Medical Issues, Opsoclonus Myoclonus Syndrome

The Journey with Plasmapheresis

The Journey with Plasmapheresis

The Journey with Plasmapheresis

Here we have been learning a new thing for the last few days. This is The Journey with Plasmapheresis. It is not something we had planned for right this second. We knew about it and talked with the doctor for a long time. I guess that time is now. I’m not sure what I expected. What I do know is that the Lord is with us. He is good all the time, and all the time, He is good.

“Plasmapheresis involves removing blood through a needle or catheter and circulating it through a machine where the blood is separated into red cells, white cells, platelets and plasma. The plasma, which is the fluid content of the blood, is discarded and replaced with a substitution fluid (mainly albumin solution).”

Frustration with the Doctor

H’s ataxia, behavior, and sleep have gotten a bit worse in the last few months. There has been a lot of frustration with my kids’ lack of attention to their conditions. One day, I snapped. I messaged the primary doctors and expressed my frustration. When you haven’t seen your patient in almost a year, don’t you think he needs to be seen?

I know Co-vid19 has wreaked havoc on everyone. Telehealth and phone visits with health care professionals are necessary for most cases. I get that; I do. Mostly, I enjoy it because I hate waiting forever in the waiting room.

Yet

Does that excuse not keeping up with a patient with an authentic and rare condition. I guess she got tired of reading emails asking her when she was going to see him, what has she researched, does she have anything that could help us.

Her “limited” experience is with OMS, which is related to neuroblastoma. She has one case of a non-neuroblastoma-related OMS…that’d be H. The regular protocol of IVIG, Rituximab, ACTH, Dex, and all those things did not work.

So, plasmapheresis (aka PLEX) was next up. It was either that or a stronger chem. The oncology neuro said that was pointless because HE DOESN’T HAVE CANCER. His B cells have been depleted and come back and don’t play well with others.

It is so confusing.

Day 1

It wasn’t horrible but not the most fun day either. We dealt with the same ER dr, so that was nice. She is on neuro and remembers us from the MANY times we’ve been through the ER. His sedation team was excellent. That got the cath placed, and it was, of course, traumatic, but once we touched all the things and examined them, he was a bit better.

The exchange was LOUD, and it took about 3 hours each. For the most part, it was painless. I mean, he was agitated, but who wouldn’t be? His nurses, as always, were stellar. We only encountered one nurse that, well, that nurse came and went without a word and did not return to our room. That was on day two, though.

All in all, it was an educating type of day. I am learning new things.

Day 2

Let the suck fest begin. Dr. VanderVorte, yep, no words for that doctor; that experience was awful. He needs a new profession. Not very bright or helpful. I had hope for him on day one, but it got worse as we progressed with the exchange.

H is VERY in tune with his body. When he has had IVIG, he always has Benadryl, Hydrocort, and Tylenol. It is to help offset any reaction. During this time with IVIG, he began to have an adverse reaction to Hydrocort. It made, what H says, his penis burn and feel like it was on fire. He thrashes, grabs, and screams until I get in his face by laying on him.

We talk, and I rub his face while they give him Tylenol. Once I can get him to relax, he goes to sleep, and the pain is gone. We no longer use hydrocort. I thought that would be the end of the saga. Alas, I was wrong.

Once the Benadryl hit his bloodstream, he began thrashing, grabbing, and screaming. It is more difficult now because he has an IV and a giant cath in his neck. I couldn’t lay on him, so I had to do more of an arm restraint which scared him.

I told the nurse that he needed Tylenol immediately. She just stood there and watched this all play out. I told her to help him because she had Tylenol. She did nothing. The dr said that he didn’t know the problem and couldn’t fix anything or help him either. He was there to check for his cath.

I mean, he is a dr. I told him what to do. So, I hung my head out the door and screamed for the floor nurse. She came flying in while I was restraining H and immediately TRIED to take action. Only the cath nurse stopped her and told her it WAS A PARENTING ISSUE, AND HE WAS FINE THAT IT WAS ME THAT HAD THE PROBLEM.

That cath nurse didn’t come back. He got Tylenol, and he slept.

Day 3

We were ALL on edge. This time no hydrocort, no Benadryl, his dipwit cath dr didn’t come back, he sent his colleague (excellent), and his regular neuro didn’t have the time to walk across the hall to check on him.

The nurse that came in to do his exchange is the father-in-law of Katie Davis Majors from Kisses from Katie. I mean, Jesus knew I needed this moment. We talked about his condition, what we had been through this current week, and where my mind was, and he was nothing but encouraging and kind.

It was a good day.

Day 4

Day 4 was also a good day. We were in a flow. The nurses were excellent, but his neuro was useless; he never showed up. He ate well, slept well, and we were ready to be done the next day. The end was in sight.

During the night, I noticed he had a slight cough. Nothing big, almost like you have dust in your throat. Upon checking, he had coughed his catheter loose, and blood was everywhere. So, in the middle of the night, an X-Ray had to come in and ensure it was still where it was supposed to be. Then, we had to reposition and retape it. To add to the fun, his IV stopped working, and a new one had to be placed.

Good times.

Day 5

And this is the day that nightmares are made of for me. It started well. I had already packed our stuff and was ready to roll. There was an exchange to be done. Once that was done, it would be removed, and we would be released.

The exchange went normal. For those curious, this machine pulls out all of H’s blood and washes it. It separates the blood from the plasma. We dispose of his plasma and replace it with donor plasma. It’d be cool if it weren’t being done to my son.

Once everything was done, we had to wait for the neuro to come and pull his catheter. Pulling the catheter out is a delicate little dance that has to be done. The tape is usually the worse thing for H, so we were all super gentle in taking the tape off of him.

There were 2 euros. I will refer to them as Twiddle Dee and Twiddle Dum. I am pretty confident they either got fired or quit after this exchange. In the removal process, H had to lay still. H had to do so with his head turned opposite to where his cath was placed. Then he had to inhale and whistle.

Seriously, he is 7.

They both turned THEIR heads and began to whistle WHILE NOT PAYING ATTENTION to what they were doing. I was trying to keep H still because he was terrified. He did all the things, and they got it out. Next up was holding FIRM pressure for 15 minutes because of the massive gaping hole.

