I have to admit that I have had my struggles dealing with what is happening to my body. I have went through the 'Whoa is Me', 'Why Me?' and 'It's not Fair!' phases these past couple of years. But that hasn't helped me any or changed the facts. I have had to realize that sometimes, Bad Things Happen to Good People.
I haven't done anything to deserve this, as I'm sure most people suffering chronic, debilitating diseases haven't done anything to deserve it either. It is what it is ... period. Now comes the fork in the road ... find a way to deal with it and make the most of everyday, or crawl under a rock and waste time feeling sorry for yourself. You only live this one life, so why waste it hiding from the world feeling sorry for yourself?
I make a choice everyday to laugh as much as possible. I try to find the joy in every day things, even if it's only getting one load of laundry done. To me, yes, that is now a joy and not a chore. Just being able to get up to do it gives me joy. To me that's a good day and gives me some sense of accomplishment. Although going to the grocery store requires a lot of planning and assistance I find joy in getting out and just going. Yeah, I'm exhausted when I get home and have to depend on my family to take care of a lot things I used to do for them, but find great joy that I have them here to love and support me. I find joy in the laughter of my children and my grandchild. I find joy in the love in my husband's eyes for me. I look for and find joy every chance I get.
Life is too short as it is and this disease may make it even shorter than I'd like ... so I don't want to waste a single minute!! Bad Things Happen to Good People every day ... but that doesn't have to define who you are!! I am not RA, I just happen to have RA. I take each day one at a time and cherish each and every one of them!! Each day I wake up is a good one and I make the conscience choice to make it the best one yet!!
So, if not for yourself, for your family and friends TRY to make every day a joy. Even if it's only a single moment out of your day, finding joy will make a huge difference in how you deal with what is going with you and your body. Learning to adapt and try new things in new ways is crucial. If you have RA, as I do, you know there is no going back. Things aren't going to be the way they used to be, but that's okay. It's a constant learning process and, yeah, I've had to buy little tools to help me with some every day things ... but that's okay.
I'm still me. That for sure is never going to change!! I may need to use my wheelchair for activities where a lot of walking is involved, but that's okay. I may need to use an electric toothbrush because my wrists and hands are too weak to brush my teeth, but that's okay. I might need help getting the lids off of everything, but that's okay. I may have to ask someone for help, but that's okay. Just because physically my body is changing doesn't mean I should allow my personality or my mind set to fall apart too!! Bad Things Happen to Good People, like me, but that's okay!! My life goes on, only in a different way than it used to be. I'm okay with that and look forward to each and every day I am alive and for the joy I can find!!!
Sunday, November 7, 2010
Tuesday, October 19, 2010
It's all a state of mind ...
Well, it has been brought to my attention that the majority of my blogging has been so full of negativity. I have to admit that I have done my blogging at some of my darkest and most depressive states of mind. I do this to help get it off my chest so that it doesn't boil up into something darker than what it already is.
I want everyone to know that not all my days are dark and sad like that. I do actually have a great life full of joy, love and support. Those of you who know me really well know that I am a fighter. I refuse to let RA beat my spirit down and steal the joy and great moments from me!!
I have decided to blog both when I'm happy and also when I'm down. There are two sides to every story, including the story of my life Living with RA. Yes, there are those days when the pain and fatigue are overwhelming and, quite frankly, I am angry and depressed about it. But there are also those days when the tiniest and most simple things just fill my heart with the greatest joy!!
Learning to accept this disease and what it is doing to my body has been one of the greatest challenges I think I have ever had to face. On that note though, accepting it does not mean giving in to it!! I have every intention of fighting back with everything I have in me!! I have goals in life that I have yet to achieve ... I just have realized it will take a little longer and maybe even some ingenious creativity on my end to achieve them.
I still want to further my education. I think I might go into photography!! I don't really know if I can turn that into a career or not ... but I know I love it and can have fun and get a lot of joy out of taking pictures!! That is all that really matters in the long run ... what I can find to do that can help me feel productive and happy!!
I still want to travel ... that is going to be more of a financial goal to help me achieve that one ... time to start saving my extra pennies!!! I want to go on a cruise through the Caribbean hitting all those tiny little islands. I want to go to Rio!!! I want to go to Germany and visit all the castles there!!! Yep!! I really better get serious about saving all those extra pennies, nickels and dimes!!!
I want to be as active as I can be in my youngest daughters activities and with my grand baby as well!! I want them to know that I am one tough bird who has a passion for life!! I want them to see and learn from my 'I CAN' attitude!! Even on my worst days I want to interact with them with a gleam in my eye, a smile on my face and show them that life is wonderful!!!
Yes, life can and will throw you some curve balls ... it's in how you strike back at it that counts!! You can either cringe and let it hit you hard or you can come out swinging and hit it hard!! I choose to come out swinging and hitting it hard into the bleachers (giving me enough time to hobble through all the bases until I come back around to home plate)!!!
My point is this ... I refuse to let RA victimize me and only show the negative side!! I do still have a life, even through all the pain. I might not get around as well as I use to, my body might be changing but my spirit, my very essence is still the same!! I am a fighter, a survivor and a great person who loves life, fun, love and happiness!!
{Pain Free Hugs} ~ K
I want everyone to know that not all my days are dark and sad like that. I do actually have a great life full of joy, love and support. Those of you who know me really well know that I am a fighter. I refuse to let RA beat my spirit down and steal the joy and great moments from me!!
I have decided to blog both when I'm happy and also when I'm down. There are two sides to every story, including the story of my life Living with RA. Yes, there are those days when the pain and fatigue are overwhelming and, quite frankly, I am angry and depressed about it. But there are also those days when the tiniest and most simple things just fill my heart with the greatest joy!!
Learning to accept this disease and what it is doing to my body has been one of the greatest challenges I think I have ever had to face. On that note though, accepting it does not mean giving in to it!! I have every intention of fighting back with everything I have in me!! I have goals in life that I have yet to achieve ... I just have realized it will take a little longer and maybe even some ingenious creativity on my end to achieve them.
I still want to further my education. I think I might go into photography!! I don't really know if I can turn that into a career or not ... but I know I love it and can have fun and get a lot of joy out of taking pictures!! That is all that really matters in the long run ... what I can find to do that can help me feel productive and happy!!
