The Ganglion Cyst Was Not the Problem

I noticed a ganglion cyst on my functional hand around January of 2017.  It didn’t hurt much; only when I bumped it just right.  It just looked like I had a semi-squishy bubble on the palm of my hand that numerous people offered to pop, to which I kept discreetly refusing their kind willingness to solve my problem.

In November, everything changed.  I started waking up to a numb and tingling right hand and arm, with what felt like pin pricks, like when some part of your body is asleep until you wiggle, and the tingling fades away.  In my case, the numbness lasted a good part of the day!  I stopped doing my transfers, because I couldn’t feel the grab bars.  At least I had some good sense not to risk hurting myself. As the day wore on and the numbness eased up, I would help do more of my transfers. By night, when I went to bed, I was able to fully transfer myself onto my bed.

I was in pure agony!  More than once I declared I wanted to chop the whole arm off. Since I was in such misery, I went to lots of doctors’ appointments in search of answers.  I finally found a doctor that would remove the cyst.  However, he first sent me to be tested for carpel tunnel syndrome, because he was concerned I had pain when I shouldn’t have had any. The doctor reasoned, “Why not take care of both issues in one surgery?”

The test was a shocking experience, literally.  Involving electrodes and wires, and an eye-roller comedian of a doctor.   It was determined with one jolt; I indeed had carpel tunnel syndrome, but he had to finish the testing process. The doctor did confirm my suspicion that cold temperatures aggravated the carpel tunnel syndrome.  He also said something that I didn’t want to hear.  I likely have carpel tunnel in my left wrist, too.   He didn’t test the left wrist, because it wasn’t prescribed.  I will cross that bridge if it comes.

After receiving an official diagnoses’ of having carpel tunnel syndrome; it felt like everything went into hyper drive! The last few preoperative appointments flew by, and bang; I had a date scheduled for the surgery.  Exactly one week before the operation, it dawned on me that I wouldn’t have any way to communicate with new personal assistants (PA’s) should there arise an occasion where we needed fill in staff.  So, I quickly contacted my speech pathologist and told her my concern, and she set me up with an alphabet eye gaze board, and a stack of blank grids to fill in my own communication needs. She would have helped me more if I had given her more time.

Note to all AAC Users: If you are scheduled for an operation that will put you in a position where you cannot access your AAC device; make an appointment with your speech pathologist.  Come up with a sure way to get your thoughts out while you are healing!  My PA’s were not motivated to help me create a new communication system, since they mostly could understand my speech!

handbefore

My hand before the surgery,

Another angle

See the lump?

June 14th dawned despite my misgivings.  The doctor’s confidence that he could help me, gave me hope.  Even so, I was second guessing needing this surgery all the while they were prepping me for the surgery. For every protest I had, my sister kept reminding me how miserable I was November through January, and that I did not want to go through another season in pain!  I couldn’t argue that point.

The operation went smoothly.  It lasted all of four minutes.  My sister didn’t even have time to settle down in the waiting room before they were calling her back.  I was relieved the surgical team saw no need for a breathing tube during the surgery.  My recovery time was so much easier without it.  I was on my way home within two hours.

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Waking up after surgery.

 

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One bandaged hand.

Home from hospital.

Home and obviously in pain!

Having surgery meant for a period of three to four weeks I could not use my right hand, the hand I do everything with.  I could not type, wipe my nose or mouth, or use the TV remote. I could not readjust my left hand/arm when it contorted and cramped up, which totally was a pain, because sometimes I asked my PA’s to help uncurl my arm three or more times an hour depending on how agitated or uncomfortable I was. A few times, the PA would be busy helping my housemate; I just couldn’t take the pain in my left arm anymore, and I had to wrangle it back into submission!  Each time I did my “readjusting” I would imagine my stitches busting open, and blood oozing from the bandage, but in reality, such a thing never happened. The mind picture stopped me from doing this stunt often.  Instead, I would try to breathe through the pain.  It totally sucked not being able to pick at my nose.  Come-on, everyone does it!

It's about time to get clean

Lets get the stink off already!

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Bandage covered!

