Thursday, June 20, 2013

3 Months Post-op

I know: I'm late.  Surgery was March 14, so it's a little more than three months post-op.  This past week, my husband and I moved to a new apartment.  It's a little smaller, so we've been sorting through everything and donating what we don't need.  It already feels pretty homey here, but it is hard being even further from our families.

So, I've missed a lot of updates along the way.  The biggest was our trip to Toledo to see Dr. Grubb's APNP, Beverly Karabin (specialist in dysautonomia).  It was a 6 hour drive each way, but it was worth it.  She validated my post-surgical experiences being most likely related to my dysautonomia.  The surgery, the medications, the bed-rest, the lack of sleep, and the lack of medication management in the hospital all contributed to a horrible crash of my autonomic nervous system.  She said to expect recovery to take nine to twelve months.  Until then, I need to be patient with my body, recognize that it is healing very slowly, and gradually increase activity as I am able.  To help with that, we are experimenting with some new meds.  I'm taking a very low dose of a beta blocker (Propranolol 5 mg) at bedtime.  This is to reduce the heart rate spikes that happen in my sleep, which should improve the restorative quality of sleep.  I think I am sleeping better on it, but I can only handle a very low dose before it starts affecting my blood pressure.  The other change is that I am taking Nuvigil to help with my daytime alertness.  It actually really does help!

I've also been able to discontinue Midodrine and Florinef.  Which means that my POTS is getting more under control.

I'm still having serious problems with muscle spasm in my neck and right shoulder.  Daily trigger point massage is the only thing keeping the tension-induced migraines away.  Unfortunately, we moved away from my physical therapist that was doing dry needling therapy on my trigger points, so we're managing on our own for now (meaning my husband is providing daily massages on all of the rocks in my neck).

I definitely have ups and downs during every day.  If I exert myself, I know I will have to spend some time resting, likely with reduced consciousness.  So, I just have to plan my life around that.  I am trying really hard to keep exercising, which is a challenge since I don't have a gym anymore.  But I do have my recumbent bike, which is the very best cardio exercise for me.  I'm also doing lunges and squats to build up my leg muscles when possible (although this past week, the work of moving has been exercise enough!).  So, every day still has its own challenges.

But, the improvements really are apparent at times.  On Tuesday, the weather was perfect, so Gustavo and I went to explore downtown Madison.  We took my wheelchair, but I didn't have to sit in it the whole time.  We went from the capitol to campus and back.  And we stopped for dinner along the way.  Then, we bought some groceries.  When we got home, I fully expected to crash, but I was actually able to do a little more organizing around the apartment that evening!

So, my endurance really does seem to be improving.  I still have migraine days.  I have times where I'm barely conscious.  But I have plenty of time to keep recovering (although financially, the sooner I can start working, the better).

EDIT: I forgot, I also got my butt kicked by an infection a couple weeks ago.  For a few days, I just couldn't wake up, my bp was really low and non-responsive to meds.  I could barely stand without blacking out.  Thank goodness, we figured out what was wrong (UTI) and it resolved pretty quickly with antibiotics.  Thank goodness we had COBRA insurance this month.  I really needed help to get through it.

Finally, we have put down a deposit on a new puppy, which we're expecting to get by the end of the summer.  I'm so excited!  We're getting a cockapoo.  Training and exercising a new puppy will be a good next step in my recovery, to get me moving again.  After a couple months of that, I hope to be well enough to take on some new piano students.  But I know I need to be patient with my body.  Little by little, I expect to continue to improve.  Long term prognosis is still unknown.  So, I don't know how well I will get.  I don't think I'll ever be very functional in the mornings.  I don't think I'll ever work a full time job.  But I am still getting everything I can out of life.  I am so grateful for these new moments of feeling more alert, more alive, and more capable.  I cherish the good times, and cope with the bad.  My family has been so supportive of me through yet another surgery.  I am so lucky to have them in my life.

Thanks for reading today.  Sorry for the lack of updates.