My cousin added the following link after she read my last post. You can't click on it for some reason so I wanted to add a new post with the link. So RA Club Members, if you don't want to explain or you feel lke you can't do it justice, send the "non-believers" this link or tell 'em to wiki RA.
http://en.wikipedia.org/wiki/Rheumatoid_arthritis
Friday, July 3, 2009
Walk A Few Feet In My Shoes
Normally we hear or use the saying, "Walk a mile in my shoes". I decided to title this post "Walk A Few Feet In My Shoes" because the reality for many people with RA is that walking just a foot or two can be the most difficult task they do on a daily basis. This post was my response to a blog entry from Kelly. You guys know her as RA Warrior. The link for the post is below for you to read if you choose. She blogged about people not really understanding what RA is and how it can make those living with RA feel.
http://rawarrior.blogspot.com/2009/07/rheumatoid-arthritis-breaks-your-heart.html
MY COMMENT:
Well kids, as much as I would like to make a list of people who I want to spend a day in my shoes, I don't know if I would wish this disease on my worst enemy. And, luckily, even tho I've been feeling really good from the meds I'm on, this is still an every-day battle.
There are so many other things aside from the pain and swelling. Between knowing I can never have anymore children to my diet changes to the monthly blood tests to the possibility that I may not be able to stay on this med long-term to organ damage, etc who would want all this?
So aside from wishing this kind of pain and lifestyle changes on others, how about if we just start saying to these people in out lives:
"I'm sorry that you don't understand the disease I have and what I'm going thru. When you have an opportunity, Google RA. Maybe if you read about it, it will all make more sense to you."
I was very leary about telling my friends and family. There are still some people that I am sorry I told. But I figured that people were gonna notice something was wrong. Most days I couldn't walk easily and my hands were in a state of what I like to call perma-swell.
Surprisingly, a couple people were aware of what RA is. A few others asked for clarification. A couple people acted as if I was on my death bed. But most people had no clue. All they heard me say was the word 'arthritis' and then the assumptions began.
I still have to remind people that I don't have creaky joints, and it's not about getting old, and my body isn't wearing out, and all the other responses I have to come up with as answers to the stupid things that people say.
I have also gotten so much unwanted free "medical advice". Anybody else get that?
What I have found is that the people who are in my life who really want to understand are making the effort. They will take my diet changes into consideration. They ask how the drug study is going, is my bloodwork ok, am I still OK on the stairs at work, bring me gluten-free beer, and follow this blog, my Non-Dairy Queen blog & FB page, and follow RA Warrior's FB page. I have friends who follow Kelly's RA Warrior FB page simply for me.
I have also seen more clearly something I always knew.....people fear what they don't understand. Think about it. Where does discrimination come from? Fear. We discriminate against race, religion, creed, nationality, and disability. I have to wonder how many people actually do understand what RA is and have such a blinded view that they are fearful of the worst. I would never ask my BFF to help me walk or anything like that even tho I know she would in a heartbeat. But is that fear latent in the people in out lives? Are they afraid that we may ask for help?
Maybe someday they will really get it. Maybe they won't. But I can't keep worrying about it. If I'm worth it to them, they'll make an effort to really learn about what I'm going thru.
http://rawarrior.blogspot.com/2009/07/rheumatoid-arthritis-breaks-your-heart.html
MY COMMENT:
Well kids, as much as I would like to make a list of people who I want to spend a day in my shoes, I don't know if I would wish this disease on my worst enemy. And, luckily, even tho I've been feeling really good from the meds I'm on, this is still an every-day battle.
There are so many other things aside from the pain and swelling. Between knowing I can never have anymore children to my diet changes to the monthly blood tests to the possibility that I may not be able to stay on this med long-term to organ damage, etc who would want all this?
So aside from wishing this kind of pain and lifestyle changes on others, how about if we just start saying to these people in out lives:
"I'm sorry that you don't understand the disease I have and what I'm going thru. When you have an opportunity, Google RA. Maybe if you read about it, it will all make more sense to you."
I was very leary about telling my friends and family. There are still some people that I am sorry I told. But I figured that people were gonna notice something was wrong. Most days I couldn't walk easily and my hands were in a state of what I like to call perma-swell.
Surprisingly, a couple people were aware of what RA is. A few others asked for clarification. A couple people acted as if I was on my death bed. But most people had no clue. All they heard me say was the word 'arthritis' and then the assumptions began.
I still have to remind people that I don't have creaky joints, and it's not about getting old, and my body isn't wearing out, and all the other responses I have to come up with as answers to the stupid things that people say.
