Wednesday, October 14, 2020

When Nothing Goes Right...

 Today, I look and feel like a frazzled mess. For the past couple of weeks, I have been dealing with some headaches, hearing loss, and dizziness, along with some other issues. I have been frustrated with not feeling well, trying to figure out if I just grin and bear it, or at what point I should see if something is actually wrong. I am learning, however, that stress tends to cause a lot of problems.


I have been dealing with a lot of stress lately. I am thankful though that the headaches are not anything like what they were before the surgeries. I am thankful that my hairstyles and hair accessories do not make my headaches worse. I am thankful that even though getting everything done makes me crazy sometimes, I have three wonderful children I get to homeschool. I am thankful that we have income to work a budget from. I am thankful we have a roof over our heads, warm clothes to wear, and warm beds to sleep in.

I am hoping things will settle down soon, and I will be able to work my business more consistently. I am looking forward to spending time with other ladies and making friends..

Monday, July 27, 2020

Being Judged

In the past few months, I have had a hard time giving myself grace as I heal from all of these surgeries. I have had pain, and now that the pain is gone, I feel like it's taking forever to get my strength back.

This past week, my worst fears were realized as I learned that someone else was judging me too.

I have often felt overwhelmed with the effects of hydrocephalus and the related surgeries. I have often felt like I just can't deal with tasks, no matter how simple and basic they seem. I often feel like I am not good enough. Then a small voice tells me "My grace is enough."

2 Corinthians 12:9 ESV

But he said to me, (A)“My grace is sufficient for you, for (B)my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that (C)the power of Christ may rest upon me.

There are so many effects of hydrocephalus that affect me every day, that nobody ever sees. Many of these affect every area of my life, and I have to make moment by moment conscious efforts to push past them.

When I feel I am not good enough, He says "My grace is enough."

When I feel I am not strong enough, He says "I will be your strength." (Isaiah 41:10; Exodus 15:2)

When I feel alone and abandoned, He says "I will never leave you." (Deuteronomy 31:8; Hebrews 13:5)

When I feel I am unable to go on, He says "I am able" (2 Timothy 1:12)

I can do this with His help, but it will take time. If anything, all of this has given me an extreme empathy for those with disabilities that are not obvious to others.

I am learning how to give myself grace as I heal from 7 (yes, SEVEN) major surgeries since April, take care of my home and 3 children, and try to work my hair accessories business. I am blessed and thankful that I have help with the kids, but the other tasks take time to learn how to juggle all over again. 

I will not only survive, but with His help, I will THRIVE!

For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

Romans 8:38‭-‬39 ESV

Thursday, July 16, 2020

Impatient With Healing

One week ago today, I went to the hospital. Two days ago, I came home after 2 surgeries. I am feeling so much better! Pain is minimal, though it will take quite a while to get my energy back. Right now, I can only be up for 10-30 minutes at a time, then I need to rest for an hour or two. It's frustrating, but I will do what I need to do in order to not end up needing more surgery.

I am currently learning how to work my business from my bed and recliner. As I recover, I am currently looking for ladies who are interested in trying something new for their hair, and ladies who would like to join my team and earn a little bit of extra income.

Tuesday, July 14, 2020

I'm Bustin' Out of Here!

This has been a shorter stay than I had last month, and the medical team has been just as wonderful. But let's be honest: I'm tired of being in the hospital!
Dr. Piedra came in this morning and ordered my discharge meds and paperwork. I guess they decided that a patient who can walk the halls for 30 minutes to an hour at a time doesn't need to stay in the hospital. 😊
This is essentially what I looked like walking the halls.

I am looking forward to getting home, washing my hair, cooking my own food, and sleeping in my own bed. Soreness is already going down, so I'm also looking forward to using my Flexi Clips again. I love that my Lilla Rose products are never a problem on my head. We just had too many scans that required no metal in my hair, & the soreness in my neck from a new incision messed with my flexibility for a day or so.

The doctor and I are hoping that this will be the last head surgery for ten or twenty years. Either way, I know God has something planned for me, because I am still here.

