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 :-)

The "Old Dogs Can Emit Some Interesting Smells", edition.

iPod shuffled to Dizzy Gillespie, "A Night in Tunisia". My dad introduced me to Dizzy's cheeks.  ;-)  I also like Chaka Khan's version.  I was accosted by a random bad smell. A smelly smell. It was my old dog. Lol. Now I know where these offensive odors are coming from.  Sometimes she jumps up and barks.  We're like, "Hey, that was you, quit faking!".  Lol. Ramsey Lewis, "Love Song", from the Sun Goddess album. Kick ass piano.  This song is just as good as the title song.

I've decided I'm going to Ohio to visit my brother and other relatives.  I'm going to see my aunt whose kidneys failed around the same time as mine. I probably need to let my brother and sister-in-law know we're coming.  I haven't set a date yet. :-)   I've always enjoyed going to Yellow Springs.  It's the anti-big city.  I remember when KFC wanted to build a franchise there over 30 years ago and they weren't having it.  KFC did eventually get in, but it's on the edge of town and no other fast food franchise ever entered.  If you want a Big Mac, go to Xenia.  Lol. 

A conversation I was in recently was about our caregivers. From the perspective of the patient, it's sometime all about us.  We are the center of attention. So who is taking care of the caregiver?  They need love.  They need a break.  I've got to say Brian was a magnificent trooper.  He never missed a beat.  In fact he moved up his retirement, despite my protests.  He chauffeured me to all the appointments, woke up at 5AM three days a week to get me to dialysis and prepared meals for me.     But he is not with me 24/7.  He's involved with other activities and that's a great thing. There is no doubt in my mind that he contributed to my recovery and my attitude. 

So now I'm clearly not stuck in bed, although on some dialysis days, I am whupped and sleep.  The Whispers, "Don't Be Late For Love".  Lol. I cranked up the volume started swaying.  They are right behind the Dramatics. *sigh*.   Anyway, fast forward and I am pretty independent. Sometimes I have to convince him I'll be fine by myself. I call him my helicopter husband.  He agrees and is proud of the designation. :-/  lol.  

Here is a trivia tidbit from the kidney failure saga. The months before I retired, I didn't mind going to work, but the physical act of going to work was challenging.  Walking from the parking structure to my office wore.me.out.  On his days off, he'd drive me and pick me up.  Well I figured since I was retiring, I didn't need a car.  We could downsize.  He and Shawn had a car if I needed one. Well he decided I needed a car, but maybe a smaller one?  I relented.  I got a Fusion in August. But I would miss my Taurus. I loved that car. *sigh*.  Anyway, I had a new car, but didn't feel like driving.  I may have driven no more than 5 times before I ended up in the hospital.  It took about 8 months to get 1000 miles on it. Even now it just pushed 4000, and that includes a single round trip to University of Illinois, Urbana-Champaign.

Skyped with Shawn last night. The dog heard her voice and started looking for her. <3.  Signing off with Jamie Foxx, "I Don't Need It". "Like a glass of water in the desert baby". Lol.

The "Dan Petrie Said Verlander Was the One to Go With and I TrustedHim!", edition

iPod shuffled to "Midnight at the Oasis", Maria Mulduar. "Let's slip off to a sand dune, real soon, and kick up a little dust".  !!!!!!   Lol. Well, that's a suggestive lyric.  Lol. I didn't want to watch the Tigers game. But Brian came into the room and held my eyelids. Then he fell asleep.  Roflmao. We bailed at the bottom of the eight.  It was delightful to wake up to the win. :-)

Ok, just a reminder.  I type the blogs in its entirety with my right index finger.  Because my left arm is incapacitated.  You know, needles. Lol. My my right wants to cramp.  That's a first. Anyway, I've been coming to this center for almost a year.  I've settled in. Have gotten to know staff and patients. I've built relationships...within the context of the center.  I'm attached to MY tech.  I think you know that lol, but I haven't met a cranky tech.  Even the one I went off on.  Even though it was a function of me having dialysis, I was unnecessarily rude....I apologized.  I think all of us patients feel funky, angry, depressed or hopeless every now and then.   Note - I said every now and then, not it happened it just once and we got over it.  "Check It Out", The Tavares"....(secret..Brian sings this to me .... <3). 

