Those are often the best things to make one happy. I have been fighting for a long while now. We've been caught up as the rest of the country has in trying to make ends meet with whatever we have. It's been a long struggle. Truth be told, I wouldn't mind hitting the lottery right about now. Not so much for all the glitz and glam of being rich. I would rather have enough to make sure things were paid and that I wouldn't have to worry if my lights are going to be turned off or if we're going to have enough food to last the next three weeks. This is all just part of adult life. It's the kind of stuff that we didn't have to worry about when we were kids. We could just say we were hungry and something would be there. I still wouldn't trade this though. All my struggles are making me who I am.
I was reminded today of the simple pleasures that can make all the stress and worry slip away for a few minutes. Thankfully, laughter and love are still free and were present for me this morning. Not that they aren't here any other time. It's just that I have paid more attention to the important things like the people who really care about me, my caring for others in return, playing with my pup and just waking up in the morning. I could very well have none of those things at any given time. Strangely, I'm thankful to PsA for showing me the things that really matter. If it wasn't for PsA (and Lupus), I wouldn't have slowed down. I would have been racing alongside everyone else in the mad dash for that money. I would have missed out on some really good memories. So even though I hate the dang disease, I have to say thanks.
Today is a pretty chill day here. Not going to be posting a huge entry. I did have a couple of posts planned but I'm going to hold off on those until I can really sit down and concentrate. Good ol' Arthur has been making my mind foggy. When I think I've got it all set, something gets out of line. Just one of those things, I suppose. Not to mention the fact that it's supposed to drop down close to the freezing mark tonight. We're set to get our first frost of the fall/winter season. Almost time to dig out those sweaters and comforters. Almost. It also means that I'll have more difficulty doing things until the weather settles into being cold on a consistent basis. The up and down temps wreak havoc on my body because it can't get used to one thing or another. It's all confused. Okay, I'm pretty much that way anyway.
Patches and I will probably just sit today and veg in front of the tv. I'll probably do a bit of crochet or read. I have been neglecting work on my family tree. I may work on that. So many possibilities! But for today, I'll just it an easy day. Maybe something more exciting tomorrow. We'll just have to wait and see what happens. Hope it's an easy day for all you out there.
Until next time,
Kay
Friday, September 30, 2011
Quote of the Day
It is only when we truly know and understand that we have a limited time on Earth and that we have no way of knowing when our time is up that we will begin to live each day to the fullest, as if it were the only one we had.
~ Elisabeth Kubler-Ross
Thursday, September 29, 2011
Fell on Black Days
Why, hello there. Nice elephant you have in the room. Yes, by that I mean the fact that many of my posts so far this week have been sort of downers. Even as I was writing them, I could tell that the depression was making it difficult to post without some negativity and sadness in the blogs. I did seriously consider editing them to make them more upbeat and happy-go-lucky. But I knew that it wasn't going to be a true representation of my life if I started editing out the parts that didn't seem positive all the way through. The end result was what has been posted and now this blog.
Anyone who has to deal with a chronic illness will go through bouts of depression. If someone claims otherwise, I think that they're not being honest with themselves. Depression is a tricky subject for people to be open about. No one wants to admit that they feel weak and they need someone's help. Men, especially, will either push the feelings down deeper and ignore them instead of reaching out for help. I think the stigma still attached to the word, "depression", haunts people of certain generations. Whether or not that's the case, it's a natural reaction to whatever disease you are battling against.
I've had several bouts of depression over the years. I went through the normal teenage angst years where everything was against me and life was so hard. If I had only known, right? When you're in the midst of something, it's sometimes hard to see the larger picture. Same thing with depression. I've had times when it snuck in and clouded everything before I knew what was happening. I couldn't see that it was a temporary situation. I just felt like at that point everything was over. Nothing else could make a difference. Other times, depression came down on me like a weight. I could literally feel something pushing down on me, making me feel like it was just pointless to do anything but walk away. Those episodes really scare me because my thoughts go into those very dark places. Sometimes I know what triggers the episodes and sometimes I have no clue whatsoever what happened. I know what has made me feel down this week. Not only has the weather been grey and gloomy here, but it's also been a week where my pain levels have been high. I also have been thinking of a very close friend who passed away just 2 years ago. She had RA but we shared a lot with each other over the 6 plus years that I knew her. In fact, I often call her my "second mom" as she would give me advice and guidance when I needed it most. Yes, often when I didn't ask for it. She just knew.
It's also coming up on the five year anniversary of my brother's death. Bill was just barely a teenager when he was diagnosed with Systemic lupus erythematosus. Unfortunately the disease chose to reside within his lungs. When he would have a flare, the lungs would rip apart and bleed. Basically he would be drowning on his own blood. Between the ages of 15 and 26, Bill was on life support over 19 times, had countless blood transfusions, and spent a large chunk of his life lying in a hospital bed. But (yes, yes, another but) he rarely lost his smile. He always seemed to have a joke or two ready to make another person smile instead of dwelling on his own pain. Even he had bouts of depression. There were a few times when he did throw his hands up and ask the very same questions I tend to ask today. Why do I have to go through this? What did I do to deserve a lifetime of pain, limits and frustrations? Is there anything out there that I can do now that I have lost who I was?
It took a while but he would come around and smile again. He would try to make up for the worry he caused even though he was told repeatedly that it wasn't necessary. We worry because we love. I try to follow his example in dealing with my bouts of depression. I let myself feel, rant, rave and cry. Then I take a deep breath and take that first step forward. Sometimes it's easy. Other times I can't seem to make my foot move. I have learned to reach out and lean on those around me who I trust. For me, focusing on a task that's simple and repetitive for a short amount of time can help draw my mind from the worries. If pain is making it difficult, I will try to lose myself in a book or with some mind-numbing tv shows. Anything to keep my brain from constantly focusing on whatever it is that has triggered the depression. This isn't something I learned quickly. It's taken a long time to redirect myself. Truthfully, there are times when it doesn't work as well as I want it to. But if I want to not take medication, I have to be gentle with myself and try my hardest.
So this week I have been working more on crochet projects and reading when I'm not checking in with my Facebook group or playing at Pogo. I know I'll make it through this bout and be ready to enjoy the good times. What are some things you, my readers, do to battle your depression? Either way, be gentle with yourself. Give yourself room to go through that dark valley because the light will come soon enough. Remember that you're never alone.
Until next time,
Kay
Anyone who has to deal with a chronic illness will go through bouts of depression. If someone claims otherwise, I think that they're not being honest with themselves. Depression is a tricky subject for people to be open about. No one wants to admit that they feel weak and they need someone's help. Men, especially, will either push the feelings down deeper and ignore them instead of reaching out for help. I think the stigma still attached to the word, "depression", haunts people of certain generations. Whether or not that's the case, it's a natural reaction to whatever disease you are battling against.
I've had several bouts of depression over the years. I went through the normal teenage angst years where everything was against me and life was so hard. If I had only known, right? When you're in the midst of something, it's sometimes hard to see the larger picture. Same thing with depression. I've had times when it snuck in and clouded everything before I knew what was happening. I couldn't see that it was a temporary situation. I just felt like at that point everything was over. Nothing else could make a difference. Other times, depression came down on me like a weight. I could literally feel something pushing down on me, making me feel like it was just pointless to do anything but walk away. Those episodes really scare me because my thoughts go into those very dark places. Sometimes I know what triggers the episodes and sometimes I have no clue whatsoever what happened. I know what has made me feel down this week. Not only has the weather been grey and gloomy here, but it's also been a week where my pain levels have been high. I also have been thinking of a very close friend who passed away just 2 years ago. She had RA but we shared a lot with each other over the 6 plus years that I knew her. In fact, I often call her my "second mom" as she would give me advice and guidance when I needed it most. Yes, often when I didn't ask for it. She just knew.
It's also coming up on the five year anniversary of my brother's death. Bill was just barely a teenager when he was diagnosed with Systemic lupus erythematosus. Unfortunately the disease chose to reside within his lungs. When he would have a flare, the lungs would rip apart and bleed. Basically he would be drowning on his own blood. Between the ages of 15 and 26, Bill was on life support over 19 times, had countless blood transfusions, and spent a large chunk of his life lying in a hospital bed. But (yes, yes, another but) he rarely lost his smile. He always seemed to have a joke or two ready to make another person smile instead of dwelling on his own pain. Even he had bouts of depression. There were a few times when he did throw his hands up and ask the very same questions I tend to ask today. Why do I have to go through this? What did I do to deserve a lifetime of pain, limits and frustrations? Is there anything out there that I can do now that I have lost who I was?
