Sunday, April 17, 2016

Take it easy...

Take it easy, take it easy
Don't let the sound of your own wheels drive you crazy...

My grandma died on Tuesday night.  I was able to hold her hand and say goodbye.  But life went on the very next day as though nothing had happened for the rest of the world.  The day before, I had Keith take Keira to the doctor because she had been having stomach pain for 3 days. (Don't worry, she's fine.). Thursday morning, we were getting ready for school/work, and I saw that our fish had died.  The twins brought Benny home from school a few years ago. They had Keith bury him in the yard, and hope to have him carve a memorial cross for their beloved betta fish. Keith is thrilled. ;) Work was extremely stressful this week. I barely had time to complete important projects, as I ran from meeting to meeting (or drove 2 hours one way for a meeting at another school).  And Friday, I celebrated 6 months with my new little kidney.

This week was the busiest, craziest one we've had in quite awhile.  That's ok, though, I know how to roll with the punches and go right along with life. Even when all those around me have no idea what really goes on in my head on most days.  Or the fact that my comfort song this week was The Eagles, Take It Easy.  Sure the song *seems* like it's all about someone getting it on with his women, but certain lyrics resonate with me.

I didn't get any of the bathrooms cleaned this weekend.  My kitchen floor is unswept and someone stepped on a Pringle so there are a few crumbs under the table.  And I can't tell, but there is a squirrel in my backyard that is either dying or getting ready to give birth (hoping it's neither).  But yesterday after getting the kids' haircuts, they played outside on the first real spring day we've had this year.  They had pasta for supper while having movie night.  Today, I took them to see Ice Age 4 for free at the local theater while Keith went on some sort of gravelly road bike ride.  After we enjoyed the movie, we picked up lunch for ourselves and my uncle and headed to visit him for awhile.  After some downtime at home, we packed up again for the library (we may have had some overdue books...such is life) and surprise ice cream cones.  Why? Because I wanted to.  Supper was pizza and Scooby Doo while we wait for Keith to get home before bed.

We may lose and we may win
But we will never be here again...

Lyrics play through my head and I think how oftentimes you blink and don't notice what's going on.  Or you are so focused on the Pringle crumbs that you forget to play with your kids.  I can't change the fact that we won't always have such carefree weekends or even simple hours to ourselves, but I can make sure to take some deep breaths and enjoy life.

Oh we got it easy
We oughta take it easy...

Tuesday, January 19, 2016

I sit all day at a desk...

Sometimes when I talk about how stressed I feel, I am met with this response: But all you do is sit at a desk all day. How can you be tired?

Apparently mentally tired is not a thing.

By the time I get to work, I'm tired. Due to my anemia, it takes a lot out of me to try to hurry in the morning, deal with the kids who always need me right when I am walking out the door, and then when I finally do get to work, it's a long (COLD) walk from the parking lot.

