“Appreciate what people do well, and celebrate who they are, assuming that they do what they do well. After all, it is what it is.” – Christopher Peterson
We seem to have no problem accepting and appreciating on faith most of what people tell us about themselves to be true but when it comes to living with an invisible illness the doubters come out of the woodwork. Can we really blame them? Hang on before you get upset with me, please read on a bit.
“There is nothing more dreadful than the habit of doubt. Doubt separates people. It is a poison that disintegrates friendships and breaks up pleasant relations. It is a thorn that irritates and hurts; it is a sword that kills.” – Buddha
I started thinking of this concept of discussing our health struggles in terms of them being invisible and why it is so upsetting to us that people don’t immediately take our word for what we are telling them regarding our health or need for accommodation but also that we get so upset with strangers when they choose to doubt us. I will work to tell the world about this disease but I won’t hold it against people who don’t have the understanding… yet.
In the mean time I will accept where I can and enlighten when I can because -
It Is What It Is. By it’s nature – invisible.
There is a beautiful image above if you could just believe me and take my word for it. It is invisible – do you believe me?
I have some difficulty with the concept of insisting others understand what my life and what my difficulties are about. I insist that doctors believe me. I insist my friends and family believe me and I want a level of empathy for my struggles from them, the people who matter. I want us to have empathy for all people and all struggles but I also really want to live my life in the flow of society as best I can. Is that so wrong? I am going to find a blessing in AS being invisible while it is because one day it might not be. I will walk through my life as me first, disease as distant from who I am as possible. I will take the good that comes from it and continue to push back at the bad. Lesson the anger in every breath. Stop fighting and wasting energy on what I cannot change.
We talk about our invisible illness and how we expect people to understand that we are struggling even if they think we look fine. I think we are asking too much of strangers. I honestly don’t give a darn if a stranger doesn’t believe me when I say I need a wheelchair for the airport or help to get my groceries into the car. I will state in clear terms that I need an accommodation and I will not hold their ignorance or skepticism against them. They are a fleeting encounter and I will not let them bother me or cause me inner turmoil. And if a person wants to share their advice for how I can be cured or healed. I will listen and not take it as a personal attack. It is what it is.
It has taken time but I no longer allow others to doubt me. I have a disease you cannot see from the outside. No amount of energy I spend trying to convince a doubter or skeptic will add to energy I have for ME to live my best life possible. I covet energy. I could expend it on convincing people who won’t change their mind until it happens to them or I can use that energy for things others take for granted. I will NO LONGER use up a spoon trying to persuade another about what a life with an invisible disease is like. It is what it is.
I understand the need to do this for a bit while you yourself grasp how your life has changed but I urge you to move on from that point and focus your time, your beauty, and your life on all of the good things.
I don’t discuss this to upset anyone or tell anyone my way is better than their way. We all do what works for us and do the best we can. I discuss this so that we might take a moment to stop and think about what we are asking of strangers. They cannot see the pain we deal with. When we are upbeat and positive we are still keeping our struggle inside. We don’t want to continually share it with friends and family. We hold our pain and struggle just as people with emotional or an abusive pasts hold theirs. We hold it inside to not only protect ourselves from people who won’t take the time to understand us but we hold it inside when it is convenient for us too – like speaking with a stranger at an art opening or meeting a new neighbor.
We CAN have it both ways.
I am happy to not have my disease or disability the first thing someone notices about me – I am fortunate it is invisible because that means when others first encounter me they do so without a preconceived notion.. For those where it is visible I commend them – their struggle will always be bigger – they don’t have the luxury of the choice of when to hide it. I am lucky enough to meet the world this way and if it means I have to explain myself in a situation where I need a little help and it is met with skepticism then that is a small price I will pay.
I don’t want to be upset at people because they can’t see what is happening inside my body with my immune system. I want to be glad that I have the choice to disclose when I want, how I want, and if I want. If my disability were visable I wouldn’t have that choice. I’d like you to join me in celebrating our invisible illness!
It is what it is and I’m ok with that.
Hope everyone has a Happy LOVE Day!
There is so much going on with me – I hope to catch you all up very soon, until then – sending BIG love your way!
