"LIFESTYLE MODIFICATIONS"
This is what they say I need to do to feel more comfortable. I have a few problems with this as it does not fit in with my family and life as it is.
"Gentle" exercise: My energy has been zapped by my evil archenemy "RA" it leaves no room for "gentle" exercise. Also, I have 2 boys and "gentle" is not in their vocabulary. My one year old wears me out fast. Chasing him is enough to make me cry (and laugh because he is a joy).
"Rest as needed" again this is something that is hard to modify. I work 47 hours a week, sometimes more. I need a job to keep a roof over my families head. Work does not allow me to "rest as needed". Neither does my husband or kids. They cannot comprehend the need for Supermom needing help all the sudden.
"Pace yourself" Don't try to do it all! LOL! I have to do it or no one else will. I do not have time to "Pace Myself" or I will not do it.
"Reduce Stress" Really? I wish. Everyday is a trial. Everyday is another stress. Reducing stress? I try to breathe, I try to think is this going to matter tomorrow? Is this worth feeling this way?
My Pain brings more stress!!!
"Sleep" Well I try and try and try to get enough sleep and I can't. I toss and turn as after a short period on my left side I have to flip to my right, as I flip my knee or shoulder catches bringing more pain. Then I start thinking what I need to get done the next day, decide when it would be best to do things as some are easier at different times of the day. Then I lay there thinking about this thing that is taking my life over. And well lets just say Slumber land does not come easy.
I am sure that all these would help. Yes I am not debating that. It is just that most of these take a lot more energy than I have or are not possible in my life currently.
Bottom line...I get out of bed everyday in pain, tired, and hoping to get through the day without everyone noticing that I am miserable. I do this for my boys. Currently. I would do anything for my kids and if fighting my own body to get out of bed each day is what I need to do I will. I only can hope that someday I will do it for myself too. That I will not feel the need to wallow in it. That I will be able to once again jump out of bed and think Today will be great!
So until I can figure out a way to make these "modifications" happen I will continue to make the changes I can and hope that one day I can do more.
Tuesday, October 25, 2011
Saturday, October 15, 2011
New Meds, New Pains, New Struggles and Same OLD Grumpiness!!
Started a new infusion drug last week. Decided to go with Actemra. Hoping this one helps more! So far I have not been able to cut back on the prednisone but a trying to stay positive that it will work!!
New symptoms and pains pop up at every corner. When do they stop? New Pains this month include my shoulder popping out of socket whenever I reach, or stretch with my right arm. Which is frequent! Every time I pick up my son, every time I grab a bottle, even picking up something small, it pops. Then it is excruciating pain! It works its way back in but is constantly sore and I can not lay on it or move it much! I mentioned it to the rheum doc and his reply was "oh it is probably just your RA, if you want I can give you a cortisone shot" Really, more shots??? Crap!! Any feelings out there on this? Is this something that will go away once my RA is under control? Does RA ever get under control?? Each time I have infusion I am the youngest one in the room. I always am next to a chatty older lady who tells me that she has been on her meds for 6 years and is loving it. I hope I get that way! I guess once you get over all the anger, and confusion you can be more optimistic. I hope I get to that point soon! I was always the optimistic person. That has changed and I hate it.
Prednisone continues to help me move, and help me gain weight! I have never been so hungry. Not even when I was pregnant! It also is putting white bumps (maybe calcium deposits) on my skin. My hands, back and shins are the worst. Most you cannot see but if you run your hand over them it feels like sandpaper. My husband will not rub my back saying it is disgusting. That does not make me feel so hot. I didn't ask for this and am trying to survive and live day by day and hopefully one day can once again feel good, want to laugh and dance. I have lost my fun. RA SUCKS. I am too tired to attempt fun.
I am starting to feel like even if I do start to feel relief something new will just come to the forefront. In the last month I have been struggling with support, depression, pain, understanding and much more. I am sure all you out there have been on that page before or are currently. Any Advice??
Somethings I have been struggling is sharing my difficulties with my family and friends. I don't know how to answer "How are you feeling" It also feels like some close loved ones just ignore it, I have even noticed it is a topic they steer away from, or even have stopped calling. I am not sure how to fix things. I also need to talk to my 8 year old about the disease and am unsure what he can understand and what is too overwhelming. I hate missing out on running around with him, wrestling with my boys, going on walks, skipping, dancing, and goofing off. He needs to know I want to. He needs to know that I love him and the things I stopped doing are not because of him. I do not want to always have to say...I don't feel well baby" I don't want to be the boring parent!! :) I am supposed to be the fun one!