I needed a way to get my PA’s attention when I was in bed, or when I needed to get up.  A few years back I acquired a doorbell when I was sick, but it was useless in bed because there was never a good place to put it.  The night of my operation, I was in no mood to be messing around with the crucial placement of the doorbell.  In a flash of inspiration, I had my PA tape the doorbell on one of my throw pillows, and then I had her place the bell on my body pillow which I  keep as a barrier between me and the wall.  Necessity is the mother of invention, and my bell system worked for me.

With lots of time on my hands, pardon the pun, Hulu and Netflix were my best friends during my recovery period.  With their help I binged watched shows like; New Girl, Schitt’s Creek, The Good Place, and an assortment of my favorite movies.  Three or four episodes would run before stopping, and it was often timed where I had a meal or had to use the loo.  Miraculously, I was able to zone out, and gave my hand the rest it needed to heal.

Revealing

First time seeing the scars!

Free from restrictive bandage

Hand wigging out after being freed.

I got a little peeved when my physical therapist was shocked to find out I had not been using my hand after the stitches had healed.  I wanted to reply, “At my last session you said I shouldn’t use it.  Make up your mind already!”  At the same moment, I was mentally bringing my palm up to my forehead, thinking of course the stitches have healed!  You don’t have to be fiercely protective of your hand anymore!

If I hadn’t had an actual concern that the ganglion cyst was causing me pain, and therefore causing damage, I probably wouldn’t have sought out medical help. I thought the cyst was the cause of my pain.  When it was really the carpel tunnel that was causing all the pain.  Over six months later, and into winter nonetheless, my right hand and arm are relatively pain free.  Somehow I thought my having cerebral palsy would somehow work against the effectiveness of the operation.  I am happy to report that so far, it has not!

 

My Experiences with School Aides

I was asked awhile back to write about my experiences with school Aides, so  here is my viewpoint.

My school was 17 miles away from home.  A thirty-five minute drive in my family’s car. However, by school bus it was close to a two hour ride one way!

I went to a school called Holiday Center. The school was created for children who had physical disabilities.  The grades ranged from kindergarten on up to the sixth grade.  Normal classwork would be conducted; while individual students would be pulled out of class, and taken to therapy sessions. The therapies included Occupational Therapy(OT), Physical Education(PE), Physical Therapy(PT), and Speech. I loved PE because it was fun and games with my peers, plus I loved the teacher. However, the other three therapies I gradually grew to resent, because I didn’t much like keeping an eye on the clock so that I could leave a interesting class, to go to a labor intensive therapy session. I was always torn between classwork and therapies; both in which would eventually lend me skills I would need in the future!

Holiday was attached to a grade school. of which we had the use of it’s library, gym, and stage for Holiday’s school productions, (my favorite times of year).  Eventually, my class moved into  the school, so we could fully experience be emerged with other “normal” peers.

I haven’t gotten to the main focus of this post yet, which are school aides.  School aides were the backbone of Holiday. They were the teachers extra set of hands.  They kept the schedule running smoothly. They were also there to assist the students with their personal needs.  Such as helping with bathroom breaks, with lunch, helping us pick out library books, and goodness knows what else.

They became invested in their students lives. Often becoming a sounding board to their students . Once when I was convinced my parents were crazy for insisting I needed to get braces to straighten out my teeth. My school aide picked up something was troubling me, and got me talking. By the end of our conversation she helped me to see the benefits of the torture coming my way, and even how lucky I was to have parents who saw that I needed braces!  To this day, I’m grateful for the aides I had at Holiday Center, for they encouraged me every step of the way.

Maybe at times the school aids were a little too intrusive.  They were in consent communication with our parents.  They knew the contents in our backpacks, so no surprises ever could occur.  Above all that, I was convinced I was an old soul at heart, therefore I preferred talking to my aides and teachers, rather then most of my peers.  This lead to a social awkwardness I still struggle with today!

My biggest goal while at Holiday was to be “mainstreamed” into my neighborhood school system.  This dream only happened after I agreed to stay at Holiday an extra year; so I could be prolific at using the communication device that was determined I absolutely needed to be successful at my new school.  Which, in all honesty, I was nowhere close to being great at.  The device looked like a  calculator.  Every word, phrase, and letter had a three digit code I had to memorize.  It had a male robotic voice, that didn’t jive with me at all.  What was it’s greatest downfall?  It’s lack to store my own phrases, and school work.  If it had those two capabilities, I could have made it work.