The Lord is my strength and my song;  he has become my salvation.
Psalm 118:14 ESV

God , the Lord, is my strength;  he makes my feet like the deer’s; he makes me tread on my high places.  To the choirmaster: with stringed instruments.
Habakkuk 3:19 ESV

Monday, July 13, 2020

Relief

I had surgery this morning at 0930 to put the shunt system back on the inside. I have had a Ventriculoperitoneal (VP) shunt my whole life, since I was a couple of weeks old. This morning, my first Ventriculoatrial (VA) shunt was placed. My shunt now drains into the right atrium of the heart via the internal jugular vein. 
I don't know what to expect in the future from this, but I do know that I already feel SO MUCH better. It might be a while before I have the flexibility to do my hair nicely, but that will come with time. For right now, I am just thankful to get my health back. Pain has has been manageable, and I have been sleeping a lot today. I am looking forward to getting home in the next day or two.

Philipians 4:13

“I can do everything through him who gives me strength.”

Sunday, July 12, 2020

So Many Feelings...

I don't even know where to start with this. There is a light at the end of the tunnel, and surgery is tomorrow. I will be happy to get it over with and hopefully (prayerfully) have no more surgeries for a VERY long time after that. I am nervous about this surgery being different from past shunt surgeries. I am nervous about what it might mean for the fluid to drain into my heart. I'm try not to think about it, but here in the ICU, there is a lot of time to think.

Tim came to see me today. We played some card games, watched some TV, talked... then we said our "see you later." I cried as we held each other for 5-10 minutes. 
As we head into this next step, I am reminded that I am not alone, even when I feel isolated from everyone I love.

for he has said, “I will never leave you nor forsake you.” So we can confidently say,  “The Lord is my helper;  I will not fear; what can man do to me?”
Hebrews 13:5‭b-‬6 ESV

Behold, God is my helper; the Lord is the upholder of my life.
Psalm 54:4 ESV

“Behold, God is my salvation; I will trust, and will not be afraid; for the Lord  God is my strength and my song, and he has become my salvation.”
Isaiah 12:2 ESV

God , the Lord, is my strength;  he makes my feet like the deer’s; he makes me tread on my high places.  To the choirmaster: with stringed instruments.
Habakkuk 3:19 ESV

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26 ESV

Saturday, July 11, 2020

I Cried Tonight

Sometimes it's hard to be strong all the time. Sometimes, when you see someone fall apart, it's because they've been strong for too long. Usually, I feel like I have to be strong for everyone around me. Tonight, it got to be too much, and I cried for the first time since we've been dealing with these shunt problems... since April. Friends and family have been helping with the kids, Tim is working his usual schedule, and I feel like life is going on without me. I am allowed one visitor a day, and with the exception of Dad last month, they usually stay about an hour... I feel like asking for more is too much, too big of an inconvenience. Well, this too shall pass, right? In the meantime, I have the nurses to keep me company. 

Getting Real

This week and weekend have been rough. We are switching from a ventriculoperitoneal (VP) shunt to a ventriculoatrial (VA) shunt. This means my shunt will flow to the right atrium of the heart and CSF is absorbed via my blood stream, rather than finishing in the peritoneal (abdominal) cavity. What makes this scary for me is 1) this is a huge change and new territory for me after having a VP shunt for almost 37 years. 2) I have a tendency to build up scar tissue. The thought of this affecting a shunt that flows to my heart kind of scares me. Right now, scar tissue from the last couple of surgeries is causing some discomfort at the bottom of my ribcage. They say there is less chance blockage in a VA shunt, but I'm thinking about what happen on the outside of the catheter, & near my heart. 

No matter what happens, even though I don't know what the future holds, I know who holds the future in his hands. As I go through the storms of this life (like this series of surgeries), I will sing through the storm and raise a hallelujah. 

but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.
Isaiah 40:31 ESV

Friday, July 10, 2020

Feeling Better, News of the Next Step

Dr. Piedra came in and talked to me this morning. I am feeling a lot better, but will be in the ICU until the shunt is placed internally again.
When he places it back in (likely Monday or Tuesday), I will have a VA shunt instead of a VP shunt. This means it will drain into the artery that flows to my heart instead of draining into my abdominal cavity.

A lot of the nurses recognize me from last month, even the ones who were on the othwr side of the neuro floor. "You're the one who was up walking laps last month!" It's nice to be remembered. 

