This has been one of the hardest years in my life. Personally, I like to listen to music when I feel lost, overwhelmed, and need some clarity. I have been listening to this one a lot lately...
"Comes And Goes (In Waves)"
This one's for the lonely, the one's that seek and find
Only to be let down time after time
This one's for the torn down, the experts at the fall
Come on friends get up now you're not alone at all
..... It comes and goes in waves
It all does come and go in waves. I have been lost in a strong tide of these waves for some time now. Waves of pain. Waves of strength. Waves of so much vulnerability. Waves of fear. Waves of depression. Waves of anxiety. Waves of happiness and of clarity. Waves of sadness. Waves of optimism. Wave after wave, and none of them the same. This tide has been drowning me. Stealing every last bit of my energy, strength, and perseverance.
This blog was, and is, supposed to be an outlet for me dealing with the emotional, physical, and mental challenges that come with being a person living with AS. However, I guess I looked at it in a limiting way... For example, how my AS would affect my life, and not how my life would affect my AS.
My emotional tides crash into my AS like a hurricane. With each new stress and each new conflict, I can feel the impact. So much of one's physical condition depends on their emotional and mental well being... you can imagine how this might be amplified with having an auto-immune condition. I'm so aware of my condition these days.... It's like I have a boat with weak keel ( a lengthwise piece which the frames are fixed...also known as the "backbone" of the boat--- See what I did there ;) ) and I am watching wave after wave take its toll.
Every day I feel my spine in a way I am sure I couldn't have before, but I don't remember... I don't remember what it feels like to not have soreness, tenderness, and tightness up and down my spine. Being active, I often wonder what "normal" 26 year old men and women feel in their spine... Is it similar? Not at all? Somewhere in between? I know that at my worst, in a flare, it probably isn't very comparable... but what about every day life? I guess I will never know. What I do know, is that the emotional waves of being a 20 something, dealing what life is throwing me is a very normal thing. I just need to figure out how to own my emotions and my body again so I may better weather the storm.
This one's for the faithless, the ones that are surprised
They're only where they are now regardless of their fight
This one's for believing if only for it's sake
Come on friends get up now love is to be made....
It comes and goes in waves, I
Am only led to wonder why
It comes in goes in waves, I
Am only led to wonder why
Why I, why I try
I have debated long and hard about what to say in this blog and how open I wanted to be. Ultimately, I have decided that there is something therapeutic in being honest with yourself and owning where you are in life... So, here is the source of many of my waves...
In the last year, my marriage has fallen apart. It officially ended this fall. It has been one of the most exhausting and excruciating things I have ever gone through. I don't wish to go into much detail about it or answer questions... All I can say is that it wasn't right anymore and we weren't either. I have no ill will towards him and I am learning to take steps in a new life on my own. This has been the hardest way to personally grow and the emotions have been overwhelming. Through the rough patches and ultimately the end of my marriage, my AS reminded me that I had to take care of myself and work with my body. I have learned about taking care of myself and slowing down in emotional turmoil, but it has not been an easy lesson.
In August, my sweet aunt passed away. It was very unexpected and hard for my family. She also had an auto-immune disease called Crohn's. My aunt had a hard battle with her symptoms and her daily life was greatly affected. Her spirit was great though, and her energy contagious. I felt so lost in emotions with questions and confusion and anger. How could this happen? Why did it happen? I would take walks by myself and cry. I, like the rest of my family, felt so lost. She made a remarkable impact on people in her life. I will never forget dancing the night away with her and my cousin or the talks we shared just two short months before she died. She reminded me how much opportunity there was for life. It is very hard losing a family member, but I also lost the only other person in my family with an auto immune disease or condition. There was something deeper that we understood about each other and what challenges there were. She personally reached out to me when I was diagnosed and made a point to tell me she was there for support. All I know is that her connection with my mother and cousin was so strong, and her support of me so loyal... I try to channel that energy into a positive outlook in living with AS and not against it.
And finally, last month I found out that my dad has stage 4 throat cancer. There are no words for how scared and desperate I felt with this news. My dad was my hero growing up. He never panicked and always figured out how to go after a problem rather than worry about it. He is doing the same now. I have been home with him, helping him get through the awful throws of chemo and its toll on the body. I can feel myself tense up when I feel out of control and helpless. I feel my aching pain grow into a mild pierce of pain. I feel myself building. My dad was my soccer coach, my story teller, and my confidant growing up. He is still my story teller, my innovator, my personal musician, my inspiration, my carefree spirit, and my strength. Through everything he has remained optimistic and calm. I wish I had that energy. His recovery rate is high, luckily, so we are all hopeful. I need my dad in my life, so much. There is so much more for us to do together.
