willandadri.com

Sooooo such a confusing time.  My neurosurgeon says (via my PCP) that nothing will help the CSF leak and I must have surgery to repair it.  However my MIL’s DO says there is a 50/50 chance it will heal itself.  Google says that depending upon the circumstances most CSF leaks resolve themselves.  Hopefully my chances of not having to have another surgery are improving.  I would hate more than anything to have to go through that again simply because it would feel like the first surgery was a waste of time.  After all that we have been through I am not ready to do that again very soon.  I have also been very nervous the past few days since my neurosurgeon told me (again through my PCP) that there is no real danger associated with waiting and seeing what happens but that there is a risk that my symptoms could come back.  I think he jinxed me because for several days after that my neck has been very stiff and sore in the right neck muscle.  It has even limited my mobility looking to the right a bit so I was worried that they were indeed coming back.  But this morning I noted that the soreness was still here but not as bad and the stiffness is gone.  Also the lump has been gone for the majority of the day and when it was here it was much smaller than usual.  I am trying to stay positive and hoping this means the healing is coming along slowly and we are on the right track.

So I am back in good spirits after reading some of the stories at:

http://www.pressenter.com/~chip/success.htm

There are several success stories where people say that they had CSF leaks after the surgery and they healed after several months.  I have hope again!

So just got the call back from my PCP.  She spoke with the PA (and neurosurgeon via the PA).  At this point the neurosurgeon believes doing a head wrap would be pointless.  He told the doctor that I need surgery to repair the CSF leak.  Wonderful.  She specifically asked if there was any danger in waiting to see what happens (such as risk of infection, etc.).  He said there is not but he believes this will not be corrected without surgery and the putting it off increases the chances of my symptoms coming back and the headaches returning.  The good news is she said not to worry about the spinal tap because the results are normal for post-op patients. Sooooo she is giving me the referal to UNC to get a second opinion but based on her conversation with the neurosurgeon’s office it appears there is no alternative to surgery at this point because they have tried what they could and it didn’t work.  What a bummer!

So life has been hectic since my last post so put on your seat belt and hold on.

Spinal Tap

The bump on the back of my head was still alive and kicking at my follow up with the neurosurgeon.  The PA had previously told us that I had a CSF leak and it would need surgery to repair it.  So I was surprised when we arrived at the follow up and the neurosurgeon said there were things we could try to repair the leak without mentioning surgery.  I enthusiastically replied that I was willing to try anything if it prevented us from having surgery.  Unfortunately that something involved a spinal tap of which I was terrified based on the horror stories I had heard.  The theory was that he was going to do a spinal tap and draw some CSF off.  This would create low pressure which would cause the bump to go away.  Then my head would be wrapped tightly for two days allowing scar tissue to form which would seal the leak.  Well, after getting into a nice uncomforable position that required help for me to hold, the digging began.  After what seemed like forever and several failed attempts he gave up saying he didn’t want to torture me (too late).  He signed me up to come back the following day to have it done again with radiology with the hope that things would go more smoothly since they would be able to see what they were doing.  So the next day we get there and get the party started.  Let me tell you it is not a good feeling when the radiologist says “I have pulled 20 ccs many times.  I think I have even pulled 25 ccs a couple of times.  I don’t think I have ever pulled 30 ccs, that’s a lot.”  Then they go to town and it is the same situation all over again.  Lots of agony and no love.  Then they conclude there must be some sort of blockage that they can’t see and decide to go lower and try L3-L4 instead.  They must have decided to dose me up good so they can go for it because they shot some more Lidocaine in there before trying and it didn’t just burn, felt like my back is on fire.  It was totally worth it though because they hit the spot immediately like magic and I didn’t feel a thing.  I was even leaning up joking with the radiologists and a trainee they were instructing.  Apparently they struck gold because the radiologist exclaimed that I had high pressure and he could now understand why they ordered 30 ccs be drawn.  I overheard him telling the trainee that the CSF should be clear and was a little bit yellow and that they send it off to the lab for testing as a standard practice.  After asking about it he assured me that they would call if anything was wrong.  They wheeled me off to recovery to lie still on my back and be monitored for several hours.  I thought I recognized the song playing in the background and asked the nurse what radio station was playing.  She told me it was K-Love and we had a long conversation about our favorite Christian music and artists.  Then with several instructions about laying down flat, then elevating, etc. I was pushed out in a wheelchair and released into the wild.