I still want to travel ... that is going to be more of a financial goal to help me achieve that one ... time to start saving my extra pennies!!! I want to go on a cruise through the Caribbean hitting all those tiny little islands. I want to go to Rio!!! I want to go to Germany and visit all the castles there!!! Yep!! I really better get serious about saving all those extra pennies, nickels and dimes!!!
I want to be as active as I can be in my youngest daughters activities and with my grand baby as well!! I want them to know that I am one tough bird who has a passion for life!! I want them to see and learn from my 'I CAN' attitude!! Even on my worst days I want to interact with them with a gleam in my eye, a smile on my face and show them that life is wonderful!!!
Yes, life can and will throw you some curve balls ... it's in how you strike back at it that counts!! You can either cringe and let it hit you hard or you can come out swinging and hit it hard!! I choose to come out swinging and hitting it hard into the bleachers (giving me enough time to hobble through all the bases until I come back around to home plate)!!!
My point is this ... I refuse to let RA victimize me and only show the negative side!! I do still have a life, even through all the pain. I might not get around as well as I use to, my body might be changing but my spirit, my very essence is still the same!! I am a fighter, a survivor and a great person who loves life, fun, love and happiness!!
{Pain Free Hugs} ~ K
Thursday, October 7, 2010
Depression with RA
I try really hard to keep my spirits high but Depression keeps rearing it's ugly head!!
I want things to be the way they used to be. I had a job, I socialized, I had friends ... I had a life!! Now it takes everything I have just to take a shower and then get out and about.
People keep telling me not to give up Hope ... how do I do that knowing there is no cure, that it's lifelong, progressive and, last but not least, very painful?!? I try to put on a strong face and enjoy each moment that I can, but deep inside I feel alone, cheated and just plain sad. I know I'm not alone in this, there are others out there like me.
I haven't worked in almost 2 years and will never work again. How do you move on with that kind of reality? I don't feel like I have any real purpose in life anymore. Someone suggested I go back to school. Maybe I could take online classes ... if I had the money. I know there is no way I could maneuver around a campus much less try to carry heavy textbooks around!! And what exactly would I major in?? I've tried to think of possible career choices I could do, but honestly, the fatigue and pain hinder my options. It tires me trying to do a load of laundry, to sit at the computer for too long or to cook an easy meal.
I just find it very hard to be or stay positive ... my only hope now is that the meds I'm on will slow the progression of my RA. There is no undoing the damage and erosion that is already done. There is no going back ... I try to look forward, but to what? What do I have to look forward to? Yes, I have a wonderful Husband and I look forward to the eventual time it will be just us. Yes, I have wonderful kids and I look forward to watching them continue to grow as people. Yes, I have a wonderful grandchild and I look forward to watching him grow and hopefully future grandbabies as well. But for me personally, what do I really have to look forward to? No new exciting career moves for me. No more dancing the night away. No more long walks ... maybe short spurts.
I just feel such loss because of this RA. I'm angry this has happened to me!!! I've gone from being on the go all the time to dreading having to go anywhere. I get so tired and end up hurting for days if I try to do too much. Going to the store is a challenge, even getting to use the motorized scooters they have available. I can't make any plans too far in advance because I just don't know how I'm going to feel. I don't like to cancel or break promises!!
I get really tired of the stares I get when I'm parking in the disabled spot or using the motorized scooters at the store. I know on the outside I look young and possibly able bodied ... but my Immune system is wreaking havoc on my body and I hurt all over!! I don't like when people try to compare their aches and pains to mine. I don't claim to know how you feel ... please don't assume you know how I feel!! There isn't a joint in my body that doesn't ache at one time or another!!! On my worst days I ache in EVERY joint in my body!!! I'm sorry if I'm coming across hatefully ... but when you hurt all the time it's hard to be chipper!!!
Please forgive me, I don't mean to be such a downer, I just need to get this off my chest ... I am depressed and need to admit that. My life isn't what it was and now it won't be what I wanted it to be ... not completely. I wanted to keep working. I wanted to take long walks at the park or the beach. I wanted to dance and party with my hubby and friends. I wanted a different life than what I have been dealt.
I will continue to try and cherish those "I'm glad I got to experience that" moments and hope I am able to have many. I will try to keep my head up and ignore those 'stares' and whispers. I will try to do what I can when I can. I will try to fight off this depression. I will try to accept what is and learn to adapt ... I have to admit though that it is tough. Some days I feel I have accepted it then, out of the blue, I just need to cry and mourn the loss of what was ...
I want things to be the way they used to be. I had a job, I socialized, I had friends ... I had a life!! Now it takes everything I have just to take a shower and then get out and about.
People keep telling me not to give up Hope ... how do I do that knowing there is no cure, that it's lifelong, progressive and, last but not least, very painful?!? I try to put on a strong face and enjoy each moment that I can, but deep inside I feel alone, cheated and just plain sad. I know I'm not alone in this, there are others out there like me.
I haven't worked in almost 2 years and will never work again. How do you move on with that kind of reality? I don't feel like I have any real purpose in life anymore. Someone suggested I go back to school. Maybe I could take online classes ... if I had the money. I know there is no way I could maneuver around a campus much less try to carry heavy textbooks around!! And what exactly would I major in?? I've tried to think of possible career choices I could do, but honestly, the fatigue and pain hinder my options. It tires me trying to do a load of laundry, to sit at the computer for too long or to cook an easy meal.
I just find it very hard to be or stay positive ... my only hope now is that the meds I'm on will slow the progression of my RA. There is no undoing the damage and erosion that is already done. There is no going back ... I try to look forward, but to what? What do I have to look forward to? Yes, I have a wonderful Husband and I look forward to the eventual time it will be just us. Yes, I have wonderful kids and I look forward to watching them continue to grow as people. Yes, I have a wonderful grandchild and I look forward to watching him grow and hopefully future grandbabies as well. But for me personally, what do I really have to look forward to? No new exciting career moves for me. No more dancing the night away. No more long walks ... maybe short spurts.
