I have been on holiday for the past two weeks. Sadly they were two very difficult weeks with regards to my health. The up side was not having to deal with work on top of the incredible pain I have been in.
I got a phone call yesterday afternoon to say that some of my blood work has come back and my levels are extremely high indicating sever disease and that Dr.M needs to see me ASAP. However, she is on holidays next week so they are squeezing me in on Monday August 15th (her first day back to work). The receptionist who called me was able to tell me that the blood work indicated either Lupus or Rheumatoid Arthritis but that she wasn't sure which. The Dr. would explain everything to me when I see her on the 15th. So it looks like we finally have some answers as to what is at the bottom of my health issues and found a number of not so nice issues on the way. I am still shaking my head at the fact that since I have been unwell we have diagnosed: Hashitoxcosis (auto-immune thyroid disease), TMJ with a cyst on my brain at the jaw (still need to see my dentist about), 2 lesions on my brain in the white matter (no idea of the cause and they are not too worried at this point but recommend follow up with MRI's annually), Adrenal glad failure, nodules on my lung along with a thickening of the plural of my lung, oh ya, Menopause has begun and Fibromyalgia and believe it or not all of these are side issues!!! The biggest issue will be revealed when I see the Dr. on August 15th and it is either Rheumatoid Arthritis or Lupus. How on earth did all of these happen to me ALL AT THE SAME TIME???
The year before I got sick was honestly the healthiest year of my life. I had lost 32lbs taking me from Obese to a healthy BMI, was walking 5-10km a day and swimming laps (1km daily) in the summer and was beginning a strength training program. I was drinking 8 cups of water each day and eating 5 servings of fruits and veggies each day, I was sticking within my ranges for calories, fats, carbs. I have always struggled with consistently meeting my protein. I was also eating a high fiber diet between 35-45g of fiber daily. Still I had come a long way from where I was. That makes the past 8 months even more unreal and puzzling. I just wish I understood why this is happening all at the same time??
We spent my two weeks holidays doing family outings in the mornings and home and off my feet by the afternoons. I over did it which is perhaps why I was in such bad shape as far as pain is concerned. I ate poorly skipping meals. The new medication is playing havoc with my appetite and to top it all off, I crave is unhealthy foods either salty or sweet.
Back to reality now and work on Monday. I need to get back to tracking my foods and eating healthier and eating 3 meals a day. Waiting till the 15th feels like a lifetime away, that might just drive me around the bend knowing she has answers and I don't! Hopefully with answers comes treatment which will bring some relief to all of this pain.
At least the sleep medication is working but still feeling too dopey in the mornings. Going to try cutting the dose in half tonight and see if that works. Now if only it did something for the pain that it is supposed to treat! I am feeling rather down today, sick and tired of being sick and tired. I need to do something to get myself back on track and finding enjoyment in life again. I am very blessed to have such a supportive husband and children. They truly have been amazing in every sense of the word.
I had the kids at the zoo the other day for a couple of hours. They took turns with the backpack, checked in to see if I needed to sit down or have a drink. When I was clearly fatigued they asked if they could go home. I stared in disbelief and they said Mom you have had enough, your walking slower and we can tell you are in more pain than when we got here. We can come back another day. Thank you for taking us we had fun and we can go home and play and let you rest. Truly amazing kids for 8 and 9! So thoughtful, caring and they make me so very proud.
