#4- It Would be Helpful if I Could Ninja Roll out of the Recliner

A head incision, a monkey named Henry, and a recliner are the characters in this story. Ah...my recliner. I do love it greatly. I avoided ever buying one because they are so hideous looking and impossible to blend into any style of living room. However, after my original VP shunt surgery, I found it hard to sleep in a flat bed, and I often rolled over on the bad side causing gross pillowslips and a ton of pain the next morning. Therefore, I surrendered my anti-recliner stance and began to desperately want one.

My fellow zipperhead planned better and purchased her duo of recliners BEFORE coming home from her surgery. Good thinking Gretchen! So thanks to some Christmas money, Kyle and I headed to Nebraska Furniture Mart to claim our comfy chair that would ruin my living room motif (I didn't really have one anyway). We settled on the biggest, cushioniest, ugliest chair in that small town of furniture. It had a "bump," non itchy brown material, and it rocked. Lastly, it reclined ALL the way back and remained in that reclining position, making it a perfect nest for a few weeks.

Henry, our friskiest child, is always climbing onto and off of laps when he's not jumping off couches, benches, and tables. He just has amazing balance and curiosity of how his body will land the higher he goes up.


So it wasn't too alarming when he climbed onto my lap one cold winter afternoon. I was taking advantage of the full reclining feature the chair offered when he wiggled onto my lap. Then he crawled up to the lumbar/headrest part of the recliner. Smack! 1/2 my body weight mixed with his made the recliner tip backwards. Like, all the way backwards. As in "I'm now staring at the ceiling with my legs in the air" backwards.

Now what I do?  Henry just rolls out of the situation effortlessly with a back ninja roll. I would have done the same (without the accompanying grace) if I didn't have 19 staples in my head. And the fact we fell into a corner made it impossible to roll out sideways.  Here is a pic of the little monkey peeking out of his demolition. He, of course, thought this whole thing was HILARIOUS!



My Monkey smiling at Dad before he helps me up

With such concern Franki, Moe, and Henry tried to pull me up; it was really cute, but they didn't know really how much I weighed. Luckily Moe is a responsible kid and was able to follow one command: Go Get Daddy! He ran downstairs to "Daddy's Workshop" and told Kyle he needed to help me (as if he hadn't heard the earth-rattling crash!). So Kyle comes upstairs to this ridiculous situation. Unfortunately, I did not learn from that and had two more recliner tips, but I was able to do that ungraceful ninja roll I wanted to execute earlier in the year.

A Heavy Whole Body Agitation

Putting the Top Ten on hold so I can share about my panic and how it might just be manifesting it's ugly head right now.

After every medical situation, I seem to have a period of high anxiety/panic. After the insomnia pre-term labor thing (don't know what to call it), I had two unproductive weeks. After the Thyroid Storm, I had at least a month where panic plagued my mind to such an extreme I could not care for my kids. When I had original VP shut fitted, I struggled so much I was inflicting physical pain to myself as an escape from the mental discomfort. Then after the Spring shunt malfunction I struggled a week or two with tears and anxiety. By Spring, I used my medication like it was prescribed so my "crazy" period was shortened and a lot less severe. As a result of all this, the past 5 weeks I have been waiting for my bacterial meningitis/pulling the shunt situation to cough up the panic hangover I've experienced the past 4 times.

Last week I thought maybe I dodged the panic by using my medication correctly and beginning to write about my story, so I rejoiced. However, today I woke up with that pre-panic comatose feeling that prequels high anxiety. It is not about what my mind is thinking or worried about. It is about the heavy whole body feeling of agitation. I wake up with it, and it follows me to the shower, to my daily activities, and then to bed where it typically keeps me awake. With this agitation I stay hyper-vigilant of my emotions and obsessively try to put a reason to why I feel this way. This morning when I woke up with the heavy feeling I came up with a list of whys...

