What Works For You

Alrighty Spondy Followers, Supporters, and Fighters....

I have decided that I want to share some ideas on how to stay moving, healthy, and give you ideas on how to keep pain at bay. I am going to write some blog posts that share ideas on how to stay active and what tasty starch free meals are available. For anyone reading this that does not have A.S., you may find that these movements and recipes can be beneficial in your own life. Many of us suffer from inflammation, injury, back pain, or arthritis. These posts are for you too. Read them, share them, love them, and find what works for you! I will, of course, continue to update you on my own journey… because it’s me, and Lord knows I love to blab… even via blog. :-D

Movement or Mobility Idea

SWIMMING. Okay, let’s talk swimming. Swimming is one of the best LOW IMPACT exercises out there. It is also great for your cardiovascular system and helps develop muscle. It is one of the most recommended exercises for those with AS, arthritis, or recovering from injury.

Now, I understand that not all of you love swimming or feel that you are “strong” swimmers. That is okay. Swimming is like anything else, you get better by DOING it. For those of you who feel that you are not “strong” swimmers, or that the water makes you uncomfortable, I urge you to reach out to someone you know who loves to swim. Ask them for pointers and tips, or even better… ask them to go with you. If you can manage to buy yourself a swim lesson or two, I think this is a great investment. It is no different than paying for a trainer or class at the gym. DO IT.

I grew up swimming and was on a competitive swim team for 10 years. Since then, I have been a lifeguard, swim and dive coach, and lesson instructor. I am lucky that swimming is such a natural form of movement for me. I hope that swimming becomes a great source of training, recovery, and mobility for all of you.

First, you may need to know some basics. A standard pool is going to be either 25 yards or meters. Ask someone at your gym or on staff at the pool whether your pool is measured in yards or meters. A standard college or Olympic length pool is 50 meters, but you will not see these at a gym that often. A kick board and a pool buoy are good pieces of equipment to have on hand. Most gyms provide this equipment as well. A length means swimming down to the end of the pool. A lap is swimming to the end of pool and back. Most people swim the stroke “freestyle” and it is a good stroke to start with. Your legs should be straight when you are kicking and your hands should be is a somewhat“scoop” shape when you pull. Make sure that you are comfortable putting your face in the water and floating before you work on lap swimming. Knowing how to do a "side breath" will also make lap swimming much easier and efficient for you.The following is a good place to start once you have your basics down.

4X25 yard freestyle SWIM- (warm up) Take it easy and rest on the wall as needed
4X25 yard freestyle KICK- (straight legs, pointed toes) Use a kick board and rest on the wall for 30 seconds in between each length
4X25 yard freestyle STROKE- (just arms) Use a pool buoy. This will go in between your legs and allow you to work on just your stroke. Rest 30 seconds at the wall in between each length.
2X25 yard freestyle SWIM (full stroke)- Think about what you were working on when you isolated the kick and the pull. Rest 10 seconds in between lengths.
2x25 yard freestyle SWIM- (full stroke, sprint) Try to increase your speed and take less breaths. Rest a full minute before swimming the second length.

4X25 yard SWIM- (cool down) Take this nice and easy, breath often. Feel free to do freestyle or breaststroke if you know it. Rest as needed between lengths.

Feel free to modify this as needed. Swimming is a lot like running… Sometimes you start out slow and take a lot rest. You start with low distances and work your way up. Don’t be discouraged.

Okay. Now, LET’s TALK FOOD

Poblano Peppers stuffed with Shrimp, Chorizo, and Bacon!

Ingredients
2 poblano peppers

4 strips thick-cut bacon

1 small sweet onion, diced

2 cloves garlic, minced

¼ lb pound  Mexican chorizo

1 cup previously grilled or sauteed shrimp, chopped

Directions
1. Cut the Poblanos  in half and deseed them. Lay them on a cookie sheet with the outside or skin of the pepper facing up. Drizzle the peppers with oil. Broil the peppers for a couple minutes on High. Be sure to watch them closely. You want the peppers blistered, but still firm. Set aside to cool.

