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Life With Lupus

How do you explain to people what Lupus is and what it means


#1

How do you explain to people what Lupus is and what it means
to you???

Personally, I say “My immune system is on hype-drive. Meaning that my good cells are being attacked all the time. So when I get “sick” {which is often} I stay “sick” longer and then the average person. My kidneys and liver are being affected, as well as my joints {every single one of them} hurt, sometimes they become swollen and red. Everything hurts, especially my hands feet and spine. My lymph nodes are general inflamed sometimes they swell and I get lumps.”

People are amazed that you have more lymph nodes than you realize. Not just in your neck, but under arms, abdomen, ect. I also tell them that, “I can be fine one day and look like a six month cancer patient the next. I get phantom fevers all {normal is 97.7…so 98.6 is low grade fever for me}. There are times when I get itchy all over or just in isolated areas, with hives; sometimes. Especially my face when I get the Lupus Butterfly. I now {have a pyloric channel ulcer from nsaids {I use to have a rot gut…could eat anything, never bothered me. They are also supposed to heal in 3-6 months,{mine has not}.

I use to be a very happy, active person….now I am on two anti-depression medication and still have bad days. I am unable to do the things I use to. I cannot lift/carry heavy items {15 lbs. or more, sometimes less}. I use to work out, run, swim, ect. Now, it is all I can do to stretch, do some light palates, light yoga, and maybe walk. Now I cannot make plans in advance, because it is a sure thing I won’t be feeling well.

What I can do is try to stay positive and support other people. Show them that I may have Lupus but I still can have friends and be a source of knowledge, hopefully be an inspiration, and teach others. I am constantly looking for new information regarding all auto-immune system disorders, and provide as a source of information to others {on all subjects}.

I can still be a loving Spouse and Mother; albeit sometimesit is from the couch or bed. I am an excellent cook, and meticulous house keeper. I love to garden, listen to good music, and read. It may take me longer, but still I can do it. Now if I overdo it, I pay for it! There are times where I do overdo it because it is necessary; as I see it! There are also times when things just don’t get done or are delegated.

My life has definitely changed quite a bit. I never leave the house without pills in tow,
and it is only for short excursions. I have been in a constant state of flare for over two years, sometimes so bad I am bedridden, others just seem like normal days{for me}. I live with some sort of pain or another.

I have a wonderful Doctor who believes in both Western and Eastern
{Holistic} medicine. She has been my partner in combating this thing(s).
However, I just found out this week that she would prefer I find a
Doctor more in my area, as she is in Michigan where I use to live. Which is very understandable to me as she is 2 ½+ hours away. That is only when the
weather is good and no snow. I will miss her greatly, and have looked in this
area for a D.O., Internist, and/or a Rheumatologist. I do not want to go to a pain management doctor. So far not much luck, well none actually. As many of you may know from your own experience it is hard to find a good Doctor. Plus I am not the easiest patient to have either.

Anyways that is my piece for now….I look forward to hearing yours!

Be Blessed….

Melissa


#2

Well, I kinda look at it the same and explain it the same. I had read somewhere that vasculitis is called a "hurting disease", I kinda think I am suffering from some sort of disease like that, which I know it is related to Lupus, but years ago when my Dad brought me to the Hospital for Special Surgery/Cornell at about the age of 18 ish, I was told by a Rheumy. there after a days worth of consultation and reviews of my tests, that basically as I was not "textbook", not a pos. ANA, but I did have low C3 & C4 complement levels, Anticardiolipin/Antiphospholipid Antibodies, which cause bad livideo reticularis on my legs and arms (now), I had a biopsy of my thigh above knee to look for vasculitis at that young age, which was neg., but I still think that Dr. in NY was right he said, "You have some sort of Collagen Vascular Disease, I think that narrows it down, right? "Lupus Like" is what I have heard too...Lupus is that. Anyway, man I made that long, but the point I am at is I kind of describe it to others by "My mom had Lupus" she died at the age of 47 from a terrible death, I was 14 and now i seem to be suffering from from the same, but also different. I am different than her, I don't have exactly the same symptoms, but WE BOTH HURT! SO what I am getting at is I say "I HURT ALOT" it is so hard to believe, but I feel sick & tired and to be honest I am sick & tired of being sick and tired. I also as Melissa, have been in the "forever" flare! It is horrible, I am so tired of waking up each day to pain. I pray everynight as I lie in bed and pray for tomorrow to be different, but to no avail it is not. I get angry & I grieve what I was, but I have found an inner peace within myself that I will be OK. I can't sit & worry of what I used to do, I need to start thinking of what I can do. I have been without treatment for too long and I see blue skies as my clinic appt. is Jun 1st, so I can't wait! That is what I have been saying latley, I am OK, I HURT , I am TIRED & I get wiped out when I do the littlest thing, BUT I will be OK!

