The Frustration of Chronic Illness

There should be some type of meetings for us to go to.  Hi, my name is Rebecca and I lied 18 times today.  No I’m not jesting or poking fun at AA.  Many of us with chronic illness display the same people pleasing issues that addicts have.

Don’t believe me? Go ahead…ask me how I’m doing.  I dare you.  My answer is going to be something like this “pretty good…doing fine” or ‘Oh, I’m getting along…” and I’m going to leave it at that.  I mean, do you really want to know?

My right wrist is permanently fused.  Thank God my fingers still move.  Most days it hurts like hell.  I’ve already decided that if I lose use of my fingers that I’m good with amputation, especially if that mitigates the pain.  It hurts to type, wash dishes and feed myself.  I’ve learned to do just about EVERYTHING with my left hand.  Yes, EVERYTHING, infer accordingly. Well except cut with a knife, my knife skills are horrific and will probably one day lead to an ER visit.

Do you wanna hear that my left knee crunches and crackles like rice crispies?  Or that after standing up to wash dishes and load the dish washer or put on a load of clothes my feet swell and become numb.  That I’m only good for about one hour of chores in the morning and another hour in the afternoon?  That buying groceries exhausts me and by the end of the trip to the store I’m shuffling about and dragging my swollen aching feet.

 

Swollen foot...developing another nodule.

 

Or, do you want to hear about the fatigue?  That feeling of being bone tired and utterly exhausted but knowing that you still have to get up and get the kids to school or fix dinner after a long day at work.  Or maybe you want to know about the burning dry eyes, dry skin and how difficult it can be just to swallow food.  How you sometimes eat soup because it’s EASY and not because you are on the soup diet.

Oh you wanna talk about diet…why don’t you take some of these little Satan’s tic tacs…prednisone.  You will bloat up like a bull frog.  But later, when RA ravages all your systems, you start wasting away. 

Or maybe you’d like to hear about the pharmaceutical side effects?  My hair fell out on 2 of the 3 drugs I tried.  Methotrexate made me so nauseated, it was way worse than being preggers with a yager hangover.  Now THAT is nauseated.  The Aleve that I currently use to manage the daily inflammation is eating up my stomach.  I try to remember to take a prevacid each evening and keep a bottle of Tums next to my bed.  It seems that the drugs are almost as bad as the disease itself.

I could keep this up for quite a few more paragraphs…but if you read this far then you are getting my drift.  Four out of Seven days a week, I feel like shit.  Is that what you want to hear?  The truth smacks and doesn't make for polite Wal-Mart/grocery store conversation.

What can you do for your friends that may have Lupus, RAD, Reynaud’s, Sjorjens or Psoriatic Arthritis?  If you notice me or them having trouble lifting a cup (yep, the old coffee cup can sometimes be too heavy to lift) offer to help.  If you notice your friend, sister, mother/father looks tired don’t offer to help or ask about a meal.  Just show up…sweep, vacuum or load the dish washer.  Pay for someone to clean their house. Drop off a pot of soup or frozen casserole.  Believe me any help will be appreciated.

 

Please understand that if you see one of us out somewhere with family or friends, they are making a TREMENDOUS effort to be there.  Just because they are out and about doesn't mean it won't cost them later.

Yeah…I was a little worked up when I wrote this.  It is so hard to get other people to understand the pain, the debilitation, and the life sucking of a chronic disease. But I ain’t taking none of it back…it’s the truth.  And if you can’t handle it, then please just walk away and don’t ask…because today I feel like shit…and I’ve got a softball awards banquet tonight that I don’t intend to miss.  So I’m off to find my prednisone and aleve.  Gonna chase it with some Benadryl,  put up swollen foot and rest.

The Soup Edition

In between billing and posting loads today, I am simmering a pot of taco soup.  The weather isn’t that cold…yet.  However, I am making it to take over to Scott’s Mother and Step Dad.  His mom had a pacemaker put in Saturday.  She is doing really well, but still should be taking it easier than what she is.
 

And bless her English soul, she loves any kind of soup.  At her and Grandpa Dave’s ages (80 plus), they don’t do a lot of cooking and eat a lot of Campbell's out of the can.  I told Scott to give her a choice of two of three soups:  Potato soup, taco soup or vegetable soup.  They chose Taco and Potato.  

Taco soup is sooo easy…and I probably never make it the same way twice.  The ingredients are simple and this time of year most people have them on hand.