Within about 1 minute, H started screaming, crying, thrashing, and clawing at his chest. The look in his eyes was that of straight fear and pain. He was screaming, “mommy help me, mommy help me, my heart is burning, my heart is burning!” He began coughing, and they were still trying to hold him down.

He was cold and clammy but sweating profusely. He was retracting his stomach, trying to breathe, begging for anyone to help him. I was trying to talk to him calmly and tell him that I was there and it was okay to be scared and to use his words so we could help him.

His pupils were pinpoints. He struggled with breathing, retracting, screaming, and saying that his heart was on fire. Then, he started clawing at his IV, chest, me, and whoever he could get his fingernails on. I screamed for the doctors (who WERE STANDING THERE DOING NOTHING AT THIS POINT) to help him.

They said that it was a “parenting issue” and that he was fine, and they would step out of the room so I could control my child. I lost my shit in more ways than one. I held onto him with one hand, stuck my leg out to PREVENT them from leaving, and told them that if they didn’t help my child, I would cause them tremendous physical harm. The reaction H was having was not a parenting issue; this was a medical issue, and they were going to fix my child, or hell would come after them.

About that time, H vomited black bile, stood up in the bed, screamed again, and then went completely limp in my arms. He would not wake up, would not respond to any external stimuli, and no one could wake him. Drs started flying in because they heard him screaming, me screaming, nurses screaming.

No one did a thing.

No. One. Did. A. Thing.

They all just stood there and looked at him. No one could get him up. H was like this for at least 15 minutes. Finally, his breathing went back to normal, and he started to stir. He was so weak he couldn’t hold his head up.

They took an x-ray of his chest and said they saw nothing and RELEASED US. The same idiot neuros who screwed up looked at the X-rays. I was so mad, I couldn’t even speak. The nurse was precious. She just sat, held him, held me, and had me go to the car to get some air. She assured me that he was safe with her. She never left his side. She never left my side. She was as appalled as I.

We get an hour and a half on the road, and the IDIOT dr calls and says, “turn around, come back through the ER; when we pulled the cath, the liquid drained in his lungs, and he has pneumonia. I didn’t look close enough when I told you to leave.”

Are you kidding me, you stupid human? I refused to go because A) I would hurt that person B) I would smile in my mugshot, C) We were closer to our local hospital D) we went there and did not get home until midnight.

My Son

He is a warrior. He has Job’s strength and King Saul’s wisdom and is a friend of God like David. He amazes me in every single way. God has great plans for him. He is going to heal him in HIS time and in HIS way. We will scream our story from the rooftops to help someone else who blindly thinks doctors know everything.

Let me tell you something; I am this child’s leading expert. I know everything about him and everything about his condition. I will never let anyone speak to me again. Ever. I will always speak up and let H use HIS words to express how HE wants to be cared for at any time or place.

God will be glorified. Can you tell why this has taken me almost a year to post? I have had this in my drafts since February. It takes time to heal and process when you think your son has died in your arms.

He heals by retelling his story over and over. I fill in the blanks where he can’t remember. I tell him everything using big words, and I clarify when necessary. This child. He is BRILLIANT and RESILIENT and a FREAKING ROCKSTAR.

Depression

Eye Movement Desensitization and Reprocessing

Eye Movement Desensitization and Reprocessing

 

Eye Movement Desensitization and Reprocessing

 

Eye Movement Desensitization and Reprocessing is something that I will be doing. After a couple of years of tackling acute trauma in my life, a decision came to pass. I have decided to move forward with Eye Movement Desensitization and Reprocessing (EMDR).  EMDR is a therapy that helps you process your trauma through eye movement. Sounds crazy, right?

 

When I Started Therapy

 

It was hard. I’m not going to lie. I told my therapist that I was there for only 52 days (read the book of Nehemiah, and you will understand that). There was one memory that I wanted to tackle amid EMDR. Sounds simple, huh.

 

I love therapy (my Master’s in Marriage and Family Therapy). The thought of being able to help someone through the muddy waters until it becomes clear running is my jam. I love seeing beauty come from ashes (Isaiah 61:3).

 

Yet, it is SUPER hard for me to be in the clients’ seat because I know all the logical things. I know what to tell myself. I know how to process items. I did not enjoy my time at all. I was the worst client in history of ever.

 

Sessions

 

We did the first session, and I freaking went somewhere I did not want to go. That was not my mission; that was not part of my 52-day plan. Not. At. All. I was so pissed when I left. In the next session, we did EMDR; I could not focus. I was already walled up because I did not want to go where I was the previous week. On the third visit, we did the DUMBEST grounding thing ever. I laughed hard because she was so serious, and it was not my jam. I assume she guessed that when I said, “this is the stupidest shit ever, and I’m not doing it anymore.”

 

Point taken.

 

Bless her heart.

 

I would have fired me as a client.

 

Co-Vid Hit

 

With that, we had to do virtual visits. Again, not my jam. I couldn’t focus because my kids were loud. I didn’t feel like I was in a safe place, and I couldn’t concentrate. It was hard. That therapist moved out of the office and took another job in another state (which had nothing to do with me, LOL).

 

They switched me to another counselor. I was set not to mesh with this lady because my mind was already made up. EMDR was stupid, not effective, my 52 days were up, no progress, and now I had to rehash everything with another person.

 

Not happy.

 

Getting to Know Her

 

My new therapist was my jam. We clicked immediately. She didn’t make horrific faces when I said things. It was easy. Comfortable. I’m so grateful to her and how she immediately made me feel so safe.

 

EMDR has yet to happen (next week), but our focus was on the MASSIVE acute trauma that I faced weekly. I kid you not; every week was a new trauma. I’m glad she could swim because she was deep in with me.

 

Complicated Party of 1

 

My life is very complicated, and so is my past. I’m very complicated. I’m an empath to the nth degree. There are so many things that I blame myself for, and I carry with me these notions that are not true.

 

We could not even address my past because my present was so tangled. My present was getting more and more knotted every single day. There were days that I couldn’t breathe. There were times when she was almost insistent that I go somewhere to get into patient care. That’s how bad I was.

 

I kept in close contact with my doctor (medication), pastor, my mom and sisters, and my fantastic husband. Without this support (especially my husband), I would not have made it. I still have bad days, but they are fewer and farther between them.

