The "I'm Wearing a Rainbow Wig at a Treatment Today", edition.

iPod shuffled to The Main Ingredient, "Rolling Down A Mountainside".  This song highlights Cuba Gooding's voice and the harmonies of the group.  Plus you get the benefit of 70's guitar effects - lol.  Well since I won't be at dialysis tomorrow, I'm doing my Halloween thing today. I've like the dress up part of Halloween.  When I worked we wore costumes, decorated our offices and cubicles and passed out candy.  So anyway I'm the only one here in "costume".  I had some candy (renal safe, of course) to pass out, but I left it at home. I'll bring it Friday.  It can be my 1 year anniversary of finding out my kidneys failed.  Hmmmm.  To make it sound more positive, it can be my year anniversary of the day my life was saved.  How's that?  :)

Starting next week I'll recap the events which led up to me being here. But right now I need to mention some friends. Geez, I still haven't changed the time on the iPod. I thought it would reset its self, but maybe I did it and need to reset it manually.  Someone go find my memory. I forgot where I left it. :-/  lol. I have a friend who has overcome a stroke and is living successfully with diabetes. I have a friend who has overcome pancreatic cancer. They are fabulous survivors. My aunt whose kidneys failed around the same as mine, is doing better.   I need to get to Ohio to visit her. Dr. Dre, "Let Me Ride", explicit version. Heh, if you don't get the explicit version, you lose a lot of the meaning of the song. On the other hand, my kid judges me sometimes.  Lol.  

One more survivor is my Wendell.  My partner in kidney failure. Well, he's got a pretty bad infection. Remember I told you that dialysis patients are highly susceptible to infections.  He's been hospitalized for almost a month. :-(   The infections are life threatening ass kickers. In a matter of days he was unable to walk.  He's also experienced a loss of appetite.  And he still has to be dialyzed.  I'm visiting him often and am there for him. He'll get better, but it'll take time. 

I get to dialysis today and the holiday schedules are out.  The days have to equitable and staff deserve days off. So the week of Thanksgiving, instead of Monday, Wednesday, and Friday, I'll go Sunday, Tuesday and Friday.  Lol. I kinda like going the day after the holiday. Dialyze that dinner away!!!  I have a few of Diana Ross songs and I don't  know how or why. She not one of my favorites. I skip her songs. Anyway the Christmas schedule starts Sunday, December 22, 2013 and ends January 4, 2014.  They did this last year, but I was still adjusting to the world of dialysis. I guess I just marvel at what a difference a year makes.  I was using a walker, crashing after treatment, doing my Black Friday shopping online - all my Christmas shopping online.  Trying desperately to make some kind of Thanksgining dinner for my family, that was renal safe.  Today I walk into the center with a rainbow wig - lol. However, that is tempered with a notice of the passing of a fellow patient. The reality of failed kidneys.  Well, I made people smile today and I think that's important. :-)

Happy Halloween.  Watch your candy intake.  Lol. They've given us list of candy that is better for us, but also if you just have to indulge, we have documentation of the amount of potassium or phosporus is involved.  Always cognizant. Heh, the food compliance and associated labs are important for STAYING on the transplant list. Lol if you cheat you get caught. Blood drawn for labs every 2 weeks.  Ah. I was signing off, and I shall.  Signing off with "I Can't Help It", Michael Jackson. So pretty. "I wouldn't help even if I could".  :-)

Photo of me in the wig. I tried to smile.  I look the kid afraid of Santa Claus ( you know who you are ). Lol. Even my take told me to smile. It took 8 tries to get this one. Lol

The "It's Time For the Hat", edition.

iPod shuffled to "The Show", Doug E Fresh with Slick Rick.  Sampled Inspector Gadget. Lol.  This song is really genius.  Scratching, Doug's human beat box. Good old school rap/hip hop.  It was a party starter.  So much to tell, not enough one finger typing stamina. Lol. I'll start with a teaser.

