My Testimony - Part 3

To read from the beginning -- Part 1 is here, and Part 2 is here.

Today also happens to be World MoyaMoya Day - I am happy to be able to shed some light on this rare disease on behalf of my family and my cousin's daughter as well.

In January of 2013, I had a health scare. I had a TIA (mini stroke), I was slurring my words and unable to answer John’s questions, so I spent about 5 days in the hospital having all sorts of tests. I was released from the hospital and followed up with a neurologist in Memphis, but the doctors couldn’t tell me much other than I had evidence of several mini strokes and small veins in my brain. They told me then that as long as my blood pressure stayed in control, everything should be fine. As you can expect, Memphis doesn’t have the world class medical providers that we were used to, but God protected me. 

In October of 2013, we moved back to Houston… and during that move, I had another TIA. In my Dad’s driveway – I was totally disoriented and slurring my words. I took some aspirin and continued on with the move. I didn’t take it seriously; like I should have, but thankfully God was in control. After the first of the year, I started a wellness group and we challenged each other to drink nothing but water. Initially, I thought I was detoxing from caffeine… but it kept on going and I had a migraine every single day of January 2014. I went in to see my doctor, and then a neurologist. 

The neurologist diagnosed me with MoyaMoya Disease in March, and the only treatment (there is no cure) is brain surgery. Thankfully we were back in Houston, and the Chief of Neurosurgery at Houston Methodist has lots of experience with MoyaMoya. It’s basically that my blood vessels are too small and it causes pressure to build up in my brain – so they needed to bypass those vessels in order for newer larger vessels to grow. I needed a bypass on both sides. 

in the ICU after surgery

 day after surgery

So I had my first brain surgery on May 1, 2014. I recovered for 8 weeks from that one, and then had the second on July 8, 2014. I’ve been extremely lucky, because this is usually diagnosed in children. My cousin’s daughter is 12 and had surgery for the same thing a year and a half before I did. God kept me from having a major stroke, and I’m forever grateful for my relationship with Him because I’m not sure how I could have gotten through all that we have without Him. 

second surgery scar

 

shaving my head

We still struggle with getting over all of the issues that came along with being out of sorts for basically the entirety of last summer. Tyler still has issues with being left without one of us, as a lot of you have seen with his fear of being in Sunday School without John. He still thinks every time someone comes to see them that I’m going to leave and go to the hospital. I know that in time things will settle down, and we’ll find out this summer how things are going when I go back for a day surgery procedure where they will test my blood vessel growth. 

God has been with me for my whole life, and even though it took me a while to come around to Him… I know that he knew what he was doing. He got me through all that we’ve walked through up to now, and I know that he will be there with us for all that will come in the future as well. I pray that my story has blessed ya’ll in some way.

If you'd like to read more about my MoyaMoya Journey, click this link to all of my stories regarding my experience. 

Starting Something New

Well, 1 year ago... my life looked drastically different. In March of 2014, I found out I had a disease called MoyaMoya - which is a disease where the blood vessels in the brain are small, and some are blocked... leading to all sorts of problems. For me, it manifested in severe headaches, problems with controlling my limbs, and some mild mini strokes.

I was very lucky that I didn't have larger problems, but on May 1, 2014 - I had my first of two brain surgeries. I wasn't as clear of a case because my vessels were so small that I wasn't able to have the first plan of action - a direct bypass of two vessels - I ended up having to go with an indirect bypass which is effective as well, but takes up to a year for new healthy vessels to grow.

I remember being in the preop area the morning of my surgery and being a terrified mess. I didn't know what I had gotten myself into, but I knew that the first 6 hours after surgery were the most critical. That's when the patient has the most potential to have a major stroke if the body isn't properly hydrated. I was admitted 16 hours before the surgery to get IV fluids, but didn't get them until late in the evening -- so I was terrified I hadn't gotten enough.

