Before you pour that bucket of water over your head….

iceWell it seems like everybody is getting in on the action of the ALS ice bucket challenge.  I commend everyone for taking the plunge, so to speak, and also donating to a good cause.

But, before you video yourself and nominate other people to do the same, take a moment to think why this challenge came up in the first place.

Pete Frates, a former athlete with ALS, is credited with initiated the movement and going viral.  The effect of this challenge has been to raise millions and millions of dollars for research to fight this insidious disease.

So let’s take a look at this disease.  Most people know it as Lou Gehrig’s disease, because he puts a face and name we all know to it.  It is a motor neuron disease which robs it victims of motor function, leaving them with only their eyes and brains unaffected.

It is an ugly disease.  Nobody talks much about it, or wants to see pictures of videos of people in the later stages.  It is certainly not for the faint of heart.  I would not wish this disease on my worst enemy.  Well, maybe I would make a few exceptions 😉 .

There is a new video out that I saw on Facebook.  It really puts the whole ALS thing into perspective.  I think everyone should see this video, whether they are doing the ice bucket challenge or donating, to see what it is really all about.  It is not about dumping ice on your head and making the coolest video.  (Although I have seen some very unique ones!)  It is about raising money for an orphan disease that big pharma doesn’t waste their research dollars on, because not enough people have this disease to make it profitable.  Please take a few moments to watch this video.

I hope all the donations help ALS suffers.  I really do.  I hope the money donated actually goes towards a real cure, and helps the people that need it, and doesn’t get lost in administrative costs or something other than what it is intended for.

I wish we could do an ice bucket challenge for every disease in the world, so we could eradicate all the pain and suffering.  Crohn’s Disease, Parkinson’s Disease, heart disease, CANCER………big pharma only produces drugs to relieve the symptoms, because if they found a cure, they wouldn’t get money for their products.  One would think they if we can put a man on the moon, we could find some cures for things like AIDS and Cancer to name a few.  All the brilliant minds in the world….

How about Autism?  It affects so many of our children, and is on the rise.  It is scary stuff.  What is the damn cause?  Vaccinations?  GMO’s? (Genetically modified foods that allow us to eat corn etc that is sprayed with Round-Up.  Oh joy).  Who knows.  All kinds of bad shit out there.  Every day something new pops up.  Makes you want to drop off the grid and grow all your own food etc and become a hermit.

Anyway, I have been thinking about all this a lot, given all the pain and suffering I have experienced in the hospital/nursing home this past year and a half.  I thought I was the unluckiest person in the world, and often felt sorry for myself.  Let me tell you, after some of the videos I have seen about ALS sufferers, I am ashamed of myself.  My battles were temporary.  I got better.  There was always a light at the end of the tunnel.  These people don’t have a light.  They are handed a death sentence.  And a horrible path to the death.  I don’t know if I would be strong enough to handle it.

When it came out that Robin Williams was suffering from Parkinson’s, my first thought was, that was it.  The final straw.  He knew what was ahead for him, and maybe didn’t want to deal with it.  I can understand that to a certain extent.  My Crohn’s disease is a chronic incurable disease.  However, it is manageable, to a certain extent, and is not necessarily a death sentence.  It is definitely an inconvenience, but you adapt.  You may not have 100% control over your bowels, but you still can get up every day and walk and talk and go about daily life for the most part.  Yes, there are bad times when you can’t.  I have spent many weeks in the hospital due to my Crohn’s.  But in my mind I always knew it was a just a setback that I could overcome, and luckily for me, it got better after surgery to remove some intestines.  ALS, or Parkinsons, not so much.  I watched my BIL with his Parkinsons for many years and saw how he deteriorated.  He was a brave man, who soldiered on every day.  It was very sad for his family to see the effects.  Luckily, every day there are more and more treatments for diseases like Crohn’s and Parkinsons. So far, not much for ALS.

But we need CURES.  Cures for all these insidious diseases.  I think ALS would probably rate as one of the worst.  Your body fails you but your mind is still sharp as a tack.  I myself worry about Alzheimers, as my mother had it.  Your body might be ok, but your mind is gone.  The opposite of ALS.  But just as devasting.

So, I am glad to see the ice bucket challenge.  I am glad to see the money donated.  I hope it helps.  I really, really do.  These people need a glimmer of hope.


How many spoons do you need?


Some time ago I heard a story about spoons, in regards to Crohn’s disease.  I don’t remember it exactly, and I’m going to apply it to my hip situation today.  It might help people understand what I am going through, or any people for that matter.  So here goes.

When you are sick, or don’t have a hip like me, you wake up every day with only a certain amount of energy, or spoons if you will, to get through the day. Every task, every chore, yea, every bit of entertainment costs you spoons. Some days you will wake up with more spoons than other days. Therefore, you must choose the use of your spoons wisely.

Today I woke up with 10 spoons. To get out of bed go to the kitchen and get coffee cost me one spoon. To make breakfast cost me another spoon. I got showered and dressed, that was probably more than one spoon. I talked to insurance companies and nurses. Another spoon. I am typing up this blog. Spoon.