I have spent many nights crying over one event or another, or sometimes at a random movie. All of these events have impacted my life in such a way, that it is hard for me to make sense of what wave will rock my boat and which one will capsize it. I am trying to harness both my emotional and physical well being again. It has been hard. Many days I have wanted to keep busy and my mind off of these events, my emotions, and where I am now. Being so emotional, that doesn't get me anywhere though. I am still just sitting in the middle of the ocean waiting for the next big storm to hit.
Somehow, I need to move forward. I need to know how to emotionally grow and physically maintain. I let myself cry when it comes, and I let myself laugh when it comes. I make jokes when I can, and run when it gets to be too much. I try not to be idle, but also set aside time to think, process, and work on peace. I acknowledge my body and its pain. I try to understand the connection between my emotional waves and its wear and tear so I may be better equipped in the future.
This is for the ones who stand
For the ones who try again
For the ones who need a hand
For the ones who think they can
It comes and goes in waves, I
Am only led to wonder why
It comes and goes in waves, I
Am only led to wonder why
Why I, why, why I fly
I am in the middle of the ocean. Surrounded by ongoing waves of emotions and pain. But I am not getting anywhere by trying to pretend I am not here or that none of this happened to me. It's time to start learning to ride the surf rather than drown in it. I want to be stronger. I want to move on. I want to do what needs to be done next, for me and my family. And if I can't surf quite yet, perhaps I can at least start to paddle out of this bad patch of sea.
Thanks all,
XOXO Amanda
Monday, November 17, 2014
Friday, June 6, 2014
Who needs an immune system?
I think I had an immune system at one point... but I am not sure where I placed it. Have you seen it? I think I left it somewhere... possibly with my strength and well being. On that note, if you find either one of those, I would greatly appreciate their safe return.
Hmmm.... a description? Yeah, I can describe it. I kept it safe in my body for some time. It helped me ward of the evils of the world... disease, infections, viruses... It was my shield. It protected me from the evils that tried to attack and invade my body. I fed it well and did my best to take care of it...
You want the truth? I think it ran away... Well, first... it became compromised. Not because of anything I did directly, but because sometimes these things happen naturally and we have no control over it. It was something bigger than me... it was genetics. Anyways, that hurt my immune system. It made it abnormal, and tested its strength and ability. My poor immune system got confused and didn't know what it should be fighting anymore. It started attacking good tissue in my body. Luckily, I have been able to help it calm down and not be so hard on my poor tissue that runs through my back and hips. But, recently I think it became suppressed due to stress. It fell into a dark hole and didn't want to fight any more. It wanted to lay there and sleep; curl up and be left alone. It wanted to not fight anymore and just let everything pass, no matter the damage.
During this suppression, I have been sick multiple times, developed scars from simple scratches, multiple bruises, cold sores, viruses, etc. I have spent so much time and money at doctors trying to get my immune system to "respond." I have been told numerous times that it is pretty much non-existent at this time. So, God forbid, someone sneeze around me, cough, not wash their hands, have the stomach flu... I feel like I should be the Bubble Boy. My doctor keeps asking me if I am dealing with anything creating high stress in my life... Ha. I wonder what would make him think that.
I miss my immune system. Hell, I miss my energy and my strength. I miss my motivation and my desire to take on the world. I feel like a slug most days. In some moments, I feel my immune system creeping out of its deep, dark hiding spot... but immediately, my back and hips begin to ache. My hips fall out of alignment and my back muscles release. this causes more stress on its own, and well back into the hole we go.
I am in a cycle of stress, depression, aching, and discouragement. I have a lot going on in my personal life and it is affecting me physically. I feel like I barely know my own body anymore. I may not be having full blown flares or pain the way I was when I was diagnosed or in the past, but I feel that I am losing my health in so many other areas. I am wearing down, stiffening up, falling into illnesses, picking up the pieces, and starting a cycle all over again.
I try to remind myself that I am strong and that I can do this... I can help show my immune system the way home. I can bring it back and still keep my AS under control. I tell myself this multiple times a day just in hopes there is any chance that I might believe it.... that I might make it true.
I am being worn down physically, mentally, and emotionally due to the cycle of events and stress in my life these days. I won't go into too much detail as they are matters close to my heart, but its been one of the hardest times in my life. I am doing my best to maintain my health, build my immune system, and remain positive. I have begun a starch free diet again. I am hoping that might help things along. I am trying to be more aware of my body, what it needs, and what it is trying to tell me. The challenges of life are never easy, and having an auto immune disease makes them that much harder to deal with and get through. We each have our own battles and no matter how big or how small... we are all fighting something. What we all really need is compassion and patience from each other, no matter the circumstances. Some people are fighting battles you know nothing about.