I just feel such loss because of this RA. I'm angry this has happened to me!!! I've gone from being on the go all the time to dreading having to go anywhere. I get so tired and end up hurting for days if I try to do too much. Going to the store is a challenge, even getting to use the motorized scooters they have available. I can't make any plans too far in advance because I just don't know how I'm going to feel. I don't like to cancel or break promises!!
I get really tired of the stares I get when I'm parking in the disabled spot or using the motorized scooters at the store. I know on the outside I look young and possibly able bodied ... but my Immune system is wreaking havoc on my body and I hurt all over!! I don't like when people try to compare their aches and pains to mine. I don't claim to know how you feel ... please don't assume you know how I feel!! There isn't a joint in my body that doesn't ache at one time or another!!! On my worst days I ache in EVERY joint in my body!!! I'm sorry if I'm coming across hatefully ... but when you hurt all the time it's hard to be chipper!!!
Please forgive me, I don't mean to be such a downer, I just need to get this off my chest ... I am depressed and need to admit that. My life isn't what it was and now it won't be what I wanted it to be ... not completely. I wanted to keep working. I wanted to take long walks at the park or the beach. I wanted to dance and party with my hubby and friends. I wanted a different life than what I have been dealt.
I will continue to try and cherish those "I'm glad I got to experience that" moments and hope I am able to have many. I will try to keep my head up and ignore those 'stares' and whispers. I will try to do what I can when I can. I will try to fight off this depression. I will try to accept what is and learn to adapt ... I have to admit though that it is tough. Some days I feel I have accepted it then, out of the blue, I just need to cry and mourn the loss of what was ...
Sunday, September 12, 2010
What is the point?
I find myself questioning my faith this morning. I don't understand all the pain and suffering people go through in this life. What is the point or is there even a point at all??
I have really reflected back on my life trying to find what I have done so terrible to be burdened now with RA. I wasn't any more rebellious than most teenagers. I've always had a good heart and have felt overwhelming guilt knowing I have hurt someone's feelings, whether it be intentional or not. I just don't understand why this has happened to me and to so many others ... what is the point of it all??
My son's sister gave birth to and lost her baby girl yesterday ... why? Why should she be heartbroken right now instead of bringing home her daughter?? I don't understand why this has happened to her!! She was due any day now and was happy, excited and ready to welcome her new child. Instead she now has to plan a memorial service only to return home to see an empty nursery that will now never be filled. What is the point of all this??
Everyone tells me God has a plan for me. I want to believe that by blogging, having an online support group and support page that maybe I'm making a difference, not only for myself but, for others who suffer as I do. Is this God's plan for me? To keep up the good fight and spread awareness, support and understanding? Maybe ... maybe I'm yet to discover why I have been stricken, in the prime of my life, with such a debilitating disease. Right now though I don't see the point to all of this.
I'm just having a really hard time wrapping my mind around all the tragedies, cruelties and suffering that goes on in this world. The Christians hate the Muslims and visa versa ... yet both religions teach Love and Compassion for your Brethren. Why are most wars fought due to religious conflict? I keep hearing words of hate and ignorance from all sides all in the name of God/Allah ... what is the point to all of this?? Is this really God's plan, all this strife and fighting, pain and suffering, cruelty and carelessness?
I know I am not the only one who is or has questioned my Faith. During times of extreme pain I pray, believe me, I pray. During times of joy and happiness, I again pray and am thankful. During times of strife I pray. During times that are peaceful I again pray. I try to live my life accordingly and know that I am not perfect. I try not to be judgmental of others and see every side of a subject or opinion. What am I doing wrong?
Whatever your beliefs may be ... do you see any point to all of this? Do you find yourself questioning your Faith? Do find yourself asking "Why me?" or "Why" in general?? Right now I am and am struggling with what is the reason? What is the Point?
I have really reflected back on my life trying to find what I have done so terrible to be burdened now with RA. I wasn't any more rebellious than most teenagers. I've always had a good heart and have felt overwhelming guilt knowing I have hurt someone's feelings, whether it be intentional or not. I just don't understand why this has happened to me and to so many others ... what is the point of it all??
My son's sister gave birth to and lost her baby girl yesterday ... why? Why should she be heartbroken right now instead of bringing home her daughter?? I don't understand why this has happened to her!! She was due any day now and was happy, excited and ready to welcome her new child. Instead she now has to plan a memorial service only to return home to see an empty nursery that will now never be filled. What is the point of all this??
Everyone tells me God has a plan for me. I want to believe that by blogging, having an online support group and support page that maybe I'm making a difference, not only for myself but, for others who suffer as I do. Is this God's plan for me? To keep up the good fight and spread awareness, support and understanding? Maybe ... maybe I'm yet to discover why I have been stricken, in the prime of my life, with such a debilitating disease. Right now though I don't see the point to all of this.
I'm just having a really hard time wrapping my mind around all the tragedies, cruelties and suffering that goes on in this world. The Christians hate the Muslims and visa versa ... yet both religions teach Love and Compassion for your Brethren. Why are most wars fought due to religious conflict? I keep hearing words of hate and ignorance from all sides all in the name of God/Allah ... what is the point to all of this?? Is this really God's plan, all this strife and fighting, pain and suffering, cruelty and carelessness?
I know I am not the only one who is or has questioned my Faith. During times of extreme pain I pray, believe me, I pray. During times of joy and happiness, I again pray and am thankful. During times of strife I pray. During times that are peaceful I again pray. I try to live my life accordingly and know that I am not perfect. I try not to be judgmental of others and see every side of a subject or opinion. What am I doing wrong?
Whatever your beliefs may be ... do you see any point to all of this? Do you find yourself questioning your Faith? Do find yourself asking "Why me?" or "Why" in general?? Right now I am and am struggling with what is the reason? What is the Point?
Wednesday, August 4, 2010
I am glad I got to experience that
Have you ever looked back on your life and thought, wow, I'm glad I got to experience that? I have, especially now that there is so much I might not get to experience. I truly am so thankful for my life, even though I now have RA, I still remain very thankful.
I am glad I've experienced so much already and look forward to whatever things I still have to experience. I also mourn for the things I'm missing or know that I'm going to miss out on. That is how RA changes your life. It steals your independence, your mobility, your freedom to just come and go so easily.
