I am still slowly reading Henry Scammell's book The New Arthritis Breakthrough. I say slowly because fatigue zaps my ability to focus. I love this book, and it irritates me to no end to try and read the same sentence, over and over, because my mind is in such a fog. However, chapters 5 &6 blew me and my husband away. It wasn't that our story was identical, but the testimonial there is so familiar. I would manage to work my full day, but by the time I was home, my husband would have to get me out of the car. It was so frustrating. I was a young woman in 1999, yet the 30 minute ride home would prove eventually to be too much. From migraines that became so bad I kept a large coffee cup in the front seat, so I could throw up on the drive home, to fatigue that would be so strong I literally had to fight to stay awake. Several times I'd doze a little only to awaken to the sound of loose gravel. It was so scary. Then getting home, to find my body had frozen in an old lady stiffness. I didn't have the strength to lift my legs, much less my body out of the car. My husband would come and help me to bed, where I would eat dinner and soon be asleep. It was frustrating to my husband, but worse for me was my thoughts of how awful it must be for my kids to see, and watch me cry in pain. Or to hear them ask Teddy, my husband, why I was always in bed.
I think reading the testimonial really helped me to believe I am on the right track! She now has rare flares and has her life back. She can go shopping without it being the end of her day. I look for that day! I hope my sister gets on this protocol soon. She calls me on her way home, talking helps keep her awake. She is exactly where I was when I became disabled.
It is hard to watch, because if this protocol isn't the answer I believe it to be, she will go through all that I have, and I don't wish it on my worst enemy, much less my best friend! I pray this is the answer for us both. She has Lupus and this AP is also doing wonders for those with Lupus, RA, Scleroderma and Fibromyalgia and more. Again, if you find yourself losing hope, go buy this book and visit the Road Back Foundation! It isn't a fast turn around, so why wait? Grab the brass ring and run with it...I'll meet you at the finish line!
Saturday, March 22, 2008
Saturday, March 15, 2008
So much for everyday posting!
My intent was to post daily, but since I am so fatigued and in so much pain, it'd be like portraying myself to be negative in this treatment. I am anything but! I am looking forward to this being the answer. In the mean time,it is supposed to make me feel worse, so I am not discouraged when I tell you, I have never been so tired.
I wonder how it looks from the outside looking in, when a perfectly normal (quit laughing) looking person suddenly begins limping in pain, and a few minutes later be OK. It is what this disease does, and while it looks completely insane, I have talked to many with the exact same symptoms. It is like your body is a foreign entity, and it will defy you at any minute and when you least expect it. You hold a cup of coffee, trying to seem intelligent (which in itself gets harder to do because your brain synapses are not synapping) and your hand just lets go of its grip. It is crazy! Now your lap is filled with the hot coffee, and your family is looking at you like you flipped your lid. Maybe you have. Forget doing dishes...I think someone is stealing my cups and glasses, but I may have just dropped them all. I know the first thing I hope that this AP changes is the dead fog my brain is in. I want so desperately to know what you are saying, yet no matter how hard I listen it is just not getting through. I have to read the same sentence over and over, to understand. I like to think I am a fairly intelligent person and yet I will somehow switch my words around and sound like a complete idiot. Like " let's slip out the back, Jack" which is what I meant when I told my husband "let's slip out the Jack, Back"! And I will end today's rant with my sister's funniest brain fog moment: trying to sound like she knows what she is talking about, and proud she got through her point without a fog moment, ended her speech to her co-workers with " and you can put that in your smoke and pipe it!" Oh yes! It is enough to bring tears of frustration and laughter all at once. And with that I say " Please let this AP work quickly!"
