Prepare to be Unprepared

Chronic illnesses bring a host of changes and adjustments. Many of them seem reasonable and predictable: medications, therapies, lousy days, good days, remitting and relapsing flares. The list goes on. Some changes are not so predictable. Some of them you just shake your head and say, "Oh well." I've been pondering some of those changes that I was not (and you might not be) prepared for.

That's right, Goat. Just sit back for this list. Nice beard by the way.

Admitting it's time for a pill organizer
I must say, this is one I really wanted to avoid. However, in the last year, so many medications have been added, it's just easier to fill an organizer than to open each pill bottle individually every morning and every night. Of course, sometimes the organizer is too small, so you have to adjust which meds go in AM and which in PM. I had to move my dairy supplement and B vitamin to PM because with the over-sized alpha lipoic acid capsule, the AM wouldn't close. Moments like that you just get this sinking feeling of being officially sick. Gone are the days when I had a short list that was simple to manage.

 I do find taking them all in one swallow to be useful. 

Just get them all down without any sticking to your tongue is the goal.

Forgetting which side effect goes with which medication
You read the inserts the pharmacy gives you. You read about the medication online. You know what emergency side effect to look for until, you forget which is which. Sometimes you have so many prescription medications and have so many switches all at once, you get mixed up on which med causes what. Once in a while, you know that more than one med causes the same side effect. Your mind gets overwhelmed so that when you sit in one doctor's office and report a current malady, all you can say is, "One of my meds causes that." It's easy to lose track.

That's OK, Jay. I don't need that flashy thing to forget.

Speaking of side effects, weird ones happen
Migraine medications often come from classes of drugs used for seizures, bipolar disorder, and schizophrenia. With these meds, you need to titrate to the correct level. Some even require titrate down before making a switch. Take my switch from Topamax to Lamictal. Topamax was awful and required gradual steps up and steps back down to avoid seizures. Lamictal requires a step up as well. What I wasn't prepared for when stepping up on the Lamictal was the nightmares and sleep paralysis. Holy crap! I've always had vivid dreams, but these nightmares scared the bejeezus out of me. Many of them required me to tell myself it was not real and to wake the fuck up. Lamictal also causes tremors or jerky movements that make you drop things, unexpectedly toss things, or flop your limbs around without meaning to.The Benlysta I'm on causes night sweats. Gee, thanks for that. I love soaking my sheets in the middle of the night while also being terrified of the girl whose face distorts into some sort of ghoul as she reaches to grab my hand. Good times.

Yup. Weirder than even whatever the hell is going on in this GIF.

Some side effects actually cause the symptoms of another condition
This seems totally counter-intuitive. However, it's fairly common. Take anti-inflammatory drugs even though you have Von Willebrands Disease so that people constantly ask you what you did to get the awful bruises that decorate your legs. Take this muscle relaxant for your fibromyalgia despite it causing considerable dry mouth to exacerbate your Sjogrens. Take this Benlysta for your lupus, but be warned it causes migraines, which you already have and the medications for it give you nightmares. You just can't win sometimes.

Yes, Doctor. It totally earns a massive head smack.

Instead of one doctor, you have a host of them
I currently have five doctors who treat the various conditions I have not including my eye doctor and dentist who also need to be informed of things. It gets problematic to get test results to everyone. Sometimes it takes three or four calls to get something faxed from one to another.  That's annoying, but not as annoying as reviewing your meds every time you see a doctor. Bear in mind, some of these doctors you see two or three times a year. Some work in the same medical facility, which means they have access to your record already. Sometimes you just want to shout at them all just to look at the updated last notation on the file and trust that the med list and allergy list are correct as is. Believe me, if I have a med change, I will notify you. When you ask, "Are there any med changes?" and I say no. Accept that rather than review the damn things anyway.

At least this is not one of my doctors.

You will get patronizing questions even from the best doctors 
When I say I had blisters on my scalp, I mean I had blisters on my scalp. One doctor who I trust implicitly asked me if I was sure they were blisters and not pimples. I replied that as someone who has had acne since puberty, I can tell the difference between blisters and pimples or ingrown hairs. When I say I'm tired a lot, I am tired a lot. It does not mean I have depression. It means I have lupus and migraines and I take Benlysta and Lamictal, which can cause insomnia. And oh yeah, sometimes I have nightmares from the Lamictal, which makes it difficult to get a good night's sleep. Without a good night's rest, I am tired the next day. It's not hard to figure out and please don't try to add another med to the mix especially one that I know will make me lose my libido or want to kill myself. Been there; done that. No thanks.

 If even Captain Obvious is rolling his eyes, you know something's not right.

You get Vacation Hangover

It does not matter how fantastic your trip was. You will come home and need recovery time. You may be brain-fogged out. You may get a migraine that puts you in bed. You may just need oodles of rest before you even think about unpacking. It blows. Accept it. Take care of you.

It will still make you Clint Eastwood grumpy, but take your time anyway.

You get sick of hearing how wonderful yoga is for everything

Don't get me wrong. I love starting my day with yoga. When my hip flexors are tight, only yoga works them out. However, when you tell someone that you have a condition like lupus, migraines, or fibromyalgia, yoga is the first thing they suggest/ask you if you've tried. Yoga is not a cure all. It does help, but lordy! Stop already. It's been around and been popular long enough everyone knows about its benefits.

Even Owl is tired of hearing about it.

There you have it. I may need to add to this list later, but these are the ones that made the list so far. These are the things that make you crazy when you think about them and cause you to knit your brow. It's all just part of life with chronic conditions. 

OK, Moose. I'll try to remember that.

photo from Northwest Trek