I've been on the same treatment plan for my RA for 16 months now. I still hate giving myself a shot every week, no big surprise there though.
I feel very blessed that the treatment I'm on is helping so much still. The only RA related complaints I have these days are stiffness in my hands in the morning, and my legs if I sit too long. And since those are my only physical complaints I'd say I'm pretty lucky!
Because of the miracle of modern medicine I am living a completely normal fulfilling life, I can do all the things I could in my pre-RA days. And some days I can almost imagine I don't actually have RA...I just take LOTS of vitamins! :)
I have yet to see any upside to this disease/trial. I just don't think there is. I'm just glad I don't see and feel the downside very often these days.
So that's my update. I feel good. I feel normal and healthy and lucky.
Here's hoping nothing changes, I like this feeling!
Saturday, January 9, 2010
Saturday, December 6, 2008
Me, talking
Don’t keep things bottled up. Talk it out. It feels good.
This is one of the coping suggestions that has been made on several websites, and by doctors. And while it's nice to talk about it sometimes, I find that the more I talk about it the more I think about it and start stressing ad freaking out about all the "what if's". So in reality I try to think about happier things. Because I like to be happy!
But, for the sake of coping...
Medication is helping control most of the symptoms of RA, thankfully. But it's still something I think about everyday.
I get annoyed when I can't do something I think I should be able to, like turning a door knob equipped with one of those darn "kid proof" handle things. (but, lets be honest...what adult hasn't had this problem at least once?!)
I get sad when I'm playing with Avery and have to stop because of random pains, or can't even start because of them.
It's frustrating not knowing from day to day how much, or where, I will feel the pain.
I'm coming up on my 3 month mark for my treatment, at my next appointment is when we're supposed to decide if I keep going on this one, or try something else.
I feel SO much better now than I did 3 months ago, not perfect, but I really don't feel like I should be complaining.
I feel incredibly blessed that this treatment is working so well, I heard horror stories of people going through years of trying different treatments before finding something that works.
So after 3 months, and now being able to walk, sometimes run (if I'm chasing Avery...and not in a game, he's seriously fast when he decides to run away from me!), get off the floor by myself, drive, unbuckle car seats, make dinner, and so many other daily activities, things are really looking up for me.
And I'm finding small things, that although aren't typical exercizes, help loosen my joints that are still tight and make it easier for me to do what I want.
So all in all, things are going well, and I feel extremely lucky and blessed to be doing so well.
I've also been trying to think of positive aspects of this disease...and I can't find any.
BUT...the medication on the other hand...after being sick for a while after starting (and some occasional blah days still), I have lost all my pregnancy weight and am now at the weight I was when Andy and I got married. The weight loss has slowed way down, which is good (never thought I'd say that!), and I'm trying to eat 3 regular meals a day, which after 3 months of a brunch, snack and dinner meal schedule is harder than I thought it would be .
Anyway. Talking does feel good. Even if it is a one sided blog "conversation".
Sorry if this is kind of random.
This is one of the coping suggestions that has been made on several websites, and by doctors. And while it's nice to talk about it sometimes, I find that the more I talk about it the more I think about it and start stressing ad freaking out about all the "what if's". So in reality I try to think about happier things. Because I like to be happy!
But, for the sake of coping...
Medication is helping control most of the symptoms of RA, thankfully. But it's still something I think about everyday.
I get annoyed when I can't do something I think I should be able to, like turning a door knob equipped with one of those darn "kid proof" handle things. (but, lets be honest...what adult hasn't had this problem at least once?!)
I get sad when I'm playing with Avery and have to stop because of random pains, or can't even start because of them.
It's frustrating not knowing from day to day how much, or where, I will feel the pain.
I'm coming up on my 3 month mark for my treatment, at my next appointment is when we're supposed to decide if I keep going on this one, or try something else.
I feel SO much better now than I did 3 months ago, not perfect, but I really don't feel like I should be complaining.
I feel incredibly blessed that this treatment is working so well, I heard horror stories of people going through years of trying different treatments before finding something that works.
So after 3 months, and now being able to walk, sometimes run (if I'm chasing Avery...and not in a game, he's seriously fast when he decides to run away from me!), get off the floor by myself, drive, unbuckle car seats, make dinner, and so many other daily activities, things are really looking up for me.
And I'm finding small things, that although aren't typical exercizes, help loosen my joints that are still tight and make it easier for me to do what I want.
So all in all, things are going well, and I feel extremely lucky and blessed to be doing so well.
I've also been trying to think of positive aspects of this disease...and I can't find any.
BUT...the medication on the other hand...after being sick for a while after starting (and some occasional blah days still), I have lost all my pregnancy weight and am now at the weight I was when Andy and I got married. The weight loss has slowed way down, which is good (never thought I'd say that!), and I'm trying to eat 3 regular meals a day, which after 3 months of a brunch, snack and dinner meal schedule is harder than I thought it would be .
Anyway. Talking does feel good. Even if it is a one sided blog "conversation".
Sorry if this is kind of random.
Tuesday, October 14, 2008
Think Positive!
