Friday, April 16, 2010

Are you ready to be well? Are you listening?

Are you ready to be well? Are you listening?
For those of you who do not have the energy or desire to read all of the books I've recommended, due to health problems, or lack of time, or you simply have a desire to implement quickly all of the truths we've implemented into our lives, using your faith (without reading the books), I feel like I need to summarize all of the things we learned. 

This blog entry started out with the above intention, but evolved into something else.  I'll leave it as it is, but will make another entry to discuss the above idea.

First Truth

MEN ARE THAT THEY MIGHT HAVE JOY.   I believe this also means that we should "Run and not be weary, walk and not faint". 

Do you want to live?  Do you really truly want to be healthy?  Would life be easier for you if you could just give up and let others do the work for you?

These are questions I had to ask myself before getting well.  I had been so sick for so long and was getting so weak that I started to apathy towards living at all.  I just didn't care anymore.  I just wanted to lay down, go to sleep and never wake up.  My body was unable to get nourishment, even though I was eating.  Nothing of value was soaking into my cells to give me life.  My new prayer.... "God, please give me the desire to be well".   The doctor's had given up; my parents didn't know what to was up to me to turn to God for answers.  As recommended by a friend, I did fast and I did pray - and went to the Temple to be close to God to listen and to pray.   A full account of this story you can read in "My Story" in another blog entry.  Answers did come in an unexpected way, but this time there was a change.  The change was that I... (Emphasize "I") was now ready to HEAR the answer.  The woman that told me about her brother and how identical our stories were was also a huge blessing in that she didn't simply tell me the story, but she went to work contacting her brother-in-law and he (bless his soul) in return mailed me many Celiac brochures and literature that I was able to start the path to wellness.  My doctor's response to everything was a little comical.  He threw up his hands in the air and exclaimed "we've found our answer!"  He went on to explain that he could "have me tested, but that would require me getting back on gluten".  He recommended NOT getting the test.  (I'll talk about how wrong this was to do and will explain latter).

So, for those of you who are sick, or for those of you who have loved ones who are sick, are YOU ready to HEAR?  Two different individuals (friends of mine) had told me about me possibly having "an allergy to wheat" many months before I was ready to hear.  I listened, but absolutely ignored that "crazy idea".  My symptoms didn't go along with any of the symptoms of the individuals who had "Celiac Disease (gluten-intolerance) that I'd heard about and so I dismissed the urging from my two friends to be tested.

So, you've read "My Story" in this blog, your symptoms are not the same... could you possibly have Celiac Disease?  There's a book titled "Celiac Disease, a Hidden Epidemic".  In this book, the Doctor talks about how varied the symptoms of the disease are.  My Grandmother has the typical symptoms and was diagnosed quickly. She had the bloating, diarrhea, sudden loss of weight etc.  Mine, however, started with the symptoms my Grandmother had (while I was serving my mission in Chile), and the problem with always being sick (immune system compromised), but then went to the extreme fatigue, constipation, loss of memory, and so I was DIAGNOSED with DEPRESSION (was the first diagnosis).  Thank goodness I never took the medicine.  2nd, I was sent to a Neurologist Expert at the U of U who diagnosed me with EPSTEIN BARRE.  Then another doctor in Provo (a specialist) DIAGNOSED me with FIBROMYALGIA.  Another said it was CHRONIC FATIGUE.   I had been to so many specialists.  Interestingly enough, the famous Celiac Dr. Karnam I had an appointment with but he had to travel to India for some reason and so my appointment was cancelled.  He is considered the "Celiac Expert or the Gut Whisperer". Anyway, that is an entirely different story.

As I've sat in Celiac Support Groups, I've listened to SOOOOOOOO many different individuals whose symptoms are so varied.  Scientists are beginning to find how Celiac Disease, untreated, can lead to neurological disorders like Multiple Sclerosis, Dementia, Schizophrenia, Down Syndrome (children of Celiac Parents) etc.  My Grandmother and I have had many conversations about Celiac Disease, but the one conversation I will remember the most was hauntingly familiar with a discussion I had with my dad almost 15 years ago.  I'll explain...

Conversation with my Dad...

