Esophageal What???

My mother recently subjected herself to a sleep study.  She did the proper scientific research before embarking on this experience...she read the blog account of mine.  She told me that it totally cracked her up. I couldn't remember what I had written that was so funny, so I had to go back and re-read the post.  My kids wanted it read aloud to them and they cracked up.  Whether my posts of my experiences are funny or informative, I'll let you decide, but I decided to keep posting about these things.  Surely someone else is going through the same thing and either needs a good laugh or to be informed about what will happen.

So, today's topic will be my esophageal manometry.  Mouthful, huh?  No, pretty much a noseful.  But we'll get to that.

No one can pronounce or spell the test.  Ee-sof-a-gee-uhl man-om-eh-tree--that was my attempt to show you the pronunciation.  Did it help?  Are you saying it out loud to yourself now?  Don't try to deny it, you know you are.  Now, say it five times fast.  Just kidding.

This test is to measure the pressure in your esophagus.  My surgeon wanted it done to decide if I am a good candidate for a Nissen fundoplication surgery.  Another mouthful, but you're on your own for pronunciation, mostly just because I am not 100% sure how to!  Maybe before I get into the esophageal manometry, I should explain how I arrived here.

I have had acid reflux and GERD (Gastroesophageal Reflux Disease) symptoms for a couple of years now. I have tried every medication available to treat it and none of them works for me.  My reflux is bad enough that I wake up coughing, choking, and vomiting some nights.  More recently, I started aspirating.  The first time scared me half to death.  I woke up one morning, choking and coughing with a horrific pain my my chest.  I was clawing at my neck and chest, gasping for air, and choking.  I thought I was having a heart attack.  Luckily, my paramedic husband was home and I stumbled out to him.  He asked me if the pain was sharp or crushing.  In between coughs, I gasped, "sharp."  He said it wasn't a heart attack then, and judging by the way I was coughing and choking, decided I must have breathed in some of the acid/stomach contents that came up.  I can tell you that it burned and hurt like nobody's business!  I was coughing for hours afterward and my lungs felt raw the rest of the day.  This happened several more times and I finally went to see a gastroenterologist.

He wanted me to have an EGD, or an endoscopy.  I wasn't thrilled with this testing, but it pales in comparison to the manometry.  Hold your horses, I'll get to that one in a minute!  I had to check in to the hospital and luckily was given anesthesia.  Not sure I could have handled that one without it.  Though, I think a manometry should definitely be done under sedation.  I can understand why it isn't because you have to follow commands, but I'm thinking Versed would be amazing so you can just forget the whole thing ever happened!

During the EGD, they also inserted something called a Bravo monitor in my esophagus that was supposed to record the number of reflux events in a 48 hour period and transmit the data to a pager-type device you wear on your belt or keep close to you.  You also have to keep a log of what you eat and drink and when you lie down, etc.  Then you turn in the pager part and after a few days, the monitor detaches from your esophagus and...well...makes its "exit", shall we say.  It felt funny.  I could definitely feel the monitor there, sort of like having a tickle in your throat that you can't get rid of.

I am told that my GI doc doesn't impress easily and he was a little miffed that no one had told me to discontinue my reflux meds, but he was impressed by my results.  Apparently, I had 233 reflux incidents in less than 48 hours.  And I thought it was actually a mild sampling.  I have a small hiatal hernia and some mild esophagitis.  If left untreated, severe acid reflux can cause lots of problems like Barrett's Esophagus and esophageal cancer.  Even without that, aspirating can cause pneumonia and I am just plain tired of being awakened in the night choking and vomiting and having to sleep in the recliner most nights.  So, the doc referred me to a surgeon.  He said that this guy was the best in the KC area at this type of surgery.  I went to see the guy and right off he tells me that I am too overweight for the surgery.  He said that being overweight causes too much abdominal pressure and that since I have a good amount around my mid-section, it is likely that the surgery would undo itself.  He recommended that I have a gastric bypass and gave me a referral.  I was dumbfounded.  I went in there expecting to be scheduling the Nissen fundoplication and instead he's telling me to have a surgery that I do not want nor does my insurance pay for.  I decided to get a second opinion.

