I did. Yesterday I threw a temper tantrum. On the bathroom floor. At work. I have zero shame.

First of all, I can tell you that taking a toothache that has turned very quickly into a serious infection (that the dentist is talking to you about going to the ER to get IV antibiotics) & combining that with nerve pain in my foot from my Complex Regional Pain Syndrome (CRPS) is a nightmare combination.

I mean a nightmare with zero sleep.

The truth is that CRPS does a number on our bodies. The medicines, the injections we try, the procedures we go through, the consistent lack of sleep, are all hard on our bodies.

Yesterday I totally posted about my temper tantrum complete with an image of a sweet girl throwing it down. I do believe that sometimes you absolutely need to let it all out; and then pick yourself back up!

I am also a big believer in sending out the vibes you want in your life.

So….yesterday I did complain; I vented. Now today, I need to go back to sending out the positive frequency that I prefer in life. When I got the e-mail yesterday that my permanent DRG Stimulator surgery was not until the end of October I did feel my heart break a little. In my battle of this disease, I have felt hopeless many times. I would have that talk with myself often that I needed to accept it. However, in those five days of my trial, I found this small little glimmer of light.

That little light was hope. Just a little hope is all you need to keep yourself fighting; to keep yourself from falling into a dark hole.

Now I have to wait three months. I could keep crying about it & make the next three months totally miserable.

Or I could do what this “K” has always done. Find the positives, focus on the positives & trust the journey.

There are a lot of things I can now get done in the next three months; I would really like to build some strength back up. There are projects I would like to finish….okay, or start…. around the house. Right after we moved in, I had my foot reconstruction surgery and well, we all know the rest of that story. So, boxes still sit there, closets that need organization, rooms that just need “my touch” in them.

However, we do all really enjoy the upside down laundry basket as a coffee table in the living room! We aren’t real fancy people, clearly….

This procedure will be just before my one year anniversary of my foot surgery; the day that ultimately changed my life in many ways. The mark of a year of more challenges than one can image.

But, it has been my mountain. Even when I physically was unable to walk, in many ways I was still putting one foot in front of the other; I was climbing my mountain. I never knew what was ahead or around the curve. There were times I fell but was blessed by having so many reach their hands out to me. There were so many times I became so exhausted that I wanted to simply let go & give up on getting to the top.

But that’s the thing about life. You never know what is ahead, around the corner or how many times you will get knocked down. But, if you just keep trying to move forward, one day you will look back & find that you climbed a mountain.

In everything, there is a reason. I may never understand this one or agree with it. But, I also know this is my story to tell & I know stories have the ability to help others. So, I will keep climbing & fight to get one foot in front of the other, with a smile of course, & there will come a day I will look back & see the beauty of every small movement forward.

Until Next Time~

It was five days before. Five. At this point, the bride still had no idea what she was going to wear.

In a panic, I ordered six dressings via Amazon Prime thinking I had just enough time. On Wednesday I would know what I was wearing. My original dress I bought would be done with alterations & my shipment of the rest to try on would arrive.

The true problem: I do not know the woman in the mirror.

I stood there trying on the dress I had bought from the bridal shop so many different times. I kept telling myself it was fine, but the shape of the woman in the mirror just kept catching my eye.

My only explanation was that, this was not the size I had thought I would be when I got married.

At the same time, one reason I was excited about planning the entire thing just five weeks out was because the pressure to lose weight was gone. I knew that my soon-to-be hubby loved me regardless of what I looked like & the fact is that he tells me so many times a day how beautiful he finds me.

I call it my “Gabapentin weight.” That woman standing in the mirror I know is me, but I look at her almost feeling a little lost, feeling like I am lost inside her.

In the past few months, I have heard a lot of judgment about people who are chronically ill; some thrown my way. In fact, not that long ago, I read that “overweight people are basically just lazy” in a Facebook conversation; that we just needed to get off our butts.

I vented  my frustrations about what dress I would wear to my guy who told me I could wear my big red sweatpants with my hair in a ponytail and he would find me beautiful. In fact, the day of our wedding when I was at the salon he texted me to tell me to not waste much time there as a ponytail and no makeup would be just perfect for him.

