Thursday, March 28, 2013

Up Early With A Bum Shoulder And Some Thoughts

I was tossing and turning for quite some time early this morning, unable to get comfortable to sleep so I finally gave up and got up.  It's 4am.  This isn't the first time I've been up at this hour because of pain and it always makes me feel like an old lady - nothing against old ladies and getting up early.  In fact, I don't mind being up this early if I've gone to bed early though.  It's quiet in the house and I get to see the morning turn from dark to light outside.  I have about two hours of peace when I get up this early cause once it hits 6am, everyone is up getting ready for work and the TV is on with the news.  But I'm up this early because of my shoulder.  It's also a little unfortunate that I can't really get the coffee pot started till 5:30 cause it would just be too early otherwise.  So I have to wait a little over an hour now for some hot coffee.  Meanwhile, it's a hot rice bag on my shoulder to ease the pain and discomfort and writing.

I have started wearing my collar again in the morning hours till lunch.  Not the Watusi yet, because of the skin necrosis, but the soft collar at least.  It still does some good, despite how uncomfortable it starts to get.  I still have not heard from G and am starting to get anxious and antsy about it.  I'd like to get the use of my arm back but since the clean MRI, no one seems to be in a hurry about it.  I know G was in surgery all day Monday and Tuesdays are not always his best days for clinic since he's sometimes over at the wound care clinic at the OBC so he may not have seen my email yet.  But he's definitely in on Thursdays so maybe I will hear today and if not by this morning I may give another call.

A good friend of mine posted this below to my facebook wall on my five year anniversary and I thought it was perfect for what I am going through on this journey.  I think I have a tendency to shield myself from certain things, both beauty and terror like things.  But, that's not what life is about.  Just let it all happen to you - the beauty and the terror and feel it all.  I think I already do feel everything but there are some feelings I don't want to allow myself to feel but I must just let myself feel them.  Most of all, no matter what happens to me, whether it be a beautiful thing or a terrifying thing, I must keep going.  See the beauty with my eyes and heart wide open and slog through the mud of terror but keep on keepin' on.  I admire the Brits in that way.  They have a very stiff upper lip by nature when it comes to shit happening.  Keep calm and carry on.  Let everything happen to you and just keep going.

Monday, March 25, 2013

Full of Frustration

I am becoming more and more frustrated with this situation with my shoulder/arm.  I almost had a little breakdown when I tried to reach for my book today, which was sitting on the side table next to me on my right side and because I can't lift my arm, I basically reached up with my hand and crawled my fingers towards the book but in the process I knocked down the TV controller, the DVD controller, my rice bag and my glasses and I still didn't manage to get my book.  I just flopped my arm down and shut my eyes hoping tears wouldn't start.  Thankfully, they didn't.  Then I began the process of picking everything up that I could, slowly, and trying to put them back without knocking them or something else back down.

I emailed G for a couple reasons:  he wanted me to let him know in a couple weeks how those Kenalog shots worked out and I wanted to make him aware that I had called his medical assistant about getting set up with physical therapy but  haven't heard on it yet and also what he wanted to do next - like see me again in a few weeks or hear from me after I've had some therapy and see how my shoulder is doing, etc.  I told him the Kenalog shots seemed only to work temporarily with relaxing the contractures cause I feel tight again and I feel the contractures pulling.  The right side of my neck where I just had surgery is definitely better, definitely looser than it was before but it is still pulling a bit.  I need to be wearing a collar, specifically the Watusi collar but, I can't until this spot where I have skin necrosis happening on my neck is healed.  Who knows how long that is going to take.  The longer I wait to wear the Watusi collar the worse my neck will get, the tighter it will get.  So I also feel frustrated with that.

I'm just full of frustration lately between my arm/shoulder, the pain with that, and the situation with my neck.  I know G is in surgery all day today but, he's in clinic tomorrow so maybe I'll hear something from him tomorrow about what his plans are.  Meanwhile, I pray for patience.

Saturday, March 23, 2013

MRI Update

We are people helping people this morning.  My mom, dad and brother have been working very hard cleaning out a lot of things in the house that we just don't need/use anymore and hauling it off to "People Helping People."  I would help but I can't do much with my shoulder.  So I feel a little helpless.  But, they got quite a bit of good stuff out there to them and stuff that isn't so nice is being prepared to go to the dump.

