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
Showing posts with label Hashimotos. Show all posts
Showing posts with label Hashimotos. Show all posts
Monday, January 2, 2012
Wednesday, December 7, 2011
Health & Homeschooling Update
So much has happened since I blogged last I don't know where to begin. I have not been doing well hence my absence.
I have a new Rheumatologist at Sunnybrook hospital and she is AMAZING. She actually listened to me for two hours in her office. Just the two of us with no flunkies (students/interns) to be seen. She did a through examination. She asked me where my meds were fore my Raynauds and Sjorgens. I told her I was not diagnosed with either of those things hence no medications. She then diagnosed Raynauds Phenomenon and Secondary Sjorgens. Two and a half weeks ago I had a lip biopsy to confirm the Sjorgens. This is rather painful as the section they removed for the biopsy is right at the base of the gums on the inside of your mouth and the stitches rub every time you move, chew or breath. Not to mention that my mouth is even drier than usual. He also had me spit into a cup for a period of 20 minutes and was very concerned when he saw that I only had less than 1ml of saliva. I worked darn hard to get that much for him. My mouth is so dry that I cannot eat without a drink. If I try to swallow food without a drink I choke. I am often scared as my mouth seems to have forgotten how to swallow on occasions. Eventually I will swallow but this happens when there is nothing in my mouth other then very small amounts of saliva. Insanely scary when it happens. The biopsy was completed by a Dental Pathologist and confirmed the diagnosis. He also confirmed that I had RA in jaw joints and the lump on my lower left jaw is a nodule. I couldn't believe that considering it is the size of a golf ball and all of my other nodules are rather small in size.
My new Rheumy also ordered: blood work, hand feet and chest x-rays, Doppler testing on all my extremities, an ophthalmologist appointment to review my eyes (check up since I am on Plaquinil and because of the Sjorgens) and a pulmonary function test. She increased my methotrexate and said she would see me again in three weeks. Hopefully then we would have the majority of test results back so that we could make treatment decisions.
In the mean time she also wanted me to quit smoking! I have tried several times a year for the past three years. I have tried hypnosis, medications, laser, acupuncture, cold turkey and anything and everything there is out there. I have not achieved success or anything close to it. Heck I can't get past day three, so for her to say it like it is an easy thing to do quickly is almost laughable. I will try and figure out a way, but honestly the chemo that they put in my body is worse and more harmful than smoking...but I still need to quit. Just not sure how or when. I am so stressed being chronically ill, still getting over pneumonia, in chronic pain each and every day just does not lend itself to success. Any ideas would be greatly appreciated but please no lectures.
Due to having Raynauds I've been told that I can only where socks that are 80% + silk. While light weight they will keep my feet warm while wicking away sweat which is what makes most people's feet cold winter. I have also had to eliminate caffeine for my diet and I have to quit smoking . This means caffeine free soda, no coffee or tea and worst of all no chocolate! As if all of these autoimmune diseases aren't enough they want to take away my chocolate too... Just doesn't seem fair few asked me...lol
The other exciting thing that is happened since I wrote last is that I am now home schooling my son and daughter. This has been a wonderful learning experience for all and the transition for the most part has gone well. I am quite sure come January that we will have a wonderful schedule worked out. While we are on week three, I have had an extraordinary amount of tests completed with having a new Rheumatologist. It really has been a crazy few weeks. Mostly we have focused on: math, language, reading and writing. come the new year we will add social studies and science. I have also found a wonderful artist whose studio is about 15 min. away and the kids will be taking weekly art lessons. Week one will be pencil drawings, week two will be pottery, week three will be watercolors and the final week will be the children's choice.
It is been interesting to learn what teaching styles my children learn from the best. This also varies by subject, you know just to keep it interesting...lol This is been a wonderful opportunity to spend time with my children while working closely with them to achieve their educational goals. To watch my son on a Monday throw temper tantrum ( like I haven't seen since he was two) because four digit addition with carrying was too hard. He declared that he didn't get it last year and he was never going to get it so I should forget about it and leave him alone! I reminded him that learning new things depends on two factor's 1) the teacher and 2)his attitude. I agreed and four digit addition equations were hard but that I also believed that he was very capable of doing things that were hard. If he changed his attitude and believed that he could do it then I promised to never give up and that I would continue to find new ways to teach him until he was successful in learning how to do those types of math questions. By Wednesday his self-confidence was through the roof! He challenged me to come up with longer and longer questions. Eventually we wrote a 33 digit math question on the whiteboard that he completed correctly for his dad when he came home from work. Seeing the change in his self-confidence was what made me positive I had done the right things by pulling them out of school and deciding to homeschool. All three of us are very happy with our decision. Oh ya so is my husband :) It is going to take some getting used to but I am sure once all of my tests are out of the way and the Christmas season is over that we will settle into a nice routine to see out the school year.