I was taking a course at BYU from Dr. Scoresby that was about Family Relations and Child Development.  At his suggestion, we were to write down questions to ask our parents, and to take into consideration the events surrounding their lives that they would be most familiar with.  I wrote my list and was please when I was invited by my Dad to go down (from Provo) to Fillmore to visit my siblings.  "Perfect!" I thought..."This will be a great time to ask my Dad all those questions".  The 2 hour drive (my Dad drove REALLY slow) provided ample time for the discussion.  So, the questions began and I wrote down answers.  Sadly, I do not recall the answers to any of the questions EXCEPT for two.  The first question I asked was "Dad, what is your greatest LOVE?"  I was positive that I knew the answer to this one.  I eagerly anticipated that he'd say "You, Joey, Kirsten and Stacie" (His Kids), since all his life he was constantly sacrificing all he had so that we could have what we had.  His answer surprised me.  It was, "The Savior".  A little surprised, and taken back - honestly a little jealous as well, I jotted down his response.  "Ok Dad, my next question is....What is your greatest FEAR?" His response also surprised me.  He went on to explain that his greatest fear was "His Depression". I sat in silence as he explained that he never knew when it was going to hit and he never knew how long it would last.  I sat there as the feeling in the car was extremely melancholy.  My thoughts raced back to how he had hospitalized himself several times in order to understand more clearly and to treat the "Bi-Polar Depression" (plague) that afflicted his life so much.  I left my Dad to his own thoughts as he probably thought about his marriages gone bad, the choices he'd made during his terrible down times, etc.  I knew that he loved my Mom.  I saw the sadness in his eyes when he looked at her.  He never said anything negative about her, and they had had many happy years together, but I knew from Mom's account that she was scared of the highs and lows and for the safety of her kids, she left Dad when we were just 5,3, and 1. 
The feeling of that moment hung in the air for a very long time.  We sat in silence as both of us were somewhat lost in our own thoughts.  I'll never forget that day, and I'll never forget that feeling.

Now on to my Grandmother and I's conversation about 15 years forward...

When I'm with my Grandmother (Nana) and Grandfather (Granddaddy) from Texas, there is never a dull moment.  They are the funniest people I have ever met.  The witty South Carolina beauty, and the 100% male retired military Colonel make quite the pair as Granddad always corrects Nana on not saying everything 100% perfect and she light heartedly jokes back at his Military ways - making everyone laugh.  They have so many friends all around the world who love them dearly - as do I.  So, usually our conversation is not about serious things.  The death of Dad is never discussed as there is too much heartache attached to it.  I have to be really careful when I look at the old picture books.  Once, a question about Dad upset Nana so badly that she left the room and Granddad was left to advise me to "never bring up any questions about your Dad... It's too painful".  So, when Nana or Granddad freely talk about "Serious Things", my ears are open as much as possible- since it happens rarely. 

So that "Rare Event" came one day.  It wasn't a discussion about Dad, but more about the dark side of the effects of eating gluten- of the mental anguish. She said that it was easy to recover physically from the effects of gluten, but that it was "harder to recover mentally".  I knew exactly what she meant.  I knew that the couple of days following the ingestion of gluten, I had to pray to know what was "the gluten talking" and what was "real".  Let me explain a little more using the example of the last time I got gluten on accident...

