The Grind of Healing

I need some sort of a mantra or perhaps a set of them.  Healing from a surgery is always difficult for me at this stage.  I'm past the initial couple of weeks, when to be honest, I think adreneline sort of kicks in and helps you get through.  But this stage is sort of flat.  I'm still dealing with post-op pain, can't figure out how to sleep with my "new" neck, ie with the fusion of C4-C5 and that's been more of an adjustment than I would have thought.  To be honest, everything happened so quickly with the surgeries that I wasn't really prepared for the recovery period and what to expect.  So, I've yet to hit a time when I'm feeling really good, though I've been trying to put on a good face for most people.  I think Steven really knows I'm having a difficult time, though we've not talked too much.  He gave up literally his entire month in January just so I could get medical treatment and I know he's "medicaled out" so I've tried not to make tons of conversation about it, though it's almost impossible to avoid the topic.  So, I'm back to the mantras, something I can recite to myself to get me through the times when I'm feeling depressed or drained or in pain or all of the above.  Something to get me through this recovery time and on to the next phase, which will be 3-6 weeks away.  I don't know what I want to be doing, seems like something other than what I am, though.  I'm trying to remember that the most important thing I can do right now is to allow my body to heal as much as possible and recover from the surgeries.

I want to say both to myself and anyone else who reads this that despite my complaining and struggling through this time, I'm SO incredibly grateful that I was able to have the surgeries!  I know that it was literally a miracle that it all happened and I have had SO many people praying and physically working on my behalf to make those surgeries happen (special thanks to Anne, my dr and Sheila, part of her team, without whose epic amount of work, those surgeries wouldn't have happened).  I've been wondering lately if over my life I've done things for other people that in the Universal flow of things somehow have come round to bless me with so many wonderful people who have been willing to help me, or if I have years and years ahead of finding ways to pay back good things to others for all that's been done for me.  I hope, to be honest, that it's some of both...though I have no idea at this point how I could do that.  But those thoughts need to be saved for a later time in order to preserve current emotions which have been a bit internally volatile (understatement).

So back to my mantras.  What could those be?  I will get through this.  I will heal from these surgeries.  This healing period will pass. It's just a few more weeks.  It's OK to feel emotionally variable through this time.  The pain will ease.  My body will acclimate to the new changes that have been made in my body.  These changes will be good and will help.  My TBM has been more manageable for the past couple of weeks.  My HA isn't better yet, but we have time and the new meds on our side to try to help that.  It will be interesting to see how the Diamox will help with the Intracranial Hypertension which may help the HA.  I have friends and family who are helping and supporting me through this time.  With my drs' help, we'll figure out how to deal with the nightly horrendous, gut wrenching, waking up in tears nightmares that happen EVERY night.  And somehow, with their help, we'll figure out how to get that better.

I guess that's enough pressure let out of me for now and maybe a few good thoughts to hang onto in the midst of this lull that's hard to get through.  Problem is, no matter how much help I have, it's still me that has to live out every minute of every day and that's a daunting prospect.  But I'll do my best to not look ahead to that and just focus on now and let the future be just that...the future.

Deep breath, and sigh.

Good night.  I really hope it is one. :)

Life after untethering - 6 days post op

Symptoms are changing around from day to day, which I expected but the surgical pain in still very much present.  I forget I can't do simple things like pull up my underwear in the bathroom, which is why, I suppose they invented the infamous "sexy" johnny hospital gowns.  They're not the most comfortable things in the world but they are functional.

I try to spend a little time up on my feet (with help, as I find I'm a little wobbly with the meds...) to get my "sea legs" back.  This is the tightest my back has felt in my entire life!  Funny, you un-tether the spinal cord so it's finally NOT under strain...and my lower back feels really tight.  It's just the surgery itself.  I know it will get better and resume it's hypermobile self in time.

I'm a little scared as I've had a few coughing spells today.  So far, still better than before but it hurts SO badly to cough because of the cervical discectomy that was done that it's miserable.  I can't imagine the pain if I couldn't stop the coughing!  I have moments when the ringing in my ears stop and for the first time in my life I hear - silence.  But I also have times when it comes back so I'm trying to remind myself that this is a major process of my body rearranging the nerves and relearning what it's like to live without the spinal strain and brainstem compression.  I think it's going to take several months for things to "refind" their way but the time will pass.

I had some issue with one of my ears bleeding after surgery and it's been "popping" strangely today but since this is mostly a place to write down some of the weird symptoms as they happen, just to keep a record, I figure it's worth mentioning.