I was silently crying in the preop area out of fear, and I remember the wonderful nurse singing worship songs to me to help me remember who was truly in control. It helped some, but due to our crazy circumstances - I was only able to see my mom before surgery -- and I truly believed that I might not every see any of my family again... or potentially be under the fog of a stroke. Sort of like an episode of ER that I remember clearly where a lady had a stroke, and the whole episode was her narrating from inside her head... but no one else could understand her.

In reality, I woke up just fine and the only troublesome issue was that they didn't have any beds in the Neuro ICU so I had to wait several hours before I was moved over there. I was uncomfortable because I had so many wires... a central line, and another major artery tapped to receive medicine along with a catheter, heart monitor, and many bandages. I was a mess but I was in and out of consciousness most of the afternoon... I really only remember John and my Mom visiting and feeding me from my tray of liquids... boullion, frozen ice, and jello was about it other than an iced tea.

This was what I looked like that afternoon, but I was moved to a regular room within 24 hours or so - likely a bit shorter. Then I was on my way home the next day - if you can believe that!

That's what I went home with... which is what my kids call my "biggest Bobo." I suppose it could have been much worse, but I certainly looked scary for a good while.

Looking back on that day, I have so much to be grateful for.... and the blessing of moving forward. I haven't had to change much about my life since then -- at least not things I didn't want to change. I hope to get my body even healthier as the days and years continue, but I still get the blessing of being home and able to teach my children... we start Kindergarten this fall and goodness... it's hard to believe that my boys are that old already. 

Sister, Look at Me Now

After both surgeries were completed, and the scars were mainly just in the healing phase... it was time to shave my head. With no hair, and wearing a hat everyday... I felt like it was time to step up my makeup game. Coincidentally, at about the same time my sister, Cathi, joined Younique. I've always had REALLY sensitive eyes, so I was skeptical about buying any of her products. In fact, I was bummed at first because I just didn't think I'd be able to support her new endeavor, but she brought her kit over and let me try the fiber lashes... and I LOVE them. I've lived a life with no lashes for most of my years on Earth, but no more!

 

Moodstruck 3D Fiber Lash comes with a transplanting gel and the fibers in this cool case. I've heard amazing things about them, and they are all natural! They easily wipe off, and while you might think that they are false... they are fibers that you put on after the transplanting gel and then cover with another layer of gel to seal them. 

This is a picture of my niece after she applied them for the first time... she is gorgeous inside and out... but her lashes are AMAZING!

As you can see - it's $29 for up to a 12 week supply, and I've heard from someone that has been using it for 2.5 months that hers hasn't gotten dry. It sounds too good to be true, but it isn't... I am in LOVE with these lashes! 

In addition to the lashes, they have a full line of other products including lip gloss. All natural again, and I love that you can click right on the products and read in plain English the ingredients! They not only tell you the ingredients, but also what they are good for! I've got the clear "Loyal" lip gloss - it has a slight shimmer, but it's subtle. I'm thinking I might get Luxe or Lovesick next.

We had some time for me to play around with the eye pigments this past weekend, and I loved them. I tried on three different "looks" and found one that I really liked, so I hope to order the colors to blend soon. The photos make the colors look a little bit darker than they are, but they have shimmer colors on the left and matte on the right. Don't you just love the names?

As I said before, it's a full line of gluten-free, all natural mineral makeup. I'm hosting a party for my sister right now, and I'd love for you to make a purchase from my Lash Bash. They also have some cleansers and other things.. and their makeup brushes are FABULOUS!

This fall they are coming out with all sorts of new products, and are bringing all of their existing products back to be manufactured in the USA -- with the only exception of the fiber lash mascara... it will continue to be made in China for now. Check out all of the new items coming out over the next couple of months!

 

Would you please take a look and shop my party? I need some help getting all of the items I want off of my wish list!

Life Renewed

I've kept most of this off this main blog so far, but now I'm ready to put my fingers to writing again. I love writing, and I've so missed it.

In March, I was dealt a curve ball in being diagnosed with MoyaMoya disease. The name of the disease is Japanese, and means "puff of smoke". It is a problem with the blood flow in your brain where if untreated you could have a stroke. I was really showing signs of this disease when I had the TIA in January 2013, but no one connected it until March 2014.

