Jan 17
2019

It’s Her

Some days it takes me two different tries to attempt to show up but I keep trying. I keep changing my clothes, I put on my shoes.

I keep doing it because I cannot stop dreaming about a healthier K. Yes, she may battle CRPS every day but she has a strength that is beyond her wildest imagination. She has a fighting spirit that just never quits.

It’s no secret that with the hell I went through for over the past year as well as my prescription drugs, I have a lot of weight I want to lose. Need to lose.

But, more than that, I am tired of feeling so weak every day.

This healthier K I can see in the future, she’s a dang warrior and I won’t stop until I find her.

Until Next Time~

Jan 10
2019

The Easy Way

I know what way is the easiest. In my eyes, I have two options; two roads to pick from.

Last week I made it down to my basement FOUR days for a workout. Now, when I say workout what I mean is a very light or easy walk on the treadmill at a speed so slow it takes me over 23 minutes to walk one mile.

But, damn, did that ever feel amazing! Prior to my DRG stimulator every single time I would try to start working out some again I would end up with a massive flare up the next day that would last several days. After realizing this cause and effect, I obviously gave up my hope for intentional movement.

So, to make it four days last week was a massive victory.

However, this week has been a struggle. I am still struggling with a massive headache every day that wakes me in the morning just pounding. This is believed to be at the fault of my prescription drug detox and my doctor tells me I may experience withdrawal symptoms for a bit yet due to the high dosage I was on for over a year.

After work this evening, I walked down to my basement with high hopes of walking a mile or even just 15 minutes.

I could not do it. My battery site was again experiencing great pain but also my foot was on fire. I tried to keep going until I just knew it was best to call it a day. Yes, my stimulator is working pretty well still however the thing with CRPS is that it is so sensitive and we can experience an increase in symptoms from random things.

Like the weather. Stress. Loud noise (sensory overload is a real thing). Lack of sleep. I have even found in the last few months that taking my vitamins was causing higher pain days. I’ve been too afraid to figure out which vitamin(s) were causing this because obviously that’s not something I want to experiment with!

Anyway, tonight I stopped the treadmill and sat down on the belt for a few minutes. I realized how easy it would have been to allow frustration to win. I have been sidelined from being able to be truly active for 2 years.

However, I have never been one to choose the easiest road.

Instead I just became grateful for the simple fact I could make it down the steps, that I had the motivation to put on workout clothes, that I had the energy to show up, and I was able to put on shoes.

There will be days that I cannot move. Days I cannot wear shoes. Days I am curled up in bed trying to hide my pain from everyone.

But, on those days I will also remember where I came from just a few months ago. I will remember the days the pain was so strong I would scream or become physically ill. Those days were one day right after another.

I do not look ahead to see how far I have to travel because when you have a disease like CRPS you never know what the next day will bring. My only goal is to try my best on the days that my body says “go for it.”

As for the days it tells me, “nope, not today,” I will choose to focus on the positives of how far I have come and to focus on the strength I have gained from all the days that made me feel weak.

No easy way out here.

Until Next Time~

Jan 4
2019

To Light.

Yesterday I posted a blog that was titled, “Dark.” It only seems right to share some light now.

As I am approaching eleven weeks post surgery for my DRG Stimulator I thought it was time to really talk about how this is going.

It has been a roller coaster ride, as I have shared previously.

What we have learned about my body is that my nerves seem to be super, super sensitive, so my response to the stimulator seems to be different than the majority of patients.

We discovered this when I met with the rep from the company & shared about how my body was feeling the stimulation from my lower back down to my toes & would suddenly kick up the intensity. We made some adjustments to the program again and added in shutting it off.

So basically, once a day I shut it off completely and give my nerves 15 minutes or so to settle all the way back down and then we start again. It seems to be working well, actually.

However, let’s focus on the light!

Getting out of bed is easier, taking a shower is easier! I still struggle walking down steps.

But I walk now. Like really. I do not limp.

I haven’t been able to handle going to bed without a sock on, but during the day I am able to wear more than like one pair of shoes!

