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A Month In

Well here I am, a full month into this losing weight while having a chronic illness thing, and I have to say that if I hadn’t been so well prepared there is no way I would still be doing this. No freaking way.  Chronic illness on its own is like living inside a hurricane. Losing weight with chronic illness is like trying to plant a garden inside that hurricane and expecting it not to get destroyed.

The first week I lost weight quickly – ten pounds to be exact. That kind of excitement can carry you for a while, but eventually you hit bumps and roadblocks and if you are not prepared for those difficulties then that waning excitement will not be enough to keep you on track. Add a flare-up or two, back to back no less, and you certainly will quit – and who could blame you? That’s a ridiculous set of circumstances. I repeat: This is not easy. So if you are reading this and feeling badly because you have tried and failed, please go back and read the previous sentence one more time and then give yourself a hug from me.

I knew if I was going to succeed I could not do any of the things I had done before – working out at my maximum ability, counting on the fact that I will be cooking amazing food for every single meal, and setting goals that are more fitting for my old self, before chronic illness entered my life. All of those things are a perfect recipe for burnout and bringing on a flare. Then I’m down for the count for nearly a month wondering why I can’t just stick to my newly created routine. What’s that thing they say about insantity… it’s doing the same thing and expecting different results… right?

It’s hard in this world full of gym promotions, diet ads, and fitspiration posts to not feel pressured to approach weight loss in this way. I have to remind myself over and over again that I am not normal, and that even if some spoonies can manage those conditions I cannot, and that is ok. I am where I am no matter where others happen to be or where I thin I should be, and to expect myself to be anywhere else is nuts. If I wanted to succeed I had to meet myself right where I am at this very moment – not able to physically do much of anything.

SO I approached things in a very different manner this time. I created my entire routine and plan around my worst days. What can I do when I feel crappy? Pretty much nothing. How can I lose weight while doing pretty much nothing? By eating about 1500 calories a day and making sure a good portion of those calories come from protein, that about half my plate is filled with veggies at most meals, by reducing sugar and processed carbs intake whenever possible, and by watching my sodium intake. It sounds fairly easy, right?

It actually is.

I thought I needed to meal prep and so I spent my very first Sunday of this weight loss adventure roasting baking  sheets upon baking sheets of veggies to keep in the fridge. I figured if I’m going to eat veggies I might as well enjoy them, and I think roasted veggies are amazing. And they were amazing. Until about Thursday of that week. By then I just couldn’t enjoy it anymore as I couldn’t stand eating the same damn thing every single day. Lesson learned. Meal prep is not for me. But being prepared is.

Instead of meal prep I simply gather super easy staples and keep them in the house at all times. Frozen veggies that can be steamed in the bag, or even fresh ones that can be steamed in the bag, are cheap and quick. I can have different veggies nearly every day if I wanted to – cauliflower, broccoli, brussel sprouts, asparagus, zucchini. Ok, zucchini doesn’t come in a steamable bag. But I purchased a spiralizer and let me tell you that those zucchini noodles are quick and delicious! I also bought a few GOOD salad dressings. By good I mean that they are made from quality oils and have all real ingredients, Aldi’s always has a few and their House Vinaigrette is my absolute favorite, for use on different bagged salads. There. Problem one solved.

From there I stocked up on frozen turkey burgers and chicken breast tenderloins that can be cooked on my Foreman grill in under 4 minutes, 100 calorie greek yogurts cups, eggs, protein powder, peanut butter, frozen precooked shrimp,  and now turkey bacon. Protein handled.

From there I just thought of meals I love and found ways to increase the protein and veggies in them. When we make spaghetti, we now use zucchini noodles instead of pasta and always add meat of some kind. Tacos are made into a taco bowl or put inside romaine lettuce leafs. I love shrimp so putting six on a plate with a pile of quickly sautéed snap peas or a pile of zucchini noodles with oil and seasoning is an amazing meal for me.

I also organized my refrigerator so that finding  and grabbing the healthy foods was easier. Due to pain I often have problems bending down and reaching way back in the fridge, so I put a big cooking sheet on my lower shelf and filled it with the things that usually get lost in the way back – yogurt and guacamole cups, rogue hardboiled eggs, hummus. I also put extra bins in the fridge for dinner leftovers that will become my lunch, and for fresh veggies. It  really helped! There were no wasted yogurt cups this month, and that has never ever happened before!

Then I began following people on Instagram who are on the same journey I am, and copying their meals. I’m so serious right now. Thank you to everyone who has come up with meal ideas for me!

I knew that any kind of exercise I was able to do on good days would only be for strength/endurance purposes and not for burning extra calories, so that took all the pressure off. I made a few different HIIT programs for myself of varying levels for the elliptical and hopped on whenever I felt like I could – sometimes even twice a day, sometimes not once in 4 days. I also found a great HIIT upper body strength routine that only takes 4 minutes. I don’t work out longer, I simply add weight to make the workout harder. This keeps me from overdoing it and bringing on a flare, and it keeps me coming back to the workout because who can honestly avoid 4 minutes?

And now for the difficulties. At first the elliptical brought on a severe amount of mid back pain. I have serious problems with my rib cage and using my arms, and the motion of the elliptical handles was enough to irritate it all. So I kept my workouts short, rested when I needed to, used my massage chair, and in under a week the issue resolved itself. I did have one big flareup since, but it was a whole body flare that also affected that area. I’m still very, very careful, though. Just because things have gone well so far doesn’t mean I can be reckless.

