Just in case anyone is reading this...I have had a hard spring and summer this year, and am just starting to feel human again. The main stressor was being made to move when I was in one of the worst flares I've had with FMS and CFS. But now things are so much better. I am getting off two medications; one is Clonazepam (or Klonopin) which is a benzodiazapene. I moved to Utah June 2008 and was on 1 mg TID (3x day), and now I am on a "weaning" dose of .5 mg (1/2 mg) BID (or 2 x day). I am off morphine completely and on a baby weaning dose of Suboxone 2 mg BID, and I have been doing 1 mg PO per day off and on. I had to go on a medication called Requip (not sure of spelling - on generic) to stop the restless extremeties (legs and arms jerking) which the morphine and clonazepam was keeping at bay. So it's all good. The only thing is, I am feeling all kinds of things - 13 years worth of feelings that were blocked with pain medication. The truly AMAZING part of all of this is the FACT that my pain is so much better off the drugs. I had wondered about how much of my pain was rebound pain. I used to wake in the morning and hurt so bad I would just cry and cry until meds kicked in. Now I don't have that problem. The extra pain receptors that are developed when a person is taking an opiate/narcotic medication regularly, slowly die off as the med is decreased. I only learned about this pheonomena a few months ago. As my PCP was explaining to me how pain meds for acute pain are fine. But for chronic pain, he explained this: Meds block pain receptors for a short time (few weeks) and then the brain develops NEW pain receptors. Then you need a higher dose. What had been explained to me previously as simply "tolerance", is actually the brain's normal reaction when a pain receptor is blocked. So you need more, and more, and more, depending on how long terms the use of these meds turns out to be for you. For me it was off and on for 14 years- starting actually in February, 1996, continuing until I moved to Utah. I had been on Suboxone once, but Medicare D Pharaceutical coverage wouldn't continue to cover it. Finally I got it back, but by then I had been on opiates again for 3 months. The first pain center didn't bother to wean me off. The new pain center is great. They know my goal is to be narcotic/benzo-free, and are helping me with a schedule of reduction that is incredibly long, slow, and just a small reduction each month so I experience no withdrawal. I was on 8mg suboxone BID previously. Prior to going back on Suboxone in January of this year, I was on MSContin, 60 mg BID, then went to MSIR 30 mg TID. Tried to start the weaning off the Morphine, but it was quite difficult. And at that time I did not have the doc who understood my leg and arms jerking. Turns out it took a Psychiatrist who is extrememly knowledgeable about meds to help me out. He's the one that put me on the Requip, and explained that I may or may not suffer from Restless Leg Syndrome, because Lexapro - an SSRI that I take- can cause my symptoms. UGGHHH! I have learned, re-learned, and learned all over again over the past 14 years. What I was told years ago is no longer true; it turns out there are many more neurotransmitters than anyone knew about until very recently. I thought that my knowledge was sound! Turns out much of what I used to know has been turned on its head.
I am starting with a new Psychologist. She practices something called "Zyto Evox" thought changing. It has it's roots in Neuro-Linguistic Programming (NLP) that I never studied. My psych masters program was very psychodynamic, which is a way of saying almost Psycho-analytic, but not extremely so. Anyway, I will post some links for my readers who would like to learn more, and then I am posting on Reflex Sympathetic Dystrophy (RSD). If you are reading, I hope you will contact me concerning any topics you would like me to research and post here.
Thanks for reading!
Kathie
Saturday, September 18, 2010
Tuesday, April 13, 2010
Service Dogs and Companion Service Dogs
Assistance and Comfort for those with Chronic Illness
For those who are mostly homebound, and often bedbound, it can be a tremendous benefit to get a Service Dog; that is, if you like dogs to begin with. There are a couple of ways to go on this. One is to get a dog specifically trained to perform tasks that are difficult for you to do on your own. They can be trained to do amazing things! For example, if you have pain upon bending down they can be trained to pick up items on the floor. Items you need can be arranged such that a trained dog can retrieve them for you (i.e.,leaving water bottles out where she can pick one up instead of leaving it in the fridge). You get the idea. There are also dogs trained for a specific issue. For example; here is a link that is specifically for balance for those with MS.