My foot is often still swollen at the end of the day and still changes its colors from red to purple to blue to sometimes almost seeming transparent.

The part that brought me to tears was this morning. For the past few weeks I would get on my treadmill a couple times a week and try to walk. Often I would jump off after just a few minutes and have to stretch or change my stimulator. Every time battling to get back on. Some days I would have to call it a day after only a few minutes.

Today was my day though. I got on, at my slow pace of under 3 mph and could walk all the way until I hit 30 minutes.

Such a victory. From the woman who recently could hardly walk at all and definitely had a limp to the one who slowly put one foot in front of the other FOR THIRTY MINUTES.

I may not have traveled far and it was incredibly difficult but dang, I felt amazing when I was done.

I am hoping the light keeps getting brighter. Every improvement, no matter how little it may seem, means the world to me.

Until Next Time~

 

Jan 3
2019

Dark.

This is the page that is hard to write. This is part I wish I could skip. But, I have had so many people reach out to me, complete strangers especially, thanking me for being so bold which has helped them in their our journeys.

So, today I write about the dark season I have been in. The darkest days I have encountered.

The main decision in proceeding with my DRG Stimulator was the hope that I would, someday, be off of my prescription medicines.

It did not take too long of being on these medicines (on the maximum doses) to notice the changes in me. I literally felt like a zombie; I had no energy, no vibes even. There was nothing to me; my personality was gone. They literally made me feel dumb.

The simplest problems were incredibly difficult for me. Simple math or simple words. It was so hard to process information. As a mom, I really struggled to process mom life things.

I had to ask my husband for help anytime I had to think through anything. At one point, he even commented on how slow & confused I always seemed to be and how it worried him. I had to double-check, triple-check, everything I did at work. I once considered myself to have some bit of intelligence; that version of me was long gone.

We do not even have to mention or chat about the weight I have gained on my meds.

Just over a month ago I was tired of feeling this way. At the time we were just tweaking & searching for my magic spot with my stimulator but I woke up one day & realized I was done.

I was no longer willing to live life like this. Actually, I was not living.

I did a lot of research and talked with so many other CRPS warriors on the same meds. I decided it was time. I began to slowly reduce my daily dose.

A few weeks ago, I took my last prescription pill.

It took me a while to start to realize the withdrawal symptoms I was feeling.

I have had a headache since that day. I have felt sick; my stomach so uneasy. My head feels weird. I have not slept well most nights; I feel like my body is on the edge of an anxiety attack & cannot relax. My skin feels weird as if there are a million ants crawling on me.

The worse part was the scariest one that took me time to put it all together.

Dark. I mean dark.

I cried nonstop. I had scary thoughts. At times, I laid in bed in a pool of tears feeling as if I was such a burden to my family & life would be easier on them if they did not have to take care of me anymore.

They were just small thoughts that ran through my mind for only seconds at a time. But, they were there.

I finally put it together. My body, mentally & physically, was going through it’s withdrawal & every moment of it was hell.

It was scary.

I cannot tell you the number of times due to the way I was feeling & my CRPS pain that I almost reached for the bottle of pills. It is beyond anything you can even imagine unless you have walked through this.

Today, I sit here, feeling thankful that I have not touched those pills again & for the first time since 2017 I do not feel like I am a zombie moving around in a fog so heavy I cannot see an inch ahead.

I can imagine this decision is hard for some to understand. For me, it came down to deciding even if I have to live life with some pain every day, I can handle that better than the way I have felt. Pills were just not my answer.

I share this dark season to let others know when it is time for them to detox from their super high dose of prescriptions that it can get scary. Do not go it alone. I did not tell my husband what I was doing until I started to feel weak and scared. I should have told him before I began.

But, also I share because you never really know what someone is fighting behind closed doors. The compliment I have heard throughout my life the most has been about my positive mindset. Here, I shared that sometimes the one you think is the most positive can be hiding some really dark thoughts.

If you are in that spot, I am here for you. You are worthy & you are so incredibly strong.

It’s going uphill from here, my friends. I truly believe that.