While I have been on Weight Watchers and have lost some weight, it's slow going.  Am I expected to continue to suffer until I reach the "ideal weight"?  So, I went to see the doctor that took my gallbladder out.  He said he had never heard of such a thing, being too overweight for this type of surgery and agreed to do it.  He just needed me to have the esophageal manometry first to be sure that after the surgery I can swallow well enough to get my food and drink past the surgery site.  A Nissen fundoplication is where they wrap part of the stomach around the lower part of the esophagus.  The point of this is so the squeezing of the stomach muscles clamps down on the esophagus to prevent the stomach contents from coming back up the esophagus.

Now, back to the topic at hand...the esophageal manometry.  I knew ahead of time that this involved them sticking a tube down my nose and into my esophagus and having me swallow to measure the pressure and be sure that the esophageal muscles work in sequence from top to bottom, moving food or drink down the esophagus.  I was not looking forward to this.  I don't want anything stuck through my nose.  And I gag very easily.  Which is why I have cavity problems--brushing my teeth makes me gag.  I have a two gag maximum or I end up emptying my stomach contents.  I can already tell you that my advanced directives will say "no feeding tube."

I got a packet in the mail with a pamphlet about the test.  I had been encouraged by hearing that they numb the back of your nose and throat, but then they had to go and say that sometimes people have a gagging sensation.  Sheesh.  If normal people gag, what will that mean for me?  I went back to the same hospital where I had my EGD and checked in.  When the nurse came to get me, she said that the tube was being cleaned, but we could go ahead and get everything put into the computer.  This was alarming.  I mean, I guess I knew that this is equipment that isn't disposable, but the idea of this tube being shoved down someone else's nose before me was disturbing.  I don't know why, but I was picturing an elderly man with long white nose hairs.  I was also a little worried about this because after my EGD at this hospital, I ended up with a viral infection.  Was it just an odd coincidence that I woke up from anesthetic with a horrible sore throat that I attributed to the EGD, but didn't get better so I called the hospital and was told it was abnormal and to go get a strep test?  I was worried that I would catch something from this equipment!

When they brought the tube in, they had it wrapped in a towel.  I thought it should have been in a bio-hazard sealed bag or something.  The nurse started squirting this gel-like stuff into my left nostril and asking me to "snort it".  For years, I have told my kids not to sniff when they have a cold so they don't get an ear infection, but here I was, sucking that stuff back until it went down my throat.  I'm thinking now it won't just be a viral infection, but an ear infection as well.  She kept putting more in and I kept sucking it back.  Then she picked up the tube.  Oh. My. Goodness.  That was much bigger than I had been expecting.  If you Google esophageal manometry, all the articles say "small tube"--NOT!  I was thinking spaghetti-like.  Maybe half a dozen pieces of spaghetti!  I began to wonder if I was going to be able to do this.  But, the nurse didn't wait or ask, she just started shoving.  I was told to breathe in through my nose to avoid the gagging.  It was thoroughly uncomfortable, but I managed to not gag.  Once she got it in place, she taped it to my nose and had me lie back on my side.  She had a syringe that she filled with water and squirted into my mouth and instructed me to swallow it down and then went to tell my GI doc that she had started the test.  She continued the test, periodically giving me swallows of water and then telling me to just breathe.  I was fine as long as I was just breathing.  But, she started talking to me while she was waiting on the doc.  She was such a nice nurse, but I didn't like talking with the tube in.  Talking created saliva and then I needed to swallow or I felt like I was choking.  Finally, we heard the clip-clop of the doctor's shoes and he came in and watched me swallow.  He said it looked good, but that he would review the results and pass them on to the surgeon.