Keeping fingers crossed that the meds allow me to sleep tonight. :)

Giving over, not giving up

I've come to a place of surrender.  I've always hated that religious term because it holds such difficult and negative connotations.  No one wants to "surrender", wave the white flag, or not "get their own way".  But I'm realizing that those aren't really the true meaning of the word.  I'm believing that it means instead of "giving up" or "not getting my way" that it means I can give these concerns "over" to God because he is well able to keep them for me.  So, I'm attempting to hold these surgeries lightly in open hands before God. What he chooses to do, I leave with him. If there's supposed to be a delay, he still knows best. I have to admit to still hoping he works all out so that miraculously, I could still have the surgeries this week and I still plan to do my part and follow through on any work I need to do to accomplish that. But if he wants me using a walker for a season, that's OK. If he wants to allow me a season in a wheelchair, there must be a reason. So many people have seen his miracles in my life through this, often in working things out quickly for me. But I want that to continue. I don't have the strength to go on and to do this...but he does and my extremely limited strength is only an opportunity for his limitless strength kick in and get me through. I have no idea what this week will hold for me. I still am in need of treatment and surgeries but God knows this so much better than I do. And I'm so grateful for the information I've learned about my genetic conditions and how're they're affecting me and the expertise and kindness I've experienced from the drs I've seen while being here in Maryland. As a posted earlier, a very good friend suggested I "trust the process". Throughout my life, God has often come through for me "last minute" and I was reminded by this friend that, while it may be difficult, it IS a recurring pattern in my life and if I go with it instead of fighting it, I'll be much more at peace. And she was right. :)

I'm remembering that even though I truly believe that healthcare is a basic right for all people, it's also a privilege that I went without for many years.  I'm trying to remember how far I've come because of all the doors that have opened for me.  Without the intervention time and again from a higher source than any of us, I can't even imagine where I'd be.

And, I have a wonderful family - intentional family, who have supported me and loved me through thick and thin when times have been awful and I've been a pain to be around.  I'm so grateful for all of you and for the many of my medical providers who I count among that group.  To have such a family, is another miracle in my life.

A different day and more tests needed...

Repost from my husband: @Steven Phillips

THE GOOD NEWS: Doctors down here think they may have isolated three specific possible conditions that may be the reason for Rachel's problems. THE BAD NEWS: we are stuck here waiting on approval from the insurance before we can proceed with testing to confirm findings. ARAUGH!!! Can't go home - can't proceed! PLEASE PRAY NEED MIRACLE RIGHT NOW!

Couldn't agree more but I'm feeling kind of off kilter with the new info as no one has really shared all that it means or could mean for me. Plus, it's been an awful pain day and actually a really bad cough day, too. My team of drs back home are working overtime to try to help get things sorted out but we really do need prayer for all of this to work out OK. I guess I got the two appts back to back to begin with, which is why I'm here so I'll try to trust for similar openings going forward.

I guess it's dawning on me that if the problems they are going to be looking for on the next round of studies/testing are actually conditions they find I have, I'll be looking at likely two surgeries. One I'm not overly nervous about, but the other would require surgical correction of the area in my mid brain where the brain stem is (where the spinal cord connects to the brain). I didn't realize that would be what would be needed and any surgery around the brain stem (controlling all autonomic nervous system functions) has a potential for some serious complications. I'm trying to just be at peace since it could be found not to be a problem but there is definitely a malformation of one of the bones in my mid brain according to the geneticist yesterday.

I need sleep so much, it would help the pain and the ability to cope and process all that's going on. I'm SO grateful for the new information and am trying not to get my hopes up (too much) that this could help because it would be absolutely awful to hear now that they know I have some malformed bone in my brain BUT they can't do anything about it (sort of a "sucks for you" type of thing).

Enough rambling for now. I'm not even sure I'm making sense now but I'm so grateful for my friends/family and I'm so grateful for your love and support. I'm feeling and acute need for it right now so, please know it's valued and appreciated.

Sleep well all, hopefully with wonderful dreams.

1st Appt in Maryland with my geneticist

Today was overwhelming and I'm really tired & hurting. Looking back, I'm not sure exactly what I expected but the appt with the geneticist certainly was good. She is AWESOME & we definitely loved her & her approach immediately. She was SO thorough, did a lot of physical examination, measuring, etc. I have much more connective tissue disorder involvement than I had realized but we need to do DNA testing to (hopefully) rule out a couple of possible types of heritable connective tissue disorders that are life threatening. We're praying that the insurance will spring for the testing (it requires a pre auth). She's never seen a patient with a CT disorder with the level of respiratory involvement that I have but she's willing to help as much as possible. She (and we) are really looking forward to the neurosurgery appt tomorrow and what the neurosurgeon will have to say.

