Don’t Say That (borrowed from Kendra)

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Borrowed from Kendra’s blog this is a must read!

Thanks Kendra and cure4lupus.org for posting this on your blog. I “borrowed” it because it is so true. I also added a few of my own to it as well. Thanks so much!

Don’t Say That

Some very well intentioned family members and friends of Lupus patients can do and say things that can frustrate and hurt the patient. Here are a few examples:

“Lupus, my cousin has that, it’s not that bad.” – Lupus is very different from person to person and can even change drastically in the same person.

“Feeling pretty good today?” – This can make us feel like we are disappointing you if the answer is no.

“You look like you feel pretty good” – Looks can be deceiving.

“How do you feel?” – It’s not that you should never ask this, we just get it ALL the time, sometimes we just want to be a “normal” person that is not focused on Lupus 24/7.

“It must be nice to not have to work.” – We would not only gladly exchange our illness for work, but those of us who have been disabled by it, miss working and contributing in that way.

“You just want attention” – We certainly don’t want attention for this. A lot of times we get embarrassed by the focus and attention for something not only negative, but something we have no control over.

“You never want to go anywhere or do anything” – Believe us, we wish we could a lot more than you do! Please understand that we just aren’t always capable.

“I heard (…) cures Lupus” – It doesn’t matter how you fill in the blank, just don’t say it. Everybody and their brother has some “miracle cure” Number one we have tried it all already, and number two if it really cured Lupus it wouldn’t be a secret, we would know about it already!

“All you need is…” – More sleep, this vitamin, more exercise, etc. It doesn’t matter how you finish the sentence, just don’t say it. People are constantly offering us unsolicited medical advice. Unless you have a medical degree, we will stick to our doctors’ advice, that is enough to deal with!

Complaining about trivial things – Please use our experiences to learn to value the important things in life! Complaining about stupid, meaningless things can feel like a slap in the face.

Talk only about Lupus – While we do need to talk about it sometimes, we get real sick of it real quick. Sometimes we just want to do something fun and silly and try to forget we are sick for a while.

My adds are:

“Oh, yeah, right, you cannot help me” This implies that we are lazy or incompetent and do not want to be of assistance. In fact, the opposite is true. We were more than helpful when able, and if not able, we need respect as a person with feelings. Do not belittle me.

“You look like you have put on a few pounds” This is one that I get from time to time, more in my past. This implies that I am out of control eating and doingthis to myself. In fact, I take oral and IV steroids that cause me to balloon up each and every time and pointing out the obvious only makes my self esteem hurt. I know I have gained weight and I want to get it off, but I am sick and need these (poisons) meds to survive. Please think before you speak.

The best advice is to follow the patient’s lead. They will communicate what they need and hopefully understand that you are just trying to help even when you say the wrong thing.

ARGHHHHH…reposted but still applicable

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That one word says it all! I have not been well lately, in a flare, and now my back has gone out too! I have to rant about it here though, since my family has seen fit to tell me to quit talking about the pain and buck up and get over it. Hence, the other reason for the one word title.

Apparently, discussing your pain and feelings about it is not allowed. You have to emit sunshine and rainbows and keep the other things in hiding, behind a smile to pretend all is well.  Basically, it means that they are sick and tired of hearing about the issues I am having. If they think they are sick and tired, how do they think I feel? I guess that it is a moot point.

So, like the good little wife and mother I am, I will trudge  ahead, doing my work and not uttering a sound of dissent, or even resting up. In the end, I guess I can relax when I am dead. Yes, this is a pity party in a way, however, it is also a sad fact that those of us with chronic diseases deal with a lot. No one wants to hear about our struggles. No one wants to hear our pain. No one wants to deal with the issues. We are forced to smile and pretend and then we get sicker, because we are trying to push it all back and in the end, it always comes back and gets us. So, the moral of this story is, I will trudge forward, but when I am flat on my back, do not expect me to jump up and continue, because it is the aftermath of the trudging I did when we were all pretending that nothing is wrong.

It is a sad commentary on those of us with lupus or other chronic diseases  when we face this type of behavior in the world, yet we expect a warm environment at home and sometimes, we do not get it. I am thankful today, that I have this blog where I can vent and rant against this type of thing, and hopefully share with others who suffer the same types of problems. In this healthy way, I can get it out and let it go.

Thanks for letting me vent…

Repeat performer worthy of it

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This is a repeat perfomance of a blog I posted a few weeks ago, but it bears repeating because it is a topic all of us with chronic diseases have to deal with on a daily basis. I did add more to it so it is not entirely the same post as before. Please read and understand us better… thanks!