Sigh. Here it is not even lunchtime and I’ve already used up 5 spoons. Only 5 more left to get me through the rest of the day and bedtime. I must be conservative with my spoons, because if I “borrow” a spoon from tomorrow for today, tomorrow will be that much more difficult.

So how many dang spoons do I really need? Well, when you are feeling good and able to do just about anything you want, you feel like you have an unlimited number of spoons. Me, I feel lucky that I have worked my way up to 10 spoons. Right after surgery I think I started out with only one spoon.

It is difficult to answer people when they ask how you feel, or how your day has been. I think this spoon analogy is an easy way to get people to realize how being handicapped in some way feels. Cause once your spoons are gone, they are gone dude. I don’t care how much you beg and plead and cry, there are no more spoons to be had. So learn your lesson and be more careful in how you spend your spoons tomorrow.

You never know how many spoons you will wake up with.

How to survive a hospital incarceration

My brother-in-law recently had surgery.  It drudged up memories of my last surgery about 5 years ago.  I went in fairly healthy and hopeful, and came out almost dead and changed for life.

In everyone’s life, surgery is almost a certainty at one time or another.  I have had more than my share, mostly around my home in Lake County.  For my last surgery, my wonderful county club hospital doctor wanted me to have the BEST surgeon at a TOP hospital for Crohn’s.  He sent me to a big teaching hospital (BTH will used as alias so as to protect the identity of the innocent) in Chicago.  Great teaching hospital, great doctors, a big deal in downtown Chicago.  I thought I was 100% prepared, and anticipated every circumstance.  However, I did not take into consideration that my own body might betray me, and that I would not be able to act as my own advocate. 

My sister and niece went with me and planned to spend the night and go home the next morning after checking to see if I was ok.  I would come home a week later.  Upon arrival at the hospital, everything started to go wrong, from the get go.  They couldn’t get an IV in me.  The doctor was running late.  The nurses blew out all my veins out.  The anesthesiologist was called to knock me out and then put in an IV.  Surgery started very late.  Poor sister left in waiting room.  Doctor finally came out at 7 pm and told her I was done and would be taken to a room in an hour or so.  At 10 pm security escorted her out, they didn’t know where I was.  At 11 pm I woke up in a big dark empty room.  I squinted at the clock, and saw 11.  I thought it was still morning.  I passed out again, and then woke up when somebody asked me who I was.  At 2 am I remember being transferred to a room.  I have no idea where I was or why I was lost until 2 am.  I firmly believe I was left by mistake in the recovery room, all alone.

My sister and niece came by in the morning, and then left to catch the train home.  This is when my REAL ordeal started.  My right lung developed an air embolism from the anesthesia tube, and so they had to take out my epidural, and put me on push button morphine, which I very insistently told me doctor ahead of time DOES NOT WORK ON ME.  I am VERY resistant to all pain meds.  Heck, they can hardly get me to sleep with anesthesia!

The next five days went by excruciating slowly.  The nurses came in, took my vitals and poked me with needles and stole my blood, and that was about it.  Nobody washed me, helped me brush my teeth, nothing.  I laid there like a corpse, barely able to speak, as I had to focus all my energy on my pain.  Every minute seemed like an hour.  My whole existence had narrowed down to a small bed filled with pain and discomfort. The doctor would come in and I would just nod my head, I have no idea what they were asking me.  Finally I got to the point where I could speak, and the next time the intern came in, I broke down crying hysterically, telling him my tale of woe and neglect from the nursing staff.  I was a dirty, filthy, stinking mess.  Soon, I heard my doctor’s voice in the hallway, and a whole staff of nurses came in, to help me into the bathroom and clean me up and put on a new gown etc.  I felt so much better after that.  The doctor apologized profusely for the lack of care I had received, and then told me, that’s why most patients have family come and stay with them, there is a pullout window seat in all the rooms.  Apparently the nursing staff at a large teaching hospital doesn’t recognize a patient’s needs.  To their defense, I never had the same nurse twice, and most of them barely spoke English.  So I would say there was a HUGE lack of communication.

At that point I decided I definitely did not want to stay there anymore, and I better get out while I was still alive.  I begged the doctor to let me go home, and she finally consented.  So at 5 pm on Day 5, I called a limo to come take me home.  What an idiot move that turned out to be.  Rush hour.  2 and 1/2 hours of a bumpy car ride with an incision from the ribs to pubic bone dissecting my midsection.  Finally got home to my own bed and slept like a log the first night.  However, I still could not move about on my own and spent the next few days in terrible pain still.  Thank goodness for the kindness of my sister to feed me. Then, my incision developed an infection, most likely picked up at the hospital.  So I had to deal with another visit to the doctor who had to open the incision up and drain it and antibiotics and that whole business.