And you know what, we will all be OK, we all have support, if not from others, from each other here. Stay positive and when people ask simply say I have Lupus, it is an autoimmune disease, my body looks at itself as a foreign thing and attacks itself. Basically that is what happens. That is why it takes us longer to get better from any other illness because our immune system is too busy attacking me and wreaking havoc on my body!

That's all, that is how I narrow it all down. Good Night My Friends! As always I wish you all well! {{HUGS}} Suzie :0)


#3

It is hard to find a doctor. Most of the time I get told that I am to complicated. I don’t want to go to a pain management clinic either. My ra
Rematologist is 1 hr away.


#4

Suzie...

I get it and thanks for sharing. I too am sick and tired of being sick and tired! I am also tired of explaining it to people that I may look fine but feel misersable. I am fortunate that I have a partner that has seen me at my worest, and gets it. He and my son both are some of my biggest champions!

Kim....

I would welcome only an hours drive to see another Doctor that I would be able to work with. I really do dread this new adventure! I just don't feel like I have it in me. But I know that I have all of you to turn to and you get it!

Thanks to All....

Be Blessed...

Melissa


#5

So True! You really did speak so much of what we may feel, but can’t say to others! People can’t always totally get what we are going through, for, they do not have the same! As we cannot fully understand what people with other illnesses “actually” feel. BUT, we can with open mind and hearts, listen & most of all be their friend. Because life is a lesson and the one thing I have recently been taught is , there is a lesson to be learned each and everyday AND there is a friend to make each and everyday too! :0) {{HUGS}} to ALL of you amazing friends of mine that I THANK THE GOOD LORD for everynight before I go to sleep! Suzie :0)

novascotiasam said:

To be honest, I find that the more information I give extended family and longtime friends about SLE, the more confused they get. So I cheat. I ask them to remember how they felt the last time they were stuck at home with a bad case of the flu - most people can relate to that at least - and then I tell them having Lupus is like always having the flu, one that just never goes away.

I understand the 'forever flare', Suzie, my Lupus Specialist explained to me that not all Lupies have flares and remissions, some of us just bounce from symptom to symptom. I also have been told my Cerebral Lupus is too complex for many specialists to take me on, Kim, and my GP is like a best friend to me too, Melissa, as she helps me deal with each separate symptom and we focus on quality of life, rather than searching for a cure that never seems to quite make it. I would be lost without Marni, so I totally understand your concerns, Melissa.

I use to be very active before things deteriorated, to an all-time low this past year. Now like you and Suzie, no matter how hard I try, I seldom actually get to family functions or friends' gatherings. It's tough. Sometimes I think the worst symptom I have - disregarding the pain and fatigue and memory loss - is that SLE has made me unreliable. I wasn't brought up to be that way, so I often feel I am letting people down. I find myself apologizing a lot. My immediate family, bless them, keep begging me to stop apologizing, but sometimes I just don't know what else to say...

Now look at me, I have gone on much more than I meant to and I'm all ready to start apologizing! lol My friend wrote a song a couple of years back called The House Rules. I do try to take it to heart and live by his positive attitude. Come in, sit down, take a load off, relax and leave your troubles on the doorstep, if just for a little while. Lean on those who love you, as you would do for them. But I am rambling now, so I will say goodnight as we approach 6 AM up here.

You all take care of each other, that's a precious gift Ben has given us. Hugs ~ Shari


#6

In all honesty I too use the flu like thing or bad allergies. There are, quite frankly, times that I just do not "feel" like explaining it! I happen to have every worsen allergies as well...to almost everything in the air. Mold, Pollen, Dust, Dander, Herbicides/Pesticides (even the "all natural" ones). So when my allergies act up on top of my 'forever flare' I just don't have the energy to explain it to people! I tell them I have the flu or allergy attack....and I apoligize my tush off as well.

Trust me I would rather be out having a good time than at home barely able to care for myself, let alone anyone/thing else! I have also begged my partner and my munchkin not to sympathize or apoligize to me for not feeling well. I can't stand the pity! Pity is actually a form of abuse. I know it sounds crazy, but I really don't want to hear it or see it. I am cooping with this as best I can, the rest I just have resigned myself to give it over to the world and my Higher Power!

Days like today are especially bad...I have not slept thru the night in days, my hands, wrist ache and are swollen. My allergies are acting up. My feet, ankles(I have vericous veins on the inside of my ankles) and calves are swollen and hurt. I feel like just going to bed and pulling the sheet over my head. To top it all off the left side of my face is swollen and bruising from the surgery. It is just not a good day for me!

