Hi All,
It's been 6 months since a post ;( It hasn't been a very good 6 months.
I am currently not coping very well with managing my RA. I was doing so well keeping it under control and at bay through diet and supplements but everything stopped working and I actually gave in and tried methotrexate along with Simponi. It was something I never thought I would do, but in Jan and Feb I was unable to dress myself, put my hair up, open doors, drive... and most importantly I couldn't tend to my little guy. I had to rely on my husband and that was difficult for me.
Simponi was amazing.... for about 3 mths. Then it just completely stopped working. I have continued to eat super clean (no grains, limited sugar, no dairy, chemical free, whole foods only) but alas.... inflammation city!
So, I am moving on up the RA med line and I am scheduled for my first Rituxan infusion next Friday. Scary a bit but I'm trying not to google the side effects. I just need to feel good for a little while. I've had it with not being able to function. I feel like I'm banging my head into a wall.
Are any of you on Rituxan? Does it work for you?
Friday, August 17, 2012
Sunday, February 26, 2012
Good news/ Bad News
Hi All.
Where to start. I guess first and foremost thanks for the nice comments and well wishes! It certainly helps me, having this blog to turn to when the going gets rough! It also keeps me honest and while I've been avoiding a post (you'll soon know why....) I know it's important for me to document my progess and what's going on.
January & most of Feb have SUCKED ASS. Haha. Everyone says to me "you're so positive, it's great" and really I am... I swear...but I've had a rough go! Lots and lots of tears and frustrations. Lots of feeling sorry for myself. I got so bad that I needed L to dress me every morning, do up my bra... my pants.. and even pull up my Lulu pants- couldn't even grasp the waist to lift them. That was when I knew I was in trouble.
A lot of people are commenting and asking why I don't just go on a Biologic again. I can understand why you are asking.. it seems like the easy thing to do. I've decided to try to manage my RA naturally. I have already done lots of testing (via elimination diet) and I know that what I eat plays a HUGE role in my RA and Inflammation. Is it only food? I don't know. Does weather come into play? I don't know. My supplements and Naturopathic rememdies? I don't know. I think they all play a factor but I'm not really sure and I am not organized enough to test all the theories.
With that being said..... (here's the BAD part....) I'm on prednsione and celebrex at the moment. When my doc saw my hands (and tears) she also gave my percacet. A lot of them too! I was desperate for some relief. I needed to feel better and I needed it fast. Well, the cocktail of prednisone/celebrex and a perc sure fixed me up! I went from not being able to pull my pants on into a fast talkling, high as a kite, mega house cleaning superwoman! And in a matter of 20 min!!
That was a few weeks ago. Today, I have tapered down to 20mg of prednsisone. No celebrex, no percacets.
My special diet (clean / paleo like) got off track.
Now- I am on a mission to get back to where I was. Clean diet of just veg and meat. No sugar, grains, dairy, even removing eggs and nuts for a while...)
I am off for a holiday to Florida so I will get lots of rest and take care of me. I will come back in good shape!
Where to start. I guess first and foremost thanks for the nice comments and well wishes! It certainly helps me, having this blog to turn to when the going gets rough! It also keeps me honest and while I've been avoiding a post (you'll soon know why....) I know it's important for me to document my progess and what's going on.
January & most of Feb have SUCKED ASS. Haha. Everyone says to me "you're so positive, it's great" and really I am... I swear...but I've had a rough go! Lots and lots of tears and frustrations. Lots of feeling sorry for myself. I got so bad that I needed L to dress me every morning, do up my bra... my pants.. and even pull up my Lulu pants- couldn't even grasp the waist to lift them. That was when I knew I was in trouble.
A lot of people are commenting and asking why I don't just go on a Biologic again. I can understand why you are asking.. it seems like the easy thing to do. I've decided to try to manage my RA naturally. I have already done lots of testing (via elimination diet) and I know that what I eat plays a HUGE role in my RA and Inflammation. Is it only food? I don't know. Does weather come into play? I don't know. My supplements and Naturopathic rememdies? I don't know. I think they all play a factor but I'm not really sure and I am not organized enough to test all the theories.
