Count your blessings. Seriously.

thankfulI’ve been in kind of a funk lately, thanks to my hip.  It is SO hard to stay positive all the time, when you keep getting knocked down.  But that old adage?  That there is someone who is worse off than you?  It’s so true.

I know someone who had cancer, and went through a very rough year of treatment.  But she got through it.  She was so brave, so strong.  A real trooper.  We all breathed such a sigh of relief that she was on her way out the other side.  Her cancer was controlled.

But.  Always seems to be a but with cancer, right?  It came back.  With a vengeance.  In an even more difficult area to treat.  Hit her with a knock out punch, right out of the blue.  She had to make some very difficult treatment decisions, very fast.

But she did.  And if I know this woman, she will make it.  She has a long hard road in front of her, but she will persevere.

She made me feel ashamed of myself for my own self pity.  My problems pale in comparison to hers.  Yes, mine are bad.  But it’s not cancer.  It’s not life threatening.  At least not right now.  It can be eventually, but that would be my choice.

I’m not gonna lie, I did have a very bad year, actually year and a half, with this damn hip.  I have had 7 surgeries, 6 hospital stays, 2 ER visits, 3 nursing home stays that totaled 3 months.  Add in the hospital stays, and I’ve spent 4-5 months away from my home.  The worst was my 2 month stay, where I felt like I was in prison.  My free will was taken away from me.  I felt so helpless.  I could not leave, even if I wanted to.  I had all my choices taken away from me.  Even food, lol.  I had massive surgeries, horrible pain.

Luckily I came out the other side.  I breathed a HUGE sigh of relief, and was SO THANKFUL, GRATEFUL, that it was done.  I could walk.  I was attached to a bed, a wheelchair, a walker, a cane.  I was FREE.  I thanked God every day, and all the prayer warriors who prayed for me.

But.  Always a but with these things, right?  It came back.  Just like before.  Almost right away.  And just like before, I am going to have to walk the same path, again.  Against my will.  I SWORE after the last time I would NEVER do this again.  Of course at the time I never expected to have to face this again.

Monday I go back to the hospital, for yet another procedure, to find out what is growing in my hip this time.  If all the planets align right and God is with me, maybe it is just inflammation from something else, maybe the blood tests are wrong.  If God is with me maybe it will be a simple fix.  I do know something is wrong.  It has felt wrong since the beginning.  Although I will say that it seems to have gotten a bit better, but more likely, I have just adjusted to this new level of pain.  I have not been pain free for a year and a half.

Most likely I will have to start from scratch again.  I know the path ahead of me.  I do not want to walk that path again.  Neither does my friend.  Sometimes, we just gotta do it, no matter what.  Or I could choose to do nothing, and let nature take its course.  I only hope I have the courage to choose the right path.  I only hope I can be as strong as her.  I only hope I can be positive.  I only hope it will get better.  And STAY better.

Thank you, my friend, for having the courage to fight your battle, and giving me the incentive to fight my mine.  My prayers are with you.

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What is your worst nightmare?

sickPeople all have “worst case” scenarios running through their minds at times.  At least I do.  I’m so careful about things.  I try to be an optimist, but so many times, I am disappointed.

Like now.  My hip is infected.  Again.  That’s right folks.  Just like before.  Although this time I had 3 months infection free after the revision surgery.  Yay for me!  But now….

My worst nightmare has come true.

The sad thing is that I wasn’t surprised.

Prayers are greatly appreciated.  Again.

Thank you so much.  I have nothing more to say.

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!

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!

Goodbye and good riddance!

goodriddanceMost people love ringing in a new year.  A fresh start, new resolutions, a celebration of things to come!

I cannot wait for this year to end.  This past year has not been kind to my family.  A year ago my BIL died.  Then I had my hip replacement in May, which to this day is still infected and may at some point have to be removed.  Then my niece’s fiancée was killed in a horrific accident, leaving her little girl without a daddy.  Then my sister’s two beloved cats were eaten by coyotes.  Then my little great niece cut off her long beautiful hair down to the scalp, just in time for Christmas!  (which is no big deal compared to the other things).

