Friday, November 22, 2013

A Great Post Op Appointment 11/19/13

This last Tuesday, November 19th, I had my post op appointment in Portland with my new burn doctor, Dr. Kim.  Portland is a 4.5 hour drive away from where I live and this was our third trip in three weeks so I was a little tired to make another trip.  The drive there was not so much fun.  Like I said, this was our third trip in three weeks, I was tired of traveling the 4.5 hours there, sleeping in an uncomfortable bed (for me), and I'd just had surgery.  There were a lot of negative things at play on the trip over.  I tried to sleep as much as possible but again, uncomfortable.

My appointment was the following morning.  We usually try to make appointments for a morning so that way one of my parents, whoever is going to drive me, can work half a day in the morning and then we drive over that afternoon, stay the night and go to my appointment the next morning, come home.  My appointment this time was at 10:00 AM.  My dad was with me.  We woke up early so the morning seemed to drag on so slow as we waited to go to breakfast before the appointment.  Finally we checked out and headed to the restaurant to have breakfast before the appointment.  We had some time but we ordered our food and seriously about 10 minutes later our food arrived.  So, we were an hour early to the doctor.  But, it worked out for the best because we got in about 40 minutes early.  Hot dog.

My appointment started out with fun teasing between Steve and I.  Then he (sort of) got down to business taking out the stitches that held the bolster on top of my graft.  I say sort of because he was still saying things that made me laugh and visa versa even though we should have been a bit more serious as he was dealing with a delicate matter in getting that bolster off.  But that's just the type of relationship we have.

Even through all of our giggling, Steve got the bolster off and man it felt good to have that thing off.  He looked at my neck and said, "Looks great!  Wanna have a look?"  Yeah, of course.   I sat up and my dad first came over to look at it and then I walked over to the mirror behind the door and had a look.  Looked fantastic.  I moved my neck in different directions to see where it still pulled and there were some places but there always are.  The point, though, is that it wasn't pulling too bad in all the regular places so I felt good about that.  I was a little worried earlier in the week cause it still felt like it was pulling in the contractions so I feared he didn't get at the problem.  But the fear quickly diminished when the bolster came off and the contractions relaxed.  The graft looked good, looked healthy was a 100% take!!  I've never had a 100% take in all the surgeries I've had so this was very exciting!

(My latest neck graft from surgery #40 - full thickness, 100% take)

Steve left to get Dr. Kim who came in shortly after.  He had a look at the graft and began explaining what he did by drawing on a paper towel.  This was pretty cool cause I've never had it explained to me before how exactly they do the release and then the graft.  So, that was very interesting.  He also had a look at my donor site and said the stitches needed to stay in for another week cause the donor site was under a stressing pull because of it's location.  He's going to let my mother take them out since she has experience in taking out stitches when we were with G.  G often worried about us making the drive so my mother learned a lot of different things to take care of donor sites and grafts and taking out stitches was one of them.  So, Dr. Kim said it would be fine for us to take them out ourselves and not worry about driving back over.

I then asked about my lip.  I told him it has been a major problem for these past 5.5 years, ever since I was burned.  I have trouble eating, it can be difficult to talk sometimes and I often have a drooling problem.  He was very sympathetic to all of these things and basically said that he wanted to give my neck time to heal and then we would tackle my lip!  I was SO EXCITED at the prospect of FINALLY getting my lip worked on!!!  G always said we had to get my neck under control before we could even look at my lip but he also never knew what to do to attempt fixing my lip so it was like pulling teeth with him when it came to the reconstruction of my lip.  So to hear Kim was ready and willing to tackle the lip situation without hesitation was so exciting and promising.  I was hoping to get it worked on before the year was up but I understand he wants my neck to heal first.  I go back in January for an appointment to really have a look over on my lip and make plans for surgery!!!  FINALLY!!!  I can't describe to you the kind of relief and excitement I feel at the thought of finally getting my lip worked on!!  Oh, this is so GOOD!!

Sunday, November 17, 2013

My 40th Surgery

Last week on Tuesday I had my 40th surgery.  They performed a release and full thickness grafting procedure on my neck.  For those of you who don't know skin grafting is the transportation of skin from one area to another.  There are two types of skin grafting: spit thickness and full thickness.  A split thickness graft, which covers most of all of my body, includes the epidermis and part of the dermis of the skin and is much like peeling an apple or potato.  A split thickness can also be put through a skin mesher where it can expand up to nine times its size.  A split thickness graft is more commonly used as it can cover larger areas and its chances of being rejected by the body is low.  You can also take from the same site multiple times after it has healed.  A full thickness graft is where they cut out the full thickness of the skin, both the dermis and epidermis, at the donor site.  The donor site is then suture closed instead of just left to heal.  Both of these are called "harvesting the skin."

I always get nervous before a surgery because I don't like being put to sleep but, I was more nervous than usual for this surgery because it was with my new burn doctor.  Nothing against him, he's perfectly capable.  It's not like he's fresh out of medical school.  It's just my first surgery with a new burn doctor and he doesn't know my complicated body that is webbed with contractions and scar tissue and how it will respond.  I usually have an early morning surgery but this time my surgery wasn't until 2:15 in the afternoon so I had nearly all day to get more and more anxious and I didn't have much to do to in the hotel to keep my mind off of it.  So, I just kept thinking about everything that had gone wrong in the past and everything that could go wrong again.

FINALLY, 12:00 rolled around and we were off to the hospital to check in by 12:15.  Everything went as normal except the time of surgery changed to 3:00 and we were not told.  So, that was a little annoying but, the time slowly ticked away with med check questions, getting an IV in, and soon Dr. Kim was in to see me.  He had me look up and side to side to see where the contractions were on my neck and the way it pulled on my face.  He also had me pull up my gown on my legs to see where the best place to take the full thickness donor site from would be.  He marked me all up with a marker on my neck and on my upper right leg in my groin area where he had decided to take the donor skin.  Then he was gone to go do an operation before mine.  Dr. Scott, my anesthesiologist, whom I have had before, walked in around a quarter to three.  I remembered him and he remembered me.  It had been awhile since I had pain medicine and I was in pain so he gave me some IV pain medicine and said they were just about ready to take me.  Three o'clock tolled and the head nurse for the surgery and the anesthesiologist came back in, put up the rails on my bed, Dr. Scott put some "feel good" medicine in my IV to calm me down and help me relax and I said good bye to my mom as they wheeled me out of my room and headed to the OR.

My surgery was about 2 hours, just as Dr. Kim said.  But he did it a little differently.  Usually they clean out the contractions and scar tissue at the site and remove the damaged skin before replacing it with the donor skin.  What Dr. Kim did was simply make a cut in the skin across the contractions, let it split open, and then ADDED skin to where it split open.  At first I thought that was really the best way to do it.  To ADD skin rather than always trying to cut it out and REPLACE the whole thing only for it to contract back down again.  But I'm worried about him not cleaning out the contractions.  I can't see how it looks because there's a bolster stitched on top of the graft.  I can feel it and it feels better, but I think I can still feel the contractions at the top of the bolster with my finger, just barely cause of the bolster being in the way and they still feel like they're popping out.  So, I'm not totally sure of how it was done.  I'll know more when I get to see it at my post op appointment when the bolster is removed.

(Bolster stitched on top of graft on the neck)

My donor site looks good, though.  It's terribly painful, though, because it's right in the crease of my groin where my thigh meets my hip and it's about 7.5 inches long.  So, I can't really stand up so straight or it pulls really tight at the donor site.  And dressing changes hurt like the dickens because it's such a sensitive area.  Getting the stitches out on that one is not going to be fun.  I am not looking forward to that post op appointment.

