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 Fibromyalgia. Show all posts
Showing posts with label Fibromyalgia. 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
Monday, January 2, 2012
Chronic Pain
On January 13th, 2012 I will have been living with Chronic illness resulting in chronic pain for exactly one year. Not one day in that entire year have I been pain free. It is a daunting statistic and if that isn't bad enough I know that there is a very high probability that the remainder of my life will be lived in pain. It is no wonder that Chronic Pain often coincides with chronic depression.
It was 8 months before we discovered the cause of my pain. I believed for all those months that if we just figured out the cause then we could treat it and it would go away. I look back at that time and think how naive I was and then I realize it was not nativity, it was how I got through some of the worst months of my life. Today I have a much better understanding of all of the things I have been diagnosed with and while I am not happy about it, I have accepted that this is the way life is. I cannot change it, I cannot wish it away so the best thing to do is to acknowledge the way it is and figure out a way to live my life so that I am not merely surviving but actually living. I decided when thinking about the new year that I was going to focus on the present in hopes that I could start living again even if it is with restrictions. None of these things do anything to help me deal with the crazy amount of pain that I live with. I cannot: think, wish, dream or bargain my way out of pain or the diagnosis'. The pain is very real and very bad.
Each day I live with a constant ache. Now please don't dismiss my ache try to think of it as more of a tooth ache and then you will have an idea. I have that ache in the joints of my feet, knees, hips, legs, back, shoulders, elbows, wrists, hands, neck and jaw. Then I have an ache in pretty much all of the muscles that surround those joints. So basically I ache from head to toe on both sides of my body because RA is special that way. That pain all on it's own, day in and day out is more than anyone should have to face. Then we can add the pain that comes in the form the feeling of somebody stabbing you with an ice pick in all of those joints...sounds more like a horror movie doesn't it.
Did you know that each foot and ankle contain 26 bones and 33 joints and more than 100 muscles. Now remember all those muscles ache and those joints often feel like they are on fire (in my feet especially), while being stabbed with an ice pick. I have often told my hubby I feel like my body is more like the old arcade pinball machines as the ice pick stabbing seems to jump from joint to joint, just as the pinball bounces around the machine from one area to another. When that is happening there is NOTHING that can be done to relieve the pain. Pain meds are a joke, they do not get rid of the pain they simply take the edge off , if you are lucky . If the pain is under an 8 and you take pain meds it takes the edge off enough so that you can actually function and think of something other than the pain. At the same time, I don't want to think what my pain would be like without my pain medication.
My Rheumatologist talks about pain scales. Pain scales mean nothing to me. Pain is subjective. I have had people complain to me about a certain pain and then apologize because they have no right to complain about such minor pain when I am in constant pain. and my standard response is no, you have every right to your pain. Your pain is what impacts your life and you have a right to your feelings and to express your pain and not have it compared to anyone else. We can all experience the same injuries but feel the pain differently. It also has to do with primary and secondary diagnosis. All of my diseases seem to have descended upon me at the same time. I think it is truly safe to say that my immune system is out of control attacking everything it shouldn't.
As for my Dr. she simply wants to know on a scale of 1-10 where my pain is. Not sure how that is helpful other than they want to hear that number going down when they meet with you. She has never asked me why I assign the number on that scale that I do. Behind the scenes is simply what am I able to do in relation to the pain. A ten on the pain scale is when I am unable to get out of bed, I cannot be distracted from the pain, I am in tears and begging for someone to make it go away, often questioning if I am going to make it or in the throws of it wishing I could die to make it stop. Yes, I have had pain that bad that I wished for my life to be over. Maybe it is the fact that we are dealing with the accumulated effects of the pain day in and day out. I have had more than my share of days where I have been in that much pain. In general I tend to stay around a 7-8 and you can often hear me say that life would be okay if we could get it down for a 5. A five I could consistently manage and then I wonder why anyone should have to live in pain at any number.