I've successfully survived two brain surgeries since then, and I'm starting to pick up the pieces. My first surgery was on May 1st, and before I had the second surgery -- I was feeling amazingly good. Much better than I can remember feeling in a very long time. The second surgery was on July 8th, so I'm working toward being back to where things were a couple of weeks ago or even better.

I feel like since we moved to Memphis in June 2011, I've been in one long tailspin of something eerily like depression. Possibly even longer. It has been a rough road to a spot where I never thought I'd get to... I mean I think I felt better in between my surgeries than I did since high school. My energy level was impressive to me, and I couldn't be more grateful for my doctor.

There is so much life in me -- and I'm going to need it. I've put a lot on my plate with homeschooling, but I feel like it's important for our family. I've got two little boys that have very different needs, but both are remarkably deserving of everything I can give them. I've got an ADHD wild man that needs some extra love and attention, and at the same time a 3.5 year old who is basically already a reader.

I hope that this is just the start of me being able to restart my life on many levels. So many things have been on hold for a longtime, and now it's time for me to shine. I've got businesses that need to get started, books that need to be finished writing, school to plan, classrooms to set up, and so much more. I hope that while the dust settles around us, you will come along with us for the ride of our lives.

It's also time for us to find a new church home for our family. We have been coasting along since we moved, and we are ready for these boys to make some friends. I am excited about getting out there an into a church home again -- a lot of our beloved friends have found new places to worship since we left Cypress in 2011... and it's time for us to figure out where we fit. I am still not a fan of the mega-church concept for us, so we will be looking small first and go from there.

MoyaMoya - Finally a Name

You know that moment when you finally have a name for what you've been feeling that confirms you aren't crazy... but at the same time it's scary as hell because it's truly a serious condition? Well, I hope you don't ever know that feeling -- but it is both comforting and frightening at the same time.

I recently experienced this - less than a month ago, I was sitting at home and received a phone call that would change the course of life for sometime to come. I wasn't brought in to the office to receive such news... but my former doctor's nurse called me to tell me that I was diagnosed with MoyaMoya Disease.

It is rare, but explains so much about what has been going on with me since January 2013. While I have had it longer than that, it's when things started to change. I had my TIA in January 2013, and was released from the hospital not thinking that there was much to follow up on. I was told that if I kept my blood pressure in range there was nothing to lead them to believe anything would be a problem in the future. In truth, that was completely wrong -- my blood pressure was only a minor detail in the process. 

I had no idea that a water challenge among friends would lead us down this path, but I'm glad it did. On December 30, 2013... I started a water challenge with a group of fabulous ladies and dropped all caffeine from my diet. It lead to 26 out of 31 days in January 2014 having debilitating headaches. I went to see a neurologist (a whole story for another post) -- but she decided to do a repeat MRI to see how things were looking in my brain. A week later, I learned it was abnormal and further testing was needed. Another week later, I learned of the MoyaMoya diagnosis.

I had heard of MoyaMoya before because my cousin's daughter had been treated for it roughly a year ago, and is doing great... but I knew it was serious. I knew she had brain surgery for the condition, but that things now are going well for her. What I wasn't sure about was the difference between having it as a child vs being an adult. I also wasn't aware that you could have it on both sides and require two brain surgeries.

I know that now, because that is what I'm facing at the moment. I've heard how bad it is from Stanford, and have met with a surgeon here in Houston as well. Going to Stanford would mean being in California for a month, and away from my kids/family/friends/comfort zone for the entire surgery process. Having the surgery here would spread it out a little more and we think make it logistically a bit easier to deal with.

None of the decisions we are making are anything we thought we'd be dealing with, but we are facing it while navigating what we think and pray will be best for our family. We are writing our wills, because we've needed to for a while -- but something about brain surgery makes it more imminent at the moment. We have met with a couple of different doctors to get different opinions, now we move forward with our choices.