Until Next Time~

Dec 18
2018

I Forget

It is true. Sometimes I forget.

I forget until I pull my pants off & they catch the corner.

How is that for a strange opening to a blog post? But, this is my life.

Sometimes I forget how my life is now. I forget how my body works. But, then, sometimes I remember when my pants catch on the corner of my battery pack that sits inside my lower back on my left side. It used to sit smoother inside but has since popped out.

I have become used to feeling pain that those moments where my pain ranges as low as the 1-2 range out of 10, I do not feel like myself. Those moments are abnormal to me.

I am ecstatic to say, but also a bit afraid to jinx myself, that after our fourth (I think??) reprogramming of my DRG stimulator on Friday, things have been feeling better.

Yesterday morning I woke up early before work and put in fifteen minutes on our treadmill. I could very easily joke about the slowness of my pace, but that is not why I am on it. Speed means nothing because all I want to do is move.

This morning I awoke hoping for a repeat. But, this time my body had to jump off at just barely seven minutes.

I cannot control my CRPS.

But, I can control my attitude, my outlook, my thoughts. Sure, there was a part of me frustrated that my body is not able to walk at a very slow pace for fifteen minutes.

Instead I reminded myself that, more importantly, I got a decent night of sleep (for a CRPS fighter our definition of a decent night of sleep is far different from a healthy person) and I was able to get up out of bed this morning & make it to the basement.

When you know where I have been, those two actions feel like I climbed a significantly steep hill & this morning I stood on the top with my arms in the air yelling, “I made it.” Today I do not even care that there is still a mountain behind this hill that I will need to climb; I’m going to stay in this moment. In today.

I smiled even as I turned the treadmill off, because for the past year there were many days where I did not believe I would ever be able to say either of those. I will admit that for so long I focused on what I could not do.

I had to change that mindframe so lately I have taken a really big step back from scrolling through social media. I found myself quite often saying, “I wish…” “Must be nice.” “You have no idea….”

I would watch fitness accounts complaining about time off due to a little muscle issue, I would see new moms worried more about when their six weeks would be up to workout again from giving birth, I would see people complain about how slow they could move or if they did not hit their max goal on their weights for a day.

I realized how my life has changed: my perspective, my goals & my body has changed looking at those accounts & went back in & unfollowed those that made me feel this negatively.

You never really can know the value of health until you know the value.

My body has changed. My health has changed.

Things that once mattered or seemed to be very important no longer are to me. Instead of scrolling through social media feeling the negativity in my mind build up, I will move forward every day with a heart filled with gratitude of the roads I have traveled & for any roads ahead.

Sometimes I forget. I forget my body has a battery inside & is controlled by an iPod. But, I will never forget where I have been or what I navigated through to get here today.

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Until Next Time~

Dec 14
2018

But What If?

When he first said it, it took my breath away. No one has ever said that to me in my entire life. I had to sit there with it, to think on it. He was right.

“It seems someone is living with her glass half empty instead of half-full lately.”

I have never denied or hid the fact that I grieve over who I was before pain took over my life and then since CRPS entered me. It’s hard to even remember, to even believe I am a marathoner, for example.

Lately, the emotions seem to be taking me down to half-empty.

But what if?

I have sat with this idea for the last week.

What if this is all happening FOR me and not TO me. Maybe there is so much for me to learn, to make me a better person, to give me a stronger voice, to allow me to help others.

I sit here now somewhere between Ohio and home in the passenger seat with tears in my eyes in pain. I find myself remembering the mom that could do this trip alone, that could handle any task without asking for help, the mom who was so strong.

I hate feeling weak. I think it’s one of the hardest things for me. But maybe this is happening for me to show me it’s okay, that you don’t always have to be the strong one who always holds it together. Maybe it is so I see there is strength in weakness. Perhaps I need to show that feeling your weakness and then picking yourself back up again, is in fact, strength.

I know that one of my weaknesses has always been asking for help. “A strong independent woman” was how I would once describe myself; perhaps “stubborn” could be added in there too. Now, I find myself daily asking everyone around me for help including help in public. For example, the grocery store where I am then judged because you cannot see my “invisible illness.” Yet, to me, it’s not invisible.