The nurses are all pretty cool and professional. They don't take any crap off of us, not that "I" give any. Really I don't. Lol. Even when they poke and us to see if we've retained any fluid.  Thanks to my mom, I have really skinny ankles.  Daddy and I used to tease her about her legs look like chicken drumsticks. Guess who has chicken drumstick legs now?   Lol. Karma again.   BTW, my tech has cannulated (stuck) nine people so far today.  I told you she is good. :-)

TMI alert!!!!   I may have mentioned that people with kidney failure, on average don't pee. Would you rather I use urinate?  I'll hold my pinkie up.  Lol. Well I pee and I pee copiously.  This was discussed when I first started dialysis.  That gave me high hopes.  When the nephrologist, nurse and dietician told me it didn't much, I was devastated and I finally accepted that dialysis was going to be my life.  Well iit came up again.  Nephrologist suggested I may still have some kidney function (! Cautious hope !). "Spread My Wings", Troop.  Whatever happened to them?  I see they were produced by Chuckii Booker. ....research break... Apparently they all became successful producers. Good for them!  Hope they ditched the Jeri Curls. Lol. <maniacal laughter>. Ahem, back to business. 

So I'm going to get some tests to see if I really do have some kidney function.  One of the indicators of functioning kidneys is yellow pee.  Clear pee means no toxins are coming out...bad.  Foamy pee means you're  losing protein....bad. See there,  I taught you something today. :-). Finally, back to the one finger typing.  I apologize for typos and grammatical errors. I really put a great effort in editing, but I still miss a lot of errors.  Lol. I catch quite a few errors before I publish.  Just imagine what the blog could look like. <sigh>

Signing off with Detroit's own, Kem, "You're On My Mind". Volume is cranked up on this one.  Boston, Scherzer, Hunter, Cabrera, Martinez, Infante, Fielder, Fister, Benoit, Verlander, et al, and Leyland (Hillbilly Bear-remember that cartoon?  You get all kinds of points if you catch the connection...lol). Have a wonderful weekend. ;-D

The "I'm Moving Forward in Dialysis", edition.

iPod shuffled to The Temptations, "Runaway Child, Running Wild". Junior high.  Lunch time. Entire lunch room singing. Lol. Something new with my vascular fistula.  When it was mature enough, I started getting stuck (cannulated).  The sticks were moved up the veins each treatment. Well, a few weeks ago, a nurse said it was time for button holes. Ok, what are button holes?  The tech creates a holes that she cannulate the same hole over and over.

My tech uses the same site, at the same depth at the same angle each and every cannulation creating a tunnel track like an earring hole. Some of the benefits are the cannulation is less painful.  That's fine. The sticks don't  really hurt now AND I'm given a numbing cream to apply before I go to treatment. And the cream is covered by the clinic. I think it's a Medicare thing.  One day I'll go over my medical coverage. Ok ok more benefits the button hole is fewer missed sticks ( hasn't happened...yet?), fewer infections, fewer infiltrations and hematomas. The technique is also less time consuming. "Why Leave Us Alone", Five Special. I told you I grew up with the bass player. I started quizzing him on the arrangement and production of the song. He invited me to a studio to go over the questions. :-). Unfortunealty I was deep in the throes of kidney failure. I'm gonna hold him to the invitation eventually.  The most impressive benefit of buttonholes is that moves me closer to self cannulation. 

Self cannulation. Wow. That gives me more control over my body and treatment. It also scares the crap out of me.   But I see a handful of folks doing it in my center. And diabetics inject themselves. People who have severe allergies may have to inject themselves with adrenalin.  So I'm not that special     More than one of the staff here would like me to able to self cannulate when I travel.  I like the idea so a stranger is not sticking me.  The staff here want it to be known that they teach and support their patients. "Our center is better than yours....neener, neener". Lol 

Most of the issues that buttonhole fixes I haven't experienced, with the exception of the hematoma.  My hematoma was created after the surgery in March, rather from dialysis. My arm was numbed for over 12 hours requiring an overnight stay in the hospital.  A nurse checked on me around 11 PM. I was asleep until she woke me.  A hematoma ( big ole bubble of blood under the skin) had formed on the surgical site and burst or something.  I was swimming in a pool of blood in the bed, but since my arm was numb, I didn't have a clue.  The hematoma from dialysis is from the blood glowing threw the man made fistula.  And no, I don't a hematoma or an infiltration, but I can see something going on on my arm. The mutilation has begun!!!!.  I'll post my arm another day and a photo a photo of a fistula during the surgery.  The photo app is having a tantrum today. *sigh*. 

So my buttonhole is coming along just fine and I'm good. ;-)  Signing of with the Whispers, "My Heart, Your Heart".  I also created my "I'm begging for a kidney", Facebook page, but it's not ready for prime time. Lol. 

 

The "Some Events in Our Lives Stay With Us a Forever", edition.

iPod shuffled to The Main Ingredient, "Goodbye My Love". I really enjoy Cuba Gooding's voice. So unique and recognizable. So yeah, memories.  Lol.  Gonna do a "Connections" type of thing. Do you remember the TV show "Connections"?  I want to say it was on PBS, but I'm not sure. Anyway, my dad got me interested. An example of an episode would explain, how the creation of the longbow influenced the creation of the computer.  I'm going to have a starting point and end with a connection to dialysis. "I Just Want to Celebrate", Rare Earth, Motown. ;-)  So my starting point is Shay Lake, Michigan and I'm about age 15.  

