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Tuesday, February 25, 2014

Long Over-Due Update

WOW, my life has exploded with medical problems...and thus I have been running around like crazy and stressed, so I have had to post-pone an update until now.  Don't worry...I didn't just go back to life and forget about my blog...I thought about it a lot actually, but was unable to get it together and update.  I felt badly that some people that have been following my posts might have thought I just moved on, but rest assured, that was not the case, and is still not the case.  In fact, since I am moving forward with jaw surgery for my hemifacial microsomia (which is related to Microtia and Atresia), I plan to just transition into posting about that experience as well as it moves along.

So, tomorrow marks 12 weeks post-op!  I am going to transition to taking my photos on Sundays, since that's also the day I have to take them when I send them to Dr. Griffiths once a month.  But for this week, I had already made up some collages from last Wednesday as well.  But first, here's what has gone on since I last posted:

1) I have decided I will move forward with jaw surgery to lengthen the right side of my lower jaw bone because it is becoming increasingly painful and is really starting to limit my food choices.  I have done more research and talked to some people that have had it done, and I think having it done will be best.  I had molds and x-rays taken yesterday, and have a CT scan this Friday.  After that, we will know if I need braces, and if so, for how long.  Then the fun part of getting prior authorization for it all...I just got approved for Medicaid, but luckily the hospital I see most of my doctors through knows how to work well with Medicaid and will do all that for me.

2) I received notice that my SSI (Supplemental Security Income - need-based disability income) was approved.  I applied in July 2013, so thankfully I did not have a long wait.  I feel extremely lucky, but it's bittersweet, since that means the government really felt I actually am too disabled to work due to my mental issues.  Basically, I look and act normal most of the time - at least outwardly - but it takes me all my concentration to keep my brain and thoughts and behaviors coming out that way.  If I try to do too much, then all hell breaks lose because I can't work/do too much AND keep my mental illnesses in check.  Luckily, I can at least do one of those...so I can not be a crazy lunatic all the time and enjoy life still :)  I know I have not really mentioned this piece of my medical problems on this blog before, and I don't plan on divulging much in terms of specifics unless I am asked privately, but it is an important, and very LARGE piece of my life, so I feel it deserves mention since it's having a big influence on my whole being right now.

3) I figured out what was causing my stomach pain, and thank GOODNESS, besides the hematoma (which is now gone), it is NOT directly related to surgery.  It has delayed my healing some, but that is not related to anything Dr. Griffiths or I did following surgery...except maybe my coughing fit, but no one could have predicted that, and they got it under control ASAP.  Basically, I have been on antidepressants since 5th grade (and here's where it might be helpful that I shared number 2 on this list).  Since then, I have had quite a few traumatic events happen, both emotional and physical.  I had a lot of emotional stress last spring and through the summer, and then in August starting having 5-7 day bouts of what we called a 'stomach flu'.  I would be so tired I didn't want to move any muscles, my whole body hurt, and I was nauseous.  I never threw up, had a fever, runny nose, etc.  Well, after surgery, these bouts got worse and closer together.  Since the summer I have been having other weird things happen (I can't remember common words, my hands are really cold, etc...things that are not typical for me, but alone didn't really cause any red flags).  So, in January, when we started Metformin for my insulin resistance and I suddenly had more energy and felt better overall, we were ecstatic.  We decreased some of my psych meds.  That is where we went wrong. Those medications take about 1-2 weeks to get out of your system.  About 1 and a half weeks after the decrease is when I noticed my stomach pain was coming back and getting really bad.  By 2 weeks, I needed prescription pain killers to help the pain, the pain was spreading all over my body, and was moving around.  Yes, the rib area on the right was the worst, but everywhere hurt.  Then, I got extremely fatigued again and nauseous.  During that time, I had mentioned to my physician that maybe my 'stomach flu' was something like fibromyalgia.  We had decided to just keep an eye on it since it had barely been 6 months since I had started having those episodes and since I was coming out of a rough mental patch, it could just be that.  When my rib x-ray came back normal, and then my ultrasound and bloodwork did as well.  I called off the search (unless my Doctor's could think of a reason post-op complications would still be a concern for wide-spread pain, etc.).  The pain increased because the psych med we decreased is also used to treat fibromyalgia pain!  We reinstated it last Sunday, and I have already seen a little improvement in my pain...I still need a lot of pain medication, but a lot less than a week ago!  I have an appointment with my physician next Monday to discuss other treatments for my fibromyalgia symptoms.  So, not only have I been in a lot of pain, but I have been so darn exhausted, there is no way I could keep up with anything that wasn't 100% necessary...thus my lack of updates on this blog.

4) Starting at the beginning of February, I have started regaining feeling in my new ear!!!  One evening I noticed I could feel that a cream I had just dabbed on that earlobe was cold, but I still couldn't feel touch.  By morning I had feeling back in the whole earlobe!  The rest of the ear is still pretty much numb...but very very slowly, I am getting feeling back around the edges of the skin graft.  I figure that since this skin was grafted, unlike the earlobe which was just re-positioned, it will take longer to get back feeling.

5) My large scar on my right thigh crease gets dry, painful and itch A LOT!  I really rely on my silicone scar gel to keep the area from drying out so that it doesn't hurt or itch.  As long as I keep it moist, I don't feel a thing.  The other scars get this occasionally, but not as often or as badly.

6) The back of my left ear is looking really good FINALLY!!!  The skin graft has thinned out, and doesn't look so gross anymore.  It's still not all the same color/thickness, but at least it's not so thick and shiny.  BIG improvement.  It does itch though...and again that scar gel comes in handy...

7) I don't always wear something behind the new ear to bed at night because I found that no matter what I used, it created problems like increased swelling and/or irritated the earlobe portion of the ear. However, I might have caused a different problem, or it may just have happened on its own.  The upper rim was two pieces stitched together.  That stitch broke before the cartilage healed together (or maybe it never bonds...I'm fuzzy on those kinds of details...I have an email into Dr. Griffiths), and the upper piece isn't held down anymore, so it pushes out and up into the skin a little.  This causes the curve to be a little rugged there, and sometimes if I touch that area it's a bit tender.  I can also push on the end of the cartilage there and it moves back into place...so I'm not sure if there's some way to fix it or not...we'll see.

8)  I LOVE my ear.  Even despite some bumps, I would do it again.  I didn't expect a perfect procedure, recovery, ear, healing, etc. as that's just not possible.  Nothing is 100% perfect.  However, my ear continues to blow me away everyday!  The more the swelling subsides, the more I see how awesome it is.  I'm in love!  I am used to having it there and I like that.

That's plenty for one update!  Here's the photos:












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