Today I reflected back on the past four years that my daughter has been a patient at the clinic in Ohio. In those years, she has gone through so much. As I was always there holding her hand I saw those moments where my positive girl seemed to go missing and replaced by one asking the hard, frustrating questions. “When will I be better?” “Why is my body like this?”

Although in those moments, I always found the right words to help her, I now truly GET IT. I understand that she just needed to vent, she needed to be mad for a minute. She needed to cry and scream.

Today I feel like I’m a better mom. No, not in the ways I once was. Not the energetic mom who could do ALL the things. But, a mom with a greater understanding of life and its struggles. A mom who may, at times, need their help, but one that is hopefully showing them so much more to life.

Patience, another one of my greatest weaknesses. My life has been put on hold in so many ways over the past twelve months plus. I have learned to be patient with those helping me, with doctors, with medicines, with surgical dates and surgical recoveries.

Now, I sit here with a stimulator in my body that hasn’t been working for the past four days. I await until tomorrow when we try new programming. Let me tell YOU about patience when it comes to this thing!

So maybe. Maybe this is, in fact, happening for me and not to me. Maybe, the Krisha that comes out on the other side of the CRPS fire is a brand new person with a view and an understanding of this life than I cannot even imagine today.

What if?

Dec 6
2018

The Dream.

I remember suddenly hearing my name, “Krisha, it’s time to wake up.” I knew it was an unfamiliar voice and in the moment, I had no idea where I was.

My eyes shot open and I saw a familiar scene. I could recall entering the operating room, being asked to get comfortable with the way they needed me to lay and then the rest was blank.

We were at the point where I needed to be awake so we could test the placement of my leads. It felt like forever, however I’m sure it probably was not, of trial and error. They would fire up the stimulator, I would tell them where I felt it, it would be shut off then as my surgeon would make his corrections with the leads.

Sometimes it felt like a giant cramp shooting down my left butt-cheek, others it would pull horribly at my lower back, I would feel it in my thigh and eventually we began to move them enough that I could feel it in my foot and my calf. Of course, once there we had to ensure it was hitting what I refer to as my “hot spot” because those are the spots where the fire from CRPS would burn the brightest.

Finally, my anethesologist told me it was time to go back to sleep so they could finish the leads and put the battery inside me. I was relieved, my body felt like it had been hit by a semi with all the trial and error with the stimulation.

As he was getting ready to send me back off to dreamland, he told me to think about vacation….that vacation I wanted to take. I laid there for a moment thinking about a true vacation and realized I did not have a “that vacation” to dream of.

Instead what I imagined as I fell back asleep was me moving. I was hiking with my family, I was at the beach without a sock, I was running a race.

I was smiling.

But it was not the “I’m fine” smile that always does it’s best to hide so much underneath.

It was a real smile. It was not an exhausted one, it was not one where pain was hidden behind.

Trust me, I do realize that one cannot understand the way that living in such intense pain can do to your life as a whole until you live it day in, day out.

When I woke back up in recovery, I saw my husband’s smile and his eyes filled with hope the same way mine were. I know, without him telling me, that he had been dreaming the same scenes as I had been.

My recovery from the DRG stimulator was a bit rough. I laid on my stomach or on my right side for two weeks with ice on my back for twenty minutes at a time. I had a staple that felt like it was pulling at my skin every time I moved. When my staples were removed, I could tell when she pulled that one out that it was “the one.”

I am now just a little over a month post-surgery and I am still dreaming. There are some days where the glimmer of hope seems to get lost in my eyes. There are days where I am back down at the bottom of the hill, looking up, feeling entirely too exhausted to begin again.

This part of recovery is tough. It’s an emotional and physical rollercoaster ride of hills. You can have days where you see those dreams coming true. But, then you have days where the pain flares back up briefing brighter than ever and your eyes lose the glimmer and those dreams seem as if they belong in a different lifetime.

Today I keep holding on to my dream. My dream to give my husband back a wife who isn’t sick and to give my daughters back a mom who is full of energy again instead of hurting too much to live life fully.