My family Dr. says that I should never let the pain get that bad. I take heavy duty pain meds 4x daily and even with those I live most days no less than a 7 and often 10+. This is to avoid the peaks and valley's with my pain. Trying to keep me on an even keal so that meds can do their job. I would hate to imagine where my pain is without my daily pain medications. I also use: heat, soaking in a hot tub (I have a walk in tub, thank goodness), ice packs, topical creams and rubs, music (believe it or not it is a known to decrease pain and depression!), meditation (I try but if the pain is over 8 it just doesn't work because I cannot focus on anything other than the pain) and anything I can think of. I used to use massage but that the last two times I went made things worse.
I recall seeing a pain scale that was helpful on RAWarrior.com but I was in so much pain when I saw it that I don't recall much about what it said other than I need to go back and find it. When I do I will share the link so that if you haven't already seen it, you can take a look and see if you find it helpful! It was actually a scale that RAWarrior linked to and here it is. I think I should consider printing this scale out and reviewing with my Dr. so that we are on the same pain scale page!
What do you do to manage your pain? Have you come across an effective pain scale? Please share your techniques for dealing with pain, preventing pain or if you have found an effective pain scale.
Looking forward to reading your comments!
© 2011 Rhonda
It was 8 months before we discovered the cause of my pain. I believed for all those months that if we just figured out the cause then we could treat it and it would go away. I look back at that time and think how naive I was and then I realize it was not nativity, it was how I got through some of the worst months of my life. Today I have a much better understanding of all of the things I have been diagnosed with and while I am not happy about it, I have accepted that this is the way life is. I cannot change it, I cannot wish it away so the best thing to do is to acknowledge the way it is and figure out a way to live my life so that I am not merely surviving but actually living. I decided when thinking about the new year that I was going to focus on the present in hopes that I could start living again even if it is with restrictions. None of these things do anything to help me deal with the crazy amount of pain that I live with. I cannot: think, wish, dream or bargain my way out of pain or the diagnosis'. The pain is very real and very bad.
Each day I live with a constant ache. Now please don't dismiss my ache try to think of it as more of a tooth ache and then you will have an idea. I have that ache in the joints of my feet, knees, hips, legs, back, shoulders, elbows, wrists, hands, neck and jaw. Then I have an ache in pretty much all of the muscles that surround those joints. So basically I ache from head to toe on both sides of my body because RA is special that way. That pain all on it's own, day in and day out is more than anyone should have to face. Then we can add the pain that comes in the form the feeling of somebody stabbing you with an ice pick in all of those joints...sounds more like a horror movie doesn't it.
Did you know that each foot and ankle contain 26 bones and 33 joints and more than 100 muscles. Now remember all those muscles ache and those joints often feel like they are on fire (in my feet especially), while being stabbed with an ice pick. I have often told my hubby I feel like my body is more like the old arcade pinball machines as the ice pick stabbing seems to jump from joint to joint, just as the pinball bounces around the machine from one area to another. When that is happening there is NOTHING that can be done to relieve the pain. Pain meds are a joke, they do not get rid of the pain they simply take the edge off , if you are lucky . If the pain is under an 8 and you take pain meds it takes the edge off enough so that you can actually function and think of something other than the pain. At the same time, I don't want to think what my pain would be like without my pain medication.
My Rheumatologist talks about pain scales. Pain scales mean nothing to me. Pain is subjective. I have had people complain to me about a certain pain and then apologize because they have no right to complain about such minor pain when I am in constant pain. and my standard response is no, you have every right to your pain. Your pain is what impacts your life and you have a right to your feelings and to express your pain and not have it compared to anyone else. We can all experience the same injuries but feel the pain differently. It also has to do with primary and secondary diagnosis. All of my diseases seem to have descended upon me at the same time. I think it is truly safe to say that my immune system is out of control attacking everything it shouldn't.
