Ange's Got Moxie

Are you a strong person who refuses to give up or give in? Are you a patient or caregiver? I've been and still am, both. This blog is all about my journey. I also love life in the country and love to laugh and try to see things with humor.

Wednesday, November 28, 2012

Death by . . . Gramma

Death by . . . Gramma?

I have joked for years that if I am found dead in bed one morning, don’t assume that I have had some kind of heart attack or blood clot.  No, first thing you assume is manslaughter.  Not first degree murder because my husband will have been soundly asleep when he killed me.  He runs, fights, talks and all kinds of things in his sleep.  More than once I have been awakened by him half sitting, adjusting his pillow and laying right back down on top of me, pillow on my face or head.  Manslaughter, I tell ya.

My mother-in-law is also subconsciously trying to kill me.  What is it when you didn’t really intend to kill someone but you should have known better?  Reckless homicide?  That’s what the call will be.   It’s been going on for a while now so maybe we should up the ante.

Since my colectomy Gramma has asked me quite a few times about my diet and what I can and cannot eat now.  I’ve explained many times but the vegetables really seem to elude her.  Things getting stuck in the stoma and/or not digesting fully when you have no colon is really hard to absorb when you don’t see it firsthand.  I keep answering her questions and remembering answering my own Grandmaw all those years ago when she asked me every day after school “who my teacher is this year.”  Gramma is interested.

This year Thanksgiving was not so bad.  I have cooked for years.  Even last year when I couldn’t eat a thing but mashed potatoes, I cooked for everyone.  Gramma always brings some dishes.  She doesn’t have any standard dishes that she brings except pumpkin pie because well, everyone likes what I make and it’s plenty.   She’s tried several different dishes but none of them have ever “stuck” and been something everyone really wanted over and over again.  

Now I want everyone to be able to eat lots of different things and enjoy themselves but if I were bringing food to someone’s house, I would try to take at least one dish the hostess, who had done the majority of the cooking, could eat.  This year, Gramma brought cooked cabbage with onions (I would have been up all night long with a bag like a balloon about to burst), stir-fry vegetables (not a chance, stoma blocking for sure), a cranberry relish made from raw cranberries and raw pears with the nuts on the side (blockage here I come and I’m allergic) and gravy (would I forget the gravy?) besides the pumpkin pie.  This assortment is actually much better than previous years even though I ended up having to throw away the leftovers because nobody else in the house would eat them either.

Last year, it was a very appetizing looking baked cranberry dish.  I had only eaten some mashed potatoes and a bite of dressing because I was so sick but it looked really good and I like cranberry so I took some out thinking maybe I would try to eat it later.  I got a call later that evening, luckily before I had tried a bite.  Gramma knows that I am highly allergic to nuts.  So, she only put nuts in half of the cranberry casserole.  Then when she got here, she forgot that she had put nuts in half of the casserole.  When she got home, she saw a piece of tape on the dish and remembers that was to remind her that half of it had nuts but she didn’t know which half had the nuts.  I have anaphylactic reaction, throat and tongue swelling, wheezing, can’t breathe, to nuts.  I threw away the cranberry casserole.  Nobody else in the house would eat that either.  (She really thought I could eat the half without the nuts and be safe?)

The dinner before that it was a beautiful looking brownie, mousse type, whipped concoction that Gramma brought with her.  Son #1 has Celiac Disease and can’t eat any gluten so he was disappointed to learn the brownies were not gluten free.  Gramma suggested he pick the brownies out.  We’ve known for years he has Celiac Disease.  Those who did try the dessert remarked that it was really good.  Gramma was encouraging me to try it.  I was having the gut issues so I had been eating gluten free myself and wasn’t so sure about chocolate but it looked really good so I was standing there about to spoon up a little bit.  Gramma starts listing off the ingredients for me.  Brownies, chocolate pudding and cool whip; that won’t be too bad, I’m thinking.  And then, after a minutes pause, oh and just a half cup of peanut butter, she says.  I froze.  Really?  Just a half cup?  Well, if it’s only a half a cup, surely that won’t kill me, right?  Thankfully, I had not taken a bite.