Head Wrap

So I got to play partial mummy for several days to try and get rid of my bump and seal the leak.  Everybody kept saying it would be uncomfortable and may cause headaches but it really wasn’t bad.  I might start wearing it all the time as a fashion statement and start a new trend.  Except I won’t tuck the tips of my ears underneath the wrap because that is frustrating as nobody’s business.  Unfortunately my bump is infatuated and totally in love with me because when we pulled the wrap off it was there waiting to say hello.  Epic fail!

No More Drugs

At first I felt like I was not doing so well because I was still taking the narcotics and muscle relaxers for pain at 4 weeks out.  After my follow up I felt much better when the doctor told me that people took the medicine for an average of 4 – 6 weeks.  However, I had already severely scaled back by only taking half of my usual dose three times a day (instead of around the clock every 6 hours).  A couple of days later I completely stopped taking the narcotics but kept taking the muscle relaxer.  A couple days after that I stopped the muscle relaxer and haven’t looked back.  I now just take motrin whenever the headaches come and that seems to work.

Stupid Headaches

The headaches have come back 2 times but thankfully they are nothing like they used to be.  Instead they are more like pressure with a dull ache in the background.  They throbbed a couple of times but oddly it was behind my left ear rather than my temples like it has been.  To be honest each time it was probably my fault for pushing myself to hard because I still get winded very easily and am not used to doing too much physical stuff.  I am also still under restrictions and am not allowed to lift more than 10 pounds until the bump goes away (like that will ever happen).  I killed the headaches with 4 ibuprofin.

A Real Date

Finally finally finally a real date. I got to leave the house for real for the first time for a non medical or errand related reason.  We investigated the Dos Taquitos off Creedmor Road and were very pleased to find it was not like the one in Raleigh.  The theme was the same but it was a full sit down restaurant and bar.  They give you a stuffed animal or similar item and record the number in your party.  It is quite amusing hearing them call “4 baboons” or “2 Obama bobble heads” to seat people.  Once they called 2 dolphins it was our turn and we immediately secured some cheese dip (with Jalapenos) and started hitting the margaritas.  This was the best mexican food I have ever had.  I have a new regular place.  We both went home happy and lucky because the storm of the century hit right after we walked in the door.

Back to Work

I got the go ahead from the doctor to return to work last Thursday.  My work has been gracious enough to allow me to ease back in by working from home for a couple of weeks with a flexible schedule to allow me to take breaks if I start to overdo it.  This was a very good thing because I started work with only a few hours of leave left.  If I had to stay out longer I would have to solicit for leave (which would take a while do to the various approval and solicitation processes), go on short term disability which cuts my pay in half, or go on leave without pay.  None of these options is particularly appealing.  I am not very interested in cutting my pay when we have even more medical bills rolling in (just got several more yesterday).

CSF Study Results

Last night I got the results of the CSF study.  Now of course I can’t interpret what all this stuff means but I can see what is abnormal and what is not compared to the references they provide.  So imagine my surprise when it says the reference protein is 15 – 50 and mine was 258!  My glucose was also low and red blood cells were present among other things.  I started googling and of course all kinds of catastrophic potential problems came up.  The outcome I am looking for is “traumatic tap”.  I would certainly consider what I had done traumatic.  Luckily I had a doctor’s appointment scheduled for today so I wouldn’t have to wait too long to get some answers.

Doctor’s Appointment

So I bombarded my doctor with tons of questions.  First thing I found out was she was not comfortable with doing the head wrap again so that is out (for now). I also learned that the CSF study was most likely traumatic tap.  Exactly what I was hoping to hear.  She also told me she would refer me to UNC and that I should get some good information that way.  Hopefully they have a bump blaster.  I told her my biggest concern with having another surgery with the same doctor is that one of the risks of another surgery is creating a CSF leak.  Now operations to repair a CSF leak with the risk of creating a new CSF leak … hmmmmm.  Not so sure that is a good idea unless you can tell me what you plan to do differently this time than the last operation that resulted in a leak.  Adri has also read about John Hopkins using some type of glue or sealant when they put the dural patch in place to prevent leaks so she would like to go talk to them if I am told I have to have another surgery.  I certainly am not looking forward to that but I am looking even less forward to going through this whole recovery experience again.  However, I am staying positive and assuming it will not come to this.  We also got confirmation from the doctor that it is more of an annoyance than anything else and as long as there is no infection or related complications we can just watch it and see if it will slowly heal over time.

