03/28/2026
🌻UPDATE🌻
I know I haven’t posted in a while and you all have to be wondering where I’m at in my journey. It took a while and a lot of specialty visits, back-and-forth to town, phone calls to check on referrals like it were like a full-time job. I have spoken in great detail about my new care team who have done so much for me, a couple of weeks ago they sent me in to get a port placed, not only for my upcoming IVIG Therapy but anything I would need for this journey.
We have waited on this Therapy for months and months jumping through hoop after hoop nobody understood why it was so hard for me to get it. I had the right diagnosis… friends, it was so hard for me to get it in the beginning because God was not ready to open that door yet let me tell you how I know why.
Megan, my new IVIG Nurse, over the course of our four days together, very long,drawn out, painful days mind you… Megan and I were getting to know each other when she began to tell me how this opportunity literally just fell in her lap. She told me that she works at the Cancer center on airport, doing infusions, which is exactly where I spent the last few months with my dad during his cancer journey. Which is exactly where my new primary care doctor is. She said she does not work outpatient at all and that I am her only patient. She works PRN at the cancer center and now she will spend every one of my infusions with me 3 to 4 days 8 to 12 hours of infusion in my home… it gets better… Megan had no idea who I was, indeed called her and asked her if she wanted this job. My name has been bouncing all over the Medical field for the last year. There’s not many offices in the region that do not know about what’s going on with me. she blindly took the job. 😉
I don’t think it was by chance at all that I fell into Megan‘s lap. I think God had a plan from the beginning, actually I know He has. I’ve been seeing it from the start. Would I love for this to be done and over with sooner, yes. Is this the most pain I’ve ever been in in my entire life yes. But had I not have endured it I wouldn’t have experienced all of the things that I have through this last year, the prayers with random people I’ve never met, the people telling me that my faith through this journey has convicted their own hearts and brought them closer to Christ, I’ve had more Jesus conversations than you would ever imagine. Megan’s first day here, when she was packing up she asked “is there anything else I can do for you before I leave ? (As if 8 hours in Antarctica AKA my bedroom because I stay burning up.) I asked her if I could pray with her to which she responded, “if you will lead”… My relationship with God has grown, my husband’s relationship with God has grown, my children, my in-laws, my friends, my church, family, my actual family, and far beyond that. God most definitely have a plan and He is not done with me yet!
This treatment is HARD!!
This treatment almost BROKE ME!!
This treatment is TERRIFYING & EXCITING!
What we did not anticipate was that just 2 weeks before my start date I would be put on a new trial drug, hardly anyone knows about it yet and it was another shot in the dark to get me out of pain… guess what the #1 side effect was of this “trial med” MUSCLE SPASMS!!! This took my already horrendous muscle spasms from my lip to my toes and turned them in to the incredible Hulk spasms!!! I am talking my full body locks up and every muscle in my body every organ every nerve all just comes down on me at one time and brings an overwhelming amount of pain to my entire body anywhere from 30 seconds long to a minute or longer…. Guess what happened after starting IVIG therapy? I got a humongous loading dose, the course of those four days and nights I had my “Hulk smash“ spams somewhere between 30 and 40 times WHILE PASSING OUT NEARLY EVERY TIME!!! 
I am exhausted, I’m drained, I’m over the moon excited, I’m trying not to live in fear over these side effects, and I will continue to give all glory to God. If you all could just be praying extra hard for me over the next couple of weeks as I get use to what these side effects are going to entail. Magen said I’m a WARRIOR she said that was a very heavy dose of IVIG and I did so good with it!
Praying for nothing but uphill from here! I’ll keep you all up to date !!