Shane and I had taken the kids to eat at a Thai restaurant in SLC called "Thaifoon".  They have a gluten-free menu and I'd eaten there before, without any problems, but for whatever reason, perhaps they accidentally poured a "gluten-filled" sauce on my food by mistake?  Perhaps an unknowledgeable chef cooked my food with the same spoon as another entry that had gluten in it?  Etc. Etc.....there are so many reasons why I could have gotten sick.  Anyway, I was so sick the next day that I couldn't move.  My kids had to bring me my food and water throughout the day.  The next day my legs were moving, but I didn't have my mind back yet.  Anything the kids did was too much for me to bear.  As much as I knew in my mind it was the gluten, I yelled nearly the entire day and of course felt broken hearted that the kids took such good care of me and then to show my gratitude I just yelled like a drill sergeant while we worked to clean up the previous days mess caused by the kids having free reign of the house.  I called my husband around 4:00pm crying asking him to please come and help.  He left around 5:30 and returned around 6pm to help get food for the kids, but the house was still a disaster and I had used all the strength I had and was lifeless on the couch when he found me.  I could sense Shane's irritability with having worked all day and then having to come home to help with me and the kids.  Sensing this, my heart was broken and all I could do was cry.  When bed time came, I weakly climbed the stairs and went into the guest bedroom to sleep.  I cried and cried and lay there as the crazy thoughts of depression and worthlessness swirled around in my mind.  I knew it was the gluten, but yet it felt so real.  Would my family be better without me?  Could I possibly end my life without causing further pain to anyone....NO, I knew the pain my Dad had caused his kids by leaving, but my heart and mind fought to maintain their sanity.  Should I just leave?  Would me kids be better without me?  I'd be heartbroken to see someone else raising me kids, but maybe that would be best for everyone....  I cried thinking about how the kids would resent me leaving and wouldn't understand that I was doing it because I loved them, not that I was giving up.  Sometimes the depression has been so bad in the past that I've thought about driving to Vegas and giving my life over and losing it by numbing out the entire world.  I could feel loved by strangers.  I would be a vagabond on the streets.  I didn't want anyone to have the burden of taking care of me.  I'd just disappear and either life of the land or die somewhere alone.

After a long struggle with the thoughts and reality I made the decision to go and talk to Shane.  I explained to him that when I get gluten and I'm in the process of recovery is when I really need him to help me remember that it's not me, but the gluten talking and to remember who Steffanie really is.  Please remind me that I'm a good mother, I'm a wonderful wife, the house is clean and organized, the kids are well dressed and cared for, etc. etc.  Shane apologized and held me as I cried until I fell asleep.  He held me in my own little state of "HELL" in my mind, and helped me until the light of the morning came with its resurrection of Mind and Body.  So, it is usually the third day that I feel fully recovered, and the light returns.  Nana and I had a common experience of going through the "Hell" to get our minds back.  We both had a tiny glimpse of what my father must have experienced with his depression.  I understand now why it was his greatest fear- it is my greatest fear now as well.

A friend of mine, from High School, ended his life a little over a year ago.  I hadn't mourned my Dad's loss for nearly 10 years - because I just stuffed everything inside me and went on with life, with caring for the 15 families that were working for us, for the siblings needing support etc.  I screamed until my voice was gone, I cried a lot - yes, but then I just locked the door to my emotions and put the key in my pocket.  It wasn't until the death of my friend, dying in such a tragic way, that I unlocked the door to all of those emotions and let them out.  I cried nearly non-stop for three days.  I'm not kidding.  I cried and didn't feel like eating.  I would wake up my husband at night because of my sobbing.  At the end of the three days I was so weak and sick that I kept dry heaving (trying to vomit).  The sickness and sadness I could feel in every cell of my body and I prayed that I could just throw it all up, but I couldn't.  Symbolically again (three days) just like the resurrection of the Savior, I fell to my knees.  I don't think I prayed for anything, I just remained on my knees crying until I didn't have the desire to throw-up any longer.  I don't recall anything other than that at a certain point in time it was finished.  I had mourned and I could go on with my day.

The weeks that have followed haven't been easy.  It's amazing how I can go through my weekly duties without feeling any emotion or sadness, but for the past several weeks I've sat down in Relief Society (Church class for Women) and the tears start falling.  I can't explain why, but that room, and the love that I feel from everyone around me causes the tears to fall, I hold back from sobbing, but the tears fall freely the entire time of the class.  People come up later to give me hugs and all I can do is blame it on "Pregnancy Hormones".  Perhaps it is, but those I trust most know that I really miss my Dad.  I really wish that he would have held out a little longer until I could have helped him to get on a Gluten-Free diet, but not just a Gluten-Free Diet with processed food, but a Gluten-Free diet that is "Naturally Gluten-Free".  No sugar, no refined flours, no meat or dairy from the regular food stores, only the purest form of food as close to the earth and as carefully planted and harvested as possible.  I wish he would have held on.
So if any of you reading this have felt something, I pray that you will continue to hold on to the belief that God DOES want you to live AND to have JOY.  My next entry will be a summary of the advice that I'd give to my Dad if he were still alive to receive the instructions.

My prayers are with you....

(Steffi is what my Dad called me- I didn't like it when anyone other than my Dad or Sister Stacie called me Steffi)

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