1. I forgot a refill on my SSRI, Paxil, so I had to skip a day until I got it filled.
2. I am in the "beautiful" time of the month so that could be messing with my nerves.
3. I am off all the pain killers and from the past (a whole other story) I know my system unintentionally gets addicted to opium derived drugs quickly, so I may be feeling a little "withdrawal" 
4. It is cold and no chance for sun/Vitamin D exposure.
5. No exercise lately
6. Crumbing eating too

So today I try to fix all that. First, I fix my diet. I have been eating Eggo's leftover pumpkin waffles on sale at Hy Vee for breakfast, they really are so tasty. But today I make a breakfast of steel cut oatmeal, blueberries and Greek yogurt. Then I fill my script and immediately take one and a Vitamin D supplement while I try to linger in the Hy Vee parking lot to get some sun on my face and forearms. When I start shivering, I decide I have had enough Vitamin D. Though I truly wanted to skip it and stay in my recliner, I make it to a Lee's Summit Momma's meeting. Isolation is horrible for panic/anxiety/depression, so I go because that is what I am suppose to do. However, after the meeting is over, I feel the heaviness get heavier. I go home and try for a walk, but it is too cold outside. So I manically clean the house to get my heart rate up; then maybe I can consider that exercising. As for the "withdrawal" and "beautiful" time theories I reassure myself that time is the only cure for those. My last aid is to try writing. Maybe writing will make me feel like I have some kind of control over it...that heavy feeling?

Now tomorrow, just ONE day after trying to fix the heavy feeling, will be a pivotal day. Either I will wake up feeling a little bit better or the same. If I feel the same, pure panic will take over because I will IRRATIONALLY think I am in the throws of a major panic episode and fear will keep my mind from settling down and resting. I sure hope tomorrow will be better and lighter.

I am still hesitant sharing about my mind's thoughts because they are irrational a lot of the time. Plus they are not very funny and hard to make fun of. However, I can't truly share my story without sharing my authentic self  rather than just comical superficial stories about my neurosurgeon, Diego, Ebony, and Walter. So sitting here with this heaviness is where I am right now, and I hope anyone else who struggles with similar problems will empathize.

#5-A Christmas Eve Tale

After being released from my initial shunt surgery last December, my stomach gradually began to hurt. From near-OCD research on websites and group forums, I expected my gut to occasionally hurt due to the new junk being introduced to my perineum (stomach lining). Probably needlessly reminding you that a shunt acted as a long straw from a brain hole, that had too much fluid, to my stomach lining where large amounts of fluids could be absorbed. Another end source for a shunt is the heart which is called a VA shunt (Ventricular Atrial). When the VP shunt was originally suggested, I was highly relieved. The idea of connecting two of my most significant organs (brain and heart) with a piece of man made tubing seemed a bit out of my safe zone.

I was happy that I didn't feel the described burning sensation when the shunt released extra CSF (brain juice) down my water slide of a catheter. Then 6 days out, a general stomach discomfort began. It felt like I ate one too many Hostess cupcakes. The next few days the stomach status moved from "belly ache" to "possible organ exploding". Nausea was also making things worse. I called the neurosurgeon and left a message. The next morning I am awakened at 8am by a call from Dr. Basta himself. He  neglects to even say hello before he starts blasting question after question at me: Is your stomach incision raised? Is a fluid sack under the incision? Are you vomiting? Do you have a fever? I say no to all questions while I hear him literally pass the phone to his nurse. The RN comes on the phone and tells me to go to Lee's Summit Medical Center to have an x-ray done. I follow up with "what could be wrong?" She said she didn't know, and that is why the x-ray was ordered.

We got the x-ray completed and the nurse called me the next day on Christmas Eve saying Basta could not see anything wrong on the x-ray. However, an x-ray wasn't the best image for possible fluid collection (so, why was an x-ray ordered to begin with?). I needed to have a CT done back at Research. She had also worked me into the schedule so Basta could "lay eyes on me." At this point, I was a bit alarmed; there had to be something wrong to warrant a phone call from the doc himself and an x-ray and CT to be ordered. I downed an anti-nausea pill, called a grandma to watch the kids, and canceled on a friend who was visiting in order to make the trek back to Research. The CT was performed and we headed up to Basta's office. Unfortunately, since we were a schedule add-on, we had to wait almost two hours to see him. Once we were in a patient room I noticed my hands were shaking and my breath quickened; I was nervous to be there on that exam table. Unknowingly, my panic trigger was beginning to morph from my pre-motherhood insomnia to this particular office.

