What Day Is It? (and other stress-induced questions...)

Where did the time go?  It's nearly Thanksgiving.  How do I know this?  Because the assisted living facility where my daughter called to arrange transportation this weekend for my daughter to come home.  Really?  I actually thought it was Friday...last week.  Then I was on a conference call I am on every single workday, and I jotted down my notes as usual under the date.  While idly making notes and doodling, I realized that I had been writing the dates as "May" for...wait for it...ten days.  And never noticed.  Either I am really out of touch or...ok, I'm just out of touch.

Every article I've ever read on autoimmune diseases warn about the dangers of stress.  Stress is a killer, no matter what you do (or don't) deal with.  It can cause all sorts of problems in the body from the inflammation it causes.  In my case, its something I get to live with every day.  So what do I do?  Stress myself out until I literally boil over with cold sores across my lips, down my throat, and a few zits thrown in for good measure.  As long as I can remember, the cold sores on my lips signified the amount of stress in my body.  This time I decided they weren't going to be as bad and I got right on them with essential oils.  And it worked.  They immediately stopped growing--at which point I promptly forgot to continue my treatment and three days later--yup.  All across, around, and in between.

Which brings me to the next thing I know about stress.  My memory goes.  And not just wondering what day it is--I mean as in I started to dial the number of a conference call yesterday and by the time I finished dialing, I had already forgotten and then forgot the call altogether.  The other day I went to the grocery store and when I reached the checkout, I realized I had become what you swore you wouldn't as a child--THE Mom in the store with the slippers.  Wouldn't you think I would have noticed or remembered BEFORE I left for the store?  Or how about the food I put in the oven, burned, replaced, then burned again?

Next up on the signs of the stress-o-meter--lack of focus.  Which kind of goes with memory.  And forgetting what day it is.  But truly deserves a mention all its own.  For example, while typing this, I have been distracted no less than five or six times and so this short little ditty started early in the morning is still getting written at 3 pm in the afternoon.  In fact, after I wrote the first sentence of this paragraph, I had to check my e-mail on my phone.  Just in case I missed the latest spam on how to enlarge my very absent piece of male anatomy.

I hate to admit it...but...

Gosh!  Where do I start?  With the vacation that wasn't one?  Or with the changes since then?  Our vacation turned out to be more "tion" than "vaca."  I think we may have missed the whole concept of vacation somewhere.  No less than four children had major crisis while we were gone.  Perhaps they were waiting for us to get "there".  On the way home, my husband was rear ended on the freeway, by a semi truck--and walked away.  He will tell you proudly that the semi truck had more damage than he did, but the truth is it totaled all of his business equipment.  Fortunately, the semi's insurance company is liable.  Unfortunately, it will be a long time before they pay out.  Fortunately, my husband is fine!

For a year or more a friend of mine has been telling me about essential oils.  For the most part, I let it in one ear and out the other.  I'm a little scientific, I guess, but when someone starts throwing testimonials and stories at me as proof a product works, I am not too excited about it.  In fact, truth be told, it makes me want to run with all speed in the opposite direction.  I want SCIENCE.  This friend showed up with a little science when she came to Texas back in February, so I was more interested and thought about giving it a try.  I duly trotted myself down to the grocery store's "health food aisle" and checked out the oils there.  They were so expensive, but that wasn't the worst part--they did not smell like hers.  In fact, one of them was so bad I figured if I used it by my boys when they were passing gas, no one would even know.  I went home and figured I had done my due diligence.  And frankly, I did not want my friend to be right.  Because at that point, I was still waiting for what was going to happen "to" me next.

Fast forward to the tion-no-vaca.   My dear sweet little guy struggles through life so much.  He had reached the point where I knew he was going to end up back in the hospital if I didn't find a solution.  So to doTERRA I schlepped because I figured at this point, I had nothing to lose.  To borrow my sister's phrase, I bought enough oils to slick my way back to Texas and started using them on him.  And they worked.  He has had one PRN since that day and he was using 2-3 a day.  Then I started using them on me.  And they are working.  Then I decided to start diffusing them into the air in the house.  And there was a noticeable difference in my boys level of activity (code for with four boys at once....) And then I spent two weeks swallowing crow and chewing on it while I figured out that I had been a bit of a stupid idiot.  This actually, is not a new concept.  I figured the final proof was when the repairman came yesterday to fix the washer.  He smelled like he lived in the room in the airport where all the smokers go after an eight hour flight.  When he left, I decided to go look for the kids who had disappeared.  They had started the diffuser and were all huddled around sucking in the mist as hard and as fast as they could.  If the kids are doing it, it must work.  They balk at anything that isn't 95% fat, sugar, preservatives, or all three.

It made me wonder, though.  How many things in my life have I decided weren't worth my time that could have been a blessing in my life?  It pains me to think about how stubborn I can be.  It also made me wonder how many times God has to keep sending the same messages to me because I can't seem to see the neon sign blinking in my face.  And lastly, it just might be that this disease that I felt was slowly sucking the life out of me has started to actually teach me how to live.  Boy howdy, would I hate to admit that.

Who Made This Up?!

Seems like there have been a few more days lately when I am discouraged.  This morning I was unable to get up until 10:00 am.  I showered, then fell back in bed because my arms and legs were shaking so hard I couldn't hold myself up.  They are propped up on pillows so I can type.  This breaks my heart--but I had a busy day yesterday, and so today, tomorrow, and possibly Sunday, I will be recovering.  Its kind of how it works.  Had I paced myself better, I'm pretty sure that I wouldn't be laying here ready to cry.

It kind of makes me think about life in general.  I'm thinking out loud on this one, so to speak.  We have this whole set of expectations of things that we're supposed to be and supposed to be doing.  Who decided that exactly?  Who decided that to be a good mother I had to be a Domestic Goddess, Chauffeur to Many Good Activities, be a Molly Mormon at church, a Sexy Siren to my husband and whatever else I'm "supposed" to do perfectly?  When did I buy into that?  Really--they aren't happening and certainly not all at once.  I know people who are these things--but that ship sailed for me years ago; which had absolutely nothing to do with being sick.  I just wasn't.  And the secret truth is--I don't want to be.  Since autoimmune diseases are made worse by stress, I think its a pretty safe bet that my body has just decided to quit.  And there's not a thing I can do about it except do my best on whatever level that is.

I started thinking about this differently for the first time years ago when my older sister said "You know--you can have a perfectly clean home or you can have happy kids--you can't have both."  Later, my Mom came to visit.  She said "Honey--you are the best housekeeper out of all the girls."  I was so proud till I thought about it.  The best housekeeper?  That's what I was known for?  Not a great Mom or wife, or a fun person, or even for my brain (seriously a stretch, but you get my point).  A good housekeeper.  I started changing a little at a time, but I have never mastered that.  Later on, that same sister told me I was such a fun Mom--and she wished she could be more like that.  If she only knew.  I'm not like that naturally.  I have to think "if I were a fun Mom, what would I do?"  Because really, my natural Mom instinct is to ask them to rub my feet, very, very silently and then sit in time out.  Fun for me.  For them--not so much.

