Wednesday, August 14, 2013

5 months Post-op

I had my 2nd total cranio-cervical fusion reconstruction exactly 5 months ago today.  It is a very difficult surgery.  Since I have dysautonomia and suspected mast cell problems, recovery is very prolonged.  It's not fair to judge the success of a surgery based on symptoms at 5 months.  It's better to check at 12 months, maybe even later.  But I'll try to look objectively and see what may be better.

The last month has been challenging.  I was sick with an upper respiratory virus, causing a sinus infection and bronchitis.  For those two weeks, my POTS symptoms were out of control: high tachycardia, lots of shortness of breath, some spells of hypotension, lowered level of consciousness.  Then, I got one of my 4 day migraines.  Luckily, the virus and migraine were gone by August 2, the day we picked up our new puppy!  His name is Charlie.  He is a sweet little Cockapoo.  I'm not allergic to him!  I completely adore this little guy.  Unfortunately, after 4 nights of poor sleep due to the puppy's cries, my whole system shut down.  I couldn't stay conscious, my digestion went crazy, spells of very low blood pressure, tachycardia, shortness of breath, couldn't take care of myself, much less my beloved little Charlie.  So, after 5 days with us, Charlie moved in with my mom.  She and my stepdad are willing to take care of him until he grows up a bit and until I am a bit recovered.  But I really miss him!  I tear up just thinking about him.

The thing is, with all of these complications, my progress has definitely had a setback.  So, I'm rebuilding again...starting with sleeping as much as I can at night, resting as needed during the day, and exercising every single day, as much as I safely can.  My well-being depends on a very delicate balance of rest, exercise, diet, fluids, medications, stress, and most importantly, sleep.  98% of my focus is currently devoted to getting all of these things right, so that I can devote the other 2% to actually living.  Hopefully, this proportion will improve, and I'll be able to participate more in life and work again in time.

The symptoms I'm dealing with the most this week are:
-tension headaches
-lowered consciousness
-loss of consciousness/passing out
-spells of hypotension (not orthostatic)
-shortness of breath
-temperature dysregulation
-exercise intolerance
-body pain
-digestion (usually C, now more D--(friends with IBS will understand)

When things are so hard, it's difficult to see the improvements.  But they are there!  I'll do my best to think of some, as it is important to see the big picture in these difficult times.
-As of today, I do not need to wear the collar at all times.  Admittedly, I've been weaning for a few weeks.  I'll still be wearing the rigid collar in the car and a soft collar as needed for comfort.
-Excluding the muscle tension/tension headaches, I feel capable of going without the collar for reasonable periods of time.  This is a good sign that I have a solid fusion.
-My swallowing has actually gotten better.  I still have good days and bad days with swallowing, but I'm not getting extremely bloated nearly as often!
-I can sit up for longer periods of time.  For less pain, I generally like to sit on the couch so I can rest my head.  But it's still upright, which is better than before surgery!!!
-Before my setback, I think my overall level of functioning was improved from pre-surgery.  I just have to rebuild to get back to that.  Before the setback, I was able to: get dressed most days, leave the house for short trips most days, socialize for about an hour at a time, and do a fair amount of walking (I had reached 1.25 miles.)

My POTS is not better yet.  I'm not to the point where I was before surgery yet.  That will probably take the rest of this year, or more.  This means that I use the wheelchair at times, and I can't stand for long periods of time.  My aerobic endurance is still very low, but I'm working on it every day.

My headaches are not really better.  I either have a tension headache or a migraine (or both!) every day. Either one can be debilitating, although the migraine is most always debilitating.

I am very lucky to have a supportive family.  I also feel very grateful today for a wonderful primary care doctor back in Illinois, who is helping me get what I need through this transition to living in a new area.

Thanks for checking in with me!  Little by little, I'm coming back.  Sorry this post was a bit scattered.  I'm feeling a bit scattered today.  The migraine doesn't help either.

I heard a really great quote yesterday, so I'll post it here:
"Life is mostly froth and bubble; two things stand like stone: Kindness in another's trouble, courage in your own."
--Adam Lindsay Gordon

*I almost forgot: photos of Charlie!  Charlie is my reason to get better.  My motivation to exercise every day.  I want to be healthy enough to bring him home!