[Karly1964]

:wink2: Hey everyone, I have been around and diagnosed for about 9 months I guess, the meds are what really confound and confuse me. I mean I know why I am taking them and what they are supposed to do, but the side effects really suck. I am weaning off of prednisone because of weight gain, swollen limbs, and the fact that my right side of my heart is having trouble oxygenating my blood making me extremely breathless. I have mastered the methotrexate injections,:wink2: they are really an easy way to get that particular medicine. I haven't been sleeping very well at all, in fact there have been times where I will just be sitting on the couch and fall over, or face forward on the floor. (I've been checked out by a neurologist and cardiologist) I have sleep apnea and have called my GP to see if I can get a different mask because the one I have I end up ripping off after about half an hour. I am hoping that the decrease in prednisone and a new mask may bring me some sleep, the fatique is horrible. My neighbor, here in the apartment building, had the nerve to make a negative comment about my weight gain. I alternately wanted to cry or rip his head off, after all what does he know about prednisone and weight gain, I had explained it but he says I eat too much, which couldn't be farther from the truth, the last thing I feel like doing is eating. My puppy is coming soon, I sign the paperwork for him with my sister on Monday, I hope having him aroound will make me smile and get me a bit more active. There are so maany times when I just want to cry at people's misunderstanding, judging, side effects, symptoms and the sheer lack of sleep. I just had to rant for a while, people around here act as if lupus is like a cold and that I should be the same person, with the same level of activity as I was before. Karly:shrug:

 

[Primrose1960]

Rude and ignorant people

Hi Karly,

Im sorry you are having a hard time with your symptoms etc. but it really makes me angry when I hear about rude, ignorant, uninformed, pre judgemental, insensitive, cruel and brainless people like your neighbour.

Life is hard enough for you with what you have to put up without these stupid and pointless remarks from this excuse for a man. You are obviously a very polite person, but this man has no manners whatsover.:screamin:

I am so angry for you....

We need to have a tough skin in this life to deal with certain people and their negative coments.

Take care:hug:

Primrose

 

[elisabethm]

rude people

snap i had a woman say to me the other day i did not recognise you with the weight you have put on i had just been to school to pick my grandson up i had the collar of my jacket up she said all i could see was the little head and the fat body i could have slapped her it is bad enough that i cant stand the weight gain myself i dont eat a lot if that was the case i would not bother but when you are not fit to exercise that makes it worse i would not stand and tell her that it was the medication that was doing i would not say anything like that to any one it is so rude

 

[marie2]

ewww How can people be so insencative. I hate the weight gain from the prednisone. I am having a hard time sleeping to because of it.
I'm sorry bout what that slim said

 

[JudifJ]

Hi Karly

I sympathise with you. I hate the stares of people when I park my car in a disabled space. I would like them to see me AFTER I've been round the supermarket when I am struggling to keep upright hanging on the trolley!!!
Prednisolone sucks. I've put on about 60 lbs since I started the dreaded steroids (and I was no lightweight before).

I have always told my girls "if you can't say anything nice about someone, then say nothing at all". I go one further and say something nice. You don't know whether the recipient is in need of a boost.

I have sleep apnoea, too. I use the Mirage Quatro mask and ResMed AutoSprint 8 APAP machine. As my machine automatically adjusts to my needs I find it just fine. The only problem I have had with the mask is that I have had some irritation at the corners of my mouth going down my chin (like babies' dribble rash). You have to be so scrupulous in keeping the seal clean.

Hope you can find a mask that suits you as you need a good fit and so get a good night's sleep.

I certainly hope the new puppy brightens your day. He'll keep you on your toes! What breed is he? How old? Look forward to seeing a pic of him.

Thinking of you
Love Judi xx

 

[ShrinkingViolette56]

Rude People

Hi, I'm new. This is my first post. I could use your advice as to how to start a post. I can't find anything to click on, to start a post of my own. Any help you could give me would be greatly appreciated. Thanks.

As for your rude neighbor, I cannot believe how rude people are. I'm overweight and get picked on nearly every time I leave the house. I've refused to go on steroids for that very reason. I've tried to explain to my doctors that I'm already overweight and not that attractive to look at as is. I do not have a pretty face either. I'm manly looking and have often been mistaken for a man. I've even been referred to as a transvestite. People think I'm a man wearing a woman's wig and clothes. The last thing I needed was steroids to balloon me up.

My doctors do not understand my point of view. In the mean time, I do my best to control my Lupus with stress reduction, diet, rest and the right amount of exercise (walking). The stress reduction is the hardest part, since no one in my family believes that Lupus is a real disease. I have zero family support and love.

Do you have good family support and love? If so, that is the best treatment for Lupus. If you have your family behind you, the next time you see that rude neighbor, think to yourself, "I have something that person will never have, I'm loved". Hopefully, God will deal with that neighbor, so you won't have to waste your energy.

I'm so sorry that the world is filled with rude people like your neighbor. People who are not sick, seem to have no clue. They never will get a clue, until they or someone they love, get real sick. We seem to live in a society, that seems to want to get rid of everyone who is not blonde, blue eyed, thin and healthy. The world needs people like us, who are caring and sensitive.

Take care and hang in there. Be strong. I send you love and hugs from the U.S.

