It's been a while. It's been a LONG while, I know. I think I have had a bad case of writer's block. Ok, maybe it was the fact that my Sunny disposition was NOT so sunny and I had absolutely nothing inspiring to say. The end of the school year for me was one of the hardest times I have had to endure in a long time. It was the most difficult time I have had to endure with my illness to date. I was full of false hope from my doctor telling me that my Humira injections were going to make me feel so much better (not to mention the wonderful commercials I have seen for it). I was exhausted, not tired, a never ending exhausted...a to-the-bone exhausted that stripped me of my ability to think, speak, and even care about what was going on around me. With that, my rheumy told me to just drink more coffee...lol. I was in pain, in constant inflammation, and feeling very certain that I wasn't going to make it to the end of the year. I had to keep telling myself, "just a few more weeks"...then, "just X amount of days"...finally resorting to, I will try to make it through this next hour. I pushed myself and pushed myself, and for what? A paycheck... We are so worried about money, that my mental, physical and emotional health was pushed to the brink.
On top of all of this, had been a progressing stomach issue that continued to get shrugged off. It started around February, and when I first brought it up to my rheumy, she said it was common and to make sure I continued my folic acid. I told her I was taking Pepcid daily and it wasn't helping. By April, my last appointment with her before her maternity leave, I let her know that my stomach was better (neither was my RA for that matter), and that I was having trouble eating. I told her I was chewing Gaviscon throughout the day, which really wasn't helping. And, I told her again about my exhaustion and my inability to mentally function during the day. Drink more coffee!! Oh, ok...Kids, yes you--put down your calculators, we are running to Starbucks. I am sure no one will mind! Oh wait, I can't do that...the coffee is making me sick. Duh! And, I don't think I sneak 30 5th grade students out to Starbucks on a daily basis!
By May, I was happy if I ate the equivalent of 1 meal a day. I was just sick to my stomach, food went right through me, and I gagged and gagged- a lot! With my rheumy on maternity leave, I thought I would hold out until my appointment with the other Rheumy in her practice in June. Oh but wait, he decided to quit before my appointment!
Summer is usually a relaxing, regenerating, and recuperating time for me. However, not this time. I spent most of June and July flaring up and very sick. My voice is strained making it difficult to talk and I have a difficult time swallowing without gagging. So, my husband decided enough was enough and sent me to his PCP...who in turn, sent me straight to a Gastroenterologist, who in turn ordered an Endoscopy to be done. The procedure, along with the biopsy and esophagus dilation, was done this past Friday as I await the results. My theory, and my hope, is that it is the methotrexate and nothing worse.
Summer is pretty much over for me, with having to go back to work tomorrow to start setting up my classroom, and officially reporting for duty next Monday. My RA is not under control, I am still tired (even on summer break), and I am still sick. The sunny side has got to be in there somewhere...right? Oh yeah, at least I am bringing home that paycheck! :) (Insert sinister giggle here)...
The sun IS there, even if you can't see it behind the clouds...
Sunday, August 7, 2011
Sunday, May 15, 2011
The R.A. Roller Coaster
Ah, the roller coaster of life, full of twists and turns, ups and downs...If that is just life, what is life with Rheumatoid Arthritis?
Imagine the biggest most frightening roller coaster you have ever seen, only with the shortest line! Hmmmm, why is that? ;) This roller coaster is not the kind of roller coaster that anyone would volunteer to get on. I didn't choose this coaster, this coaster chose me. The R.A. roller coaster has ups and downs, that's for sure. But, my roller coaster has seen fewer ups that it has downs. Though exhilarating to some, the downs on the R.A. coaster can be steeper and more unexpected than most. Just when things seem to be at an even keel, you can plummet to what appears to be an endless depth.
Like a regular roller coaster, the R.A. monster coaster has its share of twists and turns. What's the difference? Perhaps it's the frequency and severity of those twists and nauseating turns that make life with R.A. difficult to handle at times. The twists and turns of the pain and exhaustion, popping out of nowhere, gripping you at the most inopportune time, make it feel like a never ending battle.
What about the dark tunnels? For a person with R.A., the dark tunnels can be feared the most. I don't know many people with Rheumatoid Arthritis who will deny having bouts of depression to fight through, along with the pain and fatigue. Even when focusing on the "ups", one can find themselves so physically and mentally exhausted, that emotionally it becomes very difficult to cope with. Going through those dark tunnels can seem like the scariest part because this is the moment when my roller coaster appears to go in slow motion. I can look in every direction and all I can do is embrace the darkness and move forward. There is no going back and there is no looking back.
Moving forward-the motion of life, the momentum of a roller coaster. Moving forward-no matter how scary the roller coaster, no matter how terrifying the ups and downs, no matter how dark the tunnels get-is the key to moving through it. It's not the key to getting off the roller coaster! Only the Lord knows when the car of our roller coaster will come to a complete stop! All we can do is go with the flow, enjoy the ride (no matter the ride), and keep moving forward through it! (Oh, and please keep your hands and feet inside the car at all times!)
Whether you are in an Up or a Down, look to SUN! When you enter that dark tunnel, look to the SON!
Many Blessings!
Imagine the biggest most frightening roller coaster you have ever seen, only with the shortest line! Hmmmm, why is that? ;) This roller coaster is not the kind of roller coaster that anyone would volunteer to get on. I didn't choose this coaster, this coaster chose me. The R.A. roller coaster has ups and downs, that's for sure. But, my roller coaster has seen fewer ups that it has downs. Though exhilarating to some, the downs on the R.A. coaster can be steeper and more unexpected than most. Just when things seem to be at an even keel, you can plummet to what appears to be an endless depth.
Like a regular roller coaster, the R.A. monster coaster has its share of twists and turns. What's the difference? Perhaps it's the frequency and severity of those twists and nauseating turns that make life with R.A. difficult to handle at times. The twists and turns of the pain and exhaustion, popping out of nowhere, gripping you at the most inopportune time, make it feel like a never ending battle.
What about the dark tunnels? For a person with R.A., the dark tunnels can be feared the most. I don't know many people with Rheumatoid Arthritis who will deny having bouts of depression to fight through, along with the pain and fatigue. Even when focusing on the "ups", one can find themselves so physically and mentally exhausted, that emotionally it becomes very difficult to cope with. Going through those dark tunnels can seem like the scariest part because this is the moment when my roller coaster appears to go in slow motion. I can look in every direction and all I can do is embrace the darkness and move forward. There is no going back and there is no looking back.
Moving forward-the motion of life, the momentum of a roller coaster. Moving forward-no matter how scary the roller coaster, no matter how terrifying the ups and downs, no matter how dark the tunnels get-is the key to moving through it. It's not the key to getting off the roller coaster! Only the Lord knows when the car of our roller coaster will come to a complete stop! All we can do is go with the flow, enjoy the ride (no matter the ride), and keep moving forward through it! (Oh, and please keep your hands and feet inside the car at all times!)
Whether you are in an Up or a Down, look to SUN! When you enter that dark tunnel, look to the SON!
Many Blessings!
Saturday, May 7, 2011
The Day Rheumatoid Arthritis Went on a Field Trip...
This past Thursday, we took our 105 5th grade students on an outdoor educational field trip. They've been looking forward to this for months, while I have been secretly dreading it for months. The students were split up into 4 groups to rotate through 4 stations: Archery, GPS, Team Challenge Course, and a Giant Swing (which is literally a giant swing for 3 kids and loads of fun). Each station was located at different areas of the beautiful Lake Geneva Youth Camp, which required a lot of walking and standing on my part. The GPS station sent us on a scavenger hunt, which had us hiking all over the the place.
Now, as a precautionary measure, my husband, also a teacher in our school district, took a personal day to chaperone. He came to act as/for me in the event that I wouldn't be able to keep up due to my RA. Let me tell you...I couldn't keep up! By the end of the day, the pain had gone from throbbing to stabbing, and I had gone from tired to physically and mentally exhausted.
Upon arriving home, I couldn't even keep my eyes open during story time with my son and fell into a deep sleep-right through dinner. Almost 2 hours later, the pain in my legs woke me up. My family was about the house getting on with their evening as I limped around heating up dinner and eating alone in tears from the pain I was in. I took a Meloxicam (my prescribed NSAID and second dose for the day, despite the once a day prescription) and Tylenol Arthritis.
