The 18th lumbar puncture gone wrong and the calm husband who turned ASSHOLE.

As part of the Neurologist's intense follow-up to my minor migraine inquiry, I was to have a Lumbar Puncture (spinal tap) the day after X-mas. When the first shut was fitted my neurosurgeon look me in the eye and promise the Lumbar Punctures were a thing of the past, and I was to never have one again. This was because they could simply "tap" my shunt and get pressure readings and collect fluid for testing. Wow! that was a relief, but NOT true. Since that empty promise, I have had 3 more LPs. And lately they make this whole vodka-worthy situation worse with the need of a blood patch. In the post #3-If only Edward Cullen were Real... I explain how, the needle prick from the LP sometimes doesn't clot correctly and the spine leaks CSF. The leak leads to brain sagging... I inappropriately picture my back brain lobes resembling old boobies without a push-up bra. Then the droopy lobes cause a mind bashing headache. Now the medical answer for this sagging is disgusting and I often wonder who and how this remedy called a blood patch was discovered. It had to be one of those accidental discoveries that involved a boat-load of alcohol and/or drugs.

I have had 2 blood patches. My first one was explained and executed with sweet care by an anesthesiologist named Dr. Poe at St. Lukes in Lee's Summit. The second patch did not involve a gentleman, but an arrogant short man who resembled Sammy Davis Jr at Lee's Summit Medical Center.

So I dutifully went on December 26th  to my appointment to get my spine pricked again. There was a lot of talk about how they had to use a higher spinal area due to scare tissue from the earlier 17 LPs. I measure out above average at 25ccs. Normal was 14ccs-20ccs. The radiologist drained me down to a 4 ccs, yeah a 4. Seemed like a drastic drainage, and I knew my body would need a blood patch. So, I confirmed with both the ER doc and the attending nurse that if I were to need a blood patch that I could come here to Lee's Summit Medical Center despite it being a weekend. They both said, "Yes." Kyle and I had been down this road and were covering our bases before going home.

We went home and sure enough the Spinal Headache came 48 hours later on a Saturday. Now a spinal headache is the worst of all the types of headaches I have ever had. The pain radiates from an inside core and paralyzes my head with agonizing pain whenever my head moves. It is worse that a high pressure headache or a meningitis headache. So we had to have a battle plan for when this hell came over my head. As we were told we went up to LMC's ER. There, they made feel nice and cozy with some intravenous Dilauded. However, when they came in with a second dose of "heaven" instead of an anesthesiologist to patch my spine we started asking questions like, "When can I get the patch?" and "What is taking so long," The ER doctor only said that they were treating me with the Dilauded and that was the best they could do right now SINCE AN ANESTHESIOLOGIST WASN'T IN THE BUILDING."  I was in so much pain, I really didn't comprehend the fact a blood patch wasn't going to happen. However my mild mannered husband laid into the doctor by asking "We were told to come here to get a patch and now you can't give her a patch?" "How can you run a hospital without a anesthesiologist?" "What do we do now?" "Why can't we call in the anesthesiologist on call?" Kyle, normally being a soft teddy bear became a monstrous Papa Bear demanding answers and action. I kind of liked that rare glimpse into Kyle's dark side.

Ironically after Kyle's tirade  an anesthesiologist was found in an OR and he was inserting a syringe into my spine within 15 minuets.  This whole procedure and the high opening pressure pretty much went unnoticed until I fired my neurologist and got and new nuerologist who has sent me down a whole new path of Nueroptamologist and a possible stent rather than a shunt to treat me.

Today, I had that appointment with the Nuero Interventionist to see if I was a candidate for this less invasive stent. However, my scans did not show up in time for the appointment (this, despite my call to assure the scans would be there),  so Dr. Abraham was not able to apply theory to my specific case. In my Candyland World my shunt could be permanently removed in order to insert a small 2-inch mesh stent in a large vein that is narrowing, which could be causing my brain's inability to drain the spinal fluid.

VS

The stent would then keep my vein open to an appropriate circumference for drainage. The stent would be skull-contained, so rose thrones, counter corners, or bunk beds could not damage it. Dr. Abraham has to see my scans though to see how bad my narrowing is before he can order a semi-invasive test to see where the narrowing is the worst. If I can "pass" both these tests, I would be a candidate for a stent and I could get this efffin' shunt out of my body. However, I also have to be at peace if I am not a candidate for the stent...be at peace with my current plumbing system I have. But good thoughts and prayers never hurt!

A Routine Neurologist Appointment Leading to DEFCON 4 Emergency Tests and the Panic that Ensued!

In December, I felt like I was having headaches more and they became harder to numb, so I figured it was my migraine heritage finally rearing it's ugly head. The headaches did NOT resemble the nauseating pressure headaches that caused my skull to feel like it was going to blow apart. Therefore, I was very confident that all was well in the shunt department. Several generations of women in my family had suffered nasty migraines, and I had mostly avoided the dreaded migraine all my life. I figured my luck had ran out and I was now going to learn how to handle these headaches now.

I shared in the post:

The Chick Who Hyperventilated in Birthing Class that I am crazy (not a fair label, but it makes it feel more light hearted and less serious to me.) and have been diagnosed and have effectively dealt with a panic disorder. This whole Cluster of Crap has added more triggers to this situation.

Despite my panic, I was "flying solo" at this neurologist's appointment. My panic is mostly triggered with any event that has the prefix "Nuero" in it.  So, it was unusual for me to go without my Kyle safety net. As a coping mechanism, Kyle usually escorts me to the majority of "Nuero" appointments because I don't hear the doctor correctly and ,quite frankly, rationally. I can't listen because I am trying so hard to stifle back tears, vomit, or dizziness that accompanies my panic. Sweat attacks embarrass me and I am constantly excusing myself to urinate because my body is on hyper drive. However, this appointment didn't phase me because I was just asking for a migraine medicine and that was it.