It took a while but he would come around and smile again. He would try to make up for the worry he caused even though he was told repeatedly that it wasn't necessary. We worry because we love. I try to follow his example in dealing with my bouts of depression. I let myself feel, rant, rave and cry. Then I take a deep breath and take that first step forward. Sometimes it's easy. Other times I can't seem to make my foot move. I have learned to reach out and lean on those around me who I trust. For me, focusing on a task that's simple and repetitive for a short amount of time can help draw my mind from the worries. If pain is making it difficult, I will try to lose myself in a book or with some mind-numbing tv shows. Anything to keep my brain from constantly focusing on whatever it is that has triggered the depression. This isn't something I learned quickly. It's taken a long time to redirect myself. Truthfully, there are times when it doesn't work as well as I want it to. But if I want to not take medication, I have to be gentle with myself and try my hardest.
So this week I have been working more on crochet projects and reading when I'm not checking in with my Facebook group or playing at Pogo. I know I'll make it through this bout and be ready to enjoy the good times. What are some things you, my readers, do to battle your depression? Either way, be gentle with yourself. Give yourself room to go through that dark valley because the light will come soon enough. Remember that you're never alone.
Until next time,
Kay
Quote of the Day
Although the world is full of suffering, it is also full of the overcoming of it.
~ Helen Keller
Wednesday, September 28, 2011
And the Doctor Said....
Words. Just kidding.
I did go to the rheumatologist on Monday. We talked about how I was doing. While he was happy that nothing has gotten worse for me, he was hoping that things had improved. They didn't so I have things I need to work on such as getting more exercise, losing weight, blah, blah and blah. It's everything that I had been working on but stopped because I honestly was mega-depressed a few months ago. I'm not completely out of the depressed boat but I am working on it. We did the blood work but no x-rays this round. All in all, it was a good visit and I hope to improve before I see him again.
After the last couple of days, I've been doing some thinking about, well, everything. In going through all that I have wrong with me and trying to relate it to others through this blog, I have nudged some sleeping giants awake and they're not happy about it. Having an invisible illness of any kind will take a toll on the person. I don't care whether it's diabetes, lupus or PsA. You are being told by a medical professional that you have a disease that will limit you in so many ways or will take actions away from you. Yet, you look in the mirror and see that nothing's wrong with you on the outside. You look like the same as you were before you left for the doctor. Between that and hearing criticism from the people around you, is it any wonder why a person would feel as though their life sucked?
Thank goodness for the internet! In the past few years, there has been such an increase in the number of support groups, forums and even Facebook groups for people with any illness, injury or need. With the advancements in technology and the increased ease of getting online, reaching out to someone when you need them is so easy. I honestly remember feeling like I was all alone when I was first diagnosed back in the early 2000s. I didn't know a single person around me or anywhere close to me that had the same disease. I only knew people who had something similar. My grandma had arthritis in her hands. My brother, Bill, had lupus so we had a deeper bond based on invisible illnesses. These were the only people I could talk to outside of my doctor who understand a little of what I was going through. I felt so isolated and needed assurance that I wasn't the only out there, that I wasn't that rare.
After doing a bunch of searches on the internet, I came across a Yahoo! group that was at its heart a support group for people who were diagnosed or had symptoms similar to PsA. There aren't enough words to explain how deeply relieved I felt. Here was a group of about 20 people (20!!) who knew my pains and frustrations and who could lift me up when I needed it most as I tried to do the same for them. Imagine my surprise when I learned that there were people all over the world who have PsA and related diseases. I grew very close to quite a few of those people. Although I'm not very active in the group today, I do still keep the members in my thoughts and prayers. I have found a number of different forums (some unfortunately have closed) where members share my pain, frustrations and tears. It's been such a pleasure (in a weird sense) to find others out there. Of course, I can't forget about Facebook. That has allowed me to really connect with people all over who has PsA, Fibro, pulmonary emboli, etc. All you have to do is type what you're looking for into the search bar and presto! So many pages pop up for you! In this day and age, there's no reason to feel as though you are the only going through a tough time with your disease. Through the internet, it's possible to find someone to talk to at any hour of the day or night.
I'm grateful to have made the close PsA friends that I have. I'm excited to meet others although I'd wish painfree days for them all instead of this disease. Part of me is wondering what the next 10-15 years is going to bring. Maybe there will be a way to just press one button and be near the very person we're missing or need at that moment. Okay, maybe that's more Star Trek-y than I wanted but you get the idea. You may have an invisible illness. That does NOT make YOU invisible. We're out there waiting to help you down these roads. Reach out to someone whether here or through your doctor. These illnesses are definitely a bit easier to live through when you have a great support system. Just remember - You are not alone.
So, by now you've probably seen the quotes of the day. I'm going to make that a regular thing because I believe in the power of words. We all need a lift at times. This is just my way of helping however I can. I am planning on covering the other illnesses that I have in a few upcoming posts. There are a few in the works regarding some alternative treatments for PsA and Fibro. If there's anything you'd like to know more about or just general questions, please feel free to leave them in the comments. I'll answer them as best as I can. Thanks so much for taking the time to visit my blog!
Until next time,
Kay
I did go to the rheumatologist on Monday. We talked about how I was doing. While he was happy that nothing has gotten worse for me, he was hoping that things had improved. They didn't so I have things I need to work on such as getting more exercise, losing weight, blah, blah and blah. It's everything that I had been working on but stopped because I honestly was mega-depressed a few months ago. I'm not completely out of the depressed boat but I am working on it. We did the blood work but no x-rays this round. All in all, it was a good visit and I hope to improve before I see him again.
After the last couple of days, I've been doing some thinking about, well, everything. In going through all that I have wrong with me and trying to relate it to others through this blog, I have nudged some sleeping giants awake and they're not happy about it. Having an invisible illness of any kind will take a toll on the person. I don't care whether it's diabetes, lupus or PsA. You are being told by a medical professional that you have a disease that will limit you in so many ways or will take actions away from you. Yet, you look in the mirror and see that nothing's wrong with you on the outside. You look like the same as you were before you left for the doctor. Between that and hearing criticism from the people around you, is it any wonder why a person would feel as though their life sucked?
Thank goodness for the internet! In the past few years, there has been such an increase in the number of support groups, forums and even Facebook groups for people with any illness, injury or need. With the advancements in technology and the increased ease of getting online, reaching out to someone when you need them is so easy. I honestly remember feeling like I was all alone when I was first diagnosed back in the early 2000s. I didn't know a single person around me or anywhere close to me that had the same disease. I only knew people who had something similar. My grandma had arthritis in her hands. My brother, Bill, had lupus so we had a deeper bond based on invisible illnesses. These were the only people I could talk to outside of my doctor who understand a little of what I was going through. I felt so isolated and needed assurance that I wasn't the only out there, that I wasn't that rare.
After doing a bunch of searches on the internet, I came across a Yahoo! group that was at its heart a support group for people who were diagnosed or had symptoms similar to PsA. There aren't enough words to explain how deeply relieved I felt. Here was a group of about 20 people (20!!) who knew my pains and frustrations and who could lift me up when I needed it most as I tried to do the same for them. Imagine my surprise when I learned that there were people all over the world who have PsA and related diseases. I grew very close to quite a few of those people. Although I'm not very active in the group today, I do still keep the members in my thoughts and prayers. I have found a number of different forums (some unfortunately have closed) where members share my pain, frustrations and tears. It's been such a pleasure (in a weird sense) to find others out there. Of course, I can't forget about Facebook. That has allowed me to really connect with people all over who has PsA, Fibro, pulmonary emboli, etc. All you have to do is type what you're looking for into the search bar and presto! So many pages pop up for you! In this day and age, there's no reason to feel as though you are the only going through a tough time with your disease. Through the internet, it's possible to find someone to talk to at any hour of the day or night.
I'm grateful to have made the close PsA friends that I have. I'm excited to meet others although I'd wish painfree days for them all instead of this disease. Part of me is wondering what the next 10-15 years is going to bring. Maybe there will be a way to just press one button and be near the very person we're missing or need at that moment. Okay, maybe that's more Star Trek-y than I wanted but you get the idea. You may have an invisible illness. That does NOT make YOU invisible. We're out there waiting to help you down these roads. Reach out to someone whether here or through your doctor. These illnesses are definitely a bit easier to live through when you have a great support system. Just remember - You are not alone.