I believe we have landed on a surgeon, and will be staying in Houston where our entire support system (give or take a few) is within 4 hours of us. The plan right now is that I will be having a cerebral angiogram next Thursday in the afternoon to look more in depth at what is going on in my brain as well as to look for donor arteries that can be used to do a direct bypass on each side of my brain. From there, we will set up surgeries that will be 6-8 weeks apart.

This article came out yesterday just before we went to meet the doctor that we are planning to use -- so I wanted to share it with you as well.

I'm hosting fundraisers for myself, because these procedures aren't going to be cheap -- and anything I can do to take some burden/stress off of John right now makes me at least feel like I'm a little bit in control of my own life.

Scentsy (new spring catalog!!!)
Wildtree (Simple. Healthy. Dinner. is a good new program OR if you're interested in a freezer meal plan, contact me and I'll get you a menu together)

Jumbled Up Emotions

I don't know if I'm normal or not, but I feel like I'm living in the part of the movie Something's Gotta Give after Harry has the heart attack when his emotions are completely out of control. This is so me! I'm grateful that I was able to come home to my boys without there being some serious change to our routine. I'm embarrassed and ashamed that this happened to me at 34. I'm furious that I'm stuck in a body that on the inside is 30ish years older than it really is. I'm terrified that it'll all happen again at some point in the future.

My emotions since being in the hospital are really all over the map. Throw in these migraines, and I'm a complete mess. Mainly -- I would think no one notices it except for me, other than the fact that I've pretty much dropped out of society.

I don't want to do anywhere or be around people much at all. I mainly stick to the folks that share my last name right now because I'm ashamed of my feelings and entire ordeal. I mean lets face it folks -- it's a wake up call of sorts and a very scary one. Could it have been worse? Sure. However, I would say that anytime your brain goes nuts and you can't speak for any amount of time - it's enough to scare you into the ER.

I'm not sure how to break back into normal. Maybe I'm not supposed to? Maybe this is a call to give up some things and refocus on others... there really isn't a way to know for sure. I think for now, if I'm not 100% interested in an activity -- I think I'll skip it and do something else.

I will figure it all out eventually. For now, I'm just waiting for my follow up appointment with the neurologist. It was moved back to the 21st-- so we'll have to see what she says in terms of the migraines and if we need further testing on my small blood vessels.

Mommy-sitter

I feel like I need a Mommy-sitter, someone to babysit me while John is at work. I have a migraine today -- and I swear it has both of us freaking out. I am trying to just realize that there is bad weather in the area, and it could be a result of that.

Is it? I don't know. I just know that my head hurts - which wasn't happening in the hospital -- so it's different. I haven't lost my ability to speak or form sentences... I'm completely normal other than this headache and shakiness.

I left the hospital diagnosed with a sinus infection on top of the other issues, and before this attack -- I would have just attributed everything to the infection, but now... I'm second guessing and questioning everything. I wonder if this is the new normal -- where everything is over analyzed because we are nervous about all of this happening again. Or does this fade over time where we get back to not worrying about it all the time?

I hope that it's the ladder because it makes me sad to think that at 34, my life has become a constant fear of my health turning for the worse.

Maybe we'd feel more comfortable if I had a person watching me for signs of something being off? Maybe it would be better if this wasn't a super crazy work week for John -- including working through the weekend? There aren't any real answers -- and maybe it would be okay if the boys understood the concept of 911?

One thing I can say with a little more certainty is that if they had found something -- a definitive cause of this attack, and then fixed it -- I think there wouldn't be this *thing* hanging out there where we are waiting for the shoe to drop. I'm not sure how to move forward without fear, and on top of that -- I've got a sick little man to take care of.

My poor James has a terrible cough that is keeping him from sleeping, and a fever... which I also have. James rarely is the one that is sick, and I hope that we can get him in to see our pediatrician tomorrow morning. If not, I pray that they'll call something in for him. I normally would give him some Delsym, or I would give it to Tyler... but it makes James a crazed maniac -- so I need something else for him.

