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
Friday, January 13, 2012
Thursday, January 12, 2012
Book Review
Well my RA and Depression have combined against me to make my goal of writing 30 Blogs in 30 days a little more challenging than it already was. I was hoping for one blog each day. Some days I am just incapable even with the voice activated software. I cannot thin clearly enough to express myself let alone in writing. It wouldn't be fare to subject anyone to those ramblings..lol
It also means that the work I wanted to do on my novel so far has not happened. However I am only 4 blogs behind so I am hoping for time over the weekend to catch up and be back on track with my blogging.
I have spent a lot of time in bed reading this past week. That is about all I am capable of once I have finished work and homeschooling for the day. I have very much enjoyed my kobo vox and one of the things I may not have mentioned is the fact that I no longer have to wait to read until I can make a trip to the book store. It is right there on my tablet.
As soon as I am finished a book I can purchase and read another. I really am loving it. Getting lost in reading is one of the only things that can help to distract me from my pain. Not the worst of it because nothing can be done when it is really bad.
Since Christmas I have read:
1. Kill Alex Cross by James Patterson - Another Book in the Alex Cross series. An enjoyable read if you like mystery's.
2. The Girl With The Dragon Tattoo Trilogy by Stieg Larsson - A difficult read until you get used to the Swedish names and can keep your characters straight. After that all three of the books are a must read. I have even seen the Swedish Films with subtitles. The first in the trilogy has been made my Hollywood and was released over the Holidays. I have yet to see these movies but given how amazing the books were you can guarantee the movies will leave something to be desired but still worth a look I am sure.
3. The Hunger Games Trilogy by Suzanne Collins - Another Trilogy that is a worthwhile read that Hollywood is making into films the first to be released in 2012. These books are out of my normal reading genre's and are fantasy but not really what I would consider fantasy. Now by Fantasy it means that they are written in the future. In the ruins of a place once known as North America lies the nation of Panem, a shining Capitol surrounded by twelve outlying districts. Don't be fooled by Schoolastic being the publisher. They were written for young adults (I guess my 40 is still young..lol) and are loved by people of all ages. The first two books were a great read. I can't say that I was thrilled with the last book and the ending of the trilogy but overall a very worth while read.
I am now reading The Confession by John Grisham - one chapter in and as usual I love his books!
If you do not own an e-reader but still want to get your books at a discount, save trees and not have the clutter in your house then download the Kobo App for your computer, smart phone or tablet.
Happy Reading
© 2011 Rhonda
It also means that the work I wanted to do on my novel so far has not happened. However I am only 4 blogs behind so I am hoping for time over the weekend to catch up and be back on track with my blogging.
I have spent a lot of time in bed reading this past week. That is about all I am capable of once I have finished work and homeschooling for the day. I have very much enjoyed my kobo vox and one of the things I may not have mentioned is the fact that I no longer have to wait to read until I can make a trip to the book store. It is right there on my tablet.
As soon as I am finished a book I can purchase and read another. I really am loving it. Getting lost in reading is one of the only things that can help to distract me from my pain. Not the worst of it because nothing can be done when it is really bad.
Since Christmas I have read:
1. Kill Alex Cross by James Patterson - Another Book in the Alex Cross series. An enjoyable read if you like mystery's.
2. The Girl With The Dragon Tattoo Trilogy by Stieg Larsson - A difficult read until you get used to the Swedish names and can keep your characters straight. After that all three of the books are a must read. I have even seen the Swedish Films with subtitles. The first in the trilogy has been made my Hollywood and was released over the Holidays. I have yet to see these movies but given how amazing the books were you can guarantee the movies will leave something to be desired but still worth a look I am sure.
3. The Hunger Games Trilogy by Suzanne Collins - Another Trilogy that is a worthwhile read that Hollywood is making into films the first to be released in 2012. These books are out of my normal reading genre's and are fantasy but not really what I would consider fantasy. Now by Fantasy it means that they are written in the future. In the ruins of a place once known as North America lies the nation of Panem, a shining Capitol surrounded by twelve outlying districts. Don't be fooled by Schoolastic being the publisher. They were written for young adults (I guess my 40 is still young..lol) and are loved by people of all ages. The first two books were a great read. I can't say that I was thrilled with the last book and the ending of the trilogy but overall a very worth while read.
