Hello All:
I hope everyone is well! It has been a while since I've been around much, so I thought I'd give an update on what is going on with me.
I appear to be in full remission. Norman visits every day. Most muscle aches and pains are gone, except those earned righteously in "combat". The only neuropathy remaining is a bit in the top of my left foot, which was also damaged in a car accident.
All brain fog is gone, thank goodness. I've also gained enough weight that I've had to start watching myself so I don't outgrow my clothes, instead of struggling to maintain. I am 5'8" and have gone from 115 lb to 135 lb.
I am strictly gluten-free, lactose-free, and non-fermented soy-free. I seem to have dodged the casein bullet. I did not have the funds for Enterolab, so I had to do it by strict elimination.
As far as meds go, I take nothing for the MC (both LC & CC). However, my med regiment is rather odd, as I do take a couple of things that are contraindicated. I can't do without them, and it just goes to show that everyone is different:
Zoloft (sertraline): 50 mg*
Prilosec (omeprazole): 40mg
*Interestingly enough, as my physical health improved, I was able to get this down from 200 mg.
All hail everyone on this site who helped me get here, especially Tex. I could not have done it without you. My gratitude knows no bounds.
Just one note of caution: As I have occasionally visited the site, I have noticed a tendency to recommend people not take SSRI/SNRI drugs. While I am very aware of the documented link between MC and these drugs, sometimes the MH disorders they are treating are exponentially worse than MC. I say this as someone who suffers from both, so please take my words in the spirit in which they are offered. I did attempt to get off Zoloft, and as a result, almost ended up once in the regular hospital because of side effects from a different drug, and almost again in the mental hospital because on side effects from yet another.
On a lighter note, I see there are lots of newbies--welcome, and I hope you have the same amazingly positive experiences that I have had.
Hey Sara & Katy--Long time no talk to! I'll try to stop by more. Since I've been healthier, I've been awfully busy living for the first time in years!
Love to all!
Mags
Update from Mags
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
natythingycolbery
- Rockhopper Penguin
- Posts: 590
- Joined: Tue Aug 31, 2010 5:23 pm
- Location: York, United Kingdom
Hey Mags,
I was actually thinking about you an hour or so ago! Did you know I was pondering as to your whereabouts? Glad to hear that you are able to live your life again.
In terms of the SSRI/SNRI thing, I agree, I was very much 'DONT DO IT!!!' But having read that other people have been ok with it, my advice is to just be aware that they can cause issues.
As has been mentioned many times before, this disease is as unique to us all as we are to each other.
I was actually thinking about you an hour or so ago! Did you know I was pondering as to your whereabouts? Glad to hear that you are able to live your life again.
In terms of the SSRI/SNRI thing, I agree, I was very much 'DONT DO IT!!!' But having read that other people have been ok with it, my advice is to just be aware that they can cause issues.
As has been mentioned many times before, this disease is as unique to us all as we are to each other.
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell
Diagnosed with MC (LC) Aug 2010
Diagnosed with MC (LC) Aug 2010
-
MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
HI Mags,
Thrilled to hear that you are doing well on all medical fronts. I agree that what can be potentially bad in one respect might fully be needed in another when medications are involved.
I really wish I could have hit remission in the time it took you but was not that lucky. However, things are going quite good now and am trying to add some things back to the diet.
Continued good health.
Love, Maggie
Thrilled to hear that you are doing well on all medical fronts. I agree that what can be potentially bad in one respect might fully be needed in another when medications are involved.
I really wish I could have hit remission in the time it took you but was not that lucky. However, things are going quite good now and am trying to add some things back to the diet.
Continued good health.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Hi Mags,
Thanks for the update. It's great to see that so many things in your life are finally going your way, so that you're able to truly enjoy life.
You're right about the SSRIs/SNRIs, of course. For some people, they're like poison, while others consider them to be miracle drugs. As you noticed, through your own experience, the act of eliminating certain problem foods from the diet, can reduce, (and maybe eventually eliminate), the need for such medications.
Based on my own experience with neurologists, I truly believe that they sorely need to get with the program, and learn about the effects that food sensitivities have on the brain, and the central nervous system, and especially the way that so many of these issues are connected with certain autoimmune diseases. Neurologists are even less well informed about the effects of food sensitivities on their field of expertise, than GI docs are.