Lottery Time

So we figured that with the luck we have been having (having surgery, complications, etc where the odds are less than 1 – 2% of the population) that we should play the lottery.  We got 5 tickets absolutely confident that we were so lucky we had already won the $220 million powerball jackpot.  Unbelievably it didn’t work out (see the post above about going back to work).

Well that’s all I got for now. Peace out.  I’m going to watch Toddlers & Tiaras and Wipeout!

last tuesday lazaro (pa) called and threatened will and i with more surgery to resolve the camel hump on the back of his head.  the thought of this sent us into a tail spin worrying about all of the progress we’d made thus far and how more surgery would be so devastating to both of our spirits,  will’s lack of vacation time, the length of time you had to be out of work before he could claim his disability, and if we really could emotionally handle all of this once more.  monday was the fateful day we were to head back to duke to speak to zomorodi and see what he suggested.

we prepared for the worst and both tried to stay calm before the appointment.  we nervously sat in the waiting room waiting for his name to be called and made our way back to the office.  once in the room he looked at will’s hump (what he likes to call a pone) and declared that it looked smaller and not as tight as it was the last time he took a gander at it, and decided that he’d just do a spinal tap to remove some of the pressure and then wrap will’s head as tight as he could to try and force the fluid back down.  most people (including will, since this was being done to him) would be terrified at the though of a spinal tap, but i threw him right under the bus (totally full of passengers) and said that it sounded like a great idea to me!  after i shot my big mouth off i glanced his way and he agreed that he was up for anything to avoid more surgery.

they quickly prepped us for what was about to happen and told him to get into a gown, get into a curled up cat position (otherwise known as the fetal position) and to bring his legs up as high as he could.  when his holding of his own legs were not high enough up, i offered to assist.  after three attempts with longer needles and more lidocaine and will still in terrible discomfort the doctor just could not torture him anymore and told him he would have to have it done under x-ray.  i could tell how disappointed will was since now he would have to torture himself about it for the next 24 hours.  after getting him suited back up and scheduling the appointment in x-ray for the following day we headed back home.

this morning we headed back to duke, this time to the regular hospital – not the clinic – and headed to radiology for the spinal tap procedure.  will’s hands were shaking, both from nervousness and the 400mg of caffeine i’d filled him with.  we got him settled into the waiting room and again waited for his name to be called.  they brought us both back and showed us the x-ray machine and we explained our nervousness and they tried to ease will’s concerns and explained the procedure to him.  the radiologist said he felt this would be less painful since they know exactly where they are headed.  after they did the intro they kicked me back out into the waiting room.  they’d explained previously that they would keep him lying down for about 2 hours to ensure that he did not get a severe headache from the procedure, so when i saw the bed being wheeled in about 30 minutes later i knew he was all done and ready to be moved to recovery.  the radiologist came out and gave me a thumbs up, and off we went.

they let me stay with him for a few minutes just to give a smooch and then he was headed to recovery.  the nurse told me that if i had not had lunch that this was the time to go.  i headed to the very familiar cafeteria and picked up my regular sushi and cucumber platter and sat at a table and began texting everyone the good news.  as soon as i could scarf that down i picked up a frappuccinno for will out of the cooler and headed back to the waiting room.  the nurse finally called back and said that i could go back now.

will looked good and said he was not in much pain, just feeling pressure right now.  he explained the procedure was not smooth sailing like they thought it would be, but he survived and lived to blog about that himself.  i’ve nicknamed him “aunt jemima” due to his head wrap.  (he looks like a cutie.)  right now the swelling is totally gone and the back of his head is completely normal in the wrap.  the wrap stays on for 48 hours and we just pray that this does the trick and has will completely on the right track this time.

overcome with gratitude.