I saw my wonderful new Rheumatologist today. she confirmed I have permanent damage in my fingers and toes from the RA. For the first time my CRP levels are high. Up until today the only test that showed/confirmed RA was the anti-CCP. She said that it is very clear that I have severe and aggressive RA. She is concerned about my lungs and therefore did not increase my methotrexate again. She added an additional DMARD called Sulfasalazine which I will begin tomorrow. Apparently when it comes to RA it is the combination of three DMARD's or two DMARD's and a biologic that has the greatest success rate in seeing improvements in RA patients. If my pulmonary function tests and my chest x-ray come back with any concerns than she may discontinue my methotrexate and she may or may not be able to proceed with biologic treatment. This has me worried but I'm trying very hard not to think about what will happen if I can no longer take my methotrexate nor biologic treatment. I keep reminding myself that worry is like a rocking chair it gives us something to do but it doesn't get us anywhere.
On the brighter side thanks to online shopping I have completed all of my Christmas shopping. Just waiting for all of my deliveries. This gives me a couple of weeks to get everything wrapped and ready for Christmas Eve. I am very much looking forward to Christmas, it is my favorite holiday. Thanks to my wonderful husband, children and parents my house and Christmas tree have been decorated.
Are you ready for Christmas? What are your favorite family traditions? I know the next few weeks will be busy but I promise to do my best and check in with a couple of posts between now and Christmas.
Thanks for reading and I look forward to hearing from you!
© 2011 Rhonda
I have a new Rheumatologist at Sunnybrook hospital and she is AMAZING. She actually listened to me for two hours in her office. Just the two of us with no flunkies (students/interns) to be seen. She did a through examination. She asked me where my meds were fore my Raynauds and Sjorgens. I told her I was not diagnosed with either of those things hence no medications. She then diagnosed Raynauds Phenomenon and Secondary Sjorgens. Two and a half weeks ago I had a lip biopsy to confirm the Sjorgens. This is rather painful as the section they removed for the biopsy is right at the base of the gums on the inside of your mouth and the stitches rub every time you move, chew or breath. Not to mention that my mouth is even drier than usual. He also had me spit into a cup for a period of 20 minutes and was very concerned when he saw that I only had less than 1ml of saliva. I worked darn hard to get that much for him. My mouth is so dry that I cannot eat without a drink. If I try to swallow food without a drink I choke. I am often scared as my mouth seems to have forgotten how to swallow on occasions. Eventually I will swallow but this happens when there is nothing in my mouth other then very small amounts of saliva. Insanely scary when it happens. The biopsy was completed by a Dental Pathologist and confirmed the diagnosis. He also confirmed that I had RA in jaw joints and the lump on my lower left jaw is a nodule. I couldn't believe that considering it is the size of a golf ball and all of my other nodules are rather small in size.
My new Rheumy also ordered: blood work, hand feet and chest x-rays, Doppler testing on all my extremities, an ophthalmologist appointment to review my eyes (check up since I am on Plaquinil and because of the Sjorgens) and a pulmonary function test. She increased my methotrexate and said she would see me again in three weeks. Hopefully then we would have the majority of test results back so that we could make treatment decisions.
In the mean time she also wanted me to quit smoking! I have tried several times a year for the past three years. I have tried hypnosis, medications, laser, acupuncture, cold turkey and anything and everything there is out there. I have not achieved success or anything close to it. Heck I can't get past day three, so for her to say it like it is an easy thing to do quickly is almost laughable. I will try and figure out a way, but honestly the chemo that they put in my body is worse and more harmful than smoking...but I still need to quit. Just not sure how or when. I am so stressed being chronically ill, still getting over pneumonia, in chronic pain each and every day just does not lend itself to success. Any ideas would be greatly appreciated but please no lectures.
Due to having Raynauds I've been told that I can only where socks that are 80% + silk. While light weight they will keep my feet warm while wicking away sweat which is what makes most people's feet cold winter. I have also had to eliminate caffeine for my diet and I have to quit smoking . This means caffeine free soda, no coffee or tea and worst of all no chocolate! As if all of these autoimmune diseases aren't enough they want to take away my chocolate too... Just doesn't seem fair few asked me...lol
The other exciting thing that is happened since I wrote last is that I am now home schooling my son and daughter. This has been a wonderful learning experience for all and the transition for the most part has gone well. I am quite sure come January that we will have a wonderful schedule worked out. While we are on week three, I have had an extraordinary amount of tests completed with having a new Rheumatologist. It really has been a crazy few weeks. Mostly we have focused on: math, language, reading and writing. come the new year we will add social studies and science. I have also found a wonderful artist whose studio is about 15 min. away and the kids will be taking weekly art lessons. Week one will be pencil drawings, week two will be pottery, week three will be watercolors and the final week will be the children's choice.