I am now reading The Confession by John Grisham - one chapter in and as usual I love his books!
If you do not own an e-reader but still want to get your books at a discount, save trees and not have the clutter in your house then download the Kobo App for your computer, smart phone or tablet.
Happy Reading
© 2011 Rhonda
Depression: A Common Companion To Chronic Illness
The holidays have passed and the winter is cold and dark. It is no surprise that the depression is back to dominating my every waking moment with a vengeance. Winters are usually the worst for most people who suffer with depression or S.A.D (Seasonal Affective Disorder). We don't do well with the lack of sunlight that occurs in winter. I have for most of my adult life gone through periods of depression. Some worse than others. Usually following a life event such as the loss of another, which is normal. On occasion I would find myself depressed and couldn't tell you why, it just came over me. It is something that comes on slowly and sadly I don't realize just how bad it is until the impact on my life until I am drowning in it. I have required the use of anti-depressants and usually within a few weeks I am doing much better. I do not continue to take the anti-depressants any longer than necessary.
There is something very different about my depression this time around. First of all I accepted my depression as a natural part of being diagnosed with chronic illness that have no cure. When I declared the depression a normal response to my situation, I thought I could just get through it. I just need time to come to terms with my diagnosis. It would appear that it is past time that I asked my Dr. for help. The difference this time around is chronic illness that results in chronic pain each and every day for the past year. That is 365 days of pain that brings me to my knees. Pain that makes functioning difficult. I have mentioned depression on this blog before probably in August/September after my initial diagnosis, but it has yet to end. This week I have realized how deep this depression is. I cannot deal with this on my own. I am going to need to make an appointment with my Dr. to discuss and get a prescription for anti-depressants.
When you live each and every day with: chronic fatigue that is almost as debilitating as the disease itself, pain that brings you to your knees and illnesses that cause your body to attack it self it is no wonder that depression is never far behind. It makes the pain worse, it takes away your inner fight, it makes the day to day feel impossible. Depression is not something that you can will yourself out of, others cannot cajole you into feeling better and this time rather than getting better a little each day it appears to have gotten deeper each day. Sometimes you don't notice how bad it is until you cannot ignore it any longer. I put on a happy face and got through the holidays for the sake of my children. Today I cannot find that happy face not even for my children. I have cried more than my share this past week. Crying because the pain is so bad, crying because I am sick and tired of being sick and tired, crying because I have no choice, crying because I am scared of my future with this disease.
One of the medications I am on is an anti-depressant. However, it was prescribed for pain relief from the Fibro which it doesn't seem to help at all and it was prescribed to help me sleep which it does help most nights unless the pain is so bad I cannot get to sleep. Once I am asleep I sleep for a few hours and then the pain wakes me. Getting back to sleep is difficult. So I would suggest that this is not the right medication to help my depression since I have been on it since August and it hasn't stopped the depression from developing nor has it decreased it at all. I shall make an appointment to see my family Dr. next week.
Have you ever dealt with depression? How did you manage to over come it? Have you ever developed depression in relation to chronic illness? I would love to hear from you.
© 2011 Rhonda
There is something very different about my depression this time around. First of all I accepted my depression as a natural part of being diagnosed with chronic illness that have no cure. When I declared the depression a normal response to my situation, I thought I could just get through it. I just need time to come to terms with my diagnosis. It would appear that it is past time that I asked my Dr. for help. The difference this time around is chronic illness that results in chronic pain each and every day for the past year. That is 365 days of pain that brings me to my knees. Pain that makes functioning difficult. I have mentioned depression on this blog before probably in August/September after my initial diagnosis, but it has yet to end. This week I have realized how deep this depression is. I cannot deal with this on my own. I am going to need to make an appointment with my Dr. to discuss and get a prescription for anti-depressants.
