Luke and Laundry

Luke refused to take his meds this morning. He was shouting at me that he feels like his meds make his math grades worse. His math grades were bad before he started taking meds, mind you. I asked him if he was having any other negative side effects and he said he wasn’t – he just didn’t feel like taking the medicine any more because he “doesn’t need it”. His final words to me this morning were, “Fine. Tell Daddy. He’s not going to make me take [my medicine] so what are you going to do?”

Jonathan heard this and came angrily stomping upstairs shouting at Luke while he was still feet from the kitchen. Luke quickly took his meds, but Jonathan was done with Luke’s behavior at that point and they both got into a huge argument. Jonathan was angry that Luke was having a bad attitude and using him as leverage to defy me, but Jonathan was EXTREMELY ANGRY that Luke’s shouting woke up both Jonathan and Oliver.

This morning didn’t go well, needless to say. Luke left the house with his face red from tears, but medicated. Jonathan left the house in a rotten mood. Oliver left the house feeling irritated because he was woken up by his brother’s tantrum. I left the house late, but not because of Luke’s behavior.

I had to load the car with laundry this morning – 8 loads of laundry to be exact. Since the washing machine is broken and we don’t have laundromats near our house in the country, I loaded the car with laundry before work so I could do laundry in town after work. A visit to the laundromat cost $35 now! I can’t believe it. If I didn’t have a washing machine, I’d have to wash laundry in the bathtub. There is absolutely no way I could afford $35/week.

It took so long to finish the laundry that I didn’t get home until nearly 9PM. Jonathan “forgot” to make dinner for the kids so I still had dinner to make, a kitchen to clean, a car full of laundry to unpack, beds to make, a shower to take, and pets to feed. The kids ate chicken nuggets and mac & cheese while the regaled me with tales of the most recent episode of Super Natural they had watched and how Oliver can earn prizes through the school fundraiser…but only if I sell fundraiser items for him since he doesn’t know anyone who will buy items from him.

What a day. At least I’m feeling better today than I’ve felt for the past 2 days.

“Twerking Harry Potter”

Today Sucked.
(And I can’t even replace my worn out clothes)

Today was a bad day. I often feel physically bad, but don’t often have what most people call a bad day. Today I felt physically miserable and everything went wrong. There are so many things I cannot write about because it will reveal my identity or location. So I’m left saying only that today was a horrible day.

I bought more guaifenesin today even though I technically didn’t have the money. I figure that if it helps me feel even a bit better, it will be worth the grocery money I spent. Naturally I bought the smallest bottle available.

Tonight I added new clothes to an online shopping cart. Of course I didn’t complete the purchase. I have no money. But window shopping for a while and pretending like I had money was fun. Having money to replace some of my worn out clothes would be lovely. It’s just not in the budget.


 

“Twerking Harry Potter”

Physically, I’ve been extremely achy and exhausted. I can barely hold my eyes open. I had to take a nap again when I got home from work because I was too miserable to cook dinner. I woke up a short time later to the kids misbehaving. Oliver threw a empty plastic mop bucket at Luke’s head which had something to do with Luke pretending to be “twerking Harry Potter”. Luke was holding a huge icepack to the side of his head when he burst into my bedroom shouting about Oliver. It’s funny in retrospect but was extremely annoying as it was happening.

 

 

 

Struggling to Stay Awake

Jonathan has let the kids stay up waaay too late tonight. I remember when Jonathan would be in a grouchy mood if I let the children stay out until 8:30 on a summer, weekend night. I guess he’s forgotten how unpleasant the kids are in the morning when they don’t get enough sleep.

I’ve set a goal for myself to go to bed around 9P at night and wake up between 5-5:30A since I tend to have less pain and fatigue in the morning. I stayed up far too late last night because the kids wouldn’t go to bed and I haven’t felt quite right all day. When I woke up my ear was filled with fluid and I felt dizzy. Since then I’ve just been a ball of aches, pains, tiredness, and headaches. I tried to take a short nap at 7P which turned into a super long nap when I slept through my alarm.

Naps aren’t allowed. Last year Luke told his school administrator that he “never knows when [I’ll] be asleep or awake. I think Luke said this because he didn’t want to wake me up from a nap to ask for help on an assignment. Although I’ve told Luke it’s ok to wake me up if something serious happens or if he needs help with school work while I’m napping.  However, the school administrator took Luke’s comment to mean that perhaps I am on drugs or guilty of child neglect – rather than being a person who works 50hrs/week in spite of having 2 diseases that cause fatigue.

Since I’d prefer to avoid a visit from CPS and/or a social worker, I’ve been doing my best to nap as little as possible no matter how bad I feel. Unfortunately, this doesn’t always work out. Some evenings I’m so drained and having so much pain that it’s hard to keep my eyes open. My body feels physically heavy and my eyes close no matter what and I have to rest.

The Rheumatologist is Weird

Jonathan’s Jobs

Jonathan found some jobs with potential to lead to more jobs. Fingers crossed this leads to steady work for him. Steady work and steady income would greatly benefit our finances.


 

The Rheumatologist is Weird

Yesterday, I got cortisone shots in my back. The rheumatologist worries me because he seems to think fibromyalgia is a mental health issue rather than a chronic pain issue. However, he does prescribe treatments for the chronic pain I experience and doesn’t treat me like a med seeker.

