Quotes have a wonderful way of inspiring individuals in many different ways. Over the years there have been a series of quotes that have stood the test of time and helped me to find strength I needed to carry on. I thought these might be a wonderful way to end the year and to prepare for the upcoming year ahead.
God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference!- Unknown
Destiny is not a matter of chance, It is a matter of choice, It is not something to be waited for, But rather something to be achieved. - William Jennings Bryan
Be the change you want to see in the world - Mahatma Ghandhi
Dream as if you'll live forever. Live as if you'll die today - James Dean
When the student is ready the teacher will appear - Buddhist Proverb
Minds are like parachutes they only function when they are open - Thomas Dewar
You become what you think about - Earl Nightingale
To "try" is failure with honour - Unknown
If it is going to be, then it is up to me - Unknown
Some days your the dog, some days your the hydrant - Unknown but makes me smile
Worrying does not empty tomorrow of its troubles…. it empties today of its strength. - Corrie Ten Boom
Worry is like a rocking chair, it gives you something to do but you don't get anywhere - unknown
I hope that some of these quotes are new to you and add some strength to your day. ((HUGS)) Thanks for sticking around through this crazy year. There will be one more post this year (so I had best get to it) for a blog carnival that RAWarrior is holding on pain. After that I will see you on January first with my first of 30 blogs for the month. There seem to be a few of us out there with this in mind. Perhaps I will hook up with one of the challenges that is going on which will help with making sure I don't run out of topics :) Have a great day!
© 2011 Rhonda
Friday, December 30, 2011
Christmas & Health
The house is quiet for the first time in a very long time. My husband and children have headed north to spend the day tobogganing with my husbands oldest daughter, her hubby and of course our grandchildren. I am sorry to once again stay home but I just don't do long drives very well. Not to mention it is one day where they can escape my illness and not have to consider my ability into their planning. It is a day away from illness :) I wish I could take a day away from it but that is not very likely to happen. I suppose if I got on the right mixture of medications it is possible but that just feels like a dream at this point in time.
Christmas was WONDERFUL and I am so pleased to have little ones who make the season that much more special. They declared this the BEST CHRISTMAS EVER and do so every year! They were so appreciative of all of their gifts, our Christmas Eve family get togethers and Christmas Dinner with my parents, brother and nephew. Now the excitement is for New Years Eve. They want to have a party..lol What this means is my parents over for the evening to play cards with my hubby and I. If you have anyone over, and there is food and snacks it is a party...lol I wonder if I will last through the evening playing cards. I sure hope so. Mind you my mom is quite sick with a chest infection right now so not even sure they will make it. If not the four of us will bring in the new year playing games.
Santa once again provided our family with year round passes for the Toronto Zoo and The Ontario Science Centre. This two passes will be great with home schooling the kids. We get to have field trips too :)
My hubby scored big points by purchasing me a kobo vox which is a tablet / e-reader. This is solved my issues with not being able to hold my books or turn pages. I can read again and that is such a wonderful gift. My kids were so impressed with my e-reader they used their Christmas money and saved up allowance to purchase their own! I love that I have instilled the desire to read into my children. Reading is a truly wonderful gift. It can transport me into another world where I can be distracted from my pain even if only for a little while.
As for a health update - I have not been doing very well these past few weeks. I am so glad that all of my shopping was done early this year! My Rheumy is very concerned about my lungs and ordered a lung CT. The last one I had in May before my diagnosis noted nodules and a thickening of the plurel of my lung. Now that we know I have a severe form of RA it is assumed they are rheumatoid nodules on my lung. She believes I have what is called Rheumatoid Lung. If that is the case I won't be able to take biologics, methotrexate and a host of other RA meds. If I understand correctly I will be down to just pain meds and the RA will run rampant without any medication to slow it down. This is a very scary prospect as I wait for my results. I will see my Rheumy on the 20th for the results which feels like a very long time from now. I know it isn't but if my lungs are as bad as my rheumy suspects then I am in for a very painful future. That is overwhelming when I am having such a difficult time with taking RA meds. I will try not to wallow in what could be and stay focused on the here and now but I won't lie it is difficult.