The weather is bad down here...especially for down here! It's snowing and icing so we're also hoping and praying for safety getting to appts for us and the drs.  But, we both have peace that the weather might open possibilities that wouldn't be there otherwise.  We'll see how it goes.  I'm so grateful to be getting the chance to see these drs and for all the work that MY drs back home have done to talk to these specialists and have them accept my case. Going to try to sleep now...thanks everyone for all the love, energy, prayers and friendship.

A Very Different Set of Resolutions

As 2010 comes to a close, and 2011 dawns, I find myself as I do every year contemplating resolutions that I'd like to make for this new year.  But this year, my resolutions are quite different than in years past. This year, the overall goal is peace. Seeking that peace, searching for it and finding a balance in it is my overall goal. But to achieve this, I have some specific things that I want to aim for as I endeavor to make this peace a reality in my life.

I want to "be" more and "do" less. I want to accept more and judge less.  I want to love more and strive less.  I want to communicate more and assume less.  I want to be content with simplicity, and be satisfied with less.  I want to be able to express myself in ways that make me understood.  I want to let go of perfectionism and allow what is to be enough. I want to turn my thinking and the unhealthy thought patterns that have been ingrained for years upside down and accept and explore the person that I am. I want to give myself permission to be authentic with everyone, regardless of the outcome. I want to learn to be gentle with myself, kind to myself, and as understanding with myself as I try to be with those that I love.  I've missed something important throughout my life and it's a very simple but difficult concept to actually put into practice on a day-to-day basis.  There's so much in the statement, "love your neighbor as yourself". First of all, I need to put that in 21st-century context. To me, that means I should love my family (itentional or origin), my friends, my community, those people I share my life with as I love myself. But the truth is, I've spent the greater portion of my life disliking and at times hating myself so that has to hamper my ability to love those around me if I can't love myself. I'd like to make peace with myself this year. So that's why, in this strange way, my New Year's resolutions are as much about "doing" less and "being" more.  Maybe, if I can learn to treat myself differently, to treat myself gently, I can come to understand what it means, and find the value in myself "human being", rather than a "human doing".

Normally, I'd probably post something like this on my private blog but my pain therapist has been encouraging me to share more of my journey with people - regardless of what that might look like.  So, in order to try to get my head and heart back together and find some sort of equilibrium again, I thought I'l write.  I wish I could use my dictation software but unfortunately, my cough and the acid/vomiting has been back again tonight with a vengeance so I'm on CPAP with all the anti cough meds I can take.  So, the face mask nixes the ability to use the voice software.

More surgery details

I said I'd expound a little on what they said in my last thoracic consultation that was a little disconcerting so, here it is...

I knew about the "Thoracotomy" or at least thought I did but there were several pieces that I didn't know.  I'll have "chest tubes" hanging out of my incision draining into some little boxes...then when you're healed enough, they just "pull them out" through the incision.  Definitely something to look forward to...*eyes roll*.  Then I found out they will be doing an epidural that will remain in place for some undetermined amount of time with pain meds being pumped into the epidural space.  The pain relief idea sounds good, BUT last time they so much as did a lumbar puncture, I had the horrible spinal headache complication and the EDS puts me at very high risk for that to happen again.  It's just common with the weak connective tissue.  So I already let them know about the blood patch and they might have to do that since it worked for me last time.  I'll of course have heart monitors on, but didn't know I'd also have a catheter as well.  Never had that and am not looking forward to it.  I think they'll wait until I'm knocked out before they do that though.  I didn't know that the ongoing pain from a thoracotomy can be so prolonged either.  They may still have to cut through my ribs and remove a part which I didn't like the sound of and hoped we'd avoid.  And that isn't even beginning to get into the airway repair itself.  Sounds like lots of bronchoscopies loom in my future as well.  They also may have to work down into the lung(s) themselves in order to attempt to support the lower airways as much as possible.  I won't list all the possible things that could happen with that.

