Well…that felt like a waste of time off…

I finally had a few days off from work. Unfortunately, I accomplished next to nothing.

Thursday I was on rotation for work so I couldn’t leave my house and worked most of the day. Jonathan cooked Thanksgiving dinner. I’ve been struggling with miserable RA back pain so I rested my back as much as possible. I didn’t spend a moment of time with my side of the family. I do miss my grandmother, but I do not miss the family shenanigans so I’m not upset.

Friday, I was off work and wasn’t on rotation. I drove to Dee’s house to help her get her farm use truck off her round pen. The truck’s transmission is stuck in drive so the truck can’t be backed up. We disassembled the round pen so the truck could drive through and we parked it on the other side out of the way. I also hauled off some trash for Dee because she has absolutely no transportation and, since we live in the middle of nowhere, no way of hauling trash to the dump. I often feel frustrated with Dee, but I also feel sorry for Dee because she’s a lightening rod for bad luck and unfortunate events.

While I was at Dee’s, MediumDog rolled in a pile of horse manure then on a putrid deceased groundhog carcass. I gave MediumDog a bath at Dee’s. Lifting a squirmy 60lb dog into the bath tub did my back no favors. However, allowing filthy MediumDog into my car for the 40min ride home wasn’t an option.

Saturday Jonathan’s family had their Thanksgiving so I spent the majority of the day there helping Jonathan’s grandmother. She is still recovering from a lengthy hospital stay. The majority of the visit I just tried to stay out of the way and hide my significant back pain. Jonathan’s family is very kind and accepting. It was nice to enjoy a Thanksgiving meal without an undercurrent of hushed drama.

Today I gave MediumDog a second bath. Fortunately, MediumDog hadn’t rolled on any new putrid carcasses or feces, she just had the residual stench of Friday’s adventures. I also gave BigDog a bath because he’s a lab and labs always need baths. Washing two dogs and cleaning up the bathroom did my back pain no favors. I had to go grocery shopping tonight which I only managed because Luke rode with me to the store and helped lift groceries and load the car.

Three days off work and I haven’t accomplished anything I set out to accomplish. My office is still a mess, the bedroom full of clutter, I didn’t list any items on Craigslist or Ebay to earn much needed extra money, I didn’t seal the tile in the downstairs hallway or accomplish any other home improvement chores… At least the dogs don’t reek?

Pain Sucks

I’ve felt awful today. Not exhausted awful, just pain awful. My back, hips, and shoulders feel like they’re filled with burning acid and shards of glass. I exceeded the daily maximum of pain medication today and still couldn’t focus on work. I went to bed right after dinner because everything just hurt.

I probably need steroid shots. I really don’t want any more steroid shots – not because the shots hurt-  but because steroids cause weight gain and I’m tired of gaining weight. Steroids also cause skin to thin which leads to stretch marks even if I don’t gain weight. Both side effects suck. Being in pain also sucks.

Oh, and I’m itching all over again. I hope I’m not having a flare of the horrible eczema-like skin disease I had last winter. That’s the last thing I need.

Descent into Sickness

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.

Weird Day is Weird

Today has been…weird.

There’s a 6′ long garden snake trapped in the wall of my house.

BigDog is suddenly refusing to allow me to put him on the runner chain in our yard. He insists on being loose which wouldn’t be a big deal if he stopped annoying the neighbors by running through their yards and getting into their trash. BigDog’s penchant for roaming and his trash adventures are the reason we put him on a runner chain in the first place.

Luke did his homework without having a huge meltdown.

Everyone in the house was asleep by 9P except me (I’m usually the first to fall asleep because I wake up at 5A). Even Jonathan was asleep in spite of his insomnia.

Since I’m eating only very soft foods, the TMJ flare feels like it is beginning to subside. Hopefully it won’t go on much longer so I can go back to eating crisp, fresh, fruits and veggies. I miss apples, pears, carrots, cucumbers…even kale; all of which require more chewing than TMJ currently permits.