With that being said..... (here's the BAD part....) I'm on prednsione and celebrex at the moment. When my doc saw my hands (and tears) she also gave my percacet. A lot of them too! I was desperate for some relief. I needed to feel better and I needed it fast. Well, the cocktail of prednisone/celebrex and a perc sure fixed me up! I went from not being able to pull my pants on into a fast talkling, high as a kite, mega house cleaning superwoman! And in a matter of 20 min!!
That was a few weeks ago. Today, I have tapered down to 20mg of prednsisone. No celebrex, no percacets.
My special diet (clean / paleo like) got off track.
Now- I am on a mission to get back to where I was. Clean diet of just veg and meat. No sugar, grains, dairy, even removing eggs and nuts for a while...)
I am off for a holiday to Florida so I will get lots of rest and take care of me. I will come back in good shape!
Wednesday, February 8, 2012
Guest Post from Jenna Walters
Hi All,
Still dealing with my flare up. I have had some small improvements, but unfortunately they seem to be followed with a huge step back. I am eating very clean and getting lots of rest. I think the weather here in Ottawa plays a factor. I know a lot of people that have had a challenging January.
An online friend, Jenna Walters has been kind enough to offer this article she wrote with regards to Arthritis and alternative methods. Thank you Jenna for taking the time ;)
An Alternative for Arthritis
Arthritis is a general term for a number of conditions involving symptoms such as chills, pain, joint stiffness, swelling and fever among others depending on condition. The impact of this disease can be so debilitating, it is important to research ways in which to best relieve your ailments.
Arthritis can be treated in several different ways but finding the right treatment can be exhausting. Alternative methods used in conjunction with conventional treatments have been found to improve health in individuals with illnesses ranging from peritoneal mesothelioma to arthritis. The benefits of trying alternative and natural therapy methods include easier access, cheaper medical bills, and a healthier body and lifestyle.
In ancient times, it was believed throughout the world that the root cause of ailments was the body's buildup of toxins. This accumulation of toxins and incomplete processes of food in the gastrointestinal tract can be thought to be a source of decreased immunity. This concept of toxicity, food allergens and environmental toxic sources lead to a creation of immune complications, which in turn creates the many symptoms in patients suffering from arthritis. Natural therapy, including taking supplements and herbs, and taking care of your intestinal tract, can increase your chances of becoming symptom free. It's important to understand that taking non-steroidal anti-inflammatory agents(NSAIDS) make the lining of your intestinal tract weaker, thus, giving you "leaky gut" which leads to worsening of disease. The intestinal tract's position and processes are integral in keeping your body healthy because it is the body's first line of defense. Keeping awareness of what can induce GI inflammation will be an essential way of managing your arthritis. Supplements with antioxidants, such as Vitamin E, Vitamin C, and gluthathione can decrease inflammatory response. Supplements containing sulphur can help enable the liver to process the onslaught of toxins.
Using alternative treatment with traditional medicine can help make arthritis much more manageable and safer. Supplements such as white willow bark, kava-kava, and Jamaican dogwood can help with pain management. Wintergreen, cloves and Boswellia are also very helpful in improving arthritic symptoms. Please make an effort to educate yourself on these safer and healthier treatment practices. There is ample research for your review.
Still dealing with my flare up. I have had some small improvements, but unfortunately they seem to be followed with a huge step back. I am eating very clean and getting lots of rest. I think the weather here in Ottawa plays a factor. I know a lot of people that have had a challenging January.
An online friend, Jenna Walters has been kind enough to offer this article she wrote with regards to Arthritis and alternative methods. Thank you Jenna for taking the time ;)
An Alternative for Arthritis
Arthritis is a general term for a number of conditions involving symptoms such as chills, pain, joint stiffness, swelling and fever among others depending on condition. The impact of this disease can be so debilitating, it is important to research ways in which to best relieve your ailments.
Arthritis can be treated in several different ways but finding the right treatment can be exhausting. Alternative methods used in conjunction with conventional treatments have been found to improve health in individuals with illnesses ranging from peritoneal mesothelioma to arthritis. The benefits of trying alternative and natural therapy methods include easier access, cheaper medical bills, and a healthier body and lifestyle.