Keep your heart with all vigilance, for from it flow the springs of life.
Proverbs 4:23 ESV

Trust in the Lord with all your heart, and do not lean on your own understanding.  In all your ways acknowledge him, and he will make straight your paths.
Proverbs 3:5‭-‬6 ESV

Thursday, July 09, 2020

Round and Round and Round We Go...

I have been having mild to moderate abdominal pain since my last shunt surgery. Last night, the headache came back for the first time in 3 weeks, and the abdominal pain got worse. It was still bad this morning, so after an appointment my son had, I ended up at the Neurosurgeon's office. They sent me to the Emergency Department, and by 1600, I was in surgery. This was my 18th shunt-related surgery, with 1-2 more coming. 

The shunt has been externalized again, and the new catheter will be placed in a different spot in a few days. Im started to feel like I'm going through a revolving door at the hospital. But I'm still here, which means God is not done with me yet.

Jeremiah 29:11
"I know the plans I have for you" says the Lord: plans to prosper you, not to harm you. Plans to give you a hope and a future. 

Tuesday, July 07, 2020

Reduced Pain

It has been 3 weeks since my last surgery, and my pain levels have gone down significantly. It still hurts to raise my arms high enough to style my hair, but it is improving (slowly). This slow healing has caused some delays in getting back to doing my LIVE demos in my Facebook group

Foods and drinks make my stomach hurt, which naturally makes me eat less. As a result, I have lost ten pounds in a week. Laughing still hurts, as does too much standing and walking, but I'm finding I can bend more easily than I could even last week. There is definitely a learning curve when recovering from a series of multiple surgeries.

Pain has also kept me sleeping well, which is difficult to handle when you have three kids to take care of. With the kids home, I am doing a lot more cleaning, which is definitely going to slow down the healing process.


I am thankful for the time I did have while the kids were with their grandparents, and the extra help I got for a few days when the grandparents brought them back.

Monday, July 06, 2020

Slow Healing

It has been four weeks since I went to the hospital, and almost three weeks since my last surgery. I have been very impatient with the healing process this time around. Have you ever hurt your abdominal muscles putting your hair up? It stinks! Especially when you are trying to be able to do demos for Hair Accessories.
Someone asked me what I expected the recovery time to be, and I realized I don't know. The last time I had four consecutive surgeries was when I was an infant. Last night, I started having nightmares of another malfunction. I dreamed that they had to take the whole thing out, shave my whole head, & put a valve on the other side. I'm praying that this one heals and works just fine for decades to come. Currently, the only pain is abdominal. 
The kids came home from Nonna and Papa's house on Friday. I have Nonna and Papa's help today and tomorrow. I'm praying that after that, I am able to handle them, & that they are helpful instead of causing things to be more difficult. I am using this to teach my children that God uses all things, the good and the "bad" to work together for good. When anxiety about it wells up, all I have to do is take it to Him.

And we know that for those who love God all things work together for good, for those who are called according to his purpose.
Romans 8:28 ESV

He has made everything beautiful in its time. Also, he has put eternity into man’s heart, yet so that he cannot find out what God has done from the beginning to the end.
Ecclesiastes 3:11 ESV

casting all your anxieties on him, because he cares for you.
1 Peter 5:7 ESV

Thursday, July 02, 2020

If We Are The Body...

I want to start out by saying that I am thankful that for the last several years, I have been connected to wonderful churches who have been the hands and feet of Christ by showing love to their neighbors.

But he, desiring to justify himself, said to Jesus, “And who is my neighbor?” Jesus replied, “A man was going down from Jerusalem to Jericho, and he fell among robbers, who stripped him and beat him and departed, leaving him half dead.  Now by chance a priest was going down that road, and when he saw him he passed by on the other side.  So likewise a Levite, when he came to the place and saw him, passed by on the other side.  But a Samaritan, as he journeyed, came to where he was, and when he saw him, he had compassion.  He went to him and bound up his wounds, pouring on oil and wine. Then he set him on his own animal and brought him to an inn and took care of him.  And the next day he took out two denarii  and gave them to the innkeeper, saying, ‘Take care of him, and whatever more you spend, I will repay you when I come back.’  Which of these three, do you think, proved to be a neighbor to the man who fell among the robbers?”  He said, “The one who showed him mercy.” And Jesus said to him, “You go, and do likewise.”
Luke 10:29‭-‬37 ESV

In 4th grade, one year after I became a Christian (accepting Jesus as my personal savior and putting my own faith in Him), my dad moved my brothers & me to a "better" school. I was bullied there from day one. When I reported it, the bullies had no repercussions (for the most part), but I got in trouble for reporting it.
Proverb 18:24 KJV was quoted at me regularly "A man that hath friends must shew himself friendly: and there is a friend that sticketh closer than a brother." They followed this with "You're just not being friendly enough."