I am trying to do what I know, find something that just tickles me to no end....a real laugh (which hurts my face), get into my spirituality, took a shower and had my coffee. Oh and take my meds. I am attempting to make it a good day, but feel like I am going to end up in bed anyways.

So apoligizing is the last thing on my mind. But venting here makes things just that little bit better. So thank you All!

Be Blessed....

Melissa

Suzie D. said:

So True! You really did speak so much of what we may feel, but can't say to others! People can't always totally get what we are going through, for, they do not have the same! As we cannot fully understand what people with other illnesses "actually" feel. BUT, we can with open mind and hearts, listen & most of all be their friend. Because life is a lesson and the one thing I have recently been taught is , there is a lesson to be learned each and everyday AND there is a friend to make each and everyday too! :0) {{HUGS}} to ALL of you amazing friends of mine that I THANK THE GOOD LORD for everynight before I go to sleep! Suzie :0)

novascotiasam said:

To be honest, I find that the more information I give extended family and longtime friends about SLE, the more confused they get. So I cheat. I ask them to remember how they felt the last time they were stuck at home with a bad case of the flu - most people can relate to that at least - and then I tell them having Lupus is like always having the flu, one that just never goes away.

I understand the 'forever flare', Suzie, my Lupus Specialist explained to me that not all Lupies have flares and remissions, some of us just bounce from symptom to symptom. I also have been told my Cerebral Lupus is too complex for many specialists to take me on, Kim, and my GP is like a best friend to me too, Melissa, as she helps me deal with each separate symptom and we focus on quality of life, rather than searching for a cure that never seems to quite make it. I would be lost without Marni, so I totally understand your concerns, Melissa.

I use to be very active before things deteriorated, to an all-time low this past year. Now like you and Suzie, no matter how hard I try, I seldom actually get to family functions or friends' gatherings. It's tough. Sometimes I think the worst symptom I have - disregarding the pain and fatigue and memory loss - is that SLE has made me unreliable. I wasn't brought up to be that way, so I often feel I am letting people down. I find myself apologizing a lot. My immediate family, bless them, keep begging me to stop apologizing, but sometimes I just don't know what else to say...

Now look at me, I have gone on much more than I meant to and I'm all ready to start apologizing! lol My friend wrote a song a couple of years back called The House Rules. I do try to take it to heart and live by his positive attitude. Come in, sit down, take a load off, relax and leave your troubles on the doorstep, if just for a little while. Lean on those who love you, as you would do for them. But I am rambling now, so I will say goodnight as we approach 6 AM up here.

You all take care of each other, that's a precious gift Ben has given us. Hugs ~ Shari


#7

Hi Melissa, Right there with you my friend, I feel like CRAP today too, IT stinks, but life goes on, I hear ya on that one. I do the same as you, try to find something poitive, funny, whatever to take my mind off of it. TIRED of waking up in pain everyday, and when you have another issue (your tooth extraction) well that is the icing on the cake! Like I said yesterday or the day before, I bet you got so hyped up and anxious about the surgery, got in a panic, was in pain from the abcess that you have welcomed new flare symptoms. How do I know? Well, it happens to me alllllll the time! Now, you need to rest & sleep, the insomnia also is making it worse for your body. Can't you get something to help you sleep better. Your body needs that! Keep me posted, but I hope u did go to bed and fell fast asleep into lala land :0),LOL.....U will feel a little better after u rest up! Take Care! & Stay Strong! {{HUGS}} Suzie

:0)

M. D. Callender said:

In all honesty I too use the flu like thing or bad allergies. There are, quite frankly, times that I just do not "feel" like explaining it! I happen to have every worsen allergies as well...to almost everything in the air. Mold, Pollen, Dust, Dander, Herbicides/Pesticides (even the "all natural" ones). So when my allergies act up on top of my 'forever flare' I just don't have the energy to explain it to people! I tell them I have the flu or allergy attack....and I apoligize my tush off as well.

Trust me I would rather be out having a good time than at home barely able to care for myself, let alone anyone/thing else! I have also begged my partner and my munchkin not to sympathize or apoligize to me for not feeling well. I can't stand the pity! Pity is actually a form of abuse. I know it sounds crazy, but I really don't want to hear it or see it. I am cooping with this as best I can, the rest I just have resigned myself to give it over to the world and my Higher Power!

Days like today are especially bad...I have not slept thru the night in days, my hands, wrist ache and are swollen. My allergies are acting up. My feet, ankles(I have vericous veins on the inside of my ankles) and calves are swollen and hurt. I feel like just going to bed and pulling the sheet over my head. To top it all off the left side of my face is swollen and bruising from the surgery. It is just not a good day for me!

I am trying to do what I know, find something that just tickles me to no end....a real laugh (which hurts my face), get into my spirituality, took a shower and had my coffee. Oh and take my meds. I am attempting to make it a good day, but feel like I am going to end up in bed anyways.