Tylenol Arthritis is to my pain what a Band-Aid is to a severed limb...pointless. But, out of desperation, I took it anyway. I stayed up for about 2 more hours with my family and went right back to sleep on the couch once again, until my husband woke me up to send me to bed. This is what quality time with my family has become. Like a stranger watching from the outside looking in, I am watching my family pass me by.
Begrudgingly, I got up for work on Friday, taking another Meloxicam (ignoring any thoughts about my liver), taking more Tylenol Arthritis, and a stimulant to fight off the exhaustion so I can mentally function at work. What some people might not realize, nor appreciate (in particular, my doctor), is that teachers do need to have a high degree of mental alertness when at work, to do the job we do: to teach; to deal with not just one behavior issue, but multiple and sometimes at the same time; to multi-task; to deal with the stress of the job, the paper work, the noise, the interruptions; to be on our feet all day; to deal with 29 different kids at once all day long. There is no room for mental fog. There is no room for exhaustion-not this type of exhaustion, or else chaos can erupt. So, I have started taking a stimulant prescribed by my neurologist, just so I can maintain mental clarity and function at work. Some days it is kind of helpful. On Friday, it was like taking a sugar pill.
By the end of the day, I spent all of the energy I had and completely shut down to the point where I couldn't even talk to my family with more than 1 or two word responses. We drove to our seasonal campground site with mommy silent and eventually fast asleep. Even upon arrival, I pulled together as much energy as I could to put the food in the cabinet and refrigerator, and then I crashed. For the first time, I literally crashed physically, mentally and emotionally as I watched the kids running in and out of the camper, playing and laughing. I watched the dog chasing them all around. I watched my husband being a busy bee, setting things up, getting firewood, raking leaves. And there I sat, spent, silently in pain with nothing left to enjoy, to give them, to participate with.
For the first time, I thought a very depressing thought, "so, this is what life looks like without me in it." I mustered enough energy to drag myself to bed, fully clothed, no bedtime meds, and wondered, how can RA be doing this to me? How am I going to continue doing this-to myself, to my family?
So many questions all of the time, and yet, so many will go unanswered. I did the only thing I knew what to do to cope. I went to bed and prayed that the Lord will help me fall asleep quickly and soundly. 12+ hours later, it's a new day filled with new hope, new uncertainties, and new questions. Thankfully, it's also a day I am NOT working, because having to take my meds I missed last night, has now put me into a medication fog and I would not be functioning well at work today at all. Thankfully, today is Saturday and I can spend more time with MY children and give THEM what energy I have. Thankfully, there are no more field trips this year!! (Oh, but a full day of Field Day is scheduled for the 20th--ugh) Thankfully, summer vacation is coming soon, but not soon enough.
What I wonder is, how can RA and my job work together? How will RA learn to live in harmony with the expectations of my profession, since the expectations of my profession aren't changing, only becoming more challenging? So many questions, that may go unanswered...
May you find all the answers to the questions that RA has brought into your life...Many blessings!
Now, as a precautionary measure, my husband, also a teacher in our school district, took a personal day to chaperone. He came to act as/for me in the event that I wouldn't be able to keep up due to my RA. Let me tell you...I couldn't keep up! By the end of the day, the pain had gone from throbbing to stabbing, and I had gone from tired to physically and mentally exhausted.
Upon arriving home, I couldn't even keep my eyes open during story time with my son and fell into a deep sleep-right through dinner. Almost 2 hours later, the pain in my legs woke me up. My family was about the house getting on with their evening as I limped around heating up dinner and eating alone in tears from the pain I was in. I took a Meloxicam (my prescribed NSAID and second dose for the day, despite the once a day prescription) and Tylenol Arthritis.
Tylenol Arthritis is to my pain what a Band-Aid is to a severed limb...pointless. But, out of desperation, I took it anyway. I stayed up for about 2 more hours with my family and went right back to sleep on the couch once again, until my husband woke me up to send me to bed. This is what quality time with my family has become. Like a stranger watching from the outside looking in, I am watching my family pass me by.
Begrudgingly, I got up for work on Friday, taking another Meloxicam (ignoring any thoughts about my liver), taking more Tylenol Arthritis, and a stimulant to fight off the exhaustion so I can mentally function at work. What some people might not realize, nor appreciate (in particular, my doctor), is that teachers do need to have a high degree of mental alertness when at work, to do the job we do: to teach; to deal with not just one behavior issue, but multiple and sometimes at the same time; to multi-task; to deal with the stress of the job, the paper work, the noise, the interruptions; to be on our feet all day; to deal with 29 different kids at once all day long. There is no room for mental fog. There is no room for exhaustion-not this type of exhaustion, or else chaos can erupt. So, I have started taking a stimulant prescribed by my neurologist, just so I can maintain mental clarity and function at work. Some days it is kind of helpful. On Friday, it was like taking a sugar pill.
By the end of the day, I spent all of the energy I had and completely shut down to the point where I couldn't even talk to my family with more than 1 or two word responses. We drove to our seasonal campground site with mommy silent and eventually fast asleep. Even upon arrival, I pulled together as much energy as I could to put the food in the cabinet and refrigerator, and then I crashed. For the first time, I literally crashed physically, mentally and emotionally as I watched the kids running in and out of the camper, playing and laughing. I watched the dog chasing them all around. I watched my husband being a busy bee, setting things up, getting firewood, raking leaves. And there I sat, spent, silently in pain with nothing left to enjoy, to give them, to participate with.
For the first time, I thought a very depressing thought, "so, this is what life looks like without me in it." I mustered enough energy to drag myself to bed, fully clothed, no bedtime meds, and wondered, how can RA be doing this to me? How am I going to continue doing this-to myself, to my family?
So many questions all of the time, and yet, so many will go unanswered. I did the only thing I knew what to do to cope. I went to bed and prayed that the Lord will help me fall asleep quickly and soundly. 12+ hours later, it's a new day filled with new hope, new uncertainties, and new questions. Thankfully, it's also a day I am NOT working, because having to take my meds I missed last night, has now put me into a medication fog and I would not be functioning well at work today at all. Thankfully, today is Saturday and I can spend more time with MY children and give THEM what energy I have. Thankfully, there are no more field trips this year!! (Oh, but a full day of Field Day is scheduled for the 20th--ugh) Thankfully, summer vacation is coming soon, but not soon enough.
What I wonder is, how can RA and my job work together? How will RA learn to live in harmony with the expectations of my profession, since the expectations of my profession aren't changing, only becoming more challenging? So many questions, that may go unanswered...
May you find all the answers to the questions that RA has brought into your life...Many blessings!
Monday, April 25, 2011
I AM ANGRY! And that's OK! (Rantings of an RA patient)
I AM ANGRY!!!!!! I want to use my loud voice to shout it to the roof tops. I want to scream, I want to yell, I want to kick and break things. I want to throw a tantrum. But then, I look at the innocent eyes of my children and think how I have worked so hard to show by example that when we get angry we talk about it, we communicate, we discuss our feelings-we do NOT throw temper tantrums and fits. And yet, that is exactly how I feel.
