it's frustrating and yet praiseworthy...

UPDATE:

I was going to mention this later, but figured that the rest of this will make way more sense if I just say it now…I’m not better yet…in fact, I’m worse than I was this past fall…I probably overdid things when I went back to school like I always do because I tend to start out fall semester trying pretty hard to do everything and stay on top of assignments and then about a third of the way through I start slipping and it tends to go downhill from there because I get myself too worn out…then spring semester I start out the same way except that Christmas break isn’t long enough for me to get rested up enough so I end up starting spring semester out still partially worn out from fall semester and by about spring break I’m about done-for with yet another 8+ weeks of school left. For this reason as well as a complete lack of finances, I didn’t go back to school after Christmas break this year. Instead, I stayed home and tried to get rested up for a few weeks and then started an extremely low-paying part-time job. That went fine until the last few weeks since I’ve started getting all worn out again except I’m not really sure what I did this time because I didn’t jump into this job full-throttle. It’s a childcare job in a couple’s home watching their 23-month-old child 2 days a week and is therefore pretty relaxed, and isn’t really all that hard except that I work 9 hours each day most weeks and this tends to wear me out a bit…also starting this summer, my hours one day a week will be cut back from 9 hours each day down to 6 hours. Also this couple is expecting their 2^nd child this coming Dec. and consequently may not need me to keep working past October if she decides to quit working altogether. I’ve also been doing a data entry job as an additional part-time job to try to help out since my pay keeps decreasing with the childcare job. Consequently, I’m worn out and need to figure out a way to keep a job to pay my school bills which will come due soon while not completely wearing myself out.

INFORMATION:

Lately, I’ve realized once again how frustrating it is when people keep asking me if I’m better because I either don't know what to say or I don't have better news and would rather not bother them with my struggles.

First off, what everyone should know about Chiari malformation and Chiari decompression surgery is that the surgery is the most aggressive form of treatment but it is not a cure; also, since there is no cure, more/worsening symptoms are likely to occur, meds make my mind get so foggy that I refuse to take any anymore, and chances are the answer to your question "how are you feeling?" is probably not a "much better" kind of answer. So if you don't want to take the time to hear about how some things are better but the weather makes it all worse and how I have allergies, then don't ask that question...either ask how I’m feeling that particular day or just skip that question and ask one that you will wait around for the answer to. I really don't like being asked how I’m feeling in general…I mean I understand asking sometimes just not all the time…because it makes me think once again about how I feel which is sometimes kinda depressing, but if someone really wants to know then they should ask when they are actually willing to take the time to listen. Yes, I did just say that I’m not a huge fan about being asked how I feel all the time because I don’t like focusing on myself…partly because it seems selfish and partly because it can make me more depressed…it can also make me feel almost as if I’m trying to get attention because I’m “still not better yet” and that’s not how I feel...but sometimes I feel so much like everyone’s expecting the “I feel so much better” answer that they react in a way that makes me think I should’ve answer differently even though what I said was true.

Another thing about Chiari: I live a completely different life than most of you. I work, relax, sleep, run errands, hang out, etc…all while in pain, and sometimes while nauseous. Rainy weather and allergy season make everything even worse than normal. This means that if I have things that I have to do, regardless of how I feel, I will do my best to do them. Part of the time, I have trouble sleeping because of the pain, so I’ve been tired for a good portion of my life. If you want me to go shopping with you, great! I’ll probably go if I at all feel like a can but realize that by the end my feet will probably be hurting worse than you can imagine. Or if you want to watch TV or a movie, fine but if I leave part-way through it’s probably because the noise hurts my head and I’ll be back if I can as soon as I feel better…if you want me to stay the whole time, then turn the volume down and use the captions. Also realize that if I make it anywhere before noon, I’m probably running on even less sleep than normal and am probably very tired so consider yourself pretty important because I honestly don’t get up early for much. I recently had to run some errands with my mom because she needed my help with some things and she kept asking if I was sure I felt like going because I had a migraine, but we had a deadline and I knew that it was something that we had to get finished that night so I went anyways. So just because I show up for something doesn’t mean I feel good, it just means that either that something is super important or it’s fairly important and I think I can survive because I’m not anticipating loud noise at that particular place or event.