When you live each and every day with: chronic fatigue that is almost as debilitating as the disease itself, pain that brings you to your knees and illnesses that cause your body to attack it self it is no wonder that depression is never far behind. It makes the pain worse, it takes away your inner fight, it makes the day to day feel impossible. Depression is not something that you can will yourself out of, others cannot cajole you into feeling better and this time rather than getting better a little each day it appears to have gotten deeper each day. Sometimes you don't notice how bad it is until you cannot ignore it any longer. I put on a happy face and got through the holidays for the sake of my children. Today I cannot find that happy face not even for my children. I have cried more than my share this past week. Crying because the pain is so bad, crying because I am sick and tired of being sick and tired, crying because I have no choice, crying because I am scared of my future with this disease.
One of the medications I am on is an anti-depressant. However, it was prescribed for pain relief from the Fibro which it doesn't seem to help at all and it was prescribed to help me sleep which it does help most nights unless the pain is so bad I cannot get to sleep. Once I am asleep I sleep for a few hours and then the pain wakes me. Getting back to sleep is difficult. So I would suggest that this is not the right medication to help my depression since I have been on it since August and it hasn't stopped the depression from developing nor has it decreased it at all. I shall make an appointment to see my family Dr. next week.
Have you ever dealt with depression? How did you manage to over come it? Have you ever developed depression in relation to chronic illness? I would love to hear from you.
© 2011 Rhonda
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
Thursday, January 5, 2012
Kobo Vox - More than an e-reader
This Christmas my husband took note of the fact that I had stopped reading. I LOVE reading and can't put a good book down until it is finished. So why would someone just quit reading you might ask? Rheumatoid Auto Immune Disease (RAD and formally known as RA) has made such a mess of my hands that I had no choice. I did not have the strength to hold a book in order to read. It hurt my fingers to turn pages and all in all it became a very painful experience. It drove me to put my love of reading aside. Rather tragic I have loved to read since I was a child and it was always something that brought me great joy until this past year :(
My husband decided that perhaps an electronic e-reader would be the solution to allow me to escape into my books once again. HE WAS RIGHT...I LOVE MY KOBO VOX. He tried very hard to get me a kindle fire but they are not available here in Canada..Booo! So the next closest things available in Canada was the kobo vox. Now what you may not realize is that this full colour e-reader is also a great introductory tablet. It is inexpensive in comparison to IPad and great for what I need it for. So far I have spent 54 hours and 49 minutes reading..it gives me all of my stats and allows a social reading experience by allowing me to post passages to Facebook right from the Kobo Vox.
Since Christmas I have read Kill Alex Cross, The Girl With the Dragon Tattoo Trilogy and I have just started the Hunger Games Trilogy. Getting lost in reading is a great tool for distracting me from my pain. It takes me to another world where my diseases don't exist. It is also a great pass time for someone who is housebound as much as I am and also helps pass the time waiting for Dr's and tests.
I can download apps (android apps which are free unlike the apple apps), post to facebook. surf the internet, order my books and have them appear on my Kobo Vox in under a minute (no more waiting until I am well enough to go to the book store...I just LOVE this e-reader/tablet. Best of all it is small enough to fit in my purse and I can take my whole library with me anywhere I want to go!!
I don't work for Chapters/Indigo or know anybody who does. This is not a paid advertisement but just a gal who LOVES her Kobo Vox!
I highly recommend to anyone contemplating an introductory tablet / e-reader. In fact my kids loved mine so much that they had used their savings and Christmas money to purchase their own. They love the silly apps and reading their books on it just as much as I do. A great gift to install in our Children is the love of books.
What are your favourite books? Do you own an E-Reader, if so what do you think of it?
I look forward to hearing from you!
