Living With a Chronic Illness: The Saga That Never Ends

Agammaglobulanemia; lack of gamma globulin in the blood plasma, causing immune deficiency. Sounds so simple doesn’t it? Sure the name of this particular illness is a mouthful but the definition doesn’t seem so bad. Honestly though, what illness sounds as bad as it really is? You hear about illnesses all the time and they sound awful and hard and horrible to live with, but it’s one thing to hear about it and an entirely other thing to live it day in and day out. You hear about the horrors of cancer, side affects of infusions, the pain of MS, but you’ll never truly know the nitty gritty of the situation until you’ve experienced it firsthand. Before I delve into this I’d like to put a disclaimer out there; in no way shape or form do I wish the realities and pain of a chronic illness on anyone. Of course I don’t expect most of you to know what I’m talking about personally and I never want you to. This is just my way of hopefully explaining a very huge part of my life that I tend to gloss over more than I should. With all that being said, I think it’s time to get started on this massive topic.

When I was first born there were no signs of anything seeming to be wrong with me. I was premature and very tiny, but it wasn’t a huge concern. After all, preemies are born everyday. However, I didn’t start to gain weight like they assumed I would, I actually began to lose what little weight I had. I wasn’t thriving like I should have and I started to get sick very frequently. There were so many near death incidents before I was even a year old. I couldn’t stay healthy for more than a week. All of the signs of something being truly wrong were there and people began to get more and more worried. My mom took me to countless doctors, my family researched, and many doctors were stumped. No matter how many tests they put me through nothing was presenting truly wrong. At this point I was getting sicker and sicker. I would frequently have anything from the common cold to pneumonia to thrush. I was 18 months old when an allergy doctor decided to check my immunity levels. That’s when our world turned upside down.

I think on some level my family always hoped that it was “just a phase” or “I was just unlucky” like so many previous doctors had said. Unfortunately it was much more than that. I was diagnosed with CVID (Common Variable Immune Deficiency) or more specifically “agammaglobulanemia” pretty soon after the tests were taken. It didn’t take much work to figure out what was wrong since my IGG, IGA, and IGM levels all presented at 0. To give you an idea of what that means, I will give an example. There are so many different parts to the immune system; there are the T-cells and the B-cells and every other thing comes off from those two functions. The B-cells include IGG, IGA, IGM, and IGE. These little guys are our fighters. They are our personal body guards. They work 24 hours round the clock to ensure that any germ, bacteria, or otherwise unhealthy substance that invades our body is knocked out. However, my body can’t do that. I don’t have the three main fighters to help me keep healthy and strong like I should be. This makes things complicated to say the very least.

After I was diagnosed things got real. Obviously it was all real before but now we had a name for this ever growing monster that was taking over me faster and faster. Since there’s no cure they put me directly on IVIG infusions which are made up of IGG which is the first responder of the immune system. The hope was that by giving me this I would be able to thrive off those “fighters” to live somewhat of a normal life. I’ve been on these infusions ever since. I’m not gonna lie though, it took A LOT of tweaking to get a system that worked down. Even with these infusions I struggled for a very long time. Up until this year really, I still got infections more often than not. Whether they were a cold, the flu, bronchitis, pneumonia, ear infections, sinus issues, GI problems, or even nerve issues. Basically, you name it and I had it. It took a long time to figure out the correct formula for my infusions too. Should I do them every week or every three? Should I get 20 mg’s or 30?  Should I have them intravenously or subcutaneously? Then there were the doctors, the specialists, the hospitals all over the U.S., and the many trips to the ER. Many people don’t realize that even though we may have a system, it’s not fool proof. It’s a learning process every single day, even after 18 years.

Growing up with this particular illness was quite tricky to say the least. It was very hard to balance giving me a “normal” life and keeping me as healthy as possible. Of course I wanted to go to birthday parties, or go to school regularly, or go to the mall with my friends, but it just wasn’t in the cards all the time. Watching everyone around me thrive and excel and be able to go out and do things was very hard; it still is sometimes. School was always rough for me because I so often got sick from all the germs even if I went for two hours a week. It was an uphill battle for me to juggle school and a social life on top of trying to stay somewhat healthy. Quite honestly I can look back and still feel my heart break a little bit thinking about everything I missed out on.

