So I have been feeling bad this past couple weeks and really bad the last few days. Lucky to get out of bed some days. This evening I went to shower and I couldnt even get out of the shower I had to have my mom help me. She got my wheel chair and wheeled me to my bed. Thankful for a mom who is a nurse! This is how I felt when I first got sick/diagnosed this April. I am so frustrated just when I feel like I am adjusting to my "new" life somthing comes up. My breathing has increased along with the chest pain and everything else. Im so tired of this and woulld do anything to be normal again!
Louters, ver yglad you posted. And yes, you are fortunate to have a loving caring mom who is there for you when you need her. I'm sad to hear you are struggling so much. Other than your recent move, has anything else happened to kick up your symptoms?
I know too well the ache to be who we once were, but this disease makes us re-evaluate our expectations of ourselves, and learn to accept new ways of living, as well as possible, and day by day. I wish you so much to have peace with what you never asked to have placed in your life, and that you are able to find ways to cope and not allow Lupus to take over your life, but instead to be able to co-exist with it as part of who you are right here, right now. I'm in that place with you, and we will both get there.
tons of warm hugs,
Perplexed
Thanks so much for the encouragement! I really do have an amazing mom I love her so much. She took almost 3 months off of work to be with me in the hospital and do all the follow ups! I am truly blessed! They have been trying to get me off of the prednisone and so I dont know if that has to play apart in it or not. As well as I ran out of my plaqunille and cant get a refill till the 13th. So lost ill probably end up seeing my PCP here soon.
I usually deal pretty well. but this past week or so I have been having a harder time. Dont know if its my flaring or what but I have been so emotional. I am either wanting to love everybody or I am wanting to hate everyone. It doesn't help its been snowing all week making it hard to get out.
I have no words of wisdom except to say I understand what you feel.
You are in my thoughts today. I wish I could change everything for you. If I could I would. Know that we love you and are here for you. Getting use to the new normal is a strange thing isn’t it? Since the new normal is always changing on us. It’s just, never really knowing what to expect. My dr. Use to tell me when I was first told I had Lupus, we only know what we know today. I found that so frustrating and totally unacceptable . Now years later. I totally get it.
I'm so sorry you have been feeling so rotten. Your mom sounds like an awesome support. Praying for some easy days for you.
Louters, I am so sorry this is such a bad time for you. In the August 26, 2013 New Yorker magazine, there is an article called, "WHAT'S WRONG WITH ME? I had autoimmune disease. Then the disease had me." By Meghan O'Rourke. If you can find it, read it. I will see if I can post the link. Take care, LupanCatwoman
Lupancatwoman said:
Louters, I am so sorry this is such a bad time for you. In the August 26, 2013 New Yorker magazine, there is an article called, "WHAT'S WRONG WITH ME? I had autoimmune disease. Then the disease had me." By Meghan O'Rourke. If you can find it, read it. I will see if I can post the link. Take care, LupanCatwoman
Remember also that change of the seasons is usually really hard. And this particular time of year not only brings physical challenges for us but also emotional ones as we remember the holidays when we were well and could do so much more. Here is a link to the synopsis of the article by Meghan O'Rouke (the original is only available by subscribing to the New York Times where it appeared): http://www.cortjohnson.org/blog/2013/09/01/whats-wrong-with-me-autoimmunity-chronic-fatigue-syndrome-and-diet-one-persons-stor/ My heart goes out to you..hang in there! Susan
Louters said:
Thanks so much for the encouragement! I really do have an amazing mom I love her so much. She took almost 3 months off of work to be with me in the hospital and do all the follow ups! I am truly blessed! They have been trying to get me off of the prednisone and so I dont know if that has to play apart in it or not. As well as I ran out of my plaqunille and cant get a refill till the 13th. So lost ill probably end up seeing my PCP here soon.
I usually deal pretty well. but this past week or so I have been having a harder time. Dont know if its my flaring or what but I have been so emotional. I am either wanting to love everybody or I am wanting to hate everyone. It doesn't help its been snowing all week making it hard to get out.
Sounds like you need a med adjustment. If you want to back off the prednisone maybe try cellcept. Trying to find the balance can be difficult
Hugs
Louters, I hope today has found you feeling a bit better. I agree with all everyone else posted.
Frustration can be a means towards making positive change in our lives. Chronic illnesses carry something with them across the board - thye make us think, make changes in our lives, and discover wha really matters at the end of each day is the love. It's for lack of a better word, universal. You are an amazing person, and come across as vibrant, intelligent, caring, kind and compassionate, despite your own struggles. There are plenty of non health challenged people who could learn much from looking at you as an example. I only wish I could help you more with the challenges, but know I've got you by the hand, walking this journey with you, as so many others here are.
