Unmasking

Some days the pain is too much to bare. Those days where nothing you do throughout the day makes you forget about the pain or eases it. On those days, I lay on the floor in an attempt to relieve at least my back and neck, and let the tears roll down my cheeks. Those days make me mad. Like really mad…PISSED. Then I do something really productive and get mad that I’m mad.

I do everything in my power to control my health which I know with 3 autoimmune diseases (fun fact, there’s a fourth making it’s way in), is an oxymoron in itself. These diseases are uncontrollable. They attack. They do what they want, when they want. Kinda like me so I get their vibe. When I have these days, I feel helpless which is a feeling I absolutely HATE. I like to think I’m not afraid of anything, but in actuality I am. Loosing my independence is my greatest fear. Getting to a point one day where i can’t walk on my own or get dressed on my own terrifies me. That’s why I hate asking for help; it implies that I can’t do it on my own. I take care of myself. Always have and always will so I’ve learned and employed lots of tactics to make my not so great days easier on myself which is so very smart of me I know but some days, I don’t want to do any of that. I don’t want to use these tactics, I don’t want to talk about it, I don’t want to try and be positive. All I want to do is hit something and scream.

On those days, it’s time to unmask myself. What I’m learning through this flare up is that it’s actually important to have these days. I have a passion for life that I can’t quite put into words. I love life. I love living. I love having new experiences everyday. I love challenging myself and pushing myself to my limits. I love being in nature. I love laughing. When going through my bad days, I get mad at myself for loosing my joy because there’s nothing I can do about it and I always aim to find ways to get through the uncomfortable moments. But if we don’t allow ourselves to feel all of our emotions, good, bad, and ugly, then they manifest in other ways. You might find yourself trying to open a bag of lettuce for dinner and start to cry. What? Is that just me? Opening the bag wasn’t THAT painful, it was just the straw that broke this very tired camel’s back. Like damn…even this hurts???

Instead of trying so hard to control every little aspect of my life, I will try to navigate each day with ease and understanding for myself. Too tired to talk? That’s ok, my thoughts are very entertaining in themselves, no need to voice them. Want to go outside but the sun will for sure take me down? That’s ok, I love sitting on my window sil and can see the ocean from there. Feel like I have the flu, was hit by a truck, and hungover at the same time? Well, good thing I have a comfy bed because it looks like I’m about to spend the whole day in it. Things might suck but they won’t suck everyday. Instead of forcing myself to act like everything’s ok, I will take better care of myself and my body. There’s a difference between surrendering and accepting. I need to be better at accepting that some days I can run but on some days I can’t get out of bed. What I will never do is surrender to any of my diseases and let them control my entire life, all day, everyday. Just do what I can, when I can, and have so much fun doing it.

I think no matter what your circumstance might be, we could all do a better job of taking care of ourselves. If you’re reading this, I want you to do one thing everyday that brings you pure joy. No matter what you having going on. Make it a priority. Make yourself a priority. You are all you have. You have to take care of your physical and mental well being before you can do anything worthwhile in life. At the end of it all, if you did not enjoy your journey, what was the point of it all?

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Don’t Stop Eating, Don’t Stop Believing

Sometimes, I really surprise myself with the cleverness of these titles. But I digress…so as you know, I’ve been going through a flare up and yesterday, something happened that I wasn’t prepared for. I couldn’t really drink any water all day without stomach pain which I found bizarre and then I ate…the same thing I eat everyday- yes, I eat the same thing everyday, thrilling, right?! And well, it did not go well. I was doubled over in pain afterward for about an hour and then in pain for the rest of the night and all day today (it’s currently 3:45pm so there’s still time to turn this around!). This type of stomach pain hasn’t happened to me in quite some time and made no sense to me as I do not deviate from my diet for this exact purpose. More than being in pain, it messed with my head. Not this again? I can’t go through this again! I don’t want to go through this again. So I spent the rest of the night alternating between anger, sadness, and then decided to channel my energy elsewhere to distract myself from the pain and decided to clean my apartment. You know who thinks it’s a bad idea to vacuum your apartment at 1am? All of your neighbors.