The most serious side effect of being LDS (a Mormon) with a Jewish heritage is that when I don't do all these things, I must have Guilt.  Guilt is cellular.  It's inherited by my Jewish roots and perfected by my LDS religion.  NO ONE does Guilt better than this combo.  Its an art, really.  A thing of beauty to be proud of.  There's an old story about a nice Jewish Mama who buys her son two ties for his birthday. He comes dressed ready to go in one of them to honor her.  She looks at him and says "what's the matter--you didn't like the other one?"  To be truly great, Guilt should have added as an aside, and sighing to no one in particular "see how I suffer?"

My sisters and I laugh about Guilt and apply this type liberally.  But there is another Guilt.  The one that eats away at your insides because you aren't pretty enough, smart enough, spiritual enough, sexy enough, nurturing enough, Anything enough.   Added to this is the list of sins.  I swear (really, I grew up milking cows.  Find me someone who did that who doesn't).  I yell at my children on occasion.  I do not have a marriage where my kids have never heard me fight.  Granted, its more like bickering, but still not like my parents.  I forget family prayer, family home evening, scripture reading and other things I'm never supposed to forget.  We owe money to people (we will repay) because we lost everything we had--more than once--and I can't stop thinking about how that affects their lives.  I once told a huge lie in high school I have never forgiven myself for.  Never mind that I'm probably the only one who remembers it.  Once a respite kid told me she hated me and no one liked me.  I told her no one liked her either, but that didn't stop us from caring.  Who says that?!  I called a lady in the grocery store a B#$@& for making racial comments about my son.  OK, part of me is unrepentant on that one since she was in fact, acting like the aforementioned label but no excuse for my response.  I don't take my kids to every activity at church, school or in the community.  I haven't taught the younger ones to work like I did the older ones.  Part of that is their abilities; part of it is I'm tired.  And the one I'm still the most ashamed of--I told my sister where to go once when we were growing up.  I cringe every time I think of that.  Guilt.  Eating away for sins I committed years ago.  For things I do now.  It's like acid to your soul.

And to make it all worse--we compare.  We compare our worst to everyone else's best.  I come from a family of truly great people.  Who married truly great people.  Who do truly great things.  Not the things everyone knows about.  I'm talking about great providers, fathers, mothers, sisters and wives--the things that really matter.  I'm talking about people whose greatest sins are far less than mine.  It doesn't matter if they were in action bigger or smaller than mine--they have learned to forgive: themselves and others.  They truly are heroic to me.  Quietly living lives of goodness doing the most important things in life.  Why can't I learn this lesson of forgiveness and goodness?  Sometimes I think that goodness gene just skipped right on by.  I can guarantee you not one of my sisters ever called someone in the grocery store a name or told a kid they weren't particularly well liked.  I also don't think they dressed up like a tampon for Halloween.  (Note--I'm not saying I did that.  Really.)  I'm also pretty sure they are more humble-- truly humble, not debasing.  I'm still whacking and flailing away at life--like that chicken we butchered in the yard years ago that missed its head but didn't know it.  I really thought I'd be a better person with more figured out at this point in my life.  I remember my parents at my age--they seemed so much more together.  If I were completely honest, I'd have to say they were.  But if I focus on these things, I can't win.  Surely that's not how its supposed to be--to never be enough.

So who decided that to be a good person I had to do all those things?  Where is this written?  But we all do it and we all accept that this is how its supposed to be.  I think we're running around trying to be everything we can be to the point where we aren't doing the most important things.  Its not even bad choices between bad things--just between too many worthwhile.  Dallin H. Oaks said it best when he said we need to choose between "good, better and best."  (Good, Better, Best) What is my best?  Not my perfect, but my best use of the time, abilities and resources that I currently have.  I haven't gotten that down, obviously--I'm in bed writing this.  But I think its one of those little blessing lessons I can learn here.  I don't have to buy into that Super Achiever People Franchise.  I don't have to let others decide.  Distractions have got to be one of the most powerful weapons of the adversary today--if we are too busy, too important, too plugged in, how can we feel His spirit and the promptings that come?  How can we teach and love and notice those around us?  And when we buy into it, we let ourselves erode.

So now, I've come full circle, I guess.  I can't do it.  I can't do what others expect, and I certainly can't do what I expect.  I once had to reassess what it meant to be a good mother--it was a process that took a long time.  If I used the definitions I had used previously, in our unique family situation, I would surely be a failure.  I am sad because I am not a truly great person/mother/wife/sister/daughter, actually.  I remind myself of Scarlett O'Hara when she said "I always meant to be more like Mother."  You can fill in any name in place of "Mother" in that quote and it sums it up for me.  I think what gives me the most hope is this:  the Savior said that the two greatest commandments are to "Love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind.  This is the first and great commandment.  And the second is like unto it, Thou shalt love thy neighbour as thyself."  (Matthew 22: 37-39 KJV)  Later, is the story in the New Testament where Christ is speaking to Simon. Simon has his knickers in a knot because Christ is letting a woman, a well-known sinner (I totally get her), wash his feet with oil. He criticizes the Savior for allowing that--as if the Savior in true humility should elevate himself above others.  Christ tells him a story about two debtors whose debts are forgiven--one owes much more than the other (say me and my husband vs the US or Greece).  He asks Simon which one loves the creditor more and Simon, being a genius, answers that of course, the one who owed more money.  Personally, I think it might possibly be the other way around.  The one who owed less probably could afford less...but the Savior agrees with Simon the Lofty.  But then Christ tells Simon "Wherefore I say unto thee, Her sins, which are many, are forgiven; for she loved much:  but to whom little is forgiven, the same loveth little." (Luke 7:47 KJV)  I put a lot of hope in that--my sins are many.  I don't get too many things right.  But I try to love and care about others.  And I hope the Savior will forgive me much because I loved much.  Regardless of whether or not I got much else right.

Its all Sliding...Downhill.

Tonight I had high hopes for sleeping, but once again, I'm up.  I made the mistake of reaching behind me to pull my pillow into place and felt like my shoulder was wrenched out of place.  So now I'm trolling the Internet reading the news.  The biggest news is that my Source of Snark for the last week or so, Representative Anthony Weiner of New York, resigned.  Mr. Weiner has been an absolute blessing in my life (did I mention that before?) because really, with a name like that, it was almost predestined.  He has provided much entertainment over the last week.  I think it was rude of him to suddenly grow a conscience and quit. I'm going to have to find something else to parlay into what passes for entertainment.  I think my parting shot should be shared.  To the people who were enjoying so many jokes at his expense, I tweeted "I think you need to give him a break.  He is probably an upstanding citizen who is feeling very deflated right now. I think you need to give him time to rise above it."  Took two tweets, but it was a fitting burial.

Yesterday I swallowed my pride and allowed someone to come into my house and scrape off the top layer of scum in the kitchen.  It was a blessing and a total humiliation.  The woman who came was very sweet, but I wonder if she left thinking no one should have been eating in there for the last six months.  I can tell you.  It wasn't six months--only four.  The only room in the house that is spotless all the time is the bathroom.  I keep that pristine.  Mostly because I spend so much time in there and I am not emptying the contents of my stomach into something that makes me want to hurl further.  This means I have had to ban my son from my bathroom.  The problem is boys aren't too specific.  They figure as long as they hit something, they are doing fine.

