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
Showing posts with label Auto Immune Diseases. Show all posts
Showing posts with label Auto Immune Diseases. Show all posts
Sunday, January 8, 2012
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
Wednesday, September 21, 2011
They Were Wrong
Not long after my diagnosis my brother came to see me. He spent a couple of hours reassuring me that while these diseases may ravage and take my body that I am so much more than the body I reside in. Nothing can take away who I am. I believed him and took great comfort in those words. I was indeed more than my shell, I was more important than my ability to do housework, do laundry etc. ...all of the things that people love about me are still here. This same message was given by just about every member of my family and the majority of my close friends. Today I realized...THEY WERE WRONG!
These diseases have changed how I react and I quickly become overwhelmed, I have to say I do not like the changes. I am becoming somebody that I don't like. Worst of all I don't know if there is anything I can do to change it and that scares me more than all of these horrible diseases combined.
The most important roles in my life are those of being a mother, wife, daughter and sister. I cherish those roles and they mean more to me than words can express. I have the most amazing children, husband and family. All of these relationships have changed and not for the better and the cause lies with me.
I am not sure if it is the chronic pain, my medications, the depression or the actual diseases themselves but the changes are clear. The three biggest changes are that: I have no patience, I have no tolerance for loud noises and my needs lead me to isolating myself from others. Lacking patience when you are the parent of young children is not good. Lacking patience when you have a child with a severe anxiety disorder and ADHD is unacceptable. It can result in my yelling which before all of this rarely happened which leads to upset children. Yelling at children is not something that I believe in and is a very ineffective parenting tool. What disturbs me is that it just happens. It is an automatic reaction/response to what is before me. I have to find a way to control this automatic response because it is something that I am very uncomfortable with.
As for loud noises it can be wonderful laughter, kids too excited running and playing, it can be the kids arguing, a crying baby, too many sources of noise (tv or music in the background, people talking, kids playing) and it creates an immediate response of upset and confusion. I just can't manage it at all. I have often left a room in tears to go to a quieter place (usually my room or outside on the deck if the house is just too noisy). I feel like a kill joy, they are just having fun and I want them to be happy and to have fun but I cannot tolerate any noise..ugh
As for the isolation it can be for a variety of reasons: be as a result of the noise, it can be the pain is at an unmanageable level and I need to go lay down in the quiet, it can be my hips that cause such pain from sitting or walking through out the day that I need to lay down (this usually happens by 8pm most nights). As for reaching out to others (family and friends) I rarely pick up the phone anymore to call anyone. This upsets my mom more than anyone and I hate that. I have nothing to add to conversation. I go days and sometimes weeks without leaving the house other than for dr's appointments. I am sick of talking about my illness and treatments and well if I am honest, I just don't make for good company right now. I want/need to be alone.
My daughter (the youngest) has her own challenges with a severe anxiety disorder and ADHD and has required an extremely high level of support for the last three years. She can be so high needs that some times it has felt as if she just sucked the life out of me and that is when I was healthy. My patience was very much needed and appreciated to provide her with the level of support she requires. She is not used to me being overwhelmed, putting myself on time outs or yelling and with her issues takes all of them to heart.
Returning to school is one of the most difficult times of year for her. This year as been worse because it has taken two weeks to get her school to put the correct supports in place for her. She is also extremely anxious about leaving mommy at home by herself in case I need help and there is nobody here. I have addressed things with the school once again (3 meetings, one before school started and one each week of school) and they have finally got things sorted out there. We constantly reassure her that I have all of the support that I need with family who all live within 5 minutes of here should I need them. Add to this the fact that she seems to be going through a stage that has her very uncooperative, argumentative and did I mention uncooperative? and add with that no patience, no tolerance for noise and isolation and you have a very unhealthy mix.
In all of my reading about my diseases (Rheumatoid Arthritis, Fibromyalgia, Hashimoto's Thyroiditis) I have never read about the impact on chronic illness on families. How do we help families especially children to understand about these illnesses? What tools / strategies are out there for individuals like myself to deal with these issues that come forward when dealing with chronic illness?
