One Who Flew Over The Cuckoo's Nest

I wish I could say the reason I have been dormant on this blog is because I had a bundle of joy, traveled to great places, received a promotion, or moved to Bali. No such luck. I have; however, strengthen my spirituality, prayed so hard that I fell to my knees as my head dropped to the ground, cultivated an empathic heart, and have become one step closer to being a Neurologist, Endocrinologist, Psychiatrist., and an Infectious Disease Doctor. The past two years still has had lots of doctors and surgeries, but another facet entered my Cluster of Crap that made sharing scarier due to the undeserved stigma of mental illness. I fought the "brain worms" or the "demon fingers" (mental illness) all along with my new physical illnesses. And my hope is to share my story hoping to ease someone else's pain, even if it is for 5 mins. Honestly, I feel extremely vulnerable sharing all about my madness, so please if you are going to judge anyone who struggles to feel whole, click out of this post. So now I will continue my story with a different purpose. Two years ago I wanted emphasize to take charge of your own healthcare. Now I want to create a positive awareness of mental illness from my little suburb, from my little house, from my little bedroom sitting in my grandma's old olive green recliner. 

Summer of 2014 my family and another family had traveled down to desolate part of FL and simply laid on the beach and relaxed. I felt so nice. We scheduled this trip only 6 weeks after having an easy hysterectomy. I had this procedure because my fallopian tubes continually filled with fluid (hydrosalpinx) and one had ruptured. But ovaries stayed in, so no worries about going into perimenopause/menopause.

Literally two days after getting home from FL, I fell into a horrendously horrible depression. I had dealt with anxiety, but not depression, and not at this level. After two weeks of feeling this way I went to a counselor, who put me directly into outpatient intensive therapy. After 5 weeks on an antidepressant and 5 day-a-week of "depression school" I was no better. Actually, I was worse. I could not interact with the kids, could not make dinner, could not even watch TV. To minimize the internal pain, I did start hurting myself, which is very common in anxiety and depression. Who knew? However, that did land me on the Behavioral Health Floor at Shawnee Mission Health Center.

EMBBARRESSING- Huh?  Now I could write a collection of funny essays about the other patients; my roommate included. She brought every item she owned in 12 brown paper bags. Due to the suicide scare the floor was always heavy with, she couldn't keep all her items in the room. The first morning there, I woke up to her furiously yelling at a staff member because the staff member would not allow her to have her Brittany Spears perfume (I guess a patient could drink the perfume as an attempt to kill their selves?). She was troubled indeed, but she introduced me to the show Cops; I had never seen it. So every lunch we watched cops running around darkened neighborhoods to capture a criminals. But I never really knew what that criminal did; interestingly the show wasn't ever very clear about the crime. I haven't watched Cops since, I feel like I would be cheating on my roommate, and because I didn't like the show.

My favorite lady was a 65 year old alcoholic who had started some kind of alcohol rehab program 27 times, and she had broken her back 5 times due to drunken tumbles. Anyway, her lesbian partner had passed away 6 months ago, but she was now dating a 24 year old MAN. But the best part is that she was Bipolar-Manic Only. So she never ever stopped talking, hugging, cussing, flipping the staff off, or dancing in the cafeteria. Then it clicked why she failed so many alcohol programs...she needed the alcohol to be her depressant. I learned a lot about people in those 4 days; unfortunately, humans have pain and if they don't have a good support system or coping strategies, they need to numb the pain to live and carry out responsibilities. Alcohol, sex, and drugs provide that temporary numbness. The majority of addicts I spent my 4 days with were just trying to survive like me in my depression.

I did befriend a dear 67 year old Vietnam Vet who took me under his wing on the first day when I was so scared....I was so frightened, I was in a closet crying to Kyle to get me out, and when I came out of the closet snotty and tear soaked The Vet was there for me. The Vet had dealt with suicidal behavior for 32 years and was obviously suffering painfully with PTSD and he was just now getting treatment. He called his wife his angel and he had a little dachshund that he missed terribly. He went so long without treatment his depression was being treated best by Electroshock Therapy every other day at 5am. On those mornings he was a bit hazy, but he was always going to be a Marine and protect the weak, like me.

Now the hospital Psy. Docs could not understand why no antidepressants were working. We had gone through this whole routine during the intensive outpatient therapy group. All they did was give me a pill and see if it worked day in and day out. And never did work. The docs never took blood or did a physical examination. Then I had an April-sized miracle happen. A friend and neighbor saw an outstanding Psy. Doc regularly, and she happened to have privileges at Shawnee Mission Health Center. So my friend told her my story and that Psy. Doc took time out of her busy practice to come visit me. After hearing about my Hysterectomy, she immediately did blood work for my girlie hormones,  and sure enough I had zero estrogen, progesterone, and testosterone. My ovaries had died because they were the kind that got their blood supply from the uterus, which was gone.  She put me on Bio Identical Hormone Replacement and got me the hell out of there. Proving that a good doctor listens and assimilates what the patient says or at least does blood work and a body exam. Sure enough within 6 weeks I was joyfully making Halloween costumes for my kiddos I couldn't even interact with 2 months ago. I do often think of the Vet and if he has some peace yet.

