Tuesday November 1, 2011 is the day that I take the first steps towards making a dream come true. A dream I have had since I was a child was writing a book. It was also a dream that I gave up over the past year of illness. My illnesses became a thief and stole my dreams.
Fellow blogger and friend Deb of The ABC's of RA reminded me of the importance of having dreams. Two dreams that I have had since I was a child are 1) To write a book and 2) Travel - Hawaii and the most recent is to get my kids to Disney while they are young enough to be in awe of all it has to offer.
When I first rediscovered my dreams it was with pain. I realized that with my current limitations they were going to be next to impossible. Or were they? Where there is a will there is a way. It required some creative thinking. So I got creative and here is what I learned.
I have looked into the travel and we can do a two week Disney Cruise to Hawaii...pretty cool way to experience both at the same time. The magic of Disney in a way that I will better be able to manage with my limitations. There are activities for the kids that are run by the Disney staff. They will have an amazing time that is not dependent on what I am able to do each day. It will not involve walking, walking and more walking as it would if we went to the parks. I can also use a wheelchair or scooter on the cruise if it is needed. I am so excited by this new information. We are saving up for the cruise and I have to tell you it is very cool to have something to work towards making it a reality rather than that wistful longing and not doing anything to get us there. My dreams are only dead if I allow it and I refuse to give up my dreams!!
Writing a book is more of a challenge. My hand deformities and pain limit the amount of typing that I can do. A quick e-mail to my brother the tech wizard and I was advised of the speech recognition software by Nuance - Dragon Naturally Speaking. I will be able to speak and have the computer do the typing for me. This is supposed to be the best on the market so I have ordered and now wait on delivery. Not only will this allow me to achieve my goal of writing a book but it will also make my job much easier. No more typing long e-mails that bring tears to my eyes and take 5x longer than they used to.
I went back through previous blogs and found a contest that I had been interested in but put aside due to the problems with my hands. November 1 - 30th, 2011 is National Novel Writing Month. The challenge is to complete a 50,000 word novel within this time frame. You update your word count through out the month (scrambled so that you don't have to worry about plagiarism) and are considered a winner if you meet the 50,000 words. I have signed up for this contest :) Half the battle is proving to myself that I can indeed write a novel. My problem of course is I have no idea what to write about. I had a few ideas that I was working on months ago but I am in such a different place I feel the need to go a different direction. Essentially I have until Monday night to come up with the topic for my book if nothing else. It would be nice to have an outline going in to the contest but I have read enough about these contests to know that most people toss out their outlines fairly early in the process.
For the first time in a year I have a feeling of being alive. I could get used to this feeling!
What are your dreams? What are you doing to make them a reality?
Wishing everyone a Happy Halloween Weekend!
© 2011 Rhonda
Friday, October 28, 2011
Wednesday, October 26, 2011
Dreams
On Wednesday October 5th one of my favourite blog authors Deb from the ABC's of RA wrote a blog called Hocus, Pocus, Refocus! I'll wait right here while you read this brilliant blog and then we can continue!
Welcome back...told you it was a very worthwhile read :-)
Deb really hit the nail on the head. October 2010 is when my health started to fall apart. Then I had the first two weeks of January where I thought finally things were turning around. Little did I know that I had two weeks to enjoy the last bit of "health" I will have for a long time. Since mid January I have been ill. Desperately looking for what was wrong. Reminding myself daily that the chronic pain, fatigue and a myriad of other strange occurrences were untreated. If I could just get a diagnosis things would go back to normal. I WOULD get my life back. It took 10 months and I had all three diagnosis. For those of you who are new to my blog they are: Hashimotos Thyroiditis, Fibromyalgia and Rheumatoid Arthritis. The hashimotos was promising a single pill a day and my thyroid would function normally...awesome...but I was wrong. My Dr. knew what I refused to believe that there was much more to this. 2 months later the Fibromyalgia was diagnosed. I have a family history of FMS so knew what I was in for. I was a little deflated but knew again with meds it could be managed for the most part. Then RA was diagnosed....that was 2.5 months ago.
Illness has taken over my life. First it was figuring out what was wrong, then treating what is wrong and the medications make me feel worse than I did to start. I am still not feeling any better. My life as I have known it for the past 40 years was over. But life was supposed to begin at 40...didn't my body get that memo?
