Jul 13, 2016

Oscar Wilde wrote: “In this world there are only two tragedies. One is not getting what one wants, and the other is getting it.” To rephrase his thought, I suggest there are likewise only two joys. One is having God answer all your prayers; the other is not receiving the answer to all your prayers. I believe this because I have found that God knows my needs infinitely better than I know them. And He is utterly dependable, no matter which direction our circumstances take us. ~Joni Eareckson Tada


Hey friends,


Thank you for always checking in and reading my blog. 🙂  It means a lot to me as I continue on this journey!


Can’t remember if I ever mentioned this, but I’ve been dealing with daily hives/itching for more than a year now.  My eosinophils (a type of white blood cell that increases with inflammation/allergic reactions) have also been getting pretty high.  My hematologist said we’ll keep monitoring this and run more tests if they get to a certain level.


But the hives/itching makes me so miserable, so in April or so of this year, I finally went to see an allergy/immunology doctor.  She suspects I have a mast cell disorder, and she even mentioned that she sees this often with EDS and mito.  I’m thankful for answers, but I do wish it wasn’t another condition to add to my ever growing list. 🙁  I had lots of food allergy testing which shows that I react to pretty much all the foods I can eat (basically, eggs, dairy, oats, soy, etc.). 🙁  All those foods are the only things I can really tolerate with my GI dysmotility. :/  These food reactions are related to my mast cells which are too hyper.  So I was put on a mast cell stabilizer medication—it helped immensely!  But only for a little while. 🙁  Either its effectiveness decreased or the mast cell disorder has worsened…but I can’t increase the med dosage at this point because my insurance doesn’t cover compounded meds.  So now I’m to trial some other things in addition to what I’m currently taking.


I’m blessed to have a knowledgeable doctor!  She knows a lot about how mast cells are related to EDS and mito.  I’d explain it here, but I don’t fully understand it myself. lol


I saw my new PCP at OHSU recently, and she is amazing!  She exceeded my expectations and is so kind and compassionate.  She has several pediatric patients with mito!  She’s going to try to make my “coordination of care” even better.  I see her again the beginning of August.


This past Monday, I saw my orthopaedic hip surgeon for follow-up.  She discussed the surgery in more detail and drew us a diagram of the hip socket and labrum.  She explained about the risks/potential complications with surgery and wrote down the plan for rehabilitation.  I have Pre-op on July 29th, and I’ll be seeing the peri-operative medicine dr. instead of the nurse practitioner as originally scheduled since my case is so complex.  After surgery, I’ll be sent home with a machine called Continuous Passive Motion.  This machine will move my leg passively to prevent scar tissue formation in the joint and so that my hip/leg doesn’t get stiff.  I’ll have to use it for 4-6 hours a day. :O


This past Sunday night, I had a bad episode of vomiting. 🙁  That’s what happened the two weeks before I became septic in March.  Praying another central line infection isn’t brewing.  I saw my GI dr. today, and he ordered blood cultures to be drawn when my home health nurse comes tomorrow to draw my regular labs.  My liver function lab tests have been increasing as well, and my platelets are the lowest they’ve ever been.  Both can indicate infection, so we’ll see if the cultures grow.. 🙁  Even if infection is ruled out, my GI dr. said something is going on regardless.  I haven’t been feeling my normal this week.


P.S. My family and I had a wonderful time at the coast last week!  We played lots of games, watched movies together, and put together a 750-piece Beauty and the Beast puzzle—the beach house was so nice!  We also went to the beach a couple of times.  And my physical therapist was so happy to hear that I tried walking a little on the sand, despite the muscle weakness and fatigue. 🙂  My muscles got tired so fast, but it was nice to stand on the beach!!



me and my older sister 🙂

sunset in Pacific City

sunset in Pacific City

me and my IV backpack!

me and my IV backpack



From left to right: my older brother, me, my younger brother, and my older sister :)

From left to right: my older brother, me, my younger brother, and my older sister 🙂 <3

Post written byKerissa

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