 (Full thickness donor site, 7.5 inches long and sutured closed)

And speaking of my post op appointment, it is this Tuesday, Nov 19th so I will know more about my graft on my neck, how it looks, feels and if it took, get stitches out, and also I hope to discuss what we will be working on next in my reconstruction.  I'm going to try talking to him about my lower lip.  It's time to get something done about that and I think Dr. Kim will get it done.  At least I hope so.

Thursday, November 7, 2013

My New Burn Doctor

It's been awhile since I've written, I know.  I've been in a lot of pain and under a lot of stress lately.  So I've been spending a lot of my time dealing with those things and going to doctor appointment after doctor appointment.  My shoulder is unfortunately hurting again the way it did before I had surgery.  My orthopedic doctor said that this can be normal as scar tissue has blood supply and nerves wrapped up in it and as a result, pain can occur.  As my right shoulder is chock full of scar tissue, like the rest of my body, my extensive pain makes more sense.  But that's not exactly what I wanted to write about today.

What I really want to write to you about is the doctor appointment in Portland I had with my new burn doctor.  Yes, I said "new."  A bit ago, when I called to make an appointment with G, I found out that he was no longer at Legacy Emanuel, which is where I have my surgeries.  And in fact, they didn't know where he had gone to.  They didn't know why he left and they didn't know if he was practicing anywhere.  This news really upset me.  I had been working with him for five and a half years and went through 28 surgeries with him.  I trusted him.  He knew my body, the way it worked and how it responded to things.  We had a close relationship and that's very important in an extensive and involved doctor/patient relationship such as ours.  So to lose that and have to start again with another doctor is very upsetting and hard on your hope.

In G's place is a new doctor, Dr. Kim, with the same specialties as G had so plastic surgery and burn reconstruction.  I always seem to have a hard time liking my doctors, warming up to them and developing a relationship with them.  And this particular doctor/patient relationship is so very important to me cause it's the reconstruction of my body from the accident.  So, I had been worried since I made the appointment with Dr. Kim that I wasn't going to like him or he wasn't going to be kind and warm like G was or he wasn't gonna be willing to help me like G always was and so many other things.  But I got one nice surprise while I was waiting in the waiting room.  I was discussing G's sudden leave with one of the front desk girls when she told me G's old PA (Physician's Assistant), Steve, was back.  Oh, relief.  I was so happy to hear that.  I really adored Steve.  And I loved the G, Steve, and SB team we had going through the years before Steve left, and then G left.  We were fun together.  But, it was so great to hear that Steve was back cause at least he knew most of my case.  Knew how my body scarred and healed and reacted during surgery.  And also, he was a familiar face from before things went all hazy on me with G's leaving.

Unfortunately, Dr. Kim didn't make the great first impression by being an hour late.  I understood though.  I know these doctors can get caught up in surgeries and emergencies.  Finally I was called back.  And soon enough, Steve and Dr. Kim entered.  As soon as Steve opened the door he put me at ease by falling back into our old rhythm with, "Oh, here's trouble!"  With which I replied, "And here's bigger trouble!"  Dr. Kim introduced himself and I got a good feeling right away.  He started out by saying that Steve caught him up a little bit with my case.  He asked me some questions to get to know me and my burn better.  He wanted to see the free flap area on my leg that G did.  He kind of touched me all over and "explored" my body, more or less, to see where I was grafted and where there was skin yet to harvest.  There was some, "Take off your pants so I can see....." and "Can you show me your buttocks where they took that full thickness graft," and taking off my shirt so he could see my torso and back.  None of this phased me though as I was looked at like an item in a museum for 4 months while I was in the hospital by doctors, nurses, interns and physical therapists.  And then he wanted to know what I was in for that day.  I was there to see him about my neck.  My neck has been operated on 9 or 10 times alone and it always seems to get worse again and contract.  My chin and jawline are disappearing again because the scar tissue and contractures are so thick.  I turn my head and it pulls the whole side of my face.  It's pulling my lip down and out again to where it's hard to eat and talk.  And it's extremely uncomfortable.

After he had examined me and we talked about my neck and he took pictures, he asked me when I wanted surgery done.  I'd never been asked this before.  I was always just told, "we'll get it scheduled and call you."  So I it didn't take me more than a second to reply, "As soon as possible."  And he said, "OK, we'll make it happen."  And the appointment was over.  I was happy with the new doctor all in all, I think.  He was warm and kind and seemed proactive.  I think he needs to look over my case more with Steve though.  But I'm hoping he'll go over my history more before the surgery to get to know my body a little better and I hope he STAYS proactive most of all.  I hope he understands that I have a lot of things to work on and that will continue needing work on throughout my entire life.  G understood that.  I hope Dr. Kim will, too.

But I was pleased coming out of my appointment.  I felt it was a bit rushed but only because he was late.  I think he did a great job with seeing me with the time he had so that's OK.  I was even more impressed when on our drive home, I received a phone call from his MA who was all ready to schedule my surgery only 5 hours after I'd seen him.  I was VERY happy with that.  Usually I'd wait for a month and often have to call back to remind them we were doing surgery before it finally got scheduled and then it was another month away.  But I was called to schedule surgery immediately and they got me IN for surgery right away.  Surgery is next week already.  He is going to do a full thickness graft on my neck.  This isn't a new procedure for my neck.  It's been done two or three times before.  But that's what he wants to try this time around.  I don't trust him yet.  Like I said before, it takes me awhile to develop that trusting doctor/patient relationship so he's gonna have to prove himself to me, more or less.  I need to see that he can handle my body during surgery, handle my pain during recovery and stay proactive with my reconstruction.  But, right now, I'm pleased with him so far.

Tuesday, October 1, 2013

My 39th Surgery

I've waited to write about my latest surgery until all the facts were in since this has been such a confusing case with different opinions and different diagnoses.  So I got referred over to another doctor weeks ago from the one doctor who was giving me cortisone shots.  Since the cortisone shots weren't working and he didn't have a lot of expertise in shoulders, he referred me over to a different doctor.  When I saw the new doctor, he decided surgery was the next logical step since the cortisone shots weren't helping.  I was a little nervous about doing the surgery here because they don't know burns here and they don't know me here like they know me in Portland at Legacy Emanuel.  But, there didn't seem to be any other option so I decided to go ahead with it.  The surgery was going to be minor - arthroscopic surgery. I had to see my Orthopedic surgeon again cause here in LG, you have to have seen your surgeon within 30 days of the surgery and the appointment I had with him where we decided on surgery was outside of those 30 days.  I also learned that my Orthopedic surgeon was going to be leaving right after my surgery so on my next appointment I would also be meeting the doctor that was taking his place and who would be sitting in on my surgery since I would become his patient after the surgery.  

I had my appointment with the two surgeons and was even more nervous about doing this surgery but for new reasons to add to the other reasons.  The new reasons were that the surgeons themselves were a little nervous about operating on me because they don't know burns and they're nervous about the scar tissue and contractures that they might find in there.  So them being nervous about the operation made me more nervous than I already was.  I got to meet the new Orthopedic doctor who would be taking over my case and he did a few tests on me himself to get more acquainted with my problem.