Medication, Dr's appointments, tests and medication refills is what my life has become. Every single thing I choose to do in a day has a cost associated to it. Learning the economics of Chronic Illness has become my new reality. I am slowly learning to understand this new and uncooperative body of mine. I am learning to adjust daily activities to allow me to get the most done in a single day. Sadly most days I can commit to getting just a couple of small things done. Most days getting up and making my bed takes all the energy I have. Making kids lunches and getting them ready and out the door to school exhausts me. Once they are off, I log into work from my computer and make sure nobody is looking for me and then I curl up on the couch and rest while keeping half an eye on work. I now take showers only when my husband is home to help me in and out and of course to wash and condition my hair as I can no longer squeeze shampoo bottles. I keep saying I need to put my shampoo etc. into pumps...but I stay as far away from stores as possible. The walking (honestly less of walking more like shuffling), the looks from people who see a young woman with nothing visibly wrong (you would actually have to look closer than passersby bother to give) but clearly in immense pain, limping, shuffling along with her cane or leaning on a buggy for support. I would rather not go through that and don't for the most part. My husband does 99% of all of the shopping.
Speaking of shopping Christmas is just around the corner and it brings tears to my eyes. The overwhelming thought of trying to get all of my shopping done...sigh. I guess this year we will be trying out on-line shopping and hoping for the best. Oops sorry for the diversion but my daughter comes by her ADD (Attention Deficit Disorder) naturally!
Somewhere in the past year living stopped. Yes, technically I still breath and I am alive but I am watching life pass by with me as a bystander rather than an active participant. When my diagnosis took the wind out of my sails and my life became about learning how to live in a body that was no longer to be counted on I got lost along the way. My dreams were gone, I threw my hands in the air and focused on just getting through the day usually focused on getting through each individual hour minute by minute. I didn't consciously think of my dreams again until October 5th when Deb's blog reduced me to tears.
I have had a difficult few weeks since Deb's post. I have added being sick to my stomach daily which drains the life right out of me. At first I thought I caught a bug but since it does not get worse and the symptoms can be accounted for by active RA and medication side effects I am beginning to think I am wrong. Off to see the Dr. soon to get his opinion. I just have to find the energy to make that appointment. During this time I did however have time to think. Rather than feeling sorry for myself I focused on two things 1) Coming to terms with my diagnosis' which I will share with you in another blog. 2) What were my dreams? Are they still my dreams? What do I have to change to make those dreams possible even with my current limitations?
While I am still figuring out some things, there is one thing I do know. One must have dreams, ambitions and a purpose to life. We all need a reason to get up each and every day. My reason for living is my family: my husband, my children, my parents, my brother. One of my dreams was to work on completing a novel. There is a contest that begins November, the goal: to complete a novel in 30 days. I think it is time for me to find the links again and outline my novel and be ready to go in November. :)
A heart felt thanks to Deb for reminding me that although this is not the life I had planned on living it doesn't mean my life is not worth living! What are you dreams? What makes you get out of bed each and every day to face the world no matter how you are feeling?
© 2011 Rhonda
Welcome back...told you it was a very worthwhile read :-)
Deb really hit the nail on the head. October 2010 is when my health started to fall apart. Then I had the first two weeks of January where I thought finally things were turning around. Little did I know that I had two weeks to enjoy the last bit of "health" I will have for a long time. Since mid January I have been ill. Desperately looking for what was wrong. Reminding myself daily that the chronic pain, fatigue and a myriad of other strange occurrences were untreated. If I could just get a diagnosis things would go back to normal. I WOULD get my life back. It took 10 months and I had all three diagnosis. For those of you who are new to my blog they are: Hashimotos Thyroiditis, Fibromyalgia and Rheumatoid Arthritis. The hashimotos was promising a single pill a day and my thyroid would function normally...awesome...but I was wrong. My Dr. knew what I refused to believe that there was much more to this. 2 months later the Fibromyalgia was diagnosed. I have a family history of FMS so knew what I was in for. I was a little deflated but knew again with meds it could be managed for the most part. Then RA was diagnosed....that was 2.5 months ago.
Illness has taken over my life. First it was figuring out what was wrong, then treating what is wrong and the medications make me feel worse than I did to start. I am still not feeling any better. My life as I have known it for the past 40 years was over. But life was supposed to begin at 40...didn't my body get that memo?
