When I got married and moved to Colorado, I had been used to being rejected at the first indication that there was something "wrong" with me. Every time I got sick, my husband was there for me. Every time I expressed the fear of being rejected or abandoned, he reassured me that he was not going anywhere.
Because my previous shunt had lasted twenty years, we fully expected me to not need another shunt replacement for the next 20 years. Because of this, I only shared the basics of the information about the condition. I told him what had happened when it went out in 2004, and a little bit about what happened after. Because I had shared this much, he was able to recognize when it went out again after just three and a half years, not quite 2 years after we got married. We were working at an airline together, and I learned that missing work due to health problems leads to losing your health insurance, because there is no paycheck to take the premium out of. Thankfully, Tim was able to add me to his insurance. I also learned that employers count on employees not knowing laws about losing work over illness. My manager threatened to not keep my job for me when I recovered from surgery.
I worked at that airline for two years, and in that time, I still felt the effects of that shunt failure. I had memory problems, trouble learning new concepts, and after almost two years, ultimately lost my job to memory issues that led to a major mistake. Nobody around me understood that any of this was connected in any way to hydrocephalus. I didn't even connect the dots until this year...
I started working as a caregiver for my aunt in 2015: first briefly in August while visiting, then permanently when we moved to Montana in October. This is a part-time job, but I have learned that I no longer have the energy to work full-time outside the home, along with the memory continuing to get worse.
After three pregnancies, I learned the effects that this has on a VP shunt. My shunt increased its flow to compensate for the added pressure on the tubing. Unfortunately, the flow did not go back down to its previous levels. As I am in the first generation to reach childbearing years with this type of shunt, this problem was fairly new territory to my doctors. Last October, I went in for another shunt replacement: this time, it was an adjustable valve, and leaving the previous tubing in place.
It has been nine months since that surgery, and I am STILL having memory problems to the point that I have alarms on my phone for EVERYTHING, because I can't remember what day it is. I am not allowed to drive without google maps, because on days the barometric pressure is up and down, not only do I deal with the headaches, but I don't recognize my usual routes and get lost. It is a scary feeling to go somewhere you SHOULD know from memory and have no idea how to get there, or to be on your own street and not recognize it.
To others, the condition is "fixed" and I should be all better. They ask when I am going to stop talking about it. This tells me they are tired of hearing about it. Others, when I do say that I am having a high pain or low energy day, say "oh, well..." This tells me they don't care or are just sick of hearing about it. Either way, it has taught me to lean on God, and not on others. People will let me down, but God says "I will never leave you nor forsake you." Hebrews 13:5b
"For you formed my inward parts; you knitted me together in my mother's womb. I will praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well." Ps. 139:13-14
Tuesday, July 30, 2019
Tuesday, July 23, 2019
Hydrocephalus: Gaining Insight, Part 1
Many people don't realize the widespread effect hydrocephalus has on a person. I have had hydrocephalus since I was a week or two old, cause by a fast and hard birth. In the first year of my life, I had nine VP shunt surgeries, and 3 eye surgeries to try to correct muscles that were damaged by fluid buildup. At that time, that particular shunt surgery was still new enough that the whole process of getting the right type of valve was still trial and error. My surgeries were at the time of the infancy of the autoregulating valves. Before this, valves depended greatly on gravity, which meant they didn't adjust to positional changes.
Because these valves were so new, and because it took so many tries to find one that worked for me, my family had no idea how long this valve would last before having to be replaced. Every time I had an unexplained illness, every time I had a sick headache, we went in to get it checked out. I can only imagine the stress that put on my dad. He used to call me his million dollar baby. That 9th valve that was placed just before I turned one thankfully, lasted until three months before I turned 21.
When I was growing up, I made it a point to not talk about my hydrocephalus. I was already the "weird kid." I was already an outcast. I didn't want to give other kids more reasons to reject me. In the locker room at P.E., I hid to change clothes, because I didn't want anyone asking about the scar on my abdomen. I had to be careful what activities I participated in, because we didn't know what the effects any impact to the abdomen might have on the tubing.
I went back to school the following year, but my memory was having problems. I was no longer able to retain information properly. I was no longer allowed to take my crochet projects to class. Nobody had any continuing sympathy: to them the condition was treated, the problem was "solved," and I should be fine. I could not figure out what was wrong with me, and why I was having so much more trouble with school if I was "better."
