chronic illness

Putting Myself Back Together: My Journey To Becoming Whole Again With Chronic Illness

Putting Myself Back Together: My Journey To Becoming Whole Again

My apologies from being absent from . . . well . . . everywhere. Since my last trip to the hospital, I have struggled. I feel like I have been treading water just to stay afloat. I’ve wanted to move forward but found myself stuck in the same place.

I’m still really struggling health-wise. I’m still losing weight and not able to eat. My rheumatologist is really worried because I’ve lost a lot of muscle. My joints are ok for the time being but my muscles are in rough shape. I am starting back on Savella so hopefully that will help bring my pain down enough to at least being able to do some exercise to bring back some muscle tone. Fingers crossed that I will have as good of luck this time around on Savella as I did before.

I am also in the process of looking for a counselor to work on my anxiety. Before my last trip to the hospital, I lived in fear of another bowel obstruction but now I also worry about having a repeat performance. I got lucky last time with John coming in when he did but what if next time I’m not as lucky? I know that I can’t live like this. Its not good for me and its not good for my family.

I want to feel whole again so instead of focusing on just my physical health, I want to work on my holistic health. Body, mind, and spirit. I am going back to setting goals like we did for Sharing Our Spoons and sharing them monthly. I would love to have some of you join me and we can walk this journey together!

Thank you so much for all of your continued support and encouragement. It means more than words can explain!

chronic illness

No Dreams of Sugar Plum Fairies: Chronic Illness, Anxiety, And Insomnia

We all know that the holidays can be stressful (especially with chronic illness). Traveling, baking, shopping, and crazy family can take regular stress and anxiety up to an 11 for a healthy person. Add it all it on top of illness and it becomes a whole new brand of crazy. The message of Christmas is not the same was what the media and marketing would like us to believe but the exact opposite. The message of Christmas is peace, not busyness. It is a message of hope, not stress. It is so easy to get mixed up in the craziness and mess out on the message, meaning, and purpose of the gift that was given to us in the form of a Savior.

Why am I talking about Christmas in February?  Because it was during this season, instead of being filled with hope, I was filled with despair. Instead of breathing in the peace of the season, I felt like I couldn’t breathe at all.

Chronic Illness, Anxiety & Insomnia
What kicked off the chain of events I don’t know. I cannot think of any one thing that started it. I cannot think of anything that stressed me out beyond my max. Honestly, at the start, I don’t remember feeling stressed at all but, oh, how that would change.

For the last several years, I have struggled with getting enough sleeping (not only quantity but quality). Most anyone with chronic illness can probably agree with me that even when you are out of your mind tired and beyond exhausted that sleep can be hard to come by. It can be difficult to get comfortable enough to fall asleep. It can be difficult to stay asleep without pain waking you up. Sleep is supposed to be refreshing, rejuvenating, and healing but that isn’t always the case. Thankfully, up to this point, there were medications that helped overcome these hurdles.

I’m not sure what happened. The trouble started about a week before Christmas and with every night that passed, it become increasingly more difficult to fall asleep (even with treatment). I found myself spending most of the night staring at the ceiling instead of the back of my eyelids. I didn’t feel manic but it was like my body would just not shut off. It was like I was currently plugged in. At the beginning, I didn’t feel like the reason I couldn’t fall asleep was become my mind was racing. I know that feeling and this wasn’t it.

Anxiety has definitely been a struggle. It was always an on and off battle but after my bowel obstruction surgery, it became an ever increasing struggle. I am terrified, TERRIFIED of having another obstruction. We know that scar tissue is there and we know that it is causing a problem with pain and function of my GI system. Because of my obstruction history, I am considered too high risk to go in preemptively to remove it so I feel like we are just waiting for a repeat performance and that scares the heck out of me.

So while I have felt increasingly anxious, I did not feel like that was what was keeping me up at night. My mind was not saying, “I’m terrified of another obstruction or emergency surgery.” It was saying, “Why the heck aren’t I asleep?” At least that is what it was saying at the beginning.

By December 23 I wasn’t sleeping at all and I mean at all. Not that I just wasn’t getting quality sleep but I was literally not sleeping. My mind and body were just on constantly. I couldn’t even nap during the day. It was absolutely the most miserable feeling I have ever experienced.

With every night that passed, things began to shift. My anxiety became magnified and any hint of depression became a billboard. I was constantly on the verge of tears and I became hypersensitive to light, sound, and touch. It is impossible to enjoy the fun of Christmas with family when you feel like you are in a hole. It is impossible to embrace the peace of Christmas when it seems like you have lost the understanding of the concept. It is impossible to sing “O Holy Night” when your nights have become a living hell.