8:00 - Computer is on, I'm logged in.
8:02 - First question of the day from someone in the doorway. I haven't even had time to check my voicemails or emails.
8:06 - Attempt to check email, read 2, start to respond to one...
8:07 - Co-worker comes in with a question and some paper to look at
8:50, I have been trying for 40 minutes to finish that email I started, as well as make myself a cup of coffee to warm up since my office is freezing.
I have to hurry for the coffee since I need to take my pills at 9 a.m.
Try to go to the bathroom, but my boss' secretary asks a question, then my boss walks over with more.
9:30 - 4 emails responded to, answered a student phone call, talked to a few counselors with questions... Stare at the coffee which has become cold since I barely sipped it.
10:00 - Finally begin to review some students who have applied for graduation. We are weeks behind due to me being out, the holiday break, and the chaos of awarding degrees and certificates in January.  
10:15 - I've printed 4 audits, but the printer is out of paper. So am I, so down the hall to find some.
10:20 - Paper is ready , the rest of the audits print
10:23 - Boss sends three emails, need to respond to two. Takes time to find the answers, craft responses, make sure I've included all the right people...
10:46 - Intent forms stare at me with no progress made
11:07 - Phone rings. Student has a question with no easy answer. Have to research while student is discussing (complaining) about things.
11:14 - I finally finish reviewing a student! It's only taken an hour and 15 minutes.  I'm on a roll. I complete two more before I realize I didn't check my voicemail
11:30 - Listen to 5 voicemails, call back a counselor, answer a quick and easy question. Have to check with my co-worker if she has the substitution form for another one of the calls, while an IM pops up - does this course transfer in as A&P? There is no cadaver. (There always has to be a cadaver. They know this, yet they ask me every.single.time just in case something has changed since Friday.)
12:00 - Lunch time! Ha, just kidding. Still on the phone with one of the students I had to call back while simultaneously emailing my boss to see about setting up a meeting with one of the 4 year schools we have an articulation agreement with
12:15 - Finally lunch. 30 minutes to now catch up my "home/kids" to do list. So it's not really a break.
12:45 - Lunch is over, open office door (I'm actually shocked no one came knocking while I was on lunch, however I did have to answer an instant message that popped up 7 minutes into my lunch.)
12:50 - I begin to review another student, but now I need to work on some graduation ceremony items.
1:00 - A question about an event comes up, need to respond, but first find out if everything is set on our end.
1:16 - IM my favorite marketing person about a different event I need to host in 2 weeks - are the fliers ready? Crap! I forgot about fliers for the other event - stop what I am doing to complete paperwork for that, and give to boss for approval.
1:31 - That 4th Intent to graduate form looms at me on the side of my desk where it has been sitting for what seems like ever. But a co-worker comes in to discuss what else? The graduation ceremony. It's 4 months away but will consume my work life until then.
1:52 - I try to sneak down the hall to refill my water cup and run to the bathroom (as fast as someone with a nerve damaged leg can "run") when I'm stopped by someone telling me my mailbox is full.  Someone shoved a bunch of pamphlets in there, which need to be distributed throughout the student center.  
2:05 - Done with the pamphlets.
2:07 - Breath.
2:07:30 - Hi Sarah, Can I bother you for a sec? (While they say this, they are already walking in and sitting down at my desk.)
2:10 - I have been listening to this person explain to me why a student wants a call back. The student is angry for a variety of reasons, most of which she feels are my fault. I've never spoken to her in my life.
2:12 - I prepare myself for the phone call I am about to make.
2:35 - I finally finish speaking to the no-longer angry and frustrated student. She thanks me for my time and means it. I smile because I really do love my job.
2:40 - Find her evaluation request form and begin to evaluate her transcripts. 
2:57 - Interrupted again. (Big shock.)
3:16 - Have to pull out the FAQs for graduation to update based on some new changes. Make many changes. Have 5 questions. Try to schedule a room for our cap/gown pick-up event. Send email to boss with questions and FAQ for review.
3:56 - Remember to update one of the counselors about the student I had a 25 minute conversation with earlier in the afternoon.
4:00 - Meet with co-worker about graduation to go over some pressing items I have to take care of.
4:17 - Counselor comes in. He has a student with foreign credit who doesn't know why we didn't accept all of it. She has forgotten about our 35 minute conversation we had last Wednesday where I explained why.  I go to see her, re-explain in a cliff notes version so I can leave work on time.
4:35 - Leave 5 minutes late.

But no, I'm not tired after that day.  And that's certainly not wine in my glass.. 

Saturday, January 9, 2016

Book Review: Bound to Die: A Cozy Mystery

Title: Bound to Die: A Cozy Mystery
Author: Mak K. Han

This was a fun cozy mystery, in which is I hope there will be many more! The first chapter set the tone for the book - it had humor and just a little bit of paranormal mystery. However, most the the real mystery centers around the killing of a grumpy man in Strawberry Shores. The main character, Laura, has a cool psychic ability. She and her two friends, Alex and Emily, are drawn into solving the case, yet the killer knows they are on to him/her. There was just the right amount of mystery, romance, and danger in this cozy mystery. I recommend this book for anyone, including YA readers.

*I received a copy of this book from the author in exchange for an honest review.

Wednesday, January 6, 2016

Refresh 2016

January. The time of new beginnings. New starts. The dreaded resolutions that everyone proclaims will change their lives in the new year, yet many fail to hold onto through the very first month.

I don't make resolutions. Strike that, I did make one for the kids. "What's a new year revolution?" one child asked. "It's a positive change you make at the start of the new year. And your reSolution is to fold your own laundry and put it away."

This worked for two days. ;)

Let's be honest, 2015 was a stressful year for me. It started out great - we headed to Disney with my family for a week of fun, mostly sun, and great memories. But mere weeks later, I found myself in kidney failure from a hereditary disease that normally does not worsen. By May, I was officially on the national transplant list. By the grace of God, I didn't have the normal 5 year wait that most people have when waiting for a kidney. On October 15, just months after being listed, I was given a second change. A new kidney that was a 100% antibody match for me. This greatly improves the chances of my body not rejecting the new kidney. Next week, a routine 3 month biopsy will check for any sort of rejection. Fingers crossed that all is well.