In ancient times, it was believed throughout the world that the root cause of ailments was the body's buildup of toxins. This accumulation of toxins and incomplete processes of food in the gastrointestinal tract can be thought to be a source of decreased immunity. This concept of toxicity, food allergens and environmental toxic sources lead to a creation of immune complications, which in turn creates the many symptoms in patients suffering from arthritis. Natural therapy, including taking supplements and herbs, and taking care of your intestinal tract, can increase your chances of becoming symptom free. It's important to understand that taking non-steroidal anti-inflammatory agents(NSAIDS) make the lining of your intestinal tract weaker, thus, giving you "leaky gut" which leads to worsening of disease. The intestinal tract's position and processes are integral in keeping your body healthy because it is the body's first line of defense. Keeping awareness of what can induce GI inflammation will be an essential way of managing your arthritis. Supplements with antioxidants, such as Vitamin E, Vitamin C, and gluthathione can decrease inflammatory response. Supplements containing sulphur can help enable the liver to process the onslaught of toxins.
Using alternative treatment with traditional medicine can help make arthritis much more manageable and safer. Supplements such as white willow bark, kava-kava, and Jamaican dogwood can help with pain management. Wintergreen, cloves and Boswellia are also very helpful in improving arthritic symptoms. Please make an effort to educate yourself on these safer and healthier treatment practices. There is ample research for your review.
Saturday, January 28, 2012
Today...Part 2
Hi...
Thought it might be neat to post a pic of my hand. It gives you an idea of how thick my inflammation is... I would love to see yours. Is that weird!? LOL. Because I'm boy cotting my rheumatologist... I don't really know how bad/ serious this is.
Also- wondering if any of you out there have tried low dose naltrexone or hormone therapy? I'd be very interested in your experiences. My RA came when I went off the pill and got much better when pregnant (hormones!)
Do you think my hand modelling days are over?
If you want to email me one of your hand pics... I'd post it on here! jen_mcconnery@yahoo.ca
Thought it might be neat to post a pic of my hand. It gives you an idea of how thick my inflammation is... I would love to see yours. Is that weird!? LOL. Because I'm boy cotting my rheumatologist... I don't really know how bad/ serious this is.
Also- wondering if any of you out there have tried low dose naltrexone or hormone therapy? I'd be very interested in your experiences. My RA came when I went off the pill and got much better when pregnant (hormones!)
If you want to email me one of your hand pics... I'd post it on here! jen_mcconnery@yahoo.ca
Lots to report- New Beginnings
Hi All. Well... what a month. A terrible, inflammation filled, painful month. It has been one of the worst ever.
As I sat with my Naturopath, scratching my head... as it didn't seem blatantly obvious what had changed...we realized the following:
- over Xmas, I cheated much more than usual
- I got off track with my Intravenous Vit C & B injections
- I ran out of 2 important supplements a few months ago and never replaced them (Probiotics & Fish oil)
- I'm going through more stress than normally (life stuff)
So really, it should be no surprise that I found myself in a huge bad nasty flare up. It got really bad. Like the old days where I couldn't open doors, couldn't start the car let alone grip the steering wheel. I needed help getting dressed in the morning. I couldn't use my hands at all until popping pills and many hot baths.
Anyway- fast forward to today.... it's Day 3 of my crazy strict elimination diet. The one I started with! Remember? http://www.frot.co.nz/dietnet/reviews/mcferran01.htm
And just like it did the first time...it's working. I'm already feeling better. It's hard as hell to do... I'm hungry and bitchy! But my swelling is going down. In a few days, I will be a new woman. I know it.
Thanks everbody for your comments and suggestions. I am inspired by you guys and what you've done and tried to help with your own RA. A lot of things I've never heard of (sea cucumber) but I will look into it!
I'll keep you posted on my flare up... and diet... I anticipate being in top form by Monday!
As I sat with my Naturopath, scratching my head... as it didn't seem blatantly obvious what had changed...we realized the following:
- over Xmas, I cheated much more than usual
- I got off track with my Intravenous Vit C & B injections
- I ran out of 2 important supplements a few months ago and never replaced them (Probiotics & Fish oil)
- I'm going through more stress than normally (life stuff)
So really, it should be no surprise that I found myself in a huge bad nasty flare up. It got really bad. Like the old days where I couldn't open doors, couldn't start the car let alone grip the steering wheel. I needed help getting dressed in the morning. I couldn't use my hands at all until popping pills and many hot baths.
