How do I say goodbye?

If you would have told me 15 years ago, that one of my small group church group kids would become one my dearest friends, I wouldn’t have believed you.  I met Olivia Kaiser (now Cataldo) when she was an angst filled 15 year old.  By the time I came on the scene, she had already lived through some very painful experiences and had no interest in being my friend.  Little did she know, I’m incredibly persistent and likable.  😉

My husband was the worship pastor for the music team and I volunteered to be the girls small group leader.  Our weekly meetings consisted of music practice then small group discussions about something Jesus related.  Our first evening together, I remember sharing my story and saying “I don’t expect you to share hard things if I can’t share hard things.”  And that was how our relationship started, genuine and honest from the start.  Jesse and I volunteered for a short time there but the relationships formed extended past the walls of that church.  

The following year, 3 of the 4 girls graduated high school.  Olivia texted me one day and asked me out for coffee to talk.  That coffee date changed the trajectory of both of our lives in ways we had no idea would occur.  She said, “Rachelle, I miss seeing you every week.  How can we become friends instead of you being the mentor and me being the mentee?”

“Well, I guess it would look like me sharing things with you that I normally reserved or held back.  But if you’re up for also listening to my stuff, we can make a friendship work!”  From then on, we talked about everything.  

Fast forward a bit, a worship pastor herself, she was wanting to go to a school of worship located in Colorado Springs.  She had fundraisers and bake sales and car washes to raise the funds to go.  The week before the deadline, she called me, so sad and discouraged, saying, “I can’t believe I’m not going!  I’m so confused and sad about this.  Not enough funds have come on.”  When we finished that phone call, Jesse and I sat down and reviewed our budget.  We learned that we had saved enough to make up the difference she needed in order to go.  So, that’s what we did...gave so she could pursue her dream.  I’ll never forget that phone call after meeting with her pastor at the time “WE GOT A HUGE DONATION LAST NIGHT!!!  I’m going to COLORADO!!!”  

Prior to her leaving, she and I met for coffee (are you seeing a pattern yet?) and we talked about how dating while in CO would be a distraction from the purpose to her being there.  We brainstormed things she could put in place to help her stay focused on her studies, as we both knew there would be plenty of attractive guys.

A few weeks later, we said our goodbyes and off she went to pursue her dream.  A few months go by and she tells me she’s seeing a boy.  “What?!  I thought you weren’t going to date while you were out there?!”

“I know!  It just sort of happened.  He’s really great though Rachelle.  You will love him!”

Fast forward a few more months, I’m sitting in my home office working.  I get a call from Olivia.  

“Hey Liv!  How are you doing?”

“Well, I need to talk to you about something and I’m a bit afraid of how you’re going to respond.”

I hesitantly reply, “Ok, I’m listening.”

She proceeds to tell me that she and Blake have decided to get engaged and will be getting married the next October.  I’d like to say I responded with such grace and love and care...that was not the case.  Instead, I chose a more memory filled response of “WHAT THE FUCK OLIVIA?!”  Not one of my better moments, even though we joke about this moment regularly now.  

We eventually got to meet Blake and his parents on Easter break and saw who this boy was who had gained her love and trust.  

The Summer before their wedding, I found out I was expecting our first born, David.  Olivia & Blake asked Jesse and I to sing Beautiful Things at their wedding.  Professional tip, don’t look at the bride when you’re singing and pregnant, you will not do the job you hoped you would.  

March 2011, David was born.  Most of my small group girls came to the hospital to meet and hold him.  Olivia was petrified of holding David thinking she would break him.  She did not break him, instead, she loved him so fiercely and hasn’t stopped even now ten years later.

The life we have lived together and shared is so immense.  It is impossible to write down everything spanning from hard conversations or words of advice or items of love dropped off at each other’s homes.  I am so thankful that I got to labor with you for the birth of every one of your kids (and literally contract with you with Eisley and Daniel...they are one week apart).  The hard conversations around faith and doctrine and love.  The scary realities of disease diagnosis and the treatment implications that still effect our worlds on a daily basis.  The tears shed over hard situations that no one should ever have to experience let alone keep having more and more hardships and more and more tears shed.  We have chosen to walk side by side through hell and back and continue to choose love to support each other in the best ways we know how, showing up and being present.

As I prepare to say goodbye to you and leave you behind in your new home in Colorado, I am so very sad but also so very thankful.  You have been one of my life’s greatest gifts.  Your love and friendship have kept me going on my darkest days.  So as hard as it is to not live daily life with you anymore, I know that this next journey will heal your exhausted, broken soul.  You have poured your heart out to others for so long, it’s your turn to be filled up and renewed.  I hope this time in the place that met your love, is exactly what you need to discover who you are again besides the person I know you to be: amazing, loving and caring.  I will miss you my dear, just keep swimming.  You are always and will forever be my soul sister.

A Little Too Much...

As most of you know, my health "journey" (I truly dislike that word) has been a bit tumultuous. Yet here I am again, preparing for an IVIG infusion next week to stop a flare up of my CIDP symptoms. Preparing for chemo like side effects. Preparing for pain, discomfort all to keep living. As the song says, "Sometimes it all gets a little too much".