By the same token, psychologists are in the same boat as neurologists, and IMO, they need to drastically shift gears, to update the way that they think about these issues, also, (as do rheumatologists, for that matter). The various body systems are not an island unto themselves, (just as Hemingway pointed out that no man is an island, in his novel For Whom The Bell Tolls). All the body systems are complexly interconnected, and what happens to one, affects the others. And it doesn't take a rocket scientist to figure that out.
Sorry to get sidetracked. Anyway, I'm glad to see that you're doing so well, these days. Thanks for the update.
Love,
Tex
Thanks for the update. It's great to see that so many things in your life are finally going your way, so that you're able to truly enjoy life.
You're right about the SSRIs/SNRIs, of course. For some people, they're like poison, while others consider them to be miracle drugs. As you noticed, through your own experience, the act of eliminating certain problem foods from the diet, can reduce, (and maybe eventually eliminate), the need for such medications.
Based on my own experience with neurologists, I truly believe that they sorely need to get with the program, and learn about the effects that food sensitivities have on the brain, and the central nervous system, and especially the way that so many of these issues are connected with certain autoimmune diseases. Neurologists are even less well informed about the effects of food sensitivities on their field of expertise, than GI docs are.
By the same token, psychologists are in the same boat as neurologists, and IMO, they need to drastically shift gears, to update the way that they think about these issues, also, (as do rheumatologists, for that matter). The various body systems are not an island unto themselves, (just as Hemingway pointed out that no man is an island, in his novel For Whom The Bell Tolls). All the body systems are complexly interconnected, and what happens to one, affects the others. And it doesn't take a rocket scientist to figure that out.
Sorry to get sidetracked. Anyway, I'm glad to see that you're doing so well, these days. Thanks for the update.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Sorry for the tangent - that's a great quote, and Hemingway was tipping his hat to John Donne. See esp. the third paragraph here:
http://www.luminarium.org/sevenlit/donn ... tion17.php
No man is an island, entire of itself; every man is a piece of the continent, a part of the main; if a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend's or of thine own were; any man's death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bell tolls; it tolls for thee.
We discussed this quote when I was in junior high, but I have never read the full essay. (I think we were contrasting it with the Simon & Garfunkel song, "I am a rock; I am an island"... and I'm guessing they were familiar with the John Donne as well10
You're right, Tex, that it doesn't take a rocket scientist to figure that out... but maybe we should get a rocket scientist to explain it to the medical profession anyway
Love,
Sara
http://www.luminarium.org/sevenlit/donn ... tion17.php
No man is an island, entire of itself; every man is a piece of the continent, a part of the main; if a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend's or of thine own were; any man's death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bell tolls; it tolls for thee.
We discussed this quote when I was in junior high, but I have never read the full essay. (I think we were contrasting it with the Simon & Garfunkel song, "I am a rock; I am an island"... and I'm guessing they were familiar with the John Donne as well10
You're right, Tex, that it doesn't take a rocket scientist to figure that out... but maybe we should get a rocket scientist to explain it to the medical profession anyway
Love,
Sara
Sara,
Yes, I remember that Hemingway referenced Donne's poem in the introduction to the book, (at least I think it was in the introduction). I read that book over 50 years ago, but Donne's lines made such an impression on me that I've never forgotten them. Thanks for pointing that out, though - I realize that I should have mentioned that little detail in my post, but I'm so bad about getting sidetracked, that I was afraid that someone might sic the trivia police on me if I carried that line of thought too far. Sooooooooo, in an effort to economize on words a bit, I figured that more readers would recognize Hemingway's name, than John Donne's. That may have been a poor choice, though - most people here have probably read a lot more famous literature than I have. I haven't read a book in ages.
Love,
Tex
Yes, I remember that Hemingway referenced Donne's poem in the introduction to the book, (at least I think it was in the introduction). I read that book over 50 years ago, but Donne's lines made such an impression on me that I've never forgotten them. Thanks for pointing that out, though - I realize that I should have mentioned that little detail in my post, but I'm so bad about getting sidetracked, that I was afraid that someone might sic the trivia police on me if I carried that line of thought too far. Sooooooooo, in an effort to economize on words a bit, I figured that more readers would recognize Hemingway's name, than John Donne's. That may have been a poor choice, though - most people here have probably read a lot more famous literature than I have. I haven't read a book in ages.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Dear Tex
I think quite a few members here are connected to the media in various ways. It would be great to strategize max impact and how to answer (disarm) the attack that is bound to come from big Pharma's well funded PR machine (although, answering Big Pharma may be integral to the book).
What I am thinking is how can we make sure that your message is not sidelined in the way Dr Fines seems to be.