My surgery was September 25th at 9:30 AM.  I had to check in at admitting at 7:30 AM.  So after checking in, I made my way to the surgicenter where I would be prepped for surgery.  I was placed in room A-2.  After getting my gown on, my brother (the pharmacist at Grande Ronde Hospital now) came in with an intern to check my medication list and when I last had everything.  It was cool seeing my brother in action be the boss in a high class career that he loves.  After my nurse and another nurse who came in to help tried putting in my IV without success and hurting me pretty bad, the anesthesiologist came in to talk to me.  I told him that I was a burn survivor and had had 38 previous surgeries and was difficult to intubate.  I also told him what intubation method was used on me successfully and his response to me was rather brash and snotty.  He just simply said, "No.  I can't do that."  There was no kind of, "thank you for the information," or "Ok, great, thanks."  Just, "No.  I can't do that."  After he left, I suddenly got very panicky feeling and started to have a bit of a panic attack.  I was bothered with how the nurses tried to get my IV and how much they hurt me and I was bothered by the anesthesiologist.  I added on that the surgeons were also nervous about operating on a burn patient.  I started to cry a bit and hyperventilate.  My mother hugged me and wiped my tears, told me everything would be OK.  It was just a rough start.  I wiped my tears the best I could cause they just slowly kept coming, and soon the Orthopedic surgeon was in to talk to me and mark my shoulder.  After he talked to me, he calmed me down and I felt better.

The anesthesiologist was soon back in to try and get an IV in me and I got a little panicky again because of my previous experience with the nurses trying to get an IV in me and how bad they hurt me.  But he did very well and didn't hurt me.  My brother came back in to see me for a bit.  That also helped calm me down just having him there.

Soon it was time to head in to the operating room.  I got in the operating room and the nurses were very kind to me.  Giving me extra blankets since it's always much colder in the operating room and stroking my arm as I breathed in the oxygen to prep me for the anesthesia.  I didn't like that my the anesthesiologist didn't let me know he was pumping the anesthesia into my IV to warn me like the anesthesiologists always do in Portland.  I just hate this part of surgery so much that I like to be talked to throughout it, letting me know what they're doing.  So suddenly I felt the hot sting of the anesthesia in my IV site and I knew I had only a few more seconds before I was out.

Next thing I knew I was waking up in the recovery area.  They gave me some pain meds and some time to wake up so they knew I was OK and then I was being wheeled back into my room.  When I got back into my room my mother greeted me and I asked for my usual post surgery snack - coffee and tomato soup (I always crave tomato soup after surgery.  Always.)  I recovered in my room for about an hour and a half before I was ready to get dressed and go home.  With my arm in a sling, I was wheeled out in a wheelchair to the car.

The surgery went well.  We got two conflicting reports as to what was actually done in surgery so I waited to write about it until today when I went to see the doctor for a post-op appointment.  When they got in to my shoulder using arthroscopy they discovered that the longhead of my biceps tendon was being "frayed" and "torn" by a contracture that was rubbing up against it.  It was also very red and inflamed.  The contracture had caused up to 50% of damage to the tendon and the surgeons felt the only way to fix this without cutting open my skin to do another alternative surgery was to cut the longhead biceps tendon completely.  This is not uncommon.  He said there was a lot of scar tissue and contractures in my shoulder hindering better mobility but aside from that tendon that was being "frayed," everything else in my shoulder looked good.  He also said my chances are 50/50 that I may get the mobility back that I had before but I did not need to go through physical therapy.  He gave me some exercises that I could do on my own at home.

So it looks like they found a cause for my agony and loss of range of motion these past 7 months and hopefully a solution to the problem.  I have three little wounds where they cut me open to insert the arthroscope and I go back in another week to get the stitches out.  I was in quite a bit of pain after the surgery for a couple days and handicapped since it was my right shoulder and I'm right handed so I had to have help eating (cutting my food, etc) and even going to the bathroom was difficult.  But things are getting easier and the pain is getting less though I'm still pretty sore inside my shoulder.  But hopefully the pain will soon cease all together and I won't be in agony anymore and I can work on getting mobility back.

Tuesday, September 3, 2013

Labor Day Weekend Camping

I had an awesome weekend this Labor Day weekend.  My parents recently bought a new tent trailer.  They have been looking at them for quite some time and finally found a perfect one for a good price.  So we took it out camping to Anthony Lakes for it's maiden voyage.  Since my brother is home again, he came as well.  So it was mom, dad, Jake, me and our five dogs.  My brother started his new job here at the hospital this last week so Dad and I took the tent trailer up to Anthony Friday morning to get a good camping spot before everyone started coming in for the three day weekend then Jake and mom came up later when Jake got off work at 3:30pm.

So dad and I headed up in the morning and had a beautiful drive up there.  The weather was supposed to be nice all weekend.  We got up there and were able to get one of our favorite camping spots so we were quite happy.  We got the trailer backed in and firstly got the dogs out and set up the kennel so they'd be out of the way and not running all over the place.

(Buddy and my baby girl Morgan snuggled up together in the kennel)

(Dad setting up our new tent trailer)

After dad got the tent trailer set up, he decided to go down to the host and get some firewood while I stayed at the camp with the dogs.  I sat there by myself for a short while just listening to the sounds of the forest and feeling the warmth of the sun on my back.  It felt so good to be out of the house and outside for a change.  Unfortunately my shoulder was hurting so bad so I took some pain pills and laid down in the trailer for a bit.  Soon dad was back with some wood. While I continued to lay down and rest my shoulder he started setting up the camp more setting up the canopy and getting things out of the trailer.  

(Our campsite)

(Our campsite - the fire pit area)

(Dad chopping up some firewood to make kindling)

Soon enough Jake and mom arrived.  We unloaded some more things from Jake's truck and started a fire to get ready to roast hot dogs for dinner.  

(Roasting hot dogs for Friday night dinner)

After dinner my brother taught us a card game called euchre.  It was incredibly fun. It takes four people to play and you play in teams of two.  It's a little bit like pinochle but a bit different.  So since my parents and Jake have played pinochle before it was easier for them to learn it but I've never played pinochle so it took me a few trials and games before I started to really get it.  It's an awesome game.

Soon it was dark and we decided to stop cards and just sit around the campfire, chat and look at the stars.  That's my favorite part, sitting around the campfire.  Eventually we all retired to sleep our first night in the tent trailer.  And we slept great.  It was really quite comfortable.  And cozy!  The first night, though, my Morgan got us up cause she had to potty so we all ended up getting up and taking the dogs out to potty and potty ourselves.  But we resettled in and slept in till about 7 AM.  

Saturday morning we got up and got a fire going and the coffee started right away.  Having coffee by the fire in the morning is also a favorite part of camping of mine.  For breakfast we had pumpkin rolls that we pre-made at home and fried up sausages and hashbrown patties.  It was a pretty good breakfast!  After we cleaned up after breakfast we started in on euchre again and played a few hands.  Dad and I were on a team and were unbeatable!  Jake and mom couldn't beat us!  It was great fun.

(Playing euchre Saturday morning)

After we played a few rounds of the card game, Jake and I decided to go on the hike to Hoffer Lake.  Jake has hiked it several times but I never have.  It's not a very long hike but it's a very difficult hike.  Most of the hike is very, VERY steep.  I wasn't sure if I would go cause I have my shoulder that starts to hurt really bad when exerted (even when resting) plus I have a very weak right leg from when they did the free flap surgery on my leg for my neck release.  Not to mention I'm not in the best shape right now.  But I wanted to go do something with my dear big brother so I decided I'd try.  Jake was very sweet and said any time I wanted to stop and go back we could.  There was no problem with that.  It was up to me how I felt.  So we put on our matching bandannas and headed out.