So apoligizing is the last thing on my mind. But venting here makes things just that little bit better. So thank you All!

Be Blessed....

Melissa

Suzie D. said:

So True! You really did speak so much of what we may feel, but can't say to others! People can't always totally get what we are going through, for, they do not have the same! As we cannot fully understand what people with other illnesses "actually" feel. BUT, we can with open mind and hearts, listen & most of all be their friend. Because life is a lesson and the one thing I have recently been taught is , there is a lesson to be learned each and everyday AND there is a friend to make each and everyday too! :0) {{HUGS}} to ALL of you amazing friends of mine that I THANK THE GOOD LORD for everynight before I go to sleep! Suzie :0)

novascotiasam said:

To be honest, I find that the more information I give extended family and longtime friends about SLE, the more confused they get. So I cheat. I ask them to remember how they felt the last time they were stuck at home with a bad case of the flu - most people can relate to that at least - and then I tell them having Lupus is like always having the flu, one that just never goes away.

I understand the 'forever flare', Suzie, my Lupus Specialist explained to me that not all Lupies have flares and remissions, some of us just bounce from symptom to symptom. I also have been told my Cerebral Lupus is too complex for many specialists to take me on, Kim, and my GP is like a best friend to me too, Melissa, as she helps me deal with each separate symptom and we focus on quality of life, rather than searching for a cure that never seems to quite make it. I would be lost without Marni, so I totally understand your concerns, Melissa.

I use to be very active before things deteriorated, to an all-time low this past year. Now like you and Suzie, no matter how hard I try, I seldom actually get to family functions or friends' gatherings. It's tough. Sometimes I think the worst symptom I have - disregarding the pain and fatigue and memory loss - is that SLE has made me unreliable. I wasn't brought up to be that way, so I often feel I am letting people down. I find myself apologizing a lot. My immediate family, bless them, keep begging me to stop apologizing, but sometimes I just don't know what else to say...

Now look at me, I have gone on much more than I meant to and I'm all ready to start apologizing! lol My friend wrote a song a couple of years back called The House Rules. I do try to take it to heart and live by his positive attitude. Come in, sit down, take a load off, relax and leave your troubles on the doorstep, if just for a little while. Lean on those who love you, as you would do for them. But I am rambling now, so I will say goodnight as we approach 6 AM up here.

You all take care of each other, that's a precious gift Ben has given us. Hugs ~ Shari


#8

Melisaa, Your story is one that I will cut and paste and send to my boyfriend and others because it explains what I feel like better than I ever could. THANK YOU so much. Gail the LupanCatwoman P.S. I just joined this site a few days ago.


#9

Lupancatwoman...

You are more than welcome to take words and make them your own, hope it helps. Welcome to this site, I have so very helpfull! I hope you find it thae same for you. As Suzie says it in 'our own little lupus family ' It is safe place to vent, get/give information and place to feel a little less alone in this disorder!


#10

Dear Melissa,

If you have friends it is easy to explain. I say to them I am allergic to my own body. I can not go into the sun. If I am tired it is because of Lupus. I have had it long enough so most of my friends understand. You really don't need everyone to understand only the real friends will understand.

I would not worry about what others think, as long as you know yourself. Take one day at a time. Go with the flow and never project so much into the future...live each day as it comes. Doctors are hard to find, I have been to many, if I don't like them I try to find another who is helpful.

Feel better, and don't be so hard on yourself, everyone has something and nobody is perfect. Be true to yourself.

Take good care of yourself,

Zuppie


#11

Zuppie…

I think perhaps you misunderstood my post. I am a very positive person! When I think “why me”, I answer myself I think because I can handle this (Higher Power thing). This disorder was placed upon me because I am strong, positive, and can handle whatever comes my way. Now, certainly there times when it gets to me. I hurt mentally and physically. All I want to do is go to bed, pull the sheet over my head cry and scream into my pillow. I would not wish this disorder on my worst enemy.

I am glad you have a group of intelligent, supportive, and understanding friends. This disorder can be isolating and lonely. I find that people can see I am tired but that is it. They don’t understand the pain. Certainly the do not understand the concept that my body is allergic to itself, that my immune system is on hyper-drive and killing off it good cells. They do not understand why I get “sick” so often. That the simplest of seasonal bugs can put me flat on my back for weeks, let alone how my known allergies can make me so ill.

You don’t know me so there is no way of you knowing I am outgoing, loving, helpful person. I can be having a bad and friends will call with their issue and I always stop whatever I am doing and listen and give to them what they need; be it man bashing a thoughtless husband, helping a friend that is stuck in a domestic violence situation (including making all the call so he can get into a shelter), to making a friend laugh because she has a massive depressive disorder. Those are just a few examples. These are all things I can and have done from bed.