I wonder how it looks from the outside looking in, when a perfectly normal (quit laughing) looking person suddenly begins limping in pain, and a few minutes later be OK. It is what this disease does, and while it looks completely insane, I have talked to many with the exact same symptoms. It is like your body is a foreign entity, and it will defy you at any minute and when you least expect it. You hold a cup of coffee, trying to seem intelligent (which in itself gets harder to do because your brain synapses are not synapping) and your hand just lets go of its grip. It is crazy! Now your lap is filled with the hot coffee, and your family is looking at you like you flipped your lid. Maybe you have. Forget doing dishes...I think someone is stealing my cups and glasses, but I may have just dropped them all. I know the first thing I hope that this AP changes is the dead fog my brain is in. I want so desperately to know what you are saying, yet no matter how hard I listen it is just not getting through. I have to read the same sentence over and over, to understand. I like to think I am a fairly intelligent person and yet I will somehow switch my words around and sound like a complete idiot. Like " let's slip out the back, Jack" which is what I meant when I told my husband "let's slip out the Jack, Back"! And I will end today's rant with my sister's funniest brain fog moment: trying to sound like she knows what she is talking about, and proud she got through her point without a fog moment, ended her speech to her co-workers with " and you can put that in your smoke and pipe it!" Oh yes! It is enough to bring tears of frustration and laughter all at once. And with that I say " Please let this AP work quickly!"
Friday, March 07, 2008
So tired
Today has been rough. I am so tired. It is like it is an effort to breathe. I don't know if it is the start of herx, or just the tail end of this Daniel fast, or what, but I am so very tired. My eyes are watering and I just feel like blah! Oh well, I am not going to be negative. What I am going to do is go to bed very soon.
So my pain and fatigue levels are very high today. Maybe tomorrow will be better. Good bye for now.
So my pain and fatigue levels are very high today. Maybe tomorrow will be better. Good bye for now.
Thursday, March 06, 2008
Going through changes
Well, today is the third day of my AP, officially and of course it is too soon to tell anything. I am in the worst flare of my life, and if it is true that in AP you have what they call Jarisch Herxheimer reaction, or Herx for short, then I cannot imagine getting worse before you get better, but I am certainly up to it. I mean what choice do you have? This is no way to live, so yes it is worth the effort to try.
It has been the most trying time in my life. My dad died in December. I don't know how people get over such a loss, but it has just devastated me. What am I to do now? Well first off I am getting well. I do not want to live this life God has given me, as a taker. I want to be a server, a giver a blessing, not a burden. So the goal is before me, like a carrot tied to a stick, just out of reach, but I am hungry enough to go for it. I am changing my way of thinking. I need to be positive in my goal of a healthy, happy, productive life. It will happen! Too many testimonials to lose hope. And with that I leave you to ponder your own life and if you are one of my many friends and relatives suffering the same or like problems, I ask you to consider AP. Go to the website and read for yourself. There is documentation to take to your doctor. However, if you want to wait and see, I will be your guinea pig. Why not? What have I got to lose? Pain, helplessness and fatigue. And I am so ready to lose that! Stay tuned!
It has been the most trying time in my life. My dad died in December. I don't know how people get over such a loss, but it has just devastated me. What am I to do now? Well first off I am getting well. I do not want to live this life God has given me, as a taker. I want to be a server, a giver a blessing, not a burden. So the goal is before me, like a carrot tied to a stick, just out of reach, but I am hungry enough to go for it. I am changing my way of thinking. I need to be positive in my goal of a healthy, happy, productive life. It will happen! Too many testimonials to lose hope. And with that I leave you to ponder your own life and if you are one of my many friends and relatives suffering the same or like problems, I ask you to consider AP. Go to the website and read for yourself. There is documentation to take to your doctor. However, if you want to wait and see, I will be your guinea pig. Why not? What have I got to lose? Pain, helplessness and fatigue. And I am so ready to lose that! Stay tuned!
Wednesday, March 05, 2008
The Road Back
Well, it has been some time since I have written and I have decided to blog my journey back to life. It is my firm hope, that this new approach, called Antibiotic Protocols, which from this point on I will call AP, will give me my life back.