One classmate that knew me from the previous school helped start the fire that would burn for years, and my brothers helped fan the flames.
And the tongue is a fire, a world of iniquity: so is the tongue among our members, that it defileth the whole body, and setteth on fire the course of nature; and it is set on fire of hell.
James 3:6 KJV

Two classmates, a handful of teachers & older students supported me & helped me survive. Larissa and Susanna welcomed me into their friendship, and made a bigger impact on me than they will ever know. They helped me through some of the hardest years. The Baker family had a major positive impact on me. I still have the notes of encouragement that Matt wrote me 25 years ago. Mrs. Love, Mr. Bowden, Mrs. Monds, Mrs. Napier, Mr. Edwards, Mr. Edmonds, Mr. Edwards, & Mr. Turnbull are the other teachers who saw me as me, not judging me by who I may or may not be related to. Not by the fact that I wasn't related to "the right staff" or best friends with their kids (who rejected me from the beginning).
I was different. First I was the new kid, then it was just that I talked funny. I was slower... just different. In the locker room, I tried to hide to change clothes, beause my scars from hydrocephalus were just one more way I was "different." I made it a point to not talk about my medical issues that made me different, even when it led to missed school days for EEGs and eye surgeries. I didn't want to give them more ammo. When I tried out for wrestling cheerleading, I was handed a stack of papers on how to lose weight. I still have nightmares that I will lose so much weight that I am literally skin stretched over bone, & people will still say I'm fat. To some people, I will never be good enough. 
In addition to the general bullying, I was judged by my brothers' actions. My family was judged for being a single-parent home, and who knows what else.

When my family started going to church there, I got reamed out for sitting with "the bus kids" instead of the ACS kids. I sat with the bus kids because they treated me with kindness and decency. I met friends among the bus kids that I may never have met had I not been subjected to such cruelty from they kids that thought they were better.
These are the verses I think of when I think of the public school kids I sat with in that youth group:
For I was an hungred, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in:   Naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me.   Then shall the righteous answer him, saying, Lord, when saw we thee an hungred, and fed thee? or thirsty, and gave thee drink?   When saw we thee a stranger, and took thee in? or naked, and clothed thee?   Or when saw we thee sick, or in prison, and came unto thee?   And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.
Matthew 25:35‭-‬40 KJV
They were a friend to me, but I overheard so many conversations in that public school group where they lived out the rest of these verses for each other. 

The kid that started it all came back in 10th grade and tried to undo what he had done, but it had been going on for 6 years at that point. Kids started treating me with a little more decency in my last 2 years there, but it was too little, too late. I had been beaten down long enough that I saw myself as worthless. One thing that didn't help was certain teachers and office staff telling me that I "had a big mouth, & talked too much." I tried to change because of this statement, and as a result, almost got a detention for disrespect from another teacher. (Because he didn't realize what was going on, & that i was trying to change myself.) I had teachers accusing me of not doing the reading assignment studying for quizzes and tests, because of the way my memory worked. I had no idea at that point what was wrong with me. I didn't know that my memory problems were connected to hydrocephalus, & that this problem was common/ normal with hydrocephalus. 

 I graduated 19 years ago, & my family is still not welcome on the property, & when I got in trouble for being there 7-8 years ago, people who shouldn't have known me from Adam knew "stories" & connected me to that.

At my 10 year high school reunion, I was told by several classmates that they admired me for not being in the "cliques," & that they had respect and admiration for my being a friend to everyone. Anyone could come talk to me about anything (even those who were mean to me when they were with the crowd). I am thankful that I learned this, but I wouldn't wish the method of learning on anyone. I was the reject, the outcast: I didn't have a choice. I accepted everyone, because I knew what it was like to not be accepted. 