Keep us in your prayers, dear friends... we are struggling a bit over here.

In the Hospital... Still...

I spent a second night in the hospital, for basically no reason. Top that off with not getting breakfast or lunch... it was completely frustrating.

When I finally got out of the hospital, the doctor told me that I could have gotten out the night before. You DO NOT tell a woman that when she spent the day waiting for you to show up to sign the release forms! You also don't tell her that after having the lady in the room next door complain about my kids -- sigh.

We survived, thankfully.

I couldn't have been more thrilled to get to go home to be with my boys. I really missed being at home. While I'm nervous about the future and what may or may not ever happen again... I was brought to the place where I don't want to be away from my men any more than is absolutely necessary. I'm sure this will change over time, and I'll be ready for a break... today though, I'm just wanting to soak it all up.

The events of the weekend certainly brought me to the place that makes you realize life is previous and a gift. You aren't guaranteed to be here tomorrow - so you've got to make each day and moment count. I hope that I can do that and keep doing it with my family.

Even though this episode could have been much worse, it was certainly enough to scare you straight... I want to take it and turn it into a positive by continuing to change my diet and health both with the foods we eat, but adding in some exercise as well.

I'm not going off the deep end with it because I need to rest and recuperate, but it's time to take charge of this body that I'm in and try to make it the best it can be -- or at least better than it has been. I'd love some buddies along the way -- so let me know if you're interested in walking this journey together.

So, Basically I Had A Stroke

Let me set the picture for you...

Last Thursday night, we had just put the boys down for bed at about 7:30 and I came downstairs feeling a little light-headed. Otherwise, I felt totally normal. We had dinner around 8:00, and soon after things got strange. I stopped being able to properly communicate or get sentences out correctly. Everything was fine in my head, but the words were coming out jumbled or completely different. John noticed the problem and talked about calling an ambulance, but I got him to wait a few minutes. I asked for some advice from some nurses that I know, and decided that I should go get checked out at the hospital.

Here is an example of what happened with my speech & writing -- most that know me knew there was a problem when seeing this because I'm almost always clear with my writing.

A friend from my MOPS group came and took me to the emergency room. While being examined, they noticed that my eyes were twitching -- while I was following the doctor's finger with my eyes -- it was happening, but I never knew it. They did a CT scan & an EKG, and there weren't any brain bleeds -- so that was good news, but they admitted me for further testing the next morning.

I had a MRI/MRA and a electrocardiogram done on Friday morning... as well as being seen by speech therapy and physical therapy. The tests revealed that I have some abnormally small blood vessels in my brain, they appear to be all different sizes instead of being consistent. They didn't see any clear signs of why this happened -- so I was diagnosed as having a TIA. It could have been because of an abnormal migraine according to the neurologist, but I wasn't having a headache at the time -- so I guess we won't ever know exactly.

She is sending the tests out for further testing to make sure that there aren't some other tests that need to be ordered to check out why my vessels are smaller. I'll follow up with the doctor in about 3 weeks, and will have my other doctors check out my blood sugar medicines and my blood pressure medication as well. I just want to make sure everything is monitored closely.

In reality we don't have a whole lot of answers as to why this happened, but it certainly has scared us. What if this had happened while I was home alone with the boys?! That is the most terrifying thing to me, but of course I'm the only mother that my boys have... so it has convinced me even more that it's time to make some serious changes for my health and for our family.

I'm a little nervous about being alone with the boys, but I know that John is monitoring things too - and has done an amazing job this weekend picking up where I had to leave things. The boys did well -- or at least as well as they could, and they even got a dinner date out with Daddy.

Whoa Nelly

I'm taking a moment to tell you guys about this monster headache that has plagued me now for two days. It's completely nuts.

Have you ever dealt with toddlers while wanting to curl up in the fetal position while sitting in a quiet dark room? You know that headache where you literally feel like if someone breathes in your general direction you might just crumble under the pressure... that's the one.

