Feeling Better 

At last I have some answers. I’ve been dealing with this for so long but the corner has finally been turned and now I can truly begin to heal, or so I surely hope I can!

My initial surgery was over a month ago and I’ve been so terribly ill since then. Many trips back and forth to the hospital as well as Pablo, the drain placed 26 days ago. Pablo was initially working well, but started malfunctioning. I began flushing him a bit more frequently. I continued having fevers and feeling terribly lightheaded and detached from the world. I tried my best to eat and not I felt the same.hing had flavor. I had 3 antibiotics.  My labs still looked the same and still showed the abscess was much smaller but remained. From a 7 cm to a 3 cm abscessed area which is an improvement for sure, but finding out that I can help this to go away faster?  What a golden opportunity to be proactive in my healthcare.

I have never in my life felt so sick.  I have never felt like I would never get my energy back or be able to once again go for a walk without passing out.  I have made one walk since my surgery.  It was a the only day I felt good.  I walked 4 houses up the street and back again.  It was to my dad’s house.  He didn’t answer the door either.  Hubs and I didn’t have our mobile phones either to give him a call, so we walked back down.  The next day, I felt just as terrible as I had previously and remained that way until yesterday.  I do listen and I do everything I’m told to do.  I’m a very good patient.  I know what I have to do and I do it.

After being in the nursing field for 29 years, I should know a thing or two about how to get better, but this has been the absolute lowest point of my existence.  Honestly, I was ready to seek healthcare elsewhere if it weren’t for Dr. Burke finally giving me the answers I was seeking on Thursday.  Hubs took me to my sinogram, where dye is placed into the drain and then x-rayed for drain placement and to see how much fluid is still present.  It’s really very cool.  What we were shown is that although my abscess is much smaller, the abscess is made up of pancreatic enzymes which is trying to eat my body instead of processing food because of where it has leaked to.  There is a small pathway which has formed which we need to help seal up.  We can do this by flushing and creating the proper pressure in there, a neutral pressure, allowing the nasty, thick drainage from the pancreas to drain.  If I gavage it with the saline 5 or 6 times a day, it will allow the thick drainage to flow more freely and therefore, it will be released more easily.

Guess what!  It’s been working great!  No more fevers, and I feel much improved.  I sure won’t be running any marathons.  In fact, I’ll have to work up to walking any great length again, but I’m getting there.  And I’m planning on more writing.  I’m able to focus a little more clearly already.  Just think, maybe, just maybe, I might get a little bit of my summer after all! Wouldn’t that just be awesome!  I know the Hubs, the kids and I would be so thrilled.  Thank you for all the prayers and good wishes.  Keep them coming.  You have no idea how much they mean to me.  Your kind thoughts are so wonderful.  They truly mean so much to me.  I can’t thank you enough for caring about little old me!

The Normal Life

If I close my eyes, I think of what a wonderful life I’ve been blessed with. You see, the last few months have been unusually difficult. I keep waiting for the storm clouds to disintegrate and the warm, blue, sunny skies of a normal life to take over. I’m beginning to think that day may never get here, or may never arrive at all.

Six months ago, I lost my beautiful, vibrant and brilliant best friend, my mom. She and I had differences from time to time, but what child doesn’t? We always worked them out.

Just after mom died, dad was misdiagnosed with cancer. Luckily for all of us, he had an abscess that looked like cancer. He healed well with antibiotics. When that was through, dad had a very important eye surgery. He is now able to see where he could not before surgery.

And then there is me. I have been sick since March, Easter week to be precise. I’m still sick, but hoping and praying that the end is near. I’m tired. I’m so tired of the pain. I’m tired of just feeling sort of alright. I am tired of my house and relying on others. I’m tired of new problems cropping up. I’m just so tired.

So when I close my eyes, I imagine myself free from pain, free from my house, usually swimming or running or playing like I did as a kid. I see myself able to focus on life for more than 5 minutes. I want to run outside and play with my kids. I want to take my dogs on a walk. I just want to relish my normal life. The same life I took for granted. I will never take it for granted again. That is a promise after this ordeal.

My home is a sanctuary to me, but now it’s become my prison. It’s become the place I wish I wasn’t. I’m trapped. I can’t enjoy my summer because of how I feel. I couldn’t go swimming, my favorite thing to do, because I have a drain in my belly.