At least this year the nuts came on the side, not in the dish.  Not that it really mattered since I couldn’t eat it anyway but she did try.

One of my favorites movie quotes is from Evan Almighty when Morgan Freeman as God says, “Let me ask you something.  If someone prays for patience, do you think God gives them patience?  Or does He give them the opportunity to be patient?  If he prayed for courage, does God give him courage or does He give him opportunities to be courageous?  If someone prayed for the family to be closer, do you think God zaps them with warm fuzzy feelings, or does he give them opportunities to love each other?”

Whether or not you believe in a God, these lines are certainly food for thought on patience, courage, wisdom, opportunity and family.   I’m finding laughter helps me with the patience and the warm fuzzy feelings.  I laugh, eat a drive thru something first or later if I have to eat at Gramma house, and joke that somebody should see that she is charged if I die after a holiday meal.  Same as my husband if I die in my sleep.

Hope y’all had a lovely holiday meal with family.

Wednesday, November 14, 2012

New Life with Moxie

Crying over Spilled Milk . . . or Chili

I never imagined a time when I would have to relearn how to eat.  I also never imagined a time when I would need to gain weight.  Both things happened to me.  Most people don’t understand just exactly what I mean when I say I couldn’t eat during the massive flare of colitis.  When I ate, it caused really intense pain and a lot of time in the bathroom.  Imagine a stomach virus that leaves you pale and sweating and never goes away.  After several days, you know that you need to put some kind of nourishment in your body but it just hurts.

Hunger typically wins out or some kind of medication gives a little relief.  It didn’t for me.  The more pain I had, the less I ate.  Hubby got very worried about me.  He was worried that I was also anorexic.    Many of us that are too thin have heard this and resent it but his reasoning was not my size but the amount of food that I was eating.  I also have food allergies.  For about a year, I ate nothing at all with any fish, shellfish, peanut, pecan, walnut, almond, or wheat; so, no bread, pasta, crackers or breading of any kind.  The next thing to go was any kind of tomato or raw vegetable, then anything with any kind of spice.  Finally, I eliminated anything except completely soft and bland foods and I ate very little of those.  

When a couple scrambled eggs caused me serious pain, then I ate even less.  I might have a pudding cup.  We tried a little bit of everything.  I tried putting everything in the food processor.  Have you ever seen cottage cheese after it has been in a food processor?  It tastes pretty good.  It still hurt though.  By the time I had surgery, I was eating pudding and cottage cheese that been in the food processor, about a cup a day.  I was malnourished and dehydrated.

After surgery, I was so relieved that I was going to be able to eat again.  I went into surgery dreaming of the things I was going to eat when it was over.  It didn’t quite work that way.  First of all, my appetite didn’t just miraculously come back.  They do make appetite stimulants for that, however.  And then, I was still afraid of food.   My colon that had been the reason for the pain was gone but in my mind, eating and food caused pain.  I had to get used to the idea that I could really eat again and it was not going to hurt.  It was slow going at first.  I tried something and when it didn’t hurt I would keep eating that one thing.  Slowly, I kept eating and I started gaining weight.

Now I had another new hurdle.  When you do not have a colon and do have a stoma your body doesn’t process food the same way.  Your colon absorbs the liquids.  Pieces of food can get stuck in a stoma.  All of the healthy foods like fiber are no longer good for you anymore because they can cause a blockage in a stoma.  Gas?  Well, when you are wearing an ostomy bag and have no colon it has no place to go.  The bag on your side just blows up like a giant balloon.  If this happens during the day you can let it out but at night if you don’t wake up it just keeps getting tighter and tighter and the gas just keeps building with no place to go.