I aslo struggled with sodium.  I knew I needed some precooked/processed meat things in my life because I can’t always make it myself. So I had to learn how to balance a salty meal with what I ate the rest of the day. In the beginning I bought frozen grilled salmon and whatever brand it was really packed in the sodium. Now I get Gorton’s grilled salmon and no longer have that problem. Even the turkey burgers have a higher amount of salt than if I simply made them at home, but the convenience is worth it for me provided I pay attention to what else I eat that day.

Another difficulty I had was not wanting to eat while in a flare. Sometimes it’s the fatigue that gets me, and that’s where things like yogurt, smoothies, and even broth come in handy. But other times it’s nausea or a complete loss of appetite that makes me not want to eat at all. This has been an ongoing theme in my life, and I know from experience that not eating enough is just as bad as eating too much when it comes to my body. At first I thought I could just find higher calorie bars and use those as meal replacements, but the carbs and sugar were often REALLY high. Grabbing whatever I could choke down from the fridge wasn’t getting me enough calories or protein. But then just yesterday I found an amazing recipe for peanut butter protein balls and it pretty much solved my problem!

2 TBS peanut butter – it’s supposed to be “natural” so you don’t get all the extra sugar but I just use what I have.

2 TBSP honey – it’s supposed to be magical unicorn tear infused, but I just use the stuff I get from Aldi’s

A serving of protein powder – I used chocolate.

You guys. It’s like eating cookie dough. I’m going to make another batch so my son can try them. I know he will love them. These help me get my calories and protein in on days where I don’t want to eat or on days that I want something sweet.

And the very last difficulty I have had to overcome is the scale. Yes, the scale. I have lost 18 lbs in a month so you would think the scale and I would be friends, but you would be wrong. We probably would be friends if I didn’t step on it every single morning. But I do. I know I shouldn’t, but I’m terrified that I will get off course if I don’t keep a careful eye on my daily weight. But here’s the thing about your daily weight – it fluctuates. So I lost 10 pounds and went up 4. I almost quit right then and there, and that was my second week. I kept going and lost an additional 2 pounds by the end of that week bringing my total loss to 12 pounds. And then I kept stepping on that scale every morning, and the same thing kept happening over and over again. I’d lose and then go up about 4 pounds only to finally lose an additional 2 to 3 pounds at the very end of the week. And each time the scale went up I would have a mini freak out and think about quitting.

I mean I laid in bed and cried the first time, and the second and third time I just stared listlessly out my window as a single tear rolled down my cheek while some emo indie pop music magically started to play. The fourth time I stopped giving a shit because I had been through it three times already and finally understood that this is a) the way it works and b) the price you pay for getting on the scale every damn day.

However, I did do something really awesome each time I thought I was going to quit. I went back and reviewed my food diary on My Fitness Pal just to be sure I was doing things correctly. And each time I discovered that I was, and that I hadn’t done anything different than the week before, so I knew I was on track

Yet… in my mind…

“…omg I gained 4 lbs… but that happened last week..and I lost weight last week…so I should lose weight this week…but right now I’m up  4 pounds…but I was up 3 pounds last week and still lost weight by Sunday…so I should just chill the fuck out and drink some water and listen to some mus – NO. MUST FREAK OUT FIRST. Ok. Fine. AHHHHHH FREAK OUT.”

Do that three times and still succeed in the end and see if the freak out is really worth it. Now I just drink some water and listen to music until the panic passes.

And so here I am – nowhere near burnt out, many days spent in bed, on purpose exercise between 0 and 10 minutes a day, and I’m still down 18 pounds. I also survived Christmas and New Years without gaining weight – I actually LOST weight – and my 40th birthday is tomorrow and I still plan on hitting that 20 pound goal on Sunday. I’ve had two bags of cotton candy, tried sugar free strawberry licorice for the movies (it was AMAZING), fallen in love with Coke Zero, had brownie thins with whipped cream on top and actually screamed at how good they were (it was like a beautiful sugar explosion in my mouf), and had one fast food meal that I could barely even eat half of. But best of all my son has come along for the ride and loves ALL of the new ways I’m making our meals.

I wrote out each pound of the first 20 I wanted to lose, from 305 to 286, on a piece of paper and hung it on my bedroom wall. I cross each one off as I go.  I have two more to cross off before my first 20 lbs is gone, and then I will hang up a new 20 lb goal on my wall. I figure I’ll just keep doing that until I’m where I need to be.  I see what I am doing right now as totally sustainable. It’s taken me through flares and the holidays, so I think it has proven itself as an excellent plan.

I don’t think I could have designed this plan without having made all the previous mistakes, though, or without learning to value rest and working under my ability. Most importantly I don’t think I could have done this without being finally treated for my RA. My RA treatment has definitely improved my life, but that little bit of what it gives back to me pretty much all goes in to this plan with just enough left over to do extra stuff with my son. There’s no way I could have done it any sooner. No freaking way. So if you have read this and are getting down on yourself for not being able to do something similar, I need you to know that I wasn’t able to do it either because there was something more wrong with me that needed to be treated. Chronic illnesses can hide behind other chronic illnesses for quite a while. Thankfully I finally have excellent doctors that not only love crazy patients like me, but are good at treating them. It took me over 20 years to find this team! So I suppose I also could not do this without them.

If you don’t have a good team or if you know you have something else going on that just hasn’t been diagnosed yet, please remember to be kind to yourself and that even I wasn’t able to accomplish these goals without these things being taken care of. Please be kind to yourself!

