PillPack looks like a godsend for anyone with consistent medications who are sick of filling their pillpot every week (probably less so for folks whose meds are in flux due to treatment trials); anecdotally, it seems that some regular pharmacies provide a similar service, so definitely check with yours!
When you mention your chronic fatigue and the person you’re talking to responds with,"Oh! I’m tired all the time too!"
One of the hardest things about chronic illness is the waiting. Waiting for the medication to kick in. Waiting for the prescriptions to be filled. Waiting for paperwork to clear. Waiting for the next doctor’s appointment. Waiting to please just get better already or to finally keel over dead.
Over the years I’ve gotten used to the pain, but the waiting never gets easier." -(via the-girl-with-the-purple-cane)
Okay, that was fast. I was perfectly healthy on Tuesday morning (or at least, as healthy as a person with lupus can be) and then suddenly, BAM, I came down with something. I still don’t quite know what it is, but I do know that I feel like shit. I’m almost positive I had a fever yesterday, but I don’t have a thermometer in the dorm. I had chills and some soreness that is probably mostly from the intense exercise that I had done earlier in the day and the previous day. Today I woke up feeling worse than yesterday. The muscle soreness was unbearable. I could barely walk, much less make it up the stairs without wincing. My calves are still crying, as well as my upper back and abdomen. I’ve taken all the naproxen I can, but it really doesn’t feel like it’s doing anything. Hopefully it gets better soon! I can’t afford to get behind in my classes!
Putting Lupus in Permanent Remission
Exciting news! Northwestern Medicine Scientists have successfully tested a nontoxic therapy that suppresses Lupus in blood samples of people with the autoimmune disease.
"The peptides have the potential to work like a vaccine in the human body, to boost the regulatory immune system of those with Lupus, fight autoimmune antibodies and keep the disease in remission,” said Syamal Datta, M.D., senior author of the study.
Like you see people being able to go out anytime they want and take showers whenever they want and you’re just like “How dare you feel okay in my presence.” and just thinking about it makes you so mad because you know there’s a big chance you’ll never ever get to enjoy a normal healthy life. Like I’m torn between “Okay I got this” and “Woe is me”. More like I feel both of that at the same time? Like I’m probably the only person who feels like this okay.
"Chronic pain is one of the most underestimated healthcare problems in the world today. We believe chronic pain is a disease in it’s own right."-Professor Harald Breivik - WHO (via thefaultinourspoons)
Holy god! Do you know how much easier an IV start would be?! This is VeinViewer and it projects an image of the veins that are underneath the skin. Genius idea!
this would make a lot of spoonies lives easier too I’m sure!
So apparently I’m wildly uneducated about methotrexate. I can’t go back on it because it’s chemo. My rheumy says that he doesn’t think that the fatigue is from the lupus since my labs were completely normal a month ago. My father picked me up from school yesterday and drove me all the way back home to get some more labs done. They suspect it might be a virus of some sort, but the only symptom I’m displaying right now is fatigue. By the way, they took a shit ton of blood since they’re testing for everything and my arm still hurts a little bit where they poked me. This happens to be a first. I won’t get results until early next week, but hopefully they are good.
It’s back. I was doing so well that my rheumatologist took me off the methotrexate. It’s only been a month since I’ve been off of it, but now the fatigue has been hitting me hard. I haven’t really had any significant problems with the lupus lately, but today has been especially bad. I’ve been sleeping whenever I’m not in class. My mother is going to call the doctor tomorrow morning, but I think he’s going to put me back on the methotrexate. I really didn’t want to go back on it. It just feels like no one understands how hard it is for me return to it.
Fatigue vs. Being Tired: What’s the Difference? – by Ashley Boynes-Shuck | Wellness With a Side of Life, Please
I think this article is helpful! I used some of this same language in the piece I wrote on my blog to try to help my loved ones understand what I’m going through. Good luck communicating about your fatigue, and recruiting spoonie allies!
So informative and so relatable!
I think this article gives good adjectives to describe fatigue. Personally I really relate to this one:
- Wholistic exhaustion (feeling fatigued on the whole: mind, body, spirit.)
Typography project version 1
-Dedicated to my amazing spoonie community without whom I would be so incredibly lost.