My graduation speech should have tipped me off that the device wasn’t well matched to my needs.  I spent about two hours programming the speech into  my communication device.  I was keenly aware of  the fact that if the device were to be.turned off, the speech would be lost.  There wasn’t a lot happening in school that day, so I decided I needed a breath of fresh air, and went outside.  When I wanted back in; I waved  at someone to let me in, and that’s when my hand fell ceremoniously on the device’s on/off switch.  I swore my first blue streak, and ran to my speech therapist who quickly helped restore my speech just in time.

Interesting enough, my two school districts feuded over who had the rights to my device.   Mom calmly but  firmly said, “You promised my daughter she could go to her neighborhood school, if she had this device. She is taking it with her.  We will gladly return the device when she’s no longer using it!”  The battle was dropped.

After my first day at my new school, the second I got off of my quickest bus ride ever; I burst  into  tears.  It was the hardest day of my life!  I had what I wanted, going to the same school my siblings went to, having some of of teachers say, “Say, are  you so and so’s kid sister?”  I literately knew no one.  I endured stares, and awkward moments,  while finding all my classes before the horrid bell rang.  I wanted to give up, and go back to Holiday where everybody knew me, and felt like  family.  However, I could not give up with just one day under my belt!

I only had  an aide a couple of times during the day.  Both were in modified study halls, plus scheduled bathroom breaks.  The rest of the time, I relied on my peers.  They helped me with  getting my books  out of my backpack and to the right pages, taking notes for me, and handing in homework.  They even helped  feed me my lunches.  Knowing myself the way I do, I would have stopped eating the moment my classmates stopped.

I didn’t have a female version of Kenneth “Speechless” hanging around constantly to interfere with peer bonding, and that was priceless, and I wouldn’t change it for the world!  However, sometimes I felt like a burden to my peers.  They didn’t walk into school starting 7th grade thinking they would be volunteering to help me at different times during the next six years.  However, I’m so grateful some my peers were willing to help me!  Go, Canby Cougars of 1988!  You rocked!

P,S.  In my Junior year, I ended up giving the communication device back to Holiday Center.  Instead I opted for a laptop computer, and a little device that typed  out ticker-tape messages.  Both devices served me about eight, years until I begrudgingly admitted that technology had improved enough that I felt I could be successful at using.

Health Care: It Should Mean Something To You!

What does health care mean to me?  It means quality of life!  It means being able to go to the doctor and dentist when I need to. It means living in the home I do, and being able to have 22\7 personal assistant care. It means being able receive the tools such as my power chair,  communication device, eye glasses, strategically placed grab bars around the house,  shower chair, and manual wheelchair; all of these things make me as  independent as I am.

It was clear I had a disability from the traumatic birth I went through. The real question of just how disabled I was had to wait and be seen until I grew. However, the doctor told my parents that there was an institution called Fairview that I could go to. My parents didn’t give it a thought, and kept me at home.  All through my childhood my mom was able to get me the help I needed when I needed it. A contact of mom’s got me seen at Shriner’s hospital, Shriner’s sent me to Child Development and Rehabilitation Center, where I received my first physical, occupational, and speech therapies. I was born the year after the Higher Education Act of 1965, and that ensured that I received “financial assistance” for the special equipment I needed to get my education.

I believe that without my family’s support and the timely medical care I received early in my life: I wouldn’t be the person I am today!  I also know that if people are not personally disabled or are attached to a person whom who is living with a disability,  they may  not understand the importance of specialized health care for individuals who have disabilities. Be aware, be involved, be an advocate!

 

It’s Voting Time, Yeah or Ney

Here’s a little tidbit for the current voting haze of  today.

The last election, my vote did not count.  I know this because a month or two after the election, I received a letter stating as much.  They rejected my vote, because my signature was not the same as the one I used when I first registered to vote.  This was not news to me, as my signature is never the same  due to having Cerebral Palsy[CP}  Developing my own unique signature was never in my scope of functions.

I discussed this fact with the election’s officer upon registering.  At that time, it was acceptable to make my mark, and then have someone sign witness by, followed with their name.  i was never 100 percent certain if it had to be the same person who helped me register.  I assumed it wasn’t the case, since I’m never with that person; and they have actually moved out of the state.

