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!!!!

4 1/2 weeks and A LOT of Lessons

I apologize for the delay in updates, between there just not being much to tell, my adjusting to medications, and my lack of motivation, the blog just has not made it to the top of the "To Do" List. I honestly have just been resting and taking short trips out to the grocery store and doctor's appointments.  I am just 4 1/2 weeks post op and, minus today, have really felt better in the last 4 1/2 weeks than I have in the last couple of years.  If you have read my list of symptoms entry this will be impressive, if you haven't you might check it out.. The only symptoms that I have experienced since the surgery have been slight balance issues, a few minor headaches that have managed to be squashed by the new migraine med cocktail they have given me, which is a huge deal for me because in 20 years we have never found anything that would touch them, and then the numbness and tingling.  So there have been HUGE improvements with the surgery, but of course, I still manage to end up frustrated.  The numbness and tingling in random places and often my entire body is just flat ANNOYING and I had very high hopes that that would be one of the improvements, and so far it doesn't show any signs of letting up.  While I do know that Dr. P has said it could be 6 months to a year before I would know how much of that was just angry pinched nerves and how much is actual nerve damage caused by the syrinx, it still is a massive reality check to me that I am not "fixed" and there is no cure for Chiari.  The last time I spoke with my neurosurgeon she said that I had to accept the Chiari as a chronic illness that was not going to go away and that I had to learn to accommodate it.  So, I will always have good and bad days, I will always have Mush Days, and I will never be normal again... not that I can claim I was normal prior to Chiari invading my life, but still, you get the picture.

Although the neurosurgeon considers me one of her worst surgical cases but one of her best improvement cases, my surgery is going to prove to be just the tip of the iceberg for my family dealing with Chiari.  My twin sister is showing some of the most blatant symptoms of Chiari and must be scanned soon, as well as my son is showing classic Chiari headaches and pain, which right now are responding to blood pressure medications, which most of us Chiarians know that if a blood pressure medication is controlling the headaches  they are because of increased pressure in the head.  Bouga has 11 MRIs and Dr. Grant has reviewed them.  He has told us that while it does look like it might be tight quarters in his head currently, he doesn't see any out right signs of Chiari, but we will have to monitor him closely as Chiari 1 often does not show up on scans until the patient is in their mid to late 20s.

So, right now, I am trying to assimilate to my new life and build my endurance back up to survive a day without break through medications and naps, and I am beginning to get out and do things that I had not been able to or willing to do for so long before surgery.  I am working on stairs and balance, and awaiting permission to drive again.  At this time my target for returning to work is the first of December, but we will see if I can get everyone else on board with that!!!  I did manage to survive the Halloween party, all dressed up and proudly showing off my new zipper, which meant the world to me since Halloween is my favorite holiday and I have not felt like going out for a Halloween party in a couple of years. My head later told me that going to a bar with loud music and dancing 3 weeks after brain surgery was not the smartest idea in the world, but it was great for my soul to get out and see my friends and know that there are important parts of my life that I AM going to get back.

In my down time I also have a new addition to my ink collection, a black and purple COURAGE on the inside of my right wrist.  Although the placement might surprise several that know me because I have always said I would never have a tattoo that I couldn't cover up, this just felt like the right place for it.  It seems like over the years having courage has become a constant for me, and the Serenity Prayer has always been a staple in my dealing with difficult situations.  "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."   Courage just seemed to fit me, and of course the purple shading is for Chiari awareness.

I have been completely humbled over the last few weeks to have learned the massive support system that was behind me during my surgery and continues to be behind me during my recovery. Friends, Family, Acquaintances, Facebook friends, family of friends, family of Facebook friends, and even people on Facebook and in prayer groups who have no idea who I am but learned of my Chiari Fight. I cannot thank everyone enough for the thoughts and prayers and love stretched out to me and my family and loved ones. God Bless each and every one who has added us to their thoughts, I fully believe it is because of that amazing support that I have done so well and continue to improve each and every day.