“Know what’s weird? Day by day, nothing seems to change, but pretty soon…everything’s different.”
–Calvin from Calvin and Hobbes
Do you ever think you are trying to make the different pieces of your life fit together when it shouldn’t require so much effort? That is how I’ve been feeling as I’ve tried to put all of the pieces of me in one place called “The Feeding Edge”. It has always felt a little forced and a lot confusing I’m sure to new people who find my blog and think it is going to be all about health advocacy & ankylosing spondylitis. So…
I’m going to let The Feeding Edge be what it was designed to be. A blog about things related to health & living the best life possible with a difficult & painful disease.
Don’t worry, My art will always be a part of what I share here but I desperately need a space where I can just explore the me that isn’t about “the apple lady” or spondylitis. I know that this is a good and healthy decision but it is hard to come to grips with it for some reason. For the years I was seeking answers, looking for others who understood, and exploring ways to discuss difficult things, having A.S. right out there was very important to me. I am not ashamed. I do not want to hide this part of me. I just want a place to explore and grow in new ways. I have finally come to the conclusion that I can’t do both of those things here. For me to spread my wings in ways I’m always encouraging others to do – I have to go and do that!
What have you been holding back from exploring in your life? I know taking steps to do something new feels scary but it is also liberating and exhilarating!
I’ll share some news of my new endeavors here when it seems it is the time but for now I’ll be posting here on topics that deal with health advocacy. Like some new apples, the apples for a cure project, and our second year of Walk Your A.S. Off! All projects that are deeply important to me and will continue to grow and develop. Please make sure you have signed up to get my posts via Feedburner emails (info below) because I won’t be sending out too many newsletters but I will be posting more about a variety of things I know you’ll find interesting.
Here’s to the new year & new directions!!!
All my love,
Please make sure you have signed up to get my posts via Feedburner
I decided that for Christmas I wanted to make things for people. Hand made feels good to the maker and most always wonderful to the receiver. We all have so much so what do you give? So for Christmas I wanted to create a doll or two for my niece Parker and nephew Beckett who are 6 and 3.
Where that endeavor has taken me has me completely shocked and amazed and oh so amazingly happy.
I want to make dolls!!!
Wow – who knew! Certainly I didn’t know this but I have been happier these last two weeks than I’ve been in a very long time. Creativity comes out of people in the most unexpected of places. Thankfully at 43 I am able to embrace the thought of being a doll maker where at 20 that would have seemed oh so uncool. It may be uncool now for all I know but I so don’t care! lol
If this is where my love of creating takes me than I’m ready to fully embrace it and love every moment of it.
Have you ever been surprised at a turn in your life? Did it feel kinda scary or maybe like you were insane to contemplate making such an epic and drastic shift? That is where I am right now… and guess what? I’m going to let this roll and see what happens!
Above are the five folk art dolls I made over the past two weeks. Aren’t they awesome! I’m in love with them, that is for sure. I’m in love to the point that the idea of the next one is keeping me up at night. Maybe, just maybe life can be simple. Get inspired, create, sell. That is sounding blissful to me actually.
So I’ve had a HUGE response to these guys so I’m offering up a couple on my over halled Etsy shop. These are made to order so Cinnamon (shown below) was already sent to her forever home but I want to make one of her for you. You see – each one has the person’s name on it so that is why when you order – your doll will look almost like Cinnamon but there will be slight variations since these are made by hand – that is where the magic happens. And – if you love her but want her to be mostly purples – I CAN DO THAT!!!!
Cinnamon will have that amazing hair – that makes her Cinnamon. Other than that we can change her colors out.
To order her please check her out on my Etsy shop and make sure I have your email so that we can make her just so.
Peace, love, and precious things that make you feel good!
Do you know Jennifer?
She is an AS Warrior and a friend. I love her writing and her blog - Live Art.fully. I met Jenn at the beginning of starting my blog a couple of years ago now. We became friends online and then we were lucky enough to have met this last summer when my mom & I traveled to Oregon for a few days. Jenn and I share a love of art and artful living. We also share AS.
