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 Diagnosis. Show all posts
Showing posts with label Diagnosis. Show all posts
Friday, January 13, 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
Thursday, September 15, 2011
"Today's Doctors"
I had an interesting conversation with my wonderful family Dr recently that I thought I would share. He was as frustrated as I was with my serious health issues that had yet to be diagnosed. I should also note that he is past retirement but so far is still going strong! Thank goodness I would be lost without him.
He wondered out loud about "Today's Dr's" and why they bother to go through years and years of medical school if they are only going to strictly rely on tests to make a diagnosis. He is so tired of referring patients to "new" specialists who refuse to diagnose based on visual symptoms and listening to patients. If the tests do not back up their theory then patients go undiagnosed and therefore untreated. How very sad!
He had told me that he can see a patient who visually has arthritis in their hands. He can see the inflammation, he can feel the inflammation upon examination and the patients description of the pain is consistent with arthritic pain. When he runs blood tests they do not back up what he sees and hears. He informed me that it can take 5+ years for arthritis inflammation to show in blood work. He is confident enough in his ability, experience and medical training to make the diagnosis and provide treatment. There is no reason that a patient should suffer for years untreated because the diagnosis cannot be confirmed with tests. This is the exact opposite of the majority of today's doctors.
Why spend thousands of dollars, and years and years of your time to become a Dr and in many cases extra years of schooling and tuition to specialize, if you are not going to use what you learned? To solely rely upon test results. It has amazed me the number of neurologists that I have seen that did not even want to look at the actual MRI scans for themselves. To double check those test results. I have heard so many times of things that were missed on a MRI, CT, X-Ray by the radiologist that delayed diagnosis. Why not take those 5-10 minutes to check for yourself?
All in all I was lucky to find a Rheumatologist who was willing to: listen to my history, perform her own examination and acknowledge me. She believed that even if inflammation is not showing in my blood work, that if I say I have had visible swelling I have had it. How refreshing to be believed! I am what is considered to have sero-negative RA which means that the blood labs do not back up my diagnosis. With the exception of the Anti-CCP which she explained is a specific RA predictor. My symptoms, apparent damage and nodules along with a family history of Auto-Immune diseases were more than enough for a diagnosis of active, aggressive RA with the high Anti-CCP.
What has your experience been with your doctors?
© 2011 Rhonda
He wondered out loud about "Today's Dr's" and why they bother to go through years and years of medical school if they are only going to strictly rely on tests to make a diagnosis. He is so tired of referring patients to "new" specialists who refuse to diagnose based on visual symptoms and listening to patients. If the tests do not back up their theory then patients go undiagnosed and therefore untreated. How very sad!
He had told me that he can see a patient who visually has arthritis in their hands. He can see the inflammation, he can feel the inflammation upon examination and the patients description of the pain is consistent with arthritic pain. When he runs blood tests they do not back up what he sees and hears. He informed me that it can take 5+ years for arthritis inflammation to show in blood work. He is confident enough in his ability, experience and medical training to make the diagnosis and provide treatment. There is no reason that a patient should suffer for years untreated because the diagnosis cannot be confirmed with tests. This is the exact opposite of the majority of today's doctors.
Why spend thousands of dollars, and years and years of your time to become a Dr and in many cases extra years of schooling and tuition to specialize, if you are not going to use what you learned? To solely rely upon test results. It has amazed me the number of neurologists that I have seen that did not even want to look at the actual MRI scans for themselves. To double check those test results. I have heard so many times of things that were missed on a MRI, CT, X-Ray by the radiologist that delayed diagnosis. Why not take those 5-10 minutes to check for yourself?
All in all I was lucky to find a Rheumatologist who was willing to: listen to my history, perform her own examination and acknowledge me. She believed that even if inflammation is not showing in my blood work, that if I say I have had visible swelling I have had it. How refreshing to be believed! I am what is considered to have sero-negative RA which means that the blood labs do not back up my diagnosis. With the exception of the Anti-CCP which she explained is a specific RA predictor. My symptoms, apparent damage and nodules along with a family history of Auto-Immune diseases were more than enough for a diagnosis of active, aggressive RA with the high Anti-CCP.
What has your experience been with your doctors?
© 2011 Rhonda
Thursday, August 18, 2011
Diagnosis - Rheumatoid Arthritis
Last week was an incredibly difficult week for me on so many different levels. On Tuesday I woke up with 4 nodules, one on each finger on my right hand. Wednesday I woke with an additional 4 nodules in the same spots on the left hand. There is only one disease that produces nodules and happens symmetrically...Rheumatoid Arthritis. By Thursday I woke with even more nodules and my hands swollen so badly that they were stuck in a rather deformed position. Three fingers point downwards and my pinky finger slightly straighter sticking off to the side on both hands.