I received a wonderful surprise package in the mail from a friend who sent all kinds of little odds and ends with cute notes attached to them. In the box was a hat to cover my head.  I had occasion to wear it today because another full chunk of hair came out in the shower.  I covered up with the hat and went to the psychiatrist anyway.  (The psychiatrist is not for me.  It is for my special needs kids.  However, I have had occasion to think that perhaps we are medicating the wrong person.)  I have never, not once in my entire life, gone out in public in a hat.  I am not a hat person.  Hat people have style and flair and a thin face.  My face as a usual course is as wide as it is tall and has been blessed with several chins in case the first one doesn't work out.  Then the meds have turned it into an advertisement for a solar eclipse.  As for style and flair, the only style I have is at least five years old and flairs because its completely stretched out and the elastic is shot.  But I put that hat on and went.  And my sainted husband told me I looked cute.  That reminds me--I need to make an appointment for him at the optometrist.

The pneumonia continues to haunt me.  I figured that since the antibiotics ran out a week ago, the pneumonia should have too.  However, it may have taken up permanent residence in my body.  My lungs are producing enough mucous to drown a horse.  The down side may be that its the MCTD increasing its hold on my lungs and not the pneumonia at all.   The plus side of this is that I'm going to learn to spit a loogie like the cool high school football guys do on all the sidewalks.

I also discovered something that I'm not sure I want to know more about.  I was playing word games with the kids in the car today and Shoshi pronounced one of wise statements ("Seriously, Jakob?!  I'm totally sure you didn't know that Hannah Montana wasn't real.  Really she's just wearing a wig and she was just PLAYING at being Hannah Montana so people would leave her alone.")  I started laughing and glanced in the rear view mirror.  And only half of my smile goes up.  One side of my face is just kind of...smirking.  I have had a lot of numbness on that side, but I have chalked it up to the same thing that makes my arms and legs go to sleep all the time (highly annoying--takes less than a minute and it is painful--something new and different).  My mouth and face gets numb on the right side.  Now its not paralyzed, but it definitely is lopsided.  So this really bothers me.  I have practiced over and over again trying to learn to raise one eyebrow.  That is just such a COOL Mom trick!!  Now I realize that my face has decided to cooperate, but in the wrong place.  Just once I wish I could get it all right.  I'm supposed to raise the eyebrow, lose weight in my butt and thighs (and not in the breastal area), and sleep at night.  Instead everything is sliding--my mouth, my boobs and my loogies.

Its the Mice--really...

It's been one week since I was diagnosed with pneumonia.  It is now obvious to me that my brain is still not getting it since I was just sure 48 hours of antibiotics and I'd be back on my way up.  Yes, as I was saying...one week later, and I'm still hacking up a lung and hugging the mattress.  Not only that, but I have a bladder infection from the antibiotics killing off what was left of the good stuff in my gut.  The fact that the cat found a mouse in our house is actually the issue, though.  I refuse to get out of bed until I am assured that all mice are gone.  At least that's the excuse I'm using.  It can't be that I am not setting superman records for recovery.

I read an entry butyoudontlooksick.com and she showed pics of herself in bed with her computer.  That was seriously my favorite part.  I'm sure her words of wisdom were fabulous, too, but I suddenly felt much better about myself.  However, its a bit unfair because she looks GOOD in the photos and I...well... I'm sitting in bed in ratty old athletic shorts with my husband's t-shirt because its huge and worn in all the right places.  And they don't match.  My hair hasn't been done for a week (it's been cleaned, just not done) so all my bald spots are showing.  We won't even deal with the med face.  Then she has a clean night stand and what appears to be a clean room and matching sheets.  Confession.  Its been so long since I felt well, that the sheets aren't even on my bed properly.  And my nightstand?  There are approximately 15 vitamin/supplement bottles on it, stacks of books and various journals, water bottles, my wedding ring box (if I can't wear it, I at least want it where I can see it), and the floor in front is littered with the remains of 1/2 a box of Kleenex.  I have to admit though--my nightstand always looks like that.  I have straightened it up, but it only takes about a week and the books and journals have all reappeared.  Remember the scene from Sabrina (the Harrison Ford version) where the chauffeur's apartment has all the books stacked everywhere?  That's my room.  Back to the entry.  I still bless her for putting in the picture.  I have considered that maybe I need to break down and buy matching and cute pajamas.  Do they have a link for that online?  I can't actually go shopping because I can't get out of bed...the mouse and all...

In my search for a healthy treatment alternative, this week I ordered the first of what will probably be many, replacement products for my home.  I am trying to eliminate every toxin I can that my body comes in contact with on a regular basis.  So that means shampoo, conditioners, laundry soaps, toothpastes, make-up, the works.  It will probably take me a few months to accomplish this since it all costs money.  Which is really low of these companies.  They claim they want to help--helping would be free, right?   My criteria are that every ingredient in the product must be chemical free and all natural, and that I have to be able to pronounce the ingredients.  I'd like to say that I have narrowed it all down to one company, but I haven't.  I'm getting my vitamins and supplements from one company, my household goods and cleaning products from another, and my make-up and skin care from a third.  Mostly preference, I guess.  One of the things that just occurs to me is that I have always gotten a rash from fake metals (no cheap jewelry) and non-organic fabrics.  Preview of things to come for me?  Who knows.

I think the epiphanies I have are slower in coming to me than they are to others.  I have been congratulating myself all this time that my kidneys were not involved so I haven't given them a moments thought.  This week I also realized that if I want to keep them that way, given the propensity of this disease to hit there, I better start taking extra good care of them.  Maybe that's a life lesson anyone can take away from this.  If we want to survive life's physical battles, we better take care of what we have in case it gets called into action.  I also figure that if I die and its possible, I want someone to benefit from my body.  So I am an organ donor.  I would like to think my kidneys would be perfect so that one part of my body is.  I keep telling my kids that when I die, I don't want them wasting money on a casket, burial plot, etc.  Grind me up and throw me out.  I'm dead--I don't care.  But in the words of my daughter "uhm-no." I think its because they secretly want to get back at me by putting something heinous on my tombstone.  If they are going to do that, I want them to put "Oops!" on my my stone.  If they put "Love is Spoken Here" we will all know that they really hated me.

Lastly, since Apple is not dropping a coveted iPad on my doorstep, I have started saving money each month for one.  I have decided that I really don't care if the iPad is an all natural product with only pronounceable non-chemical ingredients.  For that, I'm willing to make an exception.  Because those stupid mice are going to keep me in bed for awhile, I think.

Doing the Two Step - In Reverse...

One step forward, two steps back.  Approximately 6-7 hours out and about last week and I get pneumonia.  I don't even have a good spin on this.  Really?  I think they should just shoot me now and mount me on the wall.  They can hang a Christmas ornament on my head once a year and call it good. For good measure, they can hang lights around my neck for birthdays.  I prefer the large silver hoop earrings and no pink lipstick no matter what the taxidermist says.

Telling the Truth & Red Purses

I promised myself when I started this blog that I would tell the truth.  A recent e-mail from a friend underscored the need and made me ooze out of my hole today to do this.  I really don't want to, but in the interest of making sure no one thinks I'm better than I am, I find it necessary.  I think its important to know two things...hang on.