I began to realize that regardless of what I wore the outcome at the end of the day would still be the same.

We would be married. That was all that mattered. Our love. Our unconditional love for each other.

I have struggled with my body image for pretty much my entire life. I worked through so many of those issues four years ago. But now, I cannot seem to learn to love a body that causes me such great pain every day. I cannot seem to love the body that I wish I could jump out of.

I have been trying so hard for the past three months to try to lose some weight but as I continue on these prescription drugs, I cannot even seem to get the scale to stop moving up let alone for it to just stay still.

Learning to embrace my body is a struggle. Every day I work on this, every day I tell myself that some parts of this is just out of my control.

I need to learn to look in the mirror & see that the woman I am looking at is strong, she might be sick but she is wearing a smile for all of those around her, she is sporting her dark under eye circles from so many sleepless, painful hours each night but she is still up and fighting every day & loving those around her.

I wore the original dress the day I got married to my true love. I describe the day as “perfect” when anyone asks. Because it was.

Now, this is me, trying to learn how to embrace the mess I really am; this is me learning to accept my body just the way it is.

This is me sharing my story to maybe open up the eyes of those who claim overweight people are just lazy. When you look at someone, you truly have no idea what they are fighting, the war they might be in every single day.

Yes, I have gained back every pound I have ever lost. I’m here working through accepting that as I write this post. In fact, saying it here just made a world of difference.

I am going to continue to try to find a balance; try to keep seeing if I can lose & return to a healthier weight range but for now…

This is me. I am a mess. I am living with a disease that most people cannot even comprehend what my body goes through daily. I am overweight. I am taking prescription meds that I hate that cause their own set of problems.

And….I am going to work on loving all of this mess & embracing who I am now; today.

Until Next Time~

I have played or coached sports pretty much all my life except for maybe the first five years of my life so when I am faced with a challenge, sports analogies come to mind quickly.

This time, she took the air right out of my lungs. I did not see it coming.

My younger daughter, my Bear, has struggled with medical issues for essentially all of her 9.5 years of life. We are on this never-ending roller coaster ride where some days we are cruising along & then we seem to be stuck upside down for days, weeks, months at a time.

Currently, we are once again flipped upside down & in daily communications with her team of doctors in Ohio. This weekend we had to take a lot of extra steps per her doctors to get her body to get functioning a bit more normal….or at least, HER normal. She & I spent the day Sunday working on it & there were many signs that pointed us to how much her body does not function the way it should or even close.

My daughter reminds me often of how you never really know what is hiding behind someone’s smile. Most people that know my daughter comment on her smile that is always on her face, her upbeat personality & her positive attitude. The girl just shines. You would never look at her extremely athletic & healthy looking body attached to the big smile & believe that behind the scenes, she is fighting that body daily.

As I tucked her into bed last night, she looked at me & with the biggest & scared eyes & asked, “mom, what is wrong with my body that it won’t ever work right? It’s never going to, is it?”

And cue the mom tears…..

I never saw this coming but her frustrations & her fear were growing. To be honest, I was feeling the same way.

Caught off guard I asked her if she knew what a grand slam was; she did not understand the difference between just a homerun & a grand slam so we talked about the difference for a second.

“Well, Bear, we just have not hit our grand slam yet. But, we cannot quit now because if we quit walking up to the plate to try we will never find the right pitch to hit our grand slam. We just have to keep stepping up & trying until we do.”

We hugged for minutes, both with tears, but I smiled big when I heard her cute voice respond.

“I’ll keep swinging mom.”

Until Next Time~

I laid there on the bathroom floor in a pile of sweat, a pond of tears, the room was spinning and my stomach so nauseous and all I could wonder was how long this would last. I screamed out for it to just end.

This was me in a detox. It lasted days, but this was that moment where I almost gave in & said “forget it” and took another pill. I had been instructed to stop taking it cold turkey for a few days to see if that was causing the hives that were covering my body. It was an anti-depressant prescribed in hopes that it would work by helping to reduce some of the pain signals to my brain.

