Purple Falls!

September is Chiari Malformation Awareness month! Purple is the color that symbolizes Chiari Awareness and, for this reason, it has become my new favorite color. Actually, I've always loved purple but more so now because it means something special to me. Bringing awareness to Chiari Malformation is a cause that I have definitely become passionate about.

3 days ago, on September 7, Niagara Falls was illuminated purple in honor of Chiari Awareness. How cool is that! I found this beautiful picture of it.

Source

30 Things About My Invisible Illness You May Not Know - Link Up

I am getting back into blogging after a summer break. I took a break mostly because with having all three of my kiddos home and distracting me, I could barely form a thought let alone a blog post. :)

This week (September 8-14) is Invisible Illness Awareness Week and in honor of that I am sharing 30 things you may not know about my invisible illness.

1. The illness I live with is: Chiari Malformation, Dysautonomia, Fibromyalgia.

2. I was diagnosed with it in the year: Chiari - October 2012; Dysautonomia & Fibromyalgia - September 2013

3. But I had symptoms since: I became symptomatic with the Chiari Malformation after I was in a car accident in August 2012 where I sustained a neck sprain (whiplash) injury. I began having symptoms that I later learned were from Chiari about 2 weeks after my accident.  The symptoms increased in number as well as frequency and severity throughout the next several months until I had Chiari Decompression brain surgery in January 2013. I developed symptoms of Dysautonomia before my surgery but they unfortunately worsened after surgery and I also began to notice symptoms possibly related to Fibromyalgia appear 4 months after my surgery. There are many symptoms of Chiari, Dysautonomia and Fibro that overlap each other, so I'm often unsure of which condition is causing my symptoms. I was told by my doctor that the Dysautonomia and Fibromyalgia likely resulted from nerve damage and damage to the autonomic nervous system due to the Chiari and surgery.

4. The biggest adjustment I've had to make: I was unable to continue working part time as a nurse following my surgery. That put a significant strain on our household income and my husband had to take on two other part time jobs in order to make ends meet. I have had to adjust to him being gone working a lot and me then being left to raise our three young children mostly alone while dealing with chronic illness and pain.

5. Most people assume: That my surgery "fixed or cured" me. Because I "look fine" on the outside, that must mean I really am fine.

6. The hardest part about mornings are: Dealing with the pain I feel as soon as I wake up and forcing my sore and stiff joints to move. Also, some mornings I am exhausted as soon as I wake up as if I hadn't slept at all during the night.

7. My favorite medical tv show is: I really don't have one. I did enjoy watching "NY ER" over the summer. I like to see 'reality' medical shows. But, watching those shows sometimes makes me miss working as a nurse.

8. A gadget I couldn't live without is: My iPad and iPhone. Yes, I know, that makes two but I use one more at home and one when I'm not home.

9. The hardest part about nights are: By nighttime, I am usually in a lot of pain in my neck and back. Because of the pain, it can be difficult for me to get comfortable and fall asleep even though I am usually completely exhausted.

10. Each day I take ___ pills. 3 every morning and then, depending on my pain levels, another two or three if I need them.

11. Regarding alternative treatments, I: am a believer that they can help some people. However, most of them are quite costly and are not covered by insurance. I don't exactly have any extra money to spare on a treatment that may not help me. I am currently receiving trigger point injections in my neck and back which do help some, although they don't last more than two weeks for me. Thankfully they are covered by my insurance. I am always researching the possible benefits of various alternative treatments and diet changes.

12. If I had to choose between an invisible illness or visible I would choose: Um, can I say neither??  Anyway, I guess having an invisible illness is nice because you don't have to field any "nosy" questions or peoples stares. I always joke that at least I still "look good" even though I feel awful. However, because I look so normal, when I do need to use a wheelchair or need assistance, people look at me like I am crazy or lazy or they just assume that I look fine so I must not really need help. This definitely does hold me back from using assistive devices or asking for help from those who don't know me or my situation.

13. Regarding work and career: The most important job I have right now is that of wife and mother. Being a stay at home wife and mom is no easy job. I give all the energy I have in a day to my family and I do this with complete joy. I am blessed with an amazing husband and three beautiful children, who are the reason I get out of bed each day.

14. People would be surprised to know: that I still grieve the loss of my health. I haven't reached full continual acceptance of it all yet.

15. The hardest thing to accept about my new reality has been: That I may feel this way for the rest of my life. I am not that old, at least I don't think 34 is old, and the very thought of this still makes me very emotional and even depressed.

16. Something I never thought I could do with my illness that I did was: Be able to find the good in the hard things that have changed my life forever and joy despite my struggles. I am learning to be grateful for and find joy in every day life, small things, big things, things I never would have thought of before, things that I took for granted before illness entered my life.

17. The commercials about my illness: I really don't pay any attention to commercials. I hate them and I think the invention of DVR is one of the best things ever just so that I can fast forward through commercials. I also hate the way that commercials make it seem like one pill can take away all the symptoms when the reality is for most people that the side effects from the pill are worse than the symptoms of the condition itself.

18. Something I really miss doing since I was diagnosed is: I just really miss feeling healthy and being pain free.

19. It was really hard to give up: Control. I was a major "control freak"in my pre-illness life.

20. A new hobby I have taken up since my diagnosis is: blogging. I started my blog to share my story in order to hopefully help someone else going through similar struggles, and also bring awareness to my chronic conditions.

21. If I could have one day of feeling normal again I would: Spend the whole day with my family, running around and playing actively with my kids.