The summer will be over and still won’t be back at the job I love because of this, or so I fear. Will I ever heal? I will, eventually. Right now, though, it’s so difficult. I’ll keep my eyes closed and keep dreaming, perhaps. I’ll dream of ordinary and how in love and miss ordinary.
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Saturday Morning Coffee

As We sit down to have our usual, be it coffee or tea this morning, I’ll tell you, it’s been another busy week. Why is this week unusually busy, you ask? Well, I overdid a few things and now I’m paying for them.

I’m supposed to increase my activity slowly, but apparently neither my children nor I know how, exactly to do “relax” very well. I have spent time in the ER with the boy, who is fine, had far day at the high school and various other activities. Yesterday morning I felt pretty darn good.

I wish I could say the same for now. I’ve been running a low grade temp since I got home, but last night it got up to 101 degrees. Don’t worry, the doctor knows and doesn’t want to be called until it reaches 101.5. I expected a slight elevation in my temp, but this is increasing and I’m starting to worry. My surgery was 2 weeks ago so by this time, I should be improving.

In other news, I’m killing ’em with kindness these days and let me tell you, it makes such a difference. I’ve always tried this approach to life but in my recent days, I look for kindness everywhere and spread seeds of kindness where ever I’m at. Kindness is a lifestyle, and I choose kindness. Give it a try. You can’t go wrong!

That’s it for now. Its time for another nap. I’ll see you next week. Have a wonderful weekend!

Love, Deirdre xx

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Grateful for Today

What a slow and gentle day. I was able to leave the prison of home again this morning for a while. How lovely to feel the sun on my cheeks! Soft and warm and glowing orb that brings me happiness!

Today’s adventures were thwarted briefly when my boy and I went out to the van. We recently, Wednesday, obtained some new to us furniture which was still in the van. The boy had to take what he could out to make room for passengers. I couldn’t help thanks to my 10 pound weight restriction post surgery. Let me tell you, that 9 year old kid is so strong! Thank God! He removed a ton of stuff!

Our first destination was picking up the 14 year old from school. Why? Because that’s where she was. What a beautiful, sunny morning. She was sending me texts about the bugs that were eating her alive. Poor kid. The boy and I were busy though. The boy was unloading all that stuff!

Next stop, hair salon for a bit of an update and trim. I had the two silly kids with me who amused themselves to no ends looking through magazines at all the hairstyles. All I heard from my chair was a great deal of laughter!

For being such good sports, I got them a McDonald’s breakfast for a treat. We drove through and I knew I was done with my gallivanting for the day. I miss those days of taking off in the morning and just doing things.

There were so many things I would have liked doing, doing but I knew I was pushing it. Sad, isn’t it? But I have to remember that my surgery was only 2 weeks ago today. I’m grateful for not being stuck in a hospital bed. I’m glad this isn’t permanent even when it feels like it. I’m getting there. I have to remember that everything takes time. I will heal in God’s tome, not my own.

As for now, my temp is up again. Stupid low grade temps. It’s the time of day and normal post op stuff, especially with no spleen. I’m exhausted so it’s time for another nap. I never thought I would say, I am tied of napping, but there it is! Have a joyous day, my friends! Love and peace to you all!

A Life Longed For

As the weeks rolled by, Kitty grew tired of just lying around.  She was so sick of this life.  She longed for the healthy days she used to have.  This pain, is this what her life was going to be like from now on?  She knew it wouldn’t be, or so they said, but after 3 longs months, each time she tried to do, or be, anything normal, the pain would come back 10 fold.  So did the low grade temp.  They said to watch out for the temps, but not to worry unless it was over 101.5. It never got that high.  It only got as high as to make her feel miserable.  100.8 degrees.  What the hell was with 100.8?

It had been nearly 2 weeks since the surgery.  She had longed for the surgery because she thought that would take the stupid pain away and she would start to feel better.  She did not anticipate feeling worse for this long.  She knew she would feel worse for a while though.  Whenever there was surgery, and this was a big one, there would be pain, but this pain was pretty much like the pain was before only all the time.  And now she had to contend with the temp and being so tired all the time.  When would she feel better?

Kitty had always been a bundle of energy.  She never slept a whole lot and that was fine.  Now, she slept all the time because being awake and just reading in her bed made her tired. If she was awake for more than 2 or 3 hours, it was nap time again.  When would it ever end?  She wanted desperately to be healthy again and to go back to work.  She longed to feel normal again.

