The "Dialysis and Blizzards", editions.

iPad on Tower of Power, "You're Still a Young Man". Horns. Horns. Vocals. Horns. Watching the weather on the east coast scares the day lights out of me.  Dialysis patients  unable to get to dialysis.  We have supplies for a 3 day emergency diet.  But we can tolerate only so many days before life threatening fluid retention occurs.  And can you imagine how the following dialysis treatments will be?  I can tolerate the removal of 3 kilograms, tops.  Anything after that my blood pressure drops dramatically.  It would take several days to get me back to "normal" - getting back to my dry weight.  Drinking about 16 ounces of fluid a day. :-(    In the meantime I'd be feeling miserable and out of commission. Breathing would be difficult because it's been established because the fluid goes to my lungs. Ugh.  Some patients in the south and east, if they can make it, have had their times cut. Not cool.

I wonder if I were able to reach a hospital if I'd be able to get treatment.  Heh, they'd probably have to do an insurance check. Sorry Mrs Fields, we don't accept your insurance. That certainly is a possibility. Speaking of insurance, an agent from Blue Cross called Friday afternoon, asking more questions.  She then said, oh, you should go through the City.  I shouted, "No", as it appeared she thought the issue was solved and was on the verge of hanging up.  I told her I'd already tried that and I was ineligible. I'm thinking, why the hell do you think I'm going the Medicare Advantage route?  You know, the federal government part went quite smoothly.  The private insurance part is a clusterfuck. ;-(

Aerosmith, "Dream On".  Raise those lighters. My Wendell is at home and is adjusting to hemodialysis (HD).  He had been on peritoneal dialysis (PD). but that was the cause of his infection.  HD is rougher on the body than PD. HD is hard core concentrated dialysis, 3 days a week. PD is 3-4 times a day and at night, daily.   It's better, in the sense that there is more dialysis more often.  It is also a portable solution.  The drawback for me was I would not be able to go swimming.  See the link at the bottom for how PD works.  Anyway, Brian and I dropped by yesterday to bring him some chicken salad. He's eating (yay!!).  And ditched the walker (yay!!!).  "Green Light", John Legend featuring Andre 3000. Interesting duo, but it works.  He's looking better. We talked about HD and recovery of coming out of ICU. We talked about the catheter and the fistula. I told him it just takes time. And some HD days are better than others. And it's  OK to just be pissed. 

Watched Dreamgirls over the weekend.  Enjoyed it all over again. Lol. Jamie Foxx sure did play a hateful person.  My last hateful character was Mister from "The Color Purple". Took "Dreamgirls" for me to forgive Danny Glover - lol.  Jamie Foxx was able to overcome my hate.  I think because I'd seen him in other movies and TV shows and like his recordings.  

Signing off with Kool and the Gang, "Open Sesame (Part 2). " I am the genie of sound. Everybody get down."  :-)   More snow today. Really?  5-6 inches. Really?  Betcha I won't be here next year to experience any snow.  Have a great day.  :-)Peritoneal Dialysis

The "I Forgot to Tell Brian Happy Valentines Day. Oh No!!", edition.

iPad shuffled to Frank Sinatra, "Lady Luck". I'm picking Frank singing this over Marlon Brando talking it through with a bad gangster accent (Guys and Dolls ).  One of my favorite movies. Quick insurance update.  I got a letter from Blue Cross indicating they needed more information...see checked items.  Of course there were no checked items just a stray statement saying I have ESRD.  I'd like to think this was taken care of when Blue Cross called on Tuesday.  However I called Blue Cross, just in case. The representative pulled up my file and was just as puzzled as I.  She asked for proof of previous insurance. Dunno what that has to do with anything. She then asked the bonus question. When did I enroll in the previous program. WTF?  I. Don't. Know.  Anyway, we guessed ( it's a long story ).  She did understand the urgency, but has to forward the file and application to a specialist. I should hear back next week.  Needless to say I'm keeping my cell phone close to me. *sigh*.