My hip replacement has colored my world every day.  It was painful, it was expensive, and it is ongoing.  Don’t let the doctor’s fool you…..when you saw off your femur bone and then pound a stake into it, IT HURTS.  FOR A LONG TIME!  Those sadists at the hospital are poking you, prodding you, and making you walk all the time!  They love to see your pain, and tell you to work through it.  Yeah right, ok.  I did it, did everything they said, and went home from the rehab hospital with an infection that is still with me to this day as a reminder of a horrid experience.  Granted, this doesn’t happen to most people.  Very few people, in fact.  I am one of the lucky ones.

I was at my ortho doc on Wednesday.  We were talking about shots, and I asked him if it would hurt.  He said yes.  I asked him if it would make me cry.  He said “You are the bravest woman I know.  With everything you have been through this year, I have never seen you cry.  You have been through hell and back and keep on smiling.  All the nurses and therapists are amazed by you.  In all your hospital reports they make notations about your positive attitude and smiling face.  They wished all patients could be like you.  You had 4 surgeries and home health care nurses for months, and they all fought over who got to service you.  I think you made friends with every nurse and tech at Lake Forest Hospital!”

And you know what?  I did.  Why not?  I was stuck in the hospital a lot this summer, and those nurses and techs were my best friends.  They took wonderful care of me, and attended to my every need.  Trust me, you are totally helpless the first few days after surgery, and really need compassionate people!  They all were angels from heaven, and if a smile from me made their day better, I was happy to do it.  I felt my recovery would go better with a positive attitude, and it did.  The nurses treated me like I was special, and that made ME feel special!

Granted, I would like to never experience this kind of thing again, lol.  Luckily I had insurance, but wow did I get screwed!  I had the state of Illinois Pre-Existing insurance for the first 6 months until they went bankrupt and then forced me over to the federal insurance.  I had to start from scratch with deductibles and co-pays in the middle of the year.  All told, I paid approximately $20,000 for insurance this year.  I know my hospital bills were a lot more than that, and I was grateful to have the insurance, but geez.  That’s a lot of money for someone like me.

My sister and my niece are doing better, but it is still hard.  Luckily my great niece Brianna is very resilient and has taken the loss of her daddy in stride.  She has other male figures in her life who have stepped up, and she is a very loving child.  She is the best thing that has ever happened to our family!

The two cats are greatly missed, but Bri rescued a kitty and named him Lucky, and he has wormed his little way in our hearts and helped heal them.  He is quite naughty, and I’m sure Bri’s Elf on a Shelf has all kinds of naughty reports on him for Santa!

Thank goodness I don’t have an Elf on a Shelf, because my two cats are the naughtiest Christmas tree destroyers ever!  They have literally eaten the lighted Star off the top, and many strings of lights and ornaments.  It is their napping spot and climbing pole.  The top of the tree is now slanted, and they broke the stand too.

xmastree

Oh well, lol.  There’s always next year!  And next year will be better, I just know it.  My hip is better, I got to go to a family reunion wedding and see all my long distance relatives, my cats are fine, I have a warm house, a job of sorts, and family and dear friends.  I will try to stay on a positive path, and keep fighting the good fight!

Merry Christmas my friends, and I hope you all have the happiest of New Years!

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….

Ruby Red Slippers

ruby_red_slippers

I want a pair so bad. No, I NEED a pair so bad.  I want to slip into a dream one night and wake up in the merry old land of Oz.  Everything is so bright and vivid and happy there (at least in the last movie).  Except for the wicked witches.  Who really weren’t all that wicked at all, and, some might say, were driven to their wickedness.  But I digress.  I love the story of Oz!

I want to click my magic heels three times and be back home, but home either in the past or the future.  Not home in the present.  That is what I am trying to escape.

I have to be honest here.  I do not like my life in the present right now.  I try to stay so positive, but it is so hard.  (Yes I know there are other people out there worse off than me, but at this point I don’t care anymore, you try laying in a hospital bed for almost a month and hobble around, it’s all about me me me, I’m a selfie).  I want to fast forward to when I am completely healed and can walk like a normal person.  Or I want to rewind to the days of being young and healthy, and knowing what I know now, take better care of myself so I don’t end up how I am here in the present.

I want to go on an adventure, like Dorothy, and then end up back home safe and sound , and appreciate my life all the more.  I want a Wizard to give me a new leg.  I want three friends like the Lion, Tin Man and Scarecrow to help me on my way, because we are all flawed and need help.  We help each other.

So Glenda, or Glinda, whatever, please help me get through this with a touch of your magic wand.  Spread glitter all over me so I shine bright like a diamond.  Transfer some of your goodness into my heart.  Oh, and I wouldn’t mind some of your blonde curls and blue eyes!