Today I'm resorting to Midol and a large Sonic iced tea... neither seem to be touching the pain. I can't tell if it's more a hormone issue or if it has more to do with the weather being completely bi-polar this year. Either way - it stinks and I'm ready for it to be over.

It makes me want to spend nap time with my eyes closed, but I really have things to get done... but today, I'm giving in... I'm saying "uncle" and going to lay down while the boys are down for their naps. I'm going to pray that the activities I have planned for them keep them entertained enough during the awake hours to keep them relatively quiet and occupied.

It's times like this that being a stay at home Mom sucks. There really aren't any sick days... and you're pretty much on call at a moment's notice all day long. I certainly wouldn't trade the job for anything in the world, but today - I kinda wish that we had a day care to take them to so that momma could take something stronger than Midol or Tylenol to combat this pounding in my head.

What are your best headache remedies?

Week in review

Things have been so crazy lately - that my blog has suffered a little. I wanted to give an update on a few things...

Math Class...
Things with the math class are continuing to go well - I have roughly a 100 average - and I say roughly because it's actually higher. There have been a couple of assignments that were worth 108 points which brings the average over the typical 100%. John and I are really please with the progress. My mid-term is this weekend, and from there I'll only have two chapters to complete before the final during the first week of December. I can't wait to finish this up and be able to move forward with applying to the school districts again.

Tingling & Numbness in arms & legs...
Things with my testing so far have gone well. I had an ultrasound on my veins, and nothing major was there to report. I went to the neurologist to get her opinion and will be having a test on Thursday morning to see if I might have carpel tunnel syndrome in my hands. The test is called an EMG - basically they test the electrical reactions of your nerves and muscles by pricking you in different places. (YUCK!) The neurologist wanted to also send me for a MRI of my spine and my brain to rule out the possibility of me being in the early stages of MS. She didn't really think it was anything to worry about, but wanted to rule it out completely. She didn't have much good news in terms of my legs - she didn't see any neuropothy from the diabetes, and said that there isn't much that can be done about it.

Weight Loss Surgery
The news from John's company hasn't been good - so we've had to come around to plan B. For now, we are going to get a loan from a family member to pay for me to have the surgery. (Dave Ramsey... this is to save my life...) It is a very open ended type of loan, and I've come up with several options on how it can be paid off... anyway... I've got an appointment with my new surgeon on Friday morning to find out what the next steps are, and we'll go from there. John's plan is to go back on Medifast - those that remember us doing that - it's shakes and soups. He has a very strong will, and will be successful with that program. Since I won't be eating - there won't be temptation for him, and vice versa.

The reason we're pushing forward with the surgery for me is for a couple of reasons:
1) This will help get me off of all my medications for diabetes and blood pressure
2) This will cure the diabetes problem so that I can carry a child in the next 18-24 months

Please continue to pray for us, and I will keep everyone updated with the progress of how things are going.

Lemon Law

Does the lemon law apply to people? If so - I'd like to get a refund on myself... I feel so much like a 95 year old these days - it's so much about my various ailments, and not enough acting like a normal 29 year old person. It gets depressing at times. I've got a week full of doctors appointments - well they bleed into next week too.

It seems that last Monday my body decided it has had enough of playing along... so my arms and legs started having periods of numbness and tingling. It's a very weird feeling too - my first thought was "I'm having a heart attack or a stroke" but I didn't really want to let on that I was scared that bad. I gave it a day to see if it was just a random thing for the day, but it wasn't - so I called my doctor.

He brought me in and since the surgeries are not happening as soon as orginally planned - we changed all my medicines, and he scheduled me to see a neurologist. I'm also having ultrasounds done of all my arms and legs to see if my blood is circulating properly.

I have the ultrasound tomorrow, and see the neurologist on Monday. In the meantime - I have an appointment with my nutritionist on Thursday... I'm sure that my boss is loving me right now!! Thank goodness he's going to Washington D.C. tomorrow and won't be around to actually see me gone. (He knows about the appointments, but out of sight - out of mind.)

I'll post updates as I know more.