Yesterday I went to meeting to plan my class of '74 high school reunion.  It was great seeing people I went to high school with. We all looked good.  I mean really good. :)   This should be fun.  The class size was 104 or so. 49 have Facebook accounts, and maybe 10-15 more have been notified. A few have passed away. Now we have to find the rest. One more note.  Looking through the yearbooks and remembering us being so young.   So yeah, this will be a topic for another day.   "Just My Imagination", The Temptations.  I'll add this song to our page as a high school memory.  :)

Back to Las Vegas.  I mentioned during conversation, during the time was in the nursing home with Dad about what he was eating.  His diet consisted of kielbasa, bag of salad and a baked potato.  Lol. I talk to him every and ask what's he eating.  After 4-5 days of hearing this same thing I asked about some variety.  He says he went to the grocery store and 10 pounds of kielbasa was on sale. :-(   See, my dad never ever went grocery shopping and he barely cooked.  Mom spoiled him. :-)    Klymaxx, "Meeting in the Ladies Room",  "There's a hunk of a man I left behind".  Talented group of ladies.   Also, my dad was/is cheap so the idea of 10 pounds of kielbasa sounded like a good deal. 

Long story short, in July 2012, Shawn and I went to Vegas to show Dad how to shop for groceries...introduce him to the prepared foods and frozen foods sections.  We also cooked a bunch of meals and froze them for him.  After that ran out, I started ordering him heat and serve meals from Omaha Steaks. That actually worked out well and it was not expensive.  We'd also introduce him to a few restaurants (not fast food), where he could get meals, like his favorite fish and chips.  He'd also get a pizza every now and then. Lol. 

When Brian and I went out there in February 2013, we cooked for him. Brian bought a Dad a rice cooker and showed him how to use it. Dad is now a rice-master. Lol.  So now to this past visit of October 2013.  We arrived Tuesday afternoon.  We made a menu and shopping list and went shopping Wednesday morning.  What did we cook for him this time?  Cube steak with gravy, 2 pot roasts, red beans (he can make his own rice-lol), chili, chicken with noodles, beef stroganoff, spaghetti, mashed potatoes, fresh green beans, a breakfast with smoothered potatoes, sausage, bacon and biscuits.  Oh yeah, and some enchiladas.  Now when he tells me what he's having for dinner, I want to join him. :-)  We also found a soul food restaurant for when he wants barbeque chicken and catfish.  

"Do I Do", Stevie Wonder.  This one of my favorite Stevie songs. It's a happy song. :-)  lol I started head bopping and chair dancing.  I digress.  No, we did more than cooking while we there.  Of course I went to dialysis three times.  Well that doesn't sound exciting.  Lol. We had lunch with Mrs Loria, Shawn's Pre-Kindergarten teacher, and her husband (lol. I still have a difficult time calling her by her first name. I'll get over it), we visit North Las Vegas to show Brian a city that basically closed down.  We explored the Town Square mall. It looks like a little city with side streets, instead of a big enclosed mall.  Ah, it says it was designed as a European village.  Lol. Looks like it. 

We did our daily morning run to Boulder Station Casino.  We play for about an hour.  I had enough points to treat us to Sunday Brunch!!!  I think that's because I gave Gary my card while played poker.  Lol. That's a story for another day. ;-)    I'll explain Boulder Station another day and our casino visiting habits.  We visited downtown and went to "The D", a Detroit themed casino.   The have an American Coney Island restaurant inside. It was crowded!!!

Well that's a lot and enough for today. Signing off with Detroit's own, The Floaters, "Float On".  My name is Charles....".  Hey, they're ours and no one else can talk about them. Lol. I will always depend that crazy a@@ song.  Roflmao. ;-D

The "I Switched To a Warmer Coat Today", edition.

iPod shuffled to Aretha Franklin, "Day Dreaming". I like the guitar in the arrangement.  I hate moving to a warmer coat. It means it's getting closer to snow and ice. /cry.  Just makes me closer to that move to Las Vegas.  The weather we have now is pretty much as cold as it gets there.  We'll be calling the Salvation Army to get the stuff we can't sell or give away. I can't believe that we've cleaned out most of the clothes. Did I tell you I found letters mom and dad wrote each other before they got married?  And my mom's journal?  I read some of it. There was too much - lol. I took it to Vegas to Dad. :-)

"You Can Make It If You Try", Sly and The Family Stone". Perhaps it was Larry Graham's bass that turned me to funk at a young age?  Lol. I mentioned getting button holes at dialysis.  What are they?  In a nutshell, it's creating a single insertion point when the needles go in. In order to develope the button hole, the tech inserts the needle in the same hole at the same angle and same depth.  Prior to this, my sticks were like a ladder, up and down the length of the fistula.  Now, it's one hole for venous, one hole for arterial.  The benefits include, it doesn't hurt, it greatly reduces the chance of an aneurism (those large unsightly lumps I've seem on other patients) and needle infiltration (the needle comes out or misses the vein). Did I mention less pain on insertion?  We're still creating the button holes. They should be fully complete in another 4-6 weeks, but already, it doesn't hurt.  Finally, the needles will be blunt because the hole is established and I'll be able to cannulate (stick) myself!  Heh. I've come a mighty long way in a year. From the chest catheter to eventually inserting my own needles. :-)