 

Addressing it All

 

Now, we are ready to dive into EMDR. Today was in preparation for next week, and let me tell you. It was hard as hell. The prep sucked. We are going to try and do EMDR through virtual visits. If that doesn’t work, we have a plan. I will drive to the center for one week to do EMDR in person. EMDR will be with another counselor. Then, I will process the next week with my regular counselor. I’m praying that the virtual does its thing and that I can break down the walls and mindsets that keep me captive.

 

Ending the Stigma of Mental Illness

 

I may write about my processing, as it helps me. Yet, I may not publish it, LOL. I may keep it private to protect those that still need protecting. I can write on my blog and keep it private. I don’t know yet.

 

Today, I learned what a trigger was for me. What reality is and what lies I choose to believe. Now, we have to untangle that mass of lies. This is where we separate the lies from the truth and then live in the land of reality. Instead of it being a trigger, it will be a memory that does not affect me as it does now. Right now, it is crippling.

 

You are Not Alone

 

Please, if you struggle with mental illness, I want you to know something. You are NOT alone. You are normal. You matter. You deserve love. You are enough. Please seek help from a counselor, pastor, friend, or family member. Write, draw, drive around, get on medication, and get an emotional support animal. Do what you need to do to help yourself because you matter. 

 

As I move along this process, I will keep those who care or are curiously updated.

 

Book Processing

Connect and Redirect Technique

Connect and Redirect Technique

Connect and Redirect Technique

The Connect and Redirect Technique is referred to in the book the “Whole-Brain Child.” This technique is one that I hope to do (aka remember in a moment of chaos) with my children. This is where your left brain, right brain, and corpus callosum work together to create a relatable moment.  

The logic of your left side (that is the side I operate heavily off of) and the emotion of your right side (I’ve been told I’m emotionally stagnant) work together in harmony. “Denial of our emotions isn’t the only danger we face when we rely too heavily on our left brain. We can also become too literal, leaving us without a sense of perspective, where we miss the meaning that comes from putting things in context.”  

How My Parents Raised Us 

My parents, in my opinion, are pretty opposite in personality. Pop is the definition of emotionally stunted, and my Oak allows her feelings to be all over her person. We, kids, are a good mix between the two. I’m a lot like Pop in how I handle things. In the past, I would be considered pretty cold and emotionless. As I’ve aged, I’m coming into my feelings and allowing myself to feel emotions. It is strange to be in the moment and let it go.

Still, I keep my outward emotions more to myself than I do to show them to others, but I’m getting better. My Lady taught me about the concept of feeling and allowing myself to show emotion. When she had her first TIA, it rocked my world. That night, the doctor told us she would likely have a massive stroke and die. He had a procedure he wanted to do in hopes of deterring this impending stroke.

The Night That Changed Me

That night, her youngest son and I sat with her at the hospital. At about one in the morning, her son decided that he would head home. She was resting peacefully, and I was happy to stay on hospital patrol. At about 1:30 am, I was sitting by her bed, and out of the blue, she started singing old-fashioned hymns.  

That woman could sing, and it took me by surprise. She was wide awake and belting out some of the most beautiful hymns ever written. In the midst of it all, her nurse came flying into the room. She heard her singing from the nurse’s station. I looked at this sweet young girl, and she had tears. Stupid me, I thought she was moved by how my Lady sang. I was wrong. She was getting emotional because this was the moment the doctor was talking about earlier.

She was having a stroke and how it presented in her was through music. The brain is so astounding. I held her hand and sang with her. After she sat up, she looked at me with wide eyes and asked me if she was done raising me yet. I told her I didn’t feel like she was done. There was so much more for me to learn from her.

Ever so gently, she held my hand. She told me how strong I was and how far I had come in our journey together. My Lady told me how much she loved me, my husband, and our children. Then she talked about her children, grandchildren, and great-grandchildren. She told me I would be okay and that she was so excited to see “her Jerome” and, of course, Jesus.

My Emotions Overcame Me

I cried. My Lady sang. The love she showed me that night is forever etched in my heart. Thankfully, she didn’t leave me that night. The doctor prevented it from taking her life by doing whatever procedure he did. At that moment, my right brain took over entirely. It was such a bizarre feeling for me. However, after that happened, I quickly went into my left brain, where I lived. My emotions were stuff, and I was prepared to call her family and give them a recounting of the events that had happened. I wanted to be strong for them and give them all the information. They loved her way more than me, and they deserved a well-put-together account of that evening. I did that. It felt like I was reading off of a paper.  

When my Doug showed back up, that was a different story. When Chelsea came, that was a different story. I have a bond with them that is different. They know me better than the rest of the family. I didn’t want to be a flake or not know the facts. That woman and Jerome produced some brilliant human beings who loved their Granny Jo very much.

As the Weeks Went By

My Lady would ask me to go over that night. In my mind, this was asked of me because she was having a stroke and didn’t remember. Your brain develops a type of amnesia when trauma occurs. I would busy myself with something mundane. Then, I would go over that night, never looking her in the eyes.  

Her eyes.

I would get to the part of her singing and skip everything that surrounded that moment. My story would always end up with how she survived, how loved she was, and how thankful I was that she was still with us. Left brain. Logic. No right brain. No emotion.

That irritated her. She would rewind and ask me to go over it again. I had to stop and tell her the part I skipped over this time. I had to do this while looking at her. Do you have any idea how hard that was for me?  

My right brain would sneak in, and I would feel the lump in my throat. Then, like a thief in the night, my right brain would take over. She finally stopped me and asked me why I did that. Why do I shut my emotions off?

Letting it All Go

I told her that if I started crying, I would never stop. We talked about my fear of her leaving me alone that night. She eased my soul and said that crying was God’s way of allowing us to heal from the inside out. It was healthy to cry. By golly, I was going to sit there and tell her that story, and I was going to cry. She had tissues in her hand.

I sat at her feet, with my head on her lap. For the first time, I told her the entire story from start to finish. I cried so much my face was swollen. She just stroked my hair and loved me through it. We went through this same thing day after day.  

What she didn’t realize that she was doing was the connect and redirect technique. She was taking a massive trauma out of my locked box and exposing it to light. She made me talk about it until it was filed appropriately in my brain. I can talk about it now. I do shed tears, but it is not all-consuming tears. I processed this night after many years.

