them back in the early 80's with Roger and Zapp. The concert was a party.  One of the best concerts ever!!  Outdoor concert. Kinda smokey. ;-)  

And I went to visit my Wendell yesterday. I texted him I was coming and asked if wanted anything.  He asked for fried chicken. Woot. That's a definite sign he's getting better!!!  Lol. It was torture riding in the car with that fried chicken. We got there.  He had on his shoes, hanging out the bed. He's been walking and he just looked better and was animated!!!  He's ready to home.  I'm glad he started eating again. And like me, his appetite has come back with a vengeance. Maybe he'll be home before Christmas.  It's kinda nice being able to talk and commiserate with someone close who is sharing the same medical issues.  He showed me and explained peritoneal dialysis. He's now asking me about hemodialysis and fistulas. 

For the record, Brian and Shawn don't allow me to wallow in self pity. And I can't afford to anyway. Signing off with "Killer Joe", Quincy Jones and his Orchestra". Also like the Manhattan Transfer version.  :-)  Have a great day.  Oh, to my friends and family in California and Texas who got snow and ice this weekend...."oh boo hoo". Lol lol. 

Oh yeah..the wifi at the center was wonky this morning, so the entry is late today.  

The "Brian's Been in the Paper 3 Days This Week (lol)", edition.

iPod shuffled NWA, "Straight Outta Compton". Ren was as good as Dre, Ice Cube, and Eazy E. Guess he went in another direction after they broke up. Yes, I looked him up. So yeah, Brian's photo was in the paper Sunday, Wednesday and Thursday. I call him the official "face" of the retirees.  Lol. How did we end up in the paper?  A few weeks ago, we went to a meeting for the retirees in Sterling Heights. The organization had 2 meetings that week. One on the west side, one on the east side. I couldn't make the west side one because of dialysis.

We stopped to get coffee then went to the venue.  We thought we were getting there early (1/2 hour). Lol. When you have retirees, you have people with time on their hands. It.was.crowded.  Brian dropped me off. I'm inside following the crowd. A lady stops me and introduces herself as Susan Tompor of the Free Press. She asks if she could interview me after the meeting, I said sure. I hadn't seen the point of view of the retirees regarding the bankruptcy in the media. I could at least let her know our confusion and how we were finding out more from the media than we were from the City. I gave her my cell number and headed to the room. I got in line to register, paid my dues...I'd already gave $$ to the legal fund. Saw an old friend.  "With Open Arms", Rachelle Ferrell". Her range rivals Mariah Carey. Her voice and the arrangement...pure perfection. 

The friend tells me they expected around 500 people the previous day. 1500 retirees showed up. And they were on target for 1500 more for the 2nd meeting. Yeah, so many people...standing room only.   The officers passed on info, but things were changing so rapidly that what was true the previous week, was no longer relevant. It got to the point that the answer to most questions was, "we won't know until the judge's ruling". But here's the thing. We were being rushed to make decisions that affected our health care and finances, but City was giving us incomplete information or none at all.  We left the meeting none the wiser. Let me make it clear that it was not the fault of the retiree association. The meeting was planned when some information came out. Within a week that information was null and void. Everything had changed. 

So anyway, the reporter called a few days later.  She and a photographer came over and interviewed me and Brian for about an hour. A whole lot was left out of the article, but I think she got the gist of what we think about the situation and the possible impacts. The article was published Sunday. She called me Tuesday after the ruling to get my opinion so I was quoted on Wednesday and Brian's photo was on the front page. Rofl. Finally Brian was part of a montage of photos on Thursday. Lol. Oh yeah, Brian got a call from Guy Gordon of WDIV for an interview request. He declined. I laughed. 

I'm off the rage cliff. I guess I needed to vent. And my blood pressure is down. Wednesday is the day the nephrologist visits us at the center. He checked my machine and saw the my blood pressure was elevated all morning. How high?  I was averaging around 185/110!  That was way off and out of the norm since I'd been trending ridiculously low. Anyway doc changes my blood pressure meds. I took them yesterday and now I'm back to normal. Kidney failure is doing a number on me.  "Another Star", Stevie Wonder.  He is so talented. 

I got my Medicare card and some info. The mailing instructed me to go and apply for Medicare Part D, drug coverage. I went to the web site. I was confused. The Medicare site gave me 31 Part D plans and about 30 Medicare Advantage Plans and the associated premiums. WTH?  Lol. I called Blue Cross instead. Lol. I'm good for now because the City is covering us until at least February 28, 2014. I'll revisit this in late January / early February.  Just for clarification. ESRD, End Stage Renal Disease, is considered a disability because not to many of us can afford to pay for dialysis out of picket. Also, apparently my meds come in at $17K a year! The cost of one of the meds I take is exorbitant. 

I need to shop for my 2 kids this weekend for the Adopt a Child event. I'm looking forward to shopping and the event!  Have a great weekend. Signing off with, "Just Gets Better With Time", The Whispers. Slow dance time!!!

The "The City is Bankrupt and I'm Supposed to Share the Pain", edition.