22. My illness has taught me: Oh wow, so so much. One thing I have learned is that I am stronger than I ever thought I was. Also, with regards to my faith, I have learned that God is still good even when He allows sickness and suffering to come in my life. He has faithfully taken care of me and my family through this whole journey and He gives me the strength I need to get through every single day. I also understand empathy and am more compassionate towards others. I've also learned to give up control and not to 'sweat the small stuff' because my body no longer deals well with stress, so I don't stress over things as much as I used to, if I can help it.

23. Want to know a secret? One thing people say that gets under my skin: To just "push through". Seriously…..what do you think I'm doing by just being out of bed, dressed and out of my house?? I push through exhaustion and pain to some degree every day.

24. But I love it when people: Ask about how I'm feeling or about my conditions and are truly interested in my answer and are supportive.

25. My favorite motto, scripture, quote that gets me through tough times is: Psalm 46:1 "God is our refuge and strength, an ever-present help in trouble."

26. When someone is diagnosed, I would like to tell them: That they can get through this and they are stronger than they ever thought.

27. Something that has surprised me about living with an illness is: the loneliness and isolation that I feel because of it.

28. The nicest thing someone did for me when I wasn't feeling well was: to take care of my children for me and be their chauffeur to extracurricular activities.

29. I'm involved with "Invisible Illness Week" because: I want to join this movement of bringing awareness to "Invisible Illness".

30: The fact that you read this list makes me feel: Grateful and humbled that you cared enough to read through this lengthy post!

Lately...

Wow, has it seriously been over two months since I wrote on here? Where does time go? I swear the older I get, the quicker time flies. 

While I was MIA on here, I have been keeping quite busy managing my kids and house plus dealing with my ever present companions "chronic pain" and his side kick "fatigue" along with their many, many friends that join in on the "chronic conditions" road trip. 

Honestly, I have been struggling a lot physically and emotionally during the last couple months. I started having some frequent and, at times, disabling headaches again which completely scared me that the Chiari headaches were coming back. Through much research, I finally figured out that the headaches might be a side effect of the medication for nerve pain I was on, called Neurontin. I had a few other side effects and felt that the drug was not really helping me, so (with Dr approval) I decided to wean myself off of it and once I did, the headaches and side effects subsided. I was so relieved! 

Otherwise, I'm status quo on the Chiari, Dysautonomia, and Fibro front. I still have good days and bad days and have to be very careful not to push myself too hard and try to avoid stress as much as I can. 

I made a huge decision with regards to my emotional health and finally went to see a counselor. I knew that I had not processed through all the trauma and changes that had occurred in my life since the car accident that started this whole mess. I just needed a place to pour out how I felt without feeling like I was burdening my family and also without feeling judged for my feelings. My family has been absolutely amazing throughout this but it has taken a toll on them as well and I always worried that my pouring out all my messed up feelings would place more burdens on them. (I'm a recovering "people pleaser".  Is that okay? HaHa! ) 

Overall, the counseling was a decent experience. I don't feel that the counselor and I really clicked completely but I was able to talk through my feelings and begin to work through all that has happened to me in a healthy way. 

Through all that soul searching, I thought a lot about the changes that have happened in my life. 

The moment that car accident occurred on August 12, 2012, I was forever changed and I had no idea how much at that time, but God did. 

I had no idea that it would lead to a diagnosis of Chiari and that I would face brain surgery.

 I had no idea that I would live with chronic illness and pain. 

But, He knew and He allowed that to enter my life. God has walked beside me as I have gone through it all. Deep in my heart, I have questioned why He allowed it and I may never know this side of heaven. I have struggled in my questioning and the darkness of pain both physically and emotionally to be able to feel close to God. I became angry and overwhelmed by the weight of it all. I began to distance myself from him simply because I chose to give in to Satan's mind games and allow myself to focus too much on the why, the loss I feel about it, the confusion, the pain, the exhaustion, the financial concerns we now have, the effects of my illness on my family...I could go on and on. 

Basically, I was focusing on all the bad and not focusing on the good. 

Not trusting God. 

Not reading His Word. 

Not praying enough. 

Staying in my own depressed little world in my head. 

I gave up. Just quit fighting. 

And I was wrong. So very, very wrong!

God faithfully, lovingly showed me where I was wrong and drew me back to him.

 He gave me the courage and strength to fight again. 

To fight the depression. 

To choose joy!

 To choose to trust in His plan! 

To remember and trust that even when I can't see him working, He is!

He reminded me that he knows, he cares, he forgives and he loves me despite my failures to trust him. 

Despite my questions. I'm so grateful to have a loving Heavenly Father who cares for me! 

He knows my pain. He sees my suffering. And, He doesn't leave me to bear it alone. 

So, I am fighting again. 

I'm fighting to choose joy every day. To take in the good moments. Really breathe them in and cherish them. To fight satan and his oppression. To trust God and fully rely on Him for what I need every day. 

(Source)

Dysauto…what?

So yeah…its been a little while since my last post.

Honestly it is because I have been feeling so terrible lately that I haven't even been able to get myself and my thoughts together in order to formulate a post. 

I have had to use all of the very little energy I have to just get through most days, being a wife and mother and trying to keep up with the demands that those roles present me. 

Here is what has been going on….