I struggle with my feelings and depression. I probably should see a therapist about the feelings and anger I have about the disease and how it is changing my life so much. I probably should get on an anti-depressant but dang, I am on soooooo many meds I do not want to add more! I also already have medical bills adding up and do not need to keep adding more! However, my family is struggling. My marriage is struggling. I do not know if it is because I am not the same person anymore. If it is because I was the strong one and am now wavering. If it is because I am a grump?? Or is it things that have nothing to do with my RA? It is hard on us all.
Staying positive in all my grumpiness is not an easy task! All I can do is go day by day. Hug my boys while I still can no matter how it hurts. Watch them smile, laugh and grow. Learn more and Live more. Once I find a new job with less hours I would like to find a support group or even just visit the arthritis foundation in Denver. Meet more people like me and hopefully find a medicine that works! I hear so many stories of kids with JRA and remind myself how hard that has to be and to take their strength and positive energy and use it, learn from it and hope that I will!
In the meantime, I will continue to try to focus on staying positive, understanding the disease, figure out how to share with my family, and hopefully get back on track!
New symptoms and pains pop up at every corner. When do they stop? New Pains this month include my shoulder popping out of socket whenever I reach, or stretch with my right arm. Which is frequent! Every time I pick up my son, every time I grab a bottle, even picking up something small, it pops. Then it is excruciating pain! It works its way back in but is constantly sore and I can not lay on it or move it much! I mentioned it to the rheum doc and his reply was "oh it is probably just your RA, if you want I can give you a cortisone shot" Really, more shots??? Crap!! Any feelings out there on this? Is this something that will go away once my RA is under control? Does RA ever get under control?? Each time I have infusion I am the youngest one in the room. I always am next to a chatty older lady who tells me that she has been on her meds for 6 years and is loving it. I hope I get that way! I guess once you get over all the anger, and confusion you can be more optimistic. I hope I get to that point soon! I was always the optimistic person. That has changed and I hate it.
Prednisone continues to help me move, and help me gain weight! I have never been so hungry. Not even when I was pregnant! It also is putting white bumps (maybe calcium deposits) on my skin. My hands, back and shins are the worst. Most you cannot see but if you run your hand over them it feels like sandpaper. My husband will not rub my back saying it is disgusting. That does not make me feel so hot. I didn't ask for this and am trying to survive and live day by day and hopefully one day can once again feel good, want to laugh and dance. I have lost my fun. RA SUCKS. I am too tired to attempt fun.
I am starting to feel like even if I do start to feel relief something new will just come to the forefront. In the last month I have been struggling with support, depression, pain, understanding and much more. I am sure all you out there have been on that page before or are currently. Any Advice??
Somethings I have been struggling is sharing my difficulties with my family and friends. I don't know how to answer "How are you feeling" It also feels like some close loved ones just ignore it, I have even noticed it is a topic they steer away from, or even have stopped calling. I am not sure how to fix things. I also need to talk to my 8 year old about the disease and am unsure what he can understand and what is too overwhelming. I hate missing out on running around with him, wrestling with my boys, going on walks, skipping, dancing, and goofing off. He needs to know I want to. He needs to know that I love him and the things I stopped doing are not because of him. I do not want to always have to say...I don't feel well baby" I don't want to be the boring parent!! :) I am supposed to be the fun one!
I struggle with my feelings and depression. I probably should see a therapist about the feelings and anger I have about the disease and how it is changing my life so much. I probably should get on an anti-depressant but dang, I am on soooooo many meds I do not want to add more! I also already have medical bills adding up and do not need to keep adding more! However, my family is struggling. My marriage is struggling. I do not know if it is because I am not the same person anymore. If it is because I was the strong one and am now wavering. If it is because I am a grump?? Or is it things that have nothing to do with my RA? It is hard on us all.
Staying positive in all my grumpiness is not an easy task! All I can do is go day by day. Hug my boys while I still can no matter how it hurts. Watch them smile, laugh and grow. Learn more and Live more. Once I find a new job with less hours I would like to find a support group or even just visit the arthritis foundation in Denver. Meet more people like me and hopefully find a medicine that works! I hear so many stories of kids with JRA and remind myself how hard that has to be and to take their strength and positive energy and use it, learn from it and hope that I will!
In the meantime, I will continue to try to focus on staying positive, understanding the disease, figure out how to share with my family, and hopefully get back on track!