So what does this have to with my trip to Vegas?  "I'm Every Woman", Whitney Houston.  I like this version better than Chaka Khan (duck). BUT, Chaka's version is great also.  Trip, needles....Remember I said the button holes are created by the same person sticking the same spot at the same angle and same depth over a period of time (about 8 weeks)?  Well the trip was about 3 weeks into the process. My tech, social worker and head nurse contacted the center in Vegas to ensure I'd get the same tech each visit to continue the button hole.  This requirement affected my time. I was scheduled for 2:45 PM  ( 5:45 PM Detroit time ) for the three days I went to dialysis. :-(

I get to there on Wednesday and give the tech my instructions.  The nurse and center basically said , "oh hell naw.  We ain't messin' with any midstream button hole".  Who was I to argue?  What was I going to?  Refuse treatment?  I don't think so.  Had I known they weren't going to do the button holes, I'd come in in earlier when the center called and asked me to come in at 10 AM.  I was getting out between 6-7 PM on that late shift.  Then had to go back to the condo and cook dinner.  Lol. And you just know those had to be draining dialysis days.  Anyway, you do what you have to do. :-)

Roy Ayers, "Mystic Voyage". My Ivy line performed to this song. I still remember the moves. I have no idea why.   Lol lol.  Did you chuckle at the selfies of me and Dad?  We looked like we had no clue what we were doing. (We tried). My kid and my nieces and nephews do it so effortlessly.  Lol. Shawn told me to practice more a and smile instead of frowning.  Lol. My niece does it with the mirror and looks gorgeous. I do it with the mirror and look like a clueless crazy lady.  Lol lol lol. You try it and let me know how it goes.  I have a crapload of selfies that will never see the light of day....and that doesn't include the ones that got deleted immediately!  Lol

Photos of button hole stuff.  Signing off with "Virtual Insanity", Jamiroquai.  Nice song. Great video. :-)

The "It's Rather Cold in the D", edition

iPod shuffled to Stephanie Mills, "Home". Ok. I am to through with this iPod. I just arrived home yesterday evening, and this thing shuffles to "Home".  What are the odds?  Lol. Yes, I went to Las Vegas to visit Dad last week. I told you I missed him.  We missed each other. :)  I'd made the reservations, then told him I was coming out.  He was pleasantly surprised. When we were making the trips to Champaign to move Shawn, he suggested we stop in Vegas.  He said he was just kidding.  Yes, of course he was. ;-)

So I started the travel process with the dialysis center...again. We've got it down to an art now.  At some point it seemed as if all the nurses commented on me traveling yet again.  I'm giving the admin staff a workout on the travel process.  And yep, there's more to come.  :-D  I went to the same dialysis center in Las Vegas that I was treated at in February.  Even had the same nurse, who remembered me. :-) For those familiar with Vegas, we stay near Desert Inn and Maryland(Swenson).  The center I'm assigned to is right at Meadows Mall.  About a 15 minute drive, as long as we cross the strip at Desert Inn.  Crossing at any other street, all bets are off. Lol. 

"Since I Lost My Baby", The Temptations.  Written by Smokey Robinson. Music by Funk Brothers and Detroit Symphony Orchestra.  Lead David Ruffin and Melvin Williams. Genius, one of the Temptations best. Ha, I just looked at the iPod. It's still on a Vegas time. And it's chilly in here. I need a hat.  I've really gone off track.  Lol

I've learned from previous travels.  Instead of leaving immediately after treatment, and perhaps being spent and tired before the trip even starts, I left on an off day. D'uh. Lol we are retired, after all.  I didn't want to spend four hours on the plane after dialysis. Leaving Tuesday afternoon allowed us to arrive in Vegas on Tuesday afternoon. Lol - the time difference has us arriving about an hour after we departed.   We arrive, Dad picks us up, takes us directly to Boulder Station for lunch.  After we eat , we spend an hour fooling around in the casino. Yes fooling around.  Lol. The machines said, "Hey, we missed you.  Now give us your money".  Lol. After an hour of being mistreated, it's time to go.  Lol. 

