The Smell of Sandalwood

For our 2 year anniversary, Jonathan researched restaurants I might like and we drove to a small town about an hour from where we live to have brunch and visit a small strip of locally owned shops. He bought candles for me at the shop – sandalwood candles.

When I was 17, my mother kicked me out of the house and I lived with a friend for a while. Her family had a tiny spare room which I stayed in. I’d never had my own room before. I’d never had privacy or a door to close or a space to consider my own. The tiny room smelled like the single sandalwood candle I carried out of my mother’s house in a laundry basket. I didn’t own a suitcase.

Sandalwood smells like home. Well, the way “home” should smell if home didn’t smell like garbage, urine, stale cigarette smoke, mildew, and dirty dishes. Sandalwood smells like the way a home that I wanted to live in would smell: Calm, clean, and peaceful. Jonathan doesn’t know what sandalwood smells like home. I doubt I will ever tell him. He just knows I like sandalwood.

Stupidity at TheJob

The situation at TheJob is starting to get out of hand. They’re implementing a type of web filtering this week. Web filtering isn’t entirely bad, but TheJob has filtered sites for products many of us legitimately use to get our jobs done. Sites for with samples of code, note taking apps, the website we use to check our cell phone plans (we use our personal cell phones for work), etc.

I’m frustrated because this is a pain in the butt and a huge technological step backwards. Instead of typing notes on my tablet during a meeting, I am now to handwrite notes on paper then type up the hand written notes after the meeting and email the typed notes to the participants. Double the work. Every meeting. Everyday.

TheJob is also beginning a huge social media monitoring endeavor. I find this aggravating for a host of reasons, but mostly because we are expected to add TheJob’s social media profiles to our social media to show we’re “committed and engaged”. I don’t mention work on my social media profiles nor do I find what I talk about on social media to be any of TheJob’s business. The problem is, there will be consequences. Negative consequences always follow crappy policies.

Do I close my accounts or wait for the consequences?

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.

Vacation and Gustav The Intolerable

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.

Guaifenesin: Day 7 – The Itching

Today I’m itching all over. All my skin feels crawly and itchy. Did I get into something I’m allergic to? Did someone add fabric softener to my laundry on accident? Am I having a weird guaifenesin side effect? No idea.

My tongue is blistered and sore again. Eating has been difficult because of the TMJ pain. When I eat something that requires chewing, I worry I’ll be overcome with another severe headache.

Aside from the above symptoms, I’ve had less joint stiffness and body pain overall. I did take a nap this evening, but I was moderately tired instead of severely exhausted so that’s an improvement. Still drinking tons of water, but I see this as a positive side effect because drinking water is a healthy habit.

Fibromyalgia Awareness Day- May 12

A detailed, accurate account of how it feels to live with fibromyalgia.


Today, May 12th is Fibromyalgia Awareness Day. I know many people don’t know much about it. The commercials for the drug Lyrica, that I see on television from time to time, say fibromyalgia  is overactive muscle pain, but that doesn’t give it justice. Fibromyalgia is a life changer. It’s a fun taker, It’s a relentless pain giver. Taking one pill, 99% of the time, doesn’t help. I’ve tried Lyrica and my result was 70 pounds of weight gain. Needless to say, I couldn’t stay on it. I have a bag filled with medications, and I still have pain.

These are some of my symptoms: headaches, nerve pain, back pain, chronic fatigue, neuropathy,  irritable bowel syndrome, rib cage pain, carpal tunnel in both hands. I’m in pain when it’s too cold. I’m in pain when it’s too hot. I have dull pain, sharp pain, persistent pain and aching in my shoulders…

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Congress Trying to Suspend Civil Rights Protections at the Workplace

Ugh. This is just beyond words. Giving your employer access to your medical records? Um, no. Maybe that works out great for the few people who don’t have any risk factors for any type of disease, but for those of us with a chronic illness, this is a disaster.

Dances With Fat

DefendReader Ali let me know about some dangerous legislation that is on the table right now that would nullify important worker protections on the basis of genetics and disability of workers and their families.

As I’ve discussed before on this blog, the Affordable Care Act (which, full disclosure, gave me the opportunity to have insurance by insisting that insurance companies stop denying me coverage based on my BMI) also had some problematic things, including Workplace “Wellness” Program provisions that allow workplaces to penalize workers for not submitting to invasive blood tests and mental health questions and/or not participating in “wellness” programs regardless of whether or not there was proof of efficacy.