Rather than make a resolution or two that I may or may not keep, I chose to renew myself in this new year. Shortly after my diagnosis, I had Reiki done. The Reiki healer told me that I need to do what I love because it appears I enjoy life anymore. Her words rang through. As the children grew older, and my life got busier, what I loved to do fell by the wayside. I barely read, wrote, or crafted. I lost my creativity, replacing it with being consumed with others - my family, their activities, work, school commitments, etc. I have piles of yarn that yearn to be knitted, scrapbooks with empty pages, project upon project that died in my head because I never turn them into reality.  Shelves (and a full kindle) of books to be read. And stories that flutter in my mind, only to gently float away because I never put pen to paper. 

What do I do these days that I love? I spend time with my kids and husband. But now I am back to work, and school is in session again. Keith has upped his training.  The busyness is back in our lives. Yet how do we not lose ourselves in it again? 

It's taking time.  Being present. Awakening 10 minutes earlier that I used to so there is some quiet time for me in the morning. Praying more. Facebooking less. It's allowing myself to be a work in progress - so if I fail one day, I know that I will wake the next day ready to start again. It's stepping back, taking a breath or ten, learning to meditate. To block out time to do yoga and exercise, something I haven't been able to do for quite some time. Not putting certain things off, yet only doing what is necessary.

Do you know I like to make my bed in the morning? Coming home after a long day of work and life, it's peaceful to walk into a bedroom that is organized.  So I try to do it everyday because it makes me happy. (It would also make me happy for our living room and kitchen to be less cluttered, yet it's hard to get the other four people in the house to agree on that one). 

That's what this new year is going to be about. Making me happy. Not over-committing. Doing good things for my body, mind and soul. 


Monday, November 2, 2015

After the Transplant - Part 2

The surgery began around 2:25 and lasted until 6:45.  They woke me up and told me the time was 7:15, so that was the point that I was in the recovery room.  After monitoring my vitals for some time, I was able to be taken back to my room.  There was little pain at that point since I was pretty numb, but my arms hurt from the various IVs I had in them. I had a total of 3 in me, and had had the initial one replaced before surgery.  That one had hurt the most.  My arm was pretty tore up for about two weeks after the surgery.  Other than that, I had 36 staples in my abdomen and a JP drain in my side for fluid in me to drain out.

The thing about a kidney transplant is that they don't actually remove either of my bad kidneys.  The new kidney is actually placed in my abdomen, and hooked up to an artery in my groin that comes from the leg (Or something like that) technically at this time I have three kidneys.  One that works great, and two that are craptastic.  Eventually they will shrivel up and do nothing.  The only thing that currently protects my new kidney is my stomach fat.  Which doesn't give me anxiety at all about being hit in the stomach.  Although the only restrictions after 6 weeks is that I can't play soccer, football, or pro-sports.  Which will be no problem at all for this girl.

Thursday night was uneventful, Keith stayed the night at the hospital and around 8:30 or so, my parents headed home.  I began my first immunosuppresent medication that night (not counting the large dose of steroids that I was given on the way to surgery to prepare my body for the foreign organ being placed in it.  I received 500 mg of prednisone presurgery, 250 mg on Friday, and 125 mg on Saturday before I went home.  I'm currently on the 5 mg pill that I was on before surgery, and can hopefully be weaned off of them totally in the next few weeks to months. Yay!)

Actually the rest of my stay was pretty uneventful, except for the constant nausea we realized was from the pain med I was on.  So they switched it to a pill - which lessened the nausea some, but I still couldn't eat until I changed to plain tylenol on Sunday after the surgery.  Pro - no more nausea. Con - doesn't completely help with pain.  I also had high blood sugar from the steroids, so I had to get a shot of insulin on Friday night.  Thankfully that issue seems to have resolved itself, however, I do need to watch my sugars for awhile.  Sadly I have other food restictions - no delis or buffets where food sits out in the open and are more susceptible to germs.  I also have to avoid large crowds and germy people (aka the kids' school) for a few weeks as my body adjusts to the immunosuppresents.  I'm currently on 8 medications, for a total of 12 pills and one liquid antibiotic in the morning, and 8 pills in the evening.  Some will only last for a few months to a year, and others I will be on forever.  The liquid is in place of a pill (bacctrum) which I am allergic to.  It tastes awful and costs hundreds of dollars pre-insurance, but thankfully I only have to take it for 12 months.  

On Wednesday I will finally have my staples and JP drain removed.  I still go for labs three times a week, but after next week, I get to switch to twice a week.  My hemoglobin is really low, so I tire easily, and I had nerve damage from the surgery in my right thigh, so it's numb. That would be fine, but as the nerves are starting to wake up, I am pretty much in constant nerve pain.  