I have been giving a lot of thought to 2012 and what I want to accomplish. On the bright side I have learned what is wrong with me and I am being treated by a wonderful Rheumatologist who will do her best by me. I may or may not be able to continue working in 2012. I will continue with homeschooling which is so very important to me and my children. I have always wanted to write a novel and now is as good a time as any to make that happen. I have decided that NaNoWrMo is too fast paced for the unpredictability of my illness. I signed up and failed miserably with another difficult month with my RA. So this time I have a plan: I will spend time in January writing my outline and on character development and I will take it from there. I am in no hurry and will take my time to make this happen. It has been a life long dream and it is time to make it a reality. My other goal for 2012 is to dedicate more time to this blog and hopefully adding something of substance back to the RA Community. I am going to aim for 30 blogs in 30 days and see how that goes. Perhaps I can bring the subscriptions to this blog up from the single digits..lol
What are you goals for 2012? Do you make resolutions? Are you able to stick to them? I would love to hear from you.
© 2011 Rhonda
Christmas was WONDERFUL and I am so pleased to have little ones who make the season that much more special. They declared this the BEST CHRISTMAS EVER and do so every year! They were so appreciative of all of their gifts, our Christmas Eve family get togethers and Christmas Dinner with my parents, brother and nephew. Now the excitement is for New Years Eve. They want to have a party..lol What this means is my parents over for the evening to play cards with my hubby and I. If you have anyone over, and there is food and snacks it is a party...lol I wonder if I will last through the evening playing cards. I sure hope so. Mind you my mom is quite sick with a chest infection right now so not even sure they will make it. If not the four of us will bring in the new year playing games.
Santa once again provided our family with year round passes for the Toronto Zoo and The Ontario Science Centre. This two passes will be great with home schooling the kids. We get to have field trips too :)
My hubby scored big points by purchasing me a kobo vox which is a tablet / e-reader. This is solved my issues with not being able to hold my books or turn pages. I can read again and that is such a wonderful gift. My kids were so impressed with my e-reader they used their Christmas money and saved up allowance to purchase their own! I love that I have instilled the desire to read into my children. Reading is a truly wonderful gift. It can transport me into another world where I can be distracted from my pain even if only for a little while.
As for a health update - I have not been doing very well these past few weeks. I am so glad that all of my shopping was done early this year! My Rheumy is very concerned about my lungs and ordered a lung CT. The last one I had in May before my diagnosis noted nodules and a thickening of the plurel of my lung. Now that we know I have a severe form of RA it is assumed they are rheumatoid nodules on my lung. She believes I have what is called Rheumatoid Lung. If that is the case I won't be able to take biologics, methotrexate and a host of other RA meds. If I understand correctly I will be down to just pain meds and the RA will run rampant without any medication to slow it down. This is a very scary prospect as I wait for my results. I will see my Rheumy on the 20th for the results which feels like a very long time from now. I know it isn't but if my lungs are as bad as my rheumy suspects then I am in for a very painful future. That is overwhelming when I am having such a difficult time with taking RA meds. I will try not to wallow in what could be and stay focused on the here and now but I won't lie it is difficult.
I have been giving a lot of thought to 2012 and what I want to accomplish. On the bright side I have learned what is wrong with me and I am being treated by a wonderful Rheumatologist who will do her best by me. I may or may not be able to continue working in 2012. I will continue with homeschooling which is so very important to me and my children. I have always wanted to write a novel and now is as good a time as any to make that happen. I have decided that NaNoWrMo is too fast paced for the unpredictability of my illness. I signed up and failed miserably with another difficult month with my RA. So this time I have a plan: I will spend time in January writing my outline and on character development and I will take it from there. I am in no hurry and will take my time to make this happen. It has been a life long dream and it is time to make it a reality. My other goal for 2012 is to dedicate more time to this blog and hopefully adding something of substance back to the RA Community. I am going to aim for 30 blogs in 30 days and see how that goes. Perhaps I can bring the subscriptions to this blog up from the single digits..lol
What are you goals for 2012? Do you make resolutions? Are you able to stick to them? I would love to hear from you.
© 2011 Rhonda
Wednesday, December 14, 2011
Christmas 2011
It is amazing but it has taken chronic illness to get me organized around Christmas. Every other year I am still out there a week before Christmas and I am up wrapping gifts into the wee hours of Christmas morning. This year I was done all of my shopping by the end of the first week in December and last weekend my kids spent the night with my mom and dad and I got all of the gifts wrapped...AMAZING to say the least. I have paid the price for all of the wrapping with hands that are extremely sore, swollen and refusing to work properly but I am done and now I can relax between now and Christmas. Not being stressed out over the holiday is very much worth it!
