I have been feeling ok since the last time I updated. I was feeling pretty discouraged at the beginning of December, but it really helped to see some more improvement in my symptoms over the holidays. I'm not back to normal or even feeling great yet, but I also wasn't counting down the days until my next Stelara dose, so that is really positive news!
I had that Stelara dose {first time solo, without a nurse!} at the end of 2021, so my doctor had me do some lab work right before it to see where we were. My C-Reactive Protein {which measures acute inflammation} is finally in the normal range! Which is also good news as it relates to my higher cholesterol levels: if you have high LDL but a low CRP, that low CRP reduces the risk from the high LDL. So while I still need to address the high LDL {which is probably mostly attributed to low activity...hello, fatigue!}, my risks are manageable and not worrisome right now. Baby steps :)
My Stool Calprotectin {which measures inflammation in the GI tract} is still high. BUT...it has come down so much from where it was! In May 2021, it was 322 ug/g {normal is 0-120 ug/g}, which was an improvement from May 2020, when it was over 1,000. Now it's down to 166. So still high, and outside the normal range, but we're getting closer!
All of my other numbers {CBC panel} are back to normal, which makes sense, considering I have not had any bleeding in several months. TMI...sorry.
He also checked my medication levels. I had a good amount in my system that day before my next dose, which is good because it means it's working as a maintenance dose. However, my doctor said there's still room to adjust my medication if I start to see symptoms return before my next dose. So we'll see what the next {now} 6 weeks hold, to see if I need to change my dosage from every 8 weeks to every 6 weeks. I won't hesitate to increase that dosage if needed, but of course, I would prefer to put as little as possible in my body to achieve good results. I also don't have any antibodies built up against the medication, so hopefully that holds for a very long time...
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I know that was a lot of detail and clinical-speak, but I want to have a record of my progress. Because I am seeing improvement! It's slow, and the measurement/timing seems to take SUCH a long time before adjustments can be made. But we're getting there. I don't feel great, but I feel ok. Most of my GI symptoms have subsided {hooray!}, so now my main focus is fatigue, achiness, and migraines.
I know I have talked about fatigue before, but this has really been a struggle for me this past year. Fatigue is part of a chronic illness, especially one that has been active for 2 years. But this level of fatigue has been unlike any of the fatigue I have felt in the past. I have very limited energy, and when it's all used up for the day, my body just shuts down. I'm done. And please let me be clear: fatigue is different than being tired. I feel exhausted, even after 10 hours of sleep. I feel like I need a nap after a simple shower or running an errand. And it's not just feeling sleepy; it's the physical feeling of your body being done. It takes so much effort to get up and cook dinner and do normal things because my body just feels heavy from exhaustion. If I do get a burst of energy, I often try to capitalize on it as much as I can {because hello, life with 3 kiddos}...and I pay the price for it. I'm still working on that balance, and I'm thankful for a patient husband and kiddos. Because it's hard when mom needs to "rest" again.
I still have a journey ahead of me...but I feel like I am finally starting to see a glimmer of light at the end of this tunnel. The prayer is that this improvement continues and holds. For now, I choose to praise God for better labs and fewer GI symptoms. And I also choose to give myself grace when I need to rest, again, knowing that my body is healing, and it's just going to take some more time.
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