While the world has been battling COVID-19, we've been in a very private battle in our home with one of our sons. It has been the most stress I have ever experienced thus far in my life. The lack of sleep, exhaustion, Dr's appointments and constant stress has finally caught up with my already fragile body and caused a flare up to occur. I have been doing the best I can to mitigate the stress through therapy, meditation, my current infusion med schedules etc., but the body can only handle so much.

Song lyrics have always been my jam. I memorize them, sing along and constantly interject them into conversations I'm having with songs I know (ask my friends, they know). This song just popped up on my playlist and it speaks to where I am today. Am I strong, YES. Am I tired of this constant fight, YES. Will I keep fighting to live, YES. Will I still have bad days and weep, YES.

I've been living through horrible illness for almost 9 years. Your health is a precious gift. Please do not take it for granted. For those of us who did everything right and still got horrible diseases. For those of us that have to fight like hell just to live another day with the people we love so dearly. Don't take it for granted.

My sister-in-law is currently going through chemo for breast cancer. When she called to tell me her diagnosis, I wept. I knew the road ahead for her and I wept. The 'Silver Lining' to having gone through what I have, is I can help those I love through it all with a little less fear, and a lot of love. This is now the 2nd time I have put together a "chemo kit" for someone I love. The second (if I count myself, the third) time I have helped shave a loved ones head when hair starts falling out from chemo. It is so very humbling, to be asked into those moments. It's an honor to help and also hard. I've said many times in this blog over the years, that perspective is a gift. Gaining that perspective though requires so very much pain. Simple things I have learned and am being reminded...love well, show up for your people when they need you, and don't take a moment of peace for granted because the next wave is coming.

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A Little Too Much - Shawn Mendes

"She would not show that she was afraid

But being and feeling alone was too much to face
Though everyone said that she was so strong
What they didn't know is that she could barely carry on

But she knew that she would be okay
So she didn't let it get in her way

Sometimes it all gets a little too much
But you gotta realize that soon the fog will clear up
And you don't have to be afraid, because we're all the same
And we know that sometimes it all gets a little too much

She would always tell herself she could do this
She would use no help it would be just fine
But when it got hard she would lose her focus
So take my hand and we'll be alright

And she knew that she would be okay
So she didn't let it get in her way

Sometimes it all gets a little too much
But you…"

4 Years...

I’d love to write that I’m off all meds again, but that’s not the case. I’ve been on some form of dmd (disease modifying drug) for the past 2 1/2 years.  

When I relapsed about 15 months post HSCT, I was devastated! I had been given a glimpse of health, of freedom from painful cramps and shocking nerves and infusions that made me so very sick and it was amazing! Since then, I have come to terms with my circumstances, that my life will be different because of the disease attacking and hiding inside me.

Life in the past year has been pretty good. My job is great and I love the people I work with. My boys are growing up, they are 5 and 8 now. My husband and I are still each other’s biggest fans. My family is supportive in so many ways.  My friends love me fiercely and show me regularly. And my health, is stable.

On Wednesday, I woke up in Maryland at 3:30 AM. I drove by myself this time to the airport when it was still dark very dark out. I flew out of Baltimore at 7:00 and arrived in Chicago at 8.  

My first appointment of the day was an EMG & NCV (my favorite...read with extreme sarcasm). My most favorite tech performed the EMG. Vinnie is a wonderful, gentle man who is great at his job. If you ever need an EMG, he’s your man. Next the neurologist came in and performed the NCV. If you’re not familiar with what an NCV is, imagine someone sticking a needle into your muscle and slightly electrocuting you through the needle while you have to make a muscle where the needle is sticking. It’s oh so pleasant. The neurologist reviewed all of my results from prior years to this years and my nerves are no worse than last years. Which in my case is great news. This means that the medicine I’m taking (Subcutaneous Immune Globulin) is keeping my disease progression at bay.  

Next was labs. Lots of blood taken. Lots of viles.

After that, I had some time before my next appointments so I hustled over to the LEGO store to see if they had a piece my son had broken last week. They were amazing and found the exact pieces he needed.  

I then met up with a fellow HSCT graduate also celebrating her 4 years. She had HSCT to treat Scleroderma and thankfully, her disease progression has been stopped!  

Next was meeting with Dr. Balabanov (the neurologist) who examined me and found that I had some reflexes back in my arms. That is a big deal y’all! A symptom from CIDP is the loss of all reflexes. So when a Dr. has tested my knees or elbows or wrists in the past, nothing ever happened. This time, my arms jumped (ever so slightly) but they jumped.  

Finally, I ended my day with Dr. Burt and Paula. Dr. Burt introduced himself to me "Hi, I’m Dr. Burt" and I replied "I’m pretty sure I know who you are by now."

He grinned at me and said, "Ha, right, I’ve been meeting lots of new folks today."

We chatted about the last year and my history. How I got shingles and it reactivated my CIDP, he said how sorry he was that I relapsed.

He examined me. He had me walk in a line, on my tippy toes, on my heels, stand with my eyes closed. He tested my strength and noted how very strong I was. I got a picture with him and that was it. Then Paula came in and we chatted about the forms we always have to fill out. She had me perform hand pressure strength tests. I was able to squeeze 76 lbs with my left hand and 83 lbs with my right! A far cry from what I could do 4 years ago. We talked about our kids for a bit, hugged and said goodbye.