So, for the past few months... I have been dealing with a lot personally and emotionally, and it has definitely affected me physically. I am aware of that, and well its the first step to changing things for the better. I am hoping that my immune system will return home soon and help me to protect my physical body while my heart and mind try to figure out the rest.
Thanks for your love and support.
Amanda
Hmmm.... a description? Yeah, I can describe it. I kept it safe in my body for some time. It helped me ward of the evils of the world... disease, infections, viruses... It was my shield. It protected me from the evils that tried to attack and invade my body. I fed it well and did my best to take care of it...
You want the truth? I think it ran away... Well, first... it became compromised. Not because of anything I did directly, but because sometimes these things happen naturally and we have no control over it. It was something bigger than me... it was genetics. Anyways, that hurt my immune system. It made it abnormal, and tested its strength and ability. My poor immune system got confused and didn't know what it should be fighting anymore. It started attacking good tissue in my body. Luckily, I have been able to help it calm down and not be so hard on my poor tissue that runs through my back and hips. But, recently I think it became suppressed due to stress. It fell into a dark hole and didn't want to fight any more. It wanted to lay there and sleep; curl up and be left alone. It wanted to not fight anymore and just let everything pass, no matter the damage.
During this suppression, I have been sick multiple times, developed scars from simple scratches, multiple bruises, cold sores, viruses, etc. I have spent so much time and money at doctors trying to get my immune system to "respond." I have been told numerous times that it is pretty much non-existent at this time. So, God forbid, someone sneeze around me, cough, not wash their hands, have the stomach flu... I feel like I should be the Bubble Boy. My doctor keeps asking me if I am dealing with anything creating high stress in my life... Ha. I wonder what would make him think that.
I miss my immune system. Hell, I miss my energy and my strength. I miss my motivation and my desire to take on the world. I feel like a slug most days. In some moments, I feel my immune system creeping out of its deep, dark hiding spot... but immediately, my back and hips begin to ache. My hips fall out of alignment and my back muscles release. this causes more stress on its own, and well back into the hole we go.
I am in a cycle of stress, depression, aching, and discouragement. I have a lot going on in my personal life and it is affecting me physically. I feel like I barely know my own body anymore. I may not be having full blown flares or pain the way I was when I was diagnosed or in the past, but I feel that I am losing my health in so many other areas. I am wearing down, stiffening up, falling into illnesses, picking up the pieces, and starting a cycle all over again.
I try to remind myself that I am strong and that I can do this... I can help show my immune system the way home. I can bring it back and still keep my AS under control. I tell myself this multiple times a day just in hopes there is any chance that I might believe it.... that I might make it true.
I am being worn down physically, mentally, and emotionally due to the cycle of events and stress in my life these days. I won't go into too much detail as they are matters close to my heart, but its been one of the hardest times in my life. I am doing my best to maintain my health, build my immune system, and remain positive. I have begun a starch free diet again. I am hoping that might help things along. I am trying to be more aware of my body, what it needs, and what it is trying to tell me. The challenges of life are never easy, and having an auto immune disease makes them that much harder to deal with and get through. We each have our own battles and no matter how big or how small... we are all fighting something. What we all really need is compassion and patience from each other, no matter the circumstances. Some people are fighting battles you know nothing about.
So, for the past few months... I have been dealing with a lot personally and emotionally, and it has definitely affected me physically. I am aware of that, and well its the first step to changing things for the better. I am hoping that my immune system will return home soon and help me to protect my physical body while my heart and mind try to figure out the rest.
Thanks for your love and support.
Amanda
Thursday, January 9, 2014
Stressing Out and Breaking Down
Stress.
Hello… You old Jerk. I thought I was doing a pretty good job of telling you to "Back the @%#$ up" and "Stay out of my life…" But, alas, here we are. We meet again. I knew you would be back… but, man, what a vengeance. You have it out for me this time. Way to take the good things that I hold onto and challenge them completely. Way to take my outlets and make them useless. You know what, just talking about you, helps you thrive in my life. Ugh, I need some mad meditation or something…
Okay, so meditation. I got this. I am into yoga. I have had some amazingly deep meditative states at the end of my practice. I didn't think deep meditation was possible for crazy thinkers and controllers like me, but I have before… Yep, I can do this. Close your eyes, breathe… Deep breath. Where is your breath, Amanda? Hello? Oh, crap. You are holding your breath. YOU CAN'T BREATHE. BREATHE!!! *Whooooosh* What the hell did you do that for? Are you trying to kill yourself? Why is your breath so shallow… and jumpy? Dear, Lord. Is this why you were holding your breath? You can control it… In and out. It's simple. This is simple. *In, in, shake, shake… Out, out, shake, shake…* Why are you shaking. Get this under control! Okay, try holding your breath and see if that helps. Why aren't you breathing?! BREATHE!
