Good-bye 2015, Hello 2016

This past year has been one of the most difficult years I have ever had. It was an incredible roller coaster ride that, without my family, friends, and faith in God, I'm not sure that our family would have made it through. Here's my list of the best and worst for my family in 2015 and a few things I'm looking forward to in 2016.

The Worst of 2015

(I'm not sure that I can put these in a particular order. Some were worse than others, but I can't sort them all out right now.)

💥 Our daughter (PG) having large spells and tics that would last minutes to hours. She was eventually diagnosed with both Tourrette Syndrome and epilepsy. We're still waiting for her to be six months seizure free so she can be off restriction.

 💥 Our son (SuperBoy) needing multiple MRIs because (as we discovered) sedation doesn't work for him and the doctors needed more images than they originally realized. 

💥 SuperBoy was diagnosed with a Chiari malformation and needed more tests to confirm how significant it was.

💥 In June, it was determined that, due to the restriction of cerebral-spinal fluid and pressure on the brain stem, our son would need brain surgery to make more space for the brain and allow the fluid to flow the way it should. This was heart breaking news.

💥 PG was not able to play with her friends at the park, climb trees, go across the monkey bars, or do anything where she could fall. She would often cry because she couldn't be with her friends and do what they did at the park. (This broke my heart every time and caused some differences in opinions on parenting.)

💥 Many, many, many doctors' appointments, tests, and phone calls to specialists at Children's Mercy Hospital.

💥 Being diagnosed with Ehlers-Danlos Syndrome and learning all the complications that can go with it. Also learning that each of our four children has a 50% chance of having it too.

💥 Some friends whose daughter had been fighting cancer for nearly her entire 15 years, won her battle by God calling her home. 

💥 My kind, incredible, and extremely intelligent brother-in-law was fighting cancer. He was doing better when he took a sudden turn and was taken Home to be with His Savior and his dad who passed earlier in the year.

Some of these were heartbreaking and others exhausting both mentally and physically.  The good didn't outweigh the bad, but it's always good to count your blessings and remember the good with the bad.

The Best of 2015

(Again, these are in no particular order.)

💥 Finding the medications and dosages to help PG with her severe tics and seizures.

💥 SuperBoy going on a church trip and two camps before having his surgery.

💥Everyone who bought bracelets and helped sell bracelets to pay for SuperBoy's camps.

💥 SuperBoy's surgery was successful. He only had to stay in the PICU one night and less than a week in the hospital. 

💥 Amazing friends and family who were at the hospital during SuperBoy's surgery or helped by watching our other children so both DH and I could be at the hospital. Also those who brought us meals so we didn't have to worry about fixing supper when SuperBoy was at home recovering.

💥 Incredible doctors and staff at Children's Mercy Hospitals and Clinics.

💥 The Easter and Christmas programs that I directed for our church as well as the children's choir singing beautifully.

 

💥 Birthdays and holidays spent with loved ones. 

💥 My niece graduating from high school, joining the Army National Guard and graduating from basic training and AIT training with flying colors!

💥 Finally receiving a diagnosis after being chronically ill for 5+ years. 

💥KC Royals winning the World Series!

With a year like we had in 2015, 2016 must be better, right? Well I'm choosing to look for the positive and search out God's will and blessings for my family. No matter how 2016 turns out, I know for sure that God will walk with us each step of the way. Here are a few things I'm looking forward to in 2016.

💥 Fundraising to pay for medical bills, equipment, and hopefully a more accessible home.

💥 Getting appointments with geneticists and specialists to get more health issues figured out.

💥 Date nights with my DH. 

 

💥 Family staycation or trip.

💥 More birthdays and family celebrations.

💥 Watching our children learn and grown as we homeschool. 

This year I'm working on putting the past behind me and looking forward to the future, whatever it may hold. 

http://youtu.be/52nriweHAXs

Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome (EDS) is why my body hates me. For years my body has given me fits of different kinds, but it all came to a head six years ago. For six years I have been chronically ill and no one could figure out why. They ruled out all kinds of disorders (MS, Lupus, epilepsy, and more), and then the doctors would send me on my way. My PCP fought for me, but didn't know who else to have me see. By the grace of God, a friend of mine mentioned a doctor who was able to help her when she was bedridden. We decided to give this new doctor a try. This doctor practices family medicine but also functional medicine. That was my first exposure to functional medicine, and although the diet didn't heal me as it has others, it has helped me identify foods that body doesn't handle well.

Early in 2015 our oldest was diagnosed with a Chiari malformation that was restricting the cerebral spinal fluid from getting to his brain and was pressing on his brain stem. Scary stuff! He had brain surgery in July and is doing much better. It was through my desire to learn more about his condition and receive support from other parents that I first learned about EDS. 

