Handling an RA Flare Badly

I’m still alive and kicking. Unfortunately, I had an awful RA flare that lasted for the past two weeks. Normally RA flares leave me practically bedridden, giving me plenty of time to blog – mostly about symptoms and pain. This time, I had too much that had to be done. Christmas preparations, work…stuff…, Oliver’s Harry Potter themed 11th birthday party…the list goes on.

Instead of resting, I pushed through the exhaustion, fever, and pain until I was in a miserable state and nearly hospitalized. Now I’m on a mega-dose of prednisone. I had cut back to 2 Ultram a day, and I’m up to 6-8 pills a day again. I had hoped the guaifenesin would allow me to stop taking Ultram daily, but no such luck. I’ll just be glad to be off prednisone.

If there was time, I’d write another story about Dee. Dee is an accidental nexus of drama so there is almost always a Dee story.

 

 

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.

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.

Illusion of Normalcy

Today has been a bad pain day but not a bad fatigue day. I stubbornly decided to take the maximum amount of pain meds and muscle relaxers and plow through as many chores as I could while I had the energy. I will pay tomorrow. However tonight I’m glad to go to bed feeling like I’ve accomplished something.

Lately my reserves have been empty. I’ve had no extra money, energy, or time. I’ve been feeling defeated because I accomplish so little and every choice seems impossibly difficult. (I spent several days trying to decide if I deserve and can afford pants, for example.) It’s nice to go to bed with a clean house, clean laundry, and freshly dyed hair. Tonight I feel like a normal person (who doesn’t have RA and fibro) who accomplishes normal things (like cleaning the house on a Sunday.)

Sal-Free Shopping Part 2!

I’ve finally gotten all the salicylate free items I need to begin guaifenesin therapy for fibromyalgia. I plan to begin guaifenesin therapy by the end of this month. It’s taken forever to start guaifenesin because I have so little spending money to buy the products I need to replace. I have to wait until the end of the month to ensure our needs are met before purchasing wants like new cosmetics, soaps, and shampoos. At the end of February, I had $50 left in the budget so I placed an order from Ulta.

The hardest products to replace have been foundation and hair supplies. Prior to going sal-free, I was following the curly girl hair styling method which involved using all natural hair products and avoiding silicone. Now, since I’m going sal-free, the only curly hair products available are full of silicones. I see a much shorter hair cut in my future…especially since my hair is thinning again for no discernible reason. My hair has thinned out at random a few times since I began experiencing autoimmune symptoms so I can only assume thinning hair a symptom of RA/fibro.

Here’s what I ordered from Ulta:

Frizz Ease Serum
Frizz Ease Serum for smoothing my curly ‘fro hair

 

 

 

 

 

 

 

 

 

 

Frizz Ease Gel
Frizz Ease Gel for defining my curly fro hair

 

 

 

 

 

 

 

 

 

 

 

NYX Shadow 1
NYX Matte Shadow in…some light beige shade which I don’t recall the name.

 

 

 

 

 

 

 

 

 

NYX Shadow 2
NYX Shadow in a darker color which I also don’t remember the name.

 

 

 

 

 

 

 

 

Loreal Magic Lumi
L’Oreal Lumi Foundation (since the other foundation I tried did not agree with my dry winter skin.

 

 

 

 

 

 

 

 

 

 

 

 

 

NYX Lipstick
NYX lipstick in 2 colors. I got these because they were BOGO 1/2 off and I had 1 lipstick.

 

 

 

 

 

 

 

 

 

 

Maybelline Brow Drama
Maybelline Brow Drama to fill in my invisible eye brows.

 

 

 

 

 

 

 

 

 

 

Maybelline Brow Precise
Maybelline Brow Precise to make my freshly filled in brows look more realistic.

 

The Pre-Guaifenesin Purge

Still here. Still fatigued but not as exhausted as I felt over the weekend. That’s good right?

For those who asked by comment and email:

Yes, I’ve had labs. I recently had a thyroid panel which includes TSH, T3, T4 and maybe another test that I can’t recall. I’ve also had a CBC, or complete blood count, to check for anemia. I’ve had a metabolic panel to check liver function, kidney function, cholesterol, glucose, and a whole host of other things that don’t typically cause one to feel miserable.

Fortunately my labs are normal. Unfortunately I feel like crap.

The Pre-Guaifenesin Purge

I strongly suspect that fibromyalgia is responsible for my current misery. RA causes pain, swollen joints, low grade fever, and in my case weird skin rashes when I’m having a flare. I feel fatigue when I have an RA flare like you feel when you’re recovering from an illness. What I’m experiencing now is that I have no energy to begin with. I layer exhaustion on top of fatigue. It just doesn’t stop.

