I miss being normal

I spent the day yesterday preparing for going to Scarywood last night.  I stayed in bed and took it as easy as possible, knowing i would need the energy for later.  As i stood in line for hours, and walking across the entire park, getting scared etc, I was in a lot of pain.  I managed to stay warm, wearing 3 shirts, a jacket, scarf, a sweater and rain coat, and two pairs of pants, and dry thanks to a large umbrella, so i didnt get very sick.  But my legs got weak and sore standing in the lines for hours.  As I stood in the lines, trying to distract myself from the pain, I looked at others my age.  Perfectly healthy, having no problem standing in a line for that long, and they probably were busy all day doing other things that take energy and effort.

I rode the roller coaster backwards.  It hurt so much I started crying, and when it stopped I did everything
I could to hide the fact i was in pain and pretend I enjoyed it.  I've ridden roller coasters before, even while sick, and have never experienced that pain.  I can't even describe it, it was like all of my insides were getting slammed together, and breaking, and i couldnt breath and it hurt.  I thought something was ripping inside of me.

I miss being normal.

The Spoon Theory

I just read a blog of a fellow person with an "invisible illness". She has come up with a great way to describe how it really is to be me. How I live my life day to day. If you want to read it in her words, go here.

I'll summarize it here. Imagine you have several spoons in your hand. You start out each day with that many spoons, depending on how you used those spoons the day before, you may have more or less spoons to start with. Now, you may choose to use those spoons for whatever you want, but keep in mind, if you run out of spoons, you are out for the day.

Now walk yourself through a typical day. You get out of bed, shower, choose clothes to wear, change into those clothes, go to the bathroom, walk to kitchen, find something for breakfast, make breakfast, eat breakfast, clean up after breakfast etc.

Each of those things take spoons. By the time you reach dinner, you have one spoon left. If you make dinner, you cant eat it. If you eat something already made for dinner, you cant clean up after, or do any other activities. This is how every day is for me. I have to decide how to use my "spoons".

It's even more difficult with a child and husband and house I have to take care of. I need to be sure they have food to eat, the house is livable, and that they get the attention they need from me to be nurtured and cared for.

Personally, if I use all my "spoons", that is when i start getting a flare-up. I lose all energy, I can't do anything, I get really cold and start shivering (even if its 90+ degrees out) I get really nauseas, and if i dont lay down and rest right away, I start vomiting and it all goes down hill from there, not recovering for atleast 3 days (unless I go to hospital, they can help me recover quicker).

The days I'm feeling the best, and start out with a good amount of "spoons", are the days after I am able to actually eat more than just a little. Most of the time, I can hardly eat anything, but there are rare days that i feel well enough to eat, and it helps give me more "spoons".

Each person deals with their illness differently. This is just examples of how I deal with mine. It's difficult, but it's my life. I do it everyday, so it doesn't seem as hard to me, because it IS my "normal" and it's been so long that it's hard to remember not feeling this way.

Miracles

I already accepted I might die from this, but I really wasn't accepting it.  Till yesterday.  I really thought there was a chance I wasn't going to make it.

When I do too much, I end up getting a flare up.  If I push myself too much, wear my body down, it decides to stop working, and makes me feel so much worse.  It mostly happens when I go out to do activities, walking around too much, too much excitement or anxiety, not enough sleep, so many things can cause it.  With the cold weather, I have discovered if I don't bundle up well enough and get cold, that makes me sick too.  Probably because my body exerts itself trying to keep me warm.

All day Sunday, I was prepping for a colonoscopy procedure to be done Monday.  This required "cleansing" my colon.  It wasn't fun, and I could tell I was getting dehydrated, but I was feeling so nauseas drinking the medication given to me every 15 minutes, I couldn't keep anything else down.  It was hard, but I felt ok when i went to sleep Sunday night, so I figured I wasn't too dehydrated.

When I woke the next morning, I could tell I was wrong.  I could hardly get up, when I did, my heart started to race like I just ran a mile.  I felt dizzy, nauseas, and really weak.  Everytime I moved, my nausea got worse.  I asked my husband to help me get ready, including to shower.