I certainly do not expect everyone I known to understand….I do not even tell everyone I know. I am freaked out about my doctor situation because I am new to this area and tired of having “bad” doctors…..plus I do not have insurance. The thought of pay $75.00 or more for a jackass to treat me badly is not high on my priority list. I am sorry if I came of as being a worry wart or hard on myself, not was not my intention! Finally I say that I am perfectly imperfect and that’s the way I like it!!! I would not want to be oerfect. /there is no fun in that.

Be Blessed…..

Melissa


#12

Nicely Put my Friend Melissa, Those are the perfect words to describe the imperfectness that this miserable disease causes, but HEY, we can never let it win, right! Together we can all be awesome, cause we know that we sure are! :0) Have a Wonderful Weekend, Sorry to hear your sweetheart had to leave for a bit, but when he gets back, I am sure you will get an even longer foot rub, lol! Be Well! Xoxox Suzie :0)

M. D. Callender said:

Zuppie…

I think perhaps you misunderstood my post. I am a very positive person! When I think “why me”, I answer myself I think because I can handle this (Higher Power thing). This disorder was placed upon me because I am strong, positive, and can handle whatever comes my way. Now, certainly there times when it gets to me. I hurt mentally and physically. All I want to do is go to bed, pull the sheet over my head cry and scream into my pillow. I would not wish this disorder on my worst enemy.

I am glad you have a group of intelligent, supportive, and understanding friends. This disorder can be isolating and lonely. I find that people can see I am tired but that is it. They don’t understand the pain. Certainly the do not understand the concept that my body is allergic to itself, that my immune system is on hyper-drive and killing off it good cells. They do not understand why I get “sick” so often. That the simplest of seasonal bugs can put me flat on my back for weeks, let alone how my known allergies can make me so ill.

You don’t know me so there is no way of you knowing I am outgoing, loving, helpful person. I can be having a bad and friends will call with their issue and I always stop whatever I am doing and listen and give to them what they need; be it man bashing a thoughtless husband, helping a friend that is stuck in a domestic violence situation (including making all the call so he can get into a shelter), to making a friend laugh because she has a massive depressive disorder. Those are just a few examples. These are all things I can and have done from bed.

I certainly do not expect everyone I known to understand….I do not even tell everyone I know. I am freaked out about my doctor situation because I am new to this area and tired of having “bad” doctors…..plus I do not have insurance. The thought of pay $75.00 or more for a jackass to treat me badly is not high on my priority list. I am sorry if I came of as being a worry wart or hard on myself, not was not my intention! Finally I say that I am perfectly imperfect and that’s the way I like it!!! I would not want to be oerfect. /there is no fun in that.

Be Blessed…..

Melissa


#13

Mellisa,

I am sorry if you thought I didn't understand your post. I have Lupus. I have it now for 40 years. You are sick because of Lupus, and I understand how you feel. I have had everything go wrong in my body from head to toe. You are correct I don't know you, but I do know the disease. I thought I was helping, I guess I didn't help you.

You have Lupus too, and your life as you knew it is going to be very different. You will find help soon, I didn't think you were a worry wart, I was just trying to help. P.S. You come first, because now it is your turn to ask for help.

Zuppie



M. D. Callender said:

Zuppie…

I think perhaps you misunderstood my post. I am a very positive person! When I think “why me”, I answer myself I think because I can handle this (Higher Power thing). This disorder was placed upon me because I am strong, positive, and can handle whatever comes my way. Now, certainly there times when it gets to me. I hurt mentally and physically. All I want to do is go to bed, pull the sheet over my head cry and scream into my pillow. I would not wish this disorder on my worst enemy.

I am glad you have a group of intelligent, supportive, and understanding friends. This disorder can be isolating and lonely. I find that people can see I am tired but that is it. They don’t understand the pain. Certainly the do not understand the concept that my body is allergic to itself, that my immune system is on hyper-drive and killing off it good cells. They do not understand why I get “sick” so often. That the simplest of seasonal bugs can put me flat on my back for weeks, let alone how my known allergies can make me so ill.

You don’t know me so there is no way of you knowing I am outgoing, loving, helpful person. I can be having a bad and friends will call with their issue and I always stop whatever I am doing and listen and give to them what they need; be it man bashing a thoughtless husband, helping a friend that is stuck in a domestic violence situation (including making all the call so he can get into a shelter), to making a friend laugh because she has a massive depressive disorder. Those are just a few examples. These are all things I can and have done from bed.