My body and my brain began to do crazy things. We know that the long term side effects of not getting enough sleep can increase your blood pressure, your risk of developing diabetes or other chronic health conditions, and memory loss to just name a few but the side effects of sleep deprivation are downright scary. Your cognitive function becomes impaired such memory loss inability to concentrate. You become more emotional, irritable, and unbalanced. Mentally, in addition to increased anxiety and depression, you can become flat out delusional. You can begin to hear and see things that aren’t really there. You can experience sleep paralysis (which you know if you have every experienced it, it can be terrifying).

Personally, I didn’t hear anything but by night 7 or 8, I felt like I was seeing shadows. Probably the most scary experience was one night towards the end of this awful experience and I was laying in bed one night with my eyes closed and I opened my eyes to see what I could only describe as the shape of a grim reaper above me. Again, I want to be 100% transparent in sharing my experience. It was terrifying. I began to scratch/cut myself on my arms and upper legs not to hurt myself but in attempts to find something to break the anxiety. Something to break the cycle. I was desperate. I would stare at the medicine cabinet and wonder how much I could take to knock me out without going too far. I know I was on the brink but thankfully I had enough insight left to recognize it.

My parents had taken Abby to the beach with them the day after Christmas so she was not here during most of this ordeal thankfully. John was obviously aware of what was going on but on December 30th, I disclosed everything. The scratches. The urges. He held me tight and the next morning, he called my doctor’s office (which of course had been closed during to this point during this ordeal because of Christmas – holidays are a bad time to lose your mind) and we headed to the emergency room.

In addition to the psychiatric rundown, they also did blood work to make sure there wasn’t something physically wrong, like a chemical imbalance or a vitamin deficiency, that could be the problem. After the initial rundown of questions, they gave me a small dose of medication which unfortunately lost its benefits as soon as they sent in the nurse who butchered my veins before finally successfully drawing blood. I hate having beyond crappy veins.

I was cleared physically and deemed not a threat to myself or others psychologically so I was sent home with a three day prescription to get through until my doctor’s office reopened after the new year. I can proudly say that I was not awake to see the ball drop and ring in 2015 because, hallelujah, I was sleeping. SLEEPING.

It was amazing how much of a difference just that one night made but recovery was definitely a process and the experience was definitely a wakeup call. When my doctor’s office reopened, she referred me to a psychiatrist. It was time to give myself and my family a better life by finally getting my anxiety under control. Whether or not, consciously my anxiety kicked off this chain of unfortunate events, I have allowed it to consume much of my life already. I accept the reality of my life with chronic illness and the fact that uncertainty is a part of the gig but I also want to accept that I don’t have to let that control my mind. I want to be able to exhale and embody the peace Christ has to offer. I want to be able to let go versus constantly carrying that weight around.

Today I had my first appointment with my psychiatrist and while the drive there nearly induced a panic attack (I hate driving in Charlotte) but it was definitely a great experience. She was very knowledgeable about endometriosis and chronic illness and in addition, recognized the depths of how it impacts every impact of your life. As crazy as it sounds, I have heard so many doctors, real doctors, blow off endometriosis, fibromyalgia, and other chronic illnesses as not a big deal or easily “cured” or handled. When she said, “people just do not understand the gravity of endometriosis, how it works, and the damage it causes and if they did, there would be more focus on finding the cause and how to treat it.” I could have kissed her. Then she stated how Lupron was an evil drug and never, ever be used. Can we give this woman a medal?  This is coming from a psychiatrist, not a gynecologist or women’s/pelvic health specialist. Maybe we should start giving awards to awesome medical professionals as a part of the Blogging for Endometriosis Awareness campaign.

In short, this experience was pure hell and I would never, ever wish it on my worst enemy but like all things in life, great and positive things can happened as a result if we allow them to. I am now working to make major steps to move forward and hopefully by sharing my story of chronic illness, anxiety, and insomnia, I will be able to help someone else do so as well. I will keep you informed on how my anxiety journey continues and how things go now that I am working with a psychiatrist (and we are adding a therapist to the team). I whole-heartedly believe that chronic illness is holistic and affects every aspect of your health (physically, mentally, emotionally, etc) and therefore I whole-heartedly believe that it should be treated holistically.

Do you battle anxiety (or depression) and have any remotely similar experience as a result of how your anxiety/depression manifests? What have been the things that have helped you the most get a grip on it?



Coming Up To Breathe: Rediscovering Grace

Coming Up To Breathe: Rediscovering Grace

It honestly does not even feel possible that we are into the second week of February. And its 2015. Where have I been?!