As for my Dr. she simply wants to know on a scale of 1-10 where my pain is. Not sure how that is helpful other than they want to hear that number going down when they meet with you. She has never asked me why I assign the number on that scale that I do. Behind the scenes is simply what am I able to do in relation to the pain. A ten on the pain scale is when I am unable to get out of bed, I cannot be distracted from the pain, I am in tears and begging for someone to make it go away, often questioning if I am going to make it or in the throws of it wishing I could die to make it stop. Yes, I have had pain that bad that I wished for my life to be over. Maybe it is the fact that we are dealing with the accumulated effects of the pain day in and day out. I have had more than my share of days where I have been in that much pain. In general I tend to stay around a 7-8 and you can often hear me say that life would be okay if we could get it down for a 5. A five I could consistently manage and then I wonder why anyone should have to live in pain at any number.
My family Dr. says that I should never let the pain get that bad. I take heavy duty pain meds 4x daily and even with those I live most days no less than a 7 and often 10+. This is to avoid the peaks and valley's with my pain. Trying to keep me on an even keal so that meds can do their job. I would hate to imagine where my pain is without my daily pain medications. I also use: heat, soaking in a hot tub (I have a walk in tub, thank goodness), ice packs, topical creams and rubs, music (believe it or not it is a known to decrease pain and depression!), meditation (I try but if the pain is over 8 it just doesn't work because I cannot focus on anything other than the pain) and anything I can think of. I used to use massage but that the last two times I went made things worse.
I recall seeing a pain scale that was helpful on RAWarrior.com but I was in so much pain when I saw it that I don't recall much about what it said other than I need to go back and find it. When I do I will share the link so that if you haven't already seen it, you can take a look and see if you find it helpful! It was actually a scale that RAWarrior linked to and here it is. I think I should consider printing this scale out and reviewing with my Dr. so that we are on the same pain scale page!
What do you do to manage your pain? Have you come across an effective pain scale? Please share your techniques for dealing with pain, preventing pain or if you have found an effective pain scale.
Looking forward to reading your comments!
© 2011 Rhonda
Wednesday, October 26, 2011
Dreams
On Wednesday October 5th one of my favourite blog authors Deb from the ABC's of RA wrote a blog called Hocus, Pocus, Refocus! I'll wait right here while you read this brilliant blog and then we can continue!
Welcome back...told you it was a very worthwhile read :-)
Deb really hit the nail on the head. October 2010 is when my health started to fall apart. Then I had the first two weeks of January where I thought finally things were turning around. Little did I know that I had two weeks to enjoy the last bit of "health" I will have for a long time. Since mid January I have been ill. Desperately looking for what was wrong. Reminding myself daily that the chronic pain, fatigue and a myriad of other strange occurrences were untreated. If I could just get a diagnosis things would go back to normal. I WOULD get my life back. It took 10 months and I had all three diagnosis. For those of you who are new to my blog they are: Hashimotos Thyroiditis, Fibromyalgia and Rheumatoid Arthritis. The hashimotos was promising a single pill a day and my thyroid would function normally...awesome...but I was wrong. My Dr. knew what I refused to believe that there was much more to this. 2 months later the Fibromyalgia was diagnosed. I have a family history of FMS so knew what I was in for. I was a little deflated but knew again with meds it could be managed for the most part. Then RA was diagnosed....that was 2.5 months ago.
Illness has taken over my life. First it was figuring out what was wrong, then treating what is wrong and the medications make me feel worse than I did to start. I am still not feeling any better. My life as I have known it for the past 40 years was over. But life was supposed to begin at 40...didn't my body get that memo?
