Today I’m going to share some hard won wisdom with you!
A friend of mine who also has CF said that we’re the “marines of health care.” And that’s true. We’ve had decades of experience working closely with doctors, hospitals, and medication regimens. And what we think of as obvious is not so obvious to the rest of humanity.
So I’m going to share some tips with you today to help you have better health!
I’m going to start with what is probably the most important tip:
Know your baseline.
What I mean by that is know yourself. How do you normally feel? What’s your general energy level? How much sleep do you normally need—and get—and what do you feel best with? (For me, it’s about nine hours.) How does caffeine affect you? (Or doesn’t it?)
All these things are your baseline—how you normally feel when you’re healthy and everything is chugging along just fine. This even includes stuff like how many times you normally go to the bathroom. (I’m not kidding. For a diabetic, this is important to know—and same with CF.)
You might not have thought about this before, but when you feel “off”, it’s because you’re unconsciously comparing your state to how you normally feel—aka, your baseline.
For example, my right hip tends to bother me on and off. It’s not a big deal, I’m aware of it, it’s been checked out. But if it suddenly became really painful, that would be an anomaly.
I knew that my blood glucose was really high, without even testing it, when I was dropping weight really easily and going to the bathroom more often, and carrying water around with me. Those are all not normal feelings for me.
Knowing how you feel—both physically and emotionally and mentally-is key to judging if something is wrong with you.
I knew that the type of insulin I was on over the summer was wrong for me—on a lot of levels—because I became a really awful person! I was snappy and lost my temper at everything and just hated everything, and this is not me!
So you have to know how you feel normally, so you know how you feel when you’re sick, or when something is off.
All drugs have side effects
The questions are: will you get side effects, and if you do, how bad are they?
People are generally shocked to hear that meds can cause problems. Yes, they can. Heck, water can cause problems if you drink too much of it. If you take too much Tylenol, your kidneys are not gonna be happy with you!
Every medication has side effects. Not every person will experience any, or all, of them.
But a side effect alone is not enough to not take the med.
For example: I used to take cipro for infections. People were always shocked. “Don’t you know that class of meds can cause tendon issues?!” they would cry.
Well, yes, I did (do) know that. But the thing is, I didn’t have a choice. This was what I had to take so, to be honest, I didn’t die.
I lost my hearing because of ototoxic meds. That was a choice we made, so I would not die.
Now, I can’t take cipro or any drugs in its class anymore, because my tendons are starting to get weird with it. I can’t tolerate it anymore. So that means I have fewer options for when I get sick.
I take prednisone daily. I have taken it for 15 years and I will take it until I die. It’s what’s causing all my blood glucose issues. But I can’t not take the pred. I tried to go off it. My body hated it. My joints, in particular, were not really happy. I take nexium, a proton pump inhibitor, even though I know it might cause bone issues and all sorts of other things, but reflux can lead to cancer and rejection, so, again—balancing act. I take immunosuppression meds, because I have to to stay alive, even though it ups my cancer risk by about a factor of ten, especially skin cancer.
Sometimes you start a med, have a rough few days, and then your body adjusts. Pre-transplant, I was on bactrim and cipro and a million other meds every day. At first, this was rough. Eventually, I got used to it.
The lesson here is, if you’re having side effect from a med, and it’s severe, then you need to talk to your doctor about it—especially if you’re having any sort of depression, anxiety, or suicidal ideation. Then, you must call your doctor IMMEDIATELY. This isn’t something to mess around with. Stop the med, talk to the doctor, figure out another plan! There are lots of meds out there! Find what works for you!
You have to be aware of how a med affects you. That goes back to knowing your baseline.
But yes, when you are taking a medication, your body might not like it. That doesn’t mean that it’s a bad drug. It just isn’t working for you, and that’s fine.
If you want to know the side effects of a med, they are easily google-able, or you can ask your pharmacist or your doctor. Every time I go to pick up meds, I get asked if I want to talk to the pharmacist about it. EVERY TIME. So, if you want to know, do that!
You have to know your medical history
You—as in, you yourself—must know your medical history. You must know what drugs you take and why. You must know the dosages. You must know what drugs you cannot take (if any). You have to know what is contraindicated for you.
For example: I can’t have MRIs. I can’t have PICC lines (it’s PICC, not PIC. Peripherally Inserted Central Catheter, folks.), because there aren’t any more spots for them! I can’t have zofran because it makes me vomit. These are all things I have learned and I often have to tell medical professionals these things. Because, they don’t know. Or they haven’t read my chart. (grumble grumble.)
My parents know these things as well. I have my med list and issue list on my phone so I can just whip it out in an ER or a new doctor’s office. It is a good idea to have someone else know your medical history so if you have to go somewhere in an emergency, that person can either say, yes, here’s the deal, or, “here it is on her phone.” (Now, for me, anyone who has read the book knows basically all of my medical history, ha!) I don’t expect people to be able to spout off all of it—except my parents, and they can do it—but I do have friends who know, OK, this is the deal. Especially when I travel with people, I have to tell them things that are relevant, like, me and the sun are not friends. I might have to stay inside for certain hours. I have to check my blood sugar. I might need you to get me juice. Etc.
But you have to be your own advocate. You have to say, I’m sorry, I can’t do that—and why. You have to say, I cannot take that med, or have that procedure, or whatever. (For Catholics, this also includes why you’re not taking birth control pills for contraceptive purposes! Not that you need to go all Humane Vitae on the doctor!)
Sometimes you have to talk doctors off ledges. Sometimes I get a new doctor who doesn’t realize I’m genetically anemic (I have thalassemia minor.) He’ll freak out when he sees my iron counts. But I’ve always been anemic, and we don’t do anything about it. It just is. I’m used to it!
And finally….
Be aware of change
Sometimes you’ll be on a med for awhile and you’ll be fine, and then you’ll notice…issues. That can happen. Sometimes a med builds up in your system and then it causes issues that were not apparent in the beginning. (Ototoxic meds, looking at you!) So if you have a chronic condition, you do need to evaluate. Again, know your baseline. Know what you’re being treated for. Sometimes I have to say, guys, this med isn’t working anymore. And we figure out something else.
Essentially, we all have to be aware of how we normally feel, what we’re taking, why we’re taking it, and our own health history. This enables you to be your own best advocate, which is vitally important.