Yesterday Jenn posted some BIG news that has me so very very happy. I wish for everyone what she is experiencing now and I am afraid for her too. A glimpse of our “old selves” as we come out of the crisis years is both thrilling and terrifying. We can’t believe we are starting to feel better and we wonder if it could actually be real. After 6 years of feeling better, I still worry it will all slip away. This is why I say I’m afraid for her – it is worry that I can’t stop for any of us until a day comes when no one has to deal with Ankylosing Spondylitis or any disease. She writes about this transformation so beautifully.
Please take a moment to read her latest post. And if you have a moment, leave her a comment to help her celebrate and hope and connect.
Peace, love, and health!
As many of you know I’ve been working on changing my eating patterns.
What does that mean? Well, getting back on my mostly gluten free habits is a start. I was “mostly” gluten free – let’s be honest – to be completely gluten free is almost impossible and for someone like me who is sensitive but not celiac it is a very good habit to be in to avoid wheat based bread and pasta as a start.
In the last year I fell horribly and miserably off of avoiding gluten. And in turn, I paid for it. My energy went down, my pain levels went up. I knew I had to get back into the habit of better eating and I wanted to take my these habits (notice I’m not saying diet) to the next level. At about that time, my younger brother Jason, and his wife Amy, who is a registered dietitian, said they were going to change what they were eating as well. Voilà - incentive and camaraderie… and a healthy dose of misery for me, but as the saying goes at least I’d have company. I also wanted to figure out how to make this less miserable – life is too short for that!
I started on November 4th with the caveat that I’d go 60 days to see what happened and… that Thanksgiving Day was off the table. I wasn’t eating tofurky and vegan pumpkin pie. A girl has to have priorities!
But, some interesting things have happened in my first 30 days. Here are a few of my observations!
1. Cutting out gluten for the second time in three years was much easier than the first time. I’ve already experimented on the different brands, become used to the little tinsy pieces of commercially available GF bread, and I have become comfortable with Pamela’s GF baking mix. All good things for a smooth transition the second time around.
2. I realized that I don’t really adore labels on eating based on categories. This seems too final, too committed for me. I am not a vegetarian but will more often eat meals without meat. Eating fish, especially those with higher amounts of Omega 3′s – like salmon and trout is always a better option than beef. I am not vegan; I have vegan tendencies – there is a difference. A cookie made with GF flour or Almond meal, no butter, and sweetened without refined sugars but using an egg – is a grand and lovely cookie! Much better for you than the ones I grew up making and still adore – the Toll House recipe! So for heaven’s sake put an egg in there and get MOST of the way there!
3. I don’t cut meat out of my diet because I’m an animal lover, although I do love animals and think the way we produce meat is often times horrific. I philosophically see eating meat in an ecological food chain manner of prey vs. predator. Seriously. Natural apex predators are the only conventional meat food source that I won’t touch – I know, I’m weird. For more on this concept – click here. Thankfully I have no interest in eating the Honey Badger – and the Honey Badger, well he doesn’t give a sh*t! (oh, how I had to say that) and I will do all that I can to eat ethically raised and farmed food as well as non GMO and organic but I won’t make an extra spoon spending stop if I can’t get what I need – I will buy what is available. When I eat beef I want to try to eat grass fed beef for example. I think the idea of “eating further down the food chain” is a great idea. We can survive and even thrive on less meat but to cut these items out all together is simply not practical or appealing to most people.
4. If you are vegetarian or vegan I applaud you – it takes one heck of an effort. And a RAW vegan – oh my God you are truly amazing! Like Andrea of Betty Rawker who has helped me see that I can still make goodies like Raw Brownies or these Hazelnut Truffles! I really never need to eat a “regular” brownie again. Maybe someday I will go that hard core but the concept of doing anything hard core awakens the rebel in me frantically working to not join any. group. ever. I’m a really bad joiner and tend to keep it to a minimum with things like membership to the SAA or AAA and I will admit that if you parse my words, yes, my coffee club punch card means I’m a sell out. But! When we take the label away from how we eat, I think the idea of simply cutting back becomes a way more people can prosper from healthy eating patterns. For me it is easier to see this as a long term strategy if I don’t have to beat myself up for eating a snickers bar on occasion. My friend Ria who blogs at Cigarettes & Melted Chocolate has a wonderful sane approach that I agree with as well. Do your best and if you do eat that donut, forgive yourself immediately and get back on the healthy eating wagon – don’t allow one slip of the mouth cause you to have the next goodie and the next, well, until the next time you do. My food mantra, “Do your best”!