I then was in a rat race to get to the airport in time to not miss my 5 o’clock flight home. I didn’t arrive at Midway until 4:10 and I hustled thru TSA as fast as I could. By the time I got thru, it was 4:30 and my flight was boarding. My gate was far away and I knew if I jogged a bit I could make it. So, I held onto my backpack straps and started jogging like a crazy person. People looked at me with crazy glances, some people jumped right in front of me as if I wasn’t even there.  But I made it and watched the sunset.

But here’s the thing, 4 years ago, I couldn’t have done that. I couldn’t jog to save my life let alone make a flight in a crowded airport. So, yes, I relapsed and it sucks. But, overall, I’m doing really well and my body is healing in lots of ways that I didn’t expect it to. I’d love for the tingling to go away, for the constant cramps to stop.  

I’m living my life the best way I know how despite having an incurable disease that could stop responding to my meds at any time.  

I’ve always tried to end these posts with some encouragement, something for you to take with you as you go about your life. Here’s what I continue to learn, that life is hard. We are all dealt different circumstances that we must overcome. Some of us get physically sick. Others of us get mentally sick. Some of us have financial hardships. Others lose their marriages or kids or jobs or pets or security or ‘you fill in the blank’. My point is that we all have things that impact us, that cause us to think "ugh, why me?!" But here’s the kicker, we are not alone in our suffering. Everyone suffers in their own ways. And while it’s easy to look at someone else’s hardships as nothing to be upset about, it’s still their hardship that is flattening them. So I ask, can we begin to change our mindset in how we view others? Can we begin to see the people behind the wheelchair, cane, tears, tantrums, kid at school having a hard time? At the end of it all, at the end of this thing we call life, what do we want to be remembered for? Our incessant need to be right all the time or have the nicest car or our unyielding love for others in showing up and choosing kindness when it’s hard.

This is not the life I thought I’d have. I thought it would look different. But, I can’t change it. These are my cards and I’m going to play the best I can with what I’ve got.  Just Keep Swimming.

Just Keep Swimming

As most of you know, this has been my mantra for a long, long time.  When you’re constantly faced with hard things, when hope is hard to find you must decide how to proceed.  Options are either: give in to the hard things and be defeated or find the gumption to fight.  I and my sister from another mister, chose the latter.

Tonight, my best friend since I was 10, and I went and got tattoos together.  We talked about doing this years ago after I relapsed with my CIDP and she was diagnosed with triple negative breast cancer; that at the end of her chemo we would celebrate with Just Keep Swimming tattoos.

So, we did just that.  I got a sea turtle tattood on my wrist.  The sea turtle has several meanings for me.  One, it’s the mascot for CIDP which basically means I might be slow but I will eventually get to my destination.  Two, sea turtles swim slowly but can cover a large distance, so Just Keep Swimming applies to them too.  Even though the journey may take awhile, not giving up is the key.

Learning to Walk in the Dark

From a young age, we are fearful of the dark. We are fearful of monsters under our beds, fearful of being outside after dark. We use all sorts of things to keep the darkness away: we have night lights in our bedrooms, flashlights for outside. This fear of the dark, somehow transfers into our hearts, into our minds. We begin to think that preventing any form of darkness is the goal, that any pain or loss should be avoided at all cost. While no one likes to experience pain or loss, we don’t live in a world without it and yet, no one seems to teach us how to not only walk in the dark times that we encounter but how to sit in the dark times when the darkness doesn’t go away.

Darkness, pain, illness are not new things for me. I have been sitting in the darkness for many years now. I am a professional darkness sitter.  

I remember many years ago, after I was diagnosed with CIDP, a friend at the time asking, "How are you still smiling? Things are awful right now and you are smiling…I don’t understand how." Well, I’m crazy! No, that was not my answer. My answer was this, this is an incredibly difficult time in my life, I have several choices in how I respond to this difficulty. I can give up and let this horrid disease kill me. I can whine and complain and be bitter about how life didn’t turn out the way I wanted it to. Or I can choose to find joy in the midst of a horrible illness.  

I am not sure who instilled that notion inside me, I’m going to have to assume that it’s the genetic grit that I inherited from both of my parents. They grew up in very different circumstances than I did: abuse, alcoholism, neglect were the things they dealt with as kids. A very far reality from my upbringing. Darkness is not a new concept to us.

I just finished reading a book about this topic. Barbara Brown Taylor wrote, "I think this may be a book about living with loss, which is tough enough in any place or time but is especially difficult in a culture that works so hard to look the other way." Again I ask, who is teaching us how to keep going when ‘shit hits the fan’?  

In her book, she asked some pointed questions that I know I asked years ago and continue to today when the darkness feels likes it’s going to envelop me.

-What can you learn about your fear of it by staying with it for a moment?

-Where can you feel the fear in your body?

-When have you felt that way before?

-What are you afraid is going to happen to you?

-What is your mind telling you to do about it?

-What stories do you tell yourself to keep your fear in place?

-What helps you stay conscious even when you are afraid?

-What have you learned in the dark that you could have never learned in the light?

Most people do not get very far into these questions before they want to stop. I fully get that. Facing the fears in your world is scary. Answering one question at a time and taking deep breaths will maybe get through the entire list at some point. Acceptance and peace comes after you’ve been able to stare your worst fears in the face and call them by name. 

