Chronically Something
Chronicles of Life with Multiple Sclerosis
I want to know when my auto-immune disorder will be recognized as a super power?
Damn we need to open our own school for ourselves and others like us.
I’m still waiting to hear from the X-Men. (Hey, a nerdy girl can dream, right?)
I mean, my body destroys itself! How is that not a super power? My immune system attacks itself! What can yours do? Function properly? BORING.
I have an auto immune disease because the only thing strong enough to kick my ass is me. (Not my quote. But still awesome.)Anyway, Charles? Xavier? Which should I call you? When you get this, my dear Professor, know that I am ready and waiting to join your team.
Healthy People vs. Chronically Ill People
- Healthy People: I hate my body!
- Spoonies: My body hates me!
- Healthy People: I hate my job!
- Spoonies: I wish I could work!
- Healthy People: I stayed out too late; I'm so tired today!
- Spoonies: I washed my hair today; I'm too exhausted to do anything else!
- Healthy People: Why are you depressed?
- Spoonies: There's no "trigger" for depression; it's not just sadness. Depression happens because the chemicals in my head are screwy!
- Healthy People: Why don't you ever want to do anything?
- Spoonies: You have no idea how much I WANT to do stuff, I just CAN'T sometimes.
- Healthy People: I wish I could stay in bed all day!
- Spoonies: I wish I could get out of bed today!
- Healthy People: Want to go see that new movie at the theater?
- Spoonies: *thought process* well, there are 4 stairs to leave the house, 28 steps to the car, the car ride will probably aggravate my headache, more steps and more stairs once we get to the theater, two hours in an uncomfortable chair and $15 to watch a movie I'm probably not going to remember, anxiety from being around so many people, car ride home, getting back into the house...and I have maybe 2 spoons left today. How important is this person to me? Can I push through? Will (s)he mind if we just stay in and catch an older movie on TV?
- Healthy People: If you were more active/ate better/lost weight/etc., maybe you would feel better
- Spoonies: I'm doing everything within my power to feel better. Sometimes being active is impossible, what I eat is dependent upon what my body can digest, and weight loss is difficult when the first two are beyond my control.
- Healthy People: I just read that this new diet/supplement/medication/alternative therapy/yoga pose/etc. can help people with your condition.
- Spoonies: If there is something that has shown promise in my medical community, there are people who have tried it. I have likely tried it. I know you just want to help me feel better but you're making it seem as though there's some "magic cure" out there and I'm just not trying hard enough.
- Healthy People: What doesn't kill you makes you stronger/God won't give you more than you can handle/Positive thinking/the power of prayer/any other cliche saying
- Spoonies: Sometimes, what doesn't kill you makes you beg for death. Also, please don't quote scripture or talk to me about God and prayer if you aren't familiar with my religious beliefs. Not only might that be offensive to me but, also, this has seemed like more than I can handle for way too long.
- Healthy People: Check out the new bag I bought!
- Spoonies: *thought process* would all my meds fit in that?
- Healthy People: How does my butt look in these jeans?
- Spoonies: Oh, crap! Did I put on shoes today?
- Healthy People: Doctor, what's wrong with me?
- Spoonies: When we left last time, we were talking about this symptom I've been having. I did some research, I think it might be...... (and they're usually right!)
Top 12 Posts of 2012
Based on Google Analytics, the top 12 most visited posts of 2012:
- Painkiller Paranoia: The Stigma of Opioid Use Among Chronically Ill Patients
- Fighting the Fog From Pain With Narcotic Medication? New Study Reveals What We Already Know
- 15 Tips for Your First Visit to a New Rheumatologist
- The Human Pin Cushion: Tips for Making Self Injections Easier
- It’s My (Pity) Party and I’ll Cry if I Want To
- Doctor Disclosure: What to Do After a Terrible Experience
- Download Your Free Chronic Illness Health Information Sheet!
- Chronic Illness & Dwindling Friendships: Finding a Balance and How to Handle Negative or Changing Relationships
- College and Chronic Illness: 19 Tips to Study Strong & Fight the Brain Fog
- The Arthritis Name Game: Five Reasons to Stop Using the “A” Word
- Love Yourself More Chronic Illness Challenge
- Hope: The Thing With Feathers
A huge thank you to the new and old readers here on Chronic Curve for your kind words, your comments your likes and reblogs, your shares, and your interest. As of today, there are just under 20k of you subscribed to Chronic Curve and it just blows my mind and humbles me each time I see more people reading these posts, learning about these diseases, learning about our lives as chronically ill patients.
What a gift that is. Cannot wait to see what 2013 has in store for us all.
As always, thank you for reading.
Love & spoons,
Emily
*You can find the artist of this lovely painting here.