Yes, I made it all the way to treatment and I forgot to tell Brian Happy Valentines Day.  I did kiss him and tell him I love him. But I do that everyday. Often.  :)   He's my husband, my friend, my partner, the love of my life, my cheerleader....the list can go on.  He's also my caregiver. Never saw that one coming.  But here we are. I alluded to it a few days ago when I mentioned he had to dress me.  I fought it, but he wouldn't let me. >:-(    When I wanted a shower, he was there holding me up and helping me. He helped me up and down stairs.  When I thought I could get on the floor and then couldn't get up, he was there.  He cooked me renal safe meals. He went shopping for clothes for me because nothing fit. He listens when I rage about my kidney failure. He assures me it's ok to rage.  He would pull up to standing when I didn't have the strength to even stand up. 

The Jackson's, "The Way to Go".  He wipes my tears. He makes me laugh. He gets up at 5AM to drive me to treatment ... Even though I assured him I can do it.  Lol. I had trouble buying him Christmas gifts because he insisted on driving me to the store, then following me around. Lol. I know that sounds odd, but since I've had episodes of low blood pressure and almost passing out, he likes to be nearby. He reassures me I look pretty, even when I'm feeling really punky. He'll walk by and greet me with a "Hey sexy". I'm not sure he realizes how much he lifts my spirits. :)  He retired a few months early to take care of me. 

I'm considering home hemodialysis.  He volunteered to learn how to stick me. When we travel and it need dialysis,  he'll wait in the waiting room for 4+ hours for me....unless we're in Vegas, then it's off to Arizona Charlie's. Lol.  Heart, "Crazy on You".   Liking the guitars at the beginning.  He does so much. He's the ultimate caregiver....and supporter.  By him doing so much for me, I felt the need to ease his burden.  It was important to me to not be so weak. Both Brian and Shawn called me frail. That horrified me. I've always been strong. My job was to ease up on my dependency on Brian. I felt like I was working him to death.  But you know what he said?  He told me he loved me and that was exactly what he wanted to do.   .....

So everyday is Valentines Day in our house.  But when he picks me up,you better believe I will tell the love of my life Happy Valentines Day!!!!

No sign off song because there was no WiFi this morning, but I'd set it to Al green, "Let's Stay Together".  Have a wonderful day and a wonderful weekend!!!

The "How To Get Along With Others", edition.

iPad set to Apple Radio funk station. I had "Word Up" by Cameo.  I was apparently trying something fancy and deleted the paragraph I had typed. ;-<   So now I have The Blackbyrds, "Rock Creek Park". I've been to Rock Creek Park, but I didn't do anything special there.  Lol. Health insurance update. We left off with me almost in tears until I got the lady with the southern accent at Medicare.  She helped me select a plan. We ran into a stumbling block.  I couldn't enroll for a March 1, 2014 date until February.  I called last week. Of course I got someone else. However lady with the southern accent recorded everything in my file. <3. All that was necessary when I called back, was to start the enrollment process.  And that's exactly what happened.  Yesterday I got a call from Blue Cross.  They needed some additional information and informed they we processing my application. And I am on track for coverage effective March 1, 2014.  Brian keeps bringing mail.  I told all I want to see is verification of my Medicare Advantage Plan.

My new tech is back today.  The other one can't get my upper access.  She tries once and then will call a stick team member. I'm cool with this. Chicago, " Call on Me". Thank you Sirius XM for reminding me of Chicago. And especially this song. The horns are so tight.  Anyway. I arrive to dialysis on Friday.  Somehow a raggedy blue chair was in my space. The chair had a slit in the seat cushion, and it is not heated.  Then I sit sit and the arm shelf seems off. The recline was off. I was uncomfortable.  I assumed that by Monday it would be changed. The blue chairs are holding chairs for when we get off.  (I am getting so lost in this song)...  They are not meant for us to suffer on during treatment.  I come in on Monday and the same raggedy as chair was there.  I asked the tech to change it out, please.  