As he opened the door and walked in, he announced that I needed to "clean my pipes out." Was that a medical term? Was the catheter blocked? Did that involve a hospital stay? Why is he smiling? These were all the questions going through my head.  Seeing I was confused, he emphasized "you need to POOP!" My face turned red and I began to incessantly apologize for wasting his time. In some kind of weird way I felt like a failure as a patient because there wasn't anything wrong with me. When we arrived back home, Kyle's mom asked if everything was ok; I looked down and said that I was fine. When she asked for more details, I quietly muttered that I was only constipated.  In Liz Lemon fashion I wanted to yell,  "I worried a bunch of people, had 2 different medical tests done, and made a last minute Christmas Eve neurosurgeon appointment because I couldn't POOP. Yep, I am the idiot. Blerg!"

In fact I hadn't had a BM since the surgery. So while the kids poured milk into a glass for Santa's visit, I was shooting Milk of Magnesia in the other room. Ironically, my stomach pain disappeared after my pipes were cleaned.



#6 - A Bobby Pin in the Scalp

Let's return to the Top Ten of Ridiculousness list with #6.

In addition to missing out on the roller coasters and the Army, I have lost my depth perception and feeling on my scalp. Yes, I know...two very serious impediments ;) First, I virtually have no depth perception. So Monster Inc. 3D will not be a movie I see nor will I be purchasing a 3D TV screen. I don't know if I lost it all at once, or if it was a gradual process. Due to my 2D vision, I have to park my swaggerwagon in one of those far off parking spots old people park in to prevent door dings. The eye doc says that surprisingly many people lack depth perception, so don't mock those who park in the back of the parking lot; we just don't want to scrape your side panel.

The second thing I "lost" was feeling on the right side of my scalp. Walter's stage is completely numb. A numb noggin', no harm in that...right? To a sturdy person there is no harm, but I am not the most graceful soul. After hitting my head in December, I went around for two days not knowing I had a bigger gash further up on my shunt valve. That was two days of not cleaning and treating the wound; that neglect could have ultimately allowed the staph infection to invade.

Also a freak-out moment happened two weeks ago when my incision started bleeding. Bleeding head wounds have moved up to "emergent" in our house, but not nearly scary enough to call the neurosurgeon, who sends me into anxiety. So Kyle went to the pharmacy to buy some UNEXPIRED Neosporin because unknowingly the Neosporin we were using on the infected cut expired in 2009 (possibly another transporter of staph). We applied the new anti-bacterial cream, put some gauze over it, and strategically placed bobby pins to encourage my hair to hold the dressing in place. I couldn't see the situation up there, but Kyle said it looked like the incision had busted open. Did I feel anything, no. The incision busted open a second time, and as I was awkwardly trying to see the incision in the mirror when I saw a bobby pin jammed into my scalp where the incision was open. Eww, eww, gross, gross! I had to pull the bobby pin out of my scalp and immediately sit down because I was dizzy from the thought, but I absolutely didn't feel a thing. Now I am more careful with my Walter Hairdo and watch for open wounds before slipping a bobby pin into my hair. When my less than desirable wound came up today, thanks to Kyle's loud mouth, Basta looked at me while nodding and said, "You are killing me." Then he instructed me to wear my necessary Walter-covering bobby pins further back on my head. I was proud that he understood the need for the bobby pins to cover Walter, but he just wanted them placed in a safer place.



Walter saying Hi on Thanksgiving.

 



I am not wanting to complain and dramatize my very minimal restrictions of the VP shunt. I simply want to show how ridiculous theses situations I get myself in are. Remember I don't want pity, only eye rolls and laughs.