dozens of people have come to our rescue.  we’ve been given dinners, desserts, groceries, a/c filters, assistance with chores, offers to run errands, our lawn fully mowed, our plant beds fully weeded, favorite meals delivered, baskets of fruit, baskets of get well and relaxation therapies, plants, almost 100 cards, countless phone calls and emails, and uncountable numbers of prayers for healing.

its humbling to accept the outpouring of other’s hearts.  we honestly never knew we had this much support in our lives, and its times like these when they tell you that you find out who your true friends are.  what we found out is that we have more true friends than we could ever imagine.  we thank GOD daily for all of the blessings in our lives, and the times we have to spend with each other and with our friends and families. 

i could never offer up enough thank yous to everyone who has gone out of their way to make sure that we were well taken care of and never left alone.  these three simple words just do not seem to do it justice, but its all we can offer – WE THANK YOU.

today was will’s first haircut since he had surgery back in april.  he was a bit nervous about going for the cut, but happy to get it over with.  a hair cut just always makes you feel better, and mario (will’s barber) always talks with him and does a great job.  having the hair trimmed down makes it easier to see this bump thats creating all of the havoc over  here.  hopefully now we can monitor it a bit more easily.  we will keep our eyes on it and pray for good news at the neurosurgeon’s appointment on monday.

Today has been a very good day pain-wise so far.  It is a bit frustrating that I still don’t know what causes a day to be better or worse.  But I’ll take any good times that come my way.

I am still continuing to learn daily. Such as squatting as a pain-free alternative to bending over.  And using my elbows to ease myself down onto the pillow in bed so less strain is put on my neck and shoulders causing less pain.

I am truly realizing what all of the complaints about lack of after-care mean. My doctors provide reasonable care but I imagine they are just as clueless as I am.  While there is a common set of symptoms that may indicate CM and/or SM, not everybody experiences them.  I was recently reminded by a Facebook friend of this when I was feeling down as she mentioned that her husband’s head pain lead to a diagnosis while in my case there was no head pain but instead back pain.

It almost tends to isolate you if you aren’t careful. There are certainly fantastic support groups and people out there who are on a similar journey as you and can empathize and provide strength and support.  The fact still remains however that we are all on an individual journey.  Our symptoms are similar but not the same, the surgeries performed to alleviate the symptoms are also different.  There is no standard way of performing this surgery, it is really left up to each surgeon’s theories, creativity, and style. And of course our recoveries all look very different in many cases.

My parents are coming tomorrow to help support me and provide some relief for Adri.  I think I can honestly say I have never looked as forward to them coming before as I do now.  I am constantly overwhelmed at the level of support and encouragement I have been receiving from family and friends.  It causes such emotion just thinking about everyone sending thoughts, prayers, get well wishes, and going out of their way to help.  I can’t help but think every time I look at the mantle and dresser overflowing with cards that I don’t deserve this.  It is almost incomprehensible to me.

As I have  stated in previous posts I strongly believe everything happens for a reason.  While I can never fully understand the reasoning behind this trial, I do believe I have learned the lesson I was meant to learn. My priorities have been drastically wrong for a very long time.  I have known this but was never willing to admit it before.  Looking back over the past few weeks at everything I had wanted (and needed) to accomplish, it is just a dramatic illustration of this fact.  I have been stubborn and selfish for a long time.  When I am brutally honest and look at where I have been focusing my time on personal projects I am ashamed.  Focusing on the accomplishments I have had on the projects I have spent the most time on recently, my reaction is raw.  So what?  What does it matter?  That is meaningless.  The things that have true life value and needed my attention were instead left at the bottom of my list of “to-dos” and neglected as always, telling myself there will always be time to get to them later.

So what do we do when we finally come to realize we never gave proper attention to those things that we should have excusing ourselves by saying there will always be time later, and we realize there is no more time?  There is nothing left but regret.  I can understand now in some fashion how somebody can get to the end of their life and regret the decisions they made and the way they spent their time.  Fortunately, I have time to change this and adjust.  While I may have less “good times” to “accomplish” things when you focus on what truly needs your time and attention suddenly there seems no sense of good or bad times or accomplishment.  The truly substantial and meaningful things in life aren’t task oriented.  Will you honestly look back on a time in your life when you made the “right” decision to spend time with your spouse as a bad time because you were in pain and it wasn’t a good day from a recovery sense?  Likely not.  You will cherish those moments more than when you were having a good day but chose to spend your time poorly.  Likewise would you have love your spouse or spend time with your family as an accomplishment on your life resume or a task on your checklist? No, just framing it in that context immediately cheapens the experience and meaning of the moment.