2. Cook the bacon at medium/low heat until crispy. I like to cook it at that temperature so it slowly releases the grease and cooks more evenly. Remove from pan and let cool and then chop finely.

3. In that same pan, add the onions and garlic. Season lightly with salt and pepper and cook for 6 to 7 minutes. Add the Mexican chorizo and cook for another 6 to 7 minutes, breaking down the chorizo as it cooks. If there is too much grease in the pan, drain it. It’s much easier to work with a filling that is not too wet. Add the bacon and shrimp to the mixture.

4. Turn the peppers over and fill with the mixture. I find it easier to just use my hands to fill and press the filling in gently. Top the peppers and mixture with cheese. Broil the peppers on high just until the cheese is melted.

5. Pull peppers out and let cool for a couple minutes. Then… ENJOY! Here is a picture of the end result. A serving can be ½ a pepper or a whole pepper depending on how hungry you are. I had mine with salsa. J

The meal is loaded with yummy meats, shrimp, and cheese… and it is STARCH FREE! I thought it was fantastic, so I am hopeful you think the same. Let me know your thoughts.

Update....

As for me, I am doing fine. I am staying busy, but trying to keep my stress levels down. I have been experimenting with a low starch diet again, but it is hard to stick to especially when traveling and going out. Speaking of traveling, I have been doing a lot of that. Recently, my boyfriend and I took a trip to some hot springs both in February and March. We went to the Princeton Hot Springs here in Colorado and the Saratoga Hot Springs Resort in Saratoga, Wyoming. The hot springs are filled with mineral waters and they are said to have healing effects. I definitely feel like my body and my AS benefit from soaking in them and have tried to incorporate more hot springs in my life and travel adventure. Other than that, I just started biking again. I have not been on my bike since November and I am feeling a little rusty, but excited for the warmer weather. I am still only taking an anti-inflammatory and using physical therapy and yoga to help myself work through any pain and stay mobile. All and all, this girl is staying on top of her A.S. and enjoying life! Here are some pictures from my hot spring adventures…

Keep doing what works for you. And if something isn’t working, don’t be afraid to try something new. Until next time… Take care of yourselves.

Love,

Amanda

Time is a Wastin'

2016. I can’t believe another year is over and another one has begun. Now I am starting to sound like my mother… Before you know I will be looking at high schoolers and telling them, “these are the best years of your life” and “before you know it, it will all be gone.” Good grief. I am pretty sure I have already looked at my boyfriend’s 4 year old and told her to "hang on" to her youth. Crap. I guess there is no escaping it.

The truth is we always want control over the things we ABSOLUTELY have no control over. Maybe I shouldn’t generalize here… Maybe it is just me who tries to control the uncontrollable, but I highly doubt it. Anyways, time is one of those things. It is always fleeting. It never stays around for more than a second. In fact, it’s usually gone before that. I guess that’s what is so frustrating about time. The moment you think you have a handle on it, it’s gone. All we have is now. And now, now is gone. Sheesh.

But maybe, it’s about perspective… It is not about controlling time or stopping time or “making” time. Maybe it’s about flowing with time, accepting time, LIVING in the time you have. The truth is, no matter how planned out you have your life, it will still surprise you. That’s what happens when you have no control. Isn’t it fun? Ha. Well, it is at least interesting. And, sometimes it IS fun. Sometimes, it is heart breaking. But, I promise “time will tell” (I am so punny here), and you will learn something.

It shocks me that it has been a little over 3 years since I was diagnosed with A.S.  How can it have been that long ago? How can it have ONLY been 3 years? I remember walking into my Rheumatologist's office with a list of over 20 questions to ask him about A.S. and my future. I wanted to know what drugs there were and what their side effects were. I wanted to know how many people ended up fusing and losing mobility. I wanted to know if I could still have kids and when I should have kids. I wanted to know how the drugs would affect a pregnancy. I wanted to know how long I would be mobile. I wanted to know about diets, supplements, and remedies. I wanted to know what my life would look like in 1 year, 3 years, 10 years, forever… Before I even saw my rheumatologist, I was prescribed Mobic 15 mg, once a day. When I sat in my doctor’s office for the first time, he told me we would be lucky to get ONE YEAR out of this medication. After that, I would likely have more intolerable pain and have to discuss other medications; most likely TNF blockers. To be honest… THAT SCARED THE SHIT OUT OF ME. A year?!?!? How was I supposed to plan my life out in only a year? Was I supposed to have a kid so I didn’t expose it to TNF blockers? Was I ready to take drugs that cautioned “THIS MAY CAUSE CANCER?” ONE YEAR?