OK, so, an update on what's going on with me.  I got a call Thursday from G's medical assistant that the MRI did not show any damage or tear to my rotator cuff.  So, he's wondering if there is some kind of severe bruising in my shoulder muscles from the weight of the tissue expander causing my problems.  He wants me to try some physical therapy on it and see what happens with that.  I'm waiting for the referral to go through and get a call to set up an appointment at the physical therapy at the hospital here - Grande Ronde Hospital.  So, good news...I don't have to have rotator cuff surgery.  But I don't know if down the line, if physical therapy doesn't work and I still can't lift my right arm, if some kind of other surgery is going to be necessary.  I hope not.  But, you never know with me.  I'm a wild card.

I am still having pain and I still can't lift my arm even halfway to shoulder height.  I have tried to do research on the inability to lift an arm but it's hard to research that.  You get a lot of weird stuff.  What I have gotten out of it is everything points to problems with the rotator cuff.  But, my MRI shows no problems with my rotator cuff!  Which, don't get me wrong, is great.  But, maybe you can understand my frustration when even though there's relief from the clean MRI, there's still no clear answer as to why I'm having pain and why I can't freaking lift my arm!  I guess we'll see what happens with physical therapy.  Hopefully something good. Cause I am most tired of this pain and a bum arm.

Sunday, March 17, 2013

Reflections On Five Years

Today is the 5 year anniversary of my accident.  Or as many say in the burn community, "burniversary".  I know I have come a long way since that fateful night but I'm so close to it that it's hard to see just how far I've really come.  I've looked back on some pictures and it's evident that I have come so far in five years but it's still ongoing and there's really no end in sight, which, makes every day tough to wake up to.  I want to first dis spell a couple of terrible rumors about that night.  I'm sure there are more that I don't know about but I'll address the ones I do.  NO, I did not do it on purpose and NO, I was not on drugs.  I know it's much more interesting to make an incident juicy by starting rumors like that and helping to spread them but it's hurtful and upsetting to me and my family.  I'm sorry to take the juice out of it for all of you who have been involved in such rumors but it was just an accident.  A lighter caught my clothes on fire and I have no memory of the accident.  Which is not uncommon.  In fact, it happens to a lot to people who are in traumatic accidents.  They just don't remember.  But please, STOP starting and spreading such rumors about what happened to me.

Five years ago today I almost lost my life.  Instead of the anniversary of my accident, it could have been the anniversary of my death.  But I am still here and I am still wondering why I am still here when I really should not have made it.  Still wondering if there's some purpose for me and what it may be.  I search for the answer to that every day but so far I haven't figured it out.  I know I will figure it out one day but I am impatient to know why I am still alive when death was knocking at my door and what I am supposed to do with my life having been given a second chance.  And one of my biggest fears now is screwing up this second chance at life I have been given.  I'm scared I'm gonna mess it up or waste it.

My greatest ambition in life was to act and sing and be successful with it.  But with each surgery brings new, horrid scars, I fear that I will have to face the reality of that line of work and in turn face the reality that I cannot do what I love to do most in this world because of those scars.  And as far as singing goes, that is something I will have to work on and see what comes of it.  I lost the voice I had in the accident due to smoke inhalation damage.  My diaphragm was also affected so it is hard for me to get out full sentences before I need to take a breath so as singing takes a lot more breath, it is even harder to sing full phrases before I run out of air.  I don't know if I can retrain it and get what I had back but it is something for me to work on.  Just as I love to act, I also love to sing.  I know there are many other things I am able to do behind the scenes.  It will just be hard to make that transition from being in front of the camera and on the stage to being behind the camera and behind the curtains.  It will be very hard.  But to look at it positively, as I am trying harder to do, maybe I will find something I'm really good at and really enjoy.

There has been a lot of learning, adjusting and growing in these five years since my accident.  Learning about the world of burns.  Adjusting to things I can't do and learning new ways to do other things.  Adjusting to needing help with the most basic things I'd been able to do on my own for years - like dressing, showering, getting a dish or glass down from the cupboard to name a few.  Adjusting to losing most of my independence and becoming dependent.  Learning to ask for help.  And growing up.  Not just growing up but growing into traits that were always in me but will now come to define me, hold me together during the hard times and shine during the good.  Like bravery, courage, strength, tenacity, fearlessness, patience, diligence, honesty, integrity, compassion, humility and overall badassness.  Your character is the sum of all the qualities that make you who you are and though all those character traits I just listed made up who I was already, I grew into them more powerfully after the accident and with each passing day; every bad day, every good day, through every surgery, each new year, and through the good and bad news I have received in my recovery.