© 2011 Rhonda
My husband decided that perhaps an electronic e-reader would be the solution to allow me to escape into my books once again. HE WAS RIGHT...I LOVE MY KOBO VOX. He tried very hard to get me a kindle fire but they are not available here in Canada..Booo! So the next closest things available in Canada was the kobo vox. Now what you may not realize is that this full colour e-reader is also a great introductory tablet. It is inexpensive in comparison to IPad and great for what I need it for. So far I have spent 54 hours and 49 minutes reading..it gives me all of my stats and allows a social reading experience by allowing me to post passages to Facebook right from the Kobo Vox.
Since Christmas I have read Kill Alex Cross, The Girl With the Dragon Tattoo Trilogy and I have just started the Hunger Games Trilogy. Getting lost in reading is a great tool for distracting me from my pain. It takes me to another world where my diseases don't exist. It is also a great pass time for someone who is housebound as much as I am and also helps pass the time waiting for Dr's and tests.
I can download apps (android apps which are free unlike the apple apps), post to facebook. surf the internet, order my books and have them appear on my Kobo Vox in under a minute (no more waiting until I am well enough to go to the book store...I just LOVE this e-reader/tablet. Best of all it is small enough to fit in my purse and I can take my whole library with me anywhere I want to go!!
I don't work for Chapters/Indigo or know anybody who does. This is not a paid advertisement but just a gal who LOVES her Kobo Vox!
I highly recommend to anyone contemplating an introductory tablet / e-reader. In fact my kids loved mine so much that they had used their savings and Christmas money to purchase their own. They love the silly apps and reading their books on it just as much as I do. A great gift to install in our Children is the love of books.
What are your favourite books? Do you own an E-Reader, if so what do you think of it?
I look forward to hearing from you!
© 2011 Rhonda
Wednesday, January 4, 2012
Support and Understanding for Individuals with Auto-Immune Diseases
Support and Understanding are two very important pieces in the life of an individual with a chronic illness. Support and understanding are important to every one to some degree or another but they take on a different role in those will chronic illness. A number of people are blessed to get their support and understanding from loved ones. This may be friends or family and when one is truly blessed they get it from both. There is however a difference between the support and understanding that the average person needs compared to an individual diagnosed with a chronic illness.
There are diseases that the average person is aware because of fund raising campaigns or personal experience. This would include disease such as Heart and Stroke, Cancers etc. When an individual is diagnosed with one of these diseases there is immediate support and understanding and it comes from many sources far and wide. They are embraced and people want to do whatever it is they can to help. They have both support and understanding almost instantly upon others being made aware of the diagnosis. It is also important to note in individuals who have these types of diseases there is an attitude of fighting against something and when they win that fight they become survivors. In the cause of Auto-Immune diseases there is no winning the fight you will have the disease for life. There is nothing to fight, nothing to overcome and nothing to survive. You have to live with the pain and illness for the remainder of your life. That is a very daunting thought. It is overwhelming to know you will have this forever and that there is no cure. It is a long and lonely road to be on.
Then there are auto-immune diseases that unless you have been been directly exposed to by a family member or very close friend you are not likely to know of them. Even then you may not have a good handle on what it means with regards to day to day functioning. There are no cures for these diseases and most of us try not to let those closest to us know just how much pain and suffering there is. The reason is simple it is because there is nothing that can be done to help beyond what our dr's are doing for us. There are hundreds of auto-immune diseases, where the body basically turns on itself and starts attacking healthy cells rather than cells that are full of disease.
Pick an auto-immune disease and then hit the facebook groups and forums on the internet. In every single one usually many times daily you will see at least one if not many more complaints that nobody understands. That they do not receive the support they so desperately need. Nobody understands what it is like to live with chronic pain day in and day out as a result of these diseases. While I agree that unless you have experienced it first hand you won't truly understand what the cumulative effect on a person is. However, you can research to learn as much as you can. There is no reason that you should not understand to the degree possible without your own diagnosis, what your loved one is going through.