When I got the rejection letter, the first thing that crossed my mind was that I wasted a lot of time studying the measures.  It takes detective work  to decipher any hidden meanings.  I think the  writers of the measures quite often try to make them sound so convoluted to get us to vote one way, when in reality if the measure was written clearer, there’s no way people would ever vote for half of what’s on the ballot.  Half the time I’m scared of voting for something I’d be opposed  to, that I almost would rather skip voting.

Then I was mad they rejected my ballot. i started thinking what if the person tallying my ballot didn’t like the way I voted.  What’s to stop them from looking for any loophole to discredit my vote. and found it in the discrepancies in my signatures.  My imaginary conspiracy theory is working overtime here.  I don’t know the rules for counting the ballots once they reach the elections office.  However, I do think that over time people’s signatures do change from a list of different factors.  In that vein, there should be an easy way to indicate rather or not someone is authentic, instead of rejecting ballots because there is a discrepancy.  So what if it takes an extra month to get everything sorted  out.

So, this election I am determined to make my ballot count.  One of my PA’s suggested I take my ballot to the bank I use, and have a notarization done on my ballot.  When we called to set up an appointment, they said they didn’t notarize ballots.  They suggested calling the City Clerk; the City Clerk suggested calling the Elections Office.

We completely flustered the Elections worker by explaining that my last ballot wasn’t counted because of a problem reading my signature, and I wanted to make certain  my ballot was counted.  She said something rather snarky like I needed a signature stamp.  She then hastily ended the phone call. [Maybe she just didn’t fully understand our question.]  We called her right back, and asked if I could go to the Elections Office, and sign my envelope in front of some credible person  there.  She basically said I needed update my signature  each voting period.   So, I will do that with no complaints.

If you find any ballets in this post, rather then ballots, know that I would prefer being at the ballet than blogging about ballots!

Story Time

i am in a reminiscing mood, and long time ago I promised to write about a vacation that I made my dad take. Oh, it is a great story!

My youngest sister and I felt cheated out of family vacations, not that our older siblings enjoyed many vacations, either.  Back when it was just the three siblings and a hitchhiker [Not me.} in mom’s womb, they went to Disneyland. I can only remember one family beach trip, including mom’s entire side of family. I was in seventh heaven being surrounded by all those people who loved me, in a new place!

My dad was a farmer, and a certified home-body. At family functions held in other relatives homes, after we had the meal, mom was lucky  she had a hour to enjoy relaxing with family before he started asking to go home. As soon as she consented, dad would whisk me, the easily to catch one, and we would wait a good half hour in the car before all of my immediate family would trickle out . I would sit fuming in the car until at least three out of the other five of the family unit showed up.

I wrote my dad a letter stating how my sister and I felt we were being deprived of family vacations!  I most likely used quips,  such as;  everyone needs a break from their daily life once in a great while. Seeing new scenery is good for the soul. The fact that it would probably be the last time my sister would be marriage free, and able to take a family vacation with us. And, I probably threw in the fact that only by leaving home for a certain amount of time; can a person really appreciate the joy of coming. Home again!

He agreed to something like a three or four day trip. I was happy for anything he gave us as long as we were away from home, and seeing new sites for at a couple of days!  Our destinations were Crater Lake, Lava Beds National Monument, The Oregon Wildlife Safari, and The Oregon Caves. All of this lead in stuff is really about The Oregon Caves!

At  the Oregon caves, which is a natural wonder;and not wheelchair accessible. Mom made special arrangements with the tour guide, to have my sister help me walk through the first three caves, then walk me out, settle me back in my power chair, then dash back to join the rest of the tour. I was left to entertain myself for an hour.

I was happy with the arrangement. My plan was to find a spot to read the book I was engrossed in. Just as I got my book open to where I left off, which wasn’t easy for me to do, one handed, and with my left arm being the paper weight.  Suddenly I was surrounded by yellow jackets. I was terrified, of getting stung!  I had to move!  I can’t believe I didn’t drop the book during the whole process, of which i had a 50 percent chance of doing.

Against my better judgement, I decided to go meet my family where they exited the cave. Which took me up a hilly path that had no railings. I specifically remember this because as I was driving up the path, I thought very calmly, that if a belt that helped turned the wheels of my power chair slipped off, I would be a goner! {Once when I was wheeling down the street in a kiddie parade; I suddenly lost all control of my power chair, and went careening into a ditch. At first, I was accused of horsing around until it was discovered that a belt had slipped off it’s track.}  Then just as calmly, I thought, I have had a good life up til now, if I die today, I have led a happy, rich life!  But life wasn’t done with me yet!