In September, a fellow mom in the Facebook support group posted a LOT of links about EDS. That day I decided that I should finally read about this disorder. I was shocked and amazed! I had numerous symptoms, so many that after sharing the links with my hubby we decided to share the information with my doctor. (The one who is a family doctor who studies functional medicine.) Because she believes in continuing to learn and putting her patients first, we were sure she would read the material. We were right! She told us at my visit that she was amazed at how many of the symptoms I have. She did the proper exams (the Brighton scale and the stretchy skin test) and gave me the clinical diagnosis of Hypermobile EDS. 

WHAT DOES THAT MEAN????

EDS is a connective tissue disorder that effects the collagen in the body. Collagen is found in every part of our bodies except the nerves. It is the glue that holds everything together. There are different types of EDS and depending on which kind you have depends on which part/s of your body are more severely effected. (I plan to address the other types in a future post.) For the hypermobile type, the joints are very flexible causing the joints to subluxate and dislocate on a daily basis (for many people, multiple times a day). It also causes pain in the joints as well as the muscles that are having to help hold our joints in place. We can use physical therapy to strengthen our muscles, but if the wrong kinds of exercises are done, or in the wrong order, it can cause injury (we injure more easily too) and cause even more problems. So finding a PT who knows about connective tissue disorders and hypermobility is a must. It's also important to find a PT who understands chronic fatigue (which we often have since our joints and muscles tire easily from having to work so hard just to walk, write, type, cook,  do all kinds of typical activities). If we work our bodies too hard it can land us in bed for days or cause joint injury. 

There are many health issues that are associated with EDS, but more research needs to be done to prove that EDS is a cause. It makes sense though because connective tissue is found throughout the body, every body system can be affected. People with Hypermobile EDS may also have Postural Orthostatic Tachycardia Syndrome (POTS), mitro valve issues with the heart, gastroparesis (slow gastric emptying) IBS, very sensitive skin and stretchy skin that is difficult to suture, mast cell activation disease, vision issues, dysautonomia (which causes all kinds of other issues) Chiari malformation, cervical instability and more. It can be very difficult to be diagnosed with these associated issues because education about EDS typically begins and ends with a short paragraph in a Med school textbook. Because it is deemed a "rare disorder", most doctors don't even think of it as a possibility and there are very few specialists who know much about it as well. Insurance companies can be difficult to work with too in getting the proper tests completed. So, many people with EDS (EDSers) have to travel to be seen by doctors who actually know about the condition and understand the MANY, MANY underlying factors that go into treating someone with Ehlers-Danlos. 

It makes daily life a chore sometimes. Something as simple as getting out of bed, eating a meal, taking a shower, or going to sleep can be significantly difficult. My energy level and pain levels change throughout the day. I may seem fine and I'm able to go up and down the stairs and cook and clean perfectly well in the morning, but in the afternoon I can barely move, or my body makes me sick to my stomach or so tired that I have no choice but to lie down. Lying down is a pain too, literally. If I sleep in the wrong position or my bed or pillow don't give me the proper support, or if my joints are just hurting, lying down can cause a tremendous amount of pain; making it nearly impossible to rest or sleep. 

Why am I telling you all this? Well, it's not for attention or sympathy. It's for education. EDS is thought of as a rare disease, but the hypermobile type is likely not rare but more likely underdiagnosed. The more people that find out they have this disorder and get diagnosed, the better chance for more research we have. Not everyone ends up disabled or feeling ill all the time. There are different severities, and it hits people at different ages. The treatments that are available, aren't that great. The medications they offer are very strong and for some people cause side effects that are just as bad as the pain they have. And the government is trying to limit our ability to even get those medications anymore. Physical therapy and occupational therapy are great avenues to explore, but they don't work for everyone. And like I stated earlier, you have to have the right kind of physical therapy or else you could get hurt. This is a genetic disorder. Without question each of my children could have it. I want to give my children the opportunity to have a better and brighter future. Getting them diagnosed early on is one good thing that I can give them, but it would be even better if I could give them better treatments and possibly even a cure! 

For more information about EDS go to http://ednf.org/node/11

When my neck is hurting a lot or too weak to hold my head up, I wear a neck brace to relieve my muscles and joints for a bit. I'm not a fan, so I try to keep up with the little things that help me feel "normal" even when I'm not feeling "normal" at all. 

Dysfunction Junction (a book review)

Last week I finished a terrific book, Dysfunction Junction by April Erwin. This is April's second book and is a fun and engaging novel that reminds young women that true beauty is found within and not to give up on God's plans. 

