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.

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.

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Let Us Marinate

Let Us Marinate

Let Us Marinate

 

Let Us Marinate on the picture. Open it up, enlarge it and just look. This canvas is a 16×20, and there is NO room left to put ANY type of bead. Beads of Courage is defined as “Every time a bead is given, courage is honored, suffering is alleviated, resilience is strengthened, and the experience of human caring is affirmed. Every Bead of Courage Program integrates the use of beads, the earliest art form known to humans, as visible, tangible symbols of human experiences that need and deserve to be expressed.”

This is my youngest son’s canvas of all of his beads. We kept them, for the longest time, on strings. The strings didn’t hold up, so we were able to get 2 beautifully hand-crafted wooden boxes that were overflowing. So, one day, I thought…let’s see what I can come up with. What I ignored was the WEIGHT of this thing. There is no way a nail can hold this thing up. We may have to prop it up or use 2 nails and a wire…it is heavy!

Each Bead

You will notice that there are different types of beads. Each bead is indicative of a procedure/therapy/accomplishment/etc. that the child has done. I will say, H did not earn any beads for the first 3 years of his disease. This was because BOC was a program for terminally ill children or children with cancer. I believe there was also, at his hospital, a cardiac program. When we moved hospitals, the requirements changed. Now, BOC includes those children/young adults with life-altering conditions. So, these are the beads he has earned in the last 2 years. Can you even imagine if we were to go back and get them for the first 3 years??!!

Oval Type Beads

Orange (too many to count)

Central Line (PICC), Broviac, Port, Midline, IJ, Pheresis Catheter Placement & Removal

Blue (too many to count)

Clinic Visit

Dark Green (0)

Dialysis, TPN, NPO

Gray (too many to count)

Dressing Change, Central Line, Osteotomy, Trach, Surgery Site, Others, & Skin Care

Glow in the Dark (2)

Echocardiogram

Magenta (too many to count)

Emergency, Unusual Occurrence, Seizure, Emergency Transportation

Light Blue (too many to count)

Eye Exam, Eye Drops, mouth Care related to Treatment

Glass Star (20)

General Surgery

Brown and Face Bead (2)

Hair Loss, Hair Growth

Lime (several)

Isolation Precautions, Fever, Neutropenia

Purple (too many to count)

IV Infusions (One bead per day or initiation & Discontinuation)

White (too many to count)

Learning New Medications, Parent Education

Beige (too many to count)

Nutrition & Diet Transitions

Yellow (too many to count)

Overnight Stay in Hospital (one bead per day)

Black (too many to count)

Pokes, IV starts, blood draws, subq & IM injections, port access, suture placement.

Tortoise (too many to count)

Procedures include Cath lab, biopsy, LP, casting, scope, shunt tap, IR, wound care, EVD, joint injections, aspirations, and others.

Pink (too many to count)

Respiratory support, sedation, anesthesia, ventilator

Silver Star (14)

Suture Removal, Staple Removal

Light Green (too many to count)

Test, Scans, CT, MRI, X-Ray, EKG, EEG, PFT, PET, US, BE, UGI, Nucl. Meds, Others

Rainbow (250)

Therapy, support staff visits (PT, OT, SLP), Others

Red (5)

Transfusions, Blood products, Pheresis

Aqua (a bunch)

Tube, Catheter Placement & Removal, NG, NJ, G-tube, Chest Tube, Foley, Drain, Others

Papa Beads (too many to count)

He got this from his Papa’s private collection. These beads are SO precious to me.

Special Beads

Handmade Glass Selection (68)

Acts of Courage, Treatment-related Milestones

Square Heart (3)

Admission or Transfer to Intensive Care Unit

BOC Signature Heart (2)

Completion of Treatment, Transfer to Adult Services

Ceramic Special Selection (50)

Independent self or parent giving infusions or injections, Following medication schedule, Special accomplishment, Recognition of Personal or Family Accomplishment

Bumpy (52)

Medication Challenges, Taking, learning, self or parent giving infusion or injection, Mobility Challenges, lying flat, bed rest, crutches, splint, wheelchair, 1st walk after surgery, other.

Fish (60)

Transfer units or facilities, long-distance travel for care, “upstream battle.”

Transplant Glass Selection (24)

Transplant

Member’s Choice (15)

Discharge from hospital

Let it ALL Sink In

This child, who got sick on June 6, 2017, had WAY more procedures, pokes, traveling, transplants, and all than he has had in the last 2 years. This canvas is only the last 2 years of the 5 he has had since he has gotten sick.

Resiliency.