I thought it might be helpful to compile a list of ways you can understand and support your loved ones who suffer from auto-immune diseases. Now this list is being complied from my understanding and the fact that I live with 4 auto-immune diseases (Hashimoto's, Auto-Immune Rheumatoid Disease (formally called RA), Raynauds, Sjorgens and Fibromyalgia which likes to hang out with Auto-Immune Diseases for some unknown reason. I am sure that I will miss some things so please in your comments add to my list. Let's help people who do not have auto-immune diseases to be able to understand and support their loved ones.
Understanding and Support for Individuals With Chronic Illness (Auto-Immune Diseases)
Here are things that you can do:
© 2011 Rhonda
There are diseases that the average person is aware because of fund raising campaigns or personal experience. This would include disease such as Heart and Stroke, Cancers etc. When an individual is diagnosed with one of these diseases there is immediate support and understanding and it comes from many sources far and wide. They are embraced and people want to do whatever it is they can to help. They have both support and understanding almost instantly upon others being made aware of the diagnosis. It is also important to note in individuals who have these types of diseases there is an attitude of fighting against something and when they win that fight they become survivors. In the cause of Auto-Immune diseases there is no winning the fight you will have the disease for life. There is nothing to fight, nothing to overcome and nothing to survive. You have to live with the pain and illness for the remainder of your life. That is a very daunting thought. It is overwhelming to know you will have this forever and that there is no cure. It is a long and lonely road to be on.
Then there are auto-immune diseases that unless you have been been directly exposed to by a family member or very close friend you are not likely to know of them. Even then you may not have a good handle on what it means with regards to day to day functioning. There are no cures for these diseases and most of us try not to let those closest to us know just how much pain and suffering there is. The reason is simple it is because there is nothing that can be done to help beyond what our dr's are doing for us. There are hundreds of auto-immune diseases, where the body basically turns on itself and starts attacking healthy cells rather than cells that are full of disease.
Pick an auto-immune disease and then hit the facebook groups and forums on the internet. In every single one usually many times daily you will see at least one if not many more complaints that nobody understands. That they do not receive the support they so desperately need. Nobody understands what it is like to live with chronic pain day in and day out as a result of these diseases. While I agree that unless you have experienced it first hand you won't truly understand what the cumulative effect on a person is. However, you can research to learn as much as you can. There is no reason that you should not understand to the degree possible without your own diagnosis, what your loved one is going through.
I thought it might be helpful to compile a list of ways you can understand and support your loved ones who suffer from auto-immune diseases. Now this list is being complied from my understanding and the fact that I live with 4 auto-immune diseases (Hashimoto's, Auto-Immune Rheumatoid Disease (formally called RA), Raynauds, Sjorgens and Fibromyalgia which likes to hang out with Auto-Immune Diseases for some unknown reason. I am sure that I will miss some things so please in your comments add to my list. Let's help people who do not have auto-immune diseases to be able to understand and support their loved ones.
Understanding and Support for Individuals With Chronic Illness (Auto-Immune Diseases)
Here are things that you can do:
- To be there for them, to allow them to vent their frustrations, to talk about what they are experiencing is really all they want. They don't want you to fix things and they know you cannot make things better but you can listen. It is a very powerful thing to actually listen to another. They may want to express their frustrations with their health, the pain and how it impacts their day to day lives or they may want to talk about things to distract them from their daily struggles.
- They want your understanding when they have to cancel a date because they are having a difficult/bad day. They want to see you and do what you had planned on just as much as you do. They feel terrible for cancelling but their diseases often leave them no choice. Do not take it personally if they cancel. It has nothing to do with you and everything to do with their disease(s). Reschedule or ask if you can drop by and watch a movie with them or bring dinner if you had plans to go out to eat. Sometimes that might be possible unless their pain is that bad that they have taken meds and gone to bed. I know I won't allow friends to drop around when I am in severe pain. I don't like anybody to see me like that if I have a choice. However, I love those who offer to come see me if I can't make it out, even if I have to pass on that offer as well.
- Research their primary and secondary diagnosis'. Very often with auto-immune diseases there are multiple diagnosis. It is rare for an individual to have just one. Read up so that you have an understanding of what they go through and what they are facing in the future.