So, by now you've probably seen the quotes of the day. I'm going to make that a regular thing because I believe in the power of words. We all need a lift at times. This is just my way of helping however I can. I am planning on covering the other illnesses that I have in a few upcoming posts. There are a few in the works regarding some alternative treatments for PsA and Fibro. If there's anything you'd like to know more about or just general questions, please feel free to leave them in the comments. I'll answer them as best as I can. Thanks so much for taking the time to visit my blog!
Until next time,
Kay
Quote of the Day
Be patient with yourself. Self-growth is tender; it's holy ground. There's no greater investment.
~ Stephen Covey
Tuesday, September 27, 2011
My life before and with PsA
Long, long ago in a city not so far away, there lived a girl who dreamed of becoming a published author. She was constantly writing something or sitting with a book in her hands. It was a large part of her world. She had a family who loved and annoyed her (as they do). She had a million different hopes and aspirations. Deep down, she had the determination and stubbornness to not let anyone or anything get in her way.
One morning, she woke up feeling more tired than when she went to sleep the night before. She tried to get out of the bed but was knocked back down by a sudden, stabbing pain in her left foot. It shocked her that a pain could be that forceful. After a few tears and moments spent massaging her poor foot, she attempted to get out of bed. This time the pain wasn't as sharp but it was still there. Each bit of pressure she placed on it to stand made the pain intensify. Finally she had no choice but to get moving. Her responsibilities of the day depended on it. With tears in her eyes, she made her way to the bathroom and began to ready herself for the day.
Okay, that was a bit dramatic. I admit to taking some liberties with it but that is basically what happened to me. I can remember that I didn't feel good that entire week. Waking up for school, I felt like I hadn't even slept. I just wanted to fall back down, pull the covers over my head and sleep the whole day away. I did try to get out of bed only to feel a really sharp pain in my foot. Honestly, it felt like I had stepped on a piece of glass or something. I didn't have time to really sit there and think about it because I was already running late to get ready for school. It was my senior year and sooo much was happening that I didn't want to miss a second of it. I pushed myself to get ready and go even though I really didn't feel up to it. As the day went on, I felt a little better. I think getting my mind busy with school work and friends made a difference in how I felt at the time. The busier my mind was, the less of the pain I dwelt on.
The tiredness and the foot pain became a constant in my life from that moment on. Some days I would walk with a slight limp but I always pushed myself to make it through the day. My time in school was nearly finished. My home life was in upheaval because of my brother's lupus diagnosis. Oh, that came way out of left field. It completely turned our worlds upside down and inside out. I focused much of my energy on taking care of the small things for my parents so they could focus on my brother. Of course, in reality that meant that my other brother and I were put on the back burner. At the time, it was hurtful. Looking at the past with adult eyes has made me see that there really wasn't another path to take at the time. I can understand now what I couldn't then. The time between that first morning with the ache and pain and my graduation is pretty much a blur to me now. A lot of my memories are filed away and covered over thanks to what I call "Fibro fog". That's where I feel like..well, you know how sometimes you just know the name to something and it's right there on the tip of your tongue. You try to say it but it doesn't come right or doesn't come out at all. That's pretty much what happens to me.
Anyway, back to my life. Almost all of the joints were damaged gradually. I don't think there was a specific part of my body where one day I woke up to find it morphed into something full of arthritis. It always seemed to sneak in when I wasn't paying attention. Shortly after my left foot, I noticed some pain in the ring finger on my left hand. When that finger became deformed, I really began to pay attention to what I was going through. Then came the pains in the right foot. My emotional state was all mixed up. I couldn't understand why I was having to deal with this pain and the possibility of becoming deformed. My family was already going through enough with my brother. Why did I have to add to that?
As the years went by, I was becoming less and less able to do the things that I needed or wanted to do. I got a lot of flack over the years from family and friends that just didn't seem to understand. Yeah, I was 19 or 20 but inside I felt like I was 60. Moving hurt and moving fast hurt even worse. I got heckled whenever it would take me a while to complete something like putting away inventory at work or not having dishes done at home. No one seemed to understand that I just couldn't do it. I was told that I was lazy, that I was faking just to get out of doing something, that there was no way I was hurting as bad as I said I was and that I needed to just deal with things because life wasn't going to just stop for me whenever I didn't feel good. There were so many times when I wanted to just lash out, cause some sort of physical harm to people just so they could understand the pain I was feeling inside. But these were my elders, the people I was taught from a small child to respect and not contradict. So I felt like crap instead. Looking back, I know that they didn't understand and they were doing or saying what they thought was right. Truthfully, it still hurt.
The normal life I knew as a child is gone now. It has been gone for many years. I don't remember what it's like to run anymore. I know I did it when I was little. I know that I played baseball, tag and played all those games that children play. There were even a few made up games that I sort of remember. You know, the kind where you make up the rules as you go along. I don't remember what it's like to have only an hour to get to work and still need to shower, dress, and be out the door. I don't remember what it's like to hold my hubby's hand without my fingers cramping or have his arm around my shoulders without it feeling like a 1-ton weight. That life is over for me.
I truly didn't expect to be reliving all these things when I set out to write this blog. I really just wanted a place to connect with people who are going through the same things I am. Remembering (or trying to remember) my life has forced me to see how precious those moments where I feel good really are. I no longer take for granted the little achievements like opening a jar on my own or washing my own hair. Sad to think that at 30-something, those are among the great moments. It also frustrates me when I see others throwing their lives away and not realizing how awesome they have it. But (always a but) I still wouldn't trade my life. Even with all the pain and suckiness, it's mine and it's taught me to enjoy life moment by moment. It has even given me some of the best friends I could ever have found. Because we know each other's pain, we can love and share honestly.
Someone I love deeply told me once that you have a choice when you wake up. You can either smile or frown. Smile no matter what and your day will be filled with happy moments. Frown and you'll miss the good things along the way. It's up to you.
Until next time,
Kay
One morning, she woke up feeling more tired than when she went to sleep the night before. She tried to get out of the bed but was knocked back down by a sudden, stabbing pain in her left foot. It shocked her that a pain could be that forceful. After a few tears and moments spent massaging her poor foot, she attempted to get out of bed. This time the pain wasn't as sharp but it was still there. Each bit of pressure she placed on it to stand made the pain intensify. Finally she had no choice but to get moving. Her responsibilities of the day depended on it. With tears in her eyes, she made her way to the bathroom and began to ready herself for the day.
Okay, that was a bit dramatic. I admit to taking some liberties with it but that is basically what happened to me. I can remember that I didn't feel good that entire week. Waking up for school, I felt like I hadn't even slept. I just wanted to fall back down, pull the covers over my head and sleep the whole day away. I did try to get out of bed only to feel a really sharp pain in my foot. Honestly, it felt like I had stepped on a piece of glass or something. I didn't have time to really sit there and think about it because I was already running late to get ready for school. It was my senior year and sooo much was happening that I didn't want to miss a second of it. I pushed myself to get ready and go even though I really didn't feel up to it. As the day went on, I felt a little better. I think getting my mind busy with school work and friends made a difference in how I felt at the time. The busier my mind was, the less of the pain I dwelt on.
The tiredness and the foot pain became a constant in my life from that moment on. Some days I would walk with a slight limp but I always pushed myself to make it through the day. My time in school was nearly finished. My home life was in upheaval because of my brother's lupus diagnosis. Oh, that came way out of left field. It completely turned our worlds upside down and inside out. I focused much of my energy on taking care of the small things for my parents so they could focus on my brother. Of course, in reality that meant that my other brother and I were put on the back burner. At the time, it was hurtful. Looking at the past with adult eyes has made me see that there really wasn't another path to take at the time. I can understand now what I couldn't then. The time between that first morning with the ache and pain and my graduation is pretty much a blur to me now. A lot of my memories are filed away and covered over thanks to what I call "Fibro fog". That's where I feel like..well, you know how sometimes you just know the name to something and it's right there on the tip of your tongue. You try to say it but it doesn't come right or doesn't come out at all. That's pretty much what happens to me.
Anyway, back to my life. Almost all of the joints were damaged gradually. I don't think there was a specific part of my body where one day I woke up to find it morphed into something full of arthritis. It always seemed to sneak in when I wasn't paying attention. Shortly after my left foot, I noticed some pain in the ring finger on my left hand. When that finger became deformed, I really began to pay attention to what I was going through. Then came the pains in the right foot. My emotional state was all mixed up. I couldn't understand why I was having to deal with this pain and the possibility of becoming deformed. My family was already going through enough with my brother. Why did I have to add to that?
