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Amriella
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I try to bring awareness to chronic illness anywhere I go, so I hope you all don't mind if I spread a little here in the off topic section.

As some of you know, I suffer from multiple chronic illnesses. They've been impacting my life since I was very young (3 years old). Throughout my life, and up until recently, I was completely ignored by most doctors. My parents didn't know how to help me, so I tried to keep quiet or write off my pain as something I needed to get over. Long story short, I was diagnosed at 22 with Generalized Anxiety disorder, then at 27 with Rheumatoid Arthritis, Endometriosis, and Interstitial Cystitis and Fibromyalgia in the following years. I'm 31.

This isn't a cry for sympathy, but a shout of awareness; Chronic illness, physical and mental, can hit at any age. I know I'm not alone, either, and that many people in the world of LOTRO suffer from autoimmune/chronic illness just as I do.

When connecting with others using social media, such as Instagram, I realized that there are so many people who are in the same boat I was. They have family/friends/doctors who don't believe them, or don't support them. Many of them are alone, trying to figure out how to survive with a diagnosis that has no cure. Some have support, but feel scared and lonely in their illness.

I try to connect with illness sufferers and create for them a unique item that reminds them that they are more than an illness. It's based on "The Spoon Theory" by Christine Miserandino, a woman who lives with Lupus and created a way to explain exactly how a chronic illness sufferer deals with each day, one at a time. Here is the link, it's an eye-opening read ==> HERE

(I'm probably rambling here; I'm in a major flare up.)

What I do is this: I create what I call Crafty Spoons. "Spoonies" (what we refer to ourselves as) message me and give me their address and some info about themselves, like favorite colors, places, foods, etc. So I create unique spoons for them that describe who they are. My uncle creates the spoons out of scrap wood, and I cover them with scrapbook paper, and items like scrapbooking embellishments, stickers, paper flowers, etc. It is all based on what they like and who they are.

Things are tough around here, as I'm not able to work and working with a lawyer right now to get help. I send these for free, for people to get a piece of happy mail. Most of the time, it's hospital and doctor bills coming in the mail, so this is my way to send something happy! I'm going off of donations at the present, but they're slow coming in, and I have 10 spoon requests in the past week. So, I've created a small etsy shop to help with funding, and I wanted to share it, so that hopefully you might share it, too. And even if you don't, I'm hoping that I've brought a little awareness into your life :D

This is my gofundme, which has the best description of what I do on it, and pictures of a few Crafty Spoons I've sent out recently: HERE 

And this is my etsy shop, with little ornamental magnets: HERE

If you read all this, you're a trooper lol. I appreciate you all and everything you do, in this awesome kinship. And if you know/love someone with a chronic illness, remember to tell them that they're super strong for going through what they go through every day. It really means so much.

Amri (Ams)

 

edit: I'm sure there are typos here, but my brain fog will not allow me to find them right now! Please forgive me <3

Dstini
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That's pretty cool what you're doing, very glad to see you're making the most of it!  I will definitely take a look at the Etsy.

I am very sorry to hear of your maladies, but science is making progress, and I'm fairly positive on your long-term outllook.  It's not entirely fair to blame doctors, as for example, up until a couple of years ago, we didn't even know if Fibromyalgia even concretely existed or not.

In the US, I'm a little surprised Medicaid doesn't cover the bills, but if you win your case, Medicare should help a good bit at least.  A lot of people with chronic pain issues who aren't successful with traditional medication also have some relief with MM, but that depends on your state of course, and may not be something you're interested in trying.



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Hafwen Elfling
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I'm sorry to hear of your struggle Ams. My daughter and I love your spoons. You do a lovely job.

In the kin there are many people who suffer from chronic illnesses. You are definitely not alone.



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Amriella
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Haf, you're too kind! I'm so glad you and your daughter enjoyed looking at the spoons!

 

Dstini, I'm definitely not opposed to MM. It is, however, not legal in NC. I hope that will change sometime in the future, as the benefits are substantial.

As for doctors, I'm not going to get into the multiple accounts of crap they put me through, but I do want to mention that we're fairly certain I had JRA growing up, which accounts for much of my joint and sleep issues. The fibromyalgia didn't become a problem until I was hit by someone , who totaled my car in 2011. It is when I became unable to work regularly. But honestly, I just wanted to bring about some awareness to chronic illness, in general :-).

Maegilthalion
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Hello friends, 

Thank you for your post and references Amriella, I had never heard of the spoon thing before, but it is also part of my daily life.  I have always been a very private person on LOTRO,  with a few very close friends being the exception, most people don't know my name or much about me.  The mischievous elf in me likes that, but the real person behind the elf feels compelled to share a little after such a powerful post.

First let me say that I love my life.  I have a wonderful wife, family, a few really close friends, and I don't want for much.   The other side of that is I've suffered from some really odd symptoms my entire life, which were just diagnosed last month as Recurring Polychondritis.  The worst of this is that the disease destroys my body's cartilage from the inside, and I need both knees and both shoulders replaced at this point.  Fortunately, the disease can be slowed down by medication, which I am on now, but unfortunately the damage is done to my major joints, and I'm starting to feel problems with my wrists and ankles as well.  My left shoulder in particular is completely void of cartilage, I had it X-Rayed this morning, as I have not been able to use this arm much since Christmas.   Like Amriella, I have good days and bad days, and I have to pick my battles wisely.  I detest pain medication, but it's a necessary evil.  I prefer 'natural' meds like MM, but I have to go rogue in my state for that.  Screw 'em, it's the best thing I've found for muscle spasms in particular.  