I hade a conversation with one of the Arthritis Society Social Workers earlier today around all of these issues and she has reassured me I am not changing. If we took away all of my health issues I would go back to the me I know and love. It is a stressful time mourning and coming to terms with all of the changes, the deformities, the things I can no longer do and the number of things I have to find creative ways of doing. She believes I am being much too hard on my self as the incidents are few and far between. My relationships with my kids remain healthy and strong. I have already apologized to them and now that I see the pattern in my behaviour I have the power to count to ten before I react..allowing time to think rather than react strictly on emotion. I know she is right and it isn't as bad as it feels. It is just so unlike me. I think the real issue is that it is such a big adjustment and I am scared that I am going to lose myself in the process watching my body deteriorate.
Now that these areas have been identified I need to do my best to address them. I really do hope that I am wrong and that I can find a way to deal with these in a more positive way. Right now it feels like I am fighting these diseases and losing...and my family is losing. That doesn't sit well with me.
I would really appreciate hearing any thoughts, insight, feedback, strategies, suggestions or sources for information that you are aware of.
© 2011 Rhonda
These diseases have changed how I react and I quickly become overwhelmed, I have to say I do not like the changes. I am becoming somebody that I don't like. Worst of all I don't know if there is anything I can do to change it and that scares me more than all of these horrible diseases combined.
The most important roles in my life are those of being a mother, wife, daughter and sister. I cherish those roles and they mean more to me than words can express. I have the most amazing children, husband and family. All of these relationships have changed and not for the better and the cause lies with me.
I am not sure if it is the chronic pain, my medications, the depression or the actual diseases themselves but the changes are clear. The three biggest changes are that: I have no patience, I have no tolerance for loud noises and my needs lead me to isolating myself from others. Lacking patience when you are the parent of young children is not good. Lacking patience when you have a child with a severe anxiety disorder and ADHD is unacceptable. It can result in my yelling which before all of this rarely happened which leads to upset children. Yelling at children is not something that I believe in and is a very ineffective parenting tool. What disturbs me is that it just happens. It is an automatic reaction/response to what is before me. I have to find a way to control this automatic response because it is something that I am very uncomfortable with.
As for loud noises it can be wonderful laughter, kids too excited running and playing, it can be the kids arguing, a crying baby, too many sources of noise (tv or music in the background, people talking, kids playing) and it creates an immediate response of upset and confusion. I just can't manage it at all. I have often left a room in tears to go to a quieter place (usually my room or outside on the deck if the house is just too noisy). I feel like a kill joy, they are just having fun and I want them to be happy and to have fun but I cannot tolerate any noise..ugh
As for the isolation it can be for a variety of reasons: be as a result of the noise, it can be the pain is at an unmanageable level and I need to go lay down in the quiet, it can be my hips that cause such pain from sitting or walking through out the day that I need to lay down (this usually happens by 8pm most nights). As for reaching out to others (family and friends) I rarely pick up the phone anymore to call anyone. This upsets my mom more than anyone and I hate that. I have nothing to add to conversation. I go days and sometimes weeks without leaving the house other than for dr's appointments. I am sick of talking about my illness and treatments and well if I am honest, I just don't make for good company right now. I want/need to be alone.
My daughter (the youngest) has her own challenges with a severe anxiety disorder and ADHD and has required an extremely high level of support for the last three years. She can be so high needs that some times it has felt as if she just sucked the life out of me and that is when I was healthy. My patience was very much needed and appreciated to provide her with the level of support she requires. She is not used to me being overwhelmed, putting myself on time outs or yelling and with her issues takes all of them to heart.
Returning to school is one of the most difficult times of year for her. This year as been worse because it has taken two weeks to get her school to put the correct supports in place for her. She is also extremely anxious about leaving mommy at home by herself in case I need help and there is nobody here. I have addressed things with the school once again (3 meetings, one before school started and one each week of school) and they have finally got things sorted out there. We constantly reassure her that I have all of the support that I need with family who all live within 5 minutes of here should I need them. Add to this the fact that she seems to be going through a stage that has her very uncooperative, argumentative and did I mention uncooperative? and add with that no patience, no tolerance for noise and isolation and you have a very unhealthy mix.
In all of my reading about my diseases (Rheumatoid Arthritis, Fibromyalgia, Hashimoto's Thyroiditis) I have never read about the impact on chronic illness on families. How do we help families especially children to understand about these illnesses? What tools / strategies are out there for individuals like myself to deal with these issues that come forward when dealing with chronic illness?