PS, I also did something kind of crazy. I joined a Diet Bet. I put down $30 saying I could lose 11 lbs in one month. Crazy, right? I’m down 3 pounds since joining, so I’ve only got 8 more to go. Can’t wait to check in next month and let you know if I made it or not.

If you’d like to watch my journey as it happens, you can follow me on Instagram @Still_Smihlen.

 

(:

 

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Losing It

Hello Everyone! I know I have been a bit absent as of late, and while with fibro and RA you can expect that sort of thing I can for once say I was not absent because of a flare. Hooray!

The New Year is upon us, but I haven’t been one for resolutions since I gave them up nearly ten years ago. I’m more of a go with the inner flow type of person, which means I will never start anything on January 1st nor ever on a Monday because once an idea has settled into my brain I am overwhelmed with the urge to start immediately. And so I do.

A few weeks ago I was having quite a sorry moment for myself as my stomach had begun to stick to my thighs while sitting – even while wearing leggings. It was, for lack of a better word, gross. Now don’t think that I thought myself to be gross because that is not the case, nor do I believe any body to be gross whatever the size or shape. I am a huge advocate of body positivity and self-esteem as they both have helped me a long way with my own struggles with a very distorted image starting at a fairly young age. I’m simply describing how it made me feel. And I did not like it.

When you have chronic pain and invisible illnesses, life is very unpredictable. Flares come and go, as well as new medications and new “ologists” and “ists” to visit. Nausea makes it difficult to eat and fatigue makes it difficult to prepare food when the nausea leaves. And the pain makes moving near impossible. So moving the scale up or down in the direction you need it to go is beyond difficult; it’s pure hell.

I’ve never been one to make excuses, but i do believe in looking at the facts and reasons in order to find a better way. I’ve done the diets and the exercise routines for a week, maybe two, only to be completely derailed by a flare for nearly a month. Then I would sit there looking at all the lost progress with a broken heart. I had no interest in putting myself through all of that yet again, but I knew I needed to lose the weight somehow.

Two weeks ago I embarked on my mission to lose weight without stressing myself out by doing things at just below my actual ability for as long as it takes until it begins to feel easy. This required an actual awareness of my current abilities, something I’ve thankfully been working on for a while thanks to one amazing physical therapist. This means that I couldn’t do what everyone else was doing, nor could I do what I thought I should be able to do. No, I had to go lower and slower than anyone else because I’m me and I have exceptional issues working against me.

Realizing how little I could do, though, made me feel hopeless. I figured I’d never accomplish much this way and was about to abandon my newly hatched plan until I stumbled across FatGirlFedUp (https://www.facebook.com/Fatgirlfedup).  Lexi started 2016 at 485 lbs and was down nearly 200lbs by the beginning of 2017. That’s one year’s time! I knew that I had significantly less weight to lose than she ever did, so if she could do it than so could I. Her daily posts and pictures have kept me motivated every single day – especially when I wanted to give up. More on those moments later.

I’ve accomplished a lot over these past two weeks. I’m down just over 11lbs (absolutely not water weight at all) and 3 inches off my waist. My stomach is still very clearly large, but it is no longer sticking to my thighs when I sit, and that is just amazing.

So what am I doing?