OK--I'm back.  And since I coincidentally have to tell the truth in this entry especially, I went to throw up.  Then I had to change my clothes because while I was brushing my teeth, I noticed that I had missed a little and some went down the front of my t-shirt.  I had to debate on that one--do I want to try and pull that thing off over my head and hurt or just sponge it off and pretend its not there.  Frankly, I would have done the latter, but my husband is home and after all, it is a Holiday.  I'm sure he'll thank his ever-so-attractive wife later.

So let's start there.  Attractiveness.  I'm not.  At all.  And any illusions I once had--gone.  Your family and friends will tell you how beautiful you are and that the mirror isn't accurate.  True story--my husband tells me this all the time.  God bless this man.  Anyway, you know that's not true because you can see for  yourself and because people who don't know you well, or at all, tell you.  Really--in the grocery check-out, at church, at the school.  Once at the check out, I was making what I thought was a great imitation of a person who was "normal" and smiling and joking with the employee.  When we were leaving, she said "I sure hope you feel better soon!"  What?  This how you know.  While its not a big deal that I don't look like Isabella Rosselini (look her up--drop dead gorgeous), it kinda is a big deal to me that I don't have anything left.  I still look like I have two black eyes.  My face is still puffy and blotchy.  I still have to wear long sleeves everywhere I go because I have bruises on my arms and legs.  And I still clean out blobs of hair from the shower drain.  I shouldn't complain because I'm not bald yet and I have a friend fighting cancer who is.  But see--I'm still human and still selfish.  This morning I tried to make my hair look ok, but I just can't spread the hair over the bald spots on the right anymore.  And the gray streaks are making it even worse.  But who has money for a hair cut and color when you're dumping every spare dime into meds, doctors, and vitamins and supplements?  If I had the money, I'd be buying myself an iPad first.  I'm not complaining about the money--but its a universal truth that those with chronic medical care are broke.  Even if you have health insurance (which I don't because no one will touch me), there are so very many untold costs associated with chronic illness, and the costs aren't just financial.  They're emotional, spiritual, family, financial, social...no sense in making lists under each category.

The next truth is that I am an emotional roller coaster and while I wrote about that earlier, I can't seem to get off right now.  Last week I just felt so up.  I was so emotionally positive.  I felt like I was finally taking control and then one morning, I woke up and my brain was back on.  It was GREAT!  Unfortunately, along with that, my dormant snark gene came to life, too and I think that perhaps my family is wishing it would turn itself off.  For example--I live "tweeted" the end of the year awards ceremony for my son's class--just in case someone I know reads this, I will refrain from sharing.  It was one of three things I did last week.  I also sent text messages to a friend I knew was out of town.  Here are the texts--her responses are in parentheses.

I'm in your house--STALKING!

(Hilarious!)

Yeah, where's the chocolate and bubble bath?

(You lovin' my tub?!!)

I would be, but I dropped this big thing with an apple on it in there and now it looks like a jacuzzi but I haven't turned on the power yet.

(R U messing with me?)

Give me a sec...I can't find your robe.

Does your refrigerator usually smoke?

(I'm with [husband] and he said No!)

Oh.  No worries.  We found the fire extinguisher.

(Tell me if your messing with me 'cause I'm totally crying and stressing out.)

No you aren't!  You're messing with me!  Where's the best place for the keg?  The neighbors want to know.

Oh wait.  Not neighbors.  Followed us here from the dumpster behind HEB.  My bad!!

We got your back.  We moved the house number to the neighbors until you have time to file a home owners insurance claim. (The house is for sale.)

Its all good!  Thanks for the hospitality!

Really?  Was this helpful to her?  I decided I didn't have much more to do than to mess with people's minds.  This is not pretty.  I was more snarky about a few other things, but they're PG-13, so I can't really share that.



On Friday I couldn't get out of bed.  Saturday was worse.  By then my lungs were involved and I had a cough plus they felt like they were on fire.  Lungs are nothing to mess with when your life revolves around MCTD.  The end result of my day was being alone in my room, screaming at the doctor and using a swear word combo I have never used before to describe her IQ.  I'd admit to the word, but I think my kids might read this.

Depression sets in, then.  Like it never left.

Yesterday, there was my beautiful sister's blog showing pictures of her with her son at graduation, with him being ordained an Elder (a position in our church) and her grandkids next to her.  I cried.  I wondered if her kids knew how special that was?  Did they all appreciate the time together, the blessings they receive by the gift they have of a mother like her?  I'm sure they do because they are already like that.  And part of me, truth be told, is just plain jealous.

So there you have it.  I'm no saint.  I'm not even good most of the time.  I think I'm supposed to learn that  from this and I am not doing a smash up job.  So yesterday I was determined to go to at least part of church so I could take the Sacrament.  I slimed out of bed and stood there looking at myself in the mirror.  Remember the beginning of my blog?  How much courage did I have today?  I turned around and in my closet was hanging my old red purse.  I wear and accessorize with black, navy, olive green, white.  Boring, boring, boring.  But I love that purse because it's loud and bright and it makes me smile.  So I dumped my stuff out of the old brown one and went dressed in black, with my red purse.  I still had a few people tell me how terrible I looked.  And I came home early.  But I set my red purse on the red table in the entry where I can see it.

Mushy Music and Stuff

I should be writing a blog entry about this weekend that is one of those truth entries.  The ones with the nitty gritty, stuff no one wants to hear about.  But I'm not ready to go there today.  Maybe tomorrow.  In the meantime, this weekend I came across some really great music.  Music is where I go when my head can't take anymore and I feel like I'm going to lose it or just give up.  One of my particular favorite types is rock music done with classical instruments.  For example William Joseph rocking out on the piano to Led Zeppelin's Kashmir.  I discovered a violin player I love--David Garrett.  Check him out on Youtube and search for Smooth Criminal (Michael Jackson) and Thunderstruck (ACDC).  And then there's this song from Rascall Flatts.  Normally, I would have already had this one because I am a big fan, but for some reason the latest album slid in under the radar and I missed it.  When I heard this song, I had to go and get it for myself.  It makes me think of the really wonderful man who has taken all of this on, and continues to do so.  He's not terribly sentimental (OK--not at all), but I know he loves me.   He's the one who won't let go in my life--even when I feel like letting go myself.

Rascal Flatts

Living on the Roller Coaster

When it comes to raising kids with special needs, I might know a few things about it.  It's possible I might even have a few things worth sharing.  But if there's one lesson I've learned well--get off the roller coaster, smile and wave at them from the platform, and let them ride alone!  Today, I realized I'm riding the health roller coaster and I'm pretty much putting it out there--I stink at it getting off it.  Not even kinda'.  I truly, truly stink at it.

Today was a good day.  I got up before 9 am, showered (ok--it was a REALLY good day!), took my schload of vitamins, drank my sludge and was ready to go.  I actually drove into town, enjoyed a wonderful morning with a friend, and then came back home, picked up my kids from school, picked up more veggies for sludge, and then arrived home around 4:30.  This was truly one of my biggest days in many, many moons.  I was tired when I got home, so laid down on the couch.  And couldn't get up.  Period.  No gas for any reason.  The house could have burned down and I would have hoped someone could drop me a glass of water to sip from.  Not to worry!  My brain was still happy!