Okay, breathing is finally stabilizing. Good. We are there. Wait, are you crying? Are there tears rolling down your face? Yes, there are. Well, there goes the breathing. Okay, I surrender. We obviously need to feel this. Please, just curl up in a ball. We will cry together. I, your mind, will cry with you. However, I should make it know that I don't understand you, Heart. You are making no sense right now… and you won't let me help you… But, I hurt too now. I hurt because you hurt, and you won't talk to me. I will cry with you and we will try again later. Let's just hope the rest of the body doesn't know we are breaking down…
If only I was that lucky. Sadly, this dance between my brain and my heart has been happening for some time now. This is not the time, place, or method that I would like to get into my personal life or challenges… but, for the purposes of this post… all you need to know is that shit has been really tough over the last couple months. I am in a very stressful, trying, and emotional time in my life. I wanted to do everything I could to keep the AS at bay, but my a breakdown has a way of coursing through all your veins and straight into your weaknesses.
Needless to say, my diet went out the window. When you are breaking down… there is something so intoxicating about cookies, french fries… and bad food in general. If you are eating, that is. Its like being at the extreme end of a scale, isn't it? You are either stuffing your face with every toxic, delicious, sugary, bread, horrible thing in sight…. or you can't even look at a piece of food without wanting to spill your guts, stomach acid, and whatever food is left in your system. I have gone back and forth on this extreme scale the last couple months. I am either eating every piece of crap food in sight, or I am not eating at all.
Anyways, my immune system has been all over the place. I have missed workouts, yoga, peaceful and mindful meditation… My hormones have been all over the place… and it was all a ticking bomb. I knew it was coming. I could hear the ticks… but I tried to remain positive. When I have had energy, I did something for me. Maybe yoga. Maybe a bath. Maybe just a laugh. But, last week… my body heard this ongoing crying between my heart and my head and it surrendered. I had a flare.
Oh, AS flare. How you pain me so. Physically, mentally, and emotionally. It has been the last straw on this journey through hell. Luckily, some yoga, some relaxing, some pain meds… and I seem to be coming out of this one on top. It didn't get as severe as a couple ones in the past, and I didn't have to do anything to drastic to get back to an okay place. I am in pain or have pretty severe aches everyday right now though :( Manageable, but annoying and hard. Frustrating. Uncomfortable. Sometimes, I just want to scream… "I WISH MY BODY WOULD ACT IT'S AGE!!!"
I do, sometimes, wonder what other 25 year olds feel. What their aches and soreness are like… If they have any. I mean, if you are active, or sitting at a desk all day, or maybe lifting heavy objects… I am sure you are. But, I wonder how deep that pain goes and what "normal" is. This disease can be so draining, so debilitating, and so so so painful sometimes. I know that the stress doesn't help, and I have my moments of strength, but to be honest with you… my friends, family, readers, and supporters… I am going through a rough time and I am fighting the odds with this disease and continual flares. This is the first day where I felt I could humor the idea or writing to express myself, my frustrations, and the battles of AS and stress.
Stress, hard times, struggles, low periods… whatever you call them, and however long they last…they are challenging. They are the periods we have to fight to get through and challenge our thinking on. They sometimes make no sense at all. You have no reason to feel a certain way, but then again… every reason in the world. We all have them, we all go through them. In different ways, and for different reasons. But not only do I have to find my head and my heart's communication line through a rough time, but I also have to battle the stronger and uglier head of this disease. It sees the weakness in my emotions and wants to attack. I am vulnerable. However, at my very core… I am an optimist. I am a survivor. I know that I will be okay, I just don't always know how or when I will get there. So, this is what I am dealing with. This is where I am at in my journey. And to all of you reading, I could use your positive vibes, well wishes, and thoughts. Thank you.
