Please Be Kind

We are a family in physical pain. Adam has Metabolic Myopathy. It's non treatable, and he is in constant pain. He tries to put on a brave face to the world, but his pain is constant and sometimes unbearable.

Tyler has daily migraines that leave him unable to function in the world. We have tried almost every possible treatment, and are now working on herbal treatments.

I have blogged about my own emotional problems in the past. You can read about them in my older posts.

Needless to say, we have our hands full. Understanding why we can't get to church, or other functions would be appreciated.

Things not to say to people that are in our situation:

1. Get out. You'll feel better.
2. Just shake it off.
3. It's good to see you. You must be feeling better.
4. Have you gone to the doctor?
5. You need to be out with friends.
These are just some of the things that shouldn't be said to people in our situation. We do the best we can. 

We know that this has been going on for a while, and to the outside world it may seem impossible to believe. However, we are dealing with the situation the best we can. We know that we are being tried and tested for a reason, and we will and are being blessed for what we are going through.

Sassy Pants!

I have had my sassy pants on for a few days. I have some more sass that I want to get off of my chest.

First Thing! I can't stand it when someone (who shall remain nameless) publishes a couple of books (2 in fact), and then thinks he's too good to speak to aspiring authors. Your mother was a hamster, and your father smelt of elderberries!
This is what I picture the attitude as:

"If I run into you, If I run into you
Yeah here's what I'd do
I'd say, "Listen I'm having a really crazy week
and I can't talk right now,"

Second Thing! It drives me nuts that people put others down that write, paint, dance, etc. These are real jobs, and we work so hard to put our creativity to work. So, just because we may be at home, at a dance studio, or an art studio does not mean that we are not working.

Third Thing! Don't judge myself or my family. I know to some, it may seem like we aren't active in church, that we have fallen away, but I assure you that is not the case. We've been very ill. Yes, all three of us, and it's been hard. My Visiting Teachers Have Never Been Here! That sucks, but we have Family Home Evening every single week, we have daily private and family prayer, my son and husband are faithful priesthood holders, we have family and personal scripture study. Sorry to disappoint anyone who has had their tongue wagging about us!

Fourth Thing! It drives me crazy when people have the nerve to act like my husband and I are bad parents because our son has health issues. We all have health issues, and just because he didn't make Eagle Scout doesn't mean he is destined to a life of inactivity. He has incredible faith, and a strong testimony.

The Real Me

Well, I know there has been special interest in our family. There has also been well meaning yet bad advice given to me.
My dad is dying, and it breaks my heart. I know where he is going, and that I will be with him again. That being said, the pain of losing him is real. If you want to help, send an encouraging message, pray for him and my mom.
My son is still suffering from ongoing, constant, daily migraines. He has sleepless nights, and days when he has to wear sunglasses in a dark house. He sees specialist after specialist, and needs to try different medical changes constantly.
My husband has an inflammatory illness that leaves him weakened and in constant pain. We are still waiting for specialists to nail down what is wrong with him exactly. People know that he is ill, and yet they still don't understand.
I have illnesses as well. Mine are psychological, but every bit as real. Due to issues that I have had to deal with, it has caused me to emotionally shut down. I have been dealing with anxiety, OCD, severe depression, and agoraphobia. I can't snap out of it, just cheer up, serve others, and feel all warm and fuzzy inside. It doesn't work that way!!! Before you give me advice on "natural" remedies, tell me that there is something wrong with the way I live my life, or that I don't have a close relationship with Heavenly Father, because I DO! Educate yourselves. I am currently in treatment, that's what you all need to know.
Things may be difficult now, but we all have strong testimonies, have daily scripture study, Family Home Evening, and family prayers. We are a strong, united family.
I also have a sweet son that is in college, has a steady job, is an RM and is a joy. He helps in more ways than he could even imagine.

Three Wishes

Every author needs one of these!

I posted on my FB wall a simple question: If you had three wishes what would they be? I had a lot of great replies. Now my three wishes:

1. I wish that my family had good health (I'll go ahead and stick myself in there too) I wish Tyler's migraines would be cured, and that he would never have to suffer through another one. I would wish that Adam's migraines would disappear, his epilepsy would never bother him again, his arthritis would go away, and that his breathing problems would never plague him again.

2. I wish that I could meet my favorite authors: Elizabeth Scott, Alyson Noel, Elizabeth Chandler, Scott Westerfeld, Todd Strasser, Jay Asher, Michael Grant, Jessica Verday, L.M. Momtgomery(admittedly difficult on the last one)

3. My final wish would be to be a published author. That would be a dream come true.

The Guilt Ends Now

I think I have finally let myself see things the way they really are. I think we all sit on our high horses, having expectations that we don't meet ourselves. I am so tired of being pulled in different directions. I have put my family first, and that is what needs to be.

