Archives for November 2013

Gratitude Giveaways – $10 Amazon Gift Card or Paypal Cash

Welcome to Gratitude Giveaways

This is a hop I host on my book blog I Am A Reader, Not A Writer

gratitude 2013

 

My Giveaway – Winner’s choice of either a $10 Amazon Gift Card or $10 in Paypal Cash.

amazon gift card

 

paypal cash

Please note there is only 1 entry per person.  

 

Please enter via the rafflecopter below only once.  

You have 3 options to enter – follow on facebook, tweet OR follow via bloglovin’ or email.  Winning entry will be verified and multiple entries will be disqualified.

a Rafflecopter giveaway

 

Open only to those who can legally enter, receive and use an Amazon.com Gift Code or Paypal Cash. Winning Entry will be verified prior to prize being awarded. No purchase necessary. You must be 18 or older to enter or have your parent enter for you. The winner will be chosen by rafflecopter and announced here as well as emailed and will have 48 hours to respond or a new winner will be chosen. This giveaway is in no way associated with Facebook, Twitter, Rafflecopter or any other entity unless otherwise specified. The number of eligible entries received determines the odds of winning. Giveaway was organized by Kathy from I Am A Reader, Not A Writer and sponsored by the participating authors & bloggers. VOID WHERE PROHIBITED BY LAW.

Nearly 200 Blogs are each hosting a giveaway as part of this hop. To enter the other giveaways please visit I AM A READER, NOT A WRITER.

Riding a Roller Coaster…

Living with mental illness truly feels like riding a roller coaster.

 

roller coaster

Ups, downs, highs, lows, twists and turns…

That about sums up our life for the past few years.  There are moments of feeling like you are on top of the world followed by heart pounding, stomach clenching, nauseating moments of fear.

As a kid I loved riding roller coasters. I no longer enjoy them like I once did.  Most of them give me a headache.  But I ride them anyway because my kids enjoy them.

Today I’m loving the roller coaster ride and feel like I’m on top of the world.  One of the things my son has suffered from is OCD.  His particular form of OCD is called Scrupulosity. Scrupulosity is characterized by pathological guilt about moral or religious issues.  It’s brutal for someone raised in an LDS culture. Any unclean thought he has must be because he is unworthy, wicked, a sinner who is going to outer darkness…. It’s truly heartbreaking to see someone take a gospel of “good news” and turn it into something that torments them.

For example, my son is very literal and takes everything he reads in scripture literally.

So take a scripture like this one…

3 Nephi 18:28-29

And now behold, this is the commandment which I give unto you, that ye shall not suffer any one knowingly to partake of my flesh and blood unworthily, when ye shall minister it;

For whoso eateth and drinketh my flesh and blood unworthily eateth and drinketh damnation to his soul; therefore if ye know that a man is unworthy to eat and drink of my flesh and blood ye shall forbid him.

Taking the sacrament each week is something that is hard for him because he thinks he is unworthy.  If he takes it then he is bringing damnation to his soul.

Temple attendance is another thing he struggles with because no unclean thing should enter the temple.

It has been about 7 months since he last went to the temple.  He used to go every week.  The last time he went he had a panic attack while there because he felt he had entered the temple unworthily.  He has not been back since… until yesterday. Yesterday he came to me and said “I think I should trust bishop that I am worthy and go to the temple”. Hallelujah!  We changed into Sunday clothes and I went with him.  All went well.  He woke up this morning and wanted to back again so we did.

Once again I’m thankful for a tender mercy.  I don’t know what tomorrow will bring.  It may be another low.  But for today I’m grateful for the highs.  We’ve had two good days in a row. We had 3 good days last week.  My fingers are crossed that a season of peace is headed our way!

 

The Rest of the Story… Break a Leg

In June of last year I broke my leg. I posted a little about it on my book blog because I was unable to get my scheduled posts up.

June 5th Post:

I fell yesterday and broke both bones in my leg just above my ankle last night and had to have surgery. I am in the hospital and thus unable to get any posts up.

June 7th Post:

I’ve struggled to get this post up because I’ve been in the hospital. I haven’t had any computer access so I’m sorry this is late!

