Well it's been three weeks since I wrote this post. And about a week and a half ago, we had our decision made after a lot of talking, researching, soul searching, crying, etc. It really was one of the more major emotional decisions we've made. But as we probably knew from the very beginning, we knew the decision was I have to try this next layer of defense. If I don't try, I may be missing the opportunity to feel better day-to-day and really that's all we are asking for.
We made the choice to just go with Humira for now, instead of the dual therapy of Humira and Methotrexate. There were a couple of reasons for this, but one of them is that if you've been watching the news you know our country is about to run out of Methotrexate, which is VERY scary for the many cancer patients who depend on it for their treatment not to mention the many auto-immune patients who also depend on it.
Please keep your fingers crossed that the single therapy shows me some improvement, otherwise I will begin the fight for Methotrexate as well.
The process to starting Humira has not been an easy one for me, not just because of the emotional baggage but because dealing with the coordination of the items I needed to do before I can start did not go smoothly at all.
First it was the lab, I arrived on a Monday at 2 p.m. to have my blood drawn and was told that the test I needed had to be drawn before 2 p.m. Excuse me, what? Might someone have shared that with me when they gave me the lab slip?! To say the least I was upset and I was already having a rough day so I fought the tears while I had my chest x-ray that was also required. I told the lab I would be back on Friday morning since I was busy the next few days and couldn't make the half hour trek until then. Well I arrived at 11 on Friday, had my blood drawn and off I went. About 10 minutes later the lab tech called to inform me that oops, one of the vials he drew was only to be drawn M-Th. You have got to be kidding me right. First I've had to come back twice in one week and now you may have drawn blood that you did NOT need. I politely but very firmly, with no question in my voice of my irritation relayed that I had been there Monday, told them I was coming back on Friday and NOBODY said anything about needing to come sooner!
It's amazing what a firm conversation will do for someone, because next thing I knew the supervisor was called and they were going to figure out a way to work it out and get back to me. Of course I heard nothing from them, Monday was a holiday and by Wednesday I called back to find out that my labs were still in process which was a good sign because they hadn't been cancelled. Really, can you not just give me a call to let me know that.
In the meantime I had also spoken to my GI's nurse and let her know about the labs parameters on this particular test. I really find it hard to believe that I'm the first person whose needed this test that has gone to the lab after 2 p.m. and on a Friday. She said she would talk to someone.
It took about a week for the insurance to approve the use of the Humira and on Friday the nurse called to inform that it was approved and to call my specialty pharmacy to set up the delivery and the home health nurse to come and teach us how to inject the meds. So I called yesterday, Monday, and easily scheduled the delivery, but low and behold they don't coordinate the home health nurse they said my doctor should do that.
I then had to call the nurse AGAIN (probably the fourth call regarding this whole thing) and they acted like I was the confused one. Then they finally figured out that because my insurance uses a different pharmacy than the one they usually do the Humira prescrips from the home health stuff had never been submitted. UGH! Come on people. I'm not waiting on an urgent request to get someone out here to teach me how to do this.
And while I wait to schedule that, I get to look at this lovely package that was delivered this morning...
Humira needs to be refrigerated so it comes freeze packed. I also got my very own sharps container and box of alcohol swabs. We are a regular doctors office around here now.
I will be getting a delivery like this once a month with my injections. It's kind of weird I won't lie.
This is now hanging out in our fridge until the home health nurse can come. Nothing like looking at the thing I have been majorly anticipating for the next who knows how long, every time I go get something to drink. Fun!
I feel like this decision and process has been even more dramatic than it needed to be based on the experience over the last few weeks, it's like pulling teeth. I just want to get on with this. All this build up is enough to give a girl major anxiety!
So until the nurse calls, I'll just be careful not to grab the Humira instead of the juice.