She goes to a nearby module, mod 1.   The holding chair in mod 1 is a newer chair.  She unplugs the chair to exchange with my raggedy chair. The tech in that module 1  has a fit over "her" chair.  My tech ignores her, brings ther newer chair over and plugs it up.  Mod 1 tech literally has a tantrum, "My patients prefer these chairs!!!!"  I'm on the verge of telling her that her patients sitting in the newer, more comfortable, heated chairs (and they are not plugged up because they are holding chairs) for 15 minutes, is not going to trump me sitting in a more comfortable chair for 3.5 hours.  But I chilled...(quoting Oran "Juice" Jones - lol). My tech ignored her rants. Not only that, other techs and nurses call mod 1 tech out.  Anyway mod 1 techs swipes another chair from somewhere else and rolled the raggedy chair back here, right in the middle of walk way. Later on, another tech moved it out of the way.  Well, the funky chair is still here. Lol. Whatever. I still have the comfy, heated chair. :-) 

Katy Perry, featuring Snoop Dogg, "California Gurls".  Other techs have complained about mod 1 tech. They don't necessarily complain to us patients, but the annoyance is palpable. Or one tech will complain to another.  Letting off steam, if you will.  By being held hostage in these chairs, we are witness to typical, inevitable workplace conflicts. For sure, some people do not like working with each other. You can see the annoyance.  They manage to get along most of the times.  Heh, the supervisers attempt to keep certain people apart, but some days it's not possible.  And despite what I've just talked about, the incidents are few and far apart. The staff is professional. 

Signing of with Bobby Womack, "California Deamin'".  I'd say yes, but they need some more water.  Leave my Great Lakes alone.  Lol. It'll get warm one day!

The "Some Adventures Are Better Than Others", edition.

iPad set to Al Green, "Tired of Being Alone". The first time I heard Al Green I was hooked. Still am. Brian got me a four CD set as a gift years ago.  Love it. I didn't realize he lived in Detroit for a while.  You know, I've been trying to figure out how to define going to dialysis 4 to 4.5 hours, 3 days a week. The hours represent a part time job. I can define it as a job as my function is to sit patiently in a chair.  And depending on your perspective, I am patiently sitting in this chair with people servicing me.  But that's not quite right.

The Dramatics, "Ocean of Thoughts and Dreams".  This is Ron Banks song. The rest of the group harmonize so well.  Love this.  In the end I am a patient.  Going to treatment 13 hours or so every week. I have no option but to have relationships with the people here. I may not be with them as much as with family or with them as much as with my former coworkers, but we are here together. For 4.5 hours,  in chair 36 in module 6, where I live.  I've got the 5 other patients in the module. We lost old lady, but life continues and I think we have a new lady.  My tech retired but life continues.  Some techs have been assigned to replace her. 

One of the replacement techs is fine  ( although my partner doesn't like her.  There have been....incidents. I'll get to that later ). The other was not acceptable. I've seen her do questionable things and get called out by a senior tech.....like attempting to reuse a needle after it's been taken out of its packaging (!).  She gets flustered and screws up her schedule. And finally she starts praying before cannulating. Frankly I need you to be skilled to stick me.  I don't need to hear you praying for help. :-/   Stick me wrong and all kinds life threatening issues can occur.  I digress.  I won't let her near me and she knows it.  If she is there when I arrive, she goes and gets an experienced tech. I was told by the charge nurse she needs to learn. I replied not on me. Heh.  Anyway, she has been placed in other modules. And in spite of what I've said, she is a sweetheart.  I just don't to be her patient!  

Curtis Mayfield, "Move on Up".  I think he was a musical genius. And of course there was Shaft. Enough said.  So the tech that I like and partner doesn't.  She was trained by my tech, who retired. The first few weeks here, she somehow pulled the water supply hose from the wall. That was spectacular. I was just barely in the line of fire. Instant flood. The maintenance guys handled it immediately.  That didn't instill much confidence in me. Lol. At one point she did something to my partner and there was a bloody incident. He's animated,most there was a lot of yelling and cursing.  She didn't flinch. She can check her emotions. :-)  However, after that, I wouldn't let her near me. Lol. Let's place this around June 2013. 

Fast forward to September or October.  My tech was out, but we'd discuss her trainee.  My tech assured me the trainee was fine.  So I see trainee when I walk in. I sigh and told her she could stick me. Trainee was already calling someone else for my stick. Lol. She was surprised. She did nail it.  Both buttonholes. And let me say, some people have huge issues with my access. Unfortunately that was the day my venous access (upper) clotted horribly. That was the day I got stuck 5 times. I relayed to trainee it was not her fault. 