I’m reading the book Cinder by Marissa Meyer right now. It seems like an appropriate book to offer for giveaway as I’m feeling a little cyborg like with all the titanium that is now a permanent part of me.

leg

leg2

My own leg reminds me a lot of the cover of Cinder!

cinder

 

For the most part that was all I shared publicly about my injury.

Here is the rest of the story…

 

You are going to have to forgive how I look in this picture.  My brother took this picture last month outside the doors to the emergency room.  It had been a long 24 hours prior to this picture being taken and I’d had no sleep and no shower. Make up, food and clean clothes had not hit the top of my priority list that day.

My son had just compulsively walked/ran 56 miles without taking food and water with him. I had finally gotten him to the hospital and my brother had come to pick up my daughter who was with us. He asked where I had broken my leg and I “posed” for a picture which he titled “Break a Leg” when he sent it to me.

break a leg

Many know that last summer I broke my leg while taking my son to the hospital. April & May of 2012 were rough for my son. He had done well the beginning of the year but by Mid-April it was like a switch had flipped and things were not going well. We struggled to get him to finish up school. When summer break came things did not improve. We were working with a couple doctors but things were getting worse instead of better.  He was not sleeping and his anxieties were high.

On Sunday June 3rd we had asked our family and friends to fast with us on behalf of Brett.  That night he did not sleep at all.

By Monday afternoon I was worried as he just wasn’t right.  The medication we gave him seemed to have had the opposite effect of what it should have done and amped him up instead of bringing him down. I looked at him and noticed one eye was dilated and the other was not.  It didn’t matter if we changed the lighting it remained that way and it concerned me.  I called the doctor for his advice which was “I hate to say it but I really think you need to take him into the hospital”.

So my husband and I loaded him into the car and got him to the emergency room.  My husband ran on ahead and told them we were bringing my son in who needed immediate attention then came back to the car to help me get my son inside.

We got him inside the main doors of the emergency room and the double doors opened with staff who were coming to take him back to a room.  It freaked him out to see so many people coming towards him and he turned and ran out the doors into the foyer where this picture was taken.  My husband was on one side of him and I on the other.  Unfortunately because he had passed through the main entry doors of the hospital and he was no longer considered in the emergency room of the hospital so the staff couldn’t help us.  They told us their policy stated they couldn’t intervene until we had him back in the actual hospital. So we attempted to get him to come with us the few feet we needed him to move forward to be inside the hospital so they could help him.  He tried to turn and run towards the car and as we held on to his arms we all went down in a heap.  I was on top but had broken both bones in my leg.  It was a total accident, one which I still don’t understand how it happened. One of my friends once told someone my son had broken my leg and I about freaked upon hearing that.  It’s probably the reason I’ve hesitated sharing the story because I would never want anyone to blame my son for my broken leg.  He’s blamed himself enough as it is.

So there we were, the three of us on the ground with my bones sticking out of my leg just above my ankle.  My son was distraught that I had been hurt and was asking if he had broken my leg.  Hospital policy no longer applied and we had tons of help.  Staff came to help me into a wheelchair and I remember saying I’m fine, it’s just a broken leg, help my son first.  I was not in any pain and my only concern was that my son be taken care of.  My leg would heal but I didn’t know what was going to happen with him.

They insisted and got me into a wheelchair and once I was assured my son was safe they wheeled me back into the emergency room. If you are going to break a leg the entry way to the emergency room is the perfect place to do it. I had the best possible care quicker than you can imagine.  I had so much adrenalin in my system that the only time I really felt the pain was when they had to pull my leg back into place to put a splint on it.

I insisted my husband stay with our son and take care of his needs.  He was eventually settled and sleeping.  I was taken into surgery later that night and by just after midnight had a permanent rod in my leg and a long recovery ahead of me.

A totally funny story.  I was sitting with the anesthesiologist just about to go back into surgery when they realized that they had not run a required pregnancy test prior to surgery.  Was there any chance I could be pregnant?  I assure them it was impossible unless there had been some sort of miraculous immaculate conception as Aunt Flo had just left and there had been no contact since her visit.  I had managed to embarrass both my husband and the anesthesiologist but it was not good enough so I had the joy of having to use a bed pan so a pregnancy test could be run as my word wasn’t good enough.  By then the adrenalin had long since worn off and the movement required to get a bed pan in place was far from pleasant with a broken leg. Guess you had to have been there cause it’s not nearly as funny in the retelling of it.