When I got in the shower, my legs went weak, and I couldn't hold myself up, my husband had to hold me, while i tried to shampoo my hair, but when i raised my arms, they went numb and weak and then my legs gave out altogether.  I passed out, and just sat in the bottom of the shower for a while, wondering if I could even get the strength to make it to the hospital.  I finally managed to rinse my hair of the shampoo already in it, giving up on anything else, and laid down on my bed (with the help of husband getting me there).  He then called the hospital and talked to the nurse that would be helping with the procedure.  She said if I was bad enough, they would give me fluids, but to bring me in and there were no guarantees.

Husband helped dress me, my mom showed up to watch my daughter, and so we left.  Walking/being dragged out to the car, i started vomiting.  Now I knew I was really sick.  My heart was still racing, I was going numb in my arms and legs randomly, and I was dizzy, weak, and vomiting.

That's when I realized, if I didn't get fluids in me, and start feeling better soon, my heart would give out when given the anesthesia.  I was very out of it, but I made sure to text the people I'm closest to, to tell them how I felt, and what to tell others if something happened to me.  It sounds kind of dramatic now, since I'm o k, but at that time, i was really scared I wouldn't make it.

When I arrived at the hospital outpatient center (still being dragged/carried by my husband) the person to check in immediately told me to go sit down, because I looked way too sick, she even insisted I go in another room where there was a bed, but i didn't think i could walk that far.

Finally I was called back, and the nurse decided I needed fluids.  My husband stayed by my side the entire time, even though usually they are told to stay in family waiting area.  He even waited in the operating room with me till right before they put me under.  I think he sensed something could happen to me also.

When I woke up, I was really exhausted, but i felt so much better, and managed to keep some juice down, and some sandwich later.  I think they gave me plenty of fluids.  It probably saved my life.  Not to mention the priesthood blessing my husband gave me.  A Miracle.

my dr appt

I saw the dr today, finally.  For the first time.  One thing that annoys me is having to describe every single  symptom every single time i go to every appointment, to every nurse, physician's assistant, and doctor, not to mention those people that run the phones that just leave messages for the nurse etc.
It was great to finally tell the dr everything in my own words.  Apparently he hardly knew much, besides the actual files that had test results.  After hearing everything, he thinks there is a possibility my gastroparesis could not be my only problem, or it has caused other problems, or something else has caused my gastroparesis.
There were a few different options we could try.
One was to take tests to look for anything else, just to be sure I'm healthy everywhere else, that nothing is causing my GP, etc.
Another was a medication that would turn off some of the bile fluids going through my system, because after my gallbladder being removed, it could cause those problems.  The issue with this, is this medication is just like straight up fiber, it is hard to digest, and i have to drink a TON of water with it, so it would make it hard for me to eat something for a while before or after taking this medication, and since I'm only keeping down 600 calories on average as it is, that could be a real problem.  Especially since its experimental, and may not make any difference.
The last option is to take a medication that covers up the symptoms, right now I'm taking phenergan for that (anti-nausea) there is also reglan, which causes some serious side effects and he is against it (especially with the lawsuits going on).  The other medication which usually works best with the least amount of side effects isnt available in the United States because of greedy politics and FDA things.  Because I live so close to Canada, he can still get it for me (yay!).
We decided because project access will run out soon, to take all the expensive tests and get that out of the way, and then start working medications etc.
So in two weeks I am getting a colonoscopy.  I will also be scheduled for a pelvic/abdomen ultrasound as soon as project access clears it.  I also have blood and bowel tests (not scheduled, thats just walk-in by convenience) to check thyroid, endocrine, and many other things.
I'm getting kinda sick of tests, but I'm willing if it means there may possibly be an end to this suffering.
It gives me hope.

effects on my family

I'm not the only one suffering because of Gastroparesis.  My family suffers greatly too.  I am a stay at home mom.  Before I was sick I baked something atleast once a week, made dinner almost every night, and managed to keep the house tolerably clean.  I was able to do anything and everything I could for my daughter, and give her what she needed.

Now, everytime I stand I get dizzy.  I have no energy, and if I push myself too much my body wears down, I get really tired, and I start to get sick.  I start shivering (even in 90+ F degree weather) and feeling nauseas, and the only thing that makes me feel better is to take a phenergan, wrap up in some blankets, and sleep.

Lately I can do less and less.  I tried to make cinnamon rolls for my family.  It should be fairly simple and not take too much effort.  Throw the ingredients in bread maker and wait.  Roll dough out, spread filling, roll up, cut up, and put in pan and wait to rise.  Throw in oven and bake.
After rolling the dough out, I felt so sick and nauseas I couldnt even enjoy the smell of the cinnamon rolls baking.