Here is a short synopsis of Dysfunction Junction.

“I’m twenty-six and I’ve never been kissed.” Staring into the bathroom mirror while making this brilliant comment is supposed to make it feel real. It doesn’t.

Finding true love these days feels impossible to Kianna Ravencamp, only dysfunction surrounds her. Her sister’s married to an abusive husband and marriages she’s admired for years are falling apart. Maybe relationships like her parent’s don’t exist anymore. She dreams of true love and a family, but she’s never even been kissed.

For her birthday, her best friend gives her a journal and dares her to follow her dream of songwriting and vocal lessons quickly follow. Kianna’s finally dared to dream big… if the three men in her life don’t get in her way.

Nick Steele, her new vocal partner is flirtatious and charming. Derek Simpson, the new vocal coach is asking her out for coffee. Even Jason Payne, a childhood friend is acting odd. For the first time in her life, she will have to navigate dating and flirtation. Will her inexperience be her downfall? How will these relationships affect her songwriting career? 

Letting go and trusting God is the only answer that brings the path to real love and success.

I am doing my best to give a detailed review without divulging too much information, but there may be a few spoilers.

Genre: Christian Chick-lit

I would agree completely that Dysfunction Junction is Christian Chick-lit. It is great for young women wondering just what God's plans are, especially when it seems her own plans are falling apart. Young men may enjoy reading this book, but it's intended audience is definitely female.

Age range: 21 years and older

Due to some more mature content.

God/Christianity: Throughout

Our main characters are regularly praying and talking about God and His will in their lives. Scriptures are mentioned as well. They also attend church regularly.

Drug and/or alcohol content: Some

Even though the heroine does not consume alcoholic beverages, she does put herself in situations where alcohol is served and she is interacting with people who are or have been drinking. This is spoken about in the book and clearly shown that our heroine and her friends and roommate do not drink alcohol and do not approve of alcohol consumption.

Cigarettes are also smoked at a few places that Kianna visits.

Cursing/Off-color Language: Very little

There is mention of a four letter word being said, but the word is not actually written in the book.

There is a joke at the beginning of the book where men are compared to parking spaces. Some may find the comparison offensive.

Violence: Moderate

As mentioned in the synopsis, our heroine's sister is in an abusive marriage. Dysfunction Junction explores this and we are able to see some of the abuse as it happens to both Kianna's sister and niece. (This part of the story line is intense and may be difficult for some readers.)

Sexual Content: Mild

Kianna and her friends talk about dating, kissing, and not putting themselves in a position that could compromise their beliefs or reputation. It is not explicitly stated, but implied that our main characters believe in waiting to be married before engaging in sexual intimacy. Despite her beliefs, Kianna does find herself compromising her standards and allowing herself to be in a questionable situation in her apartment all in the name of letting her walls down and allowing herself to fall in love.

There is a humorous story shared at a girls' night that mentions undergarments and an inconvenient position in which one of Kianna's friends finds herself.

Kianna's friends take her shopping, and she has bra fitting where she must take off her blouse and bra. 

There is also a humorous situation involving Kianna becoming stuck while getting dressed.

The descriptions of sexy and hot are used.

Marriage and Divorce: Throughout

One of the main topics of this book is marriage and how so many people are finding themselves in unhappy marriages or getting divorced. Kianna is overwhelmed by it all and begins to question if happy marriages can truly exist outside of her parents'. 

Although working through differences and attending marriage counseling is spoken about, the author also shares beliefs that abuse is an acceptable reason to seek a divorce. 

I very much enjoyed this book. It was difficult to put it down. I connected deeply to the characters and wanted Kianna to see herself the way others do. I highly recommend this book, especially to young women just out of college.

reading for fun

I love reading, but being a homeschooling mother of four, I hardly find the time to read for pleasure. I find time to read to my kids and read books/magazines about homeschooling, but not a lot of time to read for pleasure. Since reading is very important for children and adults, I'm working on finding the time to read just for fun. Reading aloud and modeling reading help children see that reading can be a fun way to learn and spend leisure time. Once kids think reading can be fun, they'll read more often and quickly find that reading allows them travel to far away places (including fantastical places), travel to the the future and back in time, meet new people (both real and fictitious), and so much more. Unfortunately,  I find myself easily engaged in other things rather than reading, so when I was given the chance to read and had a purpose to do it; I was thrilled! (Sometimes I need a little "kick in the pants" to do what I know I should.)

A few weeks ago my friend April Erwin gave me that kick in the pants. She asked for people who would be interested in reading her two newest books and giving an honest review of each book. It seemed like a great idea since we're doing very little school work right now, and I have missed reading books. (It also gives me a chance to get back to blogging.) I'm excited to be reading more of April's books and to give my children a good example of reading for fun!