I hade a conversation with one of the Arthritis Society Social Workers earlier today around all of these issues and she has reassured me I am not changing. If we took away all of my health issues I would go back to the me I know and love. It is a stressful time mourning and coming to terms with all of the changes, the deformities, the things I can no longer do and the number of things I have to find creative ways of doing. She believes I am being much too hard on my self as the incidents are few and far between. My relationships with my kids remain healthy and strong. I have already apologized to them and now that I see the pattern in my behaviour I have the power to count to ten before I react..allowing time to think rather than react strictly on emotion. I know she is right and it isn't as bad as it feels. It is just so unlike me. I think the real issue is that it is such a big adjustment and I am scared that I am going to lose myself in the process watching my body deteriorate.
Now that these areas have been identified I need to do my best to address them. I really do hope that I am wrong and that I can find a way to deal with these in a more positive way. Right now it feels like I am fighting these diseases and losing...and my family is losing. That doesn't sit well with me.
I would really appreciate hearing any thoughts, insight, feedback, strategies, suggestions or sources for information that you are aware of.
© 2011 Rhonda
Random Thoughts
It is time to bring some visibility to Auto-Immune Diseases. Opportunities to educate and bring awareness are few and far between. How do we bring about opportunities to spread the word about Auto-Immune Diseases? I would love to hear your ideas!
These diseases are very complex and misunderstood. The symptoms over lap and it can take a very long time and a dedicated team of Dr's to determine the correct diagnosis and treatment. In the case of my Rheumatoid Arthritis finding credible information was difficult. There is a lot of garbage out there and even more false and misleading claims of cures for RA. How do we get credible information out there? The commercials that are on television make me sick, they make it look like this disease is easy treated and patients who take it get their lives back. Sadly, this is not the reality many RA patients live with.
As I have mentioned before I found and love the RAWarrior site and then other sources for information have been Webmd, John Hopkins, The Cleveland Clinic etc. Now these are wonderful and informative sites BUT they are not Canadian. Things work differently here in Canada and it would be nice to have information that is relevant to the Canadian experience. We have different procedures, different access to testing, different medications etc. Has anybody else experienced this? Are you aware of sites (other than the Arthritis Society) that are Canadian?
I look forward to hearing your thoughts and suggestions :)
© 2011 Rhonda
These diseases are very complex and misunderstood. The symptoms over lap and it can take a very long time and a dedicated team of Dr's to determine the correct diagnosis and treatment. In the case of my Rheumatoid Arthritis finding credible information was difficult. There is a lot of garbage out there and even more false and misleading claims of cures for RA. How do we get credible information out there? The commercials that are on television make me sick, they make it look like this disease is easy treated and patients who take it get their lives back. Sadly, this is not the reality many RA patients live with.
As I have mentioned before I found and love the RAWarrior site and then other sources for information have been Webmd, John Hopkins, The Cleveland Clinic etc. Now these are wonderful and informative sites BUT they are not Canadian. Things work differently here in Canada and it would be nice to have information that is relevant to the Canadian experience. We have different procedures, different access to testing, different medications etc. Has anybody else experienced this? Are you aware of sites (other than the Arthritis Society) that are Canadian?
I look forward to hearing your thoughts and suggestions :)
© 2011 Rhonda
Monday, September 12, 2011
Hashimoto's Thyroiditis What Is It?
Before I begin today's blog I would just like to remind people. I am a patient who suffers with the diseases that I am trying to share an understanding of. The information that I am sharing is made from notes of my initial research in trying to understand my diagnosis'. I kept mostly to highly trusted sites such as the Mayo Clinic, Web MD, Cleveland Clinic, RAWarrior etc. What I am sharing is my interpretation of my research. Facts as I understand them to be.
Hashimoto's Thyroiditis
In my last post I had decided that it would be helpful for me to provide some background information with regards to my illnesses. Hashimoto's Thyroiditis is an autoimmune disease that results in having hypothyroidism. It is common for people with Hashimoto's to develop Hashitoxcosis which is a combination of Hashimoto's Disease and Graves Disease (which is hyperthyroidism which is the polar opposite of hypothyroidism). Hashitoxcosis is a combination of both diseases with symptoms that swing back and fourth between the two polar opposites. Talk about a body in confusion! Luckily the Hashitoxcosis is something that does not last and your symptoms will return to Hypothyroidism and stay consistent.