Medication, Dr's appointments, tests and medication refills is what my life has become. Every single thing I choose to do in a day has a cost associated to it. Learning the economics of Chronic Illness has become my new reality. I am slowly learning to understand this new and uncooperative body of mine. I am learning to adjust daily activities to allow me to get the most done in a single day. Sadly most days I can commit to getting just a couple of small things done. Most days getting up and making my bed takes all the energy I have. Making kids lunches and getting them ready and out the door to school exhausts me. Once they are off, I log into work from my computer and make sure nobody is looking for me and then I curl up on the couch and rest while keeping half an eye on work. I now take showers only when my husband is home to help me in and out and of course to wash and condition my hair as I can no longer squeeze shampoo bottles. I keep saying I need to put my shampoo etc. into pumps...but I stay as far away from stores as possible. The walking (honestly less of walking more like shuffling), the looks from people who see a young woman with nothing visibly wrong (you would actually have to look closer than passersby bother to give) but clearly in immense pain, limping, shuffling along with her cane or leaning on a buggy for support. I would rather not go through that and don't for the most part. My husband does 99% of all of the shopping.
Speaking of shopping Christmas is just around the corner and it brings tears to my eyes. The overwhelming thought of trying to get all of my shopping done...sigh. I guess this year we will be trying out on-line shopping and hoping for the best. Oops sorry for the diversion but my daughter comes by her ADD (Attention Deficit Disorder) naturally!
Somewhere in the past year living stopped. Yes, technically I still breath and I am alive but I am watching life pass by with me as a bystander rather than an active participant. When my diagnosis took the wind out of my sails and my life became about learning how to live in a body that was no longer to be counted on I got lost along the way. My dreams were gone, I threw my hands in the air and focused on just getting through the day usually focused on getting through each individual hour minute by minute. I didn't consciously think of my dreams again until October 5th when Deb's blog reduced me to tears.
I have had a difficult few weeks since Deb's post. I have added being sick to my stomach daily which drains the life right out of me. At first I thought I caught a bug but since it does not get worse and the symptoms can be accounted for by active RA and medication side effects I am beginning to think I am wrong. Off to see the Dr. soon to get his opinion. I just have to find the energy to make that appointment. During this time I did however have time to think. Rather than feeling sorry for myself I focused on two things 1) Coming to terms with my diagnosis' which I will share with you in another blog. 2) What were my dreams? Are they still my dreams? What do I have to change to make those dreams possible even with my current limitations?
While I am still figuring out some things, there is one thing I do know. One must have dreams, ambitions and a purpose to life. We all need a reason to get up each and every day. My reason for living is my family: my husband, my children, my parents, my brother. One of my dreams was to work on completing a novel. There is a contest that begins November, the goal: to complete a novel in 30 days. I think it is time for me to find the links again and outline my novel and be ready to go in November. :)
A heart felt thanks to Deb for reminding me that although this is not the life I had planned on living it doesn't mean my life is not worth living! What are you dreams? What makes you get out of bed each and every day to face the world no matter how you are feeling?
© 2011 Rhonda
My Children Have A Job
My children have a job. Their job is to be a student. They are to go to school each and every day that school is open in order to get their education. It is this education that is going to allow them to be whatever they want to be in life. Education opens doors and in today's society you won't get very far without one. We are so very lucky to live in a Country where education is provided and is a right for each and every child. We have a local school which is less than a ten minute walk from our house.
My children are in grades 4 and 5 and are not getting the education that we send them to school for. How can this be in 2011? What gets in the way of learning each and everyday that my children attend school? The school is open, the teachers teach and the children attend everyday, they have their school supplies, text books, note books, pens and pencils. They are smart, creative, compassionate etc ... so it should be simple to learn right? Wrong
Quite simply a child cannot learn when they are afraid. When they are worried about what happened yesterday, when they worry about what will happen at recess and or lunch. Their minds are focused but not on what they are being taught. It causes a distraction that is hard to bypass. It interferes with sleep in the form of nightmares. What is the cause of this fear you ask. Bullying.
Bullying has changed my children. My youngest daughter was so severely bullied in Grade One that she developed a severe anxiety disorder. Our local children's mental health center said they had never seen a child so young with anxiety so severe. Her anxiety is a total body experience. We have worked very hard to deal with her anxiety and she has come a very long way. She is now able to do things in spite of the anxiety. She feels it, acknowledges it and then does things anyway. So very proud of her :) On top of that she has Attention Deficit Disorder (ADD). Her teacher last year declared her unteachable without medication. The medication intervention was successful last year but is not working the way the teacher would like this year. The answer is not to increase medication as much as the school would like us to. The medication allows her to focus but of course does not pick and choose what she focuses on. Right now she is focused on the bully that is in her classroom. She watches her every move for fear that she will strike again. She has been physically aggressive with my daughter, threatens her and bangs her desk every time she walks by it. If she is not thinking about the times she has been pushed, hit, threatened to have the glasses ripped off her face, broke in half and thrown away she is thinking about what will happen the next time. Will it be at the next recess, at lunch, afternoon recess, on her way home??
