Wednesday, August 26, 2009
We talked about the drug study that I'm doing and he seemed very impressed with my progress. He was curiuous about what my Sed Rate and CRP are now so he ordered some bloodwork. He is checking my Vitamin D level and thyroid to see about this exhaustion that keeps showing up. He's also checking liver functions and all that happy horse shit.
So needless to say, I am very eager to find out what my Sed Rate & CRP is. I'll let you know!
Last week we made our annual pilgrimage to the ADK. It was better than I had hoped. First and foremost, I got to spend a few days with a very old and dear friend and her family. Secondly, all the worries and wonders I had prior to going were unfounded.
Packing is like an olympic event in our house. We have to pack for 4.....OK, who am I kiding.....I have to pack for 4. Plus we have 2 large bins full of camping equipment plus we now have a canoe. Most stuff wasn't too difficult to pack and load.....Scott helped alot with that. My worry was how the hell was I going to lift my end of a 70 pound canoe and get it on and off my truck? Well, I was actually surprised that they only difficulty was that that thing is damn heavy! But Physically I was able to get it on the truck and I had no issues after. My friend's hubby helped Scott get it off when we got there. Thanks again Marty!
We tent-camp and haven't had an air-mattress in a few years.....ever since the mice made a snack out of the old one. I kept meaning to buy a new one but never seemed to get around to it. I really worried about sleeping on the ground this year. Was I going to be able to get up in the mornings? Would I be stiff? In pain? I am happy to say that I had no issues sleeping on ground. I really was surprised. I thought I was going to have to go to the nearest town and buy an air matteress. I hate setting up and taking down my tent. But even more, I hate the thought of possibly having to buy a camper some day in the near future. I always have to keep in mind if I even should be sleeping on the ground.....padded or not. This year I was able to stay camper-free.
Another worry was, would I even be able to do anything? We usually hike, canoe, walk, walk, hike, swim, shopping day in Lake Placid, etc. You get the point. We haven't hiked a mountain since we've had the kids. (I wanted to this year but didn't find a small enough one that my daughter may be able to do until the day we left.) We did a lot. I don't think we sat around one day. The easiest day was probably the day we canoed. Although I had to remain very conscious of how I held the paddles, it was surprisingly easy. I did have some muscle pain after but nothing more than a workout burn. Swimming was great. I was in the pond almost every day. And all the walking we did (which was my biggest worry) no problem.
So all in all, it was a great vacation. Honestly, the most difficult things for me were coming home (only because I would love to live there) and being away from my blender and juicer for a week. I can't wait to make my reservations for next year!
Tuesday, August 4, 2009
It was great to see the kids play. I love watching my kids play. I love to see their immaginations come to life. They were playing one game in the pool that they made up and they decided that the winner was going to get to dress up Chris (my sister's fiance') to look like a girl.....right down to balloons and a bra.
I also love to watch them solve their own problems. Too often as adults we interfere where we shouldn't, not letting them become independent thinkers.
One of my favorite parts of the day was watching the kids interact with Christopher. Christopher is my cousin's nearly 3 year old son. He was diagnosed with autism a few months ago. I love to see him because I can see new things every time. Today he was having a ball with my son Connor. Connor was so protective of Chris. Whenever Chris wanted to go on the slide, Connor followed him up the ladder and encouraged him on. Then he ran around to the bottom of the slide to catch him when he came down. He made sure that the other kids were careful and aware of him as he climbed the swingset.
Chris seemed a little more into me today too. Sometimes he looks at me like I'm a crazy nut. He let me push him onthe swing and when I wasn't doing i high enough he told me so. At one point, Chris and I were playing peek-a-boo by some bushes and I got the feeling he was urging me to chase him. He would run a few steps then stop and look at me then run a few more steps, stop and look at me, you get the picture. Running was the last thing I would have ever thought myself doing today but I figured, what the hell. He's only 3 so I gave chase. It was the best feeling! I got to run with someone who wasn't gonna leave me in the dust. Actually, he stopped every few minutes to let me catch him and tickle him. (Maybe he sensed that I would need to stop briefly to check myself.) Then we would run some more. I know how good interaction with others is for Chris. Today it was good for me too. He allowed me to do something I have been afraid to try for a while. Run. Even though I know how good I feel, there is always that fear that I'll do something to ruin it. Today that never occured to me. My only thought was, "How awesome is this! Chrissy's leting me chase him and catch him and tickle him!" The only thing I saw was Chris having a good time and laughing and interacting and playing. I was elated with that and with myself. I was so elated that it carried over several hours later when.....