Love to you all,
Amanda
Hello… You old Jerk. I thought I was doing a pretty good job of telling you to "Back the @%#$ up" and "Stay out of my life…" But, alas, here we are. We meet again. I knew you would be back… but, man, what a vengeance. You have it out for me this time. Way to take the good things that I hold onto and challenge them completely. Way to take my outlets and make them useless. You know what, just talking about you, helps you thrive in my life. Ugh, I need some mad meditation or something…
Okay, so meditation. I got this. I am into yoga. I have had some amazingly deep meditative states at the end of my practice. I didn't think deep meditation was possible for crazy thinkers and controllers like me, but I have before… Yep, I can do this. Close your eyes, breathe… Deep breath. Where is your breath, Amanda? Hello? Oh, crap. You are holding your breath. YOU CAN'T BREATHE. BREATHE!!! *Whooooosh* What the hell did you do that for? Are you trying to kill yourself? Why is your breath so shallow… and jumpy? Dear, Lord. Is this why you were holding your breath? You can control it… In and out. It's simple. This is simple. *In, in, shake, shake… Out, out, shake, shake…* Why are you shaking. Get this under control! Okay, try holding your breath and see if that helps. Why aren't you breathing?! BREATHE!
Okay, breathing is finally stabilizing. Good. We are there. Wait, are you crying? Are there tears rolling down your face? Yes, there are. Well, there goes the breathing. Okay, I surrender. We obviously need to feel this. Please, just curl up in a ball. We will cry together. I, your mind, will cry with you. However, I should make it know that I don't understand you, Heart. You are making no sense right now… and you won't let me help you… But, I hurt too now. I hurt because you hurt, and you won't talk to me. I will cry with you and we will try again later. Let's just hope the rest of the body doesn't know we are breaking down…
If only I was that lucky. Sadly, this dance between my brain and my heart has been happening for some time now. This is not the time, place, or method that I would like to get into my personal life or challenges… but, for the purposes of this post… all you need to know is that shit has been really tough over the last couple months. I am in a very stressful, trying, and emotional time in my life. I wanted to do everything I could to keep the AS at bay, but my a breakdown has a way of coursing through all your veins and straight into your weaknesses.
Needless to say, my diet went out the window. When you are breaking down… there is something so intoxicating about cookies, french fries… and bad food in general. If you are eating, that is. Its like being at the extreme end of a scale, isn't it? You are either stuffing your face with every toxic, delicious, sugary, bread, horrible thing in sight…. or you can't even look at a piece of food without wanting to spill your guts, stomach acid, and whatever food is left in your system. I have gone back and forth on this extreme scale the last couple months. I am either eating every piece of crap food in sight, or I am not eating at all.
Anyways, my immune system has been all over the place. I have missed workouts, yoga, peaceful and mindful meditation… My hormones have been all over the place… and it was all a ticking bomb. I knew it was coming. I could hear the ticks… but I tried to remain positive. When I have had energy, I did something for me. Maybe yoga. Maybe a bath. Maybe just a laugh. But, last week… my body heard this ongoing crying between my heart and my head and it surrendered. I had a flare.
Oh, AS flare. How you pain me so. Physically, mentally, and emotionally. It has been the last straw on this journey through hell. Luckily, some yoga, some relaxing, some pain meds… and I seem to be coming out of this one on top. It didn't get as severe as a couple ones in the past, and I didn't have to do anything to drastic to get back to an okay place. I am in pain or have pretty severe aches everyday right now though :( Manageable, but annoying and hard. Frustrating. Uncomfortable. Sometimes, I just want to scream… "I WISH MY BODY WOULD ACT IT'S AGE!!!"
I do, sometimes, wonder what other 25 year olds feel. What their aches and soreness are like… If they have any. I mean, if you are active, or sitting at a desk all day, or maybe lifting heavy objects… I am sure you are. But, I wonder how deep that pain goes and what "normal" is. This disease can be so draining, so debilitating, and so so so painful sometimes. I know that the stress doesn't help, and I have my moments of strength, but to be honest with you… my friends, family, readers, and supporters… I am going through a rough time and I am fighting the odds with this disease and continual flares. This is the first day where I felt I could humor the idea or writing to express myself, my frustrations, and the battles of AS and stress.
Stress, hard times, struggles, low periods… whatever you call them, and however long they last…they are challenging. They are the periods we have to fight to get through and challenge our thinking on. They sometimes make no sense at all. You have no reason to feel a certain way, but then again… every reason in the world. We all have them, we all go through them. In different ways, and for different reasons. But not only do I have to find my head and my heart's communication line through a rough time, but I also have to battle the stronger and uglier head of this disease. It sees the weakness in my emotions and wants to attack. I am vulnerable. However, at my very core… I am an optimist. I am a survivor. I know that I will be okay, I just don't always know how or when I will get there. So, this is what I am dealing with. This is where I am at in my journey. And to all of you reading, I could use your positive vibes, well wishes, and thoughts. Thank you.
Love to you all,
Amanda
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