The Equal Employment Opportunity Commission (EEOC) filed a series of lawsuits claiming that these screenings and their associated penalties are in violation of the Americans with Disabilities Act (ADA) and the Genetic Information Nondiscrimination Act (GINA)

Enter Senator Lamar Alexander (R-TN)…

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whining about pain from work

At work. In a ridiculous amount of pain and there is nothing I can do about it. TMJ is causing my jaw to swell so I can’t open my mouth very well or without intense pain. No eating for me! Now I have a raging headache from the jaw pain and not eating. Today sucks. It’s super hard to focus on work with pain this severe. Sigh…

The Shoulder of DOOOM & Klepto-Luke

Radiator Heat
Radiator Heat

Shoulder of DOOOOOM

The temperature outside is far into negative degrees today. The entire house is maybe 50F which is very cold indoor weather as far as I’m concerned. Feeling half frozen is making it hard to get chores done.

Also, I’m still experiencing quite a bit of pain in my left shoulder – the shoulder I injured coughing earlier this week. I’ve been doing chores for 30 min, then lying down in the bedroom for 30 min. The only time my shoulder muscle relaxes is when I lie down and the only room above 50F is my bedroom thanks to the radiant heater.

The shoulder pain is extremely frustrating. I’ve figured out how to do a load of laundry and load the dishwasher without activating sharp, stabbing pain but I really need to vacuum, mop, wash the dogs, and go grocery shopping. I haven’t figured out how to do any of that yet. This is by far the most debilitating and frustrating injury I’ve ever endured from doing something normal (ie coughing). The pain is worse than getting my wisdom tooth extracted or fracturing my toe. I’ll be maxing out my ultram and orphenadrine ration for the day. As much as I dislike taking meds, I’m grateful to have mends on days like this.


In other non-illness news: Luke has been “borrowing” my things. Like, Luke goes in my bedroom when I’m not home and takes small things that don’t belong to him like my candle lighter, coins, a flashlight, and a small bottle of orange oil. Jonathan thinks I’m just misplacing things.

I thought I was misplacing things too until I was vacuuming Luke’s room. I picked up a towel from the floor beside his bed and several of my missing items fell out. When I asked Luke about the items from the towel, he completely denied borrowing, using, taking, possessing, or hiding them. I don’t mind when Luke asks to borrow my things, the problem is he’s not asking – he’s sneaking into my room, taking things, and hiding them.

I guess I’ll have to lock the bedroom door when I’m not home? Jonathan and I replaced the bedroom door knob with a key-lock door knob a few months ago because the kids were accidentally bursting into the room while I was getting dressed since the old knob didn’t lock. I guess it’s time to start using the key lock.

Cutting Back on The Small Joys

Yesterday I spent $20 on a shampoo, conditioner, and mouse. I feel guilty about spending $20 even though I was completely out of conditioner, nearly out of gel, and had maybe 3 washes left in the shampoo bottle.  I tried to buy reasonably priced items and the only reason I didn’t go cheaper is that I’m allergic to ingredients in many of the super cheap shampoos. The fragrance especially makes my scalp a red rashy, itchy, disaster.

My hair texture is also a bit of an issue because I can’t use “normal” hair products. My hair texture is big, puffy, curly-wavy, a bit like Lorde’s hair so I need lots of conditioner and gel to keep my hair from turning into a big, tangled, smelly ball of frizz. I could write an entire post about my hair, honestly.

I used to enjoy buying hair stuff and cosmetics. Now, since I take care of 4 people on one income, I dread purchasing anything no matter how small.

Saving money on such a tight budget takes an OCD-like level of financial self discipline. You have to compulsively not spend. No treats. Only necessities and even then only necessities which are on sale.

I came across this article while scrolling through Twitter. It’s true that eating lunch at your desk, cooking at home every day, and limiting outings with friends to save money definitely limits the small joys. I haven’t found some [free] small joys to take the place of small joys which involve spending money yet.

Tomorrow will entail a trip to a different store in town to pick up more supplies to start guaifenesin protocol. I suppose I could go without any makeup at all, but my skin is such a mess I’m sure it will attract negative attention at work. I’ve always been prone to red splotchy skin and, in spite of having medium tone hair, I have clear lashes and brows – a bit like Tilda Swinton’s brows and lashes, only more clear and less white-blond.