"Daddy, you said we could go play tennis tonight." That was my son reminding my husband of his promise to go to the tennis courts down the road.
A couple of days ago when this came up I was horrified. Of course I would be expected to go. And I would be expected to participate. And all I could think was , "Yeah, I'm gonna be walking around the tennis courts. Great fun!"
Tonight, my mind-set was different. Mainly it was due to playing with Chris. I figured this.....my kids really aren' that great at tennis. Mackenzie only hits the ball once ever dozen times. I can just sorta stand there. No problem. Well, Connor was much better than I expected and he had me running.....literally RUNNING! I was no where near as active as I was the last time I was on a tennis court but I didn't have to stop and say, "Sorry kids. Mommy is in too much pain to play." I was able to keep up with them.
I'm trying not to think about tomorrow and if I'll be able to function. I'm just going to listen to the sounds of Chrissy's giggle and my son saying,"Jump higher Mommy!" as I remember the day that I finally stepped up my running game to play with a child.
Thank you Beth for sharing your son with me today.
Saturday, July 25, 2009
An aquaintance of mine that I met thru Katie was also there. The dairy questions didn't go unnoticed by her. She asked me if I was lactose intollerent and I said no but didn't elaborate. We got to talking about her fiance's knees and all the pain he has been having with them. (Her fiance is the brother of Ben.) I asked her if he maybe has OA. She asked me what OA is so I told her it was ostheo-arthritis. I gave her the name of my orthopedic surgeon and we continued to talk.
After about 10 minutes, my RA came up, as I explained to her why I wasn't eating dairy or gluten. She asked mw what it was so I just simply said that it's an auto-immune disease. She then asked someting that most people didn't ever ask after I would say "RA is an auto-immune disease." She said. "What does that mean exactly?" She was searching for answers. I was floored.
We spent the next 20 minutes or som talking about RA. Well, I talked and she listened. She really took a genuine interest in it. She asked about treatments and I explained the difference between NSAIDs, DMARDs, and Biologics. I told her what led to my diagnosis. I told her about my treatment now.
I can't tell you how refeshing it was to have someone who I really don't know that well to actually be geniunly curious. There were no comments about how "It sucks to get old." or "Have you tried Aleve because that helps my arthritis." or any other silly comments I've gotten.
So my fellow RAers, there is hope out there! There are people who don't know this disease from Adam that are willing to learn about it! WOOT! Now if we can only get more on board!
Thursday, July 23, 2009
1. one that wins first place or prize in a compitition,
2. one who is clearly superior or has the attributes of a winner,
3. an ardent defender or supporter of a cause or another person,
4. one who fights,
5. a warrior
As you can see from the above definition, the word champion mean several different things. This blog will encompass all five definitions.
As a hard-core NY Giants fan, it was sometimes difficult growing up in a family of primarily Buffalo Bills fans. To make things more amusing I went and married a Dallas Cowboys fan who comes from a hard-core Cowboys family, except Uncle Jimmy who is a Giants fan. And now I have struck up a wonderful friendship with a Redskins fan. Who woulda thunk it?
My new Redskins-fan friend and I were bantering back and forth and doing our own style of "mud-slinging" and the last comment I sent her was this lyric from an ever-popular Queen song:
"We are the champions my friend. And we'll keep on fighting 'till the end."
When I sent it, I was in a football frame of mind. But after I sent it, the song started playing in my head and soon found myself in an RA state of mind. I started thinking about the owners of the blogs I follow. My "RA Club" (I was never really in a club before. Hell of a club to be in.) It occurred to me just then that we all are champions.
