Ramblings and a Life Update

I'm way overdue in posting on here. Again.

I always have the best intentions. It seems that is a common issue in my life. I have the best intentions but I don't always follow through on them. I'm working on that! :)

So, I say to myself, "Okay, you are definitely going to post on your blog every week."  Then 3 weeks go by. 

Then I say, "Well, that's obviously not doable for you. So ok, no pressure. Just post monthly."

Then a few more weeks go by and before I know it, those weeks have turned into months.

The older I get, I feel like my life just keeps speeding up. The weeks go by as fast as a bullet train. Anyone else feel that way?

I think it is the pace of our world. It seems that everyone's lives are so busy. 

Filled with so much. 

With all of our amazing technology, one would think that it would make our lives so much easier, that we could all slow down in some ways.  But, we just seem to fill our lives with more and more.

Living with chronic illness has taught me so much about slowing down. Yes, some days the fatigue, weakness and pain force me to stop and rest. But I have also learned my own limits and I know that in order to avoid major flares, I must pace myself and not overdo every day. With having children, that doesn't always happen. Sometimes I overdo it because they need me. But for those things within my control, I try to not pack my days too full. That means I don't over schedule myself or my family. I do things at my own pace. For instance, I can no longer clean my house all in one day. Also, I can not be out running errands all day and then be able to cook dinner and enjoy time with my family in the evening. Sometimes the non essential things don't get done and that is okay!

By slowing down and not filling up our schedule, I have found that it is not only good for me but also for my children too. They are not over scheduled with involvement in too many extracurricular activities. They have time to enjoy being children. Even before I became ill, my husband and I decided that we would not allow our children to be involved in too many things. We did not want our children to grow up feeling pressured and overwhelmed and too busy to enjoy their childhoods.

We have been practicing the art of slowing down this summer for sure. We have been sleeping in, spending our days at the pool, watching movies, taking evening walks. Just enjoying summer and enjoying family time. My husband has been able to work his second job a bit less and has been able to spend time with us more. That's been wonderful!

Health wise, I have been feeling a bit better in some ways. My joint and overall body pain seems to always be better in warmer temperatures. I have been having more frequent headaches since the beginning of the year. After a visit with my neurosurgeon to review my recent MRI, he stated that the cerebrospinal fluid flow was adequate so there was nothing surgically that needed to happen. Thankfully! So, he referred me to a headache specialist.

I finally saw that doctor in May and he felt the I have three different types of headaches. I have Chiari headaches which cause pain in the back of my head and are more of a pressure type of pain. I also have migraines which are in the front of my head and cause sharp pain with sensitivity to light, sound and nausea. He also diagnosed me with Occipital Neuralgia. This is where the occipital nerve, which runs up both sides of the back of the skull, gets pinched and causes sharp shooting pain up the back of the head to behind the eye area. I was having this type of pain very frequently and it was awful. He placed me on preventative headache medicine in hopes that it would help prevent the migraines. It has worked really well! He also referred me to a pain management doctor for the occipital neuralgia. 

I had a nerve block done for the occipital neuralgia 2 weeks ago and it has worked so well. I'm also getting some trigger point injections to help with the chronic neck pain. These are working well also.

So that's what's up with me. I hope you enjoy a slower paced and relaxing summer!

Thanks for reading!

~ Sonya ~

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 

Playing Catch Up

Hello everyone! What a whirlwind of a month it has been! We have had so much going on this month that I have gotten a couple weeks behind in my "Five for Friday" posts. 

It has been a great month for us! We have had two huge answers to prayer, things that the Lord worked out for us that are such life changers for our family. 

One of these is a legal matter and I'm not at liberty to discuss the details of it. God worked this whole situation out in an amazing way that was far beyond what we could have ever imagined! He is so faithful and good to us! 

The second answer to prayer is that my husband got a promotion at work! He has worked so hard for the last several years to get extra education and develop himself as a leader. He has worked to bring positive change to the workplace when others were content to sit around and complain. His leadership skills amaze me! He has been in this promotion process for months and he worked so incredibly hard. Because of his hard work, he was in the #1 position throughout the entire promotion process! I feel honored and proud to be his wife! 

These two answers to prayer are making it possible for my husband to be home more with us which is huge for our family. For the last two years, he has been working 80-90 hours a week to keep our bills paid, since I was a unable to return to work after my brain surgery. It has been so hard on me to be functioning as a single mom for most of the week and dealing with my chronic illnesses too. It was really wearing on me! Our children were also missing their dad really bad and my husband was just getting so tired and burned out. We had been praying for so long that God would work it out for my hubby to be home more and God answered! He is good, all the time! 

Our scripture verse for the year is Isaiah 43:18-19, "Forget the former things; do not dwell on the past. See I am doing a new thing. Now it springs up; do you not perceive it."

Physically, I am status quo in the way that there have been no improvements in my chronic illnesses, but, thankfully, no worsening either. I still have good days and bad days. I'm anxiously awaiting some relief in my overall level of chronic pain as the weather warms up. Here in Ohio, all we have had is the occasional warm day with a lot more cold days. Its like we are being teased by these beautiful warm days and then getting stuck dealing with more cold the very next day. We actually had some snow flakes yesterday. I'm starting to wonder if somehow we got stuck in an "eternal winter" like on the "Frozen" movie. ;)

That's all I can think of to update for this week! I'm going to do my best to get back on track with my Friday posts next week. Until then, I pray you all have a blessed week!

Sonya

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.