Posted in Center for Courageous Kids, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Gastroparesis, My Life, New Doctors

Abducted

No, I’ve never left Earth and I’ve not seen UFO’s or aliens.  I hope that doesn’t disappoint you.  Abduct is defined in Webster’s dictionary as “to take away from a place by force.”  At this point in life, I felt I was being abducted and held hostage by my own body/health.  I felt I was imprisoned in my own body.

I was having unexplained symptoms, medicine wasn’t working, and I wasn’t sure how much more I could take.  Finally, I realized that medicine wasn’t helping because I was vomiting it back up.  For the past several years, I had limited my diet…trying to keep from vomiting.  In the meantime, I was still vomiting several times a week for unknown reasons.  I thought it was probably just a combination of acid reflux and food intolerance.  However, my pain management doctor suggested I return to see my stomach doctor to see if something else was going on.  My life seemed to be going crazy…little did I know what the next few months would hold.

Around this time, I had to deal with a loss…my best friend passed away.  She was like a big sister.  She and I both had medical issues and seemed to understand each other.  We had assisted each other in teaching Vacation Bible School at the church we attended and enjoyed visiting with each other.  We had a lot in common.  I miss her greatly, but know she is gone to a better place.

A few weeks later, I returned to the gastroenterologist I had seen years before who thought my stomach was emptying slow.  He began by scheduling a scope to look at my esophagus and stomach.  For anyone reading this with a weak stomach this is your fair warning that this post is getting ready to get gross… this is your warning… graphic descriptions and stomach content images coming soon.

 

 

Are you sure you want to continue?

 

 

You still have time to turn back.

 

 

This is your last warning.

 

 

If you are still with me, I’m assuming you want to know more.  If you’ve never had a scope of your esophagus and stomach before, the only preparation is that you can’t have anything to eat or drink after midnight the night before the test.  I had dinner the night before around five.  Before bed, I vomited up dinner…or at least some of it.

I went in for the scope the next morning and they were able to do the scope just as planned.  I woke up afterward and the doctor came in to talk to me.  I was still a little groggy.  When he asked, “Have you been eating carrots?”  I responded, “No, I’ve not had anything since midnight.”   He laid a picture taken of my stomach during the scope in front of me and explained that although I hadn’t eaten in over twelve hours, there was undigested food in my stomach.  That’s when I realized, “Oh yeah, I had pasta salad for dinner last night at five.”  It was pasta with slivers of carrot, peas, bacon pieces, and ranch dressing.  Here in front of me laid a picture of my stomach still holding the contents of the dinner I had eaten the night before.

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The doctor explained that it appeared my stomach wasn’t emptying, so he scheduled a gastric emptying scan.  The gastric emptying scan showed that food that should have emptied from my stomach in 90 minutes was still there four hours later.  The doctor explained that this was why I was vomiting almost every time I ate.  He referred me to a motility specialist that he considered the expert in taking care of slow digestive tracts.

I called my pain management doctor and left a message stating that I had been diagnosed with gastroparesis and asking for an appointment so we could discuss my next steps in pain management.

When the doctor’s office called a few days later, the news they had basically put me into a state of shock.  The voice on the other end of the line said, “We received your message saying you needed an appointment.”  I was pleased they had returned my call so quickly.  Then, the next sentence came.  They informed me that my doctor had passed away unexpectedly  and since he ran his own clinic, the clinic would be closing and I would have to find a new doctor.  In the meantime, they told me I needed to follow-up with my primary care.  All I could say was, “Thanks for calling.”  I hung up the phone and burst into tears.  I had been a patient of this doctor for just over ten years.  He had listened and cared, when no other doctor seemed to be doing either.  He had become like family.  Finding a replacement was not going to be easy.

I went that very day to see my primary care.  I knew with my neurostimulator I needed a doctor who treated patients with neurostimulators.  My primary care referred me to the clinic where I had originally met my doctor that had just passed.  The waiting time for new patients was over six months, so we looked for another doctor.  However, we didn’t find one so I ended up waiting the six months to see a doctor at that clinic

In the meantime, while I waited for that appointment, life went on.  The very month that my doctor passed away started out as a nightmare, but turned into a magical fairy-tale dream.  I had heard about a camp for children with disabilities.  I contacted the camp to see if they knew of any similar places for adults with disabilities.  I explained that I was a physically challenged adult and I was looking for somewhere to take my nieces and nephews, where they could have fun and I would be medically safe.  My eight year old niece was realizing that I couldn’t do many of the things they do and I wanted her to see that there were still things we could do for fun even with my challenges.  Well, I wasn’t expecting the response I got.  The camp contacted me and invited me to bring my family to camp.  I didn’t really know what to say.  I hadn’t imagined they would invite us and I hadn’t even mentioned it to my family.  I cried trying to tell my family about it.  It turned out that my brother, his wife, their two kids, my youngest sister, and I were the only ones able to go.  I filled out the paperwork and we started making plans.  The family weekend we were invited to attend at camp was about two weeks after my doctor had passed away.  I needed a break from reality…something to lift me up…but I didn’t know what to expect.