I was on top of the world--so excited, feeling like I was going to beat this thing.  Enter reality.  A few short moments later.  My brain turned off, too.  As in couldn't remember, couldn't put two words together, couldn't think what I needed to do next.  All I could obsess over was "when do I get to sleep?" I thought I had rounded the corner on that one.

Then I read a horrible headline that came across my news feed.  An 8 year old girl who committed suicide.  She hung herself on a barb wire fence.  I couldn't deal with it.  I wondered how she even knew how to do that.  I wonder what things she saw at home or was exposed to there.  I hated myself for thinking about that way when its more probable that her parents were devastated and in agony.  I wondered what would make an 8 year old want to do that?  I have a short memory.  I already know because my child went through that.  Suddenly, my exhaustion and the length of my day overwhelmed me and I couldn't see the sun anymore.  I started to cry.  Not just for her, but for her mother, my child, myself, all the hurt children in this world.

I received a text from my sister.  "Don't dwell on the negative, stay positive!"  And there I was, seeing myself on the roller coaster again.  Its a constant struggle for me:  staying focused on the positive so that the negative doesn't mess with my mind.  I'm not back yet tonight.  I'm still down there trying to climb out.  Even writing hasn't fixed this.  What I really want to do is cry and cry and cry.  

Why Isn't this Fixed Already? And the Better Question--Why is This Funny?

It's been an entire week on the "new" regimen of vitamins and supplements.  So far, this isn't fixed.  Shouldn't it be?  I have done everything I was supposed to and this week am going to step it up a notch by actually moving around more than just from the bed to the couch and back to the bed.  Next week I should be ready to start some serious training.  Not only am I not completely healed, but my feet and hands look like they have retained half the missing water in the Guadalupe River.  I find this highly annoying.  Friday I spent a great afternoon and evening with my sister doing a whole lot of nothing too important.  It was great.  I think I woke up from my nap following these activites Friday on Sunday afternoon.  This too, is annoying.

A very wise woman I met said that "hindsight is easier because during the trial, all we tend to feel is the trauma." (Kris Belcher)  She was right.  Since I first heard that over a month ago, I have been trying to find the humor where I can. This morning I decided in light of another night of zero hours of sleep, that instead of thinking about how discouraged I am, I would try to find the humor in my situation, then start making a list.  I plan on consulting this list frequently.  I am also guessing that this list is going to take some doing.  So far, I have two things on the list.

1.  Hair.  I am losing my hair--by the handfuls.  It is distressing to me, and I'm sure much more noticeable to me than to others.  However, I am comforted by the fact that those on the areas of my body in which I do NOT want hair (ok--really, who are we kidding here?  The chin.) are intact with all of it hanging in there tough.  It takes a chain saw to saw that stuff out.  I am fortunate, however, that I do not suffer from the same thing that men do as they age--each hair that disappears from the top sprouts out the nose or ears.  This also brings up that whole scriptural passage "not even a hair on your head will be lost."  Really?  In light of plucking, shaving, laser removal, waxing, etc. I'm not completely convinced that this promise was particularly well thought out.

2.  Somewhere in this weekend I did manage to slime out to the store for birthday fixings for my son's 12th birthday and for some organic veggies to juice with.  Which brings me to the second thing I find funny:  juicing--just the whole concept.  To do this, you need a juicer.  These things are the size of small engines and just as shiny.  It sounds like an airplane taking off in a hangar.  You also need veggies.  The concept is this:  if you can't figure out a way to make it palatable, you juice it.  This means that any veggie that no one would ever willingly eat is endowed with supersonic qualities and when juiced is going to make me feel healthier than I've ever felt before.  I smell a small, yet powerful Washington Inedible Vegetable Lobbying group at work here, but whatever.  So the required vegetables are things like spinach (actually don't completely hate that one at least in its solid form) and anything else green:  parsley, kale, collard greens, mustard greens, beet greens--just greens in general.  If this is too bitter, then you can add carrots for sweet.  Really?  Last I checked sweet involved  cocoa beans, six cups of fat and three gallons of pure cane sugar.  Proponents of juicing will tell you that if you add just a "little bit" of fruit, you can't taste the vegetables.  That would be what we call quantum leap logic.  OK--so procedurally, you just mash all this goodness up into a ball, send it down the chute and gag down what comes out the bottom.  It speaks somewhat to the issue at hand that I'm not only willing to do this, but spent money getting stuff to do it with.  Historically speaking, had the Children of Israel had to drink this sludge rather than eat bitter herbs at Passover, they'd still be in Egypt.  Just saying.

Hold on, the Light will Come

Music has always soothed my soul.  It brings me answers, it brings me peace, and it brings me joy.  This morning my Heavenly Father answered my prayers of last night via a simple song.  What follows is the link to the song and the story. For all of us who are waiting for the light in the darkest periods of our lives.

Meridian Magazine - Hold on, the Light will Come

(MP3 to the song is at the end of the article.

The "2 am's"

I have always felt that the 2 am's are the worst.  Nothing prepares you for them.  It doesn't matter whether you are up because you child is making your crazy or because you can't sleep or because this dumb-ass (repenting now!) disease won't let you sleep.  I struggled this morning, had a decent afternoon and evening, and am now sitting in bed typing here because this is part of it, too.  The nights are endless and discouraging.  Everyone around me is sleeping, including my faithful Dakota--my Newfie who takes care of me.  It occurs to me to reach over and smack my husband who sleeps soundly no matter what, but I do refrain.  I have some self control.  Some--not a lot.

When it was "just" insomnia, I watched infomercials.  That stuff looked necessary after awhile!  Then I worried about kids:  was I doing everything I could for them?  Was I the Mom that could help heal them?  Later it was kids again:  my heart breaking in two because theirs were already broken.  I think that's when I learned that a broken heart actually feels broken.  I couldn't breathe.

But now, MCTD has stolen my sleep.  And at 1 am, I find my sense of humor is waning, my pain is growing, and my stamina is taking a breather.  I am extremely dizzy, so I have to wake my husband to go into the bathroom and I'm really glad I didn't smack him.  I'm not sure if others get them, but my mouth is full of sores.  Sometimes I will have them all down my throat, but tonight I am grateful its only about a dozen.  I brush my teeth again and use mouthwash hoping that if I do that enough, the sores will burn up and go away.  I'm not sure if there's any logic in that, but I have nothing else I can do.

I'm also stressing because my daughter, who is in her first couple of months of college far away in Idaho, found out about how sick I am.  Her friend came home for the weekend and saw me at church.  She told her she was shocked at my appearance.  OK, really it isn't that bad, is it?  I don't want anyone to answer that, actually.  My daughter called frustrated because she didn't have a part-time job so she could get a plane ticket and come home.  I told her I looked lousy, but that might just be completely unrelated to the disease and to stop worrying.  The truth is tonight I'm worried about her, but I'm torn, too.  Torn between the worry and the fact that this beautiful daughter cares that much about her Mom.  If others knew her story (and it is hers alone to tell), they would know what a miracle that is.  It melts my heart.