Happy 10th Surgery

Friday I celebrated a ridiculous milestone; I was having my 10th surgery in 8.5 years. I am including my 3 C-sections, which were worth the incisions because I got to bring home a baby. The latest surgery was an umbilical hernia repair...the easiest surgery to date. Now I did not have this hernia before my May Hysterectomy, but did after. When I asked my OBGYN how I developed this hernia, she kindly said I didn't take it easy enough while recovering from the Hysterectomy. So looking back, the gardening, vacuuming, and grocery shopping I did right after my surgery in May wasn't a great idea. Apparently I should of listened more to Kyle when he obsessively told me to sit down and relax (damn it, I hate it when Kyle is right).

 So I found myself back in a pre-op bay getting hooked up to blood pressure and O2 monitors. Once again I am stripping and putting on the attractive hospital gown, booties, and hair net. Once again I am telling doctors and anesthesiologists my medication list and ALL the previous surgeries. It is all so familiar that I have no fear or anxiety. It is so familiar I have the same pre-op nurse I did for my May surgery. Judy, a 62 year old mother of 4. All her kids went to college but it took her fourth child 6 years to graduate from Missouri Valley. She recognizes me from my brain/VP shunt history. Luckily everything is running on time, and I am in the OR right at 9:00am. No 4 hour wait in a Jayhawk-infested hellhole this time! As I enter the OR I get a few more nurses mentioning  that I look familiar. Soon I am given oxygen, then the sleeping medicine.

I wake up in recovery, and my belly actually hurts. I tell them it is an 8 out 10 on the pain scale. I had really thought this would be an easy and near painless procedure, but my belly tells me different. After an hour, I am moved to a post op room to recover before heading home. The IV meds they were giving me were not working, so I ask for some oral painkillers. When the nurse, not Judy, goes to give me the pill she begins to freak out because there is a lake of blood on the ground. Meanwhile I begin to feel woozy. She is wrestling my with my sheets and IV to see what had happened. Kyle keeps calling my name and before they ask him to leave he insists to the now 3 nurses that I am going to pass out. Unfortunately, he is pretty good at recognizing the "pre-face out face."

Needless to say he was right, and I wake up to 3 nurses and a doctor shaking me and saying "April, you need to wake up." I guess a cap fell off a IV port and my IV was literally draining me of blood. I felt like some poor sap on True Blood. STAT blood tests showed them I didn't lose too much blood, and I was able to go home shortly after. Scared that this nurse's mistake would keep in the hospital over night, I jumped at the chance to go home.

I have no more surgeries on the horizon and that is such a relief. Now I have to figure out what to do in my surgical patient retirement. And United Health Care won't know what to do as I won't meet my deductible next year.

Cerebral Venogram: No stent for me.

Earlier in the post titled:

The 18th lumbar puncture gone wrong and the calm husband who turned ASSHOLE I talked about possibly being a candidate for an alternative treatment called a stent. Then we could remove the shunt and leave me less prone to infection and malfunctions. However, today an invasive test concluded that I was NOT a candidate for a stent. The test Dr. Abraham performed  today was a Cerebral Venogram. It was a very interesting test and yet another procedure that had to be the brain child on a 4-day drug and alcohol bender. After waiting four hours in a Jayhawk facility due to an emergency before me, it was my turn to go in "the room." This room resembled a training facility suited for NASA. Huge machines decorated the room and 20+ oversized monitors hung on the walls and the ceiling. In the middle of all the major technology was a tiny, cold table for me to lie on. Exactly how anyone would want to spend a beautiful Monday morning.   I was laid flat on the table underneath a 3 part x-ray machine. After all the technology was in place, Dr. A came into the room and began to saturate my groin with Lanacane. Don't worry, Kyle, that sounds way naughtier than it really was! After my groin was numb, Dr. A strung a very long catheter through my groin into my Venous Vein. This vein provided a pathway for the catheter to travel up my thigh, stomach, chest, neck and finally to my head where it spewed out contrast and measured the pressure in the major veins in my brain. The oversized monitors were aiding in the threading of the catheter.   Earlier Dr. A had seen some stenosis in two major vessels leading to my brain on a scan called an MRV. This alarmed him enough to proceed with the Venogram. However, his MRV findings raised my hopes for getting a stent and saying adios to the trouble making shunt.   Once the catheter hit the blood vessel in the right side of my head, pain radiated throughout my brain. As I mentioned this to a nurse she started pumping Fentanyl, a pain killer, through my IV. Also I could hear the catheter releasing the contrast...very eerie.   Next he had to take pictures. He had me close my eyes and mouth and breath in through my nose to take a picture of the vessel. Then the catheter was able to measure the pressure in my veins to see if the narrowing was causing increased pressure in my brain. After the right side he had to do the whole thing again on the left side. The left side was even more painful due to my naturally curvy veins. More Fentanyl was pumped into my IV though it was not helping the headache. Once contrast was released, measurements taken, and pictures obtained on the left side, Dr.A pulled that long catheter out of my groin and applied pressure to the puncture site for ten minutes.   In recovery I continue to battle a raging headache. After two more rounds of ineffective Fentanyl they decided to give me Oxycodone which helped my 8 out of 10 headache subside to a 4 out of 10. That is when Dr. A came into recovery to deliver the bad news that I was not a candidate for a stent. After he delivered the news, I was rushed off to a STAT C-SCAN because my blood pressure had dropped, one of my hands was freezing and the other was warm, and my smile was lopsided. Fear of a stroke, they got me to the CAT-SCAN room within 10 mins and the scan was read within 2mins. It was a clean scan and everyone could breath again.   On the way home, Kyle asked me how I felt about not being able to get the stent. All I could say was I 75% disappointed and 25% relieved. Relief from not having to endure any other brain surgeries and relief from knowing that the shunt IS the best treatment for me. I am glad I consulted with Dr. A and had the Venogram because it gave me peace with having a shunt