3. Because of the above, I am not becoming a vegetarian or a vegan. I am simply me, eating mostly foods that help me be healthier which again, for me, is a focus on foods that don’t contribute to inflammation in my body. Some of the foods you can classify as acting against inflammation so that is where we talk about this being an anti-inflammatory eating approach.
4. So the items on the mostly not to eat list are as follows:
Meat except fish/shellfish but only once or twice a week.
Dairy – except for an occasional egg.
All Soda and any beverage with sugar in it.
Refined sugar – replacing it in as many places as possible with applesauce, bananas, agave, honey, or stevia for example.
5. Check out Dr. Andrew Weil’s Anti-Inflammatory Food Pyramid – it is a great resource and I’ve seared it into my mind but keep a printout of it in my car for food shopping trips to keep me in check! Remember to check with your doctor first as with starting any new approach to eating or dieting. I drew my own above cuz it was fun and I like to use my own images :)
6. I am taking supplements. I compiled a list a few years back that works for me. I’ll try to share that list at some point if anyone is interested.
7. Now you are wondering how it is going after 30 days and I think it is going well. At my Remicade infusion my weigh in had me down 12 pounds! I’m finding a groove and getting to a comfort level with it. Doug is mostly eating what I eat at dinner so I don’t have to cook two of the big meal of the day. I made some spaghetti with GF pasta and on his I added some meatballs and cheese while I went without. I look for those types of recipes. I’m definitely feeling more energy and I definitely did not feel well after my Thanksgiving binge but Thanksgiving does that in general. I think my skin looks better so that is a plus and I’m happy about this so that is another plus. I do feel the need to make all the Christmas goodies I make for my family because that kind of baking is a creative process for me on top of loving to give boxes of handmade yummies to my family so I will not take that away from me and I ask you for your encouragement and strength to get through that with little to no slip ups! I’ll let ya know…
So, this is how I will work to eat in a way that is beneficial to me both physically and mentally. I balanced approach IMO!
I’m posting pictures on my Instagram account and on my profile on Facebook – please send me a friend request or subscribe to my public posts if you’d like and you can follow along there on a more daily basis than here on my blog.
I have to say that the most interesting thing about the last 30 days is that you all are interested in a cookbook! It’s a great idea and I’m already on it. I see it as a combo of my story of living with AS and doing advocacy work, my art, this eating approach and recipes! But I’d really like a lot of the recipes to come from you so send my your favorite recipes and I’ll attempt to give them an Anti-Inflammatory makeover and if I find a publisher – put some in the book – with your permission of course!
Peace, love, and food – glorious healthy food!
Peace, love, & CURES!
I recently started a Facebook page that is called, “I am AS Positive”. It was something I had been considering for some time but was a little tentative about because there are times when being told to “remain positive” is like having someone poke a rusty nail into your eyeball, pull it out, stomp on it, and… well you get the point – worse than nails on a chalkboard. So I asked some other AS bloggers and advocates their opinion because they connect so closely with the community and are very positive people themselves. Their collective answer was a resounding yes, and we all set up the page together and a group of us are co-admins on it.
We take a pledge to remain positive – a pledge – because it can take that much to not go into all the things that are so horrible – to go negative. We all agree that there is a difference between sharing difficulties and venting and being someone who suffers beyond where you need to suffer; that place is self-pity mixed with martyr sprinkled with one-upmanship. It isn’t pretty and it is tiring for the people who you need to be your support system. For so many of us that is a place we will not go and if we do – we won’t splash it all over other peoples’ lives and on the internet – those moments happen with our close circles in private moments. There is a way to talk about our lives to raise awareness but when it becomes what I’ve described above – it helps no one.
