This isn’t easy.

Today has been such a long day.

I am tired.

I’m so tired.

Thank you, Scharlee and Geneva, for the hugs. Geneva, thank you for grabbing my neck and making time for me, you’re the most gentle soul, and I never want to do life without you. Thank you Scharlee for just holding on a little bit longer and for just holding my hand for a bit this evening. I kind of just needed it, because I’m just kind of a mess right now. Even though I didn’t sit there and tell you what was on my heart today, I needed that hug, you’ve always shown up for me even the times I didn’t realize that I needed it.

I’m not going to try to hide this, it’s really hurting and I’m feeling really guilty about it and I’ve been crying about it every day. So I think I’m just going to lay it out here.

I. am. struggling.

My heart is such a mess right now.

Here’s what happened.

For those of you who don’t know, basically all of last year I was on immunosuppressants for Lupus. Then in November I was approached with the opportunity to be in a Lupus Study for a trial drug. If I was chosen then I would be given either the drug or a placebo. I could receive up to $500 in compensation for participating, which would have been nice, but I wanted to do it because I am all for trying something else. I am all for helping other people feel better and if this I’m the guinea pig so be it.

But.

Yes, there is a but, now . . .

I am not in this study. I am not doing this.

I filled out ALL of the paperwork. I released all of my medical records to this doctor in OKC for this study. But then my doctors released me of my immunosuppressants and I am doing good, I am following the AIP diet (not completely, I’m struggling with it), but I don’t have to go back to the doctor for six months.

I’m feeling better.

I’m feeling good. Yes, I feel like crud . . . I hurt everyday, I’m tired, and I have extreme fatigue . . . that’s just Lupus. But I am good.

I don’t want to start a new year, a new season, feeling gross and possibly suffering from terrible side effects if I’m not given the placebo.

So I decided not to do the the Lupus Study, even though they called me to do it.

I feel so guilty. I feel like a jerk. I keep thinking, “You can do this. You may not feel good. You may get sick, but this isn’t about you, it’s about helping other people down the line.”

But I am not doing this.

I really didn’t even pray about it and I feel that’s why I am so conflicted about my decision. But that’s what happened. Yes, I am a flawed being.

I was so ready to do it – then my dr took me off that medicine and I just decided on the spot that I’m ready to try to feel better and to live a little. I also have some pretty beautiful little girls I need to take care of and one of them that I have to take to a lot of places for appointments. The oldest and my husband don’t know what a home cooked meal is. Maybe not being on this medicine, I’ll do that for them and it won’t be cereal and spaghettio’s and sandwiches for dinner.

I could have done it.

Several years ago I got a call, concerning a donor sample I’d given. I was the MATCH! They needed me for a blood marrow recipient! I was so excited and ready for the hip pain and recovery down time (this was before my lupus diagnosis.) I was ready to go, they gave me a run down of when to be there and what to wear and etc . . . they had to call back and cancel last minute. This 60-something year old woman who HAD to have my (someone’s) marrow immediately: there was an issue with insurance. They had already begun to do this hardcore med with her to prepare her body . . . we were ready to go.

They called back and cancelled and in tears said if something changed with her insurance situation she’d call and let me know. The woman . . . well I don’t have any idea if she got hooked up with another match or not. I know she didn’t get help from me and that’s always on the back of my mind.

But I am not doing this.

I am not going to start 2019 feeling terrible.

I’m not going to be sick or potentially really sick from another medication because I NEED to take care of my little ones.

I am not doing this.

But it’s breaking my heart.

I feel terrible. Like what if this is the “great breakthrough drug” and I needed to be a part of it to help others. I feel so terrible. My heart is up in a roar and it’s oh so hard and I don’t even know how to explain it.

Anyway. This isn’t easy. You may think, wow, that’s nothing. But it’s so much. It’s consuming such a big part of my heart right now because I feel so guilty for choosing to not go ahead with the study. I feel selfish for not doing it and my heart is aching.

Please pray for me.

Grace and Peace

“For we live by faith, not by sight.” 2 Corinthians 5:7