I'm going to share with you what my days were like before RA and what they are like now Living with RA. I don't want pity, sympathy or anything like that ... I want to educate people to help raise awareness and understanding. Living with a debilitating, deforming and chronically painful disease is hard enough as it is, but the uninformed comments and misconceptions I often hear coming from others is painful as well. Other than the disfigurements you might be able to see on my body, RA is unseen. You can not visibly see the excruciating pain I am feeling in my jaw, neck, shoulders, elbows, wrists, fingers, hips, back, knees, ankles and toes. You can not see how my shoulders or hips are 'locked up' and don't want to move. You can not see the extreme fatigue I feel. I may outwardly look fine to you, but believe me, I am not fine.
Let's go back 3 or 4 years ago (2006/07) when I was running around like a Spring Chicken full of energy and life!! I would get up at 5 a.m. and hop in the shower, get myself ready and then get the kiddos up. Four kids with 4 different schools/places to go!! I had one going to one High School close to home, another going to an IB High School across town, another going to middle school and the youngest in elementary. They all had extracurricular activities or events to attend, one was in JROTC, the other in Band, one in Chorus and one in plays and programs at school. Whew, that sounds so exhausting now :) I sure do miss those days!!
I got to work about 6:45 and worked until 5:30 M-F and 12:30 on Saturdays. I was an Assistant Manager for a local paint store and loved my job. I could carry a five gallon bucket of paint in each hand, lift those same buckets up as high as my chin and or pull them down from that same height with such ease. It was a very physical job that kept me in shape. As I was leaving this field of work, I knew I felt tired all the time and I would get so stiff during the ride home from work. I could barely get out of my car and then limped into the house. But I kept on truckin'.
I did all the errands and bill paying back then too. I got all the groceries without assistance and I ran the kids to all their events most of the time. I was always on the go. I had a social life hanging out with my husband and friends, going places with my kids, going to the flea market, company parties and dancing. I am so glad I got to experience all of that.
Now it's August 2010, just 2 years after I was diagnosed with RA. My mornings, days, my entire life are different. Some of you might want to get the Kleenex if you haven't done so already. It is not my intention to make you cry, but you might.
If I've had any sleep at all the night before, I usually wake up around 4 a.m. with my hubby so that I can have a few quiet minutes alone with him. On a bad day he will usually have to help me to sit up, watch me cry and get used to that position, then gently put his arms around me to help me stand up. I cry again. Once I get stable on my feet he then helps me get to the bathroom, pull down my clothes and sets me down on the toilet. I cry again. He then puts his arms around me again to help me stand up, pull up my clothes and hear me cry out again. He then walks me back to the bed and helps me sit down and then pulls my legs back up into the bed while pivoting me to lie me down. I cry again. He has to help me adjust my pillow and pull my blanket over me, my hands hurt so bad I can not bear to touch anything with them. I cry again. The pain is unbearable.
Some nights I sleep in spurts or not at all. Either the pain is so throbbing and intense I can't sleep or I doze for short periods lasting no more than an hour or two. I have to depend on everyone else for just about everything. I need help to get up, go to the bathroom, getting back into bed, for food and drinks, to brush my hair and to dress myself. Those are those days I dread the most. I don't like having to ask anyone to help me take care of myself.
On a 'good' day, after maneuvering myself in a similar fashion as to a 3-point turn, I have to 'rock' my legs to get the momentum to set up. I can't use my elbows or forearms to lift myself thanks to all the Rheumatoid Nodules on them or my wrists or hands to push myself up because of the pain and I just don't have any strength in them. After I get myself set up I slowly try to stand. I never know what my knees, ankles or feet are up for until that very moment. If all goes well I scoot to the bathroom because my ankles are stiff and don't want to 'cooperate', as I usually say. I do have a six inch toilet seat riser so that I don't have to 'fall' down onto the toilet. I scoot back to the bed and get out my NSaids and pain pills. I lie back down for a while waiting on the pain to become somewhat more tolerable, if there is such a thing.
On these 'good' days I might try to put a load of laundry in. That is about all I get done because I usually need someone to pull the heavy wet clothes out and into the dryer and then get them out of the dryer because I can't get down into there myself. If I do actually fold a load of clothes I'm so exhausted afterwards I feel like I just ran a marathon or something. The fatigue wins out and I have to take a nap.
If I do venture out it is usually to the Dr., the pharmacy and maybe the grocery store. I usually have someone drive me as I don't feel strong enough or safe enough most of the time to handle a moving vehicle. I also need someone to go into the grocery store with me. Although I am able to use the electric carts while grocery shopping I am unable to reach some items (shoulders won't let me) or lift some items. I can't lift a gallon of milk to put into my cart and two liters are quite heavy and awkward too. All of that is exhausting and usually requires a nap afterward too.
Just sitting here typing this blog up is wearing me out. My fingers hurt, my wrists are screaming at me and my back and hips aren't too happy about sitting here this long. I know I will pay for this tonight and into tomorrow, but I had this overwhelming need to get this done and posted. I am glad I got to experience this moment. Sometimes the mind won't shut off until I either write something down or type it up. As long as I can, I will continue to write and blog ... it's my own outlet from RA. It is the last bit of me I can still fight with, my mind, it still works fine like a well oiled machine!!
Yes, I am truly glad I got to experience the life I have and even the moments like this where I feel a sense of accomplishment.
{Pain Free Hugs} to All :)
I am glad I've experienced so much already and look forward to whatever things I still have to experience. I also mourn for the things I'm missing or know that I'm going to miss out on. That is how RA changes your life. It steals your independence, your mobility, your freedom to just come and go so easily.
I'm going to share with you what my days were like before RA and what they are like now Living with RA. I don't want pity, sympathy or anything like that ... I want to educate people to help raise awareness and understanding. Living with a debilitating, deforming and chronically painful disease is hard enough as it is, but the uninformed comments and misconceptions I often hear coming from others is painful as well. Other than the disfigurements you might be able to see on my body, RA is unseen. You can not visibly see the excruciating pain I am feeling in my jaw, neck, shoulders, elbows, wrists, fingers, hips, back, knees, ankles and toes. You can not see how my shoulders or hips are 'locked up' and don't want to move. You can not see the extreme fatigue I feel. I may outwardly look fine to you, but believe me, I am not fine.