At the beginning of March, I finally scheduled an appointment to see my primary care doctor because I had been dealing with some worsening heart issues. I had begun to have frequent heart palpitations, tachycardia (fast heart rate) and some occasional shortness of breath and chest tightness. I have had heart palpitations since I was 18 years old and have had them evaluated many times over my adult life. I have a heart murmur which was found to be benign and have been told that the palpitations are also a benign thing and were just something I would have to live with. But, the tachycardia and shortness of breath were new and disconcerting, so I drug myself out of my state of denial that I was having these problems and went to the doctor. When I went to my doctors appointment, they noted that my blood pressure was high in the mid 140's over 90's range. I was shocked! I have never had high blood pressure. This new issue in combination with my heart rate as high as 125 at times, palpitations and other symptoms prompted the doctor to order further testing for me. I wore a holter monitor for 24 hours which is basically where you wear a small iPod sized heart monitor with special stickers called leads attached to certain areas of your chest. It records the heart rhythm continuously during the time you wear it. This came back showing a fast heart rate at times with PAC's and PVC's (palpitations or skipped beats) but in normal rhythm otherwise.

 In the meantime, I also had an appointment with my rheumatologist because I have been having worsening joint and muscle pain. He felt that there was a possibility that the anti-inflammatory drug I had been taking for the joint pain, Mobic, could be causing the high blood pressure and advised me to stop taking it. He also started me on a drug called Neurontin, which is used to help chronic joint, muscle and nerve pain. Going off of the Mobic was brutal because I didnt realize how much it was actually helping with my pain. The Neurontin takes a couple of weeks or longer to work so I was miserable during that time. My pain levels on some days were literally more than I thought I could bear. Imagine the worst flu aches possible and then double that. It was awful! I also continued to have higher blood pressure than normal for me even one reading as high as 153/95. 

I followed up again with my primary care doctor last week and we discussed my heart symptoms as well as the other symptoms I have been dealing with for the last almost year. My rheumatologist had previously told me that he feels my issues are from Dysautonomia which just means disfunction of the autonomic nervous system. It has caused my Fibromyalgia like symptoms and now my primary care doctor feels that it may be responsible for my heart issues as well. I have done a lot of research about Dysautonomia and have found that many people who have Chiari Malformation also develop Dysautonomia. Dysautonomia can result from damage done to the brain tissue, nerves and therefore nervous system. This damage is done by compression of the nerves and brain tissues caused by the herniation of the cerebellar tonsils (Chiari Malformation) and resulting blockage of normal cerebrospinal fluid flow.

My symptoms of Dysautonomia are:
tachycardia (fast heart rate), palpitations, shortness of breath, chest discomfort, lightheadedness, exercise intolerance, severe fatigue, weakness, joint and muscle pain, tremors or feeling of shaking inside, heat/cold intolerance, foggy thinking, blood pooling in legs, insomnia.
I have most of these symptoms every day in varying degrees of severity, and I never know how I will feel when I wake up.

This article describes the many possible symptoms of and the treatments for dysautonomia. This quote from that article really describes what it is like to have this condition:

"How does someone with dysautonomia feel?"

"A person with dysautonomia can have a multitude of ever-changing symptoms. One day may be a good day with little symptoms, followed by three days of feeling awful and unable to do much at all. For the most part, there is no rhyme or reason to the symptoms someone with dysautonomia feels. There is no way of knowing or controlling these symptoms."

To treat my heart issues, my doctor prescribed Atenolol, a beta blocker which will hopefully slow my heart rate and lower my blood pressure to normal. Beta blockers are common treatments for those of us who have heart related symptoms from Dysautonomia. The Neurontin that I am on for pain is finally starting to work a little after being on it for three weeks and increasing the dose a bit. I am hopeful that I start to feel more improvement in my symptoms as I continue taking these medications.

So yeah, another diagnosis, another pill, frustrating symptoms….I am really over it all. I know I have spoken about keeping my positivity through all this in other posts. But, I also don't want to be disingenuous about things either. Honestly, I have been in an emotional tailspin at times lately. There are times where I just struggle to understand why God allowed this in my life. Why did he allow the car accident? Why did I have to develop these conditions? Why do I have to live with chronic pain? I know He has a plan for all things and He never makes mistakes. But, in my humanness, I wonder what purpose this has? I know I will never completely figure this out or understand it this side of heaven. I have to trust that God sees the bigger picture and if He brought me to it, He will bring me through it! Im thankful that despite my human emotions and lack of trust in Him at times, He never gives up on me. He never leaves me and He always loves me!

For those of you who would like more detailed information on Dysautonomia, this link describes its causes and symptoms.

Also, DINET (Dysautonomia Information Network) has a wealth of information available if you or someone you know is experiencing any of the symptoms associated with Dysautonomia.

Marriage and Chronic Illness

Today I wanted to share my thoughts on how chronic illness affects marriage. In my case, my whole journey from the time of the accident until this moment has absolutely strengthened my marriage and brought my husband and I closer than ever. But, we have had a few struggles along the way, and I am sure we will face more. However, we love each other and are committed to walking this life journey together, no matter what we may face. I read this quote from Focus on the Family and it hit home about the toll that chronic illness takes on marriage.

"Nearly half of all Americans live their day-to-day lives with at least one chronic illness as a companion. Cancer, diabetes, heart disease, chronic fatigue syndrome, Crohn’s disease, asthma, arthritis, lupus, sickle cell anemia and a host of other conditions pillage millions of personal lives and marriages each year. Statistics show that over 75 percent of marriages plagued by chronic illness end in divorce." ~ Focus on the Family

The truth is that chronic illness is tough on a relationship. It can be very stressful and even isolating to both of us. I have an invisible illness, meaning that I look completely normal and healthy on the outside. No one can tell unless they know me well. Even then, most days I put on a good front, for the main reason of not wanting my children to feel the burden of seeing me not feel well. But, my husband knows me well enough to be able to see through my tough front. It is hard for him to see me struggle with the things I deal with on a daily basis.

