I’m sure I’m not the only one here who has suffered from grief…the words people say to us. We know they say these things because they really have no idea what to say and they don’t know enough about our disease.
My most current comments" a lady in Zumba has sjogrens and she still goes to Zumba."
Even though I don’t want to talk about my disease that day I try to explain.
I have UCTD. Tested twice for lupus and had a positive ssa.
I have lots of pain despite taking lots of ibprophin. Doing Zumba will kill me.
Or the famous…'eat more veggies. Yes eating veggies is probably what we need everyday but my immune system has issues its not a vitamin deficiency.
(Although I have been eating more veggies but it won’t cure me)
This is also famous" are you really in that much pain?
Oh I know people don’t quite understand I get that but I was so excited for dinner with a friend and all she could talk about is how people are so much worse off than I am and that I probably could do Zumba. I just changed the subject each time.
Next time ill carry a pamper about what’s wrong.
Anyway feel free to tell me your stories!!!
I too can relate! I have a very good support system of family and friends, however I have 15 year old boy that seems to enjoy saying the most hurtful things. I won't tell specifics, suffice it to say I spent my evening crying and in the worst pain all over and headache. I'm pretty sure this flare up I'm in now has a lot to do with stress from dealing with my son.
I had a former co-worker suggest I do Zumba also. Like a fool, I tried it at home for 10 min (via you tube videos) You can just imagine how that worked out. We know or at least trying to learn what our bodies can and cannot do. We are our own expert...nobody else. We shouldn't even compare ourselves to each other in this support group. :)
Just to make sure: I do NOT think you or anybody else here in our group is comparing themselves with anybody else. We need support and to vent sometimes. That's what I'm here for:)
Christy said:
Aw, that's sad your family did that. I'm sure that made for an interesting dinner.
Thanks for sharing.
Nates tired mom- I agree we can't compare. Hope that's not what people think I'm doing.
When something is bothering me I need to get it out otherwise it will fester.
When my rheumatogist angered me I believe that set me back too. I was so stressed and that lead to tightness and more pain.
Oh I'm sure you were in pain after Zumba. After I tried it again my body wasn't happy.
I'm not paying money just to go and not move lol.
Wow I hope your son can soon sympathize with you:(
Hugs to both of you.
Yeah!! That’s what it mean!!!LOL
I relate also. And unfortunately it’s hard for me to not feed off of others comments and actions. I’m better but it still can cause me stress and fester in my head. I do come from a large family, lots of brothers and sisters but its like everyone just ignores my illness. I have been on permanent disability since 1993 and in and out of hospitals for months at a time, on dialysis for 3years. In 2010-2011 I was in the hospital and nursing home for 5 months and never got a phone call, visit or even a card from a single one of them. I had to have a finger amputated (2 surgeries) and no one ever mentioned it. I don’t understand it. The most hurtful was when in 2010 right before I had to have the finger removed my older brother came to stay with me from May- Sept. he’s rather demanding and I ended waiting on him hand and foot…he has the nerve to tell me to leave the sympathies for people that really have to fight cancer and lupus because I don’t have either one of them! All because I try to act as “normal” as possible…
I have never told anybody that but it has been a terrible pain in my heart ever since.
~Maré
I am glad you shared. Sometimes doing that is the first step in dealing with that pain. The hurt I have held in causes me physical pain. I pray you have at least one person in your life that you can be open with. This group has given me some release and I hope it does the same for you. Gentle hugs.
Flutterbymare said:
I relate also. And unfortunately it's hard for me to not feed off of others comments and actions. I'm better but it still can cause me stress and fester in my head. I do come from a large family, lots of brothers and sisters but its like everyone just ignores my illness. I have been on permanent disability since 1993 and in and out of hospitals for months at a time, on dialysis for 3years. In 2010-2011 I was in the hospital and nursing home for 5 months and never got a phone call, visit or even a card from a single one of them. I had to have a finger amputated (2 surgeries) and no one ever mentioned it. I don't understand it. The most hurtful was when in 2010 right before I had to have the finger removed my older brother came to stay with me from May- Sept. he's rather demanding and I ended waiting on him hand and foot....he has the nerve to tell me to leave the sympathies for people that really have to fight cancer and lupus because I don't have either one of them! All because I try to act as "normal" as possible...........
I have never told anybody that but it has been a terrible pain in my heart ever since.
~Maré
I can relate, but now feel judged by other people w/ lupus for decisions I have made. The meds made me feel so much worse so I am down to Advil and migraine meds. I joined a support group who turns out to not care for that choice. So much for support.
Thank you Christy, hope your husband stays in remission. Plaquenil helps somepeople, but made me very sick and I gained 20 lbs on it only a month. Between running to the bathroom and extra weight on my all ready stressed joints I decided to stop taking it. Dr wants to talk other meds too, we’ll see what happens. Good lunch to you!
Christy,What a great post..! When i see all your responce's i see a little bit of myself in each and every one of them.
I gained soooo much weight in a short time span and people can be so mean(even strangers)
I am getting a T shirt printed..''Im NOT fat,i have lupus''.LOL.
Thank you, Christy.
Christy said:
My husband is also judged by his decision to stop taking his colitis meds.
Two meds they tried sent him to the hospital.
The last one, humera sent him into remission thank goodness but he stopped it because of awful migraines and no amount of pain meds would help.
So I get it. I understand they help but sometimes the risks are scary.
I’m fighting not taking plaquenil. It’s known as being mild but when I’m on it my eyes feel awful.
I’ve only been on it a couple weeks but it made me feel awful.
