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 🤦‍♀️

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

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

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.

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. 

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. 

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

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

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?"