My Neurosurgeon Has ADHD

I went in for a quick check in before Dr. Basta left on vacation for a month. The appointment was similar to the last one we had except I felt like he was our drinking buddy rather than a coffee shop pal. The topics we discussed were:

1. My returning high pressure symptoms. They are mild symptoms now, but he thinks they will progressively get worse. As they get worse, I will get diagnostic/therapeutic lumbar punctures.
2. My head wound was not healing perfectly, then Kyle opened his big mouth about the incision busting open twice.
3. How he fought the female staff to have GQ and Esquire in his patient rooms.
4. The cover of a nearby GQ with a busty woman eating a Bomb Pop on it.
5. The fact he is planning on me ultimately getting another shunt, but he wants my body's symptoms to tell us when that will be. He was a lot LESS optimistic about my IIH condition's remission.
6. Kansas City hospital politics.
7. His son's visit to the NICU five years ago for respiratory distress. I think the son is fine now.
8. The movie Jack Ass. Specifically a scene where an actor poops in a display toilet in a store.
9. A patient he treats that had a skull infection and he had remove a portion of her skull for healing purposes. However, she keeps calling the office wanting her skull back. Just odd...
10. My new curly hair style
11. And the typical question of if I needed anymore painkillers; he is going to make me a drug addict yet. I said no since I hadn't even filled the last script for 75 Percocet.



I have a feeling he doesn't talk to all his patients about these subjects, but after a year and three surgeries he may like us and may feel comfortable to show off his obviously ADHD conversation topics. It really has been just in the past two appointments we have had this friendly banter. His random conversation topics make him much more approachable which is helpful for my jittery self. My panic did slightly emerge at the check out desk, once again, after the situation. I had to let Kyle make my next appointment while I went into the cool hall to feel stable. 

#7-The Chick Who Hyperventilated in Birthing Class

I noticed my posts have consisted mostly of IIH and VP shunt ordeals, but they are not the sole subject I want to highlight. I want to share my experiences with panic also. I want other suffers to read my posts and known they are not alone. Subconsciously, I have avoided panic posts and that might be a sign that I am not as healed as I thought. However writing about it has become a new and effective coping stratagy, so lets go! My panic has only publicly surfaced four times: in the Research ER, before they pulled my shunt, at Steak and Shake, and in a birthing class I attended when I was preggers with Moe. 

This story actually begins at Raytown High School in Mrs. Kudart's Anatomy Class. We had been studying the reproductive system and with signed permission slips, Ms. Kudart showed a VHS tape of a birth. I am still not sure that was the norm in most HS Anatomy classes? Seems like a bit too much for a high schooler to process. I truly didn't think the footage would phase me, but as the baby on the video crowned, my hearing muffled and my vision dimmed. I was going to pass out. I was 17 seeing a human emerge from another human and all the gore that comes with birth. Seriously, I don't think it was unreasonable for me to react by rushing out of class to the cool hall and laying down before I went unconscious. Needless to say, Ms. Kudart let me skip the birth part on my final.

Fast forward 6 years and I was plump with Moe in the education room at Boone Hospital Center. Kyle and I had signed up for an all day birth class to learn how to efficiently get Moe out of  his oven. We were late, therefore; we had the two most front and center seats in the room. All the other on-time parents got to stake out the peripheral seats out of the instructor's eye.

This was in the middle of my first panic period stemming from lack of sleep, so my senses were already very overstimulated, so it was amazing that I was able to get dressed and get to the hospital, but now I was front and center for 8 hours of Birthing 101.

In the beginning I was in my pre-panic comatose state. When the direction of the class moved from greetings to birth anatomy, a lump developed in my throat and I started twitching my leg. Then the instructor started explaining the different types of birth, and a twitter radiated through my body. Tears began rolling as the instructor went for the DVD player. I was obviously in distress, but I had read about how deep breathing could calm the circulatory system, so I was going to fight through this. Breath in 1,2,3...breath out 1,2,3...breath in 1,2,3 and so on. Well, the DVD showed various birthing situations and by the second situation, I was literally hyperventilating from panic in front of the whole class. The instructor asked if I was ok, and I rush out of the classroom. Kyle follows and we walk the hallways for over 30 mins. We debated if we should go back into the class, but as I walk closer to the room my breathing quickened. It was decided that we would skip the rest of the class and go to another one on a different weekend after my nerves had calmed and my Paxil was fully effective. We never got to another class before Moe came, but I had read several books and knew what to expect.