Now when I first had my shunt fitted, the neurosurgeon said that all other doctors will automatically freak out and jump to the diagnosis of a shunt malfunction. However, I figured my neurologist would be intelligent enough not to automatically jump to the shunt. After I explained textbook migraine symptoms and shared my family history, she surprised me and immediately said she thought it was a shunt malfunction. Yep...sweat waterfalls hit, vomit burnt my throat, words got lost, and my mind started to spin. "Wait, can we try a migraine med before we jump to the shunt?" Nope, she just was set on her assessment and ordered (1) A head CT (2) Blood work (3) An eye exam (4) A Neuropsychological exam and (5) My 18th lumbar puncture (spinal tap). So much for just getting my piece of paper with a migraine med scribbled on it. I was trying so hard to keep it together, I forgot to check out and the receptionist had to chase me down the hall to get my co pay. Then I sat in the van on the phone the with Kyle trying to calm down enough to drive home. I guess he should of come anyway.

I spoke of my Neuropsychological Exam in the post called:

Short Term Memory Loss and A Bedazzled Belt Clip and I will talk about the lumbar puncture later in a post called: The 18th lumbar puncture gone wrong and the calm husband who turned ASSHOLE on an ER doctor. Yet my head CT is the most real example of how my panic sets in during the most routine and safe situations.

Specifically my triggers are Research Medical Center, my neurosurgeon and anything to with his office, any headache that lasts more than 3 days, and going days w/o sleep . On December 23rd, I had to enter one of these triggers head on. I had to get a routine head CT there at that scary RMC. Kyle made sure to be with me this time. To prepare, I downed a Xanax (my crazy pill, I call it) at home before leaving. Now, the smell, the décor, even the employees' scrubs can send me into a panic tail spin so much so that I am sure I resemble a solider dealing with PTSD. Except soldiers deal with true trauma, death, and tragedy and I am just walking down to RMC's radiology's waiting room. Can we say weak willed? As I wait in the radiology waiting room with Xanax in my system, my body wants to rock back and forth; Kyle tries to stop my motion, but realizes that is futile and stops. My eyes can't focus and I can't complete sentences with Kyle's distracting conversation. The deep breathing I try is really just dramatic shallow breathing and I want to scream LETS GET THIS DONE SO I CAN LEAVE! Obliviously, the Xanax was not working, so I take another one. However with the swig of water going down, vomit meets it as it is coming up and I scurry to the restroom to lose my lunch. My body is fighting so hard not burst out into hysterics...it is exhausting! Finally they called my name and the poor tech who takes my somber shell back gets no laughs for his witty jokes and one word answers to his questions. He quickly gives up communicating with me and just gets the CT done as quickly as possible.



The irony is that after 1) A head CT (2) Blood work (3) an eye exam (4) A Neuropsychological Exam and (5)A Lumbar Puncture we found out that I do have migraines that respond perfectly to a common migraine medicine called Topamax and that I have some short term memory loss. All the tests and anxiety to prove that I, the patient, knew my own body. I am sure may struggle with panic, anxiety, or depression and/or have been correct about your body despite others' opinions. All we can do is keep moving forward while advocating for our own health!

Thorns In The Head

This story does not have me saving my head similar to a superhero zombie like the previous post. Instead, I am more of an oaf left standing dumbfounded with thorns in my head.

 

This past Fall, I had enthusiastically accepted a long term sub job in 6th grade at Moe and Franki's school. It was extremely refreshing to be back in the classroom creating lesson plans and making what we called " big girl checks." Being out-of-practice to the whole full-time working mom gig (props to those full-time working moms who balance everything), the house resembled a battle zone with dishes unwashed, toys strung about, and landscaping unkempt. We had leaves in flower beds, crispy dead perennials that needed to be dead headed and a few ugly, scary rose bushes that had grown out of control. One rose bush in particular had thorns on the base that were the size of a guitar pic. Spoiler alert: I would end up fighting this exact rose bush.

 

Thinking I needed to get as much Fall clean up as possible done in a quick Sunday afternoon, I got my nippers, rakes, and yard waste bags. The weather was nice; however, the wind was gusting at 30 mph. I had this one afternoon and wind was not going to slow me down so I started digging those crispy dead annuals out of their pots. Next I put on heavy duty gardening gloves and got my large nipper to tackle our rebellious and unruly rose bushes. I went head first (this will be even funnier in a second) into the base of the biggest rose bush, the one with the guitar pic sized thorns, and started grooming. The wind made it hard to keep my balance, but damn it I was going to at least get the outside of the house looking neat again (even though the inside was a disheveled disaster). Well the wind won, and dropped me head first into the rose bush.







 

Once again I was laying on the ground wondering what had I done to myself. With gardening nippers in one hand and thorny rush bush vines in the other, I didn't have a chance to protect my head this time. After all, nippers to the head is generally frowned upon whether you've had brain surgery or not. After pulling myself out of the bush, I felt a warm trickle  of blood running down my face.
 

Leaving my pile of weeds on the ground I race inside to survey the damage. I am bleeding from my head, and the punctures are around the shunt site. I also see that there are some thorns embedded in my scalp. I yell some obscenities and throw the bloody wash cloth on the ground because I am embarrassed to show Kyle I am also having flashbacks of how a small cut turned into bacterial meningitis and two more surgeries last fall. I need him to pull the thorns out, so with sheepish eyes I approach him and explain what happened. The look on his face said, "How in the hell did a rose bush kick your ass?"
 

Tweezers in sanitized hand, Kyle pulls out at least 3 thorns from my scalp. Then I apply an antibacterial cream every hour completely paranoid of infection. I walked around for two weeks with a permanent greasy spot from my compulsive application of Neosporin. However, after pulling 3 thorns, I still felt like there was still something in my scalp. Sure enough the next morning a 4th thorn came to the surface. It was completely submerged; Kyle couldn't even see it.

The first three thorns Kyle pulled out of my head.