Tonight I may sleep with my sock on as the air causes too much pain, I may be standing back at the bottom of the hill and I might feel entirely too exhausted to start climbing again….

But with dreams in my heart, I will start and let the glimmer of hope shine bright.

Until Next Time~

Nov 25
2018

38.

I wanted to skip it. It was not about a number, that has never bothered me. I have always believed that each year was a gift. Then, my life changed. I changed.

It was about the fact that I feel like I just laid here for my 37th year letting the world pass me by. I spent three hundred sixty-five days waiting….waiting for something to help me feel better.

I spent more nights in my 37th year crying myself to sleep than the rest of my life. Some nights it was about pain, some nights it was the emotional toll CRPS had caused, some nights it was both.

I laid in bed as the clock struck midnight and it became November 25th with tears again falling into my pillow and when morning hit, I did not want to get out of bed. I did not want to start another year, I wanted to avoid it.

All week I have felt tired. But not the tired that a long nap or a good nights sleep fixed. It’s a tired that goes way deeper than that, a tired way beyond that. A tired many people cannot understand.

Yesterday I locked myself in my room because I realized how much I was not acting like me. I have been so moody lately, so quick to blow a fuse and start yelling. As our friends pulled into the driveway, I had to pep talk myself to put on my smile that I am so good at wearing.

We have yet to get the programming right on my DRG Stimulator and the pain, at times, is even more intense than before surgery. I know there is also so much going on internally with the many meds and changes in meds since surgery four weeks ago. Not to mention, the struggle emotionally and mentally that has clearly been a struggle.

I spent the week saying I wanted to skip my birthday, I did not want to get up this morning, but I reminded myself what I have for over a year and a reminder that came from a birthday gift from my bestie:

My day began with reminding myself that I’m so fortunate to experience my 38th day. I made a promise to myself that this year was going to be a year of great self-discovery, love, strength and growth that by the time 39 comes along, so much of this will be a distant memory I will only being able to recall from having shared my story here.

Until Next Time~

Nov 20
2018

Rocking.

I am sitting here, or, I have been sitting here for twenty minutes. I am on the edge of my bed, my “good” foot touching the floor while my CRPS foot dangles in the air. I’m rocking.

Back and forth.

The rocking is in line with my breathing, or that is the goal anyway.

You see, here I am again, tears running down my face.

I was laying in bed, ready to close my eyes when suddenly it felt like an electric shock flying through my body, I screamed as I went reaching for my iPod that controls my stimulator to turn it down. I had turned it up about twenty minutes before as the CRPS pain in my foot began burning brighter by the minute.

The crazy part was just about two hours prior I put my good vibes out into the universe posting this:

“Sure, today was a Monday. But, my realization that each day is a gift becomes stronger every day even if it’s one that’s a struggle. There are always so many things I can find to feel so grateful for.

Today I had my stimulator technology reprogrammed and while they were testing and flipping the leads, the pain across my back was absolutely crazy, like make me scream! They gave me 2 different programs to test over the next week before my follow-up with the surgeon. The programs usually take a few days to know if they will help so I’m hopeful that by Turkey day the program I’m on now will kick in and the day can be spent with lower pain!”

Now, I sit here full of fear. Tears are streaming down my face and all I keep saying out loud is “Please.”

Please work. Please stop hurting so bad. Please stop testing me. Please stop scaring me. Please let this help me. Please, please, because I’m just not that strong anymore.

These nights of laying in tears and praying for the pain to subside are getting long.

As I have now laid back down, I keep finding myself gazing out the window looking for that glimmer of light to remind myself to keep my focus there. No matter how dark it may seem, if we focus on the light regardless of how big or small it is, we can remain hopeful and strong.

I find myself going back to my mind that tries its best to focus on gratitude. Even here, in this moment, I can find something I’m grateful for to focus on.

What? In this very moment, I’m thankful for my husband sleeping next to me, for his snoring letting me know he fell back asleep after checking on me ten times. As much as I joke with him about snoring, or in fact put his side of our sleep number bed on “partner snore” setting in the middle of the night, I will listen to his snoring every single night for the rest of my life if that means he is at my side.