This morning, waking up already in pain, and exhausted from no sleep, I decided to fix it. I had my pity party and now it’s time to get down to business. I don’t want to be in this much pain and I’ve felt this pain before so I know it can be fixed. I pulled out my medical records and all articles that I’ve saved regarding Lupus research. When I say I make my heath my number one priority, I am not messing around!

The summary of my findings is that inflammation from Lupus causes damage to the gut wall and disrupts the bacteria that is present. Because of my flare up, I am currently experiencing higher inflammation levels than I normally do AND I don’t have any good bacteria in my stomach so there we have it folks. The stomach pain now makes perfect sense. So what am I doing do to about it? A few things:

  1. I’m going to try to get some good bacteria in my gut asap. A lot of things are good for gut health but Amira problem 100000 says I can’t have most of them for other reasons we won’t get into so I need to be clever and find ways to eat the good stuff.
  2. I will not stop eating. There’s going to be some pain for a while but that’s ok. What I will not do is stop eating because it hurts and loose any strength or energy I have. I will just eat what causes the least pain and find what works for me and makes me feel my best for what I have going on right now.
  3. I will not loose myself. I consider myself to be a positive, happy person, who like to have fun and enjoy life! And just because something happens that I wasn’t expecting, something I work hard on to avoid, doesn’t mean all of me should suffer because of it. I will remain happy and find joy in the everyday little things like I always do. Life is to enjoyed, not endured.

Today’s Win

Here we go again with a dose of positivity. I know…I know…it’s so annoying. But the good news is, I always put a sarcastic twist on whatever I say so at least you’re bound to be at least slightly entertained.

I have not been feeling my best lately; I think it’s a slight flare up…fevers, headaches, dizziness, nausea, fluctuating body temps, fatigue, joint pain, inflammation, face is swollen, distention, and brain fog. It’s not so severe that I can’t get out of bed; I seem to have about half a day of worth of activities in me which for me consists of gym then getting as much work as possible done before I crap out and trying to get some outdoor time if I can.

In all honesty, some days when I’m not feeling well I get so mad at my body that I decide to show it who’s boss. So I’ll do things like workout for 3 hours or however long it takes me to be in extreme pain which is my indication to stop. If I’m not going to feel well anyways, I might as well do something that makes me happy and makes me feel like I have a strong and powerful body! I should note here that nothing I say should be taken as medical advice. I know I sound like a professional but really folks, use common sense, not Amira sense.

So since I haven’t been feeling well for a couple of weeks, I have been hitting the gym extra hard. Lots of these marathon training sessions have been going down and today…well, barely anything was possible at the gym especially after my 5 mile run on the beach yesterday that my back and neck did not respond well to. So I decided it was time for some bodywork which has become my most hated form of recovery.

During today’s clinical massage session and active release therapy, I thought to myself that for sure my massage therapist was trying to kill me. There could be no other explanation to what was happening other than that. I also thought, that’s it, I am not doing this anymore. This is bat shit crazy to be in this much pain. No more races. No more gym. I’m going to be a couch potato. I’m also going to give up all my side jobs and just focus on my 9-5 accounting job because it’s just too much. Side note, does anybody else think this much during a massage or do ya’ll actually find them relaxing?

Sometimes when I’m not feeling well, I want to give up. I want to retreat. To go back to a life of solitude, to no longer fight so hard to be able to do the things that I love. I don’t want to fight all the time! I just want to be me. But something very surprising happened after my hour long torture session. I didn’t cry! I could walk up the stairs! Yes, I’m in pain but who cares! This is a freakin win. This is the first time after a massage that I’ve been able to use my hands, walk up my stairs without feeling like I was hiking Everest, and without crying. THIS IS A FREAKING WIN FOLKS! This means my body is getting stronger and more resilient. This is what I work so hard for; day in and day out at the gym, giving any energy I may have to focus on my health.

Not everyday is going to be great, but there is good in everyday. I may be in pain, I may be going through a flare up, but my body is getting stronger and that is my win for today and couldn’t be happier about it. So while I may be asleep by 8pm…I will sleep with a smile on my face.