  • I own an elliptical thanks to my sister, and thanks to my physical therapist I know how to use it without hurting or exhausting myself: One minute forward, one minute backward, one minute rest. However, I had been out of PT for so long I couldn’t even go a full minute at a time so I created a HIIT/Tabata (high intensity interval training) workout for myself (using “Tabata Timer” android app: 23 seconds work, 11 seconds rest, repeated 8 times, alternating forward and backward, for a grand total of 3 minutes of work in about 4 min 30 sec time. I wanted to start at 5 minutes but I knew that was dumb and way too ambitions, aka a perfect recipe for failure. So I set myself up to succeed and aimed for just 3 minutes twice a day, but at the very least once a day. At the end of the first week I was able to increase my intervals to 30 seconds of work and 20 seconds of rest. Two days ago I was able to bump the work intervals up to 45 seconds. So yes, you can start small and still succeed. (blog post about what happened to my body and pain when I started this coming soon)
  • I have tried nearly every calorie counting app out there, and I keep coming back to MyFitnessPal because I can literally scan anything and they have it in their database – which makes keeping track of my protein/fat/carbs super easy. It is a free app, though they do have advanced features for a fee…but I haven’t needed those features yet. MFP also has the most accurate daily calories calculation, which is why I believe I am succeeding this time. It really, truly calculates for people who live very sedentary lives. This means I do not need to kill myself with exercise to lose the weight provided I stay under my calorie limit – meaning I will still succeed even on flare days.
  • The second week I added in strength training. I can only do about 4 minutes worth of work (once again another high intensity interval training – HIIT/Tabata – HERE ). I aim to do it once a day using soft weighted balls (heh heh heh). And just a quick word about high intensity – you are supposed to go balls to the wall each time (I’m going to die of laughter) but I do not do that and I don’t know when or if I ever will. It’s just not right for me right now, so I go just under what I am actually capable of.
  • The second week I also added in a fitness tracker, thanks to my brother in law. This helps me know what I’m really doing all day and therefore plan accordingly for meals. It syncs with MFP so I don’t really need to do anything other than wear the dang thing. Bonus is that it will guide me through a short session of squats and other activities, and tells me when I’ve been sitting on my butt for too long. I have the Samsung fit pro 2, and since it was free I cannot complain about the price. But they are normally around $150, similar to certain models of FitBits and other brand names. However, there is an array of generic trackers on Amazon for around $30. And, you never know who might be getting rid of one (like my brother in law), so it doesn’t hurt to ask around!
  • I refuse to drink a gallon of water a day. Nope. Not gone do it. Once you start this and you lose all this water weight, you have to keep doing it all the time to keep the dang water weight off and honestly I’d just rather retain the damn 6lbs rather than constantly chasing it. Lazy? Yes. Do I care? No. If I lose 20lbs and it only shows as 14lbs lost, oh well. As long as I am moving down the scale I don’t care. To make up for this refusal to join the insanity, I have splurged on various flavors of sparkling water, something I already enjoy (you may not like if you are switching straight from soda or other sugary drinks, but honestly I love it)and it helps me get at least 8 glasses in a day when paired with one full water bottle of actual…water. Bleh. *shivers*
  • What do I eat? I basically watched what FatGirlFedUp bought and cooked with her husband and copied that. So lots of eggs, turkey burgers, salmon, chicken cooked in various ways, tons of veggies like spinach, mushrooms, peppers and… zucchini. I bought a spiralizer and make “noodles” out of zucchini like they are going out of style, and my son freaking hates squash but loves “zoodles” – go figure! They are amazing, and the spiralizer is the best $25 I’ve ever spent. I track every single little thing that I put in my mouth so that I know what the heck I’m doing. I’ve cut down on grains, but not completely, and have really ramped up my protein. Fat has been way up and way down as I navigate learning what works best for me. For example, guacamole is an excellent source of fat and so is avocado oil, but I save calories by eating fat free greek yogurt and low fat cheese. Why? Because it works well for me this way. So far. And while I cut out all processed foods, I quickly realized I could not feasibly cook every single thing without exhausting myself (I’m the only adult in this house) so I settled on the few things I would get premade – like turkey burgers, veggie tots (thanks, Lexi), beef jerky, and a few other things. But…the trade off is SODIUM. Processed foods are higher in sodium, and that can cause you to retain water, and it did do exactly that to me… but I survived without drinking a cotdamn gallon of water. Barely.
  • There came a point near the end of my first week that the scale stopped moving downward and took a turn upward. I was devastated! I gained three pounds nearly over night. Normally this is where I would have quit in the past, so I chilled the eff out and told myself to just keep doing what I was doing and that if it went up any higher than 5lbs I would make an appointment with a nutritionist. I also reminded myself that this is the price you pay for weighing yourself EVERY DAY. And so I went up 3lbs, stayed up for days into the next week, dropped back down to where I was before I went up, and ended the week a full 1.8lbs lighter. So.. it all worked out. But I would have quit if not for seeing Lexi’s full body pics and stories on my Instagram feed every day and if not for the fact that I have already quit before…so I wanted to know what would happen if I kept going.
  • I have a treat if I want one. I had delicious bread pudding made with French vanilla cream brioche bread that I made for the kiddos earlier this week. Two servings! But I made sure to really increase my protein and veggies that day, and I made sure to do my elliptical and a few little extra exercises that really didn’t amount to more than 34 freaking calories burned LMAO, but at least I tried! I had a candy cane last night, and it was DELICIOUS. And my savior of sweet has been Coke Zero. It tastes just like regular coke to me. I also put whipped cream from the can in my coffeesometimes for a little decadence (it’s like 15 calories) and then use sugar free creamer along with a tbs of heavy whipping cream. My coffee is amazing every single morning. Mmmm.
  • I made myself a little diary out of my memo app on my phone just for everything related to losing weight. I love it. I can go back and reread that time I almost gave up but didn’t. I can easily find that recipe I liked. And I can read all of the good advice and inspiration I’ve found on the innerwebz whenever I like. It’s been a very helpful tool.
  • Lastly, I track my weight and my waist because everything doesn’t show up on the scale. Heck, I know I lose from other places, too, and not just from my waist, but honestly I just don’t have the time to measure all of that. It’s exhausting. I’ve done it before and I tend to get obsessed and it’s just not worth it. So weight and waist it is!

And that’s about it so far!

Yes I’m only starting my third week, and no I don’t think I’m some sort of expert. But I am an expert on ME – a very goal oriented and determined person who is nowhere near the person she used to be and likely never will be again due to chronic pain and invisible illness. But I am smarter, more compassionate towards myself, and more understanding than I used to be, too. So determination + patience + willingness to learn + creativity + planning ahead + keeping it simple + trying something new = results. Or something like that.

Oh, I forgot to mention one more thing. I went ahead and joined a DietBet with Lexi. Why? Because I was afraid to do it, so I did it. Trust me, it doesn’t make sense yet it makes perfect sense to me.  I am also waiting for the day I wake up 15lbs heavier because it has happened to me so many times now… and I just can’t wait to see what happens if I don’t quit this time.

So am I going to be one of these irritating people who only talks about weight loss now? Hell to the no. But I am going to talk about it, because losing weight when you have chronic pain and invisible illnesses is, like I’ve said before, pure hell. And if the info I share can help or inspire one person to keep going when they want to quit, or to be more kind to themselves, or to try something new, or to take it down a few notches so they don’t irritate their symptoms, then I am satisfied. Completely.

I think the last thing I want to say is that I have done a lot of work on myself – learning my limits, learning how and when to rest, being proactive so as to not cause myself any extra pain, and putting in the emotional work in therapy to deal with everything that comes along with living with chronic illness. I don’t think I could embark on this current journey without having done all that first, and I truly believe this is most of the reason why I will succeed this time. Knowing yourself is half the battle, and being used to doing what is best for you is probably the other half. And it’s just not something you can do when you are constantly fighting against what your body needs.

At least in my humble opinion.

