2020 Medical Update

I get an incredible amount of questions from people asking about my health. Which has made me realize that I haven’t written about it in a while. And although that has been partially on purpose, I figured I may as well do an update for you. If you have no clue what I’m talking about (’cause I’m just going to jump right in, maybe start here.)

As I sat here, praying about this post, I asked myself what verses I would use to describe this journey God has placed me on. The first ones that came to mind were the words of Mary:

‘And Mary said,
“My soul magnifies the Lord,
and my spirit rejoices in God my Savior,
for he has looked on the humble estate of his servant.
For behold, from now on all generations will call me blessed;
for he who is mighty has done great things for me,
and holy is his name.’
Luke 1:46-49

Holy is his name. Yes! He has done great things for me! What a magnificent God we serve, who looks on us, who holds the details of life in his hands!

The short answer to “How’s your health?” is that there are good days and bad days. I’m thankful for both and how the Lord takes care of me on every one.

I don’t have seizures anymore, kept at bay with the meds. The side effects from the meds come and go but I recognize them better now which makes them lose a lot of their power. It’s amazing how well you can fight depression and fatigue once you know the source of it AND you know the One who holds joy and strength for you.

The headaches are still constant but the intensity varies from day to day. I’m used to them and only on really bad days do I feel like holding my head all day. There are days and weeks where I overdo it still. (Newsflash! I’m not perfect. 🙂 ) Days where I need more rest. I try not to get to the point of exhaustion as much as I used to.

I truly do mean those words of Mary. I have learned to focus less on myself and more on Jesus and others. I think that’s why I have difficulty answer the health question; I don’t sit and think about it and it’s not looming over me anymore. I’m blessed to be able to work again, run again, take walks with friends, serve at church, take biblical counseling classes, volunteer at our pregnancy resource center, and minister to those around me. At some points over the last few years, a lot of those things felt like impossibilities, but we serve a God who glories in our weaknesses.

So I guess you could say that maybe not much has changed except my perspective and attitude. And isn’t that what the Lord is always after anyways?? Above all else, he desires our full affections and worship and that is the place he has brought me to.

Holy is his name.

 

Pros of Memory Loss

I’ve shared before that I have a lot of trouble with memory retention. I used to have a superb memory but after I started having seizures and headaches, my memory level dropped waaaaayyy down. Part of it is because of the seizures and part is because of the meds. I already know all this. Some days, this really bothers me. I feel like an old lady but because I’m NOT old, I’m not given the same grace from those around me.

Today though, I’d like to talk about the UPSIDE of having less memory. Believe it or not, there are several things I’ve just recently started to notice that are great side effects of NOT being able to remember things!

1. I have become an expert in mnemonic devices. Don’t know what a mnemonic device is? It’s a memory device, usually a pattern of letters or numbers, that you associate with something else that helps you remember things. For instance, I could never remember the letters in my license plate. I knew they started with an H but the rest eluded me. Finally I came up with a mnemonic device for it. The letters are HNS. The was I remember it is He Never Stops. Which in my mind is short for He Never Stops Loving Us but I just realized it could also relate to people on the road. 🙂 Whatever way you go with a mnemonic device, it just has to be something that triggers YOUR brain! I have so many of them that people at work joke that I have one for everything!
2. I can surprise myself. I don’t normally consider myself a funny person but sometimes I write funny little notes on instructions for other people and then months later I find them and get to laugh at myself! I have also started putting a short note inside books I’ve read this year that recap the book for me so if I pull it out again I can remember. Those will be great to read when I forget what I wrote! This year, I went to decorate for Christmas and found that I didn’t have any lights so I went and got some. Later, not only did I find the lights I bought at the end of last year, but some decorative lights that I’ve been meaning to buy for FOREVER! It’s great when you can surprise yourself because you’ve totally forgotten what you’ve done.
3. I can reread books and re-watch shows. To be honest, I’d rather not have to reread books. There is a surplus of good books in the world and I always have too many on my hands to read. But the same cannot be said for TV shows. One of my favorite shows is The Great British Baking Show. A couple weeks ago, I went back and re-watched the first season, which I’ve already seen, just to get some baking inspiration. As all the bakers arrived, I suddenly realized I had NO CLUE who won that season. So I kept watching. People, I got all the way to the final on a show I’ve already watched and still didn’t know who was going to win! You might think this is really sad, but for me, I just enjoyed watching a show again that I really love.

And so while some days I stand and stare blankly at a customer who comes in every day, desperately trying to remember their name; other days I laugh at a hilarious password I created, use a mnemonic device to remember the differences between S and C corporations, and go home to watch a show I’ve blissfully forgotten. God has shown abounding grace towards me in this journey and I’m so thankful for that!

 

Before I Say Yes

Guys, I’ve fallen off the bandwagon. Totally. In fact, the wagon is so far ahead of me that I’m now running behind trying to catch up, gasping for breath. What wagon, you ask? The NO wagon.

