Faith Over Fear - Carrie Jean

04/08/2025

I haven’t posted in a while about things so I wanted to do a full health update… a lot of things have changed!

For the past couple years or so I’ve been having intermittent severe nausea and vomiting. We thought it was just a flare in my Eosinophilic Esophagitis, unfortunately we found out that was not the case. A little over a month ago I was diagnosed with moderate delayed gastric emptying or gastroparesis. In short when I eat the food stays on the top portion of my stomach for longer than it should. We are currently trying to make changes in my diet to help my symptoms and nutrient absorption.

In addition to that, I have been battling severe TMJ disorder for a long as I can remember and the joint on both sides have started to degenerate significantly worse in the right side. In December, we decided that I will be having a total joint replacement on the right side. Due to the custom creation of the joint we had to schedule surgery for April 10th. I cannot begin to explain the pain I’ve had in the past year causing me to be very excited about the thought of stopping that pain soon.

There are a few other changes/additions we are making to my medication regimen and hoping to see a decrease in the negative side effects.

Please pray that my surgery goes well and that I see a major decrease in my pain in the next couple months. Also, please pray that we’re able to schedule the left side replacement before the end of the year.
Lastly, please pray that the needed change to a liquid diet helps the gastroparesis.

This year will be an uphill battle but definitely hoping to see some results…

I love every single one of you and am so grateful for everyone’s thoughts and prayers!!

04/15/2024

I’d love to tell you how big and mighty my God is…

A year ago, my health was the absolute worst it’s been, I was literally fighting for my life. My blood work showed that my white blood cells were attacking and destroying most of my body. I asked every single person I met to pray for me, even my doctor and PA have been praying for me.

In December, my doctor and I decided I wouldn’t wait any longer for insurance to drag their feet and I started on the samples of a medication called Nucala. My insurance finally approved the medication the end of February.

Last week I got blood work and to say speechless would be an understatement. In 20+ years my bloodwork has not been this good. For the first time I can remember I was able to spend multiple hours outside in spring time and not have my allergies go crazy.

And today, I am leaving for Scotland with the best job I’ve ever had. Yes, I am still very ill and have to be extremely careful while overseas. But a year ago I truly believed something like this would never be possible.

My God is bigger than any fear or illness I could ever have!!

01/12/2024

Finally was able to come home today from the hospital. Still feeling pretty crummy but definitely better than I was. Thank you everyone that has been praying for my recovery! I appreciate it more than you realize. Please also pray for Monday as I have to get my next dose of injections for my hyper eosinophilia. With all of the meds from this past week I don’t want to get sick from that too.

Love yall!!

01/10/2024

01/07/2024

Good evening family and friends, I am currently awaiting a bed at Christiana Hospital due to Covid. Please pray that they are able to prevent any severe symptoms the same they did last time.

12/29/2023

Not Carrie Conn in the emergency room for yet another reaction. This time I had a shrimp tortilla and I had shrimp last night so I know it wasn’t that. But praying I quickly recover so I don’t have to stay in the main hospital tonight…

I was checking my face as the reaction progressed… you can see the redness and swolleness increase through the pictures.

12/17/2023

Good evening and happy Saturday!!

I am doing my subcutaneous immunoglobulin so I thought I might share a little about that, why I use it and what it does for me.

I have a primary immunodeficiency known as common variable immunodeficiency. That does not mean that it is a common disease it actually means that I am deficient in the same variable element in my blood. For me that happens to be immunoglobulin or IGG.

A little about primary immunodeficiencies:
Your immune system keeps you healthy by fighting off germs. But people living with PI have an immune system that is not working correctly. For people living with PI, infections may not go away or can come back often, even with the use of antibiotics. Infections may be common, severe, long-lasting, or hard to cure. Appropriate therapy can prevent complications associated with PI, such as frequent infections, fevers, long-term permanent organ damage, and premature death.

So what do I do to keep my IGGs in a range that I am able to function and not be sick 24/7? I do a medication called Hizentra, this is a subcutaneous immunoglobulin. This is just like it sounds subcutaneous, so I inject 4 tiny little needles into my stomach fat and the SCIG goes into my blood stream and goes to work.

As far as we know I have had this immunodeficiency since birth, however because it is so rare I wasn't tested until I was 25 years old.

My weekly infusions have been a burden and a blessing, I have to do it every week but it has allowed me to be able to see another week.

Tonight I am grateful for my mom and brother. When things are truly difficult we are able to face it head on and keep on pushing.

1 Timothy 5:8 But if any provide not for his own, and specially for those of his own house, he hath denied the faith, and is worse than an infidel.

12/13/2023

Good afternoon, I have been asked a couple times about the new medication and how I am feeling. I have been trying to wait to see how I would feel once the side effects wore off, but I am still having some issues but thankfully not nearly as bad.

The side effects for the new medication Nucala were pretty intense for me. Back pain (that I am still dealing with intermittently), exhaustion, head and body aches and just overall feeling just like I was hit by a bus. I keep telling myself every time I want to complain that I am blessed to be given the opportunity to take this medication and that if I am in pain that means I am still living.

