My Journey

July 1, 2018

Seriously, the stretches between these updates are getting longer and longer!! Anyway, I thought I’d try to fill in everyone who’s interested on what’s been going on with the passing out situation. 🙂 Today marks over 6 months and over 200 days of being episode free! That’s a miracle in my eyes, and one that I don’t ever want to forget. I find myself forgetting about the soreness, annoyance, discouragement, and aggravation of trying to talk with a bitten tongue when it’s been so long….which is good, in a way, but it also makes me think that it’s really not a big deal that I’ve gone so long without anything happening. Which–in all honesty, is a BIG FAT untruth. This healing that God has done is a miracle. These 6+ months are a miracle. Beginning to forget the way I felt after something happened is a miracle as well, but I don’t ever want to forget to thank God for the miraculous way He has healed me so far.

Talk has been happening about taking me off the seizure meds. Mostly, it’s just me because I’ve been feeling good, and want to be off meds if at all possible. The Dr. mentioned it first, and then the time we were going to start, mom and dad thought maybe I should wait until after I get back from Israel. (more on that trip coming later 🙂 ) It was a wise choice and the Dr. agreed, so on my last visit, (June 25th, I believe) I mentioned it again. My mistake was I also mentioned that I’ve had 2 times where it felt like the beginnings of something. (One was flashing lights and one was just the weird feeling). Because of that, he said we’ll wait until the next visit (3 months) and see how I do until then. I was kinda annoyed at that, but I didn’t get prescribed any more antibiotics, and he said things are looking really good! I came home and told mom and dad about what he said, and Dad said some words I never thought I’d hear him say… “If you’re doing so good on them, why don’t you just stay on them.” If you don’t know him that well, let me tell you that he does not say that…hardly ever…. 🙂  So, anyway, I will continue with my life and see how I do. Which lately, has been a little discouraging, with a little more brain fog, headaches, and weird feelings than I like. I have my suspicions of what I should be taking better care of, so I’ll have to start working on that.

As always, thanks so much for praying. You can keep on if you feel led to do so, and Praise God for the miracles He’s done already!!!

 

Dec. 24, 2017

Well, I’m back again. For a short while anyway. It seems like I’m neglecting this site more and more. Not just this update page, but the whole blog. I need ideas to write about now that I don’t have school stories to entertain you with. Back then, I had all sorts of funny things and deep thought provoking things that I could come up with. (3rd-5th graders do that, you know.) Either way, I’m getting off-subject and I will try to stay on topic from now on.

This past week was on of those HARD weeks. Back up a little to Dec. 1st….I had gone through the whole month of November, and no passing out episodes!! I was happy!! Then, WHAMMY, on Dec. 1st, I had another one. I was at work again, by myself, but thankfully, soon afterward, my brother’s fiance came out to get me to go do the decorating for the company supper. Needless to say, I didn’t go with her, but instead ended up being taken home, and while I was resting up (I was stubborn enough to decide I still wanted to go to the company Christmas supper), I had another one. So none in November, then two on December 1st. I’ll tell you quite honestly, that was really hard for me. It was a struggle emotionally, it was a struggle mentally, it was just a huge struggle for me. I can easily see how people who don’t know where to turn can quickly settle into a deep depression. Thankfully, within a week or so, I was back to my normal self, and while it still was hard on me to realize that we have not quite solved the problem, I was surviving, and I was OK. (Not near to the thriving point yet, but I was ‘ok’).

I had a follow-up with my neurologist maybe a week or 2 after. (this month just kinda runs together, to be quite honest.) We got a little bit more hope, and some more options that could be taken into consideration. He still didn’t believe it was epileptic seizures but made it clear that maybe beginning a round of seizure medication would be in order. He also gave us the option of following up with a cardiologist and going more aggressively after the heart to see if there is an issue with the heart. One option was a heart implant monitor thingie that every evening you connect somehow, send somehow, a report to the cardiologist to show what your heart rate did that day. The benefit to that being, that, if I have another episode, I can call in, and say that ‘so-and-so’ time, on ‘so-and-so’ day, I had an episode and they can check to see if my heart-rate dropped down to 38/bpm like it did on the tilt table test they did around a year ago. (To be honest, this sounded way more pleasing to me than the halter option I had heard of awhile ago)

At this point, I would’ve been ready to say, “Sure, let’s do that! Go for it! Let’s just figure this out and get it taken care of!” And yet, we wanted to see what the other Dr. would say, and knowing I had an appt. with him a week or so later, we decided to wait it out and give them a call back with the option we decided on.