 

Thank you Sir may I have another!

bend over

Seriously, I feel like I have to bend over and take whatever the government is dishing out!

I have been on the State of Illinois Pre-existing Condition Plan insurance.  It wasn’t cheap, it was a $5,000 deductible before they paid a dime, plus $350/month premium.  I joined last November, so to date I have paid $7,800 for insurance out of my pocket so far.  And I was happy to do so, as my hip replacement plus complications have run up the bill way past that.

HOWEVER.  The states have run out of money, and now are transferring everyone over to the Federal Program.  In the MIDDLE OF THE CALENDAR YEAR.  There is NO credit for any money you have paid to the state so far this year.  So basically, you start from scratch again, and may end up paying double, like me.  Lucky me.  The premiums for the federal insurance are $567/month, and the out-of-pocket is $3,125.  So for the rest of this year it will cost me and ADDITIONAL $6,527.  This year, I will have to spend $14,327 for insurance.

I’m sorry, that is so not fair.  They should have done this transition at the beginning of the calendar year, so people don’t get screwed into having to pay double.  People in this program obviously have medical problems, and this is just another burden to add to their woes.

I don’t mean to sound ungrateful.  I am trying to be a good citizen, and PAY for my medical care, and not just expect the government to take care of me for free.

I really needed this kick in the teeth this month.  So thank you.  Thank you very much.

 

The incredible edible leg

turkeylegYep. That leg. That same leg that keeps causing me trouble.  I’m not sure whether to laugh or cry at this point.  I do have some graphic pics posted so if you don’t like blood, turn away my friend.

I had another surgery on Thursday to clean things out again.  Thought it was doing well, Not draining much, not like the last time.  Well, that was soon to change.

I had a massive bleed yesterday afternoon unexpectedly, scared the shit out of me.  My leg felt like a feast for coven of vampires.

I had been driving to the movie theatre.  My first excursion in a month!  When I got there, I got out of the car, and stood there stupidly looking at a puddle of blood on my seat.  Then I felt the drips down my leg.  I opened my pants right there in the parking lot and looked inside, and oh my…….this is what I saw:

leg

I didn’t know what to do.  My first thought was that maybe it wasn’t so bad and I could go inside and put some paper towels on it and go see the movie.  Then I felt my side, and oh my……this is what I saw:

pants

So now that option was gone.  I started to feel light-headed at that point, so much blood.  Should I call 911, standing here in a parking lot?  Where are the damn ER’s in Lake County?  Lake Forest Hospital was at least 45 minutes away.  Then I remembered the Vista ER in Lindenhurst by my doctor’s office.  So I got back in the car and started driving.

I called my sister.  My poor sister.  Bout gave her a heart attack, again.  She was at the Wal-Mart and said she would meet me there.  Then she called back again, wanting me to pull over in case I passed out or something.  But I am stubborn and just kept driving, I figured I could get to the ER faster than an ambulance would get to me.

So I get there and go limping in the door with my cane.  As I walked up to the counter a bunch of bloody napkins I had stuffed in my pants fell on the floor.  The receptionists called for help right away and I was taken to a room immediately.  So remember that trick next time you go to the ER, cuts down on waiting time, lol.

The nurse helped me out of my bloody clothes and into a gown.  I was more concerned with getting the white sheets all bloody than my own leg I think.  At that point my sister and Bri arrived, and Bri stood right by my side the whole time, checking on the blood.  She loves blood and guts.  We are hoping she will be a doctor when she grows up!  At 4 she is very good already!  She was upset she didn’t have her Doc McStuffins kit with her, lol.

Doc came in, took all the bandaging off, cleaned it up, put pressure on it until it stopped bleeding, rebandaged me up, and sent me on my way.  He said it was from all the build up of fluid from the surgery etc, it just decided to all come out at once.  Who knows.  It bled for awhile longer, then slowed.

So, at that point, I was hungry.  My sister, niece, Bri and I went next door to a restaurant and had some lunch, and then I drove myself home.

I did lay down and be still etc. etc.  But then the Hawks were playing last night, so I decided to go to the local pub and watch them.  I did fine, no excessive bleeding, although I was prepared this time with extra clothes and bandages in the car.

This morning things were still doing ok.  So I went to that damn movie.  Man of Steel.  I am Woman of Steel.

superman

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.