I'm near tears.  I have no reason why except I'm tired, worn out, and want desperately to sleep.  I saw a tweet from a fellow patient who said she was going to go on the lupus walk fundraiser.  I grabbed this computer and thought "I'll go too, it will be my goal!"  Then I realized that I couldn't make right now.  I read the fine print on the web page.  There is no cure.  There is no treatment.  There has been no advances in 51 years in the treatment and medication of lupus.  So now I'm crying.  What if I'm wrong?  What if this is as good as its going to get?  Who will I talk to at this time of night to soothe my soul?

And now I'm ashamed.  Because I know who I talk to.  He who knows my pain, who atoned for my sins and who can heal me.  If it is His will.   So, I'm closing this entry tonight to talk to Him.  I'm not going to ask for this to be taken from me because I don't want to miss the lessons I'm supposed to learn.  But I am going to ask for strength while I learn those lessons and the faith to know that He is directing my life--and then to thank Him for the opportunity I have to grow in this life.  He will heal me when it is time, in His way.  In the meantime, I'm going to ask Him to have just a little more patience while I figure out how to truly submit my life to Him.  Since He is perfect, I'm guessing his patience is, too.

The Spandex Crowd & Hope in a Bottle

Warning!  Run on sentences (My apologies, Mr. Bechtold) and an In-My-Day story!

Looking back, the doctors think I've had this disease since high school.  One year I was so tired I would come home from school and just fall asleep on the bed and sleep every moment I could.  It got to the point where my Mom got worried and took me to the doctor.  (Here's the "in those days" story...)  But in those days, no one went to the doctor unless there was profuse bleeding or exposed bones--still my working definition of an emergency today.  And both of those criteria first run through the "can it be super glued?" test before I decide its a true emergency.  But I digress.  So at this doctor's appointment, no one did any tests.  The doctor asked a few question and then pronounced it mono.  Of course, since The Doctor said it was, it was.  Then there were the endless come-and-go stream of seemingly unrelated things that followed:  lungs (pneumonia, bronchitis, shortness of breath), heart (arrhythmia), arthritis, the female bonanza (botched surgeries and hysterectomy), miscarriages (how many?), muscle and joint pain (in places I had no idea I had), insomnia (at 2 am, those infomercials look positively sane AND necessary), nausea (learned to drive and puke--my definition of multi-tasking), and always the exhaustion.  And I would look around and wonder who the genetic mutants were that always seemed to be bouncing around from one activity to the next.  They were peppy, they slept, and they must be a Freak of Nature.  How many times had I heard "oh, this just ENERGIZES me!  I feel so good when I'm done, I just can't do without it!"  Really?  In my world when I did anything beyond the Necessities of Life, it was a rocking day.  (You know The Necessities of Life:  digging dirty clothes out of the hamper that with Febreeze pass the smell test for school; making sure everything visible from the front door is clean and if you can't do that, leaving the vacuum and/or a strategically placed bottle of cleaner there so it looks like you were just interrupted; and sending your kids to scrape the top layer off their bodies once a month. Swimming pool access is a must.)

This particular class of energized people I referred to as The Spandex Crowd.  You know--the ones that just left the gym:  thin, fit, tan, and OH SO HAPPY!  And wearing spandex.  Which, as another digression--let me point this out.  NO one should wear spandex in public.  If you shouldn't wear it--you shouldn't and we all know what that means.  Most of you who think you can--I say this with all the love in my heart--can't.  If you can wear spandex, we pretty much hate you, so again...just saying.  For the record, my husband is from The Spandex Crowd.  He doesn't wear spandex, but his best time in the marathon (yes, the marathon) is 2:36 or something ridiculously over-achieving like that.  Regarding marathons--I don't even want to drive that far, let alone run it.  I wouldn't drive it, either, but the cost for flying 20 miles to town is prohibitive.  And the ones running it?  My husband has talent, so though he is amazing, he's not half as impressive to me as the ones who run for five or six hours.  They make me cry.  I don't even want to do something I like for that long.

Back to the subject.  The Spandex Crowd and what they represented to me was what I really wanted to be.  I want to jump around in spandex in a Spastic Aerobics class.  I want to be the volunteer at my child's school and think up stupid games they all play at the party so they can get treats at the end.  I want to have the perfect house every Mormon is supposed to aspire to.  (There's a list of these guilt aspirations associated with that I will address later...).  I want to can my dish soap and have a year supply of plastic grape flower arrangements for my family!  (Did you know if you rip those little suckers off the vine that kids will chew on those things forever?  Not my original idea, but my kids have been ripping them off my mother-in-law's for years.)  The only thing keeping my sense of sanity intact was that with the notable exception of one sister (you know who you are!), the rest of us all have insomnia.  So, it must be the insomnia, right?  If could sleep, I'd be in The Spandex Crowd and could teach a community workshop on How To Be Like Me in whatever subject--just pick one, I would have it mastered.  This, however, never happened.

Each time I would go to the doctor, I received my Hope in a Bottle.  Meds for sleeping.  Meds for pain.  Meds for female stuff.  Meds for infections.  Meds for seizures (?? I have no idea why, either.)  Meds for my heart.  Every time I came home with great hope, just sure that this time, the meds were going to work.  And every time I ditched them eventually because not once did I ever get a med that made me feel better.  In fact, the more I took, the worse I felt.  This has been a constant throughout the last 20 plus years.  In this last relapse though, I determined I would take everything the doctor prescribed because this time was different.  I have been much more sick and therefore, these meds were going to be much better.  (Let's not even get into the logic of that leap.) I went back every few weeks not any better.  They switched out all the meds, swapping them for something a little stronger.  And I dutifully took them all.  Each time I have come home from The Doctor with my Hope in a Bottle.  At this point, it appears that my Hope in a Bottle should have been vodka, if I drank any alcohol.  I'm pretty sure it would have made me feel better, at least.

Last week I went to The Doctor.  I had been telling her for the last few visits that I was really nauseated. I am always nauseated, but I felt one of the meds was adding its "may cause nausea" to my "always slightly nauseated" for a "nausea guaranteed to drag your colon through your nose" kind of situation.  And while I was happy with the ten pound weight loss in 9 days, I'm pretty sure that isn't the kind of weight loss The Spandex Crowd would be recommending.  The Doctor kept telling me that "nausea isn't part of the disease."  So far, I haven't found a single person with lupus or MCTD who isn't nauseated.  And I proved it--right into her garbage can; or at least most of it went in there.  It wasn't on purpose, but really, can you fault the timing?  She dropped the meds, and wrote out prescriptions for all sorts of new and wonderous Hope in a Bottle--right after her leizurely dash for the door for a deep breathing of clean air moment.  These particular new meds were clearly targeted only at the symptoms and were hitting the narcotics range.  I thought back over all the meds she had prescribed and I realized not one of them was targeted at fixing anything.  It struck me then, though I should have received the lightbulb moment a lot earlier.  (In my defense, my brain is a fog and I'm 45.)  She didn't know what to do, either.  So she was just hitting it harder and harder and hoping the Hope in a Bottle did its job.  Which it wasn't, so she described the next round of meds.  My next subtle threat was to begin in July if this latest set of Suppress-the-Symptoms-Can't-Cure-It-Hope-In-A-Bottle didn't work.