Thankfully surgery went well and I found myself recovering in the hospital room right next to my son’s.  I would be heading home the next day but it would be 5 weeks before my son would finally be home to stay.

For the record there are a couple hospital policies that seriously need to be changed!

What works for one… searching for the answer for my son

I think one of the most frustrating things about illness is that what works for one person doesn’t necessarily work for someone else.

We are all different and all respond differently to different things.

One person gets cancer, goes through treatment and is “cured”, another goes through the same treatment and gets worse and passes away.

I know someone who is absolutely miserable to be around when not on anti-depressants, when she is on them she is the most pleasant person you’ve met.  From yelling at kids on the street one week to praise and kindness the next.  Yet anti-depressants have made my son worse and don’t work for him.

I’ve read testimonial after testimonial and account after account of people who have “cured” themselves of mental illness. Those are countered with posts from people who tried the same thing but didn’t get the same results.

The internet has opened up a whole new world of knowledge.  20 years ago if someone was sick there way no access to information via the internet.  You went to the doctor and did what he said or looked in a book in the library if you were lucky enough to have something on the subject at your local library.

Now we are able to question everything and research things on our own.  Knowledge that was once unavailable is now readily available to all.

I got an email from a friend yesterday who said she’s found  a new medication that was helping her condition and she was doing well.  Last month she was barely even able to get online.

I know there are answers and solutions out there.  I know that there is something that will work for my son.  We’re consulting with someone new who thinks he can help us get our son back. We are trying something new.  The odds look good but studies have show it doesn’t work for everyone.  We’ve had 2 really good days this week. That’s better than we’ve done in a long time. We are hoping and praying that we finally on the right track.  If not we’ll keep looking for an answer that will work for him because it is out there somewhere.

Insurance and Medical Bills

I shouldn’t complain… we’ve been blessed.

We are self employed so we purchase our own health insurance through Humana.

We have high deductible insurance.

We have 2 deductibles, one for medical, one for mental health.

$10,000 each, $20,000 total.

 

medical concept -  stethoscope over the dollar bills

Last year we hit the limit on both deductibles.

Thankfully the bulk of that deductible was incurred at the local hospital.  They offer financial aid.  Based on the amount we owed them we qualified for assistance. They wrote off a portion of what we owed them so our total was significantly reduced.  They accept payments so every month we pay them $100 and will for a long time.  Compared to what could have been it’s a huge blessing.

The ambulance ride was a different story.  My son was transferred up to the University of Utah last summer. It was pre-authorized but our insurance originally refused to pay.  The bill was over $10,000.  I battled with them and sent in appeals.  Finally they paid about half of it but determined that they were not required to pay for a trip to Salt Lake when there was a facility closer in Las Vegas he could have gone to.   They would only pay the distance to have transported him to Vegas (the nearest facility that offered needed treatment).   I appealed again since it was pre-authorized and the claim was reviewed but they refused to pay any more.  So then I battled with the ambulance service.  I still owed them a lot of money and despite the fact that they had already been well paid they were not a contracted provided and weren’t required to discount their rate. Had my son had Medicaid at the time they would have agreed to accept just $1,200 for that same ride.  Ultimately they cut me a break and lowered my total owed to $1,500.  At that point I quit fighting and started paying.  A few months later they called to say they were going out of business so if I would pay half of the remaining total that day they would write off the remaining amount.  Total paid $900 for an ambulance ride from St. George to Salt Lake.  A lot better than the $5,000 I owed after insurance but still totally messed up in my book for an ambulance ride that was pre-authorized.

So far this year we have had 3 additional trips to the hospital. The first 2 trips were just to the emergency room (one via ambulance). In both instances he was released after a couple hours.  Total for those 2 trips was close to $5,000.  The 3rd visit was a 6 day stay.  I haven’t seen the bill.  I don’t want to.  I’m sure it will mean we’ve far exceeded our deductible for mental health.  Thankfully my son turned 18 and now qualifies for Medicaid.  I’m not a fan of government assistance. Not knowing what else to do when the medical bills started rolling in this year we applied for assistance for him and he qualified.  Medicaid will pick up what the insurance won’t.  It’ a huge relief and blessing for us.

