Friday, March 28, 2014

Catching Up

It's been a rough few months.  In so many ways.  In late January, my grandma was diagnosed with stage 4 cancer.  She passed away six weeks later.  I’m very grateful that I was able to visit her many times.  I miss her so much.  But I am so grateful that I had her in my life for the last 30 years.  She was very special to very many people, and will be dearly missed.

Then, last week, it became clear to us that our little dog, Charlie, was just too much for anyone in my family to handle.  He is a very high energy dog, and at times he is destructive, even aggressive.  It was such a difficult decision, but we drove him back to the farm where we got him last week.  He is so sweet and loving much of the time, so it was really hard to say goodbye.  He looked so sad and scared when we left him.  It is really heart-breaking.  I've sent an email to the breeder to see how he's adjusting to life on the farm.

So, many tears have been and continue to be shed.

My health has continued to be challenging.  It has been just over a year since my last fusion revision.

Migraines:  My migraines are happening between 10 and 15 days each month.  They knock me out for the whole day.  Treatment will be continued management with Maxalt, ice, and heat.  The preventives really haven't been helpful or tolerable for me.

Mast Cells:  My mast cells calmed down for a while, but are acting up again this week.  Skin crawling and itching, bumpy rash on face and back, swollen eyelids and lips, itchy eyes, nose and throat.  Also deep pain and intense fatigue may be attributed to mast cells.  Treatment for now is managing with allergy medications, since there is no official diagnosis.

Consciousness and cognitive deficits:  These are still a daily battle for me.  I struggle to maintain consciousness many days, and I have so much trouble thinking clearly.  I have had some recent success with low-dose Ritalin, which gives me 2-3 hours of relative clarity.  Unfortunately, I usually have a crash as the medicine wears off.  My energy drops off quickly, and I have pain all over, along with waves of nausea.  This happens after any activity, really.

Muscle spasms:  My neck and upper back muscles are still very angry.  They require nearly daily massage and muscle relaxants.  Even with these measures, I have a constant tension headache that ranges from a 4-8 on the 10 point pain scale.  

Digestion:  Definitely improved.  I have to have small portions of easily digested foods throughout the day.  I also have to take a daily probiotic capsule.  (I use Digestive Advantage Intensive Bowel Support-from Amazon).  I still have some bad days, but it is so much better!

My overall pain level hasn't been lower than a 4 for a while now.  Frequently my body just hurts so much, all I can do is lay still and try to distract myself.

I'm sure there are many things I haven't mentioned, but it really is hard to think clearly, and is taking all of my energy and focus to get this out.  I'm definitely living in a painful haze most of the time.  But I'm in a place of emotional acceptance right now.  I'm not fighting it.  Just getting through each day as best as I can, with no plans to seek further treatment for anything in the near future.  I am very grateful every day to have a family that supports me through this difficult life.  I am very much looking forward to moving back to Illinois this summer, where I will be able to see family much more frequently, without the hassle of a long drive and packing bags.

I'll leave you with some photos of Grandma and Charlie.