I came home from that appointment and thought "No WAY!"  I'm done.  I'm done with letting someone else tell me what to do.  I'm done with taking all these toxins into my body that clearly were not helping, and truth be told, made me feel like I was losing control and getting sicker.  I'm done with not knowing why, how, or when this disease was going to drag me down its nasty little path.  Let me point out here, I am a swift learner.  You can't say it took me over 28 years to come up with this.  You can really only say 14 or so since I was diagnosed with lupus.  I'm a quick study.  It was time for me to find my own way and become my own advocate.  So I started flushing.  If you are from the Save the World Environmentalist camp, I polluted your water.  Get over it.  Enjoy the rewards:  with any luck next time you drink a glass of water you'll get high.  My sincere apologies.

Now I'm onto the next Hope in a Bottle series, but one I have decided on for myself.  I researched for hours and came up with a list of all the vitamins and minerals and foods that target the various problems with my immune system, and therefore my body.  I met with a nutritional specialist.  I gleaned off a list from a fellow MCTD wunderkind (really--truly amazing). I took the money I was going to spend on meds and bought a large shopping bag full of Hope in a Bottle and devised my own plan between healthy eating (and not just the food pyramids guide, but back to nature whole foods) and supplements.  I even started adding aloe to my water to see if it will help heal my esophagus and intestines.  Its not as nasty as I thought it would be, but its not good, either.  I tend to go at things full tilt, so I may possibly have gotten carried away.  Possibly.  The nice part of this is I rarely need to eat since the sheer volume of vitamins fills me up for several days.  I have no idea where this is going to go and I am really a guinea pig for the whole idea.  But I figure at least this time, my Hope in a Bottle is something I feel excited about and I chose it.  I was so excited, I didn't take my naps and was up all day yesterday.  Of course, since I feel I must tell the truth here, I am a mess today and I'm pretty sure I used all my spoons for the next two days in one afternoon.  But still.  I have hope.  And I'm pretty sure its because I am taking control and not because of the bottles.

Why? A PS To Today

It's only been about eight hours since I launched my blog.  And the question I am being asked most is "why?"  Why put yourself out there?  Why share such personal details? (My poor Mom!  She should be so proud!)  I'm sure no one was waiting to hear what kind of bodily function mishaps I've been having!

I thought about this a lot before I decided to write.  I could stay away from the the subject all together.  I could write, but be much more vague and general. Or I could tell the truth in more detail.  I chose option three, because out there are others who are suffering much more than I am.  And they are alone, feeling sucked into the black hole and wondering if anyone else can really relate to what they live with.  I'm here to tell you that, yup!  Been there, done that!  You have nothing to be embarrassed about, because I have already done it!  And really, what more fitting place than Wal-Mart?  Bet you won't see that on peopleofwalmart.com!

Sunday I got up my courage and went to church.  I shuffled through my meetings, hiding out in the back.  Finally, at the end of the meetings, a lovely woman came up to me and said "I just have to ask!  What kind of terrible surgery are you recovering from?"  My first reaction was "It was a boob job, can't you tell?"  I paused, fumbled around a little, and told her the truth.  It stunk, actually.  It was not cathartic--at least not at that moment.  I would rather have had the surgery.  I certainly am not a great person and not much of an angel.  I'm pretty sure angels don't talk to themselves about how stupid the whole thing is laced with a few swear words to fill in the pauses.  I'm working on that.  But its down the list. And I'm darn sure angels are less of a whiner than I am.  I hear stories all the time about this wonderful person who had a horrible disease and never complained once and had a smile on their face the whole time--right up until the day they died.  I'm here to tell you, that's not me.  I'm whining and mouthing off all the way, but at least those who are there to hear it know I am without a doubt fighting back.  And who are these saints anyway?  I don't believe it.  Just sayin'.  Maybe.  But I'm betting they got ticked off about it, too.  Perhaps they don't show it in quite the same way I do and have thereby earned their Sainthood.

So I'm going to tell the truth and hope that others will find that someone else knows what its really like.  Already I have heard from people whose lives or lives of those they know have been affected by an autoimmune disease.  I hope they come.  Certainly they are going to feel much better about themselves after they read!  And hopefully they will feel someone out there cares about them.  Because I do.  After all, why else would I share the reason I shop only at Target now? 

The Spoon Theory written by Christine Miserandino

Often, its hard to figure out what its like when a loved one (or someone you kinda' like, anyway!) is living with a chronic illness. This story got me right between the eyeballs. Not only was it a good analogy for my friends and family to understand, but it described me--right down to the soup and the hair loss.

The Spoon Theory written by Christine Miserandino

Taking Back My Life!

14 years ago I was diagnosed with lupus. A year ago that diagnosis was changed to MCTD. Today, I am taking back my life. This blog is my journey.


Lupus didn't change my life that much--at least not as much as it could have. I had tests for my kidneys. Tests for my antibodies. Tests for my heart and lungs. Tests to determine if more tests were needed. I took meds, starting with Prednisone on which I gained many, many pounds and a dark feeling in my soul. I dropped the Prednisone, dropped the dark feeling, and dropped the doctor. I found a DO who would prescribe meds and help me do natural remedies. I was sore, I was tired, I had Reynaud's and I learned about RA (rheumatoid arthritis). I had periods of time when I was exhausted and friends brought in dinner and mopped my floor.  


I told my parents I had lupus; I might have told some of my siblings, but I am not sure anymore. I know I said little to them. Mostly, I went along refusing to deal with the disease and refusing to see it play out in my life. I was uneducated and I didn't care. When I had a "flare," I decided I was just tired or just over-extended. When I had surgeries and I bled out, I refused to see any connection between them. If you asked me how one got lupus, what the blood tests were, or how it progressed, I wouldn't have been able to answer. I even glibly told my parents not to worry because I didn't have "systemic" lupus. In my mind, no kidney involvement, no systemic.



That changed for me, though I didn't realize it, about four years ago when I first began to notice my heart rhythm. If you notice it, it's not normal. The rest of the world just moves along not thinking about the fact that your heart is beating away inside of you, performing its functions. Shortly after my heart gave notice it was there, I began to have unexplained pain in my muscles--almost as if the muscle were torn. Then I could no longer wear contacts because I had "dry eye." I began to have shortness-of-breath, even while laying down. At times it would wake me up. This was followed shortly by increased arthritis, no longer confined to my hands and hips, but now in elbows, my back, and my feet. And the exhaustion--always the exhaustion. The mind-numbing, at-the-core, spirit sucking exhaustion that made it impossible to think, let alone move. As each symptom came along, I continued to ignore it.


A year and a half ago, in my primary care physician's office, he told me he wanted me to go see a rheumatologist for "my" lupus. Because by that time, I had taken ownership of it--almost like a pet, except slowly, almost insidiously, it was beginning to own me. Off to the new doctor--who ran a few tests and told me that I was depressed, needed to lose weight, and to get on an anti-depressant. In fact, I believe his exact words were "you're just depressed and fat and need to go on a diet." I don't think it takes a genius to figure out I was destroyed. I retreated. Three months later, I put a toe out and went back to my primary care physician to report what the "specialist" had said, to swallow my pride and ask for an anti-depressant. He sent me to a new rheumatologist.