There has been a lot of heartache in my world of friends in the past several months: death, suicide attempts, infidelity, divorce, major illness, marital strife, mental health issues with children…so much pain, exhaustion and hurt. It would be very easy to curl up into a big comfy blanket and stay there. But, I always come back to these thoughts when my world seems like it’s unraveling at the seems:

-sit (in the darkness) for awhile

-it’s ok to feel sad

-it’s ok to cry

-don’t give up just because it’s hard

-don’t give up just because it hurts

-life is still worth living

-love is still worth pursuing

-talk with someone about it

I am not sure why I needed to get these things out of my head and heart. I suppose I needed the reminder right now, maybe you needed a reminder too. Don’t try to be superman or superwoman and go at life alone, it’s too damn hard. Ask for help, it is humbling for sure, but the relationships you form will grow deeper than you can imagine.  

3 Years

It’s been 3 years since we came home from a life change. For those who weren’t around then, I’ll summarize the history.

2011 March: David was born. 

2011 December: I could barely walk.

2012 February: I was diagnosed with an extremely rare neurological disease called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) with no known cure.

2012-2015: I underwent various forms of treatment none of which cured me all of which made me feel horrible and more sick than ever.

2014 December: I decided to apply to a clinical trial in Chicago and was accepted!

2015 June: I underwent HSCT. Which involved high dose chemo and my own stem cells. Basically, we rebooted my immune system. I went into remission almost immediately.

2016 August: I developed a horrible case of shingles.

2016 December: we scheduled an emergency appointment in Chicago where I was diagnosed as having relapsed from the shingles. At that point I had difficulty walking, muscle weakness, my feet were completely numb, my legs felt like I was constantly being electrocuted and I had muscle cramps all over. We began treatment immediately. I’ve been back on dmds (disease modifying drugs) since December 2016.  

Summary of this weeks trip. I’ve improved since last year. Nerves are healing as I suspected.

We started out the day at the ridiculous hour of 4:00 AM. We flew out of Baltimore at 8:00. 

My first appointment of the day began at 10:30 with an EMG & NCV. This test is still as painful as ever and I hate having it done. The only good news from it was that the Dr. compared my results to last years and my nerves have significantly improved!

I asked about at what point do we decide which is worse for me the medicine I’m currently taking or doing HSCT again. Dr. Burt said, "we aren’t there yet, you’ll know, I’ll know and we will decide when that time comes".

So, we keep doing what we are doing, 8 needles a week, 200 ml of immune globulin injected into my stomach.

At some point, I’ll taper down my meds and see if I can take less...but I don’t see that happening soon.

My hand strength was good. I could squeeze 75-80 lbs. At my weakest, I could only squeeze 30 lbs.

I had to answer lots of questionnaires about how I’m doing. The only things I couldn’t answer yes to was walking long distances, standing for hours or running.

I met with a new neurologist today, Dr. Balabanov. He usually sees the MS patients but is now also seeing us CIDPers. He examined me. I have no reflexes still (a common side effect from CIDP). He tested my strength and feeling. Just like every other neurological exam I’ve had, he used a tuning fork on various points on my body and I had to tell him when I stopped feeling it buzz. This is the best I’ve ever done. He also took a needle and pin pricked various places on my body (all while my eyes are closed). I felt every single pin prick where in exams past, I often wouldn’t feel anything. All in all, I am doing well. Besides my lack of reflexes, I was exhibiting no visually physical symptoms of CIDP. That is huge y’all! HUGE!!!

Texting with a friend earlier she told me "I hate CIDP! But you are an inspiring warrior."

And to be completely honest, I also hate it.

But, as I told Paula (my nurse) I had to mourn the loss of it all...the life I thought I’d have but don’t, the things I can’t do that I wish I could, the time taken away from life and my family to do my medicine twice a week. Mental health is a big deal when you’re suffering from a chronic illness. I told my friend that there were lots of mental health questions I had to answer. Her response was encouraging:  

"...you’re journey to health has never been just physical. It’s a good perspective shifter. For me and everyone else.

Liiiiike she’s doing life on top of all the shitty chaos of a horrific disease."

So, with that, what I can control is only live in the now with what I know. And what I know is that despite having this awful disease, I am thankful for the perspective I have gained. That the little things that usually irritate aren’t that big of a deal in the scheme of things. We are making memories with our boys all the while knowing, my time is limited and we don’t know when the end date will be (do any of us though?). Being able to live life fully present is a gift I hope everyone gets to have without having to go through a tragic event like me.

Happy 3 Years to me. Now, I will eat cake.

Waiting for the good?

“...waiting around for our circumstances to deliver our expected life is a waste of energy.” Introduction to of Mess and Moxie by Jen Hatmaker.

I’ve been thinking this and saying things like it over this past year. Relapsing last year was a breaking of my heart.  

I LOVED:

-not being on medications

-feeling the best I’ve felt in 6 years

-having hope for my future.

The relapse took a lot out of me and my family. We (and many others) had sacrificed so much for my chance at remission. The hardest part in it all, is I had remission! I tasted it, felt it, experienced health and life again. For those of you who have your health, please, don’t take it for granted. I wish and hope for health again but I think I will likely have this muted version of it.