Best, ant
You are so articulate and, what with all the erudite literary discussion here, I am thinking......How is your the book coming along?I truly believe that they sorely need to get with the program, and learn about the effects that food sensitivities have on the brain, and the central nervous system, and especially the way that so many of these issues are connected with certain autoimmune diseases. Neurologists are even less well informed about the effects of food sensitivities on their field of expertise, than GI docs are.
I think quite a few members here are connected to the media in various ways. It would be great to strategize max impact and how to answer (disarm) the attack that is bound to come from big Pharma's well funded PR machine (although, answering Big Pharma may be integral to the book).
What I am thinking is how can we make sure that your message is not sidelined in the way Dr Fines seems to be.
Best, ant
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Zizzle--
Yep, still drinking the shakes. I make them with lactose-free milk and add a banana and strawberries or blueberries. I have a commercial-type blender, so I'm able to get my fruit fix daily without having any problems. I've had to cut down on the carbs like gluten-free bread and pasta, though. I don't want (and can't afford) to buy a new wardrobe!
Katy--was thinking of you, too. I hang out at ScienceBlogs a lot, and some epic troll was hijacking a thread on Pharyngula about how absolutely awful the Uni of York was. He made a fun chew toy until PZ finally put him in the dungeon. It was the one about psychopaths, if you want to take a look.
Absolutely adore Donne, of course. Love the part in Sayers' Busman's Honeymoon when Harriet gives Lord Peter the Donne original he was trying to buy.
Love to Tex and Sara.
Will try to stop by more.
Think of me today. I have the 3-hour appt. with the government shrink to try to get my disability. MC is not enough!
Mags
Yep, still drinking the shakes. I make them with lactose-free milk and add a banana and strawberries or blueberries. I have a commercial-type blender, so I'm able to get my fruit fix daily without having any problems. I've had to cut down on the carbs like gluten-free bread and pasta, though. I don't want (and can't afford) to buy a new wardrobe!
Katy--was thinking of you, too. I hang out at ScienceBlogs a lot, and some epic troll was hijacking a thread on Pharyngula about how absolutely awful the Uni of York was. He made a fun chew toy until PZ finally put him in the dungeon. It was the one about psychopaths, if you want to take a look.
Absolutely adore Donne, of course. Love the part in Sayers' Busman's Honeymoon when Harriet gives Lord Peter the Donne original he was trying to buy.
Love to Tex and Sara.
Will try to stop by more.
Think of me today. I have the 3-hour appt. with the government shrink to try to get my disability. MC is not enough!
Mags
Mags,
MC should qualify, according to the revisions a couple of years ago in the Americans With Disabilities Act. Check out these threads:
http://www.perskyfarms.com/phpBB2/viewt ... lities+act
http://www.perskyfarms.com/phpBB2/viewt ... lities+act
Here's a thread where a member posted about her disability application, and farther down in the thread she posted about receiving an approval:
http://www.perskyfarms.com/phpBB2/viewt ... lities+act
I seem to recall that one or two others have posted about successfully applying for and receiving SS disability, but I can't recall who they were.
Good luck with this. In the past, it has usually been necessary to hire an attorney who specializes in this area, in order to successfully apply, but the ADA revisions should make it easier to win approval, since it removed many of the "burden of proof" requirements. Basically, verification of a diagnosis should be sufficient - proof of actual disability is no longer a requirement, according to most interpretations.
Love,
Tex
MC should qualify, according to the revisions a couple of years ago in the Americans With Disabilities Act. Check out these threads:
http://www.perskyfarms.com/phpBB2/viewt ... lities+act
http://www.perskyfarms.com/phpBB2/viewt ... lities+act
Here's a thread where a member posted about her disability application, and farther down in the thread she posted about receiving an approval:
http://www.perskyfarms.com/phpBB2/viewt ... lities+act
I seem to recall that one or two others have posted about successfully applying for and receiving SS disability, but I can't recall who they were.
Good luck with this. In the past, it has usually been necessary to hire an attorney who specializes in this area, in order to successfully apply, but the ADA revisions should make it easier to win approval, since it removed many of the "burden of proof" requirements. Basically, verification of a diagnosis should be sufficient - proof of actual disability is no longer a requirement, according to most interpretations.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Well,Ant wrote:what with all the erudite literary discussion here, I am thinking......How is your the book coming along?
