Yes, it's thanksgiving week, and I have MUCH in which to be thankful. So, maybe I should start there??? No, I think I'll end there so I won't leave a completely bad taste in my mouth...lol!
Let me back up a bit to fill in some gaps of the past few weeks in regards to my health for those who are emailing me with questions. WOW...thanks, for caring and continuing to pray for me (us!). So here are some of the questions I get:
1. "What exactly is the illness?" I guess I don't really refer to it by name much...just because my family knows what it is and I assume they're the only ones who really reads this anyway. It's called dermatomyositis or for short, DM. "The cause of dermatomyositis is unknown. Experts think it may be due to a viral infection of the muscles or a problem with the body's immune system." (National Institute of Health).
2. "You don't look sick. What's going on?" DM is basically a muscle disease categorized by chronic muscle inflammation/deterioration accompanied by muscle weakness. It also has a lovely by a skin rash that goes along with it and for me looks like a sunburn. My fingernail cuticles are very brittle and have what looks like dried blood in them, but that along with the rash are the only outward appearances of something is a little "off" from the disease (but who really goes and inspects one's fingernails very often!).
3. "When did actually get sick?" Well, that's the million dollar question! My first symptoms of extreme muscle weakness began in mid-late February of this year. It became so extreme that I couldn't get out of bed, lift my head off my pillow, pick up my dinner plate, get dressed by myself or even cut my fingernails. After many months of putting some puzzle pieces together in regards to other related issues I've had for years I really think (KNOW) that this disease had been brewing in my body for probably years and then KABOOM...for some reason, it was like a big, honkin' MAC truck hit me big time in early March hence my first appointment with Dr Nathalie for help.
5. "You mentioned you had another IV steroid treatment a few weeks ago. What was the outcome?" Yes, due to a bad flare up with ear pain/itching/swelling, hearing loss, muscle weakness, and an elevated CPK number I had a 3 day IV steroid treatment again. I was put on an antibiotic as well. I guess it did help because the pain/swelling in my ear began to subside. Actually, the pain began to subside a bit the night before I started the IV and had just taken one dose of antibiotic. My ear then got worse again, went to an ENT and she said I had fluid in my middle ear that was causing the hearing loss. She put me on something to drain off the fluid. One ear got better, but now the other ear is doing the same thing. So, I've been saying, "Huh? What did you say?"..A LOT lately!!!
So, now...which brings me to another consult with another doctor who practices traditional eastern medicine. She graciously escorted me (so she could translate!) to a colleague of hers who is a physician and compounding pharmacist. It's definitely a paradigm shift in thinking/treatment. I was grateful for the consult and willingness to think outside the "western world" of medicinal thinking. It's something David and I are open to as longs as it doesn't get into weird stuff if you know what I mean. This was about 10 days ago.
Fast forward to yesterday's appointment with Dr. Nathalie to discuss that consult and determine my next step in treatment and update her on my ear situation. If you've been reading this blog at all, you know that we're continually asking for prayer, guidance and wisdom for David and me PLUS all doctors involved in my case. Well, I was hopeful going into this appointment and I had high expectations of leaving with a "plan"...a clear cut answer...a skip in my step. Hmmmm, not so for me. Instead, I left Dr. Nathalie with her seeing my tears and frustration (again!). She's SO patient with me! Now, David's been on a two day trip and I've been trying to reel in my emotions, hold it together for the girls, and again place my thoughts on the pure and lovely and all that is righteous...not an easy task for me to do at present.
So, here comes the ugliness that so spewed out me after I left my appointment. I needed to go to the market to pick up a few things. The security guard told me I had to put my purse in the locker....I got so mad. Embarrassing that it sent me over the top, but I've shopped at this market for almost year and have never been asked to stash my bag before shopping...uggh. I guess my teary eyed, swollen face with a new purse with two pretty cute little girls on me heels made me look pretty threatening to the grocery market employee??? So.... I, being the mature 40 year old that I am, rolled my eyes at the security guard and yelled at him that it's just my freakin' purse and left. Wasn't that SO kind of me!?!?!? Oh, brother..... I really need to get a life! I'm getting tired of having to ask forgiveness from my girls for doing random acts of stupidity!!! What a great role model....geesh!
I really think am back to the 1/2 delusional stage again (or maybe completely delusional stage!) due to the increase in steroid dosage and increase in ear/jaw pain which both are not letting me get good rest at night. Just call me Insomniac QUEEN! I cannot cope without some zzzzzzzzzzzzzzzzzzz.
Okay, enough of my dissertation and ranting and on to my THANKfulness..
1. My wonderful and supportive husband who has been my researcher and biggest cheerleader these past few weeks (months)! Thank you for your tenacity and loving me.
2. Dr. Nathalie who has been such a blessing to me and our entire family. She's kind, smart, patient, available, willing, and doesn't run the other direction and hide when she sees me coming in for an appointment!
3. Family and friends (and those I don't even know!) who are interceding on my family's behalf for healing, wisdom, discernment for me PLUS my doctors.
4. HOPE found in Christ alone and that HE always listens to my cries and doesn't let me go.
5. Our helper who has basically become part of our family...can't imagine my life without her right now. She cooks, cleans and climbs 4 flights of stairs to do our laundry! I couldn't physically do all these "normal" things without her in this season of my life- I could never have this back home.
6. Yunju who has offered to take Audrey An a couple of days a week to do some home school science and math with her two precious daughters. OH, what an unexpected blessing!!! Audrey An came home beaming yesterday! THANK YOU.
7. Dejan and Chrissy who didn't freak out on me when I ran into them after my physical therapy appointment today. Just seeing friends invoked a gush of tears....oh my! They graciously offered to take "Thing 1 and Thing 2" for the afternoon so I could get some rest. THANK YOU for being sensitive to your currently overly emotional expat friend : )
8. New day, new mercies.
9. Paula and Jerome who were able to bring back a prescription from another country that I couldn't get here.
10. That I'm able to get out of bed.
There...said it. feel better now. off to nappy land before hunky monkey and the girls come home. Just tryin' to keep it real!
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| Our THANKFUL turkey that we've been putting feathers on each day of November! He's pretty and plump wouldn't you say!?! |
1 comment:
Thanks for being real! Chip and I were wondering how you were doing so I checked on your blog. Glad I did. Now we know how to pray. I hate you're having such a tough time, but you are an inspiration whether you realize it or not. And your girls are going to have some awesome stories to share! Hope tomorrow is a better day and that you get some solid answers on treatment. Great Thanksgiving pictures!
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