God Moment

Wow, this was such a God moment recounting that and realizing that she taught me all the things I would need to know. I thought I was learning all of this stuff from books. Now, I know that through the love and wisdom of her, my parents, granny, and my few support people, I am equipped to parent differently.  

Wow.

I may need to eat my feelings.  

Adoption, Faith Journey

It is Time to Let Go and be Free

  1. It is Time to Let Go and be Free

It is Time to Let Go and be Free

What a phrase that is. Val Kilmer typed that to Tom Cruise in the new movie Maverick. I have been praying a lot. Primarily for clarity in a few situations that are ongoing in our family. God speaks in a variety of ways. I guess speaking through a film is one way to do it.  

At some point in my life, I have to stop torturing myself so much. It is constant. I torture myself daily. I am the kind of wife, mother, daughter, and sister that owns all the things. I question my motives, intentions, desires, and thoughts. Where things go wrong, regardless of who is at its root, I torture myself. Torturing myself has gone on for years. I can’t just let it roll off my back, it absorbs in my soul, and I wear the wrongs like a cloak.

I believe it is time to torture myself a little bit less. Today is a good day. I can believe everything I’m typing. Tomorrow may be different.

As I was floating in our pool, listening to H play, I thought of everything I “own.” Running through my list, I went through all our children, my siblings, parents, marriage, etc. Then, it hit me. 99% of what I torture myself about has nothing to do with me. I didn’t cause it, and I can’t fix it. Let’s jump back into our adoption years.

Life Just Isn’t Always so Tidy.

God’s plan isn’t always so easy to understand. Our first plan was international when we decided to expand our family through adoption. I knew Ethiopia was in our future at a young age. Yet God had other plans.  

He brought in our first set of kids for a season, reuniting them within about a month with their birth mom.  When the left, I thought I had done something wrong.

For some reason, I believed it was my fault that they returned to their mother. I was so young and inexperienced in foster care and adoption through the foster care system.

I know now that reunification is always the first thing to do, if possible. What a beautiful thing that they got to go back to the one that gave them life. It was a short season with her, but I know that they are safe and loved with the family they are with now. I can let that go. My love for those kids will always be powerful. Yet, God had other plans. Now, I can be happy and thankful I was a safe haven for them. They were loved by us and loved by so many people.

Release.

Sometimes Reunification is Not a Possibility.

When we got the call for our second set of kids, I allowed fear to creep into my heart. Sadly, I had not healed from the loss of the previous two children. Again, I wore a cloak and tortured myself for something that wasn’t mine to wear.  

Reunification was not in the cards for our second placement. We met these kids so full of tentative smiles and lots of hyperactivity. We were eager to expand our family. Yet, we tried to do everything right to reunify them with their birth mom. Sadly, that didn’t work, and trauma was prevalent.

Coming from Foster Care is a Tricky Thing

These kids were coming from multiple foster homes. Living in numerous homes was due to behavior, PTSD, and more. We were so ill-equipped to handle the needs of one of the children and we had no help or resources from the state.

Looking back, almost 16 years later, we see all the signs. Then, we just wanted to heal, love, and show this child Christ. One of my kids has written some powerful things about foster care and abuse. Those things are very well-spoken.

Now, this young person is someone I don’t even know. A lot of damage has been done, and bridges have been burned. However, my (our) love for this child will always remain steadfast, though we have to protect the other kids in our home.

I hope that one day, we can all be reunited. Forgiveness can take place, and healing can happen. Healing and forgiveness can only be orchestrated by the One that loves us all.

Right now, that isn’t what is going to happen. For years, I thought I was crazy. Hindsight is 20/20.

Now, I see where I was at fault, and I’ve apologized and made peace with it, for the most part. Again, I’m wearing a giant cloak that is not mine.  

I am not responsible for the decisions being made now. The things in the past I’ve owned, asked forgiveness for, and tried to remedy within myself. Sadly, I have no control over what is going on now. I pray that help is sought, proper medication, therapy, nutrition, sleep, and a lot of Jesus will permeate this child’s life.  

In my life, I choose to continue with therapy, confide in those closest to me, seek the face of Jesus, and prepare for rain. Preparing for rain looks different for everyone. In our case, we have cameras up, people who need to know are made aware of things, an attorney if things go in a way they shouldn’t, authorities are on alert, and documents are gathered. Preparing and doing these things are not indicative of anything other than protecting my other kids. My hope and prayer are still that the Lord reunites my whole family.

Release.

Things are Looking Up

Our pool is working, the air conditioning is cooking (though it is limping), we are all healthy, and great things are on the horizon. I have introduced my grandkids to music! Music is one thing that we missed in those years. We had to limit it due to some obsessions. Now, my home is flooded with music and dancing. My grands love opera! We listen to blues, the 60s, classical, praise and worship, old hymns, Frank Sinatra, and much more. Then there is J & D’s music. I’m not sure what you classify that as, LOL. It is so joyful and peaceful (most of the time).  

I have plants that are still alive. That is a fantastic thing! We are slowly redoing the things that need to be renovated in our house. Thankfully, I’m not obsessing over those little things. I’m reveling in the fact that we can and are making progress. H has made great strides and improvements with his OMS and behavior. J is thriving. D is succeeding, and his growth astounds me. Our relationship has improved a 1000%. We talk every night. I mean, honestly, what teenage boy wants to talk to his mom every night. Yet, he calls like clockwork, and we have the best conversations. My bigs are healthy, grandbabies are healthy, and my son is having an event in March. My parents are here often, and I love that so much.

Release.

In All the Thanks for the Above

I still miss my one. Still, I want that one here enjoying everything and being a part of our life. Yet, that isn’t going to happen right now. It can happen, and I pray that it will. For now, I continue to pray for healing. I revel in peace. Slowly, I take off the cloaks that are not mine. I’m giving them back to whom they belong while owning what I need to own. I’m prepared for the rain. I am not afraid. We are good, safe, loved, and healthy.   

Release.