It is been interesting to learn what teaching styles my children learn from the best. This also varies by subject, you know just to keep it interesting...lol This is been a wonderful opportunity to spend time with my children while working closely with them to achieve their educational goals. To watch my son on a Monday throw temper tantrum ( like I haven't seen since he was two) because four digit addition with carrying was too hard. He declared that he didn't get it last year and he was never going to get it so I should forget about it and leave him alone! I reminded him that learning new things depends on two factor's 1) the teacher and 2)his attitude. I agreed and four digit addition equations were hard but that I also believed that he was very capable of doing things that were hard. If he changed his attitude and believed that he could do it then I promised to never give up and that I would continue to find new ways to teach him until he was successful in learning how to do those types of math questions. By Wednesday his self-confidence was through the roof! He challenged me to come up with longer and longer questions. Eventually we wrote a 33 digit math question on the whiteboard that he completed correctly for his dad when he came home from work. Seeing the change in his self-confidence was what made me positive I had done the right things by pulling them out of school and deciding to homeschool. All three of us are very happy with our decision. Oh ya so is my husband :) It is going to take some getting used to but I am sure once all of my tests are out of the way and the Christmas season is over that we will settle into a nice routine to see out the school year.
I saw my wonderful new Rheumatologist today. she confirmed I have permanent damage in my fingers and toes from the RA. For the first time my CRP levels are high. Up until today the only test that showed/confirmed RA was the anti-CCP. She said that it is very clear that I have severe and aggressive RA. She is concerned about my lungs and therefore did not increase my methotrexate again. She added an additional DMARD called Sulfasalazine which I will begin tomorrow. Apparently when it comes to RA it is the combination of three DMARD's or two DMARD's and a biologic that has the greatest success rate in seeing improvements in RA patients. If my pulmonary function tests and my chest x-ray come back with any concerns than she may discontinue my methotrexate and she may or may not be able to proceed with biologic treatment. This has me worried but I'm trying very hard not to think about what will happen if I can no longer take my methotrexate nor biologic treatment. I keep reminding myself that worry is like a rocking chair it gives us something to do but it doesn't get us anywhere.
On the brighter side thanks to online shopping I have completed all of my Christmas shopping. Just waiting for all of my deliveries. This gives me a couple of weeks to get everything wrapped and ready for Christmas Eve. I am very much looking forward to Christmas, it is my favorite holiday. Thanks to my wonderful husband, children and parents my house and Christmas tree have been decorated.
Are you ready for Christmas? What are your favorite family traditions? I know the next few weeks will be busy but I promise to do my best and check in with a couple of posts between now and Christmas.
Thanks for reading and I look forward to hearing from you!
© 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
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
Tuesday, August 2, 2011
Attitude
Living with chronic pain and fatigue is a challenge. I thought I understood what it is like for others who experience this kind of pain and fatigue. If I were honest, I quickly came to realize that I didn't have a clue what it was like to live that way day in and day out. It is one of those things that to truly understand you have to experience. I wouldn't wish that on anyone. The most frustrating part for me is that I am a mom to young children. My oldest is 19 but the two little ones are only 8 and 9. They still need me and better yet they are still at an age where they want me! It breaks my heart to not be able to make plans from one day to the next because we don't know how I will be feeling. We don't know how bad the humidity is going to be and blatantly we don't know if I will be physically capable of much more than getting out of bed! My fun factor has taken a serious hit. My husband and kids disagree but even I know the difference.
We play board games in my bed, watch movies, talk and get lost in wonderful books. We still do things like visit the Toronto Zoo. I have slowly been learning to do things differently than I used to. When we go to the zoo, we go for a couple of hours in the morning before the heat gets too bad. We use the zoomobile to get from continent to continent and when needed I can rent a wheelchair. Thank goodness we have a family membership and can go as many times as we would like. This has allowed us to see all of the zoo this year broken up into manageable chunks. I can't imagine being without a zoo membership. We also have an Ontario Science Center membership and the same rules apply except it allows us to go anytime of the day because of the air conditioning. Loving indoor activities in the heat of summer and the cold of winter.
Santa knocked it out of the park last year when he gave the kids the memberships for Christmas. Gifts that are remembered, used year round and do not clutter the house. Those family memberships have done wonders for us this year. I am looking to see what other memberships are available for things that are near by (as I don't travel distances well) and will encourage family activity year round. Mind you these two memberships will be hard to beat!