But, time is fluid, and as I said, uncontrollable. I have been on Mobic for 3 years now, and I have cut my dosage to 7.5 mg. I take it approximately 3 times a week. None of this is to say I have not faced challenges in the last three years with my AS. I have had flares, had to take a steroid pack, change my diet, continue to be active, and know when to lay off. Some weeks I have to take my anti-inflammatory more often. Most recently, I had to go in for blood work every 4 weeks from October-December to monitor my elevated white blood cells. My body is still fighting and still inflamed, but I am learning how to help myself through it  rather than panic on what it means or how much time I have. The point is, you can’t predict the future, you can’t control time, and you can’t try to plan your whole life out in a moment.

In the last 3 years, I have become stronger (mentally and physically), I have had my heart broken, I have stressed out, been devastated, fallen in love, and experienced pure joy. I have challenged myself, been proud of myself, I have done triathlons, run 5Ks, hiked to the top of mountains, traveled, biked Pikes Peak, and raised over $3,000 for SAA. I have created new friendships, strengthened old ones, lost people, gained family, laughed, cried, and mostly, I have surprised myself. Life has been, and will continue to be, a roller coaster. All you can do is work with, and react to, the moment you have at hand. And as for the rest, just hope for the best. You never know what lessons lie ahead, but as I already said, time will tell. Accept the journey and let time do its thing, you just keep doing yours to the best of your ability. Until next time… ;)

Hugs,
Amanda

My weakness, My strength

I remember the day I found out I had AS. I remember the exact moment so clearly... I was in my office at work... I had been having intense pain in my sacroiliac joints and lumbar spine for over a year at that point and it had been only getting worse. Some days I couldn't sit up, let alone stand, on my own. I had been calling into work sick more frequently and I had been in PT for over 4 months. The pain still crept up on me and consumed me. I was fixated on something I could not find an answer to. I had recently had two MRIs done and found out I had bilateral inflammation in my SI joints. I was told that this may be indicative of something else, but I was given little information to what that could be. My doctor told me I needed to have a blood test. When she handed me the order, I immediately stared Googling the different tests she had requested on the order. One of tests requested was for HLAB27. When I Googled what this test meant, I immediately found that it was linked to Ankylosing Spondylitis. I read all of the symptoms and immediately thought that is what I have. This is it. I continued reading about AS and became horrified. I was certain that I matched all of the symptoms listed, but surely this could not be my fate... a fused spine? Lack of mobility? Chronic pain? TNF blockers? I was drowning in my own fear before I was even officially diagnosed... not long after that was the day I received confirmation. As I said, I was in my office at work, and I received a phone call from my doctor's office. My doctor's medical assistant told me that I was HLAB27 positive and that, along with my symptoms, it was consistent with Ankylosing Spondylitis. She said that I needed to follow up with a Rheumatologist and gave me a referral. I thanked her quietly and hung up the phone. Do you know what it feels like when you are so sure you know something to be true, but it still shocks you the moment its confirmed? I closed the door to my office and slid down the back of it... folding up into a ball on floor. I cried, I questioned, I feared, I prayed. I believed in that moment that AS was going to be the worst thing that ever happened to me. I believed AS was going to steal my life.

What I didn't know then was that I was actually getting stronger in that moment. That is the funny thing about strength... it doesn't come without weakness or pain. Strength comes from growing and from battling. It comes from breaking down and then choosing to stand back up. Strength comes slowly and from experience. Finding out that I had AS broke me. I felt like I had been robbed of my future. I was so scared of the unknown that awaited me. My physical pain had become an emotional hell. I was so relieved to have an answer for what my pain was, and yet so distraught to learn what it was that ailed me. But, from pain "we can either make ourselves miserable or we make ourselves strong... the work is the same." I was scared, in pain, and confused... but, my reality wasn't going to change. I could be miserable from my pain, or I could be strong because of my pain. I didn't know if my strength, efforts, or optimism would be enough... but it was all I had in that moment. I felt so much on the floor of my office that day, but the next day was about action. Okay, I have AS. Now what? How will I handle this new life? Because the truth is my life was not stolen... it was changing. Was it possible that I could have any control in how it was it was going to change?