For the past 2 days, I’ve had a break from exhaustion-level fatigue. Of course I feel some fatigue, but I don’t need to lie in bed for an hour after work just to function in the evening.

The Awful Pharmacy

The past 3 days have been hard. I’ve paid for my day of normalcy with pain which had kept me from sleeping well which has led to extreme fatigue. To make matters worse, the pharmacy my insurance requires that I use still hasn’t shipped the meds I ordered almost 10 days ago. I’m cutting ultrams, orphenedrines, and lexapros in half to hopefully make them last until the meds finally arrive. I take lexapro, an antidepressant, for fatigue so halving my dose is making the fatigue from not sleeping well worse. I’m afraid to take more ultram so I can sleep through the night because if I run out I’ll have to suffer through withdraw.

The pharmacy is awful. Even the lady who answers the phone is terribly rude. She’s hung up on me several times. I wasn’t rude to her in the least, but she has no patience for answering questions…which is kinda her job actually since she’s the customer service person at the pharmacy.

Work has been a pain this week as well. I haven’t gotten breaks so the only time I’ve been able to leave my desk is to use the restroom. People often call my cell while I’m in the restroom. It takes 3 min for me to walk to the rest room, urinate, wash hands, and return to my desk. People cannot wait 3 min. I have more projects than I can complete and feel constantly behind and overwhelmed. My job is designed for men who can devote their lives to work while their wives take care of the children. My job is not designed for me.

I am grateful my job pays the bills. However, my job is definitely not my life’s purpose. When I consider the things I’d rather be doing, it feels like I’m wasting my life. Fibromyalgia and RA also make what I would rather be doing nearly impossible. It’s a catch 22, really. Outside of this blog, I encourage other people and don’t complain. This is the only place I have to talk about how frustrating my job can be.

Normal Day; Abnormal Life

I feel…normal. Of course I have some pain today because with RA and fibro, there is never a completely pain free day, but today I feel more like a normal person. I’m not covered in a mysterious rash or barely able to walk because my feet or knees are swelling.

Days like today are the random warm spring day before and after weeks of months of freezing weather. Out of the blue, one warm beautiful normal day to enjoy yourself.

Today I woke up early, made breakfast, cleaned the house, did some laundry, then went out with a friend later for dinner. It was wonderful to have a day to do normal things – the types of things I used to do before I got incredibly sick.

I hope you all had a great weekend too. 🙂

Pain, Pain, Go Away

Today is a bad pain day. My hands are aching and swelling. I can’t take my rings off my left hand because my fingers are so swollen. It hurts to walk, hurts to type, and hurts to sit or lie still. Bad pain days are the sort of days that take away your mental capacity to think of anything other than how bad the pain feels. I hope the pain and swelling lighten up soon. This is mentally exhausting.

Fibromyalgia and RA can die in a fire as far as I’m concerned.

Less Than

The weekend was excellent. Jonathan, Luke, Oliver and I had all sorts of adventures. We drove to the city and ate dinner together. Even though I had to work 3rd shift on Friday night, the weekend was still awesome.

Today, however, is the type of day that wallows in it’s own filth then hangs around like a bad taste in your mouth. Nothing has gone terribly wrong today, but nothing has gone well either.

The morning started with a flat tire. It was the kind of flat tire that slowly deflates so I was able to refill the tire enough to drive to a repair shop. I had to walk a mile from the repair shop to work with a swollen, hurting left foot. (Arthritis) A coworker gave me a ride to the repair shop at the end of the day which was nice. A huge bold was removed from the tire and the hole was patched.

Work was mediocre. Nothing awful happened, but nothing remarkable happened either. I ate a donut which didn’t taste very good. I tried to get a diet Mountain Dew from the vending machine, but the vending machine was broken.

After I got home things were going well…until I said something Jonathan didn’t like. He got up from the table, slammed his food into the trash, and stomped downstairs. Jonathan isn’t usually a terrible grouch. However Jonathan becomes a grouch when he has a bout of insomnia. The smallest things set him off and send him slamming and stomping through the house like a tall 2yr old having a temper tantrum.