Bullshit.  I'm not in a "Support Detroit" frame of mind.  iPod shuffled to "Standing On The Top", The Temptations featuring Rick James. Clearly the retirees are not standing on the top.  It seems as if we're underneath the boot getting the life squished out of us. Apparently retirees on fixed incomes can weather an income cut just as much as a bank or a business can lose a profit for the shareholders. Heh, my blood pressure is up this morning.  Seriously. Here's the deal. When I'm hooked up to the machine, part of that hook up is a blood pressure cuff on my right arm ( the needles are in the left arm), taking my blood pressure every 15 minutes. I've been here 30 minutes.  My blood pressure is elevated. I am so pissed. I have to talk myself off the rage cliff.

"Oh My God", Mark Ronson featuring Lily Allen. Great horns. We'll see where this goes. I don't believe the cuts will be outrageous, but they will happen.  We're looking at 8-25%. That's not real cool if your check is $700 / month.  So here we go. Pensions start getting taxed by the state a few years ago.  Now retirees have to pay for their health coverage. Depending on the income and coverage, the premiums can go up to $1000/month. And let's face it, old people get sick. Do I gamble on my health and opt for the policy with the lower premium, but higher deductible and out of pocket costs.  Or do I hedge my bets with a more comprehensive plan. Someone getting $700 month Is already SOL.  Oh yeah and on top of that, the pension is getting cut. The monthly pay is down to $575 if the cut is 25%. Doesn't sound like shared pain. It sounds like disposable people. RAGE. 

Ok. I'm coming down off the rage cliff. "Funkin' For Jamaica", Tom Browne. "Betty Boop, Boop Boop be doop". Opening horn.  I can name that song in one note.  Lol. Head bop. :)  So when my blood pressure is high, I'm not allowed to recline <huge frown>. I have to sit up.  Let's hope the pressure goes down. I'm not trying to sit up for 3.5 hours.  

Well, that's it for today. I need to focus on something else. I don't need to have a stroke worrying about this.  It would be just what Orr and Snyder would like. One less retiree to worry about. >:-(

Signing off with "When You Get Right Down to It", Phyllis Hyman. "When you get right down to it, you're not in love anymore". Damn skippy. Am real indifferent to Detroit. Detroit doesn't give a hoot about its retirees. I can reciprocate the feeling.  Lol.  OMG. I need to stop and log off. 

Have a great day. I'm going to give it my best shot!

The "It's Always Something, But It's OK (It Has To Be), edition.

iPod shuffled to "What Becomes Of The Brokenhearted", Jimmy Ruffin.  That's a classic, isn't it?  Good sing along song, too. You know, the song you sing at the top of your lungs when you're alone in the car. ;-)   Well that was a nice long weekend. My kid arrived in town on November 21 (our wedding anniversary...how was that fior a gift!!). She left to go back to Champaign on Saturday, November 30. It sounds like that was a long visit.  But time flew. I'd tell you she stayed about 2 hours before she to leave.  Lol. Ah well, she got her birthday presents early.

I think I'm dealing with kidney failure pretty well, but it's just always there. I feel like I'm being denied water.  So of course that's all I want. No coffee, no soda, no juice, just a big honking glass of ice cold ice water. Unlimited quantities. I get over it. I know.  I've whined about this before. Jill Scott, "A Long Walk".  Loved her the first time I heard her.  I'm also having a mild issue with my fistula button holes. The bottom access, the arterial, is fine, beautiful, just great. The top access, the venous, is my problem child. :-(  It runs for while, then the pressure goes up.  By the time I'm finished, the buttonhole is leaking.  The nurse says it sounds like I'm clotting at the needle. She increased the heparin (blood thinner) for the last hour of the run. Hope it works (crosses fingers).   You remember heparin.  I got injected with it several times a day when I was in the hospital in ICU. The injection I got in my stomach. To prevent clots since I was confined to the bed.  And no, it didn't hurt. 

I'm thinking my pain tolerance is pretty high. I winced while I waited for the injection in my stomach. Lol. It was nothing.  I get stuck with 2 needles 3 times a week. No big deal. In addition to the needles, the scabs on my buttonhole have to be removed.  Each tech who has removed the scabs is concerned that it hurts...but it doesn't. Mary J Blige, "Take Me As I Am". It took me years to warm up to Mary. The young women at my hip hop hair salon loved her. To get the flavor of the salon, they loved to watch "Menace to Society".  Lol. My hairdresser had most of us ("mature" customers) come in on Sunday. Lol.  If I say more, I'll sound really judgey and they were really nice young ladies. Interesting to see the, as 40+ women now. 

Last night I had breathing issues.  Not emergency room worthy, but every now and then I had to take deep breaths. Yep, directly related to fluid retention. I'm confused. I pee a lot, so how am I still retaining enough fluid to affect my breathing?  It could be that I had 1 dialysis session between Tuesday  and today.  Dialysis on Tuesday, Friday, and now today. Lol.  And it was during a holiday.  Oh, I tried a piece of ham. I hadn't had any in over a year. OMG.  It was delicious. Honey Baked ham.  And it was quite salty.  Lol. No more for me. Probably why I was thirsty on Friday.  No more ham for me. Well, maybe 1 slice next year.  We'll call it a yearly treat. :).  Dionne Warwick, "Walk On By", 1964. 50 years ago. I also like the Isaac Hayes version. I need to download that. Lol. Looking on Wikipedia, there are 12 versions of the song!!

Well, today, I have to investigate Medicare gap coverage.  Medicare covers all expenses related kidney failure, but only 80% of other medical expenses.  Signing off with Kashif, "Help Yourself to My Love", 1983.   I love the vocals and arrangement.  Have a great day. Drink a glass of ice water for me!!!