I once read that "a river cuts through rock not because of its power, but because of its persistence." AS is not something you muscle or power through... it takes persistence. Persistence in staying mobile and active. Persistence in remaining optimistic and positive. It requires persistence to keep going even though there are battles ahead. That persistence will build the power that keeps you going, keeps you mobile, and keeps your body from fusing... at least I hope it does.

It is interesting talking to people about AS and my prognosis. Even just tonight I was asked, "What does that mean?" In the simplest form... it means I have an inflammatory arthritis that attacks my spine and the surrounding joints. It means chronic pain and flares. It means varying degrees of symptoms throughout my life time. It means the possibility of my joints fusing and the loss of mobility. It means meeting with a Rheumatologist multiple times a year and blood tests 3-4 times a year. It means anti-inflammatories and possibly TNF blockers one day. It means experimenting with diet, vitamins, herbs, oil, and every other "cure" that people recommend. It means lifestyle changes, stretching, and restless nights. It means fatigue and caution. It means physical therapy and soreness. But it has meant a lot more to me as well... It has meant patience and perseverance. It has meant motivation and a greater awareness of my body. It has meant committing myself to an active lifestyle and becoming involved in active communities. It has meant being grateful for my mobility and dedicated to maintaining it. It has meant taking my weakness and making it my strength.

Finding out I have AS was horrible, but it has led to some of the best things in my life. I practice Iyengar and found a yoga community I love. I hike more, bike more, and enjoy the outdoors more. I challenge myself physically, but also have more understanding and know when my body is telling me to back off. AS has helped me create connections with other people who have this scary and challenging condition. And now? I am motivated not only to better my life with AS, but the lives of others who suffer from it.

In 11 days I will be biking up Pikes Peak with 10 of my best biking buds. We will trek 12.5 miles to the summit and gain just under 5000 feet in elevation before heading back down. I am biking to challenge myself physically and prove my body is capable and strong, despite its weakness. But even more than for myself, I am riding for everyone else that has AS. Especially those who have severe pain and can barely move. Those who struggle to get out of bed and those who cry themselves to sleep. Those who have lost jobs, relationships, and hope... Those experimenting with drugs and suffering from the side effects. Those scared and tired. Those who have fused and those who fear it is coming soon. Those who think mobility, drive, and energy is out of their reach. I am riding for those who feel alone and feel that there is no other way of life with AS. To those people, I am riding for you.

I want you to find strength and believe in yourself. I want you to know that I have AS and I believe more than any diet, any drug, or any supplement... my mobility is saving me. Some days I am too sore, I am too tired, and I feel helpless. And I know that that is when I need movement even more. Strength comes to those who want it. Maybe you won't be biking Pikes Peak any time soon... but strength is what you make it. Yes, you have a weakness. You have a challenge. And I know you have pain. But you have got to keep moving forward. Try water therapy, physical therapy, walking, stretching, yoga, biking... Start somewhere, anywhere, and believe you can... Believe it can be better. Your mindset can change everything. You may be on the floor now, but where will you be tomorrow or three years from now?

So, to my friends, family, supporters, and fellow AS fighters... Please donate to Spondylitis Association of America in support of my ride up Pikes Peak on July 25, 2015 (Donate at www.crowdrise.com/spokesforspondylitis). Lets help SAA fund research of spondylitis diseases and raise awareness in the community. But even more, let's grow in strength. Let's help people believe that their weakness, their pain, and their fear will create their strength and perseverance tomorrow. We may not be able to cure AS, but we can change how people look at it, especially those who battle it everyday. Lets change the face of AS, let's make it STRENGTH!


To better days and strength ahead,

Amanda