 (A little stream followed along most of the trail)

 (Towards the top the stream opens up into a little pond)

 (Hard to tell from this picture just how steep this is, but this is what most of the trail looked like)

 (Hoffer Lake, elevation - 7472ft)

 (Hoffer Lake)

(I made it!!!)

The hike was incredibly difficult for me but I didn't want to give up and turn back so I slowly but surely made my way to the top with the sweet help of my big brother.  I did it!!!  I was so proud of myself.  And it was fun spending some time alone with Jakey.  We had a lot of fun doing that together. 

We got back around dinner time.  I was exhausted.  My legs felt like jelly and my shoulder was hurtin' for certain.  For dinner Saturday night, dad and Jake had stew while mom and I had turkey chili.  It tasted pretty good.  After dinner we played some more euchre then ended up by the campfire again when it got dark, looking up at the stars in the big night sky.

 (Everyone looking at the stars.  I love this picture)

 (Roasting twinkies over the camp fire)

Sunday was our last day of all of us camping together cause Jake had to work Monday.  So we got up a little earlier than Saturday and had some coffee by the camp fire again.  Dad wanted to try doing some fishing so he went down that morning to see if he could catch anything.  Jake met up with him after a cup of coffee.  So mom and I hung out around the campfire while they were down fishing.  We timed it so we would have breakfast about the time they said they'd be back.  

 (Mom cooking some bacon over the outside grill)

(Mom cooking scrambled eggs)

Dad came back with one fish.  Not much was biting.  After breakfast we played another couple rounds of euchre only this time dad and I's winning streak ended and Jake and mom won both games.  After those two games, Jake needed to pack up and head home.  It was sad that he had to leave.  After he left in the early afternoon, dad decided to go back down and try to fish again so mom and I stayed and read outside while he was gone.  After a couple hours he came back with one more fish.  Again, not a lot of bites.  So he cleaned up the fish and fried 'em up for an afternoon snack.

(Dad and his fish)

Before dinner, we decided to take a little walk down by the lake.  I took Morgan, mom took Opal and Pearl, and dad took Buddy.  It was an overcast day but still beautiful.  

 (Anthony Lakes)

 (Gunsight Mountain)

 (Mom and I out by the lake)

(Dad, me and mom at the lake)

Later, once again, only without Jake, we were gathered around the campfire.  Our last night.  It was an incredible weekend.  It felt so good to get out of the house and do some camping.  It was like I got to take a few days off from my struggles and worries.  

Sunday, August 18, 2013

My Best Friend's Baby Shower

Yesterday I had to face my people fears again as it was my best friend's baby shower.  I'd had mixed feelings about it all week - nervous yet excited.  Nervous to be around all those people but excited to see my best friend of 26 years.  As days got closer and closer, I got more and more nervous but excited, too.  My mom was also coming so I wouldn't be totally alone.  And when I got there I immediately saw Corrie and gave her a hug, touched her belly.  It was so good to see her and I calmed down a little bit.  I said hi to a couple other old friends of mine from back in the day when I lived in Baker and then mom and I found a seat at a table.  We had a little bit of food and I did my best to chat confidently with the others at our table.  The most awkward question that was asked of me twice was, "And where do you work, Sarah?"  To which I have an awkward reply of, "I'm a burn survivor and am disabled so I don't work at the moment."  Ugh...

Then Corrie began the long process of  opening presents as it was a relatively big shower and thus lots of gifts to open.  My mother and I made a little baby blanket for her and she seemed to like it very much.  I have another gift to give her but it will be given later after they have picked out a name for their baby boy.  My shoulder began to hurt towards the middle but I washed down some tylenol and made it through to the end without having to leave early.  I wanted to be there for the whole thing for my best friend.  I didn't get to see her much.  Some in the beginning and then after she had opened all the presents I got to talk to her privately for a little bit before we left.  It was so good to see her and she looked stunning with her cute baby bump.  It felt good to be able to have conquered my fears of being at that party so I could support my best friend.  She's so important to me.  I love you, Cor.

Thursday, August 15, 2013


My therapist suggested a wonderful idea to me.  She was surprised at herself that she didn't think of it sooner.  See, I'm in a sticky situation with having to stay where I'm at for insurance purposes and being in the middle of surgeries and recovery still and wanting to go back to school to get my doctorate because no accredited schools offer online courses.  So I'm stuck in this situation.  Many have suggested to me to just take some online courses to have something to do but that's an expensive side project.  Well, there's a solution:  edX

EdX is absolutely 100% free online schooling from some of the best schools in the nation: Harvard, Berkeley, MIT, etc.  You can take a class with thousands of students from all over the world and interact with them.  Classes are fun but they are also very rigorous.  This is no cake walk.  But you get higher education and you learn from the best.  You also make friends from all over the world.  Registration takes seconds and as soon as you've registered, you just go through all the different courses and pick.  Some courses take 12 weeks, some 16, some 17, etc. and there may be prerequisites for some courses.  But for the most part, there are none.  It is all self-paced learning.  It's on your time and accessible 24/7.  At the end of the course, if you pass, you receive a certificate of mastery in the subject you took and in some jobs, that certificate from an edX program is better than a Masters degree.  Yes, seriously.  You may say, there's no such thing as a free lunch.  Well, let me assure you, this is a free lunch. This is all about the students and learning.  I'm not being naive about this.  I have looked through the website and have a first hand account of someone who has gone through an edX course.  There are no smoke screens.  It's the real deal.  The president of edX was even featured on the Colbert Report.  You can see that interview HERE.  Also you can learn more about edX from their website by going HERE.

So, I think I'm going to get involved in this for three reasons: 1) to give me something to do, 2) Work my brain because if you don't use it, you lose it and 3) It could help me with scholarships and getting admitted into a doctorate program later.  I've already picked out my first course: Fundamentals of Neuroscience Part 1 from Harvardx.  It's a three part course but you don't have to take all three.  You take what you want.  But unfortunately it doesn't start until October so I have to wait.  There are so many other classes I want to take but the courses are going to be challenging so I don't think it's wise to take more than one at a time right now until I know more of what to expect.  I'm really looking forward to this.

Sunday, August 4, 2013

Focus, Peripheral and Apartheids

I had quite an amazing therapy session this last week.  It was chalk full of insights that I have been thinking about still.  And I'm not sure if I'm going to be able to tell the session right, remember it right.  It was that kind of a session.

She talked about when she had her children.  She had both her kids in Florence, Italy, and there, at that time at least, there was no option for an epidural.  The primary concern was not helping ease her pain but the birth of a baby.  Her pain became peripheral, something that she would have to experience and go through but easing it was not the focus.  The baby was the focus.  She likened this to my depression.  Everyone always wants to cure my depression but what if it's not curable?  What if it's something I'm going to have to live with for the rest of my life?  Depression and anxiety isn't always something that can be fixed and cured.  Sometimes it's a lifelong battle that you have to learn to deal with.  If that's the case, it's more of making the depression and the anxiety my peripheral and living life my focus.  The depression and anxiety may always be passengers of my airplane of life but they do not have to internally hijack my mind all the time.  Learn to experience the pain of it all but not let it be the primary focus of my life.  Make them peripheral, not the focus.  If you make it out to be something to overcome and you don't overcome it, you just spiral deeper falling down the rabbit hole into a world of darker nothingness.  Maybe, if you don't make it something to overcome and make it the peripheral, making living life the focus, something magical might happen instead.

