So much to think about. So much to consider. No promises. No guarantees. So many risks.

I just want to know what is the best I will ever feel again? How can I get there? What am I fighting for? Do I have a chance to ever find myself in remission? Will I ever get to a place where I live with pain only 1-3 on the pain scale?

Which direction do I go next? How do I know what way is the right way?

What if I choose wrong?

What if it makes me worse?

What if it spreads?

What if I end up with completely new problems?

Yes, the other part of me is saying, “but it could work. It could be right.”

But, the negative questions are heavier. I went into an operating room to have my foot reconstructed because I was unable to walk without pain & ended up with a disease of my nervous system that has no cure & is ranked as the highest type of chronic pain that exists. It is a pain that I would not wish on any person. It is a pain that is completely unimaginable.

Having something with no cure that has significantly changed your life is hard to navigate. You grieve. You grieve your old life; who you once were. She is gone.

You try all the things, all the meds, all the procedures that doctors tell you “might” help. Time after time, you get your hopes up. You pray. You stay positive. Until you realize, “it” didn’t work again.

You travel day in & day out staying as hopeful & as positive as you can be all while you are feeling it spread & cover more space.

You wish for things you once took completely for granted; that healthy people never think twice about but now would be huge wins for you.

You get dressed & wish you could stick your foot inside any shoe. Most days you find you have zero options as only your “safest” pair will work.

You want to crawl into bed without a sock on your foot. You want to take a shower without feeling like the water is fire.

You had dreamt about getting in a pool with your kids this summer or even being able to put your feet in the sand on a beach.

Right now, I am standing still afraid to take another step. I do not know which way to go. I am fearful of so many outcomes.

However, I also know, just standing here is only worsening my symptoms every day. Yesterday, I could barely get my shoe on first thing in the morning. Yesterday, I could not fully fulfill my volunteer duties for 45 elementary girls; something that fills my heart with joy which I need. Yesterday, I sat in my car for 20 minutes unable to stop crying.

I cried because of physical pain. I cried because of the way physical pain wears you down emotionally & mentally. I cried because I hate all the options. I cried because there is no real answer. I cried because I am stressed about making a choice.

I cried because this is hard.

Today, I still have no more answers than yesterday. Today, I am still fearful. Today, I am still in pain.

I wish there was a road where promises for relief were greater than what I am given. No one really knows. Treating CRPS is a mystery that is yet to be solved.

I am not sure what the next step will be once I am finally ready to move again. I know there is a chance that I will choose wrong. I know no matter what road I go down, it will be full of many struggles; I will have to walk through some hell.

All I can really do is stay hopeful that once I get passed the initial struggles, I might find some relief this time. Even just a little.

If not, I will be right back here. Again.

Until Next Time~

Yesterday I had a struggle of a day, I was an emotional mess! But, there was one part of my day that made me feel so much better even though the amount of strength it took was crazy.

No, it was not the thirty minute slow walk on my treadmill. I mean, that always takes some grit + determination and I did really want to curl up on the couch in my empty home last night and get lost in some TV shows.

I have this habit I try to do every day. Notice I said “try” because I’ll be the first to tell you I’m so far from perfect.

I prefer to do it every night because I spend the day taking in the world around me, then I complete my habit just before I lay down for the night and in turn, I lay my head on my pillow with a grateful heart.

Last night I wanted to skip it. What did I have to write? I was frustrated about hearing a surgical revision was the only recommendation. I was pissed that life with CRPS is so unpredictable and messy and hard. I felt horrible for the fact that once again, I’m going to become an inconvenience to those around me, to my family.

But, I sat down on my bed and realized I was stronger than that. I told myself I deserved better than that. I owed it to myself.

So, I pulled out my little notebook, grabbed a marker, wrote down the date and numbered 1 – 10 down the page.

I could have gone to bed mad at the world, mad at CRPS. Instead, I wrote out my list of the 10 things I was grateful for yesterday and that allowed me to lay down for sleep with a heart full of gratitude.

1. The strength to do this list
2. Tony bringing me a coffee
3. My parents love + support + encouragement (I had sent out a family text after my doc appt and they both let me know I was loved and not alone in this battle…. I cried.)
4. Laynee’s responsibility she showed today
5. Productive day at work
6. J feeling a little better tonight after the flu all day
7. 30 minute walk on the treadmill
8. The air fryer (helps dinner become easy!)
9. Great friends that love me big
10. My CRPS community online

Been awhile, I know. I have tried to write many times but cannot ever get the thoughts swimming around inside my head to turn into sentences.

Truth: I have been trying so dang hard to hide from the truth.

I kept trying to ignore it for a while. I kept telling myself it was not real. I tried so hard to convince myself and to believe that tomorrow will be better.

I finally had to admit my fear to my husband and eventually shared that with my bestie too.

Living with a disease that doctors cannot understand causes a lot of emotions. I could let fear take over my life very easily. I am absolutely fearful of what could happen with my CRPS and my body.

I try so hard to not allow the fear to win. I tell myself it is my choice to decide how I feel each day and I fight hard to choose to be positive and hopeful and optimistic and way stronger than CRPS.

The truth is that I’m wearing this back belt to try to keep my battery from moving to see if we can scar it into place but no progress has yet to be made. When I try to turn up my DRG Stimulator, I’m not getting any relief in my foot and instead am feeling the serious back pain / pull and a lot of stimulation shooting down my entire left side from my hip through my thigh.

But more than that, it has spread. My CRPS once was only felt in the middle part of my foot.