Paranoia also made me call the neurosurgeon-on-call at Research Medical Center on a Sunday afternoon with my issue. He was polite enough, but I am sure that surgeon was thinking "What a quack!" We also called my neurosurgeon on Monday wanting an emergency appointment. All I could think of was last December, and I wanted to do EVERYTHING possible to prevent an infection, hence my perpetual greasy Neosporin spot and the rubbing alcohol on my vanity. Well, my neurosurgeon did not see my situational urgency and refused an appointment.  Its not like he wasn't busy ;) Everything turned out fine and everything healed, but it did start the thought process of if I was the best candidate for a shunt with all my klutzy tendencies. It also made Kyle seriously consider buying me a helmet. But a helmet with a wig so I could still look awesome, of course.

 

 

 

 

The Oak Tree Farm Zombie: How a nighttime jog led to a fractured collarbone. BUT I SAVED THE HEAD!

Seems appropriate that I create this post as I have been convinced to do a 1/2 marathon in late September in Columbia, MO at the Roots and Blues Festival. Now in my pre-kid days I jogged four different half marathons and even managed to complete the 2003 Chicago Marathon. I was never fast, but had perseverance to not stop until the race was over. Also,the running brought a lot of confidence and pride that aided in guiding me from a college student to an adult with a real teaching job. Unfortunately, as kiddos were born and then the surgeries started up, running became a very, very non-realistic goal. Along with the running a good amount of the confidence and pride became obsolete in my life.


Kyle and I after The 2003 Marathon





So last summer I thought, "what the hell, lets start running again." It would be a "safe" exercise. Unlike Crossfit or yoga, there was nothing being lifted overhead or balancing acts that could lead to injury. It was simple running . . . putting one foot in front of the other. Now, I had aged 9 years and my knees slowed my pace considerably. Also, I started out at mile 1. I really thought I could start with a 3 mile run, but that thought was seriously halted when I went out and nearly collapsed of respiratory failure after a 1/2 mile.

As the weeks went on I did manage to get to three miles. Now I hope you are not picturing me effortlessly gliding down the sidewalk with a smile on face and my long stride moving me forward like one of those crazy Kenyans that run marathons in under 3 hours. You need to picture a short, "fluffy" mom who is struggling to make every stride. She is completely red in the face and quite frankly is running slower than a normal person could walk. Actually if I saw myself running on Todd George Road, I would stop and offer myself a ride just to put the "running me" out of my misery. But I was doing it and some of my old confidence was creeping back (along with two weeks of debilitating leg soreness that kept me from making several treks up and down my stairs). I was back and feeling accomplished.

One day was too busy to run in the daylight, so I thought I would go at night. After fighting with Kyle on whether or not I should take my phone, I took off without any fancy gadgets that new runners like. When I run I don't wear my glasses and when I don't wear my glass my eye doctor claims I am "night blind." I am a bit skeptical of that term, so I never invested in contacts or sports glasses. So I take out on this humid night to trudge 3 miles. I had to deviate from my normal route a bit this night due to a lack of lighting. Though we love in a safe neighborhood, I still imagined an attacker jumping out at me. He/She would have been disappointed to find just me, no gadget mom, but to be safe I took another route.

As I was getting closer to a familiar part of my route something simply tripped me. Not sure if it was the side walk, a branch, or more likely my own feet. I began to fall forward but managed to correct myself. I overcompensated a bit, and the whole left side of my body crashed into the pavement. I skidded along the pavement just enough to skin several parts of my body. Luckily I had managed to use my left arm and protect my head as I did not want another trauma to my new shunt. I did hit my head; just no where near the effin' shunt.

I laid there wondering if this whole body blow out had seriously injured me. Was the shunt hurt?Should I move? Where should I go? My friend's house was a block away and my home was a mile away. After air came back into my stomach, I quickly and embarrassingly got up and immediately started to speed walk home. I, however, heard voices across the street; two people had seen the whole thing and said nothing. No "Are you ok?" or "Can we take you home?" or "Need a beer?"  As I was walking home I kept my hand down, but a few other night walkers were randomly giving me this stare like they had seen a zombie. I would give them a grin and they would ask if I was ok. How did they know I just fell doing the simplest exercise of mankind. After I said yes, they would quickly walk away from me acting like I was going to eat their intestines. After two encounters, I looked down and noticed that both legs were intensely bleeding and my elbow was a causality too. I was so worried about my head I didn't even evaluate the rest of my body. The scared walkers had all cause to be weary because I did look like I had slaughtered someone. BUT...BUT...despite their fear they had manners enough to ask if I was ok, unlike the schmucks who said nothing at the scene of the incident. I made it home, and all I could say to Kyle is "I SAVED MY HEAD!"

The next three days my whole left side hurt especially my head, neck, and shoulder area. A wretched headache plagued me, so I went to the doctor and we just chalked it up to soreness from the fall. On the fourth day the pain became a bit more localized in my collarbone, but I kept on doing life. I did mange to get in with my chiropractor. When I told her the story and begged for a impeccable adjustment, she looked at my collarbone and said she wasn't doing anything until I got it X-rayed. I had always pictured broken collarbones as unbearably painful injuries that took one to the ER immediately, not a nagging pain that didn't prevent me from living life. The chiropractor said people walk around with fractured bones all the time and don't know it.

Needless to say the collar bone had a greenstick fracture in it. When I fell my collarbone bowed out making little bone splinters, like when you try to break a green stem. Since it was only a fracture, all she could do was tape me up and use some laser gadget to reduce the swelling. She taped me everyday because Kyle and I had a 2-day music festival camping trip where we would be sleeping on a tent floor. Between the tape and the Hydrocodone I did just fine on the trip. However, I learned in a moment of distress: ALWAYS PROTECT THE SHUNT! Regardless of what else could happen to the body, the shunt is to be protected at all costs. I retired from running after that, but I am back at it. Please no pity if you see me struggling on Langsford Road. I may look like I am going to die, but that is just my normal running face. But if you see a bloody suburban zombie bite it on the sidewalk in front of your house, at least offer some sort of acknowledgement. Even if it is just a chuckle and a "Smooth move, Exlax!"

Notice the spider taping job to stay comfortable while camping.





 



Pickin' It Back Up

Well I havn't really been keeping up with the heaping health mishaps of the past 9 months. I guess partly due to the fact nothing too serious has happened, and mostly to due to the fact I can't find my usual humor in what has happened. And since humor has been a big coping device AND literary device, I felt I needed to wait until some laughs could come this cluster of crap that is my brain.