Ever since the beginning of college, I've been battling mental health.  Been on almost every medicine under the sun trying to be "cured" of it, trying to "overcome" it and so far I haven't.  Which is perhaps why I've never really gotten better.  Some times were better than others and when I look back on those times it was when I made my mental health situation the peripheral and made living my life the focus.  Like when I first moved to Portland, I was happy because I was living my life.  And you may say, well, change of scenery helped and new situation.  But, no, at the time I moved to Portland, I was in the middle of a very bad relationship that had me very upset and depressed.  And when I made the decision to move to NYC, I began living my life again, made living my life the focus despite having just ended a long standing relationship that really left me despaired.  But in those times, the depression didn't get me down, I learned to live with it and through it because I made it the peripheral and not the focus.  And being completely in despair over an ended relationship did not become my primary focus, living my life did which is why I made the decision to finally move to NYC like I had planned to do a long time ago.  And that was a magical happening for me.

We got on the subject of Nelson Mandela and you're probably wondering what the hell that has to do with anything.  Nelson Mandela relates to me in this way: the apartheid.  Nelson Mandela not only literally broke down apartheid in his country, but while he was in prison, he broke down an apartheid in his mind; an apartheid of right and wrong, good and bad, justice and injustice.  My therapist looked at my life in much the same way.  That maybe I need to find a way to break down the apartheid in my life; the life before I had my burn and the life I have now, who I was before I had the burn and who I am now.  Maybe I need to break all that down and see it all as simply my life.  No before and after the burn, just my life as it has turned out.  The burn, the accident, is a part of my life.  And who I was and who I am now is simply growth of myself and who I'm meant to be.  Maybe breaking down this apartheid of my accident is the secret to finding peace;  the peace I have longed for so desperately.  It won't be easy, but maybe this is the key.  I must break down my own apartheid and by doing so I will find my peace.  Life doesn't always turn out as you planned, but sometimes, what happens instead is the good stuff.

Wednesday, July 31, 2013

Trying to Pick Up and Keep Going

If I've learned anything from life, it's that sometimes the darkest times can bring us to the brightest places.  I've learned that the most toxic people can teach us the most important lessons;  that our most painful struggles can grant us the most necessary growth; and the most heartbreaking losses of friendship and love can make room for the most wonderful people.

I've learned that what seems like a curse in the moment can actually be a blessing, and that what seems like the end of the road is actually just the discovery that we are meant to travel down a different path.

I've learned that no matter how difficult things seem, there is always hope.  And I've learned that no matter how powerless we feel or how horrible things seem, we can't give up.

We have to keep going.  Even when it's scary, even when all of our strength seems gone, we have to keep picking ourselves back up and moving forward, because whatever we're battling in the moment, it will pass, and we will make it through.  We've made it this far.  We can make it through whatever comes next.

~Daniell Koepke

A dear friend of mine, whom just started out as a facebook friend with one thing in common - Jack White - has grown into a dear friend and as we speak more and more and learn more about each other, she is becoming even dearer to me.  We've been having chats that can get pretty long and take up an entire afternoon or morning but I don't mind on the time.  I really enjoy talking with her because she brings such light into my life and helps me to see things through a little differently or sometimes she's just there to help me get off whatever's on my mind.  She's learned a lot about me and I'm slowly learning a lot about her.  I knew she was an amazing woman but as I've gotten to know her better, I wasn't prepared for just how spectacular she is.  She is an angel to me.  And I am so lucky to have her in my life and so very lucky to have her as my friend.  She is a real, true friend.

This was posted on my wall yesterday and I thought it was amazing.  It fit me so well with what I'm going through, right now especially.  I'm in a very dark place right now and I'm trying to find the light in it all.  Hopefully I will find one of those bright places that this darkness can lead us to and with the help of my friends, family and my angels, I will pick up and keep going.

Thursday, July 25, 2013


I haven't written in some time because I haven't been well, physically, mentally and emotionally.  I've been battling some dark depression for the past few months.  And I've been battling health issues.  I went back to see the Orthopedist this past Monday and he gave me another cortisone shot but this time he put it right in the shoulder joint.  Last time he put it in the front of my shoulder where the tendon hooks into the shoulder joint.  But it didn't help me any so he decided to try it in the shoulder joint.  He said if it's going to help, I should notice a difference in the next couple days.  But it's Thursday now, and I'm not any better.  I'm supposed to follow up with him in three weeks again but I don't know what he's gonna want to do next since I asked him at my last appointment and his reply was, "Well, I'm hoping this is gonna work," referring to the cortisone shots.  So, I'm still in loads of pain and I still can't use my arm any better.

I also had a diabetic three month check-up appointment yesterday and it did not go very well either.  My A1C was 9.4.  9.4!!!!  That's insanely bad.  I've never had an A1C that bad before.  I was close once with 8.6 but never this high.  My jaw dropped to the floor when my doctor told me that.  She was shocked about it, too.  But when I told her I had been getting these cortisone shots, she was then not surprised that my A1C was that high.  Cortisone shots can raise your blood sugar quite drastically.  And my blood sugars have been very high lately.  But I never imagined my A1C would be as high as 9.4!!  So we did some adjustments and changes on my insulin pump. I also found out the name of my stomach problem that I have.  I don't know if you remember but maybe a year ago I was having problems keeping food down when I ate.  I would eat a meal and the food felt like it would just sit there in my stomach and then I would get nauseous and throw up my food.  This happened almost every meal.  So, I went to my PCP about it and he thought it was this disease that diabetics get but he could not think of what the disease was.  But he was pretty sure that was it so I got put on some medication for it and ever since then, I've been able to keep my food down and get it to digest.  Well, when I explained this to my endocrinologist at my diabetic check up she knew exactly what it was - Gastroparesis.  Gastroparesis, also called delayed gastric emptying, is a medical condition consisting of partial paralysis of the stomach (paresis).  This results in food remaining in the stomach for a longer time than normal.  The vagus nerve controls the contractions that gets the food to move down into the small intestine for digestion.  Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not work properly, so thus food moves slowly or stops moving through the digestive tract.  So now I have a name to this disease I have had for awhile.  Just seems to go along with everything about my body not working or healing properly.

In other news, I've been battling some heavy depression, which is why I haven't been writing.  I just have no interest in anything.  I'm bored all day long but I have no interest in doing anything that I have interests in.  Not to mention the problem with my shoulder keeps me from doing many of those interests as well because either I can't do it with the limited movement I have with my arm or I'm in too much pain.  So then I just fall deeper into depression.  It's a viscous cycle and I can't find my way out.  I hadn't gone to therapy for quite some time, several months, and I finally got back into it last week.  I go again tomorrow.  Then there's some other health issues that I may be dealing with that has got me down.  I can't get into it yet, not until I know more but, it could be another major health issue for me.  So, I'm also dealing with that.

I don't know how to climb out of this, how to help myself.  I'm so tired of feeling this way but it's not something that is easily fixed.  I've got so much going on with my health and thus so much going on in my head about it.  I wish I could just have a British stiff upper lip but that's not who I am.  I feel and I feel deeply.  I get caught up in it, lost in it.  I don't know how to bury my emotions and just slap a smile on my face.  That's not to say I go about my days overly expressing my emotions.  Most of the time I'm quiet about what I'm feeling even though I'm feeling it so deeply that my heart hurts with it.  My therapist said something in my session last week that resonated with me.  She said she wonders how long I'm gonna put up with my life until I do something about it.  Until I pull up anchor and go after what I want.  I think I'm ready to pull up anchor any time, but there are a few things that aren't allowing me to pull up anchor yet, like surgeries yet to be done and needing a lot of care.  I know my anchor will be down for at least another year but I know there are still things I could try to figure out to do until I am able to pull up anchor.  It's not about being ready to pull up my anchor because I think I'm ready.  It's about things that are not yet allowing me to pull up anchor and move on.  I've gotta make the best out of my position right now.  But being in a heavy depression halts that development.  So, I guess I got some things to work on.

