Luke vomited this morning. Repeatedly. For the past 7 days, I’ve driven home the point that Luke should eat a snack when he takes his medication. Today, Luke didn’t eat a snack.
Luke was so violently ill this morning, I stayed home. Fortunately Luke rallied after about an hour. I’m hoping he doesn’t refuse to take his meds because of this morning’s incident since the meds take 6 weeks to work. Before he took his dose this morning, Luke reported sleeping more restfully for the past several nights – a sign his anxiety is decreasing.
The Fibro/RA Update
I’ve felt ok for the past few days. I’m not having epic days of accomplishment, but I’m not flaring and feeling terrible either.
After a few months on guaifenesin, I’ve stopped taking guaifenesin. This is the only way to see if the guaifenesin is helping or if I’ve just been experiencing a cyclical lull in symptom severity. Also, I can’t afford another bottle of guaifenesin right now. The rheumatologist’s office rescheduled my 6mo appointment so I may soon be without pain meds and/or prednisone since the (horrible) pharmacy I’m required to use won’t refill my medications without a visit.
I took the kids on a 3 day trip which cost 2 months of spending money. Jonathan has had extra work lately, so I’m hoping he’ll earn extra to cover the gap. I’m also couponing for Luke and Oliver’s school supplies to spend as little as possible. The trip was fun and the kids had a great time, but this will make the budget miserably tight in the coming months.
Early this week, after Luke’s visit to the child psychiatrist, we decided to try medication. Luke has been restricting food all summer. He refuses to eat because he thinks he will gain weight and because he doesn’t feel like he deserves food. Luke doesn’t feel like he deserves to live, actually. His depression and anxiety are serious. He had 4 panic attacks in one day while we were on vacation. He’s quietly self harming. He quietly wants to die. He’s outwardly exuberant and silly – changing from topic to topic at light speed.
Luke also barely passed summer school. He squeaked by with a low C in English and Math. He just can’t focus. He tries. I try. Everyone tries so hard. He just can’t. Luke was held back in 2nd grade and we worried he would be held back again this year. He passed…barely.
We’ve been through a year of therapy, but Luke’s anxiety attacks prevent him from talking with the therapist, psychologist, and/or psychiatrist nearly 50% of the time. He freezes and stares, unable to respond. I’ve read books. I’ve researched techniques. I’ve been working with Luke on mediation and biofeedback and both helped slightly, but not enough.
After a year of trying our best to avoid putting Luke on meds, we decided to give meds a try. He’s on Strattera. I’m keeping a daily journal of his behavior and watching for side effects like a hawk. The child psychiatrist was impressed with how much I knew about mental health, meds, Luke, and Luke’s mental health. She was surprised my relationship with Luke is so good. Jonathan did not attend the appointment with the child psychiatrist. She was also deeply concerned about Luke’s self harm and restricting.
It’s a hard choice to try medication when your child is 13. It’s also hard to watch your child suffer from depression, anxiety, and ADD – their brain raging out of control and inadvertently ruining everything for them. Here we are. Luke’s Strattera sits beside my RA and fibro meds in the medicine cabinet and we take our meds together every morning.
The kids and I are visiting my best friend 7hrs from home. Jonathan wouldn’t come because he hates cities and she lives in a big city. I promised the kids a vacation before I ran out of money so visiting a friend was the only vacation i could afford. Being poor is annoyingly limiting.
The trip has been enjoyable for the most part. Luke has complained about most things for most of the trip. Oliver has done his best to instigate Luke. Luke has also been up to the usual shenanigans like refusing to order food at restaurants because he “doesn’t deserve to eat” and spending all of his money at the mall then complaining that he has no money. At least he hasn’t flopped down on the sidewalk and refused to move or handled feeling stressed by crying and grunting. It could be worse, but a break would be nice.
I’ve taken pics of everything we’ve done and sent them to Jonathan. Jonathan hadn’t replied to any of the pictures or texts. Maybe he’s mad? He’s always mad lately. The night we left he told me that I never listen to anything he says and I’m always dramatic. For all I know he’s not vrepkying because he’s secretly mad about some unknown circumstance.
Gustav the Intolerable and my best friend live together so I had to deal with Gustav at dinner tonight. Gustav called Luke a brat right after dinner when Luke was having an ADD/anxiety attack. I tried to explain that it wasn’t within Luke’s control and that like does not take medicine yet because it’s a tough medical choice to decide to treat the anxiety or ADD first. Gustav responded that it wasn’t a tough decision.
Writing this post I realize that today has actually been quite stressful. I hadn’t stopped to consider that until now, honestly.
The horrible day was 3 days ago now.