Our medical system is messed up.  How can a ambulance trip to the local hospital cost $1,500.  And a transfer to another hospital cost over $10,000.  Who can afford to pay that kind of bill?

Natural Alternative Attempts

In March 2011 my son was started on his first medication.  I was bound and determined to get him off of it so I started researching.

Through the past 2.5 years I feel like I’ve exhausted nearly every alternative that we can afford.

Here are a few of the things we have tried with varying degrees of success and failures:

Diet

An obvious place to start.  The Standard American Diet… devoid of fresh fruit and vegetable and full of processed foods there aren’t many who will argue that it’s missing something.  We’ve studied and tried several different diets. I’ve learned to make yogurt and keifer, fermented vegetables, made soups and stews, gone dairy & gluten free, diced and chopped and pealed and blended and worn myself out to where I never want to step foot in the kitchen again.

Gluten Free

Casein Free

GAPS – Gut and Psychology Syndrome

Anti-Inflammation Diet

Body Ecology Diet

Allergy Elimination Diets

Eat to Live

Omni Diet

It was expensive and time consuming and ultimately we quit doing nearly everything we tried.  I’m not saying there isn’t an answer in one of these approaches, there very well may be one but we’ve not found it yet.

 

Vitamins, Minerals, Herbs, Supplements, Essential Oils

You name it we have likely tried it.  For the proof here are a few photos:

bucket of supplements

 One of several containers of vitamins I have.  They all don’t fit in my vitamin cupboard.

vitamin cupboard

 My vitamin/medicine cupboard in my kitchen.  Just a fraction of what I have purchased/tried.

I love essential oils.  We’ve tried a lot of them.

fireplace

My fireplace mantel.  The stuff we use often seems to always find its way here.  My house often looks more like a sick room than anything else.

 

I’ve read and read and read….

books

And research and researched and researched….

And tried multiple alternative solutions…

Orthomolecular Treatments

Chiroptractors

Cranial Sacral Massage

Homeopathy

Chelation for Heavy Metals

Energy Work

We’ve taken trips to see specialist in Salt Lake, Las Vegas and Arizona. We’ve consulted with specialists living everywhere from California to Texas to Illinois to the UK.  We’ve visited with therapists and social workers, counselors and psychologists.

Of course everything alternative is not covered by insurance so it comes out of our pocket.  Nothing is cheap. But how can you not keep searching and trying to find an answer.

We might be back to calling me naive or thinking that I’m looking at the world through those rose colored glasses I love to wear but I know there is an answer out there.  And I’ll keep looking for it because my son is worth it and deserves to live a productive, happy life.  I won’t give up on him.  I will keep fighting until we find it.

 

Modern Medicine Failures

First a confession… Honestly I’ve never been a believer in most medications. I’ve always been a believer in listening to your body.  If I have a headache I take a nap or drink a couple glasses of water.  Most of the time that does the trick for me. I don’t give Tylenol for fevers, I believe fevers are a good thing designed to fight infections naturally.  I believe the body is amazing and can heal itself if given what it needs.

I think many people are too quick to pop a pill instead of looking for a reason for why they are feeling how they are or a natural solution to their ailments.

However through the past few years I’ve learned that when you are desperate for solutions it makes you more willing to try anything that might help.  If your body isn’t giving you any answers and natural solutions are not helping medication is sometimes the only answer.

My brother is juvenile onset diabetic.  He takes insulin or he dies.

Sometimes medication is necessary, sometimes it’s worth trying, sometimes it works, sometimes it doesn’t…

From natural alternatives to modern medicine we’ve tried EVERYTHING.

Ok maybe not literally everything but it feels like it.

Here’s the list of medications I remember we’ve tried mainly cause I still have these in my cupboard or the experience with them was so horrific they’ll never be forgotten.  There are probably a few others but this is the quick list of what I recall.

Remeron

Seroquel

Zyprexa

Risperdal

Haldol

Xanax

Ativan

Trazodone

Lamictal

Depakote

Neurontin

Zoloft

Celexa

Prozac

Luvox

 

I know these medications work for some people but they haven’t worked well for my son.  Some of the experiences have been so horrible it scares me to try anything new.  Every prescription comes with that long list of warnings about possible side effects and it seems that more often than not my son has had the worst of the worst side effects.

Here are just a few examples….

 

Haldol

Look at this list of possible side effects.