About Balance Dogs for MS patients
This is a very specific topic, but one critical for MS Patients.
If you suffer from Fibromyalgia, or a milder form of any illness where you are able to do most tasks of daily living, you may still want to have a dog for comfort and companionship. These dogs need to be trained well by their owners on basic obedience (if you don’t think you know enough to do this, go to Petsmart, or somewhere for obedience training). In addition, they can be trained to do some tasks for you. The difference is they aren’t certified as Service Dogs unless the dog is trained by someone licensed to do this. But a Companion Dog, or Companion Service Dog (terms usually interchangeable), needs to be trained by the owner. Having a dog certified as a Companion Dog you , enables you to take it with you anywhere - either for companionship or to ease anxiety. If this sounds like a good fit –and you want a dog, getting a Companion [Service] Dog might be the way to go. This is what I have done. It enabled me to take two 20 lb dogs on a 2 and a half hour flight, without kennels! These are considered "snub-nosed" dogs. These are breeds that cannot ride in the cargo hold due to potential for breathing problems. It was pretty funny - I had two tranquilized dogs,limp dogs, with me on a relatively long flight. They put me in the very front with no one in front of me.
I have two Lhasa Apsos; Tobe is 10 and Bo is 3 years old. I would not necessarily recommend getting a high maintenance dog like this (long hair, high maintenance grooming). You have to consider the breed's maintenance requirements in all areas, not just grooming. I'm willing to pay for grooming, with a trade off; my boys are lap dogs, and very high on the cuddle factor. ;) The good news is Lhasas are considered "hypo-allergenic": some difference, or lack of, typical dander. Plus, Lhasa Apsos don't shed. In addition, they have few, if any, hereditary health problems. As Tobe started to get older I knew I wanted a mature trained dog with me already when he goes. This gives you an idea of what factors need to be weighed and it's a very personal choice since we all have different needs. It is very unusual to have two Companion Dogs. Personally, I have found it to be a wonderful experience. They are so funny together (laughter eases pain), and each is good for the other, which is nice to watch. They have such a close relationship (they're both boys -no one thought it would work!), and I don’t feel guilty if I haven’t played with them every day . They play with each other. Then there is the obvious benefit: dogs love you unconditionally. Mine lick my face when I cry. And whether Im gone 10 minutes or 5 hours, the welcome home response is the same!
I personally do not recommend adopting a dog. If it is a puppy (under 14 weeks) and a full-bred, or two-mixed bred dog, like a Schnauzer-doodle, you are probably not gambling. Just research both breeds for health and maintenance issues. The reason is you will have no way of knowing what kind of health, allergy, etc., problems you are getting into. I felt that grooming would be cheaper in the long run than large vet bills. So far, I have been correct. But breed choice, adoption or not, these are individual decisions. For a Service Dog, the breed is chosen, and is usually either a Golden Retriever or a German Shephard.
Another category of service animal is the Psychiatric Service Dog category. Don’t led the label bother you; this is for people who have severe depression, bipolar disorder, etc., who may , or may not, concomitantly have a chronic physical illness. I haven't met that many people in "our" situation that dont suffer from some level of depression on occasion.
For Psychiatric Companion Dogs - Here is a good place to start:
Psychiatric Service Dogs
Training for Service/Companion Dogs
Service and Companion Dogs - Resource Site
Great source for basic information; it is strictly a "link site".
Canine Companions for Independence
The Law – ADA and DOJ – and Certification for Companion Service Dogs
This is a site where you can not only learn about Service Dogs, but you may also get your self-trained Companion Dog certified here. I found this to be a great source of "back-up"; when renting an apartment, dealing with housing, or riding a bus. If you are questioned or doubted, you can just pull out the part of the ADA that shows your rights, or the Fair Housing Act through DOJ. The latter is quite explicit about our rights to have service dogs.