I used to be so afraid of letting people down all of the time. Why the crap should I care what other people think of me. My family needs me, and they are the ones that have to come before all others.

My family is going through some very trying times, and I have to be here for them. I know people don't get it, but, oh well. Heavenly Father says Family First, so Family First it is.

For those of you that don't get it. I hope you never have to see your loved ones suffering. I hope you never have to see your child miss out on so much because he is so sick. I hope you never have to see your child miss out on daily life, and have his life consist of tests, specialists, medications, and seeing his friends do what he wishes he could do. I hope you never have to see your spouse suffer through multiple surgeries, and be in constant pain.

I'm sorry if my family's trials are inconveniencing you.

Tyler

It's two o'clock in the afternoon, I just finished my breakfast, and I am still in my pajamas. Yup, it was a rough night. - Thankfully, Tyler's neurologist is a very good friend to our family, and we are able to call him on his cell or at home. Well, Friday everything sort of came crashing down around us. He had been putting in weeks of horrid daily migraines and vomiting. I called our fave doc in the world on his cell, and he had us take Tyler to the ER for blood work and dehydration. He was concerned because Tyler had taken 8 mg of Zofran and was still vomiting. This is a drug that they would give to chemo patients to control their nausea. He had lost over 20 pounds in a little over a month. Freaking SCARY! - We brought Tyler in and it took two nurses about half an hour to be able to get his IV in. OUCH! They administered Compazine for the nausea and migraine pain, but within minutes, Tyler was having a nasty reaction. He was combative, angry and restless. I went to the nurses' station and told them what was happening, and the doctor and a nurse came in right away. They gave him Benadryl through his IV and explained that he was having Dystonia because of the Compazine. Apparently it happens in one out of twenty patients. It was scary as heck. Thankfully the Benadryl helped, and he was able to calm down. - After that wonderfully jarring experience, they gave him a pain med that could knock over a horse. He actually had two days with hardly any pain, and no nausea! Then in the middle of the night his migraine spiked, and he is in pain today. He is resting now, and my heart is so sad for him. He had two days of feeling well, just to be blindsided by horrible pain again. - In all of this I have learned a few lessons. - 1. Cherish the good times. - 2. No one can understand what you are going through unless they have had a sick child as well. - 3. Times like these can strengthen your faith, or make you bitter. I am choosing to strengthen my faith. - There have been a couple shining examples for me. Tyler's faith hasn't been shaken. He has a strong testimony and belief in our Heavenly Father. We prayed and prayed that the nurses would be able to get his IV in, and they were able to. That was a huge blessing. Tyler's friend Trevor has been pulling for him, and none of us will ever forget that. Our new Home Teacher, Matt, has shown so much love and concern for Tyler as well. That touched my heart. - When you go through things like this, it is the little things that matter most. Someone dropping a dinner by or a phone call. If we say no, now is not a good time to come by, please don't get offended, Tyler has to be our first priority now, and we may have put in a rough day, night, or both. We may still be in our jammies and eating breakfast at two in the afternoon. This is hard for all of us, and we are just trying to hold on, hang in, and get through this.

Goings On

Tyler's two favorite gifts! Dad lighting the candles!!!!!

Our little Emily is never far from us!!!!

My sweet Hubby! I adore this sweet man!!

Tyler could eat on his birthday!!! We were blessed to have him feel well enough to

enjoy his day!!!!!!

Many things are on my mind today. That may or may not be a good thing; time will tell.

I think a lot about what has been happening with our family. I also think about what is going to happen. Ad has his first appointment with his surgeon this coming week. Yikes!

Tyler has been putting in some terrible days and nights. His migraines have been terrible. He is getting some rest today. Poor kiddo really needs it.

He spent his birthday with a migraine, but he didn't throw up so it was a good day. In his birthday pics, he's on the couch, under his quilt that I made him. He was able to have a birthday dinner and cake. So, thankfully, that was a happy day.

I've also been thinking about writing. I haven't been able to do as much of it as I want, but there is a time and season for everything. Now, I am ready to get back to it. I know that it's a part of me. I don't think I could be me without writing of some kind. I need to write like I need to breathe. I have been suffocating for a while now.

I have also been thinking about something that a lot of people know about, but a lot more don't. I have been struggling with anxiety, depression, and OCD for most of my life. I suffered with an eating disorder in high school, trichotillomania, and other anxiety "tics" in school. In my adult life my demons have taken the version of crippling OCD. I have a horrid fear of germs, social phobia, and many others. I also suffer from panic attacks. Yes, I am on meds. Are they completely effective? Not at all. There is always the struggle to find the right meds, or combination of meds.