I don't leave the house except for labs and doctors' appointments, but last Friday on our 11th wedding anniversary, Keith was able to get off work a little early and we snuck away to the movies.  You have no idea how great that felt to get out of the house for a non-medical reason!  Walking is getting easier and I can walk without assistance, even with the numb leg.  

I feel very blessed to have been given this kidney, and I pray for the family of the donor.

Saturday, October 24, 2015

After the Transplant: Post 1

Was it just last week that I posted I was on alert for a kidney? Seems like months ago at this point.  The night after I was put on alert, I still wondered if I would get a call.  I received another call in the afternoon stating that I was still in the running.  There was one person ahead of me, and he/she was a multi-organ recepient, and that took presedence over me.  The other two times I had received the alert call, I felt sick to my stomach. I prayed that it wasn't the time.  I wasn't too concerned about being called back.  This time, I was strangely calm.  I didn't go crazy trying to clean the house or get things done, rather I played Uno with the kids. We all laid in my bed at bedtime, reciting prayers and just being together.  Keith and I watched some DVR.  At 9:30 p.m. on Wednesday, October 14, the phone rang.  It was the nurse coordinator, stating that the kidney was mine, and that I needed to be into Chicago by midnight.  I was already packed, so I took a quick shower while we waited for my mother in law to come and be with the kids.  The hardest part was saying a silent goodbye to my children.  They knew that I could leave in the night.

Keith, my mom and I drove into the city.  There wasn't much traffic, so it didn't take the usual hour and a half as it does during the day.  We checked into the ER, and waited to be taken upstairs to 11 East, the transplant floor.  My room was soon ready and we got in. They did the usual vitals check, then stuck me with an IV. Not well I might add - it was placed in my elbow area and was painful, (So much so they had to re do it the next day.) My left arm is still torn up from three different IVs as I have small veins.  My mom and Keith fell asleep, but my arm pain and the nervousness kept me up most of the night.  I couldn't eat or drink, which really sucked, especially when I found out that surgery would not be until 2 pm the next day.

My dad drove in the next morning after getting my niece and nephew off to school (my sister just started her new job  and needed to be in early that day.  We basically just hung out while we waited for them to come take me.

Around 1:30/2 pm, they wheeled me to the pre-op room. The nurse was nice enough to let my parents and Keith come in with us (usually it's just 2 people allowed in).  After another 30 minutes or so, after speaking with the anesthesiologist and a doctor or two, it was time.  My family said our "see you laters" (family superstition) and I went into the operating room.  It was super bright with probably 15 people in there at the time.  There was someone sitting at a table, with his back to me, working on something. I wondered if it was the kidney? I didn't ask though.

To be continued...

Wednesday, October 14, 2015

Waiting for a call...

About this time last year, I wrote this post: Enjoy the little things....  I quote one of my favorite songs - Simple Man by Lynyrd Skynyrd.  I talk about the time I drove home from my grandpa's funeral, all alone, and this song came on the radio. 

But from time to time, this song will magically appear on the radio when I need it most. Like today while I was driving. I debated bringing this up as I don't want to hear people say - "I hope it works out for you" or "I'm sorry" when/if it doesn't. I will begin this by saying, there is no right thing to say to me when I share this news.  Perhaps just a like on my FB post will be enough to know someone read it.

But here's the thing.... I am #2 in line for a cadaver kidney today. I found out last night. This is the third call I've received since the end of August putting me on alert. (Because it doesn't really happen like it does on t.v.). First they call and say, hey we have a kidney, but you aren't first in line. So I wait and wait and wait (wondering what I can get marked off the to do list in record time yet still trying to spend time with the kids - does a family laundry folding session count? Because they need clean socks!) Then they call back to say, sorry it went to someone else. And I breathe a sigh of relief that I have more time.

I debated sharing because I don't want to hear, oh I'm so sorry, or it will happen, etc. Not because I don't want support, but because I am truly ok with it going to someone else. Because that someone is in a greater need than me. However, people can't seem to understand that and tend to make me feel guilty for not wanting it more for myself than I do for the person who actually received the kidney.

I sit here, waiting for a call that will only come if the person who is #1 on the list gets prepped for the surgery and right before placing multiple organs into him/her, the surgeon discovers that one of them is not suitable for transplant. They will cancel that surgery, that person will wake up only to discover he/she did not get the organs. And a kidney will be flown to Chicago for me.

Everyone is so excited for this cadaver kidney to come to me - but what about the family of the one who lost his/her life? Or the person ahead of me on this list, who is probably in greater need of this than me. There are many reasons why I wanted to go the living donor route - and those are two big ones for me. 

My surgery will only happen when the time is right. That may not be today, and I am ok with that.