I was so optimistic and excited and hopeful about being off of prednisone!
And then, Sunday afternoon hit.
And since then, I've spent about 12 hours being awake. ;)
I have been sleeping over 16 hours a day most days. I feel like I got hit by a truck! My joints got all stiff and started hurting like nobody's business - the worst pain I've had since coming home from the hospital. And I've been running a constant fever. *sigh*
At first, I thought it was the usual reaction I get when I taper down to a lower level of steroids... but by Wednesday afternoon, I realized that I am flaring. Without the prednisone suppressing my body's inflammation, my body launched another attack against itself. And apparently, I've really upset myself, as the attack feels rather vicious.
I talked to the JP NP... we discussed my options. She wants me to start Cimzia, a biologic medication.
A huge incentive for having my colon removed was that this "curative" procedure would allow me to get off all my UC medication, including the biologic Remicade treatments, as I would no longer have colitis or arthritis. Unfortunately, less than 4 months after surgery, Dr. A told me that I needed a biologic medication to control my pouchitis - the colitis inflammation coming back in my J pouch. My arthritis returned as well. A few months later, I started injecting myself with Humira, another biologic treatment. As a last resort, Dr. A removed my J pouch, which he strongly hoped (but did not promise) would cure me of my autoimmune ailments. Alas... it did not. So here I am today.
I was not ready to make this sort of decision over the phone. Biologic treatments are not benign, and though they are highly effective for many people, they don't have a great track record with my body. Also, I wouldn't be replacing my methotrexate (immunosuppressant shot) with Cimzia. I'd just be stacking up meds, and right now my goal is to get OFF medication, not add more!
But really, my goal is to get functional again. To get to the point where I can leave the house more than once or twice a week, only to return home so exhausted that I go to bed for the next few days. To be able to walk without limping. To have less pain and stiffness. And if Cimzia could do that, even for a few months, might that not be worth it?
I don't know. In the meantime, JP NP suggested that I go back on steroids for a month or so.... more news I did NOT want to hear. She has no idea how to do steroids for a patient with adrenal insufficiency, so she wanted my Endo Doc
to decide how much steroids and for how long. Um, my Endo Doc is great,
but she has NO idea how to treat an arthritis flare! I finally nailed
down what the JP NP would "normally" do for an arthritis flare, so now I
can ask the Endo Doc for guidance on how to manage the steroids. I am still just hoping against hope that the flare will stop without needing steroids.
JP NP did agree to my proposed plan: that before jumping to steroids, I'd do a few days of my prescription-strength NSAIDs (Non-Steroidal Anti-Inflammatory Drug - the class of drugs like ibuprofen and naproxen; drugs that have an anti-inflammatory effect, but are NOT steroids), but she didn't think that would be sufficient to get this flare under control.
Most of the time, God has been really gracious to grant me a pretty good outlook and attitude about living with this illness and everything that goes along with it. Honestly, though, this week has been really hard, and my attitude has not been great all the time. I just want to be "all done" with this trial and wake up and be better... preferably with an intact GI tract and no scars or bags or painful memories. I want to have learned everything that God wants to teach me. I found myself asking Him what exactly He wants me to do so this can stop.
I know all the good things I could list that have come out of my illness, I know all the millions of blessings God has generously granted me through this trial... and I remember those things, and thank God for them!
This week, I've just recognized that although I've gained a lot, I've also suffered very great losses, from my health to my dreams. For as many happy blessings as I've received, I've also gone through many unbelievably hard things. I thank God daily, but I also daily face very real physical and emotional and psychological pain. And I look forward to and long for heaven, but many days here are almost insurmountably difficult. It's hard. It's usually not fun. And it hurts a lot. Some days, it's agonizing.
I'm learning that it's okay to acknowledge all this sometimes. I think of the children of Israel crying out to God in the midst of their bondage to Egypt, and God turning His ear to them. Even Jesus wept in the garden. The Psalmists describe in flowery detail the things they've lost and suffered and gone through. Paul wrote lists of the hardships he'd endured (I do note that he did NOT make this list so he could whine about how bad he'd had it, but the fact that he was able to make that list indicates to me that it was present in his mind at least occasionally). I think the key is to end where Jesus did: If it's possible, let this cup pass from Me, but not My will, but Yours be done.
It's okay, and even good, to cry out to God in the midst of hardship and trial, to tell Him it's hard, and to ask for relief and deliverance, but it's most important to be in submission to the will of the One who did not spare His own Son, but delivered Him up for us all. How will He not also, along with Him graciously give us all things? (Rom 8:32)