I have read somewhere that when you are ill, chronically ill as I have been "labeled," you go through the stages of the grieving process, sometimes multiple times a day: denial/isolation, anger, bargaining, depression, and acceptance. I have learned that they do not have to follow in that order, nor do they all have to happen at all. Well, I am stuck. I am stuck in ANGER and I am uncertain how to get out. Even with my bright side and sunny disposition, I have found that I have a deep rooted anger brewing inside me. I believe this is occurring for many reasons. Reason 1: As I was growing up, I learned to "cope" with my anger issues by utilizing physical outlets other than punching walls and breaking my toys. I started to work out, pump iron, run. What a great stress/anxiety reliever. What a great way to let out that physical build up. My rheumatoid arthritis has put a stop to that. It is a rarity that I am able to use weights and the treadmill, and even when I do, I am not pounding my work outs like I use to-the kind that would beat the anger right out of me! Stressed? HA!! One of my largest resources has been taken from me and I am angry. And that is okay. It's OK to be angry. Sunny Solution: WRITE, WRITE, WRITE! Voice it, talk it out! Take smaller, gentler walks...and maybe a small glass of wine or two! :)
My husband and I discussed that maybe I have not accepted my illness completely. Nah, I have accepted it. How could I not? It stares me in the face daily, with not so gentle reminders! Then he lovingly and gently suggested that I haven't exactly accepted the changes and adaptations that I have to make in my life now...WHAT?!?! Ok, seriously, I wasn't mad. I applaud him for his bravery in telling me the truth (gutsy guy). However truthful that is, I can counter that with this: HOW DOES ONE ACCEPT THEIR LIMITATIONS AND THE CHANGES IN THEIR LIFE THAT THEY HAVE TO MAKE, WHEN THE REST OF THE WORLD IS NOT ACCEPTING THEM OR SEEING THEM AS NECESSARY???? Ok, all caps off...just had to get that angry statement off my chest. I am in constant battle with accepting the reality of my new life, because life has not accepted it yet. Case in point-- my job. How can I accept my limitations, accept the changes and adaptations in my life when my job has the same expectations it has always had of me? I am a teacher. I was always a great teacher, a job I was good at and proud of. As my health has disintegrated, I have watched my career and my ability to barely keep up with my job equally disintegrate. And I am the one not accepting my new life? No one at work is saying, "Sue, you look awful, let me take your 29 5th graders from you for a while so you can take a break" or "You have been painfully limping around all day, let me take your kids back and forth from classes and up and down the stairs" or "Sue, you seem so exhausted and I know the kids are really out of sorts, let me come in and help out". That is not how it is at all. Oh contraire...it's more expectations, more paperwork, more "your kids weren't quiet in the hallway" (really? You should see them in my room when I am too tired to do anything about it)...no one is adapting to ME, so how do I adapt to ME? (Yes, I have been open with my illness and how I feel.) And work isn't the only place I see it--people are constantly "curing" me with their suggestions, playing down the way I feel, making me feel guilty for not being able to do what I am no longer able to do. Reason #2 for my anger: I AM NOT THE ONE IN DENIAL...EVERYONE ELSE SEEMS TO BE! I guess that's ok, too. How could they understand, right? It's not like I am dying. I am not terminal. Sunny Solution: Continue to voice what RA is all about. Dispel the myths about Rheumatoid Arthritis. Be more vocal about an illness that most people don't understand. Also, perhaps it's time we consider the reality that maybe it is time to make the hard decision that we've been avoiding, "to work or not to work, that is the question."
Reason #3 for my anger: not that I would wish this on anyone, but, I am angry that this happened to ME/us. We are not a family that can afford to be on one salary. It's selfish to think like this, but come on. How many of you haven't thought to yourself, why me?? I mean, there are many people in this world, even close to me, that could afford to be on one salary living in luxury, and I am the one putting the financial strain on my family?? Reason #3: Guilt. I have guilt, this immense guilt, that I can not get rid of. I see what this is doing to my family, especially my husband, and I can not help but feel guilty. What unselfish, loving person wouldn't feel guilty. I am angry because I can't get over the guilt. I am constantly faced with guilt: "Mommy isn't feeling up to playing right now" "Mommy can't walk guys, sorry, go without me" "Mommy is too tired" "Mommy is sick" "We had to cancel our trip to Disney, guys, because we didn't think mommy would be able to do it" (that was BEFORE my diagnosis) "Sorry son, we don't have money for college for you, we have a very uncertain future"-ouch! Then, the guilt of watching my poor husband unravel because this is getting so hard for all of us, especially him. Our support system consists of...um, uh, my husband, and therefore, everything is put on his shoulders. Reason #3: I feel guilty. I guess it's OK to feel guilty, too. Sunny Solution: I don't have an answer for this one. My husband and I discussed that perhaps I am asking the Lord the wrong question. Instead of asking Him, "why?" (and getting no response), maybe I should be asking Him, "How? How, Lord?" Another thing I can do, I suppose, is shield myself from other people who make me feel guilty over things that are not within my control.
CONTROL. How can I feel guilty over something in which I have no control? Right? It is not my fault. It is not my body's fault...so why am I blaming myself? Solution: Accept that it is NOT my fault and that there is no one and nothing to blame. It just is...
Reason #4: Lack of compassion from others. Seriously, is it just me or is it TOO painful and TOO much work and effort to pass along well wishes?? To send a "thinking of you" message? To say, "hope you are doing well today"? In this day and age of instant connections through advanced technologies, it requires about a split second to IM someone on facebook and say, "hey, hope you are well!" I have done it. If I know some one's been down and out, sick, having issues, I ACKNOWLEDGE their pain, illness, THEM by dropping them notes telling them I miss them, I am thinking of them, I hope they are well... What has happened to society? Have we been given the opportunity, the advantage if you will, to be so instantly in touch with people, that we have become so out of touch with people?? I can get a text message for the most insignificant reason, but to be invisible to others while I have an invisible illness is almost too much! To be honest, it's not just other people, it's me too! I am finding that I lack compassion for myself. I treat myself in ways that I would NEVER treat someone else. I get angry with myself for not being able to do things that I once was able to do. I have expectations of myself that are way too high. I push myself to limits that knock me back down to the couch for days. If it were someone else, I would dote on them and do things for them to make their life easier. I would be kinder to them, gentler with their condition, but me? No way...I haven't even developed compassion for myself. Sunny Solution: Be kinder to myself. Show myself MORE compassion, as if I were someone else. Change my expectations of others around me, and work harder at building a support system- if not for me, then for my husband and children. Continue to show others the kindness I would enjoy in return.
Now that I have SOME of that off my chest, I am feeling a little better. I can't say my anger is gone, but writing it out, reasoning it out, and coming up with my own solutions helps take the edge off, like a Vicodin for pain (don't get me started on reasons I am angry with doctor! LOL)
Perhaps I will be able to move into the next stage of grief, whichever stage that may be (although, I can't admit that I have ever tried to bargain...) I am hoping to move to acceptance and eventually to peace. Peace is my ultimate goal, peace is the one thing I haven't felt on this roller coaster in almost 3 years. Baby steps. One thing at a time...working through it all...one angry step at a time! :)
Hoping you find your Sunny solutions, too! Many blessings!
I have read somewhere that when you are ill, chronically ill as I have been "labeled," you go through the stages of the grieving process, sometimes multiple times a day: denial/isolation, anger, bargaining, depression, and acceptance. I have learned that they do not have to follow in that order, nor do they all have to happen at all. Well, I am stuck. I am stuck in ANGER and I am uncertain how to get out. Even with my bright side and sunny disposition, I have found that I have a deep rooted anger brewing inside me. I believe this is occurring for many reasons. Reason 1: As I was growing up, I learned to "cope" with my anger issues by utilizing physical outlets other than punching walls and breaking my toys. I started to work out, pump iron, run. What a great stress/anxiety reliever. What a great way to let out that physical build up. My rheumatoid arthritis has put a stop to that. It is a rarity that I am able to use weights and the treadmill, and even when I do, I am not pounding my work outs like I use to-the kind that would beat the anger right out of me! Stressed? HA!! One of my largest resources has been taken from me and I am angry. And that is okay. It's OK to be angry. Sunny Solution: WRITE, WRITE, WRITE! Voice it, talk it out! Take smaller, gentler walks...and maybe a small glass of wine or two! :)
My husband and I discussed that maybe I have not accepted my illness completely. Nah, I have accepted it. How could I not? It stares me in the face daily, with not so gentle reminders! Then he lovingly and gently suggested that I haven't exactly accepted the changes and adaptations that I have to make in my life now...WHAT?!?! Ok, seriously, I wasn't mad. I applaud him for his bravery in telling me the truth (gutsy guy). However truthful that is, I can counter that with this: HOW DOES ONE ACCEPT THEIR LIMITATIONS AND THE CHANGES IN THEIR LIFE THAT THEY HAVE TO MAKE, WHEN THE REST OF THE WORLD IS NOT ACCEPTING THEM OR SEEING THEM AS NECESSARY???? Ok, all caps off...just had to get that angry statement off my chest. I am in constant battle with accepting the reality of my new life, because life has not accepted it yet. Case in point-- my job. How can I accept my limitations, accept the changes and adaptations in my life when my job has the same expectations it has always had of me? I am a teacher. I was always a great teacher, a job I was good at and proud of. As my health has disintegrated, I have watched my career and my ability to barely keep up with my job equally disintegrate. And I am the one not accepting my new life? No one at work is saying, "Sue, you look awful, let me take your 29 5th graders from you for a while so you can take a break" or "You have been painfully limping around all day, let me take your kids back and forth from classes and up and down the stairs" or "Sue, you seem so exhausted and I know the kids are really out of sorts, let me come in and help out". That is not how it is at all. Oh contraire...it's more expectations, more paperwork, more "your kids weren't quiet in the hallway" (really? You should see them in my room when I am too tired to do anything about it)...no one is adapting to ME, so how do I adapt to ME? (Yes, I have been open with my illness and how I feel.) And work isn't the only place I see it--people are constantly "curing" me with their suggestions, playing down the way I feel, making me feel guilty for not being able to do what I am no longer able to do. Reason #2 for my anger: I AM NOT THE ONE IN DENIAL...EVERYONE ELSE SEEMS TO BE! I guess that's ok, too. How could they understand, right? It's not like I am dying. I am not terminal. Sunny Solution: Continue to voice what RA is all about. Dispel the myths about Rheumatoid Arthritis. Be more vocal about an illness that most people don't understand. Also, perhaps it's time we consider the reality that maybe it is time to make the hard decision that we've been avoiding, "to work or not to work, that is the question."