I have also gotten so much unwanted free "medical advice". Anybody else get that?
What I have found is that the people who are in my life who really want to understand are making the effort. They will take my diet changes into consideration. They ask how the drug study is going, is my bloodwork ok, am I still OK on the stairs at work, bring me gluten-free beer, and follow this blog, my Non-Dairy Queen blog & FB page, and follow RA Warrior's FB page. I have friends who follow Kelly's RA Warrior FB page simply for me.
I have also seen more clearly something I always knew.....people fear what they don't understand. Think about it. Where does discrimination come from? Fear. We discriminate against race, religion, creed, nationality, and disability. I have to wonder how many people actually do understand what RA is and have such a blinded view that they are fearful of the worst. I would never ask my BFF to help me walk or anything like that even tho I know she would in a heartbeat. But is that fear latent in the people in out lives? Are they afraid that we may ask for help?
Maybe someday they will really get it. Maybe they won't. But I can't keep worrying about it. If I'm worth it to them, they'll make an effort to really learn about what I'm going thru.
Thursday, July 2, 2009
A-S-S Revived
One of the earlier symptoms I experienced during the on-set of my RA was a hoarseness in voice and a tightness in my throat. I didn't know what it was. Many times while I was talking, it would cut out. If I put any strain on it at all above a normal volume, it would go completely. I had no idea that my voice issues were related to the other symptoms I was having. It wasn't until I started researching RA that I discovered it can affect your vocal chords, voice, and throat.
Since it was hard to raise my voice above normal to talk, imagine what it did to me to sing. This was a real bummer for me because I love to sing, especially in my car. Now I'm not saying I'm any good at it. As a matter of fact, I suck. But I enjoy it. My favorite place to sing is my car because I can crank the radio and no one has to hear me. It's kind of a release for me, especially when I have something like Metallica cranked. Right now, my favorite accompaniment is the new Shinedown CD. So yes, I must admit it. I have A-S-S.....Automobile Singing Syndrome.
I had to give it up for quite a while because I was really afraid that I was going to blow my voice out. But since I've been on the study drug, it has made a difference in my voice. I'd like to say that it made it sound better but, alas, my singing still sucks. But at least I can do it again! So, yay for me! My A-S-S has been revived!
Since it was hard to raise my voice above normal to talk, imagine what it did to me to sing. This was a real bummer for me because I love to sing, especially in my car. Now I'm not saying I'm any good at it. As a matter of fact, I suck. But I enjoy it. My favorite place to sing is my car because I can crank the radio and no one has to hear me. It's kind of a release for me, especially when I have something like Metallica cranked. Right now, my favorite accompaniment is the new Shinedown CD. So yes, I must admit it. I have A-S-S.....Automobile Singing Syndrome.
I had to give it up for quite a while because I was really afraid that I was going to blow my voice out. But since I've been on the study drug, it has made a difference in my voice. I'd like to say that it made it sound better but, alas, my singing still sucks. But at least I can do it again! So, yay for me! My A-S-S has been revived!
Friday, June 26, 2009
Code Name: CP-690,550 Street Name: Miracle Drug
I've had a lot of questions about the RA drug study I'm doing so I decided to post about it. The drug company that has put out the study is called Pfizer. The drug has no official name yet, as it hasn't been approved by the FDA. Right now it's called CP-690,550.
I call this a "miracle" drug because after only 2 doses I saw a near 100% improvement. Obviously because it's a blinded study, you always have the chance to get placebo, which was a scarey thought, especially since I had to go off meds and was in really rough shape without anything. At this point I'm pretty sure I didn't get the placebo. If I had, I would have had the option to get rescue drugs from the doc. I think that the rescue drug is probably prednisone or some other steroid.
Below are 2 links. One is to Pfizer and the other is to clinical trials. All my RA Club buddies, I know that you're all on treaments of some sort but depending on how you're feeling, you may want to check this study out. They are still doing the study all over the place.....even in Japan! I wanted to share this because of the success I've had.
OK. How many contractures are in the audience? Guess what? Mine is gone guys!!! When I first brought it to the doc's attention (it was on my left elbow) he was very concerned. I could hear it in his voice and see it in his face. He said he wanted to keep a very close eye on it. Two weeks after he said that, he was totally amazed to see that it disappeared. his guy was speachless!
That is the biggest success. Not to mention all the things I can do again like walk barefoot, ride a bike, go for long walks, and run stairs.