A Day Without Pain

I have never known a day without pain. It’s always something everyday but I don’t think of it that way. I’ve learned to employ tactics to not just get through everyday but to live a life I love and do things that bring me joy so when I can’t do the things that I love despite all that I do to stay on track, I get really mad at my body.

On a beautiful Friday off of work, I moved through my morning sporadically bursting into tears, for what seemed like no reason. I hit the gym as usual at 6:45am and cried after my first workout. Mad at my body for being in pain, I decided to show it who’s boss, I worked out for two more hours until my legs had nothing left in them. The tears were still there so I walked down the beach, thinking too many thoughts, damn near yelling at my beach buddy, crying- really crying; the kind of cry that takes the weight of years built up off your chest and leaves you feeling hungover.

Instead of regaling you with stories of the days I don’t feel well and how I remain positive, I want to indulge the thoughts no doubt every chronically ill person has had- I want to describe to you what I would do on a day without pain.

I would wake up before sunrise, get a hot cup of coffee with real dairy creamer and sugar, and watch the sunrise over the beach as I walked down the beach with no inflammation from the humidity, no joint pain, and no back pain. I would then go out for breakfast. I have not had a real breakfast since 1996 so this is going to be good. I would have fried eggs over chicken fried steak and hash browns, and a Belgian waffle with strawberries, whipped cream, and maple syrup, and at least two mimosas with fresh squeezed orange juice.

Next up, a drive down the coast to Big Sur with no worries about bringing food with me, if my energy will last through the whole drive, and having to bring alkaline water and medicine with me. I would spend the whole day hiking, kayaking, paddle boarding, and doing something like skydiving or paragliding.

On my way back, I would stop wherever I was to watch the sunset. With still an abundance of energy left, I would call up some friends to see who was free for dinner and drinks. I would have Mexican food for dinner and Doc Burstein’s birthday cake ice cream for dessert- maybe chocolate cake and cheesecake too. I would then go to a roof top bar and enjoy whatever drink I wanted to and dance the night away without a care in the world.

If you are reading this and think, this sounds like a regular weekend for me, all I ask is that next time you do any of what I mentioned above without pain, please take a moment to appreciate your body, appreciate your life, and stop complaining about the things in life that don’t matter. Please always remember to live everyday will full intention, challenge yourself to be better than you were yesterday, help others along the way, and damnit , have fun! Life is too short to be lived otherwise.

Buy Your Own Flowers

Let’s talk about flare ups! They suck! Right? No other way to put it. They downright, flat out, just suck. You’re doing well for a few weeks, maybe even a month or two, and out of nowhere, one day you wake up and you realize the feeling of what’s about to happen to your day (maybe days, week, weeks, or months) immediately.

I woke up yesterday, on my last day of vacation, and couldn’t bring myself to get out of bed. So I stayed there until I convinced myself that coffee cures all and got up to make a cup…and another…and another. I was so exhausted and inflamed. What the hell man? I was fine yesterday! I stayed in bed until about 11am which if you know me, you know that is NOT normal. My internal clock wakes me at 5am everyday, and I bounce out of bed, begin my morning ritual of reading, writing, drinking coffee, and head to gym.

I convinced myself that dragging myself out of bed and doing something would help snap me out of it (cause, yeah, that’s how that works). So I drove to beach, sat in my car, and realized that there was no way I was going for a walk. I had negative amounts of energy in my body. So I decided to go shopping because there’s nothing like retail therapy to make you feel better! I drove to a store I’ve never shopped at before and had no idea why I was there. The brain fog is real folks. So needless to say, I did not get out of my car again. I mustered up some form of human resemblance and went to the grocery store to get some food, but most importantly, fresh cut flowers.

That hour out of the house really took me down. I came home and had nothing left in me. Now to exhausted to even make myself lunch, I put the flowers in my room, and flopped back to bed. I was too tired to speak, read, or even watch tv. I just laid there unable to sleep, listening to music.