The nurse did one more swallow and some breathing and then removed the tube.  When she removed the tube, she didn't do it slowly, she just pulled it right on out.  Very weird sensation, but I think if she had gone slower, I would have gagged or vomited.  She handed me some tissue, walked me out, and gave me a hug.  The hug was nice, but I felt used and abused.  There are things like this that you feel like you should get some sort of reward or trophy or SOMEthing because it was such a big deal to you and such an accomplishment that you can't believe you are walking out to the car like nothing happened and driving yourself home when you feel like you should be doped and in a wheelchair for something like that.  For the rest of the day, I felt like I had a cold or sinus infection.  The one nostril felt stuffy since it was all numb and I was blowing out the numbing gel half of the day.  Once the numbness wore off, my throat was sore.  I was volunteering at Vacation Bible School at our church all that week and while the other adult in my group did all of the teaching, thankfully, it's next to impossible not to talk to a group of children.  By the next morning, though, I felt back to normal, so no viruses or infections, despite my misgivings about the use and reuse of the equipment.

The test came out fine, so the next step is to have the surgery, which is scheduled in less than two weeks.  I'll let you know how that comes out!

Stop the World, I Want to Get Off

(Originally written March 2013)

Oh wow, where do I begin?

This blog post will not be creative or clever or humorous.  This blog post is about me and my life lately, which has most definitely not been humor-filled.

So, after about four years of having my depression medicinally controlled, I recently had a relapse.  I've also been having panic attacks and I finally admitted I needed some therapy regarding my ex-husband trying to strangle me, so they diagnosed me with post-traumatic stress disorder.  I have put on a lot of weight (not sure how since I don't eat much and have IBS) and have been living with physical pain for the past few months that has been getting increasingly worse.  My doctor has been trying to get my GERD under control and finally sent me to a specialist.  They did an endoscopy and placed a monitoring chip in my esophagus that recorded 233 reflux events in 2 days.  That impressed the unimpressable specialist, so he sent me to see a surgeon to consult about having a Nissen Fundoplication surgery.  I'd never heard of that before, but it's a surgery in which they wrap part of your stomach around the lower part of your esophagus in order to clamp it closed and prevent acid from coming back up.  If they are able to keep it laproscopic, it is a few days in the hospital and a two week recovery.  But, if they have to do open surgery, the recovery is six weeks.  My reflux has been so bad that I have aspirated numerous times on the acid, which is both extremely painful and thoroughly frightening.  However, the surgeon I consulted with told me that I was too overweight for that surgery and recommended a gastric bypass. Not only do I not want any bariatric surgeries, but my insurance won't cover them.  So, I guess my only other option is to lose weight.  My husband and I have started using Weight Watchers three weeks ago and so far, I have lost 7 pounds, so I pray it continues to help us.  Along with going to see the GI doctor, I have been trying to make the rounds, doing what my doctor has recommended.  Tried to see a OB/GYN about possible tubal ligation syndrome and some painful cysts, but her bedside manner left something to be desired, so putting that on hold temporarily and will seek out a better doc later on.  I'm also going to a psychiatrist and therapy for the aforementioned issues.  They changed my medication and that made things really interesting.  I had an allergic reaction to the new antidepressants and broke out in a rash and my hands swelled and went numb.  Another med I was given caused dizziness.  I felt like I was walking around in a narcotic fog.  I felt unsafe driving or going to work.  Between my extreme joint pain, the dizziness, and the depression, I felt like I could barely move.  The new meds seem like they are helping, but it's slow and I have been weepy in the meanwhile, which I hate.  I get really frustrated with myself that my body betrays me.  Everybody has stress, so why do I bawl and get migraines and have panic attacks when I am stressed?  Lately, I have felt like I am barely able to take care of myself, let alone my family, or have the strength to do my job or perform my household duties.