 

Ingredients:

1 lb Ground meat browned (venison, beef, pork, turkey…your choice)

½ cup diced onion (for us RAD folks, pic sweet sells them already diced or buy fresh from produce dept)
Combine with:
1 can tomatoes with chili’s
1 can diced tomatoes
1 can stewed tomatoes
1 can black beans
1 can red beans
1 can corn
2 tablespoons of taco seasoning (homemade)
2 tablespoons of ranch seasoning (or one packet)

I don’t do this at home like most folks would.  I add the can of tomatoes with chilies to the browned meat and onions.  Then add one half can of black beans, one half can of red beans and drained can of corn.  Blend remaining beans and can of stewed tomatoes in blender and add to soup pot.  Then add the final can of tomatoes.  I also add about two cans of water rinsing out the tomato cans.

Add the taco and ranch seasonings, stirring well.  Allow the soup to simmer.  The longer it cooks, the better it is.  Now if you like soupier taco soup, add an additional can of petite diced tomatoes or a can of beef broth.  I prefer tomatoes.  If it is “too” spicy, reduce the taco seasoning.  In other words, cook it to you and your family’s taste!

Other than the pain of opening cans (Santa please bring me an electric can opener…my wrists will be so grateful!) and the onion chopping, this is very easy to throw together.  My girls like it served with grated cheese, sour cream and tortilla chips.  It is also wonderful with some Granny Fussell Egg bread. 

I am going to put the cooled soup in two medium sized containers in the freezer.  This way, Grandma Peggy can take out just the portion that she and Grandpa Dave need for one meal.  This is also very easy to double for a crowd or if you want to fill up that freezer for the busy Basketball season!

 

Up next…Potatoe soup:  It is wonderful too!

The Work Rut

I guess for some of us, the work rut is just a habit.  A really bad habit that we fall --- no plunge into head first.  The trucking had been very busy for nearly four months and guess what feel to the wayside while it was so busy.  You got it, my health.

Now if this was the first time, or the second time, I allowed…yes willingly allowed, my work schedule to dictate my health I could say, “oh, my bad…”  But for me, this is just the same old rut…the one I very comfortably go back to.  I work like a dog and run myself ragged looking after the kids and everybody BUT MYSELF.

Well, guess what?  As usual, it has caught up with me.  The loads starting slowing down and as usual, I started fretting.  Oh, my gosh…no loads! What will we do?  And as usual, eventually during praying (more like talking to God) I finally got the message.  He must think I am so dense.  Duh…maybe the work has slowed down because I need to slow down.

It was like a smack right between the eyeballs.  Yes, I did partially quit my full time job to help Scott with the business.  But mostly, I quit to have more time to REST and to invest the rest of my time into my children and family.  A decision made after many long arduous hours of prayer.

Since I didn’t have as many loads to bill, this Sunday afternoon the girls and I went to the park.  The park that has a playground, walking trails, four super nice basketball goals, soccer fields, softball fields…and only about 3 miles from the house.  Maddie, Carlee and I shot hoops while AnnaB played her heart out on the monkey bars.

Well, I shagged balls while Maddie and Carlee worked on shooting drills.  The weather was cool and we enjoyed just getting out.  We are planning to go back today weather and homework permitting.  And I’m looking forward to my one-armed woman ball shagging date with my girls!

If I won the Lottery

The joke use to be, if I won the lottery I was building a gym for the girls’ former school…a big gym, with air conditioning and some nice soft seats with a mezzanine.  However I’ve since had a change of heart.  No Gym.  I’m gonna build my baby school…
 

Reality is if Mama won the lottery nobody would know…until the crushed ice machine was installed…that would be my dead giveaway.  After paying some bills, buying a really large (used, I know always cheap) diesel motor home, I would give a lot to charity.  Then I wondered what charities?  Then later that day I watched a 27 minute video about the amazing Dr. Ben Carson. 

And then I decided…I would build a school.  That’s right, an LD school, South of Macon.  It is amazing at the resources that are available north of Macon, especially if you have deep pockets.  But nowhere in the rural south is there a Bedford school for children who learn differently.

Click here  to learn about Bedford….http://www.thebedfordschool.org/

So if money and budget weren’t an object or I had the money in the bank, how would I do this? So I thought some more.  I would partner with an existing independent, preferably parochial school.  Wouldn’t it be wonderful to have an LD school on the same campus with an existing school?  A school within a school…

The students would get the best of both worlds…an established campus and infrastructure along with a learning environment specifically designed to assist with their learning. 

