My previous rheumatologist retired unexpectedly. After months of waiting, I was finally able to see a new rheumatologist. She ordered new labs, questioned my current diagnoses, and (of course) recommended I stop taking pain meds.
Yes, she said I should stop taking Ultram. In her opinion, I should completely stop taking the only medication that has allowed me to remain active and functional. I should stop taking Ultram, which I’ve taken for a few years now, because some people become addicted to Ultram. <insert grumpy eye rolling face here>
I am not addicted. After several years of taking Ultram, I’m unlikely to become addicted (less than a 1% chance, actually). I only take Ultram to reduce the exceedingly high levels of pain which I experience daily. I don’t even take enough Ultram to eliminate the pain, just reduce the pain so that I can function and focus on something other than, well, being in excruciating pain.
So, even though I am supremely irritated with this course of treatment, I’ve started the slow process of tapering off Ultram. I don’t want to be written off completely as a non-compliant patient (which is what happens if you are both fat and do not do exactly as your doctor recommends). This week, I reduced my dosage by 25%. I’m already experiencing a marked increase in pain and pain-related sleep disturbances. Things are only going to get tougher from here as I return to my excruciating, pre-medication state. I really don’t want to go through this. I can only hope that there are other pain relief options which may work for me.
I paid dearly for behaving “normally” yesterday. I could barely walk when I woke up this morning and I was still limping severely when I arrived at work. Coworkers stared and asked one another what was wrong with me. I wonder why people don’t just ask the person doing the limping? I’d tell them I have RA. I’d tell them I over did it this weekend and my hips, knees, and feet are reacting in typical RA fashion. Limping (or walking oddly) is something that I deal with from time to time and, while I used to be ashamed, now it’s just part of life.
All day at work I felt like I needed a shirt that explained I have RA in big bold letters so people would stop speculating. The worst speculation was that I’m limping because I’m an unhealthy, lazy, lard ass. (When you say rude things about someone, the subject always finds out through the grape vine.) Yes, I am fat. I’m over 5’7″ and weigh 240lbs. I wear as size 18. I’ve gained weight from taking steroids to control RA and because RA limits my ability to exercise. However, I’m no lazy lard ass. I’m a whole foods vegetarian and I eat that way to help control inflammation – not to make other people happy. I get up and do what I can whenever I am able because I’m tough and I get things done in spite of my diseases. How dare people pass judgement on my health based on my weight!
Losing weight doesn’t fix RA. Losing weight doesn’t fix fibromyalgia. In fact, I was much sicker when I constantly focused on losing weight! Some people are astonishingly ignorant.
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.)
I’m keeping the pants. Not because I have money to afford pants, but because a 2nd pair of pants ripped today. That leaves me with 3 pairs of pants to wear to work. Three pairs of pants is not enough. Therefore, I keep the pants I can’t really afford because I need them. Hopefully Jonathan will earn extra this month and I will be able to afford the pants after all.
I won’t be able to purchase guaifenesin until April. I won’t be able to purchase anything until April, really.
My stomach has been terribly upset for the past 2 days. I suspect I may have a stomach virus. It is quite difficult to cook dinner for everyone when you are nauseated. Of course I persevered. They don’t know my stomach has been upset. I don’t bother Jonathan, Luke, and Oliver by telling them every little thing since I am chronically ill and often sick.
Besides, Luke has bullies to content with, Oliver is dying to go to a summer camp with horses that costs $300, and Jonathan is suffering with insomnia again. They have their own struggles.
I accomplished a lot today in spite of feeling sick. I worked from home for 9hrs and took Jonathan to pick up his newly repaired truck. Then, I washed out the big dog’s crate, did 3 loads of laundry, did 2 loads of dishes, gave the medium dog a bath, cleaned the bathroom, and cooked dinner. I’m quite proud that I sneaked shredded vegetables into the sauce for the baked spaghetti. Picky eater Oliver consumed servings of vegetables without even realizing! Parental achievement unlocked!
Having a rough evening with Luke. He elected not to start his homework until minutes before bedtime then stay up for an additional hour sobbing about math instead of completing his homework. Jonathan finally lost his cool and shouted at Luke because Luke has behaved badly for a few days and his homework shenanigans were the last straw.
I made it through walking 2 miles after dropping Jonathan’s car off an oil change and inspection this morning. A two mile walk up and down a hill is only possible on a good pain day. I’m fortunate to have two days good days in a row. Maybe the weather will stay temperate and I’ll have a good week? I hope so. Most of the winter has been lost to severe pain, crushing fatigue, and a host weird symptoms. Having a normal person week where I feel well enough to do normal things would be a treat.
Jonathan and I are still struggling financially. I thought I would have enough to buy a new pair of jeans this month since a pair I’ve had for years got an irreparable hole in the crotch. Now I think I’ll have to return the jeans I’ve ordered to stay on budget. Jeans are one of the few items of clothing I buy new. I’m taller than average so most jeans and slacks are 2-3″ too short. Ordering tall jeans (on sale, of course) is the only professional looking option since I wear jeans to work. If I keep the jeans, I won’t have any spending money next month. Do I keep the jeans I need, or return them just in case?
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.
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.
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.
Since visiting the dermatologist, I’ve been following the recommend eczema protocol. However, the dermatologist didn’t seem certain I had eczema although he diagnosed me with subdermal eczema.
The rash isn’t rough, the skin is not broken or cracking, and applying Vaseline seems to aggravate my skin instead of help. Also, my skin itches intensely – as in it causes me to lose sleep because the itch is so severe. While I don’t have patches of broken skin, I do have lesions. The lesions are shallow and about 1cm in diameter. I also have blisters – small fluid filled blisters which are independent from the lesions.
My hair is falling out.
I have a blister on my tongue.
The eczema therapies aren’t working.
Is this really eczema??? Do I have another autoimmune disease affecting my skin? My PCP believes that my skin rash is autoimmune and NOT related to eczema, which differs from the dermatologist’s diagnosis.
Meanwhile, I’ve switched back to moisturizing my skin with my own coconut oil cream recipe. It seems to be slightly more effective than vaseline at controlling the itching and it doesn’t leave a slimy, gooey film on my skin. This is a maddening situation.