For those of you who are ill but not on disability you would need a physician to make a remark in the letter you obtain. Don't be afraid to make a list of things that you find you need in your letters for certication. They are usually relieved when you've already written the letter for them!
I hope this is useful information. I didn't know for years into being on disability that I could have my "guys" certified without going through formal training.
Questions? Comments? Feel free to use the comment feature of this blog.
Have a great day!
Kathie Turner
Your Health Coach
Multiple Sclerosis: Information and Support Resources
I have only met two women with MS. One I barely met, and didn't understand anything about what was going on. I just knew she was in a wheelchair. Although I have educated myself since that time many years ago, my ignorance brings to mind one of my favorite quotes :
For this particular post I am including some good resource sites for you to check out about MS, and hopefully you will learn something new. I think it's unfortunate that so many of us with chronic illness can't coordinate with each other on a local and national level, for support, advocacy, better care - which for me is often a matter of the doctors being educated on all aspects of having a chronic illness.* I will provide some good resource links, and talk about each one. Please use the comment option to give feedback, or just to comment. ;)
REFERENCES ON MS
Allsup: Disability for MS
If you have recently been diagnosed with MS (or any illness that leaves you unable to work), this is an excellent resource. It has been many years, but I received my SSDI approval a mere 6 weeks after completing the phone interview with this company. They require a percentage of your retro-active pay/benefit, but I have never come across anyone who was approved as quickly as I was. Keep in mind, however, that various Physicians, Psychiatrist, etc., documentation is critical. The more specific, the more they are willing to share, the better.
Multiple Sclerosis Foundation
This is an excellent site! Great resource for basic information, advocacy, latest research – whatever you are looking for is probably here! Not to say that the other sites listed aren’t worthwhile, of course.
NIH on Multiple Sclerosis
A wealth of information is available from the National Institutes of Health(NIH), a government funded agency conducting research on all sorts of health concerns, is involved in the dissemination of valuable and current information.
Multiple Sclerosis Association of America
The MSAA is fantastic. Recent updates on current research, support, advocacy, information, printable pamphlets – if it isn’t here, they will probably have a link to it.
Resources - MS from About.com
I find About.com to be a useful resource on a wide variety of subjects. This is a good resource, and they, like NIH, are usually current.
I hope you find this useful. Please feel free to use the comment feature to let me know if you would like more information, or different info on any subject I post.
Have a great day!
Kathie
*e.g., why appointments are frequently cancelled due to flares; not knowing when a flare will strike; the overwhelming depression some feel with chronic illness-isolation, lack of family support, particularly if a physician cannot be found who knows how to treat the condition, and do so with compassion.
Information and Knowledge are the most powerful allies we have against any chronic illness.
For this particular post I am including some good resource sites for you to check out about MS, and hopefully you will learn something new. I think it's unfortunate that so many of us with chronic illness can't coordinate with each other on a local and national level, for support, advocacy, better care - which for me is often a matter of the doctors being educated on all aspects of having a chronic illness.* I will provide some good resource links, and talk about each one. Please use the comment option to give feedback, or just to comment. ;)
Allsup: Disability for MS
If you have recently been diagnosed with MS (or any illness that leaves you unable to work), this is an excellent resource. It has been many years, but I received my SSDI approval a mere 6 weeks after completing the phone interview with this company. They require a percentage of your retro-active pay/benefit, but I have never come across anyone who was approved as quickly as I was. Keep in mind, however, that various Physicians, Psychiatrist, etc., documentation is critical. The more specific, the more they are willing to share, the better.
Multiple Sclerosis Foundation
This is an excellent site! Great resource for basic information, advocacy, latest research – whatever you are looking for is probably here! Not to say that the other sites listed aren’t worthwhile, of course.