(:

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I Have This Picture…

I have this picture.

It’s a painting, really, and I don’t like it. It’s ugly and it doesn’t go with any of my décor. Sometimes I throw it in my closet for a few months but I always begin to feel guilty and hang it back up on the wall. I should throw it away, but I mean it’s a painting… and there’s no rips or tears…, it’s intact… and that’s something, right? I mean, if I throw it away I’ll have nothing. At least by keeping it I have something.

I could paint over it. I’m a pretty good artist. I’ve thought about the masterpieces I could create over that wretched thing. But what if I mess it up? What if I make it worse? I mean, at least now I know what I have, and it’s pretty awful, but I couldn’t stand to have something worse.

Yet it’s the perfect size to turn into something beautiful that I will be happy to see on my wall every day…

But what if I mess it all up?

I have this picture and it is what is going on in my life at this very moment.

The scariest times are just before you decide to pick up the brush. The second your hand touches the handle you are free – free to make a mess, free to create beauty, free to be. But before you decide… it is an eternity of self doubt and fear.

Choose to make a mess.

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The Art of Recovery

I’m back on the radio this week with a new installment of The Art of Recovery on Playtime with Sid & Bill talking all about ways to show compassion to people with chronic illness. Wait, you didn’t know I was on the radio? It’s ok. Sometimes even I forget.

The Art of Recovery is a weekly segment all about living with chronic illness and often has a very artistic slant to it; after all it is neatly tucked into Chicago’s only radio show completely dedicated to the arts. But how did it get there? Why is it there? Isn’t that weird? Who wants to hear about chronic illness on an arts show?

Years ago I connected with the lovely author of Fibromyalgia This: A Diary of A Pain Warrior, Ana Turck. It was her recipe for homemade bone broth that drew me in, but her intelligence, perseverance, and warmth that made me want to be her friend. I knew she was the first person I wanted to interview for my podcast The Flare and she kindly obliged (it was an AMAZING show fyi). A few months later she told me her husband had started a new radio program and was hoping I’d do a segment. The rest, as they say, is history.

Of course I was paralyzed with fear. Doing a podcast is one thing – I can do it, or not do it as often is the case, whenever I choose because it is mine and I alone am responsible for it. Doing a weekly radio segment is an actual responsibility and commitment – something my chronic illness does not like. Low and behold Bill & Ana had already planned for my flareups, which made me actually tear up and love them just that much more, and so began a very interesting journey for me…the chance for me to actually do something good with the hand I’ve been dealt.

I don’t make podcasts or write blog posts in hopes of becoming famous or because I think my life is so important that everyone and their mother needs to hear about it. I don’t share advise because I think I know everything because trust me, I know I don’t. Originally I began putting my voice out there as a form of therapy for myself, but I quickly learned that my stories had power as I began receiving countless messages thanking me for speaking up about my experiences from people who were also suffering but just couldn’t bring themselves to share it with the world.

So many times throughout my life I have wished there would have been something, anything, that I could relate to that could help me get through these very unique and difficult times that only those with chronic illness can understand. When I received enough messages to know that my parents weren’t paying people to say nice things to me (legit concern, people), I realized that I could be that thing, that person, for someone else. I could become what I always needed for someone else who might need the very same thing.

I’m not the best. I’m not for everyone. But I’m here for whoever needs me and I’ve spoken to enough people to know that there are so many of us going through the very same thing that we don’t need to feel like we are going through it alone.

If I reach and help only one person… that is good enough for me. I hope to reach more. I hope that one day not a single person with chronic illness is diagnosed and then just left in the dark to figure it all out for themselves. I hope that one day a person is diagnosed and their doctor says, “Here are some resources to help you,” and that it is a a gorgeous pamphlet filled with lists of radio shows, blogs, support groups (both online and local), Facebook pages, Twitter accounts, medical websites, and anything else you can think of. Whether or not I’m on there is meaningless; I just want it to happen. I’m happy with whatever life decides to give me.

And right now life has given me a weekly spot on a Chicago radio station where I can speak about my experiences with chronic illness and hope it lands in the ears of someone who needs it. And because it is tucked inside an amazing arts show I also get to interview artists that I personally admire and talk to them about how art has helped them heal or overcome struggles in life. That is the second part of why this opportunity is so special to me. I myself am a musician, artist, writer, and dancer and chronic illness took it all away from me. I was so depressed not just from the physical pain but from no longer being able to be myself. So I found ways to get back into all the things I loved and stopped focusing on what I used to be able to do and instead began exploring what I could do both in spite of my illness as well as with my illness.

It’s also important to note that the title of the show does not mean I am cured or that I’m going to tell you how to cure yourself. The “recovery” I speak of on the show is all about reclaiming pieces of myself that illness has stolen away, and healing internally so that I can cause myself as little pain as possible. It’s about coming back into the light after falling into the darkness and imagining new possibilities. And it is absolutely about how art has played a huge part in all of that.

If this sounds like something you’d like to listen to, you can hear The Art of Recovery every Sunday on Playtime with Sid & Bill from 1pm – 3pm Central on AM 1590 WCGO. You can listen live on their Facebook page, on their website, or by using any podcast/radio app on your phone (I use TuneIn Radio).

I hope to see you next week!

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Settling In

Things have settled down a bit over here. I mean life is still completely weird and every day I discovery a whole new level of insanity for every possible aspect of my life (a story for another time!), but on a whole I feel… settled.