Guest Blogger, Lyme Disease, Medical Issues

Lyme Disease Information, Diagnosis, and Healing

 

Lyme Disease Information, Diagnosis, and Healing

Lyme Disease Information, Diagnosis, and Healing

My friend, Lesley Emerson, wrote about her daughter’s Lyme Disease journey a few years ago. Soon after that, we did a series of informational posts on Lyme. After the series, Callie was brave enough to write and bear her soul on this journey of illness, healing, and faith. To ensure this story is not buried amongst other blog posts, I thought I would consolidate them all.

What is Lyme Disease

What IS Lyme Disease? Borrelia: A tick-borne illness that can cause fatigue, flu-like symptoms, and a bulls-eye rash. The bulls-eye rash is only one part of Lyme Disease. There are about a billion other things that are comorbid with this disease. The bulls-eye rash is unmistakable. What starts as a tiny little bump begins to get bigger, warmer, and hard around the center. That’s when you know it is more than a typical tick bite. Seek treatment. Do not settle.

It is a corkscrew-shaped bacteria that gets all up and “screws” into place. The shape makes it incredibly hard to get rid of in the body. There is so much information on the CDC website.

I mean, look at that list above. ALS! MS! Alzheimer’s! Lupus! Bi-Polar Disorder! There are so many more. I’m so thankful for where the Lord led us.

As we followed His path, Callie was healed through non-typical methods. Step out of your box—color outside the lines. Be the patient who does not settle for a blanket diagnosis. Find the root of your illness. You can do this because you are capable and strong.

Lyme Disease Easy to Diagnose

Lyme Disease is easy to diagnose and is easy to treat. You might assume that if it were a possible cause of your illness, your medical provider would have considered that before your diagnosis, and there’s no need to discuss it now.

If Lyme Disease is easy to diagnose, why isn’t it standard practice for anyone showing signs of autoimmune illness, mental illness, autism, or other related illnesses? It’s pure and simple, and nothing shows it better than this picture of Callie administering her IV antibiotics that cost us (with insurance) $700 per week. 

Yes, we had insurance, but they paid for only the first 30 days of treatment. Thirty days is not nearly enough. Callie did this 3-4 times each day and would become very ill afterward. Our medical system has been taken over by greed, thus tying the hands of and misinforming our medical personnel.

I admired his conviction, but honestly, I cannot imagine risking my livelihood for someone I barely know. Please do not assume your doctors considered the possibility of Lyme before diagnosing you with something else.

Btw we found a much cheaper alternative, so don’t let that scare you.

Guess who has Lyme disease: Hereditary??

Hey! Guess Who Has Lyme Disease? ME!

By definition, the word hereditary means determined by genetic factors. Simply put, it can be passed down from generation to generation because Lyme is not correctly diagnosed (or misdiagnosed) or treated promptly. Lyme disease and co-infections are a generation-to-generation gift.

Although I’ve never been sick like Callie was, I know I am a carrier of this little gem because she had it. A tick can carry Lyme disease. However, Lyme is likely to be congenital.

Have you ever noticed that people in your family have similar health issues? Do you ever wonder why or think you are next in line for XY or Z? It doesn’t matter that you have had a negative test for Lyme.

Callie Had Three Negative Tests

The discouragement is real. Also, the weird and random symptoms were real. Fighting, going against the grain of society, and seeking out alternative healing methods is the key. I’m not saying that modern medicine is not something you need. It is. What I’m saying is sometimes you need more.

Lyme Disease does not travel alone. It’s important not to think chronic Lyme disease only stems from ticks. It is most often congenital and is a gift handed down from your parents.

One of the reasons it can be challenging to diagnose or be considered is because the symptoms are so broad. The signs are widespread because several co-infections go along with Lyme, and everyone has a different combo of them.

Lyme never comes alone. It always brings at least one co-infection. Your symptoms may be fatigue and pain, while another has migraines or depression. That’s because you have different co-infections.

Callie had Lyme and four co-infections. Guess who tested positive (although symptom-free) for Lyme and the same four co-infections?

My parents–yup!

Why are they symptom-free? Here’s how it works: God made you with a fully functioning immune system, and if we left it alone, it could handle all the gunk we inherited, plus things we are exposed to now.

Any number of things can give it a whack and make it limp a bit where it cannot fight at its full potential. When that happens, some of these fundamental things can pop up. Of course, we all know that the food we eat and all the junk we are doing to ourselves are a factor. Then other things can give your immune system a whack that’s just enough to be a trigger.

For Callie, it was an exposure to an insecticide (probably while playing soccer). Then she had her 6th-grade booster shots. That whacked her body just enough that she began having her first of many symptoms a month after having them. Because Lyme Disease does not travel alone, she not only Lyme but four other co-infections her body was battling.

Any Big Stressor

I’ve heard others have been in a car wreck or gone through a divorce (any significant stress). Some had gotten a flu shot, had anesthesia or had a significant health crisis. Afterward, their symptoms began.

All of those things can affect the function of your immune system letting congenital Lyme take over. Once Lyme Disease takes over and does not travel alone, other symptoms begin to emerge.

So if your family tree looks similar to the one below, there’s probably a good reason.

ALS and Lyme

ALS and Lyme Sneaky Little Bug. Lou Gehrig’s Disease is often misdiagnosed. However, the root is undiagnosed Lyme Disease. Lyme is such a sneaky little bug.

There are so many things that run comorbid with Lyme. The comorbid diagnosis is the one with the name, when Lyme gets away, undetected. Again, have your doctor do testing through Igenex. That is the key. Please, advocate for yourself if something seems off.

Sadly, it is the beast that is Lyme Disease.

This disease is horrible. A cure needs to be found. It saddens me that one little thing can cause and wreak so much havoc. So often, it is misdiagnosed, and people suffer. Needlessly. I mean, I had Lyme show up because my mom had it. We have to advocate for ourselves and our health. No one else will do it because only you know you.

For more on ALS, please check out The ALS Association.

Where does it hurt?

So, where does it hurt? Your joints, your head, your fingertips, your back? Why are there so many symptoms of Lyme disease?

The bacteria is corkscrew-shaped and can bore into any tissue or organ in your body. How scary is that? It makes me think of something that bores into my skin or organs.

Some people have neurological issues because it is predominantly in their brain, some in their digestive tract or back, or anywhere from the top of your head to the bottom of your toes, making it difficult to diagnose just based on symptoms alone.

Testing is super easy with the Western blot test from Igenex Labs!