To this day, I have to talk myself into trusting people. I can't make myself ask for help when I need it. I am thankful that in the last 3 churches I have been a part of, I haven't had to ask, because the churches I have been a part of down here are being the body of Christ. Instead of tearing each other down, they are lifting and building each other up. I want to challenge you to look at how you treat others. Do you treat them with kindness and respect? Treat others with kindness.
“So   whatever you wish that others would do to you, do also to them, for this is   the Law and the Prophets.
Matthew 7:12 ESV

A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another.  By this all people will know that you are my disciples, if you have love for one another.”
John 13:34‭-‬35 ESV

Wednesday, July 01, 2020

A Difficult Time

This time of healing is a difficult time. After a certain amount of time, impatience and frustration sets in. I don't bounce back as quickly as I used to... Then I remember im older than I used to be. This means my body will take longer to heal. This particular time, I'm healing from FOUR surgeries at one time, and im not sure I was completely healed from the one I had 2 months prior before these were done.
What am I learning from this experience? 
To be patient: patient with myself, patient with my doctors when they don't listen, patient with God as He teaches me and shows me things, patient with my body as it takes longer to heal
How to ask for help: why is it so hard to ask for help? Is it because it makes us feel weak? Is it because we think others expect us to be able to do things without help? Is it because we're afraid of being an inconvenience to someone? For me, it's all of the above, to some extent. I end up doing too much because of this, which means I stretch out my healing time 😢
How to slow down and rest: What is this slow down? What is rest? How do you do that? Well, these past few weeks have forced me to learn, and thanks to  in-laws taking the kids, friends coming over to help, & a loving husband calling from work to check on me multiple times a day, I have the opportunity.

Tuesday, June 30, 2020

Pain With No Answers

Well, today was my appointment with GYN to see about the ovarian cysts that have been causing problems for 20+ years, including causing a shunt malfunction or two. My current pain has had me doubling over since Saturday. Apparently, what they told me Sunday morning is NOT what they put in my chart. Sunday, they told me I had another cyst, but my chart says "a pocket of fluid." GYN is saying she thinks the pain is too high to be an ovarian cyst, and that she thinks the "pocket of fluid" is from the shunt surgery. I asked "If that's the case, why was the post-op pain almost gone, then this pain spiked the day my hormone levels changed?"

So, she is putting me on birth control. Possible side effects... cysts or clots 🤦‍♀️

Monday, June 29, 2020

Good Morning!

This past weekend, when Tim got home, I picked him up from the truck stop, and we went straight to do some car shopping to replace the van that was totalled out while I was in the hospital. I started out with plenty of energy, but took my cane, just in case I started having problems with my balance. When we got home, I started having abdominal pain. We had made plans for a date night on Saturday, but the pain flared up so suddenly and so severely, that I couldn't do anything but sit in my recliner with a heating pad. We couldn't go out to dinner and a drive-in movie because of my pain, so my sweet and loving hubby ordered the exact meal we would have gone out to eat, and we enjoyed time together at home.

That night, I woke up in pain multiple times, and had trouble lying back down. At 3am on Sunday, After several hours of this, Tim was worried & said "get dressed. We're going to the ED." We got there a little after 0400, and they ran some tests. My shunt is okay, but I have another ovarian cyst. They gave me pain meds and sent me home with "let's wait and see what happens." I'm thinking "déjà vu"
So, last night, Tim dropped off my new prescription (which now has me flagged at the pharmacy, because of how many have been written for me this month, each by a different doctor), and told me to let him know when I decided what I wanted for lunch. I texted him, & he went all the way across town to get the Olive Garden dinner I asked for. After we ate lunch, I rested a while before we left to pick up my prescription and go to church.

It was good to see everyone at church, and I am so thankful for the friendships I have there. I am thankful for the people praying for me as we navigate this mess of pain, waiting for answers. I have an appointment tomorrow to see what they will do about the cysts. In the meantime, I am praying that God will use this time to draw me and others closer to Him.