Let's go back 3 or 4 years ago (2006/07) when I was running around like a Spring Chicken full of energy and life!! I would get up at 5 a.m. and hop in the shower, get myself ready and then get the kiddos up. Four kids with 4 different schools/places to go!! I had one going to one High School close to home, another going to an IB High School across town, another going to middle school and the youngest in elementary. They all had extracurricular activities or events to attend, one was in JROTC, the other in Band, one in Chorus and one in plays and programs at school. Whew, that sounds so exhausting now :) I sure do miss those days!!
I got to work about 6:45 and worked until 5:30 M-F and 12:30 on Saturdays. I was an Assistant Manager for a local paint store and loved my job. I could carry a five gallon bucket of paint in each hand, lift those same buckets up as high as my chin and or pull them down from that same height with such ease. It was a very physical job that kept me in shape. As I was leaving this field of work, I knew I felt tired all the time and I would get so stiff during the ride home from work. I could barely get out of my car and then limped into the house. But I kept on truckin'.
I did all the errands and bill paying back then too. I got all the groceries without assistance and I ran the kids to all their events most of the time. I was always on the go. I had a social life hanging out with my husband and friends, going places with my kids, going to the flea market, company parties and dancing. I am so glad I got to experience all of that.
Now it's August 2010, just 2 years after I was diagnosed with RA. My mornings, days, my entire life are different. Some of you might want to get the Kleenex if you haven't done so already. It is not my intention to make you cry, but you might.
If I've had any sleep at all the night before, I usually wake up around 4 a.m. with my hubby so that I can have a few quiet minutes alone with him. On a bad day he will usually have to help me to sit up, watch me cry and get used to that position, then gently put his arms around me to help me stand up. I cry again. Once I get stable on my feet he then helps me get to the bathroom, pull down my clothes and sets me down on the toilet. I cry again. He then puts his arms around me again to help me stand up, pull up my clothes and hear me cry out again. He then walks me back to the bed and helps me sit down and then pulls my legs back up into the bed while pivoting me to lie me down. I cry again. He has to help me adjust my pillow and pull my blanket over me, my hands hurt so bad I can not bear to touch anything with them. I cry again. The pain is unbearable.
Some nights I sleep in spurts or not at all. Either the pain is so throbbing and intense I can't sleep or I doze for short periods lasting no more than an hour or two. I have to depend on everyone else for just about everything. I need help to get up, go to the bathroom, getting back into bed, for food and drinks, to brush my hair and to dress myself. Those are those days I dread the most. I don't like having to ask anyone to help me take care of myself.
On a 'good' day, after maneuvering myself in a similar fashion as to a 3-point turn, I have to 'rock' my legs to get the momentum to set up. I can't use my elbows or forearms to lift myself thanks to all the Rheumatoid Nodules on them or my wrists or hands to push myself up because of the pain and I just don't have any strength in them. After I get myself set up I slowly try to stand. I never know what my knees, ankles or feet are up for until that very moment. If all goes well I scoot to the bathroom because my ankles are stiff and don't want to 'cooperate', as I usually say. I do have a six inch toilet seat riser so that I don't have to 'fall' down onto the toilet. I scoot back to the bed and get out my NSaids and pain pills. I lie back down for a while waiting on the pain to become somewhat more tolerable, if there is such a thing.
On these 'good' days I might try to put a load of laundry in. That is about all I get done because I usually need someone to pull the heavy wet clothes out and into the dryer and then get them out of the dryer because I can't get down into there myself. If I do actually fold a load of clothes I'm so exhausted afterwards I feel like I just ran a marathon or something. The fatigue wins out and I have to take a nap.
If I do venture out it is usually to the Dr., the pharmacy and maybe the grocery store. I usually have someone drive me as I don't feel strong enough or safe enough most of the time to handle a moving vehicle. I also need someone to go into the grocery store with me. Although I am able to use the electric carts while grocery shopping I am unable to reach some items (shoulders won't let me) or lift some items. I can't lift a gallon of milk to put into my cart and two liters are quite heavy and awkward too. All of that is exhausting and usually requires a nap afterward too.
Just sitting here typing this blog up is wearing me out. My fingers hurt, my wrists are screaming at me and my back and hips aren't too happy about sitting here this long. I know I will pay for this tonight and into tomorrow, but I had this overwhelming need to get this done and posted. I am glad I got to experience this moment. Sometimes the mind won't shut off until I either write something down or type it up. As long as I can, I will continue to write and blog ... it's my own outlet from RA. It is the last bit of me I can still fight with, my mind, it still works fine like a well oiled machine!!
Yes, I am truly glad I got to experience the life I have and even the moments like this where I feel a sense of accomplishment.
{Pain Free Hugs} to All :)
Monday, July 26, 2010
I want my old body back ... this one is broken :(
Every morning when I open my eyes my first thoughts are how to maneuver myself out of bed so I can get to the bathroom!! From there I debate on which pain meds I need first and foremost, just the NSAIDS for now or should I go ahead and take that Lortab too before I regret not taking it later and whether or not it's going to be a Prednisone kind of day. It's a never ending process.
I love the movie "Freaky Friday" (either version) and often times feel that is what has had to have happened to me!! In my mind I'm still very young, vibrant, energetic and full of life. My reality, physically, is not the case ... I feel old, dull, tired and miss having a life. I want to know who the old lady is who stole my body!!! She can have this one back!!
When I look in the mirror I know it's really me and my body, but I feel like I'm trapped in this broken down shell and there is no escape!! I can see the Rheumatoid Nodules on my arms around my elbows, on my legs close to my ankles, around my knees, on my feet and my fingers too. I can see and feel the limp I walk with now and how slowly I walk too. I notice how my arms hang with a slight bend now, I can no longer straighten them out. I can honestly see these physical changes going and can most definitely feel my body breaking down. I still am having trouble accepting that this really is my reality.
