Numb

I figured its been 2 months since I wrote, so I should update. Where to start? Since John's seizures have been more "controlled", he has started having hour long repetitive seizures about once a week. So now, instead of having 5 or more seizures a day he usually has about one a day, usually in the morning when he wakes up. Nice way to wake up right? And then one of the repetitive seizures a week.. But who knows, it could all change its pattern in a week or two.

I don't really know what to think at this point. I feel like no one can help us, and the specialist who might be able to help us, is so hard to get into... I have pretty much gotten all his doctors to call and harass them, so we should be getting a call this week, about how soon he can see the Epileptologist . He has an appointment in March, but there is no way we are going to wait that long. We will see a neurologist tomorrow, but I am not getting my hopes up.

John has been on 2 anti seizure meds and he has maxed out the doses, and is now on a third medication. Normally, if the first 2 meds fail, a third won't make a difference. So then what? I am not really sure what the doctors will do now. John and I both don't love the idea of more medications.. But, most doctors will look into figuring out if he will be a candidate for brain surgery. At this point, we would pretty much do anything for the seizures to just go away. But, I am not sure how close we are to surgery being the next option.

Some days I can't believe this is our life. I always thought I would get married, have children, and we would live happily ever after. I mean why wouldn't that happen, everyone else seems to be living the life I thought I would have. Sure, I don't know every one's problems, and I know people have way harder trials than this, I just can't help but notice those who don't. I am sorry but money problems, messy houses, being up all night with a child is NOT a big problem. What I would give if those were my ONLY problems. I never thought that my 28 year old husband would have such major health problems. I mean this isn't even the only health problem he has. He also has keratoconus, which pretty much means he is going blind in one of his eyes (there is a surgery that can fix this), along with asthma, and prehypertension. I mean seriously, when is he going to catch a break?

Lately, I have really been struggling to not compare my life to others, I am obviously doing a horrible job. I just feel really alone in this, John and I are going through this together, but its affecting both of us differently... This has changed the both of us so much. It kills me to see the bright, smiley happy guy I married slowly become this person, I barely even recognize.

Some people have asked me if his medications have made him quiet or seem different. My answer to that is HELLO he is Depressed... He is grieving the person he was, and All of his independence has been stolen from him. Everything he loved to do has been taken away. He lives in fear of having seizures constantly. We have been living in hell for the last year and a half and its starting to wear on us.

I had a break down the other week at my parents. Everyone just kept asking what can we do to help...? I just told them there's nothing you can do. Because they can't take this away. I think that's what I have been most frustrated with. No one seems to know what to do for him. I have tried to "fix" him myself, with diet, exercise, doterra oils, going to bed early, and doing anything and everything I can do for him. I have prayed 1000's of prayers, gone to the temple, fasted, and now I am just fresh out of ideas.. I just feel Numb...

Big news!

Big news! John hasn't had a seizure for almost a week.. We met with his neurologist last week and he bumped up his medicine and it seems to be doing the trick... He can listen to music without a seizure! I know our prayers have been heard and I hope the medicine continues to work because I could use to this life! ha.. Seriously though, I know it isn't by chance this is happening right now.. John has 4 weeks left of school and 6 weeks until his clinicals. Some may say its a coincidence but I know its just a tender mercy from the Lord. Life has just been crazy the last year and half and it would be so nice to be able to relax and have some normalcy. I have enjoyed watching John play his guitar. I haven't seen him play for probably a year.

Life would be so easy

The other day John and I were talking about what our life would be like if he never had another seizure from here on out.... His response was, "Life would be so easy". I don't think anyone would even understand the amount of relief and stress that would be taken off our shoulders. It makes me want to cry sometimes thinking about how enjoyable life would be without these damn things. Sometimes I think about what most "normal" people get to do and worry about at this time of their lives and wish that was us. We should just be worrying about school, getting a job after schools over, when to have another baby, and saving our money. Not, what if his seizures get worse, what if he can't do his rotations in November,then what? What if he has a seizure during a rotation, what if the medicine never takes them completely away and he has to have brain surgery, etc.... Most days its hard for me to not think about his seizures. If he has a good day, we get excited but then we are both anxious about when the next seizure is going to come. I wish John had a "normal" case of Epilepsy, According to his current doctor he's never had a patient like John, comforting huh!