Reason #3 for my anger: not that I would wish this on anyone, but, I am angry that this happened to ME/us. We are not a family that can afford to be on one salary. It's selfish to think like this, but come on. How many of you haven't thought to yourself, why me?? I mean, there are many people in this world, even close to me, that could afford to be on one salary living in luxury, and I am the one putting the financial strain on my family?? Reason #3: Guilt. I have guilt, this immense guilt, that I can not get rid of. I see what this is doing to my family, especially my husband, and I can not help but feel guilty. What unselfish, loving person wouldn't feel guilty. I am angry because I can't get over the guilt. I am constantly faced with guilt: "Mommy isn't feeling up to playing right now" "Mommy can't walk guys, sorry, go without me" "Mommy is too tired" "Mommy is sick" "We had to cancel our trip to Disney, guys, because we didn't think mommy would be able to do it" (that was BEFORE my diagnosis) "Sorry son, we don't have money for college for you, we have a very uncertain future"-ouch! Then, the guilt of watching my poor husband unravel because this is getting so hard for all of us, especially him. Our support system consists of...um, uh, my husband, and therefore, everything is put on his shoulders. Reason #3: I feel guilty. I guess it's OK to feel guilty, too. Sunny Solution: I don't have an answer for this one. My husband and I discussed that perhaps I am asking the Lord the wrong question. Instead of asking Him, "why?" (and getting no response), maybe I should be asking Him, "How? How, Lord?" Another thing I can do, I suppose, is shield myself from other people who make me feel guilty over things that are not within my control.
CONTROL. How can I feel guilty over something in which I have no control? Right? It is not my fault. It is not my body's fault...so why am I blaming myself? Solution: Accept that it is NOT my fault and that there is no one and nothing to blame. It just is...
Reason #4: Lack of compassion from others. Seriously, is it just me or is it TOO painful and TOO much work and effort to pass along well wishes?? To send a "thinking of you" message? To say, "hope you are doing well today"? In this day and age of instant connections through advanced technologies, it requires about a split second to IM someone on facebook and say, "hey, hope you are well!" I have done it. If I know some one's been down and out, sick, having issues, I ACKNOWLEDGE their pain, illness, THEM by dropping them notes telling them I miss them, I am thinking of them, I hope they are well... What has happened to society? Have we been given the opportunity, the advantage if you will, to be so instantly in touch with people, that we have become so out of touch with people?? I can get a text message for the most insignificant reason, but to be invisible to others while I have an invisible illness is almost too much! To be honest, it's not just other people, it's me too! I am finding that I lack compassion for myself. I treat myself in ways that I would NEVER treat someone else. I get angry with myself for not being able to do things that I once was able to do. I have expectations of myself that are way too high. I push myself to limits that knock me back down to the couch for days. If it were someone else, I would dote on them and do things for them to make their life easier. I would be kinder to them, gentler with their condition, but me? No way...I haven't even developed compassion for myself. Sunny Solution: Be kinder to myself. Show myself MORE compassion, as if I were someone else. Change my expectations of others around me, and work harder at building a support system- if not for me, then for my husband and children. Continue to show others the kindness I would enjoy in return.
Now that I have SOME of that off my chest, I am feeling a little better. I can't say my anger is gone, but writing it out, reasoning it out, and coming up with my own solutions helps take the edge off, like a Vicodin for pain (don't get me started on reasons I am angry with doctor! LOL)
Perhaps I will be able to move into the next stage of grief, whichever stage that may be (although, I can't admit that I have ever tried to bargain...) I am hoping to move to acceptance and eventually to peace. Peace is my ultimate goal, peace is the one thing I haven't felt on this roller coaster in almost 3 years. Baby steps. One thing at a time...working through it all...one angry step at a time! :)
Hoping you find your Sunny solutions, too! Many blessings!
Wednesday, April 20, 2011
R.A....More or Less...
This illness, this illness that has become a part of me and my life, gives what it gives when it wants to give it. And you get nothing more and nothing less. Rheumatoid Arthritis is so sporadic, so impulsive, that one can't predict how they will feel one minute to the next, let alone one day to the next. Nothing more and nothing less. This illness is all about more and less.
More doctor visits. More sick days. More stress. More medications to try. More medications to stop. More medications to research and wonder about. More pain. More weight on my body. More weight to lose. More doctor visits. More blood drawn. More decisions to make. More prayer. More people to disappoint. More invitations to turn down. More events to miss. More pain. More advice from others. More fears of the future. More exhaustion. More tears. More uncertainty about our future. More reliance on the Lord. More prayer. More faith. More of a relationship with God!
And the less...
Less independence. Less money. Less reliability. Less patience. Less freedom. Less energy for work, my children and my husband. Less time. Less ability to focus on anything. Less support from others. Less understanding. Less working out. Less smiles. Less cleaning. Less of a friend, a sister, and a teacher. Less pain-free days. Less movement. Less hope for getting better. Less walking. Less of a wife. Less of a mom. Less sweating the small stuff. Less concern over my vanity. Less control. Less predictability. Less of me.
This is my life. This is the new me. This is Rheumatoid Arthritis...more or less!
Many blessings for Sunny days ahead!!
More doctor visits. More sick days. More stress. More medications to try. More medications to stop. More medications to research and wonder about. More pain. More weight on my body. More weight to lose. More doctor visits. More blood drawn. More decisions to make. More prayer. More people to disappoint. More invitations to turn down. More events to miss. More pain. More advice from others. More fears of the future. More exhaustion. More tears. More uncertainty about our future. More reliance on the Lord. More prayer. More faith. More of a relationship with God!
And the less...
Less independence. Less money. Less reliability. Less patience. Less freedom. Less energy for work, my children and my husband. Less time. Less ability to focus on anything. Less support from others. Less understanding. Less working out. Less smiles. Less cleaning. Less of a friend, a sister, and a teacher. Less pain-free days. Less movement. Less hope for getting better. Less walking. Less of a wife. Less of a mom. Less sweating the small stuff. Less concern over my vanity. Less control. Less predictability. Less of me.
This is my life. This is the new me. This is Rheumatoid Arthritis...more or less!
Many blessings for Sunny days ahead!!
Saturday, April 16, 2011
Voice of R.A.
What does Rheumatoid Arthritis look like? If you Google images of it, the pictures are frightening, down right horrifying. However for many of us, R.A. is invisible. The outward signs of R.A. are still in their early stages for me and not so easy for someone to see with their eyes, but the battle is within and the damage is being done. If you took a picture of me, I would not be the best "poster child" for Rheumatoid Arthritis. One would look at me and think there was nothing wrong with me based on my outward appearance. So, what kind of impact can I have for myself and others with Rheumatoid Arthritis, if I "don't look sick?"