Since getting a 2nd VP shunt put in a year ago, I have done some pretty awesome things like (1) took our first family road trip to Ohio to visit out dear friends the Ryans (2) Kyle and I pretended we were young enough to handle the music festival culture and drove to Gutherie, Oklahoma with friends to camp and see Mumford and Sons. Being in our mid thirties it took three or four days to recover from that two camping trip. (3) I dove back into the classroom with a 6 week, 6th grade long term sub position. It felt great to have "my" own class again, but the experience highlighted the short-term memory loss I had suffered and I hadn't known it.(4) We were able to take the whole family to San  Antonio Texas which was going Moe, Franki, and Henry's first plane trip and SeaWorld trip. Taking my animal-loving kids to SeaWorld will be a highlight of not only this year, but the entirety of my motherhood, lots of "ooos" and "awwws."

However, keeping with my health and klutzy past, I was going through a battery of doctors, specialists, and tests to still figure out a source of the headaches I was still having, some headaches lasting up to 7 days. In a good ol' fashion method, a Top Ten organization seems to be the best way to present my newest mishaps that include:

1. The Oak Tree Farm Zombie: How a nighttime jog led to a fractured collarbone and a bloody face and leg. BUT I SAVED THE HEAD!
2. A Fall rose bush dead heading session led to thorns in my scalp.
3. Forgetting my kids at school: a ditty about unknown short term memory loss.
4. A routine neurologist appointment about a migraines leading to DEFCON 4 emergency tests and procedures and the panic that ensued!
5. The 18th lumbar puncture gone wrong and the calm husband who turned ASSHOLE on an ER doctor.
6. Firing a neurologist. As a patient you can do that...so  liberating!
7. The cabinet door/bunk bed combo can be another enemy for one's head.
8. A trip to a Nuero Ophthalmologist-How my diagnosis could possibly change for the 3rd time.
9. An ice pick to the head: The accusation that I am compromising my shunt on purpose (still trying to find humor in this one).
10. A decision to make: keep the VP Shunt and ask for it out? 

A Fan Letter to Andy Cohen

Nope, I have never ever sent a fan letter to anyone; not even my teenage musical love Boyz II Men. Today I did it! However, it wasn't to a singer, actor, or sports image. It was to the affable BRAVO TV executive Andy Cohen, who I have NOTHING in common with except being from Missouri. However he absolutely cracks my shit up with his memoir Most Talkative and his nightly show Watch What Happens Live. Where I literally just watched him try to pair up the NKOTB member to a crouch shot in an On Air game. Most importantly, he is the creator of the very prestigious TV series The Real Housewives of ---------. Andy's smile reminds life is just too short not to laugh and have fun with your surroundings. So here is my first attempt at written adoration (now I do realize he may never get my email or letter):



Andy,

 

I wanted to say thank you for your candor and humor on air and mostly in your book. This Kansas City mom has had a series of unfortunate events the past 3 years. 2 bouts of meningitis, 4 brain surgeries, and a slew of hospital visits have kept me from trolling Target and texting in the school pick-line with other "at home" moms. However, I have been able to adopt a Cohensque comical and sometimes inappropriate view of the whole ordeal. My funny and crass rose-colored glasses were influenced by Most Talkative and how you handled your own life struggles, which have zero relationship to my Catholic, vanilla, and Midwestern problems. You dealt with your sexuality; I dealt with a colorful neurosurgeon who I believe has severe ADHD. You dealt with prejudice; I dealt with shunts (yeah...inappropriate word huh?) You dealt with a Jew fro; I dealt with an unruly patch of shaved hair I named Walter. My odd story propelled me to create an immaturely prepared blog where I could share my improper thoughts (http://clusterofcrap.blogspot.com). And this outlet has been my biggest deterrent from depression; I can't afford a new face like Vicki. Thank you for being transparent and yourself and letting the world love you for who you are! I have gleaned so much from your public narrative!

 

Now I know you said there will never be a RHoSTL(or KC) because Midwestern women are not cray-cray like those in OC or ATL. However, if you want a wholesome Missourian to be a bartender in the clubhouse one night, I will happily ditch my addiction to Old Navy clothes and go get a fancy dress at Macy's ;)

 

Thanks,

April Farmer

9 Day Check Up

Since there is really no cohesive writing format to describe my visits to Dr. Basta's office, I will use the trusted Top Ten approach:

1. During surgery, he puts my head in a three-pronged vice grip. This vice grip puts 60 pounds of pressure on a patient's head (from three angles). Medicine is given to an already unconscious patient to minimize blood pressure spikes when those three prongs CLAMP the head. "Thank God you are under anesthesia" Basta reassured me after saying he wouldn't ever want his head in this contraption.

2. I had over 25 staples plucked from my head, neck, chest, and stomach. Dr. Basta made his nurse do this sadistic task as we heard him laughing in the next exam room. While Lisa was plucking me like a dead chicken, she noted that I had completely ripped two staples out of my scalp and two other staples were only half way in. I then had to fess up to a fight I had with an over-the-head hoodie. I guess the hoodie won. Remember I am numb on my scalp, so I don't feel those mishaps. Now, my tummy staples are a different story, and ironically they stayed neatly intact =)

3. He uses a GPS system to find my ventricle (brain hole) to put the proximal end of the catheter in. I had white radioactive stickers put on my head, then they sent me into a CT Scan. The CT Scan and stickers created a GPS reading for Basta to know where to drill my skull hole. Fascinating...huh?

If you look above my right eye, you can see a scabbed over "hole" from the vice grip.



4. Apparently the Kansas City Public Schools are ranked dead last in a supposed all country ranking poll. When furthered questioned, Basta couldn't recall his source. The district is bad, but it is hard to believe they are the WORST district in all of the US.

5. At his kids' preschool they auction off the closest parking spot. This year it went for $2700. Yep, he lives in Mission Hills, KS.