There are many different ways for Hashimoto's Thyroiditis to be diagnosed. I was under investigation for MS at the time. I had spoken to a friend of mine who suggested that my symptoms sounded a lot like hers and that I should have my thyroid checked. I laughed because I have had my Dr. run thyroid tests yearly since the birth of my daughter in 2002. By this point I had under gone more tests trying to pinpoint the cause of all of my symptoms and I was grasping at straws. I mentioned it to my Dr who decided this time to do an ultrasound of my thyroid. The ultrasound revealed a cyst on my throid at which point my Dr. ordered a thyroid scan and uptake and more specific blood work than just checking my TSH levels. A diagnosis of Hashimoto's quickly followed.
Hashimoto's disease, also known as chronic lymphocytic thyroiditis which is when, your immune system attacks your thyroid gland. The resulting inflammation often leads to an underactive thyroid gland (hypothyroidism), As with any auto-immune the symptoms vary according to the individual but here is an outline of basic symptoms related to it:
Chronic Fatigue
Increased sensitivity to cold
Brain fog, difficulty concentrating
Constipation
Pale, dry skin
A puffy face
Hoarse voice
An elevated blood cholesterol level
Unexplained weight gain — occurring infrequently and rarely exceeding 10 to 20 pounds, most of which is fluid
Muscle aches, tenderness and stiffness, especially in your shoulders and hips
Pain and stiffness in your joints and swelling in your knees or the small joints in your hands and feet
Muscle weakness, especially in your lower extremities including heart failure
Excessive or prolonged menstrual bleeding (menorrhagia)
Depression
Hair loss, dry and brittle
Numbness, tingling and burning in your extremities and face/head
Carpel Tunnel
I was truly amazed at how complex this whole thing is and just how sever the symptoms can be when it has been left untreated. You can be symptomatic all the while falling into "normal ranges" in your blood work. Had I known all those years of having him check my TSH levels I would have pushed for a through screening of titers etc. The more I learn I have realized that most sites you get information from dumb it down to the point where they only discuss a few symptoms and they minimize the impact that it has. This appears to be very common when it comes to Auto-Immune Diseases. I was so confused and yet excited at the same time. I thought that this was the answer to all of my problems and even better I can take synthetic thyroid hormone and everything will go back to normal.
I was so happy to get to the bottom of my health issues. My family Dr. pushed and made it clear that this was not all that was wrong with me. My symptoms were too severe for my numbers. I was unconvinced but agreed to continue seeing specialists until we got to the bottom of things as long as he would agree to treat the Hashimoto's so that we could get those symptoms removed and see if the remaining symptoms left us with a clearer picture of what was wrong. We started treatment immediately, slowing increasing the dose each month. Initially I had more energy than I had had in months but that didn't last long. In fact the only symptom that it took off my plate was my hair falling out. I am glad that he insisted that we needed to keep going until we got to the bottom of things. He was clear my symptoms were very concerning and made referrals to Mount Sinai in Toronto which is a teaching hospital and has a wonderful and amazing Auto-Immune/Rheumatology Clinic.
Due to the Hashimoto's Disease I was more likely to have an additional auto-immune disease. It is rare that an individual with an auto-immune disease has just one. Although one is more than enough for anybody! I had previously had RA and Lupus ruled out by another Rheumatologist in early February. The Dr. that I had seen at the time ordered a small handful of tests looking for inflammation markers. He had explained the one test the Anti-CCP was going to cost me $70-$90. When I went to the lab they did not charge me. I asked if they were sure they were doing the correct test as I was told to expect to pay between $70 and $90 depending on the lab. They told me that there was no longer a fee associated to the test and that the Dr. was incorrect. When I went in for my results I was told they ran the wrong test but that all of my other numbers looked good so there was no need to re-order that test. 5 months later it was the Anti-CCP test that provided the diagnosis of RA along with my newly developed rheumatoid nodules and symptoms. I was also diagnosed with Fibromyalgia which is common with Irritable bowel Syndrome which I have had for 22 years and auto-immune diseases, although it is not an auto-immune disease itself.
Also interesting to note that often people diagnosed with Fibromyalgia and Anxiety Disorders often have Hashimoto's!
I hope this explanation of Hashimoto's Thyroiditis has provided a little insight into one of the auto-immune diseases that I have.
You might notice that a number of the symptoms listed overlap with numerous other auto-immune disorders. For me there is certainly an overlap between the three diseases I have been diagnosed with.