Faith and acceptance have been my weak point.  I have asked almost every day for five years, "why me" and still cannot get an answer to my burning question.  And because I don't understand why this happened to me, my faith has waned.  But as I have lately pondered over Carl Jung's view that there are some problems in life that are simply unsolvable and it would serve me better to just accept that life is difficult, life will become less difficult and I will find a life in all of this.  I will find my faith again.  And I will find my purpose.

Be strong, SB.  Be courageous, Sarah Beth.  Be bold.  Be fearless.  And remember what Kahlil Gibran said: "The most massive characters are seared with scars."  Well, you, Sarah Beth, are seared with massive scars, both physically and emotionally, and those scars, all your experiences in life but most particularly these past five years, have created a massive character in you.  You will rise from your ashes.

Thursday, March 14, 2013

Problems in Healing and Recovery: A Disappointing Post-Op Doctor Appointment

Well, I had a hard day today at the doctor's office.  I went in to see G (I'm now calling my doctor "G" because he has often signed his emails to me with just a G for Garrett) for a post-op follow-up appointment from surgery #38 that happened February 22nd.  For a little background, I had, in the past two weeks sent G a few photos of a spot on my neck where I just recently had surgery that did not look right.  His first email back from the initial photos and email I sent was that it looked to him like there was a bit of skin necrosis happening.  He said it looked small enough that he thought it would heal on its own with some ointment on it daily and to come in and see him in the next couple weeks.  I already had an appointment to see him on the  A week later, I sent him another email with another photo because it looked worse and like it had started to spread, which is not a good thing.  Skin necrosis is basically tissue death.  The skin is not getting proper blood supply and oxygen so it is dying.  This often happens in the corner areas where skin has been pulled for whatever kind of procedure and blood and oxygen just doesn't get to that tightly pulled area.  He said it didn't look like an emergency but he definitely wanted to see me in his office in the next couple weeks.  

Another thing that has been happening since my surgery is the inability to lift my right arm.  At first, when I mentioned it in one of my recent blog posts about how I was healing from this latest surgery, I thought it was just sore when I tried to lift it.  But as days went on, I noticed it wasn't really soreness preventing me from lifting my right arm.  When I tried to lift my right arm, it was like I had no shoulder muscle to lift it.  And I was only getting it up to about halfway to shoulder height.  And there was pain.  As days turned into weeks, it only got worse and worse to where even just pouring a cup of coffee was almost impossible.  I could not raise my right arm and the pain was getting worse.

Fast forward to today and my appointment in Portland with G.  First thing was first - he took a look at the spot on my neck where the skin necrosis was happening.  He didn't think it looked any worse from the last time he looked at it but it was definitely skin necrosis.  The skin there is dying.  But he thought it was small enough that it will heal on its own with some care.  Then he took a look at how things looked from the latest surgery.  He asked how it felt and had me turn my head in different ways.  I told him it felt quite a bit better but it still pulled slightly.  I showed him the biggest pull was happening in the front of my neck, underneath that nice free flap that was taken from my leg.  So he checked that out and decided for now he would try some Kenalog injections to see if it would help relax the muscles and contractures.  Kenalog is a steroid that is often used in cases of arthritis, blood diseases, allergic disorders, certain cancers, and collagen and skin diseases.  So he gave me about four shots in each side of my neck as well as about four or five more in the front of my neck.  Some of them I couldn't feel cause the nerves are damaged and numb but there were a couple I could feel and man, they really hurt.

Lastly we took a look at my shoulder.  He looked at how high I could raise it on my own, which wasn't very high.  Then he checked it by having me relax my arm in his hands and he raised it and moved it in different directions.  When I relaxed it and he did the work, he was able to raise it higher but there was pain in some areas.  So, he sat and thought.  I could imagine the wheels working in his brilliant brain trying to figure out what was going on with my shoulder.  Finally he said he wondered if the tissue expander did any damage to the muscle or Rotator Cuff.  Great, I thought.  I know where this is going.  And he went there.  He said he wants to get an MRI done to see what's going on in my shoulder and there may be a necessary shoulder surgery in the near future.  Awesome.  This is not what I need.  I wondered if that tissue expander did any kind of damage with all the problems and pain I had with it.