I met my husband that second year. We started hanging out non-stop, along with his roommate. Second semester of that year, on St. Patrick's Day, he asked me out. Three weeks and three days later, he proposed. Almost immediately, everyone around us tried to talk him out of marrying me, telling him about my surgery the previous year, that he didn't know what he was getting into, and that marrying me would be risky. They showed their true colors that day, and I started to distance myself from them.
I went back to school the following semester and had an even harder time in class. My dad and I had an agreement that the first time I got a D for a semester grade, I would be paying for the rest of school myself. Though my head didn't hurt, I just could not retain information, and did not do well in my classes. I dropped out at Christmas break, got married, and moved to Colorado.
Because these valves were so new, and because it took so many tries to find one that worked for me, my family had no idea how long this valve would last before having to be replaced. Every time I had an unexplained illness, every time I had a sick headache, we went in to get it checked out. I can only imagine the stress that put on my dad. He used to call me his million dollar baby. That 9th valve that was placed just before I turned one thankfully, lasted until three months before I turned 21.
When I was growing up, I made it a point to not talk about my hydrocephalus. I was already the "weird kid." I was already an outcast. I didn't want to give other kids more reasons to reject me. In the locker room at P.E., I hid to change clothes, because I didn't want anyone asking about the scar on my abdomen. I had to be careful what activities I participated in, because we didn't know what the effects any impact to the abdomen might have on the tubing.
At the time of that dreaded shunt failure, I was in college and did not recognize the symptoms until it got to the point that I was not waking up for days at a time. I am amazed I passed that year of college, let alone with As and Bs. To stay awake in class, I was having to keep my hands busy. I did this by crocheting, and in the process, I made 2 full-size bedspreads. My professors were amazingly very understanding in allowing me to do this. When I went out, the cold winter air would help me stay conscious for long walks, but as soon as I got back into a warm building, I had to hurry as best I could to a safe place to collapse, to avoid passing out. I ended up having shunt replacement surgery less than a month before the end of spring semester and missed the rest of my classes. I was still recovering from surgery, and even still had the bandage on my head when I went back to attend my classmates' graduation, as was required of all students. I had not received any kind of excuse from this activity.
I went back to school the following year, but my memory was having problems. I was no longer able to retain information properly. I was no longer allowed to take my crochet projects to class. Nobody had any continuing sympathy: to them the condition was treated, the problem was "solved," and I should be fine. I could not figure out what was wrong with me, and why I was having so much more trouble with school if I was "better."
I met my husband that second year. We started hanging out non-stop, along with his roommate. Second semester of that year, on St. Patrick's Day, he asked me out. Three weeks and three days later, he proposed. Almost immediately, everyone around us tried to talk him out of marrying me, telling him about my surgery the previous year, that he didn't know what he was getting into, and that marrying me would be risky. They showed their true colors that day, and I started to distance myself from them.
I went back to school the following semester and had an even harder time in class. My dad and I had an agreement that the first time I got a D for a semester grade, I would be paying for the rest of school myself. Though my head didn't hurt, I just could not retain information, and did not do well in my classes. I dropped out at Christmas break, got married, and moved to Colorado.
Tuesday, June 25, 2019
Extraordinary
Growing up, I hated that I was different. I did everything I could to hide everything about my hydrocephalus: the pain, the scars, Then just before my surgery last year, I read something that changed my view...
The Glow Stick:
"I was in Dollar Tree last night and there was a lady and two kids behind me in the LONG line. One was a big kid, one was a toddler. The bigger one had a pack of glow sticks and the baby was screaming for them so the Mom opened the pack and gave him one, which stopped his tears. He walked around with it smiling, but then the bigger boy took it and the baby started screaming again. Just as the Mom was about to fuss at the older child, he bent the glow sticks and handed it back to the baby. As we walked outside at the same time, the baby noticed that the stick was now glowing and his brother said "I had to break it so you could get the full effect from it." I almost ran because l could hear God saying to me, "I had to break you too show you why I created you. You had to go through it so you could fulfill your purpose." That little baby was happy just swinging that "unbroken" glow sticks around in the air because he didn't understand what it was created to do which was "glow".
There are some people who will be content just "being" but some of us that God has chosen, we have to be "broken". We have to get sick. We have to lose a job. We go through divorce. We have to bury our spouse, parents, best friend, or our child because, in those moments of desperation, God is breaking us but when the breaking is done, then we will be able to see the reason for which we were created."