As the years went by, I was becoming less and less able to do the things that I needed or wanted to do. I got a lot of flack over the years from family and friends that just didn't seem to understand. Yeah, I was 19 or 20 but inside I felt like I was 60. Moving hurt and moving fast hurt even worse. I got heckled whenever it would take me a while to complete something like putting away inventory at work or not having dishes done at home. No one seemed to understand that I just couldn't do it. I was told that I was lazy, that I was faking just to get out of doing something, that there was no way I was hurting as bad as I said I was and that I needed to just deal with things because life wasn't going to just stop for me whenever I didn't feel good. There were so many times when I wanted to just lash out, cause some sort of physical harm to people just so they could understand the pain I was feeling inside. But these were my elders, the people I was taught from a small child to respect and not contradict. So I felt like crap instead. Looking back, I know that they didn't understand and they were doing or saying what they thought was right. Truthfully, it still hurt.
The normal life I knew as a child is gone now. It has been gone for many years. I don't remember what it's like to run anymore. I know I did it when I was little. I know that I played baseball, tag and played all those games that children play. There were even a few made up games that I sort of remember. You know, the kind where you make up the rules as you go along. I don't remember what it's like to have only an hour to get to work and still need to shower, dress, and be out the door. I don't remember what it's like to hold my hubby's hand without my fingers cramping or have his arm around my shoulders without it feeling like a 1-ton weight. That life is over for me.
I truly didn't expect to be reliving all these things when I set out to write this blog. I really just wanted a place to connect with people who are going through the same things I am. Remembering (or trying to remember) my life has forced me to see how precious those moments where I feel good really are. I no longer take for granted the little achievements like opening a jar on my own or washing my own hair. Sad to think that at 30-something, those are among the great moments. It also frustrates me when I see others throwing their lives away and not realizing how awesome they have it. But (always a but) I still wouldn't trade my life. Even with all the pain and suckiness, it's mine and it's taught me to enjoy life moment by moment. It has even given me some of the best friends I could ever have found. Because we know each other's pain, we can love and share honestly.
Someone I love deeply told me once that you have a choice when you wake up. You can either smile or frown. Smile no matter what and your day will be filled with happy moments. Frown and you'll miss the good things along the way. It's up to you.
Until next time,
Kay
Quote of the Day
One day at a time - this is enough. Do not look back and grieve over the past, for it is gone: and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful that it will be worth remembering.
~ Ida Scott Taylor
Monday, September 26, 2011
My pet, my motivation.
Today is one of those half and half days. I do have the stiffness and overall achy feeling that is common for me in the fall months. I feel a bit of energy but I know that most of it is going to be spent getting ready to see my rheumatologist. I feel like it's a big ordeal and would so much love to just be able to do a phone appointment. I'd be like, "Yes, I'm still having trouble with this and this. X-rays? Don't need no stinking x-rays. Eww, blood work? Nah..okay then. Thanks for phoning in my meds and I'll speak to you in six months."
Unfortunately, it doesn't work that way. Since PsA and Fibro work on the inside, there's not really much that he can just take my word for. So, no matter how awful I feel, I make myself go to the rheumy. It also helps that it's only every six months unless I have a lot of trouble with a particular joint. Then I pop in there but I tend to avoid doctors and reschedule for a number of reasons. One time I did talk to a therapist about it. She seemed to think seeing what my brother went through with his lupus and then my beginnings with PsA scarred me. I'd have to say she's probably right on the money with that one. I won't lie and say that there aren't days when I don't even want to get out of bed. Truth is, there are many days that I feel that way. The only reason I get up some mornings or do anything is because my dog, Patches, depends on me.
Even without scientific study data, I know from personal experience that my dog has made an extremely awful and painful day seem less of a burden. Somehow he senses that I'm not feeling at my best and he doesn't leave my side. If it's a particularly bad day, he'll lay beside me. He's like a little heater at times. When I lay on my side and he snuggles in the crook of my legs, it feels like a heating pad against my knees. I can be bawling my eyes out one minute and soothed the next by his lying next to me. Sometimes all I can bear to feel is the softness of his fur.
Patches gives me unconditional love and understanding. He doesn't give me scornful or skeptical looks whenever I say that I feel like a 100 ton mack truck ran me over, backed up and parked on top of me for 12 hours. He doesn't call shenanigans on me when I say I can't do a simple task like opening mail or letting him outside. He understands that I have days where he has to be inside with me (and yes, he's trained to go on his potty pads on those days). Most of all, he will sit by me and lick my hands when the pain gets to be too much. Yes, he does make me get up and move to get his food. He does make me play with him or pet him when he feels that he needs an attention fix. But he also will play quietly on the floor by my feet or beside me on the couch/bed whenever I can't do much. He's such a smart little guy.
Truth be told, he knows more of my deepest hurts than anyone close to me. I can tell him that I feel like I want to die on my bad days. He won't patronize me or berate me for thinking that way. He'll just let me get things off my chest and then I feel better. I honestly don't know what I'd do without the little one around. He makes me laugh, smile and happy when he does silly things. I don't think I can imagine life without him or any pet around for that matter. Whether it's a cat, dog, fish, bird or even snake, I believe that pets can bring us out of our funks and help us to maintain a positive outlook through the bleakest of times. I wholeheartedly would recommend having a pet or visiting with someone who does have one on occasion. If you can't, just go to youtube and watch some of the millions of pet videos that have been uploaded. Your heart will most definitely be lifted.
As for me, it's time to get ready for the doctor. And yes, I'm putting on my sunscreen. May each of you find a bit of joy in the day.
Until next time,
Kay
Unfortunately, it doesn't work that way. Since PsA and Fibro work on the inside, there's not really much that he can just take my word for. So, no matter how awful I feel, I make myself go to the rheumy. It also helps that it's only every six months unless I have a lot of trouble with a particular joint. Then I pop in there but I tend to avoid doctors and reschedule for a number of reasons. One time I did talk to a therapist about it. She seemed to think seeing what my brother went through with his lupus and then my beginnings with PsA scarred me. I'd have to say she's probably right on the money with that one. I won't lie and say that there aren't days when I don't even want to get out of bed. Truth is, there are many days that I feel that way. The only reason I get up some mornings or do anything is because my dog, Patches, depends on me.
Even without scientific study data, I know from personal experience that my dog has made an extremely awful and painful day seem less of a burden. Somehow he senses that I'm not feeling at my best and he doesn't leave my side. If it's a particularly bad day, he'll lay beside me. He's like a little heater at times. When I lay on my side and he snuggles in the crook of my legs, it feels like a heating pad against my knees. I can be bawling my eyes out one minute and soothed the next by his lying next to me. Sometimes all I can bear to feel is the softness of his fur.
Patches gives me unconditional love and understanding. He doesn't give me scornful or skeptical looks whenever I say that I feel like a 100 ton mack truck ran me over, backed up and parked on top of me for 12 hours. He doesn't call shenanigans on me when I say I can't do a simple task like opening mail or letting him outside. He understands that I have days where he has to be inside with me (and yes, he's trained to go on his potty pads on those days). Most of all, he will sit by me and lick my hands when the pain gets to be too much. Yes, he does make me get up and move to get his food. He does make me play with him or pet him when he feels that he needs an attention fix. But he also will play quietly on the floor by my feet or beside me on the couch/bed whenever I can't do much. He's such a smart little guy.
Truth be told, he knows more of my deepest hurts than anyone close to me. I can tell him that I feel like I want to die on my bad days. He won't patronize me or berate me for thinking that way. He'll just let me get things off my chest and then I feel better. I honestly don't know what I'd do without the little one around. He makes me laugh, smile and happy when he does silly things. I don't think I can imagine life without him or any pet around for that matter. Whether it's a cat, dog, fish, bird or even snake, I believe that pets can bring us out of our funks and help us to maintain a positive outlook through the bleakest of times. I wholeheartedly would recommend having a pet or visiting with someone who does have one on occasion. If you can't, just go to youtube and watch some of the millions of pet videos that have been uploaded. Your heart will most definitely be lifted.
As for me, it's time to get ready for the doctor. And yes, I'm putting on my sunscreen. May each of you find a bit of joy in the day.