I would build a separate wing with 8-10 classrooms.  The classrooms, much like the ones at Bedford would have state of the art technology and be very organized.  The teachers would be trained just for LD kids and the curriculum and daily schedule would reinforce methods that will allow them to succeed.

Class size would be limited to somewhere between 6-10 kids per class and would have grades K5 through 9^th grade.  The goal:  to equip students to enter high school with the background and skills to be successful while also provide services to transition through high school and on to post secondary education.

Would this be expensive?  Most certainly.  Bedford is about 17G a year.  But in south Georgia this education could be offered much more economically.  And y’all know I’ve crunched the numbers.  Let’s say that typical private education tuition averages 5 grand per year with a targeted enrollment of 15 per class.  That class would generate 60,000 in revenue to cover teacher pay and overhead.  This is revenue per student NOT cost per student.

 

If half that enrollment would be optical for a LD classroom, say 8 students, then an LD school class would need to generate $7500 revenue per student.  Compare that to 17,000 per student.  Now look around.  Would a school with this type of student population be able to draw full enrollment for K5-9^th grade?  That is a total of 80 students. 

I would have happily either commuted or relocated to this type of school had this been an option for my child.  Now I want to know are there 79 more parents and students that are would do the same?

And I also want to know where is a school that has a heart for LD kids and a vision to offer this very needed service in South Georgia? 

Very sadly and very regrettably, I have realized that my child could have had that Bedford education…and had it near her family and friends.  I didn’t crunch the numbers…the cost is actually small, the tuition even though more than the average independent school in South Georgia is still attainable for many families with LD students. 

For less than a million bucks we could have a Bedford South.  If you are interested in building this dream, if you have a vision of an alternative other than moving your entire family or if you have that million (or a few hundred thousand), please let me know.  I’d come back for that.

Sniff sniff…I smell Fall

For those of us who love to bake, especially during the holidays, Christmas will be here before we know it.  Now some folks look forward to the shopping, decorating and parties.  Not me.   Nope, I look forward to all the grocery stores setting up the baking display.  Like a moth to a flame, I start circling as soon as the poor employees break out with the center baking isle at the Wal-Mart. 
 

I’ve already declared I would bake this year.  I started Christmas baking when we bought our first house in Jasper as a way to have inexpensive but delicious gifts for neighbors, coworkers family and friends.  I taught myself to bake with the really good ingredients, buttah and high fat chocolate.  Once I returned to full time work, baking became my therapy.  I was meant and determined to bake myself into the holiday spirit. 

As an accountant, the worst part of the year is from November through March.  Really it starts in October…and just ruins any Christmas cheer you attempt to conjure up.  The worse work was, the more I baked.  One particular year, our ENTIRE freezer was completely full of cookies. 

I have no clue how many dozens or flavors I baked.  I just know I baked and baked and baked.  And sang Martina McBride’s Christmas cd for hours…late into the night. I don’t recall if I ever developed the full blown Christmas spirit…but I my coworkers can testify to a tasty Christmas!!

Unfortunately, my love for baking and my RAD tend to contradict one another.  I’ve always used a hand held mixer to mix cookie dough.  This past Christmas I baked about half my usual repertoire due to not physically being able to use the mixer.  Unless my right wrist experiences its own Christmas miracle, this might be the last year I can bake solo.  (The wrist has completely knitted together and gives me fits.  Some days I’d literally like to gnaw it off, but the sight of blood makes me faint.)

Y’all know I got a game plan…I’m gonna bake.  But I’ve got a few obstacles to overcome.  First, I don’t have an upright freezer up here.  So I’ve got to either find a very economically priced freezer or bring up the older very heavy one from home.  Then I need to figure out how I’m going do so much chopping with my left hand.  (Send band aides…I’m gonna need ‘em.)  Lastly, I’ve gotta get a way to play Martina McBride Christmas favorites cd while I bake.  Perhaps I need a trip to the pawn shop for an early Christmas present to me…an iPod!!

Task number one is going to write down all the recipes…that’s right.  I’m going to make me a booklet of all my favorite Christmas cookie recipes.  I would like to make up a mini recipe book with the 30 plus Christmas recipes along with some of my Granny Fussell’s most famous.  Hopefully I will be able to figure how to do this and sell it through pay pal or Amazon.