Anyway- fast forward to today.... it's Day 3 of my crazy strict elimination diet. The one I started with! Remember? http://www.frot.co.nz/dietnet/reviews/mcferran01.htm
And just like it did the first time...it's working. I'm already feeling better. It's hard as hell to do... I'm hungry and bitchy! But my swelling is going down. In a few days, I will be a new woman. I know it.
Thanks everbody for your comments and suggestions. I am inspired by you guys and what you've done and tried to help with your own RA. A lot of things I've never heard of (sea cucumber) but I will look into it!
I'll keep you posted on my flare up... and diet... I anticipate being in top form by Monday!
Sunday, January 8, 2012
Flare up!
Hi Fellow RAer's! I need your help.
I'm in a very bad flare up. Have been for over a week now. It's not that I went crazy off my nutrition or anything, a little bite here or there over the holidays so it's leaving me confused.
When I usually flare, it's in my knuckles located in the middles of my fingers. This time it's further up, in the knuckles that attach my fingers to my hand. I also have developed hard bumps on the tops of my hands. And they hurt. My wrists are also affected. My feet are bad too.
So, my question to you is, what do you do when you're really inflamed and flared? What helps get your RA calmed down the quickest. I know the most damage occurs when you're in a flare up so I am trying hard to get this under control.
So far, I am resting, eating only safe foods, epsom salt baths, tylenol/advil.
Anyone??
I'm in a very bad flare up. Have been for over a week now. It's not that I went crazy off my nutrition or anything, a little bite here or there over the holidays so it's leaving me confused.
When I usually flare, it's in my knuckles located in the middles of my fingers. This time it's further up, in the knuckles that attach my fingers to my hand. I also have developed hard bumps on the tops of my hands. And they hurt. My wrists are also affected. My feet are bad too.
So, my question to you is, what do you do when you're really inflamed and flared? What helps get your RA calmed down the quickest. I know the most damage occurs when you're in a flare up so I am trying hard to get this under control.
So far, I am resting, eating only safe foods, epsom salt baths, tylenol/advil.
Anyone??
Sunday, December 11, 2011
Moving along!
Hello everyone!
Been a long time..... almost 3 mths. I have been busy taking care of myself and continuing to try to cure my RA... and with quite a bit of success......
What I know for sure....
- RA gets worse when you are stressed. Even when my eating was 100% clean, when I got stressed out, I would flare. I have been undergoing lots of changes in my life. I'm ok, don't worry ;) But I guess all change causes stress!!
- What you put into your body, directly affects RA. I was sick and lots my appetite for about a week and my RA was awesome. The upside of being sick!
Stuff I have been doing... and I think it's been helping...
- Acupuncture in my hands & feet 1x per week
- Large dose of Vitamin C, given intravenously (Dr. Seth also puts in licorice and Vit B)
- Hydrotherapy- every once in a while... great for stimulating the immune system
- Vitamin D, everyday
- Some powdered bad tasting thing that I have to admit I have not been taking. Maybe that will be my New Year's resolution......
How are you guys doing? What do you find hekps?
I've been off prednisone for a year now! And still don't take any of the big bad drugs anymore...
I've got some exciting news- I'm having a website designed for my Fitness company. I'm very excited and will let you know when it's live!!!
Been a long time..... almost 3 mths. I have been busy taking care of myself and continuing to try to cure my RA... and with quite a bit of success......
What I know for sure....
- RA gets worse when you are stressed. Even when my eating was 100% clean, when I got stressed out, I would flare. I have been undergoing lots of changes in my life. I'm ok, don't worry ;) But I guess all change causes stress!!
- What you put into your body, directly affects RA. I was sick and lots my appetite for about a week and my RA was awesome. The upside of being sick!
Stuff I have been doing... and I think it's been helping...
