Welcome to my CaringBridge website! I am using it to keep family and friends updated. I hope this will be a resource for prayer, as well. More than anything, I want to share my journey in an authentic way. I appreciate your support and words of hope and encouragement. Thank you for visiting!
Below, is a history of how I got to where I am today:
I have been sick my entire life. From a very young age, I was plagued with ear infections, allergies, bronchitis, sinus infections, UTIs, tonsillitis, asthma, pneumonia, and almost every virus that came around! To complicate matters further, some of the vaccinations that I received, didn't take. Even puberty presented its own share of problems for me. I underwent ovarian surgery at the age of 11 and added Stein Leventhal Syndrome to my list of issues . I needed hormones, antibiotics, allergy meds, iron tablets, and inhalers routinely. As a young person, I underwent sinus surgery, had tubes inserted in my ears, and had my tonsils and adenoids removed in an effort to decrease constant infections. I also had urology surgery that would make me less susceptible to bladder infections.
When I was 21, I began to experience blood clots. Initially, I had phlebitis but I eventually developed a couple of DVTs. One DVT took a serious turn when it broke off and traveled to my lung; resulting in a small pulmonary embolism. Through genetic testing, it was discovered that I have a familial blood clotting disorder called Lyden Factor V that puts me at constant risk for blood clots. Once that diagnosis was made, I began taking medications to prevent clots.
I became very sick in 1997 and knew that something major was wrong with my body. I ended up seeing multiple doctors; begging them for help. Finally, I found 2 doctors who were determined to find out what was wrong with me. In 1999, they (each independent of the other) ordered lab work for Lupus profiling. That is when I had my first positive ANA tests for Lupus. Lupus is an auto-immune disease where the body attacks itself, causing major tissues and organs to break down or be under stress. It wreaks havoc on the blood and lymph system, too. It can also effect other parts of the body. As a result of a severe Lupus flare, I experienced nerve damage and lost the hearing in my left ear. I was diagnosed with Otosclerosis and have worn a hearing aid ever since. Lupus (SLE) has been an extremely difficult disease for me to understand and fight. Some of the Lupus flares I have experienced have almost destroyed my body. I suffer constant joint pain, inflammation, migraines, and a host of other issues on a constant basis. I began an aggressive treatment regimen that included Plaquenil (Hydroxychlor) as soon as I was diagnosed. There is no cure yet for this horrible disease. I hope that you will join me in praying that one will be found SOON!
In 2014, my body went into adrenal failure. This was believed to have happened due to cysts on my thyroid, along with extreme anemia and massive amounts of steroids that I was taking to treat Lupus and pneumonia. This adrenal failure sent me to the ICU for a week of cortisol iv treatments. To date, those have been the most intense treatments of my life! Now, my cortisol and hormone levels have to be continuously monitored. I will probably need hormone medications for my entire life. Eventually, I was diagnosed with Hashimoto's Disease, which is a secondary auto-immune disease to Lupus. Hashimoto's Disease is characterized by the body attacking its own adrenal system.
While I was battling constant infections, auto-immune complications, anemia and blood-clotting issues, I was also constantly dealing with annoying lymphatic cysts. I have had procedures/surgeries/biopsies performed on locations all over my body. The most intense was the procedure on my pancreas. To date, I have had over 30 cysts/tumors removed. None of them have been malignant. But, they can cause pain and are always "a scare" when they are discovered on a scan. They have all been biopsied and the results have come back indicating that they are lymphatic; benign. I have also had some pretty intense female problems which resulted in 3 major surgeries. All in all, I have undergone 13 surgeries, had 13 iron infusions, cortisol infusions, hundreds of allergy shots, loads of antibiotic injections, multiple MRIs, cat scans, blood draws, ultrasounds, and doctor visits! The point is NOT for you to take pity on me. I simply want you to understand that I have ALWAYS been sick. I have ALWAYS taken medicine. I have ALWAYS felt like something was terribly wrong with me. Why couldn't I fight things off like a normal person? Why did my body create cysts? Why couldn't I make blood? Why did my body want to attack and destroy itself? There was no good answer for me until...
It was the holiday season of 2017, and once again, I found myself sick with another sinus and bronchial infection. This time I was particularly wiped out. Chip and I had just completed a long training session and internship for our new business. We had been out of town for several weeks. I was incredibly exhausted. I was also trying to get back into the habit of working full-time and learning a new job. But the biggest source of fatigue for me was emotional. You see, my dearest friend was dying. My first week in our new business, she was being moved into hospice. I was by her side, daily. I was trying to work as hard and fast as I could so I could rush to hospice so that I could sit with her. Eventually, I just stayed stopped working so I could be with her at hospice. I also wasn't resting at night because of the emotional aspect of the situation. That combination of lack of rest, stress, profound grief, and illness created a perfect storm for my body. I was diagnosed with pneumonia right after Tarin died. But this time the situation was different, I couldn't get it cleared up! I was on various medications for several weeks. Nothing was working. I was not getting well. It became obvious that something more serious had to be at play. My doctor sent me to an infectious disease specialist. That doctor ran a wide range of tests. That was when we finally had an answer to the questions that had plagued me my entire life. I was given the unexpected diagnosis of Primary Immunodeficiency (PI).
The specific type of PI that I have is considered to be a rare disease. It is known as CVID or Common Variable Immunodeficiency. The doctors told me that I have had this disease my entire life. Unfortunately, there is no cure for CVID. The main component of this disease is that I don't make enough immunoglobulins (IG). Immunoglobulins are part of the plasma in the blood that our bodies use to fight off disease, bacteria, fungus, and infection. When the body can no longer produce enough IGs, the body becomes susceptible to widespread disease and infection. Even something like a common cold can turn deadly if the body's immune system cannot fight it off. Currently, there is no medication that can be ingested or injected into the body that prompts it to create more immunoglobulin. It has to be transported into the body through plasma by way of an infusion. The infusions provide the body with a temporary supply of immunoglobulin. Since I am not making my own in a sustainable way, I rely on a new, healthy supply of IGs (through plasma infusions) to keep my resistance up and my body in "fight" mode. There are different ratings for this disease. Currently, I am at the critical level. That means that I have no other recourse to protect my life, other than undergoing treatment with IG infusions. The critical status also means that my name has moved towards the top of the plasma list. For the past several years, there has been a worldwide shortage of plasma. A lot of patients (like myself) have had to delay treatment, until we made the critical list. In November of 2019, my status was moved to critical and I began the process of application for insurance approval to receive treatment. With the updated status, my insurance approved my treatment and a whole new journey began...
My first IG infusion was January 27, 2020. My current protocol is that I receive IG infusions every other week. The infusions are simultaneously administered into my stomach via 3 iv needles. The infusions have a lot of side effects and I have a fairly lengthy recovery time after each one. The mental and emotional battle has been as difficult as the physical one. My goal is to do the treatments for as long as I can. I am still being treated for constant infections, Lupus, and all of the health issues that I have in addition to the CVID! Yes. It is overwhelming! At some point, my insurance will max out and/or I will be too sick to continue. OR.... I will be healed! My constant prayer is that God will provide me with healing through a miracle, a new medication, or a new treatment. My story is still being written. There are still some twists and turns ahead. Regardless, I know that the ending is definitely a "happily ever after"! I hope you will join me on my journey...