And we know that all things work together for good to those who love Him and are called according to His purpose.
Romans 8:28

Friday, June 26, 2020

Sleepless Nights

Have you ever had nights where pain wakes you up and you can't go back to sleep? I have had too many of those. Right now, my head is good, and I'm thankful for that. The pain keeping me up now is abdominal. How long with this last? I think I made it worse by trying to move around too much the past few days. I am seeing where I need to work on my patience. Exhaustion makes pain worse, pain makes exhaustion worse... it's a vicious cycle. I need to rest so I can heal, but the pain is keeping me from resting.

"Come unto me all who are weary and heavy laden, and I will give you rest." — Matthew 11:28

Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you, yes, I will help you, I will uphold you with my righteous right hand. — Isaiah 41:10

A cheerful heart is good medicine, but a crushed spirit dries up the bones — Proverbs 17:22

Wednesday, June 24, 2020

Two Weeks is Too Soon?

I keep forgetting and trying to count from the day I had the first of those four surgeries. One week ago today, I had the fourth in a series of surgeries to unblock my shunt and get it operating correctly again. My brain keeps counting from the first day I was in the hospital instead of counting from the last surgery. So, it has been two weeks + 2 days since my shunt failure, one week since my last surgery, and only 6 days since my discharge. 
Since coming home, I have been resting, sleeping a lot, not getting anything done, just trying to heal. Today, I decided to try to start organizing the mess in my living room... Bad idea. I got two boxes in and had to stop because the pain flared up. At least I am learning to listen to my body.
Last night, I didn't sleep well because of abdominal pain, so I know better than to push through it.
The headaches are still gone, thankfully. These suckers, and the muscles surrounding them are what have been causing the most pain.
I have really been learning a major lesson in slowing down and resting. As I rest and heal, I will gain strength and be back to 100% soon enough. Until then, I will rest and lean on Him.

Tuesday, June 23, 2020

Back to Business

Two weeks ago yesterday, I checked myself into the ER, and by the end of that day, I had surgery on my shunt to flush out a clog. That flush didn't work, so a day later (2 weeks ago today), another surgery was done to temporarily externalize the shunt
This new scar is taking some getting used to for me.
This week, I am starting to feel more "human" again, and even doing my hair. The thing I love about doing my hair is that I am able to keep my long hair without causing extra pain.
Today, I ended up riding Lyft across town to pick up a rental car, & joked with the driver about my "fashion statement" of a quarter of my head being shaved.
I still put my hair in a bun for at night. It stays in all night, without falling out, and without causing pain.
This morning, I braided my own hair for the first time since coming home from the hospital. 
Clearly, my braided up-down could use some more practice, but it didn't hurt. It's not heavy, and the Flexi Clip doesn't push or pull on the tender incision. Because of this, I am able to keep my long hair. If you are looking for a less painful way to style your hair, contact me. I would love to help you out. 

Sunday, June 21, 2020

My Faith & Hope

After the last couple of weeks, these verses hit me in a new way... I was asked a few times at the hospital what was different about me, where my joy came from, & why I was able to smile through it all.

I have such a peace... if my shunt problems clear up, it means He has more for me to do here: He's still using me. If one of these times my shunt goes out, & doctors are unable to repair it, I will gain, because I will be whole and in the presence of the Lord. That is a GAIN!

As long as I am here, that means God has work for me to do in and through Him. That is for others, to lead them to Him.

for I know that through your prayers and the help of the Spirit of Jesus Christ this will turn out for my deliverance, as it is my eager expectation and hope that I will not be at all ashamed, but that with full courage now as always Christ will be honored in my body, whether by life or by death. For to me to live is Christ, and to die is gain. If I am to live in the flesh, that means fruitful labor for me. Yet which I shall choose I cannot tell. I am hard pressed between the two. My desire is to depart and be with Christ, for that is far better. But to remain in the flesh is more necessary on your account. Convinced of this, I know that I will remain and continue with you all, for your progress and joy in the faith, so that in me you may have ample cause to glory in Christ Jesus, because of my coming to you again.
Philippians 1:19‭-‬26 ESV
https://bible.com/bible/59/php.1.19-26.ESV

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,
1 Peter 3:15 ESV
https://bible.com/bible/59/1pe.3.15.ESV

Mental Healing

After each shunt surgery, there has been a bit of mental healing that needed to happen. My memory turns to mush, & I have to re-learn names, places, directions... This time, with four new incisions, I am also dealing with struggling with how I view myself. It sounds vain, but it has been trained, engraved in my mind by years of comments and remarks from others.

