Medical Shenanigans Part II

The rheumatologist’s nurse called me today. My labs are abnormal. My sed rate, TSH, and T3 are high. The Sjogren’s antibody test was negative. The rheumatologist is referring me to an endocrinologist. The endocrinologist doesn’t have appointments available for three months. Another day, the same medical shenanigans.

I tried to explain to the nurse that taking oral contraceptives can cause an elevated TSH and elevated T3. However, the nurse didn’t understand the difference between a T3 hormone level and a thyroid antibody test. She kept telling me that my “T3 antibodies are elevated”. That statement doesn’t make sense. T3 is triiodothyronine which is a hormone level, not an antibody. TPO and Tg are antibody tests but she couldn’t tell me if the rheumatologist ordered an antibody panel. The nurse snapped at me for questioning her…for having more medical knowledge about this topic than she does, really. Again, same medical shenanigans, different day.

Now I have the “pleasure” of waiting months for treatment again. Just when I felt I was starting to make headway with treatment, or at least have a diagnosis, it all gets turned upside down. If I had an option, I’d quit medicine. I’d quit seeing doctors, making appointments, having tests – all of it. I’d just move on with my life and focus on something-anything- other than how much time I spend feeling sick.

(Oh! And the Sjogren’s antibody testing being negative? That doesn’t really mean I don’t have Sjogren’s. The test has a 30% false negative rate. Sigh…)

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New Rheumatologist. New Recommendations.

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.

The Guaifenesin Helped

Today I’ve suffered through lower back pain all day. I tried all the back pain remedies – pain meds, muscle relaxers, heating pad, gentle stretching…nothing helped. This is the sort of back pain I experience just before I get debilitatingly severe back pain. Today the pain has been a strong, nagging ache. The next stage of back pain feels like someone is trying to saw through my lower back with a steak knife. It’s excruciating. It’s hard to sit, stand, work, or even sleep with debilitating back pain.

Interestingly, I didn’t have significant back pain while I was taking guaifenesin. I’m fairly certain this wasn’t placebo effect because I did not expect guaifenesin to work reduce pain, especially chronic back pain. I’m going to start taking guaifenesin again and up my dose from 200mg 2x/day to 400mg 2x/day. Guaifenesin is also known to thin mucus so I had fewer asthma and allergy symptoms while I was taking it – an important benefit.

Here’s to guaifenesin! Here’s to hoping my back ache doesn’t become debilitating because I don’t have time for that misery!

The Math Mega-Tantrum

I came home from work feeling defeated and ready to flop across my bed and cry myself to sleep because the pain had been so unrelenting today. I took meds, I stretched, I drank water…nothing helped for long. The pain invaded every thought, every activity, every minute. Constant, unrelenting, grating pain.

Flopping on the bed in tears after work wasn’t a viable option because Luke and Oliver needed dinner, showers, homework checked, papers signed, order forms filled out, etc. The cats needed dinner. BigDog needed training time. MediumDog needed attention and dinner. I gulped down a few more ultram to take the edge off so I could function.

Shortly after I got home, Luke threw a mega-tantrum over his math homework. Luke is 12, but he was crying, shouting, screaming, and acting like a child half his age. Luke regresses when he feels overwhelmed. Lately, Luke has been declaring that he wants to kill himself whenever he feels frustrated making it difficult to determine if Luke is just going for dramatic affect or if Luke actually intends to commit suicide. Do I rush him to the psychiatric hospital to be committed because he intends to harm himself or do I refuse to take his comments so seriously?

After 2hrs of mega-tantrum, Jonathan took a break from gardening to grumble at Luke for having bad behavior. It didn’t really help. Jonathan didn’t take Luke’s suicide threats seriously. Per Jonathan, I wouldn’t take Luke’s threats seriously if I had “raised Luke from the beginning”. Luke demanded that I walk to his room repeatedly even though walking was very difficult for me and he just wanted to ask a question about his homework. I understand Luke was upset, but I wish Luke would understand how much pain I experience at times. I try to explain it, but I’m not sure he truly understands. If he understood, he wouldn’t refuse to leave his room and demand I come to his room to answer questions on days like today.

These days, Jonathan spends most of his time outside gardening while I do the house chores, cooking, animal chores, and take care of the kids after work. In the morning, Jonathan sleeps for 3hrs after I wake up to get the kids and myself ready for school.(This doesn’t bother me, however, because Jonathan is in a rotten mood in the mornings) I’m hoping Jonathan’s garden endeavors pay off in much lower grocery bills this summer. I’m hoping that I’m not stretching myself thin and dealing with everything on my own just so Jonathan can dig in the yard.

The Impact of the Awful Pharmacy

Spending a week or more without the meds I had been taking has had some interesting side effects. Along with the typical withdraw symptoms of shaking, sweating, nausea, and headaches, I’ve experienced a migraine, insomnia, night terrors, severe pain, and – the worst so far – a TMJ flare.

I deal with pain and weird symptoms daily (as regular readers know), so the withdraw symptoms were uncomfortable, but I’m accustom to feeling uncomfortable which made the symptoms tolerable. I haven’t had night terrors in years and I chalk the night terrors up to suddenly being without Lexapro (an antidepressant). Mess with your brain chemistry, the brain comes up with some weird stuff.

The TMJ flare has several causes. I ran out of pain and anti-inflammatory meds which caused widespread body pain which, unfortunately, caused me to unintentionally clench my teeth. Clenching teeth aggravates TMJ. Going off pain and anti-inflammatory meds which allowed the TMJ symptoms to worsen. So, for the past week, I’ve had intense jaw pain, severe daily headaches, ringing in my ears, and an oddly swollen face. On top of all that – I’ve had insomnia since the jaw, ear, and headache pain are just out of control.

In summary, the awful pharmacy has really screwed up two weeks of my life because they just decided not to refill or send my meds. They’re now calling their mistake a “clerical error”. Clerical error my ass.

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.)