NIH on Multiple Sclerosis
A wealth of information is available from the National Institutes of Health(NIH), a government funded agency conducting research on all sorts of health concerns, is involved in the dissemination of valuable and current information.
Multiple Sclerosis Association of America
The MSAA is fantastic. Recent updates on current research, support, advocacy, information, printable pamphlets – if it isn’t here, they will probably have a link to it.
Resources - MS from About.com
I find About.com to be a useful resource on a wide variety of subjects. This is a good resource, and they, like NIH, are usually current.
I hope you find this useful. Please feel free to use the comment feature to let me know if you would like more information, or different info on any subject I post.
Have a great day!
Kathie
*e.g., why appointments are frequently cancelled due to flares; not knowing when a flare will strike; the overwhelming depression some feel with chronic illness-isolation, lack of family support, particularly if a physician cannot be found who knows how to treat the condition, and do so with compassion.
Sunday, January 31, 2010
Resource for CFS
The Center for Disease Control in Atlanta, GA has done extensive research into one of the "invisible" diseases; Chronic Fatigue Syndrome (CFS), which many believe to be interchangeable with Fibromyalgia (FMS). The information at the link below is excellent, particularly if you are being met with skepticism by a new doc as I have been recently. Having been diagnosed in another state, I am finding that docs here "don't believe" in these diagnoses! Imagine my surprise, when FMS has three prescription medications now approved for it's treatment by the FDA! (Lyrica,Cymbalta, and Savella)
Questions? Comments? Use the comment feature. I welcome your feedback, and hope to make this useful for everyone.
Here is the link: CDC Tooklit: CFS
Questions? Comments? Use the comment feature. I welcome your feedback, and hope to make this useful for everyone.
Here is the link: CDC Tooklit: CFS
Wednesday, May 27, 2009
Introductory Post
Hello, fellow survivors of "invisible" (or visible) illness...Lupus, Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis...if I've missed yours, its only due to the numerous possibilities. With this blog, I plan to post articles that I find of interest, but I will need your input to determine if they are interesting to YOU. If after getting a sense of who I am, how I think, you wish to inquire about coaching, please feel free. Coaching is on a "donation" only basis - no set fees, no sliding scale. I conduct sessions by telephone, preferably after receiving a recent photo. My background lends well to this endeavor. I was licensed in Oklahoma for many years before I became ill.
What is Coaching? How is it different from therapy? Well, many of you may already know, but for those that are curious about this I will outline the differences. Coaching is for goal setting; a coach's job is to assist you in setting goals, and then "hold your feet to the fire" to make sure you follow through. I think of it as a personal cheerleader in a sense. Therapy, on the other hand, can be many things, but it is initiated due to a problem. Either depression, anxiety, or in the case of family therapy, a teenager (sometimes younger child) usually acts out, but most often this person is "carrying the symptom" for a dysfunctional family. And, btw, there is no such thing as a completely functional family - just a position on a continuum of less dysfunctional to more dysfunctional.
I have gone back to school online through Capella University. I am working on a doctorate degree in Psychology, with a "health focus". I had to withdraw this quarter due to illness, but I will keep plugging in summer quarter if I am well enough by then. A health psychologist can work in a variety of settings...in a hospital or clinic...in pain clinic to help those like us deal with chronic pain...even doing an initial assessment prior to being seen by a physician. This is becoming more and more popular, and the class offerings are interesting; Chronic Illness (I may apply to teach this one!), Psychopharmaracology (the study of drugs related to improving mental health)...and many others. Coaching is part of what I would have in my "med kit" as one tool I could use. But Cognitive Behavioral Therapy is probably the primary one.