He brings out the best in me, his love keeps me strong.

So, now I will lay my head down and say my prayers in hopes for this pain to allow me to close my eyes to combat this exhaustion.

Until Next Time~

Nov 16
2018

Those Days….

I was going to post some picture this morning with some positive, inspiring quote. But, I realized that was fake.

If I had slapped some positive words up today, I would have been sharing a lie; it would not have been real. Who would that help? My intention here is to help others who face similar battles, to help someone who is beginning a journey that they have no idea what to expect & to let them know they are not alone.

Pretending that it is always sunshine & roses would be false. I want someone who is searching the internet for information on CRPS or the Dorsal Root Ganglion Stimulator to find me. I cannot tell you the number of times I have searched for other people’s stories.

Recovering from getting my permanent DRG stimulator in is like this:

A roller coaster ride where you cannot see ahead so you have no idea what to expect. You climb a hill, feeling good, only to find at the top that you are tumbling back down the hill hard & fast. Sometimes it feels like you are stuck, the wheels have stopped moving & there you sit in a dark place. Because you cannot see ahead so you have no idea how long the ride is but more terrifying than that is the fact you have no idea what is coming next.

I have hit that high hill feeling like a brand new woman & now I am stuck. My stimulator is no longer hitting my foot. When I increase the strength of the lead that covers my foot due to an increase in my CRPS symptoms, the stimulation is not hitting my foot at all & is instead hitting my calf. When I am sitting in certain ways or certain chairs, or laying down in certain positions, it is making the stimulation from my hip down to my calf very strong that I feel as if I am touching an electric fence but my finger is stuck & I cannot pull away.

Last night, I finally lost it. Because, yes, even those incredibly strong people you might know, they still breakdown. The pain in my foot made me sick to my stomach. I was trying so hard to hide behind the reality that it was not working right; I was trying to just show up strong & positive….until I came unraveled.

This entire process is hard. For the past year I have struggled with feeling like a burden but it has been multiplied so greatly. When you cannot bend down to pick up clothes from the floor, when you cannot twist your core at all, when you aren’t allowed to lift much of anything & cannot reach for anything above your chest…..I mean, you are pretty much helpless. Whether I am at home, at work, or at the grocery store even, I have to rely on others for everything. You feel like that annoying little pest. The lack of purpose, feeling like such a burden, overwhelmed with the unknowns, feeling helpless makes for really long days & these twelve weeks will feel like months & months. Especially when we still do not know if this is going to work.

So, for today, I am struggling with my positive words. Today I feel tired, I feel like the light inside is very dim. What I can tell you is that I have been here before; I have been through so many of these days where the battle feels so much larger than me. I have found days where I did demolish everything that came in my way; other days I found myself crawling on the ground wondering if I would ever make it out.

This week I have been slowly starting to fade into the background; wanting to be hidden so that no one would know how I was feeling.

Last night I sat in my room with tears falling down my face pleading that I was not strong enough for this fight anymore. I felt so weak, so done. I felt afraid; honestly so scared. “I’m not strong enough for this,” I heard myself say many times.

Today, I woke up. I woke up & got out of bed so that is a gift. As much as I still am feeling some of the same way I did last night, I also know how lucky I am to be upright.

Monday I will see the rep from the manufacturer of my stimulator to look at the programming settings. The fact that it is not working may not mean anything at all other than some needed reprogramming or it could mean something more.

So, this weekend I will continue on trying my best to stay in my state of gratitude, I will try my best to remind myself I’m not a burden, that even if I am not contributing much I am still of value. I will go back to practicing my breathing to fight through moments of great pain. I will carry on & somehow or another, I will believe that this will all be behind me someday…..because that is just who I am.

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{Again, I do not share this story for a needed pep talk. Trust me, I pep talk myself daily. I share for those out there that need to know they are not alone & that how they are feeling is okay & they will get through it. Make a list of ten things you are grateful for right now & see your mood start to shift.}

Until Next Time~