We had to cancel dinner plans for the second time with friends Carol and Mark while we were in Cleveland. The first time was on Wednesday when, shortly before dinner, we went to the emergency room when I had horrific high blood pressure and heart rhythm issues after stopping the drug Flecainide six days earlier. Today is the second time.
Now, on the latest drug, Multaq, I am suffering from horrible side effects after three days on the drug. I can barely move. My arms and legs are weak and painful, and periodically, I find myself out of breath. I am determined to keep taking the drug until I’ve used the entire month’s supply.
After already trying five other drugs over the past few years with similar side effects that never stopped after continued use, I will be out of options. I’ll have no other choice than to take my chances and not treat my irregular high blood pressure and heart rhythm irregularities. That’s the way it is. In the meantime, nothing is required of me but to feel better. No place to go. No one to see. No obligations.
Between us, we’ll manage to make dinner each night, or, when necessary, we can order delivery, which is easy, although expensive. I found a healthy Asian delivery restaurant that makes fantastic bowls with kale, kimchee, lots of veggies, and chicken or beef. These are much healthier than Chipotle bowls. Tom likes Reuben and hot corned beef sandwiches and fries from a local deli.
We’ve been ordering enough for two nights, running about $100 with free delivery (free through Amazon Prime), tax, and tip. This averages $50 a night, more than buying groceries but less than dining out. We can make two to three dinners with what we have on hand, which we ordered from Costco, and order out for the rest. This will average about $300 per week, $100 more than if we cooked nightly.
With the hotel’s complimentary breakfast, which we partake in daily, Tom often doesn’t feel hungry for dinner since he eats more filling food than I do. But I always need to have a meal in the evening. It will all work out well.
Today, I considered not writing a post due to my extreme weakness and need to lie down. But, as patient as all of our readers have been, I at least wanted to post something and let you know that we are thinking of you, regardless of our current challenges.
Yesterday, our friends Marylin and Gary called to see how we’re doing after they’ve been in Marloth Park for many weeks. Several batches of family and friends visited one after another while they stayed in Louise’s house. It was delightful to hear how much fun they had these past few months, with one fantastic adventure after another. This only enhances our desire to return to Marloth Park once the weather cools down, closer to winter.
That’s it for today, folks. We’ll be back again soon.
Be well.
Photo from ten years ago today, September 9, 2014:
Hi Jess,
Thinking of you daily.
I really hope that a resolution to your health conditions can be found soon.
Take care and best wishes to you both.
Kim and Keith xx
Kim & Keith, thank you so much for writing once again with your kind words. You both mean the world to us.
Much love,
Jess & Tom
Hi Jess, sorry to hear about the side effects. I am sensitive or allergic to many meds (just the way my body is). It seems like doctors don’t take individuals’ body mechanisms into account when they prescribe.
My only answer to that has been to request medications in liquid form where possible and microdose until I get to an amount that stops symptoms but does not cause side effects or causes minimal side effects. I do this with my current heart med, a beta blocker, for heart issues. If you do decide to try something like that, you’d want to ask your doctor if there’s a pediatric liquid form as they usually can prescribe it when asked that way (even little kids need heart meds).
I don’t know what kind of considerations you’d need for this kind of med in other countries but it might be worth checking into if you can tweak the dosage enough to help and avoid the icky side effects. I also know that the beta blocker I’m on can cause similar side effects because of what it does to Mast cells so i take it with a liquid antihistamine that helps mitigate that. You coukd do some research on it and see what yours does to mast cells. I had to figure all this out on my own through much research, and trial and error. Much love and prayers to you. Lisa
Lisa, I so much appreciate your comments but most likely, if this drugs works for me, I won’t be able to obtain special variations of the drug in other countries. I will be lucky enough to find it at all outside the US so most likely will make dose adjustments before we leave the US, hopefully in a few months. But, your research is fascinating and fortunately has served you well.
Much love,
Jess
Hi Jessica, I was concerned when I couldn’t see the information about your problems.
Are you doing better? How are the meds helping? What are the doctors telling you what is wrong?
Thinking of you every day, miss and love you.
Sending all my love,
Cousin Phyllis
Phyllis, I sent you an email with the link to the post that explains everything we’ve discovered so far. Thanks for all ofyour love and concern.
Love you,
Jess & Tom