Had it not been for on-line shopping I would never have gotten any shopping done. I actually only physically had to go to two stores and I new exactly what I was getting so it was an in and out. I cannot walk for more than 20 minutes and then I start to drag and if I continue on I have to basically be carried out of the store. Thank goodness for shopping buggies that one can lean on to keep them moving. If I stand still for more than 5 minutes my feet begin to burn. This gets in the way of standing in line, cooking, doing dishes etc. The burning pain is the kind that takes your breath away it is so painful.
This weekend it is my youngest daughter's 9th birthday. She was an early Christmas gift and now she is growing up so fast. I am so happy to have the kids home for schooling and the gift of this time with my kids is more valuable to me than anything else could be. While we are celebrating my daughter's birthday this weekend we also have my step-daughter, son-in-law and two grandchildren here to celebrate Christmas with. It is going to be a whirlwind Christmas Celebrations that last weeks rather than a single day. It is a wonderful, joyous time of year and I try very hard to enjoy and let myself be distracted from the pain. Not so sure that is possible this year but I will do my very best!
The gifts are purchased and wrapped. Thanks to my husband, children and my parents the house is decorated and the tree is trimmed. All that is left is cleaning the house to be ready for company. I am truly blessed to have all of the amazing support that I have. My family is truly remarkable and there for me in each and every way possible. Sometimes I decline their help because well I am stubborn that way. I have been forced to give up hosting Christmas dinner for my family, my parents and my brother's family and the occasional friend who has nobody to spend the holiday with. This year my mom and dad are taking over and hosting Christmas Dinner. It will be so strange not to have a turkey in the oven early Christmas morning. I am sad that I won't be hosting this year. It is just one more thing that these damn diseases have taken from me. I tried to insist I could manage but we all know the reality if I try is that I will spend the following week at a minimum in bed recovering from over doing things. So I will behave, purchase the Turkey for my mom and dad and be grateful that I can enjoy a wonderful Christmas dinner with family without over doing it!
This truly is my favourite time of year! The lights on the Christmas tree are my favourite and I love to sit in the evening with all of the lights out other than the tree lights and I just enjoy. The happiness of children as they purchase gifts for their loved ones and when they receive gifts that people who loved them chose with care. Spending time with loved ones where nobody is in a hurry to be somewhere else. It really is a wonderful time of year. Now if we could have a nice blanket of snow Christmas Eve it would be perfect!
What are your family Christmas traditions? How will you spend Christmas this year?
© 2011 Rhonda
Had it not been for on-line shopping I would never have gotten any shopping done. I actually only physically had to go to two stores and I new exactly what I was getting so it was an in and out. I cannot walk for more than 20 minutes and then I start to drag and if I continue on I have to basically be carried out of the store. Thank goodness for shopping buggies that one can lean on to keep them moving. If I stand still for more than 5 minutes my feet begin to burn. This gets in the way of standing in line, cooking, doing dishes etc. The burning pain is the kind that takes your breath away it is so painful.
This weekend it is my youngest daughter's 9th birthday. She was an early Christmas gift and now she is growing up so fast. I am so happy to have the kids home for schooling and the gift of this time with my kids is more valuable to me than anything else could be. While we are celebrating my daughter's birthday this weekend we also have my step-daughter, son-in-law and two grandchildren here to celebrate Christmas with. It is going to be a whirlwind Christmas Celebrations that last weeks rather than a single day. It is a wonderful, joyous time of year and I try very hard to enjoy and let myself be distracted from the pain. Not so sure that is possible this year but I will do my very best!
The gifts are purchased and wrapped. Thanks to my husband, children and my parents the house is decorated and the tree is trimmed. All that is left is cleaning the house to be ready for company. I am truly blessed to have all of the amazing support that I have. My family is truly remarkable and there for me in each and every way possible. Sometimes I decline their help because well I am stubborn that way. I have been forced to give up hosting Christmas dinner for my family, my parents and my brother's family and the occasional friend who has nobody to spend the holiday with. This year my mom and dad are taking over and hosting Christmas Dinner. It will be so strange not to have a turkey in the oven early Christmas morning. I am sad that I won't be hosting this year. It is just one more thing that these damn diseases have taken from me. I tried to insist I could manage but we all know the reality if I try is that I will spend the following week at a minimum in bed recovering from over doing things. So I will behave, purchase the Turkey for my mom and dad and be grateful that I can enjoy a wonderful Christmas dinner with family without over doing it!