So be on the lookout this summer for book reviews for young and older. I'm thrilled to spend more time reading for fun and reading to my children. I hope you enjoy my reading for fun series this summer! Be sure to do some reading yourself, and share your thoughts on the books you read.

About disappointment

Disappointment is a good word to describe my trial with the elimination diet. I know others have had great success with the diet and felt their bodies "reboot" and become like new. Well, that's not the result I had. I do feel better, I have more energy and can walk better. I rarely have to use my braces and it has been months since I needed the wheelchair. Matter of fact, I rarely use a motorized cart when grocery shopping (although that is due to my children's needs and not just mine). Even though these are WONDERFUL benefits, I'm still not able to do the things I really want to do.

I still want to be able to take my kids to the park and play with them. I'd love to be able to run with them and work in the garden even though it's hot outside. I want to go on nature hikes, roller skate, ride bikes, etcetera. It's difficult for me to not feel disappointed at another failure in both finding a diagnosis and getting my body to where it should be for a 36 year old mom. I'm working on being happy and feeling blessed with the results I did receive, but it is definitely a struggle for me. I feel like I'm letting my kids down and my husband down. 

For this reason (and some other trials our family currently has) our Scripture to learn this summer gives hope and promise for renewal.

Isaiah 40:31

“But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.”

-Inspired Version

How many more weeks?!?!

My doctor called yesterday!!!! She told me that she went to a conference this past weekend where they recommended people with numerous symptoms (like me) stay on the elimination part of the diet for eight weeks. (Sigh) Eight weeks!?!? I know the idea is for me to get better, but this diet has been a bear. Even when you start to add things back into your diet, you only do it one food at a time for three days. Depending on how my body reacts to the "new" food I can make it a part of my regular diet or take it out completely. Since I have already completed five weeks of the elimination part, I only have three more weeks to go.  When I think of it that way, three weeks doesn't seem that bad.

Because my doctor thinks I have a gluten intolerance, I won't try to add that back into my diet for at least six months. Hopefully, after six months of being gluten free, my weakness, numbness, and fatigue will be gone. If it comes back when I eat gluten, we'll know that gluten was the culprit of my symptoms. If not, I can try to eat wheat and gluten again.

To make things a bit more interesting, I found out yesterday as I was making lunch that our glass stove top is chipped and cracked.  

Due the chips and cracking, we shouldn't use the stove top because we could get shocked or it could cause a short. :-/ So now we can only cook with the oven and microwave. We do have a plug in grill I can try, but for liquids (like soup) that's not going to work so well. So now I'm on the hunt for a replacement glass stove top. If you know where we might be able to purchase one without breaking the bank, I'd appreciate your tips.

Also, if you have any tips for "clean" food using a grill, oven, and/or microwave; I'll take those ideas too.

I don't usually share a Scripture on my blog posts (a habit I should probably begin), but today; I woke up very fatigued and weak. This Scripture showed up on my Facebook feed, and I felt I should claim this promise today. It's a good promise for all of us.

Isaiah 40:31 "But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; they shall walk and not faint."

 

Why aren't you better?

I'm ending week five, and I've decided that food is my sworn enemy.  Even on this diet, food is my enemy. My body hates me and food is my enemy. Eating food that is supposed to be "safe", my stomach hurts, my body is weak, and I don't have a lot of energy. I am so frustrated that I don't have a doctor to talk about with all this. My kids and and DH get the brunt of my frustration, which obviously isn't good.  

This diet is extremely stressful on my family.  They are ready for it to be over and there have been times where they just wanted me to quit and have told me so. I had to be on this diet over Valentine Day and our wedding anniversary which meant we couldn't really go out to eat (except for Chipotle, which wasn't edible on that date because it was too spicy) and DH feels guilty eating in front of me.  It's hurting my relationship with him and the rest of my family.

I can't say that I'm getting better.  I feel like I may have more energy than I usually do, but almost all of that energy has to go into making my food, so it's difficult to know if I truly do have more energy. DH isn't seeing any improvement. This was supposed to be the answer when none of the other medical professionals could figure it out. This was supposed to "fix" me. No luck. I'm just as sick & broken as I was before. 

I thought I'd be able to play with my kids again. Take them to the park and the library.  Walk barefoot with DH, and be able to go places without a wheelchair or walker.  Be able to exercise on a regular basis, and go out to eat on occasion without having to pick the entire meal apart just to eat something not worthy of the price paid for it. I'm so angry I could just scream!

So where do I go form here?