Just three summers ago I was able to carry a 5 gallon bucket of paint in each hand. I was lifting and stacking those suckers 4 buckets high like they were nothing. I can't lift a single gallon of anything now. I can't grab the milk until it's almost empty and then it takes both hands. I can't unscrew the lid off the mayo jar or any other kind of jar for that matter :(
I very rarely drive these days and when I do it's down to the drug store less than a mile from my home. My shoulders lock up into excruciating pain not to mention I don't feel safe driving anymore. There just is no strength in my wrists or hands anymore. Some days I can barely pull my own pants up much less be in control of a vehicle!! I feel such a loss of freedom!!
I have adjusted my entire wardrobe to make my life simpler. I only own one pair of shoes that totally encase my feet and I just recently found those. I mostly wear my house shoes, sandals, clogs or slides. I own more skirts these days than I ever have my entire teen and adult life. It is so much easier to hike a skirt up than trying to fiddle with buttons, snaps and zippers.
I have chopped all my hair off (again) just so I can manage it. It was becoming too difficult to wash, brush and style it. I now use an electric tooth brush because I don't have the strength in my wrists and hands to really scrub my teeth. A 6 inch toilet seat riser has been a real help too ... nothing like being stuck and unable to get up without it!!
I realize now all the 'little' things I used to take for granted. Simple everyday tasks seem like major challenges most days. It is very frustrating, to say the least, when trying to brush your teeth and you can't squeeze the toothpaste or you can't turn the door knob to go outside. It's the 'little' things ...
I don't know what I did to deserve this fate in life. Maybe if I had eaten better, exercised more, partied less when I was younger, listened to my parents more ... maybe it doesn't matter what I have or haven't done. All I know is I want my old body back ... this one is broken :(
I love the movie "Freaky Friday" (either version) and often times feel that is what has had to have happened to me!! In my mind I'm still very young, vibrant, energetic and full of life. My reality, physically, is not the case ... I feel old, dull, tired and miss having a life. I want to know who the old lady is who stole my body!!! She can have this one back!!
When I look in the mirror I know it's really me and my body, but I feel like I'm trapped in this broken down shell and there is no escape!! I can see the Rheumatoid Nodules on my arms around my elbows, on my legs close to my ankles, around my knees, on my feet and my fingers too. I can see and feel the limp I walk with now and how slowly I walk too. I notice how my arms hang with a slight bend now, I can no longer straighten them out. I can honestly see these physical changes going and can most definitely feel my body breaking down. I still am having trouble accepting that this really is my reality.
Just three summers ago I was able to carry a 5 gallon bucket of paint in each hand. I was lifting and stacking those suckers 4 buckets high like they were nothing. I can't lift a single gallon of anything now. I can't grab the milk until it's almost empty and then it takes both hands. I can't unscrew the lid off the mayo jar or any other kind of jar for that matter :(
I very rarely drive these days and when I do it's down to the drug store less than a mile from my home. My shoulders lock up into excruciating pain not to mention I don't feel safe driving anymore. There just is no strength in my wrists or hands anymore. Some days I can barely pull my own pants up much less be in control of a vehicle!! I feel such a loss of freedom!!
I have adjusted my entire wardrobe to make my life simpler. I only own one pair of shoes that totally encase my feet and I just recently found those. I mostly wear my house shoes, sandals, clogs or slides. I own more skirts these days than I ever have my entire teen and adult life. It is so much easier to hike a skirt up than trying to fiddle with buttons, snaps and zippers.
I have chopped all my hair off (again) just so I can manage it. It was becoming too difficult to wash, brush and style it. I now use an electric tooth brush because I don't have the strength in my wrists and hands to really scrub my teeth. A 6 inch toilet seat riser has been a real help too ... nothing like being stuck and unable to get up without it!!
I realize now all the 'little' things I used to take for granted. Simple everyday tasks seem like major challenges most days. It is very frustrating, to say the least, when trying to brush your teeth and you can't squeeze the toothpaste or you can't turn the door knob to go outside. It's the 'little' things ...
I don't know what I did to deserve this fate in life. Maybe if I had eaten better, exercised more, partied less when I was younger, listened to my parents more ... maybe it doesn't matter what I have or haven't done. All I know is I want my old body back ... this one is broken :(
Saturday, July 24, 2010
A new journey begins
I have never blogged before, but can't imagine it's much different from keeping a journal. Well the fact I'm putting it all here on the web is a huge difference I suppose :)
So I'm going to start with my earliest memories of what I now know were possible symptoms of RA. There is no way I can confirm whether or not I had RA back then, as you can not turn back time, but I believe it may be true. Of course back then (in the 1970's) people didn't really talk about RA. Hell people don't really talk about it now with the exception of those of us whose lives it affects!! Rheumatoid Arthritis was something only 'old people' had.
I can remember as early as age 7 feeling the need to 'pop' my fingers and toes to relieve the 'pressure' I was feeling in them. Oh my mother would fuss at me and tell me 'You're going to get Arthritis if you don't stop doing that'. Now we all know that isn't true ... or is it??
My next vivid memory of these symptoms was in my very early twenties after I had my first child. My ankles would get stiff. I never really thought much about that though given I had sprained my left ankle twice during childhood. My knees would bother me from time to time. I never really gave that much thought either since I had had many bicycle accidents and roller skating mishaps as a child. My jaw would 'lock up' on occasion but I have TMJ according to the dentist I had seen in my teens. I just blew them off at the time to getting 'Arthritis'.
In my thirties I still had all these same aches and pains but really never gave it much thought. I was getting older and was trying to manage a full time job, my household, my marriage and raise 4 kids. I was juggling a lot and thought, it's just 'Arthritis'.
I would be stiff in the mornings but after a hot shower and getting everyone up and around I would be fine. I would go work 10 to 11 hours a day (I was in management and had to put my time in). I worked a very physical and demanding job but handled it quite well at the time. After the drive home I would be so stiff and have trouble getting out of my car. I blamed the long days on me feet for that.
In 2007 I had a major life change after my mother had a heart attack and quadruple by-pass. We moved to be closer to her and my dad. I took a few months off work and decided that when I did go back to work I didn't want to work such a physically demanding job. I thought I was getting to old to put in the time and effort I had done at my previous job. I went to work a short period of time in retail, only to become a highly paid and glorified stock person. :( After the Christmas rush I decided I just couldn't take it anymore and I quit. I then went to work in a deli/bakery ... I thought 'How hard could that be?'.
