Hell, Also Heaven

Hell is...

     knowing something isn't right with your body, and being told you're making it up.

     knowing what is wrong with your self, and people not believing you.

     putting on your best face, and people thinking that is your norm.  What you see is not the constant.  Ever.  Especially in regards to this disease.

     trying your best every day to get everything done, and not being able to finish.

     having to prioritize the bare minimum of household chores (laundry, dishes, picking up after yourself) and still falling short.



Heaven is...

     my son telling me I'm the best Mom ever, even though I'm sick all of the time.  (Direct quote)

     finally having a good day and finishing at least one chore!

     someone noticing when I get things done, even on a bad day.

     puppy kisses.  They never come with judgement.

     kitty snuggles.  Because it's love the kitty time, that's why.

     help I've gotten from FlyLady and my social media support groups.

     my niece telling me about her latest awesome thing.  From figure skating to her latest art project with her mom, its always fun and interesting.

     being able to help someone else.  Gastroparesis makes you a good listener.  Perhaps that's because we can't run away.  Ha!

      new episodes of a favorite TV show on Netflix.

     a morning when I wake up with pain less than a 5.  Some days its even less than that!  Not many, but some is always better than none!

     this kitten.

     seeing my family's random pictures of themselves, their kids, their pets.  Its important for me to see your lives, because most of the time I can barely participate in my own.  Yay social media!

     putting on a pair of pants and having them fit perfectly.

     those perfect pants aren't yoga, sweat, or pajama pants.

   

I am blessed every day I wake up.  I love you all!  Keep looking at the stars!

   

   

     

Today

I've just spent a week down.  In my cycles, I wake up one day, throw up until I pass out, am barely able to move for the next couple of days, and sleep.  This goes on for about 3 or 4 days.  Sometimes on the 5th day of mostly sleep, I wake up and feel brand new.  This time I've had a hard time pulling myself out of it.  A week in, and I'm sitting on my floor wishing I had more ramen.  I haven't been using my juicer and I'm pretty sure I've lost my magic bullet blade.  I've been cooking things down to where they are soft, but I can only take so much of that texture.  I want crunchy, salty, greasy, awesomely fatty foods!  I live in what now appears to be the arctic and I'm unconsciously trying to fatten up (not that I need it).  According to Weather.com it is now 11 degrees, but due to extreme wind chill it feels like -12 degrees Fahrenheit.  Fun fact - when I get cold my stomach starts cramping.  Guess what really doesn't help my cycles of angry tumminess?  Hahaha, funny.  The place I've lived my entire life is killing me.  I'm even allergic to all of the indigenous plants.  I want to go south, but not too far.  I need a place that stays about 65 degrees all year round, isn't too populated but has good schools with special programs for my mildly autistic son, and has either mountains or a beach.  I would like to stay in America, but I'm not opposed to going elsewhere.  For right now though, here we are.  I will say for the moment I am loving the extra root veggies and meats in season right now, I am currently boiling down a turkey carcass to make some stock.  Turkey and dumplings is awesome for us, as long as you watch the fat.  Turkey noodle soup, turkey and rice, casseroles, good stuff.  Holiday parties can be killer though.  I went to my niece's birthday party with pizza and ice cream cake (my very favoritest in the wide world) and I totally made a pig of myself.  I'm not paying for it as much as I had feared, thank gawd.  It just feels like a continuation of the last week.  I've noticed with this disease that it is impossible to tell if you have the flu, a cold or a bad gastro day.  So much of the time, at least for me, the symptoms are so much of the same. 

On to a better tomorrow!

Back

I'm back from hiatus.  Sometimes doing this blog is really hard for me.  It makes me focus on my disease, and sometimes I just want to pretend it isn't there.  Or that I'm on a fad diet and I can quit whenever I want to.  This time of year can be especially painful, not just because of the food.  Oh ridiculously delicious holiday food, my tummy hates you but I love you.  The cold is another problem.  I'm not sure if this is true for everyone, but the extreme cold makes my stomach cramp.  I look like nanuk of the north when I go outside, but it doesn't always help.  Granted I live in a very cold climate and need to move, but that isn't in the cards right now.  Ahhhh, well.  As it is I've been faced with the Gastro monster this week.  I haven't had a flare up (as far as I can tell) but I've got a cold, which is so much worse than it was before I got sick.  Some days I really don't know where to turn with some of this, and it can be hard to handle.  Not just the way it affects me, but it affects my family too.  This just seems like I'm pushing a boulder uphill but the hill goes forever.  But here I am, trudging along.  Sorry I'm such a negative nancy this week, just so beat down sometimes.

