Hey again

May 12, 2011 at 6:25 pm (Uncategorized)

I just didn’t feel like writing for a while.  Basically same ole’ same ole.

Well it’s not so same ole’ anymore.  Symptomatically – same garbage as goes on constantly: joints/connective tissue problems, brain fog, stupid ear/sinus congestion that I have to keep from getting infected, edema, fatigue.  Ups and downs.

The new stuff!  There are some new people in my life.  We are enjoying the new church we are going to, more than that I feel more fed and energized for daily living to His glory – more love.  The prayer group is awesome.

Also, I have a new face-to-face friend.  I haven’t had one of those in THREE YEARS.  And no it’s not because of Lyme that I lost my childhood best friend – crazy family/church situ ripped us apart.  Yet, three years without a local friend at all, is a very long and lonely time.  So I spend the weekends with my new friends.  I pretend to be normal, even eat a little gelato, have a great time – and crash for the rest of the week.  I can’t keep up my weekends of pretending to be normal.  My friend saw this clearly on Sunday last weekend.  My body was just done, but I pushed for more, so I was sitting outside in a chair for three hours at a great graduation ceremony.  I spent and hour of it in front of God and everybody resting my head on my lap – feeling very very weak, kidneys in agony, maintaining my strength to make it home.  After that I had moderate hypoglycemic episode because it took so long to get to eat.  And I did the impossible:  Gluten free at Cracker Barrel (they don’t offer that).  Even though no alcohol is involved – it is physically as hard on you as it would be to go get drunk every weekend of your life!  But emotionally – It’s profound.  Just writing about it makes me cry.  I have really been so alone.  I keep myself occupied with GOOD internet friends.  but it’s NOT the same as having someone who calls you, and actually drops by your house.  I told her this week…if you stop by my house for any reason, PLEASE come right on up to my room – even if I’m sleeping and you wake me, I’m glad to see you.  What I like most about her is her heart….her honesty and warmth.  Thanks Natalie.

My paragraph about my new local friend doesn’t discount the deep friendship with people I would consider part of my “tribe.”  There is an inexplicable connection with my tribe….I love you guys!

I’m 2 weeks back in ACT classes too.  Very thankful for this.  There is, in a sense, new pathology, since I took the break from ACT.  The kidney stuff went awry during the break, and I also got that sinus/ear infection that will only 90% go away and I stay congested in my ears constantly.  I may be only 2 weeks back in but I know it’s what I need and I’m thankful to be back on course – we’re making headway in places we couldn’t before.  Been herxing this week – on top of exhaustion!

I’m a bit anxious to hear from Shoemaker on exactly what my HLA DRB DQB means – one bad detox gene, or two??  If I can get that oen good allele to dominate then I’d be good to go…  I think?  That stuff is confusing.   I’ve been being the ultimate Swaggernaut to get Swagbucks to trade for 2 $5 Amazon cards to get the book “Surviving Mold” on Kindle.  Complete geek-talk I know. hehe.

Still dealing with edema.  I’m better at catching when to take the diuretic.  What I hate is the low potassium – waiting for another blood test to be ordered to know if it’s any better after supplementation.  I feel drained of more than potassium though – it makes the POTS symptoms sooo much worse.  I feel lost in a really big way and I’m not sure which way is up.  I’m ok as long as there’s someone to talk to.  And hate to say it…but mommy is FAR from enough.  People who know me understand this.  At least I don’t panic unless it’s late at night and I don’t want to sleep despite being tired out of my head.  Hoping that improves soon.  it seems natural things for sleep make me depressed rather than help sleep for more than a week.  Oh well.

There’s other stuff to talk about, but hopefully I’ll write about it soon.  Oh…put out vibes for Mayday in DC!!!  I do want to go.  I haven’t felt like doing advocacy for May.  Too caught up in my own life.  But if MayDay can happen and me be there…I will be sooooo happy!