Today marks 1 year since my
life turned upside down and ultimately resulted with the following diagnosis': RA, Hashimoto's
Thyroiditis, Fibromyalgia, Raynauds and Sjogrens and they aren't sure
they have them all yet. Still undergoing more tests! It amazes me the
way auto-immune diseases cluster in
individuals. If you think about it though there is really one one auto-immune disease and depending on your symptoms and where it is attacking depends on what you are diagnosed with. My body is in a full out war with itself and I am stuck in the middle of a war zone!
I woke up on this day last year and thought I had a bad flu
coming on, well it wasn't the flu and the feeling hasn't left. At least this
year I know for the most part what is wrong and I am undergoing
treatment for all of the above. It is interesting how they declare that
we need early and aggressive treatment and then it can take forever to
get diagnosed. When you are finally diagnosed and they start you on
medications then they sit back and let you know that it will be 3-6months
before we can say for certain if the meds are going to work...so much for
early and aggressive treatments! You would think after a year of
waiting, waiting for dx, waiting for tests, waiting for test results,
waiting for new dr. appointments, waiting for follow up appointments
that I would be the most patient person ever but just the opposite is
true. I just suck at hurry up and wait...not a strength of mine that is for sure.
When I think of anniversaries I think of celebrations. I have never been one to hold on to the dates I have lost important people in my life. I celebrate the life that was lived and tend to stay away from what was lost. I remember love and happy memories. Yet, this date the date the changed my life forever refused to be buried down deep today. It needed recognition and I am not sure why. It has crossed my minds so many times today I decided that maybe if I put it in writing it would go away and stop torturing me. Yes, it feels like torture. Jan 12, 2011 I was on top of the world. I was healthy, I exercised, ate healthy, I was maintaining a 32lb loss, I was in love and loved by my family, I had a great job and I was excited about what the future had in store. Amazing what a difference 24 hours can make. It was after a week of feeling like I was going to die, that I went to my Dr's. I just couldn't manage the pain that I was in. I couldn't get comfortable, the pain unbearable. Little did I know that I have been displaying intermittent symptoms for years and this time it was here to stay.
There has to be something to this. A large number of individuals I have come across in forums etc. mention either this date or the date that they were diagnosed. It seems to have a haunting quality to it :(
For those of you with Chronic Illness do you remember when your symptoms became unbearable or the day you were diagnosed? I guess for me it was so clear cut between healthy one day and falling apart the next that I remember it so clearly.
© 2011 Rhonda
Showing posts with label Rheumatoid Arthritis. Show all posts
Showing posts with label Rheumatoid Arthritis. Show all posts
Friday, January 13, 2012
Sunday, January 8, 2012
Socail Media and Chronic Illness
January 13th, 2011 my life turned upside down. I have spent the better part of the last year waiting. Waiting to get into see specialists, Waiting for test dates, Waiting for test results and waiting for Dr's appointments.
Having been diagnosed with Auto-Immune Diseases in the time of the social media has been a blessing. I am sure not many people stop to think about that but then again I am not most people. At one time individuals like myself were left feeling alone and isolated. Never knowing another with the same diagnosis. Today we can join any forum, follow bloggers, find others diagnosed with Rheumatoid diseases on Twitter by following the hash tag #Rheum, Facebook has groups etc. the support and understanding is everywhere. No longer alone, we can compare medications, share ideas for pain relief, product reviews and find out how other people manage their symptoms, medication side effects and day to day living. Everything you wanted to know is out there, with real people who will eventually become friends that we cannot imagine our days without even though we have never actually met. Finding these pages is like being thrown a life raft out in the middle of the ocean where we feel we are drowning in our diagnosis, symptoms and medication side effects.
I cannot imagine dealing with my diseases without social media and the information and friends it has brought into my life. It is not just for business it brings people together in a way that nothing else has done before it. It has made the world a smaller place. It has also allowed for us to compare our Health Systems that vary by Country and then again by province or state. I am blessed to live in Canada where all of my Dr's appointments and 99% of my tests are available to me free of charge (our taxes go towards this each year). With diseases like mine if I lived in the US I would be broke. I am not a wealthy individual by any means. I could not afford to pay for the health care that I receive. In having the type of health care that we have available to us in Canada there are prices that we pay. We wait 3-6 months to get an MRI and then another 2-4 weeks for the report to get to my Dr's. It is this process that has left me undiagnosed for as long as I was. My dr's believed I had MS so all of the MRI's were necessary to confirm that diagnosis. I needed 1 brain MRI and 3 spinal MRI's that I waited 5 months for and then they were spread out of a two month period. It basically took 8 months to rule out MS before we got back to a new Rheumatologist who did the proper tests and was able to diagnose. If I had not been waiting so long for those MRI's and their results I could have had my diagnosis and treatments much sooner than I got them. I have extended health insurance that pays for my splints, medications and most anything else I might need.
I honestly do feel that I am truly blessed to have won the birth lottery being born in Canada. However when I listen to my neighbours to the south I either get angry that they cannot afford their medical care and do without or I become frustrated. Wishing we had the option to pay for our tests that we want done such as an MRI's. I even contemplated going to the US to have my MRI's done. They could have scheduled me in within a week and I would have had my answers. Instead I waited, waited and waited some more because my tests were scheduled and not too far off now and I did not feel there was an urgency. If I had of felt that urgency then I would have gone. The only urgency I felt was a very strong desire to KNOW for sure what was wrong with me. I was sick, tired and so very concerned about what the future would hold. It would be nice to have the option to pay for MRI's and have them done here at home without the wait list. It would make our wait lists shorter if we had that option as I am sure there are a fairly large number of individuals who could afford to have them done and would make the choice which would benefit more than just that individual as it would open up a spot on the long wait list as well. I think there has to be a happy medium somewhere between our two health care systems that would make things better for everyone!