He is fantastic, brilliant, strong, capable, and able, and now he is HEALED. I never thought I would say that word concerning H, but here we are saying it loud and proud for all to hear. God is good. I didn’t think He was good. Honestly, I wondered if He even existed sometimes. Yet, I had warriors all around us that held up my arms and faithfully prayed for my son. They were my faith when I had none.

My Theme Verse

Romans 4:18-21 Against all hope, Abraham in hope believed…Yet he did not waver through unbelief regarding the promise of God but was strengthened in his faith and gave glory to God, 21 being fully persuaded that God had the power to do what he had promised.

Take that OMS!

 

Medical Issues, Opsoclonus Myoclonus Syndrome

Good Times Never Seemed so Good

Good Times Never Seemed so GoodGood Times Never Seemed so Good

In Good Times Never Seemed so Good, I will outline our next round of “guess H’s diagnosis.” It’s a fun game set to Neil Diamond’s “Sweet Caroline.” After almost 5 years, let’s see who can guess what diagnosis we are going to get! It’s been a nail-biter over the years, but I feel like someone is getting closer to winning the game. Why does Neil Diamond’s “Sweet Caroline” come to mind? I simply don’t know. There is so much I don’t know, though.

Happenings as of Late

Our neuro has gracefully exited stage left with us. After our PLEX experience, Dr. James feels like she has done all she can do. Honestly, that wasn’t much, so I’m not too sad about it. We still need to find someone new, but I’d rather eat thumbtacks.

We have a Geneticist and a Movement Disorder doctor. They know nothing, either. Our Geneticist has requested a lot of bloodwork, which we’ve done. They also wanted a new level of testing since no one had done anything since this started.

Since all his genetic testing has come back clean, and we cannot get swabs from bio parents, we have to go a different route. So, we are redoing all of his tests. I am not opposed to that because he hasn’t had them done in about 3 years. If any doctor was worth their weight, we would have this testing done every year.

But let’s face it, they don’t care.

Coming Up

H will have a Lumbar puncture to check his opening pressure and see if he still has more or has fewer Oligoclonal bands. The last time he did this, his opening pressure was high, and he had 5 bands.

Does anyone know what to do with that information?

Hell no.

No one knows anything.

With that LP, he has his MRI, MRS, MIBG, and a CT Scan. This is to check his cerebellum and see if any tumors have popped up. Once we get all this information, they want us to get involved or apply to the UDN.

That is the Undiagnosed Network. Basically, all these doctors do is rare study things and give something that doesn’t have a name…a name. Possibly, again, it isn’t OMS because he has been medicinal resistant.

No one knows anything. Do you know how many doctors we have seen? I can’t even.

As We are Driving to Nashville

I get a call as I turn the corner to be in the city. It is the surgical nurse calling me to RESCHEDULE his surgery. I thought I was going to implode. Though I knew this sweet woman had nothing to do with anything, I was going to light into her.

I refrained. Her job is tough, and she is the one that takes the anger, while the doctors are the ones who get no words spoken to them because they are “gods,” and people are scared to say anything crosses to them.

However, I am not too scared. I’m so sick of being talked at, talked around in circles, lame excuses, no shows…I’m done. This is my 7 yr old life. He is not a toy to be tossed around like a hot potato.

I explained that we had just driven almost 3 hours and were in town. That not doing the procedures was not going to be an option. After about an hour, the nurse called again and said that another doctor would be doing the procedure.

So Here We Go Again

He has eaten and watched more tv than usual. He is tucked into bed, and we wait until morning. I know the information is necessary; I am so tired of him being poked and prodded.

We are waiting for those results; he was tested for Celiac Disease, so maybe somebody can figure something out. Or, perhaps, I just need to stop…take a year off…let him grow and heal and tell everyone to dirty word off.

Sigh.

Medical Issues

She’s Gone, Now What Do I Do?

She's Gone, Now What Do I Do?

She’s Gone, Now What Do I Do?

She’s Gone, Now What Do I Do? Honestly, what am I supposed to do now?  Over a decade of friendship and now, aside from your son and the children, you are all gone.  This ache is deep and my tears flow freely at any given moment.  It is so strange knowing that you are gone because that is not what we talked about.

I Miss You

It has only been a few days but I miss you.  We would chat, most nights, until about midnight about all the things.  I would watch my car detailing videos, mute, and tell you about every detail.  Then, we would discuss the children and what they were doing.  We would fix the world’s problems and now I don’t have anyone to talk to.

