When I read what I had wrote, tears stung my eyes. I could read what I had written, but I knew what was between the lines; what I was not saying.

This post is a little late this year, but the thoughts have been running in my mind for weeks.

All I wanted a year ago on my birthday was to learn how to thrive with CRPS; at the time I was barely surviving laying in bed just waiting and fearing tomorrow.

This weekend my hubby and I picked a random trail up north because my wish was for sunshine, fresh air & movement.

I have never been a fan of winter. Sure, when there is a fresh snowfall & I’m at home with no place to drive, you might catch me saying that it’s pretty outside; but even that is a stretch.

There is no color in winter; seems dull, boring & nothing has life.

As I walked on the trail covered in leaves, I felt the brisk wind from the bare trees on my face combined with the sunshine as I looked all around taking in every detail of nature.

As we approached the lakeshore at one point, I glanced through the empty branches of trees & could see the gorgeous blue water peeking through. I stopped to take in the view realizing that if it was the “pretty” time of year, I would not be able to see the water. The beautiful blue would have been covered by the full branches of green leaves.

Then I realized how much this related to life. I had a season for a few years. It was kind of ugly.

Every season has it’s own purpose. Perhaps when you are stripped down with empty & bare branches, that is when you can let yourself unravel, this is when you can see because nothing is hidden, you can dig deep & figure out who you are, what you want & how to live again.

I walked over two miles that day smiling. Did I feel CRPS, yes I did. But, I was in awe of nature, in awe of my own life & how content I am with every part of it; even CRPS.

CRPS has taught me more about life in three years than any other life event has taught me so far.

On my 39th birthday post, I said I wanted to figure out how to be a CRPS thriver & well, as I walked with a smile similar to a kid on Christmas morning I realized I was there. I am completely aware that there will be more hills to climb ahead, some I will be distracted and will not see coming but I do not worry about tomorrow. I am here. In this moment. Looking around in awe. Blessed. Beyond grateful for every day I am able to get up out of bed and that is something I will never lose sight of.

So, here we go 40s. I cannot wait to see what I might write about next year. I hope it looks a lot like this random shot my husband captured.

Until Next Time~

I have had a lot of questions every day about how my DRG Stimulator is working. I know I have not talked about it all that much. Partly because I am focusing on so much more than a stimulator.

Can I just say what a beautiful day today is? Today, I am so grateful for the ability to walk. Back after my initial foot reconstruction surgery due to bad foot genes in 2017, I went six months without the ability to walk. I utilized my knee walker or crutches. There were just two days in that time frame that I walked (slowly & very awkwardly) before the wound clinic wanted me back off my foot in hopes to heal the wound on my heel. Initially, I was only to be off my foot for about four weeks. The length of that time was due to my CRPS and it was believed there was a chance I would not be able to walk without assistance again. It is very common with CRPS. These are pages in my chapter that I will never forget.

Today, I spent my lunch break on the treadmill at the gym at a very slow pace, and I was able to put one foot in front of the other for two miles. Granted, my lungs still feel a bit hazy from pneumonia, but I just was very present in the moment truly appreciating each step taken & of the air in my lungs.

On Christmas morning when I was admitted into the hospital for five days, I could barely talk because my lungs were that bad. It took a few breathing treatments that day before I found I could really speak again. Struggling to breathe like that is a real wake-up call of another function our bodies do for us that we do not ever have to think about.

One major difference between me in the present compared to one year ago, is that my view on my pain is different, therefore I utilize the DRG Stimulator differently. A year ago when it was still turned on, I focused on it. At the very first second of pain, I was changing the stimulation.

Now, I rarely touch it. From my few months at therapy at a practice that is centered around mindfulness, I view my pain differently.

I used to resist my pain. I was angry at it. I was afraid of it. I hated it. It made me feel hopeless. It gave me anxiety. It made me depressed. I wanted it gone. I wanted to crawl into a dark hole and give up.

What has happened in the past few months is that I have learned to accept my pain. In the words of Lady Gaga on the Oprah podcast this week, I have learned to “radically accept” my pain. That’s important.

We are taught from so early in our lives that uncomfortable feelings are bad & our loved ones try to comfort us to take it away, make it feel better. In the moments of pain, it is incredibly uncomfortable, I would resist it & just want it to go away. Just like I have always wanted to bury or hide other uncomfortable emotions in life.

Now, I accept those moments. I practice different types of mindfulness {deep breathing or meditation are my main ones} to work through those spikes versus grabbing my remote from my DRG & cranking up the stimulation. More times than not, I am able to work through those uncomfortable moments & eventually, in time, they start to fade back down from their pain peak.

For the past few weeks, I have tried to take my sock off a little longer every day to see if I could learn to handle the air again. I wanted to see if I could ever work through that uncomfortable feeling, that spike of pain. I began to notice that some days I could go longer with no sock on but there were also days that it was too much.