Monday, October 3, 2011
First 9 months
I am catching up on the last 9 months with the blogs. I should of started this earlier. I have had it all locked up. My treatment began with Enbrel, it is a sure click pen to inject yourself with the medication every other week. I have to say that took some leading up to. I am impressed with diabetics who have to do it daily. I struggled to get the guts up to do it, breathing hard and squealing like a little kid. It did not last. I had baseball size welts around the injection site. My body did not agree with it. They switched me to Humira.
12 weeks later and no relief! When I first saw the Dr in Jan and he said we should have me feeling better by summer my first reaction was...WTF! Summer is like 5 months away!! Now it is September and I wish I had felt better by summer! I miss out on so much with my kids it really breaks my heart. I try to do everything I used to with them but a day at the pool is no longer something I can do. If I go for more than an hour and half I am useless for the rest of the day!!
I started Orencia in may. I still take prednisone daily, along with piroxicam. It seemed at first that the Orencia could possibly work. After two months I had a little more energy and was thinking positively. I took half my prednisone on my day off to see if I could do it and by 3 I was immobile.
The only thing getting me through day by day is prednisone. The irony of it is that it does other terrible things to my body so I guess I go with the lesser evil and continue taking it! I am on my 5th month of Orencia. My RA Doc is going to switch it next month. I have no relief and am growing tired of trying to find the "right" medicine for me.
I currently have to decide between rituxin and actemera. Rituxin looks to have bad side effects. I do not really need any other diseases!! Any one out there have a suggestion??
I have bad days and good, I try to stay positive. It is hard! I get tired of putting on a front! However, it could be a lot worse! Right??
When family asks "How are you feeling today?" I know they want to hear Good, or at least better. So I do. Its not true but do I want to really say...Today I have stakes stabbing my hands and feet, it hurts to move, I can barely type. I can hold my 1 year old for maybe 2 mintutes...I have trouble sleeping and feel exhausted all the time.....Do they really need to hear that? Do I really want them to be like oh geez, always complaining.
That is what the hubby says. That I complain too much about pain. I thought he was the one person I could be honest with. I work 47 hours a week, take care of my 2 kids, clean, make dinner, and overall do too much. I would feel better if I did less but if I do not do it who will? Last week I asked for some help getting some stuff done. The reply? Oh I don't feel good, you can do it. I tell him it hurts to move my fingers and hands right now, and he says....."You should be used to the pain by now"
Really?? That is my support. This blog is turning off the subject but I guess I needed to get that off my chest! I feel alone. It is sad when the 2 comments I got from my last blog picked me up and made me realize what I cannot find with my family. It sucks. Thanks for the comments.
12 weeks later and no relief! When I first saw the Dr in Jan and he said we should have me feeling better by summer my first reaction was...WTF! Summer is like 5 months away!! Now it is September and I wish I had felt better by summer! I miss out on so much with my kids it really breaks my heart. I try to do everything I used to with them but a day at the pool is no longer something I can do. If I go for more than an hour and half I am useless for the rest of the day!!
I started Orencia in may. I still take prednisone daily, along with piroxicam. It seemed at first that the Orencia could possibly work. After two months I had a little more energy and was thinking positively. I took half my prednisone on my day off to see if I could do it and by 3 I was immobile.
The only thing getting me through day by day is prednisone. The irony of it is that it does other terrible things to my body so I guess I go with the lesser evil and continue taking it! I am on my 5th month of Orencia. My RA Doc is going to switch it next month. I have no relief and am growing tired of trying to find the "right" medicine for me.
I currently have to decide between rituxin and actemera. Rituxin looks to have bad side effects. I do not really need any other diseases!! Any one out there have a suggestion??
I have bad days and good, I try to stay positive. It is hard! I get tired of putting on a front! However, it could be a lot worse! Right??
When family asks "How are you feeling today?" I know they want to hear Good, or at least better. So I do. Its not true but do I want to really say...Today I have stakes stabbing my hands and feet, it hurts to move, I can barely type. I can hold my 1 year old for maybe 2 mintutes...I have trouble sleeping and feel exhausted all the time.....Do they really need to hear that? Do I really want them to be like oh geez, always complaining.
That is what the hubby says. That I complain too much about pain. I thought he was the one person I could be honest with. I work 47 hours a week, take care of my 2 kids, clean, make dinner, and overall do too much. I would feel better if I did less but if I do not do it who will? Last week I asked for some help getting some stuff done. The reply? Oh I don't feel good, you can do it. I tell him it hurts to move my fingers and hands right now, and he says....."You should be used to the pain by now"
Really?? That is my support. This blog is turning off the subject but I guess I needed to get that off my chest! I feel alone. It is sad when the 2 comments I got from my last blog picked me up and made me realize what I cannot find with my family. It sucks. Thanks for the comments.
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