Today was the first day of summer school for Luke. When he came home, he told me he was the only student prepared for the day with a back pack and school supplies like paper and pencils. I wonder how many of those kids’ parents can’t afford back packs, paper, and pencils.
We struggle financially – as in we don’t have money for extras – but we aren’t poor-poor. To me poor is the way I grew up where your parents can’t find money to get you new shoes even tho you really need them or when you have to wear too-small clothes to school because your parents can’t afford clothes that fit you. We may shop at thrift stores, but I only buy clothes that are new with tags, or obviously new without tags for the kids. I save up and wait for end of season sales for new-new clothes. Sometimes, albeit rarely, I can even afford brand name clothes for the kids if I find a good sale.
For all my frustration with money, I can afford necessities. Even though I fret about how I’m going to pay off the $700 car repair bill, the $250 AC repair bill, and the $$$ we’re going to have to pay to fix the leaking plumbing downstairs, at least I can afford essentials. At least my kids don’t go without.
Tomorrow will be Luke’s first day of summer school with glasses. This is the first pair he’s needed. He chose a pair that he likes and I’m ok with, but I’m worried his glasses won’t be in style and other kids will tease him. Please please PLEASE let other kids NOT tease Luke about his glasses.
Today has been a typical day for the most part. I woke up before the sun rose to do chores in my air conditioned house. I struggled with fibromyalgia pain all day and needed more Ultram than usual to make it through a full day of work.
Tongue Blisters O’ DOOOOOM
This week’s super weird symptom is tongue blisters. Not canker sores or cold sores, but large, inflamed, blistered taste buds. Whatever the cause, these mysterious blisters are extremely painful. It hurts intensely just to swallow and talking feels worse than getting salt in a paper cut. I’ve struggled with tongue blisters for a few months now, and I think Optivar allergy eye drops could be the culprit. I ran out of Optivar by accident and the tongue blisters disappeared. Now I’m conducting one of my medication experiments. Stop meds and journal, start meds and journal, stop meds and compare journals, repeat if results are inconclusive.
Guaifenesin seems to be helping overall. I’m much less tired than I was before I started taking it. My hair seems to be falling out less – this was a big issue over the winter. Although I still have bad pain days like today, the frequency of the bad pain days has decreased. I’ve been taking 200mg 2x/day for 1.5months now.
So far, we’ve had air conditioning for 2hrs and 20min. I think Jonathan may have fixed the AC for good this time. Thank you TinyBabyJesus. The upstairs was 91F when I got home from work and the downstairs was only a few degrees cooler.
No more heat rash/heat eczema. No more slimy sweaty scalp. No more sweating my makeup off before I completely apply it in the morning. And NO MORE COOKING IN THE INFERNO OF A KITCHEN!
I appreciate the many generations before mine that went without AC on 97F, 97% humidity days. Those were some tough people.
The temperature was 95 degrees at 97% humidity for most of the day. It has been so hot that the dogs preferred to lie on the tile floor in the basement instead of going outside.
I woke up at 5A to clean before the house warmed up. I’ve been waking up early every morning to close the windows, shades, and curtains to trap the cooler evening air. It makes the house tolerable until 11 or so.
During the heat of the day, I tried to stay out of the house as much as possible. Luke and I went thrifting in search of shorts that fit. Luke, of course, got fed up with shopping after a little less than 1hr and wanted to go home. Then, I picked Oliver up and went grocery shopping. At first Oliver didn’t want to go, but he was glad to be in an air conditioned grocery store once inside. We took our time walking leisurely through the aisles since it was the only chance we had to cool off.
Although it wasn’t in the budget and I honestly can’t afford it, I purchased inexpensive desk fans for Luke and Oliver. They were just so sweaty and miserable. Plus, I have a fan in my room and I didn’t feel it was fair for me to sleep somewhat comfortably downstairs while they roast in their beds upstairs.
I remember growing up without air conditioning. My mother was so paranoid of home invasion and robberies that she kept the windows closed and locked every night no matter how hot the day had been. Sometimes the temperature inside the house was over 100F. I tried to get comfortable enough to sleep, but the sheets would cling to my sweaty skin as I tossed and turned for most of the night. Sometimes I’d try to sneak into the basement, where it was cooler, but mother wouldn’t allow it.
I don’t want my kids to feel miserable like I did. The oppressive heat wasn’t the only cause of my misery. My mother was abusive. The oppressive heat just to added a suffocating layer to her oppressive parenting style. No one dared get out of bed at night for fear of getting screamed at or beaten no matter now miserable we were. I won’t put my children through that sort of misery.
The relative wellness I’ve enjoyed for the past month has come to an end. I don’t know if long hours and lack of sleep are the cause or if it’s just flare time with no cause. The pain in my hands, back, legs, and shoulders has returned. I’m very tired, but not quite exhausted. Today I had a headache so severe I couldn’t get out of bed for hours, let alone make it to the birthday party I promised to attend. My descent into sickness is disheartening.
Today the temperature is 95F (35C) and the air conditioning is still broken. Jonathan and I have ordered parts and attempted to fix the AC, but haven’t been successful. We don’t have hundreds of spare dollars to spend on something that isn’t an absolute necessity. It is very likely that we’ll be without AC for the summer as temperatures climb into the 100s. Humidity is also a huge problem in the summer. On a normal summer day humidity averages between 70-90% making the heat all the more suffocating.
It is possible that feeling completely sick and awful is due, in part, to trying to make it through such hot temperatures doing something other than lying in bed. While I do feel physically miserable, I also feel like accomplishing something other than lying in bed. I suppose this is the catch 22 of the chronically ill person. We don’t lie in bed because we have nothing better to do with our lives or because we somehow find it fun – we do it because we have no other choice.
Luke has stopped eating. He is convinced he’s fat. So, now, he only eats dinner so Jonathan doesn’t know he’s not eating. I am in recovery from an eating disorder (ED) myself and it takes one to know one. Luke is heading down the slippery slope to ED Hell and I feel there is nothing I can do to stop him.
The results of the learning assessment showed Luke’s IQ to be in the intellectually disabled range. Is he *really* intellectually disabled? Can anything I say get through to him and help him understand how horrible EDs are? How EDs steal your identity, zap your energy, ruin your health and life? I just don’t know.
*I’m having a very hard time typing because I’m in the midst of an RA/fibro flare brought on by working night hours and not getting consistent sleep. Being chronically ill makes sleep critical in a way it wasn’t before you got sick. Pls excuse errors*
The psychologist also mentioned Luke has mild OCD symptoms which may not be OCD, but a coping mechanism for anxiety disorder. OCD symptoms are the reason Luke “collects” my things. Only my belongings bring Luke a sense of comfort which is flattering and supremely annoying.
ADD is normally treated with stimulants since ADD is an issue with brain stimulation. Because Luke has anxiety disorder, we can’t follow the standard ADD protocol without making his anxiety symptoms worse. If we treat the anxiety, the ADD may get worse. It’s a frustrating situation.
One thing is certain: Luke needs meds to function. If Luke doesn’t get meds, he’s going to keep failing school and continue developing negative coping mechanisms or slip into severe depression. Biomom doesn’t want Luke to take meds under any circumstances no matter how necessary or dire. Jonathan has slowly been persuaded to agree that meds are worth a try if they help Luke function better and feel more satisfied with life. Normal moms can make decisions to medicate a child on their own. I cannot. I have to hire a lawyer.