The whole point of this lovely story is that taking care of your mental well being while going through a flare up is equally as important as taking care of yourself physically. Those of us with autoimmune diseases tend to isolate ourselves because we never know how we’ll feel. When somebody makes plans with us, the panic sets in. Is it at night? I’m usually too tired at night, having spent what energy I may have had that day in the morning. It it somewhere cold? Humid? I don’t do well in that environment. Is this a food related activity? Oh forget it! I’ll stay home. Well, that is completely understandable but in actuality, you are doing more harm than good to yourself. The more you isolate, the worse you will feel. Make the plans! Go out! And if you cannot, then cancel those plans. It’s not the end of the world. Your friends will understand and if they don’t, do you really want those people in your life?

Yesterday, was the Superbowl and I had plans to watch it so I tested myself by going out in the morning and it was clear that nothing of the sort was happening on this day. So I canceled those plans. What I did for myself instead is buy myself flowers. This has become a ritual of mine. Whenever I’m not feeling well, I buy myself flowers. I love flowers. Their beauty makes me smile. And when going through a flare up, we must remember to smile. It’s so easy to get down, become negative, and mad. But what else do we know about Amira? I don’t like easy. I’m in a constant state of working on remaining positive even when the negative thoughts hit. What if this flare up lasts two years again? Well, if it does, it does, and I’ll pull myself out of it again while buying lots and lots of flowers; maybe even a nursery!

Find things that bring you joy, make you smile, remain positive even through the crap times, and most importantly be kind and understanding to yourself. You go through enough on a daily basis without adding unnecessary pressure of being a perfect human everyday. Do what you can, when you can, and always remember to have fun no matter what! It doesn’t matter how many times you fall; what matters is how you fall and if you choose to get back up.

If you know someone with Lupus or any other autoimmune diseases, please read the Spoon Theory written by Christine Miserandino. An analogy of what it’s like to live with sickness or disability.

You do You

A few days ago I completed my third Spartan sprint. This race’s experience was very different than the rest of them. I raced with the team I had spent two months training with. If you’ve been following along (of course you have!) you know that I use the challenges I face to propel myself through my races. This time was different. Instead of racing with anger, I raced with joy and as always, I kicked ass and had so much fun!

Recovering from any physical activity is normally a challenge for me and on top of my usual hurtles, I’m still recovering from a herniated disc in my back and one in my neck. What kind of idiot races with so many injuries, you ask? Me. That’s who. Why you ask? Well, let me tell you.

I’m going to take a step back for a second for some context and reference a movie I saw today, “The Upside”. For those of you who haven’t seen this one yet, it’s a true story based on a quadriplegic man, P, who was injured while doing what he loves, paragliding. He hires an unqualified caregiver, to the untrained eye, who becomes a lifeline he was in desperate need of. I didn’t think this movie would resonate with me as much as it did. It spoke to my soul in so many ways. This man had so much anger inside of him for not being able to control his life, for not being able to do what he wants to do, and for being too much for most relationships he’s encountered. So many moments during this movie made me loose my breathe.

I got chills when P becomes angry and mentions he would like to be able to control one aspect of his life since most of it was uncontrollable. That’s what I want too! Control. I employ so many tactics to stay on track to feel my best and to remain this way and when I’m not feeling well, I get angry. Pissed. I’m doing everything I can and still? Really? Come on!

P goes on a date with a woman that he had been corresponding with via letters for a year and everything was going well until she has a moment when she realizes what her life would look like with him and panics. Says, “this is too much” and the date ends. He then proceeded to push every person who cares about him away; choosing to live in solitude. I got angry. This anger comes from fear. I know I’m too much. I’ve seen people leave at my worst, health wise, and then want to come back when I feel healthy. Too late. You’ve already shown me that I’m too much. The anger comes from the experienced pattern. The fear is that it will be a continuous pattern so I’ve chosen to live in solitude (slowly trying to break that pattern for myself).

What P was missing from his life was joy. He stopped doing what he loved because of fear. Look what paragliding did to him?! Why the hell would he ever do that again!

