spooning with spoony 2

Week 2

I’m on Week 2 of the Paleo Restart program. As of Saturday, I have lost 5lbs within the first week of returning to grain/legume-free. I cannot express how wonderful I feel…

…until I try to do more than my body will allow and the fatigue grips at my soul like a crushing wave of the Pacific pounding at the shores.

I still have an issue. I still have an issue. And I don’t know what that issue is, though I suspect it is seronegative RA (dear gods, please, not Lupus). The problem with my hands started back in 2012, when I was powerlifting. I would grip my bar to do squats and then go to release the bar and find my hands wouldn’t move. I had to mentally focus on the fingers to uncurl them from the bar. Even then, it was only enough to slide them off the bar; I spent my recovery time working on opening my hands so I could do the next set. My sister (10 years my senior) is a nurse; I talked to her about it and she suggested I see a specialist since RA runs in our family.

Car accident in April 2013…had bigger issues to contend with, like the ligament tears in my ankle that went undiagnosed (SURPRISE!) for 4-5 months (depends on if you count the Canadian chiropractor who said the words “exploded ligaments” to me when doing an adjustment and taping whilst I was visiting my [now ex-]boyfriend). After I collapsed under a 190# squat, I started using the Smith Machines because I had no idea why I collapsed (and that’s a lot of weight to collapse under…fortunately, there were some folks around who watched it happen and one of them suggested I had an ankle instability…boy, did I!). Anyway.. surgery in January 2014, off my gluten-free diet (that I’d been on for 3 years), walked about the UK for 6 weeks, then back to the states, visited family in PA, back to CA; house guests, looking at gym costs to return, BAM! Fatigue out of nowhere. I just assumed it was due to lack of sleep (this was October 2014) and carried on. Two days later, BAM! My body lit on fire and my muscles forgot how to muscle (time off GF diet: 9 months).

So, now… 1.5-ish weeks on the grains/legumes free diet and I’m back to only worrying about my hands and feet (was diagnosed with bilateral DJD in my feet…which made me sorta say, “isn’t that…y’know, indicative of RA??”), but “just osteo” in my hands (at the time, I was 36 with no history of trauma to my hands…unlike my 44-year-old-at-the-time brother who does not have osteoarthritis in his hands, despite literally crushing one of them in a sheet metal press). Currently, my right index DIP and thumb PIP have mild deformaties and a loss of range of motion, as compared to my left hand. My left index DIP and thumb PIP, however, are tender in the same spots as the deformities on my right hand. Things that make you go hmmmm….

Anyway. TL;DR: Diet fixed the things it should have fixed, but not the things it shouldn’t have and I need to remember that I’m only 60% of where I was when I was able-bodied, despite the fact I feel 110% better.


Extra Spoons Bracelets - sometimes, we all need some extra spoons.

The idea of expressing a disability, invisible illness, or other chronic condition by a measure of “spoons” has become a popular one. It allows those whose condition doesn’t show, or doesn’t outwardly seem difficult, to show others how it might feel to be in their position.

You can read more about Spoon Theory on Wikipedia: https://en.wikipedia.org/wiki/Spoon_theory

More spoons are something many of us wish we had. These Extra Spoons bracelets can’t give you that extra energy, but they can remind you that there are friends and family who would share spoons if they could and that there will always be more spoons tomorrow.

This is also a great gift for someone you love who you wish you could give those extra spoons to, as a sign that you’re always there. 

$1 from the sale of every bracelet will be donated to The Jed Foundation, because Love Is Louder. If you buy other items with your bracelet, I’ll donate $1 from each of those, too. 

Bracelets ship within 2 business days, and usually arrive in the USA and Canada within 1-2 weeks, and internationally in 2-3 weeks. 


Confession #2,385

Asked my doctor about getting a cane since I’ve had trouble getting around since I was like 14. She said “it’d be a shame for someone your age to use a cane. You’re only 20.” Thanks. That’s so very helpful of you. I can suddenly walk just fine now that you’ve reminded me of my youth.

Confession #2,406

My dad just got upset because I wanted to go to six flags with my friends. He said he didn’t want me over doing it right before my make a wish trip. I snapped for the first time I told him I was going to go because my medical issues were about to become my whole life. My doctor wants me to drive over an hour twice a week to her office for testing. I have to get a port, and be hospitalized for 5 days for treatment. I want to be a kid for just a bit longer while I can. Before I have to be an adult

Confession #2,376

A while ago, I met the fantastic guy. He is sweet, intelligent, cute, and just fun to be around. We started bonding over our shared chronic illness struggles and he becomes my best friend in the entire world. We start dating and fall in love. He is so compassionate and appropriate when I’m really under the weather. He had a rough couple of months and I was there for him every step of the way. However, recently he had surgery to remove a tumor and now he’s basically cured.

On one hand, obviously I’m thrilled that he will get better. One a deeper darker level, I’m resentful and afraid. I don’t understand why his illness gets a cure and I’ll get sicker and sicker for the rest of my life. When he talks about how excited he is about getting better, I smile and act supportive, but it feels like a knife twisting inside me. I have to watch and help him get better even though that’s something I’ll never have.

I’m also afraid that he will outgrow me. He’s going to get better and then he won’t want me. He won’t want the girl who can barely go outside. The girl who uses a wheelchair and needs accommodations everywhere. He won’t have patience and he won’t empathize like he used to because now he’s a healthy person.

The worst part is, he’s also my best friend. I can’t talk to him about any of this because he’s still healing from surgery. Plus how do you say, “I’m jealous of your treatment and I want you to stay sick with me.”

I just feel so alone. I just want my best friend help me through the jealousy of someone else getting healed while I’m still sick. I want the love of my life to be completely satisfied and blissfully happy with me. I’m afraid I wont get either. He’ll leave me for another healthy person who can do all the things he’ll be able to or I’ll leave him because watching him get better while I never will feels like a dagger between my ribs.

Confession #2,436

My best friend has trouble with insomnia off & on. Lately it’s been kicking up again & she’s been on a rant about it. Totally understand, but today she was upset over sleep deprivation & that it was going to kill her. I’ve quite literally lived in the brain fog with CFS for just shy of twenty years now. I average about 4 hours of useful sleep every night. I feel for her, but at least hers will even out eventually. I’d love to have that hope.

Confession #2,420

My brother who has always been good to me has suddenly done a complete turn around. He now believes I need “tough love” to force me to “try harder” because he believes that my illness is all in my head. It’s genetic and degenerative so I can’t actually get better no matter what I do. I can’t stop crying right now. I feel like I lost him. Like he died or something. I can’t even explain it. Just this horrible grief that I can’t even comprehend. He was the only person I could count on. Now what?

Confession #2,356

I changed schools when I was 12 due to major bullying and switched to private schooling, and then a few months later dropped out because of my health. Because of my states laws, you can’t get even start the process towards getting a drivers license (it’s a several graduated step process…) until you’re 18 unless you’re enrolled in a school. If you had any progress, it is immediately void once you drop out. I’m going to be 17 in a few months, and all of my friends have their permits or license already…. and I have nothing towards it. That really hurts, especially when I’m in occupational therapy and therapy for ~*•`INDEPENDENCE!‘•*~ The biggest jump in independence that everyone my age gets, and I’m being held from it. Plus all of the ignorant folks who are constantly saying things like “haha got your license yet? (:” and “haha some of you all (a class) will be driving soon, some of you probably already are~” while winking at me. Like… it’s a good gesture, sure. But it STINGS.

Not to mention I have to go back and finish my education and they won’t let me do that until I’m 18 either….