Tuesday, July 9, 2013

Happy 38th Birthday, Jack!!


Today is my love's birthday.  Jack White was born John Anthony Gillis July 9th, 1975, the youngest of ten children of Teresa and Gorman Gillis.  His first instrument was the drums at the age of six and since then he has never stopped learning instruments, learning music and writing music.  He is truly an amazing musician and my favorite musician ever, since the first time I heard De Stijl.  I was immediately in love with him and his music.  His music has gotten me through some incredibly tough times in my life, especially now.  I can spin a record of his and have wet tears on my face from the time I put the needle down on the record, lay down and close my eyes and listen to his music and by the time the needs runs out of music to play, the tears have dried.  I forget my pain and anguish for the time being that his music fills up my world and I get lost in it.  He has that power over me and my pain.  He helps heal me.  Thank you, Jack, for being you.  For being brave to be who you are and giving me and millions of us your gift.  You mean so much to me.  Thank you for all that you do.  Happy 38th birthday, Jack.  

Tuesday, July 2, 2013

Orthopedic Appointment Results

I had my doctor appointment with the Orthopedist yesterday and I think I finally got an answer and possible solution.  After doing some x-rays, talking to me about what was wrong, going through both my MRI's and then doing some tests on my arm and shoulder he concluded that he believes what is really happening is Biceps Tendonitis.  The bursitis that showed up on the MRI is just a side effect of the biceps tendonitis.  He explained to me what this is.  Biceps tendonitis is an inflammation or irritation of the upper biceps tendon.  This tendon, which is a strong, chord-like structure, connects the upper end of the biceps muscle to the bone in the shoulder.  Symptoms of biceps tendonitis include pain in the front of the shoulder and weakness.  Both of which, I have.

(Normal Shoulder Anatomy)

(Anatomy of Biceps Tendonitis)

I asked several questions, one of which was how this could have happened and he said that during the surgery, my arm may have been placed out in a position that pulled on the biceps tendon.  Another question I asked was I knew bursitis could cause severe pain but what about this biceps tendonitis and he said, "Oh yes, it can cause quite severe pain."  So then we discussed treatment.  The biggest thing is rest.  Then there's cortisone shots which can relieve pain and help it to heal.  However, care must be taken with cortisone shots cause in some cases steroid injections, like cortisone, can further weaken the already injured tendon.  He said, often in the first 24 hours after the cortisone shot, the pain can get much worse before it gets better.  I am definitely experiencing the "worse before it gets better," cause I hurt much worse than usual.  He also said patients sometimes see immediate effects but so far I can lift my arm no higher nor move it any easier than before the cortisone shot.  But it may take a few days before you start to see results.  In some rare circumstances, surgery is required to repair the tendon and strengthen where it attaches to the shoulder socket.  With my case history of my body being difficult to heal, I have a horrible feeling I'm going to be one of those rare circumstances.  We'll see how the next few days go.  I have a follow up appointment in three weeks.  But my mind is resting easier now that I have a more likely answer to my problem, an answer that makes sense with possible solutions to fix it.  I just hope the solution will be the easier of them all with the cortisone shot and rest.  

Thursday, June 27, 2013

The Mirror

Never trust a mirror,
For a mirror always lies,
It makes you think that all you're worth,
Can be seen from the outside,
Never trust a mirror.

It only shows you what's skin deep,
You can't see how your eyelids flutter,
When you're drifting off to sleep,
It doesn't show you what the world sees,
When you're only being you,
Or how your eyes light up,
When you're loving what you do,
It doesn't capture when you're smiling,
When no one else can see,
And your reflection cannot tell you,
Everything you mean to me,
Never trust a mirror,
For it only shows your skin,
And if you think that dictates your worth,
It's time you looked within.

~Erin Hanson

Someone posted this on a burn survivor page I'm in on facebook today and I remember reading it a long time ago but when I read it again today, I felt a different feeling towards it.  It can connect to so many readers who don't like what they see in the mirror but I think it really connects to people who have been physically damaged, disfigured.  And the reason I say that is because I know personally, from being physically damaged, disfigured and marred with scars and when I look in the mirror, I don't recognize myself from the girl I was physically before the burn.  It's hard to see anything but the my disfigurement and scars when I look in the mirror now.  The scars and disfigurement are so powerful that I can't see beyond the physical in the mirror to what's deeper.  It's so powerful that it's overwhelming and I avoid mirrors at all costs because I feel like me on the inside, but when I look in a mirror, I don't see me anymore.  I'm conflicted with what the mirror shows me and what I feel on the inside.  And so, it is quite fitting when Hanson says that a mirror only makes you think that all you're worth is seen on from the outside.  That's what I feel and see when I look in the mirror.  I see ugly.  I see someone who will never be loved by another.  I see failure.  And because what I see is so powerful, it can make me feel it, too.  Right now, unfortunately, I do trust that mirror.  I trust it and I believe it.  I don't yet trust and believe the better things I feel inside.  Trusting and believing those things weigh me down and like Marilyn Monroe once said, the bad are much heavier to carry.  I need to perhaps read this every day so that maybe I'll start believing in the good things inside me that you can't see in the mirror.  I need to believe that the mirror only shows my skin and not what I'm worth.  I'm just not there yet.  I hope I am someday, though.  I'm tired of being weighed down by negative thoughts and images of myself.  I want to someday look in the mirror and see what I feel on the inside and, most of all, believe it.

Wednesday, June 19, 2013

Second MRI Results Are In

The doctor just called me about my second MRI results.  Well, his nurse called, actually.  She informed me that the edema in the humeral head has resolved but, bursitis has showed up.  Which, makes sense cause bursitis is very painful and I have been in a lot of pain.  I know bursitis is painful because I had it in my ankles in high school when I was playing volleyball.  It hurts like hell.  And anyone who has had bursitis in any joint will agree to that testimony.

In case you don't know or have only a vague understanding of what bursitis is, I'll help you to understand better.  A bursa is a fluid filled sac, that functions as a gliding surface to reduce friction between tissues of the body.  There are over 100 bursa sacs in the body but the major ones are located near the larger joints such as the shoulders, elbows, hips, and knees.  Bursitis is inflammation of a bursa sac and it can be caused from injury, infection, or an underlying rheumatic condition.  In my case, shoulder bursitis causes "focal tenderness" of the inflamed tissues and can also cause a "pinching" pain when the elbow is moved away from the body.

I get both of those types of pain so bursitis is making sense for answer to my shoulder problem.  However, my PCP is not sure how this relates to the problem of me not being able to raise my arm so they are sending over a referral to an Orthopedist here to work on that problem as well as the treatment of the bursitis, which can involve aspiration of the bursa fluid and/or cortisone shots.  The treatment can get much more complicated if the bursa fluid is infected so that will have to be determined as well.

Luckily, the outlook for bursitis is good unless it is accompanied by scarring around the shoulder joint and then it requires long term physical therapy which, I'm worried about because I just had surgery in my shoulder area so there could very likely be scarring.