Had to fight with the rheum about this. Called my dr and told him I want a referrel to a diff rheum.
I got a call the other day that they want an appt with me to discuss diff meds.
Meds are scary and I believe we know our bodies the best.
Nates mom,
I SOOO understand about the son. He was about age 15, I had not been diagnosed yet but had been incredibly sick very often. "You just want everyone to feel sorry for you!". Other moms do....whatever it may be. You're lazy. Sound familiar? The worst are the swear words (my older son, who witnessed the decline of my health) has never said anything remotely like that. In fact when my husband is out of town he comes and stays with me, and when he doesn't he calls me at least 2 times a week and we speak for at least an hour every time.
I have made a conscious decision to ignore the ignorant, inform those that ask, and not allow it to be the center of my life. If I can't make it to an event, I simply say I am having a bad day without getting into specifics, as no one not going through this disease could give me anything but advice that would make me angry or sad.
It seems to be working. I have found myself closer to members of my family that had drifted and my husband is wonderful...although no one wants to hear someone do nothing but complain. Therefore, if not asked I don't bring it up. It has been great for keeping my stress levels down. No one deserves to live rent free in my mind.
What a great discussion, Christy.
Hugs,
DeAnne
nates tired mom said:
I too can relate! I have a very good support system of family and friends, however I have 15 year old boy that seems to enjoy saying the most hurtful things. I won't tell specifics, suffice it to say I spent my evening crying and in the worst pain all over and headache. I'm pretty sure this flare up I'm in now has a lot to do with stress from dealing with my son.
I had a former co-worker suggest I do Zumba also. Like a fool, I tried it at home for 10 min (via you tube videos) You can just imagine how that worked out. We know or at least trying to learn what our bodies can and cannot do. We are our own expert...nobody else. We shouldn't even compare ourselves to each other in this support group. :)
Mare,
We KNOW you are not faking it. One of the worst aspects of this disease is the fact that many of the symptoms aren't visible. As they say you can choose your friends, but not your family. Have you looked for a support group in your area? If you cannot count on your family you need to have someone, perhaps even a counselor.
I wish I was close enough to give you a big hug.
Virtual Hugs to you,
DeAnne
Flutterbymare said:
I relate also. And unfortunately it's hard for me to not feed off of others comments and actions. I'm better but it still can cause me stress and fester in my head. I do come from a large family, lots of brothers and sisters but its like everyone just ignores my illness. I have been on permanent disability since 1993 and in and out of hospitals for months at a time, on dialysis for 3years. In 2010-2011 I was in the hospital and nursing home for 5 months and never got a phone call, visit or even a card from a single one of them. I had to have a finger amputated (2 surgeries) and no one ever mentioned it. I don't understand it. The most hurtful was when in 2010 right before I had to have the finger removed my older brother came to stay with me from May- Sept. he's rather demanding and I ended waiting on him hand and foot....he has the nerve to tell me to leave the sympathies for people that really have to fight cancer and lupus because I don't have either one of them! All because I try to act as "normal" as possible...........
I have never told anybody that but it has been a terrible pain in my heart ever since.
~Maré
Wonderful response, Christy.
I believe that sometimes we have to ask for help and there is no shame in that.
I also think that knowledge is power! If you can get family members, especially children educated about the disease or even willing to go to counseling as well it may mean the difference in so many areas of your life.
My doctor actually insisted that my husband come with me to my appts as I am still not at the point that I can accurately relay what is happening or remember to take all of my meds. Lucky for me my husband is willing to do it and has agreed to go to all docs with me.
Thanks again for starting this post.
DeAnne
Yes ! Having someone there is a comfort for me. My oldest son has been going with from the very start-it really make a world of difference. Trying to remember things to rely back to family that ask questions about the situation , my son let them know something’s to a point that some are like wanting to go with me , or they want to be tested also. That is so beautiful to me…Beverly L.
whathappensinvegas said:
Wonderful response, Christy.
I believe that sometimes we have to ask for help and there is no shame in that.
I also think that knowledge is power! If you can get family members, especially children educated about the disease or even willing to go to counseling as well it may mean the difference in so many areas of your life.
My doctor actually insisted that my husband come with me to my appts as I am still not at the point that I can accurately relay what is happening or remember to take all of my meds. Lucky for me my husband is willing to do it and has agreed to go to all docs with me.
Thanks again for starting this post.
DeAnne
Hi, remember that children understand things better than grown-ups!! They might not know exactly what it means but if you let them know you are sick and you can't do some of things the ways you use to do, and that he or she has to help you at some moments to do things, am sure that your 7yr. old will do a good job!! My granddaughter is a very good helper and is helping her brother whom is 2, to help me also , now that is a beautiful sight to see....Beverly L.
Christy said:
De Anne, thanks and what a good idea to have your husband come too.
Last time my husband came the dr said after Medrol do u still have shooting pains and I said no, my husband remembered and said yes u do.
You are right it is good to educate family and children.
I haven't told my 7 year old much. Because I used to chase her and run with her she forgets I can't do that right now. When she asks why I just keep telling her I have pain.
I'm not sure what else to say.
I do worry since my husband and I have autoimmune that she's next.
I'm looking for signs and haven't seen any. Maybe since my hub and I r 35 it won't hit her until later or maybe never.
Beverly that is beautiful. Christy, I am truly praying that your daughter doesn't suffer from any sort of autoimmune. There are some books on amazon that I found while looking for other books regarding chronic pain that are geared toward children. Please share if you find some that look good.
DeAnne
Hello, prayer is a all day thing!!! Even when am here online…Beverly L.