At first this new job wasn't too bad. I eventually became the Cake Decorator and was having the time of my life expressing my creativity!! During this time I was also helping my folks remodel a home they had bought. It was a lot of physical work, but I was having fun with my husband, kids, mom and dad in designing and doing the remodel. After about 6 weeks my hips locked up on me and I thought maybe I was over doing it a little. I just delegated more of the tedious stuff for the kids to do. A few weeks after that both of my knees started hurting all the time. I called my doctor.
I wanted to make sure I hadn't sprained or strained anything when I went in to see my doctor. I told him all the work I had been doing but he wanted to run a 'special' test on me. He did the RF and some other blood work on me. When the labs came back his nurse called me and told me the doc wanted to see me. I knew it had to be bad if he wanted to talk to me personally instead of the nurse conveying the message to me.
I went in to see him and he told me I had Rheumatoid Arthritis and he started me on Plaquenil once a day. At that point in time I had no clue what RA really was. I initially thought to myself 'Well it's official, you have Arthritis'. I would soon learn it is much more than that!! My doc referred me to a specialist that I wouldn't be able to get in to see until December ... this was August(2008)!! Oh well I thought I'll just take these pills and see what the specialist has to say. My RF number at that time was almost 600.
I finally got in to see the specialist and at that time all he did was double my dose of Plaquenil. I had asked him about the Biologics I was seeing commercials for and he told me we weren't ready for that yet. I was naive and uninformed about what was going on with my body or how to communicate with my Dr. I just went with what he told me ... he was the specialist, right?!?
January 7th was the last day I worked. My hands and feet were so swollen I could barely move and just touching my hands sent me into tears. I went to ask my boss if I could leave to go to my doc to find out what he could do for me. She actually had the nerve to tell me not to cry about it. I was in so much pain I could barely walk and then I had to face driving myself home and back up to my docs!! I could barely turn the key to start my damned car!! I got in to see my regular doc and he gave me shots in my hands and feet and told me to take a week off to rest my feet and hands. That turned into another week off then two more weeks off and so on and so on.
In February the Specialist added Folic Acid and Methotrexate to my treatment. I had a reaction to the Methotrexate and he yanked me off of it by the 3rd dose. I was so swollen and couldn't walk or barely move!! Finally in mid March he started me on Arava. At this point my RF numbers were close to 1300!! I don't know if it was the warmer weather moving in or the Arava, but for a brief time I thought I was feeling better. That would change in just a few short months. By November I was feeling pain all the time and my 'stiffness' would last upwards of all damned day!!
I was super frustrated with the Specialist I was seeing. He would dismiss my questions and told me not to believe everything I read on the internet about RA, the tests that are sometimes used or about the treatment options available. He told me that if the Arava didn't work our next step would be Gold injections. REALLY?!?! That is an old, outdated treatment option!! I wanted to stop being in pain!! I didn't want to keep playing Guinea Pig to see if this or that would work. I wanted to get to the heart of the matter!!
I spent most of the rest of the winter in bed!! Most days I needed help sitting up, standing up, going to the toilet, brushing my hair, putting my clothes, socks and shoes on and couldn't stand the pain to brush my own damned teeth!! I couldn't wait to get our Tax Return ... I was going to use money from that to see a different Rheumatologist since I had lost my Insurance coverage anyway. In the mean time we bought me a wheel chair. I was tired of being stuck in this house and everyone else being stuck in the house because I couldn't go anywhere!!
I went to my new Rheumy March 16, 2010. She could see immediately how swollen and inflamed all my joints were. She hadn't even looked at the X-ray results or labs I brought with me from my regular doc yet. My RF at this point was almost 1800 (my other rheumy had told me these numbers mean nothing?) and X-rays showed erosion beginning on several of my joints. She and I discussed treatment options. She asked me how I felt about Biologics. I told her I had read up on all of them and was a little nervous about some of the risks involved and side effects. She told me that yes, there is risk, because we are basically stopping my Immune System in it's tracks since it doesn't seem to want to play nice. I told her I was willing to try anything at that point. I was in tremendous pain and almost at my ropes end!!! She gave me a 'super' steroid shot for immediate relief and my first shot of Humira.
By the next day I was hobbling around the house, but at least I was up and out of bed!! The day after that my best friend and my girls loaded me and my wheelchair up and headed to the mall!! By that weekend I was at the zoo with family and friends getting wheeled around and having fun and was out of the house!!!
The Barometric Pressure going up and down still messes me up and tries to knock me down!! Once a month my hormones are against me and cause flare ups too. For now though, at least while it's warm outside, I feel I have huge improvements in my life!! I'm not constantly in bed, not constantly in pain so severe I just want to end it all and I'm not feeling as hopeless as I was.
I know there is no cure and that as time goes by I will more than likely have to move onto another treatment option. I know that as time goes by my body will slowly (hopefully slowly) deteriorate and eventually I will be totally and completely dependent on others for my every need. Until that day comes I will continue on the journey of Life and take it one day at a time. I will cherish the good days and fight like hell to get through the bad!!
Hope I did okay on my first Blog entry ... until next time. ~ K ~
So I'm going to start with my earliest memories of what I now know were possible symptoms of RA. There is no way I can confirm whether or not I had RA back then, as you can not turn back time, but I believe it may be true. Of course back then (in the 1970's) people didn't really talk about RA. Hell people don't really talk about it now with the exception of those of us whose lives it affects!! Rheumatoid Arthritis was something only 'old people' had.
I can remember as early as age 7 feeling the need to 'pop' my fingers and toes to relieve the 'pressure' I was feeling in them. Oh my mother would fuss at me and tell me 'You're going to get Arthritis if you don't stop doing that'. Now we all know that isn't true ... or is it??
My next vivid memory of these symptoms was in my very early twenties after I had my first child. My ankles would get stiff. I never really thought much about that though given I had sprained my left ankle twice during childhood. My knees would bother me from time to time. I never really gave that much thought either since I had had many bicycle accidents and roller skating mishaps as a child. My jaw would 'lock up' on occasion but I have TMJ according to the dentist I had seen in my teens. I just blew them off at the time to getting 'Arthritis'.