Because I have found that there is very little information about dealing with chronic illness in marriage, I want to share just a few tips that I have found helpful not only with regards to marriage and chronic illness but that also can apply to marriage in general. I am in no way an expert, but these are things that I have found to be helpful.

Tip #1 - Keep Talking.

On our wedding day as a young couple age 19 and 20, we vowed "In sickness and In health". We got the "In health" part but we just didn't think much about the "In sickness". As young and healthy people, we thought more about sickness being a cold or the flu, not a serious and life altering chronic illness. When we were hit with my health crisis, we handled it well with regards to our relationship. But, as time progressed and recovery didn't go as planned, the stress began to take its toll on both of us. We each had very different emotions about it, and I was experiencing physical symptoms that he could not relate to. Because of that, it became hard for us to communicate those feelings to each other and really feel like the other was understanding. Once we realized this, we agreed that we have to keep talking to each other and try to see each other's point of view. We can't take what the other is saying as a personal attack in any way. We have to just accept what each other feels and try to be sensitive about it. Also, I tend to be the type of person who holds things in because I don't want to burden others, but I have found that this is toxic to my marriage. Because I hold things inside, I then end up frustrated because he isn't meeting needs that I haven't even told him about. I have to remember that if I don't tell him, then he doesn't know. He knows me well but he is not a mind reader!

Tip #2 - Men and women respond differently to things.

My husband has said many times how difficult it is to see what I deal with in regards to my physical issues. As hard as I try to hide how I am truly feeling physically, he knows me well and can tell by the sound of my voice or the look in my eyes exactly how I am feeling. Having a wife deal with serious or chronic illness is especially hard for men in general, because their very makeup is that of protector and rescuer for their wives. They want to fix the problem, but with chronic illness, they can't fix most or any of what we deal with. As my husband has shared with me, it leaves him feeling extremely helpless and many times frustrated and stressed. I try to keep this in mind and it helps me to understand his responses to me.

Tip #3 - Acknowledge that changes not only affect me but my husband as well.

I know that I am a different person in many ways than I used to be. Some are good! I am a more patient, less controlling person. I see life in a more positive light. I let the little things go most of the time. But there are also negative changes. Chronic pain and illness takes a toll on a person. I went through every stage of grief about my condition, surgery and recovery and sometimes went back and forth between stages. I have been in denial, angry, and depressed. Finally, I am mostly in the acceptance stage. But, I still have days when I am physically and emotionally just down. I struggle to see past the challenges my body is throwing at me and I can get very overwhelmed. I also struggle to cope with meeting the daily demands of motherhood and that doesn't leave much of me left for him. I have to remember that what I am going through not only affects me, but him as well.

Tip #4 - Pray!

My faith is truly what has helped me through each day since I developed my illness. It is incredibly important to me! I have been a Christian since I was a young girl. I know that God has faithfully guided my life, loved me and gave me grace when I messed up, drawn me to himself over and over when the things of the world tempted me to turn away from Him. Without God, I wouldn't be who I am today or where I am today. Truthfully, without God, my husband and I would likely be divorced. Many years ago, we went through a very dark time in our marriage and because of our faith and commitment to honoring our vows, we worked through our struggles and our marriage survived. We know we did not make that happen on our own. It is all because of God! 

Now as we have dealt with my illness and all of the changes that has brought to our lives, we have both relied on God for peace, comfort and strength. We have had our times of doubt, of asking why did He allow this, of feeling overwhelmed and exhausted. But, He has been so faithful to us! When we have needs, we pray and ask for his help. We pray for strength when we feel weak. And, over and over, God has provided! We can look back over the last year and a half and see his faithfulness and his provision.

To end this, I want to say that I am thankful for an amazing husband who loves God and loves me, is committed to our marriage, and works hard to provide for our family. I am so very blessed that God gave me such a wonderful man to share my life with!


Blessings,

Sonya


PS. Please share your thoughts or tips about marriage! I would love to hear from you!

He Knows

Several months ago, my Mom found the poem below in one of my Grandma's Bibles. It is obviously an old poem but the words are still so true.

I remember sobbing as Mom read it to me because it struck me with this amazing truth...God Knows. 

He knows what we are going through. 

He knows why we are going through it. 

He is not surprised by anything. 

He knows our pain, our sufferings.

He knows. 

And, He loves us and cares…So much!

All we have to do is rest in Him, knowing that we can trust him!

He Knows

E. Margaret Clarkson

He knows it all - the winding path,

The sky o'ercast and grey,

The steepness of the mountain side,

The roughness of the way.

He knows it all - the haunting fear,

The doubtings and distress,

The wanderings and perplexities,

And all the strain and stress.

He knows it all - each troubled thought,

Each anxious wave of care,

And every burden, every grief,

Or cross that thou doest bear.

He knows it all - thy weight of woe,

Thine often tear-dimmed eye,

The stabbing pain, the slow, dull ache,

And sorrow's broken cry.

He knows it all - but His to choose

And thine to take His choice!

He knows it all! He planned it so!

Then trust Him, and rejoice.

Banana Oatmeal Breakfast Muffins (Wheat Free)

Hi all! Happy Hump Day!

