After the ER nonsense last week, I made an effort to make a few calls today and see if everything was on track. I was dismayed to learn that the nurse practitioner filling in for my doctor, no longer seemed interested in handling my case. My regular rheumatologist is on maternity leave, and prior to her taking time off, we coordinated with her temporary replacement in terms of managing my care. The plan was to put in the request for IVIG, which was done, then begin IVIG as soon as possible. My insurance company was up for a contract renewal, and a new company won the contract. During this process a few of my referrals were shuffled, meaning I needed a new referral for IVIG.
This is when things got weird.
I was in and out of the ER last week, obviously, and the reason is pretty clear…I’m stuck in an awful flare. All I can do is sleep, and take medication for the nausea and pain. I either have a clot or gnarly phlebitis in my left wrist, but I refuse to deal with it until I go for my vitamin infusion tomorrow. Anyhow, I was speaking with the nurse practitioner, and she didn’t seem to understand what I was telling her. Nobody called me back from the office last week, even though messages were left stating that I’d been seen in the ER. I let her know that I’d taken it upon myself to start a medrol dose pack, which she was fine with, but she didn’t seem to understand anything else I was saying. Then she did the worst thing ever…
She told me she talked with my doctor, who is on maternity leave, and then suggest I go be seen at the teaching hospital because I could have access to more treatment options (theoretically.)
For those of you who don’t deal with a billion doctors…this is basically trying to dump me into another medical system because they’ve reached the end of what they can do for me…but we haven’t started IVIG yet. The nurse practitioner started going off on a tangent regarding how we couldn’t do more Cytoxan as I’d already done it for six months. I cut her off and made it abundantly clear that I was not looking to do anymore chemotherapy. It didn’t work, so why on earth would I want to do more of that nonsense?! She rechecked the notes and finally saw that IVIG was what I was trying to explain to her, which there is a huge difference between IVIG and Cytoxan. They are worlds apart.
This conversation was one of the most frustrating conversations I’ve had with a medical professional in a while.
The subject of a port was brought up, by me, because they need decent access to do IVIG. I was already approved by the old insurance management company, and it’s reasonable to expect the same approval from the new management company. It’s literally the only other treatment we have available at this point in time. Again the nurse practitioner and I butted heads. She kept talking about how I would need better veinous access to do IVIG…I kept telling her this was why my primary care doctor, and I, had discussed the options thoroughly, and decided that a port would be the best option.
She then starts talking about how I will need a PICC, or more likely in my case, a central line. Why the hell would you give a patient who will need IV treatment on and off for the rest of their lives, a central line, when you know damn well you’re going to have to maintain the central line for years?
This led to more confusion between her and I, and at the end she said we’ll just handle it when the referral for IVIG comes through. Okay, in theory, but can we talk about how that’ll just add to the wait time to start IVIG? At this point I’m going to have to advocate hard for the port and IVIG to start at one time. Since I have to have IVIG two days in a row, and I have a history of allergic reactions, the IVIG will end up running super slow the first time. Why not just do the port surgery as an inpatient procedure, start the IVIG at the same time, and save everyone a lot of time and energy?
All of this is taking place while I’m trying to juggle difficulties in my life, including finances, and depression. Lately the depression has been justifiable given the circumstances I’m going through, but it doesn’t make it any easier to handle. I just want a normal life, and as excited as I am to have tools like a wheelchair at my disposal, I worry how the world will look at me. Will I be able to use my port for IV fluids at home? What about medications? Will I finally have the ability to care for myself or will I just become “that sick girl” to people around me?
While I know my chronic illnesses don’t define me, they do rearrange my life, and I think it’s okay to acknowledge that. I don’t have to be Behcet’s disease, but I do choose to be the face of Behcet’s disease. People hear you say it’s autoimmune vasculitis, and they don’t think much. The reality for patients with more complicated cases, is that it’s utterly life changing. We don’t know why it hits my nervous system the way that it does, or why it’s so damn resistant to medications, but it doesn’t mean we can’t find something that works.
Hopefully I find out this annoying painful lump in my left wrist/hand is phlebitis and not an actual clot. The last thing I need on my plate right now is some surprise blood clot in my wrist/hand. They did push IV medications that usually drip due to their impact on veins, so I’m thinking that the issue is just irritation from that drug. You’ve got to love that the U.S. is running out of IV bags because of the flu being so bad.