She wasn’t allowed to even lift the 13 pound dog onto the bed.  Poor Pooch was over her weight restriction.  She had to call for help for that.  And Pooch had no clue, he just wanted up to sleep next to her.  The thought of her poor garden being ignored like it was drove her absolutely ballistic.  The thought of sitting outside, her usual favorite place, was out of the question.  It was simply too warm and she would quickly over heat.  So, stuck she was, in her bed or the recliner.  She couldn’t even sit for very long as she always did, “crisscross applesauce” or as she called it, Indian style.  She was miserable.

Where were the people that said they’d be there?  Her friends?  Well, her brother made it home from Europe early.  He was feeling guilty from missing her surgery.  He was so thrilled to see her when he got home.  Her dad came to see her once in the hospital and once since she’d been home.  Her friends next door had been there for her everyday, but now they were gone on vacation.  There were a few visitors in the hospital but since she’d been home, no one except her neighbors and her family.

She felt alone and forgotten.  Didn’t anyone realize how big this was? Didn’t anyone care? It was just a stupid pity party and she realized that too.  She would be fine.  She couldn’t expect more because everyone was busy.  At least her aunts from far away had thought of her.  She loved them so much.  She decided that she just really missed her mom in situations like this.  There was no one like one’s mom when you didn’t feel well and she no longer had her mom here.  She knew her mom was her angel though.

She grew stronger with time.  Each day got a little better.  Each week brought more strength and less tiredness.  By 6 weeks post op, Kitty was ready to face the world and the tears stopped flowing so freely.  Kitty could, at last, return to a normal life.  The life she had not had for so many months now.  The life she had longed for.

Coffee Time and Time to Share

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If we were having our coffee this weekend, you would have to come visit my home. I’m one week post-op after my very big surgery! If you would rather have tea, I have many varieties but my coffee Thomas coffee. Its the best!

We would catch up about our week. My week was spent partially in the hospital after my big surgery. I got home on Tuesday and have continued my recovery at home in my comfy bed. My family have been my nursing staff and have done a fairly good job. I’m proud of them.

My belly looks like train tracks from the surgery but it it healing well. My arms are both sporting all colors of the rainbow since I had IV problems. One of my IV’s infiltrated which means that the fluids meant to go into the being were going into the tissues around the IV site. I have a painful lump there which could have been much worse but I have been nursing it with warm compresses to get the fluid reabsorbed. It looks much better and feels better too.

So, now you know where I’ve been and why my posts have been so few and far between. I love to write more than anything but when you are on medication that alters your awareness and makes you so sleepy it’s very difficult to put word together into cohesive sentences much less write paragraphs!

I hope you have had An amazing week. I can’t wait to hear all about it! I’m sure next week will have me back to more of my old self again. I sure hope so, anyway. Until then, I’ll have a cup of Thomas coffee with creme brulee creamer and a blueberry muffin to get me by. What about you?  

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Tales Post-Op: Home at Last

I can’t tell you how glad I am to be home.  I did absolutely enjoy being pampered by the extraordinarily kind nurses at the hospital for 5 days, but there really is no place like home.  I love my soft, clean, fresh sheets.  I do, however, miss the bed that raises up and down.  The pain caused from that movement can be described as less than favorable at the moment.  If you don’t know, I had a large abdominal surgery last Friday so my tummy muscles are crying right now with activities I normally do without blinking. In this edition of Deirdre’s Daily Dose, I hope to amuse you with some antics of the “far away, far out” me induced by pain medication and other journeys over the last 5 days.  I wish it won’t bother you in any way, and that you can follow it, because, well, I’m stoned on Norco and tramadol at the moment and keeping my eyes open is hard enough!
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First of all, everything takes 1o times longer to accomplish thanks to my pain medication. For instance, just this minute, I started typing, zoned out, I think I may have even fallen asleep, and all I keep hearing in my head is an earlier conversation about naming a future dog Edgar.  So, in that “away” time from blogging, my finger fit the “d” and stayed there for many rows of, yes, you guessed it, “d’s”.  Grrrrr! I had to erase all of them.  What a pain! I keep falling asleep during this paragraph and dreaming.  Just little short dreams about the strangest things.  If I could just stay awake to write.  This would be such a funny post, I tell myself.

