STORY TIME: First Time Using Stelara (And am I a Diabetic now?!)

Hey friends!

If you keep up with my “Chronic Illness Chronicles” you probably remember a little something about swollen optic nerves and vision issues that accompanied my Humira use. (read: HERE & HERE!)

My eyes are improving – slowly but surely. I have another follow up appointment with the neuro-ophthalmologist at the end of July, so she can mark my progress. BUT, I was told not to stay on the Humira as they were worried it could cause irreversible damage.

SO. I started up on Stelara.

If you’re wondering what the difference is, I couldn’t really tell you. It’s just another immunosuppressant medication used to treat Crohn’s Disease. And Psoriasis and Arthritis and all those fun inflammatory illnesses…

I was super nervous about starting this medication, because getting on any kind of hardcore medication is hard and kind of scary, and I already had to overcome my fear once starting the Humira, and now I had to do it again. What’s nice about Stelara is that I only have to inject it every 8 weeks as opposed to doing it every other week like I was with the Humira.

The first dose though has to be administered in the GI office through an IV. So I sat in a big comfy chair with a stranger next to me and received my transfusion.

The needle hurt because it was a weird place to get stuck (in my opinion – never had one there before!) But after that, it wasn’t too bad. I read a little, played on my phone a little, and I’m really lucky my sister was there to keep me company!

The nurse walked me through how to administer the drug myself with the injections that come pre-filled to my house. They’re different than the epi-pen like Humira injections so I’m a little nervous to do them. There’s also a 45 degree angle involved in how I inject it so obviously that’s going to be a problem because.. we all know my relationship with math.

The transfusion took about an hour and a half, and it didn’t make me feel weird or different. I just had to pee – like you always do after getting an IV baggy.

I’m not really noticing a difference in how I feel, but I don’t think I left a long enough gap between medications to get sick again. As far as my immune system goes – I work at a preschool and haven’t felt like I get sick easily, but my allergies seem a lot more sensitive so I experience a lot of cold-like symptoms as well, which is a known side effect.

I also am experiencing some sun sensitivity with this medication ( I think). I can’t find anything online that says so, but I could lay out for 20 minutes and come in RED. Which is not my normal at all.  I used to get away with skimping on sunscreen in the summertime, but I don’t think that’ll be the case this year.

DIABETES?

You guys. My doctor actually said diabetes at me. I don’t know if its the Zoloft I’ve been on for about a year now or what. But my appetite has been OUT OF CONTROL. I could eat enough for 3 people and still feel like I could eat more. Like what in the world? So I told my doctor and he ran a bunch of tests. Not pregnant, no thyroid problem, but my sugars were higher than normal. GREAT. He didn’t test me fasting, though so I thought it was a bit weird. Regardless, I still cried all through my 40 minute pity party on the drive home that afternoon.

Because on top of managing my anxiety, Crohn’s disease, asthma, allergies, and weight, let’s throw Diabetes in the mix shall we? I mean it does run in my family, why not? WHY WOULDN’T I END UP WITH DIABETES?

Turns out, I’m not diabetic. My A1c came back normal. But now I am terrified of sugar and carbs. (I mean, not terrified enough to not eat an entire box of Oreos in two days, but terrified enough to keep my regular diet in check a little better.)

It’s been a ROLLERCOASTER. But that’s life with a chronic illness. I’m hoping no crazy issues arise from the Stelara because I’m not quite sure what my other options would be?

As far as my diet goes, I’ve stopped eating anything with a lot of fiber. I think my high fiber/protein low carb/sugar was bulking my waste way too much and it was causing me a lot of problems in the area of my intestines that are scarred and narrow. It’s been going really well for both my stomach and my weight loss thing. I haven’t been actively pursuing that because I’m more concerned with not being sick, but its a cool bonus! I’ve been eating a lot more soup, yogurt and white bread. And then eating that kind of thing every 2-3 hours. It seems to be keeping my system light and constantly going. I noticed the constipation was less, the bloating went down, and I stopped hearing my stomach processing shit. Which is cool. I’m also starting the Meta Appetite Control supplement this week to see if that helps the beast inside me that wants to eat everything in sight. LOL. Because I’d really hate for Zoloft to be the culprit and have to change medications. If you take anything for your anxiety/depression, you know how much of a PAIN IN THE ASS it can be to find something that 1. Doesn’t make the issue worse 2. doesn’t make you physically ill and 3. actually helps without any crazy changes in your personality. So I really don’t want to change what I’m doing.

I hope we’re all making the very best of today & every day! (even if it is Monday.)

xo, K

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