I don’t know if it was winning my disability case afer fighting for 6 years, or if it’s because I now have a weekly segment on a Chicago radio station that makes me feel both accomplished and helpful, but lately I have felt more “myself” than I have in a very long time. The thought occurred to me that perhaps I just needed a 6 year long tantrum in order to get over my old job, my old hopes and dreams – basically my entire old life. Maybe. I mean it was a pretty awesome life, so I guess a 6 year long tantrum is pretty appropriate. But now my attitudes have shifted and I’ve begun to look at this new dysfunctional life as an opportunity as opposed to a crushing boulder sitting on my chest. I guess, basically… I’m moving on.

It feels odd to even say that. How do you move on from losing every bit of your identity and all of the capabilities that made you “you”? Honestly, I don’t really know how I did it myself. Maybe I just got tired of being miserable and pining for days gone by. Maybe I wanted to show my son that I can practice what I preach and truly make the best out of any situation thrown at me. Maybe I decided that my inner peace was worth more than my outer impression to the world. Perhaps I learned that I don’t always need to be absolutely outstanding every moment of the day in order to be worthy. Maybe.

I do know I learned to ask for help and lessen the unbearable load upon my shoulders. I know I learned to rest and proactively care for myself so as to cause myself as little pain as possible. I remember somewhere along the line coming to terms with what I could and could not control regarding my pain and overall health and abilities. And I distinctly remember thinking one day that  if I were someone else looking in on my life, I could possibly see it as though I have been blessed with the chance to live two different lives – an opportunity most people will never recieve.

Yes everything I used to do and be is pretty much gone. But strangely enough none of those things were what made me “me”. Maybe I’m suddenly calm and pretty content because I finally know that life could place me in a ginorous mud puddle and eventually I would still find a way to shine as well as help others to shine; it’s my nature. I’d be writing songs in my head, telling great stories, making beautiful sculptures out of mud, and doing my best to care for everyone around me and enjoy what I have – even if it’s only wet dirt.

So while it has been a tortureous experience, one that almost killed me… I can see how I could one day be thankful that it all happened if only because I have learned lessons that most people don’t learn until they are upon their death bed. I already know what I want to do differently, what really matters, and exactly who I am and why I am here. Had I been allowed to live the life I was living before, as satisfying and comfortable as it was, I would have never understood these things so soon. Are they more important than how I envisioned my career? More important than the future I had designed in my head? I can honestly say yes. All the things I was wrapped up in weren’t real anyways. They were simply ideas, constructs of my imagination and desires projected onto myself and everything around me. Knowing the truth trumps that any day.

Even if it takes 6 years to realize it.

So lately I’ve been simply settling in to this “new” life, exploring what is truly possible while finding ways to meet my true needs. There isn’t anything easy about it in any way, but I’ve learned that it does not need to be easy in order for me to be happy and fulfilled.

Yes I still have moments nearly every month where my pain brings me to my knees. Yes I’m still cancelling plans and sometimes in bed for an entire week at a time. But in these darkest moments I can, with full confidence, tell myself that I have been here before and I will certainly be here again and again… and that it always eventually passes. And maybe, just maybe the reason why I’m so settled is because I’ve begun to apply what pain has taught me to my entire life – I’ve been here before and I’ll be here again and again… and it always passes.

Only time will tell if this is what’s happening. I’d like to think I’m the kind of person that could learn and grow from pain and devestation and turn tradegy into something beautiful in the end, but there is always the chance that I finally gone completely insane. I do consider my mental stability when things get rough and this cockiness pops up out of nowhere and says “That’s all you’ve got? I’ve seen worse…” Which in a way is kind of nice. I like thinking that maybe there is still an undiscovered part of me that is just now waking up.

I can’t wait to meet her.

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Moving, and Moving Forward

For a long time I was told to keep moving in order to improve my fibromyalgia symptoms, but it never helped me. More often than not it would send me spiraling into a flare up of symptoms that would make it impossible to move for days, sometimes even a week or more. Yet over and over I would do what “they” told me to do because all these people saying the same thing couldn’t be wrong, right?

I’ve always been a person who has not only met but surpassed any goal laid out before me. So to constantly fail at simply moving every day was a very big blow to my self esteem. I started to believe what a few truly awful people and a lot of really awful doctors were saying – that I was just lazy. And they must be right because there was no other reason for me to not be able to do this very simple thing.

Fast forward to today where I’ve spent the summer learning the ins and outs of my newest diagnosis, Rheumatoid Arthritis, and receiving the proper medical treatment for it. For the first time in my life swimming is actually refreshing, whereas before it would feel good for only the first few minutes then slowly begin to crush me for days afterward. For the first time in so long I can actually feel the benefits of moving every day, whereas before there were only consequences no matter what I did or didn’t do. I now know that weird sensation of my finger joints suddenly feeling bigger than I remembered was not a hallucination because now my doctors feel them and record the ups and downs themselves, and that getting trapped under my comforter in the morning wasn’t because I wasn’t working hard enough in physical therapy – it was because my immune system was attacking my shoulder joints making them inflamed, painful, and weak. For so long my doctors just assumed all these things that are so clearly RA were  “just fibromyalgia,” proving that they neither properly understood fibromyalgia nor were properly caring for me, and I’ve lived every day second-guessing my sanity because of it until now.

Fibromyalgia still has that “garbage can diagnosis” stigma and it’s not doing anyone any good. If you are a person diagnosed with it, plenty of crappy people will take it upon themselves to wield that stigma like a sword and cut you to your core because according to that stigma there isn’t really anything wrong with you, you just have a bunch of symptoms caused by a whole bunch of things that are your fault, and you need to just do better and you’ll feel better. If you are being treated by a doctor who believes that stigma, how can you ever feel human when the person treating you believes your symptoms belong in the trash? If you are a doctor who believes that stigma, you are failing you patients who have fibromyalgia…and even more so the ones who don’t.