It is just another day here in my life. I have had a difficult week. This flare is really causing me pain in my joints and in my head. I have gotten out and tried to do some things this week but the heat is also my enemy. Yeah, I know, I gripe all the time. For you normal people, it would seem that way. For those of us with these diseases though, griping is our way of letting the anger go, the anger that we have these diseases, they are incurable, and we have to live with them.

This anger we feel, because some people misunderstand our pain for laziness, and think we want to get the attention. That is not true at all! We are genuinely ill and with no cure, we are facing the rest of our lives with uncertainty. The wars raging on the inside of our bodies are not visible on the outside but they are still there, causing pain and discomfort.

So, do not judge us, please try to understand us. We cannot “buck up” and overcome our fatigue, pain and disease. If we do that, we are setting ourselves up for a backlash from our bodies. To a degree we can buck up, but the results are often days of pain following. We have had to learn to listen to our bodies cues, and if it says rest, we rest. If we are able to participate, we do that as well. We make plans knowing that we may or may not be able to follow through with them.

So please, try to understand and do not pressure us to do things or think we are less because we cannot do certain things on certain days. We feel bad enough without judgment from others. You see, stress can tilt the cart over even faster because we are made to feel inferior. Please listen, read and try to use empathy when dealing with us. We want to do the things others can do! We wish we could do things when we want to do them! It just is not possible to do it all the time.

We kick ourselves enough for our own inadequacies, we do not need another person kicking us too.  Thanks for taking the time to read this and hopefully understand a little better why I may not do all things YOU think I should and can do.

UGH

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Ok, so I admit it, lately I have not been blogging. However, the reason are many and also why I needed to be blogging again… a paradox but true. You see, I am in a flare and it has been particularly ugly. That being said, I have also been on steroids again to treat it.

I have been feeling pretty bad. Even with prednisone. No matter what I am taking. It sucks. Big time.

This flare is making me miserable and no getting away from it, it is a bad one for me. I cannot move at times and I lay down and sleep at all times of the day. I am having pain in my joints so bad I cry. I hurt when I drive, my ankle joint hurts. I really have downplayed it but this is a bad one. Add the misery of this heat and humidity, and I feel like never getting out at all.

Many of my fellow lupies have been having issues too, so I am not alone. This disease will not win!It can take my life, but not the living of it!

I know, I am complaining again, but if you felt like I do, you would be crying I tell you! Normal people have no clue how painful it can be just to get up and walk to the bathroom. Simple acts, like getting in and out of a car can bring excrutiating pain in the joints and therefore, are not to be done unless absolutely needed. Fingers throb in pain from the act of typing. The headaches from the prednisone tapering off are horrible! Now, add to that, having to try to act like you are not in pain, and you have my life.

My family is supportive in so many ways. My sons seem to cope better than my daughter, but they get it, all of them. Some days their mom is out and about and having a great day, and other days, you cannot get me out the door. Plans can be made, but only with the disclaimer that I may not be able to do them when they arrive.

I have to try to keep all the doctor appointments in line and make them but if they are not on my calendar, I forget about them. The memory is having issues, not like alzheimers, but all of my memroy, sometimes, odd bits will be forgotten, then reappeaar again. No rhyme or reeason. I hope the neurologist will get to the bottom of it. I have my emg this week, oh joy… and of course, the moving. Gee, wonder why I am so sick?

I am sorry if this is negative, but it is truthful and if I am not truthful, then I am lying to myself.

The bright spots in my life are my grandchildren. They give me a reason to hope, to believe, and to live. I am blessed to have them! I am thankful to Jehovah for them every day. My friends are another of my blessings. I have some outstanding people in my life who help me in so many little ways that they may not even be aware of doing it. They are my heroes and keep me fighting each and every day.

I guess I hope that if someone reads this and is one of the “normals” or people without lupus, they would see that life in our shoes is not pretty, or without substantial pain, but it is lived despite these things. I used to like helping others when I was normal, now I am thankful for those around me who give me help when I need it! I may look like I am not sick, but the war inside my body rages on and it is up to me to decide to have a good attitude or not. I cannot control the disease, however, I cannot let it control me. Yes, it hurts, yes, it is hard to live with, but I refuse to let it win!

I seem to be a little flighty tonight, but that is also what it can do to you. It is called brain fog, and it is a medical condition associated with lupus. This rapering down on prednisone is rough too. Forget about my fat “moon” face and the unwanted weight gain, the fact that the pain returns as you taper down is enough to make you cry! Then the mood swings from the drugs is there as well. It can be up and down and all around and if this is rambling, you can see how it can affect us! It sucks. Lupus sucks.

For today, I am choosing to be happy, and smiling, and loving. If I try hard enough, maybe the pain will give me a few little breaks and I can feel as normal as I can for a few minutes! If not, I will smile through it and wait until I see my neurologist and rheumatologist this week and see what they think… I will keep you updated!