6. I am healing very well, but still have to take it easy for 8 more weeks. Apparently I am not supposed to be lifting anything heavier than a gallon of milk. It would have been more helpful to tell me that right after surgery. So neither Henry nor an overstuffed footstool get to be carried anymore.

7. I need to get a visual field test done at the eye doctor to see if my peripheral vision is improving. It improved with the last shunt, so the prediction is that is will improve with this one.

8. Lisa, his nurse, has had 11 surgeries on her ear. I immediately stopped complaining about my 4 surgeries.

9. My overall diagnosis has changed. It was once IIH (Idiopathic Intercrainal Hypertension) and now it is Acquired Hydrocephalus. I acquired it from my first bout of viral meningitis almost three years ago. I was told this was actually a good switch for my medical future because other doctors know about  Hydrocephalus and how to treat it, unlike IIH.

10. I was always scared that I was "that patient." You know, that hypochondriac patient that calls ALL THE TIME. Nope, I was reassured that when we call, Lisa knows there is something legit going on. I kinda feel proud of that because that means I can read what my body is saying and get help when it needs it. They have patients that call because the patient is lonely and just wants to talk. One patient apparently called and said her husband was beating her. So believe it or not I am a low drama case. 


Overall I am doing very well. I have a virus or something right now, but I am sure that will be short lived. Once again we appreciate all the comments, visits, and prayers. And the food! My goodness the food. We have been blessed with friends, neighbors, and family who keep our bellies very full with healthy food. For the first time in weeks, my kids ate a Happy Meal Saturday as a simple reward for good behavior, not because their parents were too worn out to cook. Thank you so much!

Your Effin' Bladder

Everything in the surgery went as expected. This was my first morning surgery, and I may only schedule morning surgeries from now on. Pre-op nurses are more chipper, you don't have to starve all day, and you go "under" near the scheduled surgery time. I spent 4 hours in recovery where I listened in on a lot of other patient's stories. The pain killer they give me right out of surgery takes the pain away, but does not let me sleep like most people. The gal next me had a hip replaced and was hallucinating on her painkillers. She kept calling our female nurse Ted. That's the kind of pain killer I want!!!!

And I am not sure, but I think the gentleman across the aisle was knocking on death's door. He left Recovery to go back into surgery...maybe? It's not as if I could really see these people, so I had to infer a lot. For some reason, I inferred death. Morbid much?

My post op nurse was very diligent, but not too talkative, so I asked if Kyle could come back and entertain me. Nope! Recovery was too crowded (and full of inferred death) to have extra patrons around (one draw back of a normally timed surgery).

I even got back to my room before dark, so I chit chatted with my parents for a bit. I had insisted that Kyle not spend the night with me, but luckily he didn't listen and ordered a cot for the room. Needless to say, we knew the routine at Research Medical Center since this was my 4th surgery in 15 months. I even fell asleep for the presumable night by 10pm. We were tucked all in and then my bladder started screaming.

Kyle dutifully helped me sit up (which was challenging being I had a head, neck, chest, and stomach incision) and roll my IV into the bathroom. Nothing came out. So we wheeled back to the bed. 5 minuets later came, I could not take it any longer and had to try again. Kyle, again with a smile on his face, rolled me to the bathroom. Nothing! This was our pattern every 10-20 min throughout the ENTIRE night. Yes, the ENTIRE night. The only difference was Kyle's smile transitioned into a grin, then to smirk, then a frown, and finally a "you have got to be kidding me" scowl. I am not sure how he didn't just say "NO, April...you can't pee...deal with it."

Around 6 am, I finally asked Estella, my very efficient Jamaican nurse, if there was something wrong with me. She retrieved a machine (a Doppler...I think) that was able to measure the amount of liquid in my bladder. Who knew such a machine existed? My instincts were right, it was full. I guess with the previously removed catheter and general anesthesia, things slow down in the pee area. I finally had some success later that morning, but poor Kyle was too tired to celebrate with me. His loyalty was solidified that night with all the fruitless trips to the bathroom. Of course, that's what he gets for waking me up with his snoring for the last 9 years. Payback is a bitch, Farmer!



The Cleaning Monster

It has been a little over 2 weeks since I got a call on a Thursday saying my new VP shunt would be placed in three days on the following Monday. With my last placement, I had about 4 weeks to plan, but this time...3 days. When his nurse called and said Monday I giggled and asked her "you mean in 3 days?" She earnestly said yes. Two reasons why the plumbing had to be installed quickly (1) damage to my peripheral vision was already happening and (2) I needed to be completely healed in time for the kids to be out of school. He said I needed 8 full weeks to heal, so time was running out.

From that call on I was possessed with the nesting monster that often occurs in late stage pregnancy. And Kyle was completely helpless against this cleaning bitch; he was to do whatever the bitch said and God forbid he try to sit down to rest. Meals were prepared, "sub plans" for the kids were made, and Henry's early birthday and scrapbook were completed.

The mad-person cleaning is what bothered Kyle the most. He thought I should be resting, but I reassured him that I would have plenty of time to rest. I carried a plastic bucket supplied with Oxy Clean, Pledge, Windex, Scrubbing Bubbles, and rags. I scoured showers, floorboards, windows, counters, cabinets, absolutely everything. Kyle did not know how to handle this because I had never cleaned like this before (except in a freak moment three hours before my water broke with Moe). However he sensed that if he made me stopped, I would be flooded with overwhelming thoughts and my anxiety would get the best of me. All he could do was count down the days until I was immobilized and live with the smell of bleach pouring out of the bathrooms.

 

 

In my warped mind I was thinking EVERYTHING had to be perfect for the grandparents to take over the household even though they didn't need the floorboards sparkling. But the crazy cleaning kept me from losing my mind. Oh yeah, all three kids managed to get sick in those three days too, so stress was high. From my last placement I was expecting to be in the hospital for 4 days, missing Henry's real birthday, Franki and Moe's Grandparent's Day, Mystery Reader, and all the other activities that happen in a week. This house was going to be clean, and I wasn't going to let the fact that my nostrils were suffering chemical burn from the cleaning supplies stand in my way!