"slowly but surely" is probably the best answer. I spend too much time on the board, (can't seem to stay away 
), and after allowing for regular work, I don't get to spend near as much time writing, as I need to do, to get it finished anytime soon. I recently revised the layout, to improve the way that the information is presented, (IMO), but I'm probably spending too much time on references, when I should just be writing. I keep thinking that a lot of doctors could benefit from reading the book, and it would obviously need to be extensively referenced, to justify their consideration, but I'm pretty sure that's just wishful thinking, because most doctors surely don't have the slightest interest in reading a book about a disease, written by someone who is not even a medical professional, let alone a recognized authority in the GI field.Probably, a more logical approach would be to write a non-technical version, for those who are only interested in getting their life back, and writing a "high-octane" version, for anyone who wants to know all the gory details, and for those who expect to see all the scientific "i's" dotted and all the "t's" crossed.
I've settled, (at least for now), on the title, Understanding the mysteries of Microscopic Colitis, and learning how to control it’s symptoms, so I suppose I could "dumb it down", so to speak, and publish it much sooner, and then start working on a sequel called something like, "Microscopic Colitis for Professionals and Advanced Amateurs".
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
I think you could put the gorier details into an appendix, and appeal to both audiences. I would guess that a lot of MC readers would be starting out with a "please help me stop the madness" level of reading, but as things calm down, and they understand the connection with other symptoms, or problems relatives may be having, and genetics, they'd be glad to be able to dip a toe into deeper waters.
I'm also thinking it might make it easier for you, instead of having to finish such a big effort twice... but on the other hand, you could probably wrap up the first, less technical book sooner, and it's always nice to push something over the finish line!
I know what you mean about the board - I can't stay away, either. I'll feel quite out of touch while we're traveling, even though I expect to be able to check in from time to time!
Hoping to do some writing on that trip myself. I hope you can carve out an hour or two more per week than usually seems possible. I find when I'm writing, that I write, and when I'm not - well, I just never get to it...
Thanks for the update on your progress. I'm very glad you're working on this.
Love,
Sara
I think you could put the gorier details into an appendix, and appeal to both audiences. I would guess that a lot of MC readers would be starting out with a "please help me stop the madness" level of reading, but as things calm down, and they understand the connection with other symptoms, or problems relatives may be having, and genetics, they'd be glad to be able to dip a toe into deeper waters.
I'm also thinking it might make it easier for you, instead of having to finish such a big effort twice... but on the other hand, you could probably wrap up the first, less technical book sooner, and it's always nice to push something over the finish line!
I know what you mean about the board - I can't stay away, either. I'll feel quite out of touch while we're traveling, even though I expect to be able to check in from time to time!
Hoping to do some writing on that trip myself. I hope you can carve out an hour or two more per week than usually seems possible. I find when I'm writing, that I write, and when I'm not - well, I just never get to it...
Thanks for the update on your progress. I'm very glad you're working on this.
Love,
Sara
Sara,
Actually, the way I'm currently going about it, is to write detailed chapters, each followed by a brief, non-technical summary, which highlights the main points, for the benefit of those who might be inclined to skip a chapter, because they feel that they're already familiar with the information, or anyone who might want a quick refresher, later. I assume that's a somewhat common way to go about it. I wonder, though, if it might be more useful for many readers, to place the summary first, in each chapter, followed by a detailed treatment. That would probably be a flagrant breach of some law in the publishing industry, though, because it would almost surely lead to fewer people reading the details.
And I'm the same way as you - when I'm writing, I tend to be focused and intense, and I write as though I were possessed - the problem is, if I don't have enough time available in one block, so that I feel that I can really get into the swing of things, I have a hard time convincing myself to get started. Obviously, I'm naturally lazy, and a world-class procrastinator.
Love,
Tex
Actually, the way I'm currently going about it, is to write detailed chapters, each followed by a brief, non-technical summary, which highlights the main points, for the benefit of those who might be inclined to skip a chapter, because they feel that they're already familiar with the information, or anyone who might want a quick refresher, later. I assume that's a somewhat common way to go about it. I wonder, though, if it might be more useful for many readers, to place the summary first, in each chapter, followed by a detailed treatment. That would probably be a flagrant breach of some law in the publishing industry, though, because it would almost surely lead to fewer people reading the details.
And I'm the same way as you - when I'm writing, I tend to be focused and intense, and I write as though I were possessed - the problem is, if I don't have enough time available in one block, so that I feel that I can really get into the swing of things, I have a hard time convincing myself to get started.
Obviously, I'm naturally lazy, and a world-class procrastinator. Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.