My ten year old son just last week informed me that bullying happens every day and teachers do nothing about it. He is not sleeping at night as his sleep is disrupted with nightmares about the group of kids in his class that are bullying him. He has been kicked, punched in the ribs, had soccer balls thrown in his face, he is told daily that he is stupid, fat and that he sucks at all sports. They make up stories and spread rumors about him and embarrass him in front of his whole class.
When I sent my son and daughter to begin their education they were full of joy and wonder. They were smart, creative, out going, fun loving, ready for challenges, full of spirit, caring and compassionate children. As a result of physical violence, name calling and put downs my children are quiet, withdrawn, refuse to participate for fear of giving these kids more ammunition regardless of how smart they are they no longer are willing to put themselves out there. There self esteem and feelings of self worth have been taken by these thieves. By Sunday night the tears begin at bedtime with thoughts of going to school in the morning. The struggle to get them through their morning routines and out the door to school is becoming increasingly difficult.
My husband and I have talked at length, consulted their doctors/therapists and have come to the conclusion that home schooling might be the answer to what we have been looking for. Could this be the silver lining in my illness? The opportunity to provide my children with a an education in an environment that will respect them, love them and provide opportunities for success and rebuild self esteem and self worth.
The school knows me well. I am an involved parent. They are out numbered 651 students to a staff of 35. It is a supervision issue. They have contacted families only to find the child is a reflection of their parents. These parents see nothing wrong with their children's behaviour and encourage it. They have acknowledged that they cannot keep my children safe. They are limited in what they can do in these situations. They also acknowledge the number of children who have taken their own lives as a result of being bullied at school. We had an incident in September in a neighbouring town where a child took his own life rather than start grade six the next morning. They know it is serious, they have an anti-bullying program in place...they try...they fail.
Everyone we have discussed this with has been in support of this decision. I know the kids will miss their friends and teachers. I don't think that friends and teachers are reason enough to subject them to the bullying that they have dealt with up to this point. We have had a few family discussions about home schooling. Getting a feel for what the kids think about it. The initial reaction to the subject of home schooling was relief, where do we sign up kind of thing. Then came questions and now they just don't know. It would be wonderful to not have to dealing with bullying but missing their friends is a big deal. They are torn....we want to do it but can we start after report cards come out in November, then this morning maybe we could stay in school until December. So one of two things is happening. 1. They are feeling wonderfully supported and their feelings have been validated and that makes going to school easier on a day to day basis and managing what is happening. 2. They have had a good week as far as Bullying goes. When it is good it's good and when it is bad it is HORRIBLE. They don't know what they want and we as parents are torn it is difficult to know what is best long term. We have explained to the kids that we were exploring this alternative, gathering information so we can make an informed decision and ultimately the decision is ours. It is too big a decision to place on children of this age.
Do we home school for 6 months and see if it is what is best for our family? In that time can we get their confidence and self esteem back. If it is decided that they want to return to school will they then have the tools they need to deal with the situations that they are going to encounter. I don't want to send the message that if things are tough that the best solution is to walk away. Sometimes parenting is just tough. There are difficult decisions to be made.
What do you think? Do you home school or know someone who home schools? Will my RA/Fibro allow me to provide the education that they deserve? I would love to hear your thoughts on the subject.
I look forward to hearing from you! Hope you are having a wonderful week.
© 2011 Rhonda
My children are in grades 4 and 5 and are not getting the education that we send them to school for. How can this be in 2011? What gets in the way of learning each and everyday that my children attend school? The school is open, the teachers teach and the children attend everyday, they have their school supplies, text books, note books, pens and pencils. They are smart, creative, compassionate etc ... so it should be simple to learn right? Wrong
Quite simply a child cannot learn when they are afraid. When they are worried about what happened yesterday, when they worry about what will happen at recess and or lunch. Their minds are focused but not on what they are being taught. It causes a distraction that is hard to bypass. It interferes with sleep in the form of nightmares. What is the cause of this fear you ask. Bullying.
