Let’s Talk about Chronic Illness

Merry Christmas, friends!

I know it’s been a while, but life has been happening and I’ve barely been able to keep up. Anyone else? Yah, 2019 has been rough! Last December I moved to Nebraska. It was a crazy year in the big city, but God has brought me home. Some of you know I had to end my job in Nebraska and move back home while I await DNA test results, but I haven’t shared too many details. Today I want to share because there may be someone else out there that is going through something difficult and needs a little bit of encouragement. If that’s you (or if you’re just curious), keep reading!

I had a few scary episodes of a very high heart rate and very low blood pressure. As in, so low I should have been passed out. Thankfully I never did, but I was dizzy for a few months and couldn’t drive. I still check both every day and although the BP sometimes dips too low and the heart rate sometimes spikes too high, they’re both a lot better. I’m able to drive again, though my concentration isn’t there to drive too far.

I’ve also had a low grade fever since early fall. I also check that every day and it’s occasionally normal (which is still high for me), but typically between 99 and 100.5 degrees. The other major thing I’m still dealing with is parasites. I know it’s gross and I’m sorry, but I’m more sorry that I have to deal with them! I’m over the nasty cold I caught, but I’m still coughing a lot of junk out of my lungs each day. Thankfully it’s coming out though, that’s a praise. I feel tired all the time. Even when I sleep 12 hours I feel like I could get up and take a nap. I don’t have very much energy and after being out and about I crash hard.

Because my body doesn’t respond in a typical way to, well, anything, we decided the next big step is to get my DNA checked to hopefully figure out why I am the way I am and if there is anything they can do to help my body heal. I’m still waiting on those results (it’s been FOREVER!). In the meantime, I’m dealing with my body prioritizing what it wants to take care of. Between my brain giving all of it’s energy to keeping my organs functioning (and ignoring my skin because it’s not as important) and the parasites stealing my nutrients, my body isn’t absorbing minerals like it should. My skin is really suffering that’s what’s annoying me the most right now. It’s dry and I have some scaly patches I’m giving extra moisture to. The lymph nodes in my underarms are detoxing something which is causing a painful, itchy rash that’s quite unpleasant. But my poor scalp has bore the brunt of this current situation. It’s so dry that it’s flaking like a snow globe – and it’s not pretty! I have chunks that are peeling off and taking hair with it. It’s not just embarrassing, it’s starting to get painful. When I touch my head it feels like I have a hat on or something, it doesn’t feel like I’m touching my own skin. This thick outer layer has been getting tighter as it gets drier – I feel like it’s giving me a “natural” face lift! LOL!

My pretty new haircut

I needed a haircut and wanted to have someone check out my scalp to see what was going on up there and if there was anything I could do to make it better. I went to my hair stylist, Marissa at MJ & Company Hair Parlor. Sweet Marissa checked things out, gave me tips on how to do a moisturizing treatment at home, and didn’t make me feel bad about what was going on up there. Bless her! She cut and styled my hair so nice that I went home feeling pretty instead of feeling like crying. Thank you, Marissa, for your kindness. Last night I took a hot shower then mom helped me rub castor oil into my hair. I put a shower cap on and went to bed. This morning I rinsed out as much as I could (you guys, that stuff is so thick and sticky! Yuck!) but I didn’t wash it. I have my head wrapped in a turban towel today to keep the sticky off my clothes and the furniture. I’ll keep it wrapped tonight and then wash it all out in the morning. Hopefully this will give my scalp a good dose of moisture and it won’t hurt and itch so much. I have to admit, it’s not just the discomfort of the skin issues that’s bothering me, it’s for vanity sake too. I mean, who wants to be a walking itchy snow globe?! But I know that things could be so much worse so I’m thankful that these are the least of my problems.

The hard thing about invisible illness is that you can feel terrible and still look good. Before I moved back home my church family here knew what I was struggling with and they were praying for me like crazy. (If you’re reading this and that was you, thank you!) When I finally made it to church a couple of weeks ago it was wonderful to see so many people and get lots of hugs that I’ve missed this past year. That first week back I was feeling better than I had in a long time, though still not good. I was on a bit of a “I’m out in public and seeing people high” and I can’t tell you how many people told me I looked so good. I had one sweet friend mention that it would be hard to convince people I had been so sick. I know some people with invisible illnesses have a really hard time with comments like these, but it didn’t bother me because I knew she was right. I also knew that she loves me and had been praying for me, and would continue to pray for me. But it serves the point that many people with chronic illnesses can look fantastic and still be very sick. Looks can be deceiving and makeup can cover all sorts of things like rashes or paleness! If you know someone who lives with chronic illness, be extra kind. In fact, be extra kind to everyone because you never know what they may be going through.

I feel the temptation to give in to discouragement and frustration. But instead, I choose to choose joy. I rejoice in so many things. I’m still alive, I’m home with family for Christmas, I get to cuddle my puppy as much as I want (she’s curled up by me as I write this), I get to see friends I haven’t seen in too long, I’m making really good progress on my journey to publication, I could go on an on. There are so many things to be thankful for!

And I choose joy!

We’re celebrating the greatest gift ever given to mankind, the gift of Jesus. He came into this sinful and broken world, lived a sinless life, took our sins upon Himself, died for us, and rose in victory, defeating sin and death so that we can live abundant and victorious lives in Him. I am a child of the King of kings and Lord of lords. No weapon formed against me shall stand. I know that in Christ I am already healthy and whole and if my body never experiences health this side of heaven that’s okay. My spirit is already experiencing it in Christ and that’s enough for me! Joy is a choice and today, like my for King & Country shirt says, “And I Choose Joy!”

If you’re living with chronic illness too, or experiencing another hardship in life, I want you to know that there is hope in Jesus. You too can choose joy even in the midst of painful circumstances. I’m not going to lie, it’s not an easy road to walk at all, but it’s possible with the help of Jesus. He will never leave us or forsake us and He loves us more than we’ll ever be able to comprehend. Let’s choose joy today and every day!

Until next time,

Josie