This truly is my favourite time of year! The lights on the Christmas tree are my favourite and I love to sit in the evening with all of the lights out other than the tree lights and I just enjoy. The happiness of children as they purchase gifts for their loved ones and when they receive gifts that people who loved them chose with care. Spending time with loved ones where nobody is in a hurry to be somewhere else. It really is a wonderful time of year. Now if we could have a nice blanket of snow Christmas Eve it would be perfect!
What are your family Christmas traditions? How will you spend Christmas this year?
© 2011 Rhonda
Homeschoooling
We are now into our fourth week of homeschooling. I love seeing the changes in my kids. The confidence, starting to take risks again and self esteem are all slowly returning from non existence. Wanting to work longer and harder. They are having fun learning and are feeling better about learning in an environment where they are safe to make mistakes. They are not teased, not called stupid and not embarrassed by being called upon and they get the answer wrong. Everyone makes mistakes and it is making mistakes that helps us to learn. Mistakes are slowly being seen as human and not a big deal. When we first started schooling from home they were afraid to speak their thoughts out loud for fear they were wrong. With encouragement they began to share and they even began to encourage each other. It has been a really rewarding experience.
The kids actually have asked to do more work when we are finished for the day. They have asked to work ahead. There are kids who hated homework and now they don't want positive learning to end. I never thought I would see the day and it has happened so quickly that I am truly amazed. This is truly a wonderful experience. I have some days were I am so totally unwell that I teach from bed but that doesn't take away from anything. In fact my children are also learning compassion for others.
I am so very proud of who my children are as individuals. They are both wonderfully creative and fun. We are lucky parents indeed.
© 2011 Rhonda
The kids actually have asked to do more work when we are finished for the day. They have asked to work ahead. There are kids who hated homework and now they don't want positive learning to end. I never thought I would see the day and it has happened so quickly that I am truly amazed. This is truly a wonderful experience. I have some days were I am so totally unwell that I teach from bed but that doesn't take away from anything. In fact my children are also learning compassion for others.
I am so very proud of who my children are as individuals. They are both wonderfully creative and fun. We are lucky parents indeed.
© 2011 Rhonda
Wednesday, December 7, 2011
Health & Homeschooling Update
So much has happened since I blogged last I don't know where to begin. I have not been doing well hence my absence.
I have a new Rheumatologist at Sunnybrook hospital and she is AMAZING. She actually listened to me for two hours in her office. Just the two of us with no flunkies (students/interns) to be seen. She did a through examination. She asked me where my meds were fore my Raynauds and Sjorgens. I told her I was not diagnosed with either of those things hence no medications. She then diagnosed Raynauds Phenomenon and Secondary Sjorgens. Two and a half weeks ago I had a lip biopsy to confirm the Sjorgens. This is rather painful as the section they removed for the biopsy is right at the base of the gums on the inside of your mouth and the stitches rub every time you move, chew or breath. Not to mention that my mouth is even drier than usual. He also had me spit into a cup for a period of 20 minutes and was very concerned when he saw that I only had less than 1ml of saliva. I worked darn hard to get that much for him. My mouth is so dry that I cannot eat without a drink. If I try to swallow food without a drink I choke. I am often scared as my mouth seems to have forgotten how to swallow on occasions. Eventually I will swallow but this happens when there is nothing in my mouth other then very small amounts of saliva. Insanely scary when it happens. The biopsy was completed by a Dental Pathologist and confirmed the diagnosis. He also confirmed that I had RA in jaw joints and the lump on my lower left jaw is a nodule. I couldn't believe that considering it is the size of a golf ball and all of my other nodules are rather small in size.
My new Rheumy also ordered: blood work, hand feet and chest x-rays, Doppler testing on all my extremities, an ophthalmologist appointment to review my eyes (check up since I am on Plaquinil and because of the Sjorgens) and a pulmonary function test. She increased my methotrexate and said she would see me again in three weeks. Hopefully then we would have the majority of test results back so that we could make treatment decisions.