Medication, Dr's appointments, tests and medication refills is what my life has become. Every single thing I choose to do in a day has a cost associated to it. Learning the economics of Chronic Illness has become my new reality. I am slowly learning to understand this new and uncooperative body of mine. I am learning to adjust daily activities to allow me to get the most done in a single day. Sadly most days I can commit to getting just a couple of small things done. Most days getting up and making my bed takes all the energy I have. Making kids lunches and getting them ready and out the door to school exhausts me. Once they are off, I log into work from my computer and make sure nobody is looking for me and then I curl up on the couch and rest while keeping half an eye on work. I now take showers only when my husband is home to help me in and out and of course to wash and condition my hair as I can no longer squeeze shampoo bottles. I keep saying I need to put my shampoo etc. into pumps...but I stay as far away from stores as possible. The walking (honestly less of walking more like shuffling), the looks from people who see a young woman with nothing visibly wrong (you would actually have to look closer than passersby bother to give) but clearly in immense pain, limping, shuffling along with her cane or leaning on a buggy for support. I would rather not go through that and don't for the most part. My husband does 99% of all of the shopping.
Speaking of shopping Christmas is just around the corner and it brings tears to my eyes. The overwhelming thought of trying to get all of my shopping done...sigh. I guess this year we will be trying out on-line shopping and hoping for the best. Oops sorry for the diversion but my daughter comes by her ADD (Attention Deficit Disorder) naturally!
Somewhere in the past year living stopped. Yes, technically I still breath and I am alive but I am watching life pass by with me as a bystander rather than an active participant. When my diagnosis took the wind out of my sails and my life became about learning how to live in a body that was no longer to be counted on I got lost along the way. My dreams were gone, I threw my hands in the air and focused on just getting through the day usually focused on getting through each individual hour minute by minute. I didn't consciously think of my dreams again until October 5th when Deb's blog reduced me to tears.
I have had a difficult few weeks since Deb's post. I have added being sick to my stomach daily which drains the life right out of me. At first I thought I caught a bug but since it does not get worse and the symptoms can be accounted for by active RA and medication side effects I am beginning to think I am wrong. Off to see the Dr. soon to get his opinion. I just have to find the energy to make that appointment. During this time I did however have time to think. Rather than feeling sorry for myself I focused on two things 1) Coming to terms with my diagnosis' which I will share with you in another blog. 2) What were my dreams? Are they still my dreams? What do I have to change to make those dreams possible even with my current limitations?
While I am still figuring out some things, there is one thing I do know. One must have dreams, ambitions and a purpose to life. We all need a reason to get up each and every day. My reason for living is my family: my husband, my children, my parents, my brother. One of my dreams was to work on completing a novel. There is a contest that begins November, the goal: to complete a novel in 30 days. I think it is time for me to find the links again and outline my novel and be ready to go in November. :)
A heart felt thanks to Deb for reminding me that although this is not the life I had planned on living it doesn't mean my life is not worth living! What are you dreams? What makes you get out of bed each and every day to face the world no matter how you are feeling?
© 2011 Rhonda
Welcome back...told you it was a very worthwhile read :-)
Deb really hit the nail on the head. October 2010 is when my health started to fall apart. Then I had the first two weeks of January where I thought finally things were turning around. Little did I know that I had two weeks to enjoy the last bit of "health" I will have for a long time. Since mid January I have been ill. Desperately looking for what was wrong. Reminding myself daily that the chronic pain, fatigue and a myriad of other strange occurrences were untreated. If I could just get a diagnosis things would go back to normal. I WOULD get my life back. It took 10 months and I had all three diagnosis. For those of you who are new to my blog they are: Hashimotos Thyroiditis, Fibromyalgia and Rheumatoid Arthritis. The hashimotos was promising a single pill a day and my thyroid would function normally...awesome...but I was wrong. My Dr. knew what I refused to believe that there was much more to this. 2 months later the Fibromyalgia was diagnosed. I have a family history of FMS so knew what I was in for. I was a little deflated but knew again with meds it could be managed for the most part. Then RA was diagnosed....that was 2.5 months ago.
Illness has taken over my life. First it was figuring out what was wrong, then treating what is wrong and the medications make me feel worse than I did to start. I am still not feeling any better. My life as I have known it for the past 40 years was over. But life was supposed to begin at 40...didn't my body get that memo?