We are champions of so may things. We are champions of walking across the room, of picking up a coffee cup, of weilding a pen or pencil, of climbing a flight of stairs, of taking a walk with our kids, of walking thru the sandy beach, of weeding the garden, of riding a bike, of cleaning the house, of cooking dinner, of getting thru a yoga routine, of being intimate with a significant other, of hugging a friend...... I could go on and on and on but I think you get the point. We, who have been so unfortunate to be forces into this "club" are champions of doing the everyday things that most people take for granted.
And if it's not bad enough that we have to deal with our own body attacking ourself, we also live witht the fact that he meds we take to combat this enemy may do more harm than good. Our immune systems, in many cases, are shot. Since that is what is attacking us, it has to be stopped. We also have to be mindful of cancers, liver damage, TB...shall I go on? We also live with the fact that RA can potentially cause heart, lung, and other organ damage/failures. Oh happy days.....
All of you non-RAers out there who are reading this.....I have a few questions. When was the last time you were glad you to have the ability to tie your shoes? When was the last time you realized how lucky you are to be able to dial a telephone? When was the last time you felt grateful for being able to get out of bed? When was the last time you were glad that you could clap your hands to applaud for someone or something? When was the last time you felt blessed to be able to walk, run, skip, jump, or cart-wheel? When was the last time you thanked the higher power you answer to for allowing you to live pain-free every day? These and so many more abilities are taken for granted by most people. Simple things that many RAers just can't do. It's not because we're lazy. It's because we honestly can't do it. Below is only my story. There are thousands more like mine, many are much worse.
Within 5 months of my diagnosis I was in a constant state of exhaustion. If I had my way, I would have never left the house. I was unable to do many things, including the following:
- wear my rings because of swollen joints
- write legibly because I couldn't hold a pen or pencil
- pick up small things without excruciating pain
- straighten my left arm past 120 degrees due to an elbow contracture
- touch the palm of my left hand to the back of my left shoulder because of the contracture
- go for a walk with my kids because I could barely walk
- ride a bike
- wear flip flops
- walk barefoot
- twist and bend my wrists
- walk up and down stairs (I did because I had no choice in certain situations)
- hold a glass because I couldn't curl my fingers around it
- pick up a coffee full cup
- pour myself anything
- carry heavy things
- paint my fingers and toes, again due to small joint swelling
The list goes on. If I didn't have to bring my kids to school and go to work every day, I probably would have become one with my couch. But I didn't. Why? For the same reason the rest of us push ourselves to do the sometimes impossible.
No one ever really heard me complain. Why? How long would their sympathetic ears last? Probably not for long. No one likes a complainer.
I never asked for help. It was offered but I didn't ask. Why? I didn't want RA to take my inependence.
So, now for the definition. How does it work out for RAers?
1. We're not looking for a first place trophy in this competition with RA. We're looking to win it by total annialation of this disease.
2. Every day that we fight by any means possible, whether it's tying our shoes, going for a walk, taking meds, do something that RA prevented us from doing before,whatever, we are the winner.
3. We unconditionally support each other and the cause to find a cure for this disease.
4. We fight every single day.
5. we fight because we are warriors.
We fight RA every day with meds, diet, by our blogs and fb pages, by force. Why? Because none of us want RA to win. We will continue to fight this war every day until our enemy is defeated. Why? Because WE ARE THE CHAMPIONS!!!
I've paid my dues Time after time I've done my sentence But committed no crime And bad mistakes I've made a few I've had my share of sand kicked in my face But I've come through
We are the champions my friends And we'll keep on fighting till the end We are the champions We are the champions No time for losers 'Cause we are the champions of the world
I've taken my bows And my curtain calls You brought me fame and fortuen and everything that goes with it I thank you all But it's been no bed of roses No pleasure cruise I consider it a challenge before the whole human race And I ain't gonna lose
We are the champions my friends And we'll keep on fighting till the end We are the champions We are the champions No time for losers 'Cause we are the champions of the world
Monday, July 20, 2009
Wednesday, July 8, 2009
Monday, July 6, 2009
Sunday, July 5, 2009
Friday, July 3, 2009
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
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
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
Wednesday, June 24, 2009
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
Monday, June 22, 2009
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.