Today I was about to share a graphic about never giving up and I started thinking that I needed to talk about why sharing positive quotes and stories is so important – and how sometimes the cheerleading from the proverbial Facebook peanut gallery is just flat out not what you want to hear. Sometimes we have to go to a dark place – and sometimes we have no choice in it – we’re there no matter how many affirmations or mantras we shout to the rooftops. There are some topics about living with a disease like AS that can be unbelievably difficult to verbalize and share and even more difficult to live with. They need to be discussed but they don’t need to be used as a way to convince the world that we have it bad.
Saying “never give up” can be difficult to hear when the things you are battling are pain and illness. We say these “positive” things to remind one another that sometimes life is ok – it doesn’t negate the times that it is horrendous. For some – especially people who are newly diagnosed or for people who have friends and family who refuse to understand the disease you have – there is a worry that if we show you our ok times – that you will think we must be fine and it couldn’t be THAT bad. Guess what – we are damn sure going to take hold of a moment of joy and happiness – because those moments are like air – they keep us going. No one should dare deny anyone a happy moment and judge what it is we endure because we “look fine” or were able to do x, y, or z on a given day. We work to keep positive because it helps us manage & grasp hold… and sometimes saying positive things is how we get to the place where we can actually thrive for more and more moments of our lives. Pain & depression are just a couple of the “things” you can’t understand if you don’t live with chronic pain that seems never ending. “Things” can get beyond horrible to the point of desperation – living by fiercely hanging on minute by minute – and sometimes even a minute more of hanging on feels impossible – feels never ending. Getting through those moments are where our battles are most fiercely waged – within our minds that can’t see how to endure for one more second.
We share bits of this difficulty with others in hopes of at least getting some understanding that dang it – life is difficult for us! But, what we really want and need is empathy and acknowledgement. If you know someone with AS or any kind of chronic pain or illness – if you are paying attention, you can see when they aren’t doing well. For some they show anger and lash out at something, for others it is self deprecation and for some it is withdrawing or turning inward, quiet. We cannot find words that will make you understand – most days you choose to dismiss us even if we could explain how bad it is – why is that? Are you afraid it could happen to you or are you convinced that it never would?
Please take a moment to hear this – just one little moment… guess what is the easiest thing you can do for us that will mean so much. Simply say you are sorry that we are dealing with so much and take 5 minutes out of your day to listen. At that moment please – do not compare what we are going through with someone else. We know there are people dealing with things worse. At the times we are in despair we just need a moment of empathy, love, and acknowledgement.
That is it.
That is what will help.
If you have AS and are having one of these times and cannot find someone who will do this for you – remember - we have a big wonderful community of people who understand and will be there to listen and get you through these horribly bad moments. Reach out when you get to this place – please.
For anyone reading this who knows someone or loves someone with a chronic and painful disease. Thank you from the bottom of my heart for taking a moment to hear me out. I have hope that you will see our positivity as our badge of courage instead of proof of the fact that it can’t be that bad.
I am A.S. Positive!
A is for Armadillo Cowboy!
The November coloring page will be emailed out tomorrow! If you aren’t signed up you won’t receive it. I’m making these Free coloring pages available only by email!
To sign up – Click HERE!
I’m also working on an armadillo illustration in pen & ink and watercolor to sell. It is very different than this guy but I think you’ll love him. There is something wonderful about carrying around your home and your protection on your back.
Peace, love, and color!
I just did a rough calculation of how many apples have been created to date:
365 original apples for the year long Art Apple A Day project.
100 original apples for the Apple A Thon fundraiser for the Spondylitis Association of America
500 – Approximately – Guest Apples made by all of you! (I’m going to get a better count)
+/- 100 Hope & Apples made by the Spondylitis Community!!!
31 original apples for the launch of Apples For A Cure.
1 Apple for the 2010 Holiday Card for the Spondylitis Association of America.
1 NASS Apple made for Gillian Eames!
1 Apple Sponsored by The Positive Pear
1 Apple Sponsored by BJC Health
And a few miscellaneous apples here and there!
That is a LOT of apples created !!!!!
Congratulations to everyone who has helped make this awareness project so successful! Here’s to 100o more!
We’d love to add your apple to our Guest Apples Page!
Love, light, peace, and health,