 

Always Wondered

I have always wondered is it best for others left behind for a loved one to die quickly or to *know* that they are dying so you can say what you need to.  Honestly, I have experienced both ways and they both suck.  For me, they do.  The ones who have passed well, as a believer, once your eyes shut on Earth, they open in the presence of the Lord.

Instantly

When your loved one dies instantly, with no warning, there are SO many things unsaid.  That last I love you, the last I am sorry, the last smile…when did you hug them last?  For me, it has been 6 mths due to conflict.  I remember the last words spoken.  Furthermore, I remember the last words he spoke to me.  Also, I remember sitting in my car screaming at the top of my lungs just to get out the anger.

Anger is secondary to fear and/or sadness.  My fear was knowing how my husband would react to the words said to me.  My sadness was knowing what the outcome was going to be.  It was an outcome that I never wanted but was necessary in order for my husband to heal.  Yet, the pain that came in the morning was devastating.

A Small Amount of Time

This time, however, I have known of “not feeling well” since February or March.  What started out as vertigo and back pain ended in death.  Something so treatable as those 2 things.  Doctor visits yield Meniere’s disease, possibly.  Could be allergies.  Maybe it is stress.  Go to the chiropractor, get some blood work done, blah blah blah.

Those things led to not being able to keep anything down and losing weight.  Energy waning.  Speech slurred a bit.  Upset stomach and passing out.  She was “forced” to go to the ER where they said, “your electrolytes are low and you are dehydrated.”  Well, let’s pop in an IV and get that up.  For a moment, she was better.

Until She Got Worse

That moment was fleeting and we all tried to convince her to go to the doctor again.  This time they did x-rays, co-vid testing, and blood work.  There were bacteria in her bloodstream.  I remember her saying that.  Then she said, “good news, I don’t have covid!”  A sigh of relief.

Then silence.  She said, “but they found a mass on my pancreas.”  My heart went into my throat and I asked if it was cancer.  She said she did not know and she had an appointment with an oncologist on October 7th.  This was the day after her 61st birthday.

When I Got to Her Place

I walked in and there laid a shell of the woman I was used to seeing.  She had lost so much weight and was so jaundiced, I knew that this was serious.  I walked over and laid my head across her chest.  She patted my head and said “Brandi, I’m going to fight this.  It’s going to be okay.  I’m too mean to die.”

I snuggled up with her on the couch and we talked about all the things.  Once again, we solved the world’s problems.  I came by almost daily to check on her and the children.  At night, I would call.  Then she went to the doctor on the 7th…she said they called in hospice.

The Next Day

I came over and we started talking about other things.  Things neither one of us wanted to talk about.  Funeral homes, flowers, plans for her grandchildren and son.  She kept saying that this was all pointless because she was going to get a second opinion and fight.  This woman fought to the very end.

Most days she would ask me to “take her feet apart.”  AKA rub her feet because that felt SO good.  Then she would want me to play with her hair.  Somedays, I massaged her stomach because the swelling was so much that she said it helped her feel better.  Other days, I would just curl up next to her.  Sometimes we would nap and other times, she would nap and I prayed.

The Night at the ER

She finally could not take the pressure and swelling of her belly.  So, she asked me to call an ambulance just to have her checked.  They got there and the stress of moving her caused her to pass out.  We all thought she was gone and rushed to the ER.

Her son and I got there before the ambulance.  They wheeled her out and she cut her eyes at me and waved.  I crumpled in the parking lot.  It was like all the air being let out of a balloon.  Her sisters were there and we all rushed in.

The Beginning of the End

I knew that night, that she would be gone soon.  As I sat by her bed watching her breathe, we talked again.  She talked of her salvation, her husband, and her daughter that died before her.  David died 5 years ago of cancer and her daughter died 2 years ago by a choice that was horrific for her family.

She said they were standing up there going “oh hell, here she comes!”  I told her there was no swearing in heaven.  We both laughed a bit and then the topic got more serious.  She knew there was no fight left.  It was a matter of time and that time was up to God.

Final Words

She asked what would happen to Steve, her son.  Then we talked about Lexi, her granddaughter.  Next, we talked about Austin, her grandson.  Sierra, the precious girl that lived with them and expecting Donna’s great-grandson (whom Donna named).  She talked about Kenleigh, her great-granddaughter.  We got it all squared away.

Then, she looked at me and said “who is going to keep you out of trouble?”  I just sat and cried.  She said, “wanna crawl up in this bed, there is room?”  If I could have, I would have.  I told her we would get in trouble and she said she didn’t care.  She begged to go home.