The thing that is the least fun isn't the pain, which I can handle.  All my docs tell me I have a very high tolerance for pain, which is I guess a good thing in my case, maybe a bad thing when I tend to overdo it.  The worst thing is the fog that comes with the pain.  I'm good in the morning usually, but if I'm having a bad day, by evening I may actually feel (and maybe come across) like I've had a bit too much...  If you've ever experienced this, and I hope you never do, it's just exhausting, I fumble with words, get things wrong a lot, which is also embarrassing. 

Like many people with these type of issues,  I've discovered an outlet through LOTRO.  It may be a silly game, but there is therapeutic value in it.   There is DEFINITELY therapeutic value in the wonderful people I share this kin with, and their sense of humor.

Four years ago I discovered hunting, which was a savior for me.  It pushed me to get back the physical fitness I would need to be a good surgical candidate, made it possible for me to lead a mostly normal life, and gave me some HOPE for a change.  I know I talk about this in kinchat prolly too much, but this is what drives me to hunt.  It's never been about the kill (I actually don't like killing things), but rather about the little victory I get every time I'm able to get out into the forest and just enjoy being in the forest.  Being able to outsmart a wild turkey or other game just adds to that, even though I usually pay for my hunting trips for a day or two afterwards with achy joints.  Add to that any time I actually get game, because I make sure anything that falls to my bullet is not wasted in any way.  We eat what I get lucky enough to provide.

 

Like Amriella, I am not writing this to look for sympathy in any way, for there is nothing to feel sorry about.  As I said, I love my life.  As my health progressively gets worse for me though, I feel like more of it shows through my words and actions online.  I feel it's time to let my friends know why I'm just not right from time to time.  Now, let's hope the cortisone I got pumped into my shoulder helps, or I might be making a serious decision very soon to have the joint replaced, even though technically I am too young to have the operation.

I guess we will see.

To all my friends with issues, known or unknown, I wish you unlimited spoons.

Respectfully

 

Maeg.



Last edited by Maegilthalion on Tue Feb 16, 2016 7:35 pm; edited 1 time in total


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mary.f.laufer
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Amriella, I applaud your bravery and honesty, as well as Maeg, who thankfully has shared some of what he has gone thru with me b4, which helped me personally. 

 I was in and out of hospitals when I was a kid, I always fought and , still played sports, even though I went thru pain and other illness issues. At 35 was diagnosed with peripheral neuropathy, other things, too, I don't want to list, but I still, trudged thru..but maybe 4 yrs ago escalated terribly, but I found out I had small fiber neuropathy, nerve damage, since adolescence, answered so many things..I was deemed fully disabled, was told I could no longer drive, I can no longer do many simple things we take for granted , but I came to learn to live with it. With the Spoon Theory Amri talks about, the creator of it, has Lupus, many of them have Lupus, but we all, have chronic illness, and it helps to have others who share the same problems.

 

Reading Maegs feelings are like my own, and Lotro is the same for me, i can't raid like I used to, because of the fog, or my reactions being slower, or jolting, which can suck if I shoot off a skill at a boss, when I'm not supposed to lol

I will definitely support your etsy Amri..and thank you for sharing of yourself..

 

This kin , these people are a great group, I am one who doesn't like to take much seriously, I love to joke, there are so many with great senses of humor, and so many who give of themselves and help kinmates, with quests, or a ride, RB rocks..I wouldn't want to be in any other kin...     

                                   Love   Marys

Thorondil-Seremond
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I'm also a person with chronic illness. I became ill in February of 2012 (on Presidents' Day, while trying to complete the boss fight in the Foundry!! I kid you not), and lost the ability to work a year and half ago. I am all too familiar with the spoon concept. I've spent a lot of time researching natural and alternative treatments for EBV, chronic fatigue, fibromyalgia, anxiety and some other stuff. All too happy to share information and network with any other sufferers who want to compare notes.

Amriella
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You guys are super amazing. I've been wanting to reply, but my "brain fog" hasn't let me. As Maeg pointed out, it's one of the worst symptoms, besides the pain. I know I don't speak much on runs, because I used to speak very well, and now I stumble for words. It's embarrassing to me, and makes me really self conscious, always having to look for my words. With typing, it feels like the words come out a little easier and I can always backspace. 

Maeg, I know we haven't known each other for a very long time, but I'm so...proud (is that the word?) and humbled that you've looked at this post and decided to open up. I'll tell you, I always kept my mouth shut until a few years ago because I knew I'd lose people. And you know what? I did. I lost a lot of people who I considered good friends. It opened my eyes.

I wanted to say a huge thank you to you guys, because some of you donated to my spoon project and I've been a bit overwhelmed and majorly thankful! It means so much to me.

Hoping to see you all in game this weekend.

Ams

Amriella
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I wrote a little something on my anxiety: http://jenniperberry.tumblr.com/post/142300024247/chronically-anxious

 

It's already been said that brain fog is basically evil, but for me, it's also anxiety. I've been treated for Generalized Anxiety Disorder for a long time now, and I still have massive problems with it. My medicine helps; it keeps me from freaking out to the extent of which I used to, but it doesn't completely clear up all the panic. I have a much easier time talking about this than I used to, years ago, because nobody thought this was an actual problem back then. There was doctor after doctor who told me the dreaded, "Get over it", which never helps. It was college that made me realize there was a bigger problem, and a couple years later, I finally found a wonderful GP who helped me. 

Anyway, the point is, my anxiety keeps me from doing a lot of things I'd otherwise enjoy. I love talking to people, in person, or over chat programs, yet for some reason the phone does me in. There's nothing I can say to justify why, as is the nature of anxiety, but the phone freaks me out. Headsets freak me out. Skype is extremely hard. Facetime makes me nervous. Why? Who knows. It's gotten worse over the years, partly due to my severe sensory issues, but that's just the way it is. Sometimes it's okay, sometimes it's not.

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