The holidays were a blur and I feel like I have been trying to play catch up ever since. While I will share more of the specific details tomorrow, it has by far been the most challenging period in my life and considering my journey the last ten years, I feel like that is saying a lot. The cherry on the depression cake was losing my Charlie last month. The depths of loneliness I have felt have shaken me to my core.

My saving grace has been my family and music. My husband has always been my rock and my Godsend but to say that he carried me through this rocky time would be an understatement. He kept me from losing hope when a part of me felt wasn’t sure that there was any left. He has had to carry things that no one should ever have to but the depths of his strength, faith, and love have sustained me in ways I cannot describe. I could never, ever put into words how much I thank God for giving me such an amazing man as my husband and best friend.

Of course I cannot leave out Abby. There are so many times that I have been blown away by her tender compassion, and quiet spirit. She is a wild and hilarious little girl but her spirit is so gentle. To know her is to see the embodiment of the childlike faith written about in Scripture. Of course as her parent, I could give you 48296263 reasons why I have the most amazing little girl on the planet but all that aside, there are times where I watch her and the immense care she has for others, I am stopped in my tracks and I feel like she has a greater understanding of faith, grace, and mercy than most (myself included). We read her school newsletter together a few weeks back and they shared about a little boy in her school who has diagnosed with cancer. The school was going to host a penny drive to support his family and without any hesitation (or prompting), Abby immediately went to her room and grabbed her piggy bank as she wanted to help.

I have shared many times how adoption has taught me so much about God’s love and grace and to know my daughter has saved me these last few months. God has worked through the heart and hands of this amazing five year old little girl to remind me that though my problems can often feel so big, I serve a God that is so much bigger and He has a plan, a purpose, and a love for me that surpasses all understanding.

In the midst of the chaos, there were times I felt like I was drowning but I finally feel like I have been able to come up for air. The last two weeks have been refreshing and a reawakening. Its as though a weight has been lifted and like I have been able to breathe fresh air for the first time in months. I went to church yesterday (for the first time in way longer than I wish to admit) and the pastor shared from Luke 8 about the Parable of the Sower. He shared how there are so many people along the path that have allowed things in life (such as anxiety, relationships, and even religion) to harden our hearts but how the love of Christ can soften and change our hearts and when the seed of the Word falls on a receptive heart, it flourishes.

We can flourish.

I can flourish.

All I have to do is drop my defenses, allow my heart to open, and God’s love will do the rest.

As a humorous aside- while the pastor was quoting “Jesus’s love can change hardened hearts,” all I could repeat in my head was “Jesus’s love can thaw a frozen heart” in the voice of Olaf. You know you’ve seen Frozen too many times when . . .

It was important for me to write this post not as a way garner sympathy or to put together some type of explanation or excuse for why the blog and social media have sat gathering dust the last weeks/months. It would be easy to write a post with an apology for absence with a promise to kick-off the new year with exciting new things and pretend like I have it all together. After all, the tagline says “tackling chronic illness with a fierce dose of hope” right?

As I sit in bed writing this, I have tears streaming down my face and a massive knot in the pit of my stomach as this may be one of the hardest things I have ever written.

One of the most important things for me in writing this blog has always been transparency. I want to be completely honest and completely real about life with chronic illness. The good, the bad, and the ugly. My life has been about as ugly as it gets.

But thankfully, my story doesn’t end here.

God has amazing things in store and that hope, even when I have felt like I had lost it, continues to be ever present. This last chapter of life may have been dark but the One who writes my days promises that the best is yet to come. He has more in store for me than I could have ever imagined for myself. Love and mercy are around every corner. This is just the beginning.

Last year, my goal was to be fierce but this year my goal is to be brave and being brave starts with being honest.

Being brave starts with putting myself aside.

Being brave starts with grace.

For those of you that are reading this and have stuck by me, I want to thank you for the depths of my heart for your support, your prayers, and your love and to say that the community of warriors I am blessed to be a part of has been keeping me fighting would be an understatement. There aren’t enough words to say it properly so I will just say it again, thank you.

I do hope that this post is a kick-off of exciting things to come and hope you will join me for the ride! God has amazing things ahead and the fire He has placed within my heart is eager to make 2015 a year like no other. Endometriosis Awareness Month is just around the corner and plans are underway for the 4th annual Blogging for Endometriosis Awareness campaign so I hope you will mark your calendars (and drop me an email if you want to jump in on the planning!).

As I mentioned in this post and in my Thank You Letter to Skillet, music has been a saving grace and one of my favorite lyrics has been, “This is how it feels when you take your life back, this is how it feels when you finally fight back. When life pushes me, I push harder. What doesn’t kill me, makes me stronger.”

How does it feel to take my life back? AMAZING.

Have you chosen a word for 2015?