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!

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.

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!