So, I have a possible answer to the pain and treatments so I am relieved at this bit of news.  But we'll see what the Orthopedist has to say to the not-being-able-to-raise-my-arm problem, if I also have an infection, and then what kind of treatment we will proceed with.  Let's hope it's not infected and that the second part of my problem will have an answer and solution soon as well.  Getting closer but more needs to be determined.

Sunday, June 16, 2013

Too Much Pain

I haven't written much lately cause things have been tough and I haven't felt well for a long time.  My shoulder has been the main source of pain but I've had a couple new pains.  Well, one was an old pain that went away and has now returned, which is the feeling of my skin being pulled tight in opposite directions.  It's very uncomfortable.  The other thing is I think I'm starting to get migraines.  I get most of the symptoms but I've never had real problems with headaches and never a migraine.  I also have experienced a few of the triggers that can cause a migraine on the days that I've experienced this horrible headache pain.  I don't know.  Something I need to see my doctor about.  I also had a frenectomy done last Monday and my goodness it has caused me a great deal of pain.  I didn't think it would hurt like it does or last as long as the pain has.  It's been a week, and I'm still in pain from it.  It hurts to eat, hurts to talk, and just hurts to sit here typing.  I know this pain will go away but, man it's been incredibly bothersome.

So I've been spending a great deal of my days, uncomfortable and in pain, feeling awful.  And for too long now.  I had a second MRI done on my shoulder this last Friday.  I hope nothing terrible shows up but it's at the point now, almost four months since the pain and inability to lift my arm and use it started, that I'd be OK if something bad did show up this time as long as there was an answer to why this is happening and a possible solution to fix it.  That's how bad this shoulder problem is, that I would be OK with bad news.  She said a radiologist would read it that day and would get the results to my doctor within 24-48 working hours so I hope to hear something by Tuesday.  Having the MRI was uncomfortable so it made my pain worse.  This weekend has been extremely rough with everything.  I've just been lying down, often with a cool cloth over my eyes, taking pain meds, off the computer, alternating between icing and putting a warm rice bag on my shoulder, and doing a whole lot of nothing.

It is Father's Day today.  I gave my pops a card and a small present this morning.  I think he's enjoying his day today.  Despite any arguments we have, he is still my daddy and I love him.  Thanks, Daddy, for all that you've done and do to make my world better.

(My dad and me at the top of The Rock in NYC)

Tuesday, June 4, 2013

Finally Heard From G

I had a bad weekend that followed into Monday.  I was having great pain from my shoulder and then my whole body just hurt.  My skin and especially my legs just hurt.  Bad.  Hurt so bad I had to retire to bed around 7:30 PM.  I woke up this morning, late, and it's not as severe but my whole body and shoulder just hurt.  My legs feel like they ran a marathon and my skin hurts everywhere I'm grafted like it's pulling so tight.  Not to even mention my shoulder.  But speaking of my shoulder, yesterday I sent off a little bit of a stern email to G because my physical therapy is put on hold until my doctors chime in on what to do next since I'm not making any progress.  I haven't heard from G in three months so it was time he got in on this.  So I sent off the stern email telling him of my non-progress and that I'm still in a lot of pain and no one knows what's going on and that I'd really like to hear from him.  I knew I wouldn't hear from him on Monday cause he's in surgeries on Mondays and Fridays but I hoped to hear from him today, which, I did.  I got a little nervous opening up the email cause I thought maybe he'd get mad or be distant but he apologized and said he would refer me to an orthopedist asap and see if they would have any answers for us.  I don't know if he's referring me to someone here in LG or in Portland but I guess we'll see.  Hopefully I'll get a call here soon for an appointment with an Orthopedist and maybe get some kind of answer or another piece to the puzzle, hopefully an answer.

I also go to see my PCP tomorrow.  Let him know what's going on and also to talk about my anemia and talk about some new pain meds cause what I'm on right now just isn't doing it at all.  I'm too, too tolerant to it.

I hope I hear from an Orthopedist soon.  In the meantime, I'm still waiting, still in pain and can't raise my arm.

Friday, May 31, 2013

No Progress in Physical Therapy

So, physical therapy may be put on hold for awhile.  I have been going to physical therapy for about a month or maybe a little longer, and there has been no improvement.  My physical therapist said there should be some kind of improvement by now.  She has tried getting ahold of G to talk to him but he has been difficult to get a hold of.  After she talks to G she's also going to talk to my PCP.  But since there hasn't been any improvement, she wondered if I wanted to put it on hold for awhile until she was able to talk to my doctors and possibly get another MRI done.  She also said that the results of my MRI are like nothing she's ever seen and when she talked to the Radiologist who read my MRI, he said the same thing.  So there is something very weird going on here.  I don't know if something happened during surgery that G is not aware of or what cause it has just happened since my surgery.  I'm extremely frustrated.  I've been frustrated for two out of the three months this has been going on but now I'm really over it.  Tired of not being able to use my arm, tired of no answers, and tired of the pain.  This is getting ridiculous.

The pain this time is different to handle because with pain with surgeries, I know what's causing the pain and I know it will end eventually because it always does.  But this time, this time I don't know what's causing it and because I don't know what's causing it I don't know when it will ever end!  If something went wrong in surgery whether G knew about it or not, I'm not going to sue anyone!  I get the feeling that they're afraid of that.  I just want answers and I want it fixed.  I want someone to give a damn about it.

Wednesday, May 22, 2013

A Rook Piercing And A Graduation

Well, I had a very busy weekend!  One of my older brothers, Jake, graduated with his doctorate degree in Pharmacy.  So proud of him!!  It was a really grand weekend.

We left to Portland Thursday morning and got to our hotel that was really more like a little apartment complex.  Pretty darn cute.  Didn't feel like we were in a hotel at all.  Jake met us at the hotel not long after and a little later we were back in the car heading to Forest Grove for his Hooding Ceremony.  This is the ceremony where all the doctoral graduates receive their Hood for their doctorate degree.  They aren't allowed to wear it till the graduation ceremony because they haven't actually graduated yet so therefore they are not a doctor so they just hold them.  They get to wear them when they have actually graduated.  But it was very exciting to see him receive his Hood.  We screamed and yelled when his name was called to cross the stage to receive his Hood.

(Jake with the Dean after receiving his Hood)

That was Thursday, May 16th.  Then we had Friday all open to do anything before his graduation on Saturday, May 18th.  So we lazily got up Friday morning and got ready to go have breakfast with our soon to be graduate and doctor.  We had a really good breakfast at a little place called Biscuits, which had delicious food, and over breakfast we got to talking, half serious, about us all getting a family tattoo.  As we thought about what we would get for our family tattoo, I got an idea to go get the rook of my ear pierced again.  I got it a long time ago with one of my best friends back in the day but of course when I had my accident they took out ALL my piercings so I lost it.  But since then I've gotten my nose piercing back and I thought I wouldn't be having any surgeries soon because I think my burn surgeon wants to get my shoulder fixed up before we do any more reconstruction work so I thought this was a good time to do it.  So, on a total whim, right after breakfast we went over to the tattoo place where my brother got one of his greatest and best tattoos and he said they were good.  But when we went over there they said the woman who does the piercing wasn't in yet but would be in in another hour or so.  So, we went back to the hotel and relaxed awhile, had some lunch from Subway and made plans to go get my rook pierced and then go to Cinetopia Cinemas to see Star Trek: Into Darkness.  We had some lunch and headed out to Tattoo 42 to get my rook pierced.  I was stoked.  The woman was in that did the piercing and I got in right away.  She took me to a little room off the side of the entrance where I told her I had had this pierced before and that I was a burn survivor which is why I no longer had it.  She said she could see a tiny scar where it once was but just barely.  She marked my rook and asked me to take a look and see if it looked OK.  It did so, I laid down and she did some last minute preparation, then asked me if I was ready.  When I told her I was, she asked me to take a deep breath in and release it and when I released it she pushed the needle through.  It was just as I remembered it feeling like.  No real pain cause it's pure cartilage in the rook.  More of intense pushing and intense pressure.  It has to go through two parts of cartilage so it's not a real quick piercing, it takes maybe 3 good seconds.  But she did a great job with it.  I was very happy with how she pierced it and how it looked.  And I was very happy to have it back.  I feel like I'm very slowly putting myself back together.  Next I'm thinking my belly button :)  Also another tattoo :)  Yeah.