Now I still do have fibromyalgia – as well as hypothyroidism, degenerative disc disease, depression, anxiety, and now rheumatoid arthritis – but being treated as if that were my only problem caused me so much unnecessary pain. I’ve lost years of my life. I can no longer work. I’m a completely different person than I used to be. And all it would have taken was one doctor way back then to rebel against the stigma, properly do their job, and save me. But instead I saved myself by never giving up until I found the treatment I deserved.

I’m very thankful for my current medical team; they are quite simply amazing. I’m on two new medications for RA and the difference is night and day. I’m nowhere near normal, but my quality of life has drastically improved. There’s still a lot for me to learn about pacing myself and RA in general, but now I finally feel better when I move every day. Now I can make health goals and meet them, and every now and again exceed them. But along with the new diagnosis and medications has also come a new mindset, and all together that is ultimately what is helping me.

When I started to feel a bit better I went crazy and overdid everything. Cleaning, social visits, trips with my child – I went nuts. And then because I was feeling so much better my doctor and I finally decided to get rid of one of the last fibro medications I was prescribed. I was so excited! I continued to go crazy as I was nearly a full week free of that medication when I found myself doubled over in pain in the middle of a clothing store with my son, unable to move. The pain didn’t go away. It lasted for a full week and that is when I learned a few very important things.

One, I still have fibromyalgia and clearly need that other medication. I had to learn that my goal was not to be on less medication but to be on the medications I needed to feel better – no matter how many that may be – and that it was bound to be a good amount of them considering I still have several conditions as RA did not magically replace everything else. So I called my doctor and went back on that medication, and within four days I was back to what my new normal had been since I started my treatment for RA. Lesson learned.

Two, most of the things I was overdoing was because I thought I had to do them. I’ve learned that I do not, in fact, need to do all of the cleaning to be a good person. I can actually ask for help even if I’m not in pain in order to prevent myself from burning out or ending up in pain. I don’t need to prove anyone wrong; I just need to be happy. And I’m not happy when I’m doing everything.

Three, I still need to rest even when I feel good. This is possibly the hardest lesson I’ve learned so far. Doing nothing while feeling good feels like a slap in the face to feeling good. But then I had to ask myself why did I think that? The answer is because I was worried about what people would think. How lame is that? New rule – screw what people think and do what is best for you at all times. What others think has never helped you before, why would it help now?

Four, I do actually need to move now in order to continue feeling good. When the pain set in after I stopped that medication, I ended up in bed for nearly a week. I started taking the meds again and it took another four days of being in bed before I felt back to my new old self…except that my back still really hurt. I had a feeling that it was stiffness from not moving, so I bit the bullet and did some physical therapy exercises and in a few short days my back pain levels were way down again. Now that I’m being treated for RA l actually know what it feels like to feel good, and because I have RA I will become very stiff in very bad places if I sit too long. Five minutes of physical therapy a day is enough to combat that. Yes, it really truly is. But that was never the case before I was diagnosed and treated, so it’s been hard to believe it! But the evidence so far speaks for itself.

Five, learning to balance Three and Four is going to be a lifelong journey. It’s not easy! It almost requires me to have a schedule of sorts, something that I haven’t been able to stick to in years because my symptoms and pain were so out of control. But I’ve found that a very small amount of practice every day is actually yielding results. I don’t need to overdo it and I can’t not do it at all, but somewhere in-between it all is my very best life. And that is something that is worth spending my energy on.

Six, everything I’ve learned that I need to do now in order to keep feeling good never helped me before I was diagnosed and treated for RA because my symptoms were far too out of control – it was like throwing ice cubes at a house fire. I may not be able to educate every person who thinks they know what is best for me or what I should be doing in order to help myself, but I can change the narrative within myself when approached by these people and know that my instincts have always been correct from day one. So when stupid things are said to me or bad advice is passed on to me, I can confidently say, “Thank you but my medical team and I have a very good plan right in place right now and none of those things are in it. But thank you, again, for your care and concern.” Or just stick up my crooked, swollen middle fingers, smile, and ethereally float away.

Moral of the story is that there will always be dumb people, rude people, people who mean well but are ill-informed, people who don’t mean well and are ill-informed, bad doctors, good doctors who are ill-informed about your specific condition, people who mean something to you and have no clue what they are talking about, and people who mean nothing to you and are just know-it-alls and/or nosey and just like the feeling of superiority they get when they solve other people’s problems…poorly. But how other people treat you is their path and how you react is your own. And I know it’s even more difficult to stick to your path when you are in excruciating pain, feel abandoned by the medical field, and are questioning your sanity. But I think that if you are travelling a similar path as I have, take it from someone who is a little further along and keep believing in what you know is right, never stop looking for the better medical care that you deserve, and do not put any of these weirdos’ words in your own narrative because living with a chronic illness is a very rare thing that not many truly have a grasp on. I wish I would have learned that sooner.

And also flipping people off, smiling, and ethereally floating away from them. I totally wish I would have started that sooner, too.

 

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It Doesn’t Get Better, It Gets Different

I feel as though I’ve written about this before, yet I can’t find a single shred of evidence that I have. Maybe the feeling and the idea has just been with me for so long now.