I don’t know about you but opportunities to serve and help out are like flies on a hot day. They are swarming around me. And by nature I’m very much a YES! person. That word jumps into my mouth before I can choke it down. But over the past couple of years, I’ve had to watch it. My body and brain have been through a lot and I’ve had to step away from a lot of commitments. I learned to say NO.

Until recently, that is. Christmas came around and suddenly I found myself doing all these things. New Year and my schedule is packed. How did this happen? I ask myself. Ah, I fell off the NO bandwagon. Let me be clear that all of these are GOOD things! All of them! Some of them were asked of me, some I volunteered for, and some nobody volunteered for so I…ummm… volunteered for.

An idea that’s pretty popular in my church (and I think a lot of others too) right now is to “say YES before God asks you.” I first heard this phrase in relation to missions. And I get it- really, I do. I understand the heart attitude it’s driving at. The attitude that gives up what you desire in order to obey the Lord. The attitude that made Isaiah say, “Here I am! Send me.”

But sometimes, the RIGHT answer is NO. This is a rarely taught concept in the church. I was telling my schedule to someone the other day and he said to me, “You know you don’t have to save the world every month, right?” That really stuck with me. It is okay and sometimes RIGHT to say NO to good things. I would rather do a few things excellently than all things half way. Or more accurately, I would rather do a few things excellently and not have to take a week to recover every month because I’ve drained myself of everything I have.

The more I thought about this, the more I thought it would be wise to have a plan. A decision-making plan. So I literally wrote one up the other morning. It’s pretty simple:

Before saying YES:

1. Have I prayed about it?
2. Does this honor and glorify God?
3. Does this move me towards my life goals for this year?
4. Does this conflict with any previous commitments and/or work schedule?
5. Is the THOUGHT of this already stressing me out?

This has been SO helpful for me already! Freeing really! The first two are musts, the third is almost a must. That fourth is negotiable. My schedule is flexible but I want to stay committed to the things I’ve said YES to first. The Bible actually has a lot to say on following through on your word. (Eccl. 5:5, Matt. 5:33-37, Num. 30:1-2) So that’s important to me. That last one is a big one for me. Stress is a huge thing for someone with epilepsy and constant headaches. If just thinking about committing to something is giving me more stress, it’s probably not a good idea to do it. I’ve found the stress doesn’t go away, but usually increases. 🙂

I want to be wise with the time and energy that’s been given to me. It’s not endless (believe me, I KNOW.) So if I say NO to something you ask me to do, you can know that I’ve thought it through and prayed about it and it’s almost NEVER because I don’t want to do it. I just can’t always say YES.

 

The Art of Being an Old Lady

I love old people. I mean, I pretty much have to, considering the age my Dad is getting to be. Ha! I can’t wait till he reads this!

But seriously, old people are the cutest. Plus, they have a huge advantage over most of the population. Let me explain. Have you ever noticed that old people can pretty much say whatever they want (which is sometimes what everyone is thinking but doesn’t think it’s socially acceptable to say) and they get away with it?? For example, an old person that you may never have met can (and will) outright ask your relationship status in front of a group of people AND proceed to give you all sorts of advice OR set you up with a family member of theirs. Your initial thought will probably be that it’s not really any of their business but then something will click in the back of your head and whether consciously or not, your brain will tell you, “Oh don’t worry about it; it’s an old person and they can say whatever they want.”

What??! Why? And how do I get that status?? I can’t wait to be old. I’m sneakily storing up all sorts of embarrassing things to say and do- does anyone know the official “old” age?? I want to be extra prepared when I reach it.

I’ve been thinking about old people recently because I’ve been feeling old (but without the perks because I don’t think I’ve reached that magical age yet.) I’ve been tired a lot but that’s not what makes me feel old. I really feel like I’m losing my memory and it’s actually pretty sad for me. If you ask anyone, I used to have the best memory in the world. At my old job, I remembered everything. From long and strange passwords, to people’s names and faces, to things that I never should have known but somehow it got stuck in my head. People were always asking me if I knew such and such or if I knew where something of theirs was, even though there was no way I should know. And most times, I did.

But not now. A few weeks ago at work, I was learning how to make all the food for the hot lunch we offer. I had about 9 pans in the oven at once so it was a lot of multi-tasking. At one point, the lady teaching me had a pan of meat and I watched as she put a little bit of water in the bottom and then she was showing me how to put the sauce on the meat. By the time she had finished, I looked in the pan and said, “Now did you put water in there or is that just grease from the meat?” She looked at me kind of funny and that’s when I realized I had literally watched her put that water in less than 2 minutes before.