When your body is hurting, it is time to enlist the big guns at Igenex Labs! Igenex is the lab that has the most accurate test results. Other tests may come back as a false negative. You want to be accurate in determining whether or not you have Lyme Disease. Please be wise. Ask questions. Be an advocate for yourself. It can be challenging and intimidating, but you are your only advocate. Be loud and be heard.

Lymsomnia

Insomnia, or as Callie used to call it, Lymsomnia, is a prevalent symptom of Lyme disease.

Before treatment, insomnia kept Callie up all night, anywhere from 2-4 nights per week.

That fact adds up over several years. Erik and I took turns sitting with her so she didn’t feel alone. Sadly, this is why we have so many wrinkles, haha! Insomnia is so hard to handle. Losing sleep, restless sleep, or interrupted sleep can cause many other issues. It is a never-ending cycle. Maybe the term “Lymsomnia” should be in the dictionary.

Sleep Deprivation

Some signs that you may be struggling with sleep deprivation are memory issues and critical thinking skills. There can be mood changes, high blood pressure issues, weakened immune systems, etc. Most people blindly accept what diagnosis they are given. Then, they do as the instructions say on the bottle. But. What if it is more.

Sound Familiar?

If you are reading this and these things sound familiar, do not ask your doctor for a Lyme test. A Lyme test will likely come back negative. A negative test is one of the reasons so many people are slipping through the cracks. Also, not getting a proper diagnosis. The test most doctors use is entirely ineffective. There is one test and only one reliable lab in the country. Igenex Labs.

Crohn’s IBS Colitis Behcets

Crohn’s IBS Colitis Behcets Most of the “Lymies” I know have been told they have IBS.

IBS is “a common disorder that affects the large intestine. Signs and symptoms include cramping, abdominal pain, bloating, gas, diarrhea or constipation, or both. IBS is a chronic condition you’ll need to manage long term.”

Crohn’s Disease Symptoms are “inflammatory bowel disease (IBD). It causes inflammation of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss, and malnutrition. Inflammation caused by Crohn’s disease can involve different areas of the digestive tract in different people.”

Colitis

Colitis Symptoms is “a chronic digestive disease characterized by inflammation of the inner lining of the colon. Infection, loss of blood supply in the colon, Inflammatory Bowel Disease (IBD) and invasion of the colon wall with collagen or lymphocytic white blood cells are all possible causes of an inflamed colon.”

Behcet’s

Behcet’s Symptoms are “a rare disorder that causes blood vessel inflammation throughout your body. The disease can lead to numerous signs and symptoms that can seem unrelated at first. They can include mouth sores, eye inflammation, skin rashes and lesions, and genital sores.”

It’s on my list of medical things that have popped up. However, we’ve given it a name. Surprisingly, we did not check to find a root cause. For example, with Lyme, any muscle in your body can spasm. Also, tummy troubles and Lyme go hand in hand.

Please, be aware, ask questions, do not take NO for an answer, and advocate. You are an expert on your body, do not let anyone tell you any different.

 

Reviews and Giveaways

Tyson’s Run Review and Giveaway

Tyson's Run Review and Giveaway

Tyson’s Run Review and Giveaway

Here is a brand new review and giveaway from the Momentum Influencer Network.

Don’t miss this feel-good story of faith, courage, grit, and unlikely alliances for a teen on the autism spectrum. You will come away inspired! Have you ever found yourself trying to get the approval of a parent? If not, you likely know someone who has. That’s where Tyson, a teen with autism, finds himself as he watches his hero father lead the high school football team. Tyson’s Run is not only relatable but also a beautiful picture of the rewards of dreams, determination, and relationships when we don’t quit.

The cast includes Major Dodson as Tyson, Barkhad Abdi as Akilu, Amy Smart as Eloise, Rory Cochrane as the coach, Layla Felder at Shannon, and more. Fun side note, if you ever watched Mike and Molly, you will recognize the “mayor” of this movie, Reno Wilson. In addition, four-time Grammy Award-winning gospel singer Yolanda Adams recorded if You Believe an original song just for Tyson’s Run.

A Movie We Can All Relate To

Tyson’s longing to be accepted by his father leads him to push himself further than anyone might have thought possible. Ultimately, it is a heart-warming story of overcoming odds, changing perceptions, and of love winning.

When fifteen-year-old Tyson attends public school for the first time, his life is changed forever. While helping his father clean up after the football team, Tyson befriends champion marathon runner Aklilu. Never letting his autism hold him back, Tyson becomes determined to run his first marathon in hopes of winning his father’s approval. With the help of an unlikely friend and his parents, Tyson learns that anything is possible with faith in yourself and the courage to take the first step.

My Thoughts

This movie had me all in the feels. The family has a child who is on the spectrum. I want it known that not all kids on the spectrum are the same. Every single child is different, and they are all capable and wonderfully made. I have two kids on the spectrum, so I believe that statement. A marriage can face struggles when having children with any issues is difficult.

“According to the documentary film “Autism Every Day,” divorce rates for families with children with autism are as high as eighty percent (80%), and for families of children with all disabilities, that number has been touted as high as eighty-five to eighty-seven percent (85-87%).” This statement is from the documentary film Autism Every Day. In our family, we have two kids on the spectrum, two kids with FASD, a child with epilepsy, a child with single-sided deafness, a child with multiple mental issues, a child with Opsoclonus Myoclonus Syndrome, and then there are all the other things. My marriage is destined to fail, according to that statistic.

This movie tackles the challenging moments between a husband and a wife just trying to do their best for their child and to set them up for success after they are gone. I get it. I mean, I get it on a personal and profound level.

Mix that in with public school and bullying, a “geriatric” pregnancy, and life…you get the struggles of this family. I also have a son from Ethiopia, so seeing the role that Barkhad Abdi plays makes my heart happy. He is a Somali-American, and he is a beautiful and talented man.

This movie must be shown in all the schools, across the board. Bullying is never good and can affect the life and well-being of those considered “less-than.” Suppose you are different than others; congratulations to you! This is not a deficit! You are capable of everything and even more, because you are so in tune with yourself and have compassion beyond compare.

To my husband, even in the hard times and the times we have tried to give up, you are my heart and my person. I am blessed to be walking down this hard road with you. Please don’t give up on me, and I won’t give up on you.