So, the next couple steps are to first, get an MRI done and have the results sent to G and see what he says and second, see how these Kenalog shots did for me - if those areas feel any more flexible or there's greater range of motion and email him in a couple weeks with that information.  I have a feeling shoulder surgery is in my near future.  It's just too bad and too painful to be anything less than damage that must be fixed with surgery. And I am not looking forward to it.  I just can't catch a break!

What a loaded appointment.  So much going on with my healing and recovery.  And really, nothing good.  It was a disappointing day.  I was hoping for better news to get me through my upcoming 5th year anniversary of my accident in three days.  But no, not for me.

Friday, March 8, 2013

A Powerful Statement About the Problems of Life

Today as I was surfing through my Facebook newsfeed, I came upon a good friend of mine's status that inspired today's blog post.  It's a quote from Carl Jung that I had never heard before until I read it on Mary Helen's status post this morning.  It had truly impacted me in a way I'm not sure I'll be able to describe.

"The greatest and most important problems of life are fundamentally unsolvable.  They can never be solved, but only outgrown."  

What a powerful statement.  It's something that reads more and more powerful the more you read it.  Read it again, and slowly, taking each word in.  How does it make you feel about life and the problems we encounter in our lives?  For me, when I read it, it was so profound in it's impact on me that it was like there was a lift in my soul; a very releasing state to be in, as Mary Helen described it.  And it really is releasing.  A releasing of the need to control what we really have no control over or the need to change what cannot be changed and just learn to accept what is.  My friend Mary Helen said this: "I guess it goes along with the idea that life is a mystery and it behooves us not to try to manipulate things to make them come out like you think they should be.  It kind of goes along with Scott Peck's philosophy that life is difficult and the sooner we embrace that idea, the less difficult it will be."  I thought she reflected on that very eloquently and truthfully.  I agree with her because I have been trying very hard for the five years now since my accident to try and understand why this happened.  And it always seems the harder I try to understand, the more I don't understand and the more upset I become.  I need to just let go of the need to understand it and just accept what happened and embrace that life is just difficult and shit happens.  Perhaps the sooner I do that, the less difficult life will be.  Even as I write that, I feel better, lighter, happier.  I mean, life will still be difficult for me because of what happened to me.  I'm not saying that as soon as I embrace that life is difficult and shit happens that it will all be sunshine and smiles.  It probably won't be for you either if you're experiencing something difficult in your life.  What I am saying and what I think Carl Jung is trying to say is that the greatest and most difficult problems in life cannot be solved but can be outgrown by accepting and letting go of that need to fix and solve and change.  Instead, accept and embrace and you will outgrow it or you will go mad trying to solve what cannot be solved or changed.  Which is kinda where I've been headed trying to change what I cannot change.  It's only made me deeply unhappy.  Time to stop trying to understand what I will never be able to understand.  Time to accept that life is difficult, shit happens.  What I do have control over is finding the good things in my life, taking that deep breath and saying to myself, "It will get better.  I will be OK," and maybe I will find myself in a happier, more content frame of mind about my life.

Thursday, March 7, 2013

Healing Well But Still Recovering

Healing is going well from this last surgery.  I still have some pain and when I try to do stuff that I think I'm ready to do, then I really have pain.  I'm just not completely ready to do certain things yet.  Still recovering.  I have trouble lifting my right arm to even level height of my shoulder.  I just don't have the strength back yet from having surgery there.  So dressing and taking showers and even cutting my food has gotten harder since.  I thought this surgery would be a lot easier than most of the others but the recovery is proving to be almost as difficult.  I still have four stitches in the front corner that will come out when I go to my post-op follow up appointment in Portland next week.  They did dermaglue on the rest of it.  I have also started wearing my soft collar during the morning hours and take it off at lunch (which is a total of about 6 hours a day) right now.  I tried wearing it for the first time at night and through my sleep but when I woke up the next morning my neck hurt SO bad.  I mean, so bad that I could barely move my head in any direction.  I think I strained it wearing it too soon and for too long.  So we have cut back to just wearing it when I wake up and until lunch until I'm more healed and recovered.  Then I will try wearing the watusi collar, which is absolute hell.  There is no give in it and it can be pretty painful and horrible.  But this flap went so well and looks pretty good that I want it to work.  Well, I always want my surgeries to work but this is my 5th release and 6th surgery concentrated to the right side of my neck in a matter of 8 months and I don't want to try a 7th.

So, I'm still doing a lot of resting in this recovery of surgery #38 but all is looking good so far.  We'll see what the doc says next week.