I certainly do not expect everyone I known to understand….I do not even tell everyone I know. I am freaked out about my doctor situation because I am new to this area and tired of having “bad” doctors…..plus I do not have insurance. The thought of pay $75.00 or more for a jackass to treat me badly is not high on my priority list. I am sorry if I came of as being a worry wart or hard on myself, not was not my intention! Finally I say that I am perfectly imperfect and that’s the way I like it!!! I would not want to be oerfect. /there is no fun in that.

Be Blessed…..

Melissa


#14

I couldn't believe how similar your problems/experiences are to my own.....only I've never actually managed to put it all into words for people to understand in the way you have here.......well done!!!! I find that I just don't try to explain what's wrong, due to not feeling confident enough anymore to go into it all with people.....I tend to now just say, 'oh it's just a lot of different autoimmune stuff going on' and I leave it at that....which likely then is adding to my low self esteem and depresseion as that then leaves me feeling pretty worthless, not understood etc etc.

It was great to read your positive attitude and the fact that you so rightly recognised what you can and do carryout well........I must try to be more accepting of where I am at the moment and stop dwelling on what I 'can't do' and focus on what 'I can'......Thanks for sharing and for supporting.

I hope you are well today.

Bless you

Kaz


#15

Hi Kaz,

I am happy to see that after reading all of the replies it has helped you understand that were are all in the same boat. Don't ever feel worthless or alone because so many people regardless if it is Autoimmune or not have the same helpless feeling, but over time, you will realize you aren't in this alone. You will learn to let it roll of your back and not let it affect yourself, both body & mind. It takes time and some days are easier than others with feeling OK about your situation, over time you will learn who is going to accept you for who you are and support you, they will be your "support team & true friends" and then you unfortunatley will realize the negativity and selfishness of some who are so ignorant and have no concern for you or anyone else for that matter, they are the ones you stay far away from. Surround yourself with the positive people and don't give the negative ones another second of your precious time. In time we all learn, it just takes some time & practice! You aren't alone here, so remember that! Wishing you well always! Keep Smiling! Suzie :0)

KazP said:

I couldn't believe how similar your problems/experiences are to my own.....only I've never actually managed to put it all into words for people to understand in the way you have here.......well done!!!! I find that I just don't try to explain what's wrong, due to not feeling confident enough anymore to go into it all with people.....I tend to now just say, 'oh it's just a lot of different autoimmune stuff going on' and I leave it at that....which likely then is adding to my low self esteem and depresseion as that then leaves me feeling pretty worthless, not understood etc etc.

It was great to read your positive attitude and the fact that you so rightly recognised what you can and do carryout well........I must try to be more accepting of where I am at the moment and stop dwelling on what I 'can't do' and focus on what 'I can'......Thanks for sharing and for supporting.

I hope you are well today.

Bless you

Kaz


#16

Zuppie....

I only meant to make things clear, there is no need for you to apoligize to me, ever!

Be Blessed...

Melissa

zuppie said:

Mellisa,

I am sorry if you thought I didn't understand your post. I have Lupus. I have it now for 40 years. You are sick because of Lupus, and I understand how you feel. I have had everything go wrong in my body from head to toe. You are correct I don't know you, but I do know the disease. I thought I was helping, I guess I didn't help you.

You have Lupus too, and your life as you knew it is going to be very different. You will find help soon, I didn't think you were a worry wart, I was just trying to help. P.S. You come first, because now it is your turn to ask for help.

Zuppie



M. D. Callender said:

Zuppie…

I think perhaps you misunderstood my post. I am a very positive person! When I think “why me”, I answer myself I think because I can handle this (Higher Power thing). This disorder was placed upon me because I am strong, positive, and can handle whatever comes my way. Now, certainly there times when it gets to me. I hurt mentally and physically. All I want to do is go to bed, pull the sheet over my head cry and scream into my pillow. I would not wish this disorder on my worst enemy.

I am glad you have a group of intelligent, supportive, and understanding friends. This disorder can be isolating and lonely. I find that people can see I am tired but that is it. They don’t understand the pain. Certainly the do not understand the concept that my body is allergic to itself, that my immune system is on hyper-drive and killing off it good cells. They do not understand why I get “sick” so often. That the simplest of seasonal bugs can put me flat on my back for weeks, let alone how my known allergies can make me so ill.

You don’t know me so there is no way of you knowing I am outgoing, loving, helpful person. I can be having a bad and friends will call with their issue and I always stop whatever I am doing and listen and give to them what they need; be it man bashing a thoughtless husband, helping a friend that is stuck in a domestic violence situation (including making all the call so he can get into a shelter), to making a friend laugh because she has a massive depressive disorder. Those are just a few examples. These are all things I can and have done from bed.