Bullying has changed my children. My youngest daughter was so severely bullied in Grade One that she developed a severe anxiety disorder. Our local children's mental health center said they had never seen a child so young with anxiety so severe. Her anxiety is a total body experience. We have worked very hard to deal with her anxiety and she has come a very long way. She is now able to do things in spite of the anxiety. She feels it, acknowledges it and then does things anyway. So very proud of her :) On top of that she has Attention Deficit Disorder (ADD). Her teacher last year declared her unteachable without medication. The medication intervention was successful last year but is not working the way the teacher would like this year. The answer is not to increase medication as much as the school would like us to. The medication allows her to focus but of course does not pick and choose what she focuses on. Right now she is focused on the bully that is in her classroom. She watches her every move for fear that she will strike again. She has been physically aggressive with my daughter, threatens her and bangs her desk every time she walks by it. If she is not thinking about the times she has been pushed, hit, threatened to have the glasses ripped off her face, broke in half and thrown away she is thinking about what will happen the next time. Will it be at the next recess, at lunch, afternoon recess, on her way home??
My ten year old son just last week informed me that bullying happens every day and teachers do nothing about it. He is not sleeping at night as his sleep is disrupted with nightmares about the group of kids in his class that are bullying him. He has been kicked, punched in the ribs, had soccer balls thrown in his face, he is told daily that he is stupid, fat and that he sucks at all sports. They make up stories and spread rumors about him and embarrass him in front of his whole class.
When I sent my son and daughter to begin their education they were full of joy and wonder. They were smart, creative, out going, fun loving, ready for challenges, full of spirit, caring and compassionate children. As a result of physical violence, name calling and put downs my children are quiet, withdrawn, refuse to participate for fear of giving these kids more ammunition regardless of how smart they are they no longer are willing to put themselves out there. There self esteem and feelings of self worth have been taken by these thieves. By Sunday night the tears begin at bedtime with thoughts of going to school in the morning. The struggle to get them through their morning routines and out the door to school is becoming increasingly difficult.
My husband and I have talked at length, consulted their doctors/therapists and have come to the conclusion that home schooling might be the answer to what we have been looking for. Could this be the silver lining in my illness? The opportunity to provide my children with a an education in an environment that will respect them, love them and provide opportunities for success and rebuild self esteem and self worth.
The school knows me well. I am an involved parent. They are out numbered 651 students to a staff of 35. It is a supervision issue. They have contacted families only to find the child is a reflection of their parents. These parents see nothing wrong with their children's behaviour and encourage it. They have acknowledged that they cannot keep my children safe. They are limited in what they can do in these situations. They also acknowledge the number of children who have taken their own lives as a result of being bullied at school. We had an incident in September in a neighbouring town where a child took his own life rather than start grade six the next morning. They know it is serious, they have an anti-bullying program in place...they try...they fail.
Everyone we have discussed this with has been in support of this decision. I know the kids will miss their friends and teachers. I don't think that friends and teachers are reason enough to subject them to the bullying that they have dealt with up to this point. We have had a few family discussions about home schooling. Getting a feel for what the kids think about it. The initial reaction to the subject of home schooling was relief, where do we sign up kind of thing. Then came questions and now they just don't know. It would be wonderful to not have to dealing with bullying but missing their friends is a big deal. They are torn....we want to do it but can we start after report cards come out in November, then this morning maybe we could stay in school until December. So one of two things is happening. 1. They are feeling wonderfully supported and their feelings have been validated and that makes going to school easier on a day to day basis and managing what is happening. 2. They have had a good week as far as Bullying goes. When it is good it's good and when it is bad it is HORRIBLE. They don't know what they want and we as parents are torn it is difficult to know what is best long term. We have explained to the kids that we were exploring this alternative, gathering information so we can make an informed decision and ultimately the decision is ours. It is too big a decision to place on children of this age.
Do we home school for 6 months and see if it is what is best for our family? In that time can we get their confidence and self esteem back. If it is decided that they want to return to school will they then have the tools they need to deal with the situations that they are going to encounter. I don't want to send the message that if things are tough that the best solution is to walk away. Sometimes parenting is just tough. There are difficult decisions to be made.
What do you think? Do you home school or know someone who home schools? Will my RA/Fibro allow me to provide the education that they deserve? I would love to hear your thoughts on the subject.
I look forward to hearing from you! Hope you are having a wonderful week.
© 2011 Rhonda
Friday, October 14, 2011
Rheumatology Appointment
Frustration is the name of the game. I saw my Rheumatologist yesterday and I have come home very unhappy with the outcome of the appointment. My first appointment was an assessment and tests. At that appointment she diagnosed me with Fibromyalgia. My second appointment was a result of my test results and I was called in and diagnosed with Rheumatoid Arthritis after I had a High Anti-CCP in my blood work and had developed numerous rheumatoid nodules the week before. I was started on Plaquinel and Methotrexate and a follow up appointment was scheduled for 2 months later. So yesterday I went to my follow up appointment.