Please pray that in a couple months when we do my follow up bloodwork that my eosinophils have gone down and that the side effects lessen.

I am beyond grateful for the ability to still work (from home) which was truly a blessing from God.

1 Thessalonians 5:18
“In every thing give thanks: for this is the will of God in Christ Jesus concerning you.”

Today I am grateful for my family and friends who support, love and pray for me.

12/13/2023

Just wanted to show everyone an example of what histamine and eosinophils do to my body… the redness and swelling are just because I had tomato sauce.

I know I’m smiling in the one but I almost look like a different person.

12/08/2023

In November of 2022 we noticed that something called eosinophils were elevated in my blood, higher than they normally already are. However, do to some of my other issues this isn't a horrible red flag but needed to be watched closely. Fast forward to March and we noticed that they were still quite high and climbing, so my immunologist/allergist decided that we need to be more diligent in watching the numbers so we checked them again in April and May and still they were quite high.

For reference the average person (with allergies) has normally 100-500 eosinophils/mm³ in their blood, my levels were/are around 2,700 eosinophils/mm³.

At that point we decided that I need to get some more testing so that we could confirm a diagnosis and get treatment going. After multiple rounds of bloodwork, treatment for a parasite and a bone marrow biopsy we were able to finally give me the official diagnosis of Hypereosinophilic Syndrome.

Hypereosinophilic (hy-per-ee-o-SIN-o-phil-ik) syndrome (HES) is a group of blood disorders that occur when you have high numbers of eosinophils — white blood cells that play an important role in your immune system. Over time, the excess eosinophils enter various tissues, eventually damaging your organs.

Because of my various other chronic illnesses, my doctor and his PA went to an immunology conference and spoke to many of his peers about my case to see if anyone had any ideas how to treat me properly. In late June we decided that I will be starting the process of getting me on a medication targeting the eosinophils called Nucala. Unfortunately, due to the rarity my insurance company has denied our request multiple times requesting me to try long term high dose steroids and/or chemotherapy. Because of my immunodeficiency and lack of spleen neither of these are a safe option for me.

One of the main problems with having multiple rare chronic illnesses is that insurance does not completely understand the correct way to treat you and it can take many months to get them to approve of life saving medications.

For me hypereosinophilic syndrome has caused almost unbearable symptoms at times. I have night sweats, fevers, muscle aches, stuttering, ticks and severe exhaustion. We also believe that I have new heart damage due to the eosinophils. Because of the severity of my symptoms and damage my doctor decided they would no longer be allowing me to wait and got multiple doses of this medication (Nucala) from the pharmaceutical company.

On Tuesday of this week (December 5, 2023) I took my first does of Nucala. Our current prayer is that the side effects lessen and that it lowers my eosinophils quickly. We are also praying that the insurance company approves it no later than February as my doctor's office is able to get my next dose in January with those samples. I cannot begin to explain how much I love and appreciate my doctor and his PA. She even told me on Tuesday that she worries about me and prays for me often. Its great to have a provider that cares.

So they will be what I am grateful for today. Dr. Gregory Marcotte and Shannon Hogate at ENT and Allergy of Delaware. They have done more than any doctor has ever done for me and they have honestly saved my life.

12/07/2023

So after a lot of thought and prayer I have decided to share my health journey publicly. I once heard if you allow people to show up they will, you just have to tell them how. I’ve decided to try to do that.

Please bear with me through this, as speaking and writing properly are not a strong suit for me. 😊

I will start from the beginning and add from there…

There are people in the world who came as surprise, I was not a surprise. I was a prayed for, pleaded for, begged God everyday day for rainbow baby. In wonderful Carrie Conn fashion I was born a month early, upside down and face down. My dad used to say I was born telling the world to kiss my butt.

I was born with hip dysplasia and had to wear a special type of harness for babies called a Pavlick harness. So from day one I’ve never been or felt “normal” or “average.”

Growing up, I can remember being sick with ear infections and other colds all the time. I can also remember stomachaches so bad I’d beg my mom to take me to the emergency room. We estimate 30+ times going to the ER before I was even 18. I was diagnosed with hypothyroidism in elementary school but that did not answer for most of my symptoms. Thankfully, I had a mom that knew something was wrong and wasn’t going to stop until we figured out what was going on.

After quite a bunch more emergency room trips and hundreds of doctors appointments,I now have a slew of severe chronic illness diagnoses. With 2 exceptions all of these could have been found if I had been asked the correct questions, if they had ran the correct tests or even just did a little more digging. Education and awareness truly does save lives, so that’s why I am here sharing my story with all of you.

I know that was a lot to read, and if you’re still here thank you!! If you are interested to know everything that I have, they are listed below!!

Eosinophilic Esophagitis
Ehlers Danlos Syndrome
Hashimotos Hypothyroidism
Postural Orthostatic Tachycardia Syndrome 
Common Variable Immunodeficiency
Sarcoidosis
Hypereosinophilic Syndrome
Severe Food Allergies
Polycystic Ovarian Syndrome
Chronic Migraines
Allergic Asthma

I plan to end every post with something I am grateful for… today I am grateful for a warm bed and home on this chilly chilly night. ♥️