Today I want to share a delicious muffin recipe that I have discovered. I am trying hard to stay on my wheat-free diet, but I really miss my familiar carbs. In fact, I crave them! Wheat/gluten free bread and muffins are mediocre at best and there are days were I just want to enjoy delicious, comforting carbs.  :)

I was overjoyed to have found, on Pinterest- where else?, the easy, wheat free, delicious muffin recipe below and I wanted to share it with you. These muffins are delicious whether you are wheat/gluten free or not! 

Banana Oatmeal Breakfast Muffins

Original Recipe Source

Ingredients:

2 1/2 cups old fashioned oats (can use gluten free)

1 cup plain greek yogurt

2 eggs

3/4 cup sugar (I use raw cane sugar)

1 1/2 tsp baking powder

1/2 tsp baking soda

2 ripe bananas

Preheat oven to 400 degrees. Spray 12 count regular size muffin tin with nonstick cooking spray or line with foil liners. 

Place all ingredients, except oats, into blender or food processor. Pulse to begin blending. Add oats 1 cup at a time, blending in between until smooth. (There may still be a few oat pieces visible. Thats totally fine.) Blend until it looks mostly smooth.

Fill muffin cups 3/4 way full.

Bake for 15- 20 minutes (depending on your oven) or until golden brown and toothpick inserted in center of muffin comes out clean.

Mine look darker in the picture above because my oven has decided not to bake at an accurate temperature or evenly at times. I used to bake these for 17 min and they came out perfect. This time they got darker than normal at that time, but they were still moist and delicious as usual!

 Enjoy!!

Tips:

• These freeze well! Just take a frozen muffin and microwave for approx. 30 sec or until warm through.
• You can substitute low fat vanilla yogurt or vanilla greek yogurt for the plain yogurt. They turn out great.
• You can also top these with a few chocolate chips for a little something extra.
• Also, add 2 tbsp ground flax or chia seed to up the nutrition in these muffins.

Blessings

Source

I love the sentence above!! Don't you? What a wonderful thought!

It goes along with my new outlook on my life and my plan for what I share on this blog. I want to talk more about my blessings and share the beautiful things in life that bring joy. I want to be an encourager! My Mom is a wonderful example of being an encourager. She exudes joy and is always positive and I know much of it comes from her strong faith in God!

Do I have struggles? Oh yes and some days, they weigh heavily. But, I have a Heavenly Father who loves me and cares so much about my burdens. He is greater than all of my struggles, greater than anything that may come my way. I can leave my worries in God's hands and trust Him for everything I need for this day! Because of that, I can focus on the blessings and find true joy!

I am blessed in so many ways! Blessed far beyond what I deserve! 

Blessed with a wonderful husband who loves me! Blessed with healthy, beautiful children! Blessed with a loving, supportive family! I could go on and on. 

When I choose to focus more on His goodness, my outlook on life begins to change. I see the blessings and joy in life more than I see the difficult things. I am by no means perfect with this, in fact my natural bent is toward seeing the negative. I have to be purposeful in looking for the good in every situation, every day. For me, it is a choice! I encourage you to choose to see the blessings, the joy and the beauty in life, today!

I would love for you to share some of your blessings with me! Leave me a comment below and let's encourage each other by talking about our blessings!

Choosing joy,

Sonya

Chiari Surgery and Recovery

In the dark, snowy, early hours of Friday, January 25, 2013, Danny and I made the 45 minute drive downtown to Good Samaritan Hospital.  We had to be there at 5:30 am to get all the necessary pre-op things done for my 7:30 am surgery. I felt this incredible sense of peace through the entire time I was getting prepped for surgery. I felt secure in the knowledge that God was with me through this and He would bring me through. I could feel the prayers of my family and friends. It wasn't until I was being wheeled away from Danny that a flood of emotion hit me and tears began to stream down my cheeks. He hugged and kissed me, told me he loved me and that everything would be okay. And as I was wheeled back toward the operating room, I once again felt the peace and comfort from the Lord flood over me!

The first thing I remember after surgery is waking up in the post op recovery room and realizing that I had all kinds of "lines and tubes" coming out of me, but then thinking "Wow, I'm awake. Thank God I woke up!" I was in a lot of pain! I felt as if they had taken a baseball bat and hit me hard in the back of my head. It was excruciating! Worse pain than my three natural childbirths!!

Most of what I remember from the hours right after surgery is how bad I hurt and how nauseated I was. The nurses were amazing and took great care of me. They were able to get my pain medicine switched to another type which was equally effective but did not make me nauseated. In spite of the surgical pain, I could tell that the surgery had already worked in some way because I no longer had that awful headache and pressure which I had prior. I also did not have the tingling in my right hand and foot. This was a wonderful thing for me to realize, because it helped me to tolerate the post surgery pain and know that it was all worth it because the surgery was successful. I remember very little of my hospital stay. Really just bits and pieces of those few days. I was on a ton of pain medicine and other drugs.

Here is my surgery site, the day after my surgery. 

I stayed in the hospital until Monday. So, 3 1/2 days total. Once at home, Danny took amazing care of me! I stuck to my schedule of pain meds and muscle relaxers as prescribed and was able to manage the pain quite well. I still have very little memory of the first couple of weeks I was home. I believe that it was from all of the medication I was on, but also from some effects on my cognition and memory from the Chiari and surgery. More on this later….