We get to the condo and plan out our week. We plan a menu for the week.  We're going to fix a bunch of meals to freeze for Dad. I'll tell you how many meals we ended up cooking later.  We have to plan around my 2:45 PM PST (5:45 PM EST) dialysis time.  You know I'd rather have a much earlier time, but I'm a "transient" patient so I get what I can.  In addition, my center started me on button holes and wanted the same person to cannulate (stick) me each time. So I got the same shift for the 4 days I was there.   The late time turned out to be interesting.  I'll go into it later. And explain button holes. 

Ok jet lag is setting in and I'm getting sleepy. We left at 11:45 AM and arrived at 6:30 PM.   I'll let you do the time math. :-).  My head is still cold. :-(  Photo of me and Dad trying to do a "selfie". Shawn tells me to quit making faces when I do them. Lol. Signing off with "Grapevyne". That will lull me to sleep. :). Have a great day and stay warm.  

The "I'm Running Late All Week. Day 3", edition.

iPod shuffled to Sir Mix A Lot, "Baby GotBack". "So Cosmo says your fat, well I ain't down with that". How's that for some self esteem....or something?  Lol. I have a topic for today. I wasn't sure I wanted to write it. I asked Brian what I should write about.  He suggested Jim Leyland.  Lol. We discussed him and the Tigers, who might be traded, good riddance to some of the coaches. We debated how they fizzled vs how they ran into "a buzz saw called the Giants" last year (Brian's words). But I'm not writing about that now.

I'm scared. I know have a positive attitude, but that's just me.  My glass is always half full and I usually am not satisfied.  I want to fill the glass to the brim. Right now a full glass of water would be a treat ...rimshot (dialysis humor). Parliament, "Flashlight". Funk at it's finest. Lol. Who started bopping their head at just the mention of "Flashlight"?  Anyway, in spite of the half full glass there are some realities I have to come to terms with. My odds of dying within five years are high. Of course I do what I can to prolong my life, but there are variables that I cannot control. 

My family and friends are smart. We read. And with the internet there is.so.much information. Lol. Learning comes at a price. You get the good, the bad, and the frightening. Well, as I researched kidney disease, kidney failure and dialysis, I got just that.  I am getting the frightening.  The Facebook support group is a veritable gold mine of information. It's also a world of reality. Rachelle Ferrell, "With Open Arms". Her voice, the range, omg. I can't even sing along, I just join the backup singers - lol.  The support group is a virtual family.  We go to appointments with each other.  We go through procedures with each other.  We comfort each other when we get test results that are funky. We rejoice when a kidney is available for someone. We talk each other off the cliff. We convince each other to not skip a treatment. We fret for the guy who has no insurance and must go weeks without treatment. He's been absent for a few weeks..we don't know what's going on.

We comfort people who have had people die in the chair next to them. We're on a journey with founder of the group as he's fighting an infection and assorted complications. He's been in ICU for over 2 months. Doctors have to try new therapies or guess at solutions to treat the complications.  We supported the family who's baby was born with a kidney disorder. She survived 2 months on dialysis until the doctors said there was nothing more they could do.  The parents dressed "Baby Claire" in a little princess outfit and said their goodbyes. I pretty sure the virtual support group cried real tears. I know I did.  I'm tearing up as I write this. 

Beyond my virtual group, I have my people here.  I've arrived to treatment only to be told someone at the center has died.  My soror died a few weeks ago. A young man passed.  The guy next to me was hospitalized over the weekend. The guy across from was gone for a week, he was hospitalized also. My dear childhood friend who has kidney failure and helped me cope is hospitalized for a few weeks fighting an infection. 

This is my reality. I do well. I smile. Most days I feel great. Some days, not so much. I wash my hands.  I carry sanitizer. I'm a bit paranoid about crowds now. I had a flu shot. I'll probably will get a pneumonia shot.  I'm still at the mercy of chance. 

Five years. 

So I'll lighten up with my sign off song.  "Gold Digger", Kanye West, featuring Jamie Foxx. The rated "M" version. Jamie does a great impression of Ray Charles.  "Get down, girl gon' head, get down".

:-D

Photo of Baby Claire with permission of her father.

The "I'm Running Late All Week", Day Two.