This time in my life has allowed me the most internal reflection and personal evaluation ever.  And has been the biggest test of my faith and my character ever.  It has also brought me to a true understanding of what the phrase “born again” means.  Growing up you hear this phrase tossed around a lot, many times casually and seemingly without meaning.  I always wondered what that meant.  Growing up with faith in a Christian household I always had my doubts because I had never had “the experience” that everybody talks about, something to remember where something snapped and you saw life differently and new everything was going to be different from now on.  I have outwardly done what I was supposed to do, followed the checklist, the whole time wondering when there would be more and if I was missing something because I just couldn’t seem to achieve that close relationship or comfort with God that the “born again” speak of.  Today I understand.  The convergence of several events including these thoughts today has made me understand.

I enjoyed a visit with our pastor Matthew today who briefly explained the scriptural background for anointing for healing.  He then anointed me while saying a prayer for healing.  The portion of this whole experience that stuck out to me was the portion of the prayer where he prayed for the spirit to come on me anew.  That has stuck with me because it made me realize that has been my prayer this whole time.  But I wasn’t doing my part.  I said come on in but these doors are locked, you can’t go in there.  And I know you want me to change these things but I feel really comfortable with the way things are and we can worry about that later.  It doesn’t take long before it is obvious your welcoming words are just that …. words and your actions are really not welcoming at all.

So today with all of the trials I have been through recently, the meaningful moments I have experienced, the introspection, I truly feel I understand these words I could never make sense of before.  I admit my faults and while I know I will never be perfect I am tired of the way things are. I do feel “born again”.  I see things, and feel things, and understand things differently now.  Things that had been there the whole time but I just couldn’t seem to grasp.  And after all of the failures and rawness is stripped away, the only thing left is …. hope.

Soooooo sorry, there is no censoring this.  Last night absolutely sucked!

Some days I feel as if the more I heal, the worse I feel.  I know logically that this is probably due to the fact that I have been trying to scale back on the meds to prepare myself for joining reality again some day soon.  But knowing this doesn’t help.

Last night the headaches came back full force.  And this time even laying down didn’t help.  To make matters worse, I had severe neck and shoulder muscle pain.  I could definitely feel where they cut the muscles in my neck.  We tried pills, heating pads, everything and nothing helped.

It would have been somewhat tolerable, like the headaches, if I had been able to find a position to lay in that was comfortable and could just veg out. But noooo my neck had other plans.  My neck and head worked in cahoots to make every moment miserable.  I could not find any position at all that would ease the pain in my neck yet for whatever reason I felt the need to keep moving and trying to find that magic position that would make everything feel better.  The problem?  Every time I moved even an inch my head exploded.  I mean seriously I almost expected to reach up and discover that my head was no longer attached to my body.

Thankfully we still had some Vicodin remaining from my last prescription and came to the conclusion that this experiment (although doctor prescribed) about using caffeine to try and stop the headaches was a complete failure.  So this lasted a couple of hours until it was time for my next round of pills and we switched back to the Vicodin and kept that going all night.  Thankfully my wife is an amazing person and set her alarm to wake up twice last night to give me doses of the pain meds.

So today I am still not feeling 100% but am feeling much much better.  I still can’t help but think … I am supposed to join real life and go back to work in 9 days? Seriously? If scaling back a little from the narcotics causes full on pain on the 9 – 10 scale rather than just increasing the discomfort, how am I supposed to stop taking these pills in a week.  I suppose I will find out but this whole mess is getting very old and I just feel like it will never end sometimes …

Sooooo this was going to be a very short post but the more I thought about it the longer it got … Sorry!  Random thoughts for today that are flitting through my head.  My ADHD is probably fueling this jumping of my mind all around so good luck keeping up.