In the mean time she also wanted me to quit smoking! I have tried several times a year for the past three years. I have tried hypnosis, medications, laser, acupuncture, cold turkey and anything and everything there is out there. I have not achieved success or anything close to it. Heck I can't get past day three, so for her to say it like it is an easy thing to do quickly is almost laughable. I will try and figure out a way, but honestly the chemo that they put in my body is worse and more harmful than smoking...but I still need to quit. Just not sure how or when. I am so stressed being chronically ill, still getting over pneumonia, in chronic pain each and every day just does not lend itself to success. Any ideas would be greatly appreciated but please no lectures.
Due to having Raynauds I've been told that I can only where socks that are 80% + silk. While light weight they will keep my feet warm while wicking away sweat which is what makes most people's feet cold winter. I have also had to eliminate caffeine for my diet and I have to quit smoking . This means caffeine free soda, no coffee or tea and worst of all no chocolate! As if all of these autoimmune diseases aren't enough they want to take away my chocolate too... Just doesn't seem fair few asked me...lol
The other exciting thing that is happened since I wrote last is that I am now home schooling my son and daughter. This has been a wonderful learning experience for all and the transition for the most part has gone well. I am quite sure come January that we will have a wonderful schedule worked out. While we are on week three, I have had an extraordinary amount of tests completed with having a new Rheumatologist. It really has been a crazy few weeks. Mostly we have focused on: math, language, reading and writing. come the new year we will add social studies and science. I have also found a wonderful artist whose studio is about 15 min. away and the kids will be taking weekly art lessons. Week one will be pencil drawings, week two will be pottery, week three will be watercolors and the final week will be the children's choice.
It is been interesting to learn what teaching styles my children learn from the best. This also varies by subject, you know just to keep it interesting...lol This is been a wonderful opportunity to spend time with my children while working closely with them to achieve their educational goals. To watch my son on a Monday throw temper tantrum ( like I haven't seen since he was two) because four digit addition with carrying was too hard. He declared that he didn't get it last year and he was never going to get it so I should forget about it and leave him alone! I reminded him that learning new things depends on two factor's 1) the teacher and 2)his attitude. I agreed and four digit addition equations were hard but that I also believed that he was very capable of doing things that were hard. If he changed his attitude and believed that he could do it then I promised to never give up and that I would continue to find new ways to teach him until he was successful in learning how to do those types of math questions. By Wednesday his self-confidence was through the roof! He challenged me to come up with longer and longer questions. Eventually we wrote a 33 digit math question on the whiteboard that he completed correctly for his dad when he came home from work. Seeing the change in his self-confidence was what made me positive I had done the right things by pulling them out of school and deciding to homeschool. All three of us are very happy with our decision. Oh ya so is my husband :) It is going to take some getting used to but I am sure once all of my tests are out of the way and the Christmas season is over that we will settle into a nice routine to see out the school year.
I saw my wonderful new Rheumatologist today. she confirmed I have permanent damage in my fingers and toes from the RA. For the first time my CRP levels are high. Up until today the only test that showed/confirmed RA was the anti-CCP. She said that it is very clear that I have severe and aggressive RA. She is concerned about my lungs and therefore did not increase my methotrexate again. She added an additional DMARD called Sulfasalazine which I will begin tomorrow. Apparently when it comes to RA it is the combination of three DMARD's or two DMARD's and a biologic that has the greatest success rate in seeing improvements in RA patients. If my pulmonary function tests and my chest x-ray come back with any concerns than she may discontinue my methotrexate and she may or may not be able to proceed with biologic treatment. This has me worried but I'm trying very hard not to think about what will happen if I can no longer take my methotrexate nor biologic treatment. I keep reminding myself that worry is like a rocking chair it gives us something to do but it doesn't get us anywhere.
On the brighter side thanks to online shopping I have completed all of my Christmas shopping. Just waiting for all of my deliveries. This gives me a couple of weeks to get everything wrapped and ready for Christmas Eve. I am very much looking forward to Christmas, it is my favorite holiday. Thanks to my wonderful husband, children and parents my house and Christmas tree have been decorated.