A third thing about Chiari (and probably the most important thing): is that you should NOT under any circumstances touch my head!!!!! People do it all the time and I don’t know why but it almost always gives me a migraine!!! If you’ve done it before, I’ve probably asked you not to; and, if you do it again (unless you’re one of my grammas), I’ll probably either yell at you or if it’s happened a lot or you’re just not listening I might even shove your hand away. I don’t go around touching other people’s heads and there’s no reason you should touch mine! I don’t care that I got my hair cut! You can look at it all you want, but that’s it!!!

I’m really not upset; I just get frustrated from time to time with certain things. I also wanted to explain to everyone that this life that I live is very different from that of the average person. You get sick days for when you don’t feel good because that doesn’t happen as often, I don’t except when I’m actually running a temperature or puking because I don’t feel very good most of the time. Maybe, if you read this, you’ll understand me better, or maybe you’ll ask different questions about specific challenges I face or questions that maybe don’t need a lengthy answer if you’re rushed, or maybe you’ll remember not to touch my head and not to let others touch it either.

ENCOURAGEMENT:
I’m also not trying to make you all depressed…this condition may sound horrible, and some days that’s not too far off, but it still serves as a constant reminder that I can’t keep going without God’s assistance. It serves as a physical reminder of something that seems to be a very forgotten thing…continual prayer. I’m not saying that you all don’t pray, but do you pray continually? It’s Biblical.

1 Thessalonians 5:16-18
“¹⁶ Be joyful always;
¹⁷ pray continually;
¹⁸ give thanks in all circumstances,
for this is God’s will for you in Christ Jesus.”

The verses about being joyful always and giving thanks in all circumstances are the portions I’m trying focus on now. I just finished reading The Hiding Place by Corrie ten Boom. In one part of the story, they were assigned to a barracks that was thoroughly infested with fleas, and Betsie and Corrie had discussed the verses from 1 Thessalonians 5 that I just posted and were thinking of things they could be thankful for and Betsie wanted to thank God for the fleas, but Corrie wasn’t sure that was necessary. Betsie reminded Corrie that Paul wasn’t just referring to the pleasant circumstances, and a while later, they found out that the guards had continued to allow them to hold their worship services because they didn’t want to go into the flea-infested-barracks. The whole story is an awesome example of how much of a light we can be in hard times if we keep our focus on God. I will probably read that book again because it spoke to me so much. I found it to be such an inspiration of how much happiness Corrie and Betsie could find in a concentration camp, and how that should be an example to us of how we can find happiness in our current situations as well. And back to the topic of continual prayer, I loved hearing about how Corrie noticed that Betsie had begun to pray in place of her normal replies at times because life and prayer were becoming synonymous for Betsie. That’s amazing, but at the same time so challenging because that’s what we should be striving towards. I just keep wondering if we’re even striving for that at all. Intentional prayer is great, but what about intentional, continual prayer? What if there’s something greater that we’re still missing? That’s like having the ideal, perfect friend right beside each and every one of us constantly! Who wouldn’t want that? That constant companionship that won’t ever let you down and always knows what’s right and best for you. That perfect friend who won’t pull you in the wrong direction…or drag you in their pursuit after worldly things. What human friend do you have who always wants what’s best for you? If you intentionally talk to Him as if He’s there all the time, He will be…you just have to make time to listen to Him as well…no friendship is healthy if only one of the friends does all the talking. Are you so accustomed to talking with God all the time that you’d trust that He knows what He’s doing and that it’s what best for you even if He put you in a flea-infested-barracks? I think that’s where we need to be.