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

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:

• 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.

What else can you think of to add to this list: Please share in the comments section. If you are an individual with a chronic illness what can your friends and family do to try to understand what you are going through and to support you.

Suggestions for topics you would like to see just add them to your comments. The 30 blogs in 30 days is going to be a challenge :)

© 2011 Rhonda

A wonderful surprise

I had a wonderful phone call from a friend that I had met on-line via sparkpeople.com almost 2 years ago. Sparkpeople is a wonderful community that supports living a healthy lifestyle, losing weight and all of the tools and resources to be successful. I had left her my phone number sometime in the past year or so when she was going through a stressful time. We did not connect at that time. Since I have gone missing these past few months from Sparkpeople she went through her inbox and found that message with my phone number! What a wonderful surprise to hear from her. She made it clear that she was here for me anytime I needed to talk, vent or just chat. I can't tell you how much that simple act of friendship means. I have found myself in some pretty dark places and very isolated (my own doing) over the past few months. Once we hung up she took her kindness to another level, she decided to do some research on my diagnosis' and funnily enough she found my blog ;-) What a wonderful, sweet woman. I cannot thank you enough for caring so much that you wanted to know what I am going through.

That act of friendship reminded me that while I have come to understand each of my diagnosis' that readers of my blog might not know what: Hashimoto's Thyroiditis, Fibromyalgia or Rheumatoid Arthritis are. I am working on  3 separate blogs that explain each of these diseases and the impact that each has on my life. There are so many misconceptions and myths with regards to these diseases. It is important to me to raise awareness of each of these diseases. To provide facts and information that: counter the myths, to create a supportive environment for others to share their experiences, challenges, struggles and most importantly their successes.

© 2011 Rhonda