My son is such a great kid. He’s not aggressive like most boys his age (he’s 5). He is super affectionate and we could all learn from his determination.
Tuesday Roger had to have an endoscopy and 24 hour esophageal nasal tube test. I tried prepping him the night before on what to expect and showed him pictures of the nasal tube. We also kept repeating the food and drink cut off times. He nodded. He was completely disinterested.
The next morning he (we) woke nice and early. He asked for his morning snacks and water. We told him no to food and that he had 30 minutes left to drink water. We set a timer. He does well with countdowns.
The drive to the hospital was a bit lengthy due to traffic and the maps getting confused and rerouting. My husband dropped us off out front. Roger was hoping for a play area but there was none. Things moved very quickly and we were at the desk going over a ton of forms needing signatures. Roger looked at me and said, “I’m sad”. Up until that point, he was completely non-chalant. I told him mommy and daddy were going back with him.
Roger did well getting his cape on and getting his vitals taken. Usually his can never be read due to his non-stop movement. As things tend to go, our wait before getting his “silly” juice/sleepy medicine was nearly 2 hours. Roger was a trooper playing on his iPad and watching Home on their tv. The girl across from our “room” continually screamed “I’m scared!” If I were in Roger’s shoes that would’ve made me a wreck. He seemed not at all bothered (thank you, autism). Finally, he received his “juice” and started quieting down and got sleepy. They wheeled him back to the OR about 30 minutes later and he did not get upset at all (inside I was a mess).
The procedures did not take long, all went well, and we were allowed to go to the recovery room. Roger’s eyes were full of tears. He kept repeating that he wanted the tube removed. It was a circular cycle of him asking, him being denied, and him spiraling into a series of coughing that even worried the nurses. During this time, the tube also had to be moved down his esophagus further. It was all so heart-wrenching. He also needed arm casts to prevent him from touching the tube. We tried to have them off a few times but he immediately would grab at the tube.
The tube, the arm restraints, and the awful food schedule of him only being able to eat/drink every 4 hours with nothing in between was what we left the hospital with. We had a few bad moments during the day but he was so unbelievably good. I would not have been that calm and easy-going.
My son is one remarkable little boy.
To begin with let me acknowledge that I am grateful for the Affordable Care Act. I am able to get ABA services for my son because of it. Employers can opt out of that coverage and most due (unless the founder/CEO/other bigwig is personally affected by it). Also, Roger will not be denied medical and behavioral services based on the pre existing condition of autism.
2015 was our first year using an ACA plan for Roger. We reached the out of pocket maximum in less than two months. He was able to attend the Easter Seals preschool. Without the insurance that would not have been possible since it costs $4900 a month ($58,800 a year). He is excelling and it has been a year of unimaginable growth. There have been some pitfalls with reviews of medical necessity, but, overall, an easy year.
Next year the medical doctor pool is dwindling for the ACA plans. Roger will still be able to have his ABA but speech, occupational therapy, and physical therapy options will be close to none as well as pediatrician and specialist options. It seems our only solution will be to place Roger both on his own ACA plan and on my employer plan. In addition to the increased costs of monthly premiums, we will still be reaching his ACA out of pocket maximum without it benefitting the cost of his other therapies and medical needs. Those will be on a plan with it’s separate deductible and out of pocket maximum.
We will take on the extra burden of cost, but what happens to those who cannot?
My initial post was going to be about weight gain on my new medication. How I gained 4 pounds in the past month. My increased appetite with the increase in dosage. And how that shouldn’t matter because I am feeling in better mental/emotional health.
A phone call this morning made the weight issue seem not so important. One of my cousins passed away last night in an accident. I do not need to go into details related to the accident. Unfortunately, her mother has lost her husband and, now, both of her children. One of my first thoughts confirmed one of my beliefs that there is no god. Some people do heinous things and live a full lifetime. Some people destroy their bodies with drugs/alcohol/other substances and live long lives. Others pass away too soon having done nothing but live.
I’m not going to start preaching appreciate the life you have and those in it…although I did tell my husband to do so before he left for the movies with my son. I guess the point of this post (if there must be a point) is we focus on things so non-important such as weight while we need to change our focus to trying to be happy in our life. If that requires therapy, like it does for me, do it. Don’t feel stigmatized. I have felt happier (or more even keel) in the past 3 days while still getting into some tiffs with my husband than I have in the past 3 years. It takes awareness and work, but it is worth it. Do it while you can!
Today has been a day of waiting and wading through awful weather. I have gone to three back-to-back doctor appointments. Well, in actuality, I am still in the waiting room for the third. I am an inpatient person and have handled the waiting in stride. That last statement is conditional on the length of this wait.