Since my race, I’ve been a mess. My stomach is not happy with me for not feeding it before the race. I don’t eat before I race because I never know what food will do to me so I don’t want to risk it. So I go basically 24 hours without eating, doing the most physical tasking activity I do all year. I have so much built up acid that I’ve been in a constant state of nausea since the race. The day after the race I couldn’t stomach water or eat. I’m now able to drink water and eat a little so…progress! I’ve also been having pain in my back but mostly in my neck that’s radiating down my right arm and making my hand go numb. By the end of the day, I can no longer pick anything up or use my hand. If I have to drive, I drive with my left hand only. I know I need to go get bodywork done but it makes the pain worse before getting better and I just can’t stand any more pain in this moment.

I look at people who raced beside me who, the next damn day, were able to go to the gym, lift weights, and run, and it makes me angry. I would give anything to be able to do that. To do a race, something I love so much, and bounce back with nothing but joy and no significant pain. I start thinking and saying to myself that the pain during training and recovery is just not worth it and that it’s time to stop racing. I don’t want to be in this much pain anymore.

At the end of the movie, P goes paragliding with his wheelchair. The smile on his face is contagious. The anger leaves his body and is replaced with joy; the joy is abundantly clear and warmed my heart. When I think of what racing and being able to be physically active means to me, I smile. I feel a level of happiness that is unmatched by anything I’ve ever done with my life (and I’ve done some impressive shit ok?!).

So what I’m taking away from this is something I tell myself over and over again but sometimes you need to see it to believe it. I will do whatever it takes to be able to keep doing to the things that bring me joy. ANYTHING. This includes experiencing some pain during training and recovery. This includes doing things differently than most. This includes not being angry when people are recovering well and I feel like I need a solid 100 hours of sleep. At the end of the day, we all must do the things we love in a way that is conducive to our being; our mind, body, and souls. I promise myself I will challenge myself and push myself to my limits while being kind and understanding to my body. Do the best I can everyday, no matter what that day looks like, and understand that my best can and will look differently from day to day. I will approach everything in my life with joy rather than anger, including recovery and dealing with pain that I know will be there. That’s what I’m going to do for myself. What will you do for you? You do you.

Fight your Mind

Hey! Remember that girl that said she was in search of balance? Well, she hasn’t found it yet.

I have been scaling back a little and strength training twice a week, cardio 3 days a weeks, and incorporating more yoga into my daily routine but it turns out that amount (or perhaps style) of strength training is till too much for me. I left the gym one morning and could barely walk the rest of the day. For the next few days, I had extreme pain, mostly in my legs, and didn’t seem to be improving so I went and got a physical therapy massage (they really shouldn’t call it that but whatever). During this “massage” every part of my body was worked on and I screamed, cussed, and cried. I have a very high threshold for pain so I usually can hold in all that but I couldn’t. I almost told him to stop. I cried in my car the whole drive home and when I got home, starred at the three flights of stairs it takes me to get to my door like it was Mount Everest. Every step I took, I cried. It felt like I had been hit by a truck. When I finally got home, I took a shower, and slept in my towel as I could no longer move. I woke up the next day hoping for some relief but I couldn’t sit, lift my right arm, and the stairs are still my nemesis. I am also four days out from my next Spartan race so I am trying to remain positive and hope that my body can get its sh*t together and be ready come race day.

To be completely honest, I have been struggling lately with accepting the fact that my body cannot physically perform the way I want it to. I want it so bad and am stubborn and hate surrendering. I know that I shouldn’t be doing this to my body but my mind is still resisting this fact and refusing to accept it. It will take time for me to accept this but that’s ok. I will continue to try and find my balance and in the meantime, allow myself some grace and understanding. When my mind starts to dwell on the negative, I know it’s time to hit the beach. It’s my solace. The only place that can truly clear my head and rejuvenate me. As I stepped on the beach, felt my toes in the soft sand, and sun hit my body, I burst into tears. I released my anger and let the sound of the waves wash over me. This will be a long process because I finally had a taste of a strong body and now, I don’t want to be otherwise. But I’m here, I’m happy, and the beach is all I need.

So while I have yet to find the balance that will work for my body and my mind, I am determined and whatever it takes, I will find a strength training program that works for me. I will NEVER be the girl that cannot open her fridge or the door to her apartment again laying in bed with no strength and energy. NEVER.