So now trainee is one of our replacements. And I trust her. She nails that stick perfectly every time. Some of the stick team can't do that!!!   So now to the whole point of this entry. She was the only tech in our module on Friday.  We have roving techs and nurses, but was alone for a while.  My partner was having issues with his access (he's had the issue for about 3 months). It was leaking. He called her over several times. Well the last time she adjusted the needle and Holy Crap!!!!!!!!  There was a blood geyser coming out of his arm!!!  He shouts out a plethora of expletives. She had been getting ready to go somewhere so she didn't have on her protective gear (paper? lab coat and face protector).  Blood was on the walls, floor and chair. Trainee had blood on her clothes, her hair, her face, and in her mouth.   Somehow I was out of the line of fire. He's about 6 feet away from me. 

Stevie Wonder, "Another Star".  Trainee called for help. Nurse 1 peeked around the corner. I waved her over. Nurse 2 was just reporting for work, I waved her over also.  It really did take both of the to get the situation under control.  Trainee went to get cleaned up and  decontaminate. Partner left pissed.  Nurse 1 cleaned up the station, chair and wall.  Oh yeah, they got a blood sample fro partner. Trainee had to go to main office.  She will probably get reprimanded for not having the gear.  She's not here today. Hope she survives. 

I'll go over other relationships. I think it's interesting how we get along....or not. Signing off with The Persuaders, "Thin Line Between Love and Hate".  I've always liked this song. "She gonna fool you one day". Lol. Words to live by. ;-)

The "We Keep Finding More Photos", edition.

iPad shuffled to The Whispers, "I Only Meant to Wet My Feet". "...you got me walking on wall to wall love".  You know I go looking for Brian whenever I hear The Whispers for my dance. :)   Well right now I'm sitting up. My BP was 195/122. :-O  That means no reclining for me. The nurse came by changed the cuff and tightened it.  BP is now 130/80.  Much better.  I can recline and not be scared. The elevated blood pressure is an indication that I'm retaining fluid.  But I was good.  I don't understand.  I'll ask the doctor on Wednesday.  I'm not trying to have a stroke. *sigh*.

Steely Dan, "Rikki Don't Lose That Number". Nice guitar solo.  I think I also mentioned that my skin was reacting to the alcohol pads used to wipe the access holes. The skin got really dry and itchy beyond belief.  I don't want to scratch the area, so I scratch around it. Sometimes it feels itchy under the skin. Ugh. I've changed to Betadine when I pull the needles.  When the needles are pulled, I place a betadine swab on the gauze and apply pressure to the hole with the gauze bad, with the betadine side in contact with the access point and skin.  Also, the numbing cream I put on before going to the clinic helps.  I also use anti itch lotion on the off days. I really can't apply the lotion to the sites until the scabs have formed.  Infection control you know. 

Guy, "Groove Me".  That song makes want to start a party right here, right now.  It also made me a Teddy Riley fan for life. Lol.  We've been cleaning and purging. More and more photos show up. Photos of mom before she got married. Dad before he got married. And when I say before they got married, it was before their first marriages.  That's right the marriage of my parents was the second marriage for both of them.  And that lasted 57 years.  I'll venture in the basement to scan the photos when the weather is warmer.  Dad says he has a bunch in Vegas he wants to scan. I tried to talk him thru it over the phone. Lol. That wasn't too successful. Lol. It wasn't successful at all!!  Roflmao!!!  We did find an autographed Kiwanis magazine with my godfather on the cover. :)

When I first going to dialysis, I wore what I had.  Remember, Brian had to help me get dressed.  So I made do.  Eventually I got utilitarian clothes to wear. I needed to keep warm, but I had the chest catheter, so no turtlenecks. Preferably V-neck sweaters.  While waiting, I'd see a lady come in dressed to the nines, with her hair done. She was sharp. She even had a sparkly cane. And she was just so pleasant.  Well, I thought I didn't go to work looking like a bum. Why should I go to dialysis looking like a bum. I can be comfortable and still look nice. The transformation was gradual, but I always look presentable going to dialysis.  I look good enough to be able to go out after treatment.  Whoa, Rob Base and DJ Eazy Rock, "It Takes Two". Chair dancing.  It started slowly, but I started smiling and bouncing. Lol. 