I find myself in a sort of surreal moment in time.  I never saw a surgery like this happening in my life but I suppose no one ever does.  So now I have two days to try to enjoy time with Steven and NOT think about the hellish procedure looming in the no-longer-distant future.  I'm also trying to relax, be at peace and visualize a positive outcome.  I had distilled my feeling down to four words (in this order): peace, apprehension, curiosity, concern.  Overall, I've been peaceful about this knowing that it's the right direction and by process of elimination, the only direction, currently.  Apprehension, because they're going to do a lot of cutting, moving, sewing, tailoring, repairing, reconstructing, poking, prodding and such and I don't think anyone likes the idea of that.  Curiosity, in that there are a lot of unanswered and unanswerable questions that will only be known from trying this and hoping it works well.  Concern for Steven and my intentional family while I'm going through this and all the changes it could mean.  This has all been made more difficult by some major screwing up by the hotel and causing things a lot more stressful...too long of a story for now but things are definitely not sorted out.  *sigh*  One thing after another.

My challenge and goal is to get back to that place mentally and emotionally. If I can, I guess I'll be in a better place because I'm now even more informed about what they're going to do so there will be less surprises.  I don't like surprises on things like this...I'd rather prepare myself mentally for the worst scenario and then be happy if it isn't actually that bad.  Here's hoping that's the case.  On to the waiting game through the weekend. 

Invisibility

I walk in a room

where friends abound but

no faces turn to greet me.

I'm not avoided

but politely ignored

almost as though I were invisible.

Or they wished I were.

It would make life easier

for those who care

if I could or would disappear.

No pain to see

no struggles to bear

with a friend who's overwhelmed.

My dreams of changing the world

of making it a better place

have slowly vanished.

Replacing them are lofty hopes

of waking up each morning

and trying not to cry.

I've become a burden

on those I love most

taking instead of contributing.

I feel useless.

I don't know if I'm wanted any longer

by people I've thought were close friends.

Maybe I'm not enjoyable to be around anymore.

But it's an interesting view of life

for those in pain

and who are challenged in different ways.

The world isn't an easy place for us

we're purposefully overlooked

and conveniently not seen.

I suppose no one wants to be reminded

of the darker sides of life...

and what can happen to one person

can happen to anyone.

For some, maybe that's just too much to bear.

So those of us who have to fight to want to stay alive each day

we become either a spectacle to onlookers or simply

invisible.

I sit alone in solitary confinement

in a prison of constant pain.

Family and friends look on in anguish

and tears roll down our cheeks.

They reach through the bars

to touch my hand

to remind me they're still here.

We all look for a means of escape

but hopelessness overtakes.

Key after key fails to unlock this cell

and the bars seem to grow stronger

slowly cutting me further off

from life and those I love.

Expect a miracle

Yesterday, I did something kind of out of character for myself. I flat out said I wished someone would buy me a piece of jewelry. Not just any piece, mind you. One I had seen the day before that wouldn't leave my mind. It's a bracelet, a silver cuff bracelet that has inscribed on it: "expect a miracle" I really wanted to be able to wear it all the time and only have to look at my wrist to be reminded of it. There are so many health issues I'm dealing with right now that I find myself easily overwhelmed and fighting on a moment to moment basis to keep my head above water emotionally. When I mentioned it to S & C, they both instantly wanted to get it for me and a short time later, I was wearing it, all polished up, with those simple words staring back at me from my wrist.

I have this hope in me that, perhaps, this reminder I now wear continually, will help me in those all too frequent times of struggle.

But this led me to another question...what defines a "miracle"? Will I only be satisfied if the "miracle" is a complete, instantaneous, genetic reengineering of my genetic code with new airways, vertebrae, and connective tissue? Well, of course, who in my position wouldn't be satisfied that? But maybe it isn't just about that, and maybe it isn't just about me. (*shock* *faint*) I know, what a concept, right? It's so easy to overlook the miracles that God does for me everyday. The fact that he's given me a spouse, partner, best friend to walk with me tirelessly through all of this and who, for some unknown reason, continues to love be despite all of this, is a miracle. The fact that's He's given me a community of friends who have really become family and who continue to support me, believe in me, and be there for me, is a miracle. The fact that I'm writing this from the porch of an amazing house in North Carolina on the beach on a vacation that was a complete gift to us from some of those friends just so we could have a break, is a miracle. The fact that I have a top medical team from Anne to my doctors at Harvard, and that I have such favor with them, is a miracle. The fact the God is connecting me up with another person who's gone through similar struggles due to EDS is a miracle. The fact that He's given me strength, moment by moment, at times, just to stay in this life during this time, is a miracle. The fact that time after time, when I should have to wait months or even a year to see a doctor, he gets me in in literally days or weeks, is a miracle.