So check out the links below for more info and to see if there is a study near you.
http://clinicaltrials.gov/ click on "search for clinical trials" then type in "CP-690,550" or you can type in CP-690,550 AND" & you then ad your city after the AND. Or you can just do a search on "rheumatoid arthritis AND" &then add you city after.
http://www.pfizer.com/home/ this site gives background on Pfizer itself
I call this a "miracle" drug because after only 2 doses I saw a near 100% improvement. Obviously because it's a blinded study, you always have the chance to get placebo, which was a scarey thought, especially since I had to go off meds and was in really rough shape without anything. At this point I'm pretty sure I didn't get the placebo. If I had, I would have had the option to get rescue drugs from the doc. I think that the rescue drug is probably prednisone or some other steroid.
Below are 2 links. One is to Pfizer and the other is to clinical trials. All my RA Club buddies, I know that you're all on treaments of some sort but depending on how you're feeling, you may want to check this study out. They are still doing the study all over the place.....even in Japan! I wanted to share this because of the success I've had.
OK. How many contractures are in the audience? Guess what? Mine is gone guys!!! When I first brought it to the doc's attention (it was on my left elbow) he was very concerned. I could hear it in his voice and see it in his face. He said he wanted to keep a very close eye on it. Two weeks after he said that, he was totally amazed to see that it disappeared. his guy was speachless!
That is the biggest success. Not to mention all the things I can do again like walk barefoot, ride a bike, go for long walks, and run stairs.
So check out the links below for more info and to see if there is a study near you.
http://clinicaltrials.gov/ click on "search for clinical trials" then type in "CP-690,550" or you can type in CP-690,550 AND" & you then ad your city after the AND. Or you can just do a search on "rheumatoid arthritis AND" &then add you city after.
http://www.pfizer.com/home/ this site gives background on Pfizer itself
Thursday, June 25, 2009
Protect Your Joints!
Ahhh. Feeling good really made me get careless. I've been doing things that I wouldn't have been able t do 3 weeks ago. But I have not been careful and now I'm paying for that lapse injudgement. I had to pack my classroom up. I decided thatI wanted to trade kidney tables with someone else so I brought mine to the other room got the other table and brought it to my room. While I was going thru the door I dropped the table and my right hand got pinned between the table and the door frame. Needless to say, it hurt like hell. All the knuckles across the back of my hand are swollen. So my RA infested friends, never forget to PROTECT YOUR JOINTS!!!
Wednesday, June 24, 2009
Guinea Pig: Day 15
Today will be the last "Guinea Pig" titled entry. I had my 2-week follow-up today. So here's the skinny:
1. When I was there 2 weeks ago I had 46 inflamed and painful joints. Today I had no joint pain what-so-ever and only 2 swollen. The joints at my ankles/feet are still swollen BUT they are 1/4 the size they were 2 weeks ago.
2. I developed a small rheumatoid nodule on my right elbow some time ago. A few months ago, the bursa on that elbow filled with fluid. It was pretty big.....about the size of a paintball. Looked gross too. Two weeks ago, the doc said the fluid came because the bursa was trying to protect my elbow from the nodule. Today the fluid is gone. It's unclear whether the meds took care of that.
3. I developed a contracture on my left elbow a few of months ago.....while I was on methotrexate. Keeping in mind that a straight line is a 180 degree angle, two weeks ago I couldn't get my arm any straighter than about 120 degrees. Today not only can I straighten my elbow fully, the contracture is pretty much gone.
4. Two weeks ago I could barely walk. Since the meds started Ihave been bike riding, walked from school to Aquinas (about 2 miles round trip), played soccer & tennis with my students, walk around on the grass barefoot (yes it's a big big deal), walk around the house barefoot (on rugs, wood, and ceramic tile.....eaqually as big as walking around on the grass barefooted), and I can take the 80 thousand stairs at work with a run again.
The doctor, nurse, and phys. asst. were all very impressed and excited about my results. So all in all, I'd say.....Pfizer, you done good! Wonder if I can send them a fruit basket.
1. When I was there 2 weeks ago I had 46 inflamed and painful joints. Today I had no joint pain what-so-ever and only 2 swollen. The joints at my ankles/feet are still swollen BUT they are 1/4 the size they were 2 weeks ago.
2. I developed a small rheumatoid nodule on my right elbow some time ago. A few months ago, the bursa on that elbow filled with fluid. It was pretty big.....about the size of a paintball. Looked gross too. Two weeks ago, the doc said the fluid came because the bursa was trying to protect my elbow from the nodule. Today the fluid is gone. It's unclear whether the meds took care of that.