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
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
Thursday, June 18, 2009
I found a couple of really cool gluten-free blogs. They are on my list of blogs I follow so check them out! Lots of recipes. I can't wait to try some of them. Over the next couple of weeks I'm going to really go thru the pantry and remove anything with gluten that I used to eat.
I've gotten all milk, casin, and whey infested products out of the house. I'm slowly trying to pull it from the kids' diets too but it's hard. They are cheese hounds. Maybe I can limit it. I have been off of all dairy for a month and a half and I really feel the difference in my body. When I did have dairy to force inflamation, I felt an immediate reaction. Not only did I swell and have pain, but I felt bloated and just gross. My whole insides hated me! I still miss cheese and pizza and Stoney Field yogurt and Abbott's. Oh my God! How am I going to live without Abbott's! And GARBAGE PLATES!!! I could get a hamburger plate with no mac salad. Better yet! I'll make my own! Luckily I can still eat Bottled Hell! No dairy in there!
If you want to be a Non-Dairy Queen, here is a list of some of the tastier things I have had. If you are local, Wegmans carries these but not all carry the yogurt. Lori's and Abundance Co-Op carry all of it:
- BUTTER SUBSTITUTE-Don't use margerine! Try Earth Balance instead.
- YOGURT-I'm not fond of coconut unless it's fresh but So Delicious coconut milk yogurts. They have all the yogurt bacteria.
- SOUR CREAM SUB-There are 3 I've found and they are Sour Supreme, Tofutti, and Follow Your Heart are the best brands
- CREAM CHEESE SUB-I've only found one. Better Than Cream Cheese isn't too bad.
- MILK-I mainly use hemp milk now. The best brand is Living Harvest. The chocolate is divine! If you want to try almond milk I suggest Almond Breeze. For soy, I used good old Eden Soy but it's rare.
- CHEESE-Haven't found a good one yet but Veganrella isn't too bad on homemade pizza. Just don't use a ton. It also has gluten in it so if you avoid gluten, don't bother.
So that's it I think! You can use these as you would the regular dairy product. I've been cooking with them for a long time. My vegan beef stroganoff is YUMMY!!!!! Too bad it's full of gluten! Damn it! :0)
Wednesday, June 17, 2009
I have a friend who's mom has ra and she's really having a hell of a time. I gave her some info. Ihope it helps. Having it makes me feel so much worse for others because now I know what they are going thru.
I was doing some research on gluten and found some pretty interesting info:
Immune responses to gluten, the proteins found in cereal grains are a common cause of an impressive number of diseases. The remarkable fact is that eating “normal”, often-recommended foods can be hazardous to your health. Celiac is the best defined gluten disease.
The classic presentation of celiac disease is chronic diarrhea, with abdominal bloating, sometimes pain, weight loss, iron deficiency and other evidence of nutrient malabsorption. Celiac disease is immune-mediated and should be described as gluten allergy.
People who are diagnosed with celiac disease often feel like outcasts and resent the hard work of avoiding gluten. We have taken the opposite approach and ask a much larger group of people to exclude gluten along with other popular foods as a routine measure of restoring health.
A list of diseases that occur with increased frequency in celiac patients resembles the list of disorders reviewed under our descriptions of delayed pattern food allergy. These diseases include diabetes, thyroid disease, anemia, rheumatoid arthritis, sacroileitis, sarcoidosis, vasculitis, inflammatory lung disease, eye inflammation, cerebellar ataxia and schizophrenia. These and other immune-mediated disease can be linked to gluten ingestion. These associations suggest that people with a tendency to immune hypersensitivity diseases are vulnerable to food antigens that can cause systemic autoimmune disease.
Food for thought.....
Tuesday, June 16, 2009
Monday, June 15, 2009
Sunday, June 14, 2009
I bought the kids a slip-n-slid and they had it out today. It's pretty cool. It has 3 sections and it comes with 3 mini blow-up things that you can use to slide on. It's not as long as the slip-n-slides of my childhood but it also doesn't have the metal stakes to hold it down like mine did. Scott was playing on it with them while I was working in the garden. He told me to come and play but I opted out. I really wanted to but I have this fear of hurting myself. That still keeps me from doing things but maybe it's justified. I don't know.