The rheumatologist drops little odd hints during our conversations about how much Lexapro I’m taking or needing to up my dose or needing to add another psychiatric drug to my current treatment plan. For instance, when I told him I was having problems with TMJ pain and headaches, he mentioned something about stress and adding an anti-anxiety medication. I explained that my level of stress is presently mild and taking 20mg of Lexapro has already made me a mood-less, unemotional zombie (obviously anxiety is not the source of my jaw pain). He seemed totally unconcerned that I was possibly overmedicated on Lexapro and said something that can best be summarized as “Good”. Then he suggested that I try a sports mouth guard while sleeping.

Dealing with the rheumatologist is weird. He treats the symptoms I experience, but also seems to feel the symptoms are almost entirely in my head too. Perhaps this is because he’s old enough to be my grandfather, deals with frustrated elderly people, chronic pain patients, and med seekers all day. I’m quite a bit younger (and more cheerful) than his usual clientele.  He is also very hard of hearing and has a cochlear implant for one ear and a hearing aide for the other.  Since I also have hearing loss, we sort of mumble at one another and only understand a portion of what the other is saying so I’m sure this does our ability to communicate no great favors.

Whatever the rheumatologist thinks of me, at least I have scripts of the meds that help for the next 6mo until our next appointment.

To Cortisone or Not to Cortisone

ThankYouTinyBabyJesus! Jonathan got some jobs! One of the jobs is so big that it may lead to a lot of work in the future which is definitely great news.

Tomorrow I have an appointment with the rheumatologist. I need to decide if I should get cortisone (steroid) shots in my back and/or jaw. Both my back and jaw are aching, but neither ache is severe right now. However, I’ve had intermittent severe jaw pain for months now and the back ache is prone to becoming severe. I won’t have another rheumatology appointment for 6mo and I’m not sure I can afford another copay if I have an emergency between tomorrow and 6mo from now.

Sigh…I should probably just put on my big girl panties and get all the cortisone shots.

Today Luke came up with the idea that if there was suddenly a pill that would cure RA and fibromyalgia, I would take it and we would have a throwin’-the-meds-away party. Luke is a sweet, empathic kid. Never change, Luke, never change.

Jonathan Has No Jobs

Change Jar

Change Jar

Jonathan has no upcoming work for the foreseeable future. Money is already tight. This just makes the money situation 100% worse. I’m already pinching every penny twice. I coupon regularly and plan out every meal. If it’s not on clearance, or at least heavily discounted, I don’t buy it.

I also know that sitting here stressing about money isn’t going to help the situation. Getting a 2nd job isn’t an option for me right now because I’m expected to be available 24×7 in case of emergency at the day job and I’m also not quite well enough to take on another job. Granted, I feel better than I have in the past, but I’m still low on energy and experiencing quite a bit of pain.

For instance, this week I stumbled on a toy and my ankle swelled to twice it’s size. I couldn’t walk up or down stairs properly for several days. My back has started aching again as well. I was bagging my own groceries at the store today and the pain was so intense my hands started to shake. When I got home I had to take a muscle relaxer and lie down.

This week I’m going to list some unused items on Craigslist to fill the gap. After those items sell, I’ll start considering opening an Etsy shop…or something else which accommodates my not-too-stellar health. I feel like, if I weren’t sick with two diseases that cause pain and fatigue, I would be so much more productive and we wouldn’t struggle so hard.

School / Guaifenesin Again

First Day of School

Today was the first day of school for Luke and Oliver. Oliver reported having a great day, demanded that I purchase a $20 binder for him that isn’t on his school supply list, then went on with being his silly self. Oliver has been obsessed with puns lately.

Luke reported having a terrible day. He said some kid made fun of his glasses and shoes and that he has no friends. BioMom decided not to rent Luke’s instrument for band on Friday when school started Monday. Fortunately I had a friend who was willing to let Luke borrow an instrument given the rental stores were sold out. I tried explaining to Luke that he can have friends who aren’t his age. He can have older friends and younger friends and middle friends. No one says he has to have only friends his age or even be friends with people at school if he doesn’t want to.

We’re on day 21 of Luke’s Strattera. His ability to focus has improved slightly. I’m hoping if we persist with Strattera, he’ll be able to focus better in school and feel less anxious so he can make friends. It’s hard to make friends when consumed with anxiety.


Health Update: Guaifenesin Again

When I woke up, I completely expected my back to hurt since I have been suffering through a backache for several days. To my surprise, my back didn’t hurt at all, but felt a little stiff. I started taking guaifenesin again last night but I expected several days to pass before I felt an improvement. I’m definitely grateful for the sudden reduction in pain. I will continue to rest my back as much as I can for a few days to help prevent another back pain flare since I have a tendency to overdo it when I’m feeling well.

Today I’ve just had some pain and stiffness in my shoulders and hands. I suspect this is related to work since I couldn’t take a break today. I ordered some flea treatment for the pets since I’m worried they might have fleas which make my easily irritated skin itch like fire. As much as I’d like to give them flea treatments ever month, I can’t afford Advantix every month.

Speaking of finances and things I wish I could purchase: I’d really like to purchase a Jawbone UP wristband. Not really to track fitness and obsess over calories, but so I can wake up without waking up Jonathan.

Since I don’t hear well, my alarm is set to a super-sonically loud volume so I can hear it in my sleep. Unfortunately this means that everyone with normal hearing can hear my alarm through the whole house. It would be great to wakeup without irking everyone in the house. Plus, it’s supposed to track sleep so it would help me figure out a sleep routine that maximizes my energy. When you have 2 diseases that cause fatigue, every little bit of energy matters.