End of Year On a High.

I have to memorialise what happened yesterday because I am astounded and grateful and I bitch so much about the healthcare in this country making so many of us go broke, but this was truly amazing.

On Monday, December 30th, for the hell of it (and prompted by something my friend, Rachel, posted), I decided to ask my brand new doctor (who doesn’t even know me; I was just dumped on her plate when my phenomenal primary care provider left the clinic) if there was any chance we could squeeze in an MRI before the end of the year because I had met my insurance’s out-of-pocket maximum expenditure for 2019 (meaning, in theory, I wouldn’t have to pay for anything else — and wouldn’t it be nice to get the MRI that one of my specialists requested for free?).

Astonishingly, she answered me the same day and said she had put in the order for the MRI, but she doubted it could happen because it needs a prior authorisation (PA) from insurance and that usually takes 8 days or more. I never expected her to read the message during this very busy time of the year, let alone answer it, let alone put in an order without seeing me in person. I was shocked — she trusted what I said in my email! Maybe I should stay with this doctor, after all.

So, yesterday, the LAST DAY OF THE YEAR, at 7:30am, I call my insurance to ask how long it would take to get the PA. They say to call another company, AIM.

I call AIM and they say the PA can only be expedited if the order is marked urgent and mine isn’t (and it definitely doesn’t warrant an urgent request, so I’m not going to pursue that). But they tell me there is a way to get it approved immediately — if the doctor calls them and answers questions over the phone.

I email my doctor to tell her this, making it clear that I understand she probably won’t see the email and wouldn’t have time to call AIM, regardless.

Then I call radiology to see if I can grab a same day appointment, just in case. Radiology Ryan tells me they have one opening left, but I can’t have it unless they have a PA in place.

Then my doctor’s medical assistant emails to say she can’t get a PA without my having an MRI appointment. Well, that’s a catch 22. And she needs a CPT code.

Meanwhile, throughout all of this, I am going to two big doctor appointments — end of year endocrinology and a 2-hour allergy testing for anesthetic agents — sending emails and making calls in between talking to doctors.

As soon as I’m back in the car, around 11:30am, I call Radiology Ryan and tell him my conundrum — that I need an appointment to get a PA. He says their rule only excludes same day appointments, so I can make one for the future just to secure the PA and, if it comes through, call back to reschedule for today. If the spot is still available. Ryan gives me a random January appointment, but tells me the doctor should provide the CPT code. Then, hearing my whimpering, he takes pity and looks up the code for a “lumbar MRI without contrast.”

I email the MA, tell her the code and my appointment date, and cross my fingers.

Soon after I get home, there’s a message from the MA saying she called AIM and got the PA. It’s a miracle!

I call Radiology Ryan. It’s now 1:30pm. He looks for the PA in his system, sees everything is in place, and tells me there’s still a 1:45pm MRI opening. And it’s on a 3T machine, which is what I need. Another miracle!

I shove some food in my face and dash over to the third hospital of the day, which is only 5 minutes away.

The woman behind the desk tells me I have beautiful eyes and my day just couldn’t get much better.

I fall asleep in the MRI (even a few minutes can help!) and then walk over to the medical records office and get copies of my imaging within 15 minutes.

All in all, it was 26.5 hours between my doctor’s MRI order and having my imaging discs in hand.

Mind blown. All of the people who contributed to getting this done deserve wine and chocolates, including the eye flatterer.

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Also, after being completely debilitated by head, neck and eye pain for three days, yesterday it completely eased up.

Also, it was a beautiful 7:40am drive downtown, a time that I’m rarely out of bed.

 

Also, my thyroid levels are dialed in.

Also, all of the skin prick and intradermal tests for medications were negative.

Also, I walked around the hospital by myself for the first time since I used to volunteer there 12 years ago. My husband usually pushes me in a wheelchair.

Also, we stopped briefly at a grocery store and I walked around like no big deal.

Also, the grocery store had tons of good salads in the deli, so I didn’t have to cook.