1. Medicine Theory
While I would certainly love to be pain free and on heavy narcotics I made the decision recently to scale back.  This was for several reasons if I am being honest.  The foremost reasons is I was scared I wouldn’t be ready to be functional for work in 2 weeks if I hadn’t even tried functioning without drugs.  Another is I wanted to ease back into the game rather than suddenly stopping my all medicine cold turkey.  But honestly … I was also getting sick of this medicine regimine.  It gets old quick.  Imagine taking medicine every 4 hours.  My wife has been so gracious waking up and not complaining because this means we also wake up to take medicines at 2 am and 4 am.

2. Change in Sense of Smell
Today I have become a superhero! Bet you didn’t know! My superhero name is snuffleupagus and my super power is a super enhanced sense of smell.  I declared that I wanted waffles this morning and as I walked into the garage to get to the car I was overwhelmed with the smell of gas.  I mean so bad that it smelled like some arsonist was getting ready to burn down the house. Well it always smells like gas in there because we have two 5 gallon gas containers for the riding lawn mower and one 2 gallon gas container for the weed whacker.  Normally I can smell it but it smells pretty mild.  Today I smelled it so strongly it almost knocked me over.  I thought that was weird but just noted it and moved on.

Then we get to the Cruizers so Adri can gas up the car.  She cracks my window and I was floored. I LOVED riding in the car with the window down smelling the air and feeling the breeze on my skin.  I could not enjoy this moment at all I was simply overwhelmed with the smell of pollen and allergens if that is even possible.

So we leave the Cruizers and go to the Lowe’s Foods in the same parking lot to get syrup for the waffles.  The walk from the car to the store was almost too much.  I felt as if I could smell and was being assaulted by every single granule of pollen or pollutants in the air.

When we finally got back into the car after the shopping trip it was the same thing.  The best way I can describe it is to imagine a hot summer day sitting in a really old car with leather seats.  You get that effect where you are overwhelmed by the odors of old car and leather and feel like the air is being sucked out of your lungs because it is so hot.  That is exactly how I felt when getting in the car even though it wasn’t hot.

3. Surprise!
If I have already blogged this forgive me.  Narcotics, remember?  So just when you think you have a handle on something you realize you don’t.  When we went to the ER last Friday because of my obnoxious headaches, the doctor insisted I had a laminectomy and asked if they told me what vertebrae.  I argued with him a couple of times to no avail because his response was simply “I am reading directly from the surgical report”.  Silly doctor! You have no clue! I know what they did to me better than you!

Apparently not.  When I had my follow up with Dr. Zomorodi and recounted my experience at the ER where I tried to gently explain to the ER doctor that I had not had a laminectomy because my surgeon told me it would not be needed and when I awoke in the ICU and he gave me the report on how the surgery went he didn’t mention that he had done one.  I should have realized when he looked at the PA after I mentioned that.

Later after the stitches were removed Dr. Z invited myself and my wife to his office to show us the CT scan that was taken at the ER and go over with us what he had done.  In some ways it was fascinating because you could see where he had removed the bone and where he had sewn in the patch.  You could also see the fluid pocket (which by the way has completely disappeared and come back fully twice since the appointment … so much for being healed).  Now the doozy was when he zoomed to another view and said “and this is where we removed half of C1 to make some space and allow me to cleanly seal the incision”.  Dang it … I guess now I have to finally admit I did have a laminectomy.  While I am certainly not happy about the added pain I am happy that at least there possibly is an explanation for why I have been having so much more post-op trouble than had been expected.

4. After Care? What after Care?
So I now have come to realize in full force what the chief complain is of almost every Chiarian I have talked to and why these various foundations and organizations exist.  As if it wasn’t bad enough that there is no standard treatment and no consensus on what works (many doctors perform their own version of this surgery which is why it is so important to do your research and make sure you are comfortable with your surgeon, their background and experience, and exactly what is being done to you).  I had taken for granted that everybody I talked to knew what Chiari was and what I had done to me.  Hmmmm must be those handy narcotics making me forget that duh! it is because they were all in my surgeons network or the same practice.  I have now started facing doctors who have never heard of CM / SM and am starting the struggle of learning how to explain this disease and the “treatment” to others when I still feel like I haven’t fully wrapped my own head around it.  I know I had said this many times but I truly can’t understate how hard it is to explain to people why I had head surgery as a remedy for back pain.

