Dear Lupus Flare

Dear Lupus Flare,

Hi there. It appears we are getting to know each other real well this week. I get it, trust me, I got the memo, YOU are not a fan of the sun, or stress, or maybe even the chickpea salad that I made over the weekend  that was oh so tasty. Please stop. You put me on notice. I’ve listened, I’ve lessened my time outside, I’ve even seen my doctor 3 times this week because of you.

I wish you or someone could explain to me why you are messing with my INR so bad. It had been so stable for almost 2 whole months. What gives? This past week you caused me to have THREE INR tests, at THREE different appointments on THREE different days. Monday was low enough, 2.4 isn’t cool man! Tuesday showed hope of rebounding when I was back at the office. That’s the day we figured out we were dealing with you. Dr. C gave me the option of starting Prednisone at that point or riding you out and letting you pass on your own.  I didn’t take into account that not all flares show up as pain. At least we figured it out. At that appointment Dr. C said to come back Friday (Monday at the latest) to see Cindy for my INR check. I chose to keep in on Friday since my INR was low the previous day. See…. I’ve already learned I can not trust you.

My choice not to start Prednisone on Tuesday was based on the fact that my INR was 2.7 on Tuesday so I thought, ‘Meh, if the pain doesn’t get any worse, I’ll leave things be.’  That was a mistake on my part, trust me….that mistake will not be made again.

Wednesday, was crap. If I hadn’t of known better I would have sworn I was coming down with the flu. I felt like utter poop. Thanks for that. I got a lot of snuggle time in with my pets, caught up on emails, and got some quality chat time in with some friends I hadn’t talked to in a while. So by sidelining me you actually helped me slow down enough to catch up with the loves in my life. Thank you for showing me I need to slow down. Thursday came and I didn’t feel much better, less flu-like, but still ran down and crappy. I mustered up the energy to shower and prep my meds for the following week, ate meals and well that’s about it.

Friday morning arrived and we headed to see Cindy. You can imagine (no you can’t) my frustration and disappointment when I saw 2.3 on the screen as the INR machine finished processing my result. After reminding Cindy this was way too low for me, (Remember my Range is 3-3.5-4ish? Yea) She went and grabbed Dr. C. I felt horrible, I was supposed to just see her. I wasn’t on his schedule and then all of a sudden, here I was a random patient added to his probably already busy schedule. I can’t begin to express how appreciative I was that he was willing that do that. I know there are plenty of doctors that would not of. Luckily my doctor….is not like most doctors.

He came in, talked to me, decided to call and involve my Hematologist in the process, and all of a sudden two doctors were being involved in this issue. Do you understand why this frustrates me? (I know you don’t). He had called Dr. M to see if we should do a Lovenox Bridge to tide me over while my INR rebounded. Lovenox is a different anticoagulant that works on a different clotting cascade that does not react to Vitamin K and the other things that Warfarin interacts with. His thoughts were, it would be sort of like an insurance policy while I came back into range. There are several issues though. Even with insurance, its expensive, it would be 1-2 injections I’d have to give myself a day, bleeding risks are slightly higher, and I’d have to come in for at least 2 more INRs in range before I could come off of it. So in a way it was great news when Dr. M said we didn’t need to do the bridge. Apparently with my Anticardiolipin Titers as low as they were last time, I am at a lower clotting risk right now. So at least that is good news. So we decided I’m on 17.5mg until Monday and I’ll see him then to get my INR rechecked.

Oh, did I forget to mention…..the  Prednisone? Yep you are on notice Flare. Your days here are numbered.

Goodbye at the soonest and no love,

Nicole

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8 thoughts on “Dear Lupus Flare

    1. This is true. It’s been a learning experience. And knowledge is what is needed to navigate these situations. I’ll know more next time around. That should mean less stress, being able to spot the warning signs of a flare sooner, and well knowing that I can’t over do it in the sun…even if I’m wearing sunscreen.

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    1. Nance yep it’s been a crazy week. Here’s to hoping for better news on Monday. Shoot I’ll take a high INR on Monday vs another low INR!!!! My PCP had been phenomenal and very accommodating this week. I’m fortunate that he was able to get me in quickly and was able to work me in to his schedule Friday since I was on his nurse’s schedule Friday. Also really thankful Dr. M had the time to field the call Friday about the situation. A whole lot of gratitude for those two men!!

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  1. I had just made a post about all the medical decisions we have to make living with lupus and then I read your article and it’s a case in point!

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    1. I will check it out this evening when I’m back around my laptop and can sit down and read it. Lupus definitely makes us make decisions at time that the general population never has to think about. Can’t wait to read your post!

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