Medication, Dr's appointments, tests and medication refills is what my life has become. Every single thing I choose to do in a day has a cost associated to it. Learning the economics of Chronic Illness has become my new reality. I am slowly learning to understand this new and uncooperative body of mine. I am learning to adjust daily activities to allow me to get the most done in a single day. Sadly most days I can commit to getting just a couple of small things done. Most days getting up and making my bed takes all the energy I have. Making kids lunches and getting them ready and out the door to school exhausts me. Once they are off, I log into work from my computer and make sure nobody is looking for me and then I curl up on the couch and rest while keeping half an eye on work. I now take showers only when my husband is home to help me in and out and of course to wash and condition my hair as I can no longer squeeze shampoo bottles. I keep saying I need to put my shampoo etc. into pumps...but I stay as far away from stores as possible. The walking (honestly less of walking more like shuffling), the looks from people who see a young woman with nothing visibly wrong (you would actually have to look closer than passersby bother to give) but clearly in immense pain, limping, shuffling along with her cane or leaning on a buggy for support. I would rather not go through that and don't for the most part. My husband does 99% of all of the shopping.
Speaking of shopping Christmas is just around the corner and it brings tears to my eyes. The overwhelming thought of trying to get all of my shopping done...sigh. I guess this year we will be trying out on-line shopping and hoping for the best. Oops sorry for the diversion but my daughter comes by her ADD (Attention Deficit Disorder) naturally!
Somewhere in the past year living stopped. Yes, technically I still breath and I am alive but I am watching life pass by with me as a bystander rather than an active participant. When my diagnosis took the wind out of my sails and my life became about learning how to live in a body that was no longer to be counted on I got lost along the way. My dreams were gone, I threw my hands in the air and focused on just getting through the day usually focused on getting through each individual hour minute by minute. I didn't consciously think of my dreams again until October 5th when Deb's blog reduced me to tears.
I have had a difficult few weeks since Deb's post. I have added being sick to my stomach daily which drains the life right out of me. At first I thought I caught a bug but since it does not get worse and the symptoms can be accounted for by active RA and medication side effects I am beginning to think I am wrong. Off to see the Dr. soon to get his opinion. I just have to find the energy to make that appointment. During this time I did however have time to think. Rather than feeling sorry for myself I focused on two things 1) Coming to terms with my diagnosis' which I will share with you in another blog. 2) What were my dreams? Are they still my dreams? What do I have to change to make those dreams possible even with my current limitations?
While I am still figuring out some things, there is one thing I do know. One must have dreams, ambitions and a purpose to life. We all need a reason to get up each and every day. My reason for living is my family: my husband, my children, my parents, my brother. One of my dreams was to work on completing a novel. There is a contest that begins November, the goal: to complete a novel in 30 days. I think it is time for me to find the links again and outline my novel and be ready to go in November. :)
A heart felt thanks to Deb for reminding me that although this is not the life I had planned on living it doesn't mean my life is not worth living! What are you dreams? What makes you get out of bed each and every day to face the world no matter how you are feeling?
© 2011 Rhonda
Friday, October 14, 2011
Rheumatology Appointment
Frustration is the name of the game. I saw my Rheumatologist yesterday and I have come home very unhappy with the outcome of the appointment. My first appointment was an assessment and tests. At that appointment she diagnosed me with Fibromyalgia. My second appointment was a result of my test results and I was called in and diagnosed with Rheumatoid Arthritis after I had a High Anti-CCP in my blood work and had developed numerous rheumatoid nodules the week before. I was started on Plaquinel and Methotrexate and a follow up appointment was scheduled for 2 months later. So yesterday I went to my follow up appointment.
