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
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