Walter Is Getting a Little Sister

It has been three months since we extracted a plumbing system from my infected brain. Since then Walter has sprouted from his shaving, my incision has healed, and my CSF flows uninfected. However,  my brain DID NOT teach itself how to properly drain itself. After an extensive eye exam and another lumbar puncture it is apparent my intercrainal pressure is high again. In a predictable world the brain did not disappoint.

Walter peeking out. He is under control now.

Up to this point I had a few MAJOR headaches, and I was able to knock myself out with the wonders of Oxycodeine and Zofran (an anti nausea drug). This cocktail has always done me well and I keep Kyle extremely aware of my Oxy usage as I could easily become addicted to the euphoria it offers; please no judgment here. Also a familiar whooshing sound had reappeared in my ear. This symptom doesn't really bother me until I am ready to lay down and go to sleep. Then this whooshing I had been ignoring all day sounds like I am in the middle of a tidal wave. And there really isn't any way to rid my ear of the loud splashing sound but to turn on the TV and focus on a dumb sitcom like 30 Rock or Parks and Rec. So yes, I have to have the TV on to sleep and I know "they" say that isn't good for your sleep patterns. So with the help of a class II narcotic and bad sleep habits, I was makin' it! I managed to start substitute teaching, attend and stay awake for a 24 hour Oscars movie marathon, and dance so vivaciously at a wedding that I was unable to walk down stairs the next   day.                                                                                      

 

 My possible drug-induced euphoria was cracked Tuesday when I went to an appointment with my colorful neurosurgeon to look through some results and discuss the next step. I had to drive to Research Medical Center because I would vomit if I hadn't (motion sickness: another sure sign that something is not right up there). Dr. Basta quickly caught us in the waiting room before my appointment to ask if I was feeling "crappy" yet. He asked in kind of an ironic tone, but he was jolly. I knew he hadn't looked at my eye exam or LP results yet because when he came into the exam room, he seriously asked to look at my most recent incision. There was no talk of provocative magazine covers or kids' preschool dramas. I unleashed Walter and he quickly glanced at the incision and immediately said "I don't feel comfortable going in on the right side." At that point I can't remember if Kyle or I said "So does that mean another shunt?" Probably the rest of the appointment reads like a sitcom script:

BASTA

I can't make you do anything you don't want to do. I can just suggest treatments. 

BEFUDDLED PATIENT

Well I want to do what is best for my health and my eyesight.

BASTA

I can't guarantee that your headaches and eyesight will stabilize. We know that your optic nerve is swollen and you have two blind spots AND most importantly that the shunt gave you a lot of relief last year.

BEFUDDLED PATIENT'S HUSBAND

Umm...ok. Why the left side? So she would have to shave her OTHER side? [awkward pause as he ponders the fate of his wife's dueling hair patches] Now, I don't have a medical degree, but why wouldn't we just go into the already messed up side?

 

BASTA

[Leaning on a side table and trying to not giggle at the BEFUDDLED PATIENT'S HUSBAND'S awkward pause] We don't want to put a completely foreign object with no immune system back into the area that has previously been infected. If there is any left over bacteria, we would be giving it a missile to grow and then spread to the stomach.

BEFUDDLED PATIENT'S HUSBAND

[Still perplexed and scared of TWO Walters poking out of his wife's head] But we have clean CSF results. Isn't that enough proof?

 

BASTA

[Making sure to direct his attention to BOTH the BEFUDDLED PATIENT AND HYSTERICAL HUSBAND] Nothing is certain in medicine, and there could still be Staph left in her scalp, skull, or ventricles on the right side. However, left side is clear. We don't want to start all over again...right?

 

BEFUDDLED PATIENT

[Loudly with furrowed eyebrows] Oh hell no!

 

BEFUDDLED PATIENT'S HUSBAND

No, I guess not.

 

BASTA

Hey, we are lucky you have recovered so well and are alive. [BEFUDDLED PATIENT has a "What The Hell" look on her face as she feels that BASTA is being a bit dramatic] So if we decide on a shunt, the left side is the best bet. [Something clicks in BASTA'S brain. He looks at HYSTERICAL HUSBAND'S Mizzou Jacket] You going to Nashville?

 

BEFUDDLED PATIENT'S HUSBAND

Huh? To have the surgery? [pause, looking at BASTA'S eye line] Oh, you mean am I going to SEC Tournament? No, not this year. Maybe when we get good.

 

BASTA

Yeah it is a shame it isn't happening in KC. That was nice. Me and my buddies would go to The Cashew and drink then go get tickets from the street scalpers.

 

BEFUDDLED PATIENT

Sooooo....when will we do this surgery?

 

BASTA

By the end of the month [neglecting to give BEFUDDLED PATIENT eye contact]. Where do they have the SEC tournament?

 

BEFUDDLED PATIENT'S HUSBAND

Oklahoma City.[He has realized the conversation has veered off course] Oh, wow! That early for the surgery?

 

BASTA

Yeah! We wouldn't want anything to get worse and you want to be better in time for school to be out. She would need all of April and May to recover.[Directing all attention to BEFUDDLED PATIENT'S HUSBAND]. You know Oklahoma is a lot like Kansas City. You wouldn't chose to live there.  

 

BEFUDDLED PATIENT

[With a scorned woman voice] But you ARE NOT moving right?

 

BASTA

[Looking at BEFUDDLED PATIENT] No.

 

BEFUDDLED PATIENT

OK, because your name is written all over my head. I am sorry, but...

 

BASTA

Don't appologize. I am your advocate. Things like hitting your head happen. It is just the cards you were dealt. You know this reminds me of when we bought a pair of $90 shoes for my infant daughter and they got lost. [BEFUDDLED PATIENT sees the conversation taking another detour but hunkers down and listens to how her brain is like a pair of overpriced shoes only a nuerosurgeon would buy his baby daughter]. I can remember it; my mother-in-law was in town and all of us came home from the grocery store to find that Addie didn't have one of her shoes. And one shoe is pretty useless...right? I became mad and huffy about the fact we even bought $90 shoes, but then we didn't need to be losing them also. During my tantrum [giggle] my mother-in-law taps me on the shoulder and says [giggle] "This isn't going to be the first pair of shoes you lose." Right then I got it...shit happens!  

 

BEFUDDLED PATIENT

[Smiling] True, yeah...true! Totally! [a bit confused if the shoes represent the shunt or her brain or just life in general] So do you predict anything happening to this shunt?

 

BASTA

Medicine is not an exact science, so yes there is a chance; but small.

 

BEFUDDLED PATIENT

 Let me put it differently. I, an adult, have had both a malfunction and infection in the first year of having my first shunt? Will this string of unfortunate events likely happen again?

 

BASTA

I can't for certainty say yes or no. I have put many shunts in and then never see the patients again. Now some move away, but it is unlikely HUNDREDS of them moved away, so I am assuming their shunts worked well. If you have another malfunction we will go from there, but I would think positive and stop hitting your head [he snickers]. Also an infection doesn't just pop up one day. Either there is an systemic infection or trauma to the shunt and a good majority of patients avoid both.

 

BEFUDDLED PATIENT

Ok, lets do it! However, can we negotiate the night in ICU?

 

BASTA

[Looking as if this was NOT a common request] We can keep you in recovery until you are ready to be released to the 6th floor.

 

BEFUDDLED PATIENT

[Feeling as if she won a tiny battle] Deal!

  

I have painted Dr. Basta to be a complete ding bat who most likely has ADHD and can't stick to the point in a conversation. However, my Cluster of Crap would be a lot more boring without his social flaws and inappropriate side stories. Furthermore, I honesty I trust him to be my brain's plumber again. My anxiety was in check the whole time and I am proud to say that for the first time I didn't feel dizzy (or actually pass out) leaving his office. Maybe that is a sign that I am totally at peace with my pending surgery and the ACTUAL end is in sight.

 



  

So Walter will have a baby sister named Meg in honor of some new and kind friends who have two cats named Walter and yes, you named it, Meg. She will arrive on Monday.

#1-Finding Peace in a Swollen Optic Nerve

There has been a lull in blogging because I was nervous about finding a GREAT and FANTASTIC story for #1 on my Top Ten of Ridiculousness. But then I remembered that David Letterman's Top Ten always has a sub par #1. My #1 is absurd because it involves my thought process and no other adjective describes my thinking better than ridiculous

I have been in a "wait and see" mode for the past month. Wait for an undetermined amount of time and see if the blinding headache, tunnel vision, and whooshing sound in my ears to return. Then when those symptoms come, I get to call for a dreaded lumbar puncture order to measure my opening pressure. Needless to say this game is not nearly as fun as the birth waiting game; where you get to spend nine months eating all the donuts and fried pickles you want and then a baby comes. The result of the current waiting game is a plumbing apparatus in my brain, not a cuddly baby. Patience has never been a virtue of mine. I desperately wanted to wait and learn the gender of all three babies at birth. However, with each baby I buckled at the infamous 18 week sonogram. My lack of patience has made my panic worse many many times. I am sure most medical professionals tag me as a pushy lunatic when I continue to hound them for time lines on treatments or illness durations.

I went to go pick up some medical records from my eye doctor Tuesday and he asked how things were going, so I went into my pitiful diatribe about waiting. He had a few moments, so he suggested he take a look at my optic nerve. A swollen optic nerve had been a hallmark for my pressure being high. It was like he could tell I wanted to know something concrete about the brain situation. He took a fancy-eye-doctor- flashlight and flashed it into my naturally dilated eyes to get a glimpse of the back of my eyeball. The margins of my left optic nerve were "undefined" meaning it had begun to swell again. Hallelujah! A world of relief lifted off my shoulders.

 

Now you are probably questioning why I was so relieved...huh? Here is where my ridiculous thinking comes into play. I had been having minimal symptoms (1) headaches (2) mild nausea (3) ringing in my ear (4) unreliable vision (5) stiff neck. In fact many IIH sufferers endure these symptoms for years before a diagnosis is made. In my heart I knew the pressure was rising, so I knew that the condition was back. However these five symptoms are not acute enough to warrant a new VP shunt to be placed. Leaving me to wonder if I was making up the symptoms and leaving me with no treatment and the possibility of never feeling healthy again. Furthermore no treatment was like getting lost in a black hole. This stung for me especially when I had a treatment (VP shunt) that was working beautifully not two months ago. So when the concrete Papilledema (swelling of the optic nerve) was seen, I became confident that I would get treatment because in the medical world Papilledema was acute enough to act on. I would NOT be lost in the black hole that many sufferers fall into and never escape. I would feel normal sooner or later.

So I am a bit bummed the condition did not go into remission (I was not hedging my bets that it would go into remission), but I am relieved I have acute enough symptoms to get treatment. Ridiculous...right? I never claimed I was a logical thinker. I will have an official eye exam March 6th and meet with Dr. Basts March 12th. Until then, I will have a lot more patience because of my backwards thought process and my eye doctor's ability to act.

     

#2- This is a Ridiculous Amount of Food

This is a HUGE THANK YOU note to all who took care of me and my family with food! I just want to state that so the gratitude does not get muddled in any sarcasm. 

Being a new resident of Lee's Summit, I was introduced to this amazing suburban ritual called a Meal Train.  We had three kids in Columbia and with every kid, one or two meals were dropped off at our house as a get well gesture. We were very appreciative of the meal and felt lucky to have it. However, the Lee's Summit community's idea of get well food puts Columbia's to shame.

Two weeks before my original shunt fitting, a mom contacted me through my preschool about setting up a Meal Train for us after my surgery. Before responding to her generous e-mail, I have to admit I typed "Meal Train" into the Google search box to educate my dumb mind on what it exactly entailed. This is what Wikipedia, the bible of quick and mildly reliable information, told me: meal trains are commonly organized after significant life events, including birth, death, illness, surgery, or new job. Caring friends, family, co-workers, congregation members, neighbors, and communities show their excitement or compassion though the organized delivery of meals.

