Medical Massage edition

Good morning, Thursday 12/29. My heart and mind are reeling from death of both Carrie Fisher and her mom Debbie Reynolds. One of the celebrity deaths that is impacting my life. That mother/daughter relationship was the first one to open my eyes to issues. Debbie could not live in a world without her Carrie.

I woke with backache and migraine. The weather is cooler but crap. Systems moving thru. My head doth protest.

I got to my medical massage with Lisa. Holy OUCH she needed to work my hamstrings and shoulder hard. I’m a mess. Idk what I’d do without massage monthly for 90 min. It is so painful but really helps open up my muscles. Lisa is the first medical professional to tell me she can verify and *see* the kind of pain I am in becuz of the state of my body. It is validating, however painful.

Back home now. I’m on the heating pad for my si and ice ony head for my migraine.

All done. Pathetic. My day all done.

Tired of being tired, by Tamara Haag

 Great article by Tamara Haag… I call the fatigue “Pathologic Lethargy” – having a cement body and trying to move thru quicksand.

“A few months before my rheumatoid arthritis diagnosis in 2000, my body was struck by a number of symptoms I couldn’t make heads nor tails of. Studying abroad in England, my term at Oxford started with noticeable swelling in my joints, followed by aching pains. I knew that something must be wrong, but it wasn’t until I was hit with debilitating fatigue that I sought British medical care. I was so tired that I thought I must be ill. The doctor wasn’t sure what to make of my symptoms, and he did something he said was rare for him and prescribed antibiotics. Obviously antibiotics aren’t going to help an autoimmune condition, but not knowing that was what I was contending with, I was disappointed when the medication didn’t help. I felt so weak and tired that I spent most of my last two weeks abroad in my room, and started eating tons of protein and iron, grasping at dietary straws.

Considering the extreme fatigue I experienced before my diagnosis, it seems like I should always be conscious when this RA symptom is at play. Yet, even after 15 years with the disease, there are still times when I catch myself wondering why I’m so very tired, and then eventually, while drinking yet another cup of coffee or a vitamin drink, it will dawn on me: this is RA fatigue. The pain of RA demands so much attention that I never find myself wondering why my joints hurt so much. I always know it’s my RA. Pain is like a bucket of red paint thrown on the canvas of my body, whereas fatigue is like a thick layer of dust. It’s not as immediately recognizable, but it makes the picture dull and fuzzy. While pain roars in my face, fatigue talks about me behind my back.

Yet, there are times when the fatigue is so intense that it does rise to the forefront of my consciousness. While the pain may feel like a knife, like a vise, or like fire, fatigue can have the crushing weight of a sledgehammer. Lately I’ve been in a flare, and the fatigue has been like one of those heavy aprons used during x-rays to shield radiation. The weight of it pins me to the couch or the bed, and siphons away any motivation to move. I make it through the workday with difficulty, and when I come home I feel like I have no energy left, that I am running on fumes. My young children want my attention, but rather than play with them I watch them play around me as I lie on the couch. Sometimes we color together, with me supine and using a clipboard, while the kids sit at small chairs pulled up to the coffee table. Other times I’ll read to them, but when I can’t even summon up the energy for that I resort to audiobooks. I look eagerly forward to bedtime, and once it arrives I fall asleep along with the children at 8:30pm. Even after nine hours of sleep, I wake to the sound of my alarm wishing I could stay in bed all day. When the weekend comes, there have been days where I spend the majority of the day in bed or on the couch, yet the fatigue is like a voracious beast whose appetite is never sated in spite of how much it is fed.

It can be hard to communicate this to others, as the depth and the heaviness is so much greater than what I associate with the word “tired.” “Exhausted” comes a little closer, but still doesn’t do the feeling justice. I am eagerly anticipating the end of this flare and the waning of my fatigue, when I won’t have to try to find a way to describe how it is that I’m feeling and I can again have the sense that I have a good deal of control over my life.”

Christmas Eve #ChronicallyChristmas

^ why does this image affect me so? So many many times I’ve believed completely that the world would be better off without me. So many times I’ve contemplated ending my life.

Put a Christmas Eve together.

Woke early…A little biz video…Got to nail spa. By the time I got home, the weather and midcycle hormones were murdering my brain.