© 2011 Rhonda
Showing posts with label Lupus. Show all posts
Showing posts with label Lupus. Show all posts
Saturday, August 6, 2011
Wednesday, August 3, 2011
Spoon Theory
I had a very dear friend send me a link to something called spoon theory. For the first time since I became unwell I found the words to explain what I am experiencing. For anyone who has an auto-immune disease (Lupus, Fibromyalgia, MS, Chronic Fatigue, Rheumatoid Arthritis etc.) or knows someone who does please be sure to read this. It will help you to better understand and for those who are experiencing it, you may now have the words to explain to family, friends, co-workers and even help yourself to put things into perspective. I cried for almost an hour after reading this. I hope you find as much value in this as I do. With love and understanding www.butyoudontlooksick.com/the_spoon_theory
In other news:
I saw my family doctor - Dr. B today for the first time since my fibromyalgia diagnosis by the specialist he sent me to Dr.M. He is pleased to hear that they are continuing to look at Lupus and Rheumatoid Arthritis as be believes I could possibly have both and wants them ruled out. They are both from the Arthritis Family as is the Fibromyalgia. I am not liking the 25mg of Amitriptyline Dr.M prescribed last week but Dr.B is really wanting me to be able to tolerate it. He has told me to cut the pill in half and to take it at dinner time vs. bedtime so that I am not hungover in the morning. He wants me to do that for one week and then to add 25mg of Lyrica at 9pm. These medications are to assist with restorative sleep and to manage chronic pain (their original use was to treat chronic depression but those doses are much higher starting at 100mg) and should get rid of the insomnia. There is a third medication Cymbalta that he will look at adding when I see him again in three weeks. He was at a symposium with a Fibromyalgia Doctor from Lavalle, Quebec just a few weeks ago. This doctor claims that Amitriptyline, Lyrica and Cymbalta along with an exercise program (20 minutes of walking or stationary bike daily) for 3 years will CURE Fibromyalgia in 95% of patients. He is the only Doctor who believes there is a cure and claims of 95% success rate in curing Fibromyalgia. As my doctor said there is nothing to lose by trying.
He also increased my thyroid medication to 100mcg's and changed my pain medication to allow me to manage my own dose as needed within a higher daily range. The pain has not been managed at all in the past few weeks at my current dose/range. When the pain is this bad you cannot think of anything other than the pain and thinking is a strong word considering the brain fog that goes with it. Everything you do seems to make it worse. You cannot do anything including sleep when the pain is this bad. I have never imagined that kind of pain existed. When the pain medication is working, it doesn't get rid of the pain rather it puts it on the back burner. It is always there but not in the forefront so that it allows you to be able to think and focus on other things. It is difficult to explain. I can't believe it is almost 8 months living like this. At least I am beginning to get some answers and to understand what is happening to my body and why I have such intense pain from head to toe. I have not had a single pain free day in all of that time. If Fibromyalgia turns out to not be curable then I will not see a pain free day again in this lifetime. That is a sobering thought. I have to believe that there will be a cure if not today then within my lifetime. I keep reminding myself when I feel overwhelmed like this that attitude is more than half the battle. Staying positive really helps!
Wishing for sleep before 3am tonight. Given the way I feel right now it might just happen :) I am tired of being exhausted, not being able to sleep until the wee hours of the morning and then waking up just as exhausted if not more than when I went to bed the night before.
Have a good night everyone! Here is to sleepy nights and rested mornings.
© 2011 Rhonda
In other news:
I saw my family doctor - Dr. B today for the first time since my fibromyalgia diagnosis by the specialist he sent me to Dr.M. He is pleased to hear that they are continuing to look at Lupus and Rheumatoid Arthritis as be believes I could possibly have both and wants them ruled out. They are both from the Arthritis Family as is the Fibromyalgia. I am not liking the 25mg of Amitriptyline Dr.M prescribed last week but Dr.B is really wanting me to be able to tolerate it. He has told me to cut the pill in half and to take it at dinner time vs. bedtime so that I am not hungover in the morning. He wants me to do that for one week and then to add 25mg of Lyrica at 9pm. These medications are to assist with restorative sleep and to manage chronic pain (their original use was to treat chronic depression but those doses are much higher starting at 100mg) and should get rid of the insomnia. There is a third medication Cymbalta that he will look at adding when I see him again in three weeks. He was at a symposium with a Fibromyalgia Doctor from Lavalle, Quebec just a few weeks ago. This doctor claims that Amitriptyline, Lyrica and Cymbalta along with an exercise program (20 minutes of walking or stationary bike daily) for 3 years will CURE Fibromyalgia in 95% of patients. He is the only Doctor who believes there is a cure and claims of 95% success rate in curing Fibromyalgia. As my doctor said there is nothing to lose by trying.
