I had to re-read my last post and laugh at the irony. I was hoping my Lenten journey wouldn’t involve falling. Why would I hope for that when Jesus fell not once, but three times? So let me run through my last few weeks.
The problems with my eyes have been definitively linked to the rheumatoid arthritis. The eye specialist feels that this is very serious and that a change in my medications is not only necessary but needs to be sooner rather than later. Okay, I’m not happy about this since all the medications have serious long term effects but on the other hand I’m rather fond of seeing. After running through options with my three doctors, I was ready to make a move.
At this point I need to offer a brief explanation of how R.A. is treated. The doctors use a stepladder approach starting with plaquenil, which is a fairly benign anti-malarial drug that works well in controlling the fatigue and some of the inflammation. Step two is usually methotrexate, a chemo drug used in lower doses than used in cancer patients, which effectively suppresses the overactive immune systems in R.A. patients in the hope of slowing the disease. Steps three and up are all drugs seen advertised on television, known as biologics they include Humira, Enbrel, Remicade and others. I also need to explain that with R.A. there is no reverse. The only thing to do is to attempt to shift the disease into low gear for as long as possible.
Because of the issues with my eyes, it was decided that skipping the methotrexate directly to one of the biologics was warranted. And then the bomb was dropped. After reviewing my file a little more closely, my rheumatologist told me that I can not take ANY of the biologics – period, end of story. I’ve had double vision because of the inflammation in my eyes. The biologics can cause an M.S.-like syndrome that first shows up as double vision. The doctors wouldn’t know if the problem was from my eyes doing what they’ve always done or from the drugs. Either way, I would never be able to take those drugs again . What I told was this, “We’ll start you on the methotrexate and hopefully that will work for you for a couple of years and hopefully by then, the drug companies will come out with something new.”
WHAT?! That’s the course of treatment?! They’ve lopped off the entire stepladder for me and are hoping for something new to be invented! This is no longer about whether I’ll need a cane by the time I’m forty. This is about permanent damage to my eyesight if we don’t get this disease into low gear. And what if it doesn’t work? The answer was a not very encouraging, “The simple answer is that there is no simple answer. We don’t know.”
That sent me into a two-day panic. Now what? Okay breathe…remember the tree on the beach…remember the tree…God knows what I need…he will take care of me…but God knows I don’t like this. I kept writing those letters to God and I kept seeing the ways he had been there for me every day without fail. I stopped panicking but I’m still not happy about this. And I’ve reminded God about that every single day.
Meanwhile, as part of my Lenten journey (and before the bomb dropped) I had gone to Stations of the Cross at my parish. They’re offered every Friday during Lent and are always so beautifully done. This year Fr Tom offered a reflection that I’ve never heard and it’s sustained me through these last few weeks.
First Station: Life’s Not Fair! Stuff happens in life and it’s not easy.
Second Station: Accept My Cross. I accept this cross that’s been placed on my shoulders, but it’s still an external, abstract kind of thing.
Third Station: Fall On My Face. Yup – I did that and it hurt!
Fourth Station: Accept Support From Family. It’s not always easy to come home and tell my mom what I’m going through. It hurts to see the pain and worry in her face.
Fifth Station: Accept Support From Professionals. To allow the doctors, nurses, technicians and others to do their jobs and accept their compassion is hard. I’d rather stay in bed with the covers over my head. I don’t like to feel like I’m sick or I need help. That feels…weak…and…well…vulnerable.
Sixth Station: Accept Support From My Faith Community. This has meant swallowing my pride, sometimes gagging and choking on it. It means asking for rides when I need them and keeping people in the loop about the crazy developments in this mess. Admitting I need prayers and advice.
Seventh Station: Fall On My Face Again. OUCH! That second faceplant really really hurts. Yes hurts – as in present tense. I’m still trying to get my feet under me again. This knocked the wind out of me.
There are seven more stations to go. I’m not ready to walk any further yet.
Stations of the Cross reflection was presented at St. James Roman Catholic Church by Fr. Tom Lynch. I am so very blessed to have been there to hear him.