Hope the weather lets up soon so you can get a break before cabin fever hits too hard. Isolation isn't good for us, unless we choose it for short periods of time to do wat I call inner work like prayer and meditation, stress reduction, or private time to do what brings us joy. I know in my case, coming off prednisone creates an emotional and physical kick back, so please don't be too hard on yourself. It will pass. Your body is adjusting, so be as patient and kind with yourself as you would anyone else. Journaling can help us to get all the yucky stuff out in a safe and constructive manner. I use a program, freeware I got from Cnet called idailydiary to help with this. You can even passcode protect it if you want to keep it private.
hugs to you.
Louters said:
Thanks so much for the encouragement! I really do have an amazing mom I love her so much. She took almost 3 months off of work to be with me in the hospital and do all the follow ups! I am truly blessed! They have been trying to get me off of the prednisone and so I dont know if that has to play apart in it or not. As well as I ran out of my plaqunille and cant get a refill till the 13th. So lost ill probably end up seeing my PCP here soon.
I usually deal pretty well. but this past week or so I have been having a harder time. Dont know if its my flaring or what but I have been so emotional. I am either wanting to love everybody or I am wanting to hate everyone. It doesn't help its been snowing all week making it hard to get out.
Louters,
I am so sorry that you are having a difficult time. Please know that we go thru ups and downs and as you stabilize hopefully you will have more ups than downs. You are very lucky to have someone so knowledgeable to be able to help you. Don't give up hope and believe that you will have those up days as well. Many times change in weather or seasons can cause disruption to your system with different allergens, etc.
We are here for you and in the meantime rest and you will feel better soon, I am sure.:)
Hugs,
DeAnne
Thank you all! I finally broke down and went into the ER thankfully the doc on call was my PCP. So thankful to have such a wonderful doctor. He just looked at me and was so compassionate and understanding! He got me a prescription for Flexeral(sp) for the muscle spasms so I am hoping for some relief on the muscle spasms. As well as some pain meds. to get my pain under control. I am feeling better pain wise but still really exhausted and worn out.
My mom is so amazing! I feel so blessed to have been blessed with such an amazing person. She was so kind and took me in even in the middle of this winter storm. :) Thanks again for all the support, kind words and prayer. it means so much to be able to come on here and read such encouraging words. :)
Sorry that you are having a very difficult time with Lupus. It sucks big time. You are fortunate to have your mom being able to help you. All of us pray to God for just "one day" to feel normal. It will come but not tomorrow with all of the new advances of medication treatment. I have had this for 5 years and I did have four days one year ago that I felt like I was in remission, Then this last Sept another remission like episode for 4 weeks, but now back to the same. Even with winter and cold temperatures it is so hard on the body. Read articles and books about the disease they are a great resource for you.
Then read on changing your diet and adding vitamin supplements. If I do not take my B12 and other vitamins I feel worse.
Hang in there it is going to be a rough road with some good days ahead,
Hello! Dear if you want to CRY it is okay! Stop holding back your emotions -for one the flares is No fun!! We all at some point have to have that extra help , don’t be ashamed to ask for it !! People care and will help BUT you have to teach yourself , that you GOT to help yourself Before others will , try first! Show and tell is the game that many people who say that they are there if you need them ! They just want to see (prove)that you really need their help , which I think is totally selfish on their part? But hey! cry if you got to ,it is okay and no one said it would be easy! Or did someone tell you that? LOL…take care and cry if that is what you want to do!..Bevely
Thanks I really needed that. That is the one thing I deal the most with is asking for help and feeling like I am being a bother when showing my emotions. When I start to cry I always tell my mom I am sorry I am such a baby. She always tells me its ok to let it out but I still feel like a bother. I went from always being on the go and just starting me life as an adult, attending college as a freshman. working and trying to figure out my life to being laid up and depending on people. It took me a while to start asking for help from my mom because I just wanted to do it all. My friends are great at helping but sometimes to much. When I can do for my self I want to do it as I cant always, but sometimes they do it all for me.