Important Information

You can buy your digital copy or DVD of Tyson’s Run anytime.

Also, you can check out more information on their website.

Official Trailer: Tyson’s Run

Giveaway Rules and Disclosure Information

One digital copy of Tyson’s Run. Please note: this is limited to US winners only. Many thanks to Collide Distribution for providing a sample of the product for this review. Opinions are 100% my own and NOT influenced by monetary compensation.

Life or Something Like It

Barefoot Faith Journey Blog Update

Barefoot Faith Journey Blog Update

Barefoot Faith Journey Blog Update

I mentioned in a previous post that I’m updating my blog. This blog has been going on for about ten years. I started this blog when we began our third adoption. Initially, it was more of a journal for me: something to remember, a place to keep my family updated on our adoption, etc. 

He has been home for ten years, and things have shifted quite a bit. We thought adopting again was not going to happen. I, we, were utterly content with our six children. There was much to work through with their trauma, but we were in a good flow.

Content is a 7 Letter Dirty Word

I mentioned, in prayer, that I was content with my family. That I no longer desired to bring children in through adoption. Honestly, I just wanted to focus on the healing that needed to happen with my kids from hard places. I returned to school to get my master’s in marriage and family therapy, shelf-cooking, cleaning, homeschooling, and things.

However, with God’s funny sense of humor, in November 2016, we (at 42 and 41 years old) began raising our great-nephew. He was 21 months old at the time. Hello Shock. Nice to meet you. I had a 21-month-old 7th child, and my 6th child was eight years old.

So, my blog stopped. I was busy beyond busy. Lots of things going on in that familial situation put everything on hold for me. Then, in June 2017, H got sick with Opsoclonus Myoclonus Syndrome. From then, my blog started back up a bit to process everything we were going through.

Keeping My Eyes Above the Waves

Since then, it has been hit and misses with when I write. I go in spurts of cooking, grief, trauma, life events, processing of everything, and a terrible season of suicide updates with lots of resources.

I’m trying to revamp what I want in my corner of the web. Yes, I still love Jesus, cheese, and cats. Also, I’m a huge adoption advocate but with a different perspective. I parent children from trauma, and we are muddling through that. There are moments when I’m considering getting my doctorate and going back to work. Cooking is not as much a passion though it is a necessity.

Sifting Through it All

I am going through the last ten years’ worth of posts, which is around 800 posts. There is a lot that I’m choosing to mark as private. Reflection has caused me to have a new set of eyes. I’m keeping them for my kids but not for the public.

There is a lot of SEO work that I’m doing, which is not my idea of fun, but it is necessary. You will never notice several things because it is on the blog’s backend. I’m taking all personal pictures of my kids and grandkids off of my blog. I don’t want to post any images without their permission. That goes for my social media stuff, as well. If you see a picture I might have missed, feel free to send me a message and let me know. I am also attempting (though probably going to fail) at taking my kids’ names off of here.

I want to share things in my journey that might relate to a lesson we have all learned through a parenting experience. Yet, I don’t have to attach a name to that story. I will forget and miss a post, but I will do my best.

PTSD Lockbox

For now, I’m reading a lot and learning a lot. I can process and refile something in my brain in the proper spot. I am working on going through my special “PTSD” lockbox, picking out memories or events, and writing about them so I can process them properly instead of keeping them locked away. I no longer want certain things to trigger me and cause a reactive response. If you work through those deep dark things, you can get them out of that lockbox and file them accordingly. When you do that, you no longer have a trauma response; you have a crappy life experience that no longer holds you captive.

So, bear with me. Subscribe if you want. If you do, you will get notifications in your email when I write something new. Be a guest blogger. I’m good with that as it is pertinent to my content. Give me book suggestions or ideas if there is something you want me to tackle. Ask if you have questions here, my email (barefootfaithjourney@gmail.com). You can also like and interact with my page on Facebook, Barefoot Faith JourneyPinterest, or Instagram.

Cooking

Hashbrown Chicken Casserole

Hashbrown Chicken Casserole

Hashbrown Chicken Casserole

As I went through my freezer, fridge, and pantry, I came up with this dish. At the end of this post, I will put what I will do differently the next time I make it. It made a 13×9 dish so that we would have leftovers. Next time, I will put it in a smaller glass dish and then an aluminum pan. From there, I will cover it well and freeze the extra. That way, I will stock up my freezer. By making a big batch and freezing half, over time, you will have enough to feed your family for at least a week. In my case, I usually do this once a month, so I can go a whole month using the food that I cooked. Cook, eat once (leftovers), and freeze the other. You will not regret it.

Ingredients

Chicken (I had frozen Tyson grilled chicken. You can use canned chicken, cook a whole chicken, or buy a rotisserie chicken or chicken breasts. I sound like the guy off of Forrest Gump describing the different types of shrimp.)

Bacon (bits or fry and crumble)

Seasoning

Garlic butter (I used leftover Papa John’s garlic butter)

Minced garlic

Onion, chopped

Portobello mushrooms, chopped

Two c. sour cream

One can of corn, drained

1/3 c. milk

Bread crumbs

Cheddar

Hashbrowns (I bought the cubed southern hashbrowns that have chopped-up peppers)

Directions

Preheat your oven to 400. Grease a 13×9 dish and place your hashbrowns. I sprinkled the top with seasoning and mixed that up to get it all coated. Future me will add the seasoning and then a packet of ranch mix. On top of that, I added my garlic butter. Future me will make a garlic-infused compound butter to put a few pats on top. Oh, Ghee would be good too! I do love me some Ghee.

In a large bowl, I cut up my chicken strips and then added all the ingredients (including more seasoning and a packet of ranch) except the bread crumbs and a handful of cheddar. I did, however, mix some cheddar in with the chicken. Once that is all mixed, spoon over the top of the potatoes.

I then sprinkled some Italian Bread crumbs (any will do Panko would be good) and used the rest of my cheddar. Cover it will aluminum foil and bake it for about 30 minutes with the foil on tightly. Take the foil off and let it cook for another 10 minutes.

I served it with leftover hotdog buns that I buttered and put garlic on. We are living the dream over here!