And this is one of the biggest problems with this disease to date (besides the fact that the treatment is brutal and has no real guarantees).  There isn’t really any good aftercare and no hope of standard or good aftercare until there is awareness.  After all, how can I expect to go to doctors and follow up and discuss the problems I am having and expect to hold a meaningful conversation and receive an appropriate resolution to my problem if the doctor has never heard of my condition?

5. Exhausted? Who me? Absolutely!
The other thing I am struggling to take positively is the ease at which my good times go bad.  I have not been very athletic or in shape in quite a while now but I still struggle to comprehend how doing such simple things that we all take for granted can cause so much trouble.  Imagine just simply walking to your mailbox and back.  Not even briskly, you are walking very slowly with purpose taking it easy not to hurt yourself.  Seems innocent enough. Until you feel as if you have walked across the entire United States and you suddenly have a headache so bad that combined with the exhaustion you don’t feel back to your pre-walk self until after you have taken a 5 hour nap.  Talk about frustrating!

And so there it is.  I am done ranting for the day.  All I can do at this point is hope that my random rants and ramblings about my experiences into uncharted territories (at least for me) can help someone in the future who finds themself in the same situation as me … not knowing what to do or what the future holds and scared about the immediate future and what is to be done.

Will woke up this morning with the bump, still strong and in full force.  However, as he listened to the music while I was cooking, and then came to write his blog, and then later ate his breakfast, the bump dissipated.  We were chatting at the kitchen table when I looked up and said that the bump was gone.  He reached back and felt the back of his head and could tell that it really was gone.  He prayed for healing, as I’ve been doing daily since before the surgery even occurred, now let’s just pray it stays this way.

We always both turn back to this song from Casting Crowns in times of life’s trials and tribulations, but it is ever so fitting.

I was sure by now,God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it’s still raining
as the thunder rolls
I barely hear You whisper through the rain,
“I’m with you”
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

Chorus:
And I’ll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I’ve cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

And, we will continue to praise God in this storm, just knowing that he knows the purpose for our pain, our trials, and our lives.  We just pray that we are wise enough to listen when he’s calling, and know that he is always with us.

Yesterday and this morning have probably been the most pain I have been in in my entire life.  I have never experienced a headache and muscle pain like this before.  I guess the honeymoon period is over and I am now experiencing what Dr. Zomorodi has constantly been reminding me is the most painful surgery he does. This morning I awoke to my wife making my favorite breakfast and playing our favorite Christian songs.  I guess I am just an emotional basket case but I find myself pondering each song and bawling my eyes out.  Just reminded by each how I have taken everything for granted and not lived the life I should have and wanted to have lived and how merciful God is that he would take back the least deserving (over and over and over again).  However I know with my stubborn personality this is exactly what I needed to bring me closer to him and there is always time for a fresh start.  No matter how hard this trial is if it brings me close to him and puts me back on the right path I wouldn’t have it any other way.

sleepy mc sleeperton was lurking around the barnhill today, but i woke him up with some tasty vittles and got him set up on his lap top.  the bump has gone down in size today – we got a measurement of 23 1/4, but the headaches persist.  i’ve even developed one myself.  sympathy pains?

we were hoping to get some fun in tonight by going to down town wake forest’s art after hours, but husband’s headache was just too much to risk heading out of the house.  instead i ran out to our latest chinese restaurant and grabbed us some tasty dinner and rented “the invention of lying”.  we love a movie (even if it’s a giant cheese ball) if it has a happy ending, so this was a good distraction from the fact that we’re trapped in the house.

praying for a pain free rest of the weekend!

Husband has been posting all of the juicy details for your reading pleasure, but here I am with the most recent photos.

Other than us constantly monitoring the size of husband’s camel hump, (24 3/4 at the moment) we do not have much going on. Lisa urged me to dedicate the following song to husband today “My Humps” by the BEP.  Husband – this one’s for you.

Bored as we are, we do know the following, the neighbors appear to be completely moved out to the left of us now, and behind us a new house is under construction. Since we are mostly hanging out around the house we’ve got tabs on all of this in/out of the neighborhood.

We hope husband’s new medicine regimen will keep him on the road to pain free recovery.  Tomorrow night we’re planning a little bit of a night out in down town Wake Forest, so we shall see how it goes.