Thursday, June 27, 2013

The past ten days have been long, stressful, scary, unnerving and a whole host of other things

The past ten days have been long, stressful, scary, unnerving and a whole host of other things all of which I am trying to work through but know all too well that it will take a lot of time and patience. As most people are aware my go-to form of processing various things is writing. It is the written word that helps process everything happening in the world around me. On Wednesday May 1st I returned to my old hospital stomping grounds for what was pretty much an elective and simple surgery. I still had wounds in my nub from the surgeries in December and within one of them was a very raw very exposed nerve causing a lot of pain because the tunnel it was in was so narrow. The decision was made to open that section of my nub up again making it far wider, easier to pack, and less painful. It was to be a 23hr stay.

These days a patient is one of three things following surgery: inpatient, outpatient, or on a 23hr hold. This is all to appease the insurance company gods. If a patient is registered on a 23hr hold it means that if something unexpected happens or if there’s a little more pain the hospital can set you up in a room for the night and as long as your discharge papers are dated to read that you were only a patient at the hospital for 23 instead of 24hrs the charge is the same as it is for outpatient surgery. If you go over that 23rd hour it becomes an inpatient charge which is far higher. To be better safe than sorry my surgeon opted to put me down under the 23hr rule.

The surgery itself went great. They widened one of the tunnels that had formed and had been giving me all kinds of grief with horrible pain from an exposed nerve. It also cut down the risk of further abscesses forming there. It was all going wonderfully until post-op where it was noticed that I wasn’t breathing quite right and they had to keep me intubated for a longer period of time. I wasn’t tubed for any huge length of time but no matter how long or short an intubation period lasts it’s a concern. What happened is something that has happened twice before. My Multiple Sclerosis was kicked into hyper drive. I lost 90% of the vision in my right eye, developed a really bad tremor in my right hand, felt weak and couldn’t breathe. There is a lesion in my spinal chord in just the right spot that when it activates even for just a second the nerves in my upper chest short circuit and stop working which constricts my lungs and heart. As I said, it’s happened twice before and both times it took 2-3 hours and a bag of steroids to calm things down and return everything to normal. This time was very different. I was on oxygen for 48hrs straight as well as given several rounds of IV steroids over several days and nebulizer-breathing treatment, which is, inhaled steroids.

I can safely say that I scared the crap out of every single person involved with my case, especially those who have known me for years. Everyone knows I have MS on top of the infection issues and everyone has seen a symptom here and there like a slight hand tremor. No one had ever seen me truly disabled by this monster. Needless to say I was immediately admitted to the hospital for as long as I needed to be there. I also had the misfortune of getting up out of bed and falling. Not only did I fall but I went down hard and landed squarely on the area of my nub that had just been freshly operated on. Thankfully other than some bleeding and pain no damage was done.

Now I am a truly independent person who will find all kinds of inventive ways of retaining my independence. When you fall in a hospital setting they immediately take what little independence you have away from you. My crutches were taken, my wheelchair was moved out of my reach and any time I needed or wanted to get up and out of bed even just to stretch I had to hit the nurse call button and wait for someone to come and help me. The final night in the hospital I sat up and leaned to the side slightly to grab my thing of ice water and both felt and heard a pop from inside my nub. Shortly thereafter I noticed that I was bleeding. I had some gauze packed inside and 3 ace wrapsholding everything together. Some people may remember that back in 2009 while at home on my couch I suffered an arterial hemorrhage from my nub which would have killed me had I been asleep when it happened. So needless to say, when the pop happened this time and I saw all of the blood I had myself a bit of a panic attack. Thankfully the resident on call that evening was one I’ve known for several years and get along with pretty well so she immediately understood why I was panicking and reassured me that it was not an artery. The following morning I was finally discharged.

While this surgery and subsequent hospitalization was truly hell on earth there is one absolutely incredible thing that came from it. I’ve always known it but this entire experience from the start in 2004 through now has shed so much light on the fact that I am surrounded by some pretty incredible people who care about me and love me unconditionally. I’ve always said that I have the most incredible support system of family, friends, neighbors and medical professionals and I’ve always whole-heartedly meant it. We all have people in our lives that say that all we have to do is say the word and they’ll be there in a heartbeat but how many of us actually do have those people in our lives? How many of us have friends who will give up whatever plans they had for a day to come and sit at our hospital bedside and sit through appointments with doctors with us because they know we need them that badly? How many will read our words about the way hospitals butcher cake and show up later with cupcakes just to make us smile and feel a little better? How many nurses will sit with you until you understand that the events in your life at the moment are crazy but that you, yourself, are not? How many will use their kid's crayons to draw you a picture to make you smile and make you see that they care? How many people will send carepackages from home to a friend we haven’t actually seen or talked to in 10 years aside from via Facebook? How many of us have people will stay up all hours with us while we cry? I may not know a lot of things and I may not have the best of luck in a lot of areas in my life but one thing I do know is how incredibly blessed I am to have some of the most incredible people in the world around me to help support me when I need them the most.

Thursday, June 6, 2013

It's a Hell of a Disease, This Multiple Sclerosis! plus: I've now undergone 47 surgeries including the amputation of my right leg above the knee

 Megan Jones, Columnist

I have been in the fight of my life against lie-threatening infections. I've now undergone 47 surgeries including the chosen amputation of my right leg above the knee. In September I underwent surgery for infection in my nub.

The doctor sat up looking as calm as he could
before shaking his head saying, "Well this sure isn't good."
"The tests have solidified our worst fear,
Notice the spots in your brain here, here, and here."
He then started to explain about the normal human brain
before sighing and saying, "I'm sorry but yours just isn't the same."

"Now none of this is normal by any stretch of the word
and I'm sorry to tell you that this can not be cured.
There are some medications that we can certainly try
and please understand that you're not going to die.
You'll get the best medications that I am able to give
and a normal life you'll hopefully be able to live."

Well it's a hell of a disease, this Multiple Sclerosis
and you'll never believe all of the hardships it poses.
Why is it that there are so few MS conventions?
It needs more support. It needs more national attention.
Possible symptoms include tremors, bad balance and pain
With a little more of the spotlight a cure could be gained.

It used to be considered only an adult's disease
but truth is it does strike children so innocent and carefree.
It's an unpredictable disease and it's scars are unseen
Multiple Sclerosis can be pretty damn mean.
Sometimes it makes even the little things incredibly tough
We can slow the progression but that's just not enough.

More and more people are being diagnosed
and chances are they are some people you know.
There should be TV shows called When MS Attacks
so that more and more people might get all of the facts.
They'd realize just how hard life with MS can at times be
and that millions are suffering silently with this disease.

It isn't a death sentence, it is far from the end
and through the diagnosis of MS you'll make some incredible friends.
You'll experience anger, frustration and fright
but you'll get back on your feet and fight the good fight.
Through walks, fundraisers, awareness and cash
we WILL one day make MS a disease of the past.