He also increased my thyroid medication to 100mcg's and changed my pain medication to allow me to manage my own dose as needed within a higher daily range. The pain has not been managed at all in the past few weeks at my current dose/range. When the pain is this bad you cannot think of anything other than the pain and thinking is a strong word considering the brain fog that goes with it. Everything you do seems to make it worse. You cannot do anything including sleep when the pain is this bad. I have never imagined that kind of pain existed. When the pain medication is working, it doesn't get rid of the pain rather it puts it on the back burner. It is always there but not in the forefront so that it allows you to be able to think and focus on other things. It is difficult to explain. I can't believe it is almost 8 months living like this. At least I am beginning to get some answers and to understand what is happening to my body and why I have such intense pain from head to toe. I have not had a single pain free day in all of that time. If Fibromyalgia turns out to not be curable then I will not see a pain free day again in this lifetime. That is a sobering thought. I have to believe that there will be a cure if not today then within my lifetime. I keep reminding myself when I feel overwhelmed like this that attitude is more than half the battle. Staying positive really helps!
Wishing for sleep before 3am tonight. Given the way I feel right now it might just happen :) I am tired of being exhausted, not being able to sleep until the wee hours of the morning and then waking up just as exhausted if not more than when I went to bed the night before.
Have a good night everyone! Here is to sleepy nights and rested mornings.
© 2011 Rhonda
Saturday, July 23, 2011
A Life Turned Upside Down
Welcome to my blog!
My name is Rhonda and in January 2011 I went from being a happy and healthy woman to having my whole world turned upside down. I woke one day in mid January feeling like perhaps I was coming down with the flu. I hurt from head to toe, was nauseated and was oh so very tired. In the days that followed the pain became increasingly worse. I didn't think it was possible but I was wrong! Over the next three weeks I would develop symptoms that included: extreme muscle weakness, chronic fatigue, joint pain (at which point I learned just how many joints we have in our bodies...and how many I did not know existed),hip and back pain, numbness and tingling in all extremities, strange sensations on my skin, tingling on my face and head, balance issues, memory issues, brain fog and every once in a while my right leg would refuse to move (this can last anywhere from 20 minutes to 36 hours)! I was lucky enough to have the owner of the company I work for suggest that I work from home with flex hours!! Thank God for small favours! My Dr. was baffled.
He sent me to a Rheumatologist who ruled out Rheumatoid Arthritis and Lupus via one blood test. He suggested that I head to a Neurologist to rule out MS. I have had more tests than you can imagine: blood tests, MRI's (x3), CT Scans (x2), Nerve Conduction Study, Evoked Potential Testing, Ultrasounds, Thyroid Uptake Scans and X-Rays just to name a few. Thank goodness I live in Canada where we have access to all of these Dr's and tests without cost.
After all of that we have learned that I have 2 auto-immune diseases: Hashimoto's Disease and Graves Disease (which together are called Hashitoxicosis). My family Dr. thinks this is a side issue and not responsible for all of the issues I have. The Neurologist does feel that while I have MS symptoms it is not MS as the presentation was all wrong. I am still scheduled to see the MS Clinic (it was a 6month wait) in August. In the meantime the Hashitoxicosis has put Lupus back on the table (30% higher occurrence in people with Hashimoto's) and my Family Dr. reviewed my tests and said that it could not be ruled out by one blood test done at the very on-set of my symptoms. I head to a new Rheumatologist next week, he specializes in Lupus. It has been a very LONG 7 months and we still aren't sure what is going on with me!
We are having one of the hottest summers in memory and the heat exacerbates my symptoms. Everything is worse. Less than 5 minutes in the heat and humidity result in: my legs feel like I am walking in mud up to my thighs, I become nauseated, exhaustion sets in, poor balance and once I am back inside (where the central air conditioning is humming madly away) it can take hours to go back to how I was before I went outside.