 

Task number two is to make my baking list: a guesstimate of all the folks I would like to gift some of my baby Jesus Joy to.  And lastly task number three is my baking budget…It may amuse a few folks but I do budget this into my Christmas and holiday expenditures…right along with gifts, decorations, extra gasoline and donations.

I’m tremendously looking forward to this season of holidays and ready to spend extra time with my family and friends.  So I better get to baking…only 91 days until Jesus birthday!!

Homemade BBQ Sauce

In preparation of not being about to do a whole lot of cooking over the next few weeks, I finally got my big behind in gear and starting doing a little freezer cooking.  Yesterday evening after a whirlwind trip to the big Dawg city, I cooked about 4 pounds of ground critter in the crock pot (your choice…sometimes it’s deer, turkey or cow).   This time I drained it and then seasoned with my homemade taco seasoning and one can of chili tomatoes.

Two gallon size bags are now in the freezer holding about 1 ½ pounds of cooked taco meat each.  The rest is in a container in the fridge for tonight’s dinner.  Smart me!!  In discussing what else we would like this week, HC2 declared she wanted some BBQ meat.

This translates into a Boston butt (pork roast) in the crock pot, which I’d already told y’all about once before.  She was in luck as we had one in the big freezer.  It is now nearly done in the big crock pot.  Sadly, I am completely out of BBQ sauce.

This put me on a mission to find a 98% homemade sauce recipe.  I hunted around on pinterest but most sauces were ketchup based.    Fortunately, being born Baptist and liking to eat, I have a lot of church cookbooks.  I flipped through a few of these cookbooks and found one to serve as my “guide”.  I know this could be dangerous.

The base of this sauce is conned tomato sauce.  I wanted to make enough to use for our dinner and baste the roast.  I think I will have plenty since I nearly quadrupled the recipe.

 

1 large can of tomato sauce

1 cup brown sugar
¾ cup of vinegar
4 or 5 Tbsp. of brown spicy mustard
2 Tbsp. of dehydrated onion
1 Tbsp. of paprika
½ tsp. of garlic salt/seasoning
½ tsp. of cayenne pepper
Pinch of salt and dash of black pepper (maybe two)

Once the ingredients all “melted” including the brown mustard, I let it come to a gentle boil then reduce the heat.  It is not a thick sauce.  If you like it thicker, maybe add a little cornstarch or simmer longer.

This is a sweet n tangy sauce.  You can definitely taste the mustard and hint of garlic.  I would like it a bit hotter but don’t think that would go over too well with the kiddos.  Keep on tasting until you get it the way you want it.  For now, since I haven’t recycled an old ketchup bottle, I have poured it into an old cheese canister.

 

Preparing to go Low Carb/Kind of Gluten Free

The past couple of weeks, as suggestions by family and a few forum friends, I have been researching gluten and its effects on the autoimmune system.  Wow!!  Who knew? It has amazed me at how much I have learned not only about RAD, but about the whole spectrum of autoimmune diseases including celiac disease. 

There is a ton of information out there and I have read so much that my head hurts…pun intended my migraine friends.  I can’t recall all of the data, but the gist of it is today’s modified wheat is much higher in gluten than what our grand and great grandparents ate.  This could be leading to an increase in the many people whose bodies respond in a negative way to gluten.

And by gluten I don’t just mean white bread.  The stuff is everywhere…cookies, cream soup, gravy mixes.  It is truly difficult to comprehend how much gluten is in the foods we buy and consume each day.  I am very overwhelmed and have been for about a week.

It is difficult to determine where to start.  Weight watchers has been working for me until I went back on prednisone for a week.  I think it would be possible to low carb/less gluten using the weight watchers plan.  I’m still researching this part so I will get back with you on this.

I’ve read part of the blond chick from The View, Elisabeth Hasselbeck's journey to a celiac diagnosis.  It is heartbreaking at how she suffered and amazing at how she has overcome its debilitating effects.  It does give me hope that through the right combination of meds, diet and exercise that I can recoup some former quality of my life.

My goal isn’t to run marathons or swim the English Channel.  I simply want to get back to a point of feeling well with enough energy to accomplish each day’s events.  So please bear with me as I start to eliminate all this wheat.  I’m pretty sure my family won’t enjoy this and it won’t be easy.  I’d certainly appreciate your prayers and support.