Saturday morning rolls around and it's the day of graduation for my brother.  And it's raining.  We take a look on to see the forecast for the afternoon and looking at the hourly forecast it just says it's going to be cloudy during the hours of the graduation, no rain.  But, of course, it rained and rained hard all during the graduation ceremony.  We huddled under umbrellas but we still got pretty wet.

(Mum and I huddled underneath an umbrella at graduation)

The graduates were led in by a bagpiper and drummer.  When we saw Jake at the end of the line we were so excited and we screamed and yelled again.  He heard us cause he looked up and waved.  They actually hurried things along pretty well so it seemed we were at the announcing of the graduates to be hooded and receive their doctorate diplomas in no time.  When Jake's name was called, and I watched him get hooded and receive his doctorate, my heart swelled with happiness and pride for him.  He worked so hard and for a long time to get this.  I couldn't help the huge grin in my heart and on my face.  We are all mighty proud of him for what he's accomplished.

We went out for a celebratory dinner afterwards with him at this great little local grill that just happened to be having live, local music by a guy named Matthew Gailey.  The food was incredible and the entertainment was kick-ass.  So much so, that after we were done eating and paid the bill, we went up to Mr. Gailey and his guitar player and talked to them for a short while.  I also bought one of his CD's.  It was a grand ending to a grand weekend.  Congratulations, Jake.  I'm proud of you.

Friday, May 10, 2013

Releasing In Order To Heal

This resonates hugely with me.  I actually wrote a post on releasing the past not too long ago.  But I have recently realized that there are some other things I need to release and this quote put that realization into practice. 
I am still learning to release my past.  I know I need more work on it but I'm trying.  Sometimes though I may think I'm doing well and then it creeps up on me like the silent stalking of a cat to a bird.  I'm the bird and my past is the cat.  But I think an important realization I had was releasing any attachment I have to my current situation as well as releasing the identity I've become too comfortable with.  I've never really looked at it like that. 
Releasing myself from any attachment to my current situation is a tough one because I'm constantly reminded of my situation.  I'm often in surgery, sometimes more than often, which then puts me in almost constant recovery.  I am constantly reminded with my pain and the suffering my accident has created.  But here's the lightbulb, the key word - attachment.  I may be reminded of my situation constantly because of surgeries, pain, recovery, complications and suffering as a result of all of those things but I can release myself of my attachment to my current situation. 
I really need to release a few people who I thought were my friends but really aren't.  They once were but have not shown any care for me, any interest in a very long time.  For some reason it is as if I'm being treated like an ex-boyfriend by some, and by others, someone of no value or interesting or worthwhile.  Even probably by some as feeling sorry for myself or dragging out my accident for too long, like I should just "be over it by now" which, by the way, really angers me.  One friend has actually told me he/she just couldn't be there for me right now because he/she had too much going on in his/her life.  Then I constantly see him/her out with friends in pictures he/she posts and posts made by his/her friends about what fun they had together.  I also see him/her involved in many projects out in the community but somehow he/she just doesn't have the time to be there for me.  It really hurts.  These friends, who shall always remain nameless because I'm not out to expose them for being bad people cause they aren't, they just are not good friends to me because they hurt me and hurt me some more and punch me in the gut for having once been dear friends of mine that I thought would always be my friend, maybe not as close a friend as we were, but at least care for me and what I'm going through like any friend would or even SHOULD.  One of these friends once told me that a friendship goes both ways.  I agree.  EXCEPT in exceptional situations where one of the friends may withdraw due to some kind of trauma and may need help so the other friend may have to put in a little more effort and carry more of the load.  So it may become more of a one way friendship for awhile because that's just how it happens when a friend is having a hard time and withdrawing.  The other friend needs to reach out to this friend, a friend like myself, to help them through their struggles and it may take awhile on what has now become a one way friendship but a real, true friend won't mind because they care and love the friend.  And soon, that friend who is struggling will come out of it and it will become a two way friendship once again.  And one day, the other friend who was helping the friend in need, may come to find themself in a struggling situation and will find themselves withdrawing like the other friend did and will be in need of the same help they once gave.  And a real, true friend will carry that burden of a one way friendship because they understand and truly love and care for their friend who once did the same for them.  Most the time a friendship should always be a two way street, but sometimes, one of those friends may come to struggle with something and it becomes a one way friendship for a little while.  But real, true friends shouldn't care when it becomes that one way street in their friendship.  I am such a friend who is struggling and have found out who my real, true friends are.  Many of my friendships before the accident have disolved, amost as if we were never the best of friends.  And that is painful for me.  But a few of my friendships before the accident have gotten stronger and I have been so thankful for such friends who have stuck around to support and love me.  There are also some friendships I have now that were made post-accident and they are some of the best friends I've ever had.  They don't mind if our friendship may be one way sometimes because they really truly care for and support me.  They understand that because my life has been turned upside down and so much has been taken from me that our friendship may go in and out of a two way friendship because I've been through such a trauma and am really struggling.  And I care for and love them deeply.  I hold them near and dear to my heart for what they do for me, the understanding and patience they give me, the support and awesome friendship they give me.  But those other friends that are really not my friends anymore still hurt me for their non-friendship and non-understanding of what I'm going through.  And those friends are the ones I need to release because they only hinder my healing instead of helping to progress it.  But I have found it to be harder than it seems because they were once my friend.  It's like breaking up and breaking up is hard to do. 
I do have a wonderful church family, even though I don't attend regularly.  Despite my absence in church, they pray for me every Sunday and help out me and my family whenever they can and for them I am truly thankful.
To help progress my healing further I also need to release the identity I've become too comfortable with.  And I'm not talking about the releasing the identity of being a burn survivor because that's acceptance and healthy.  I'm talking about the identity of being a trauma victim and the identity of someone who is ugly and scarred and never going to find love.  I need to release the identity of being a trauma victim and be a survivor.  I went through a trauma but being the victim of that trauma is not who I am.  I am a SURVIVOR.  I not only survived a trauma I should not have survived but I am surviving my daily struggles.  There are days when I really do want to give up but so far I haven't.  So I continue to survive every day as I make it through the struggles of the day and wake up the next morning to do it all over again.  And as for releasing my identity of someone who is ugly and never going to find love, that is going to be one of the hardest challenges of all but a challenge that is desperately needed to overcome for my healing to REALLY begin.  A dear friend of mine posted this to me yesterday on my facebook page and it really speaks to this challenge:
Not only do I need to solely identify myself as a survivor and not a trauma victim, but also as a beautiful person because I have known defeat, known suffering, struggle and loss.  "Beautiful people do not just happen."  Beautiful people are created by knowing these hardships and finding their way out of the depths.  This is something that if I can learn to identify with, I think my healing would really take off.