I started yesterday.
The only way to approach my lack of control and frustration is, first and foremost to take the control back. We have got to be advocates in our own lives, and get past our defeatist attitudes. I am the biggest pessimist in the word, for I am sure the grass is always greener, the cup is definitely half empty and I am sure I am invisible in a crowd, all the while being positive that everyone is staring at that invisible girl. Does that makes sense? No. So first I must drudge past my "it'll never work" attitude and try.
I have been diagnosed to death. As a child, I always had "growing pains" and after a car accident at age 12, I have had Charley horses and spasms in my legs.
I have always had pain. In 1997 I got my sickest after the birth of my 3rd child. Pain and fatigue, stiffness, and the worst case of what I came to know as Fibro Fog, where I suddenly can't finish a thought, or replace names and words with unrelated words, and basically look like an idiot. I began to work part time and go to school, thinking that being on my feet all day as a surgical tech, might be the reason for all the pain. However after two semesters I couldn't think clearly and has spent more time asleep on the couch, than living.
So, after becoming completely disabled and useless in my own eyes, I began searching for an answer. I have been to pain specialist, physical therapy, counseling, rheumatologist, family physicians, neurologist, endocrinologist, ear nose and throat specialist and chiropractors. This has occurred over 11 years. One problem is that I am the rare person, that despite negative tests, definitely has a real physical problem. No doctor denied that something is wrong, but they didn't know what. Now diagnosis is easy to come by, as I have been told I have fibromyalgia, diabetes, osteoarthritis, plantar fasciitis, heel spurs, Degenerative Disc Disease, Hashimoto's Thyroiditis, Goiter, Mixed Connective Tissue Disease, undifferentiated, mild neuropathy, tendonitis, carpal tunnel, restless leg syndrome, and rheumatoid arthritis.
At this point I now have run the gamut of pain pills that don't work, new vitamins that promise to be the cure all, physical therapy and stretching, and drugs like methotrexate, which is just a scary drug to take. After 3-4 months of Lyrica, Requip, and Methotrexate, I was taken off all three because I couldn't tell a difference. At this point the Rheumatologist, that I drove and hour and a half to see, spent 15 minutes or so with me and said, "well that didn't work, don't take it anymore, we'll MRI your wrist again in 6 months to see if it still shows you have RA. However, I think you have Fibromyalgia".
Now the frustrating part of that is,I came in believing he'd discover the source of my pain, and he gave me Lyrica is for Fibromyalgia. Now, he is back to the original diagnosis, but takes away the only medication that is supposed to help Fibro. I was up to 450 mg and could feel no difference, so I wasn't upset with the medication being taken away, I was frustrated that we had back tracked all the way to my original dx. It felt like a slap in the face. I left crying, with a script for physical therapy, and more frustration.
It was at this point that I gave up. It was also at this point that I found a website describing what I believed might explain me- RUPUS. Rupus is a name given to people with aspects of both Lupus and Rheumatoid Arthritis, but overlapping test for both, but no enough for either to be specifically diagnosed. As a joke, I sent my mom the link to RUPUS. I told her, "look, I don't need doctors, I diagnosed myself!" Of course, I was joking, but she read some of the side info and low and behold we found the Road Back Foundation.
I am reading, and this is a book all chronic pain sufferers should definitely read, " The New Arthritis Breakthrough, The Only Medical Therapy Clinically Proven to Produce Long-term Improvement and Remission" by Henry Scammell. The title is a mouthful, but it is a great and enlightening read.
I will continue my blogs on my AP treatments and success or failure. I promise I will be honest, and I think by now you can tell I am not one to fall for the latest, greatest treatment. I'll try anything to get my life back, so if this is the true breakthrough it appears to be, I will scream it from the rooftop.
And so the first day of the rest of my life began yesterday. For those of you suffering, what have you got to lose? I for one am ready to live again and I sick and tired of being sick and tired.