I’ve found that now I have to keep track of things a lot more whereas before I could just rely on my memory for everything. For instance, I rarely used to put things on my calendar because I just always remembered my schedule. NOPE. Doesn’t work that way now. EVERYTHING must go in my phone because I can’t trust my memory. I used to know the birthdays of my family members AND all the kids I babysat and now I have to sit and calculate my Mom and Dad’s ages (good thing I still remember what years they were born!) I used to keep my shopping list in my memory- bahahahahaha! That seems like a joke. I could be getting 2 things from the store and I would still need to put them in my phone to remember them.

Do you know how frustrating and sad this is?? I guess I didn’t really think that the memory loss part of epilepsy would happen to me. What I mean to say is, I pretty much FORGOT about it! I have so much more respect and patience for old people now! You need to ask me the same question 3 times because you can’t remember? You go right ahead! At the same time, once again, people expect that from an old person and they give a little bit of extra grace. But they don’t expect it from me. I started to notice how bad it was when my best friend would call me at night and ask how my day was, and I really couldn’t remember what I had done. So I would give a general answer and when she wanted specifics, I would have to really really think. It’s like my brain used to be a nice filing system and someone has gone in and dumped out all the folders and now I have to sift through them to find what I’m looking for.

So if you ask me how my week has been and I look confused and like I’m searching for an answer, I probably am. I’m trying to remember, literally, what happened this week.

Please give some patience while I try to figure it out.

And maybe a hint or two would be nice.

 

 

Dealing with Chronic Headaches

One of my co-workers walked by me and said, “Ugh, I have this headache today and it just won’t go away.” As he turned away to grab something, I literally had to clamp my mouth shut because the words, “Uhhh… I don’t want to hear it.” almost came out. After I redirected my thoughts and attitude, I said, “Aw man, I’m sorry. That really stinks, doesn’t it?”

What he doesn’t know is that I have had constant daily headaches for almost 2 years now. What does that mean? It means every single day I wake up with my head hurting and I go to bed with it hurting. The pain varies in intensity but it’s always there. There are things I know that make it worse such as: caffeine, sugar, lots of stress, exercise, social gatherings, loud noises, and the list goes on…and a few things that help such as: sleep, massages, and dark places. They aren’t migraines (I’ve had a few of those and boy are they terrible!) but more of a constant pressure with sharp pains here and there. I sometimes say that it would feel so much better if I could just poke a hole in my head to let out all the extra air that must be up there. So that being said, sometimes I can really relate to others with headaches and sometimes I have to remind myself to be compassionate.

Over the last couple months, since my seizures have stopped, I’ve been kind of holding out, hoping the headaches would dissolve too. But slowly, the thought has been growing on me that they might not go away. I hadn’t really considered that before, but veeerrrry slowly, God gave me grace to accept the idea that that may be the case. I started thinking of how I was supposed to adapt my life to these headaches, instead of sitting around waiting for them to leave. I’m not really a newbie to chronic pain (I’ve had back issues since I was about 11) but headaches somehow affect more of your life than other pain. They are exhausting in addition to the pain.

However, my neurologist and best friend have wanted me to see one of the headache specialists at Cleveland Clinic for a long time now so I finally agreed and went last week. Looking back it has occurred to me that as I prayed about the appointment, I never really prayed for him to have answers. I really just prayed that he would be a kind and compassionate person and that prayer was certainly answered. He sat and listened to me for over an hour and asked a lot of questions. He acknowledged how painful and frustrating these sort of headaches can be. He also admitted that they are very difficult to diagnose and are usually very resistant to treatment. I wasn’t a huge fan of being put on a medicine that he wasn’t sure would work and the side effects were tiredness and dizziness (I deal with enough of those!) so he gave me some natural supplements to try instead. I didn’t really feel disappointed or excited after the appointment because I hadn’t had any expectations for it anyway.

But now that it’s been confirmed that the headaches probably aren’t going away (short of a miracle from the Lord), I realize how many of my favorite activities are affected and how I didn’t really think this was going to be a long-term deal. I found myself stuck in a “What-if” rut the other day. Have you ever been there? I thought I was already surrendered to the idea of chronic pain but things like this started to run through my head: But what if I never run again without my head feeling like it’s going to explode? What if I can’t ever make it through a whole evening with my friends like I used to? What if I can’t sit and read for hours on end like I want to? What if helping out in nursery at church will always hurt my head this much?

Ha! And here I thought I was completely at peace with the whole idea! Again and again I countered those thoughts with the same verse: “Three times I pleaded with the Lord about this, that it should leave me. But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”
2 Cor. 12:8-9

To be honest, some days I don’t understand how God’s power is made perfect in my weakness, how everything is working out for my good, how I can count it all joy, or how light momentary affliction leads to an eternal weight of glory. BUT I do know that these are the promises I fully believe and cling to. It is SO helpful for me to remember that Paul also was afflicted with something and asked God to take it away and the answer was no!

And like Paul I need to learn that his grace is completely sufficient.