The hardest part other than the constant pain and tiredness is watching the impact that this has on my family. Not being able to participate in my children's lives the way always have. The way I long to. Often landing in bed at night before even they have gone to bed (the youngest ones are only 8 and 9). I am blessed to have such a wonderfully supportive husband. While I know I have no control over what is happening I still feel guilty at how our lives have changed. No end in sight....ugh
I spend a lot of time in bed. Either sleeping or just stretching out to take the pressure off my back and hips. I have read and written up a storm, it keeps me sane! I am hopeful that this blog will allow me to become a better writer, inspire me to finish a novel I am working on and of course allow me to manage my stress in a positive manner by writing it out, rather than the endless thoughts swirling in my head.
Make it a great day!
© 2011 Rhonda
My name is Rhonda and in January 2011 I went from being a happy and healthy woman to having my whole world turned upside down. I woke one day in mid January feeling like perhaps I was coming down with the flu. I hurt from head to toe, was nauseated and was oh so very tired. In the days that followed the pain became increasingly worse. I didn't think it was possible but I was wrong! Over the next three weeks I would develop symptoms that included: extreme muscle weakness, chronic fatigue, joint pain (at which point I learned just how many joints we have in our bodies...and how many I did not know existed),hip and back pain, numbness and tingling in all extremities, strange sensations on my skin, tingling on my face and head, balance issues, memory issues, brain fog and every once in a while my right leg would refuse to move (this can last anywhere from 20 minutes to 36 hours)! I was lucky enough to have the owner of the company I work for suggest that I work from home with flex hours!! Thank God for small favours! My Dr. was baffled.
He sent me to a Rheumatologist who ruled out Rheumatoid Arthritis and Lupus via one blood test. He suggested that I head to a Neurologist to rule out MS. I have had more tests than you can imagine: blood tests, MRI's (x3), CT Scans (x2), Nerve Conduction Study, Evoked Potential Testing, Ultrasounds, Thyroid Uptake Scans and X-Rays just to name a few. Thank goodness I live in Canada where we have access to all of these Dr's and tests without cost.
After all of that we have learned that I have 2 auto-immune diseases: Hashimoto's Disease and Graves Disease (which together are called Hashitoxicosis). My family Dr. thinks this is a side issue and not responsible for all of the issues I have. The Neurologist does feel that while I have MS symptoms it is not MS as the presentation was all wrong. I am still scheduled to see the MS Clinic (it was a 6month wait) in August. In the meantime the Hashitoxicosis has put Lupus back on the table (30% higher occurrence in people with Hashimoto's) and my Family Dr. reviewed my tests and said that it could not be ruled out by one blood test done at the very on-set of my symptoms. I head to a new Rheumatologist next week, he specializes in Lupus. It has been a very LONG 7 months and we still aren't sure what is going on with me!
We are having one of the hottest summers in memory and the heat exacerbates my symptoms. Everything is worse. Less than 5 minutes in the heat and humidity result in: my legs feel like I am walking in mud up to my thighs, I become nauseated, exhaustion sets in, poor balance and once I am back inside (where the central air conditioning is humming madly away) it can take hours to go back to how I was before I went outside.
The hardest part other than the constant pain and tiredness is watching the impact that this has on my family. Not being able to participate in my children's lives the way always have. The way I long to. Often landing in bed at night before even they have gone to bed (the youngest ones are only 8 and 9). I am blessed to have such a wonderfully supportive husband. While I know I have no control over what is happening I still feel guilty at how our lives have changed. No end in sight....ugh
I spend a lot of time in bed. Either sleeping or just stretching out to take the pressure off my back and hips. I have read and written up a storm, it keeps me sane! I am hopeful that this blog will allow me to become a better writer, inspire me to finish a novel I am working on and of course allow me to manage my stress in a positive manner by writing it out, rather than the endless thoughts swirling in my head.
Make it a great day!
© 2011 Rhonda
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