Many times, I asked God why I couldn't be normal. Why did I have to be "broken" and different? A few people told me that God doesn't make mistakes, and that it all has a reason. Many others were so uncomfortable with seeing my scars and hearing my story that those voices drowned out the ones that said I wasn't a mistake. When I asked "Why me? Why do I have to be broken?" A still small voice said "Why not?" Then I read this little story about the little boy and the glow stick, and started to see clearly. As life, illnesses, and challenges broke me down, they gave opportunity for Christ's love and light to shine through. There have been so many people I have been able to talk to and make connections with that I never would have met had I not been needing VP shunt surgeries.
Psalm 139
1 O Lord, you have searched me and known me!
2 You know when I sit down and when I rise up;
you discern my thoughts from afar.
3 You search out my path and my lying down
and are acquainted with all my ways.
4 Even before a word is on my tongue,
behold, O Lord, you know it altogether.
5 You hem me in, behind and before,
and lay your hand upon me.
6 Such knowledge is too wonderful for me;
it is high; I cannot attain it.
7 Where shall I go from your Spirit?
Or where shall I flee from your presence?
8 If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
9 If I take the wings of the morning
and dwell in the uttermost parts of the sea,
10 even there your hand shall lead me,
and your right hand shall hold me.
11 If I say, “Surely the darkness shall cover me,
and the light about me be night,”
12 even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.
13 For you formed my inward parts;
you knitted me together in my mother's womb.
14 I praise you, for I am fearfully and wonderfully made.[a]
Wonderful are your works;
my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
17 How precious to me are your thoughts, O God!
How vast is the sum of them!
18 If I would count them, they are more than the sand.
I awake, and I am still with you.
I am no accident. My hydrocephalus is no accident. He formed me I am fearfully and wonderfully made. The fact that I am alive today, with only minor effects from the hydrocephalus and shunt system is a miracle and means that God has a plan for my life. I still deal with headaches, shunt pain, and tenderness. I have to be careful how I style my hair, so it doesn't pull. I have to sleep more than most people my age. Too much noise literally vibrates my head to a point of hurting. Pushing my physical limits means paying for it for days. But it also puts me in a position to understand what others are going through. He never left me, but He walked through with me all the way, at some points carrying me. Because of this, I now count my blessings and each time I go in for another re-check or revision, I go in with the mindset of "okay God, use me. Whose life do you need me to touch?"
Why be ordinary when you can be extraordinary?
Monday, June 10, 2019
Socialization
As a homeschooling mom, I keep hearing from others that my children need more social interaction. When I was in a traditional school, I was constantly told "You're not here to socialize." What do I do for socialization? I take them to the store. I take them to the mall. I take them to the park. I take them with me wherever I go. I constantly hear how well behaved they are in public, how impressed people are with how they act. At the same time, they are learning where they will use their education in real life.
For math and science this year, we learned how to cook and make soap. My oldest is learning how much money things cost. As I am getting ready for the day today, I am thinking about what today's lesson will be: the work that goes into earning an income. When I was a child, my dad always said my grades were the wages for my work at school. We haven't been doing this style of grading: we check the work, and if it's not done correctly, we re-teach the lesson, and they re-do the work. We continue this until the concept is learned. I have about 200 bars of handmade soap I need to sell, as well as a large inventory of hair accessories.
After we do bookwork this morning, I will be going through my inventory while the kids help their dad with yard work. At the end of the work done here at the house, we will have the excitement of walking to the park. We will get the interaction with other people that we all need, and take our school lessons with us, in the form of application.
For math and science this year, we learned how to cook and make soap. My oldest is learning how much money things cost. As I am getting ready for the day today, I am thinking about what today's lesson will be: the work that goes into earning an income. When I was a child, my dad always said my grades were the wages for my work at school. We haven't been doing this style of grading: we check the work, and if it's not done correctly, we re-teach the lesson, and they re-do the work. We continue this until the concept is learned. I have about 200 bars of handmade soap I need to sell, as well as a large inventory of hair accessories.
After we do bookwork this morning, I will be going through my inventory while the kids help their dad with yard work. At the end of the work done here at the house, we will have the excitement of walking to the park. We will get the interaction with other people that we all need, and take our school lessons with us, in the form of application.