I am sad to say that she was more focused on the paperwork in my file than listening to me. I asked questions, pointed out deformities in my feet and the difficulties I have walking as a result of toes that curl under, a big toe that is on a new angle and lays across the toe next to it, the swelling on the balls of my feet making it feel like walking on marbles and the burning in my feet when I stand more than 5 minutes. I have had no improvement in the past two months since I started medication. She completely ignored my feet, assessed my hands, charted and offered a shot in my hip (which I had complained of last time but hadn't gotten around to this time). While giving me a shot in my hip (no idea what it was) I was mentioning the itchy joints that I have, the fact that my hands won't straighten and are in a constant bent position. My bones near affected joints appear to have exploded and are 2-3x the normal size...she continued to ignor everything I said and declared I should go to a pain clinic because my Fibro was out of control, my RA is fine because there is no visible swelling so my meds will stay the same, because of joint and muscle pain she has declared I have amplified pain syndrome.
I come home to research amplified pain syndrome which declared that while the cause of pain is gone the central nervous system retains memory of pain where there is no cause...HOW ON EARTH CAN THERE BE NO CAUSE OF PAIN WITH A DX of RA and FIBROMYALGIA THAT HAS CAUSED DEFORMITY AND DISABILITY???? She see me back in 4 months at which time they will ultrasound to see if there is internal swelling and I should have an MRI of my hands and feet in that time. They have flagged my file because in 2 months they have managed to not yet book me an appointment. I am extremely frustrated and upset with all of this. I am seeing a top Doctor's at Mount Sinani Hospital in Toronto. Jay Keystone heads up this clinic (not my Dr though) and it is supposed to be one of the top in Canada and IS the TOP Rheumatology and Autoimmune Clinic in the province!!
My family Dr, two weeks ago told me that he could see more changes in my hands and feet since my x-rays (which would have been two weeks after the x-rays were completed) and that he really hoped she started treatment with a Biologic when I saw her as that is my best hope to stop the damage. What on earth am I going to do? Do I ask my family Dr. to make a new referral for a second opinion or do I stick this out for another appointment or two and see if this was just an off day for her?? I just don't want more damage to occur because she is not sure about what to do with me not being a text book RA patient! I had so much more to talk to her about but since she was ignoring me I gave up...Very frustrated at the moment.
Okay rant over...any suggestions would be greatly appreciated!!
© 2011 Rhonda
I am sad to say that she was more focused on the paperwork in my file than listening to me. I asked questions, pointed out deformities in my feet and the difficulties I have walking as a result of toes that curl under, a big toe that is on a new angle and lays across the toe next to it, the swelling on the balls of my feet making it feel like walking on marbles and the burning in my feet when I stand more than 5 minutes. I have had no improvement in the past two months since I started medication. She completely ignored my feet, assessed my hands, charted and offered a shot in my hip (which I had complained of last time but hadn't gotten around to this time). While giving me a shot in my hip (no idea what it was) I was mentioning the itchy joints that I have, the fact that my hands won't straighten and are in a constant bent position. My bones near affected joints appear to have exploded and are 2-3x the normal size...she continued to ignor everything I said and declared I should go to a pain clinic because my Fibro was out of control, my RA is fine because there is no visible swelling so my meds will stay the same, because of joint and muscle pain she has declared I have amplified pain syndrome.
I come home to research amplified pain syndrome which declared that while the cause of pain is gone the central nervous system retains memory of pain where there is no cause...HOW ON EARTH CAN THERE BE NO CAUSE OF PAIN WITH A DX of RA and FIBROMYALGIA THAT HAS CAUSED DEFORMITY AND DISABILITY???? She see me back in 4 months at which time they will ultrasound to see if there is internal swelling and I should have an MRI of my hands and feet in that time. They have flagged my file because in 2 months they have managed to not yet book me an appointment. I am extremely frustrated and upset with all of this. I am seeing a top Doctor's at Mount Sinani Hospital in Toronto. Jay Keystone heads up this clinic (not my Dr though) and it is supposed to be one of the top in Canada and IS the TOP Rheumatology and Autoimmune Clinic in the province!!