Then and there THAT room became a trigger for my panic. I had three babies at that hospital and could never go back to that specific room. Thank goodness Kyle was always willing to attend the after birth class required by the hospital before they release patient and baby. Kyle went to that class three times with all the hormonal new moms and learned about episiotomy care and breast feeding (a pretty funny image actually). Little irrational triggers are common for Panic Disorders. Hy Vee, Mohawks, and Words with Friends have been other past triggers.

No, it is not normal for a person to avoid Hy Vee or a doctor's office because of panic fear, but that is why I have medicine and coping strategies. With these aids, I become highly functional and stable. The students in that birthing class probably thought I wasn't suitable to take my baby home after hyperventilating from simply watching a birth. However, they didn't know I have a kick-ass support system and a working knowledge of my condition that is always evolving. Furthermore, I believe Moe's parents have done a fine job, so it wasn't fair of them to judge me. I try so hard to remember that as I meet people; I don't know their struggles, so I can't judge. Because I am human, I do fail a lot with judgment.

God, ironically, had Moe flip into the breech position 5 days before my water broke, so a C-section became my birth reality for all three kids. He only gives you what you can handle...right? Maybe I could not have handled a vaginal delivery, but I now know (after years of education) I can handle surgeries and my panic!



#8-What Doctor...I Can't Join the Armed Forces?

Michelle Brunke thank you for being my first and only follower (so far). I tend to be the follower in life, so this is new.  However, one of the few serious aspects of this blog is to stress the importance of being your own leader when it comes to your health. I have learned to ask questions and research, research, research. Reliable sources should be the only ones used though. I learned that the hard way; that story will be a post entitled Mommy, Why is Daddy Taking Your Computer to Work with Him?: Banned from the Internet. Unmonitored group forums unnecessarily caused my hyperactive nerves to go crazy on a number of past occasions.

I posted in Happy 31st Birthday! Enjoy Your New Nonprogrammable Shunt Valve! Part 1 that magnets were a huge no-no for me. With my original brain hardware, any magnetic field could technically alter the amount of fluid my brain rested in. I found that magnets were absolutely the most absurd restriction, and near impossible to avoid as our phones, iPads, speakers, ear phones, and metal detectors contain them. The very smart friend who realized that there are no magnets in magnetic paint posted this to my FB wall.

 

We looked like that robot as we cleared our house of household magnets. My school even cleared my room of magnets. We even contacted our home's previous owner about any magnets he knew of in the house. I am sure he was thinking we had gone mad. In my mind, I can hear the previous owner answering Kyle on the phone, "Ummm no...I am not aware of any magnets that might break your wife's brain, now please lose my phone number." Ironically, this summer I did find a huge magnet in an out-of-sight faucet box under a vanity. I even had a "shunt card" that was suppose to get me out of concert and airport security lines because of the metal detectors. Damn the Shunt Gods! I didn't get to experience that particular opportunity, but I do still have the card. They won't know I changed my brain machine to a different model. Since the new model, I can get back to magnets and continue to buy a one at each vacation spot we drag our kids to. I just wish I had my Mount Rushmore, Omaha, and Branson magnets back.

There are two other situations I have to avoid due to the brain straw I have in my head. The first one is the Armed Forces. Yes, the military will have to wait for another perfect specimen-of-a human to fight the bad guys. I imagine my-solider-self resembling Brad Pitt in Troy, so that sucks for them. Secondly,  you will not see me in line at the Timber Wolf at World's of Fun.  Is that roller coaster still even at WOF? A fellow Zipper Head's (nickname for brain surgery patients) neurosurgeon told her that roller coasters are not good for anyone's body or head, let alone ours. For me, the fear is the strong motion (a very technical physics' term there;) will move my proximal catheter out of the brain's ventricle (brain hole). So no Marines or roller coasters for me, I think I can still live a satisfying life.