Until next time,
Kay
Quote of the Day
"The manner in which one endures what must be endured is more important than the thing that must be endured.”
~ Dean Acheson
Sunday, September 25, 2011
DMARTIANS??? Where?
Finding it really hard to be goofy today. The weather's been grey and gloomy with small bursts of sunlight. Not that I get to enjoy that anyway. Still, with Fall officially upon us here in the USA, the cold temps have been a pain (literally) for me the past few days. Good thing I have been doing research when I can. Today is going to be filled with some rest and possibly some crochet. Going to just see what happens.
Previously on Stepping Stones, we talked about one set of medicines used to help people like me battle our psoriatic arthritis. Today's focus will be on DMARDS. Yep, another acronym of a big long name. You would also guess correctly that I'll be using the abbreviated version throughout the post. DMARDS actually stands for disease-modifying antirhematic drugs. Most often these are given to people who have not responded well to NSAIDS and need more help in slowing or stopping joint and tissue damage. They can relieve severe symptoms and possibly slow the progression of PsA. DMARDS are also used in the treatments of other diseases including rheumatoid arthritis, lupus, ankylosing spondylitis and other related diseases.
Since DMARDS are considered to be a second line of defense in the treatment of PsA, they are sometimes used in combination with other types of medications. If you have been taking an NSAID for a long time and the dose in consistently being upped as I had happen in the past, then it's probable that your doctor will consider adding a DMARD to help fight the PsA and bring the doses down to a safer level. DMARDS are not something that will act quickly in releiveing your pain or stiffness. These drugs can take a period of time such as a few weeks to months to actually show results. That's another reason why they are used with other medications.
DMARDS don't act like the NSAIDS when helping to deal with PsA or alike diseases because they aren't designed to do battle with the enzymes that help create inflammation. These types of drugs actually work to modify or change the immune system's response to the increased inflammation. In same cases, the immune system is actually suppressed by the medication. That's why I can't stress the importance of being open with your doctor when going through these treatments. Something as simple as the common cold could spell big trouble for someone who has little to no immune system. I kinda feel that when you reach this level, it's not a time to play around with the medications or the doctor visits. It's your health at stake.
Now, there are some medications that fall squarely in the DMARDS category. There are also drugs that can be put in the category but also have a category all their own. Welcome to the world of Biologics. Having come into use recently (and by recently, I'm talking within the last 15 years), these drugs help to calm the immune system's signals that ultimately lead to joint damage. Because they are newer, there isn't a lot of data on the long-term use or side effects. Biologics are thought to have fewer side effects than the standard DMARDS treatments. However, they have been show to really help improve the lives of people living with an auto-immune or rheumatoid condition such as PsA or severe rheumatoid arthritis. Once again, it comes down to speaking with your doctor and weighing all your options before beginning any course of treatment.
Each of the medications carry their own side effects but I have noticed some that are common with all of them. Some of the lesser side effects include stomach upset, nasusea, diarrhea, skin rashes (not your psoriasis), temporary hair loss, and blood issues such as thinning or low white blood counts. There are some really bad ones too. I mean really scary side effects that I, myself, have experienced. You have to make sure to get your regular blood work done when on these medicines. Some of the more serious side effects include liver toxicity, liver damage, discoloration of urine/tears/sweat, problems with the pressure of your eyes, infections, and sometimes shortness of breath. Any of these symptoms should be reported right away. If you feel you're unable to wait to see your doctor, you should visit your local hospital.
Which medications fall under the DMARDS or biologic headers? I have a small list ready for you. Some you may have heard of and others may surprise you. A number of the medications were designed for use in treating other diseases such as cancer or malaria. They have been shown to help patients like us.
I had been on Methotrexate (MTX) but unfortunately, I wasn't monitored very well. I ended up with liver damage that sent me to a new doctor and then on to a rheumatologist. I had to let my liver heal before pursuing another treatments. I'm very thankful that the liver can heal itself. Honestly, if it was another organ, I'd probably not be here. I was placed on NSAIDS for a bit and then we tried Enbrel. That became my miracle. I was able to move so well with a lot less stiffness. Too bad I went and had a blood clot in my lung. I had to stop the Enbrel and other medications because the doctors couldn't find the cause of the blood clot at the time. Through some investigating, we've discovered that I have a disease that makes the blood "sticky" so it is easier to develop clots. My rheumy and I have been talking about going back on the Enbrel. Right now, I don't know that it's feasible given my current financial situation. But I didn't have that many side effects while on the Enbrel. I had the injection site redness and some tummy upset but not much else.
Right now I'm currently taking the Salsalate (NSAID) alongside Hydroxychloroquine (Plaquenil). Since I've been on the Plaquenil for a couple of years now, I do see some relief but I've had to go through some side effects that I hadn't counted on as well. My hair has been thinning since about a month after I began the med. I still find more strands on my pillow or in my brush each day. It leaves me feeling very self-conscious because I already have the psoriasis on my scalp. If I went bald...oh geez, that would be horrible to consider. I have recently developed an intense sensitivity to sunlight. Just the other day, I stood in my doorway to talk with my neighbor for about ten minutes or so. A few hours later, I had welts on my arms and began to itch like crazy. Thank goodness for Benadryl. So now it's go nowhere near sunlight without my sunscreen. My doctor has me going for eye tests each year so that we can make sure all is well with my eyes.
What this all boils down to is pretty much what I have been saying repeatedly the last couple of posts. These medications can help you live a "normal" life. You can do so many things when you are able to find the right combination that works for YOU. Just because someone had a bad experience with a drug does not mean it will happen to you. Keeping yourself open to all remedies can help you find the right ones. Just be open and honest with yourself and your doctor. With the advancements in just the past ten years alone, I'm excited to see what happens in the next ten years. Maybe one day, we'll have a pill that takes care of it all. So hang in there. Keep a record of what you feel and talk to your doctor about everything.
Until next time,
Kay
Previously on Stepping Stones, we talked about one set of medicines used to help people like me battle our psoriatic arthritis. Today's focus will be on DMARDS. Yep, another acronym of a big long name. You would also guess correctly that I'll be using the abbreviated version throughout the post. DMARDS actually stands for disease-modifying antirhematic drugs. Most often these are given to people who have not responded well to NSAIDS and need more help in slowing or stopping joint and tissue damage. They can relieve severe symptoms and possibly slow the progression of PsA. DMARDS are also used in the treatments of other diseases including rheumatoid arthritis, lupus, ankylosing spondylitis and other related diseases.
Since DMARDS are considered to be a second line of defense in the treatment of PsA, they are sometimes used in combination with other types of medications. If you have been taking an NSAID for a long time and the dose in consistently being upped as I had happen in the past, then it's probable that your doctor will consider adding a DMARD to help fight the PsA and bring the doses down to a safer level. DMARDS are not something that will act quickly in releiveing your pain or stiffness. These drugs can take a period of time such as a few weeks to months to actually show results. That's another reason why they are used with other medications.
DMARDS don't act like the NSAIDS when helping to deal with PsA or alike diseases because they aren't designed to do battle with the enzymes that help create inflammation. These types of drugs actually work to modify or change the immune system's response to the increased inflammation. In same cases, the immune system is actually suppressed by the medication. That's why I can't stress the importance of being open with your doctor when going through these treatments. Something as simple as the common cold could spell big trouble for someone who has little to no immune system. I kinda feel that when you reach this level, it's not a time to play around with the medications or the doctor visits. It's your health at stake.
Now, there are some medications that fall squarely in the DMARDS category. There are also drugs that can be put in the category but also have a category all their own. Welcome to the world of Biologics. Having come into use recently (and by recently, I'm talking within the last 15 years), these drugs help to calm the immune system's signals that ultimately lead to joint damage. Because they are newer, there isn't a lot of data on the long-term use or side effects. Biologics are thought to have fewer side effects than the standard DMARDS treatments. However, they have been show to really help improve the lives of people living with an auto-immune or rheumatoid condition such as PsA or severe rheumatoid arthritis. Once again, it comes down to speaking with your doctor and weighing all your options before beginning any course of treatment.
Each of the medications carry their own side effects but I have noticed some that are common with all of them. Some of the lesser side effects include stomach upset, nasusea, diarrhea, skin rashes (not your psoriasis), temporary hair loss, and blood issues such as thinning or low white blood counts. There are some really bad ones too. I mean really scary side effects that I, myself, have experienced. You have to make sure to get your regular blood work done when on these medicines. Some of the more serious side effects include liver toxicity, liver damage, discoloration of urine/tears/sweat, problems with the pressure of your eyes, infections, and sometimes shortness of breath. Any of these symptoms should be reported right away. If you feel you're unable to wait to see your doctor, you should visit your local hospital.