Reality:

Every 3-4 days I have the task of administering my medication. This process takes about 3 hours from start to finish. First, I have to clean my stomach with alcohol wipes. Second, I apply a lidocaine numbing cream to help with the pain from the needles I’ll be inserting. The cream takes about an hour to be absorbed into the skin. Usually during this hour, I’m finishing gathering my supplies I’ll need or prepping snacks and drinks for the kids so I don’t have to move too much later. Once my hour of waiting is up, I setup my work space. I like to set up everything at my kitchen table as it lets me have a large flat surface to accommodate all of the things I’ll need.  

First on my to do list, take Tylenol. You see, my body hates this medicine. If you’ll go back in time with me for a moment, you may recall a medicine I used to take called IVIG. This stuff wrecked me for a week every time I took it. Flu like symptoms, aseptic meningitis, no matter what pre-meds or post meds I took, the vomiting still happened, the fever still happened, the blocked bowels still happened. It was a living hell, every 3 weeks. Now, I’m taking a medicine called SCIG (subcutaneous immune globulin).  

Ok, so back to my setup. I lay out my drape cloth and begin to unpack my ziplock (that I prepared when my monthly shipment came in) of supplies: 2-60 ml syringes, 2-50 ml bottles of Hizentra (SCIG), 1 rate tubing, 1 infuse set with 6 needles, 1 red syringe cap, 2 transfer pins, several gauze pads, paper tape and 6 transparent infusion dressings.  

First, gloves on, then I have to prepare the line with the medicine. So I take my transfer pin, stab it into one of my bottles of medicine, then attach one of my syringes to the transfer pin. I slowly fill the syringe with the medicine all the while I’m thinking about how each bottle costs me $2,250, but I try to stay focused and not lose a drop. Then I attach the rate tubing to the infusion set then attach the now filled syringe to the rate tubing. I slowly fill the line with medicine and watch as each of the 6 tubes fill with medicine. I have to carefully watch each one as I don’t want any air in the line and I don’t want any medicine to sneak out at the end. Once the medicine is down the lines, I pick a spot to insert my first needle. I have to feel my stomach for hard spots to avoid as I have many from inserting needles all the time. I find a spot and stick in the needle, tape it down with paper tape and then cover it with the infusion dressing. I do this 5 more times. Once all my needles are in, I insert my syringe into my Freedom Pump and switch the pump to on. I still have one more syringe to fill before I can be done with this part, so I prepare the bottle, stick in the transfer pin, attach the syringe and again slowly fill the syringe with medicine and then attach a red cap to protect it.

Each syringe takes about an hour to be pushed into my stomach. So, I throw my trash away, grab my second syringe, get my water and make my way to the couch for a movie and a very careful cuddle while I get infused with the only thing keeping me walking. Every 3-4 days, for 3-4 hours I’m stuck (literally).

The process is painful physically as it leaves my skin very bloated, very tight and painful to touch. My boys usually look at me all hooked up and say either, “Are you sick mommy?” Or “I’m sorry you’re sick mommy.” They don’t understand how when they get sick, they take a medicine and it makes them better but yet mommy isn’t getting better and she’s always taking medicine. They try so hard to understand and many times I’m left saying, “Yes, I’m sick. It’s really confusing. It will make more sense when you’re older.” And then I wonder, will it really make more sense or are we just able to comprehend really sucky things better as adults?  

Which brings me back to the entire reason I started this entry, I can’t wait around hoping for a different version of my life. This is my life. All of the needles, all of the pain, all of the time. I have no choice in the matter if I want to live. The only thing I can control in this sucktastickness, is my response to it. I get to choose how this disease dictates my attitude, my beliefs, my hopes, my dreams, basically everything that it can’t physically touch. I’ve chosen to try to live a life as best I can with the reality of death on my doorstep, and I’ve discovered something very profound in the process. Life can be full here. Sweets can be sweeter, the sun can seem brighter, the air cleaner, people nicer...love deeper. And while I long for my health back, I do not long for the old me. I don’t miss the me who got caught up in what others thought all the time or the me who felt like I had to compete with other church wives to be the best or prettiest, or most thoughtful or most whatever. I don’t miss any of that. What I have gained is far greater than what I ever could have imagined. This ‘journey’ (which I hate calling it that) has brought a clearer perspective on what’s really important in life, and that is the only reason I will say I’m thankful for being sick, because being sick still sucks!

I prepared our Christmas cards while I was infusing and my lines kept getting in the way. For whatever the reason, I thought to take a photo. 

The juxtaposition of our happy, laughing family with my infusion tubes was a stark reminder that just because people look like they have it all together, doesn’t mean they really do. The things that aren’t represented in that photo are vast!  A few:

-my CIDP

-David’s ADHD

-Daniels crazy 3 year old tantrums 

-Jesses exhaustion from being on a deconstruction of self journey.

My point in this rabbit hole analogy, we need to stop judging each other by the little snippets we see. What lies beneath the surface, is far greater than we can know just by the few moments we see or the happy posts we read.

But you don't look sick!

This phrase.  These five words.  I hear, All The Time.  At a friends daughters birthday party, running into an old acquaintance, a client I haven't seen for awhile, my hairdresser, the list goes on.

The thing about CIDP (and many autoimmune diseases), is you can't really see the disease just by looking at me.  Under the surface, a war is raging between my nerves and my white blood cells; slowly eating away my feelings, my ability to function.  

Those that are close to me can see the slight changes.  The way I walk.  Lifting my legs is more like lifting cement with each step.  The constant inflammation in my body causes things to swell.  The nerve roots being exposed causes muscle spasms that can be anywhere from my toes to my eyes.  The nerves feel like I'm on fire, like I have bugs crawling inside my body and on my skin.