I tried to document everything that happened to me, and brought it to my doctor on my follow-up visit.  She again apologize and said she hoped this never happened again to another patient.  I told her that I realize now that a patient needs to have an advocate with them to make sure they are being taken care of properly, but that there are many people out there that are single or old and have nobody to stay with them 24/7 until they can take care of themselves.  Most people assume they are leaving their loved ones in the good care of a nursing staff, when in reality the nurses haven’t a clue as to your mental state, or even physical pain for the that matter, especially when you cannot speak and are not in your right mind.  Now, this is NOT true at all hospitals, or with all nurses, I have had the BEST nurses in the world at my suburban county club hospital, who even gives back rubs at night to help you sleep.  However, recently my hospital was gobbled up by none other than BTH, so I have NO IDEA what that means.  I can only hope they still have the same quality of nurses as before.  With the rising cost of health care, and the number of people with no insurance who cannot pay their bills, the hospitals are really taking a beating lately, and quite honestly don’t think things will improve.

So the moral to this whole story is to make sure your loved ones have a patient advocate by their side to make sure they are taken care of properly, especially the elderly or single people, who may not have any visitors.  Nurses are busy people, and don’t have the time to chat with patients to truly assess their condition.  I would say that most nurses try their hardest, but staffing shortages make it hard to complete all their duties.  Ultimately, YOU are responsible for your own welfare, and cannot depend upon the kindness of strangers.

Go back to bed before you hurt yourself…or someone else!

Ever have one of “those” days?  No sleep the night before, and before your eyes are all the way open in the morning, you are counting down the minutes until you can crawl back into bed.

That’s me this morning.  Yesterday went back to the dentist cause my jaw/tooth was aching so bad, thought it was from the cavity refill.  Partly, yes.  Mostly, it is from a really red throat and swollen gland from a sinus infection!  Who knew?  I didn’t have a runny nose or anything, never crossed my mind.  Now I am on strong antibiotics, and hope it knocks it out soon, today feels worse.

Also, my Crohn’s has been on a rampage this week, and the antibiotics will just add fuel to the fire.  One of those, damned if you do, damned if you don’t situations.  Right now the mouth takes priority.

So I woke up out of sorts today, and my Catholic guilt won’t let me have a sick day and just go back to bed.  Oh no.  There are too many other things to worry about.  Things must get done.  Today.  Not tomorrow.  I can just hear my mother shouting at me, telling me I am lazy and to stop reading that book and do something useful!  My mother has been dead for 8 years now.  She still has the power to yell at me from her urn on my coffee table.  That Catholic guilt just never quits.  And that’s a blog for another time.

I’m going to bed now before something else malfunctions.


Living a chronic incurable life

I’m chronic and incurable.  That’s what they told me at age 30.  I remember age 30 very well.  It was the age of my first divorce.  It literally kicked the crap out of me.  Very shortly after my very traumatic divorce, I ended up in the hospital, thinking my life was ending.  With every drop of blood that gushed out into the toliet, I was sure something vital had burst inside of me and I was bleeding out.  After about 5 days and 20 pounds later, I was given the good news.  I wasn’t going to die.  I had Crohn’s Disease. 

Crohn’s Disease?  WTF?  I had never heard of it before, so it couldn’t be so bad, right?  Hey, great weight lose program!  20 pounds in days!  However, 50 pounds later and a liquid diet for 3 months, it wasn’t so funny.  Neither were the meds.  Specifically, steriods.  Miracle drug, but nasty ass side effects.  Stress was usually the precursor to set off a flare.

Eventually, I got back to normal.  A NEW normal.  My life would never be the same again.  I was young and dumb.  I didn’t realize that “chronic” meant lifetime.  It wasn’t just an occasional inconvenience.  It was EVERY DAY.  Some days, you forget.  Then it comes roaring back to bite you in the ass.  Literally.  Semi-annual emergency hospital stays, hooked up to IV’s, looking forward to broth for dinner for a week.  Regular courses of steriods, antibiotics, immune suppressors, chemo drugs.  Lots of quality bathroom time. Complications that included pancreatitis, malignant melanoma, hysterectomy, fistulas, small bowel resection etc.  Nice.

Time goes on.  Another marriage.  Another failure.  Equally bad luck with choice of new job.  Bad economy.  Cancellation of health insurance.   I felt like I had a flashing sign on my back,  NO HEALTH INSURANCE, HAVE CHRONIC INCURABLE DISEASE, PLEASE KICK ME SOME MORE.  Incredible stressors associated with job. Constant turmoil, constant abuse, constant crying.  STRESS.   More bad stuff, that I cannot go into at this point.  Let’s just say, lowest of the low.  Cannot go to GI doctor,  cannot afford medicine, cannot go to hospital.

I finally hand myself back over to God, once again.  He sends me my guardian angel, and sets forth a chain reaction of events to bring me back into the light.  He takes charge and removes me from an impossible job situation and makes my Crohns bearable with no drugs, and a kind GP doctor that helps me, both physically and mentally.  Slowly but surely I got better. 

I still have no insurance.  I still have no job.  I still have, and will always have Crohns Disease.  But I do have what really counts.  I have family, I have friends, I have a smile on my face (usually) and most importantly, I have God, who keeps me going from day to day.

Welcome to a chronic incurable life.