Also, I succeeded again in inserting my peripheral IV in a hard-to-access forearm vein and it is so much better to be able to move normally throughout the day without worrying about kinking something in the elbow or wrist.

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Also, although Penn kept me up most of the night with her fireworks panic, Riley has decided that he’s too old to give a shit and one terrified dog is definitely easier to deal with than two.

Also, I had the best Christmas health-wise since before I was sick. <– This last point is so exciting, it will get its own blog post.

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Happy new year, everyone!

You Make My Heartbeat Mo Mo More…

I’m a few years behind the times here, but I finally bought a heart rate monitor. I actually ordered one from Amazon ages ago when I was looking for a pedometer, but wound up returning it because I didn’t want to deal with the chest strap and bulky watch. Little did I know that it could be a very useful tool in managing ME. So, after watching this video made by Dr. Nancy Klimas, director of the CFS Clinic in Miami, I decided to buy another one with the goal of increasing my fitness level and muscle tone ~ carefully, over a long period of time. Apparently I still wasn’t convinced it was going to be a good investment because I went for the cheapest option with decent reviews and got this monitor made by Pyle. I don’t want to go to the trouble of returning it again, but, be warned: it is huge. It’s working and I’m managing to use it with consistent results, but the chest strap – as tight as you can make it – slips down a lot and I know there are straps and watches made for women out there. I wish I’d researched a bit more.

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You can see all three of Dr. Klimas’s videos and get more info at the Exercise Group page created by Dan Moricoli of the ME-CFS Community website (you might have to create a username and password to access it). If you are interested in more details, I recommend you read this article by Bruce Campbell and this post by Sue over at Learning to Live with CFS.

The upshot is, people with ME/CFS should stay in aerobic “exercise” because, once your body goes over the anaerobic threshold, it is using energy pulled from the muscles and this can cause post-exertional malaise. If you can’t afford to fly to Florida and get all the fancy testing, you can roughly calculate your anaerobic threshold as 60% of your maximum heart rate with the following formula: (220 – 50) x .6 For me, that is 108 bpm.

What I have learned in the last week of wearing the heart rate monitor is amazing. I set the alarm on the monitor to go off when I hit 105 bpm, which, it turns out, is a lot. Lying down, my heart rate is in the 60s. Sitting up, it is in the 70s. Doing any movement puts it in the 80s and 90s. The over-105 alarm goes off every time I stand up. It doesn’t stay up if I continue standing, but it takes a few minutes to come down. The alarm goes off when I do anything to do with laundry ~ the motion of reaching down, pulling sheets out of a washer or dryer jacks my pulse up and keeps it up. I’ve started to do laundry sitting on the ground, moving my arms carefully (luckily, we got front-loaders last year). The alarm goes off every time I climb the few stairs to the bathroom and, surprisingly, EVERY time I pour a glass of water and drink it. I don’t know if it is the action of pouring from the filter jug or lifting the glass to my mouth or swallowing or all of it. That’s some serious exercise! Whenever I take a bath, my heart rate stays high for a very long time afterwards. I drink a lot of water in case it is caused by low blood volume, but it doesn’t seem to help. The flip-side is, I can walk my laps around the garden without going over 100 bpms ~ as long as I don’t move too quickly and take little breaks. I’m still only doing 3 or 4 laps a few times each week. I CANNOT WAIT until I am able to take a proper walk. I just want to be able to walk for half an hour straight. In the dog park. It would be glorious.

If anyone has any experience with using the heart rate monitor program for ME and can give me advice, I would love it. I’m trying to figure out where the parameters are… I guess I just have to figure it out the old fashioned way: if I crash after activity, I did too much. My “better” days ended on Easter. I’m not feeling terrible, but I’m not feeling good. If those days of slightly-more-strength came back and stayed back, I could see myself working again. Maybe even thinking about life every day and not the incessant head-to-toe analysis of what my body is doing.

Note to E. and my brother T.: name that tune before you look: Title Credit.