We are moving back to Utah in 6 week but who is counting? Honestly, everyday here I have been in a constant battle with myself to be happy . That might sound dramatic but its the truth. Since we moved here it's just been one thing after another. John's first week of school our apartment flooded and he was in a car accident, a couple months later someone broke into our car, few months later John was in another car accident( don't worry he doesn't drive anymore, stupid seizures), this July John was in a bike accident because he had a seizure and he was so lucky he didn't die or have any major injuries, And now, I was told I might have something wrong with me because my bilirubin has been elevated. So I have to follow up with a GI doctor and can't get in until Sept 19... But I am happy to say we have seen a decrease in John's seizures, thank goodness. I am hoping it will just be a matter of getting the right dose of medicine and the seizures will be gone for good.

Even though its been a hard year, I know we have been watched over, and certain people and experiences have been placed in our lives at times we have needed them the most. My faith has grown a lot and I know now more than I ever have that we have a Heavenly Father that loves us and wants the best for us. This trial is just one of those experiences that is molding us to be what he wants us to be.

In other news we already have a place to live in Utah , and its funny because we will be living right next door to my sister and John's brother. Yes, my sister married his brother for those of you who read this blog and didn't know. We will be saving so much money living in this apartment, it will be a lot smaller than we are use to, but saving an extra 500 a month will be nice. Especially, when you are living off of student loans. I just can't wait to be away from 100 plus degree weather. Never did I think I would be so in love with Utah, but I hope I never have to leave again. I love it there and can't wait to live close to all my family and friends again.

I hope people who read this blog don't think I am the most negative person ever, because I am not. I love my husband so much and it kills me to see him have to go through all this. I am going to try to post more often so its not these sad, depressing posts!

Today

7- Woke John up bc his alarm didn't go off ( I always set mine just incase)and then I went back to bed

9- Sophie is up and we cuddle in bed and watch Sponge Bob.

10- get ready for the Library

11- Meet up with friends and go to Music and Movement at the Library. ( She loved being there)

12:20- Drop Johns lunch off at school

12:30 I lay Sophie in her crib for her nap

1- check my blogs,pinterest, and facebook

2:23- Eating animal crackers and thinking how good I have it! I love being a stay at home Mom!

How cute is she in this pic.. It has nothing to do with today but I just miss her being so tiny!

Wedding

John's brother, Christian was married last Tuesday in the Timpanogos Temple. Here are some pics of the Wedding day.

Happy Birthday to my Sophie Girl!

I can't believe just a little over a year ago we were blessed with our healthy, perfect baby girl. I am so grateful for Sophie and all the happiness she brings to our lives. She is such a good girl and was seriously such an easy baby.

Some words she says :Mama, dada, caca (for gross stuff), nine (which is no in German), Jak ( her grandparents dog), off, up,tickle tickle, nana, kitty kitty,doggie, bah bah, hi, yeah,uh oh and she will sometimes mimic words we ask her to say. She understands a lot of what I say which is so

fun. She is just getting bigger and bigger everyday. She's not walking yet, but is very close.

We celebrated her birthday July 2nd and it turned out perfect,with the help of my sister Brooke and mom. We had a bbq with our families and I made a giant cupcake for Sophie. We also had Sweet Tooth Fairy cupcakes for everyone who came. Sophie was in heaven with all the attention. She is one very loved and spoiled little girl. Love you Sophie

I will warn you this isn’t a happy post.

This week has been ROUGH! I have a sinus infection, which means I have no energy and constant pain, John had finals this week so I have been a single mom the last two weeks. Oh and I can’t seem to snap out of this angry, depressed mood I have been in for quit some time.