Beverly L. said:
Hello! Dear if you want to CRY it is okay! Stop holding back your emotions -for one the flares is No fun!! We all at some point have to have that extra help , don't be ashamed to ask for it !! People care and will help BUT you have to teach yourself , that you GOT to help yourself Before others will , try first! Show and tell is the game that many people who say that they are there if you need them ! They just want to see (prove)that you really need their help , which I think is totally selfish on their part? But hey! cry if you got to ,it is okay and no one said it would be easy! Or did someone tell you that? LOL...take care and cry if that is what you want to do!....Bevely
Thanks! As I was moving I found a book about lupus that was just sitting in a box. Who knew years later I would need it! I am hoping to start reading it soon. I try and eat as best as I can and eat as much gluten free stuff I can. Sometimes I just eat what I can or am able to cook for myself. I don't take any supplements I have been told to try and take fish oil. i am going to be bringing that up with my doc. I am wondering if this flare is caused by the weather. Its like -15 to -30 wiht the wind chill and massive amounts of snow.
Sleepy said:
Sorry that you are having a very difficult time with Lupus. It sucks big time. You are fortunate to have your mom being able to help you. All of us pray to God for just "one day" to feel normal. It will come but not tomorrow with all of the new advances of medication treatment. I have had this for 5 years and I did have four days one year ago that I felt like I was in remission, Then this last Sept another remission like episode for 4 weeks, but now back to the same. Even with winter and cold temperatures it is so hard on the body. Read articles and books about the disease they are a great resource for you.
Then read on changing your diet and adding vitamin supplements. If I do not take my B12 and other vitamins I feel worse.
Hang in there it is going to be a rough road with some good days ahead,
Praying for you...
Hi!, once again, saying that your sorry-lose that!!! I know we do that alot!I have been down that same road before also. But when you stop and realize ,“what am i/you sorry for? Being sick and trying to be as normal like you once was, will only you can fight for yourself !! Awareness of Living with Lupus is saying something is wrong with me at this point of our life and Yes I need the help from whomever will help!” stop apologizing for being sick , show them , friends , family , whoever that you are still the same person! But at the moment you need/want just a little help/support of positive things even if sounds or look crazy to them just ask them to bare with you the road to being back normal is far but when you have positive people there that LOVE You, nothing will feel as Good and Things will get easier to deal with Living with Lupus! You are still the same person from the past just something new going on. Take care and find the comfort first within yourself and God, (if you believe in higher power!)…Beverly L.
Louters said:
Thanks I really needed that. That is the one thing I deal the most with is asking for help and feeling like I am being a bother when showing my emotions. When I start to cry I always tell my mom I am sorry I am such a baby. She always tells me its ok to let it out but I still feel like a bother. I went from always being on the go and just starting me life as an adult, attending college as a freshman. working and trying to figure out my life to being laid up and depending on people. It took me a while to start asking for help from my mom because I just wanted to do it all. My friends are great at helping but sometimes to much. When I can do for my self I want to do it as I cant always, but sometimes they do it all for me.
Beverly L. said:Hello! Dear if you want to CRY it is okay! Stop holding back your emotions -for one the flares is No fun!! We all at some point have to have that extra help , don’t be ashamed to ask for it !! People care and will help BUT you have to teach yourself , that you GOT to help yourself Before others will , try first! Show and tell is the game that many people who say that they are there if you need them ! They just want to see (prove)that you really need their help , which I think is totally selfish on their part? But hey! cry if you got to ,it is okay and no one said it would be easy! Or did someone tell you that? LOL…take care and cry if that is what you want to do!..Bevely
Hello, fish oil supplements are good, eating cod fish has helped me totally!! Try them or the fish! Am trying to limit the intake of pills . I have planned meals to help with this intake . I want to limit some of the pills, it is bad on the liver and kenneys after a time period. Anyway, get into the book that you have always had and share some of the information to us?..Beverly L.
Louters said:
Thanks! As I was moving I found a book about lupus that was just sitting in a box. Who knew years later I would need it! I am hoping to start reading it soon. I try and eat as best as I can and eat as much gluten free stuff I can. Sometimes I just eat what I can or am able to cook for myself. I don’t take any supplements I have been told to try and take fish oil. i am going to be bringing that up with my doc. I am wondering if this flare is caused by the weather. Its like -15 to -30 wiht the wind chill and massive amounts of snow.
Sleepy said:Sorry that you are having a very difficult time with Lupus. It sucks big time. You are fortunate to have your mom being able to help you. All of us pray to God for just “one day” to feel normal. It will come but not tomorrow with all of the new advances of medication treatment. I have had this for 5 years and I did have four days one year ago that I felt like I was in remission, Then this last Sept another remission like episode for 4 weeks, but now back to the same. Even with winter and cold temperatures it is so hard on the body. Read articles and books about the disease they are a great resource for you.
Then read on changing your diet and adding vitamin supplements. If I do not take my B12 and other vitamins I feel worse.
Hang in there it is going to be a rough road with some good days ahead,