Murder. Meds. Ice. Heater for back. Back to bed. Marc was amazing – getting the kitchen cleaned etc.

We were able to put appetizers together (our typical Christmas Eve dinner). We got to Lakeway Church with Courtney. Oh man, so so loud. Almost rock concert loud. Really nice service. Silent night with candlelight❤ The best.

I thought – there was a part of me that missed having my parents here. And a bigger part of me that felt guilty for enjoying not having my parents here. What does that all mean? No idea.

At home, we snacked, opened new matching PJs and stockings. Marc and I – our first year having stockings ❤

So much Owie. To bed.

Shiny Triptans

Often Chronic Migraineurs have tried many different triptan medications before finding their “favorite.” Meaning, it seems to work the best for their individual needs.

There are side effects with triptans. Myself, I get side effects ranging from anxiety, “neuro-jitteriness,” fatigue, or a “heavy feeling” in my chest and limbs.Best case scenario, they work and you feel better in 30 min. Worse case, your migraine does not respond to the expensive little med and you’re stuck with symptoms.

There are even some Migraineurs who cannot take triptans (either due to side effects, med or diagnosis contraindications, or allergy). This means the entire drug class is absent for their migraine treatment, limiting them tremendously. 😔

One of the biggest noises about triptans is the threat of Serotonin Syndrome* (extremely rare) since they work on the serotonin receptors. If you combine triptans with other serotonin receptor medications, the risk of SS increases. Triptans are also offenders of Rebound or Medication Overuse Headache. It is recommended not to exceed 3-4 triptans a week. Insurance companies are very limiting on triptans as well, allowing only a handful of the shiny little pills a month (I can get 9 rizatriptan a month, generic for Maxalt). Obviously, if Chronic Migraine is defined as 15 or more migraines a month, there is a big problem with relying completely on triptans to treat CM.

Today in Austin, TX, the weather is total crap: rainy, overcast, cedar and mold allergens. Verily, it is trying it’s best to make my head implode.
*Serotonin syndrome (SS) is a group of symptoms that may occur following use of certain serotonergic medications or drugs. The degree of symptoms can range from mild to severe. Symptoms include high body temperature, agitation, increased reflexes, tremor, sweating, dilated pupils, and diarrhea. (Wikipedia)

The Holidays

Marc and I made a Holiday Open House last night! It was fun…Great food, champagne, new people at the home of our house builder realtor, Holly.

Grit teeth, take medicine, makeup, hair, outfit. Don’t second guess. Don’t think too much. Stay in the moment. And go! Savor it.

Pushed myself hard for it and so happy we did. It’s 10:50 am the next day and I haven’t been able to get out of bed.

Happy Holidays! #ChronicallyChristmas

Stay strong.

It’s not a test.

It’s just Migraine. It’s only pain.

Pain ends; Love is Everlasting.

It tries to kill you…It never will.

Just. Stay fucking strong.

Burning in my right temple, above my right eye. Ice it and make sleep come. Sleep all night to wake for another migraine. It’s only another Migraine. Stay fucking strong.

Text from my Migraine

Is my Life recognizable? There was a time it wasn’t like this… But I can’t remember how it felt. How did it feel when my head was not glass – all the time, ready to shatter, every small change a major assault to the nervous system.

I am smaller, less significant, weird, freakish, so tired, so embarrassed.

I speak a different language than I used to. I am sad. I am alone… And still alive. 

There is this subhuman culture; we exist somewhere between shadows and death. 

Shhhh. Peace be with you. Don’t stray too close to the shadows.

Rheumy in the rain today

Dr Bunch liked her little gift: an RA awareness ribbon pin💜💙

She said my joints felt good and she was happy the Humira seemed to be helping. I can decrease my methotrexate! Hooray! All things considered, I do think my joints feel better than they did this time last year.😃

She had already received the CT chest scan results…clear and normal! Of course! So my cough is just interested in a long-term relationship with me.💜 Friends.💜

Cool and drizzly today. My head is “doing it.” But the kids come home early from school so we can cuddle and watch movies. Ken and Courtney are off to Dallas tomorrow for the LTHS state game! Woot!