Arrena, my oldest, is 12 and in the 6th grade.  I have long considered her trustworthy and responsible.  However, the growing pains of starting middle school have been harder than we thought.  Things are different than when I was her age.  We didn't have texting and internet or social media.  So, I needed some time to think and pray and determine what the rules would be for her.  In the meanwhile, the rules were: no boyfriends, no texting/talking to boys on the phone, no boys on the internet.  We got her a cell phone for Christmas, primarily for texting her friends.  The rules of the cell phone were no boys, no deleting conversations, and mom had free reign to look through the phone.  One day, a friend called me to report some suspicious content on Arrena's Facebook page.  One of her friends had posted something about her having a boyfriend.  I confronted her about it.  At first, she tried to lie to me about it, but finally admitted this was her second boyfriend.  Much crying and talking and apologizing, and I made her break up with her boyfriend in front of me and didn't let her go to the Valentine's dance at school.  I thought that would be punishment enough.  A few weeks later, her sister ratted her out that after breaking up with the boy in front of me, she renewed the relationship until she decided he was cheating on her.  Her friends were telling her that her mother would never know.  As punishment, I took her phone for a week.  The following day, I went through her phone and found that she had another boyfriend.  She was talking to her friends about texting a boy, but I couldn't find any text conversation with a boy because she had deleted it.  I found cut-and-pasted conversations in her notepad, talking about "love."  I had known she had a crush on this boy and had asked her a few days before if they were "dating" and she told me no.  It turned out that she had hidden him in her phone under a girl's name.  It's not so much about the "boyfriend" because at this age, it's little more than a title.  However, we know from culture that "things" are happening faster and faster these days.  I want to protect my daughter which is why I have rules.  It's not as much about having a boyfriend as it is about breaking the rules, and lying, and sneaking around, and being deceptive.  So, this time the punishment had to hurt.  I took her phone permanently and grounded her from phone, internet, social media, sleepovers, and extracurricular activities indefinitely.  I think quitting drama club hurt her the most.  She started off defensive and angry.  We talked about how I cannot MAKE her obey, but that she has to decide whether or not she wants to follow Christ and what Jesus wants her to do.  She asked me if she had to break up with him.  I told her that judging by the last time, I couldn't make her do anything, but that she should figure out if she wanted to live in disobedience and what being Christ-like meant.  After a few days, she came to me and told me that she had ended the relationship.  I am not sure how to trust her or how long it will take to repair the broken relationship.  She has been complaining to everyone who will listen about how unfair the indefinite grounding is.  I'm sorry, but since when did these PRIVILEGES become RIGHTS?  Some days I really think about switching to an Amish-like existence.  I think it would be better for all of us.  And apparently her dad is criticizing my punishment behind my back, all the while telling me that he agrees and doesn't like her friends and doesn't believe she should be on the internet at all.  Nothing like some cooperation in parenting and undermining my authority.

Kimberly is 10 and in the 5th grade.  She has been having attitude issues for a couple of years.  I have been concerned about her mental and emotional health for a while.  She doesn't sleep well and was having some crying spells.  She followed her sister's suit this past year in going through puberty and that ramped everything up about 30 notches.  She went from being mama's girl and a touchy-feely kid to being mean, hateful, and not wanting anyone to touch her.  I tell her I love her and she says, "whatever."  I ask her what she's up to and she says, "what do you care?"  I try to hug her and she flinches like I'm diseased.  She used to crawl up in my husband's lap and begged me to marry him and now she treats him like something she stepped in.  And it's not just us.  I've caught her screaming at her brother that he is a freak.  She mouths off to her teacher.  And she tells off fellow-students. And before I even finished writing this blog, I discovered by accident that she'd been looking at pornography on the Internet.  Then I found out that she was contemplating cutting.  She not only told a friend of mine and admitted it to me, but apparently one of her friends reported it to an outside agency that reported it back to the school, so the principal pulled me aside.  She is now on a mild antidepressant.  Then her sister squealed on her, as payback, that she had a boyfriend too.  Talking with her about these things initially improved things.  The other day, she was throwing attitude at my husband and I and when I spoke to her, she started questioning her faith.  She said that she's glad it works for me, but it doesn't work for her.  She said that if God is real, He doesn't care about her because He isn't helping her.  This breaks my heart more than anything.  I know how hard life is and I can't imagine doing it without having God to help me, without having hope.  I don't have many expectations for my children as they grow up or any high and lofty dreams.  The one thing that I want for them is to follow Christ.  I want them to grow in his love and to be Christ-like.  I don't want them to struggle through life and make life-changing mistakes.  And I want to see them in heaven someday.