I certainly do not expect everyone I known to understand….I do not even tell everyone I know. I am freaked out about my doctor situation because I am new to this area and tired of having “bad” doctors…..plus I do not have insurance. The thought of pay $75.00 or more for a jackass to treat me badly is not high on my priority list. I am sorry if I came of as being a worry wart or hard on myself, not was not my intention! Finally I say that I am perfectly imperfect and that’s the way I like it!!! I would not want to be oerfect. /there is no fun in that.

Be Blessed…..

Melissa


#17

Kaz...

I am happy to know that my words resonate within you. Lupus is not an easy thing. I often ask myself why bother educating others that do not have it and are not likely to even know someone with Lupus. Then I remind myself that education brings light to the subject, and that leads to more interest, which inturn hopefully leads to research and better treatments. So enlighten others is not necessarily a waste of my time and energy, but maybe it will change some one's life either now or in the future. That possibly I could be difference in helping find better treatments and who knows maybe even a cure!

Trust me, though, when I say I understand were you are! Lupus is like climbing Mount Everest; the highest point above water in the world. Not for novices. Unlike climbing Mount Everest we are all novices when we start out, there is really is no training, nor is there any turn back. It is a progressive disorder, and just when you think you,ve got the hang of it....well it changes on you.

When you are feeling at your worest, do me a favor...smile. Just smile for no reason at all. Not one of those cheesy smiles either a really one. You are stronger than you think, and cooping with this thing the best you know how. So smile!!!

Be Blessed...

Melissa

KazP said:

I couldn't believe how similar your problems/experiences are to my own.....only I've never actually managed to put it all into words for people to understand in the way you have here.......well done!!!! I find that I just don't try to explain what's wrong, due to not feeling confident enough anymore to go into it all with people.....I tend to now just say, 'oh it's just a lot of different autoimmune stuff going on' and I leave it at that....which likely then is adding to my low self esteem and depresseion as that then leaves me feeling pretty worthless, not understood etc etc.

It was great to read your positive attitude and the fact that you so rightly recognised what you can and do carryout well........I must try to be more accepting of where I am at the moment and stop dwelling on what I 'can't do' and focus on what 'I can'......Thanks for sharing and for supporting.

I hope you are well today.

Bless you

Kaz


#18


Suzie....

Beautifully put!

Be Blessed...

Melissa
Suzie D. said:

Hi Kaz,

I am happy to see that after reading all of the replies it has helped you understand that were are all in the same boat. Don't ever feel worthless or alone because so many people regardless if it is Autoimmune or not have the same helpless feeling, but over time, you will realize you aren't in this alone. You will learn to let it roll of your back and not let it affect yourself, both body & mind. It takes time and some days are easier than others with feeling OK about your situation, over time you will learn who is going to accept you for who you are and support you, they will be your "support team & true friends" and then you unfortunatley will realize the negativity and selfishness of some who are so ignorant and have no concern for you or anyone else for that matter, they are the ones you stay far away from. Surround yourself with the positive people and don't give the negative ones another second of your precious time. In time we all learn, it just takes some time & practice! You aren't alone here, so remember that! Wishing you well always! Keep Smiling! Suzie :0)

KazP said:

I couldn't believe how similar your problems/experiences are to my own.....only I've never actually managed to put it all into words for people to understand in the way you have here.......well done!!!! I find that I just don't try to explain what's wrong, due to not feeling confident enough anymore to go into it all with people.....I tend to now just say, 'oh it's just a lot of different autoimmune stuff going on' and I leave it at that....which likely then is adding to my low self esteem and depresseion as that then leaves me feeling pretty worthless, not understood etc etc.

It was great to read your positive attitude and the fact that you so rightly recognised what you can and do carryout well........I must try to be more accepting of where I am at the moment and stop dwelling on what I 'can't do' and focus on what 'I can'......Thanks for sharing and for supporting.

I hope you are well today.

Bless you

Kaz


#19

Melissa,

I would have to say that every post to this discussion is a learning experience for us all. Each one of us that had advice to share on this matter really makes a beautiful story with a happy ending, and we all love when a story concludes happily! We have become not only a support system for each other, but a team & a lil' family. It is truly a blessing that we all have each other, I sure know that is how i feel, and I would bet that you all agree! i am happy to be in this journey and "test" of our endureness with you my friends, you make my days easier simply by knowing you are a "click" of a button away! I hope you all feel the same as me.... Be Well Xoxoxoxo Suzie :0)

M. D. Callender said:


Suzie....

Beautifully put!

Be Blessed...