I have spent many an hour in the past 8 months feeling sorry for myself. My life turned upside down, the pain, the fatigue and not knowing if my legs will work from one day to the next. Having to use a cane to make sure that I stay on my own two feet rather than on my backside. Balance issues can be bad and certainly embarrassing when they occur in public. It is amazing the looks I get when I; use accessible parking (I have a permit), when I walk with a cane or on bad days when I use a wheelchair. I guess it is hard for people to understand when there isn't anything visible to help them understand. I have also become very aware of how inaccessible our city truly is. Again something you only see when you are faced with the challenge of having to get around. Our cities need to consider using individuals who use canes and wheelchairs to get around to be the ones to provide them with information on what is and isn't accessible.
I think the biggest lesson I have learned this year is that I have control over only one thing in my life. Yes, just one thing. My attitude. It is my attitude that makes a difference in my day to day life. I choose my attitude no different than I choose the clothing I am going to wear each day. My attitude affects how I feel, what I do and how I do it. It impacts each and every aspect of my life and the lives of those around me. I choose to see the glass as half full. I choose a positive attitude. I choose to surround myself with positive people that have positive attitudes. There isn't anything that I cannot accomplish if I approach it with a positive attitude.
I truly believe that attitude is half the battle. Once you are armed with a positive attitude you can do anything. Your attitude affects your ability to do everything. There are some quotes that I use to remind me about the value of a positive attitude and it's impact on my life.
"Do or Do Not there is no Try" - Yoda
"Destiny is not a matter of chance, It is a matter of choice, It is not something to be waited for, But rather something to be achieved" - William Jennings Bryan
"Be the change you want to see in the world" - Mahatma Ghandhi
"Dream as if you'll live forever. Live as if you'll die today" - James Dean
"When the student is ready the teacher will appear" - Buddhist Proverb
"You become what you think about" - Earl Nightingale
"To "try" is failure with honour" - Unknown
What does your attitude say about you? What are your favourite quotes that inspire and motivate you?
© 2011 Rhonda
We play board games in my bed, watch movies, talk and get lost in wonderful books. We still do things like visit the Toronto Zoo. I have slowly been learning to do things differently than I used to. When we go to the zoo, we go for a couple of hours in the morning before the heat gets too bad. We use the zoomobile to get from continent to continent and when needed I can rent a wheelchair. Thank goodness we have a family membership and can go as many times as we would like. This has allowed us to see all of the zoo this year broken up into manageable chunks. I can't imagine being without a zoo membership. We also have an Ontario Science Center membership and the same rules apply except it allows us to go anytime of the day because of the air conditioning. Loving indoor activities in the heat of summer and the cold of winter.
Santa knocked it out of the park last year when he gave the kids the memberships for Christmas. Gifts that are remembered, used year round and do not clutter the house. Those family memberships have done wonders for us this year. I am looking to see what other memberships are available for things that are near by (as I don't travel distances well) and will encourage family activity year round. Mind you these two memberships will be hard to beat!
I have spent many an hour in the past 8 months feeling sorry for myself. My life turned upside down, the pain, the fatigue and not knowing if my legs will work from one day to the next. Having to use a cane to make sure that I stay on my own two feet rather than on my backside. Balance issues can be bad and certainly embarrassing when they occur in public. It is amazing the looks I get when I; use accessible parking (I have a permit), when I walk with a cane or on bad days when I use a wheelchair. I guess it is hard for people to understand when there isn't anything visible to help them understand. I have also become very aware of how inaccessible our city truly is. Again something you only see when you are faced with the challenge of having to get around. Our cities need to consider using individuals who use canes and wheelchairs to get around to be the ones to provide them with information on what is and isn't accessible.
I think the biggest lesson I have learned this year is that I have control over only one thing in my life. Yes, just one thing. My attitude. It is my attitude that makes a difference in my day to day life. I choose my attitude no different than I choose the clothing I am going to wear each day. My attitude affects how I feel, what I do and how I do it. It impacts each and every aspect of my life and the lives of those around me. I choose to see the glass as half full. I choose a positive attitude. I choose to surround myself with positive people that have positive attitudes. There isn't anything that I cannot accomplish if I approach it with a positive attitude.
I truly believe that attitude is half the battle. Once you are armed with a positive attitude you can do anything. Your attitude affects your ability to do everything. There are some quotes that I use to remind me about the value of a positive attitude and it's impact on my life.
"Do or Do Not there is no Try" - Yoda
"Destiny is not a matter of chance, It is a matter of choice, It is not something to be waited for, But rather something to be achieved" - William Jennings Bryan
"Be the change you want to see in the world" - Mahatma Ghandhi
"Dream as if you'll live forever. Live as if you'll die today" - James Dean
"When the student is ready the teacher will appear" - Buddhist Proverb
"You become what you think about" - Earl Nightingale
"To "try" is failure with honour" - Unknown
What does your attitude say about you? What are your favourite quotes that inspire and motivate you?
© 2011 Rhonda
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