We Got Her Home

Home.  She was not Donna anymore.  There were moments when she would focus, but we all knew the time was coming.  That time came…my Donna was gone.  Once again, I walked in and laid over her chest, and cried.  I listened to the wails and sobs of her son and grandchildren.  Her sisters.

I haven’t even fully processed it all but today is her funeral.  Everything changes for everyone.  Life never stops moving, does it?  I feel lost and go to pick up the phone and realize, there is no one to call.  Oh, Donna.  It wasn’t supposed to be like this.  We talked about that, remember?

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Powerful Note to Self

This Powerful Note to Self is by a guest blogger who is working through some intense emotions and trauma.  Remember, if you are a survivor of anything….it is NOT your fault!  That can be so hard to believe, especially if you struggle with implicit memories and you cannot remember.

Implicit memories are memories that are from conception to three years of age.  However, explicit memories are from the age of three until the present moment.  Those are the memories that you can pull from and have validation, so to speak.  Implicit memories are ones you just “feel.”  They, to me, are harder to process and reconcile.

Sadly, any type of sexual abuse or molestation is devastating.  It can take years to heal.  Honestly, it may never heal this side of heaven.  That is something that I’ve had to settle within myself in order to process things.  My guest blogger is deep in the trenches.  I am so proud of what she is doing to get help.

Powerful Note to Self

Powerful Note to Self

Note to self

This is not your fault

You are not the one who made the choice

All you did was follow a voice

A voice of someone you were supposed to trust.

Someone everyone else said you could trust

 

Not Your Fault

 

It’s not your fault

that you are scared to love

Or scared to be loved

{Or} that you are afraid to be touched.

 

Stating Truth

 

If anything it is his fault

He chose to hurt you

and He chose to betray your innocent trust

He chose to do the unthinkable

and steal the innocence that you shouldn’t have lost

 

Stop!

 

so stop blaming yourself for his mistakes

you were not and are not at fault.

You didn’t make those choices

So stop claiming it as yours

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I Am Broken

I Am Broken

I Am Broken

I am broken

And I am not normal

I am not who I want to be

 

Instead, I am the one thing I have been raised to not be

The one thing that will make me lose people close to me

I am not who my parents expected me to be

Also, I am a disappointment in their eyes

I am a disappointment in my own eyes

 

Struggling

 

I know it is wrong

Sadly, I know its not meant to be that way

I have not chosen to feel this way

It just happened

 

I have actively fought it

Honestly, I would rather not acknowledge it than admit to it

I don’t want to talk about it

And I don’t want to act on it

 

Normal

 

All I want is to be normal

To be who I was meant to be

Not who I have become

By choice or not

 

I hate myself for my feelings

I would rather just ignore it

Then deal with it

 

I am not normal

Sadly, I am broken

I AM NOT OKAY.

But one day I will be.

What God Says

God says He loves us.  He sent His son to die on the cross for us.  When we come to Christ, He throws our sins as far as the East is from the West.  Also, He says that Satan is the Prince of the Earth.  He comes to steal, kill, and destroy us all.  We have free-will and it is a giant butthole.  God will not supersede free-will, though He can at any moment.  He loves us and that is enough!

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Depression is Gray and Black

Depression is Gray and Black

In this piece, Depression is Gray and Black, my guest blogger discusses what depression looks like to her.

Depression is Gray and Black

 

Depression 

Is a dark and twisty place

It’s when your inner thoughts are gray and black

There is no light 

There is no white 

Just gray or black

 

The gray is sad but bearable thoughts

This is where you look back at what’s wrong

 grieving the way you handled it

Wanting to do something to change it but can’t

 

These thoughts I think are easier to voice 

To seek help for.  Ask someone to hold you accountable

To try and continue your life 

 

Which is Worse?

 

The black well that is the worse 

The dark and the bleak 

These thoughts are much more dangerous

 

These are the thoughts that keep you imprisoned in your mind

Keep you in bed for days 

Give you the feelings of why even try?

 

These thoughts are almost impossible to voice 

The darker the thought the harder it gets to talk to people 

The harder it gets to seek help 

And the harder it is to continue anything in life

 

The In-Between

 

Somewhere between the gray and black, there is a turning point

From being sad to wanting to crawl under a rock and die

I’m not sure where the begins

I just know that’s where it ends.

 

But surely there is a way to continue life looking towards something 

Instead of looking back at the past 

If you can get there that’s when you can see a light

It starts off small almost like a dot

 

Finding the Dot

 

For me trying to find that dot is the hardest part 

Trying to find something worth looking for the dot.

But once I find it I plan on holding on to it.