One thing I hope to do with this blog is keep you updated on the latest research. Many of you may know this already, but a 3rd drug has been approved by the FDA for the treatment of Fibromyalgia. The first was Lyrica (gave me horrid side effects), the second one was Cymbalta - an SNRI (Seratonin and Norepinephrine Reuptake Inhibitor). The third, Savella, is another SNRI, but the trials were off the charts successful. So when this one comes out, I'm trying it. It should be out by now, I'll find out next month when I go to the pain clinic. Lyrica was originally prescribed for nerve pain, or peripheral neuropathy; Both Cymbalta and Savella are a type of anti-depressant; but Savella was approved for FMS treatment as it's primary use! It's getting harder for docs to say FMS/CFS is all in your head, or that it's depression. Interestingly, both of the SNRI's have a "depression dosage", and a "pain dosage", twice the depression dose with Cymbalta. So if you have been prescribed this drug for pain, and are taking less than 120 mg, you are not on a sufficient dosage to impact your pain.
I think I'll close the introduction. I'll watch for comments! Until the next post...find at least one positive thing in each day and focus your thoughts on it. Today I saw my daughter and grandchildren. They warm my heart so much! There were some not so great things, but focusing on my 4 beautiful grandchildren...that erases all pain and negativity, if I but focus my thoughts on them, like a meditation.
Like most of you, I have periods when I am less ill, or relatively healthy, but never have I been really well since I fell ill. I've been to
What is Coaching? How is it different from therapy? Well, many of you may already know, but for those that are curious about this I will outline the differences. Coaching is for goal setting; a coach's job is to assist you in setting goals, and then "hold your feet to the fire" to make sure you follow through. I think of it as a personal cheerleader in a sense. Therapy, on the other hand, can be many things, but it is initiated due to a problem. Either depression, anxiety, or in the case of family therapy, a teenager (sometimes younger child) usually acts out, but most often this person is "carrying the symptom" for a dysfunctional family. And, btw, there is no such thing as a completely functional family - just a position on a continuum of less dysfunctional to more dysfunctional.
I have gone back to school online through Capella University. I am working on a doctorate degree in Psychology, with a "health focus". I had to withdraw this quarter due to illness, but I will keep plugging in summer quarter if I am well enough by then. A health psychologist can work in a variety of settings...in a hospital or clinic...in pain clinic to help those like us deal with chronic pain...even doing an initial assessment prior to being seen by a physician. This is becoming more and more popular, and the class offerings are interesting; Chronic Illness (I may apply to teach this one!), Psychopharmaracology (the study of drugs related to improving mental health)...and many others. Coaching is part of what I would have in my "med kit" as one tool I could use. But Cognitive Behavioral Therapy is probably the primary one.
One thing I hope to do with this blog is keep you updated on the latest research. Many of you may know this already, but a 3rd drug has been approved by the FDA for the treatment of Fibromyalgia. The first was Lyrica (gave me horrid side effects), the second one was Cymbalta - an SNRI (Seratonin and Norepinephrine Reuptake Inhibitor). The third, Savella, is another SNRI, but the trials were off the charts successful. So when this one comes out, I'm trying it. It should be out by now, I'll find out next month when I go to the pain clinic. Lyrica was originally prescribed for nerve pain, or peripheral neuropathy; Both Cymbalta and Savella are a type of anti-depressant; but Savella was approved for FMS treatment as it's primary use! It's getting harder for docs to say FMS/CFS is all in your head, or that it's depression. Interestingly, both of the SNRI's have a "depression dosage", and a "pain dosage", twice the depression dose with Cymbalta. So if you have been prescribed this drug for pain, and are taking less than 120 mg, you are not on a sufficient dosage to impact your pain.
I think I'll close the introduction. I'll watch for comments! Until the next post...find at least one positive thing in each day and focus your thoughts on it. Today I saw my daughter and grandchildren. They warm my heart so much! There were some not so great things, but focusing on my 4 beautiful grandchildren...that erases all pain and negativity, if I but focus my thoughts on them, like a meditation.
Like most of you, I have periods when I am less ill, or relatively healthy, but never have I been really well since I fell ill. I've been to
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