Today was just one “ugh” inspiring event after another and it’s left me feeling in a funk. The kind of funk where you start to question your life’s purpose or life’s work. The kind of funk where you compare yourself to others (who didn’t grow up with abuse and poverty/ don’t have chronic illnesses) and you feel “less than”. I’m feeling very “less than” tonight.

Moving, RA, and Sneaky Blog Updates. Oh my!

Since moving to the new house with Jonathan and the kids, it’s been difficult to find time to update. Jonathan and I lie in bed together at night and he’s always stealing glances of my screen…mostly while I work in Photoshop or Lightroom. But his observation definitely prevents anonymous updates. If he knew I wrote about him anonymously online, he would be extremely angry.

Luke and Oliver (the kids) went back to school a couple weeks ago. I was surprised by how easily they transitioned to the back to school routine. Last year, even at the beginning of the school year, they whined and complained about showers and bedtime and lunches. This year seems to be much easier. Maybe because I wake them up each morning instead of Jonathan? I don’t know. Jonathan is notoriously grouchy in the morning. The kids and I have nicknamed Jonathan the “Grump-asaurus Rex”.

“The Grump-asaurus Rex is awake! You better have your shoes on and be ready to go!” 


 

My RA symptoms were in remission for much of the month. I only struggled with fatigue and a mild back ache. This week RA came back with a vengeance and I was stricken with crippling back pain. The pain was so bad I made an emergency appointment with the rheumatologist.

“How many days of work have you missed?”, the rheumatologist nonchalantly asked during the physical exam.

“None.”, I replied.

“You haven’t missed a single day of work for this?”

“No. I don’t miss work.”

 

Shaking his head in disbelief the rheumatologist gave me 4 cortisone shots, muscle relaxers, anti inflammatory meds, pain meds, and ordered two days of bed rest. I didn’t take the bed rest. Instead, I worked from home and took 10min breaks to lie on my back every 2hrs. I don’t miss work.

Normally I struggle to meet my own basic needs during a flare, especially a flare causing excruciating back pain like this one. This flare has been easier because Jonathan, Oliver, and Luke are so helpful. Chores like loading the dishwasher and feeding are unbearably painful without help.

Speaking of Jonathan, here he comes. He just finished leveling the basement floor to install tile and he’s ready to snuggle and browse the internet together before bed. We’re such geeks.

The Bad Pain Day

Tramadol (generic: ultram)
Tramadol (generic: ultram)

Today has been a bad pain day. If you’ve never experienced chronic pain, a bad pain day is hard to relate to, I suppose. Imagine falling down a flight of stairs and feeling sore for a few days from the fall then extend that feeling through every day of your life. Some days it feels like you just fell down the stairs. Other days it feels as though you’ve broken most bones in your body. And some days you feel sore but almost normal.

This morning the muscles in my hips and left leg are contracting into painful charlie horses which was a painful way to wake up. Even the muscles in my lower bad were tight and sore. I quietly hobbled downstairs to get some pain meds trying not to wake up Jonathan. Sometimes moving around helps so I tried doing some chores. It didn’t help.

Since it hurt to bend, it hurt to walk, it hurt to sit, it hurt to stand…basically every activity hurt, I decided to take a muscle relaxer. Jonathan woke up and it still took an hour for me to be ready to go thrifting because the cramps and pain were so serious. While we were shopping, I would have miserable shooting pains if I turned too suddenly or bent down to look at something. I would wince and try to breathe through the pain so the other shoppers didn’t think I was insane. Jonathan worried about me the whole shopping trip which drained the joy from looking at furnishings for our new house.

I needed to carry some small boxes upstairs and couldn’t because of the pain. I needed to clean, but couldn’t. I needed to pack boxes for the impending move but that was out of the question.

Today is the kind of day when having RA and fibromyalgia really, really sucks.