I can be the VOICE of R.A.!!! Rheumatoid Arthritis couldn't have picked a better person to attack.
To put it nicely, I have a big mouth. My big mouth has been known to get me in trouble, as a matter of fact. I have been known to have to mumble the prayer about the Lord placing one arm around my shoulder and the other over my mouth one too many times. Though, it is not because I lack social skills or anything like that. What I lack is the inability to sit back and watch an injustice being done. What I lack is the ability to do nothing, when I know I have something very powerful working for me- my voice! When action needs to be taken, I am there to do it, whether people like what I haved to say or not!
Oh, R.A., erode my bones, take my joints...but with my voice, you don't stand a fighting chance. What can I do with my voice? Well, what am I doing right now? I can write about my experience with Rheumatoid Arthritis. I can become more vocal for those who are not so willing to be as vocal about it. I can become an advocate, being vocal with lawmakers about arthritis, cures, medications, and disability. I can help- I can help others just like me. I can help others with a RA, chronic illness, or anyone going through this grieving process like I am.
I can become the VOICE OF R.A.! That is MY R.A. super power!! What are you going to do with your R.A.??
Shouting to the Sunny hilltops!! :)
I can be the VOICE of R.A.!!! Rheumatoid Arthritis couldn't have picked a better person to attack.
To put it nicely, I have a big mouth. My big mouth has been known to get me in trouble, as a matter of fact. I have been known to have to mumble the prayer about the Lord placing one arm around my shoulder and the other over my mouth one too many times. Though, it is not because I lack social skills or anything like that. What I lack is the inability to sit back and watch an injustice being done. What I lack is the ability to do nothing, when I know I have something very powerful working for me- my voice! When action needs to be taken, I am there to do it, whether people like what I haved to say or not!
Oh, R.A., erode my bones, take my joints...but with my voice, you don't stand a fighting chance. What can I do with my voice? Well, what am I doing right now? I can write about my experience with Rheumatoid Arthritis. I can become more vocal for those who are not so willing to be as vocal about it. I can become an advocate, being vocal with lawmakers about arthritis, cures, medications, and disability. I can help- I can help others just like me. I can help others with a RA, chronic illness, or anyone going through this grieving process like I am.
I can become the VOICE OF R.A.! That is MY R.A. super power!! What are you going to do with your R.A.??
Shouting to the Sunny hilltops!! :)
Sunday, April 10, 2011
What is Your R.A. Super Power?
This week at school, we had an assembly for the students. Corbin's Exotic Pets came and showed us some incredibly beautiful creatures, some of which I have never heard of. As an extension to this, I found a great National Geographic Explorers (for kids) magazine article about "weird and wonderful" animals. It talked all about these "strange" creatures and their incredible adaptations they had, as well as what the adaptation was used for. For example, we learned about the Waxy Monkey Tree Frog. The Waxy Monkey Tree Frog has actual wax glands, to secrete wax. This allows it to be out in the hot sunlight all day and not "croak!" (I had to do that) Anyway, when introducing adaptations, I made the analogy that they were like the animal's "super power." The wax monkey tree frog's super power? Wax Glands-oh yeah! What does the super power do for it? Protects them from the environment (the sun).
If you think about it, Rheumatoid Arthritis has super powers, too. The amazing thing is, the super powers are different for everyone. Take this weekend for example. Saturday was hot and sunny, and I had to endure sitting for almost 4 hours one-way to drive my son to his college visit. Then, I sat for another hour listening to a general overview/introduction about the college. Afterwards, my body was needed to walk all around campus for almost 2 hours. Flat walking? No! We walked up and down stairs, ramps, and hills, of course! My RA super power of the day? It LET me. For some reason it allowed me to do it. I had some swelling in my ankles and feet, and my knees ached, but I was ok. What a wonderful day!!
Today, was hot and sunny, with a slight wind. We decided it was a lovely to day to go up to our seasonal campsite and uncover the camper and open it up. Camping season is just 2 weeks away!! I did some light lifting and light cleaning of the camper, to put things back in cabinets and drawers. However, today's RA super powers were very different. My RA's super powers? Inflammation and pain!
How is that a super power? I take it as a warning sign. I take it as RA's way of saying, "Sue, I let yesterday go. You overdid it, but with some rest, I figured you would recover and not do it again. But, today showed me you were pushing me a little too far!" (Do YOU ever imagine your RA talking to you, like I do? I hope so!! Or else, I am losing it!!) Shortly after doing some light lifting in the garden at the campground, ok, heavy lifting-who am I kidding- my fingers got very inflammed and stiff and it forced me to stop. It was my body's way of telling me I did too much. I switched activities and emptied plastic tubs of dishes and silverware, etc. into the cabinets, and all of the bending at the knees (PROPER LIFTING FORM) caused my knees to swell and stiffen.
Ok, RA, I hear ya, I hear ya. Hit me with a frying pan already, would ya? My husband decided it would be best to send me out for lunch. Feeling quite useless and shot down, I sulked and headed out. See, I LOVED working in the garden at our site. I love cleaning, believe it or not. I especially like making sure my kitchen is nice and organized. I had so much on my To-Do List today, but RA had other plans for me. Alas, I set out for lunch and a quick trip to the grocery store, and came back with swollen ankles, feet and sausage toes. RA's super power this time? A very big warning that I should have taken seriously all day. All day, my rheumatoid arthritis was telling me that I had already gone too far. All day, I ignored it and kept on doing what I wanted to do.
Pride goeth before the fall.
During the one hour drive home, I slept. For the next three hours, I slept on the couch, unable to budge. Do I recall a Mac Truck and I having a collision? Oh yeah...pride. I was unable to take it easy, watching my husband work so hard, and my children run around playing. Pride-and a lot of restlessness. This illness has not harnessed my restlessness, which seems to be a downfall of mine. Therefore, I lose my balance; the balance between what I am capable of doing at any given moment ('cause that is how RA rolls), what my body is willing to let me do and what I WANT and NEED to do!! Anyone else have a hard time with this balance?
I was cursing RA at the campground, feeling sorry for myself. And after I woke up from my nap, it occurred to me, that I was the one being difficult, not my RA. I was the one living OUT OF HARMONY with my illness and pushed myself to where I am this moment after a day like today. And then I thought of the weird and wonderful creatures I introduced to the students and their adaptations/super powers. What is the purpose of my RA super powers? What does my RA protect me from? MYSELF!
What's your RA Super Power?
Keeping it real...Keeping it SUNNY! Many blessings!
If you think about it, Rheumatoid Arthritis has super powers, too. The amazing thing is, the super powers are different for everyone. Take this weekend for example. Saturday was hot and sunny, and I had to endure sitting for almost 4 hours one-way to drive my son to his college visit. Then, I sat for another hour listening to a general overview/introduction about the college. Afterwards, my body was needed to walk all around campus for almost 2 hours. Flat walking? No! We walked up and down stairs, ramps, and hills, of course! My RA super power of the day? It LET me. For some reason it allowed me to do it. I had some swelling in my ankles and feet, and my knees ached, but I was ok. What a wonderful day!!
Today, was hot and sunny, with a slight wind. We decided it was a lovely to day to go up to our seasonal campsite and uncover the camper and open it up. Camping season is just 2 weeks away!! I did some light lifting and light cleaning of the camper, to put things back in cabinets and drawers. However, today's RA super powers were very different. My RA's super powers? Inflammation and pain!
How is that a super power? I take it as a warning sign. I take it as RA's way of saying, "Sue, I let yesterday go. You overdid it, but with some rest, I figured you would recover and not do it again. But, today showed me you were pushing me a little too far!" (Do YOU ever imagine your RA talking to you, like I do? I hope so!! Or else, I am losing it!!) Shortly after doing some light lifting in the garden at the campground, ok, heavy lifting-who am I kidding- my fingers got very inflammed and stiff and it forced me to stop. It was my body's way of telling me I did too much. I switched activities and emptied plastic tubs of dishes and silverware, etc. into the cabinets, and all of the bending at the knees (PROPER LIFTING FORM) caused my knees to swell and stiffen.