Took Mackenzie to her first-floor school picnic today. It was great to be able to walk around the grass bare-foot and not limp. I brought a chair instead of a blanket but I didn't have to use it. I was comfy sitting on the ground. Glad I ate before I went and that I brought a yummy spinach salad with apple cider vinagrette. There wasn't much for a non-dairy, non-gluten me to eat. I was talking to a person there and my diet changes got brought up. I was telling her why I'm doing it and how there have been some improvements. She made the comment that since it was working then I didn't need meds and the "arthritis" would go away. I told her that RA isn't like that and I'll probably always have to be on meds. I guess I have to accept that I'll be explaining this for the rest of my life.
Part of me feels guilty for feeling so good these past few days. I feel like I shouldn't be talking about it because I'm goingto upset recent new friends I've made. Since I started this blog I've met a couple of really great people on Blogger. These girls and guy have been a wonderful source of support for me. They are people who I wish could be finding this same success that I may have found. They are wonderful people who are struggling daily with this rotten disease but still find the time and ability to reach out to others. I wish there was a way to thank them! All I can say is that whatever Phizer Corp. has stumbled upon is pretty damn good and I hope that it can help more people with RA, starting with my Blogger friends.
Saturday, June 13, 2009
Friday, June 12, 2009
Thursday, June 11, 2009
I'm trying not to read into it. I know realistically a med can't work that well that quick. So what is it? I think I'll just go to the Spencerport Fireman's Parade and see what tomorrow brings.
1. I've had no dairy.
2. I've cut gluten out 90%.
3. I've had no RA drugs.
4. I've had to have an IUD (sorry guys) and, much to my delight, "Aunt Flo" has been here since May 8th.
5. Pain and swelling have been eever present without RA meds...Advil was a bit of help
6. Number 5 being said, I have noticed a difference without the dairy.
So, as of when I woke up this morning, I had 2 doses of whatever I was given from the study doctor. I also have not had any Advil since Sunday morning.
As I prepared to uncurl myself and stretch out some of the pain and stiffness, I noticed that I had less pain. Whatever. So I stretched. I was anticipating the normal excruciating pain I feel whenever I do this. Not so much pain this morning. Next is the nightmarish of a walk, or rather limp, to the bathroom. I stepped out of bed. No sharp ankle pain. Just a dull throb. Even more amazing...I actually walked to the bathroom without limping or hopping. As I took my socks off ( I hate it when my feet touch when I sleep) I noticed that my ankles were significanlty less swollen then they were yesterday.
Just to explain.....ya know the bones on the outside and inside of your ankles down by your foot? Well mine have been very troublesome for a long time.....long before the diagnosis. Anyways, The soft and connective tissues have been so inflamed that it looked like I had golfballs on the outsides of my ankles and the insides of my ankles looked deformed. I actually was beginning to think that was what was happening until this morning. The insides are not swollen at all and the outsides are about half as swollen as yesterday.
Continuing on, my left elbow seems a little straighter today and less swollen. To my relief the doc told me yesterday that there isn't damage happening yet but the inability to straighten it was coming from the swelling. My joints connecting my fingers to my hand are less swollen. My wrists don't hurt as much.
And this was all before my hot, hot shower.
What does this all mean?
1. I have a "miracle drug" in my possession.
2. I'm having a good day.
3. The ever-scarey "placebo effect" has taken hold.
4. Absolutly nothing.
1. I've had no advil since Sunday morning
2. I've had 3 doses of the study "drug" which may not even be medication.
Wednesday, June 10, 2009
Tonight, despite being in so much agony that I just wanted to go to bed as soon as I got home from work, I took Connor to Spot Coffee to see Break of Reality. They are a group of 3 cellists and 1 drummer who got thier start at Eastman School of Music. They play "alternative" cello. They do covers of metal bands such as Metallica (my personal fav), Slayer, and Helloween. They also write thier own stuff. They are really good. It was nice to get out and have a little fun, although we had to get there an hour early to make sure that I could actually have a chair. Needles to say, Connor was bored but we had good company to talk with. Paula, the director of his school was there along with the former asst. director and her husband.