Without social media we would have no idea the struggles of our fellow RA'ers. Having to make decisions between tests and medication vs. a roof over their heads and food in their stomachs. I had no idea it was that bad. I have come to learn so much. Thanks to Social Media for putting all of us individuals together, making the world a little smaller and allowing us to get to know others who are going through the same or similar things. It is a wonderful feeling to know that I am not alone with this struggle. That if I want to go to a place where I am understood, need advice or just to not feel so alone my friends are the click of a mouse away.
Who knew that Social Media would make such a difference in my diagnosis. I didn't but then again I should have known. Every time the Dr's threw a diagnosis on the table to explore I came to the internet for information. Once I had a diagnosis I found the most amazing people so quickly. I am truly blessed and have to thank social media for allowing us a place to get together and get to each other. Not something I would have ever thought of had I not become chronically ill.
How has social media made a difference in your life? Has it helped or hindered you? What social media types do you use? Is there one out there that I have not mentioned? Please share your experiences!
Looking forward to hearing from you.
© 2011 Rhonda
Having been diagnosed with Auto-Immune Diseases in the time of the social media has been a blessing. I am sure not many people stop to think about that but then again I am not most people. At one time individuals like myself were left feeling alone and isolated. Never knowing another with the same diagnosis. Today we can join any forum, follow bloggers, find others diagnosed with Rheumatoid diseases on Twitter by following the hash tag #Rheum, Facebook has groups etc. the support and understanding is everywhere. No longer alone, we can compare medications, share ideas for pain relief, product reviews and find out how other people manage their symptoms, medication side effects and day to day living. Everything you wanted to know is out there, with real people who will eventually become friends that we cannot imagine our days without even though we have never actually met. Finding these pages is like being thrown a life raft out in the middle of the ocean where we feel we are drowning in our diagnosis, symptoms and medication side effects.
I cannot imagine dealing with my diseases without social media and the information and friends it has brought into my life. It is not just for business it brings people together in a way that nothing else has done before it. It has made the world a smaller place. It has also allowed for us to compare our Health Systems that vary by Country and then again by province or state. I am blessed to live in Canada where all of my Dr's appointments and 99% of my tests are available to me free of charge (our taxes go towards this each year). With diseases like mine if I lived in the US I would be broke. I am not a wealthy individual by any means. I could not afford to pay for the health care that I receive. In having the type of health care that we have available to us in Canada there are prices that we pay. We wait 3-6 months to get an MRI and then another 2-4 weeks for the report to get to my Dr's. It is this process that has left me undiagnosed for as long as I was. My dr's believed I had MS so all of the MRI's were necessary to confirm that diagnosis. I needed 1 brain MRI and 3 spinal MRI's that I waited 5 months for and then they were spread out of a two month period. It basically took 8 months to rule out MS before we got back to a new Rheumatologist who did the proper tests and was able to diagnose. If I had not been waiting so long for those MRI's and their results I could have had my diagnosis and treatments much sooner than I got them. I have extended health insurance that pays for my splints, medications and most anything else I might need.
I honestly do feel that I am truly blessed to have won the birth lottery being born in Canada. However when I listen to my neighbours to the south I either get angry that they cannot afford their medical care and do without or I become frustrated. Wishing we had the option to pay for our tests that we want done such as an MRI's. I even contemplated going to the US to have my MRI's done. They could have scheduled me in within a week and I would have had my answers. Instead I waited, waited and waited some more because my tests were scheduled and not too far off now and I did not feel there was an urgency. If I had of felt that urgency then I would have gone. The only urgency I felt was a very strong desire to KNOW for sure what was wrong with me. I was sick, tired and so very concerned about what the future would hold. It would be nice to have the option to pay for MRI's and have them done here at home without the wait list. It would make our wait lists shorter if we had that option as I am sure there are a fairly large number of individuals who could afford to have them done and would make the choice which would benefit more than just that individual as it would open up a spot on the long wait list as well. I think there has to be a happy medium somewhere between our two health care systems that would make things better for everyone!
Without social media we would have no idea the struggles of our fellow RA'ers. Having to make decisions between tests and medication vs. a roof over their heads and food in their stomachs. I had no idea it was that bad. I have come to learn so much. Thanks to Social Media for putting all of us individuals together, making the world a little smaller and allowing us to get to know others who are going through the same or similar things. It is a wonderful feeling to know that I am not alone with this struggle. That if I want to go to a place where I am understood, need advice or just to not feel so alone my friends are the click of a mouse away.
Who knew that Social Media would make such a difference in my diagnosis. I didn't but then again I should have known. Every time the Dr's threw a diagnosis on the table to explore I came to the internet for information. Once I had a diagnosis I found the most amazing people so quickly. I am truly blessed and have to thank social media for allowing us a place to get together and get to each other. Not something I would have ever thought of had I not become chronically ill.
How has social media made a difference in your life? Has it helped or hindered you? What social media types do you use? Is there one out there that I have not mentioned? Please share your experiences!
Looking forward to hearing from you.
© 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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