Purpose

So I am one of those bloggers who pretty much abandoned her blog for a while. Why, you ask? Well, one reason is that I just got busy with life and raising three kids plus dealing with all the fun that chronic illness throws at me each day.
Honestly though, the main reason was I just couldn't figure out what the focus of my blog was. When I started, I wanted to get my story out there and write about my life with chronic illness. I wanted to bring awareness to the conditions. I wanted to share information I had learned. I wanted to give someone struggling with one of these conditions some hope. I wanted my blog to be a place for someone to find my story and feel less alone as they walked through theirs.
When I first found out I had Chiari Malformation 3 1/2 years ago, I searched endlessly online for other people's stories about having this condition. And the ones that I found helped me so much!

But, after blogging on and off for a while, I really began to question my purpose. I thought, maybe I shouldn't make my blog all about chronic illness. I mean who wants to read about that all the time? Is that too depressing? Should I bring more "fun" into my blog? Maybe sometimes I should try to be one of those "fun" bloggers. You know the ones who have those upbeat posts about the great books they read, fun crafts they made, great outfits they wore, awesome food they cooked. I love to read those!

While I truly knew my purpose when I started, I didn't have the confidence to stick to that. Confidence is always something I've struggled to have in my life. The negative things that play through my head tell me things like, "No one will want to read your blog." And, "Your story will not matter to any one." And, especially this one, "You're no good as a blogger." 

I didn't have the confidence to be the real me. To put myself out there. 

But, then I've gotten comments and emails from people saying that what I have written, my story,  helped them. 

I was so grateful to hear this! If I can truly help even just one person through this, then that will be my greatest accomplishment in sharing my story.  

Fast forward to a couple of weeks ago, when several things I read/listened to gave me a new revelation. A new outlook on what my purpose is as a person living with chronic illness and as a blogger. From this new outlook came a confidence that I hadn't had before. I believe that when you are clear on your purpose in something, the negative things begin to take a backseat to all the positive things you are hoping to do.
I have realized that my purpose truly is to do those very things that I started out wanting to do.
I want to reach out to others who are living with the same conditions as well as others whom are living with any physical illness.
I want to raise awareness for the conditions I struggle with because they are not well known, well understood, well researched.
I want to help everyone understand what life is like when you have "invisible illness" and how to relate to people with any illness whether visible or invisible. We all just need to be kind to one another! Every one has a burden they are carrying. Every one has a story. A kind word, a smile go such a long way in brightening the day of another person!
I am not supposed to be anyone else but me.
I need to be real about my life.
I need to share the good and the bad. 

God has allowed these physical conditions in my life and I know he wants me to use them to help others. And that is just what I hope to do!

I know this post was long but I wanted to share where I've been and what is on my heart with you.
Thank you for reading!

Blessings,
~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!