While I am always the authority on anything my kids need or suffer from, I knew nothing about my own health. If a doctor told me my child had a disease, I would have researched, gotten a second opinion, taken charge and "stormed the castle" in their behalf. When it came to me, I meekly accepted that it must all be in my head and that of course, The Doctor Was Right. God watched over me though, and my PCP (Primary Care Physician) disagreed for me. Off to the new doctor I went; who ordered new testing. 12 vials of blood later and a joke from the tech about "having enough to get home on," I wandered home, waiting for the next thing to happen "to" me.


"You have Mixed Connective Tissue Disease," she said. As far as I could tell, it was apples and oranges: one auto-immune disease was as good as another. And MCTD seemed like a step up. After all--it just sounded like my ligaments and tendons weren't happy and how great is that?! I reported the change in diagnosis to my parents and to my sister, telling them it didn't mean anything, it really was just a new name for an old disease.
 I continued to get more and more sick until just over a month ago, I fell apart. I had hidden this well up to then. I chose carefully the days I would visit my sister. I called my parents only intermittently, afraid my Mom would hear a difference in my voice. I did my best to hide it from my husband by slopping something in a crockpot that resembled dinner so I could say I was still taking care of my family. He lived with me every day, but I somehow thought he didn't know. I waited till the house was asleep, exhausted yet unable to sleep, to cry.


Last month in the doctor's office yet again, after failing again with the "old" meds, my doctor explained that she would give the new meds until July, at which time they would have to "get more aggressive."  I could no longer hide nor handle this alone. This disease, step by step had robbed me of myself and everything I believed I was: a strong, healthy, and physical being. "My" disease had come to define me. 


In a few short months, I have become this person. Each morning, I am unable to get up out of bed for two reasons: I am too tired from not being able to sleep and I am in too much pain. The pain is excruciating at times. My shoulder feels as if it has been dislocated, my joints are swollen and painful, my muscles feel as if they are torn and on fire. I debate how badly I need to use the bathroom to determine if I can stay in bed just a little while longer. Some mornings it is 10 or 11 before I can muster up the courage to take the few steps to the bathroom or face the possibility I will fall out of bed when trying to get up; leading to another round of swearing and yelling at the pain. Each morning, my husband cuts up a small bowl of fruit and puts it on the nightstand for me. Some mornings I can eat it, some mornings I can't. After I eat it and take my meds, I often times will throw it up. I have scleroderma in my esophagus. Remember the "dry eye?" Turns out I have Sjogren's Syndrome which means the exocrine glands don't work: not enough tears, not enough saliva. Between the scleroderma, the Sjogren's and the nausea, I can only eat 1/2 cup to 1 cup of food per day, and some days not even that.


I spend the rest of the day recuperating from my morning. I sleep in small snatches. The pain is too great to sleep well. I can't sleep on my side because of my shoulders and the hips. I can't sleep on my stomach because of my back and the gravity on my shoulders. I can't sleep on my back because it pulls the joints of my body. So I toss and turn, pulling pillows here and there. When I finally do fall asleep, my husband tells me I cry in my sleep every time I move. I've offered to move into a spare bed, but he isn't interested. During the day I also try and do the crock-pot. It helps me feel like I'm still a Mom.


In the afternoon, I walk out to the car to pick my kids up from the bus stop. Walking for me is no longer easy. Often, I shuffle when I walk. I have difficulty getting up and down stairs and often need help. I am dizzy all the time. If I am not in bed by 9 pm at night, the night meds and the exhaustion make me so tired and so dizzy that I cannot walk without my husband's assistance. I fall down the stairs, trip on carpets, trip on tiles, and trip on nothing at all. I once fell in the parking lot at the school after my son's choir program. There were approximately 100 people there, all staring. My son turned around and yelled "She's ok!  Turn around!"  He was 10 and had become an apologist for his Mom.  Unfortunately, that has not been the only time I fell in public.



I have horrible headaches. Is it lack of sleep or the disease? Or both? My eyesight has deteriorated to tri-focals. The tendons in my feet are so tight that they feel like bone and I cannot wear most shoes because of the pain. One of my favorite activities, reading, is no longer possible because I could no longer concentrate or make sense of what I am reading. Other hobbies are also not possible: the computer (too heavy and difficult to sit in the position necessary to use it), knitting and hand quilting (no brain power, no ability to use my hands because of pain, and too heavy to hold up when using the materials) and certainly not the outdoors because the sun is a trigger for this disease.


And the indignities of the disease! In addition to falling in public, I have problems with my bowels and once pooped all over myself at Wal-Mart because I could not make it 30 feet to the public restroom. It ran down into my shoes, and all over the floor. I cried. It happened in the car, too, and my husband cleaned it up. He's also cleaned up vomit. I am afraid to go anywhere without a restroom close by and have quit doing things I like in case there isn't a bathroom there. I don't like to go out in public with my husband because I am embarrassed for him.  More than half of my hair has fallen out with bald spots showing through. I cried then, too.


Clinically, MCTD is an overlap disease, which means that I suffer from the symptoms of lupus, rheumatoid arthritis, polymysitis, dermatomyositis, Reynauds, Sjogren's and scleroderma. And the f-bomb: Fibromyalgia. I was determined not to have that. I argued with the doctor because we all know *that* is a disease for hypochondriacs, right? The doctor finally stood up, walked over to me, started pushing on points on my body and when I jerked and cried out in pain, said "People only do that with fibromyalgia. Get educated." MCTD is a rare disease, and there is no cure and little literature. In short, MCTD has come to define me: my nights, my days, my every moment. It has come to determine my life. It is in charge and my soul is lost in the process.


One night, I found out that a dear friend's husband had an affair. She has been married almost as long as I have. Though thin and fit, she decided on a tummy tuck in order to make herself feel better, though I am not sure she knew that was why she was doing it. I looked at myself in the mirror. My hair hung dull, lifeless and thin. My eyes were hollow and with large purple rings around them, as if they were bruised. My skin was pale and I knew. I was never beautiful to begin with, but now I was a broken, ugly woman. Why, if this beautiful woman had a problem in her life, would my husband want me? That's the night I picked up the phone and sobbing, called my parents to tell them all about "me."


That night was probably the lowest point in my life. I had cut out family, friends, and most importantly, my Heavenly Father. But that's the night the Spirit inside of me decided to take back my life. I knew my husband wasn't going to hurt me or leave me and that he loved me. But I could not see past the darkness I had allowed to grow inside of me. When I picked up the phone, a small sliver of light appeared in the dark. I spent the next week calling my siblings and closest friends, one by one. I researched the Internet digging for people who had the disease: positive people, people who were winning. I started a twitter account, sending tweets out into cyberspace about MCTD.  Eventually I found a few individuals and I started asking questions, writing down ideas. I met with a trainer to help me begin a physical fitness program. I met with a nutritionist to work on my diet. Slowly the crack is turning into a window. Maybe tomorrow it will be a door.


But today is the day I start. Today is the day I take charge. This disease is no longer "My MCTD." It is just MCTD; a side note in my life. Today is the day I begin to share the story, in all its dirty details. Because somewhere out there is a person who is drowning, alone, just like I am. And even if this doesn't reach them, at least it will reach and give courage to the one person I need to reach: myself.