Ok, RA, I hear ya, I hear ya. Hit me with a frying pan already, would ya? My husband decided it would be best to send me out for lunch. Feeling quite useless and shot down, I sulked and headed out. See, I LOVED working in the garden at our site. I love cleaning, believe it or not. I especially like making sure my kitchen is nice and organized. I had so much on my To-Do List today, but RA had other plans for me. Alas, I set out for lunch and a quick trip to the grocery store, and came back with swollen ankles, feet and sausage toes. RA's super power this time? A very big warning that I should have taken seriously all day. All day, my rheumatoid arthritis was telling me that I had already gone too far. All day, I ignored it and kept on doing what I wanted to do.
Pride goeth before the fall.
During the one hour drive home, I slept. For the next three hours, I slept on the couch, unable to budge. Do I recall a Mac Truck and I having a collision? Oh yeah...pride. I was unable to take it easy, watching my husband work so hard, and my children run around playing. Pride-and a lot of restlessness. This illness has not harnessed my restlessness, which seems to be a downfall of mine. Therefore, I lose my balance; the balance between what I am capable of doing at any given moment ('cause that is how RA rolls), what my body is willing to let me do and what I WANT and NEED to do!! Anyone else have a hard time with this balance?
I was cursing RA at the campground, feeling sorry for myself. And after I woke up from my nap, it occurred to me, that I was the one being difficult, not my RA. I was the one living OUT OF HARMONY with my illness and pushed myself to where I am this moment after a day like today. And then I thought of the weird and wonderful creatures I introduced to the students and their adaptations/super powers. What is the purpose of my RA super powers? What does my RA protect me from? MYSELF!
What's your RA Super Power?
Keeping it real...Keeping it SUNNY! Many blessings!
Tuesday, April 5, 2011
Support Systems-or- on the Shoulders of My Husband
I was always an independent person my whole life. I valued depending on no one, being strong enough for myself, not relying on others. I always danced to the beat of a different drum! This independence meant keeping people, especially friends, at arms length. Don't get me wrong. I wasn't anti-social or anything. On the contrary, I was very social, hanging out with many people. But, I am not sure if I did it long enough or with enough depth to let anyone "in" to see and know the real me. What was I protecting myself from? No matter, I was strong and independent and didn't need anyone anyway, right?
Many years later, with an added Autoimmune disease, not much has changed. I am approaching 40, and finding myself without my group of "girlfriends." Today I find I might be even worse-the way I keep people at arms length. Being chronically ill is hard, but being misunderstood, judged, and criticized can be even harder, right? Good thing I am independent, strong and in need of NO ONE!! ...
"Honey, can you cut my meat please after you cut the kids' meat? Oh, kids can you go up and get my ______, mommy can't walk today?! I'm sorry baby, you have to button your own shirt, mommy's fingers are very swollen, stiff, and painful, or go ask daddy. Hon, can I have a chair to sit in while I dry my hair? I can't stand anymore."
uh-hem...as I was saying...
My "friends" from my past have all but faded, and here I am with RA, looking for someone to turn to-looking for a strong support system. My husband, thankfully, has been there 100%. He is my best friend. My small children are becoming increasingly supportive, to the best at which they can understand my illness. For them, I am eternally grateful. But, my lifetime of arms length and independence has come back to my having only my husband's shoulders to lean on. Don't get me wrong, my husband has proven to have shoulders of incredible size and strength. Apparently it can carry a burden beyond belief. But what about him, who's shoulder does he have to lean on? How much longer can he hold on? Who is holding him up? I am so thankful that he is strong in his FAITH, because I believe there are days when God is carrying us BOTH on His shoulders!
RA has opened my eyes to how much people do rely on one another, how important friendships are, and how having a support system is so important to getting through a chronic illness. There are a million things in this world I can look upon in a positive manner and say, "for that, I do not regret." I believe that things happen for a reason, and no matter what mistakes you have made in life, you can pick yourself back up, learn from them, and move on. However, this is something in my life that I am starting to regret, and not just for me, but for the support of my family. I am so thankful we have each other, our love and never ending, common Faith!
Maybe when the Lord believes we are ready for a deeper, more supportive group of people in our lives to help us through, He will provide them to us!! Until then, I lean on the love of my husband and comfort of the Lord!
Do you know of anyone in need? Anyone who might be in need of support?
Support one another--Reach out to one another--and keep the Sunny Side Up!! Many Blessings!! :)
Many years later, with an added Autoimmune disease, not much has changed. I am approaching 40, and finding myself without my group of "girlfriends." Today I find I might be even worse-the way I keep people at arms length. Being chronically ill is hard, but being misunderstood, judged, and criticized can be even harder, right? Good thing I am independent, strong and in need of NO ONE!! ...
"Honey, can you cut my meat please after you cut the kids' meat? Oh, kids can you go up and get my ______, mommy can't walk today?! I'm sorry baby, you have to button your own shirt, mommy's fingers are very swollen, stiff, and painful, or go ask daddy. Hon, can I have a chair to sit in while I dry my hair? I can't stand anymore."
uh-hem...as I was saying...
My "friends" from my past have all but faded, and here I am with RA, looking for someone to turn to-looking for a strong support system. My husband, thankfully, has been there 100%. He is my best friend. My small children are becoming increasingly supportive, to the best at which they can understand my illness. For them, I am eternally grateful. But, my lifetime of arms length and independence has come back to my having only my husband's shoulders to lean on. Don't get me wrong, my husband has proven to have shoulders of incredible size and strength. Apparently it can carry a burden beyond belief. But what about him, who's shoulder does he have to lean on? How much longer can he hold on? Who is holding him up? I am so thankful that he is strong in his FAITH, because I believe there are days when God is carrying us BOTH on His shoulders!
RA has opened my eyes to how much people do rely on one another, how important friendships are, and how having a support system is so important to getting through a chronic illness. There are a million things in this world I can look upon in a positive manner and say, "for that, I do not regret." I believe that things happen for a reason, and no matter what mistakes you have made in life, you can pick yourself back up, learn from them, and move on. However, this is something in my life that I am starting to regret, and not just for me, but for the support of my family. I am so thankful we have each other, our love and never ending, common Faith!
Maybe when the Lord believes we are ready for a deeper, more supportive group of people in our lives to help us through, He will provide them to us!! Until then, I lean on the love of my husband and comfort of the Lord!
Do you know of anyone in need? Anyone who might be in need of support?
Support one another--Reach out to one another--and keep the Sunny Side Up!! Many Blessings!! :)
Friday, April 1, 2011
My deep Dark Side...yeah, I do have one...
I know that I have been preaching about looking on the bright side and keeping the sunny side up. But, there is a dark side to me that I feel the need to reveal- a dark side I struggle with now more then ever. Maybe you can relate to this, maybe not, but my dark side is my insecurity with the way that I look. There, I said it!
On one hand, I can rationalize that I've been much less active, I have had my RA symptoms for almost 3 years now-and not under control yet, might I add. I can also tell you that the medications I am taking are not helping with my weight, especially the prednisone. I can say, "hey, it's ok, you've been through a lot. You are a still beautiful. Your husband loves you and desires you. It's ok." I can rationalize it until I am blue in the face, and after all the rationalizing, pep talking and reassurances, I still catch glimpses of myself in the mirror or in a picture and think, "who is that person staring back at me?" Have you had those moments?
Sometimes I wish we lived in a world in which we all wore blinders. I often wonder what would happen if I could no longer see, God forbid. I certainly wouldn't be able to compare myself to anyone else, now would I? Would it even matter? Oh yes, I would still be able to hear what people say...darn. Do we live in a society that is so shallow that the stress of my illness is compounded by the anxiety of my vanity?
Vanity: noun
1. excessive pride in one's appearance, qualities, abilities, achievements, etc.; character or quality of being vain; conceit
2. lack of real value; hollowness; worthlessness:
3. something worthless, trivial, or pointless
Pride: noun
There is a fine between vanity and pride, and apparently I skate it. See, I've been on both sides of the fence. I have been the overweight person. The person who put on a few extra pounds in college and had to burn them off. Or the person who gained a little too much weight with her pregnancy, and had to start working out a little harder to get rid of it. I have had people make comments about my weight (ie: you have such a pretty face- fatso- why can't you be like my friend's girlfriends?). I have been made to feel like less of a person as a result of it.