In regards to sleeping and the medications, let me tell you a couple of things.  First, the dreams are so weird.  Very colorful, but I always dream in color, these dreams are in strange, off the wall colors most of the time.  I can fall asleep in seconds and often do.  So, I may be talking to you, then the eyes close, I’ll still be talking to you but the dreaming starts while I’m talking to you.  I’m in two different places at the same time.  How bizarre!  My eyes are so happy when they are closed right now.  I know my body has lots of healing to do, but I simply can’t keep my eyes open for very long.  It’s not even that I’m not interested in what you’re saying.  I’m very interested, but my eyes and my body are so tired. And reading, well just forget it.  If it’s very short, I may get through it.  I may have to have someone read to me. What normally would take me a few minutes could literally take me all day.  Writing this is taking far more time than it ever would if I weren’t under the influence of medications.  And, this is what I love more than anything else.  Sharing my time with you.  Sharing my thoughts with you.

I do look and feel like a pin cushion presently.  I have gone through my surgery which was done laprascopically. Because of this, I don’t have one giant incision.  I am fortunate to have 2 poke holes, one small incision and a larger incision which is still relatively small.  but still, I’m marked for life, again.  Dad said, regarding my abdominal surgeries that I should have a zipper placed in my abdomen.  I teased him and said, “well I have one already.  Haven’t you seen it?  It’s all the rage in the frequently operated abdomens this summer?” This was my eighth abdominal surgery in the last 20 years.  Man, I’m one tough nut to crack.  Soon, they will run out of things to take out.  I’m like the patient in the game “Operation”.

As far as my IV’s and needle pokes, well, my veins have decided that they’d like a rest.  I was stabbed 12 times in 5 days for my IV’s thanks to my veins deciding to be sissies.  They just didn’t want to play nice with the needles. You see, as a nurse, I know how long the IV’s should last, and mine usually only last 24 hours.  I did have the last one for 48 hours before it infiltrated, but there were a few days I needed 2 IV’s as well.  That was not fun.  They should last 72 hours.  Next time, I’m suggesting a central line.  That’s it.  My arms are various shades of black, blue, purple, yellow and green from the various bruising.  Fun times.  Oh Yeah!

Now, let us talk about fluid.  surgeons love to make sure you are overfilled with fluids.  I am no exception.  That wasn’t a problem with a catheter to take care of the urine I was producing, but Day 2, my friend, the cath, went bye bye. Up and down, up and down. Painfully I made that trek while the fluids ran in liter after liter through my veins.  I even started getting puffy little feet and hands.  I was looking like a puffy little marshmallow with those excessive fluids.  Love me them lactacted ringers! Eventually, they were turned off and my puffiness started to decline and is still declining.  I still weigh more than I did entering into my surgery though.  That I’m not a big fan of, but it will go.  Eventually.

I’m now up and about more that I was, when I’m not falling asleep at a moment’s notice. I’m starting to feel better, but I’m reminded with pain when it’s time to take my little friends, tramadol and norco.  I’ve got a regiment going on and hope it will be just a short term one.  I hate the feeling of loopiness in my brain.  My kids laugh at the way I speak after the norco.  I just want to sleep  Ah, there’s the twinge again.  Time for my date with T and N.  I’ll be off for now.  Wouldn’t want to fall asleep on you again and have another odd dream to attempt to tell you about!

Ta-Ta for now!

Deleriously Dreaming Deirdre! xo

Carpe Diem! Well, I’ll Be Sleeping

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While you all are working away today, I’ll be sleeping and drugged. No worries, I promise it’s totally fine and within the law. I’ll be under anesthesia then drugged for pain relief! Woo-hoo! Go me, for my strange anatomical anomalies!

Yes, for those who have been keeping up on my posts and my pancreas, the day is here. It’s surgery day at last! Yippee-kai-yay! I am, at last, going to have the great big surgery to relieve the pain from my nearly 4 cm pancreatic cyst.

With the removal of said cyst, they must remove half of the pancreas and all of my spleen as well. This is my biggest abdominal surgery to date. It is also the most complex which will land me in the hospital for 3-7 days depending on how they perform the surgery. Can I get a hoorah!

I’ve had all of the emotions this week that one would expect going into such a large and complex surgery. I’ve been mostly peaceful but have also experienced some grieving emotions as well. Why? Well, although I know I will, or should live a normal and healthy life afterwards, I will be more prone to infection due to lack of my spleen, and it’s such a big surgery. It’s scary going under the knife once again. And hey, I am losing body bits. They aren’t exactly the bits I’d care to lose, either, like fat!

I’ve been waiting patiently and not so patiently to have this taken care of, yet now, it’s here. My Hubs, and greatest supporter, will have to continue to care for me but eventually I will be better. I look forward to having the energy and wherewithal to function like a normal human again! I’m sure the Fam would like that too!

So here I am, waiting and awake while I should be sleeping in my bed, but sleep won’t come just yet. This will be my 8th abdominal surgery. They need to simply pop in some zippers instead of seeing me shut! Oh well, carry on surgeons. Carry on! And out with the ickiness!

Blessings of Purpose

I wish I could tell you I was in a great place right now.  I wish I could say that I was in my usual happy place, but I just really can’t get there tonight.  I’m preparing for my surgery tomorrow morning.  Tomorrow is the day I will have part of my pancreas and all of my spleen removed thanks to my nemesis, the pancreatic cyst with atypical cells.  Bloody stupid cyst.

My husband, being the fabulous man that he is, is trying his best to put the smile back on my face.  He’s doing a good job, but in the back of my mind, I am anticipating the surgery.  How do you really get something that big out of your head? Well, the answer is, you don’t.

My husband’s purpose tonight and always, seems to be to take my mind off something or another.  Tonight, however, it is all about the surgery.  What is he doing? He and I are watching and listening to stand up comics.  The good ones!  You know the ones that actually can tell a joke without the use of foul language and crassness? Right now, it’s Ellen DeGeneres.  I adore Ellen.  She is so awesome.  Her topic for this one is procrastination.  Hilarious and not one bit of foul language.  My 9 year old could watch it.

What is the purpose of all this?  Don’t we ask ourselves that one all the time!  For me, my purpose is to keep calm and to get ready.  For Hubs, it’s to keep me calm and happy while helping me get everything ready.  For the kids?  Well, their purpose is to stay happy and carry on.   We all have a purpose in this world.  Right now, this is my purpose and my family’s purpose.

 

T Minus 2 days

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And thus we find ourselves here. The hospital called twice, once to pre-register and once to go over allergies and medications. That is fine with me, however, I know I’ll have to go over it all again on Friday morning. Yippee! Oh what fun!

I am no stranger to surgeries, especially abdominal surgeries. This time is different though. This time is a really big surgery. I admit I’m scared, but I just want it to be over. I was struck by something during the pre-registration call this morning. They asked me to pay my $350 co-pay today. Since when did this start occurring? Isn’t it bad enough that I have a family to support and I’ll have no income to support them with? Now the hospital, which used to take payments, wants that much up front? Seriously? I’m struggling here to understand the efficacy of all this. What happens to those who don’t have it? My cyst is pre-cancerous. This is necessary. I need to get this out of my body. Is this what health care has come to?

I struggle to understand how hospitals expect me to rate them highly when they want my copay right now. Isn’t this supposed to be about patient care? How did this happen? I’ll tell you how. It happened when the government decided to get involved. I’ve been a registered nurse for 20 years and it’s a recent occurrence that hospitals have been run so far into the red that they have to make things this tough for patients. What if I tell them I won’t be able to pay my other bills if I pay them for a surgery I need? Do you think they really give a hoot? The answer is a resounding no. Hospitals, like every other business, have been forced to think about the almighty bottom line more and more and less about the happiness of their patients.

You will get loads of surveys in the mail after doctor’s visits and hospital stays. That’s administration for you. They go by numbers. How did our employees do on the surveys? And that’s all we employees are, a number. Luckily, for those we work with, we are much more than that number. We are human. We matter more than that number, but to those above us all, just a number on a survey.

The same is true all over healthcare which is changing the way healthcare is delivered. Its everywhere, not just in the hospital I’ll be at for my surgery. Everywhere. Too bad the people taking care of you and me aren’t allowed just to do a great job, that which they were called to do, without having government and administration breathing out orders as to how we do what we do. It even includes how long doctors are supposed to take for patients. Yep, you read that correctly. Don’t you like having a time restraint on how important you are! And now, we have to pay for our stay like a damn hotel stay! I guarantee, it’s no Ritz Carlton for my stay! Why should I have to pay first?

Thoughtfully perturbed in Illinois!