Do you have Hashimoto's Thyroiditis? Other Auto-Immune Diseases? More than one? If you have any questions don't hesitate to ask. Please feel free to leave comments or questions.
© 2011 Rhonda
Hashimoto's Thyroiditis
In my last post I had decided that it would be helpful for me to provide some background information with regards to my illnesses. Hashimoto's Thyroiditis is an autoimmune disease that results in having hypothyroidism. It is common for people with Hashimoto's to develop Hashitoxcosis which is a combination of Hashimoto's Disease and Graves Disease (which is hyperthyroidism which is the polar opposite of hypothyroidism). Hashitoxcosis is a combination of both diseases with symptoms that swing back and fourth between the two polar opposites. Talk about a body in confusion! Luckily the Hashitoxcosis is something that does not last and your symptoms will return to Hypothyroidism and stay consistent.
There are many different ways for Hashimoto's Thyroiditis to be diagnosed. I was under investigation for MS at the time. I had spoken to a friend of mine who suggested that my symptoms sounded a lot like hers and that I should have my thyroid checked. I laughed because I have had my Dr. run thyroid tests yearly since the birth of my daughter in 2002. By this point I had under gone more tests trying to pinpoint the cause of all of my symptoms and I was grasping at straws. I mentioned it to my Dr who decided this time to do an ultrasound of my thyroid. The ultrasound revealed a cyst on my throid at which point my Dr. ordered a thyroid scan and uptake and more specific blood work than just checking my TSH levels. A diagnosis of Hashimoto's quickly followed.
Hashimoto's disease, also known as chronic lymphocytic thyroiditis which is when, your immune system attacks your thyroid gland. The resulting inflammation often leads to an underactive thyroid gland (hypothyroidism), As with any auto-immune the symptoms vary according to the individual but here is an outline of basic symptoms related to it:
Chronic Fatigue
Increased sensitivity to cold
Brain fog, difficulty concentrating
Constipation
Pale, dry skin
A puffy face
Hoarse voice
An elevated blood cholesterol level
Unexplained weight gain — occurring infrequently and rarely exceeding 10 to 20 pounds, most of which is fluid
Muscle aches, tenderness and stiffness, especially in your shoulders and hips
Pain and stiffness in your joints and swelling in your knees or the small joints in your hands and feet
Muscle weakness, especially in your lower extremities including heart failure
Excessive or prolonged menstrual bleeding (menorrhagia)
Depression
Hair loss, dry and brittle
Numbness, tingling and burning in your extremities and face/head
Carpel Tunnel
I was truly amazed at how complex this whole thing is and just how sever the symptoms can be when it has been left untreated. You can be symptomatic all the while falling into "normal ranges" in your blood work. Had I known all those years of having him check my TSH levels I would have pushed for a through screening of titers etc. The more I learn I have realized that most sites you get information from dumb it down to the point where they only discuss a few symptoms and they minimize the impact that it has. This appears to be very common when it comes to Auto-Immune Diseases. I was so confused and yet excited at the same time. I thought that this was the answer to all of my problems and even better I can take synthetic thyroid hormone and everything will go back to normal.
I was so happy to get to the bottom of my health issues. My family Dr. pushed and made it clear that this was not all that was wrong with me. My symptoms were too severe for my numbers. I was unconvinced but agreed to continue seeing specialists until we got to the bottom of things as long as he would agree to treat the Hashimoto's so that we could get those symptoms removed and see if the remaining symptoms left us with a clearer picture of what was wrong. We started treatment immediately, slowing increasing the dose each month. Initially I had more energy than I had had in months but that didn't last long. In fact the only symptom that it took off my plate was my hair falling out. I am glad that he insisted that we needed to keep going until we got to the bottom of things. He was clear my symptoms were very concerning and made referrals to Mount Sinai in Toronto which is a teaching hospital and has a wonderful and amazing Auto-Immune/Rheumatology Clinic.
Due to the Hashimoto's Disease I was more likely to have an additional auto-immune disease. It is rare that an individual with an auto-immune disease has just one. Although one is more than enough for anybody! I had previously had RA and Lupus ruled out by another Rheumatologist in early February. The Dr. that I had seen at the time ordered a small handful of tests looking for inflammation markers. He had explained the one test the Anti-CCP was going to cost me $70-$90. When I went to the lab they did not charge me. I asked if they were sure they were doing the correct test as I was told to expect to pay between $70 and $90 depending on the lab. They told me that there was no longer a fee associated to the test and that the Dr. was incorrect. When I went in for my results I was told they ran the wrong test but that all of my other numbers looked good so there was no need to re-order that test. 5 months later it was the Anti-CCP test that provided the diagnosis of RA along with my newly developed rheumatoid nodules and symptoms. I was also diagnosed with Fibromyalgia which is common with Irritable bowel Syndrome which I have had for 22 years and auto-immune diseases, although it is not an auto-immune disease itself.