On one hand, I can rationalize that I've been much less active, I have had my RA symptoms for almost 3 years now-and not under control yet, might I add. I can also tell you that the medications I am taking are not helping with my weight, especially the prednisone. I can say, "hey, it's ok, you've been through a lot. You are a still beautiful. Your husband loves you and desires you. It's ok." I can rationalize it until I am blue in the face, and after all the rationalizing, pep talking and reassurances, I still catch glimpses of myself in the mirror or in a picture and think, "who is that person staring back at me?" Have you had those moments?
Sometimes I wish we lived in a world in which we all wore blinders. I often wonder what would happen if I could no longer see, God forbid. I certainly wouldn't be able to compare myself to anyone else, now would I? Would it even matter? Oh yes, I would still be able to hear what people say...darn. Do we live in a society that is so shallow that the stress of my illness is compounded by the anxiety of my vanity?
Vanity: noun
1. excessive pride in one's appearance, qualities, abilities, achievements, etc.; character or quality of being vain; conceit
2. lack of real value; hollowness; worthlessness:
3. something worthless, trivial, or pointless
Pride: noun
1. a high or inordinate opinion of one's own dignity, importance, merit, or superiority, whether as cherished in the mind or as displayed in bearing, conduct, etc.
2. a becoming or dignified sense of what is due to oneself or one's position or character; self-respect; self-esteem
There is a fine between vanity and pride, and apparently I skate it. See, I've been on both sides of the fence. I have been the overweight person. The person who put on a few extra pounds in college and had to burn them off. Or the person who gained a little too much weight with her pregnancy, and had to start working out a little harder to get rid of it. I have had people make comments about my weight (ie: you have such a pretty face- fatso- why can't you be like my friend's girlfriends?). I have been made to feel like less of a person as a result of it.
I have also been the the fit person, in the best shape of my life (until my illness of course). I still have had people make comments about my weight (ie: wow, you look so much better- I can't believe how much weight you've lost- what have you been doing to yourself- if you lose anymore weight you will disappear). I can tell you that I still felt like less of a person as a result of it. Some of you might be thinking-oh yeah, come on...really? Yes, really! I resented the comments. I resented the focus on my body and outer looks. I resented the feeling that that is all there was to me.
I will openly reveal in my blog that I have put on weight since this journey began 3 years ago. The "bulk" of it (no pun intended) seemed to have occurred after my Prednisone, Methotrexate, Humira mixture, which has been rather recent. Imagine how I must be feeling now, after people made such an emphasis on how "great" I looked, how much better I was looking, the "wows" I got. I don't get "wows" now, unless it's behind my back, I am sure!! :) Point is, why does someone's physical features have to the thing people talk about and focus on? Whether I am 30 lbs. lighter or heavier, doesn't change the fact that I have a phenomenal mind, the largest humanitarian heart, and a kind and loving spirit. So why, as a whole, do must people struggle to see beyond the shell? If my RA progresses and my body becomes deformed, will these same people no longer find even an ounce of beauty left in me?
This is my dark side, my struggle, my fear. This is my weakness that I so desperately try to hide from my fragile 10 year old daughter. This dark side of me has moved me to seek the only Truth and Light that will set me free from the bondage of this LIE.
Heavenly Father, I come to you broken, vulnerable, imperfect, yet perfectly made by you. I give up to you my dark side, this weakness that I, and I am sure many of my fellow brothers and sisters, struggle with everyday. Help us to find the Truth and Light through you. You are the Way, the Truth and the Light!! Amen!
Praying for MORE Sunny Side Ups!!
Monday, March 28, 2011
Look at the Possibilities
Please watch this video. It's so very inspirational.
When I first started with my RA symptoms, I focused on the negative a lot of the time. I couldn't believe what was happening to me, I couldn't understand what was happening to me (that part hasn't changed much), and I had a very difficult time accepting what was happening to me. This is totally normal, this is okay for us all. We all go through the grieving process, grieving over what use to be. Then I thought about perspective. If I remain in "fall down" mode, what kind of perspective will I have? Try a little experiment. Literally get down on the ground and stay there a while. Try to look around the room or look around the house. How's the view? How well are you able to see? Try to enjoy a conversation with your family, children, and friends. From the ground, try to accomplish even the small things we take for granted. Not the best perspective to have, is it? Very limited, and very limiting. So, it occurred to me that bouncing back isn't just about pulling myself out of a rut, a depression, or a low point in my life. Bouncing back is about having the courage to pick myself up off the floor so that I can have my perspective back. Sometimes when we are down, you get trapped in a pattern of thinking that is difficult to get out of. On the ground looking up, things can seem so large, and looming. Picking myself up has helped gain a whole different perspective.
If you conducted the floor experiment, and then stood up, what are the things you missed while you were down on the ground? Are there now windows you can look out of with birds chirping by? The large and looming objects don't seem so scary to me after all. I've noticed that it helps to focus on what I still have that is good. My husband will joke with me when I am feeling low during a flare and ask, "Ok hon, but how's your pinky toe?" I will usually tell him, "Yes, the pinky toe is feeling great!" He'll say, "Well, there you go!" Seems silly, but it's so true. When I am feeling low, sometimes I have to say, "Ok, so my hands and wrists are stiff, swollen, and painful-as are my ankles, feet, and elbows-but I don't have a headache today!!" It's the little things that seem to help me take my steps forward toward "CAN!"
Quick tips to pick you up:
1. CAN...try to think of all you still CAN do, rather than focusing on all that you can't do, or have a harder time doing. I can still sing. Sometimes I CAN get on a treadmill and walk a slow pace, or enjoy a walk outside. I CAN read stories to my children using the cookiest voices that they love! I CAN tell funny jokes and act like a goofball in front of my 5th graders. CAN! I CAN put on a smile and control my attitude!
2. Count your blessings. What do you have in your life that is good? I have a wonderful family. My husband is my lifeline, and my children are extensions of that! The are the joy that warms my heart everyday, and what pushes me to get up off that floor!! I thank the Lord for them multiple times a day!
3. Make small changes. I decided to stop fighting the RA and make small changes to adapt to my RA, so that RA and I will live together more comfortably, in more harmony, if you will. I am over the fact that I can't wear flat shoes or shoes with very high heels. We've changed some faucets in the house that are easier to maneuver.
4. Put on some upbeat music and sing, sing, sing!! I often find this really helps me a lot!!
5. Develop a closer and more personal relationship with Christ. I don't know where I would be without the peace the Lord brings me everyday! My fears, my worries, I give up to Him. He reminds me that I am not alone.
I would love to hear any other "pick me up" ideas! Post some!!
"I can do all things through Christ who strengthens me" Philippians 4:13
Thursday, March 24, 2011
Bouncing Back
I have a student in my class who has had a hard life. A very sad life. Today, he got in trouble with the Principal. After being released from the "warden", he came in to my classroom, tears rolling down his red cheeks. He walked right over to me, arms outstretched and hugged me.
Hugged me! This might not sound so odd, except that this is a young boy who has built a hard shell around himself. So, I hugged him and gave him the best pep talk that I could muster. It's a blur all that I said (rheumatoid fog), but I ended with this: People will disappoint us, things in life will not happen as we hoped and planned. Sometimes we will fall down. There will be times when it seems like we are always falling down, and that's okay. What builds character, is how many times we get back up after each fall. Every time we bounce back, we get stronger and grow more.
I thought about my student today, about the hard shell he built around himself. It reminded me of myself, and many people I know who have Rheumatoid Arthritis, who are chronically ill, and/or who have been through a lot. When I first discovered I had RA, it was a "fall down" moment, indeed. But what got me back up, was the fact that after 3 years of not knowing what was wrong with me, I now had a diagnosis and a medical plan that would help me get better. Bounce back. Then the questions started. Fall down. I answered as best I could. Bounce back. The silly comments and suggestions come. Fall down. I have learned to forgive and laugh it off because I know they are uninformed. Bounce back. It's a cycle. Our illness is nothing but a cycle-a roller coaster if you will, isn't it? Having a good day (or dare I say two). Feeling pretty good, when out of know where, BAM! FLARE! The flare generally happens at the most inopportune times, of course! Fall down!