What...you want to operate where? Not my head?

Throughout this winter I was having wicked side pains. The pain mostly sat on my right side and the stabbing feeling prevented me from doing simple things like rolling over in bed or pulling my right leg up into our van. Now up to this point, all ridiculous medical mishaps had been due to the effin' shunt. So what do you imagine was my first inclination for the side pain? Yes, I envisioned the shunt tubing wondering around my abdomen whipping any organ that got in its way. Reserving that thought to myself, I went to my family doctor, who has struggled through this whole soap opera with us, with my side pain complaint. When a normal patient shows up with side pain the appendix, liver, or gall bladder are looked at. However, he, Kyle, and me are programmed to go for a Dx of a shunt malfunction. What else could it be in me? After three revisions in two years, the past had to dictate the future. I was sent off for a CT. Mysteriously, other than some fluid collection around my liver my CT looked clean.

So what was causing this pain? Still thinking it was the shunt we contacted the neurosurgeon and was abruptly excused with some serious accusations that I will further explain in a post called "An ice pick to the head: The accusation that I am compromising my shunt on purpose."

Thinking outside the box-I thought maybe, just maybe, my side pain had NOTHING to do with my shunt, despite my past history. Therefore, my next stop was to see my OBGYN. I know this was a normal stop that should of happened a lot earlier, but we were consumed with a shunt Dx.  My OBGYN is the antithesis of all the "Nuero" guys I had been working with. She is calm, talks slow, listens to me, and acts with diagnostic tests(as opposed to hunches). All this, while being a very capable doctor in her field. After an ultrasound, CT, and MRI it was discovered that both my fallopian tubes were filled with fluid. This condition is called hydrosalpinx. She compared my fallopian tubes to stuffed sausages, so I had eggs and sausage in pelvis...sorry...poor joke. Her recommendation was a hysterectomy via a minimally invasive ROBOT...yeah a ROBOT!

I initially pictured a robot feeling me up, but it is more like an arcade game where the doctor is moving scalpels and cameras inside the patient via a control board five feet away from the patient. This seemed similar to the iconic game Pac Man. Dr. Woods is behind the controllers maneuvering her Pac Man to devour my cervix...500 points; one fallopian tube 250 points; my uterus 900 points (the big one).

Now using the Pac Man robot has many advantages. It is the least minimally invasive method for a hysterectomy because the instruments Pac Man is using to devour my ovaries are very small, so there is very little tissue damage. I have four small holes and not a huge across the belly incision like I did for my C-sections. Also there is less bleeding and less chance of infection.

Pre op was a bit weird, as I was used to them prepping my head by putting faducials on and marking and shaving places on my scalp. However, a hysterectomy pre op has shaving, just not on the head and every once in awhile I would catch myself from telling the nurse "No, you need to mark my head so the surgeon knows what side to operate on." It was all very foreign having the other end worked on.

So after have 4 brain surgeries, I thought this surgery was going to be a walk in the park. Dr. Woods was telling me I would have a 2 to 4 week recovery. However, in my warped brain I gave myself 5 days to heal. Yep, only 5 days. Hell, I had Zac Brown tickets bought for Lincoln Nebraska 6 days after the surgery.  No one told me 5 days recovery, I just thought that was a reasonable amount of time to heal after getting major organs cut out of me. As a result I overdid it on all physical activity and gave myself a hernia. After that I did begin to take it easy. But seriously I thought this surgery was going to be like getting a mole removed, so much so I asked if I could go home the night of the surgery. I actually begged if I could go home.and they said absolutely not. This turned out to be a good thing since my bladder took a while to wake up. I was unable to void, so I had to stay two nights until I could pee on my own. And, boy I did the Potty Dance once I peed on my own! Yipee, I could go home then!!!!

Though I have had some little infections and the hernia, my side pain is completely gone. I have learned there is no reason to automatically jump to the shunt. Yes, it should be in the back of our minds, but it should not guide my medical treatment. And always, I learned to see several doctors to get their opinion on the situation because they might have the answer!

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!

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!

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!