I've written about Billy's issues before.  He's 8 and is in the 2nd grade.  We have been dealing with his behavior issues for years.  He has been going to a psychiatrist and counseling for 3 or 4 years.  We have been arranging and rearranging medication for him as things work and stop working.  They never wanted to pigeon-hole him, but the working diagnosis is ADHD, ODD, and severe mood dysregulation, although his symptoms could also fit Asperger's, which we have long suspected.  We have had our fair share of problems with him.  Primarily his misbehavior was at home.  He occasionally would act out at school or church, but mostly, he saved his meltdowns for us.  He has jumped out his window, tried to run into a highway, threatened me with scissors, called 911 for the heck of it, screamed obscenities/threats/hate, and threatened to hurt himself, among other things.  When he gets really worked up, we have to hold him down for about 15 minutes and he seems to reset.  He obviously has sensory issues and we know that certain situations will overstimulate him and cause problems.  As this has been going on for so long with little change and he has become more and more violent, the counselor has recommended that we look into in-patient treatment for him.  This is not something that I want to do.  He's my baby and I can't imagine turning him over to strangers.  He is a mama's boy and I am afraid of how he would take it as well.  I will do whatever it takes to help him, but I pray that it doesn't come to that.  This year, he has started really acting out at school.  Numerous times, I get phone calls while I am at work from the school to come and get him.  He has been suspended once so far, if you don't count all the times he has been sent home early.  They have made accommodations for him over and over.  I have tried to get him an IEP or get him into a special ed program, but they don't want to test him yet so close to the end of the school year, and with so little data since he has only recently been acting out at school.  In the meanwhile, I feel like we are stuck between a rock and a hard place.  He is running away from the staff, biting/kicking/hitting adults, throwing chairs, knocking over tables, totally out of control.  And it is usually over small things.  The other day he punched one of the support staff in her stomach.  I'm thankful it wasn't the vice-principal, who is pregnant.  They had to evacuate his classroom one day because he was on a rampage.  I don't know where we go from here because it sounds like the school is at the end of their rope.  I am afraid they are going to expel him and then I don't know what we will do.  When I talk to his dad about it, he blames us, the school, the medication, the doctors, etc.  He thinks we need to send Billy to him, that he needs more time with his dad (even though he goes months without seeing them of his own volition).  I sent the kids there for spring break and Billy's first day back, he was out of control at school again.  His dad thinks I should quit my job and homeschool Billy, even though he is not paying child support and when he does pay, it's an insulting amount.  I completed paperwork for evaluations from Children's Mercy and K.U. Med Center to try to pin down a diagnosis because right now, we are not trusting his psychiatrist.  When I try to research his diagnosis, I have trouble finding it and what I do find says the opposite of what he says.  We quit going to the counselor because he quit counseling Billy and switched to family counseling, which obviously isn't doing Billy any good and wasn't helping anyone else since Kimberly refused to talk to him.  I wonder how much longer we have before the violence at school becomes a criminal matter.  How long til they start calling the police when he hits the adults?  This has to be controlled before he is big enough to do damage to people.  How long will the school drag their feet before they acknowledge that he needs special education classes?  After two months of asking, I finally put my IEP request in writing.  I got a letter that they will contact me within 30 days, which is very close to the end of the school year.  I'm trying to fight for my son to have his needs met and be in a safe environment and not a drain on the staff, but then sometimes I feel like I am defending myself to them.  I feel sorry for him, that he is constantly in trouble, but what are we supposed to do???

When it rains, it pours.  Can't have one problem at a time.  And the world doesn't stop because you are struggling.  You have to go to work, you have to go to the store, you have to go to church, you have to keep going, while people all around you have no idea the turmoil that is going on inside of you.  You smile, you say "fine" when people ask how you are,  you put on the perky persona at work since depression doesn't sell.  Yet all the while, you feel like life is crumbling around you.  Why doesn't everyone else notice?  Why can't they feel the pain radiating off of you?  Why doesn't the world stop spinning?  And then you look around and wonder what is behind all the masks you see.  The cashier at the grocery store, the customer at work, the crazy driver that just cut you off--what private pain are they hiding?  And so you keep smiling, not because you feel like it or necessarily because you want to hide your pain, but because you want to give a tiny ray of hope to someone else who might be hurting.