To all my MS, Fibro, Lupus, RA, Pancreatitis, and chronic pain friends. Please try your best to have a wonderful Christmas. I know this time of year is exceptionally hard as we are pushing ourselves and trying to appear normal around friends and family. Trying not to show our pain so we won’t make them feel “uncomfortable”. But tonight, I received a huge reality check as to what my body can and cannot do.
My face feels like acid has been poured on it. The muscle in my left arm is protruding and so tight and exceptionally painful. My leg muscles are so tight that walking hurts like heck and when staying still it still hurts like heck. Headache escalating quickly.
Doing my best to not let it steal my holiday spirit. It’s easy to say but hard to ensure that is doesn’t.
Tomorrow I add a new name to my list of ‘specialists’
and find out for sure if I can add a new name to my list of auto immune disorders. Have a bad history with Rheumatologists’ miss diagnosing me with lupus, blowing me off, telling me things are all in my head or maybe I’m just fat. So I’m anxious about it. My neuro told me he trusts this guy and I like my neuro so fingers crossed. He’s pretty certain thats whats adding to my pain but he’s not a rheumatologist.
Been too tired to post much more than a line or two response to things. but this is the second new specialist after the Sleep specialist I started seeing in the last month or so. I’ll have to post more about that but what she told me was ‘hey, so you barely have sleep apnea and I think your first Neurologist was use a jerk and didn’t think you had symptoms of MS (other than blindness hah) and sent you to do sleep studies to ignore you.” That, oddly, was not shocking at all. Its why I left old neuro for my current neuro who is at an MS clinic. Specialists are important whit this sorta thing. #lifelesson heh. If only I had been strong enough to leave sooner.
The neuro change ended up ok for the most part and the sleep specialist seems really good and knowledgable about MS (understanding co-existing issues holy shitballs! ). Have a GP I like.. I’m wondering if I’m getting too lucky on the doctor front..
Ignoring that potential luck issue, Here’s hoping tomorrow goes in the same sort of direction. Mostly any direction that doesn’t stress me so much I can’t drive myself home from the depths of downtown boston medical area at what will be close to rush hour. heh.
/babbling
IF ONE MORE PERSON SAYS THIS!!!!!!!!!!!
I know RA is genetic, but in my case, I am the first one in my immediate family to have it (neither parent, no grandparents, no aunts/uncles)
So stop asking “Oh who else in your family has it?” Because my answer is nobody.
Sometimes people around you just need to shut up.. and thats the best thing they can do for you. *hugs*
owly asked: Can you link to the source / study that states there are more RA-related deaths than there are Lupus-related?
Absolutely. This post from RA Warrior details the comparison, and these two sources from the Center for Disease Control are how the fact was derived. To sum it up for you from the ‘97 CDC mortality reports, RA accounted for 22% of all deaths due to arthritis and other rheumatic conditions, Lupus accounted for 14.5%. As of 2006, mortality rates for Lupus has decreased, so that’s always good news! Unfortunately as of 2007, the RA mortality gap was still widening, however there was a decrease in mortality rates among pediatric RA sufferers.
- Me: Prednisone, why are you ruining my life?
- Prednisone: I'd never do that, I'm here to help. Check out your joints!
- Me: Ummmm, they are all red and puffy and stiff, AND they hurt like hell!!!
- Prednisone: I do my job, what are you trying to say? How'd I ruin your life? I want examples!
- Me: Well, I'm a raging bitch, I gained an amount of weight I can't say out loud without crying, but let's just say you can't tell the difference between me and a woman that is in the beginning of her second trimester of pregnancy, I can't stop eating, my blood sugar is all over the damn place, I have acne, my vision is all strange, AND my head hurts!!!
- Prednisone: Wasn't me.
The “Difficult” Patient: It’s Time to Replace the D-Word
I wish every doctor could read this. Thank you for this post.
I hear the phrase a lot from doctors, physician bloggers, surgeons, nurses, fellow patients and loved ones; being labeled the “difficult patient” because of a chronic or complicated illness.
I’ve heard “the difficult patient” referred to as a lot of things: the patient with a nasty attitude; the patient who refuses treatment or refuses to take care of their body; the patient with a complicated family situation; the patient with a terminal/complicated disease pattern; the patient whose disease remains a mystery; the patient who can’t give a straight answer; the patient who has a chronic illness.
Most of those definitions I understand. But it’s the phrase I have an issue with when it comes to being the chronically ill patient.
About Me
Thoughts, ramblings, and unsolicited advice about life with Multiple Sclerosis / Chronic Illness, by me and other people on the internet.
Because sometimes it feels good to be able to say "oh man I can relate".
My background. Brief history of how the shit hit the fan, when the shit hit the fan. Written then from that POV. Lets call this link some context to this blog
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