 

[halfpintfl]

Hi KARLY, and welcome. People are always going to be rude. The next time that someone say's anything about your weight, say;
"Oh, thank you, I felt like I wanted to go for a new look, so I got some new pills, and they are working great, bye" I bet when you turn around, they will just be standing there with their jaw to the ground. be well.

 

[elisabethm]

thank you halfpint you really made me laugh that is a good one never thought of that answer thank you :lol:

 

[Karly1964]

Thanks Everyone

Hi, I'm new. This is my first post. I could use your advice as to how to start a post. I can't find anything to click on, to start a post of my own. Any help you could give me would be greatly appreciated. Thanks.


ShrinkingViolette56, to start a new post click on the NEW THREAD button on the bottom left hand side of the list of all the threads under a heading, then you should be ok. What gets me about this guy is he should know how it feels to feel sick, he's a diabetic, takes shots all the time and has lost some vision, I have figured out the way he deals with it is to put other people down when he judges their pain to be less than his, he even said today, you only have to take a shot one time a week. Yeah, true but it is chemo and I feel crappy afterwards not normal. Pain is pain no matter who has it or what the cause. I have decided that I will just be around people who are friendly and not judgemental. My sister and her family are supportive as well as some friends and a few neighbors in another apartment building in this complex. this guy has some self-esteem issues, which I have helped with, like he cannot read and I have helped fill out papers and set up his tv's etc. yet he still treats me this way, I guess that's the part that hurts. My pup should be ready to come home after next weekend, not the 16th or 17th the last weekend in February I guess as long as the vet says it's ok. His picture is on this post, at least his one month old photo, I will be getting new ones this weekend. Thanks for the support, Karly

 

[Karly1964]

I forgot

Next Wednesday I will be going to Muncie a nearby city and get fitted for a mask that will work better for me! I am looking forward to some sleep.

 

[halfpintfl]

Hi and welcome to this great site. A few have asked how to start their own new post. Let's try this:
1--get to the first page that says "Message Boards" and slide down until you see a section that fits what you want.
There will be ones like "Not yet Diagnosed" or "Introduce Yourself" or "Symptoms". Click on the one that best suits what you want to discuss.
2--That will take you to a place where you will see a few more lists,go to the bottom and on your left will be a blue button that says "New Thread", click that and you should be good to go. Hope this helped.​

 

[mandy_au]

Hi Karly & All

I too despise these kinds of people! I find lately the more I go out the more I get annoyed at how people behaive toward me in general .. I use a cane to help my mobility now, and find that many people will stare at me, then the cane and still not move out of my way when I have no room to move to a lot of those times ... I loose my balance etc and they walk on by like theres "no flies on them" ... also the other week I attempted the walk to and from my Son's school again, hoping I'd be able to keep doing so and putting less burden on my friends that help by usually picking him up for me ... well, by the time I was at school I were extremely fatigued & in a lot of pain so when one of the parent busy bodies (whom I've never personally conversed with) screams across the school yard "young lady what have you done to yourself?" ... put it this way, it's lucky for him I didn't have the emotional strength to bite his head off!! ... not long after my friend came and sat with me, before I knew it or could control it I was a blubbering mess! ... I can laugh about that man now, I'm sure he felt he had the best intentions, but he certainly lacked any respect or tact!

The weight gain I can relate to also, but the funny part is I used to be underweight .. one of these people who could eat anything and everything & have troubles keeping the weight on all the same ... so now I'm the most ill I've ever been in my life, and people are telling me I've never LOOKED healthier! :rotfl: I'm happy for the cleavage .. but my face is covered with acne scaring & if it gets any rounder I'm gonna have dogs howling at me :rotfl: ... lol, what can ya do?

It's really cool you've got yourself a puppy, you're gonna be giggling a whole lot more!! ... love and laughter ROCK!! :hehe: take good care

 

[rojomi]

People suck sometimes...

Sorry about all the side affects-it seems like almost all drugs have side effects which many times outweigh their intended purpose. As far as rude people-it really is something you never get used to, but with practice I've learned to not let it get to me too much. After all, most of the people who are, I'll never see again, plus their opinions matter not as I don't know or care about them nor do they pay my bills. Guess I grew some thick skin somewhere along the line?
A dog can make an incredible difference in quality of life-I didn't know how much until I got my first (and only) dog as an adult. He was there when nobody else was, the love is unconditional and I've never had a relationship where someone was as sorry to see me go & as ecstatic when I returned as a dog is.

 

[samour]

Karley

We have our moments, My daughter has CNS Lupus that affects her brain and has pretty much all other symptoms of SLE, She just finished her last dose of chemo.

We just got a little kitten last month and it was a wonderful divertion form all the crappy stuff she has went through and this little guy makes us all smile.

Good luck with you new pouch.

Sharon

 

[cispence98]

Hi there!! verhere:
I have been there done that!! :shutup: I mean people are rude how many times have people said things rudely to others and then the person goes home and does something to themselves because of the stupid persons comment,
I mean its none of their business, I don't eat at all either and have gained weight from the prednisone and amitryptoline I take not to mention other meds, I went from 120 to 165 now thats alot I am sure it doesn't help that I am so tired I can barely move so forget the excercise I use to do that is non existant!!:exercise:
I have had to explain it to others to I mean its bad enough I have to look in the mirror and be weighed at the doctors office let alone explain it to strangers, Just love your puppy and take care of yourself its whats inside that matters the outside is just a shell anyone can look good on the outside but what do they look like inside??:scratch:
Take Care:goodvibes: