My world in 3 feet or less

A little while ago I posted something about losing body freedom when you are sick. The worst of it is the 3 foot circumference that make up your entire world. If it is within that space, great. If it is not, it is lost to you until someone helps you.

That’s a tough pill to swallow if you are an independent woman. Through the pain and haze of surgery, you are helpless. Totally helpless. You whole existence depends upon people who will feed you, water you, change you, help you go to the bathrrom. How degrading.

After a few days you feel a little better, but you are still a prisoner in your own bed. You cannot bend, you cannot move your leg, you flop around like a fish in a drained pond. If you are cold, you stay cold. If you are hot, you stay hot. If you drop your TV remote, you watch the same channel. If you lose your bed remote, you stay in one position. And if you lose your call button, you stay this way for all eternity.

Nursing homes/rehab facilities are great. You go there to get better. And you do. However most of them are understaffed, and if you need immediate attention, you must learn patience. Sometimes it’s hard to do, if it’s an “emergency”. Other times you can wait for a half hour, no big deal. But being left on a commode for a half hour is not fun, nor is waiting for blanket or whatever. So you learn to write lists, and when you do see a nurse, you get all your needs taken care of at once. Nothing worse than pushing that call button right away again!

I am now a bit past the 3 foot phase. I am able, with help, to get out of bed and into a wheelchair. Feels like heaven. Still have a long way to go. But I’m getting there.

BUT. If this infection doesn’t go away with one round, and I have to do this all over again, all bets are off!

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Don’t take your body freedom for granted – Take Two

Remembering when I posted this a few weeks back, I knew never to take things for granted again.  Boy I sure wish I could go back in time……truly worse than I imagined.  But it is what it is…..

Body freedom. What do I mean by that?

In less than two weeks, I will again be hooked up to machines, IV’s, walkers, canes etc. This time for the long haul. This will be a six month process, start to finish.

I remember last year, when I was FINALLY able to walk without my walker after about 4 months. I could get up and go to the bathroom! I could carry coffee without spilling! I felt so free!

Then when my leg wounds finally healed after months of months of surgeries, and bleed outs and changing bandages constantly, wrapping leg in waterproof plastic/bandages too take a shower. I felt so free!

Then my PICC line finally went, and no more 3x daily infusions with all the Vanco balls and flushing lines and blood tests and wrapping the arm in waterproof plastic/bandages that still managed to get wet because how do you bandage your own upper arm properly? Finally. I felt so free!

I have been grateful EVERY DAY since then for those small freedoms. It may not sound like much, but when you are tethered like that for months and months, it is so wonderful. Simply wonderful.

Now, I have another six months of this same stuff ahead of me. Only worse.

Only worse. God help me. I may lose my mind this time, along with my body.

I can’t wait to truly be body free!

Hi, my name is Jan, and I’m an Orphan

orphan

How many of you out there are orphans?  Obviously the older we get, it is inevitable.  People don’t live forever.

I lost my father when I was in my 20’s.  My father was only 54, and died of lung cancer.  That was back in the day when you could still smoke in hospitals, believe it or not.  I remember thinking that he was going to burn himself up in bed before the cancer would get him.  He continued to smoke, pretty much until the day he died.  We all did.  We would all sit around in his hospital room, smoking.  He died a horrible death, and we dealt with it by smoking more.  How ironic.  We all needed a good kick in the head.

My mom died when I was in my late 40’s.  She was unhealthy most of her life, and ended up with Alzheimer’s.  The last year or so of her life she never got out of her hospital bed.  Not once.  It was very sad to watch your mom just fade away, on feeding tubes etc.  I will always be grateful that she remembered my name until the end.

So, there I was.  An orphan.  An adult orphan.  I always only thought of orphans as young kids.  But when you think about it, there are probably many more adult orphans. Because as I’ve already noted, people don’t live forever.

Also, as the circle of life goes round and round, we end up taking care of our parents in the end, like they were the babies.  Hey, it’s only fair, right?

Most adults don’t want to end up that way.  I sure don’t.  I envy the people who lead a nice long productive life and then just die in their sleep or quickly (hopefully) of a heart attack.  Unfortunately I watched both my parents die of a protracted illness.  Not fun.

I don’t really consider myself an orphan. I am lucky I had both parents until I was married.

 

Sweet dreams are made of these

dream

They say that dreams are windows to our soul.  That dreams are expressions of our deepest fears and desires.  Some say the soul leaves the body while dreaming.  Some say dreams allow fantasy, or predict the future.  Others say that dreams subconsciously continue your problems of the day into the night, and erase what it can’t fix, and dreams of ideas you can fix.   Dreams can run the gambit of emotions, the most common being anxiety, and negative emotions outweigh positive ones.

I know that most of my dreams involve chasing someone or something that is never caught.  My dreams usually start out with reuniting with something or someone that makes me very happy and to weep with joy.  But then roadblocks soon appear, that threaten to take it all away .Something or someone always gets in the way.  I am thwarted at every turn.  Mine are always melancholy, usually I will awake with great sadness and tears.  I think it is my subconscious trying to relive my life the way it should have been, not the way it was.  But something always spoil it.

I know when I was taking Chantix to quit smoking years ago, I experienced the best dreams of my life.  Vivid, colorful, like a 3D movie, that could be replayed over and over again.  I could wake up, and realize what a cool dream I was having, and go right to sleep and continue on.  Like replay and pause.  The next night, I could scroll through the list of movies like On Demand, and press play on whatever dream I wanted.  The Chantix took 2 days for me to quit smoking, but I kept taking it for the full month, just for the dreams!  Those were happy dreams, ones that I would like to keep repeating.

My melancholy dreams seem to repeat themselves instead.  And come on people, I have NEVER EVER in my life had more than a PG 13 dream!  I mean really!  That’s taking the good Catholic girl routine a LITTLE too far, lol.

What do YOU dream about?  Please tell me, I would like to know!

Mixed up Reality TV

TBL

Survivor

I was watching The Biggest Loser (TBL) last night.  And Survivor (S) tonight.  And I thought, hmmm…..maybe we should switch things up.

The people on TBL have a problem with eating too much.  The people on S have a problem with not getting enough to eat.

TBL has people on a strict diet, but they can fall off the wagon.  The people on S are on a strict diet, but they have no choice.  There is limited food for everyone.

TBL winner typically loses a shit load of weight over a fairly long period of time (12-18 weeks, depending upon who you talk to.  And those people are not losing mostly fat, they are on a starvation diet and exercise 6 hours a day).  The people on S all lose weight, and most are skinny to start with.  Ribs start showing, girls just seem to disappear right before our eyes!  It’s a quicker weight loss, a little over a month, but not as drastic.  Most contestants lose 10-20 pounds, and when you see them at the finale months after the show ended they still look pretty good.

What show is better?  TBL offers a trainer and a lot of support, but unrealistic goals and diet restrictions.  Contestants intentionally dehydrate themselves for weigh-ins and put themselves in danger.  Also, the “weekly weigh-ins” are typically not over a week’s time, but usually 10-14 days.  Just because the show is weekly, doesn’t mean the weigh-ins are!  Many behind the scenes manipulations are going on.

S on the other hand is more of a mind game, even though there are physical challenges.  Most people break down because of their minds, not their bodies.  The weight loss makes them look lean and mean.  Because they are not intentionally trying to lose weight, it is done more naturally.  They usually come into the game in good shape.  Haven’t seen a 400 pound S contestant yet.  Might be interesting to see how they would fare.  But a lot of the challenges involve holding your weight up, so the lighter folks have the advantage there.

Also, I think there is more crying on TBL.  Emotions come into play every day.  Most people are overweight due to issues/emotions they must overcome.  The people on S seem more steely strong mentally.  Physically too.

It might be fun to switch the games up for a week or two, and see how the contestants fare.  I think the people from TBL would have a much harder time being survivors, than the people on S would have on TBL.

What do you think?

Silent Support

support

I cannot begin to tell you all how many people have come up to me recently telling me how wonderful I look, how they have been following my journey on Facebook and my blog, and how much my courage in the face of adversity has impacted them.  They love my Positive Thoughts for the Day and say I am an inspiration.
Who, me?  Wow.  Well.  I do know that I had great positive relationships with all my nurses and therapists in the hospital, rehab, and home health care.  And my doctor just shakes his head time and time again and asks how I can keep smiling through all these ups and downs (most downs).  I guess having a chronic incurable disease (Crohn’s) has prepared me for the worst case scenarios in the past, and that is why I wasn’t too surprised to have all these issues and extra surgeries and PICC lines and infections and meds etc. with this hip replacement.  Been there, done that, alone most of the time.  This time I had the support of my family and friends, so many visitors, cards, phone calls etc., which really made the difference.  I would not have made it without them. Especially my little 3-year-old niece, who loved all the blood and guts aspect, and kept me laughing through it all.

Sometimes you don’t realize the impact you have on people, positive or negative.  That’s why I always try to have a smile on my face, and be friendly and courteous to people.  It just might make their day a little brighter.  So thank you, everyone, for your support, silent or otherwise.  It encourages me to keep on going, knowing that you are reading and rooting for me.  And it really makes my day when one of you comes up and hugs me and tells me that!

I am SO blessed….

The true meaning of friendship

 

happy people

I think my regular readers know that I have been going through a medical situation.  I had my right hip replaced on May 14th, and then it got infected and I was back in the hospital with more surgery etc. on May 31st.

It hasn’t been an easy ride.  At all.  Pretty bumpy as a matter of fact.  Irregular heart rate during surgery, skyrocketing blood sugar, vomiting for days, blood transfusion, blown out IV veins, NO veins, etc.  And that was just the first few days.  Now I am dealing with a bad infection that could jeopardize the future of my hip.  I had another surgery, another 4 day stay in hospital, PICC line (thank God), at home nursing care now and daily infusions.  Actually, today I did my own infusion, because insurance doesn’t pay for daily nurses.

When I came home from rehab back in May I thought I was over the worst and could walk pretty good and pain was minimal. I was ecstatic.  Now, I feel like I have regressed and am way, way back.  I have pretty significant pain, can’t walk without my walker, and am homebound. 😦  I still don’t know what my future holds for me and have to live day-to-day.

BUT.  There’s always a but.  In this case, a good but.  This whole situation has made me realize who my real friends are, and I have been become much closer to my family, especially my sister.  People have prayed, sent cards, visited, sent flowers, presents, and most of all have supported me in this ordeal.  I can actually FEEL the outpouring of love and prayers floating up to heaven.

When I was in the hospital this past weekend, I went to the Chapel on Saturday night during my nightly walk.  The hospital was pretty much empty.  Who wants to stay in a hospital on the weekend, besides this girl?  Anyway, the chapel was very peaceful and had a login book you could write requests/prayers to God in.  So I sat down and wrote 2 journal pages of thoughts to God.  I asked him for healing help and also thanked him for the new hip he gave me, and could I please keep it?  I told him I would take very care of it.  I ended my journaling with a plea for a Blackhawks win, and he gave me both Sat and Sun win, so I know he is listening to me.  The next day, Sunday, the Chaplain came to visit me in my room and said how much he enjoyed reading my entry.  He was a nice man and stayed to chat for a while.  I told him my fears and he helped calm me with thoughts of Jesus taking care of me.  So, thank you Jesus, for everything so far, and yet to come.

And thank you to all my friends and family, without all of you I wouldn’t be the person I am today, and I appreciate all the help that has been offered and given.  Love to you all.

 

 

 

Stuck in the middle

middle

Middle child.  Middle of a project.  Middle of the bed.  Middle of the pack.

Sometimes it seems like I am always stuck in the middle.  Especially the middle of the pack thing.  I’m looking for someone like me.  Not too young, not too old.  You know, middle of the pack.

I have many friends of the male variety.  Just not the right one.

One is too old and set in his ways.  Old fashioned.  Stubborn as a mule.  But gentlemanly and always sending cards and presents.  Lives 4 hours away.

One is too young and still searching for what he wants out of life.  Also stubborn as a mule.  Gentlemanly in some ways, but not very thoughtful in many ways.  Lives 4 miles away.

Both I consider friends.  Each one offers something different in their friendship.  One comes with history and the possibility of a future.  One comes with deep conversation and sharing of souls and secrets and probably a lifelong friendship.

One is not better or worse than the other.  Each has different strengths and weaknesses.  But, that old saying, the grass is always greener on the other side?  Damn they’re right.  At least, that’s what the mind thinks.

The mind can never choose one or the other and be satisfied.  The mind always searches for something better.  The mind does not want to settle for less than the best.

Just what is the best?  A best friend?  A best mate?  Hopefully both in one person?

If I could meld the two together, I could have a life long mate, and a best friend.  I thought I had it before, but I lost it.  I am jealous of those that find it, and keep it and nurture it.  I keep thinking, I can find it, I can do it again.  Then I think, naw, too much trouble, too much heartache involved.

Person.  Not dog or cat.  Person.  That is the scary part.  The dogs and cats don’t leave you willingly.  A person can, and does.  That’s the heartache part.  Persons make it personal.  So many people say they would rather have loved and lost, then never have loved at all.  I’m not so sure about that.  I won’t even get another dog because the loss is too great and tears me apart.  I don’t think I could stand to lose another person.

But I have to try.  I have many friends, very good friends, but we all need someone to love us and protect us and grow old with us.  We need to be someone’s Numero Uno.  The person we think of first thing in the morning, and last thing at night.  The person who makes us a better person.  The person who makes you laugh, cry, and most of all, makes you happy.

Now where the hell did that blind guy go?

Mirror, Mirror, on the Wall

mirror mirrorEvery morning we look in the mirror.  We brush our teeth, comb our hair, apply make-up etc., and then we twirl around hoping we look better.  Although, dare I say, a man could go through a whole day without ever checking a mirror, lol.

Me, I have a circus mirror at home.  When I look in it, I still feel young, tall, slim, attractive.  For whatever reason, I see the person I picture in my head, not the reality.

mirror funnyAhem.  Time has not been kind to me, to say the least.  I blame the bags under my eyes and wrinkles around them to crying and blubbering over ex-husbands.  Trust me, a divorce can age you overnight, imagine crying for a year!  Don’t do it, not worth it, it wreaks havoc on your face, mind and soul!  And if you don’t want upper lip wrinkles, throw those damn cigarettes away!  They ruin a lot more than your lungs!

Love the sun, or the tanning beds?  Welcome to skin cancer and leather lizard skin.  All those old wrinkled ladies you used to make fun on the beaches of Florida?  That is you if you don’t stop.  Please don’t make me look like Tan Mom!  (Planet of the Apes, anyone?)  Use self tanners or spray instead.

tan mom

Let face it, we all age.  We have not yet found the Fountain of Youth.  We can turn back the clock somewhat with proper health and eating habits.  And there’s always plastic surgery, lol.  As Dolly Parton would say, nothing wrong with a little nip/tuck.  Personally I don’t have the funds to do that, but I have had chemical peels, microdermasion etc. as maintenance, and apply sunscreen religiously.  Just wish I had back in the day, instead of baby oil!

Sometimes, no matter what you do, you must face reality.  And sometimes, that reality sucks.

mirror

FIRST, DO NO HARM

oath

Ah yes.  Do no harm.  The hypocritical hippocratic oath.  The oath basically means that a doctor shall do his best to do no harm to a patient.  That might mean not doing experimental surgery, or dangerous procedures, that he feels will do more harm than good.  (Nazi medical experiments anyone?)  The original oath states that they can’t do a Kevorkian, or perform an abortion.  It also includes language that they will share their money and knowledge freely with other doctors.

Hmmm.  Obviously the original oath has been heavily modified and modernized. I do think that the majority of doctors are moral and ethical.  However, our society has made them into robots with a 15 minute time limit per patient and a payment schedule decided by insurance companies.

Now, I’m not going to go off on a rant here about Obamacare or socialized medicine.  I just want to talk about what we should expect from our healthcare professionals.

I expect someone to listen to me, first and foremost.  I expect them to take my suggestions seriously.  I expect them to provide the best treatment plan for me, about me, and agreed up by me.  I expect full disclosure about what to expect from any medication, surgical procedure etc.  “This won’t hurt a bit” doesn’t fly with me.  Let me lay you down on the table and try it on you first.

Ultimately, we are responsible for our own health.  A doctor can’t keep track of every patient like he should, and follow-ups are YOUR responsibility in that case.   And listen up, cause this part is important…..if you don’t LIKE your doctor…..FIRE him.  They work for you.  Don’t be subjected to a doctor you feel is condescending or doesn’t listen to you.  There are certain doctors at my medical office that I do not care for.  And I make sure to avoid them like the plague.  They are just not my type.  Then I have my GI doctor, who I love with all my heart and soul, and I have literally put my life in his hands for over 20 years.  The funny thing is that we like to argue about treatment options, but we do it with love and respect for each other.  (I am always right of course!).

If you have a serious medical condition, take care of yourself.  Nobody else is gonna take care of it for you.  Align yourself with GOOD doctors that you like and respect.  Then you can have the best attitude possible and perhaps have a better outcome because of it.

Tell me about your experiences with your doctors.  I would love to hear them!