Dr. #2 seemed surprised that I had never been on a seizure med, and he seemed all for it, with the exception being they wanted to draw some blood for blood tests, just to make sure they weren’t missing anything. (and also, because I had no clue what my blood type was) 🙂 I got a call within a day or so, and got the go-ahead to begin the seizure medication. I picked it up yesterday, and to be quite honest, I almost didn’t take it this morning. Just this past week, I started 2 new antibiotics while taking a break from my old ones, and there was something absolutely crazy going on in my body, but it could’ve been a combination of several different things, and not just the new meds. For 2 days, to put it quite mildly frank, I was not very pleasant to be around. I still have waves of dizziness that catch me by surprise, and weird things my body does that I immediately want to blame on my new pills.

So yeah, I almost didn’t take it this morning. I hate that I have to be on these pills. I hate what I feel like they are doing to my body. I hate that I have to portion/time my pills and drops with my meals. I hate to always have to be aware of how I feel and how I feel my body is reacting to it. I hate to read the side effects (they can really mess with your mind, making you think you’re going to get every one of them), and yet, I have most always been fairly sensitive to things, and I feel like I need to be aware of what to be on the look-out for. But, in the end, I tried to convince and reassure myself that they of course won’t do any good just sitting in those atrocious looking orange bottles, and because I have them, I should probably take them. It’s just slightly reassuring that these ‘side effects’ (if that’s what they really are) only last for a little while, until your body adjusts to it. It’s also reassuring that Dr. #2 doesn’t think I will need to be on these for life. This is a season I’m in, and for several months, I think I can handle taking them.

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So how am I doing now? If you ask me in person, I’m going to try to be honest without having to go into all the juicy details. I may tell you ‘ok’ and leave it at that. I may tell you, ‘I’m doing good.’ (because, honestly, I had a pretty good day that day) I am, by nature, a more private person, and you won’t get much out of me in a conversation. (unless you are really close to me or you ask the right questions) 🙂 The way to really find out, is to read here. For some reason, when I write, my life is more of an open book than ever before. The words I hold back in face-to-face conversations pour out, and spill across the keys in raw honesty that you won’t get by talking to me. I like to think I can hide my true feelings pretty well. 🙂 (I may have a false idea there, and I may be more ‘readable’ than I think, but hey, it doesn’t hurt to imagine!) 🙂 Anyway, as of now, it’s still a bit of a waiting game. We wait to see how this next month will go on the seizure meds. If they don’t work, we consider the heart monitor. We wait to see how the next 2 months go on continuing to clean the viruses and bacteria out of my body. We wait to see how my body truly reacts to the new things we’re trying out. (and if I happen to seem extra tired, exhausted, or anti-social, please accept my apologies. I can’t wait until I feel more like myself 100% of the time, and not just in-between the episodes) I can’t thank you enough for all your prayers, and for the concern/support I feel through all this. I ask you all to keep praying for me, as I go through this. It’s not easy. Not. At. All. There have been times when I’ve wished it was anyone but me going through this, and wondered why it had to be me. I still haven’t found an answer for that one! 🙂

Specific requests:

*Pray that most of all, if it’s in God’s plan, these episodes would stop.

*Pray that my body would not have any severe reactions to the new medicines.

*Pray that we could have wisdom to know how best to take care of me through this all.

*Pray that something we are trying would work.

*Pray for increased energy, and that I could *continue* to feel like myself again. Like I said previously, I still notice some dizzy spells, ‘brain fog’, and just moments where it seems like this could be the beginnings of another episode. (at times I wonder if I’m too cautious of what’s going on, and I imagine things that really aren’t happening. Very possible, just ask my family! 🙂  So, I guess also maybe pray for discernment over whether it’s a ‘real’ one or just something I’m making a mountain out of nothing) 🙂

*Pray for my spiritual walk with God. Through this time, it’s not always been easy to trust and continue with my daily devotions. Pray that I could remain faithful and trust Him. Pray that the peace that passeth understanding would be with me through whatever His will is. It would be very easy to blame God for bringing this into my life, and give up walking with Him. Yet, I know there is a plan for all of this…somehow, some way.

*Pray for my family and friends,  I cannot imagine the worry and ‘healthy concern’ they have for me. Allowing me to be free, to drive, to work mostly alone, mostly all the time…that takes a lot of trust and letting go. I think on that end, it affects them more than me.

*Pray for peace in my heart in all of this. Yes, one of my deepest desires is to be healed from all of this and never have to go through it again. Yet, my heart often wonders, what if it’s not God’s will? What if He has something else in mind for me?