Which medications fall under the DMARDS or biologic headers? I have a small list ready for you. Some you may have heard of and others may surprise you. A number of the medications were designed for use in treating other diseases such as cancer or malaria. They have been shown to help patients like us.
- Methotrexate
- Sulfasalazine
- Hydroxychloroquine
- Cyclosporine
- Enbrel
- Humira
- Orencia
- Rituxan
- Gold
I had been on Methotrexate (MTX) but unfortunately, I wasn't monitored very well. I ended up with liver damage that sent me to a new doctor and then on to a rheumatologist. I had to let my liver heal before pursuing another treatments. I'm very thankful that the liver can heal itself. Honestly, if it was another organ, I'd probably not be here. I was placed on NSAIDS for a bit and then we tried Enbrel. That became my miracle. I was able to move so well with a lot less stiffness. Too bad I went and had a blood clot in my lung. I had to stop the Enbrel and other medications because the doctors couldn't find the cause of the blood clot at the time. Through some investigating, we've discovered that I have a disease that makes the blood "sticky" so it is easier to develop clots. My rheumy and I have been talking about going back on the Enbrel. Right now, I don't know that it's feasible given my current financial situation. But I didn't have that many side effects while on the Enbrel. I had the injection site redness and some tummy upset but not much else.
Right now I'm currently taking the Salsalate (NSAID) alongside Hydroxychloroquine (Plaquenil). Since I've been on the Plaquenil for a couple of years now, I do see some relief but I've had to go through some side effects that I hadn't counted on as well. My hair has been thinning since about a month after I began the med. I still find more strands on my pillow or in my brush each day. It leaves me feeling very self-conscious because I already have the psoriasis on my scalp. If I went bald...oh geez, that would be horrible to consider. I have recently developed an intense sensitivity to sunlight. Just the other day, I stood in my doorway to talk with my neighbor for about ten minutes or so. A few hours later, I had welts on my arms and began to itch like crazy. Thank goodness for Benadryl. So now it's go nowhere near sunlight without my sunscreen. My doctor has me going for eye tests each year so that we can make sure all is well with my eyes.
What this all boils down to is pretty much what I have been saying repeatedly the last couple of posts. These medications can help you live a "normal" life. You can do so many things when you are able to find the right combination that works for YOU. Just because someone had a bad experience with a drug does not mean it will happen to you. Keeping yourself open to all remedies can help you find the right ones. Just be open and honest with yourself and your doctor. With the advancements in just the past ten years alone, I'm excited to see what happens in the next ten years. Maybe one day, we'll have a pill that takes care of it all. So hang in there. Keep a record of what you feel and talk to your doctor about everything.
Until next time,
Kay
Saturday, September 24, 2011
M-m-m-medicate!
Since I was diagnosed with PsA and other diseases, I've been on a revolving series of medications. It's only been within the last three or four years that I have had a steady list to go by daily. I've had some that did a wonderful job at eliminating pain and others that only seemed to work for a couple of weeks before the pain settled back into the old joints. From the beginning of my PsA journey, I've been on and off some of the popular brand medications. There are a few that now have generics. But some like Enbrel and Humira don't have generics and can be quite expensive.
Since there are several different types of medication that can be used, I decided to break it up in a series of posts. This post will cover the more commonly used medications known as NSAIDS. Now NSAIDS is a lot easier to say its full name. In reality, NSAIDS stands for nonsteroidal anti-inflammatory drugs. See? Told you the acronym was easier. And because of that fact, I'll be using them from this moment onward. Let's talk about NSAIDS, baby.
Now, I think that in today's society, we're more familiar with NSAIDS than we think. Many over-the-counter medications including aspirin and ibuprofen are considered to be NSAIDS. The basic job of these drugs would be to help decrease the amount of inflammation, joint pain and stiffness a person feels. Many doctors recommend or prescribe these medications to treat various forms of arthritis, headaches, menstrual pain and injuries where inflammation and pain are present. There are many people living with PsA who can control their disease with these drugs. Even though they don't do much to control the psoriasis of a PsA sufferer, NSAIDS do work to lower the inflammation which can help a person increase their daily activities and even their range of motion. How does it lower inflammation?
Well, your body's cells produce a family of chemicals called prostaglandins. These guys have some important work to do in the body - even if they do make it tough for PA sufferers. Despite the fact that they promote inflammation, pain and fever, they also help the blood's platelets to clot and help protect our stomach lining against acid damage. Over a long period of time at a high dose, these medications can wear away at your stomach and create ulcers. That's why prolonged use of NSAIDS are best monitored under doctor's care. It's also a very wise decision to make your doctor aware of all medications and any over-the-counter medications you may be taking such as vitamins, supplements and pain relievers. There are some dangerous drug interactions that can very well be fatal. It's always important to know all the pieces of the puzzle before adding something new. Below is a list of some medications that are in the NSAID category.
These are just a few of the more common NSAIDS that are available. The last three, Celebrex, Vioxx, and Bextra, are also known as COX-2 inhibitors due to the enzyme they block in the body to reduce pain and inflammation. They are thought to be easier on the stomach while provided the same relief as other NSAIDS. In recent years, there have been scientific studies that have shown long-term use of high doses of COX-2 inhibitors can cause problems with the heart and stricter label guidelines were enforced by the FDA. Each of the NSAIDS do carry the possibility of side effects. Not everyone will experience them so it's important to be open with your doctor when it comes to your medication and how it makes YOU feel.
Most people who take these medications long-term can have some degree of stomach upset including heartburn and ulcers. The most common remedy is to take the medication during or just after a meal so that there is something between your stomach and the medication. Drinking a glass of milk when taking the medication can also help ease the discomfort. However if it persists or the pain becomes worse, you should seek medical treatment as it can mean a more severe reaction. Some elderly patients and patients with severe illness can have swelling of the face, feet or lower limbs. If this happens, you should tell your doctor as soon as possible. Because the NSAIDS do affect the blood, there is also the possibility that the blood will lose some ability to clot. It's definitely important to tell your doctor if you're taking an aspirin regimen before starting an NSAID or tell your surgeon before having any surgery.
I have been on a few of the medications listed above with different levels of results. Most of them did okay for a while but never lasted long enough for me to gain what I thought would be my life back. Voltaren is really the only one listed that I had any degree of a normal life with. I do remember being able to actually jog without pain for the first time in five years. Unfortunately due to recent health problems, I can no longer take that medication. So I am currently taking a drug called Salsalate. It's an older arthritis medication but it's one that has the least probability of me bleeding to death since I also take blood thinners. Some days I can tell it's working and some days I don't think it's doing anything at all. Some days I wish I could go back to the Voltaren and be normal. Oh, who am I kidding? I'd never be normal even on Voltaren.
The main thing is to discuss your options with your doctor. Be open about your goals and what your options include. Your treatment is up to you. Be empowered and make the best informed decision alongside your doctor.
Until next time,
Kay
Since there are several different types of medication that can be used, I decided to break it up in a series of posts. This post will cover the more commonly used medications known as NSAIDS. Now NSAIDS is a lot easier to say its full name. In reality, NSAIDS stands for nonsteroidal anti-inflammatory drugs. See? Told you the acronym was easier. And because of that fact, I'll be using them from this moment onward. Let's talk about NSAIDS, baby.
Now, I think that in today's society, we're more familiar with NSAIDS than we think. Many over-the-counter medications including aspirin and ibuprofen are considered to be NSAIDS. The basic job of these drugs would be to help decrease the amount of inflammation, joint pain and stiffness a person feels. Many doctors recommend or prescribe these medications to treat various forms of arthritis, headaches, menstrual pain and injuries where inflammation and pain are present. There are many people living with PsA who can control their disease with these drugs. Even though they don't do much to control the psoriasis of a PsA sufferer, NSAIDS do work to lower the inflammation which can help a person increase their daily activities and even their range of motion. How does it lower inflammation?