Now I feel the burning in my toes. I feel the burning on the bottom of my foot. I feel it in my heel. I feel it in every inch of my foot. But, it also runs all the way up through my ankle.

The added places of pain and swelling have changed the way I walk, the shoes I wear, the way I stand even.

After a very long week filled with nights of crying in pain and frustration my flare up is trying to beat me down.

But, I am going to remember it is my choice; I get to choose how my attitude will handle this journey ahead of me. I will not deny I have my moments where fear overtakes me and the tears and screams come flying out.

However, I am standing strong to choose to stand positive, to believe there are much better days ahead, to focus on how much I’m loved and how grateful I am for so much in my life. I will always believe I am stronger than CRPS and my determination will carry me through.

What do you choose to believe today?

Until Next Time~

I have always been one that has struggled with being insecure; feeling like I will never measure up. Lately, I have noticed how much I think of myself as being weak, probably because, weak is how I feel.

I am on day five. Day five of no DRG Stimulator & I shared with you last week that I was absolutely terrified about this week. I am going day in, day out, just being in survival mode. If you see me, chances are good that it will look like I have “resting b*itch face” but really, it’s just my pain face so do not take it personally! My hair is undone; a little makeup on my face; dressed in a sweatshirt.

For the big question that I have had asked many times this week: what is CRPS like without prescription meds? Am I still off of them?

The temptation to open the bottle is there, I will not for one second lie to you about that. But, I have not even picked up a bottle.  No touches.

As far as my pain, there is no difference between my CRPS pain when I was on my meds & now that I am not. However, I can tell an increase with some of my other symptoms {skin feeling like ants are crawling, body temperature, joint stiffness, muscle spasms, skin color}.

But, overall, for the first time in a year, I no longer feel like I am a walking zombie without a brain as I did while taking my meds. I completely agree that for some cases & some people, prescription meds are a must. My daughters are on some for various reasons. However, it was not the best road for me & I do not feel the outcome of taking them outweighed the risk of being on these meds long-term; possibly for life. The side effects I experienced were far too much.

I feared I was not strong enough for another battle this week. Yes, I found myself very weak at different times. The last few nights I literally would wake up screaming multiple times as it truly felt as if someone had stuck a knife in my foot. There were often tears before I found myself asleep again.

But, every morning I got out of bed & did what I needed to do. At times, I had to stop, close my eyes & breath deeply focusing on all the good stuff in my life. I became amazed at myself.

I realized this week how much stronger I am; how much more I understand about life. I found myself using various techniques to get through really difficult moments that I had been unaware of doing previously.

Sometimes feeling like you are just stuck in “survival mode” is okay; sometimes you learn more about yourself from being there than you expect.

One more day ahead of me before we can turn my stimulator back on; three more months of very tough restrictions in hopes my battery settles into my body; every day approached feeling very grateful for this life.

Until Next Time~

Today was the day I was waiting for. We all know that January feels like it already takes MONTHS to pass by as it is, but February 1st was the day in my mind.

Today marks thirteen weeks post-surgery from my DRG Stimulator. I was told at eleven weeks that I could start to move a smidgen more but not too much yet. At that point, I told myself that we would stay following my restrictions until February 1st. That was an extra week past the twelve I was given at surgery time.

However, it seems my time is not up yet.

As I have mentioned, my battery has been moving quite a bit lately. Last Friday while I was at my daughter’s gymnastics meet my battery was sticking out of my back an inch, described by my husband. That day I was in horrible pain sitting at her meet, riding in the car; eventually it moved again back to it’s more “flat” position.

At times, it’s laying like it should. You cannot really tell it is there except for the scar across the spot or unless you run your fingers along it. Other times, it sticks out & when it does my stimulator is not working correctly & my back is also in pain.

This morning I met with my surgeon’s PA as he was out with the flu & the rep from the manufacturer.

The assumption is that my battery has not yet scarred into place & perhaps my body is just going to take some extra time for the scar tissue to really build up around that battery. Obviously, when it moves, it affects the leads that circle my nerves being that they are plugged into the battery.

So, what’s next?

I have been advised to completely shut off the stimulator for one week. I am already really, really feeling my CRPS pain with it on & I will not deny how terrified I am of this. The point is to let everything settle back down & then go from there next week.

As for the battery right now, we wait & we hope. I have to extend my no lifting, bending, twisting, reaching restrictions for another three months in hopes by then the scar tissue is built up. I could be a super special case in which it could take up to a year. The biggest thing is to pray that when my battery moves it does not pull my leads too much. A battery revision surgery is a bit more simple, obviously, than having to have the leads placed again. But, either way, I do not want to even think of having any type of surgery quite yet. Mentally, I cannot handle that at this point in time.

I broke down. Tears were streaming down my face. Part of that emotion was frustration. When you are told twelve weeks & you are a week past that to then be told to redo that entire time period it is disappointing. Especially not really knowing if it will work!

But, more so, I think is fear. I am fearful of making it through this next week. I am fearful that I will end up back in the operating room way before I am ready. I am fearful that we may never get this stimulator to work just right & this was our last play in the play book until medical experts find something else & we never know when or if that will happen.

That is the scary part of CRPS. There is no cure. You have no idea what each day will bring you; you have no idea if you will even be able to tolerate a shower one morning to the next. You have no idea if or when it might spread; and if it does spread, how far? Does it end up consuming your entire body to the point your mobility is completely gone (yes, this happens)? Does it maybe go into remission?

As I type, my eyes are filling with tears again. In other words to me, writing is how I heal. This blog post might not mean much to you, but to me, it allowed me to express my fears & now I can walk forward working through whatever tomorrow may bring.

Until Next Time~