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In other words….Doctors, Friends… and Flares
Well let’s just dive right in…I’m getting my ass-kicked in a bad flare. One of the worst I have had in a long time. I was not myself last weekend, tired from my Man’s trip and just had no rally. I was even worried that I was depressed (I will post on anxiety and depression later this week)
So I should have realized, that I was tip-toeing into familiar territory, I fell asleep on the couch Monday night at 5pm. What mother can fall asleep during the craziest time of the day? Jeff walks-in and I was-out, at 8pm he sweetly kissed me and put me to bed… I slept till 7 am… That’s when I knew, I was in a full on flare…
Flares suck, they roll in like the tide sometimes slow and steady and other times like a typhoon… I HATE’em… I never make peace. I tolerate them, work to fix’em and move on… I endure them, I don’t thrive in them, I just persevere and wait them-out.
Monday, I went in for my weekly blood test. I walked into Harvard’s office, and I got the look… Now as women, we love the second look, it means you’re hot, you’ve got it going on, but when you have a chronic disease… it is the kiss of death. When you have a chronic illness you spend your whole life in cover mode. I own more foundation, concealer, cover-up… I cover the pasty grey-white color on my face, I’m better than the world’s best make-up artists! So if you get the second look, and you are not channeling your inner Sasha Fierce, you are screwed… The whole office gave me the second look…
So when you’re heading off the cliff, it is good to have some management strategies…
What do I do when I fall off the cliff? I raise the White Flag…
I did it this week, I posted on Facebook for prayers, which always helps and I send out the white flag email, this email goes to my nearest and dearest girls, the ones who can see me without a bra, without make-up, who understand that right now showers are just not happening. Within minutes, it’s all covered… My girls took my beauties, fed them, loved them, and gave them back good, happy and really tired. My Hawaii girl, sweet breezes and warm love, took my girl and fed us dinner. My Mini-A’s future mother-in law took my Irish prince, she is always waiting in the wings to be activated! (as an aside, it’s so important to pick your children’s spouses early. I feel good about committing in first grade, it makes wedding planning so much easier when all parties agree on scotch and bourbon).
So that is part of my white flag strategies, know who has your back and don’t be afraid or too proud to raise the flag when you really need the help.
The other strategy, is dealing with your doctors…
How do I work with my doctors? It’s a partnership. When you have a chronic disease you need to understand that sometimes you will spend more “quality” time with your doctors than your close friends…. You develop a short-hand and all good relationships require work… You need to own your stuff, your weaknesses, and realize that you have to be willing to negotiate… I’m an advocate for myself, and I also know that I can be wrong just as often as I’m right!
I’m not willing to leave any stone unturned… and that’s what raising the white flag means to me…You are willing to look at everything, try any specialist, go anywhere, because all it takes is one person who says, ”I’ve seen that”… When I sat in NIH and met a top expert and for 30 minutes he kept talking to himself saying, “Wow! You really are the real deal, I have never seen anyone hive the way you do… you are really sick.” And he went on to marvel that I was able to function at all…. Well I was relived; finally someone who saw the real me…
I may be unique, but I’m not alone, there are lots of us out there, people who don’t fall into the cookie-cutter mold for medicine… And that’s why you stay tough, stay focused.
I write this blog, absolutely as a record for my kids… But maybe even more importantly, for other Chronic Disease suffers, the peeps who love them, for the family members who struggle to understand. I hear all of you, I get you, I’m in the trenches, and battling this broken medical system, fighting for treatment, expecting the best will come.
I know that this illness and yours is horrible, but if I can from my green couch, share my experiences so your pilgrimage is a little easier…Then my pilgrimage has been given a purpose. If you love someone with an illness that you just don’t understand, I get it all the time… I hear you…just keep searching…
Don’t forget, you know your body, don’t ever let anyone tell you otherwise.
Raising the white flag, does not mean, you roll over or quit ever... I do stand firm, I HATE, steroids, they are a blessing and curse… Prednisone will shut down my inflammation, it will make breathing, and pain better… But, it has some nasty side-effects, for it makes me anxious, keeps me up all night, makes me bloated, hungry and grumpy… I have to be really, really bad before I’ll agree to take them… and Harvard and I have an understanding. On Friday, he said, “You have the weekend to get better, on Monday if you are not improved its Prednisone” He told me the stupid icky high dosage and it’s not negotiable. And I made the face. “Fine Monday”…This is our dance…This is how it works for our negotiation. Come Monday, it’s all about honesty…
I had to fly the white flag to get through Friday. Sunday has been better. I hope on Monday I’ll be able to take the flag down and make it through…. But each day brings a new adventure…
If you would like to join me on this pilgrimage, filled with my bad spelling, self-invented grammar, and over all foolishness… Click on the web version of this post and look for the “GET PILGRIMAGEGAL UPDATES VIA EMAIL” option at the top of the right border.