So, It’s been a little over a year since my knee surgery (and my last post), for the latter I apologize. It’s not that I wanted to stop communicating my day to day life with RA, it’s more like I’ve been trying to keep up with my younger, stronger knees. Like a tired mother chasing around a rambunctious toddler. You see, my ability and strength is coming back faster than my endurance, leaving me all but drained at the end of the day.
At first I didn’t feel too guilty about this, as I was using this blog more as an outlet. A place to put into words exactly what I was feeling and going through and figured no one’s universe would come crashing down if I didn’t get around to posting. I was being narrow minded and a little selfish. It was brought to my attention recently that this blog doesn’t only have to be an outlet for me, but a resource for others. A way or other patients to relate and know they are not alone, and for people trying to better understand the disease and learn about it. Maybe to bridge the gap a little between those that suffer from RA and those that are confused by it. Even to lend a hand those that fall into both categories. Unlike many of those who have been diagnosed with RA, I’m not afraid to talk about it, to answer questions, or to educate. I have no problem explaining to people who don’t understand the struggles of the disease, exactly what we go through every day, which those that are living with the disease know, it’s no easy task. People don’t understand everything that this delightful ailment comes with. The pain, the fatigue, the inflammation, the medicinal side effects, flare-ups and let downs. But sadly, some people don’t want to know, to learn. They’d much rather go along thinking that’s it’s all in our, the patients head. That we are lazy hypochondriacs, after all, everyone has aches and pains. Everyone gets tired. I’ll be the voice. I’m not ashamed or defeated and trust me, I have a lot to say.
With that being said if anyone out there wants to hear about a specific topic, how I deal with certain circumstances and situations or anything else, leave me a comment and I'll do my best to share my experiences, and what I've learned from my RA over the past 15 years.
Monday, August 8, 2011
Wednesday, June 30, 2010
Absolutely-Ashley
At times, I feel as though my RA shares similarities with the story Alice in Wonderland. Like Alice, I wake up and I wonder, have I been changed in the night? Was I the same when I got up this morning? Sometimes I almost think I can remember feeling a little different. But, if I'm not the same, the next question is 'Who in the world am I?’ That is the great puzzle.
Some days, I wake up and feel that I used to be much more..."muchier." Those are the days that I feel as if I have lost my muchness. That I am Almost-Ashley. Not quite the Ashley that I once was. I feel that Almost-Ashley is falling down a rabbit hole, spiraling out of control, to find herself in a world she cannot explain. A world where nothing seems to make sense. A world where she is told to “eat this”, and “drink that”… only to be surprised with results and side effects that she did not expect. These are the days that Almost-Ashley, almost decides that living in this muddled world is impossible.
On these days, like Alice, I try to believe in as many as six impossible things before breakfast. Count them. One, there is medicine that will relieve my swelling. Two, there is surgery to help my ailments. Three, I recover quickly. Four, symptoms can disappear. Five, there is a place for physical therapy. Six, I can slay the arthritis.
While my six things may not seem impossible to outsiders, peering through my looking glass, people that suffer from RA, or any other chronic condition understand that even such actions as walking, standing or sleeping can seem like impossible tasks. Everyone has their own monsters to slay. Their own symptoms and difficulties. Their own impossibilities. Because of this, every day, I try my hardest to wake up, and remember that things are only impossible if you believe they are impossible.
Every morning when I wake up, I make a conscious decision. I make the decision to either be Almost or Absolutely me. Some mornings the decision is easy, other mornings it is challenging. Some days I wake up and don’t even want to be me at all. No matter what, when I feel like it impossible to get out of bed, I do it. I was told at the onset of my RA it was impossible to competitively ride, one year ago I showed in the World Pinto Show, one of the highest levels of competition on that circuit. After surgery, I was told it was impossible to stand and walk unassisted earlier than the end of July. I was rising and walking by the beginning of June. Things are only impossible if you BELIEVE they are impossible. This is the attitude that separates Almost-Ashley from Absolutely-Ashley. Absolutely-Ashley never lets anyone, including herself, tell her anything is impossible. One step is all it takes to turn the impossible, possible. One step. One step is all it takes to reclaim your muchness.
Some days, I wake up and feel that I used to be much more..."muchier." Those are the days that I feel as if I have lost my muchness. That I am Almost-Ashley. Not quite the Ashley that I once was. I feel that Almost-Ashley is falling down a rabbit hole, spiraling out of control, to find herself in a world she cannot explain. A world where nothing seems to make sense. A world where she is told to “eat this”, and “drink that”… only to be surprised with results and side effects that she did not expect. These are the days that Almost-Ashley, almost decides that living in this muddled world is impossible.