So now I am eating again and have gotten over my fear but I have to figure out just which foods exactly I can eat that won’t cause a blockage or cause me to be up all night long with a bag full of air.  I’m finally excited about eating again.  I love to cook!  The weather is changing and it’s getting cooler.  I have several great soup and stew recipes that have always been favorites.  What is the first thing I make?  Chili, of course, my chili is famous!  Oh, was it good!  I enjoyed ever single bite.  I was excited and proud of myself.  Until 5am that is when my ostomy bag was so full of air and chili that it exploded all over me.  I stood in the shower and cried.  I cried all day over spilled chili.  I had finally gotten over my fear of eating, food tasted good and I wanted to eat and when I did that stoma and ostomy bag were putting up a fight!  I really cried all day.  Over spilled milk, er chili.  It wasn’t that I had to get up and shower or change the sheets and do laundry; it was the loss of something.  I was completely ready for the surgery and to have Moxie but I was unprepared for these feelings.  I wasn’t prepared to want to eat, for food to look good, smell good and then for it to still cause problems.   I needed to mourn the loss and change. 

I only cried that day.  I mean, not eating chili or eating only a very small amount and for lunch not supper is really nothing compared to dying now is it?  And I can eat again.  I’m back to a healthy weight.  I’ve learned to really like white bread instead of whole wheat.  I’m getting a little tired of green beans and really soft carrots but I’ll just have to get a little more creative about cooking.  I made more chili for the family.  This time, beside that big pot of chili, I also made a pan of goulash, meat, tomatoes and pasta with all the chili seasonings, minus those beans.  It was delicious!  I topped it with cheese crackers and a dollop of Daisy.  My mouth was so happy.  Moxie was also happy.  Life is good.

Wednesday, November 7, 2012

Getting to Know Me

So, how do you start a brand new blog?  I've had other blogs in the past but life got in the way and I didn't keep them up.  I decided to start fresh.  So first, I guess you need to know something about me and my very crazy, very full life.  These first few entries then are going to be a little background about all of us and how we got where we are now.

I think I have always been a caregiver even if not by profession.  The first time I remember acting in a role as caregiver I was around 7 or 8 years old.  My paternal grandmother was in the beginning stages of dementia and I spent a lot of time at their house.  Granddaddy called and asked if they could bring me over because Grandmaw was having a bad spell.  We went.  I remember asking why.  It was very unusual for us to go to their house in the evenings, I was there after school.  Dad just told me Grandmaw was having a bad day and it would probably make her feel better to see me and have me visit with her.  I did just that.  I remember being a bit confused but not at all scared.  By the time I was in the 4th grade and Grandmaw was asking me my teacher's name everyday after school, I understood she had some kind of old person thing wrong with her without anyone telling me.  And everyday after school, I told her my teacher's name without once being a smart-ass kid.  I have no idea why.  I guess because I loved her.

Throughout my childhood, I watched and was there while my dad's family cared for his mother, my mother helped care for her grandparents and then parents and when I could, I helped.  When my mother started having seizures in my teen years, she needed someone to help her.  When I started driving, I helped drive back and forth to hospitals and appointments with my mother and grandparents.  I was always with them.  My maternal grandmother had rheumatoid arthritis.  At 19, my grandfather taught me what a CNA now does when she broke both feet.  I could use a sheet and turn my grandmother in the bed, change the bed with her in it, take her vitals and I put her on and took off a bedpan more times than I would have liked.  And bathing, well that was easy.  Granny taught me you could stay clean without getting in a tub.  You just washed down as far as possible, then up as far as possible and then you washed possible.  Learning to shave a man's face when my grandfather had heart problems was not as easy.

I considered going into the medical field.  This was the 80's, however.  The medical field was something women did as nurses.  That just wasn't me.  If I did it, it had to be ground-breaking.  I needed it to be as a first responder, an EMT (we didn't have paramedics then) or firefighter or somewhere I could prove something.  Women didn't do that in my area during that time.  What happened?  I'm not exactly sure except that again it was the 80's and other things were exciting, too.  I decided I was really good at technology and that was also groundbreaking.  So, computers, here I came.  Not PC's, like now, the big ones we had back then.  S36's, S38's and the new AS400 that used RPG and RPGII.  Programming was fun, too.  For a little while.