World Arthritis Day (WAD) was this past Sunday, if I'd known then I would have thrown a massive party...balloons, streamers, cake. I guess I've got next year to look forward to. Woo Hoo! :)
Just kidding though, I would'nt really throw a party.
This year the theme for WAD was "Think Positive", their goal for this year is to acknowledge the challenges that arthritis patients are effected with, but not to dwell on them. They're trying to remind people that there are a lot of positive thins that can help us feel better, and still live a full and active (physically and mentally active) life.
This is a link to the leaflet they have available >>> Think Positive
One of the sections I liked especially in the pamphlet was talking about how knowing you have a chronic illness can lead you to feel angry, depressed, frustrated and helpless at times (quadruple check, on bad days that is!) but that it doesn't have to be that way, there are others we can talk to for support and things we can do ourselves to help us not dwell on the negative effects of RA.
I liked these ideas for helping cope, and I'm thinking in the future I'll take them one at a time and really apply them in my life. It will be good for me to have some positive goals (but really, does anyone intentionally make negative goals...?), instead of just thinking of what I can't do.
• Talk to other people with arthritis
• Talk to those close to you and those you work
with etc.
• Set yourself some achievable goals – to meet up
with friends, join a club, go to the cinema, have
a special meal
• Give yourself rewards / treats
• Take some form of regular exercise
• Make plans for the future – something to look
forward to
Another thing I liked is on the second page 4 people from all over the world shared their thoughts and experiences with having arthritis.
So from Nele in Belgium, this is my favorite part of those "...enjoy every minute without pain. I stop thinking of all the things I cannot do anymore and focus on the things I still can. And that is a lot!"
So that is what I'm really going to try and do. Sometimes it really gets me down and I just feel like throwing myself a pity party. Especially in weeks like this past week where I hurt so bad and just don't feelas capable of doing normal things. I can be grateful that I can walk, and hold my baby, I can be grateful for Andy who helps me whenever he's home, and for Avery who thankfully entertains himself. I am especially grateful that even though I am in pain, it's better than it has been in the past, and even if I'm uncomfortable I can still get things done.
So, here's to making goals and thinking positive!
Just kidding though, I would'nt really throw a party.
This year the theme for WAD was "Think Positive", their goal for this year is to acknowledge the challenges that arthritis patients are effected with, but not to dwell on them. They're trying to remind people that there are a lot of positive thins that can help us feel better, and still live a full and active (physically and mentally active) life.
This is a link to the leaflet they have available >>> Think Positive
One of the sections I liked especially in the pamphlet was talking about how knowing you have a chronic illness can lead you to feel angry, depressed, frustrated and helpless at times (quadruple check, on bad days that is!) but that it doesn't have to be that way, there are others we can talk to for support and things we can do ourselves to help us not dwell on the negative effects of RA.
I liked these ideas for helping cope, and I'm thinking in the future I'll take them one at a time and really apply them in my life. It will be good for me to have some positive goals (but really, does anyone intentionally make negative goals...?), instead of just thinking of what I can't do.
• Talk to other people with arthritis
• Talk to those close to you and those you work
with etc.
• Set yourself some achievable goals – to meet up
with friends, join a club, go to the cinema, have
a special meal
• Give yourself rewards / treats
• Take some form of regular exercise
• Make plans for the future – something to look
forward to
Another thing I liked is on the second page 4 people from all over the world shared their thoughts and experiences with having arthritis.
So from Nele in Belgium, this is my favorite part of those "...enjoy every minute without pain. I stop thinking of all the things I cannot do anymore and focus on the things I still can. And that is a lot!"
So that is what I'm really going to try and do. Sometimes it really gets me down and I just feel like throwing myself a pity party. Especially in weeks like this past week where I hurt so bad and just don't feelas capable of doing normal things. I can be grateful that I can walk, and hold my baby, I can be grateful for Andy who helps me whenever he's home, and for Avery who thankfully entertains himself. I am especially grateful that even though I am in pain, it's better than it has been in the past, and even if I'm uncomfortable I can still get things done.
So, here's to making goals and thinking positive!
Thursday, October 9, 2008
Glimpses, from Silas
Silas gave me permission to post this from and email he sent me,
"One of the hardest things for me has been not having anyone who understands my pain. I went to work one day in a lot of pain a couple of months ago and tried to make it through the day without moving too much. Someone however had put a flash drive in my computer and my boss asked me to take it out and toss it to him. I foolishly did so and once I tossed it the most excrutiating pain shot through my whole body. My boss just said, "What's wrong with you?"
"One of the hardest things for me has been not having anyone who understands my pain. I went to work one day in a lot of pain a couple of months ago and tried to make it through the day without moving too much. Someone however had put a flash drive in my computer and my boss asked me to take it out and toss it to him. I foolishly did so and once I tossed it the most excrutiating pain shot through my whole body. My boss just said, "What's wrong with you?"
