Monday, January 31, 2011

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. :)

Sunday, January 23, 2011

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.

Wednesday, January 12, 2011

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.

Tuesday, January 11, 2011

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.

Sunday, January 2, 2011

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".