I've mentioned before that my family had a summer cottage at Shay Lake.  Shay Lake is about an hour and a half drive from Detroit, in Tuscola County, Michigan. Closest villages are Mayville and Kingston. Caro is little further.  Marlette is further still.  Sandusky to the east and Saginaw to the west are about the same distance at around 30 miles. The cottage was small. Two small bedrooms. One large rectangle room served as the living room and dining room. The kitchen was separated by a bar/counter.  A final room we called the back porch where there was a side door. It also served as storage, until dad and his crew built a garage (that's a story for another day). The bathroom was tiny and the shower stall was a contraption that was not built in. Lol. We had to turn on the water to the cottage when we arrived and turned it off when we left.  And the roads were all dirt roads. Ok. Enough of a description. Those of who've been there know exactly how it looked.   :-)

My friends and I all had some type of small motorcycle. Not a mini bike.  We spent our summer weekends riding those bikes or swimming in the lake. The property owners association built us a basketball court. Well actually, they rounded us up to build the court.  Yep, enough of our parents were contractors and we'd be recruited for cheap or volunteer labor. Lol. I'll elaborate on that another time.  We got skills.  ;-D.  We rode the bikes around Shay Lake, the farms and country side. 

We found some of the most magnificent places. Hidden lakes, hidden dog kennels. Fields full of wild flowers. We'd just stop and admire, or get some fishing poles, or go in the evening to roast marshmellows.  How many of us?  The number could go from 8 to 20 kids or more. But there was a core group of about 8. Anyway, my favorite spot in the whole.wide.world was the field of wildflowers.  This field is the start of my connection. 

"Take Me As I Am", Mary J. Blige. The next connection. My senior year at my all girls Catholic High School - Immaculata, we had a senior retreat at Cappucin Monk mansion in Grosse Pointe. One of exercises, we were in the basement and taught relaxing techniques.  The floor and walls were covered in carpet. Once we'd mastered relaxing, a tape of the last days of Jesus was played. I recall being so immersed, that I felt like I was there. Of course I also remember a few snores - I ain't mentioning names. Lol. One of the techniques was to find that place that makes you happy and calm.  

Stevie Wonder, "Superwoman (Where Were You When I Needed You)". This is where I lost WiFi. Next connection. The relaxing techniques have stayed with me my entire life. So now you get it.  My happy place is that hidden field with the wildflowers. It's been my relaxing place for almost forty years. During the sticking of needles or when I am anxious, I immediately go to my happy place. Lol. Everyone needs a happy place. When I'm there, I immediate relax and can move forward.  

So there you the dialysis "connection".  I talked to the IT tech at the center about losing WiFi the last several days. He suggested that Henry Ford may be doing an upgrade.  Been there. Done that.  Hopefully it'll be completed soon and I can push out the blog at its earlier time. 

No sign off song, as I am home now...Have a great Monday and Go Detroit Tigers!!!!!

The, "I'm Late Today. Let's Thank Back Spasms For That"

National Kidney Foundation Advocacy in Action

iPod shuffled to Christopher Williams, "Dreamin".  Heh, these back spasms are more like a nightmare, rather than a dream. I have no idea what my original topic was for today.  Pain makes you concentrate on pain.  Since Sunday afternoon I started to experience mild spasms on my lower right back. I thought some Tylenol and a heating pad would take care of that.  Well no. It didn't.  Monday morning, I took some Tylenol and went to dialysis.  The lead social worker noticed I had a pained smile (what...are social workers psychic or something?).  I told her about the back spasm. She suggested I let the nephrologist know.  Perhaps he'd prescribe muscle relaxant.  That would be cool, except I wouldn't see him until Wednesday. 

I made it through Tuesday with heating pad and Tylenol.  Tuesday evening I hurt a bit too much to climb the stairs. "Nothing But Love", The Five Heartbeats". Who doesn't like Choirboy on this song. In the movie, the music moves him and he hits and holds that high note.  Lol.  So Tuesday night I slept downstairs.  Still treating myself with the heating pad and Tylenol.  Doc did his Wednesday visit. Told me to try Aleve.  Was ok and able to climb the stairs.  Thursday was fine until getting ready for bed.  I could barely move. Spasms ahoy. I slept downstairs.  

I awoke this morning feeling fine until I tried to sit up.  Have you ever had muscle spasms in your back? Some moves make you stop instantly, like playing freeze tag.  Well it took me 90 minutes to get out of bed. ;-(  I'd sit up, the spasm would start. I couldn't even lay down quickly to ease the spasm pain. I'd have to freeze and try to relax my body.  I did this for 90 minutes, making more progress, until I could stand up.  Of course I've missed my chair time. "Sigh". 