You want to hear something really strange? I think all of this has made me a better person. I have empathy, sympathy, and understanding that I would have gained only by going through this my whole life. I am the kind of mom that I always wanted to have. I am the kind of advocate for my child that I should have had as a child.

We are all given tests. We just need to get through them, and come out better on the other side.

Pajamas

I know, weird title, huh? Well as I write to all of you at four in the afternoon I am still in my pajamas, and I just downed some blueberry Pop Tarts. Yes, I am depressed, and I am going to tell the whole blogging world just why I am.

First, our son has been suffering from debilitating migraines. He gets so sick from them. We are seeing specialists, and we have another appointment at the end of the month with his neurologist. His schooling is suffering, and that has me so worried. I feel so badly for him because he can't live the life of a normal, care free, teen. We are doing all we can, but he is still not well.

Second is my sweet hubby. He has epilepsy, migraines, and his last MRI showed that he is growing new and unexplained lesions in the white matter of his brain. Hopefully we'll find out what is happening to him at the end of the month. From what we have been able to find out, it could be migraine related lesions, which they don't know much about yet, or something like MS.

Then there is my dad that has just been diagnosed with either lung cancer or lymphoma. He goes to find out exactly what it is soon. I'm not ready to lose my dad. I am the baby of the family and the only girl. Needless to say I am close to my dad, and I can't imagine life without him.

Then last night we got a phone call from Adam's doctor. He had reconstructive surgery on his chest in 2005. The wires they put in his rib cage have fractured. He needs to have another surgery to remove them.

Things are stacking up. I can get things out better in writing, so this is a cathartic thing for me. Thanks for "listening".

Oy!

I think I need to rename this blog to "Rabbit Food, Venting, and Other Random Things". Adam and I are trying to get ourselves into some shape other than round. So far, so good.

Right now I am reading Art Geeks and Prom Queens by Alyson Noel. This book is amazing. I love it! I just finished Lies in the Gone series by Michael Grant. Holy! What an awesome book! I am on pins and needles for the next one to be released.

I love YA books. I am not really into "grown-up" books at all. There are a couple of exceptions to that rule, but overall YA fiction is my absolute favorite. It's the same with my music choices. Give me Paramore, Three Days Grace, Metallica, and Evanescence and I am one happy lady.

Today has been a trying day for me. My doctor has increased my migraine meds, so my brain is really not happy with me. Picture a crying space cadet...yeah...so not good! Tyler is still down with the stomach flu, and Adam has been my support and has been helping me so much. I love my man!

Family Tradition

I see sick people! Tyler has a stomach bug, my doctor raised my dose of meds for my migraine symptoms, and Adam has been having his migraine issues.

Anyhoo, yesterday was a good day. I helped my parents, went grocery shopping, and I was able to spend time with my hubby and son. We have a tradition where I read to them. We have created so many great memories doing this.

We started this tradition with the last Harry Potter book, and carried it through the Twilight series, Midnighter series, Gone, Hunger, and now the Uglies series. We have so many more to go through. We all love it.

I have to say that probably my favorite author right now is Scott Westerfeld. This man's imagination and writing style just blows my mind! I also love Jay Asher's book, 13 Reasons Why. I think it's a must read for parents.

Venting and Crud

Okay folks, I'm in venting mode. Unfortunately, I did not come equipped with a shut up button, so "Fasten your seat belts. It's going to be a bumpy night."

I love my life. I love being a wife, lover, my husband's soft place to fall, mother, author, friend, daughter, and all of the other things that I am. I love all of it! I really do.

Now here is where things get a little tricky. This is what I don't like. I don't like one way friendships. If all you want from me is to suck the life out of me, please leave me alone. I understand that at different times friendships need more of a give and take in them. I get it. I am talking about the ones where I do all the giving and they do all the taking.

I am also not fond of people questioning my parenting skills; especially by people that have no children! I am a good mother. Our son has some ongoing health issues. Which would be why he has seen a neurologist since he was 12. These issues are a major reason why we home school. In a perfect world our son would not get sun sickness, migraines, (it has actually been a few days since he has had one!) and other health concerns. Then he would be able to go to Scout Camp and High Adventure! We do not keep him from these things because we want to be mean. He has health issues! Get that through your brain!!!!

I am so sorry that my health issues keep me from being at your beck and call. I am sorry that I can't be at every function that is thrown. Again-there are reasons why! I am not stuck up, I am not rude (except maybe right now) nor am I heartless. I have feelings too. When you treat me like I am invisible, yes, it does hurt. When I am overlooked and treated like I don't belong (WOW! BIG SHOCKER COMING UP!) it does hurt. So, please remember that I have feelings too and a heart that can hurt.

My last rant-My husband is an incredible hubby and dad! He loves and cares for us. He does everything he can to make our lives happy. He is my heart, and if you mess with him, be fully prepared to take me on as well!