I am sad to say that she was more focused on the paperwork in my file than listening to me. I asked questions, pointed out deformities in my feet and the difficulties I have walking as a result of toes that curl under, a big toe that is on a new angle and lays across the toe next to it, the swelling on the balls of my feet making it feel like walking on marbles and the burning in my feet when I stand more than 5 minutes. I have had no improvement in the past two months since I started medication. She completely ignored my feet, assessed my hands, charted and offered a shot in my hip (which I had complained of last time but hadn't gotten around to this time). While giving me a shot in my hip (no idea what it was) I was mentioning the itchy joints that I have, the fact that my hands won't straighten and are in a constant bent position. My bones near affected joints appear to have exploded and are 2-3x the normal size...she continued to ignor everything I said and declared I should go to a pain clinic because my Fibro was out of control, my RA is fine because there is no visible swelling so my meds will stay the same, because of joint and muscle pain she has declared I have amplified pain syndrome.
I come home to research amplified pain syndrome which declared that while the cause of pain is gone the central nervous system retains memory of pain where there is no cause...HOW ON EARTH CAN THERE BE NO CAUSE OF PAIN WITH A DX of RA and FIBROMYALGIA THAT HAS CAUSED DEFORMITY AND DISABILITY???? She see me back in 4 months at which time they will ultrasound to see if there is internal swelling and I should have an MRI of my hands and feet in that time. They have flagged my file because in 2 months they have managed to not yet book me an appointment. I am extremely frustrated and upset with all of this. I am seeing a top Doctor's at Mount Sinani Hospital in Toronto. Jay Keystone heads up this clinic (not my Dr though) and it is supposed to be one of the top in Canada and IS the TOP Rheumatology and Autoimmune Clinic in the province!!
My family Dr, two weeks ago told me that he could see more changes in my hands and feet since my x-rays (which would have been two weeks after the x-rays were completed) and that he really hoped she started treatment with a Biologic when I saw her as that is my best hope to stop the damage. What on earth am I going to do? Do I ask my family Dr. to make a new referral for a second opinion or do I stick this out for another appointment or two and see if this was just an off day for her?? I just don't want more damage to occur because she is not sure about what to do with me not being a text book RA patient! I had so much more to talk to her about but since she was ignoring me I gave up...Very frustrated at the moment.
Okay rant over...any suggestions would be greatly appreciated!!
© 2011 Rhonda
I am sad to say that she was more focused on the paperwork in my file than listening to me. I asked questions, pointed out deformities in my feet and the difficulties I have walking as a result of toes that curl under, a big toe that is on a new angle and lays across the toe next to it, the swelling on the balls of my feet making it feel like walking on marbles and the burning in my feet when I stand more than 5 minutes. I have had no improvement in the past two months since I started medication. She completely ignored my feet, assessed my hands, charted and offered a shot in my hip (which I had complained of last time but hadn't gotten around to this time). While giving me a shot in my hip (no idea what it was) I was mentioning the itchy joints that I have, the fact that my hands won't straighten and are in a constant bent position. My bones near affected joints appear to have exploded and are 2-3x the normal size...she continued to ignor everything I said and declared I should go to a pain clinic because my Fibro was out of control, my RA is fine because there is no visible swelling so my meds will stay the same, because of joint and muscle pain she has declared I have amplified pain syndrome.
I come home to research amplified pain syndrome which declared that while the cause of pain is gone the central nervous system retains memory of pain where there is no cause...HOW ON EARTH CAN THERE BE NO CAUSE OF PAIN WITH A DX of RA and FIBROMYALGIA THAT HAS CAUSED DEFORMITY AND DISABILITY???? She see me back in 4 months at which time they will ultrasound to see if there is internal swelling and I should have an MRI of my hands and feet in that time. They have flagged my file because in 2 months they have managed to not yet book me an appointment. I am extremely frustrated and upset with all of this. I am seeing a top Doctor's at Mount Sinani Hospital in Toronto. Jay Keystone heads up this clinic (not my Dr though) and it is supposed to be one of the top in Canada and IS the TOP Rheumatology and Autoimmune Clinic in the province!!