There were and still are some days that I just don't feel like getting out of bed, but I do. It's tough, but it's mine. I can't just give it away. It's a trial that we have been blessed with to overcome. There are worse things in life than a having to deal with a lot of pain at times. I am greatful for the Atonement which will one day remove this burden from us. For that reason alone I am able to endure the pain and look forward to a happy future."
I agree with Bub, I'm so grateful for the atonement and the knowledge that we have the one day we will be freed of this trial. Thank goodness for the gospel and the knowledge we have, it buoys me up daily.
I agree with Bub, I'm so grateful for the atonement and the knowledge that we have the one day we will be freed of this trial. Thank goodness for the gospel and the knowledge we have, it buoys me up daily.
In the begining
After a year of mystery aches and pains, a general practitioner who couldn't figure out what was wrong with me, and being on a mild steroid (prednisone) for the better part of the year I was finally referred to a Rheumatologist, who unofficially diagnosed me with Rheumatoid Arthritis (RA) on my first visit, with the official diagnosis confirmed at my follow up appointment. Because I was pregnant at the time of my diagnosis, treatment couldn't be started until after the baby was born, with the chance that if I nursed the hormones in my body may keep me feeling decent enough to put off treatment for a few month. I continued taking prednisone for the remainder of my pregnancy, about 4 weeks after Jack was born I had a serious physical crash, I had to wait 4 more weeks to get into the Rheumatologist to discuss a treatment.
In the few weeks I waited life was pretty hard for all of us, there were several days I had to send my boys away to be taken care of by family and friends. Andy had to help me get dressed, I spent so many days on the couch, I was unable to do simple daily tasks like peeling bananas, walking up the stairs, driving a car, picking up my kids and dressing myself. It felt like the absolute longest 4 weeks of my life.
When I did finally get to the doctor he started me on a very aggressive treatment that same day, which involves taking several pills a day and giving myself a shot once a week. I started noticing a difference after a couple weeks, a minor difference, but at that point any change for the better was exciting! It's been almost 7 weeks since starting my treatment and every week I notice improvements. I still have bad days, and every day I have aches, but it's slowly getting easier to deal with.
That in a nut shell is what's gone on so far.I'm just grateful for everyday that I can get out of bed and take care of my family, play with my boys, walk up the stairs and all the other daily tasks I never even gave a second thought to. I tend to get a little too excited when I can peel a banana or open a jar. Things I don't think anyone ever thinks they'll take for granted!
I'm to the point where I can pick the boys up again, I can play with them on the floor and make dinner. But everyday I think about this disease, I'm lucky enough to have Andy by my side every step of the way. He has been the greatest support for me, he's been so patient and willing to take over caring for the boys on my harder days.
Someday I plan on living close to home, and I may need your help. :) Lucky you!
I thought since Silas and I both will be dealing with this for the rest of our lives you all should be doubly aware! :) I'm also grateful that since I have to have RA, I at least have it now. There are so many treatment options that can make it possible for me, and others with RA, to live normal and fulfilling lives. And everyday that I keep thinking about how much better it's getting the less I think about the uncertainties of the future, which can be a little scary.
I probably won't update this very often, maybe on a weekly basis, or if something "big" happens. But there are links you can click on to learn more about RA. We (I think I can speak for Silas as well) can use all the understanding and support you can offer.
In the few weeks I waited life was pretty hard for all of us, there were several days I had to send my boys away to be taken care of by family and friends. Andy had to help me get dressed, I spent so many days on the couch, I was unable to do simple daily tasks like peeling bananas, walking up the stairs, driving a car, picking up my kids and dressing myself. It felt like the absolute longest 4 weeks of my life.
When I did finally get to the doctor he started me on a very aggressive treatment that same day, which involves taking several pills a day and giving myself a shot once a week. I started noticing a difference after a couple weeks, a minor difference, but at that point any change for the better was exciting! It's been almost 7 weeks since starting my treatment and every week I notice improvements. I still have bad days, and every day I have aches, but it's slowly getting easier to deal with.
That in a nut shell is what's gone on so far.I'm just grateful for everyday that I can get out of bed and take care of my family, play with my boys, walk up the stairs and all the other daily tasks I never even gave a second thought to. I tend to get a little too excited when I can peel a banana or open a jar. Things I don't think anyone ever thinks they'll take for granted!
I'm to the point where I can pick the boys up again, I can play with them on the floor and make dinner. But everyday I think about this disease, I'm lucky enough to have Andy by my side every step of the way. He has been the greatest support for me, he's been so patient and willing to take over caring for the boys on my harder days.
Someday I plan on living close to home, and I may need your help. :) Lucky you!
I thought since Silas and I both will be dealing with this for the rest of our lives you all should be doubly aware! :) I'm also grateful that since I have to have RA, I at least have it now. There are so many treatment options that can make it possible for me, and others with RA, to live normal and fulfilling lives. And everyday that I keep thinking about how much better it's getting the less I think about the uncertainties of the future, which can be a little scary.
I probably won't update this very often, maybe on a weekly basis, or if something "big" happens. But there are links you can click on to learn more about RA. We (I think I can speak for Silas as well) can use all the understanding and support you can offer.
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