This invisible illness has no known cure at this point.  I'm left with taking medications derived from plasma donors to keep my ability to walk.  These medications are acting as a bandaid at this point.  At any time, it could stop working.  At any time, I could lose my ability to walk.  At any time.

Can you do another transplant?

Technically speaking, yes.  But it's not that simple.  A transplant would mean remission again.  It also means months away from my family in Chicago, chemo, hair loss, immune system reboot, lots and lots of drugs, a year of recovery, post medications, time lost where I can't work.  Money. Lots and lots of money.  

My current medication costs $18,000 per month.  That comes to $234,000 per year!  That's the cost.  That's what insurance pays.  They are billed $45,000 per month and only pay $18,000.  If they paid the billing price, that would equal $585,000 per year.  All of that to say, this medication is expensive.  I cannot live without it.  

Every week, I stick 6 needles into my stomach and inject $4,500 worth of medicine in hopes of going into remission.  I have yet to experience a day without symptoms.  

So, I'm in that place.  You know the one.  Where you feel like you're between a rock and a hard place.  While I'd love to be disease free again, it will come at a great price to the people in my world, again.  

Happy Friday.

2 Years

2 Year Follow Up Appointment:

Today we flew into Chicago for the day for my checkup.  Some have asked me, "why go when you've relapsed?"  Great question!  I go because when I agreed to do the transplant, I agreed to come back every year for five years so my data could be used in the clinical trial publication.  I go because I've relapsed and my story may help other CIDP HSCT recipients in the future.  I go because these Dr.'s saved my life once and will likely have an idea how to help me again.  By going, I keep the line of communication open for me to help them with the study and for them to help me thrive.

The day started early.  We woke at 5:00 in Baltimore and arrived in Chicago a little after 10:00.  We got a Lyft to the hospital for my first appointment at 11:30 (EMG & NCV).  These are those oh so fun procedures where they put needles in your muscles and test the nerves and then use an electrified wand along your nerves to test the velocity.  Super painful but the best way to look at the health of the nerves.  I don't know the final results of those yet but I do not my left leg was slower than the right.

Next, we headed to the 14th floor to see Dr. Burt and nurse Paula.  While waiting there, we ran into a fellow CIDPer who is applying for HSCT and was meeting the Dr.'s for his evaluation.  We chatted a bit and shared "war" stories.  A strange thing to meet a stranger and feel connected in a way because most people don't understand the pain you feel.  

When we met with Dr. Burt, he asked me a laundry list of questions: how have I been since Decembers relapse?  What has been my course of treatment? How am I feeling now?

He examined me.  Had me do some walking tests: walk on my tippy toes, walk heal to toe...these went much better than when I saw him in December.

I then asked, what's next for me?  Do I do a top off of a chemo drug (Rituxan) that kills the B cells in my body?  Do I do another transplant?  His thoughts are that he would be fine if I wanted to do the Rituxan but he thinks we should give the sub q a chance to put me back in remission.  He also said that if my CIDP were to start progressing rapidly, then a second transplant would definitely be the way to go.  So for now, we are going to stick with doing sub q, every week and pray that my body stops attacking itself.

During our time with him, we learned that there have been four of us CIDP folks that got a case of shingles and then began relapsing.  Three of us are back on IVIG and one miraculous person was able to avoid a relapse all together.  With that said, my relapse has had a purpose.  While I wish I hadn't relapsed, this new data is causing Dr. Burt to change the aftercare protocol for CIDP HSCT recipients.  They will now take the anti-viral, acyclovir, for 2-3 years post transplant instead of the 1 year I (and my fellow transplant friends) were prescribed.  

Next was a blood draw.  Only 10 vials this time.  😉

Then to end our day, we met with Dr. Allen.  We answered questionnaires about what are things I can and can't do...walking for long distances, run, turn a key, open a jar...so forth and so on.  Next I had to test my hand strength.  Thankfully, my hands have not been affected much and my strength remains strong at about 73lbs per hand.  Then we talked.  Dr. Allen told me how glad he was to see me doing better since I last saw him in December (December was a rough time people).  We discussed the long term issues with being on sub q ig and my risks.  

All in all, we ALL agree that doing sub q ig is the best course of action at this point.  

So, now we fly back home and get this new rhythm down of doing sub q every week.

I haven't posted much over the past few months.  Life has been busy and I honestly haven't had much good news to report, so I've remained silent online and confided in my closest people when the burden has been too overwhelming to bear.

IVIG Still Sucks!  It still makes me sick.  It still robs a week of my life every single time I receive it.  During my last IVIG, my 3 year old looked at the IV in my arm, kissed it and asked me if I was going to die.  Hard.  So hard.

My oldest, not sure of what to do to help, brought me an ice pack for my fever and a teddy bear to hold.

I know hard life circumstances don't break kids but I sure wish they didn't have to experience this.  Hell, I wish I didn't have to experience this, but here we are.

Sub Q IG:

The sub q injections have begun.  So far so good!  It's not a walk in the park in the least but the side effects are much more tolerable than the IVIG.  I basically stick myself with 6 small needles in my abdomen and then use a self regulating pump to inject 200 ml of immune globulin into my body.  The amount of fluid causes my belly to swell.  It reminds me of being about 3 months pregnant.  But, I'll take looking like I'm pregnant over migraines, vomiting and body aches like the flu any day.