Talking with the Paula, I discovered that she knows someone who has RA and is on the dairy-free gluten-free diet and she has seen great improvements in her condition. That's definately uplifting. Especially since I miss cheese so much and have not found a tastey alternative.
GUINEA PIG DAY 1:
Today I went for my official first study-drug appointment. I was given 2 bottles of pills. I have to take one from each bottle twice a day. So 2 pills in the AM and 2 pills in the PM. Basically, I could have one of the following combinations in the bottles:
1. placebo, placebo
2. placebo, 5mg
3. placebo, 10mg
4. 5mg, 5mg
All of the bottles are labeled "placebo" so who knows what I have. They said if I have the drug in any combination, I could notice a difference in as little as 2 weeks. Advil is up to me. If I take it, I risk not knowing if the drug is working or not. If I don't take it, I risk more pain. Damned if I do, damned if I don't.
Tuesday, June 9, 2009
Monday, June 8, 2009
While Kelly's blog is fabulous, one other thing that should be mentioned is medication. While there have been great advances in treatments for RA, three facts still remain.....
1. The medications must be done with a "trial and error" mentality. You don't know what will and won't work and how well a drug will work and for how long it will work. You also don't know if maybe you need a combo therapy (more than one drug working together.....I was on 3 just months ago). It could take over a year to find the right treatment.
2. While there are treatments that can be successful, there may also be a price to pay, namely with another illness caused by the RA treatment. In all honesty, no drug we take is without its consequences. While they are very successful, RA treatments are also dangerous, the least of which is liver damage. Let's not mention blood disorders, heart problems, cancers.......If a treatment is giving negative side effects, it will have to be stopped and the patient has to start over again from scratch.
3. Since in RA the body is under attack by the immune system, the meds used to treat RA supress the immune system. So how do you fight a cold with no immune system? You really can't fight it properly. So what can happen? Quite plainly...a common cold could kill you. Is it likely? Maybe not. But is it possible? Yup. Come to my classroom during cold season and see paranoia up close! Yeah, I've had a pneumo-vax and flu shot but it's not a guarantee.
Still, Kelly's post really shouts it out that this isn't your grandparents' arthritis.
Sunday, June 7, 2009
Let me back up real quick. Her son was recently diagnosed with autism and to preserve his health and help him heal, the whole family has gone gluten and dairy free. She showed me so many products I didn't even know were out there. And I frequent Lori's, Abundance, and Wegman's Nature's Market weekly! I guess I really wasn't paying attention.
She gave me lots of goodies to try, which I am very greatful for. And she gave me some advice and suggestions. When my husband became a vegetarian, we kinda stuck out in the family. And then when the kids came along and we raised them the same, well, I know it was a pain but I tried to make it easier. I have to say, I'm glad we aren't the only ones with dietary restrictions who are gonna be at the dinner table! When I decided to try this dairy-free gluten-free thing I did consider just staying home for the holidays. But I'm not alone now! I have a partner in eating! Actually, I have 4!
When we started talkng about the holidays, of course it was focused around what we would be eating. Or, more like what would NOT be eating. No more Christmas delicacies like cardones and artichokes, for every Italian knows that you can't make them right without cheese! And the desserts! I think we both decided that we aren't going to bake cookies this year. That's gonna leave a big hole on the dessert table! Or maybe we'll have to do some modified baking!
Saturday, June 6, 2009
Some of the things I've been reading are so true...the sympathy looks (I mean you Shanley!), the lack of understanding what RA really is because it's not about getting old, not being able to work, the feeling that people are sick of hearing how much pain you are in day after day. I try to be honest when someone asks me how I am. The only thing I can say is if you ask me how I am, be prepared for the answer. We don't have to have a conversation about it but most times it's enough for me to say, "I feel shitty today" and be done with it.
So everyone who may be reading this.....most of us know someone or know someone who knows someone with RA. Just remember these few things:
1. RA is not about getting old.
2. Slow down when you're walking with someone who has RA. Don't try to make them keep
your pace. You should be keeping thier pace.
3. Hold the door!
4. Don't look at them like they are dying.
5. When you ask, how they are, of they need anything.....mean it!
I love all my friends! Everyone has been so supportive and I thank you for that!