I moved away from yoga pants and sweat suits, to jeans and sweaters. Then I started to apply my moisturizer.  Then I started applying tinted Burt's Bees.  Hey my lips were dry and I needed a little color. ;-)  Then I started carrying a purse. I'd get out of the car. Brian would get my walker, place my dialysis bag on the walker and then place my purse on my shoulder. I'd ordered the bag around my birthday, but didnt use it until late January. Then I got some fashionable (but comfortable) shoes. See, prior to the diagnosis and dialysis, I had Plantar Fasciitis. I had orthopedic shoes ( as cute as I could get, but they were still ugly ). I wasn't going to get athletic shoes.  Then I got my hair cut. It was much too long. I looked like Angela Davis. Lol. I hadn't had a haircut for about 5 months.  I started using a light fragrance. 

I started wearing brighter colors.  I started wearing jewelry. And you know what?  I started having some pep in my step. A smile in my style.  A nurse commented that when you look good, you feel good.  Some days I feel better than others, but I always put some effort in my looks before going out.  I've recently gone back to wearing makeup. Not everyday, but some days. And I like it. Lol. I am my mother's daughter. She believed in not just looking presentable, but good, even if it was a trip to the grocery store.  She'd admonish me to at least but some lipstick on. Or exclaim, "You're wearing that?" So here I am going to a medical procedure looking more than presentable. Lol. And yeah, it does make feel better. And the icing on the cake is when Brian winks and smiles and tells me I look good. ;-D

Well, my BP is out of control.  My feet are back down. <huge frown>. The nurse threatened me with the BP pill. I think not. I'll tell you about the last time I was given it.  Signing off with Meshell Ndegeocello, "Who Is He And What Is He To You". Can she play that bass or what!  Have a great weekend. Stay warm. :) 

The "It's Time For Another Trip. Where Should We Go?", edition.

iPad shuffled to Amel Larrieux, "Get Up".  "I see you down, when you gonna get up?"   More snow. Time to start planning a trip.  Well  let me back track here. Back to insurance.  We left off with me needing to call Medicare back in early February.  I'm set.  Good to go.  I won't miss a beat transferring.  Then I get some cryptic media message that there's been a settlement with the City and the retirees.  Something about more money going toward insurance for those of us under 65 and an extension until December 2014.  Whaaaaat?  I briefly thought that I'll wait it out.  I like my current health coverage.   I THINK Medicare with the supplemental Medicare Advantage plan will be sufficient and comparable to what I currently have. "Grapevyne", Brownstone. This is the perfect song.  And the vocals. I know I know.  I say the same thing every time this doing comes on. Lol. Still not tired of the song. Good thing it's on shuffle. :)

Anyway, with the news of the agreement I briefly thought about waiting it out. I decided not to. I can't afford to have any windows of no coverage waiting on the City and the Emergency Manager and the retirees to come to an agreement. Today, I am calling Medicare and will sign up for the Advantage Plan. It comes out to less than $20 / month. Hey, Medicare costs me $104 / month and with cost of the advantage, my insurance coverage is less than $125 / month. This is offset with my disability checks.  I never thought in my life, I'd have this conversation. To make me feel better, my financial advisor said I'm just getting my social security checks earlier. Well, ok.   Why do I have to pay premium?  Pat, didn't you say ESRD is automatically covered. Well yes it is, but I'm still under 65. Eh. 

Did you know that your Social security benefits are dependent on how much you made prior to applying?  We've established the ESRD automatically puts us in Medicare.   But Medicare pays 80% of the expenses.  If you fall below a certain income level, state Medicaid picks up the difference.  If you are over that income level you need to get a supplemental plan.  Here's the rub. If you haven't worked enough or have a job that didn't take out social security *cough* Detroit Police and Firefighters *cough*, you are shit out of luck.  I'm reading the stories of ESRD patients who can't get disability because of scattered or no work history.  I asked Brian what's wrong with this picture?  I get more because I made more. Now don't get me wrong, I appreciate the assistance, but I'm being rewarding for having.  Those who have less are being punished for having less. ;-(

"D.M.S.R.", Prince. "Dance. Music. Sex. Party". Party starter!!   So back to travel.  Medicare and Advantage will allow me travel in the US.  I think most clinics will accept it. Yes, I ran into clinics that did not accept my Blue Cross (what was up with that???).  However, Medicare won't pay for out of the country. ;-(.  Canada?  Carribean?  Dialysis at Sea Cruise?   No.  But I'll get more clarification.  