My family Dr, two weeks ago told me that he could see more changes in my hands and feet since my x-rays (which would have been two weeks after the x-rays were completed) and that he really hoped she started treatment with a Biologic when I saw her as that is my best hope to stop the damage. What on earth am I going to do? Do I ask my family Dr. to make a new referral for a second opinion or do I stick this out for another appointment or two and see if this was just an off day for her?? I just don't want more damage to occur because she is not sure about what to do with me not being a text book RA patient! I had so much more to talk to her about but since she was ignoring me I gave up...Very frustrated at the moment.
Okay rant over...any suggestions would be greatly appreciated!!
© 2011 Rhonda
Tuesday, October 4, 2011
World Arthritis Day - Wednesday October 12, 2011
This afternoon while reading the latest blog entry from RAGUY I learned that Wednesday October 12, 2011 is World Arthritis Day. I went to their website , clicked on the purple tab: WAD Around The World and clicked on the link for Toronto, Ontario (Canada). I was directed to our local provincial chapter of the Arthritis Society...to my surprise there was NO MENTION of World Arthritis Day on their home page, or any where on their website. I even did an advanced search and came up empty.
Last time I checked Canada was still part of the World...sheesh talk about further isolating individuals with arthritis than they already are. We should be shouting from the roof tops taking and making opportunity to raise awareness and educate people around Arthritis and the numerous diseases that often accompany an arthritis diagnosis. Did you know there are over 100 different types of arthritis? The majority of people who hear the word arthritis automatically think of Osteoarthritis and NOT of the much more severe auto-immune varieties such as Rheumatoid Arthritis.
I am so frustrated to learn that they (Ontario Chapter of the Arthritis Society) do not appear to be taking part in Education and Awareness on this day. World Arthritis Day was established in 1996 by Arthritis and Rheumatism International (ARI) and is celebrated each year on the 12th of October. So this is nothing new. I frequently visit our Provincial Chapter for information, services and headline news to ensure I am current. It has been the only source for Canadian content that I have found so far andI have researched too many hours to count since my diagnosis.
In most cases the information and issues surrounding Rheumatoid Arthritis, Fibromyalgia and Auto Immune Diseases in general comes from the USA and Europe. While the support gathered on message boards/facebook pages gives a wonderful sense of community there are: differences, challenges and ways of doing things unique to each Country/State/Province. I personally subscribe to numerous blogs and web sites for information and personal experiences and wish I had a resource for some things that are specifically Canadian. Please know that in no way does this take away from all of the communities that I belong to that are from other countries. These families created by sharing experiences have been a life line for me. I am just looking to round out the information if that makes any sense.
According to the Arthritis Society, Fibromyalgia is also under the umbrella of arthritis although not considered auto-immune it often travels with auto-immune related diseases. This means that two out of my three of my diagnosis are Arthritic/Rheumatic in nature. I feel an obligation to try to raise awareness and educate. This diagnosis blind sided me because I really had no idea of the severity of RA and was honestly gobsmacked to learn there are over 100 types of Arthritis and 100+ Auto-Immune Diseases. I never would have believed that morbidity rates and arthritis belonged together in any way. Boy did I have a lot to learn!
It was suggested to me that since I was so provoked with the lack of Canadian content that I should create a website for Rheumatoid Arthritis /Auto-Immune Education, Awareness and Support with information relevant to the Canadian experience. Today after seeing that our very own Arthritis Society isn't even using the World Arthritis Day to promote education and awareness I am seriously considering it! What do you think?
How will you support World Arthritis Day on Wednesday, October 12th, 2011? Remember you can donate to The Rheumatoid Patient Foundation this is a new organization and donations are very appreciated. If you click on the link you can read what they are currently raising much needed funds for. If you are unable to donate remember you can still help to spread awareness and to educate others. RA Guy has suggested that we share his 60 Second Guide to RA which you can view/print from here.
Perhaps you will be writing a blog in support of WAD. Please be sure to let me know by October 11th, so I can write a blog to be published at midnight of the 12th and let readers know what blogs to read on the 12th in honour of WAD. We can make a difference through education and awareness!!
Remember the Chinese proverb "Many hands make light work". I look forward to hearing from you!
© 2011 Rhonda
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