After my research, I was hesitant to take her up on her offer because it seemed too generous for me, a Lee's Summit newbie. No was not an acceptable answer to the generous tsunami of edibles that was about to crash into our house. We were about to be baptized into the community with 10 extra pounds and Type II diabetes.

For two weeks last December (after my shunt fitting) a new hot dinner would show up at our doorstep, and then again this December. These families (I say families because there was a dad who made a wonderful roast chicken and potatoes) brought salads, main dishes, sides, breakfasts and, desserts. I remember my mom coming up to visit on my 3rd day in the hospital and saying "You guys won't starve because you have a lot of food in your house."

As Kyle had the opportunity to try other's cooking he was reminded that I do not cook fantastically. Our typical weekly menus are created by the most simple recipes that require the least amount of pots/pans. So Buffey's Chicken and Noodles with homemade noodles really tasted comforting to his pallet. Or Kate's breakfast burritos were more satisfying than his normal morning bowl of Cheerios and a Mt. Dew. He devoured Gretchen's heaping batch of potato soup; he managed to find the large pasta bowls for those soup servings. And Sherri's Chicken Lasagna caused him to repeatedly talk about how he would of never guessed chicken would be tasty in lasagna.

Oh, and the meatloaf Kristen made. Effin' Meatlof; how I hate you! As a kid I never ever liked it and Mom made it once a week, so I had to smell that ketchupy sirloin loaf roasting often. Gag! Then as a newlywed, I thought I would surprise my meatloaf loving husband with one I made especially for him. It was just for him because I had no desire to eat it. Kyle took one bite of that specially prepared beef loaf and said it needed to be cooked longer. I believed him because I wouldn't know better. That jackhole put it back into the warm oven to only forget about it; thus letting it burn up like a large piece of coal.  That is when I proclaimed meatloaf and I were breaking up FOREVER! Oh, but the Meal Train broke that proclamation and Kyle got his meatloaf despite my ban.

Not only did the families bring homemade meals, they got clever and called ahead to see what our Chinese order would consist of before bringing us 5 folded white boxes with red pagodas.  One mom brought two Papa Murphy's pizzas over which made Franki Ann super happy as her favorite meal is cheese pizza. And a supremely generous family provided a take-out meal from Outback; I had never had Outback and I was impressed. Then there is the infamous Sunday morning knock at our door, where Kyle teared up because he was given a very full yellow box of Lamar's Donuts.



Unfortunately, I can't blame the holidays for the past two years of "winter weight" I have gained; I blame that blasted train of meals. It's not like I can say NO to Beth's strawberry cupcakes or Buffey's Chocolate Cake. BTW this cake actually weighed 7 pounds and had two chocolate cake layers and a brownie bottom layer. Then those three layers were separated and covered in home made chocolate frosting. It was a whole new caliber of cake. Who could resist that chocolate craziness? Both Franki and Moe have conned Buffey into making her chocolate cake for their respective birthdays.







The most astonishing facet of my whole drama is not the three surgeries or the inability to stay conscience while vertical. It is how many friends and acquaintances showed their concern for us. With their time and effort my family was properly fed, but without the trans fats of McDonald's or Taco Bell. In hopes to pay if forward, there is no Meal Train I don't urgently sign up for!

#3-If only Edward Cullen were Real...

I managed to have 8 lumbar punctures performed on me as a treatment for the IIH before choosing the VP Shunt as a permanent fix.  For those who have not eaten in the past 20 min, a lumbar puncture (aka a spinal tap) is when a doctor sticks a torturous needle into my spine and attempts to avoid hitting my vertebrae. Kyle and I both know from blind LPs (LPs done without x-ray assistance) that when the needle DOES hit the vertebrae, an electric shock pulsates down the leg. This is why with my therapeutic LPs, I refused the potential pulsating leg option and non-confrontationally DEMANDED the use of a fluoroscope machine to aid a radiologist to guide the needle right to the sweet spot. The purpose of this barbaric process is to collect possible infected CSF, measure pressure, and drain excess CSF.

To make this whole vodka-worthy situation worse, the needle prick sometimes doesn't clot correctly and the spine leaks CSF. The leak leads to brain sagging... I inappropriately picture my back brain lobes resembling old boobies without a push-up bra. Then the droopy lobes cause a mind bashing headache. Now the medical answer for this sagging is disgusting and I often wonder who and how this remedy called a blood patch was discovered. It had to be one of those accidental discoveries that involved a boat-load of alcohol and/or drugs.

I have had 2 blood patches. My first one was explained and executed with sweet care by an anesthesiologist named Dr. Poe at St. Lukes in Lee's Summit. Dr. Poe was from Louisiana and his southern twang hypnotized me as he extracted what seemed like a quart of blood from my arm, and then within the same breath injected that sweet vampire nectar into my spine. The hope is that the new blood will clot the temporary hole and suspend the brain enough to where it wasn't sagging. Dr. Poe's procedure worked perfectly and as he used words like Ma'am, Y'all, and Piggly Wiggly Buggies (shopping carts for you damn Yankees), my headache vanished. My brain received that much needed push-up bra and I didn't even care that the support was provided by blood freakishly taken from my arm veins.

 

Ironically, a pic of my Twilight gang seeing Eclipse in matching T-shirts.



The second patch did not involve a gentleman, but an arrogant short man who resembled Sammy Davis Jr. All I can remember from the second patch is telling Dr. Sammy Davis that I needed to be laying down or I would pass out. As he heaved with frustration, he said "Nope...that is not how it is done" and started pulling blood from my arm. Then I heard him exclaim "Oh Lord!" as I fainted off to the right of the bed. I am not sure how they did the creepy patch while I was unconscious and why there was so much blood on the bed sheet and floor, but my head felt a whole lot better and I was released quickly not having to encounter the impatient doctor again.

When I went to a post-op appointment after getting my shunt, Dr. Basta told me that I would not have to ever have another LP again. If infection or pressure problems were probable, he could just tap the shunt and leave my spine alone. I call bull shit on that because I am looking at having one soon.

#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.