These comments and remarks are what led me to not talk about hydrocephalus, even try to hide everything that makes me different... for years. In school, I was the freak, the outcast. As an adult, each revision has been followed by people being "uncomfortable" with seeing my scars. Last night, I saw my collection of scars in the mirror, all at once for the first time. I saw myself through those other people's eyes, & called out to my husband that "I look like 'Frankenstein's monster'." He answered with humor. I know he doesn't see me the way I see myself. I know he loves me. It will take me time, but eventually, I will see myself the way my husband sees me: beautiful, & the way God sees me: Fearfully and wonderfully made. 

Thursday, June 18, 2020

Going Home, Maybe?

Well, I didn't sleep well last night, but not because of head pain... I haven't had a headache in a few days! At about 4:00 this morning, the nurse came & told me that in about 40 minutes, I would go down for a CT. This is just to make sure the new system is working properly, & the CSF fluids are at a good level.

Is it a good thing, or a bad thing when the CT team is excited to see you? We got down there, & the door was shut, so the nurse poked her head in to see if they were ready for me. When they asked who she had, & I said my name, one of them actually squealed! They tell me it's always good to see me, & they asked how I was feeling & what the most recent procedure was. When I told them about yesterday's surgery, & that I might be going home today, they were excited for me.

Now, we wait & see what the results say, & what Dr. Piedra thinks. I can't say enough how wonderfully blessed I am to have had such wonderful people taking care of me last week and this week.

Rejoice in the Lord always, and again I say Rejoice!
Philippians 4:4

“You are the light of the world. A city that is set on a hill cannot be hidden.
Nor do they light a lamp and put it under a basket, but on a lampstand, and it gives light to all who are in the house.
Let your light so shine before men, that they may see your good works and glorify your Father in heaven."
Matthew 5:14‭-‬16 NKJV

Wednesday, June 17, 2020

17th Shunt-related Surgery

This surgery was supposed to be yesterday, but the schedule got too full. I am so thankful for the amazing medical team that has been working with me since last Monday.

Today's surgery ended up being at about 2:30 this afternoon. I had an external shunt system since Tuesday the 9th, & today was the day to go back to an internal shunt. Dr. Piedra, the neurosurgeon, re-opened my head to connect new tubing to my existing adjustable shunt, & a general surgeon inserted the rest of the tube. I now have a new incision/scar near my collarbone that was where the temporary external shunt had been, and laproscopic incisions. I was out for about 2 hours, then had about a half hour of being alert & conversational before I could handle opening my eyes. After about an hour of ice chips & IV pain meds, I was ready to be transferred to my new room. I am now on the neuro floor, and may possibly be released tomorrow. The only pain I am still having is incisional (which is to be expected). I hadn't realized that I had been fighting/dealing with/ignoring headaches for so long that I had actually forgotten what it felt like to not have one. I have now been headache-free for 2-3 days. I am blessed and so very thankful for how well things went & how wonderful the staff had been.

Scripture for Healing

For the LORD protects the bones of the righteous; not one of them is broken!
-Psalm 34:20

‘I have seen what they do, but I will heal them anyway! I will lead them and comfort those who mourn, bringing words of praise to their lips. May they have abundant peace, both near and far,’ says the Lord, who heals them.
-Isaiah 57: 18-19

Heal me, O Lord, and I shall be healed; save me, and I shall be saved, for You are my praise.
-Jeremiah 17:14

For I will restore health to you, and your wounds I will heal, declares the Lord.
– Jeremiah 30:17

See now that I, even I, am He, and there is no god beside Me; I kill and I make alive; I wound and I heal; and there is none that can deliver out of My hand.
-Deuteronomy 32:39

Lord, your discipline is good, for it leads to life and health. You restore my health and allow me to live!
-Isaiah 38:16

For He wounds, but also binds; He strikes, but His hands also heal.
-Job 5:18

Have compassion on me, LORD, for I am weak. Heal me, LORD, for my bones are in agony.
-Psalm 6:2

A joyful heart is good medicine, but a crushed spirit dries up the bones.
-Proverbs 17:22

Whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable — if anything is excellent or praiseworthy — think about such things.
-Philippians 4:8

Tuesday, June 16, 2020

My Hydrocephalus Story, Updated (6/16/2020)... Including Social Effects

I have had hydrocephalus since just after I was born. In my first year, I had 9 shunt surgeries. One of those surgeries was to treat an infection. While they were dealing with the infection, pressure built up and caused eye problems, so I also had a few eye surgeries in that first year.