Here, at this very moment, I have discovered that I have a choice. Do I remain down, or do I bounce back? RA changed me, caused me to build a shell around me-just like my student. Today made me realize how similar we really are-how there are times I have outstretched arms looking for that hug from anyone willing to support me. Today, more than ever, made me see the importance of bouncing back. RA has affected my body, but it does NOT have to affect my mindset and attitude! At least THAT, I have control over! What will you choose? Will you choose to bounce back? :)
Hugs! Keep bouncing...and keep the Sunny Side Up!!
Hugged me! This might not sound so odd, except that this is a young boy who has built a hard shell around himself. So, I hugged him and gave him the best pep talk that I could muster. It's a blur all that I said (rheumatoid fog), but I ended with this: People will disappoint us, things in life will not happen as we hoped and planned. Sometimes we will fall down. There will be times when it seems like we are always falling down, and that's okay. What builds character, is how many times we get back up after each fall. Every time we bounce back, we get stronger and grow more.
I thought about my student today, about the hard shell he built around himself. It reminded me of myself, and many people I know who have Rheumatoid Arthritis, who are chronically ill, and/or who have been through a lot. When I first discovered I had RA, it was a "fall down" moment, indeed. But what got me back up, was the fact that after 3 years of not knowing what was wrong with me, I now had a diagnosis and a medical plan that would help me get better. Bounce back. Then the questions started. Fall down. I answered as best I could. Bounce back. The silly comments and suggestions come. Fall down. I have learned to forgive and laugh it off because I know they are uninformed. Bounce back. It's a cycle. Our illness is nothing but a cycle-a roller coaster if you will, isn't it? Having a good day (or dare I say two). Feeling pretty good, when out of know where, BAM! FLARE! The flare generally happens at the most inopportune times, of course! Fall down!
Here, at this very moment, I have discovered that I have a choice. Do I remain down, or do I bounce back? RA changed me, caused me to build a shell around me-just like my student. Today made me realize how similar we really are-how there are times I have outstretched arms looking for that hug from anyone willing to support me. Today, more than ever, made me see the importance of bouncing back. RA has affected my body, but it does NOT have to affect my mindset and attitude! At least THAT, I have control over! What will you choose? Will you choose to bounce back? :)
Hugs! Keep bouncing...and keep the Sunny Side Up!!
Wednesday, March 23, 2011
Welcome to the Sunny Side Up!
It's only been 4 months since my official diagnosis. I remember it as clear as day, going back to my rheumatologist to let her know that I tapered off of my Fibromyalgia medications because they just weren't doing anything for me. She finally seemed to listen when I said, "the pain seems to be just in my joints." My wrists were hurting, the small joints in my hands and fingers were throbbing-and let's not forget the swelling-yikes! There were times, as well, that I would have used a little walker, if I had one and didn't think it would freak out my 29 5th grade students. My ankles and feet were getting bad enough that I limped around most of the day.
But, on this appointment day, there must have been something different in my voice, or maybe I was able to articulate precisely where the pain was better then ever before. On this day, my rheumatologist decided to do all sorts of bloodwork and X-Rays of my joints. I dreaded returning for the follow up results visit. I mean, come on, it's not like it was the Idol results show or anything which comes with live entertainment. :) Nope, I was prepared to hear the words I had heard for about 3 years: "well, we didn't find anything." Instead, she went through my bloodwork, said it all looked ok, and said she wanted to pull up my X-Rays. Several minutes later, she asked me into another room, where my X-Rays were up for viewing. I assumed this was a formality, so my husband and I went in, listened to her talk show the different images, and she stopped at my hands. I remember hearing the word "lesions" and "erosion" and the whole thing became surreal. We went back into our exam room, she said she conferred with the other Rheumatologist and they believe it is Rheumatoid Arthritis. I think she asked if I had any questions....questions?? I don't even remember hearing anything she said, and she wanted to know if I had questions...so I nodded a "no" and let her keep talking. She mentioned something about trying me out on Prednisone to see how I feel, and to come back.
Prednisone. My friend, my foe. Prednisone and I have a love/hate relationship. I love to take it because of how differently I feel on it, but I HATE how I have changed as a result of it. Alas, at my follow up appointment, it was all still a blur because she was still talking about this RA thing, and now some Methotrexate, a chemotherapy, and at this point my head is spinning. So, I stopped her and asked her, "are you sure, this is what you think it is? I do not want to be taking these medications if you aren't absolutely positive." She assured me (or at least convinced me) that she was sure I had RA, and we were going to take an aggressive approach to stop the progression.
4 months. That was 4 months ago. I have since then started Humira injections, well, I have taken 1 injection to date. I will be decreasing my Methotrexate because she believes it is attributing to my exhaustion, and she wrote me a prescription for Prednisone again. I will have to deliberate with my vanity and pride about whether or not I will actually be taking this!
Why the "Sunny Side Up"? For 4 months, (well, for 3 years and 4 months), I have been having a very difficult time dealing with and accepting my diagnosis. Well, I've made it. I am accepting it-not 100%, but I am on my way. I am not angry, though I have angry moments. I am not depressed, though sad moments can creep in. I have an illness that MANY people, including myself, do not understand. I feel like I am being pulled to help others through their journey as well. I would like to use this blog to focus, not only on the pain, frustration, and exhaustion of RA, but the positive things in life that are there if we just look past the harder things. My goal is two-fold: to educate and inform the public about what this illness is all about and help others see the brighter side. Cause really, if you don't look at the bright side, what else do you have to look forward to?
I enjoy mine, Sunny Side Up...how about you?
But, on this appointment day, there must have been something different in my voice, or maybe I was able to articulate precisely where the pain was better then ever before. On this day, my rheumatologist decided to do all sorts of bloodwork and X-Rays of my joints. I dreaded returning for the follow up results visit. I mean, come on, it's not like it was the Idol results show or anything which comes with live entertainment. :) Nope, I was prepared to hear the words I had heard for about 3 years: "well, we didn't find anything." Instead, she went through my bloodwork, said it all looked ok, and said she wanted to pull up my X-Rays. Several minutes later, she asked me into another room, where my X-Rays were up for viewing. I assumed this was a formality, so my husband and I went in, listened to her talk show the different images, and she stopped at my hands. I remember hearing the word "lesions" and "erosion" and the whole thing became surreal. We went back into our exam room, she said she conferred with the other Rheumatologist and they believe it is Rheumatoid Arthritis. I think she asked if I had any questions....questions?? I don't even remember hearing anything she said, and she wanted to know if I had questions...so I nodded a "no" and let her keep talking. She mentioned something about trying me out on Prednisone to see how I feel, and to come back.
Prednisone. My friend, my foe. Prednisone and I have a love/hate relationship. I love to take it because of how differently I feel on it, but I HATE how I have changed as a result of it. Alas, at my follow up appointment, it was all still a blur because she was still talking about this RA thing, and now some Methotrexate, a chemotherapy, and at this point my head is spinning. So, I stopped her and asked her, "are you sure, this is what you think it is? I do not want to be taking these medications if you aren't absolutely positive." She assured me (or at least convinced me) that she was sure I had RA, and we were going to take an aggressive approach to stop the progression.
4 months. That was 4 months ago. I have since then started Humira injections, well, I have taken 1 injection to date. I will be decreasing my Methotrexate because she believes it is attributing to my exhaustion, and she wrote me a prescription for Prednisone again. I will have to deliberate with my vanity and pride about whether or not I will actually be taking this!
Why the "Sunny Side Up"? For 4 months, (well, for 3 years and 4 months), I have been having a very difficult time dealing with and accepting my diagnosis. Well, I've made it. I am accepting it-not 100%, but I am on my way. I am not angry, though I have angry moments. I am not depressed, though sad moments can creep in. I have an illness that MANY people, including myself, do not understand. I feel like I am being pulled to help others through their journey as well. I would like to use this blog to focus, not only on the pain, frustration, and exhaustion of RA, but the positive things in life that are there if we just look past the harder things. My goal is two-fold: to educate and inform the public about what this illness is all about and help others see the brighter side. Cause really, if you don't look at the bright side, what else do you have to look forward to?
I enjoy mine, Sunny Side Up...how about you?
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