Today marks 1 year since my
life turned upside down and ultimately resulted with the following diagnosis': RA, Hashimoto's
Thyroiditis, Fibromyalgia, Raynauds and Sjogrens and they aren't sure
they have them all yet. Still undergoing more tests! It amazes me the
way auto-immune diseases cluster in
individuals. If you think about it though there is really one one auto-immune disease and depending on your symptoms and where it is attacking depends on what you are diagnosed with. My body is in a full out war with itself and I am stuck in the middle of a war zone!
I woke up on this day last year and thought I had a bad flu
coming on, well it wasn't the flu and the feeling hasn't left. At least this
year I know for the most part what is wrong and I am undergoing
treatment for all of the above. It is interesting how they declare that
we need early and aggressive treatment and then it can take forever to
get diagnosed. When you are finally diagnosed and they start you on
medications then they sit back and let you know that it will be 3-6months
before we can say for certain if the meds are going to work...so much for
early and aggressive treatments! You would think after a year of
waiting, waiting for dx, waiting for tests, waiting for test results,
waiting for new dr. appointments, waiting for follow up appointments
that I would be the most patient person ever but just the opposite is
true. I just suck at hurry up and wait...not a strength of mine that is for sure.
When I think of anniversaries I think of celebrations. I have never been one to hold on to the dates I have lost important people in my life. I celebrate the life that was lived and tend to stay away from what was lost. I remember love and happy memories. Yet, this date the date the changed my life forever refused to be buried down deep today. It needed recognition and I am not sure why. It has crossed my minds so many times today I decided that maybe if I put it in writing it would go away and stop torturing me. Yes, it feels like torture. Jan 12, 2011 I was on top of the world. I was healthy, I exercised, ate healthy, I was maintaining a 32lb loss, I was in love and loved by my family, I had a great job and I was excited about what the future had in store. Amazing what a difference 24 hours can make. It was after a week of feeling like I was going to die, that I went to my Dr's. I just couldn't manage the pain that I was in. I couldn't get comfortable, the pain unbearable. Little did I know that I have been displaying intermittent symptoms for years and this time it was here to stay.
There has to be something to this. A large number of individuals I have come across in forums etc. mention either this date or the date that they were diagnosed. It seems to have a haunting quality to it :(
For those of you with Chronic Illness do you remember when your symptoms became unbearable or the day you were diagnosed? I guess for me it was so clear cut between healthy one day and falling apart the next that I remember it so clearly.
© 2011 Rhonda
Showing posts with label Depression. Show all posts
Showing posts with label Depression. Show all posts
Friday, January 13, 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
Tuesday, September 13, 2011
Fibromyalgia 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.
Fibromyalgia
Fibromyalgia is a widely misunderstood disease. A large number of people argue that it is a catch all diagnosis. The medical community has come a long way in the past ten years in understanding Fibromyalgia. All blood tests and x-rays come back normal. Diagnosis is made my ruling out other diseases and reviewing symptoms that have been present for more than 6 months. There are also 18 tender points (seen in the picture below) that Dr's assess, a diagnosis is made if 11 or more of the tender points are positive. The cause is unknown but it is widely accepted by the medical community that there is a problem with the area of the brain that processes pain. It is also common for those who have Fibromyalgia suffer from nerve pain.
Fibromyalgia is a chronic syndrome in which a person experiences body-wide pain, tenderness and stiffness in the joints, muscles, tendons and soft tissues. It causes sleep problems and can be associated with depression and anxiety. While it is not an Auto-Immune disease it is commonly found in individuals who are diagnosed with Auto-Immune diseases. The pain from Fibromyalgia comes in many forms it can be: a dull ache, a burning sensation or shooting pain. In my case it is a combination of all three.
Fibromyalgia also causes what is coined "Fibro Fog" which is a way of describing the constant brain fog that individuals face. It impacts memory, concentration and recall. The other hallmark symptom of Fibromyalgia is chronic fatigue. You wake just as tired in the morning as you were when you went to bed the night before. Other sleep disturbances are often found along with depression.
Other symptoms of fibromyalgia may include:
Fibromyalgia
Fibromyalgia is a widely misunderstood disease. A large number of people argue that it is a catch all diagnosis. The medical community has come a long way in the past ten years in understanding Fibromyalgia. All blood tests and x-rays come back normal. Diagnosis is made my ruling out other diseases and reviewing symptoms that have been present for more than 6 months. There are also 18 tender points (seen in the picture below) that Dr's assess, a diagnosis is made if 11 or more of the tender points are positive. The cause is unknown but it is widely accepted by the medical community that there is a problem with the area of the brain that processes pain. It is also common for those who have Fibromyalgia suffer from nerve pain.
Fibromyalgia is a chronic syndrome in which a person experiences body-wide pain, tenderness and stiffness in the joints, muscles, tendons and soft tissues. It causes sleep problems and can be associated with depression and anxiety. While it is not an Auto-Immune disease it is commonly found in individuals who are diagnosed with Auto-Immune diseases. The pain from Fibromyalgia comes in many forms it can be: a dull ache, a burning sensation or shooting pain. In my case it is a combination of all three.
Fibromyalgia also causes what is coined "Fibro Fog" which is a way of describing the constant brain fog that individuals face. It impacts memory, concentration and recall. The other hallmark symptom of Fibromyalgia is chronic fatigue. You wake just as tired in the morning as you were when you went to bed the night before. Other sleep disturbances are often found along with depression.
Other symptoms of fibromyalgia may include:
- Irritable bowel syndrome (IBS)
- Memory and concentration problems
- Numbness and tingling in hands and feet
- Palpitations
- Reduced ability to exercise
- Tension or migraine headaches
Treatment consists of : medications (muscle relaxants, pain medication, anti-depressants, sleep medications etc) , exercise, stress reduction strategies, Cognitive Behavioural Interventions
Interestingly enough I have found a large number of individuals who have been diagnosed with Rheumatoid Arthritis have also been diagnosed with Fibromyalgia. In my case the two diagnosis came 3 weeks apart.
Have you been diagnosed with Fibromyalgia? Is that diagnosis in combination with an Auto-Immune Disease? Have you found anything that helps relieve your symptoms?
© 2011
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