- Acupuncture in my hands & feet 1x per week
- Large dose of Vitamin C, given intravenously (Dr. Seth also puts in licorice and Vit B)
- Hydrotherapy- every once in a while... great for stimulating the immune system
- Vitamin D, everyday
- Some powdered bad tasting thing that I have to admit I have not been taking. Maybe that will be my New Year's resolution......
How are you guys doing? What do you find hekps?
I've been off prednisone for a year now! And still don't take any of the big bad drugs anymore...
I've got some exciting news- I'm having a website designed for my Fitness company. I'm very excited and will let you know when it's live!!!
Monday, September 12, 2011
Positive update
Hi Guys!
Sorry I've been MIA for a little while. Busy summer, spending lots of quality time with the fam and some travel. Things have been going well with my RA... some flare ups but expected ones. I am about to try a new method- a 4 day rotation diet, that was recommedned to me by my dear friend and RA mentor, Cam, over at http://www.arthritis-alternatives.com/ I highly recommend her blog- she has great info! I will let you know how it goes!
On an amazing note, I am so happy to report that we got news today that my mom, who has been battling stage 3 Lung cancer, is cancer free!! She is a real fighter and we are so proud of her.
Life is pretty damn good. xo
Sorry I've been MIA for a little while. Busy summer, spending lots of quality time with the fam and some travel. Things have been going well with my RA... some flare ups but expected ones. I am about to try a new method- a 4 day rotation diet, that was recommedned to me by my dear friend and RA mentor, Cam, over at http://www.arthritis-alternatives.com/ I highly recommend her blog- she has great info! I will let you know how it goes!
On an amazing note, I am so happy to report that we got news today that my mom, who has been battling stage 3 Lung cancer, is cancer free!! She is a real fighter and we are so proud of her.
Life is pretty damn good. xo
Sunday, July 24, 2011
Old news & some new!
Hi All!
Hope all my fellow RA'ers are doing well. I'd be interested to know if any of you out there have modified your diet and are feeling well??
I have been meaning to write a little "year in review" for some new stumblers. I get a lot of questions asked and I realize that a year's worth of posts are a lot to go through! (and it doesn't help that all posts are listed from most recent to oldest)
Here's a basic summary:
Mid July 2010: Received news from Rheumatologist that I needed to go on Remicade (IV infusion drug) on top of my other meds as my disease was progressing. Other meds were: Naproxyn, Plaquenil, Humira injections & Prednisone. Came home upset and desperate for a gentler approach. Found these web sites containing cool info on healing RA through diet : http://www.frot.co.nz/dietnet/reviews/mcferran01.htm and
http://jhackett_ra.tripod.com/story.html I decided to give it a shot! Had my family read and got their approval/ support.
Aug 1/2010: Started my elimination diet. Tough few days but miraculously by day 4, I could make a tight closed fist upon waking. I hadn't done that in years (and while on meds I should add).
Next 6-8 mths: Highs & Lows... adding foods too fast and winding up in major flare ups, and with no meds. Always felt in control and was able to get myself back under control. Had some amazing weeks where I felt the best I had in years. Was able to open cans, and pick up dumbells first thing in the morning. Got some devestating news that my mom had Lung cancer. I didn't write much about this, but I'm so happy to report that she's doing well and is going to make it :)
Last 4 mths: Have not been as strict as I was in the first 12 months and have paid the price. I've made the mistake of adding back some healthy foods assuming that they wouldn't hurt me. Just because a food is healthy, doesn't mean it's actually good for me and my RA.
A typical good day for me (that doesn't cause flares)
- small black coffee w stevia
- clean chocolate protein shake w unsweetened almond milk
- apple or berries for snack
- spinach salad: avocado, cucumber, walnuts, goat feta w olive oil & little bit vinegar
- nuts or veggies for snack
- bbq chicken or steak with veggies
Things that cause me to flare:
- WINE
- CHEESE
- ARROWROOT COOKIES
-CHOCOLATE
** It should be noted that I love these foods. I sometimes dream about these foods. And if I indulge in item # 1, it often leads to the consumption of all of these foods :(
Where I am today.... I am back to eating very clean and am feeling pretty well. Not as good though as when I first started this journey. I am basically eating "paleo" (like our caveman ancestors ate- meat, fruits & veg) I have added certain foods that I never tested (coconut milk, coconut oil) So I went to see my Naturopath and he did a food sensitivity test (some say it's a waste of $$, I was willing to give it a try..the more assistance that I can get, the better!) Flare ups hurt a lot and I am not afraid to admit when I've screwed up and need a hand. Anyhow, results come in about 2 more weeks.. so we'll go from there. I saw my rheumatologist last week for the first time in a year and he told me he'd like me to try another biologic injection...no thank you.
