I am writing this while I still feel the anger over incidents of this past two weeks. My anger is useless, and I am really trying to be rational about it, but when you are the mother of a child who is suffering (even if that child is a young adult now at age 23 – she’s still my baby) you run the emotional gamut.
Deanna has Dystonia and Narcolepsy. Narcolepsy comes with or without Cataplexy. Deanna has the kind with cataplexy. She also has hypertension, which has been controlled with medication since she was 11. Most of the time, all these conditions are well controlled and Deanna can live a fairly normal – if normal means you can’t work or drive a car. Her life is generally quiet and isolated.
The quiet life was invaded on Tuesday and Wednesday this week by the “Specter of Withdrawal”. Yes, this event really brings up feelings of being hounded by “a haunting of disturbing image”. More on that later.
Here is the back story.
Deanna takes a highly regulated medication for Narcolepsy. It is very effective in helping with two specific symptoms of Narcolepsy – cataplexy (paralysis) and excessive daytime sleepiness. Since Deanna has hypertension, she cannot take the drugs prescribed to fight daytime sleepiness – they are all stimulants and raise blood pressure. We reluctantly agreed to give them a try and it was an unmitigated disaster.
This sleep medication is only available from one pharmacy in the United States, and it has inviolable rules. I appreciate that. No one wants to see powerful drugs abused, least of all me. Deanna is on a 27 day shipment cycle for this medication. I have this marked on the calendar for all my devices (laptop, iPad, iPhone); along with a reminder 7 days prior to the ship date. That reminder is my signal to call the drug company to arrange the shipment.
Most of those phone calls result in scheduling the shipment. Then I let Deanna know the shipment will be there on that date and all is well.
But sometimes, the pharmacy needs to contact the doctor for a new/updated prescription. These prescriptions are only good for short periods of time – 2-3 months. And only doctors who have an established relationship with this pharmacy’s program can prescribe this drug.
When I say tightly controlled, I am NOT kidding. This is serious.
Deanna’s shipment should have been scheduled for this past Tuesday – so a week ago I called the drug company. And they informed me they needed to reach out to the doctor.
Me, being me, told them that’s great – but I will call the doctor too! Like many doctor’s offices, this one has one person on staff who handles nothing but Prescription orders and refills. This particular doctor is a psychiatrist so you can imagine there are a lot of prescriptions for a lot of highly regulated drugs flowing in and out of his office, so this person is important, and I rely on her.
I called the doctor’s office and left a message. Two days later, I called the drug company again, and was told they had not heard from the doctor. I wish I could say this is not typical, but I’d be lying.
Here is where I start to get angry and hope that my brain is talking to my heart. I exercise my considerable fortitude and stay rational. It is extremely difficult because this is about my daughter. All mothers know how difficult it is to watch your child suffer.
And we were about to have major – albeit blessedly short-lived – suffering, and all because of paperwork and a confluence of events that might happen once in a Blue Moon.
I called the doctor’s office again. I spoke to the office Manager. They assured me they faxed the order to the drug company that morning. I believed them. I waited until the afternoon and called the drug company again. This time I was told that yes, they had the prescription, but the doctor’s address was missing. They could, and would, call the doctor’s office as this could be handled with a phone call – no need to have the order faxed again.
So it’s out of my hands. Now I have to try to distract myself from what I know is going on. It’s not hard to imagine if you deal with this kind of thing on a regular basis as I do. But for the uninitiated, here’s how it goes. The drug company has many such calls to make. They are not necessarily expedited. An incomplete prescription may come in on Monday and not get a call back to the doctor’s office until Wednesday. The doctor’s office may not answer right away so another day goes by. Et cetera, et cetera, et cetera.
The failsafe is that although I call a full week in advance, the shipment of the medication is done via FedEx and can be overnighted. So I know I have until Monday to resolve this.
Ever hopeful, I called the drug company again on Friday last week. No, they had not been able to get in touch with the doctor’s office. So I called the doctor’s office. I called the front desk, I called the Prescription gal, and I left Voice Mail at with both. At the end of the day, I had nothing.
Needless to say, I was not happy about having come to the weekend with the situation unresolved but what could I do. Deanna’s last bottle of medication was running low and we were stuck.
On Monday, I called the drug company again – still no response to their repeated calls to the doctor. So I started calling again myself.
And that’s when the wheel’s fell off. There was a new announcement when his numbered was answered.
THE ENTIRE OFFICE WAS OUT SICK WITH THE FLU!
What are the odds?
Deanna took her last dose from her last bottle of medication on Sunday night, and she wasn’t going to get a shipment on Tuesday. She might be able to manage one night without it – but two was definitely pushing it. Deanna was calm, as usual. When I asked her how she felt, she replied via text “I’ll survive”.
I called the drug company to explain the situation and tell them why the doctor’s office was non-responsive, but as I said they do not bend the rules. And as much as I hate that I also appreciate it. I know my daughter is not the only patient who is going to have issues because of an entire medical practice coming down with the flu. The flu is particularly bad in our area this year. As I said, what are the odds?
But there was a silver lining among the clouds. Two, as it turned out.