I learned that I could no longer hold anything in my hands as I was unable to grip, pick up or hold any objects nor was I able to type. If I wanted a drink I had to hold my glass between my wrists. I am unable to turn door handles, get up from sitting unassisted (leg weakness and my knees and ankles give out on a regular basis) as I cannot use my cane because of my hands. The list of things that I could not do over a three day period was devastating. Each time I attempted to do something for myself I was met with failure. I cannot tell you how difficult those three days were. Finally on Sunday the swelling had reduced considerably and I was able to move my hands and hold a number of things again. The weakness seems to be staying and if I so too much of anything the swelling returns. New nodules continue to appear. I am thankful that they are smaller than most of the pictures I have found of them.
Saw my Rheumotologist Dr. M yesterday to follow up on the blood work I had completed 3 weeks prior. I knew the diagnosis before I saw her. There is only one disease that produces nodules, pain, swelling and curiously enough on both sides of the body. The confirmation of Rheumatoid Arthritis was given. My anti-ccp blood test was more than twice the acceptable limit and the appearance of nodules and swelling were all they needed to confirm. I was started on some pretty nasty medications one an anti-malarial drug the other a chemotherapy drug and then a new NSAID along with two other medications to deal with the side effects of the first two. Blood work every two weeks, visits with an Opthamologist every 6 months just to be able to take these medications safely. Even with all of these medications to combat the side effects I still feel like I was hit by a truck. I slept for 16 hours yesterday after taking them. I was so tired, nauseated and dizzy bed was the safest place for me. I remain tired, nauseated and dizzy today. I hope there is an adjustment period for the medications and that these side effects go away sooner than later.
Learning all I can about this disease and found a wonderful website/blog www.rawarrior.com that provides a wonderful source of news, encouragement and hope. Some days the depression is really bad. I guess all of these diagnosis (three in as many months Hashitoxcosis, Fibromyalgia and Rheumatoid Arthritis) are taking a cumulative toll. Time to adjust, time to relearn what I can and cannot do and then onward and upward. I will fight this with all I have but I have learned enough that nobody wins the fight.
© 2011 Rhonda
I learned that I could no longer hold anything in my hands as I was unable to grip, pick up or hold any objects nor was I able to type. If I wanted a drink I had to hold my glass between my wrists. I am unable to turn door handles, get up from sitting unassisted (leg weakness and my knees and ankles give out on a regular basis) as I cannot use my cane because of my hands. The list of things that I could not do over a three day period was devastating. Each time I attempted to do something for myself I was met with failure. I cannot tell you how difficult those three days were. Finally on Sunday the swelling had reduced considerably and I was able to move my hands and hold a number of things again. The weakness seems to be staying and if I so too much of anything the swelling returns. New nodules continue to appear. I am thankful that they are smaller than most of the pictures I have found of them.
Saw my Rheumotologist Dr. M yesterday to follow up on the blood work I had completed 3 weeks prior. I knew the diagnosis before I saw her. There is only one disease that produces nodules, pain, swelling and curiously enough on both sides of the body. The confirmation of Rheumatoid Arthritis was given. My anti-ccp blood test was more than twice the acceptable limit and the appearance of nodules and swelling were all they needed to confirm. I was started on some pretty nasty medications one an anti-malarial drug the other a chemotherapy drug and then a new NSAID along with two other medications to deal with the side effects of the first two. Blood work every two weeks, visits with an Opthamologist every 6 months just to be able to take these medications safely. Even with all of these medications to combat the side effects I still feel like I was hit by a truck. I slept for 16 hours yesterday after taking them. I was so tired, nauseated and dizzy bed was the safest place for me. I remain tired, nauseated and dizzy today. I hope there is an adjustment period for the medications and that these side effects go away sooner than later.
Learning all I can about this disease and found a wonderful website/blog www.rawarrior.com that provides a wonderful source of news, encouragement and hope. Some days the depression is really bad. I guess all of these diagnosis (three in as many months Hashitoxcosis, Fibromyalgia and Rheumatoid Arthritis) are taking a cumulative toll. Time to adjust, time to relearn what I can and cannot do and then onward and upward. I will fight this with all I have but I have learned enough that nobody wins the fight.
© 2011 Rhonda
Subscribe to:
Posts (Atom)