I was very recently diagnosed with Rheumatoid Arthritis. After suffering for nearly 12 years with no name for what was wrong with me, I finally earned myself a Fibromyalgia diagnosis and proceeded to fight for proper care and treatment for another 15 years. That’s when I met the team who cared enough to listen. And because they did that, I am now being treated for RA.

I began my treatment in the beginning of summer and I could feel the difference with the very first injection of methotrexate. I know it takes around 8 weeks to feel the full effects, but I most certainly felt something change for the better immediately. The week after I found myself lazily coloring with my 3 year old nephew out of the blue and it took until we were nearly done for me to remember that I hadn’t been able to color, draw, paint, or write by hand for about 10 years. I caught myself doing origami with my son. I even French braided my hair. I wasn’t forcing myself to try any of these things; I was simply doing what felt natural at the moment. And then the medication began helping me so much that I eventually went overboard – but boy did I enjoy it.

What I didn’t enjoy, though, was the after effects of overdoing it. At one point I ended up writhing and rolling on the floor, crying in pain, after cleaning way too much of the house. I scared my son. I scared myself. It was time to calm the hell down and realize that even though I sometimes felt like my old self, I wasn’t my old self.

And that is the paradox of “getting better” when you have a chronic illness.

I soon started Enbrel in addition to the methotrexate, and it has been an entire world of difference. I’ve driven to see my sister more times since starting it than I have the whole year prior. I took my son to Great America twice, but the second time I ended up in laying down in pain my sister’s van for the second half of the outing. I’ve been able to play my guitar, something I had to give up 6 years ago. And my daily level of pain is down significantly – I can just “be” and not be in agonizing pain much of my day, unless of course I’m in a flare.

And that all sounds amazing, right? And it is amazing! Except that the actual change in my daily life isn’t much of anything.

I still cannot work because my symptoms are still wildly unpredictable. Fatigue has been crushing me since I started these meds and I often lose an entire day to sleep. These meds make me highly emotional, so I cry about nearly everything right now. I still can only use my arms so much – even if it feels ok I have to set strict limits so that I don’t overdo it and hurt myself. Things are so much better for me right now yet in so many ways they are exactly the same that I almost want to stop saying that I feel better and instead simply say that I feel different.

And I do feel different. I can have a day where I do nothing and not be in pain and it feels so damn amazing, but the guilt always sets in. I should be doing something. The house needs cleaning. I should take my son somewhere. I’m feeling fine so I should take the opportunity…and so on. Well I’ve taken the opportunities and abused them so many times now that I don’t really trust myself anymore, so I save it for really special things that are totally worth the pain. But that leaves a lot of days where there is just nothing… and it is driving me insane.

Now here is something I do recall writing about before – not knowing what to do with myself. Wanting to be productive so badly but being physically incapable of doing so. And now that I’ve gotten a taste of the old me I feel like I had an addiction to accomplishing things in my old life and now I’m relapsing.

I had a really, really good run once both of the new meds  were working in my system and ended up feeling great for a few weeks in a row. So I ignored the new calm the hell down rule and tore up my rug and painted my table and organized drawers and then fell into a flare right in the middle of it all and woke up one day in a werid foggy pain, barely able to walk through my dining room because of all the projects I started at once, and immediately felt overwhelmed in a very, very awful way. Having to stop hit me hard. I thought I knew my new limits but they were as unpredictable as before, and I fell into a bit of depression because of it. I’m once again climbing out, just as I was the last time I wrote about wanting to be productive. But having to live with the mess I made while trying to be productive was possibly even worse than the flare itself.

So I’ve had to make some very hard choices about what it means to be feeling better, er different, and what I want to feasibly do about and with it. I think the only good that has come of it all is that I have finally decided I am done using my better for cleaning and projects that are simply too big for me and will be finally getting help.  I even decided to let go of grocery shopping and used an order online and pick up at the store service today just so I didn’t have to lose an entire day to groceries. And it felt amazing!! I was able to put all my groceries away as soon as I got home, something I can never do because I’m either crying or in a pain coma. But I put them away, made myself a great cup of coffee, sat down feeling very accomplished and pleased with myself… and proceeded to have *nothing* to do for the rest of the day.

It’s not easy finding the balance here. I know I’m done torturing myself and that I’d like to use my feeling better for good, like for myself or for my child, but when my son isn’t home there is quite literally nothing for me to do. Because I don’t really have a life anymore. So I don’t know what to do!

Yes, this girl needs a hobby. I love music and have been able to get together with my father and a few other good musicians and play about once a month since my new meds, so there’s that. But it’s not enough. I love writing, but I am limited to about 30 minutes on the computer before I cause myself serious pain. That is the same problem I run into with working on my podcast – limited computer time. I can only work on it for so long. I read somewhere that I should get on a schedule and I thought “Yes! This is the answer!” and then I laughed myself silly. The problem with being on a schedule is that it works great until you are in flare and lose two whole weeks to it and reemerge from the pain cave just to start all over again. Hence half the reason why I don’t work – schedules. If you can’t stick to it, what’s the point? I’d need like three different schedules. One for good days, one for ok days, and one for flare days. Who does that? Me? Maybe? No. No. I’m not doing that.

I suppose if I could sit around and not do anything and just be happy doing that my life would be pretty good right now. I hate to come off as not being happy for having less pain, and please know that couldn’t be further from the truth. It’s simply that less pain and more fatigue and unpredictable limits brings more problems that need to be solved – problems that I do not have the answers for because I’ve never been here before and I’m simply doing the best I can. I find it as freeing as I find it frustrating. I’m as happy as I am irritated and lost. I’m as clear as I am confused.

This is a very strange place to be.

It’s certainly different.