Why am I depressed and angry? I literally see my husband have multiple seizures every single day! I don’t even remember a day that he hasn’t had a seizure.Can I just say I hate Epilepsy, I hate that there isn’t a cure for it, I hate that my husband has seizures, I hate all the uncertainty in my life right now, I hate the depression and anxiety it causes me on a daily basis, I hate that I have no Idea how this is going to affect us in the future, I hate that this could kill him, I hate how much stress this has caused our relationship, I hate that no one in my life understands , I hate that I can’t ask my husband to run to the store because I forgot something ( he can’t drive bc of the seizures), I hate that I couldn’t fully enjoy my newborn baby who I prayed and begged for so long because I was soooooo worried and stressed out of my mind because I didn’t know what was going on with my husband, I hate that my husband can’t listen and enjoy music like he use to (music causes John to have seizures), I hate when people tell me it could be worse because this is pretty bad and his condition could get worse, I hate that his medicine isn’t working, Ugh the sad thing is I could go on but I will stop.

Sorry this is so negative but this is how I feel and I am working on trying to get use to this new life. Some weeks are better than others, this week I am just frustrated that John has been on medicine since March and nothing has changed. Luckily, his doctor has changed up his medicine so we are hoping,praying that we will see some decrease in seizures soon. We had an appointment this week and have to keep track on how many seizures he has a day. The doctor is amazed that John has 5 seizures a day and is actually able to function. I don’t really know how I should feel about his comment.

John has been pretty amazing with everything. You would think I am the one who has Epilepsy by the way I am talking. I think its just hard for me because I am the one who has to see it and while he's having a seizure he's not aware of it happening.But He is doing amazing in school . I am so grateful that he hasn’t let this hold him back from accomplishing his goals.John has clinicals coming up in November so we are just praying that he will be seizure free by then.

Some days I can’t believe everything we have had to go through since we have been married ( Miscarriage, 2 and a half years of infertility,and Epilepsy). I am very aware that things truly could be worse. We are blessed with the sweetest little girl you could ever ask for among other things. I don’t know what I would do without Sophie….Heavenly father knew what he was doing when he sent her at the time he did. I am more aware everyday of how I am so NOT in control of a lot of things in my life. I never would of guessed we would be going through this when we first were married. I love this quote "The trick is to enjoy life. Don't wish away your days, waiting for better ones ahead." Marjorie Hinckley. I find myself wishing the days away and I need to STOP. I have a lot to work on but hopefully I will learn what I need to from this experience..

Trials...

John was diagnosed with Temporal Lobe Complex Partial Seizures this Thursday. They are a form of epilepsy. It was like a HUGE weight had been lifted when the doctor confirmed it. I on the other hand already knew this, I have seriously researched everything on seizures and epilepsy and knew exactly what kind he had. It really probably sounds weird that we are happy about this news but John has been through a lot with this and it has been really hard on me as well. I will start from the beginning and let me tell you it has been going on for a freaking long time!

So when John and I got married we got pregnant after only being married for 4 months. Well that put a lot of stress and pressure on John. He was only half way done with his bachelors degree and we really weren’t ready for a baby. We then miscarried taking a lot of pressure off John but he started to notice he was having these times where he wouldn’t be able to talk for just a few seconds and he would just stare off. He just thought he had a lot on his mind being married, thinking he was going to have a baby, plus working, and school. So eventually those staring spells just went away and life had calmed down.

Probably a year and a half or more went by and John started working in the ER full-time, was in his last semester at UVU and was serving as the Pre-PA Club president at UVU. Oh and he was applying to PA schools. He would go to school at 8 in the morning, get done with school sometime around 12pm or later, then go to work at 5pm and work until 5am the next day. He was busy and his body wasn't getting the rest it needed. Well those staring spells came back and again he thought it was just stress and anxiety. He had been to the doctor about these staring spells because I forced him to go. The doctor gave him some anxiety medicine but that didn't fix the problem. Once school was over he was able to start working normal hours at the ER and those staring spells went away.