This happens with other things too.  Going to Mt. Spokane on labor day to walk around and enjoy the view (I even tried to take it easy but still felt sick).  Making a simple meal like lasagna.  Meeting friends at the park to let my daughter play.  All of these have caused me to feel sick.

I cant do things for my daughter that she wants me to do.  When she is hungry she knows she needs to feed herself, she is only 3 and already taking care of herself.  She ends up bringing me all the ingredients for the food, so I can sit and make it for her without getting up and getting sick.  Lately when she is hungry and doesnt want to get the stuff because it is too high or too heavy, she makes the excuse "my tummy hurts".   She gets that from me.  I tell her sometimes I cant do something for her right then because I'm too sick.
She also offers to bring me a garbage can everytime I look sick, and is constantly bringing me gatorade.

I never wanted my daughter to have to grow up like this, taking care of me and herself. I just want my life to go back to normal.

But it never will.

tired

i havent done the daily diary because i had another flare up.  It was miserable, as always.  I've gotten very little sleep, felt completely exhausted, have eaten almost nothing, and no matter how much gatorade and juice i try to drink, i still feel dehydrated.  The headache, fatigue, and dizziness tells me so.

This morning on the today show a segment was done on a girl with gastroparesis.  They made it seem like some rare disease that almost no one gets, and that once diagnosed, all the girl needs is a simple surgery with a pacemaker put in and she's back to new and can eat whatever she wants.
Not true.  Ofcourse the media has to twist it to make it a happily ever after story.
Then, in the same breath, they go to the next segment, on food.
How tasteful (sarcasm and pun in one- give naomi credit for pun)

daily diary

today i am still nauseas all day, but trying to eat.
i managed half an ensure
a couple bites of italian creamy chicken with noodles (mostly just noodles)
a couple bites of cobbler
one bite of a baked potato
after the baked potato i felt very sick, im sure im about to get another flare up tonight.
hopefully the phenergan i just took will stay down.

daily diary

catching a cold, so i took it easy today.
food:
ensure
little bit of soup
some noodles with creamy italian chicken

daily diary

last night i actually felt ok and was able to fall asleep without needing anti-nausea drugs, I woke with a terrible stomach ache that kept me from eating, or even really doing anything.
I spent the day walking around (newly remodeled school) and got really exhausted really fast.  I didnt eat anything till after.
food:
little bit of iceburg lettuce with baby tomatoes (bad idea but it looked good) with italian dressing
chili mac
raspberry lemonade.

i dont know the calories, but i doubt it was much.  I did terrible today.
Tomorrow I am going to aim for 800 calories. Hopefully I will feel well enough to do it.

daily diary

Last night I was completely nauseas, and took phenergan.  Took forever to finally fall asleep because I kept dry-heaving, but managed to sleep.
Slept- 7 hours
Ate-
half an ensure- 75 calories
peanut butter and honey on white bread-175 calories
gatorade- 80 calories
total: 330

My Brain on Sick

When I get a "flare up", that is, when I start vomiting like none other and wish death would finally just come to take away the misery, my brain becomes only half-coherent.
It doesnt connect things together the way it normally would, its like I am in a dream state, though I am still awake.  I'm aware of what is going on around me, but I start having hallucinations and strange thoughts go through my mind.
Usually the vomiting starts in the evening for me, so I spend that time in bed, with my head leaning over the side into the garbage can.  I can't get comfortable any other way.  I feel extremely nauseas, on the verge of vomiting if I am not over a garbage or toilet, but as soon as I reach the toilet or garbage, the nausea isn't as strong.  It's more comfortable in a bed over a garbage then leaning against a toilet, so that is where most of my vomit takes place.  I always have tissue, water, and anti-nausea pills ready on my bed stand, because I never know when my flare up will happen.