Thursday, June 4, 2009
Wednesday, June 3, 2009
Tuesday, June 2, 2009
Monday, June 1, 2009
Sunday, May 31, 2009
Scott and kids are vegetarians. I still eat chicken and fish. I thought we ate pretty good......except for Scott's nightly junk-food munching. Boy was I wrong! I've been looking more and more at veganism and raw food diets. I wonder if that's what I need to start doing. I eat a lot of veggies and fruit and nuts now but maybe that needs to be the focus of my food in-take.
With a 5th family I know being affected by autism, I have been scrutenizing my diet even more. I have stopped milk products all together. It's been about 2 months I think. It was easy until I had to start reading labels. I never realized how much stuff has whey and casein in it. Way more than I realized.
I wonder how much of the disease in the world would just disappear if we all started eating whole foods.
Friday, May 29, 2009
How'd it all start? Quite simply. In January of last year (2008) I noticed that I had fluid on the middle joints of both pinky fingers and both middle fingers. It was odd. The fluid just showed up one day. There was no pain. I did have to wrench my rings off. It was like I had tiny water balloons under my skin. I ignored it for a bit but my sister-in-law Cindy convinced me to go to the doctor. I did go. He sent me for blood work and x-rays. I got a letter in the mail saying that the x-rays were clear of anything abnormal but my sed rate and c-reactive protien were both "slightly elevated". The note also said, "take some ibuprofin until it goes away".
I wasn't satisifed with that response and planned to go back but me nephew was in a serious accident and then Cindy got very sick and died so life got in the way.
I did go back to the doc in July when things finally settled down. The fluid was still there. I hadn't been able to were my rings for months. The doc said maybe it was some arthritis but nothing to worry about. He told me to continue with the ibuprofin and come back to see him after our camping trip in August.
Fast-forward to August......During the drive to the ADK the middle finger on my right hand started to swell and it swelled quickly. The tendons in the palm of my hand were stiff. I couldn't move any part of my finger and I couldn't squeeze my pinky and thumb together. My biggest worry.....how the hell was I going to set up camp??? By the time we got there, my finger had doubled in size and the pain was excruciating. I managed to set up camp.....barely.
The next day there was no change. Actually, the swelling may have gotten worse. We went into Saranac Lake for a little shopping. Scott wanted my to go to the ER but no way was I going to sit in an ER on day 1 of vacation with the kids. One of the shop-keepers noticed my finger and thought I got bit by a spider. I assured him I didn't. He suggested I go to Urgent Care instead of the ER so I did.
We arrived at Mountain Medical and I saw Dr. Pond, who happened to run the place. We talked about the past few months and he was pretty concerned. He first suggested the possibility of RA. He took 7 vials of blood, splinted my finger, and gave me a script for an anti-inflamatory pain killer and sent me on my way.
Later that evening, he called me to see how I was. He said that he got a few blood tests back and my sed rate and c-reactive protien were really high. He called the next day to check on me again. By then the Meloxicam he gave me worked wonderfully and the swelling and decreased significantly. He said more bloodowork came back and that I needed to come pick it all up before I left. He said that I should make an appointment with a Rheumatologist as soon as I got home because my RH Factor was at 149. What does that mean? Well, normal is between 0 and 13.9.
When we got home, I made an appointment with my orthopedic surgeon because by now I was thinking that my regualr doc didn't do too much for me. I saw Dr. G and he sent me to a Rheumatologist. In the mean time, I also got a new PCP because I felt that my old one just wasn't working for me anymore. I take my health very seriously and I didn't feel that he was.
While with her, I was taking Methotrexate, which is called a DMARD or disease-modifying anti-rheumatic drug. Methotrexate is also used for certain types of cancers and it's also a part of "the morning after" drug combo.
Well, after 10 months of that and substandard appointments with the rheumatologist, I have left her and I am moving on to AAIR thanks to Karen. I am going to be starting a study drug in a couple of weeks. I am hoping that it is successful because if not then I have no choice but to go to the biological drugs and that's a whole mess of side effects hat I just don't want to deal with!