I started yesterday.
The only way to approach my lack of control and frustration is, first and foremost to take the control back. We have got to be advocates in our own lives, and get past our defeatist attitudes. I am the biggest pessimist in the word, for I am sure the grass is always greener, the cup is definitely half empty and I am sure I am invisible in a crowd, all the while being positive that everyone is staring at that invisible girl. Does that makes sense? No. So first I must drudge past my "it'll never work" attitude and try.
I have been diagnosed to death. As a child, I always had "growing pains" and after a car accident at age 12, I have had Charley horses and spasms in my legs.
I have always had pain. In 1997 I got my sickest after the birth of my 3rd child. Pain and fatigue, stiffness, and the worst case of what I came to know as Fibro Fog, where I suddenly can't finish a thought, or replace names and words with unrelated words, and basically look like an idiot. I began to work part time and go to school, thinking that being on my feet all day as a surgical tech, might be the reason for all the pain. However after two semesters I couldn't think clearly and has spent more time asleep on the couch, than living.
So, after becoming completely disabled and useless in my own eyes, I began searching for an answer. I have been to pain specialist, physical therapy, counseling, rheumatologist, family physicians, neurologist, endocrinologist, ear nose and throat specialist and chiropractors. This has occurred over 11 years. One problem is that I am the rare person, that despite negative tests, definitely has a real physical problem. No doctor denied that something is wrong, but they didn't know what. Now diagnosis is easy to come by, as I have been told I have fibromyalgia, diabetes, osteoarthritis, plantar fasciitis, heel spurs, Degenerative Disc Disease, Hashimoto's Thyroiditis, Goiter, Mixed Connective Tissue Disease, undifferentiated, mild neuropathy, tendonitis, carpal tunnel, restless leg syndrome, and rheumatoid arthritis.
At this point I now have run the gamut of pain pills that don't work, new vitamins that promise to be the cure all, physical therapy and stretching, and drugs like methotrexate, which is just a scary drug to take. After 3-4 months of Lyrica, Requip, and Methotrexate, I was taken off all three because I couldn't tell a difference. At this point the Rheumatologist, that I drove and hour and a half to see, spent 15 minutes or so with me and said, "well that didn't work, don't take it anymore, we'll MRI your wrist again in 6 months to see if it still shows you have RA. However, I think you have Fibromyalgia".
Now the frustrating part of that is,I came in believing he'd discover the source of my pain, and he gave me Lyrica is for Fibromyalgia. Now, he is back to the original diagnosis, but takes away the only medication that is supposed to help Fibro. I was up to 450 mg and could feel no difference, so I wasn't upset with the medication being taken away, I was frustrated that we had back tracked all the way to my original dx. It felt like a slap in the face. I left crying, with a script for physical therapy, and more frustration.
It was at this point that I gave up. It was also at this point that I found a website describing what I believed might explain me- RUPUS. Rupus is a name given to people with aspects of both Lupus and Rheumatoid Arthritis, but overlapping test for both, but no enough for either to be specifically diagnosed. As a joke, I sent my mom the link to RUPUS. I told her, "look, I don't need doctors, I diagnosed myself!" Of course, I was joking, but she read some of the side info and low and behold we found the Road Back Foundation.
I am reading, and this is a book all chronic pain sufferers should definitely read, " The New Arthritis Breakthrough, The Only Medical Therapy Clinically Proven to Produce Long-term Improvement and Remission" by Henry Scammell. The title is a mouthful, but it is a great and enlightening read.
I will continue my blogs on my AP treatments and success or failure. I promise I will be honest, and I think by now you can tell I am not one to fall for the latest, greatest treatment. I'll try anything to get my life back, so if this is the true breakthrough it appears to be, I will scream it from the rooftop.
And so the first day of the rest of my life began yesterday. For those of you suffering, what have you got to lose? I for one am ready to live again and I sick and tired of being sick and tired.
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