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!

Short Term Memory Loss and A Bedazzled Belt Clip

This whole cluster of crap has depleted my depth perception, banned me from the Armed Forces, and restricted my roller coaster life. All concerns I can easily live without. Weeellll....maybe not the depth perception. Our poor swaggerwagon has received 3 or more "accidental" dents due my parking. I need to stick to those back empty parking spots where the old and automotivally proud park.

 

Anyway, as I continued with my long term sub job I noticed tasks I normally would remember, like picking the class up from recess, coming back to a student to answer a question, or changing a lunch order would completely skip my mind. This lack of memory was very unusual for me. Typically, I enjoyed boasting to my forgetful Kyle that I didn't need to write anything down and that I was impeccable with names. However, as my mind was being challenged in "the big girl world," my mind, in fact, was failing me. I denied it for a while chalking it up to stress, but Kyle approached me about it after I forgot Franki and Moe at school (no judgment), and I got that dreaded phone call from the school's secretary inquiring if I was on my way to pick them up. "I forgot them, but don't tell them," I said into the phone as I dropped my shopping bags on the front step of house, ran to the beat up swaggerwagon and sped to get my stranded birds.

 

Right around then I had a neurologist appointment where Kyle urged me to bring up this memory situation, so I did. And the neurologist sent me to a Neuropsychologist; whoever knew such an occupation existed?  After a 2 hour consultation, a 4 hour mind numbing testing session, and another hour long recap consultation, it was concluded that I, in fact, had some short term memory loss and delayed processing skills. Personally and honestly, I feel like we could have shortened this 7 hour process to one quick test. The test involved the test proctor giving me 20 random words to remember in any order. She said them verbally and as soon as she was done saying them, I was to recite as many as I could remember back to her. Planning on this being an easy task, I was devastated when I could only spit out 4, yes 4, of the 20 words she had told me. That simple 3 minute test told it all. The Neuropsychologist recommended some cognitive rehabilitation and hinted at some compensation skills.

 

One of the compensation skills was to keep a meticulous calendar. So I went out to T-Mobile to find the phone with the most user-friendly calendar and began adding EVERY minor event I could think of. I set up an extensive network of alarms to trigger my brain that the kids need to be picked up or Henry had speech therapy. I was set...or, I thought I was set. The key, my friend, to using a cell phone calendar is having the calendar/phone with you at all times and having the ringer turned up. I often left my phone at home or forgot to turn the ringer up. So my alarms would go off, and I would be oblivious and in the same situation as before.



My phone isn't too conspicuous.

 

This lack of phone care actually became a huge deal in my marriage. Kyle just couldn't fathom having his phone further than an arm's length's away, and I just didn't have the same urgency. Even though I, unlike him, actually needed my phone to keep me on time and in the right places. So I got one of those super hip belt clips to keep my phone attached to me. I know belt clips scream "SHE IS AWSOMELY HIP!" However, Kyle was not a fan of my solution. He made fun of me and mentioned denying marital relations if I kept wearing my magnificent belt clip. I was even willing to bedazzle it, but rhinestones were not going to convince him to accept wearing my phone on my hip.
 







Well, if a bedazzled belt clip wasn't going to be accepted I saw another idea for keeping the phone on me. At Henry's speech class one of the moms wore her phone around her neck like a backstage pass to a concert. MIND BLOWN! Perfect, I thought to myself. That night I brought the backstage pass idea to Kyle. I think he was more disgusted with that than the belt clip. So we have met in the middle. I try harder to make sure my phone is with me and he is more forgiving if it is on the bed side table and I am at Hobby Lobby. 

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!