Wow, what a long post. I realized too, my blog is a little boring, no snazzy pics but what really would I take pics of, my creepy hands or golf ball heels? No thanks! Instead here's a pic of me and my main man ;) Although he's got his mouth full :(
Hope all my fellow RA'ers are doing well. I'd be interested to know if any of you out there have modified your diet and are feeling well??
I have been meaning to write a little "year in review" for some new stumblers. I get a lot of questions asked and I realize that a year's worth of posts are a lot to go through! (and it doesn't help that all posts are listed from most recent to oldest)
Here's a basic summary:
Mid July 2010: Received news from Rheumatologist that I needed to go on Remicade (IV infusion drug) on top of my other meds as my disease was progressing. Other meds were: Naproxyn, Plaquenil, Humira injections & Prednisone. Came home upset and desperate for a gentler approach. Found these web sites containing cool info on healing RA through diet : http://www.frot.co.nz/dietnet/reviews/mcferran01.htm and
http://jhackett_ra.tripod.com/story.html I decided to give it a shot! Had my family read and got their approval/ support.
Aug 1/2010: Started my elimination diet. Tough few days but miraculously by day 4, I could make a tight closed fist upon waking. I hadn't done that in years (and while on meds I should add).
Next 6-8 mths: Highs & Lows... adding foods too fast and winding up in major flare ups, and with no meds. Always felt in control and was able to get myself back under control. Had some amazing weeks where I felt the best I had in years. Was able to open cans, and pick up dumbells first thing in the morning. Got some devestating news that my mom had Lung cancer. I didn't write much about this, but I'm so happy to report that she's doing well and is going to make it :)
Last 4 mths: Have not been as strict as I was in the first 12 months and have paid the price. I've made the mistake of adding back some healthy foods assuming that they wouldn't hurt me. Just because a food is healthy, doesn't mean it's actually good for me and my RA.
A typical good day for me (that doesn't cause flares)
- small black coffee w stevia
- clean chocolate protein shake w unsweetened almond milk
- apple or berries for snack
- spinach salad: avocado, cucumber, walnuts, goat feta w olive oil & little bit vinegar
- nuts or veggies for snack
- bbq chicken or steak with veggies
Things that cause me to flare:
- WINE
- CHEESE
- ARROWROOT COOKIES
-CHOCOLATE
** It should be noted that I love these foods. I sometimes dream about these foods. And if I indulge in item # 1, it often leads to the consumption of all of these foods :(
Where I am today.... I am back to eating very clean and am feeling pretty well. Not as good though as when I first started this journey. I am basically eating "paleo" (like our caveman ancestors ate- meat, fruits & veg) I have added certain foods that I never tested (coconut milk, coconut oil) So I went to see my Naturopath and he did a food sensitivity test (some say it's a waste of $$, I was willing to give it a try..the more assistance that I can get, the better!) Flare ups hurt a lot and I am not afraid to admit when I've screwed up and need a hand. Anyhow, results come in about 2 more weeks.. so we'll go from there. I saw my rheumatologist last week for the first time in a year and he told me he'd like me to try another biologic injection...no thank you.
Wow, what a long post. I realized too, my blog is a little boring, no snazzy pics but what really would I take pics of, my creepy hands or golf ball heels? No thanks! Instead here's a pic of me and my main man ;) Although he's got his mouth full :(
Quote
" The idea on the medical horizon is that chronic inflammation is a root cause of degenerative disease. It is time for medical schools to improve nutrition education. If physicians are trained to use "food as medicine" they may not need to rely on drugs and their distressing side effects to treat the inflammatory process"
-Dr. Andrew Weil
-Dr. Andrew Weil
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