Are you ready for Christmas? What are your favorite family traditions? I know the next few weeks will be busy but I promise to do my best and check in with a couple of posts between now and Christmas.
Thanks for reading and I look forward to hearing from you!
© 2011 Rhonda
I have a new Rheumatologist at Sunnybrook hospital and she is AMAZING. She actually listened to me for two hours in her office. Just the two of us with no flunkies (students/interns) to be seen. She did a through examination. She asked me where my meds were fore my Raynauds and Sjorgens. I told her I was not diagnosed with either of those things hence no medications. She then diagnosed Raynauds Phenomenon and Secondary Sjorgens. Two and a half weeks ago I had a lip biopsy to confirm the Sjorgens. This is rather painful as the section they removed for the biopsy is right at the base of the gums on the inside of your mouth and the stitches rub every time you move, chew or breath. Not to mention that my mouth is even drier than usual. He also had me spit into a cup for a period of 20 minutes and was very concerned when he saw that I only had less than 1ml of saliva. I worked darn hard to get that much for him. My mouth is so dry that I cannot eat without a drink. If I try to swallow food without a drink I choke. I am often scared as my mouth seems to have forgotten how to swallow on occasions. Eventually I will swallow but this happens when there is nothing in my mouth other then very small amounts of saliva. Insanely scary when it happens. The biopsy was completed by a Dental Pathologist and confirmed the diagnosis. He also confirmed that I had RA in jaw joints and the lump on my lower left jaw is a nodule. I couldn't believe that considering it is the size of a golf ball and all of my other nodules are rather small in size.
My new Rheumy also ordered: blood work, hand feet and chest x-rays, Doppler testing on all my extremities, an ophthalmologist appointment to review my eyes (check up since I am on Plaquinil and because of the Sjorgens) and a pulmonary function test. She increased my methotrexate and said she would see me again in three weeks. Hopefully then we would have the majority of test results back so that we could make treatment decisions.
In the mean time she also wanted me to quit smoking! I have tried several times a year for the past three years. I have tried hypnosis, medications, laser, acupuncture, cold turkey and anything and everything there is out there. I have not achieved success or anything close to it. Heck I can't get past day three, so for her to say it like it is an easy thing to do quickly is almost laughable. I will try and figure out a way, but honestly the chemo that they put in my body is worse and more harmful than smoking...but I still need to quit. Just not sure how or when. I am so stressed being chronically ill, still getting over pneumonia, in chronic pain each and every day just does not lend itself to success. Any ideas would be greatly appreciated but please no lectures.
Due to having Raynauds I've been told that I can only where socks that are 80% + silk. While light weight they will keep my feet warm while wicking away sweat which is what makes most people's feet cold winter. I have also had to eliminate caffeine for my diet and I have to quit smoking . This means caffeine free soda, no coffee or tea and worst of all no chocolate! As if all of these autoimmune diseases aren't enough they want to take away my chocolate too... Just doesn't seem fair few asked me...lol
The other exciting thing that is happened since I wrote last is that I am now home schooling my son and daughter. This has been a wonderful learning experience for all and the transition for the most part has gone well. I am quite sure come January that we will have a wonderful schedule worked out. While we are on week three, I have had an extraordinary amount of tests completed with having a new Rheumatologist. It really has been a crazy few weeks. Mostly we have focused on: math, language, reading and writing. come the new year we will add social studies and science. I have also found a wonderful artist whose studio is about 15 min. away and the kids will be taking weekly art lessons. Week one will be pencil drawings, week two will be pottery, week three will be watercolors and the final week will be the children's choice.
It is been interesting to learn what teaching styles my children learn from the best. This also varies by subject, you know just to keep it interesting...lol This is been a wonderful opportunity to spend time with my children while working closely with them to achieve their educational goals. To watch my son on a Monday throw temper tantrum ( like I haven't seen since he was two) because four digit addition with carrying was too hard. He declared that he didn't get it last year and he was never going to get it so I should forget about it and leave him alone! I reminded him that learning new things depends on two factor's 1) the teacher and 2)his attitude. I agreed and four digit addition equations were hard but that I also believed that he was very capable of doing things that were hard. If he changed his attitude and believed that he could do it then I promised to never give up and that I would continue to find new ways to teach him until he was successful in learning how to do those types of math questions. By Wednesday his self-confidence was through the roof! He challenged me to come up with longer and longer questions. Eventually we wrote a 33 digit math question on the whiteboard that he completed correctly for his dad when he came home from work. Seeing the change in his self-confidence was what made me positive I had done the right things by pulling them out of school and deciding to homeschool. All three of us are very happy with our decision. Oh ya so is my husband :) It is going to take some getting used to but I am sure once all of my tests are out of the way and the Christmas season is over that we will settle into a nice routine to see out the school year.