I drove on the inside, closest to the cave side and not the outer edge of the path. I was doing fine, but when other people came along I startled and that meant my hand came off of the power wheelchair driving control. When that happened my wheelchair would roll backwards a bit. There was this couple who decided that after seeing me startle and roll backwards, that I was not safe to be on the trail.  I did not have my communication device with me and only had my voice to communicate with. When I am with total strangers, I feel my tongue swells triple its size, making communication impossible.

I seem to remember, this couple spoke French, I knew they were upset with me.  They scolded me, and would not leave me alone, they hovered and talked about how unsafe I was.  It felt like I was being held hostage. My sister knew that I would be waiting, so hurried ahead of my parents to meet up with me. She came across the couple and attempted to defend me.  She said she trusted my judgement and driving skills and that if I felt I could do the trail, then she felt I could do the trail. She told them the chair would only roll a little bit if my hand came off the control. The couple had to tell her that I should not be left alone. My sister and I split when our parents came on to the scene, and the couple started in on them. I was steaming mad!  .

My sister and I had to pick up my manual wheelchair from the main lodge of the Oregon Caves.  To get me into a better frame of mind, my sister got into my manual wheelchair and wanted to race me to our van.  We took off in a frenzy, just as our parents and the french couple reached the bottom of the trail.  I’m sure the couple shook their heads, and thought, those out of control American kids!

Author’s note:  I used the Oregon cave story in a recent presentation.  I used my sister’s version, which was less wordy, and less effort to finish my presentation without getting stressed out.

Welcome to My World

I just want to vent a little about a frustrating aspect of my life, which is getting new equipmen i.e.  things that improve the quality of my life, such as wheelchairs, communication devices, grab bars and different things that help make my life genuinely easier

To get needed equipment I must first state to my doctor that I have certain medical need that requires new technology.   The doctor will then send me to an Occupational,  Physical, or speech therapist.  They then need to access my  needs and determine which piece of equipment would best fit my needs. Then its back to the doctor for a face to face appointment where they ask questions to fill out paper work that gives the doctor’s ok for that equipment.

Sometimes  I get to have a trial period with the equipment. I can’t express nearly enough how important the trial period is. Simply put, if an insurance company will fork out thousands of dollars for a recommended piece of technology, it only makes sense to “test drive” the device before purchasing it.  That way the equipment will be used, instead of collecting dust bunnies in some closet.

The next step is all in the therapists hands.  It is the therapist job to write a convincing report that states for the medical well-being of my client needs a new power chair The report would list why I need a power chair. If I was lucky enough to have a trail period with the equipment, the therapist may state “my client has demonstrated that she can  successfully use the power chair”. The occupational therapist sends the report to the doctor I asked for the referral, and the doctor sends it back signed to the occupational therapist, who then has to send it to the insurance company! if all goes well, the insurance company approves the request. if the request is approved, the new equipment will come, between one to six months later.

A person can get new wheelchairs and communication devices every five years. I have been due for a new power chair for about eight years. I had not pushed the issue because the chair was in fairly decent shape, and really hate asking the state for anything.  However,  the last few times I had my wheelchair serviced, I was told the chair was outdated; I could not get certain parts for the chair anymore!

So, I started the whole grueling process. I got the first three appointments finished, and  then I waited. Four months go by, I received a call from the place that evaluated me for the power chair, saying they never received the face to face report from the doctor. We played phone tag with the wheelchair company, both of us trying to get the Dr. to send necessary paperwork. After six months of not getting the needed paperwork, I again had to do a face to face appointment with the Dr. to have him sign the paperwork and give his ok yet again, to  please the insurance company.

True fact: I received my first power chair when I was twelve. I was away at summer camp when it arrived. My mom sent me a letter saying that I had a surprise waiting for me when I returned home!  When I got home, a party was in the works. One of my friend’s mom drove my new power chair up from our basement, and I finally understood the reason for the party. My power chair had at long last finally arrived! It was indeed something to celebrate! However, the joy of that moment became suddenly subdued, when I got into the chair, I had already out grown it. However, it didn’t stop me from exploring the barnyard, and getting stuck in the cotton seed pile, which is a kid magnet in my family! A quick adjustment at the wheelchair repair shop fixed the problem, and I was all set to find more places to get stuck in!