This got so much longer than I expected. If you stuck with to the end, kudos to you! Thanks for your friendship and I hope God blesses you for faithfully serving Him.

 

August 16, 2017

Has it really been over 5 months since I’ve put an update on this thing!? Oh well, I have no good excuses, so I’ll just save the words. (I have a feeling this is going to get really long) They’ve still been happening, and I could give you a pretty good detailed description of all the stages I go through. The day it happens and for several days after, it seems I fall into a deep discouragement. Like the type, why does this have to happen to me? Why should I be the one to deal with this? When will it ever stop? Will I have to live with this all my life? Then about a week or so after, I convince myself that the last one was just a ‘freak’ accident. Like, I was overly stressed/tired, etc., and I convince myself (try to) that it was the last one, and that God’s got it under control. I feel invincible, and will do pretty much everything like normal. This continues on (with some other mixed feelings) until about a month is up (seems sometimes I can’t go a whole month without something happening), until I begin to wonder when the next ‘attack’ will be. I feel a big relief when I can get down to breakfast and out the door without something happening, because only once did they happen in the middle of the day, so if I make it that far, I feel ‘safe.’ I may have mentioned, (I don’t know), that these typically have been happening morning and evening. Praise the Lord, I have not had one at night since the end of Feb.!! (or was it the beginning of March?) Either way, God is good, I’m still here, trying to learn what He has for me through this time, while also still in the back of my mind wondering why it has to be me, and wondering what it would be like to have a ‘normal’ life again where I have no Dr. appt. and no fear or concern that this could literally happen anytime.

Today I had another Dr. appt. This was the one where they dig just a little deeper and try to find out just a little bit more of the unusual stuff. They found my body has heavy metals, along with a few other small things that bodies shouldn’t have. (I was by myself so pardon me but I can’t remember everything he said!) 🙂 The heavy metals, were a concern (most likely coming from well water, and also apparently our area of Ohio has been tested to have fairly toxic air). The plan and hope and educated advice that he gave is that when we get rid of these, that I will be back to normal. He said his goal is to get me so I don’t have to come see him anymore, and I’d be A-ok with that! 🙂 He said the low thyroid levels/activity (whatever you call it) could also right itself once those things leave. Another interesting thing was that typically, the way I understood it, when people have heavy metals, they are kinda throughout their whole body systems. Mine were basically with regions having to do with the heart. Hmmmm…. I asked several questions, and throughout the conversation, these things were mentioned….”It seems like it could be a fairly simple fix.” “You seem fairly healthy otherwise.” “You’re unique.” (yeah, we knew that 🙂 ) It gives me hope and yet at the same time, I’ve had this happen before. I’ve had educated opinions given to me. I’ve done different things, and had different things done to me and none have solved the problem. Doubt creeps in, along with the hope that maybe this *could be* the right answer, FINALLY. It’s almost like I don’t want to hope for fear that my hopes and dreams will be dashed again. It’s tough. It’s not easy. But like I said, God is good, and He comes through when we ask Him to. Thank-you all for your support and prayers already. I feel like there are so many of you who have checked in and so often I don’t know what to say or how to explain it. I don’t mind questions being asked, I just hate not knowing how to answer! 🙂 **Please keep praying for me as I go through the next couple months. It has been over a month now since the last passing out episode and my hope, dream, and prayer is that I could put all that behind me, and be healthy and whole again.

Oh, and this whole thing of buying purified water to drink seems extremely weird to me, but hey, if it helps, I’m pretty much willing to try anything! 🙂

March 5, 2017

It happened again, out of the blue, one day at work. They had no clue that this sometimes does happen to me, so it scared them pretty bad. They took me to the ER again…(wonder if you can get frequent flier miles 🙂 ), and they didn’t do a whole lot to me other than instruct me not to drive and to follow up with my neurologist, also prescribing an anti-seizure med. We left for a wedding that weekend, and I came back home and it happened again one evening while I fell asleep. This was quite depressing, as I had been doing so good with not having them, and then bang! 2 times in several days. I got in contact with my neuro office, and he told me he does not want me taking those meds prescribed, and an appt. was set up for Friday morning.

That week was just slightly miserable. Not knowing what to do, or what was going on, not being able to drive, depending on everyone to take you everywhere, did not make me a happy camper. Friday finally came, and basically, in short, the Dr. still said he believes it’s my heart rate that’s not regulated well enough (where I move too fast for my brain/heart to keep up, making my heart rate speed up, and the blood pressure drop, causing a so-called short to pass from my brain to my heart to my body, causing me to pass out, causing me to go into seizure activity) at least in the simplest way that I could understand and explain it. He also said he would recommend getting on a low dose of a beta-blocker to try to regulate my heart rate to a more consistent rate. He also cleared me for driving again, with a warning that if I feel it coming, that I need to pull over and get help. (This made me quite happy and I felt like I had some freedom back 🙂 ) He also said that he didn’t really know what other tests he would even try, and doesn’t want to put us through a bunch of rigga-ma-roll tests that won’t prove anything anyway.