- Very often depression is something that most people with chronic illnesses suffer from . For some it comes and goes in long periods, for others it is a constant companion. When depressed and/or in pain individuals often withdraw into themselves. Help them to stay involved and don't allow them to wallow and completely withdraw into themselves. Identify the fact that you are concerned they may be depressed. Ask if there is anything you can do.
- Music can decrease pain and depression - Make them a CD of songs that are special to the both of you. Bring it to them or stick it in the mail.
- Movies - go to a show together, rent or purchase one to watch together. Distraction is important. It would be nice if the individual did not have to think about their disease or pain for a couple of hours.
- Drop off a casserole, lasagna, soup or stew. Something that they can heat and serve on days when they are struggling and would probably not eat if it was something that required effort that they just don't have to give.
- Gift certificates for maid service on special occasions would be so very appreciated. Many of us cannot deep clean our homes the way we used to.
- Write them a letter or communicate via e-mail or phone - The point is to stay in touch. Friends and family often disappear once we have cancelled a number of dates/get together's. Understand why and stick around. You will both be glad you did.
- Ask if there is anything you can do to help. My mom comes by and cleans my floors almost every time she visits as she knows this is one task I cannot do on my own. It is so appreciated beyond what words can say.
- If you are headed out to the store, see if there is anything you can pick up for them. Trips to the local pharmacy are also greatly appreciated.
© 2011 Rhonda
Tuesday, January 3, 2012
Baby It's Cold Outside...
Today is a bright sunny, crisp cold, cold day here in Southern Ontario. Our temperature is -16C and with the windchill it feels like -27C. For my Amercian friends that is 2F and feeling like -17F. No matter how you cut it, it is darn cold here this morning and getting colder as the day goes on...brrrrrrrrrrrr
That makes today absolutely perfect for staying indoors! I cannot be out in this kind of cold with my Rheumatoid Arthritis and Raynauds Phenomenon. With the RP it could actually be dangerous for me to be outside in this cold weather. I dress in layers, silk socks keep my feet warm and they are light weight, mittens keep your hands warmer than gloves, a warm ski jacket (no skiing involved but they sure are warm), long johns keep my legs warm under my jeans or track pants (depends on how my hands are and if I can do the button and zipper up on jeans...lol) and a t-shirt with a sweatshirt over top. Thank goodness today I don't have any appointments or tests today so none of those things are necessary!
I work from home so I don't even have to leave the house for that :). It is a good day to stay in my warm fleece jammies and get started on slowly taking all of my Christmas decorations down. I didn't get much sleep last night due to pain and the swelling this morning has left me with numb hands. So when I say slowly taking down decorations I mean slowly and with lots of help from the kids!
How do you manage the cold? If you have health issues does the cold make them worse? How cold is it today where you live? Keep warm my friends no matter where you live. ((HUGS))
© 2011 Rhonda
That makes today absolutely perfect for staying indoors! I cannot be out in this kind of cold with my Rheumatoid Arthritis and Raynauds Phenomenon. With the RP it could actually be dangerous for me to be outside in this cold weather. I dress in layers, silk socks keep my feet warm and they are light weight, mittens keep your hands warmer than gloves, a warm ski jacket (no skiing involved but they sure are warm), long johns keep my legs warm under my jeans or track pants (depends on how my hands are and if I can do the button and zipper up on jeans...lol) and a t-shirt with a sweatshirt over top. Thank goodness today I don't have any appointments or tests today so none of those things are necessary!
I work from home so I don't even have to leave the house for that :). It is a good day to stay in my warm fleece jammies and get started on slowly taking all of my Christmas decorations down. I didn't get much sleep last night due to pain and the swelling this morning has left me with numb hands. So when I say slowly taking down decorations I mean slowly and with lots of help from the kids!
How do you manage the cold? If you have health issues does the cold make them worse? How cold is it today where you live? Keep warm my friends no matter where you live. ((HUGS))
© 2011 Rhonda
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