Sunday, June 09, 2019
Weather Changes and Headaches
We have had a lot of weather changes lately, which leads to shunt headaches. After two days straight of shunt headaches, which then turned into a migraine. This morning, the pain was to the point that I was contemplating shaving my head. When I feel this way, it makes me extra thankful for my Lilla Rose products, and that I can set my own hours.
On the hardest days, I am thankful I have my husband to help me. I am thankful my children not only do well in homeschooling, but also go above and beyond in helping me with cataloguing my inventory. Working my business in the neighborhood means I get out in the fresh air. I am looking forward to a nice long walk around the neighborhood tomorrow.
Thursday, June 06, 2019
Day In the Park
Yesterday, the kids finished their schoolwork first thing in the morning, and we got to go spend the day at the park. It was amazing! The kids got to play at the splash pad and playground for over six hours, and I got to visit with other moms. Being a mom who is always with the kids has its great points, but sometimes, we just need that adult interaction.
While we were there, the children were able to play with others on the playground and splash pad for six hours while I visited with other moms. I was able to show them some solutions to hair headaches and breakage. I especially love that I am not having to spend hundreds of dollars replacing broken hair elastics, and I can use the same accessories for my hair and my 2-year-old's. I am thankful for my flexible schedule that allows me to do more with my family.
As I sit here working, I am also planning what our next family outing might be. I am looking forward to our next trip to a park to play in the water. What is your favorite activity for a scorching hot day? This morning, when our sprinklers got turned on for the season, the kids were already wanting to run through them. I guess we are all about playing in the water on hot summer days, even when we can't leave the house to do it.
Today, I am working online from home, as I am fighting another weather-related headache. I am thankful that my hair does not contribute to these headaches. My shunt and nerves cause enough of them. The blessing in that is that in understanding the problem of chronic headaches, I am able to empathize with others who get them and offer solutions. What are your biggest hair problems... accessories that break too easily and have to be replaced on a regular basis? Hair headaches? Hair breakage making it hard to grow hair out? Too hot or heavy to wear it down and too painful to put it up? (That last one was my problem)
Don't let hair problems get in your way this summer... get out and enjoy the sunshine and days at the park. For more information and hairstyling ideas, join my Facebook group here.
While we were there, the children were able to play with others on the playground and splash pad for six hours while I visited with other moms. I was able to show them some solutions to hair headaches and breakage. I especially love that I am not having to spend hundreds of dollars replacing broken hair elastics, and I can use the same accessories for my hair and my 2-year-old's. I am thankful for my flexible schedule that allows me to do more with my family.
As I sit here working, I am also planning what our next family outing might be. I am looking forward to our next trip to a park to play in the water. What is your favorite activity for a scorching hot day? This morning, when our sprinklers got turned on for the season, the kids were already wanting to run through them. I guess we are all about playing in the water on hot summer days, even when we can't leave the house to do it.
Today, I am working online from home, as I am fighting another weather-related headache. I am thankful that my hair does not contribute to these headaches. My shunt and nerves cause enough of them. The blessing in that is that in understanding the problem of chronic headaches, I am able to empathize with others who get them and offer solutions. What are your biggest hair problems... accessories that break too easily and have to be replaced on a regular basis? Hair headaches? Hair breakage making it hard to grow hair out? Too hot or heavy to wear it down and too painful to put it up? (That last one was my problem)
Don't let hair problems get in your way this summer... get out and enjoy the sunshine and days at the park. For more information and hairstyling ideas, join my Facebook group here.
Tuesday, June 04, 2019
Blessings
What comes to mind when we think of Blessings? It's usually not hardships that we think of. Many times, when hard times come, our natural reaction is "Why me?" Through my last couple of shunt surgeries, I have changesd my thinking... "Why not me?" and "What do You want to come out of this? What do you want me to learn?"
Romans 8:28, ESV
"And we know that for those who love God all things work together for good, for those who are called according to his purpose."
Ephesians 1:9-10 ESV
making known to us the mystery of his will, according to his purpose, which he set forth in Christ as a plan for the fullness of time, to unite all things in him, things in heaven and things on earth.
It may not be apparent to us at the time what the purpose of our struggle is, because it might not be for us. Our response to the struggle might be what someone else needs to learn something about God, or maybe, it takes God holding us in hardships for us to know that He is there. I have experienced both. In Ephesians 1, we see that the mystery of His will doesn't necessarily have to do with our own hardships, but salvation. We were not saved just for our benefit, but for God's glory. How is His glory accomplished? In blessing those who have been redeemed, others see, fulfilling His purpose as a plan to bring all to Him.