Then in the middle of my 20's, I got married and along came a baby.  I was completely and totally hooked!  Everything about my life ceased to exist outside of that child.  And once again, my primary function became as a caregiver.  I opened a family daycare, meaning I had between 6 and 10 children daily in my home daily, certified by the state and subject to random inspections of property, meals, etc.  My sweet little son was hit with chronic illness, chronic asthma.  Not acute asthma attacks but chronic asthma where his lungs stayed in a constant state of inflammation until it would get so bad that he developed pneumonia or bronchitis.  Later in his life we learned he also had Celiac Disease and can tolerate no gluten.  Nursing once again became a primary function of caregiving.   And then son number two entered our world, kicking and screaming and never sleeping but laughing most of the time.  It didn't take long to learn he didn't fit the mold, either.

Not long after, life was completely turned upside down again.  I woke up one morning and couldn't move my knee because it was so stiff.  I decided I must have strained it, popped some Advil, limped and got on with the day.  A couple days later, I couldn't even get out of bed because the other knee was completely frozen.  I had to have help.  How could I care for children?  I had already been having terrible bouts of vertigo (dizziness) and ringing in one ear that was thought to be some weird Meniere's Disease.  Now, I couldn't move my knees?  What was happening to me?  It took about two years for me to get a real diagnosis.  It the meantime I was terrified by all the things thrown out that "it" might be but was not.  I have Psoriatic Arthritis and not Meniere's Disease but AIED, auto-immune inner-ear disorder.  PsA is similar to rheumatoid arthritis but it goes with the skin condition psoriasis and does not always affect both sides of the body equally.  It can also be more devastating to your spine.  Over the years I have had discs bulging and rupture and now have degenerative discs in all three areas of my back, cervical (neck), thorasic (mid back) and lumbar (lower) spine.  That means I am not a candidate for the pain management options like steroid or epidural injections or even some of the new surgeries.  I make adjustments.  You should me mop with rags under my feet instead of bending over a with a mop.

In 2010, as if ears, arthritis and DDD were not enough, I started having diarrhea a LOT.  I ignored it.  I saw enough doctors.  I already had a GP, rheumatologist, ENT and neurologist.  I did not need to add more.  Ignoring it didn't work very well so, I went on the gluten-free diet with my oldest son.  That helped out and I felt more normal.  Then I had a terrible flare up of arthritis and nerves in my back and took a few rounds of steroids.  On Memorial weekend of 2011, the diarrhea hit me and never let up.  It was worse than any stomach virus I have ever had in my life.  I was diagnosed with Ulcerative Colitis.  Another auto-immune disease than can go along with the type of arthritis that I have.  No matter what type of medications I tried, nothing helped.  I just could not eat.  In total I lost about 80 pounds over those two years.  I was malnourished.  Many days I didn't even have enough strength to pour myself something to drink.  On March 6th of 2012, I had a complete colectomy.  I was too sick at the time for anything but getting that nasty colon out of me.  I got my stoma, Moxie, that day.  Moxie saved my life.   Getting used to an ileostomy is not easy.  But it beats dying any day of the week!  Moxie wears a bag, of course.  I consider it an accessory.  The one I'm wearing now has a purple ribbon drawn on it for IBD awareness.

All of this surely sounds like enough, doesn't it?  Unfortunately, my abdominal pain didn't really stop completely after surgery so I have recently been to see my GYN again and discovered that I have ovarian cysts, fluid in my pelvis and probable endometriosis.  It looks like more surgery might be in my near future.  I'm hoping to just be rid of all those parts, too.

During these last four years, while being a patient, I have also been the primary caregiver for my brother-in-law after a traumatic brain injury.  Sound interesting?  It is.  Life is certainly not dull.  Therapies, appointments, tests, medications, paperwork and more.  How do I keep my sanity?  By trying to find the humor, enjoying everything that I can do and chatting with new friends who really understand what it is like to be a caregiver and to live with chronic illness.  I hope some of my stories after getting to know us will entertain and maybe educate you a little.