Before surgery, my doctor had said that I would be off work for at least 3 months. But, it could take me up to a year or maybe more to heal from this surgery. It takes the brain and nerves a very long time to heal and as is common with any brain condition, it can be unique to the individual.

At 4 months after surgery, I still had some discomfort in my neck, which was manageable. I was still struggling with some cognitive problems. I was forgetful and overall had that "foggy" feeling in my thinking. I didn't feel like myself at all because of this. The surgeon felt that my thinking may clear up with going back to work and focusing my brain on that again. I knew that I still remembered how to do my job well and did not feel that my cognition was so poor that I would be unsafe to return to my nursing job. So, I returned to work on a modified schedule, as prescribed by my doctor, of four hour shifts to begin with, just to ease myself back into that environment. By my second shift back to work, I realized going back was way harder on me that I ever thought it would be. While at work. I felt like I was "in a twilight zone", like my brain was on overload in that environment. It felt like I just could not mentally keep up. Plus, I was dealing with a lot of neck pain, so the combination of physical and mental stress was simply more than I could handle. I would come home from those four hour shifts completely exhausted and in a great deal of pain. I would have to go straight to bed for the rest of the day. At some point in my second week after returning to work, I developed severe joint pain, stiffness and swelling, and my body just hurt all over. I was dizzy, fatigued and weak to the point that I could barely get out of bed at times. It was like the stress of returning to work shoved my body over the edge and caused a major setback in my recovery. I wrote in my journal around that time, "I have always been the type to 'Just pull myself up by the bootstraps, and go on', but now I have straps that are barely holding on by a thread. I fear that if I pull on them, they may break off completely and then I will break completely."

My neurosurgeon instructed me to return to my primary care doctor, so I did. He did a bunch of blood work, most of which came back normal. He felt that I just needed more time to heal from the surgery, so he placed me back on medical leave from work. I remained off work for another 3 months, hoping my condition would improve. But, it didn't. I still had all of the joint and body pain, fatigue, weakness, plus my cognitive issues had not resolved. Cognitively, I was no better and at times actually felt it was worse. During this time, Danny and I realized that I was not going to be able to return to work. What energy and abilities I had, I needed to focus them on being a wife and mother. As much as my family needs me and I love taking care of them, giving up my part time nursing job was a hard thing for me to come to grips with. I enjoyed being a nurse. It was a big part of me, a part of my identity. Giving that up was what forced me to accept that I was different. That Chiari and surgery had changed me. Accepting that was the last thing I wanted to do. I felt that if I accepted this, it meant that I had failed in some way. I so badly wanted to be back to normal again, to how I was before the accident. I wanted to be that happy, spunky, "quick-thinking", energetic girl again. I just wanted to be back to my old self. Despite my surgeon telling me that surgery was not a cure, I expected and hoped to wake up and eventually return to normal. When this didn't happen as I hoped, I became depressed. These were some dark times for me!

In the first part of September, I saw a rheumatologist who diagnosed me with Dysautonomia and Fibromyalgia. Dysautonomia is dysfunction of the autonomic nervous system, which is controlled by the brain stem, and has many different symptoms associated with it.  He stated that I likely have brain tissue, nerve and/or nervous system damage from the Chiari and possibly from the surgery. The Fibromyalgia is caused by this damage and dysfunction of the nervous system. He stated that these issues could improve with more healing time or they may not. He also felt that my cognitive issues could be related to brain tissue or nerve damage as well. In my research, I have found that a lot of people with Chiari deal with cognitive problems. "Foggy thinking" is also a complaint for many with fibromyalgia.

At this point, I am still dealing with all of the same symptoms as I was a few months ago. I am on a medication which helps to relieve some of the joint pain. I have cut wheat and most gluten out of my diet and have been trying some "natural" treatments with vitamins and herbal supplements. It is still a work in progress. I haven't found the exact regimen that manages my symptoms. I do have some good days where my energy is better than others but I have to pace myself. If I push too hard, I pay dearly the following day with fatigue and increased body pain. I also have random "flares" of body and joint pain, and have noticed that I those much worse with all of this cold weather we are having. I wish I could live in a warm bubble! :)  I am also still struggling with cognitive issues. I have short term memory issues at times, for instance I do things like put things in the wrong places and forget why I go into rooms. I have some difficulty focusing and retaining information. Doing things like making a grocery list or weekly meal planning is a struggle at times. I also struggle with getting the right words out. This can get quite funny sometimes! :) I find my mind going "blank", and I can't think clearly when I am in any stressful situation. I have an appointment with my neurologist tomorrow to talk about these issues. He hoped that by a year after surgery, these cognitive issues would improve. Since they have not, I am hopeful that there may be some therapy or something that he could recommend to help me. I have tried lumosity.com, word puzzles, things like that to try to help my brain along. So far, I haven't seen a great deal of improvement.

I recently celebrated my one year "zipperversary", as us Chiarians like to call it. It is hard to believe that it has been one year since my surgery! Despite the issues I still have, I feel that my surgery was successful. It did relieve my severe symptoms. I am not the same as I was before the accident and neck injury caused the Chiari to probably worsen and then become symptomatic.  I will never be the same again. And, I have finally accepted that.  I can't let myself stay discouraged by how I wanted things to turn out or I will never enjoy the wonderful life I do have. I can take control of the things I can change and accept the things I can not control, like my chronic conditions. I can take care of the "new" me by eating a clean diet and learning to live with and accept my limitations. Plus, I know that the biggest thing I can control is my attitude and outlook on life. I may never understand why God allowed this is my life, but I can choose to find the joy in every day He gives me. I can choose to find joy even on the days when I feel the worst. I am determined to not give up but to choose joy every day! God has richly blessed me by showing me his faithfulness through all of my struggles, and because of my relationship with Him, I can have true joy in my life!