With the Doctor’s Office Voice Mail message, there was also an email address! In three years being a patient at this practice, we’d never had that. So I wrote to this address immediately on Monday afternoon. I made sure to put URGENT in the subject line.
Deanna spent a basically sleepless night Monday night and woke Tuesday with the first signs of withdrawal. Of course, I knew nothing about it until Wednesday. Deanna is a very stoic patient. I asked her on Tuesday how she was doing – her response was “I’m OK”.
Not so much, but I’ll get to that.
Miracle # 1 – the doctor himself called me after reading my email. Apparently he was over the flu, but he couldn’t find Deanna’s records at his office. His staff was still out, so he asked me to call his service with the prescription details and the pharmacy phone number. I did so immediately.
Miracle #2 – I realized he’d called me from his personal cell phone!
So now I have his email address, and his office, service and personal cell phone numbers! This only happens in the movies (see “As Good As It Gets”).
I gave it a few hours and called the pharmacy for what was to be the last time in this nightmare scenario. The confirmed the shipment was set for Wednesday. That meant Deanna had to endure one more night without her medication.
Yesterday, her texts did not indicate things were not going well. I asked her how she was doing and she responded “I’m good. Got me medication, how are you?”
How am I? Well, she comes by it honestly, this hiding of how she is. I’m ready to jump out of my own skin but hiding it from her to spare her. The last thing she needs is to feel responsible for my emotional state, and she would take that on because that’s who she is.
But in the afternoon, I got a call from her boyfriend, Justin. He’d been dealing with Deanna for the past two days and he informed me that she was “off the rails”.
On Tuesday, after one night without her sleep medication, she had three bad Dystonia episodes, all of which ended in cataplexy. And not the type of cataplexy where you just lose all muscle control. This was cataplexy with narcolepsy. Total loss of muscle control and momentary sleep.
So each time this happened, Deanna regained consciousness in a state of total confusion, and started crying loudly as a result. Deanna and Justin have a sort of system for dealing with these types of episodes, but this was particularly bad.
Additionally, she was having yet another withdrawal symptom – hallucinogenic dreams. Scary dreams. This is where the whole specter thing comes in. You want sleep, and you need sleep, but what kind of sleep quality do you have when you dreams are inhabited by unearthly beings who are messing with your private parts?
Yes, that’s right. This is what happened when Deanna tried to sleep on Monday and Tuesday night. One of the symptoms of Narcolepsy is vivid, sometimes frightening visual and audio hallucinations. Deanna has had these hallucinations, and just like the recurrence of repeated cataplexy episodes, withdrawal can bring on hallucinations. About the only good thing you can say is she did not appear to have them when she was awake – only when she tried to sleep.
The phone call from Justin came because the situation had escalated and he felt I should know. Deanna was quite literally off the rails emotionally, bouncing from laughing to crying and back again with no control. Anxiety, depression, elation, etc. were all wildly careening around. Better living through brain chemistry.
What could I do? She had the medication. She just had to make it to the evening and go to bed early. When I spoke to her, she sounded absolutely fine. She told me they were going to the bank. I asked her if she felt OK to go out (although I cringed at the prospect of her being left along even for a second) and she assured me she could handle it and was looking forward to getting out of the house for a bit.
By now, I am living everything my daughter is feeling and more because I am not with her. I must rely on what she tells me. I must trust that it will be OK.
It is that these times when I most feel the presence of God and feel better knowing He will handle what I can’t. Man and medicine can only do so much.
This morning, Deanna is feeling much, much better. She took her first dose of medication at 10:30 PM last night, and the second dose at 1:30 AM, and then she slept until about 10:30 this morning! Trust me when I say this never happens. Sleep, even with medication, is usually difficult for Deanna. She obviously was very sleep deprived and her body needed to catch up.
There is never a good time for something like this to happen, but the timing of this particular mishap is particularly bad. Deanna and Justin are under a lot of stress. Justin graduated from college in December and is looking for a job, so far with no luck. His VA college benefits are done, and the lease on their home is up at the end of February. There is a lot to do, a short timeline, and much of the situation is beyond their control. Justin is pursuing all opportunities, in state, out of state, and overseas.
If a job doesn’t materialize soon, Deanna and Justin will be separated. Justin will go to Houston to live with his grandmother and continue the job hunt. Deanna will come to our home and stay with her Dad and me while Justin continues his job search. Since we have two dogs, Deanna will be separated from her beloved cat, Calypso. But one of our two dogs is actually Deanna’s dog, Hollie. So I am hoping having some fun time with her dog will make up for being separated from her boyfriend and her beloved pet.
This is not the way they want it, but Justin needs to concentrate on his job search and Deanna needs to concentrate on staying well. As you can imagine, there is a lot of anxiety floating around their home these days with the future looking this way.
All I can think to say to them is “It may look awful right now, but I guarantee it will not stay this way. Things always change. Change is the one thing you can always count on. You don’t know if the change will be good or bad, but there will be change. Unfortunately, a lot of it is out of your control. The best thing to do is stay positively expectant. Opportunity comes from the strangest places.”
Fingers crossed with an eye towards heaven.