Here’s What A Little Insect Bite Can Do…

Gross, huh?

Gross, huh?

On March 21st, I found some sort of bug bite on my right thigh while I was getting my PJ’s on.  I didn’t think too much about it and went to bed.

The bite  progressively grew bigger through the weekend. I kept hoping the bite would miraculously go away by itself!  There was no chance of that happening, much to my dismay.  

The following Tuesday,  I finally caved in and had one of PA’s  make me a doctors appointment.  They offered me an appointment April 15th.  My PA said, “No,  she needs to get in sooner; she is in pain.” I got an appointment  for that next Thursday. 

By the time I saw a doctor, I not only had a spider bite the  size if a baseball, and because I didn’t see the doctor right away I had also contracted cellulitis. I received a prescription  for antibiotics and a stint of time with my leg elevated, and a ten  minutes with my heating pad every few hours.  the Doctor did warn me the infection would get worse before getting better .

The bite was effecting the way I moved about. Normally, it’s no problem moving around the house in my manual wheelchair, by using my feet to propel myself around.  However, with a huge abscess  on my leg, I didn’t want to move around any more than I had to, because it sure did hurt when my left leg rubbed up against the abscess. I used my power chair more. I had to have extra support when I needed to transfer from one seat to another. It bruised my ego to have help getting in and out of bed, but it was better than falling and hurting myself even worse!

The cellulitis plagued me more than the spider bite. When I sat up, the cellulitis became quite uncomfortable. So, I was driven to utilize my recliner. I caught up on all the shows I watch; like Bones, Castle, and Gray’s Anatomy. Then I became engrossed in, Call The Midwife, that I saw while prowling through the shows on Netflix. I’m forever grateful to my friend who suggested I invest in a Roku streaming device, during the many times I would complain of having to watch one too many commercials, and paying too much for cable. These days, I have to force myself to watch some regular TV, if for nothing else then to keep current in the world!

Getting back to The spider bite. Two days later, the bug bite looked worse. My sister was called to get her opinion. She took one glance at it and said, “I’m taking you to the ER!” I protested, but it fell on deaf ears. I had nothing to eat that morning, and in hind sight I should have insisted that I eat something first.

The ER doctor looked too eager to pop something! I thought the proper procedure was to lance an abscess, and then gently squeeze the puss out. Nope! He put both of his thumbs on either side of the abscess and squeezed! It was extremely disgusting! The abscess erupted like a volcano! A flow of puke green cottage cheese curds cascaded down my leg. Seriously, I wanted to kick the doctor in his sensitive place; it hurt so badly! My foot was in an excellent position do so. I didn’t, and I’m so glad I didn’t, because as soon as he was done with me a real emergency came in. I never saw him again.

I wasn’t quite done grossing out my sister for the day. Before the doctor left, he wanted me to take my second antibiotic of the day, but then he added another antibiotic and a Percocet to the mix. I was rather leery about taking medication on an empty stomach. The nurse suggested I could have a sandwich, but all she brought me was an applesauce, and a package of crackers from the waiting room.

Twenty minutes later, all bandaged and medicated up and on the way out to the car; I started feeling hot and dizzy. As soon as my sister started backing out of the parking place, I threw up on myself (It was my brother-in-law’s car so I needed to preserve my good grace to ride in it.) My sister had planned on taking me on a few errands, but she quickly changed her mind. I was okay on the straight road, but once we reached my little, curvy street I lost it big time, but since I didn’t have anything of substance in my stomach, it didn’t smell. I got home around three, and I finally stopped up heaving about nine. I felt absolutely miserable!

I have two pieces of advice for you. If you are unfortunate enough to be a target of a bug’s fangs and the infection is not getting better within, please have it checked out by a doctor Secondly, if the doctor insists you take a cocktail of medication before leaving (this will most likely only happen in the ER), if you haven’t eaten in quite some time, if you have a slight build, and you’re sure you won’t be whisked off to surgery. Do yourself a big favor; insist right back that you have to put something substantial in your stomach before taking the medicine. Anybody in their right mind would want to avoid six hours of nausea, right?