Thank you for taking the time to read my story! I am so grateful for all the support from my friends and family for me starting this blog and sharing my story.  For anyone who may read this and is struggling with Chiari or any chronic illness, please feel free to contact me with any questions that you might have or if I can help you in any way!

My Chiari Story - Part Two

When we left off yesterday, I had just had an MRI of the brain and the results came back showing "Chiari Malformation of 5 mm". The neurologist whom my primary care doctor referred me to said they could not see me for 6 weeks. At this point, I felt that my condition was rapidly worsening.  I was scared to death and I desperately wanted answers. I began to research Chiari even more. I finally found that there was a neurosurgery group in Cincinnati, Mayfield Clinic, who had a specialized center for persons with Chiari Malformation. Their site was extremely informational, and recommended that any person diagnosed with Chiari consult with a neurosurgeon. The site also described a surgery that could treat the condition and possibly relieve some or all of the symptoms. That was my first glimmer of hope!

Source

I called the Mayfield Chiari Center appointment number listed and one of their very helpful patient reps walked me through a detailed interview process about my MRI results, current symptoms, past medical history and then instructed me to send my MRI report to them. I did and within a week, he called back and I was scheduled to see one of their physicians. It still was going to be a month before I saw the doctor but I finally felt that I was on the right track to getting some answers and help.

On October 24, I awoke with a severe headache…the worst one I had ever had. It was unrelenting despite the prescription pain medicine I took. Along with the headache, I had right arm and leg weakness, and tingling in my right hand. It was so scary! My parents and husband gathered by my bed and prayed over me for relief from the pain. Within an hour, the headache had eased some and I was able to rest. From that day forward, my symptoms were worse than ever. I was never without a headache and pressure in the back of my head. My vision became blurry at times. I was very dizzy and could not bend over without feeling a huge increase of pain and pressure in the back of my skull. I also could not lay flat without getting horrible pain and pressure, thus causing a lot of sleep issues for me.

On November 14, I was finally able to see a neurosurgeon at Mayfield Clinic. He agreed the my MRI did show Chiari Malformation and my symptoms did sound like they could be related to Chiari. He stated that to be sure, I needed to have a specialized test called a Cine-MRI, which checks for adequate flow of cerebrospinal fluid around the brain. What can happen with Chiari Malformation is that the herniation of the cerebellar tonsils can cause blockage of the cerebrospinal fluid (CSF), causing increased pressure in the head and also resulting in compression of the brain stem, other brain tissues, and cranial nerves. If this blockage goes untreated, it can cause a build up of CSF on the spinal cord called a syrinx or syringomyelia. This can lead to paralysis. The blockage can also cause many other issues inside the skull.

If the Cine MRI showed that I had blocked CSF flow, then I could potentially be a candidate for a surgical treatment.

The following week, I had the Cine MRI. It wasn't as bad as I anticipated because it only took 15 minutes. I then had to wait 3 more weeks before I saw the neurosurgeon again, to get my results. That was the longest 3 weeks ever! Absolutely grueling!! But, I held tightly to God and He faithfully gave me the comfort of His love and peace!

In the meantime, my symptoms only continued to increase in number and severity. I was having more painful daily headaches and an increase in the number of weekly severe headaches. These were my symptoms:
Daily headaches and head pressure in back of head. (I was never without a headache)
Severe, debilitating headaches 3-4x a week.
Increase in headache pain/pressure when bending over or bearing down, coughing, sneezing
Dizziness
Balance issues
Ringing in my ears
Tingling in my right arm, hand and foot.
Weakness in my right arm and both legs.
Diminishing fine motor skills. (I dropped things a lot)
Blurred vision, spots in my vision
Forgetfulness and memory issues, overall "foggy" thinking
Insomnia
Nausea

I saw a neurologist on December 3rd and he stated that he felt my symptoms were from Chiari and felt that I could benefit from surgery if a candidate. He started me on Amitriptyline to help with the headaches (which never helped at all).

Finally on December 12th, I returned to the neurosurgeon. He stated that my Cine MRI did indeed show a blockage of CSF flow and Chiari Malformation of 8 mm. He stated that with my rapidly worsening condition and the results of the MRI, I should consider having surgery. The surgery is called Posterior Fossa Decompression. Basically, what they do is surgically make the opening at the base of the skull, called the Foramen Magnum, larger and remove the back portion of the top of the spine (C-1). They also cut open the outer layer of the brain, the dura, and sew a patch in place to allow the brain more room and achieve normal CSF flow.
If you are curious, here is a more detailed description of the surgery from Mayfield Chiari Center site:
http://www.mayfieldchiaricenter.com/chiari_surgery.php

My neurosurgeon felt that I had a very good chance of the surgery being successful and relieving my headaches, head pressure and severe neurological symptoms. The surgery also halts the progression of the condition thus preventing further damage to the brain. He advised me that he could not guarantee that it would relieve all of the symptoms I was having, because Chiari and the blockage of CSF can cause damage to the brain tissue and nerves which may be irreversible. He also said, "Surgery is only a treatment, not a cure."