Ipad shuffled to "Rock On", David Essex.  High school.  10th grade maybe?  Anyway.....   My blood pressure cuff seems as if it's set to go off every 15 minutes. :-/   Ok, I need to clarify what I typed on Wednesday.  I was referring to statements made by other patients on a dialysis support site. I've only asked 1 person for a kidney (I'll get to that in a minute). If some had wanted to test for compatibility , I figured I'd hear by now.  And understand, I don't expect anyone to offer a kidney. Honestly, I don't know my response if the situation were reversed.  Lol. It should be easy for me to say now, "of course I'd offer".  But I can't say.  The best I can do is to make sure that after I die I make all viable parts for transplant. My liver is still good.  Take it!  I will ask that you consider donating your organs. Please.

Now, for the person I did ask...  Brian and I were talking about this and Dad was eating breakfast.  I say, "Hey Dad, can I have one of your kidneys when you die?".  While never missing a beat while eating he says, "OK".  Lol.  Dad says it's an old kidney.  I tell him it's ok.  For transplant, I ve been approved to take just about any kidney that's offered.  Understand that some kidneys are more, oh I don't know, purer that others?  "Do You Love What You Feel", Rufus (featuring Chaka Khan). Your head starts the bounce immediately, but I ask again, who is Rufus and where is he now?  Lol. The conversation between me Dad was not morbid. It's just us being us. :-D

Back to kidney availability. I am eligible for all kidneys, even those from older people.  Of course the lifespan of the kidney may not be great, but it could be viable for quite some time and my lifespan.  And really, why waste a the kidney of a 20 year old on my 56, soon to be 57 year old self.  Or as Dad says, Yer almost 60!".  O.o  lol.  Oh yeah, I can reject an available kidney.  I'm not clear on how that affects my place on the line. 

Also I mentioned friends and family just plain out avoiding people because of the kidney disease.  It breaks my heart.  Husbands/wives have been divorced because of the kidney disease.  Siblings or even parents have lessened or cut off contact of the person with kidney disease. ;-(   Young people, 18-30, worry about their futures.  Family and friends blaming the patient for "catching" kidney disease, or dismissing kidney failure and you should suck it.  The stories go on and on.  Now of course many also have a strong and supportive network (raises hand).  <3

It's been almost a year since I've started this journey. I'm going to go over and review. The original text was copied from Facebook and difficult to follow.  I'll also compare how I was then with how I am now, and the possible paths for my future.  Signing off with Seal, "Kiss From a Rose".  Isn't this a beautiful song?  Have a great evening. :-)

The "I'm Running Late All Week. Day One", edition.

iPad shuffled "Portuguese Love", Teena Marie.  This my favorite Teena song.  I'm coming up on my first anniversary of kidney failure. It's also just a little past a year that I quit smoking. That was double edged sword. I felt too bad to smoke.  So there you go. For me at least. When I leave my treatment, I see patients smoking outside before treatment and patients waiting for their ride smoking.  I don't judge.  I can't. I was a smoker. I get it. And we're all adults and know what we're supposed to do. Lol. Like the patients eating a bag of chips in the waiting room before treatment.

I get it.  The renal diet is restrictive.  Add the diabetic diet for many of the patients. :-(  You feel like you are being deprived.  The scenario goes like this:  My kidneys have failed.  Three days every week I have to come to this sterile clinic for 3-5 hours to stay alive. I have get stuck with two needles each visit.  And I must give up foods I like. I have to take meds for things I never even heard of, because dialysis still needs these meds to work.  "Take Me as I Am", Mary J.Blige. It took me a while to warm up to her, but warm up to her. I did. :-)  .  My friends and family can't understand what I'm going through. They tell me to get over it, or even worse they avoid me. I'm eligible for a transplant, but my family doesn't offer to get tested for eligibility. Then avoid me. ...end scenario. So yeah, I'm not going to judge.  I think this is what is leaning me toward being a mentor. 

I was asked what topics as a mentor.  Here are some and why.  What types of kidney failure. There are 42 of us patients on each shift.  We all had different reasons why our kidneys failed. Some of us are quite cranky. I think we as patients need to understand there is going to be a wide range of emotions at any given time.  Sometimes we just need an ear or need to commiserate with someone who is experiencing some of the bizarreness of failed kidneys or dialysis. I'm in!  

Lol. I feel fine, in spite of the maudlin post.  Oh yeah, the staff wears protective lad coats and plastic face coverings, in addition to the face masks and the gloves.  It's like being on a hazmat site and you are the hazardous material. ;-/   Oh well.  

Signing off with "Regulate", Warren G. Jazzy rap.  Yeah!   Have a good evening :-)