Last night, I slept with no sock on. That might seem like such a silly thing to those who crawl into bed every night & take their socks off & never have had to stop to think about the air creating such excruciating pain on a limb of their body. For me, it is huge. I know that tonight, it might not work & maybe I won’t be able to for months again. But, I am going to choose to focus on the one night I did not have to wear one, instead of all the nights I put that dreaded big sock on my left foot.

In short, I am here really learning to appreciate the joys every single day. Yes, I do know there is a chance that the DRG could stop working or the battery could start to move again (last time it was about three months post-surgery that the issues began) or my CRPS could spread or whatever other crazy thing CRPS can do because it’s like the devil  but I am doing my best to celebrate the days things are improved instead of living in fear of what could happen tomorrow.

Truly, therapy was the best thing I have done for myself in a long time.  Because of that step, I am starting to find me again & I can see clearly now that I have allowed CRPS to bury me for far too long.

I know my life may never be “pain-free” again and I have accepted that. Please understand that accepting that is different than not being hopeful for a cure. There will always be moments where my CRPS will consume me and there will be moments where I will feel pain in my lower back from my battery {every single day} but I will continue to strive to be more and more mindful every day and focus on the present moments and the moments of joy.

Until Next Time~

I remember the first time I heard about it. I sat there in my head thinking “absolutely not. never. not me. not an option.”

Of course that was at the very beginning when I had zero clue at what any of this meant.

It was just a few days after being diagnosed. I was at my very first physical therapy appointment where it just happened that the patient in front of me also had this rare disease I was just learning about.

It was in her knee. She found out in that small space that I had just been diagnosed when she let me know the kind of hell I was about to experience. I knew up to that point in time, I had felt pain like I never could have imagined but I still believed I would be “cured” soon; even though there was no cure.

She went on to tell me about everything she had tried & that now she had a spinal cord stimulator in. I sat there with a confused look. A spinal cord stimulator? How does that help CRPS?

In my head, I thought there was absolutely no way I would ever try that. That seemed crazy & scary & who wanted that inside their body. Not for me.

Less than a year later, I went in for surgery.

Just over a year later, I went in for a revision.

Two weeks out, here I stand. I had my follow-up with my surgeon today & my incision has healed beautifully & my stitchers were removed. I am SO thankful that they were able to keep the battery in that same place & just anchor it down because that meant just one 3″ incision on my back instead of two incisions.

My rep from the manufacturer was there today as well. We reprogrammed my stimulator & today I was feeling more stimulation coverage on more area of my foot than we did the first time with the DRG. I am hopeful.

My binder belt is off, I no longer have to wear it but my restrictions are essentially the same for a bit longer before I can slowly begin to move more with listening to my body.

I can tell you that today my battery feels better than prior to surgery. I truly had so much back pain with the battery constantly flipping out & sideways. Now that it is staying put, despite a healing incision & the obvious soreness, my back has less pain!

Also, today while the nurse was going through the normal questions, like always, I had to rate my pain 1-10. I said, “2, which for me is like the best day, it’s like awesome.”

The DRG Stimulator is not a cure. It will not take away all my pain & that was never the promise or the thought. However, it’s hopeful that it will greatly reduce my daily pain & honestly I can live forever with a 2-3 on the pain scale living life big.

Today, I had a little pep in my step. After my appointment, I felt ready. I felt like this was an entirely new day one, a new chapter. I am so ready to continue on with my therapy & my stimulator & start working on a stronger, more positive Krisha.

I have every intention to find me again.

Until Next Time~

I was kicking and screaming. “No, I don’t want to go.” Tears were streaming down my face and the fear was heavy on my body.

This was me as I was being rolled off into the operating room.

It was only on the inside. Living in the inside of me was a terrified little girl, around the age of eight, who desperately did not want surgery again.

The adult me, on the outside, kept trying to work on my breathing; my homework from my therapist. Over and over I told myself everything was going to go smoothly and this would be worth it in the end.

Honestly, I did not want surgery. I’m tired of it all. The trial and error and the list of potential negatives weigh too heavy on me now. Healing & recovery are HARD.

To think just a few years ago, I was someone who only ever could see the positives. Negatives did not exist in my mind.

The plus for this surgery was because they knew where the leads needed to be in my back because it was a revision, I would not have to be woken up in the middle of surgery like a year ago. That is a moment I relive easily. So, I tried to convince myself that this surgery would be easier.

Eventually, it was time for my deep breaths under the face mask as they told me to dream of someplace beautiful.

Again, like every dose of anesthesia since two years ago, I dream of life pain-free. That place is incredibly beautiful and my smile there is so full of life.

I remember laying there with voices talking around me but I could not move or open my eyes. Eventually, I realized I was in recovery. As I fought to open my eyes, I tried to ask the nurses around me if the doctor was able to “fix it” but I was not able to get anything to come out. My throat, oh how it HURT!

They hit me with more pain meds through my IV and a minute later were panicking to get oxygen in my nose because like always, the meds crashed the oxygen levels in my body.

A few minutes later, the representative from my stimulator company came in and I was able to get a few words out to her that if she was coming to see me, it was good news.