Update - Disability

I've had a few good days and a lot of bad days.  My whole body seems to rebell at the idea of me being able to function but I can't let myself become catatonic.  Depression and stress have done a good job of helping me cripple myself.  I try to push, to do things my body used to do effortlessly.  I used to be able to go for 3 days with no sleep just finishing a project, no drugs except caffiene and nicotine involved.  Now, I can barely stay awake for long enough to take care of my 6 yr old.  I keep thinking "I can do this, I'm better than this."  and I'm just not.  My sheer force of will is not enough to sustain me and I feel almost dead inside some days.  I used to be so powerful, what happened to me?  Then I remember, my life has changed.  Since that time, I've loved and lost then found love again, had a child, and aged 10 years.  Sometimes it feels like just a month ago.  I was distracted going home and found myself driving to a place I lived 8 years ago.  I wonder sometimes if it's the disease or the fact that I've lived in the same town for my whole life.  I feel myself being choked.  It's a bit like realizing your whole life has been lived in a box and you just realized theres a lid.  Or someone tricked you into a box and you didnt know there was a lid.  I want to scream and scream and scream until my eyes bleed but it wouldn't help.  This can't be all bad, right?

So onto the update.  After the doctors told me this was irreversible and there were no real options, I didn't know what to do.  They suggested that I apply for disability, and I didn't want to.  I was convinced the Gastroparesis would just magically go away and I could go back to my life, my job, and my future.  Instead I got sicker, and sicker.  I'm in the process of applying now, and I'm doing my best to accept my new life.   It's hard for me to go from active and always doing something to... nothing.  Or different things.  *Sigh*  Acceptance of sucky stuff is awful.  Blah.

I hate my stomach

Feel awful today.  I've felt awful for about a week now.  My stomach looks like I just went rounds with a buffet and feels like i ate a lead weight that is trying to push its way out through the front of my stomach.  I've been following my diet with only minor slipups. I haven't really left my house in 2 weeks because of the pain.  I'm just so worried I'm going to get somewhere and not be able to leave.  Throwing up, extreme nausea and dizziness hit me so fast it scares me.  Any one of these can cause me to need to at least sit for a half hour to let it pass.  Not good at the mall by yourself.  I feel like a housepet.  Or plant.  When I do finally feel well enough to do anything I have to spend my whole day trying to catch up on housework and life.  Bah.  Then the cycle starts over again.  I tried looking for a job but nothing has panned out.  It is hard to find work when I am sick 4 days out of 7 in a good week.  I am finding the good things in my life are better than I could have imagined.  My 6 yr old son has taken the fact "Mom isn't fun anymore." Really well.  He helps out a lot and understands that sometimes its movie day all day because Mom cant get off the couch.  Or fell asleep again. The shining star has hands down been my boyfriend.  We were together less than a year when I got the diagnosis.  Once I knew what I was dealing with I gave him the option to walk away with no hard feelings.  Its hard to choose to be with a person who will be unable to be fully functional probably forever.  But he refused to leave.  He still wants to marry me and promised that we would get through this.  I'm still sick and he's still here.  Sweet.  This probably sounds stupid but my pets have been a great sense of comfort to me also.  I have 2 old lady cats, 2 cockatiels and fish.  Life is weird and sometimes Iwonder how in the hell I got here.

Continuation

My tummy hurts.  It hurts all the time.  My doctor says I have an issue with my stomach nerves.

Issue of the day - Stress

Stress.  We all know it can cause some major problems, but did you know it can cause Gastroparesis?  It also can aggravate the symptoms to the point you would think you had eaten half a pie and a bunch of celery.  Huge nasty angry tummy time.  Speaking of which, when I've been eating more solid foods I've been taking Schiff brand Super Enzymall.  It has been helping a lot to break down foods.  Also, make sure you do some light excersize after eating, like a walk or yoga.