So, yeah, life has been crazy this past week or so, and I’d appreciate your prayers as we continue to try to work with this all. It was very disappointing to me…I thought we had the problem figured out, but I guess something or other caused that to trigger again last week. I do know this…God is still faithful, God still cares, and He can still perform healing miracles!! Thank you for all your prayers, and please don’t stop!! 🙂

Jan. 10, 2017

Sooo, I haven’t been keeping this very up-to-date, I know. But, there really was not much news to explain. Today, I had the 6 month check-up with the neurologist. I highly recommend, if you ever need a good neurologist, go see Dr. Monome at Ohio Health. Friendly, Christian, family-man, answers questions in everyday language, cheerful, optimistic, I could go on, but seriously, I have been so blessed to have a Dr. like that!

Today, was just a consultation to see how I’ve been doing, etc. etc. etc. I suppose I’m an interesting case, as the the NP came in and said, “Dr. Monome always sends me in on the interesting ones.” 🙂 I told him it’s been since November that I have had an episode, while before it was once a month. He was pleased with the progress, and said, we will leave the Beta-blocker prescribed to me, just pretend it never happened. 🙂 He also prescribed a migraine pain-killer, as those have been more frequent, and I’ll be taking those as needed.

He said he’s glad for the good news, left the door open, and said if we ever need something down the road, where weird things start happening again, that I should just give him a call. Super happy with that. As far as driving, since I was never ‘officially’ diagnosed with seizure/epilepsy, they said, I should be ok to drive. (whew!) Beings that the EEG showed that my brain was completely normal, and I have been feeling better with the thyroid treatment I’m receiving, he was pretty willing to keep doing what we’re doing, and go from there!

Thank-you all for praying!! I am positive none of this would be happening without your constant prayers! Continue praying for complete healing, and also continued peace, trust, and rest through this all. It’s not easy, especially when you don’t have a specific treatment pinpointed that will *cure-all*. So anyway, prayers are amazing! Prayers work miracles, and I’m living proof of that! Thank-you!!! 🙂

Dec. 14, 2016

I’ve kinda been neglecting this page because I don’t have any news to put on it. I’ve been doing good..I have good days, and bad, but…who doesn’t?? We’re kind of at a crossroad as to what to do next. My scheduled appointment with the neurologist (just a routine 6 month check-up), is in Jan. I’ve considered cancelling it, since they’ve ruled out the nerves/brain as causing the issues. But then, there are questions I have, and it would be nice to get a Dr.’s perspective on it.

Through the month of Nov. and Dec., my body has been kinda stressing out. With the holidays upon us, I’m not near as careful of what I’m eating. Plus, tax season for the business, and losing my Grandma suddenly, viewings, funerals, emotional overload, trying to find a job that is suitable to me, it’s been a crazy couple of weeks. So far, though, the stress hasn’t been seeming to bother me too much. (One idea was that stress may be causing it) So, yeah, we still don’t have many more news or information. Keep praying for a miracle of healing for my heart (racing, skipping, low blood pressure, etc.). God is a miracle God, and I’m still amazed at the peace I’m feeling through all of it!! I’m positive it’s the many prayers that are being prayed! Thank-you, all!

Nov. 9, 2016

So, because it’s been several weeks, I feel like I should update this at least a little. I did go through the whole month of Oct. without a seizure. PTL!! This was the longest I had gone since July, so I was pretty tickled. 🙂 Then randomly, on a Sat. night, it happened again. 😦 This did kinda get me down because I was finally having hope that something we were doing might be working. I did notice a quicker ‘bounce-back’ recovery (able to do things the next day, that normally I wouldn’t have felt up to) and I did not get as sore right away (possibly a result of it not being quite so hard.)

Since then, I have gotten a call from my Dr.’s office, had a check-up by the nutritionist, had blood work done to check thyroid levels, and have gotten some other clues as to what might be going on in my body. A friend of ours told us that some of my symptoms sound like what she had when they had mold in their house. Dad immediately began doing research on it, and he got convinced quite quickly! Me, on the other hand, not so much! Until I began thinking it through a little, and doing a little research of my own. Most of these symptoms have ALWAYS happened in my bedroom, (seizures, passing out, the severest of my brain fog, etc.). My room is beside an unfinished attic that gets very hot and humid during the summer, perfect for growing mold spores. Also, I sleep with a window A.C. during summer (to keep it cool) and a humidifier during winter (for dry skin)–also ideal for those delightful spores. My one window is right by a roof that is so moist it is mossy because the sun can’t reach it through all the trees. Still no one had ever heard of it causing seizures..until I read this article.