One might ask "how does hardship fall under this?" I have had a number of people ask me about the hope that I have, after each of these surgeries. 1 Peter 3:15 says "but in your hearts honor Christ the Lord as holy, always being prepared to make a defense to anyone who asks you for a reason for the hope that is in you; yet do it with gentleness and respect." My hope with each illness, each surgery has been in Christ. God knew my shunt was going to fail. He knew WHEN it would fail. He knew who I would come into contact with because of it.
Laura Story's song "Blessings" talks about how we pray for blessings, mercy, and prosperity. What if the blessings come through raindrops, and healing comes through tears. What if a thousand sleepless nights are what it takes to know you're near?" This song really spoke to me when I was going through the hardest times. I highly recommend listening to the whole song.
Since learning to depend on God for what I need. He has provided ways for me to generate income without having to worry about losing another job, and to connect with other people.
One might ask "how does hardship fall under this?" I have had a number of people ask me about the hope that I have, after each of these surgeries. 1 Peter 3:15 says "but in your hearts honor Christ the Lord as holy, always being prepared to make a defense to anyone who asks you for a reason for the hope that is in you; yet do it with gentleness and respect." My hope with each illness, each surgery has been in Christ. God knew my shunt was going to fail. He knew WHEN it would fail. He knew who I would come into contact with because of it.
Laura Story's song "Blessings" talks about how we pray for blessings, mercy, and prosperity. What if the blessings come through raindrops, and healing comes through tears. What if a thousand sleepless nights are what it takes to know you're near?" This song really spoke to me when I was going through the hardest times. I highly recommend listening to the whole song.
Since learning to depend on God for what I need. He has provided ways for me to generate income without having to worry about losing another job, and to connect with other people.
Monday, June 03, 2019
Return to Blogging
My family has had a busy few years, which has left me a bit overwhelmed and kind of crowded out my blog. In 2015, we moved to another state, and in 2016, we welcomed our third baby into the family: my third C-section, which has by far been the roughest for recovery and bouncing back. Three years later, the two boys are still in love with their baby sister. She calls them her boys. I am thankful I am able to be home with my children, overseeing their education. My oldest is now reading at a 3rd grade level, and doing first grade math and writing. Both of my boys are very interested in math, science, and the mechanics of how things work. This curiosity proved useful last fall, when we had to explain to them that something wasn't working right, and I was going to have to have surgery. I have hydrocephalus, and currently, there is no cure for this condition, just a treatment involving surgery. Last year, after almost a full year of headaches, and several months of steadily losing my memory, I had surgery to get my VP shunt replaced. This is another surgery that has taken quite a while to fully recover from, but I am finally feeling human again.
Through all of this, I have found new ways to adjust my routine, to conserve energy, and make the most of the energy I do have. I have not been able to work a full-time job outside the home since 2009. It never occurred to me that the memory issues that led to me making a mistake at that job and getting me fired had anything to do with my health, until I started doing more research after this last surgery. When I am over-tired, over-extended, or in any way stretching my physical limits for too long, I have to use bizarre amounts of concentration to do the simplest of tasks, and more often than not, I depend on a consistent schedule to even know what day it is. I figure out what day it is by what I'm doing or thinking what I did the day before. If this schedule changes, my days get mixed up, creating a cyclical effect.
I am thankful for my current job as my aunt's caregiver, and for the opportunity I have had this past year to supplement our income with another amazing endeavor. I will share more about that in the future, but for now, I am just happy to be back to feeling like myself again.
Through all of this, I have found new ways to adjust my routine, to conserve energy, and make the most of the energy I do have. I have not been able to work a full-time job outside the home since 2009. It never occurred to me that the memory issues that led to me making a mistake at that job and getting me fired had anything to do with my health, until I started doing more research after this last surgery. When I am over-tired, over-extended, or in any way stretching my physical limits for too long, I have to use bizarre amounts of concentration to do the simplest of tasks, and more often than not, I depend on a consistent schedule to even know what day it is. I figure out what day it is by what I'm doing or thinking what I did the day before. If this schedule changes, my days get mixed up, creating a cyclical effect.
I am thankful for my current job as my aunt's caregiver, and for the opportunity I have had this past year to supplement our income with another amazing endeavor. I will share more about that in the future, but for now, I am just happy to be back to feeling like myself again.
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