Frozen, Frustrations, and Finding the Spirit

Frozen in time... that's how I feel right now.  My surgeon only holds regular clinic on Thursdays and it had been thought to be planned that I would be released this past week, however, my surgeon is a scatterbrain and her gate keeper failed to notify us that the week we thought I would be released the surgeon would be out of town at a conference.... glad to know she's so educated and honored in the neurosurgery community to be attending and speaking at conferences... but I need her here, too!! So, of course next week is Thanksgiving which puts my follow up appointment on the 1st of December.  For legal reasons they cannot release me to drive or work without actually seeing me, and even though we know I should have been released this week I still can't drive or officially walk on stairs alone because if something does happen and the insurance company sees that I was not released by my doctors, I'm stuck figuring out how to pay for EVERYTHING out of pocket, and Lord knows I don't want to have to figure out how to pay for brain surgery.  So I must behave and be stuck for 2 more weeks, which will make my release to drive and walk on stairs at the 8 week mark and my return to work at the 10 week mark.... 2 weeks past the deadline I had set for myself, and all due to scheduling issues, not my not meeting my goals.

6 weeks post-op

I miss Bouga terribly.  Even though I am getting to see him several times a week it's not the same as living in the house and raising my son like I am supposed to be doing.  It's killing me, and it's definitely showing in him.  How could it not when he is so routine oriented and requires the guidance and structure he does?   I am very blessed that my mother is able to care for him while I am going through this, but stepping up and parenting an Autistic 12 year old is realistically a little more than she is capable of doing day in and day out.  They are hanging on, but I am seeing a decline in Will's social skills and his school work and behavior has taken a HUGE hit. There are funny letters coming home on grade cards that I am not used to seeing and that I know he is capable of better, and I feel like I am letting him down by not being there right now to guide him and help him and know every detail of what is going on.

Bouga's School Pic

So, I guess frustration sums up the mood of my world right now.  Frustrated with the delays in my release, frustrated with not being able to care for my son, frustrated with this stupid electricity that I still feel up and down my body most days.  Ironically the symptom that made me scream to the doctors "Something is wrong with me!!", the symptom I couldn't ignore, the symptom that freaked everyone out, is the major symptom I am left with after surgery, and likely for good. I feel like I did 5 years ago when Bouga was first diagnosed... even though we have known there was probably something wrong with me for several years and I have been mis-diagnosed twice, coming to terms with a chronic illness is a process once it has a name.  A very odd process from a medical stand point when as a medical professional, for most of our patients, surgeries are supposed to fix what is wrong, chronic illnesses are treated with medications and therapies.  Those that require both are in depth, complicated patients and sadly, now that is the category I sit in.  I am honestly not sure I am ready to accept that.  I am not in denial, but realistically I am only on the 3rd step of the 7 Steps of Grief- Anger and Bargaining, I know I can live a relatively normal life with Chiari, and for that I am blessed, and I am finding my compassion again for those going through rough times and suffering themselves, but I am also finding myself lashing out at those who are healthy and only trying to help.  Angry that the surgery fixed some, but not all of the symptoms.  We knew that was the expectation, and that it may have not fixed ANY of them, but I still find myself saying give me back the other 20 symptoms if you could just take away the headaches and the numbness and electricity. I really am going to try not to complain about living with Chiari, at least I get to LIVE with it, but right now, I am not so happy about it.

I am trying to get excited about the holidays to help push me through all 7 steps, I am ready to shop, and ready to be able to decorate my house, and I think if I could get on a roll and do all of those things I could push my process along, however, being limited by not being able to drive and having tighter finances due to short term disability, makes getting on a roll a little bit difficult. I'm watching Christmas shows and listening to Christmas music, but Darren dislikes the holidays so much that decorating and getting this house festive really isn't an option, so I must wait.  Black Friday is not going to be safe for me this year, so I will be doing a lot of shopping online, and hoping that somewhere in all the movies and songs and ads I can find my childlike love for the Christmas season that I adore so much and annoy my sister to death with.

Oy, this could be a long process!!!!