On these days, like Alice, I try to believe in as many as six impossible things before breakfast. Count them. One, there is medicine that will relieve my swelling. Two, there is surgery to help my ailments. Three, I recover quickly. Four, symptoms can disappear. Five, there is a place for physical therapy. Six, I can slay the arthritis.
While my six things may not seem impossible to outsiders, peering through my looking glass, people that suffer from RA, or any other chronic condition understand that even such actions as walking, standing or sleeping can seem like impossible tasks. Everyone has their own monsters to slay. Their own symptoms and difficulties. Their own impossibilities. Because of this, every day, I try my hardest to wake up, and remember that things are only impossible if you believe they are impossible.
Every morning when I wake up, I make a conscious decision. I make the decision to either be Almost or Absolutely me. Some mornings the decision is easy, other mornings it is challenging. Some days I wake up and don’t even want to be me at all. No matter what, when I feel like it impossible to get out of bed, I do it. I was told at the onset of my RA it was impossible to competitively ride, one year ago I showed in the World Pinto Show, one of the highest levels of competition on that circuit. After surgery, I was told it was impossible to stand and walk unassisted earlier than the end of July. I was rising and walking by the beginning of June. Things are only impossible if you BELIEVE they are impossible. This is the attitude that separates Almost-Ashley from Absolutely-Ashley. Absolutely-Ashley never lets anyone, including herself, tell her anything is impossible. One step is all it takes to turn the impossible, possible. One step. One step is all it takes to reclaim your muchness.
Monday, June 28, 2010
The Road to Recovery
So it has been a little over a month since I have given you a glimpse into my everyday life. These past few weeks I have been traveling down the road of recovery, and what a journey it has been.
It wasn't, and still is not an easy path. Having both knees taken out, and new ones cemented into a freshly formed and filed sockets. Having a total of 51 staples holding together two 10 inch incisions that would eventually heal into 10 inch scars. Having those same 51 staples ripped back out one at a time. Being asked the day after your surgery to not only start therapy, but to be expected to walk as well.
I walked. I walked a total of 15 steps that morning. Those may quite possibly have been the 15 most difficult steps I have ever been asked to take in my life. But that's something I don't let just anybody know. To most of the world those 15 steps were the best steps I have ever chosen to take. Those were my first 15 steps toward a new, and promising future. Both renditions of those few seconds on May 26th are correct. They were the most difficult, and liberating steps I had ever taken. As I collapsed back into my chair, I cried. I cried tears forged from pain and from relief. I was going to be able to do this, and from that moment on I knew it was only going to become easier.
Which it did. Within three days, with the help of a walker I was walking to and from therapy. Gradually, my dependence on the walker diminished as my strength and balance came back. Three weeks after my surgery date I was rising and walking unassisted, that is two months earlier than my surgeon and therapists predicted. I often get asked the question how. Attitude.
Attitude truly is everything. I was never a victim and therefore, never acted like one. I didn't feel sorry for myself and wasn't looking for pity. I wanted this. I needed this. I knew no matter how difficult it was, or what my pain level reached, I had lived through worse, and made it, just as would this time. I knew that those times that I had lived through before, I didn't have an answer. I knew I was in pain and every medication and treatment I had tried failed me. I also knew, my pain was getting worse. This time it was different. This time I was getting better, and every time something was difficult I knew it was going to get easier. Every time I pushed through for just a few more steps, or a couple extra reps, it wasn't going to be in vain. I was going to get through this and become stronger. I was going to be able to return to a life that wasn't wheelchair accessible only.
I know my journey is far from over and I still have miles to go. I understand that now that my knees are healing, that doesn't affect the pain or flares in other joints. I have learned that the surgery did not cure the illness or fatigue that plagues me. I realize that rheumatoid arthritis is a monster that I have to battle daily, but at least I am doing battle on two new titanium knees, that for now, seem quite up to the challenge.
Monday, May 24, 2010
Out with the Old in with the New
So today is the last day that I have to spend with my old knees. I feel as if I should have had a going away party or something. Granted I haven't felt quite up to it, but just the same, my knees and I have been through a lot.
As a baby I'm sure that I put some miles on them, crawling around, testing them, learning how to walk. Later, it was hopscotch, skip-it and jump rope. Tree climbing and bike riding. Hiking and swimming, my knees and I did it all and made it through life with only a few scrapes and bruises between us.
At a young age I had also found horses, my passion in life, and my knees were right there with me. Supporting me as I learned how to ride and how to jump. Picking me up when I lost contact with my saddle, and made contact with the ground. My knees and I were a team.
Then something happened. We started to grow apart. At first it was little things, like running and dancing. Then, my knees no longer wanted to take the impact that came with high level equestrian jumping competition. After a while,they resisted even small tasks such as walking, standing and climbing stairs. They had completely forsaken me, leaving me to spend my days in bed or experiencing life outside of my apartment, from a wheelchair, looking up at my world around me. Looking up at a world that I was so used to surveying from the back of a horse, or the limb of a tree. My knees and I had reached a cross road.