I saw my wonderful new Rheumatologist today. she confirmed I have permanent damage in my fingers and toes from the RA. For the first time my CRP levels are high. Up until today the only test that showed/confirmed RA was the anti-CCP. She said that it is very clear that I have severe and aggressive RA. She is concerned about my lungs and therefore did not increase my methotrexate again. She added an additional DMARD called Sulfasalazine which I will begin tomorrow. Apparently when it comes to RA it is the combination of three DMARD's or two DMARD's and a biologic that has the greatest success rate in seeing improvements in RA patients. If my pulmonary function tests and my chest x-ray come back with any concerns than she may discontinue my methotrexate and she may or may not be able to proceed with biologic treatment. This has me worried but I'm trying very hard not to think about what will happen if I can no longer take my methotrexate nor biologic treatment. I keep reminding myself that worry is like a rocking chair it gives us something to do but it doesn't get us anywhere.
On the brighter side thanks to online shopping I have completed all of my Christmas shopping. Just waiting for all of my deliveries. This gives me a couple of weeks to get everything wrapped and ready for Christmas Eve. I am very much looking forward to Christmas, it is my favorite holiday. Thanks to my wonderful husband, children and parents my house and Christmas tree have been decorated.
Are you ready for Christmas? What are your favorite family traditions? I know the next few weeks will be busy but I promise to do my best and check in with a couple of posts between now and Christmas.
Thanks for reading and I look forward to hearing from you!
© 2011 Rhonda
Sunday, November 13, 2011
When A Cold Is No Longer Just A Cold
On Wednesday I developed a sore throat. Thursday my throat was feeling a little better but now I had a head cold. Friday it moved from my head to my chest and by Saturday I had pneumonia! I have never seen an illness come on so mild and end up so serious in such a short period of time! My family Dr's words came back to me once he learned what my Rheumy prescribed for my RA medications. He said I needed to be very careful to not expose myself to people who were sick because a cold is no longer just a cold in immune suppressed people. Now I know what he meant.
Immune suppressing medications make dealing with things like the common cold a very slippery slope. I truly needed to go to hospital but I was so scared of the germs that I would be exposed to there that I settled for the walk in clinic. They suggested I go to the hospital but when I expressed my concern of being exposed to worse there he agreed and prescribed powerful antibiotics and I told no methotrexate or plaquinel until my chest is entirely cleared. I was warned that this could take a month or two to clear up.
What will I do without my RA medications for a month or two? How badly is my RA going to flare? What damage will be done while I wait to return to my medications that are supposed to slow down my RA as I have a very aggressive form? I hope and pray that the pneumonia will clear up much more quickly than the Dr. expects!
How do you handle winter cold and flu season? How do we keep ourselves from getting sick in the first place when we are taking medications to destroy our immune system. It appears that I need to spend more time on prevention than ever before. I had my flu shot a week and a half ago...too bad they don't have a cold shot!
Any tips for prevention are greatly appreciated.. What do you do to keep healthy?
© 2011 Rhonda
Immune suppressing medications make dealing with things like the common cold a very slippery slope. I truly needed to go to hospital but I was so scared of the germs that I would be exposed to there that I settled for the walk in clinic. They suggested I go to the hospital but when I expressed my concern of being exposed to worse there he agreed and prescribed powerful antibiotics and I told no methotrexate or plaquinel until my chest is entirely cleared. I was warned that this could take a month or two to clear up.
What will I do without my RA medications for a month or two? How badly is my RA going to flare? What damage will be done while I wait to return to my medications that are supposed to slow down my RA as I have a very aggressive form? I hope and pray that the pneumonia will clear up much more quickly than the Dr. expects!
How do you handle winter cold and flu season? How do we keep ourselves from getting sick in the first place when we are taking medications to destroy our immune system. It appears that I need to spend more time on prevention than ever before. I had my flu shot a week and a half ago...too bad they don't have a cold shot!