Here is the main reason for the horrible day:
Luke went to see the doctor (PCP) about obtaining some anxiety medicine based on the results of Luke’s learning assessment. Unfortunately, the PCP didn’t feel comfortable prescribing psychiatric meds to Luke since Luke is 12, and has both ADD and severe anxiety disorder. The PCP referred us to a child psychiatrist instead so Luke could be carefully monitored for side effects.
As soon as the PCP issued the referral, Jonathan went off. He shouted at that PCP for what felt like half an hour, but was probably more like 10 minutes. I don’t remember every detail of Jonathan’s tirade, but he said everything was “bullshit” several times along with “you people”, and “WE’RE DONE!!!” which he said repeatedly. To summarize the tirade, Jonathan thinks that Luke is being treated like a pawn, not a person, no one is willing to help Luke, and everyone is just after the insurance money. I tried to interrupt his tirade to explain that we haven’t been doing “nothing” for a year. I kept my voice calm and even, but assertively disagreed with Jonathan’s point. This year we tried counseling which only helped a little, we identified some problems, we had a learning assessment, we were obtaining the insurance-required referral to get meds for Luke – but Jonathan just kept shouting.
Luke hung his head and began to quietly cry. Oliver looked at Jonathan in quiet shock. The PCP looked at me with wide eyed expectation. What I going to cry? Was I going to yell?
I calmly asked Jonathan if he was leaving and he and the kids left. I talked to the PCP, her eyes now welling up with tears, about how Jonathan is struggling and to please send Luke’s psychiatric referral directly to me. The PCP hugged me and told me she was sorry. Sorry for what? That my husband chose to behave poorly?
Don’t feel sorry for me. Feel sorry for Luke who thinks Jonathan’s shouting tantrum is his fault. Don’t feel sorry for me. Wish me patience so I don’t slap Jonathan upside the head for behaving like an asshole to the only doctor who believed I was sick FOR YEARS before finally getting diagnosed with RA.
I wish this were the only incident that made the horrible day horrible; unfortunately it wasn’t.
Today has been a seriously horrible day. One of the horrible sorts of days that leave you feeling too worn out and emotionally miserable to really talk about it. Ugh.
Jonathan was in a foul mood. He was going to deliver a large piece of furniture to a client on Tuesday but the client cancelled. He had to build the huge custom shelving unit twice because the measurement was slightly off on the first cabinet so he was already frustrated.
Jonathan was sitting on the couch in his “man-cave” which was supposed to be a family room but has since been taken over by Jonathan as his snacking/TV watching/sleeping on the couch room. No one goes in Jonathan’s “man-cave” without being yelled at – myself being the only exception to the yelling rule only sometimes. I asked what I could do to help and Jonathan replied, “Shoot me. Put me out of my misery.”
BigDog started barking because he hadn’t been fed yet so I went out to feed BigDog. When I returned Jonathan had relocated to the garage. I had set a bag of trash at the garage door since the outdoor trash can was full and it was raining. Jonathan was angry BigDog was barking and grew even angrier once he realized I had set a bag of trash at the door. He slammed his tools down on the bench, kicked a piece of wood across the floor, and threw the garage door up the track so hard that the 9′ tall custom shelving unit, which was caught by the door, nearly toppled onto me. I managed to shove the cabinet off myself – barely – by chance and quick reflexes. I left the garage.
I know Jonathan suffers with anxiety and depression. I also have no idea what to do to help him at this point. He gets so angry that neither the children nor I want to be around him. He doesn’t sleep often. He doesn’t eat consistently. The only things Jonathan does are watch TV at night and work all day. That’s it, really.
I have no idea what to do about any of this.
My hands and feet are swelling and I have such a bad headache I can’t sleep. I’m sure the nap I took earlier didn’t help. I just felt so bad earlier that I thought lying down might help. It didn’t. Drinking water, taking aleve, applying an ice pack, taking ultram, sipping tea, and sitting in a dark room haven’t helped my headache either. It’s the moderately painful, stubborn variety of headache that just will not quit.
One of the hardest parts of having a chronic illness is having no one to whine to. When you’re sick – like normal people sick where you eventually recover- people don’t mind the inconvenience of listening to you whine about your momentary misery. However, when you’re chronically ill with no chance of recovery, people get very tired of listening to you whine since every day can present a new symptom and new reason for complaint.
I know from experience that I have to spread out my whining. I can’t whine too much to any single person no matter how much they “care”. I know they’ll get tired of listening and eventually they’ll come to see my health complaints as excuses or something I’ve brought on myself. They will make pity remarks about how I should get over it, be more positive, and just try harder. Unfortunately, I know this from years of experience.
I have to be chronically dishonest to preserve relationships, really. You know your honesty will slowly wear away at your friendships until the friendships collapse if you share too much too often. You have to say you’re fine even when you’re feeling utterly miserable at least 50% of the time to avoid overloading your friends and family. Even when you want to tell those closest to you just how miserable you really are, you can’t and that’s hard.