I stayed off the drug, not because it made a difference on my hives, but because I found my mood to slightly improve. It was bringing me down, even more than living with CRPS was.

This is not a moment I share, laying on the bathroom floor already feeling addicted to a pill. Like anyone with an illness that is supposedly “invisible” we hide so much.

Yes, I share some parts because I believe in the power of a story but also because it helps me. But, there is so much that I am not saying; so much that is hidden. That is how we live our life with these illnesses.

We do not say things as we already feel like a burden to those that love us; we stay quiet because we do not always want to be the downer in the room. We stay hush because of the embarrassment, we stay hidden in the dark because some things are just difficult to share.

What am I not sharing?

I am not telling you about the number of nights I have sat in my bathroom in the middle of the night crying hysterically just begging the pain to stop. I am not telling you that I wake up in the middle of the night drenched in sweat as my body temperature is something out of control these days. I am not telling you about the times I have thrown things across my room in a fit of anger. I am not telling you about the nights I have gotten sick due to the pain. I am not telling you about the incredibly dark hole I have buried myself in not wanting to ever come out. I am not sharing the hives that are covering me from head to toe daily.

I am not sharing about the horrible side effects I experience from my prescription drugs. The bloody nose I wake up dealing with every morning. The dizziness. The total mental fog or the horrible memory I suddenly have. The sinus/cold symptoms I have had for months that never go away. The constant sick to my stomach feeling that just never leaves.

I am not sharing about the reflux I suddenly have and whether that is a symptom of my CRPS or the prescription drugs we cannot say. I’m not telling you about how my insides are just a complete mess….like total. You know, the totally unglamorous crap. Everything from my head to my bowels is not normal. Again, these symptoms could be from CRPS or my meds. I mean, really…this is the stuff I won’t share with anyone. In fact, sometimes I feel too awkward to discuss it with my doctors.

I am not sharing the pain it takes to walk “normal.” I am only sharing the victory of being on my feet! Learning to walk without showing pain is a massive victory.

I am not sharing how much I will fight daily to power through cleaning the kitchen or making meals or doing the laundry because my heart hurts when I do not power through. You choose between the physical pain of doing too much & the emotional pain of feeling as if you are never doing enough. I hide the strength of my pain so my daughters do not see it, so they do not feel guilty about needing me.

I am really trying to hide the truth of my weight. Between being off my feet for so long combined with a prescription drug that causes rapid weight gain the number of pounds overweight I am is something I am not saying. I mean, who in the heck ever wants to admit that here she is once again back close to her highest weight ever with 50 pounds to lose. No one…because that is something with a stigma attached to it. Since November I have gained over 30 pounds. I look in the mirror and want to cry. I want to throw something at the mirror daily to break it. That I’m not saying to you simply because I do not want to draw attention to it. I am not saying it because then I will have to face the woman in the mirror, the overweight one.

There is so much we do not say with these “invisible illnesses.” There is so much we do not want to admit because of the embarrassment or the stigma associated with it or maybe even the fact that your worth seems to be attached to what you can do or how “super mom” you appear to others. If we just stay quiet and smile and reply with our normal “fine” answers when others ask how we are doing, then we do not have to share our truth.

Because even when you think we are sharing all about our journey, in fact we are hiding the majority of it. We hide for those we love, we hide to protect ourselves, and we hide so we can pretend that we are completely fine sometimes.

Personally, after talking with some friends who suffer not from CRPS, but other “invisible illnesses” recently about this, I have decided to come here today and share with you what I’m not saying on a daily basis so that others, so many others, know that they are not alone. So that maybe I can help them fight through the fear of sharing. So that others know I am here to be their person that they can share it all with and who will listen & understand but remind them to fight that damn monster daily to keep living a life with positivity.

So, what you will continue to hear me say, is that I live life with a continuous yet spontaneous pain. I live life with what has been termed the “suicide disease.” I live life with what medical professionals would like to refer to as a “useless limb.”

But, this little space on the internet will show you the true ups and downs of fighting back, of fighting to live my life in the best way I can in spite of the invisible monster that tries to take over my body; I have decided to not let the monster take me down a dark road & that I will choose the right path for me.

Until Next Time~