It was an easy decision. The decision to replace my old knees with new metal and plastic ones. I feel it was like the decision a major league coach makes when he pulls from the bull pen. He knows the man standing on that mound is done and worn out, even injured, but the game still needs to be won. So he brings in the relief pitcher, and with this new, refreshed pitcher, the promise of the chance to win the game.
So here I stand on my pitching mound ready, ready for relief, ready for promise, and ready to turn this game around.
As a baby I'm sure that I put some miles on them, crawling around, testing them, learning how to walk. Later, it was hopscotch, skip-it and jump rope. Tree climbing and bike riding. Hiking and swimming, my knees and I did it all and made it through life with only a few scrapes and bruises between us.
At a young age I had also found horses, my passion in life, and my knees were right there with me. Supporting me as I learned how to ride and how to jump. Picking me up when I lost contact with my saddle, and made contact with the ground. My knees and I were a team.
Then something happened. We started to grow apart. At first it was little things, like running and dancing. Then, my knees no longer wanted to take the impact that came with high level equestrian jumping competition. After a while,they resisted even small tasks such as walking, standing and climbing stairs. They had completely forsaken me, leaving me to spend my days in bed or experiencing life outside of my apartment, from a wheelchair, looking up at my world around me. Looking up at a world that I was so used to surveying from the back of a horse, or the limb of a tree. My knees and I had reached a cross road.
It was an easy decision. The decision to replace my old knees with new metal and plastic ones. I feel it was like the decision a major league coach makes when he pulls from the bull pen. He knows the man standing on that mound is done and worn out, even injured, but the game still needs to be won. So he brings in the relief pitcher, and with this new, refreshed pitcher, the promise of the chance to win the game.
So here I stand on my pitching mound ready, ready for relief, ready for promise, and ready to turn this game around.
Friday, May 21, 2010
Fun Buckets vs. DMARD's
Happy Birthday!!! Was the over exuberant shout I heard at 6:15 am on the other end of my phone. I swear I can not wait until my brother is in collage so I can get him back for all of the early morning phone calls.
Over all as I laid in bed, thinking about how to spend my birthday day and felt decent. Well rested for a change but still had a slightly "hungover" feeling. A year ago I could tell you what that hangover feeling came from. It came from 3 Fun Buckets. Fun Buckets are one of my favorite beach bars specialty. They take a sand pail and fill it with chopped fruit, tropical juices and add whole lot of rum. The hangover a year ago was also helped along by numerous shooters and a general lack of proper hydration. It was my Quarter Century Celebration after all.
The hangover this year is slightly different. I spent last night sipping on ginger ale and fighting to keep down soup. The hangover this year was induced by my daily shot of NSAIDs,DMARD's and prednisone. You see, every day I wake up, my boyfriend hands me a shotglass full of 7 pills and I start my day. Thursdays. Ohhh Thursdays are a joy. Thursdays I get to down 8 additional pills. Those 8 tiny salmon colored pills are methotrexate.
To put it in perspective methotrexate is comparable to chemotherapy that you take orally. Same immune response, same lovely side effects. Nausea, dizziness, headache, light sensitivity, fatigue, light headedness... its wonderful. Truly one of the joys in life. Unfortunately this hangover can not be cured with a Bloody Mary, a pair of big sunglasses and a greasy cheeseburger and while most hangovers can be slept off, this hangover lasts for about three days.
I miss Fun Buckets.
Over all as I laid in bed, thinking about how to spend my birthday day and felt decent. Well rested for a change but still had a slightly "hungover" feeling. A year ago I could tell you what that hangover feeling came from. It came from 3 Fun Buckets. Fun Buckets are one of my favorite beach bars specialty. They take a sand pail and fill it with chopped fruit, tropical juices and add whole lot of rum. The hangover a year ago was also helped along by numerous shooters and a general lack of proper hydration. It was my Quarter Century Celebration after all.
The hangover this year is slightly different. I spent last night sipping on ginger ale and fighting to keep down soup. The hangover this year was induced by my daily shot of NSAIDs,DMARD's and prednisone. You see, every day I wake up, my boyfriend hands me a shotglass full of 7 pills and I start my day. Thursdays. Ohhh Thursdays are a joy. Thursdays I get to down 8 additional pills. Those 8 tiny salmon colored pills are methotrexate.
To put it in perspective methotrexate is comparable to chemotherapy that you take orally. Same immune response, same lovely side effects. Nausea, dizziness, headache, light sensitivity, fatigue, light headedness... its wonderful. Truly one of the joys in life. Unfortunately this hangover can not be cured with a Bloody Mary, a pair of big sunglasses and a greasy cheeseburger and while most hangovers can be slept off, this hangover lasts for about three days.