My next “step” (and by “step” I mean, treatment I’m going to try) is guaifenesin therapy. To treat fibromyalgia with guaifenesin, one must first rid all person hygiene items of salicylates which includes nearly every plant extract. Per the literature, guaifenesin therapy will not work if you are using any products containing salicylates/plant extracts. Starting guaifenesin for fibromyalgia treatment is pointless if you’re using salicylate products because the salicylates are easily absorbed by skin and block the guaifenesin.

For the past few days, I’ve been looking up the ingredients on products I have already purchased. I can keep my eye shadow, blush, bath soap, and one lipstick. I need to shop for: shampoo, conditioner, hair gel, brow filler, foundation, powder, hand soap, toothpaste, facial cleanser, facial lotion, eye makeup remover, body lotion, eye liner, and mascara. Hopefully Jonathan makes a little extra this month so I can begin shopping for some of the products I need. My current shampoo and conditioner are nearly empty.

Since guaifenesin is reported to make fibromyalgia symptoms worse at first, I need to wait at least a week before I can start the therapy because I’m on 24/7 call rotation for work.

If I keep feeling like I’ve been feeling, the next 7 days are going to be hard. I’m tough though. I’m sure I’ll make it out alive.

Fatigue: Will it ruin childhood?

After a week of super-sickness, I spent a few days at the beach with friends.
After a week of super-sickness, I spent a few days at the beach with friends.

Much like a bad pain day, autoimmune fatigue is hard to relate to if you’re not autoimmune. It’s like the exhaustion you feel when you’re coming down with the flu or a nasty sinus infection, but instead of subsiding after the illness is over, the fatigue is always there grinding away in the background. Before I was diagnosed, I thought I was just a lazy person who lacked the motivation to stay awake. Now I know differently. My immune system is constantly “sick”; constantly at war with the rest of my body.

A few weeks ago, I was sick – as in sick with germs – and I’m still recovering. It takes a long time to get back to normal when I catch a pathogen, so I try to avoid catching even a sniffle since I know it will be weeks before I recover. The asthma symptoms have decreased from potentially life threatening attacks to mildly annoying. I’m finally off prednisone, however, and I’m thankful for that. I still need a steroid inhaler, generic mucinex, and a rescue inhaler so I don’t wheeze while I’m at work.

Fatigue is my biggest struggle when I’m recovering. I constantly feel weak and tired. To manage the fatigue, I’ve been taking a nap every evening after work – sometimes for 3-4hrs – so I have energy do chores around the house. Since I’m moving next week, I’m running out of time to get things done.

My biggest worry about living with Jonathan and the kids full time is how they will react to living with someone who, through no fault of my own, is constantly sick and tired. I worry they will think I’m lazy on days…or weeks… I need to sleep after work to control the crushing fatigue. Growing up, my mother suffered from serious mental illness. She either slept all day and left me to fend for my brother and sister or, when awake, was horribly abusive. I don’t want Luke’s or Oliver’s memories of childhood to include me being absent from their lives, ignoring them, in bed asleep.

 

 

 

Asthma, Asthma, and More Asthma

Day 3 of antihistamines. Day 7 of the steroid inhaler. Does anyone else feel extremely drowsy after taking “non-drowsy” antihistamines like Zyrtec or Claritin? Maybe I’m a weirdo, but, even though I should take an antihistamine every day, I just can’t manage the crushing fatigue.

Since my immune system is busy destroying my joints, I often feel worn out anyway. Adding a medication which causes drowsiness on top of the grinding fatigue is more than I care to tolerate. I work full time. I live alone. I have a house to maintain, pets to care for, work to go to, and occasionally a social life. I don’t want to spend the only bits of free time I am afforded sleeping.

However, I also don’t want to spend every waking moment feeling like cinderblocks are piled on my chest slowly squeezing the oxygen from my lungs. Asthma causes fatigue as well. Obviously, if you’re not getting enough oxygen, you’re going to feel tired…and cold. The icicle extremities are particularly annoying. “Oh, I feel fine.”, I say when coworkers ask…except my hands and feet feel like they may completely freeze off, I’m exhausted, and I feel like an elephant is sitting on my chest.

Adventures in Autoimmune Disease: Asthma

I can’t breathe. Asthma, I’m sure. Always allergies, asthma or pain…I haven’t been taking an antihistamine because it makes me feel so tired. Guess it’s time to deal with the antihistamine fatigue on top of the fibro-fatigue so I can suck in enough oxygen again.

Allergies are a common condition for people with autoimmune patients. Our immune systems are crazy.