You may be thinking: 3 doctor’s appointments in one morning…how old are you? Well, I’m 42. Although I sometimes feel ancient, I am not. My first appointment was my psychiatrist who is very cut and dry. Although this past week has been pretty even-keeled, I did have a few manic episodes in the past 3 weeks. Unlike the euphoria some bipolar have during mania, mine is filled with anxiety and irritability and obsessive thoughts. My meds were increased again and I am hopeful that will work better.
My second appointment was for my weekly allergy shots. It’s not an official appointment, but puts a dent of 45 minutes in my day. I have had severe allergies since I was little. When I lived in NYC, I finally decided to have shots, since medication did not work. However, after 10 months, I had an anaphylactic reaction and stopped them til about a year ago. Again, my allergies were making my life unlivable and my therapist urged me to try them again. I had the test and found out I was allergic to EVERYTHING except horse dander, cockroaches, and some strands of mold. I get 3 shots a week and have been doing much better.
My third appointment is the back doctor. I have had chronic back issues for the past 10 years, the worst being in my neck. I know a lot of that area has to do with stress, as well as degenerative and herniated discs and pinched nerves. I am still waiting for my 10:45 appointment. Only about 30 minutes late. However, this blog has kept me level. I’ll see if I go off the deep end now that I’m done!
I don’t know about the rest of the world but, for me, one day can feel like several disjointed days. Maybe it is because it begins so early and chaotically. Maybe because I have to make shifts between my jobs. Maybe because we are overscheduled. Maybe because I am exhausted from a lack of sleep and too many things on my mind.
Whatever the reason, today feels like I’m on part 2 right now. This morning was a lengthy parent-teacher meeting. They are very helpful, listen attentively and have great input. After the meeting, I decided to make a doctor’s appointment for Roger. He has had a cough for about a week that is so terrible at night that we are all sleeping horribly. I don’t think he was sick, but I wanted to double-check since he is scheduled for an endoscopy next week. I called from the school parking lot and scheduled a 10:45 appt. It was 9:15 in Grapevine which is roughly 30-40 minutes from our house in Highland Village. Instead of pulling him that early, I got some coffee downtown and picked him up a little after 10. The doctor reassured he is all good to go with the endoscopy and prescribed a nasal allergy medicine. She believes his coughing may be so severe due to his reflux issues. A quick run to Five Below for a transformer for being such a good boy (his words) and we headed home. Thankfully, my parents were able to watch him this afternoon, so I could enter part two of my day.
We arrived home minutes before my folks arrived. I was trying to bring all of our junk in from the car, get Snuffles outside to go potty, open Roger’s new toys, get a cup of coffee, take out the smelly trash, start laundry, etc. My parents always get to see me under a mountain of stress. A mountain of stress from just doing normal chores. However, I try to do all these things in ten minutes or less. I get frazzled, inpatient, snappy, pissed off, and super sensitive. Getting into my work flow actually calms me and gets me back into my routine. Clearly my Aspergers loves routines and gets upset when my routine is upset (as it was this morning).
Part three of my day will occur after my work shift. It usually consists of picking up Roger, going to therapy, getting his dinner ready and the bedtime/bathtime routine, and a quick interaction with my husband. Tonight, my parents are taking him to therapy (so I can make up work hours) and will be making dinner at their house.
I know I am lucky to have my parents available….and, yes, I did apologize for my earlier demeanor with them!
Over the past few weeks, I have tried to be very cognizant of my feelings/emotions/ups and downs. In doing so, I have been too anxious to blog out of fear of opening myself up to people and criticism. That is one reason I have decided to remove my blog from FaceBook. Those who choose to read about me have to actively do so.
Another reason I have not blogged is because I fear of sounding just depressed all the time. Always doom and gloom…who wants to read that?! However, if I only blog when I am happy that does not create the full picture of what I am experiencing.
Starting today I am (hoping) to blog daily. I know sometimes life throws a curveball, but I am hoping journaling will actually aide me in this journey of mine into treating my bipolar depression.
I am supposed to keep tabs on how my medication is helping, if it is helping, what my mood cycles look like, etc. This is the note I have been keeping on my iPhone since my last psychiatric appointment on October 2nd:
Highly irritable 10/2-10/5
Lost patience with son
Ice pick headache 10/2 through 10/6
Depressed 10/3; Happier 10/4; Stressed but neutral 10/5
Depressed week of 10/13 (what happened to the week in between — who knows?!)
Great day with my son 10/12.
So much stress. Obsessing over ACA plans and next year’s schooling.
October 15th very happy and productive
Woke up 10/16 and 10/17 miserable. In bad moods both days. 10/17 angry as f*ck at my husband (going to exclude the rest of that comment)
10/19 Obsessive all last week. Today I am not at all. Pretty ok today.
I shall continue my list with 10/20 being a pretty good and productive today. Today, I woke up gloomy/tired/foggy like the weather but I have “snapped” out of that a bit and am starting to feel productive and neutral.
Well, there goes my last 3 weeks! I see my psychiatrist on Friday and will fill her in as well.