Ok. I was looking at places to go. Hawaii?  Puerto Rico?  Brian has never been to Manhattan.  That sounds like a good one. Maybe Boston.  We visited Boston on the great college visit road trip. We'd like to go back and see more. I guess I have plenty of options, but I still feel limited. We'll see. Sam and Dave, "Hold On, I'm Coming". Good old 60s soul. 

Signing off with Ramsay Lewis, "Sun Goddess". EWF vocals. :-)  Get your neighborhood kids to shovel the snow (again). Make sure you have salt or whatever you use to make your sidewalk passable. Lol. Anyone else seem to have stocked up on food for the rest of winter?  Feeling like the ant.  Who wants to be a grasshopper?   Lol.  Oh yeah, old guy is back at dialysis!!!  And my partner is back!!! Yay.

The "It's Monday Already?", edition.

iPad set to Beyoncé, "Love On Top". I like this song. I'm still not tired of her.  Nice bouncy song. I had a bunch of topics this weekend. Now on Monday morning I'm drawing a blank.  I guess I can tell you that processed foods and salt turn me off now. I admit I was a Taco Bell fan. Now we make them and we make them good.  We have a home made taco seasoning recipe.  Very little salt.  We alternate between ground beef and ground turkey. Condiments are shredded cheese, sour cream, and salsa. If we have leftover onions they'll get added and maybe some jalapeños. Simple. So simple. And delicious. "Looking For the Perfect a Beat", Afrika Bambaataa". I can name that song in 2 notes.  Lol.

We prepared finger foods to nibble on a Sunday. Our all day menu included baked chicken wings, lil smokies in hoisin and sriacha, fruit tray, veggie tray, cheese and sausage tray, and my indulgence, rotel and velveeta queso. Yes, it was too much. We ALWAYS over shoot. The wings were great- thanks Brian. The smokies were good, but too salty (imagine that /sarcasm).  I had a few cheese and crackers. The Triscuits were too salty. Yes, I should have bought the low/no salt version.  Sometimes I fight what's right.  I always get hand slapped. I didn't try the sausage, though.  I enjoyed the veggies-- without the dip!!!  That even surprised me. Lol. I couldn't get enough of the fruit. I could over indulge in the pineapple and strawberries. However I have to watch the melons.  They are high in fluid. Watermelon.  Get it?  Same with honeydews and cantaloupe. As always, all in moderation.  Finally I did have some chips and queso. Salty salty. Sigh. Limit the water.  All said, I still came in under a 3 kilogram weekend gain. And that's great!!).  Oh yeah, I did enjoy the Super Bowl blowout. :-)

My access area is itchy as hell.  My blood pressure is high this morning. When it's high I'm not allowed to recline. ;-(   The fluctuations can get real impressive.  (I forgot to take my BP med this morning...I did take the giant binder pills, though...sigh...that doesn't happen often).  The BP can be high sitting and when I stand up, it drops dramatically.    I wish my body could  just regulate.  That being said, again, all I have is failed kidneys.  People have diabetes, have had strokes, lupus, genetic kidney diseases. Some people have to be transported by ambulances. Some are amputees. Some take a lot of pain meds and seem to be perpetually in a fog.  Heart problems.  Shit just starts to happen by being on dialysis.   Missy Eliot with Ciara and Fat Man Scoop, "Lose Control",  now that makes your head bop!! "Cause Misdemeanor said so". :).    Ah well.  All I can take it a day at a time.  Today I'm good

Old dude is still in the hospital.  It's been a week.  My partner isn't here either. There are 2 new people, though. At least one has to be temporary. We'll see what happens. Signing off with Detroit's own, The Floaters, "Float On". And Detroiters are the only ones who can talk about Charles and Larry.  Anyone else from anywhere else gets checked. ;-D

Homemade Taco Seasoning -Allrecipes