I guess it comes down to what CS Lewis said at the beginning of his book "Miracles". (my paraphrased version). Those who don't believe in miracles will never see one...they'll always attempt to explain away any happening that's unusual as a "trick of the light" or a simple "coincidence". But those who are looking for and expecting miracles WILL see them and won't be disappointed. So, I want to start looking for and seeing the miracles He does for me on such a frequent basis. I know that, in some sense, the "Pollyanna" concept is a flawed one in terms of expecting a perfect almost "princess like" life. But I don't think that was really what was going on in that book. She was taking otherwise difficult situations and finding ways too see the good in them and for me, I think I need to go back to seeing the good more. I mean, it isn't as though I'm not trying to do that already, but maybe this renewed hope will be a positive start.

I don't expect to not have struggles with all of this. I don't expect to not have to adjust my life, my thinking, my expectations of myself right now to match what I'm going through. I don't expect to not have to be "gentle" with myself (a concept I find MOST difficult). But, if I can make those adjustments right now, with His help, then that's a miracle. If I come to a time later when I can become more like my "old self" then that's a miracle. And, if I can find a way to look for a "new self" to become, instead of mourning the "old self" that I can no longer find...then that is also a true miracle.

This is my aspiration. I certainly don't expect to do it perfectly. And if I can come to that realization and truly incorporate into who I am, that will be an absolutely amazing miracle.

So, now, I look down on my wrist and remember to "expect a miracle". Because, each moment holds that possibility and "suddenly" can happen in an instant and everything can change.

Oops!

I recently switched my email account and in the process of doing so, I also switched over "ownership" of my blog to the new email. The transfer should be "transparent" in terms of the blog, url, etc. Problem is, that meant that the pics that were posted via the old account weren't associated with the new account. So, to make a long story short, I had to figure out a way to repost the photos via the new account and should've posted as a draft rather than a live post. So, a whole bunch of weird new reposts of old photos came up briefly on RSS/dashboards, etc and I hadn't thought all that through. I deleted the new superfluous posts after transferring the photos over so the new posts will show up as invalid. Sorry about all that. BUT! The good news is that all is transferred and should be working fine now. If not, at least I know to post as draft to keep your RSS/dashboards quiet...LOL!

Many thanks to Jenni for pointing this out.

*sigh*

It's been a long, looooong day at the hospital. I'm exhausted and despondent. I hope the remedies work because I DON'T want to have to be readmitted! Hospital inpatient isn't fun. :(

Coughing my head off/lungs out and baffling the doctors with it seems to be my talent for today. *sigh* Coughing is really exhausting, actually. And none of the remedies/meds, etc have helped. In fact I'm really hoping I WON'T have to go back into the hospital. That would not be fun at all.

But for some reason, I'm thinking again of getting another piercing. Problem is, I don't really know if I should b/c of the connective tissue disorder. I'm afraid that would make it more likely to pull out or something?? I don't know. I guess the ones I have are OK so maybe it would be fine.

I know, a completely random thought but one I wanted to share with my friends. :)

I'm back. Just trying out something new. I switched accounts in a way and = wanted to see how this would work out. So I hope to post more later at some point soon but for now, I need to know if this will work!

Why do we humans care so much about what other people think of us?  Especially, when it comes to strangers...I mean, I can understand the rational for those closest to us, I struggle with that myself frequently.  But yet, when it comes to strangers, I just don't get it.

And yet, at times, I find myself tempted to do that exact thing.

OK, so I was super down and I realized that I didn't even get a pic posted.  Crazy..I feel like I failed.  But let's put it behind us, shall we?  Life happens and lately, it's been happening badly. :(

I SAW a pic I wished I had taken today but didn't venture back across the ice to take it.  Maybe tomorrow.

Today, for a few moments, it felt like a hint of spring. The wind had stopped for just seconds and the sun was so warm...it was lovely. I feel happy that I've made it through the winter. It wasn't as difficult as I had anticipated. I had a lot of worry about the snow and ice this year because of the falls Steven and I both took last year and the ensuing breaks, tears, surgery, and months and months of PT. But the sun is shining and spring is creeping closer. I'll actually enjoy the snow expected to fall tomorrow.

As I was cleaning the windows on the car yesterday at a gas station, I had this realization that sometimes you can lose your vision so slowly, imperceptibly that you don't realize it until it completely foggy or gone altogether.

Strange, I know, but for some reason, this dried flower wall hanging made me sad.