Melissa
Suzie D. said:

Hi Kaz,

I am happy to see that after reading all of the replies it has helped you understand that were are all in the same boat. Don't ever feel worthless or alone because so many people regardless if it is Autoimmune or not have the same helpless feeling, but over time, you will realize you aren't in this alone. You will learn to let it roll of your back and not let it affect yourself, both body & mind. It takes time and some days are easier than others with feeling OK about your situation, over time you will learn who is going to accept you for who you are and support you, they will be your "support team & true friends" and then you unfortunatley will realize the negativity and selfishness of some who are so ignorant and have no concern for you or anyone else for that matter, they are the ones you stay far away from. Surround yourself with the positive people and don't give the negative ones another second of your precious time. In time we all learn, it just takes some time & practice! You aren't alone here, so remember that! Wishing you well always! Keep Smiling! Suzie :0)

KazP said:

I couldn't believe how similar your problems/experiences are to my own.....only I've never actually managed to put it all into words for people to understand in the way you have here.......well done!!!! I find that I just don't try to explain what's wrong, due to not feeling confident enough anymore to go into it all with people.....I tend to now just say, 'oh it's just a lot of different autoimmune stuff going on' and I leave it at that....which likely then is adding to my low self esteem and depresseion as that then leaves me feeling pretty worthless, not understood etc etc.

It was great to read your positive attitude and the fact that you so rightly recognised what you can and do carryout well........I must try to be more accepting of where I am at the moment and stop dwelling on what I 'can't do' and focus on what 'I can'......Thanks for sharing and for supporting.

I hope you are well today.

Bless you

Kaz


#20

Suzie...

I would have to say you hit on many points that resonate within me. Instead of checking in every few days (if I remember) this is my first stop in the morning and checked frequently throughout the the day, certainly the last place I look before I shut down for the night. LOL...funny with all that use you would think I would be able to nagivate this site with ease.

This disorder is as unique as each of us, we share some of the same effects but not to exetremes. While I have never stood or walked in your shoes, nor you mine all of you are much closer to getting it than even my own wonderful partner. There is no way to know what Lupus is, unless you have it. Just because you have it you may not have the same effects, but general basic principles are there...and in the end that is what counts....it is what make us Suzie's "little Lupus family".

I, for one/ am honored and humbled by being part of this online community. Human are pretty simple they look for similiarities to others. Now there is some truth in opposites attract, but you can not be opposite in every single way and have a connection. We all have a come denominator. So dispite how horrible this disorder is, we all share in one thing, Lupus.

The mere fact that this website exsists is a testsimate to each and every one of us and our commitment not only to "Bens Friends" and "Life with Lupus.org"

So thank you for and you for not only accepting me into you folds, but also giving me a safe place to vent and voice to ne heard

With my love

Be Blessed...

Melissa


Suzie D. said:

Melissa,

I would have to say that every post to this discussion is a learning experience for us all. Each one of us that had advice to share on this matter really makes a beautiful story with a happy ending, and we all love when a story concludes happily! We have become not only a support system for each other, but a team & a lil' family. It is truly a blessing that we all have each other, I sure know that is how i feel, and I would bet that you all agree! i am happy to be in this journey and "test" of our endureness with you my friends, you make my days easier simply by knowing you are a "click" of a button away! I hope you all feel the same as me.... Be Well Xoxoxoxo Suzie :0)

M. D. Callender said:


Suzie....

Beautifully put!

Be Blessed...

Melissa
Suzie D. said:

Hi Kaz,

I am happy to see that after reading all of the replies it has helped you understand that were are all in the same boat. Don't ever feel worthless or alone because so many people regardless if it is Autoimmune or not have the same helpless feeling, but over time, you will realize you aren't in this alone. You will learn to let it roll of your back and not let it affect yourself, both body & mind. It takes time and some days are easier than others with feeling OK about your situation, over time you will learn who is going to accept you for who you are and support you, they will be your "support team & true friends" and then you unfortunatley will realize the negativity and selfishness of some who are so ignorant and have no concern for you or anyone else for that matter, they are the ones you stay far away from. Surround yourself with the positive people and don't give the negative ones another second of your precious time. In time we all learn, it just takes some time & practice! You aren't alone here, so remember that! Wishing you well always! Keep Smiling! Suzie :0)

KazP said:

I couldn't believe how similar your problems/experiences are to my own.....only I've never actually managed to put it all into words for people to understand in the way you have here.......well done!!!! I find that I just don't try to explain what's wrong, due to not feeling confident enough anymore to go into it all with people.....I tend to now just say, 'oh it's just a lot of different autoimmune stuff going on' and I leave it at that....which likely then is adding to my low self esteem and depresseion as that then leaves me feeling pretty worthless, not understood etc etc.

It was great to read your positive attitude and the fact that you so rightly recognised what you can and do carryout well........I must try to be more accepting of where I am at the moment and stop dwelling on what I 'can't do' and focus on what 'I can'......Thanks for sharing and for supporting.

I hope you are well today.

Bless you

Kaz