One more silver lining in the "adventure" I've been on, I have gained a lot of insight into what cancer patients go through.  I've had chemo, I've had neupogen, my severe reactions to IVIG are just as bad as reactions from chemo (minus the hair loss and wasabi nose).  My bestest friend, has been fighting breast cancer for the past 6 months.  She's gone through it all: hair loss, fatigue, bone pain, nausea, bowel issues...you name it, it's happened.  But, when she texts me on a chemo week and tells me how horrible she feels, I get it, I know, I've lived it.  While our circumstances for all of these drugs are different, our experience is the same.  And I am thankful for being able to know what her heart is feeling as well as her body.

All of that to say, life is hard, we can choose to dwell in the muck, or we can try to find the silver lining in the midst of absolute chaos.  My life continues to dwell in the realm of chaos, but I don't want to live there.  I, like you, don't know when my time on earth will be done, but I do know, life is still worth living and people are still worth loving.  

What a Month

This month has been a whirlwind to say the least.  I'll hit the highlights then go into detail: we moved into our home, my best friend donated her hair in my honor and was diagnosed with breast cancer, I had an appointment with my new Dr. at Johns Hopkins, my husband went part time at work, and here we are, IVIG again.

Moving:

We had a great weekend of moving.  We rented a Uhaul truck for 2 days.  One day we moved all our things out of my parents house.  The next day, we moved all our things out of our large storage unit we had filled when we moved out of our town house.  We had so much help from family and friends.  From kid watching, moving refrigerator food, moving boxes and furniture, it was a fun moving day.  We are getting settled and enjoying our yard and room to play.

Hair Donation:

When I lost all my hair, Jenn wanted to shave her head with me.  At the time, her family was in the process of adopting again and would be meeting their new son in the months to follow.  As honored as I felt that she would go bald with me, we decided that her donating her hair was a better use of her awesome hair.  So, we made it a special date.  We went to her stylist, and then went out to dinner to celebrate.  At dinner, she told me that she had found a lump but wasn't worried about it.  That week she got into see the Dr. for an exam.

It's cancer.

Never words you want to hear from anyone you love.  My best friend since 3rd grade, has triple negative breast cancer.  A very aggressive form of cancer.  The team of Dr.'s acted quickly.  From the time of diagnosis to the time treatment started, was less than a month.  She is now the one undergoing chemo and all the side effects that go with it.  Silver linings: I kept my favorite chemo caps and wig, I was able to prepare her a little for what to expect, I know how she feels...what it feels like to have drugs in your body that make you feel like death.  She is strong.  She is Wonder Woman. I love her dearly and am sad for the road that she must travel.

Hopkins:

Northwestern helped me make an appointment with them back in December and the earliest I could get was late March.  I got a call around 3:00 pm from my new neurologists office asking if I could come in the next day at 9:00 am for a cancelled appointment.  I made childcare arrangements and took the appointment.  I wasn't prepared for being there from 8:30 until 3:00.  I met my new Dr. went over my history and he drew a timeline of my CIDP.  I was with him for an hour.  He asked if I could stay for testing (EMG, NCV and blood work).  I stayed and got all the testing done.  Before I left the testing room, the technician told me that the Dr. wanted to see me again before I left.  I go back to his office, and he calls me in with another CIDP Dr. from Europe.  He looked over my test results and wanted me to know that they looked nearly normal now.  That we caught the relapse quickly before damage had been done.  Good news!  He also said he wants me to continue my monthly IVIG (every 4 weeks instead of 3) for the next 3 months.  In May, I go back to see him and at that appointment, he hopes to switch me to sub q injections of immuno-globulin.  The side effects with sub q are much less than with IVIG.  I will just have to get used to giving myself 5-6 shots every 3-4 days.  So, here we go and continue on the CIDP management.  In June, I'll go back to Chicago for my yearly follow up.  While I know I'm not in remission, it's important for me to go and continue the study so Dr. Burt can use my data and figure out why the transplant didn't work for me.

Hubby Goes Part Time:

Last Fall, we were seeing the need for Jesse to be home more to help our boys.  What we've learned with my being sick, trauma happens, and it takes time to heal from it.  In order to qualify for our loan, we needed Jesse to stay full time, even though we can afford for him to be part time.  So, we had to wait until we closed before changing anything with his schedule.  He started going part time this week and it's been glorious.  It's freed me up to work more and for us to have more time together as a family.  Both of us working full time, on opposite schedules wasn't conducive to any sort of healthy home environment.  As good as this is for our family, there are some who might see this as Jesse being weak, not providing for his family...blah blah blah.  I will say this once, if you have that opinion you may go take a very long walk away from our family.  We don't want or need the negativity that some people have of stereotypical gender roles.  We are and will continue to keep our families safety and well being at the for front of our lives.  We have never been ones to take the gender roles we are "supposed" to have.  So, we march on.

Birthdays:

It's birthday season in our family.  Daniel just celebrated his 3rd birthday!  He's 3!!! Woah.  Next up is me then four days later is David then 4 weeks later is Jesse.  It's a crazy house on the late Winter early Spring.  Add everything else and it's just insane.