3. I developed a contracture on my left elbow a few of months ago.....while I was on methotrexate. Keeping in mind that a straight line is a 180 degree angle, two weeks ago I couldn't get my arm any straighter than about 120 degrees. Today not only can I straighten my elbow fully, the contracture is pretty much gone.
4. Two weeks ago I could barely walk. Since the meds started Ihave been bike riding, walked from school to Aquinas (about 2 miles round trip), played soccer & tennis with my students, walk around on the grass barefoot (yes it's a big big deal), walk around the house barefoot (on rugs, wood, and ceramic tile.....eaqually as big as walking around on the grass barefooted), and I can take the 80 thousand stairs at work with a run again.
The doctor, nurse, and phys. asst. were all very impressed and excited about my results. So all in all, I'd say.....Pfizer, you done good! Wonder if I can send them a fruit basket.
Tuesday, June 23, 2009
Guinea Pig: Day 14
The swelling in my joint tissue from yesterday was completely gone this morning. Tomorrow morning I have my 2 week appointment with the study doc. Should be interesting. They did tell me that the patients who have been on the drug have had pretty quick results. I wonder if there was a difference for them in the first day. I still am amazed at the differnece that 2 weeks have made.
Monday, June 22, 2009
Guinea Pig: Days 12 &13
Day 12
I forgot to post for yesterday (Sunday) I wen for a bike ride with hubby & kids. There is an old cemetery c1800's that we road to. It was kinda cool. We stopped there to wander around. We played with some horses along they way. It was nice to be able to do all that and not be in pain after.
Day 13
I woke up today with a lot of soft/connective tissus swelling on the joint connecting my index finger to my left hand. I can't bend it to make a fist. It's not painful but what the hell??? I haven't had anything like this in 12 days!
I've started a new blog and fb page dedicated strictly to my diet. My blog is www.thennon-dairyqueen.com but I don't know if I'm going to keep it strictly non-daiy or if I'm going to add the gluten fre stuff too. Maybe I'll start another blog for that. I've find so much cool stuff that I feel I need to have something separate for it.
I forgot to post for yesterday (Sunday) I wen for a bike ride with hubby & kids. There is an old cemetery c1800's that we road to. It was kinda cool. We stopped there to wander around. We played with some horses along they way. It was nice to be able to do all that and not be in pain after.
Day 13
I woke up today with a lot of soft/connective tissus swelling on the joint connecting my index finger to my left hand. I can't bend it to make a fist. It's not painful but what the hell??? I haven't had anything like this in 12 days!
I've started a new blog and fb page dedicated strictly to my diet. My blog is www.thennon-dairyqueen.com but I don't know if I'm going to keep it strictly non-daiy or if I'm going to add the gluten fre stuff too. Maybe I'll start another blog for that. I've find so much cool stuff that I feel I need to have something separate for it.
Saturday, June 20, 2009
Guinea Pig: Day 11/Here Comes The Rain Again
All in all not a bad day today. Woke up a little stiff. I'm still hopefull that it's the rain. I have a couple of kanker sores on my tongue. That is one of the side effects, well, it says "mouth sores" but I only have 2 small ones and I'm thinking that they are from the salt and vinegar on the pistachios I have beem eating. I started taking folate again and they seem to be going away.
We had friends over for dinner and cards. We ordered pizza. I ordered wings.....plain. I made my own wing sauce. Basically it was the same as the regular buffalo wing sauce but instead of butter I used Earth Balance. It was pretty good. I had to make sure that I told the pizza place no sauce and no flour on my wings. They were actually pretty good plain.
I'm thinking of starting another blog just focused on my dairy-free, gluten-free adventures. But there are already so many of them out there. Do we really need one more?
My daughter lost her first tooth today. She looks so cute!
We had friends over for dinner and cards. We ordered pizza. I ordered wings.....plain. I made my own wing sauce. Basically it was the same as the regular buffalo wing sauce but instead of butter I used Earth Balance. It was pretty good. I had to make sure that I told the pizza place no sauce and no flour on my wings. They were actually pretty good plain.
I'm thinking of starting another blog just focused on my dairy-free, gluten-free adventures. But there are already so many of them out there. Do we really need one more?
My daughter lost her first tooth today. She looks so cute!
Friday, June 19, 2009
Guinea Pig: Day 10/I'm Walkin' Yes Indeed!
I can't believe I was actually able to do 1/4 of the stuff I did today! Our school had Field Day at a nearby high school. It was about a mile or so round trip. While we were there I played soccer and tennis with my class. It was great! It felt so good to be out doing things! Maybethis weekend I will try that slip-n-slide.......
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