I promised to update everyone on Lizze's appointment to the Neurological Center for Pain at the Cleveland Clinic yesterday. The last 24 hours have been very difficult for a number of reasons but for right now, let's focus solely on Lizze.
The Neurological Center for Pain is where Lizze is going for help with her migraines. The we migraines are truly awful and the biggest reasons she's disabled.
These migraines limit almost every aspect of her life, and force her to live in excruciating pain. This pain is every minute of every day and as of now, there's been no treatment that's worked.
Over the years she's been on every preventative and even tried Botox but nothing has ever worked. In fact, the Botox made things much worse because she had a really bad reaction to it.
Currently, we're waiting for a brand new medication called Aimovig. It's brand spanking new and hailed as a breakthrough in the treatment of migraines. It's very expensive but insurance has approved it. She should have been on it for over a month already but the approved pharmacy dropped the ball.
During the appointment, her doctor got the process jumpstarted once again and we will follow up next week.
Unfortunately, it will probably be a few weeks before the new medication is available, so we have to get her through until then and there are a few options.
Cefaly The first option is buying a device that's designed to both break and prevent migraines. It's called Cefaly and it's bleeding edge tech that is FDA approved to both treat and prevent migraines. It requires a prescription and is supposed to be amazing.
Unfortunately, while she has the prescription, it costs $500 and isn't covered by insurance. That makes it 100% out of pocket and 100% out of reach for us. We simply can't afford it.
I've reached out to them in the past and tried to get a review unit for her to test. I'm able to get things like that sometimes. I've most recently worked with Quell and prior to that, Fisher Wallace. It's one benefit that I do have as a result of the platform I've built over the years.
I've never been able to get any type of response from them and so that's not looking to be an option.
At this point, we may be able to pull it off with tax return but refunds are significantly delayed this year because of the shutdown. A large part of the return will also have to go towards repairs to the house and car, so there's not a great deal of wiggle room.
Steriods The second option is something I hadn't really thought of but it's apparently a thing. The doctor explained that migraines are thought to be the result of inflammation. Steriods can be used to reduce the inflammation but it needs to be a pretty heavy dose, and it may not work.
The upside is that it's likely approved by insurance and if not, it's probably financially feasible for us to cover out of pocket. Headache Infusions The final option is what's called a headache infusion. Lizze has had this done a few times in the past with mixed results. It's been many years since her last one and she's never had them done by the Cleveland Clinic.
Essentially what happens is that she's hooked up to an IV for six hours a day for four days. They pump her full of a combination of medications. Those medications are usually high dose preventives and narcotics. The idea is to break the migraine or more likely lessen it. This has been very effective for Lizze in the past but she's also had them done and derived very little benefit.
A huge downside to this is the logistics. It has to also be approved by insurance and we won't know anything until at least Monday. Decisions Decisions The Cefaly would be the ideal choice right now because it can be done in home and as needed. Assuming it actually worked, it would also be a safe, drug free solution that essentially required a one time, upfront cost.
Unfortunately, that cost is preventing us from taking advantage of the Cefaly. I'll try to reach out to them once again because she actually has the script for it now. Maybe that will make a difference but I'm not holding my breath.
We aren't writing this off completely, it's just not affordable at this point in time.
As for the steroids, the likelihood of this working is pretty remote and the side effects can be *unpleasant*. It's not the best idea and therefore, not really a reasonable option.
After weighing the options and discussing it with her doctor, the headache infusion is the best option. It's very likely to at least reduce her pain and it could even break the migraine altogether. She's had this migraine every minute of every day for at least the last six or seven years. We have to go with whatever is most likely to help and that's the headache infusion.
Lizze was originally scheduled for today, Monday, Tuesday and Wednesday of next week. We would have to be there very early and the infusion would take about six hours each day. That's a total of at least twenty-four hours of infusion time.
We are *not *in a good place financially and frankly, we're getting buried alive at the moment. It's temporary and should improve but for right now, things are bad.
The original infusion schedule was tossed because insurance hadn't approved the proceedure yet and at the time of writing, we still haven't heard back.
The reality is that it will most likely be covered and we'll probably hear back early next week. That's a good thing.
Unfortunately, the logistics are going to be difficult, if not impossible. Putting aside everything the kids need, like rides to and from school for those four days, there are other issues as well...
Our car is literally falling apart and I have serious concerns as to whether or not it would even make it through four trips back and forth. I say four round trips because that assumes I sit in the waiting room the whole time. If I have to mange things with the kids, I may have to make two trips a day. As it is, we avoid making longer trips in the car because it's long since past its expiration point.
Assuming the car would safely make the trips, there's fuel costs, parking, probably food and there's bound to be unforeseeable expenses. Parking alone will be at least $50. I priced it while we were there yesterday. These are serious financial obstacles for us.
We're already in a bad place due to the time of year and business being slow. I wasn't planning on having to make four round trips to the Cleveland Clinic, possibly more, but that doesn't matter because she desperately needs this and I simply need to make it happen.
Even if money wasn't an issue, managing the kids during this time would prove very tricky. While the boys would be in school, Gavin would likely have to go with us and that would end up being incredibly challenging in its own right. The only other option would be for him to stay with someone for most of each day we're there.
I love Gavin and he's a great human being but that's a lot of Gavin for anyone outside of us to really deal with.
Like many other families out there, we live paycheck to paycheck. One of the differences here is simply the added responsibility associated with three special needs kids and my wife being disabled. It's not their fault and please don't mistake my transparency as complaining. I'm not complaining. I love my family and will do anything for them.
The reality is that the added responsibility very much ties my hands in many areas of my life. I have to work from home and that means work isn't always steady or I'm not always available when it is.
I'm often surrounded by constant distractions. Being a fulltime caregiver to these four beautiful, amazing people in my life, can pull me in four different directions, all at the same time.
There's only one of me and trust me when I tell you, *that's just not enough*.
I have no idea what I'm going to do or how I'm going to overcome any of these obstacles but quiting isn't an option.
Update:
I wrote most of this on Thursday (1/3/19) and simply proofed and published it tonight (1/5/19). Sadly, my grandfather passed away on Friday morning (1/4/19). Its been a very difficult couple of days for all of us. Services will be early next week and that presents some additional financial and logistical challenges. It also presents some serious emotional challenges as well.