6 months or so went by and life was good. He had been accepted to multiple PA programs and we found out we were having a baby. The day after we found out John didn't get much sleep bc he had an early shift at the hospital and I noticed he had a staring episode. I was super frustrated and was almost mad that they were back again. He just tried to shrug them off.

Well after probably 6 more months went by those staring spells got worse and began looking a lot different. I was really concerned and forced him to go to the doctor. I thought they might be seizures. I had seen a show on epilepsy and it sounded a lot like what John had. I went with him to the doctor appointment, I think I was about 8 months pregnant and really wanted this figured out. He was scheduled for an EEG, this is when they hook a bunch of electrodes to your head and can see the electrical activity of the brain. It took awhile to get the results. We had already had our baby and moved to Vegas by the time we got the results. The EEG showed some spikes and sharps in a certain area of the brain, meaning he could be having seizures but the test was inconclusive and needed further studies to be diagnostic of seizures. When I asked John the results of his tests he said everything was FINE!!! No it wasn’t fine. I knew something was wrong and he was in some serious denial.

The seizures were starting to happen more often. We finally got on medicaid because I stay at home with Sophie and he is a full-time student and his program prohibits him from working. He finally went to the Neurologist. While meeting the doctor he actually had a seizure in front of him. The doctor thought they could be seizures and wanted to order more tests. For some reason our Medicaid changed and we had to start all over again by going to a primary care provider and get their referral to go to another neurologist because the one we had seen didn't accept the new Medicaid. I was feeling pretty defeated and thought this was never going to end. It felt like we weren't ever going to find out.

After a long road, a lot of fasting and praying we found out on Thursday exactly what is going on. The hardest part of this for me other than having to see John struggle was not being able to open up to anyone about this. He really wanted to keep this private. No one, not even our family knew this was going on until about 9 months ago.

John's seizures aren't probably what you think of when you think of someone having a seizure. He doesn’t fall to the ground and start shaking. His seizures only last for about 20 seconds. He can’t speak, his legs and sometimes his hands move like normal body movements but he doesn’t have control of them and he turns really red in the face like he’s holding his breath. He isn’t even aware sometimes that he had one. After he has a seizure he can go back to whatever he was doing. Sometimes he will slur his words right after they happen too.

I am sure you can only imagine how hard this has been on him; being in PA school is hard enough but having to deal/ hide this has been awful. He has seriously done so well in school and has never had trouble with grades or anything. If you have any question feel free to ask. Keep him in your prayers and pray that this new medication that he is on will keep him seizure free!

VEGAS and our BABY!

NOTE: This was written on March 5 my husband forgot to post it for me. I know you all have been dying to see what I have written. Sophie is 8 months today which also mean we have lived here in Vegas for 8 months! It has gone by sooo fast, thank goodness. It hasn't been too bad but I really miss Utah and being close to family and friends... The weather here is amazing right now and I cant wait to take Sophie swimming once it gets warm enough.

John has 2 more sessions left of his didactic phase of school, which is just the class portion of PA school. He has done amazing in school and has great grades. He really likes school and is very happy with his chosen profession. He will do the clinical portion of school in Utah, so we have about 7 more months left here in Vegas.

Sophie is growing like a little weed. She sits up on her our, eats pretty much everything (loves banana's), says " Mama", which of course I love! She hates getting in the crawl position, but is very mobile and loves to stand up . She has two of the cutest bottom teeth ever. She is a really good baby and gets more fun everyday. I can't believe just eight months ago she joined our family.

Anyways I know all anyone ever likes to see is pictures of Sophie girl so here ya go and Happy 8 month birthday little girl!

I miss this tiny girl

Dress-up with Sophie

Playing dress-up with Sophie…. New blog post coming soon.