I miss Fun Buckets.
Thursday, May 20, 2010
A Brief (not really) Overview
Hello everyone! My name is Ashley and as of tomorrow I will be 26. My passion in life is horses. I have been a competitive rider from a young age and everything about my life, somehow relates back to my riding. If I am not on a horse, I am around them, and if I am not around them, I'm thinking about them. I do have other interests, interests that I fit in between saddle time. I try my hand at photography and sketching. When I am not riding the trails I do not mind a good hike,especially if I can get in some geocaching. I want to see and experience the world, one thing that can pry me away from the barn is any ofer to travel. I love the beach and the mountains. I have the most amazing friends, a loving boyfriend and a strong relationship with my two younger brothers. I am active. I also have Rheumatoid Arthritis.
I was diagnosed with this disease when I was 12 and in eighth grade, as if high school wasn't going to be tough enough. I am a facebook user and most of my posts are fun, upbeat and undeniably quirky, with just a little bit of attitude mixed in... but I have another side.
A side I almost always keep to myself. The side of me that is in pain, the side of me that cries, the side of me that I try my hardest everyday to overcome as to be able to live just one more day without this disease defeating me. This is what I will be writing about on RAUnbridled. My day to day struggles and triumphs. I will use this forum as an outlet to help me get through the days that last the longest and share the moments that make the struggle worth it.
So what got me to this point...
About six months ago my RA took a turn for the worse, not just a nice little bend in the road, it was more akin to the engines stalling on an airplane, and I, the pilot, was left plummeting, free falling without the resources to avoid the crash.
Both of my knees had given out. I was left unable to work, unable to walk, and most tragically, unable to ride. I found myself, this girl that wanted to be able to see and do everything all at once, to revel in the world around her, bound to her full sized bed or confined to a wheelchair. I found that in spite of my pride and independence, I was utterly reliant on those around me. Seeing that my then current rheumatologist was proving to be useless, pumping me full of prednisone and failing to take x-rays, I sought treatment elsewhere.
After a few visits, four cortisone injections and a full set of x-rays, my new rheumatoligist sent me to an orthopedic specialist to discuss knee replacements. The orthopedist took a single look at my films, turned to me and asked when was the last time I was able to stand and walk. I informed him I could still walk, although very uncomfortably, a short distance. He was surprised I was able to stand and bare full weight during the past year and a half. All of the cartilage in both knees was completely gone, and the bones that had been grinding on one another were exceedingly eroded away . Needless to say, I was a candidate for a full double knee replacement.
My surgery is scheduled for this upcoming Tuesday (new knees for my birthday...woo hoo!!). Followed by weeks of rehab and physical therapy. This is going to be a tough ride, but that is something I am used to, and will hopefully be just a stepping stone in my unbridled journey.
I was diagnosed with this disease when I was 12 and in eighth grade, as if high school wasn't going to be tough enough. I am a facebook user and most of my posts are fun, upbeat and undeniably quirky, with just a little bit of attitude mixed in... but I have another side.
A side I almost always keep to myself. The side of me that is in pain, the side of me that cries, the side of me that I try my hardest everyday to overcome as to be able to live just one more day without this disease defeating me. This is what I will be writing about on RAUnbridled. My day to day struggles and triumphs. I will use this forum as an outlet to help me get through the days that last the longest and share the moments that make the struggle worth it.
So what got me to this point...
About six months ago my RA took a turn for the worse, not just a nice little bend in the road, it was more akin to the engines stalling on an airplane, and I, the pilot, was left plummeting, free falling without the resources to avoid the crash.
Both of my knees had given out. I was left unable to work, unable to walk, and most tragically, unable to ride. I found myself, this girl that wanted to be able to see and do everything all at once, to revel in the world around her, bound to her full sized bed or confined to a wheelchair. I found that in spite of my pride and independence, I was utterly reliant on those around me. Seeing that my then current rheumatologist was proving to be useless, pumping me full of prednisone and failing to take x-rays, I sought treatment elsewhere.
After a few visits, four cortisone injections and a full set of x-rays, my new rheumatoligist sent me to an orthopedic specialist to discuss knee replacements. The orthopedist took a single look at my films, turned to me and asked when was the last time I was able to stand and walk. I informed him I could still walk, although very uncomfortably, a short distance. He was surprised I was able to stand and bare full weight during the past year and a half. All of the cartilage in both knees was completely gone, and the bones that had been grinding on one another were exceedingly eroded away . Needless to say, I was a candidate for a full double knee replacement.
My surgery is scheduled for this upcoming Tuesday (new knees for my birthday...woo hoo!!). Followed by weeks of rehab and physical therapy. This is going to be a tough ride, but that is something I am used to, and will hopefully be just a stepping stone in my unbridled journey.
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