Hydrocephalus and the process of treating it in that first year could have caused so many problems: I could have been blind, deaf, or even vegetative. By the grace of God, I only deal with mild learning disabilities, memory issues (which is the worst in the couple of years after a revision), and slow motor skills, which includes speech. We had no idea how long that 9th shunt would last. As a child, I had a handful of eye muscle surgeries, but my shunt kept working.

As a child, because of the slow speech & struggles with academics, I ended up with some social struggles. I was bullied because I was different. I was called names that I will not repeat here. Adults excused the bullying: "I was the new kid," "boys will be boys," "suck it up. You're too sensitive," "to have a friend, you have to be a friend." I felt like i just wasn't good enough and never would be.

I had to wait until my 10 year reunion to hear that people admired me for accepting everyone & not being in a clique. I wasn't in a clique because I wasn't accepted. I accepted everyone because I knew what it felt like to not be accepted. People came to me about struggles, & I helped them, even if they were one of the people who were unkind to me. They told me I was easy to talk to about anything, but that didn't change how I was treated outside these one-on-one interactions. 

As an adult, I have had one more eye surgery & 7 more shunt-related surgeries, the most recent few being April 12th of this year (Easter Sunday), then 3 this past week. I have one more scheduled for tomorrow. Each shunt failure has been a little easier to recognize, for the most part.
The past 4 surgeries have been a little different, because the cause for the failure was different. The one at Easter was from a clog, but they couldn't see what caused the clog. That surgery was a "flush & reconnect." Jun 8th, I went into the ER for something completely unrelated, but that completely unrelated thing became the cause for another clog & shunt failure. An ovarian cyst had grown to a point that it was painful to stand up of move. I went in for the pain from that cyst, & when it ruptured, it clogged the shunt tubing. So, on the 8th, they tried the "flush & reconnect" that had worked 2 months ago. 24 hours later, symptoms were worse, so the system was removed, & an external shunt was placed. But part of the tubing broke off, so that led to general surgery going in to take out tubing on Friday. Now, I'm waiting for them to be able to switch it back to an internal system (scheduled for tomorrow, with the possibility of being moved up to today).

As a general rule, each surgery has required a longer recovery time than the previous. I am thankful that I am getting better though. I think the hardest part for me is the non-physical effects. The brain is the control center for everything else, so pressure on the brain, & the effects of the surgery itself affect pretty much every aspect of my life: mental, emotional, & physical.

This past week, a few nurses have noticed something different about me from all their other patients: Joy. They commented that I am always smiling, even after these major surgeries. Even after having 3 major surgeries in one week, & a 4th one on the schedule. I am thankful that this is what they see. I am thankful that they have started asking how I am still smiling through all of this. I am thankful to know that I have an opportunity to be a light. God doesn't promise us that we won't go through storms in this life, but He does promise that we don't have to go through them alone. He walks through the storms of this life with me.

One thing that has been different about the last few surgeries is that I have not had to cut all my hair off to avoid painful hair ties, clips, & pins touching or pulling on my scalp. I can put my hair up to keep the weight from pulling on my head, & pull it back in hairstyles that cover the incision without causing extra pain. This past week, nurses have enjoyed coming in to brush & braid my hair, & I have enjoyed the company. 

#BlowingBubblesWearingBaubles #Hydro #hydrocephalus #HydroWarrior

Jeremiah 29:11

For I know the plans I have for you says the Lord. Plans to prosper you and not to harm you. Plans to give you a hope and a future.

Roman's 8:28

And we know that all things work together for good to those who love Him, to those who are called according to His purpose.

Hebrews 13:5-6

And let your conversation be without covetousness, for He himself has said "I will never leave you, nor forsake you.

So we may boldly say "the Lord is my helper. I will not fear; What can man do to me?"