My anxiety all faded away though when we drove into camp.  The camp was called The Center for Courageous Kids.  It turned out to be a perfect weekend.  The staff was friendly and caring and the facilities were clean and accommodating.  The weekend we were there was a weekend for children with physical disabilities.  Although many of the children had disabilities that required wheelchairs and  walkers, they were all happy and having a blast.  They were getting the summer camp experience kids without disabilities experience…everything from arts and crafts, to swimming, fishing, bowling, arcades, archery, woodworking, beauty shop make-overs, and horseback riding.  It was all structured in a way that even the most physically challenged could take part in all of it.  Unlike many of the places I’ve visited in the past couple of years, it was possible to go anywhere you wanted at camp and do everything…even if I was in a wheelchair.  I was encouraged and uplifted by the courage and strength each child and family I met there had.  I thought I was taking my niece to camp to show her that my physical challenges don’t have to keep us from enjoying life together.  However, I must admit that the experience turned out to be more than I could have ever imagined.  It changed me…it changed my outlook on life.  To this day, it’s hard for me to talk about camp or even sit and think about the experience without getting teary eyed.

The camp is a nonprofit and relies on generous donors to make this experience possible for sick and disabled children and their families free of charge.  The fact that so many people care enough about children living challenging lives and want to make their lives a little happier amazes me.  If you would like to help make this a possibility for future children, donations can be made here.  If my opinion counts for anything…I think CCK is probably the happiest place on Earth for children living with illnesses they don’t understand and can’t control.  If you are the parent of one of these children who courageously face each day of life with the many obstacles they have to face, I would urge you to check out CCK.

Returning home from camp was kind of like waking up from the best dream you’ve ever had and being disappointed you woke up.  Reality came flooding back.  I now knew what was wrong with me, but invisible illnesses are hard to understand and even harder to explain.  I now knew I had complex regional pain syndrome and gastroparesis.  However, I was awaiting doctor appointments with new doctors for both and didn’t know what to expect.  Although my family is very supportive and wants what was best for me, it’s hard to understand what these two diseases are like if you’ve never had them.

I saw the new doctor for my stomach a few months later and they wanted to repeat tests and get their own results.  They found that in four hours, my stomach still contained seventy percent of what they had given me to eat.  They gave me several options to think about as possible treatments.  The two main treatments they talked about were medicine and a gastric stimulator.  They gave me information to read about both and scheduled a follow-up appointment.  I knew either treatment would be a lifetime choice.  We had tried medicine already and it hadn’t worked.  The stimulator had a trial period where you could see if it worked before they surgically implanted it, so I decided to give it a try.

Last year, the week before Thanksgiving, I had the trial wires put in to see if t would work.  With the trial, they run the wires through your nose, down tour throat, and into your stomach.  They attach two wires, one toward the beginning of the stomach and one toward the end of the stomach.  Only one can be plugged into the battery, which is worn in a bag on a clip outside the body.  On Friday, they told me I would have the wire toward the end of the stomach plugged in.  If it didn’t seem to be helping by Monday, they wanted me to unplug that wire and plug the other one in.

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It really didn’t look as bad as you might think.  It was uncomfortable though.  I spent the weekend gagging on the wires.  When I would swallow for any reason, I had pain in my nose.  Speaking of noses, this was the first time anything had been put up through my nose and left there and it wreaked havoc on my sinuses.  I used several boxes of tissues that weekend.  As for how it worked, I couldn’t tell that the first wire was doing anything.  I changed to the second wire Monday.  Unfortunately it was the week of Thanksgiving and the office was going to be closed Wednesday, Thursday, and Friday, so I had to go back Tuesday to have it taken out.  I only had one day to decide if the second wire was helping.  I didn’t vomit as much Tuesday, so I thought maybe it was.  However, I wasn’t confident enough to have a permanent one put in.  The doctor said that the emptying test they did just before removing the wires did show some improvement and they would like to do a repeat trial to see what happens if it’s left in longer.

In between my appointments with the stomach doctor, I had an appointment with my new pain management doctor.  I dreaded that appointment.  My leg is sensitive to touch because of the CRPS/RSD and I dreaded the pain of new people having to look at my leg and foot.  I was pleasantly surprised to find that I only had to see one doctor, not a team of doctors.  This new doctor was understanding and took time to listen.  He had my previous records from when I had been at the clinic before and the records from the doctor I had been with for the past ten years.  He knew my medical history and seemed interested in my entire medical situation not just my pain.  His other appointments had canceled that day, so he spent hours talking to me and getting to know me and my medical history.  I was pleased to find another doctor who cared and wanted to help me.

When I returned to see the stomach doctor, I wasn’t sold on the idea of repeating the trial.  It had been a painful and uncomfortable experience.  My mind was asking questions like, “it didn’t help this time why would it next time?” However, I didn’t want to live the rest of my life starving, so I gave in tried it a second time.  I must admit, I went into the second trial with a negative attitude.  I didn’t even let myself hope it would help, because I didn’t think it would.  However they started with the wire at the top of the stomach that time and much to my surprise, the vomiting lessened.  With the wire in that place the stomach emptying study showed that my stomach was still delayed or slow at emptying, but at the end of four hours it only contained thirty percent of the food, where it had been seventy percent without the stimulator.  This was enough of a difference that we felt it was with going ahead with a permanent placement.  However, I couldn’t get my hopes up because the insurance might not approve it.

It was now the beginning of 2016.  My body had been abducted by health issues, but I felt like I was taking back control.

 

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