 

Because the dot will eventually grow 

It will become the light that I seek. 

I just have to hold on a little longer. 

And keep looking ahead.

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How It Began

My guest blogger today talks about How It Began between her and her “first” boyfriend.  In it she reveals the emotional abuse, manipulation, and pain that she endured during the almost 3 years of dating this boy.

How It Began

This is Something That is Considerably Difficult for Me to Write

I still have not been able to let it go after all these years. But I feel like now is the time to write about what my experiences were like when I was dating someone. I had not been in a relationship (or at least a serious one) until I met him. Online dating is the hip and cool new way to meet possible relationships.  You can talk with random people all over the world.  I was sadly one of the suckers that got sucked into all of the fun profiles and nice looking men.

 

How It Began

 

He showed up in my Facebook messages.  Then he told me that he found my profile on the dating website.  Sadly, he did not have the premium services.  Because of that, he had to message me via Facebook. He was a nice-looking man and I thought, why not? Maybe I should open myself up and see if this might go somewhere. We started talking and we talked online and eventually started texting and calling almost daily for quite a few months.

Eventually, We Met and He Took Me on a Date

 

He was incredibly tall, 6’5 which seemed like a dream come true to my 6’0 tall self. Our date went really well and I invited him to come to church with me the following day. We started dating even though he lived in Alabama and we shortly declared ourselves in a relationship after only dating for a little while. My friends, family, and church family were so supportive of us and our long-distance relationship. It was so hard for him and me to only see each other every two weeks for only two short days. And sometimes I would go months without seeing him because of him working two jobs.

 

The Honeymoon Phase

 

I was in such a “honeymoon” phase that I did not truly see how screwed up our relationship was at the time. Honestly, I made it very clear that I did not want to do anything further unless we got married. I made a choice a long time ago to wait until marriage to have any kind of relations with a man since that is what God says in his Word. After about a year of dating, he kissed me and touched me even though I did not say yes or no. And from there we continued to make poor choices and follow fleshly desires rather than focusing our eyes on God and working on our relationship.

 

Being “In Love”

 

I wanted to make him happy because I wanted to be in love so bad and I wanted him to care about me as I saw in the relationships of my other friends. I had never felt that feeling of “being in love” and I did not see how dangerous it was for me to continue in that sin pattern. Eventually, I told him that we could not continue like this anymore and he agreed to stop. From the beginning that we started dating, I told him that if he ever laid a finger on me that it would not end well for him, which he didn’t but he also treated me in a way that is not acceptable in the way a man should take care of a woman.

 

Manipulation and Emotional Abuse

 

He would yell at me and be overly possessive over me for no reason. I told him that I was considering, not even stating I was actually going to do it, but that I wanted to possibly join a sorority. He freaked out and told me he did not want me to join because I would leave him for a frat guy that was better than him. I assured him that cheating was not something that I take lightly and that I only had eyes for him.

He would yell at me even in front of my family to the point where I had to leave the room in order to stay calm and keep my composure. Yet, I still said nothing because I did not want him to leave me. He would emotionally abuse me and refused to communicate with me when we would fight. I tried to put a bandaid on the issue or smile my way through it and say that we were alright. I refused to listen to wisdom from my church family, my mentors, and my family, especially my mom.

Part 2:  Coming Tomorrow

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Misery Loves Company

Misery Loves Company

Misery Loves Company

Misery loves company they say

But is it the misery the person wants to share

Or are they looking to someone for help?

But instead, bring them down too

 

Is the misery more infectious than the need for help?

Or does the person just not want it enough

Personally, I think I would rather suffer alone

Then to bring a friend down with me

 

I don’t want my friends and family to feel like this

I wouldn’t want anyone to feel like this

Like the whole world is sitting on my shoulders

just waiting for them to make the wrong move.

 

Just Waiting

Waiting for them to slip

Waiting for them to pull someone in

Waiting for them to not be alone

So they will share the misery

 

I don’t want to be infectious with hate

I don’t want to put bad things in peoples mind

I’d much rather put in light and love

 

But where can I start

To get back to that person

That everyone loved to be around

The person that was infectious to laughter

The person that loved others and at least liked herself

 

I guess I should start at the beginning again

And try to learn a new way of dealing with my sin

Instead of storing it away and letting it fester

I need to let it go and pray that it will work out in the end

 

Because I’d much rather love myself and help others

Then hate myself and essentially drown them

I don’t want to feed them the lies that I believe

That I’m not good enough

That I’m not worthy

 

Because we are good enough

We are all worthy of love

And not the misery.

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