My surgery was scheduled for January 25, 2013. As devastated as it was to hear that I needed brain surgery, I was relieved that there was a treatment that could halt the progression of the condition and hopefully relieve the severe symptoms I was living with. I felt such a peace from God throughout this whole time. I knew that He was faithfully guiding my steps, leading me to the right doctor who could help me, giving me the strength I needed to get through each day, and comforting me with His love in the darkest of times.

Throughout this entire time and up until the day before my surgery, I continued to work 2 days a week as a RN. By the grace of God, I never had severe headaches while at work. I was able to manage the worst of my symptoms with medication, without impairing my abilities in the least. I only missed a couple of days or had to leave early a few times throughout those months. I look back now and realize that I was stressing my body very hard, really beyond what I should have, but I did what I had to do at the time. I have often wondered how in the world I managed, but I know I did not do it with my own strength but with the strength God gave me every day.

Thank you for reading this part of my story! I will share about my surgery and recovery tomorrow.

My Chiari Story - Part One

Today, I want to begin to share my Chiari story with you. This is Part One. I am splitting it up because if I put it into one post, it would take a while to read and "Ain't nobody got time for dat!".  :)

To begin, I feel like I should give you a bit of history about me. I am married to Dan, the love of my life. He works as a full time Firefighter/Paramedic.

This is us at our wedding in June, 2000. We were so young and in love!! Still are (in love that is)!

We have three amazing, beautiful children together.

Here they are this past Christmas. I love them to the moon and back!

I worked part-time as a registered nurse in a post-op surgery unit at a local hospital. 

Then, life as I knew it changed…in an instant. Here is my story!

August 12, 2012 started as any normal Sunday would. We went to church, then came home for lunch before heading out to the mall to Build-A-Bear to surprise our youngest daughter with a bear making adventure for her birthday, which was the next day.  We were driving down a narrow country road that we routinely travel when I felt our car abruptly slow and looked up to see another car careening side ways down the road toward the front of our van. I will never forget the horror of that moment as I watched the car hit us, felt the hard jolt of impact, heard the crunch of metal and breaking of glass and the fear of if my children and Danny were hurt. Only a few seconds later, I realized that everyone but me was okay and little did I know how badly injured I was and that I would never be the same again.

I sustained a whiplash neck injury and shoulder sprain in the crash. About 2 weeks after the accident, I began to notice that I had a very odd pressure in the back of my head near the base of my skull. My doctor felt that it was due to the neck injury, so I brushed it off. As the days and weeks went on, the pressure worsened and I began having headaches in that same area. I had dealt with headaches before but never in the back of my head. Finally, toward the end of September, my doctor sent me for a Cervical Spine MRI to look for any possible disc problems or other issues from the neck injury. The report came back with no major findings of spine issues except for a couple small bulging areas on two discs. It also read, "cerebellar tonsillar ectopia of 4 mm noted". By this time, it had been nearly 2 weeks since my MRI and my headaches were becoming more frequent and were worsening with pain radiating behind my eyes. I was also having dizziness and tingling down my right arm to my fingers. My primary care doctor said, "I don't think the findings on the MRI is anything to worry about, but since you are having worsening headaches, lets do an MRI of the Brain to take a closer look."

Being a nurse and also having never heard of "cerebellar tonsillar ectopia", I began to do research on the internet. I found that this condition is when part of the back portion of the brain, the cerebellar tonsils, herniate through the hole at the base of the skull where the spinal cord comes through from the brainstem. This places pressure on the brainstem and cranial nerves, and blocks the normal flow of cerebrospinal fluid around the brain. This condition is also called "Chiari Malformation". I realized that many of the symptoms I was having could be related to having this condition. I just had to wait and see what the brain MRI said.

So, I endured yet another MRI. I hate them…with a passion!! I am terribly claustrophobic and having a neck or brain MRI done is particularly torturous because your head is placed in a cage type contraption which prevents you from moving. With the neck and head pain, this was very painful for me! The whole process was indeed a nightmare!!

My doctor called me a few days later with results that confirmed a Chiari Malformation of 5 mm. He said, "I think this is a benign type of condition and I doubt it is causing your symptoms, but you need to see a neurologist to find out for sure."

My symptoms had only continued to worsen by this point.  I was having daily headaches and 1-2 severe headaches a week, which were becoming difficult to manage with over the counter medications. I was nauseated, very dizzy and losing my balance frequently. I literally felt that something was very wrong in my body, and it was rapidly getting worse. Through all of my research, I felt that the possibility was strong that Chiari was causing my symptoms, and the worst part was that everything I read said these frightening words, "There is no cure for this condition."

Come back tomorrow to read Part Two of my story!

I'm finally doing this..

After many months of thinking about it, I finally am doing this. I have started my own blog. One purpose for this blog is to share my story of how my life changed after being diagnosed with a brain condition called Chiari Malformation, and to support and encourage other people living with Chiari and chronic illness. Since developing this condition, going through surgery to treat it and then going through the very long recovery from surgery, I have felt that God has allowed this is my life for a purpose and I want to use my experiences to help someone else. The scripture that has been my encouragement through much of this is Romans 8:28a, "And we know that all things work together for good to those who love God," (NKJV). This verse inspired the name for this blog.

Don't be scared off though, this blog is not going to be a depressing and downer read about my complaints with chronic illness. While I will share my story, information, and resources applicable to my condition, I will not be only writing about this since my life is so much more than my condition. I look forward to sharing my thoughts on some other interests of mine such as marriage and parenting along with some fun things like fashion or baking thrown in.

I will be posting more soon, so I hope you come back by!