Well, your body's cells produce a family of chemicals called prostaglandins. These guys have some important work to do in the body - even if they do make it tough for PA sufferers. Despite the fact that they promote inflammation, pain and fever, they also help the blood's platelets to clot and help protect our stomach lining against acid damage. Over a long period of time at a high dose, these medications can wear away at your stomach and create ulcers. That's why prolonged use of NSAIDS are best monitored under doctor's care. It's also a very wise decision to make your doctor aware of all medications and any over-the-counter medications you may be taking such as vitamins, supplements and pain relievers. There are some dangerous drug interactions that can very well be fatal. It's always important to know all the pieces of the puzzle before adding something new. Below is a list of some medications that are in the NSAID category.
- Aspirin (Bayer, Bufferin, etc)
- Ibuprofen (Advil, Motrin, etc)
- Naproxen (Aleve, etc)
- Lodine
- Cataflam
- Mobic
- Relafin
- Arthrotec
- Voltaren
- Daypro
- Celebrex
- Vioxx
- Bextra
These are just a few of the more common NSAIDS that are available. The last three, Celebrex, Vioxx, and Bextra, are also known as COX-2 inhibitors due to the enzyme they block in the body to reduce pain and inflammation. They are thought to be easier on the stomach while provided the same relief as other NSAIDS. In recent years, there have been scientific studies that have shown long-term use of high doses of COX-2 inhibitors can cause problems with the heart and stricter label guidelines were enforced by the FDA. Each of the NSAIDS do carry the possibility of side effects. Not everyone will experience them so it's important to be open with your doctor when it comes to your medication and how it makes YOU feel.
Most people who take these medications long-term can have some degree of stomach upset including heartburn and ulcers. The most common remedy is to take the medication during or just after a meal so that there is something between your stomach and the medication. Drinking a glass of milk when taking the medication can also help ease the discomfort. However if it persists or the pain becomes worse, you should seek medical treatment as it can mean a more severe reaction. Some elderly patients and patients with severe illness can have swelling of the face, feet or lower limbs. If this happens, you should tell your doctor as soon as possible. Because the NSAIDS do affect the blood, there is also the possibility that the blood will lose some ability to clot. It's definitely important to tell your doctor if you're taking an aspirin regimen before starting an NSAID or tell your surgeon before having any surgery.
I have been on a few of the medications listed above with different levels of results. Most of them did okay for a while but never lasted long enough for me to gain what I thought would be my life back. Voltaren is really the only one listed that I had any degree of a normal life with. I do remember being able to actually jog without pain for the first time in five years. Unfortunately due to recent health problems, I can no longer take that medication. So I am currently taking a drug called Salsalate. It's an older arthritis medication but it's one that has the least probability of me bleeding to death since I also take blood thinners. Some days I can tell it's working and some days I don't think it's doing anything at all. Some days I wish I could go back to the Voltaren and be normal. Oh, who am I kidding? I'd never be normal even on Voltaren.
The main thing is to discuss your options with your doctor. Be open about your goals and what your options include. Your treatment is up to you. Be empowered and make the best informed decision alongside your doctor.
Until next time,
Kay
Friday, September 23, 2011
Labels.
I've been doing a bit of thinking about labels as of late. No, not the peel and stick variety that helps us stay organized (or that lies hidden in the bottom of our desk drawer). I'm talking about the labels that society at large tends to throw our way when we are diagnosed with a disease. The majority of our society likes to have things set up in nice, neat little packages. I honestly believe it's so that they can rationalize things that happen and can set themselves apart from the "bad" or abnormal. Unfortunately, illnesses like PsA or Fibromyalgia don't always leave calling cards or marks that can be seen. They are often times known as invisible illnesses for that reason. For many people, the pain they feel is all on the inside. They don't wear oxygen, casts or have bandages all over. They look like what society would envision normal people to be. There isn't a test out there that can determine what a person's pain level may be at that moment. I tend to think that's why many chronic illnesses are treated with such deep skepticism.
I still do remember being a teenager and waking up to pain in my feet. It took me a while to massage some of the stiffness out of my feet so that I could just go to the bathroom in the mornings. Back then, it was easy to push the pain aside after I began my day at school. There was a lot to see and do that kept my mind occupied. When school was over for me, I still had my job that kept me moving. Maybe that's why it took a while longer to really latch on to my joints. I made myself be on-the-go for a long time. All of a sudden when I turned 20, it seemed like everything went kaplooey. Seriously. Someone flipped a light switch or snapped their fingers. You get the idea. I went from being an average young adult who had the world in front of her to someone with a chronic disease. I was now part of a box labeled psoriatic arthritis. Whatever dreams and goals I had laid out for myself before the label where now shut off from me. At least, that's the way I felt back then.
Well, I shouldn't just leave it as "back then". Even as recently as yesterday, I've had to fight to keep that lid from closing me off from my dreams. It just seemed to snowball with that one label, the first label. I had a disease so of course, that meant I was sick. Since it was arthritis, I would become a cripple. Further down the line with the psoriasis and some people would think me to be a freak. When I crossed the line of cripple, I entered the box of being disabled. Oh, that's a huge one! For whatever reason, once that label of disabled hits you, your mind flips. Okay, mine did. As someone who valued doing things for herself and striving to be the best she could be, telling me I'm not able to do something any longer was a huge blow to my self confidence. I honestly began to doubt whether I was worth anything at all. Yes, even the thought that the world would be better off without me ran through my mind on many occasions. Still does every now and again when the pain becomes too great.
It took me a really long time to realize that just because I have these labels with a seemingly negative connotation, I'm still the person I was before I got sick. Deep down, I'm still the caring, loyal, annoying person in my family that will fight to the death for those I love. I am still a writer at heart though I may not be able to sit and write out a novel in one sitting anymore. I am still a daughter, a sister, a niece, a cousin, a wife, a friend and confidant. Having PsA and other diseases showed me that I've got other labels too. I'm a survivor. I'm an information warrior, a teacher. I am a living example of a disease (or host of diseases) that someone has studied only in a textbook. I bring the humanity and color to those disease definitions written in black and white. Today, I have reminded myself that I may wear the badge of PsA but I also wear so many others. PsA is a part of my life but I can choose to not make it my entire life.
Sounds so simple and yet it's the most difficult thing to do for me. I have a choice when I wake up. I can smile and face whatever life throws my way. Or I can frown and spend the day wondering what ifs to the point where I accomplish nothing at all. Either way, I'm still here. So to me, that means I have an opportunity to do something. And boy, am I going to do it! Even with the pain, remember that you are a person of value. You matter to someone. Find some small goal and go for it. One step at a time, one stone at a time. That way, the old label will wear itself away.
Until next time,
Kay
I still do remember being a teenager and waking up to pain in my feet. It took me a while to massage some of the stiffness out of my feet so that I could just go to the bathroom in the mornings. Back then, it was easy to push the pain aside after I began my day at school. There was a lot to see and do that kept my mind occupied. When school was over for me, I still had my job that kept me moving. Maybe that's why it took a while longer to really latch on to my joints. I made myself be on-the-go for a long time. All of a sudden when I turned 20, it seemed like everything went kaplooey. Seriously. Someone flipped a light switch or snapped their fingers. You get the idea. I went from being an average young adult who had the world in front of her to someone with a chronic disease. I was now part of a box labeled psoriatic arthritis. Whatever dreams and goals I had laid out for myself before the label where now shut off from me. At least, that's the way I felt back then.
Well, I shouldn't just leave it as "back then". Even as recently as yesterday, I've had to fight to keep that lid from closing me off from my dreams. It just seemed to snowball with that one label, the first label. I had a disease so of course, that meant I was sick. Since it was arthritis, I would become a cripple. Further down the line with the psoriasis and some people would think me to be a freak. When I crossed the line of cripple, I entered the box of being disabled. Oh, that's a huge one! For whatever reason, once that label of disabled hits you, your mind flips. Okay, mine did. As someone who valued doing things for herself and striving to be the best she could be, telling me I'm not able to do something any longer was a huge blow to my self confidence. I honestly began to doubt whether I was worth anything at all. Yes, even the thought that the world would be better off without me ran through my mind on many occasions. Still does every now and again when the pain becomes too great.
It took me a really long time to realize that just because I have these labels with a seemingly negative connotation, I'm still the person I was before I got sick. Deep down, I'm still the caring, loyal, annoying person in my family that will fight to the death for those I love. I am still a writer at heart though I may not be able to sit and write out a novel in one sitting anymore. I am still a daughter, a sister, a niece, a cousin, a wife, a friend and confidant. Having PsA and other diseases showed me that I've got other labels too. I'm a survivor. I'm an information warrior, a teacher. I am a living example of a disease (or host of diseases) that someone has studied only in a textbook. I bring the humanity and color to those disease definitions written in black and white. Today, I have reminded myself that I may wear the badge of PsA but I also wear so many others. PsA is a part of my life but I can choose to not make it my entire life.