But, on the other hand, I’ve lived through so much already. I guarantee I would not be the same person I am without this struggle in my life and quite honestly I really do like the person I’ve become. The nurses and doctors I’ve met throughout this whole drama filled life are some of the people that mean most to me in this world. This may sound silly but the Children’s Hospital at my local hospital is like my second home and will always have a huge part of my heart. Without the pain I’ve experienced both physically and emotionally I would not be as strong as I am today. I feel this need to live a full and accomplished life because of the childhood and normalcy I missed out on. The passion I have for everything I do comes from the reality that if something went wrong or one small infection turned into something more, I may not make it. I truly believe the reason I’m so close to not only my mom, but my extended family is because they are my best friends. They stayed home from work when I needed them, took me to the ER at all times of the night, made a room for me in their offices, became my playmates when I was too sick to have one my age, and made every single moment I was given so special. That is something so incredibly unique and I feel beyond blessed to have experienced it. I know if I didn’t have my illness I wouldn’t have had those precious moments.

Though, the one thing that has gotten me through the countless shots, pokes, tests, doctor visits, port surgeries, infusions, and countless other traumatic experiences is my faith in Jesus. Without Him I would’ve crumbled a long time ago. He has been there with me every step of the way. He has held my hand throughout every port access for my infusion, comforted when I get bad news about my test results, given me strength when I’m ready to give up, and helped me process that this is meant to be used for something bigger than me. I’ve never looked at my illness as a burden and I never will. As long as I have it I know it’s for a purpose and I know the Lord will use it in ways I can’t even imagine. The blessings I’ve been given because of my circumstance outnumber the hardships by a landslide. This isn’t to say I don’t have my bad days, because believe me I do. But, I’ve come to realize that there’s always a flip side to everything and drowning in your sorrows doesn’t make what’s real disappear.

Right now I’m doing well health wise. I’m never going to have the full capacity that someone my age does, but I’m doing more than I have in a very long time. My infusions are going well. I still get some side affects from them which include migraines, nausea, CVID arthritis, and some other things, but I can live with it. I’m pushing through everyday harder and harder and sometimes, yes, life pushes back. I take breaks when needed (and mostly when not wanted) but it’s worth it when I feel like I’m actually living for once. I have an incredible support system that keeps me going daily and I have set goals that I will one day accomplish. It’s nice fulfilling dreams that my younger self wouldn’t dare even think of because of the fear of wanting something I thought I’d never have.

Sorry for such a long post and I applaud any person that read the entire thing, but this was a part of my journey that needed to be written. You see, you can’t hear an accurate or full description about my life without my illness. It’s just how it works. I hope this didn’t bore any of you too much but it was something very important to me to include on my blog. This certainly won’t be the last post about my illness, but if you’re coming on this journey with me, it’s just a part of the story we must go through. Thank you all again for reading this long and winded post. I will talk to all of you soon!

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Making the most of my tests at Mayo Clinic in October 2014

15 thoughts on “Living With a Chronic Illness: The Saga That Never Ends

  1. Kaelin B. says:

    I don’t know how you write such amazing words that just melting my heart but at the same time and so happy that I am a big part of your life and you are mine. And I read the whole thing and I am glad that you keep pushing every day of your life.❤

    Liked by 1 person

  2. kai whitaker says:

    nice dude really good info helps me and im sure others see the struggles of a chronic illness. takes courage to put your words out there in the world, and your religious beliefs. keep posting i know it gives me motivation to get through the weeks, and really a different perspective of life. keep writing!

    Liked by 1 person

  3. kai whitaker says:

    really amazing dude, this is great to read about what you have been dealing with your whole life. proud of you for putting yourself out there and sharing your experience and current life. takes courage to do what you are doing, to open your life to everyone, its brave and i respect that. keep writing it really is fantastic.

    Liked by 1 person

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