Also interesting to note that often people diagnosed with Fibromyalgia and Anxiety Disorders often have Hashimoto's!
I hope this explanation of Hashimoto's Thyroiditis has provided a little insight into one of the auto-immune diseases that I have.
You might notice that a number of the symptoms listed overlap with numerous other auto-immune disorders. For me there is certainly an overlap between the three diseases I have been diagnosed with.
Do you have Hashimoto's Thyroiditis? Other Auto-Immune Diseases? More than one? If you have any questions don't hesitate to ask. Please feel free to leave comments or questions.
© 2011 Rhonda
Wednesday, August 24, 2011
You know what the say about best laid plans...
When I first became unwell all I wanted was a diagnosis. I was convinced that once we had a diagnosis I would start treatment and have my life back! It was a simple enough plan so I should have known that it would not go accordingly.
I am now receiving treatment for my Hashimoto's (auto-immune hypothyroid), Fibromyalgia and Rheumatoid Arthritis. The medications make me sick. The chemo and antimalarial medications for the RA are the most vial medications going. The methotrexate (chemo drug) leaves me bedridden for at least 2 days after I have taken it and another 2 days for me to feel okay. This is on top of always being tired, in pain and various joints swollen and not working. Also, can't forget the brain fog which seems to be worse with these medications. So three days with the usual complaints and then we get to start the madness all over again.
I am more than my illness but my illness takes so much out of me it feels like there is little else left. I am sick and tired of sick and tired.
I saw an OT yesterday from the Arthritis Society. I need custom bilateral resting hand splints to sleep in at night. To prevent my hands from balling into fists, making them so stiff that it can be hours before I can straighten them in the morning. The wrist splints to wear during the day to support my wrists when they are sore or I am working on the computer. I need to see my Dr. to get prescriptions for these so that insurance will cover the cost. I have been given hand and shoulder exercises to help keep my range of motion in my joints. I get frustrated because I cannot get my fingers into the proper positions for many of the exercises. The OT is hopeful that with time I will regain that ability. Right now it is just frustrating.
It is wonderful to use this blog to express what I am feeling and going through. It helps immensely to be able to get it out. It will also be able to hopefully to show my progress as I come to terms with my diagnosis' and treatment begins to work. Holding out for better days and if you happen to find my sense of humour and positive attitude running amok please send them back to me, they are dearly missed!
© 2011 Rhonda
I am now receiving treatment for my Hashimoto's (auto-immune hypothyroid), Fibromyalgia and Rheumatoid Arthritis. The medications make me sick. The chemo and antimalarial medications for the RA are the most vial medications going. The methotrexate (chemo drug) leaves me bedridden for at least 2 days after I have taken it and another 2 days for me to feel okay. This is on top of always being tired, in pain and various joints swollen and not working. Also, can't forget the brain fog which seems to be worse with these medications. So three days with the usual complaints and then we get to start the madness all over again.
I am more than my illness but my illness takes so much out of me it feels like there is little else left. I am sick and tired of sick and tired.
I saw an OT yesterday from the Arthritis Society. I need custom bilateral resting hand splints to sleep in at night. To prevent my hands from balling into fists, making them so stiff that it can be hours before I can straighten them in the morning. The wrist splints to wear during the day to support my wrists when they are sore or I am working on the computer. I need to see my Dr. to get prescriptions for these so that insurance will cover the cost. I have been given hand and shoulder exercises to help keep my range of motion in my joints. I get frustrated because I cannot get my fingers into the proper positions for many of the exercises. The OT is hopeful that with time I will regain that ability. Right now it is just frustrating.
It is wonderful to use this blog to express what I am feeling and going through. It helps immensely to be able to get it out. It will also be able to hopefully to show my progress as I come to terms with my diagnosis' and treatment begins to work. Holding out for better days and if you happen to find my sense of humour and positive attitude running amok please send them back to me, they are dearly missed!
© 2011 Rhonda
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