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)