So step by step of what happens during a typical flare up.  I begin to feel extremely nauseas, on the verge of vomiting, and just the thought of what is about to come drains me of any energy.  I go to bed, laying on my side.  I prop my pillows so my head and shoulders are propped up, and on the edge of the bed.  I make sure garbage is below and i rest there.  I take a promethezine if I think I can keep it down, but usually swallowing that is what brings on the vomiting.  Between vomiting, , my brain becomes completely muddled, and I cant tell if I am drifting in and out of consciousness or not.  Its like when you are sedated, except you are having extremely vivid dreams that don't ever make sense (ever been pregnant? those kind of dreams!)  I chalk it up to my misery and dehydration.
After several long hours of vomiting every 20 minutes or so, I am wishing I could actually rest and fall asleep.  I keep drifting asleep, but once I actually fall asleep, I am woken with the urge to vomit again.  This lasts usually till early morning, till I get so dehydrated (probably should be hospitalized but no insurance) I literally pass out because I am just too weak to go on.
When I wake the next morning, I am usually extremely weak, but I feel well enough to get down the promethezine (phenergan, anti-nausea pills) and some small sips of gatorade, and start the process of rehydrating myself, sleeping/resting, and just over-all thanking God I survived another night, despite the prayers of wishing it all would just end.

Want to know a secret?

I keep getting this feeling, that my days are numbered because of this illness.  I'm not sure how long I will last, but I cant imagine longer than 20 more years.  Perhaps not even more than 5.  I don't tell anyone, because I want to stay positive, put on a strong face, and not worry others.  I can feel my body getting weaker every day, and it's the only thing that is ever on my mind.
Once the project access program stops, that's it for medical treatment for me.  No more medications, no more doctor check-ups or tests.  I'll be back to square one, of suffering constantly.  Like I am right now, and if i dont get treatment soon, with how I am going right now, I could be dead within months.

My hair is thinning out.  My body has no fat.  My muscles are wasting away even, they seem to hang off of me now.  My ribs and pelvis bones are sticking out.  I have no energy.  I rarely eat.  Every time I stand up, my vision blurs/blacks out, my knees go weak, I get extremely dizzy, and sometimes I even pass out.
I weigh less than I did in high school, and people thought I was anorexic back then.  I weigh 25 lbs less than I did when I was married, and I know I looked my best at that time.

I'm going to die.

My Story

I have gastroparesis.  I havent officially been diagnosed yet, i havent discussed it with my doctor, but i took the gastric emptying test, and the results showed i had delayed stomach emptying.
I dont really know how long I have had this illness, perhaps my entire life.  I remember growing up feeling nauseas quite often, not wanting to eat, and even getting the "stomach flu" more often then most people.  I didn't think anything of it because it was normal for me.  I couldnt remember not getting sick.
I finally realized something must be wrong with me around Christmas of 2009.  I had gotten sick before thanksgiving, and then again on Christmas day, spending them in the ER due to dehydration from extreme vomiting and nausea.  I had been to the ER several times before in the past year for the same reasons, and it finally hit me that it's not possible to be getting the flu that often that close together.  The doctors never did testing, they just sent me home after getting some fluids and anti-nausea meds in me.
Back in 2007 my gallbladder was removed, so i knew i had digestive problems from that.  I blamed my illnesses from my childhood on that even.  I was wrong.
Once I realized I was sick, I decided despite not having insurance, that I really needed to see a doctor.  I was getting these vomiting episodes more and more often, and was constantly nauseas, losing weight, and could hardly eat anything.  I finally heard of a program called "project access" that consists of many doctors willing to see you for free.  The only problem was that you needed to be referred onto the program already having a diagnoses.  I found a low income clinic and went there, where i was referred to see the same dr that removed my gallbladder.  He recommended an upper endoscopy (putting a camera down my throat to view my stomach and esophagus) and referred me to project access.  Problem was there was a 3 month wait.  So i waited.  After 2 months of getting worse, fear of death, and extreme weight loss i took matters into my own hands and contacted both the dr office and project access and told them how severe my illness was.  The next day I was scheduled for the upper endoscopy.  Nothing was found except GERD.  They tried to leave me at that, saying i got a diagnoses and were going to give me a prescription to prilosec, when i cried "no way!".  I finally convinced the woman on the phone from the dr office to actually discuss my case with the dr and see what he says about my symptoms.  I then received a call to set up an appointment for another test.  A gastric emptying test.  It is where you eat something laced with radioactive dye, and they take pictures of how fast it is digested through your stomach.  That resulted in my diagnoses.  The problem is that i was diagnosed weeks ago, and have yet to see the doctor.  Why?  The dr is scheduled all the way out to mid-september.  I'm guessing it's more because they are doing everything for free, and gastroparesis treatment is constant, and expensive.  Meanwhile, the advice is to eat "small, frequent meals".  HA!