Sounds so simple and yet it's the most difficult thing to do for me. I have a choice when I wake up. I can smile and face whatever life throws my way. Or I can frown and spend the day wondering what ifs to the point where I accomplish nothing at all. Either way, I'm still here. So to me, that means I have an opportunity to do something. And boy, am I going to do it! Even with the pain, remember that you are a person of value. You matter to someone. Find some small goal and go for it. One step at a time, one stone at a time. That way, the old label will wear itself away.
Until next time,
Kay
Thursday, September 22, 2011
Locked inside.
Taking a break from the information overload of the last two days. As I said, I know that the amount of information can be overwhelming. It is super important to get the knowledge out there but I don't want to bore you all away at the same time! So, I'll switch it up a little bit. Maybe a couple of informative posts a followed by a me post. How's that sound? Maybe we'll just let it flow and see what happens.
As the title states, I'm pretty much locked inside more often than I'd like. Not just because of the PsA. I have a few other diseases as well that limit what I can do and where I can go. Unfortunately, PsA was just the beginning of them. I was a regular teenager doing regular teenager stuff when I first starting feeling the pains and aches. That's when I started to slow down a little bit. Even before I turned 20, I had already stopped being able to just get up and go somewhere at a moment's notice. I began having to plan what I needed to do in order to go somewhere. It didn't seem to stop me from going places. I could get up and go if I pushed myself. However, I paid for it severely afterward with very swollen feet and hands.
Once it became apparent that I wouldn't be able to do as much as I once could, I began to see a rheumatologist. He is very warm and kind which helps when he has to deliver bad news. I'm also glad that he is very honest with me. He told me that there wasn't a cure for the PsA and that we would be able to stave off some of the joint destruction. But - yeah there's always a but - I probably wouldn't be able to stand for long periods of time or do much with my hands all at once anymore. That pretty much became the time when I had to start learning to limit myself as well as asking others for help. Now, anyone who knows me will tell you that I'm stubborn. (Shh! Mom, no comments from the peanut gallery.) It took an awful lot to ask others for help. Especially when you could see in their eyes that they thought you were faking a lot of the time. I'm not saying that I didn't have days where I just didn't want to do things. Most of the time, I really did need the help. It was pretty much the most humbling period of my life. Still is, to be very blunt.
Due to other diseases and medication changes, I have developed a sensitivity to the sun. In fact, I have to put on sunscreen before I can go out for even a few minutes or I get itchy welts and red spots similar to an allergic reaction. I usually have to take Benadryl in order to calm the itch and redness if I forget and go outside without the sunscreen. To go to a doctor's appointment or a simple family cookout takes planning. I have to have the clothes ready for the appointment, have help to get a shower the night before and make sure that I have my portable oxygen tank ready to be used. The day of the doctor's appointment (or get-together with friends, etc), I have to pace myself getting ready. I spend about an hour getting refreshed (teeth brushed, putting on deodorant, fixing my hair, etc) and then have to rest for a while. I haven't worn make-up in years because I usually don't have the strength or the energy to put it on. Then I change my clothes and put on my sunscreen. Slip on shoes have been my saving grace for the past five years. I've honestly worn the same pair of slip-ons for the past five years. I do have a pair of tennis shoes but I haven't worn them in a fairly long time as I can't tie the strings some days. On goes the oxygen tank and away I go!
Deep down, I want to be able to do more things, go out to more places, and just live my life. Right now, I don't think it's possible with everything that I have to deal with on a daily basis. Maybe that's just the walls closing around me a bit. I don't know for certain. It does seem that I live more online nowadays than in the past. Of course, there's Facebook and all its games. I've met some wonderful people on there that share this dreaded disease with me. I'm thankful that I was able to join a Yahoo! group made up of some amazing people who have PsA and Fibro as well. I also visit Pogo on occasion. Besides all that, I do try to keep busy when offline. To be honest, I can't just sit at the computer for hours on end as I was once able to do. Every hour or so, I have to get up and more or else I won't be able to move at all without severe pain. Some days an hour is pushing my limit. I taught myself how to crochet. Thanks to youtube and a wonderful woman named Teresa who makes crochet videos, I've been able to master some stitches that I thought impossible - even without PA. I also try to write when I can. It's not been very often over the past few years but I've been doing a little here and there. I guess that's another reason why I've taken to this blog.
With each little thing that was taken from me by the PsA, Fibro, APS, and other diseases, I feel like maybe I can get something back by reaching out. Whether that's a crazy notion or not remains to be seen. But I'm not giving up. Not yet. As I said before, I'm stubborn.
Until next time,
Kay
As the title states, I'm pretty much locked inside more often than I'd like. Not just because of the PsA. I have a few other diseases as well that limit what I can do and where I can go. Unfortunately, PsA was just the beginning of them. I was a regular teenager doing regular teenager stuff when I first starting feeling the pains and aches. That's when I started to slow down a little bit. Even before I turned 20, I had already stopped being able to just get up and go somewhere at a moment's notice. I began having to plan what I needed to do in order to go somewhere. It didn't seem to stop me from going places. I could get up and go if I pushed myself. However, I paid for it severely afterward with very swollen feet and hands.
Once it became apparent that I wouldn't be able to do as much as I once could, I began to see a rheumatologist. He is very warm and kind which helps when he has to deliver bad news. I'm also glad that he is very honest with me. He told me that there wasn't a cure for the PsA and that we would be able to stave off some of the joint destruction. But - yeah there's always a but - I probably wouldn't be able to stand for long periods of time or do much with my hands all at once anymore. That pretty much became the time when I had to start learning to limit myself as well as asking others for help. Now, anyone who knows me will tell you that I'm stubborn. (Shh! Mom, no comments from the peanut gallery.) It took an awful lot to ask others for help. Especially when you could see in their eyes that they thought you were faking a lot of the time. I'm not saying that I didn't have days where I just didn't want to do things. Most of the time, I really did need the help. It was pretty much the most humbling period of my life. Still is, to be very blunt.
Due to other diseases and medication changes, I have developed a sensitivity to the sun. In fact, I have to put on sunscreen before I can go out for even a few minutes or I get itchy welts and red spots similar to an allergic reaction. I usually have to take Benadryl in order to calm the itch and redness if I forget and go outside without the sunscreen. To go to a doctor's appointment or a simple family cookout takes planning. I have to have the clothes ready for the appointment, have help to get a shower the night before and make sure that I have my portable oxygen tank ready to be used. The day of the doctor's appointment (or get-together with friends, etc), I have to pace myself getting ready. I spend about an hour getting refreshed (teeth brushed, putting on deodorant, fixing my hair, etc) and then have to rest for a while. I haven't worn make-up in years because I usually don't have the strength or the energy to put it on. Then I change my clothes and put on my sunscreen. Slip on shoes have been my saving grace for the past five years. I've honestly worn the same pair of slip-ons for the past five years. I do have a pair of tennis shoes but I haven't worn them in a fairly long time as I can't tie the strings some days. On goes the oxygen tank and away I go!
Deep down, I want to be able to do more things, go out to more places, and just live my life. Right now, I don't think it's possible with everything that I have to deal with on a daily basis. Maybe that's just the walls closing around me a bit. I don't know for certain. It does seem that I live more online nowadays than in the past. Of course, there's Facebook and all its games. I've met some wonderful people on there that share this dreaded disease with me. I'm thankful that I was able to join a Yahoo! group made up of some amazing people who have PsA and Fibro as well. I also visit Pogo on occasion. Besides all that, I do try to keep busy when offline. To be honest, I can't just sit at the computer for hours on end as I was once able to do. Every hour or so, I have to get up and more or else I won't be able to move at all without severe pain. Some days an hour is pushing my limit. I taught myself how to crochet. Thanks to youtube and a wonderful woman named Teresa who makes crochet videos, I've been able to master some stitches that I thought impossible - even without PA. I also try to write when I can. It's not been very often over the past few years but I've been doing a little here and there. I guess that's another reason why I've taken to this blog.
With each little thing that was taken from me by the PsA, Fibro, APS, and other diseases, I feel like maybe I can get something back by reaching out. Whether that's a crazy notion or not remains to be seen. But I'm not giving up. Not yet. As I said before, I'm stubborn.
Until next time,
Kay
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