I always tell myself I’m going to blog once a week, once a month…. then life happens and here I am with my almost Bi annual blog. To be honest, a year filled with health issue after health issue isn’t the most fun thing to write OR read about. So I avoided it.
My birthday was this past Sunday and reflecting on the year and having a conversation with one of my best friends this morning, lead me to wanting to share what my diagnoses has brought me this year (in addition to the sweet plasma baby bellies!)
In May, I shared some of the process, but I will explain my disease how I explained it to my 10 year old (because Google is scary and confusing!) When you get sick, your immunoglobulins (Goblins, as we call them) have the job of remembering every virus you get. The next time that virus comes into your system, the Goblins alert your immune system to attack it bc they know it’s bad. This is why you don’t get the exact same virus twice. I have a bunch of Goblins, but they don’t work…. in fact, they all have “Alzheimer’s”. None of them can remember anything, so when a virus comes, they can’t alert my immune system. This means I get sick with the same virus over and over and over. It also means I get MUCH more sick than the average person because my immune system isn’t alerted to fight it. A virus such as influenza, which is a new strand each season, can be deadly for me.
Last March, I started infusions of IgG which is the main “Goblin”. They give me plasma which gives me the donor’s “memory” of virus’. Then my own immune system can be alerted a little more quickly so that, in theory, I don’t get as sick. I am able to do my infusions at home. I have a family member or friend come hang out with me in case of allergic reaction, but I’m now able to stick myself with all 4 needles and do the actual infusion myself. I won’t get into the actual process, because that’s not what I want to focus on. Just to summarize it, though, it sucks. LOL
I went through RCIA to convert to Catholicism 2 years ago March. Ironically, it was 1 year ago in March that I started my infusions. I know, logically, that I am incredibly lucky because there are so many others who have it MUCH worse than I do. But, I’m human, and sometimes those “feel sorry for myself” days creep in and I allow myself (with the help of my amazing support system) to just have a moment to feel it. To cry. To be mad. To ask “why me”.
For those of you who have only known me as an adult, you may or may not know my history. On May 5, 1999 my boyfriend was killed in a car accident. I was 18, a high school senior about to graduate. I can’t describe the pain I was in or the emptiness I felt. I had no idea who I was without him and to say I was lost is an understatement. I suffered with PTSD and still do to an extent. I will most likely never ride with you as a passenger in your car. I am afraid of everything I can’t control including the weather, sickness, driving…. If you’ve ever seen my house, you now know why every item is set a certain way and I know if you’ve moved it. It’s part of needing control.
Fr Dan is the priest I admire most. Every time I see him, he gives me a big hug and tells me how special I am to him and brings me to tears instantly. I have a bond with him that is so incredible. In a conversation one time about me needing control, he pointed to the Sacred Heart of Jesus painting hanging above him and told me to focus on that. At the bottom of the print it said “I trust in you.” At the time, I knew it was what I needed to do, but I clung to that control like an armor anyway. It had helped shut out people and anxiety for 19 years and was hard to think I would be ok if i gave any of it up.
Now enter CVID! The diagnoses with no cure! The disease which terrified me to paralysis the second I heard there was already a confirmed case of Influenza in September this year! The disease that medical experts tell me I will suffer from for the rest of my life. What a chipper thought, right?? LOL It wasn’t until I tried to really vocalize how I feel this morning that I was even able to piece together and process my thoughts for the very first time since diagnoses so here it goes…
I am blessed. Not only am I incredibly thankful for plasma donors and the treatment I receive, but I’m beyond thankful for the people that have been placed in my life to guide me to where I am now. I can’t control a single sliver of this disease. I can’t control my lab results (that have stayed outside of the normal range every 6 weeks since I started my infusions.) I can’t control what germs I’m exposed to despite my best efforts. I can’t control my body’s response time to a virus or do anything to make it work better. I can’t change the fact that my life is at risk every single time I am exposed to Influenza or pneumonia. But then I remember I’m not supposed to control any of it. I’m supposed to trust.
You know Oprah would say “Ah ha!!” at my new realization that sometimes you’re given tough situations as an answer to your prayers. Although I wish God had just said “Poof!” And made my control issues go away, I feel I was given this disease to really learn to let go. To find peace in scary situations and to have the courage to blindly take steps forward when I can’t see my way. To trust that I’m taken care of even when I can’t see the “why”.
So tonight, I feel peace. I have great friends who laugh with me, cry with me and most importantly pray for me. I have a husband who is living “in sickness and in health” and literally carries me when I can’t stand. I have family who loves the funny me, the sick me and the scared me and knows when I need space or need a hug. And I have a God who heals. Who gives me comfort when I have fear and who gives me hope, and peace. Who is teaching me to trust Him when I am my strongest and especially when I am at my weakest.
So, as I close…. remember to wash your hands (😂) and if you see me with a bedazzled mask to keep away the germs, know I’m counting down the days to the end of influenza season! If you have a list of people you pray for, I would love to be an addition to your talks with God. 💜