In my son’s most recent hospital stay earlier this month he had one of those reactions.

His discharge papers state Medication adverse reaction to haldol with EPS effects – resolved

Here is what his adverse reaction consisted of.  I called one morning to check on him and was told he’d had a great night and was still asleep.  When I stopped by to visit a couple hours later all was not well.  He’d woken and was sitting in the chair in his room and suddenly could not move or speak or do anything.  All the muscles in his body seized up and went rigid.  The nurse who was with him in his room had to hold him in place in the chair so he didn’t fall onto the floor while they called for help.  He told me it was the scariest thing ever and he thought he was going to die.  Cross haldol off the list of possible medications.

 

Risperdal

Last summer my son was admitted to the behavioral med unit.  Long story which I may someday share in detail but the short version is I was also in the hospital and unable to care for him so had no other viable choice.  The doctor convinced me she knew just what to do for him and would have him well shortly.  4 weeks later after 2.5 hellish weeks here in St. George (which included having him put on 8 different medications at the same time – see the cartoon below) followed by a transfer to the University of Utah (where they took him off the crazy amount of medication he had been put on) it was determined that Risperdal was causing Akathisia.  It was discontinued and almost overnight he was back to “normal”.

 

medicine

Xyprexa

He left the University of Utah on Xyprexa.  I was told he had to remain on that drug likely for life and I should not take him off of it.  It kinda worked, he was stable enough to come home but never well while taking it.  After 8 months on it adverse reactions started to occur.  He would be just fine during the day but within a half hour of giving him the medication he would be pacing the halls and completely unsettled.  The doctor I took him to said –  no the drug doesn’t do what I was describing, instead of taking him off of it let’s split the dose and give him some in the morning and some at night.  So now he was crawling the walls and miserable all day. Thankfully shortly after he developed Tardive Dyskensia (an uncontrolled muscle movement which can be permanent) which meant the doctor was finally willing to stop the medication and try something else. Although it’s kinda sad that I consider developing a possibly life long side effect to be a blessing…

 

SSRIs

Dr. Oz recently did a show titled The Truth About Antidepressants.  Kinda scary!

The 3 most horrible memories I have all involve the use of SSRIs.

#1 Zoloft

I thought I knew what psychosis was.  I mean really we’d had some ups and downs and things that I had termed to be “psychotic”. Reality check – I had no clue what psychotic was until my son took this drug in the fall of 2011.  He called me one day from school.  He said he had to tell me something important. I hopped in the car and found him running home. He got in the car and told me he had to cut off his nose. We narrowly averted a disaster, to this day we have very few knives in our kitchen.  As I looked into possible side effects of SSRIs I read similar scary accounts of what had happened to people who took them.  Strike One.

#2 Celexa

While in the Behavioral Med unit in the summer of 2012 my son was started on another SSRI – Celexa.  I was not happy when I learned this and tried to tell the doctor SSRIs hadn’t worked in the past but ultimately I had no say in the matter. I’m not a doctor, I don’t know anything… The last day he took Celexa was the day he ended up on an ambulance on the way back to the hospital.  Strike Two.

Since Celexa hadn’t worked the same doctor decided to try Prozac but didn’t tell us about it. Thankfully the next day he was finally transferred up to the University of Utah where he was immediately taken off the Prozac when I explained his past history with SSRIs, disaster averted.

#3 Luvox

Despite our previous bad experiences with SSRIs we were convinced to try one more time earlier this month.  This time it would be Luvox which is specifically aimed at treating obsessional thoughts.  Success stories were shared of a couple patients who were very similar to our son and we were told this one had a real chance of helping.  As we were at a loss and had no better option we decided to go ahead and try it.  The results… another 911 call with search and rescue involved this time.  A miracle or two along the way and all is well that ends well but I’m officially done with SSRIs. Strike Three!

 

Oh and one more that deserves honorable mention.

Lamictal 

It comes with a warning label that it may cause suicidal thoughts for a good reason.  Enough said.

 

So there you have a brief account of why I have become so disillusioned with modern medicine.  My son is still on medication.  I wish he weren’t because it is not a solution that is working for him.  I know it helps some people, I know it is necessary for some people but my son has been labeled Medication Resistant which I’m beginning to think needs to be relabeled as Medication Adverse, more likely to do harm than good.