Any tips for prevention are greatly appreciated.. What do you do to keep healthy?
© 2011 Rhonda
Excitement is brewing in our house
On November 21st, 2011 will begin my children's change from public education to being home schooled. I am beyond excited in the opportunity that I am about to afford my children. They are going to be educated according to their strengths, passions and in ways that bring out the best of their abilities.
On November 17th the last day of school will be the day that my daughter goes off of her medications for ADHD and Anxiety/Sleep Disorders. I will teach her in a manner that allows for her unique and creative mind. Some people just need to move to think that doesn't make it wrong it just means she is different and different is WONDERFUL. She will stop comparing herself to others and feeling like a failure because she is not a traditional sheep that our school generate. She is: delightful, a day dreamer, creative, She radiates happiness, joy and is so very full of life. We are going to embrace it rather than squash it. We are going to let her be, it is not wrong it is the way she was born. It might not fit with the public education model that insisted that if she were not medicated she could not be taught. We will help her to embrace the individual that she is and to see herself in a positive light for all she will accomplish once she is free to learn her way! She will develop self confidence and self esteem. She will learn how wonderful she is and all that she has to offer the world and I cannot wait to open those doors for her and to provide the opportunities to help her to realize that what I have always told her is true. She can do or be ANYTHING that she wants!
My son on the other hand is naturally brilliant in an entirely different way. This is the child who at the tender age of three said "mommy that was a rhetorical question" and and he was right! He is quiet, introspective and quite bored with traditional methods of learning. Our answer to keeping him interested in school was to place a French immersion program. Initially he excelled and averaged off as he became bored. Homeschooling will allow for us to teach him at a level that coincides with his abilities versus his age. He is quite excited about the opportunities that he is going to have being home schooled. He will be allowed to pursue his passions and interests in balance with maths, sciences and languages. We will explore many different mediums that no different than his sister will take into account his personal learning style. He will develop a healthy self confidence and self esteem. He will feel good about all there is that he has to offer the world. He is AMAZING and my hope is that soon he too will realize it!
We are all very excited about this new path we are taking and looking forward to where it takes us. it is going to be a very different experience for all of us but one we are certainly up for. Perhaps this is the silver lining in chronic illness.
© 2011 Rhonda
On November 17th the last day of school will be the day that my daughter goes off of her medications for ADHD and Anxiety/Sleep Disorders. I will teach her in a manner that allows for her unique and creative mind. Some people just need to move to think that doesn't make it wrong it just means she is different and different is WONDERFUL. She will stop comparing herself to others and feeling like a failure because she is not a traditional sheep that our school generate. She is: delightful, a day dreamer, creative, She radiates happiness, joy and is so very full of life. We are going to embrace it rather than squash it. We are going to let her be, it is not wrong it is the way she was born. It might not fit with the public education model that insisted that if she were not medicated she could not be taught. We will help her to embrace the individual that she is and to see herself in a positive light for all she will accomplish once she is free to learn her way! She will develop self confidence and self esteem. She will learn how wonderful she is and all that she has to offer the world and I cannot wait to open those doors for her and to provide the opportunities to help her to realize that what I have always told her is true. She can do or be ANYTHING that she wants!
My son on the other hand is naturally brilliant in an entirely different way. This is the child who at the tender age of three said "mommy that was a rhetorical question" and and he was right! He is quiet, introspective and quite bored with traditional methods of learning. Our answer to keeping him interested in school was to place a French immersion program. Initially he excelled and averaged off as he became bored. Homeschooling will allow for us to teach him at a level that coincides with his abilities versus his age. He is quite excited about the opportunities that he is going to have being home schooled. He will be allowed to pursue his passions and interests in balance with maths, sciences and languages. We will explore many different mediums that no different than his sister will take into account his personal learning style. He will develop a healthy self confidence and self esteem. He will feel good about all there is that he has to offer the world. He is AMAZING and my hope is that soon he too will realize it!
We are all very excited about this new path we are taking and looking forward to where it takes us. it is going to be a very different experience for all of us but one we are certainly up for. Perhaps this is the silver lining in chronic illness.
© 2011 Rhonda
Friday, October 28, 2011
Making Dreams A Reality
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
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
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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