IVIG:

Yesterday, I had my IVIG treatment.  Same old same old.  Makes me feel awful.  So, here I sit, with my steroids, zofran & Tylenol, hoping that I can be a mom again when the boys come home tonight after dinner.

Just Keep Swimming

Where to start...

We went to Chicago on December 2nd and were told I had relapsed.  I was declining so quickly.  Everyday that went by I was losing more feeling, losing my stability and ability to walk, having more and more muscle cramps, eye twitches...and so on.  I was getting weaker by the hour, not able to lift either boys up.  In a matter of a week, from when we were in Chicago, we started my IVIG infusions again.  My old nurse Bello cleared his schedule for me and spent two days at my parents house administering my medicine.

An odd juxta position: to know the horribleness of what the infusions will do to me and wanting it so desperately to stop the damage that it was causing.  

Thankfully, the medicine started working very quickly.  By the third day post infusion, I noticed improvement in my legs.  By week one post, the numbness/pain/tingling had begun to recede down my feet.  By week two, it was down halfway on my right foot.  By week three, my left foot started showing signs of improvement.  Today, I can wiggle my toes again and I can feel the heels of my feet.  

I had another infusion on December 31st (Happy New Year), not so much fun when you are sick.  I'm in bed recovering still and will likely be very ill tomorrow.  But, it's helping.  I can feel the improvements and that makes the pain and discomfort worth it.

How are we?

I am past the initial heartache of it all.  It was a major loss that we all felt.  Seeing my dad so sad about me feeling sick, having IV lines hanging out of my body, it's something I've gotten so used to.  But as a parent, I can imagine how sad that must feel.  To see your child, sick...knowing there is absolutely nothing that you can do to help them...a helpless feeling.  

I told Jesse that if me being sick will keep everyone else healthy, then I'm fine with that.  I don't want to begin to think about anyone else in my world falling ill.  I know that I have absolutely no control over that, but it's a nice thought.

The boys have been handling it all pretty well.  They are enjoying mommy movie dates in bed and cuddles under the covers.  They are learning empathy and how to help when someone doesn't feel well.  Wonderful traits that their friends and future loves will reap the benefits of one day.

Did we buy the house?

Yes, yes we did.  It was not really ever a real question. It was more of a fear of the unknown.  We signed papers on the 30th and spoke with the sellers at length.  This isn't just any house.  They built it in 1976.  They lived there for 40 years!  They had their children there, their grandkids too.  There are memories of them everywhere.  Their first Christmas tree planted in the yard, the foot bridges that they built with their grandkids, the marks on the shelves in the garage showing how tall the kids had grown.  They showed us such generosity in leaving tools and yard equipment that they no longer needed.  Now we get to continue making memories there.  Start new traditions, add on to the foot bridges, plant our own first Christmas tree next year.  While I am hesitant to dream again, I know I must.  

I am a planner.  I like to know what's going to happen and what I can do to prepare for it.  With this disease, there is no opportunity for planning.  At any time, my body could go on strike and say, "Nope! That IVIG will not work anymore.  What else you gonna try?"  

As Dory encourages, I keep swimming, even when I feel like I'm drowning.  Feelings are useful tools but they are also very unreliable at times.  

IVIG Infusion

Yesterday and today I saw my old friend and nurse Bello.  He came to my parents home and spent the day giving me my infusion.  He didn't leave here last night until after 9:00.  I am thankful that I was able to get him again as my nurse.  I'm a rare case in how badly I react to the medicine and we have to have a very strict order of events.  The days before I drank nearly 100 ounces in water.  This is to ensure hydration and to prevent negative side effects.  The day of, he gets my line in, I take oral Tylenol, he gives me fluids via IV, then steroids via IV, then Benadryl via IV.  If you've ever had the pleasure of IV Benadryl, I'm sorry, it burns your veins like liquid fire when it goes in.  This is also when my body goes into a twilight sleep where I can't really move but I can still hear what's going on around me.  After all that, we start the IVIG.  Both days, we ran it at the slowest speed we could since it's been over 18 months since my last infusion.  After the IVIG is complete, we run another bag of saline to make sure I'm properly hydrated.

My dad came in at one point and looked at the line in my arm.  He gently hugged me and said, "I'm sad that you are having to do this again."  Me too dad, me too. 

My post medications this time consist of a steroid pack and anti-nausea meds.  The worst side effects will start showing up in a day or two so if we can stay on top of them, the better off I'll be.

I have never been too good about taking time for me, or downtime.  As a wife, mom and business owner, I am constantly going.  I enjoy the hustle and bustle of life so being forced to lay down for days on end is really difficult for me.  You see, I desperately want to live a normal/healthy life.  I had a taste of that for a little over a year and it was sublime.  There was no scheduling conflicts around my infusions, no lost work, no little boys being sad that mommy couldn't play.  Since I have tasted freedom and health, I long for remission like a dessert yearns for rain.  I desperately want to live a normal life free of IV lines and Benadryl comas.  I desire to run in our new yard kicking around a soccer ball, climbing trees and hiking the nearby trails.

Dr. Burt is hopeful that remission is possible again.  The course of action for now is we will infuse for one day, every 3 weeks.  I was able to only do 2 days and not 3 because I've lost 15 lbs since before the transplant!  Yay me and yay one less infusion day!  So, we march on, hoping this works and stops the progression.  Until then, I'll keep snuggling with these guys.