She played with the programming of my stimulator to get it fired up while I was asking for anti-nausea meds because I was sure I was about to paint the room. The thought of getting sick made the burning in my throat intensify and I wondered what in the world went on inside the OR today.

Oxygen, rounds of pain meds and anti-nausea meds, eventually I was being wheeled away to my next stop, the one where my husband would be. Oh how I could not wait to see his face.

We spent hours in that room, way more than normal. I could not breathe, it hurt and felt extremely difficult to do so. They had to call the doctor to get a special and super strong medicine for my nausea. As it hit my body from my IV, my nose burned something fierce. Within a few minutes, I had crashed and slept for a few hours.

I remember laying there, half in and half out at times, unable to talk because it hurt so much but still feeling somewhat torn. The revision meant more surgeries down the road. If it had come out, I may never have had to enter an OR again. That eight year old girl inside of me began to throw a temper tantrum again.

This is life with a chronic illness.

But, I forced myself to take a few deep breaths and remembered what I had told myself for months. IF the DRG was going to work for me, the doctor would be able to revise it so I had to believe this was the case. That this time, a great pain relief was coming my way. In time, I will be able to get back parts of my life that I have been missing. Better yet, I can create a new life, one encompassing all I have learned living life with CRPS.

I reminded myself that I cannot fear the future. I have to stay here in the present moment. The present is all I actually have, it is all that is happening.

Allowing myself to look back or to look forward at endless possibilities often sends me into a dark place that every time you visit, it gets harder and harder to walk back out of.

In that moment, I took a few more deep breaths, repeated “peaceful” with each one and fell back into a deep sleep.

Until Next Time~

When my phone rang I thought to myself, “finally.”

I knew it was a phone number that correlated with the hospital.

However, when the person on the other end identified herself as my neurosurgeon & not the scheduler, my stomach dropped.

Because of this technology still being so new & the changes that have to be addressed on programming after surgery, a proctor from the manufacturing company is required at all surgeries. The one that was scheduled for me Friday can no longer be there due to a personal issue.

She assured me she spent all morning on the phone trying to see what they could do for me knowing I have been in so much pain & have already waited months for this day to come.

There was nothing that could be done.

I was simply told the earliest would be mid-November. But, really, she had no idea yet.

I hung up & ran into my bathroom at work & cried my eyes out.

I was finally ready mentally for this procedure. I had been working on that in therapy.

I have been off my medicine & all my vitamins/supplements for the two weeks in preparation which have made my CRPS symptoms flare up.

I have been just waiting. Waiting to get this damn battery out of my back that makes it hard for me to sit upright (just let me stand or lay down). I really, really hate my battery.

I was prepared for either outcome. Even though it scared me.

Now, I just wait. More. Which is what all chronic pain patients do.

We wait. We wait for meds or injections to start working. We wait to be seen again. We wait on insurance companies. We wait to see how our pain reacts. We just wait.

My surgeon is one out of two in Michigan who can do the DRG Stimulator & there is only one manufacturer for the DRG. I have no option but to wait.

So, I wait. I carry on without being able to take the med I was trying. I carry on without taking my vitamins or supplements that aren’t allowed before surgery. I carry on with however my body reacts to longer without.

I am not sure what lesson I am supposed to learn from this one. But, right now, I’m not interested in what that message is. I’m exhausted.

But, I know me. No matter how hard it has been at times, I just keep going. Even when my speed is slower than a turtle or the days I fall back down a hill for the tenth day in a row.

I keep going even though I am waiting.

Until Next Time~

I kept trying. Really, I did.

But that pit in my stomach. It was real. It was intense.

The long list of thoughts running through my mind. Fast.

I had my per-surgical appointment this afternoon with my neurosurgeon.

The other day I had to go for an x-ray for her to see the current status of my leads & battery prior to surgery. The report posted online pretty much said my back was a hot mess.

I drove there today feeling sick to my stomach.

Stay in the present moment, Krisha. Long, deep, slow breaths.

Nope, I think I’m going to get sick.

Let me just crawl inside my bed & curl up.

Yes, I am trying hard to stay in the present moment & not allow the anxiety & fear I have about my upcoming surgery eat me alive.

Not knowing what will come of my surgery makes me extremely anxious: do I wake up & find out the DRG was able to be revised & believe this time it will work. OR. do I wake up & find it could not be, scratch that off my list & go back to the drawing board. If I’m being honest, the drawing board is very empty as options are limited with CRPS.

Then, you have part of me at war with the other part: I’m hopeful, I really am….versus….why would you get your hopes up again? How many times have you been hopeful just to have the wind taken right out of you?

Inside my head is a constant war.

But, I am fighting that war as hard as I can.

Anyway, my neurosurgeon said I was pretty unique today. Are any of you surprised? Typically when leads move, they go backwards; however, mine actually moved forward. Always have to try my best to be a little different than everyone else, right?

So, for now, I am here fighting the war inside my head. Trying to remember what I have been working on in my therapy sessions. I am trying to truly believe that if the DRG is right for me, she will be able to revise it.

It’s just so much easier said than done.

Until Next Time~