Things kinda began making some sense to us, and so we’re not sure if taking the medication (that is ready for pickup now), is truly the best thing. One of the side effects of the beta blocker is mood swings. (ummm, I’m moody enough, don’t need no drugs helping me out on that! 😀 ) Also, thyroid results came back under-active and apparently the thyroid controls alot of things in your body, some of which is heartrate and pulse…Hmmm, underactive thyroid, too rapid heartbeat, cause fainting, cause seizures..Maybe this could be something. (these are all things we’re been told by Dr.’s, I’m just taking their word for it!) So yeah, we’re kinda at a crossroads right now, not sure which way to go. Prayers for wisdom would be appreciated! If we can, we’d like to treat the underlying cause, not just the symptoms, which is kinda why we are holding off on the meds now. I personally feel that what is causing these symptoms is not just one singular thing, but rather a combination of things that are working against my body, causing it to do weird things. (One Dr. said he wouldn’t think the thyroid would cause the symptoms I’m having….My thinking is there’s always a first time for everything, and knowing my track record, I’d be the one to make history with it!)

Oct. 27,2016

I decided to update my health updates through this now. That way, you choose to read it, and I’m not posting it in an ‘in your face’ kind of way. I’m not planning to announce every time I update so just, if you’re curious and haven’t heard anything for awhile, this would be a good place to check. As most of you probably have heard by now, the last news I had was the tilt table test/EEG. This test was the beginning of Oct. sometime, the dates are kinda running together. I was told the reports would be sent over to my neurologist and he would get in contact with me. I waited, and waited, and waited. I was encouraged by some people to keep after the Dr.’s office, and push them, but being that I HATE calling people (Dr. offices, specifically) I kept putting it off. I had determined that tomorrow, after I got off work early, I would call. But then, at work, I got a call. Miraculously, I heard it ring, (I almost never do at work!), saw it was a 614 number, and we weren’t busy at the time. Basically, she told me things I kinda already knew….I passed out, (yeah) I had no seizure activity (amen, please go on), the Dr. had read the EEG and the brain activity was normal (PTL, I finally have proof of that! 😉 ). He also had talked to the cardiologist on staff at the time of my test, and he said he would think it has more to do with my heart racing too fast that is causing me to pass out, rather than brain activity. He recommended before using anti-seizure meds, to try a Beta-blocker, which I guess is just to slow my heart down?? She asked me if that’s something I want to do, and I told her, that sure, I’ll try it, cause I just want this to stop! 🙂 She said that the neurologist will have to probably get with the cardiologist to get me an appt. with him….because we don’t think it has anything to do with the brain, the prescription will probably have to come from a heart specialist, not a brain specialist. Sooooo, we wait some more! This month has been great! I have 4 more days, and I’ll have made it a complete month without an episode. I’ve started to, at night, if I feel my heart seems to be racing, I’ll try to wake up completely, and slowly get up, walk around a bit, and just try to calm down a little. I’ve also been watching what I’m eating right before bed, knowing that some certain foods, or additives in foods, can cause your body to do funny things. The words ‘miracle’, ‘faith’, and just tiny phrases I’ve heard all my life keep coming back to me, as I keep thinking of all God has brought me through already, and what he’s taught me in all of this. (blog post for later, maybe 😉 )

Prayer request for you prayer warriors, and I know you are…I can feel them!! The peace I’ve felt through all of this is tremendous! I’m someone who can normally be read like a book. Most people can tell what my feelings are on something, even when I don’t say a word. I get stressed out very easily, and am a very impatient person. Soooo, you could say that this has been teaching me great lessons. Anyway, I’ve been hoping and praying for a miracle. Right now, a miracle would be making it through the whole month of Oct. without an episode (and then the rest of my life!) Pray for a miracle of healing on my body/heart, and for peaceful nights of sleep. Since, lately, they’ve been happening at night, that’s where my thoughts are often drawn to, when trying to sleep. Also, pray for patience as we wait for that appt. (or for speediness on the Dr.’s side 🙂 ) Thank-you all!! Your prayers are working wonders…YOU HAVE NO IDEA!! (Wow, this turned out to be wayyyy longer than I planned!)

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