In my thirties I still had all these same aches and pains but really never gave it much thought. I was getting older and was trying to manage a full time job, my household, my marriage and raise 4 kids. I was juggling a lot and thought, it's just 'Arthritis'.
I would be stiff in the mornings but after a hot shower and getting everyone up and around I would be fine. I would go work 10 to 11 hours a day (I was in management and had to put my time in). I worked a very physical and demanding job but handled it quite well at the time. After the drive home I would be so stiff and have trouble getting out of my car. I blamed the long days on me feet for that.
In 2007 I had a major life change after my mother had a heart attack and quadruple by-pass. We moved to be closer to her and my dad. I took a few months off work and decided that when I did go back to work I didn't want to work such a physically demanding job. I thought I was getting to old to put in the time and effort I had done at my previous job. I went to work a short period of time in retail, only to become a highly paid and glorified stock person. :( After the Christmas rush I decided I just couldn't take it anymore and I quit. I then went to work in a deli/bakery ... I thought 'How hard could that be?'.
At first this new job wasn't too bad. I eventually became the Cake Decorator and was having the time of my life expressing my creativity!! During this time I was also helping my folks remodel a home they had bought. It was a lot of physical work, but I was having fun with my husband, kids, mom and dad in designing and doing the remodel. After about 6 weeks my hips locked up on me and I thought maybe I was over doing it a little. I just delegated more of the tedious stuff for the kids to do. A few weeks after that both of my knees started hurting all the time. I called my doctor.
I wanted to make sure I hadn't sprained or strained anything when I went in to see my doctor. I told him all the work I had been doing but he wanted to run a 'special' test on me. He did the RF and some other blood work on me. When the labs came back his nurse called me and told me the doc wanted to see me. I knew it had to be bad if he wanted to talk to me personally instead of the nurse conveying the message to me.
I went in to see him and he told me I had Rheumatoid Arthritis and he started me on Plaquenil once a day. At that point in time I had no clue what RA really was. I initially thought to myself 'Well it's official, you have Arthritis'. I would soon learn it is much more than that!! My doc referred me to a specialist that I wouldn't be able to get in to see until December ... this was August(2008)!! Oh well I thought I'll just take these pills and see what the specialist has to say. My RF number at that time was almost 600.
I finally got in to see the specialist and at that time all he did was double my dose of Plaquenil. I had asked him about the Biologics I was seeing commercials for and he told me we weren't ready for that yet. I was naive and uninformed about what was going on with my body or how to communicate with my Dr. I just went with what he told me ... he was the specialist, right?!?
January 7th was the last day I worked. My hands and feet were so swollen I could barely move and just touching my hands sent me into tears. I went to ask my boss if I could leave to go to my doc to find out what he could do for me. She actually had the nerve to tell me not to cry about it. I was in so much pain I could barely walk and then I had to face driving myself home and back up to my docs!! I could barely turn the key to start my damned car!! I got in to see my regular doc and he gave me shots in my hands and feet and told me to take a week off to rest my feet and hands. That turned into another week off then two more weeks off and so on and so on.
In February the Specialist added Folic Acid and Methotrexate to my treatment. I had a reaction to the Methotrexate and he yanked me off of it by the 3rd dose. I was so swollen and couldn't walk or barely move!! Finally in mid March he started me on Arava. At this point my RF numbers were close to 1300!! I don't know if it was the warmer weather moving in or the Arava, but for a brief time I thought I was feeling better. That would change in just a few short months. By November I was feeling pain all the time and my 'stiffness' would last upwards of all damned day!!
I was super frustrated with the Specialist I was seeing. He would dismiss my questions and told me not to believe everything I read on the internet about RA, the tests that are sometimes used or about the treatment options available. He told me that if the Arava didn't work our next step would be Gold injections. REALLY?!?! That is an old, outdated treatment option!! I wanted to stop being in pain!! I didn't want to keep playing Guinea Pig to see if this or that would work. I wanted to get to the heart of the matter!!
I spent most of the rest of the winter in bed!! Most days I needed help sitting up, standing up, going to the toilet, brushing my hair, putting my clothes, socks and shoes on and couldn't stand the pain to brush my own damned teeth!! I couldn't wait to get our Tax Return ... I was going to use money from that to see a different Rheumatologist since I had lost my Insurance coverage anyway. In the mean time we bought me a wheel chair. I was tired of being stuck in this house and everyone else being stuck in the house because I couldn't go anywhere!!
I went to my new Rheumy March 16, 2010. She could see immediately how swollen and inflamed all my joints were. She hadn't even looked at the X-ray results or labs I brought with me from my regular doc yet. My RF at this point was almost 1800 (my other rheumy had told me these numbers mean nothing?) and X-rays showed erosion beginning on several of my joints. She and I discussed treatment options. She asked me how I felt about Biologics. I told her I had read up on all of them and was a little nervous about some of the risks involved and side effects. She told me that yes, there is risk, because we are basically stopping my Immune System in it's tracks since it doesn't seem to want to play nice. I told her I was willing to try anything at that point. I was in tremendous pain and almost at my ropes end!!! She gave me a 'super' steroid shot for immediate relief and my first shot of Humira.
By the next day I was hobbling around the house, but at least I was up and out of bed!! The day after that my best friend and my girls loaded me and my wheelchair up and headed to the mall!! By that weekend I was at the zoo with family and friends getting wheeled around and having fun and was out of the house!!!
The Barometric Pressure going up and down still messes me up and tries to knock me down!! Once a month my hormones are against me and cause flare ups too. For now though, at least while it's warm outside, I feel I have huge improvements in my life!! I'm not constantly in bed, not constantly in pain so severe I just want to end it all and I'm not feeling as hopeless as I was.
I know there is no cure and that as time goes by I will more than likely have to move onto another treatment option. I know that as time goes by my body will slowly (hopefully slowly) deteriorate and eventually I will be totally and completely dependent on others for my every need. Until that day comes I will continue on the journey of Life and take it one day at a time. I will cherish the good days and fight like hell to get through the bad!!
Hope I did okay on my first Blog entry ... until next time. ~ K ~
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