What I Will Do Differently

Next time, I will add bigger chunks of chopped peppers. Also, I will probably add a couple of packets of dry Ranch seasoning. The verdict is out on the corn. I liked the sweet pop of flavor, but it was also weird. That’s a mental thing for me. I will probably fry bacon the next time. This time I used bacon bits. Also, I will probably heat my chicken with some bacon grease for added flavor. Oh, chopped spinach would have been great in this!

Book Processing

More on Brain Integration

More on Brain Integration

More on Brain Integration

I continue diving into the book, The Whole-Brain Child, and now we are looking at brain integration. My last post, linked below, states, “Integration takes the distinct parts of your brain and helps them work together as a whole.” When you or your child are overwhelmed, or your emotions begin to take over (chaos) completely, you are not in a state of integration. You are in a state of dis-integration. That is not where you want to be.

It is easy to find yourself in the swirl of dis-integration. I can calm down and reflect on why I’m reacting the way I am, but in the end, you have to work in full brain integration mode. You must not be living and responding from the “downstairs” part of your brain.

Types of Integration

First, you have the “horizontally integrated” type. This type taps into your left brain logic which works well with the right brain emotion. Also, you want to be “vertically integrated.” Doing this allows your upstairs brain to work well with your downstairs brain. The upstairs part of your brain helps you think about your actions. The downstairs portion of your brain is about instinct, gut reactions, and survival. I can honestly say that I’ve been in survival mode for the last, I don’t know, 14 years or so.

There is good news, though. Your brain is malleable. Being malleable means, you can make new tracks. Your reactions don’t have to follow the ditches that you have so carefully constructed. You can veer off course and make new roads, new pathways. Your neurons can detour anywhere you want them to. Eventually, those old ditches full of trauma, bad reactions, and intense emotions begin to fill in. A new road permanently replaces them! Your brain can be in a constant state of road repair. Honestly, this is excellent news.

“When neurons fire together, they grow new connections between them. Over time, the connections that result from firing lead to ‘rewiring’ in the brain. Such inspiring news. It means that we aren’t held captive for the rest of our lives by how our brain works at the moment – we can rewire it to be healthier and happier.”

River of Well-Being

When our brains are well integrated, it is like we are sitting in a boat or on a raft, just floating down the river. The water is calm; the weather is perfect. You are at peace. When dis-integration occurs, the current can shift you to the left (chaos) or the right (rigidity).

Chaos is when you “feel out of control…confusion and turmoil rule the day.” So, you quickly try to get back in the center of the water but accidentally veer to the right side of your brain, rigidity—the opposite of chaos. “Rigidity is when you are imposing control on everything and everyone around you. You become completely unwilling to adapt, compromise, or negotiate.” In the end, one side lacks control, and the other is too much control, leading to a lack of flexibility and adaptability.

Recounting This Past Week

I can see that one child was living on the right side of his brain. Chaos ruled his world. This child was not living in that peaceful water spot.

On the other hand, I was utterly working from the left side of my brain. My raft was firmly in the smelly, reed-filled water of rigidity. I wanted to control the situation and have everyone back in the river’s center. It was my way or no way. There was no connection, no discussion, nothing. Neither of us was in that sweet spot of integration.

“If you see chaos and/or rigidity, you know someone is not in a state of integration. Likewise, when someone is in a state of integration, they demonstrate the qualities we associate with someone who is mentally and emotionally healthy: they are flexible, adaptive, stable, and able to understand themselves and the world around them.”

Brain Integration

Ultimately, the fact that our brain is plastic and can change gives me hope. Yet, I struggle with staying in the middle of the lake, cruising along without a care. I veer onto both sides of the lake with great ease. By doing that, I’m risking the heart connection I desire with all my children and husband. I have got to figure out a way to recognize what I’m doing/saying and stop myself in my tracks. There has got to be a point where I can remember these issues. I want to be an ally for them instead of their enemy.

How do I do that? That is the question.

Quotes

When Feeling Angry Ask Yourself These Things

When Feeling Angry Ask Yourself These Things

Plans are a Good Thing

We have a current trigger that we are all aware of at the present moment. My goal tomorrow is to divulge that trigger to a few of this child’s therapists. Goal? I want to ensure they know what we are dealing with so that compassion, grace, and love can be present. Also, we are starting a new medication that might help (or make him worse; it’s 50/50).

Instead of this week, I’ve made arrangements for a friend to homeschool this child throughout the summer to help with the process of “catching up” in school before he starts his second first day of second grade.

Plans. We have them.

Behaviors

So, here are the questions presented to me. Let’s see if I can dissect them and determine my problem. I need to know how to address this problem with my therapist so I can not be in the way of my child’s healing. It is all so complicated. It’s a lot of information.

Let’s Break it Down.

  • What need is not being met?

A need not being met in him or me. In me, the need to be in control and control a situation. I should disengage, as my sister says. Ignore. Have appropriate discipline, if needed, and let my husband bear the child-rearing responsibilities.

This child (in my opinion) doesn’t feel heard. It feels like his feelings are validated. He is also a product of his environment before us. He has seen a lot of chaos with another child and has taken on that role. Nothing is said or done that is “fair” to him. He sits in the wrong seat, has the lousy cup, doesn’t want to do this, or doesn’t want to. Sadly, flatly refuse to make simple requests.

  • What boundary is being crossed?

The boundary from parent to child is just a simple lack of respect. There is no desire to listen. The limit might be that he wants what he wants, when and how he wants it done. That isn’t practical.

  • What do I wish to express at this moment?

I wish I had expressed understanding of the situation and corrected him accordingly. He wanted to say his desire to have a do-over and eat with everyone else. Have whatever he wants to eat, even if it is something I didn’t make.

  • How can I express myself in a way that will be authentic to who I am and not merely a reaction?

This quote about life, or rather this quote about anger, has me thinking. Sometimes, I can shake it off. Other times, I can let my husband deal with it and realize that I don’t have to be in every situation.

I first need to figure out who I am to express myself that is authentic to who I am. I know WHOSE I am but not who I am. Is that the same person? I don’t know. What I do know is that this heat is driving me insane. Having to pay for another unit whenever it arrives will be torture. I’m mad that the pool people have not been out or answered their phones.

This moment shall pass. It might pass like a kidney stone the size of Montana.