My family Dr, two weeks ago told me that he could see more changes in my hands and feet since my x-rays (which would have been two weeks after the x-rays were completed) and that he really hoped she started treatment with a Biologic when I saw her as that is my best hope to stop the damage. What on earth am I going to do? Do I ask my family Dr. to make a new referral for a second opinion or do I stick this out for another appointment or two and see if this was just an off day for her?? I just don't want more damage to occur because she is not sure about what to do with me not being a text book RA patient! I had so much more to talk to her about but since she was ignoring me I gave up...Very frustrated at the moment.
Okay rant over...any suggestions would be greatly appreciated!!
© 2011 Rhonda
Wednesday, October 12, 2011
World Arthritis Day - 140-39-40
Today is World Arthritis Day any other year I would not even known this little fact. Not surprised, there is a day for everything it seems. However this is a cause that has become near and dear to my heart. In one short year my life has turned upside down and inside out and it is in large part to my Rheumatoid Arthritis. I knew next to nothing about RA before I was diagnosed. I was called in and told I tested positive for RA with a high anti-ccp. The lumps and bumps I had discovered the week before my appointment were confirmed as rheumatoid nodules. I was told this indicated severe RA along with my high anti-ccp. There are no cures but medications (DMARDS - Disease Modifying Anti-Rheumatic Drugs) such as methotrexate and plaquinel were prescribed and then other medications to counter act the side effects of the first two. It is important to try to slow the disease down so it calls for heavy duty pharmaceutical intervention. A referral to the Arthritis Society was made for Occupational Therapy and Social Work and I was on my way home.
I was left to learn about my diagnosis on my own. Where does a person in 2011 turn to to get medical information...you got it...the internet! Well that was an eye opener. There is a lot of information out there that is either a) just not true or b) Full of old wives tails or c) out dated and most importantly for me there was little to no Canadian information on the subject. In the midst of it all we had high profile Dr's such as Dr. Phill McGraw who had publicly declared that RA was as a result of obesity, utter nonsense but out there just the same. I am pleased to say the e-mail campaign that RA suffers mounted has paid off Dr. Phil recants his previous statements in todays blog http://blog.drphil.com/2011/10/12/world-arthritis-day/ saying he misspoke...I guess the best we can hope for. At least he stood up and made right the information.
I was already dealing with the Hashimotos and Fibromyalgia diagnosis and two weeks later came the RA diagnosis. I was spinning and my body was and remains out of control.
My emotions have been all over the map since my diagnosis with the primary theme being depression. My body continues to betray me on a daily basis. I am declining quickly and the difference from where I was this time last year to where I am today is so dramatically different you wouldn't believe you were talking about the same person. The chronic pain, the chronic fatigue take a toll so great you cannot begin to imagine unless you have experienced it first hand. I wish that fate on nobody. Nobody should have to live like this.
I have continued to research RA, Fibromyalgia and Hashimoto's and I am thinking about how one person can make a difference in the awareness of all of these diseases. I then look at Kelly Young from RAWarrior and the new Rheumatoid Patient Foundation (USA) and realize that one person can make a huge difference in peoples lives. This inspires me...I just need to slow down to figure out what I am going to do with all of this.
Amazing how little we know unless we are directly impacted by them. Arthritis accounts for most of the disability claims in north america and yet very little is spent on research in comparison to other diseases such as breast cancer which affects relatively few in comparison. I am not comparing diseases just the lack of research funds and awareness. The only difference is the AWARENESS and FUNDRAISING campaigns. Today we raise awareness and with awareness will come the ability to raise the much needed funds towards a cure!
© 2011 Rhonda
I was left to learn about my diagnosis on my own. Where does a person in 2011 turn to to get medical information...you got it...the internet! Well that was an eye opener. There is a lot of information out there that is either a) just not true or b) Full of old wives tails or c) out dated and most importantly for me there was little to no Canadian information on the subject. In the midst of it all we had high profile Dr's such as Dr. Phill McGraw who had publicly declared that RA was as a result of obesity, utter nonsense but out there just the same. I am pleased to say the e-mail campaign that RA suffers mounted has paid off Dr. Phil recants his previous statements in todays blog http://blog.drphil.com/2011/10/12/world-arthritis-day/ saying he misspoke...I guess the best we can hope for. At least he stood up and made right the information.
I was already dealing with the Hashimotos and Fibromyalgia diagnosis and two weeks later came the RA diagnosis. I was spinning and my body was and remains out of control.
My emotions have been all over the map since my diagnosis with the primary theme being depression. My body continues to betray me on a daily basis. I am declining quickly and the difference from where I was this time last year to where I am today is so dramatically different you wouldn't believe you were talking about the same person. The chronic pain, the chronic fatigue take a toll so great you cannot begin to imagine unless you have experienced it first hand. I wish that fate on nobody. Nobody should have to live like this.