Instead of going to the treatment center, Brian took me to ER. Of course, the pain had decreased dramatically.  I did have residual pain, which allowed me to be functional.  The resident and the ER doctor were satisfied that I did have muscle spasms.  They had nothing to do with the lack of functioning kidneys. (Well that's one good thing!!!).  I was given a muscle relaxant at the hospital and prescriptions for the muscle relaxant and pain killers.  Sly and the Family Zone, "Sing a Simple Song".  Another album I wore the grooves off!  You know I like funk. 

I'd called the dialysis center when I realized I couldn't get out of bed and let them know I was going to ER.....once I could move.  Once it looked like I'd get treated for the back, I called center again to see if I come at a later time.  They called me back and gave me a time.  I made it there, chock full of muscle relaxant..and a little smiley (!).  

I'm home now, with my heating pad and we'll see how it goes.  No sign off song.  Midway thru typing, I lost the WiFi connection at the center, but still have a great weekend.  Also check out the link at the top. It's information on Medicare cutting off post-transplant drugs after 3 years. WTF???.  Hint::::blame the lobbyists for the for-profit dialysis providers.  Remember, $75,000/year for dialysis, $17,000/year for post-transplant drugs.  If you lose your drugs, you get back on dialysis and start costing $75,000 again. Fiscal responsibility, indeed.

The "My Training Still Comes in Handy", edition.

iPod shuffled to The Time, "777-9311".  80's on the house!!!  "You know I got to be better than this cat you're sitting with".  When I worked for the City, I received a cart load of training. I don't remember all of it.  I do remember CoD Supervisor training.  That included some leadership training and City policies.     We spent a week or so on Steven Covey's "Seven Habits".  I had massive training in Project Management.  Then there was Business Process Reengineering.  I spent a month in a Leadership and Mentoring program.  These are the ones I remember.

"April in Paris", Count Basie and Quincy Jones and His Orchestra.  Dad had me listening to this...the ending lasted about a minute and a half.."Let's try it one more once". Lol. It was also in my most favorite movie of all time. To this day, and even though I've watched Blazing Saddles well over 100 times, seeing Cleavon Little (Bart) on his horse decked out in Gucci stroll out into the country side and seeing Count Basie and his band playing "April in Paris", makes me laugh. (Sorry for the long tortured sentence). 

I facilitated business process changes for both the police and fire departments. I led the implementation of project management in my department. I also consulted on on the implementation of PM in other departments.  I eventually managed project managers.  I mentored City employees on how to evaluate their staff, including department executives. I mentored my own staff to the extent that the most are now City executives or have moved on to leadership positions in other companies. <3.  In other words, I put my training to use.  

So here I am retired and in dialysis.  I have gotten better and am ready to do something, other than focus on getting dialysis, trying to walk.....   I receive a letter from the company of my dialysis provider.  I've been asked to be a part of their peer mentoring program (!).  I noticed that one of the employees on the RSVP list was a social worker at my site.  Note that I didn't say my assigned social worker.  This one of the three social workers.  I've mentioned the lead one who gets me to walk in walk-a-thons.  I've mentioned my assigned one, who helps me with travel and does assessments.  The third one is the one who caught me weeping while I was listening to a song.  She came over to talk.  We talked about music, playing the piano and shy I had a reaction to the song I was listening to.  She asked for the name. I gave it and the composer to her. She listened to it when she got home!  Lol. She was responsible for submitting my name for the programming.  

So I'm playing it cool, but peer mentoring is right up my alley!  I'm just wondering why I was selected.  I've never mentioned my training to anyone.  I don't think I'd even mention my work background to anyone.  The introduction to the program was Sunday.  Apparently the company is starting the peer mentoring program.  I'm part of the inguaration group.  I'm excited!

So now you say, "Well Pat, that's nice, but what is peer mentoring in this context"?   Well no one really knows what being on dialysis is like more than a dialysis patient.  At the very least the peer mentor can listen.   We can a answer questions someone new to dialysis may have, from the perspective of a current patient. This is the short answer.  I belong to a dialysis group on Facebook. We mentor each other. Questions asked, questions answered.  Experiences shared.  It's nice that there are people who experience what you experience.  You are not alone in your dialysis experience...like almost all of experience periods of depression and hopeless.  We can shares our fears.   We can vent and there are others who can commiserate and offer you support and encourage the venting.  The peer mentoring will share some similarities, but it will be more personal, with real live people, face to face. I'm thinking the training I received in my previous life will be quite useful!  :-)

I'm looking forward to this experience and will keep you updated on how it progresses.  Have a great "Hump Daaaaay".  Signing off with (again and so what - lol). "Grapevyne", Brownstone.  I was telling Brian that I have over 400 songs on the iPod and it will repeat some songs over and over,  and the surprise me with songs I forgot about. Silly thing.  Lol.