I have continued to research RA, Fibromyalgia and Hashimoto's and I am thinking about how one person can make a difference in the awareness of all of these diseases. I then look at Kelly Young from RAWarrior and the new Rheumatoid Patient Foundation (USA) and realize that one person can make a huge difference in peoples lives. This inspires me...I just need to slow down to figure out what I am going to do with all of this.
Amazing how little we know unless we are directly impacted by them. Arthritis accounts for most of the disability claims in north america and yet very little is spent on research in comparison to other diseases such as breast cancer which affects relatively few in comparison. I am not comparing diseases just the lack of research funds and awareness. The only difference is the AWARENESS and FUNDRAISING campaigns. Today we raise awareness and with awareness will come the ability to raise the much needed funds towards a cure!
© 2011 Rhonda
Tuesday, October 4, 2011
World Arthritis Day - Wednesday October 12, 2011
This afternoon while reading the latest blog entry from RAGUY I learned that Wednesday October 12, 2011 is World Arthritis Day. I went to their website , clicked on the purple tab: WAD Around The World and clicked on the link for Toronto, Ontario (Canada). I was directed to our local provincial chapter of the Arthritis Society...to my surprise there was NO MENTION of World Arthritis Day on their home page, or any where on their website. I even did an advanced search and came up empty.
Last time I checked Canada was still part of the World...sheesh talk about further isolating individuals with arthritis than they already are. We should be shouting from the roof tops taking and making opportunity to raise awareness and educate people around Arthritis and the numerous diseases that often accompany an arthritis diagnosis. Did you know there are over 100 different types of arthritis? The majority of people who hear the word arthritis automatically think of Osteoarthritis and NOT of the much more severe auto-immune varieties such as Rheumatoid Arthritis.
I am so frustrated to learn that they (Ontario Chapter of the Arthritis Society) do not appear to be taking part in Education and Awareness on this day. World Arthritis Day was established in 1996 by Arthritis and Rheumatism International (ARI) and is celebrated each year on the 12th of October. So this is nothing new. I frequently visit our Provincial Chapter for information, services and headline news to ensure I am current. It has been the only source for Canadian content that I have found so far andI have researched too many hours to count since my diagnosis.
In most cases the information and issues surrounding Rheumatoid Arthritis, Fibromyalgia and Auto Immune Diseases in general comes from the USA and Europe. While the support gathered on message boards/facebook pages gives a wonderful sense of community there are: differences, challenges and ways of doing things unique to each Country/State/Province. I personally subscribe to numerous blogs and web sites for information and personal experiences and wish I had a resource for some things that are specifically Canadian. Please know that in no way does this take away from all of the communities that I belong to that are from other countries. These families created by sharing experiences have been a life line for me. I am just looking to round out the information if that makes any sense.
According to the Arthritis Society, Fibromyalgia is also under the umbrella of arthritis although not considered auto-immune it often travels with auto-immune related diseases. This means that two out of my three of my diagnosis are Arthritic/Rheumatic in nature. I feel an obligation to try to raise awareness and educate. This diagnosis blind sided me because I really had no idea of the severity of RA and was honestly gobsmacked to learn there are over 100 types of Arthritis and 100+ Auto-Immune Diseases. I never would have believed that morbidity rates and arthritis belonged together in any way. Boy did I have a lot to learn!
It was suggested to me that since I was so provoked with the lack of Canadian content that I should create a website for Rheumatoid Arthritis /Auto-Immune Education, Awareness and Support with information relevant to the Canadian experience. Today after seeing that our very own Arthritis Society isn't even using the World Arthritis Day to promote education and awareness I am seriously considering it! What do you think?
How will you support World Arthritis Day on Wednesday, October 12th, 2011? Remember you can donate to The Rheumatoid Patient Foundation this is a new organization and donations are very appreciated. If you click on the link you can read what they are currently raising much needed funds for. If you are unable to donate remember you can still help to spread awareness and to educate others. RA Guy has suggested that we share his 60 Second Guide to RA which you can view/print from here.
Perhaps you will be writing a blog in support of WAD. Please be sure to let me know by October 11th, so I can write a blog to be published at midnight of the 12th and let readers know what blogs to read on the 12th in honour of WAD. We can make a difference through education and awareness!!
Remember the Chinese proverb "Many hands make light work". I look forward to hearing from you!
© 2011 Rhonda
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