our bodies/way of life

[goats]

I attended a engagement party today for friends that I haven't seen for eight years
with the couple came a large family ,children and extended family
so there were around forty people. last time I saw most of these people I had a busy farm, two teenagers of mine and six partime teenagers of my spouse
I had know must of this people for ten years at that time

today, almost all the people did not know me. I didn't realise for awhile why I was sort of being ignored,till I decided to go and introduce myself again, I thought it might be one of those, yours vs my friends after seperation :huh:
well I found out that they just didn't know who I was.
okay, I was sitting very quiet in the corner( never used to sit,nerver had time)
okay,my face is very large (used to have a small face)
okay my body is very large ( fifty pounds more)
okay now have a rash on both arms and face and white skin( nerver had rashes and always had a very dark tan from the farm )
people were very shocked and tried to be nice,but you could see it in their faces
even my six step kids looked twice
and people said how calm I was and now have a large smile( guess I was to busy before to smile)
as the party went on and me sitting in my corner watching I realised that people are to busy to stop and smell the roses. after a time I was feeling ill and had to leave .but it was nice to be out and see people
but it sure was nice to come home to the quiet and out of the noise
but all the way home I realised how much lupus can change us, from our thinking to how we look. Am I sad I look like this...... no because the meds help me to function and I have finally found piece with myself
after resting I took out the family photo's and looked at the old me
what a different person.some say we don't change.we are the same
well I am not.
anyway,just my thoughts for the day : :D

[jhmom]

I haven't changed so much as far as appearance except I am pale, when before I would have a nice dark tan. Mine is more physical. I can't just go somewhere at the drop of a hat. I can't spend the whole day shopping with my friends, etc. Some of them understand and some don't..... some still talk to me and some don't....... like Carol I am at peace with who I am and who I have become.

I appreciate the little things a lot more than I ever have before and to me that's a good thing. Are there things I wish I could still do? SURE! I do what I can and people must accept it because I am doing the best I can.

Anyway, just my thoughts......

[Deb11]

{{{hugs}}}} :flowers: ,
I understand TOTALLY, this afternoon i went to the supermarket with my boyfriend, ( who I feel is embaressed by the way i look lately, i feel this way because of his actions, rather his no actions towards me) anyway we are in the store he goes his way, then we meet in the meat depatment. I see him talking to a friends wife who hasn't seen me in a while. She looked at me like i had two heads :hide: ....Well my face is as big as two heads at this time, :rolleyes: hair is real thin and stringy with bald spots( to much chemo), red rash across face,(I was always tiny could never gain a pound, I should have know about the meds I take now :notlook: )60lbs added to me, & on, & on.....I look in the mirror & don't recgnize myself, but its ok, cause I am alive, but it still bothers me on the other hand, because people don't no what we are going thru, they haven't a clue. There are many times when i am uncomfortable in the skin i am in, I see the pictures of me only a few years ago, what happen to that me, I was aware, approachable, etc. as tears roll down my face right now :cry: , it is sad, for us, but let me say something funny i am thinking about. the other day, it was the 1st very hot, humid 90 degree day, i pulled out clothes for the day, a sundress, I am struggling but get it over my head put one arm in then the other now i am trying to pull it all the way down, NOT happening :unsure: so now i am trying to get it off, It hurts to hold my arms up,
the dress wasn't coming off... I had to cut it off. :sigh: :lol: :( :lol: :lol:

I know all this can hurt in so many ways, maybe my new motto should be let it hurt so good!

Just always know that what others see is the bookcover,(won't no whats inside till they read it) & thats where all the good stuff is, the love,compassion, etc., OUR true beauty. :flowers: :flowers: :flowers:

BIG HUGS TO YOU!!!! :flowers: :flowers: :flowers: :flowers:
luv, Deb

[meg4340]

WOW, when I was diagnosed 11 years ago I was a size 12, 150 pounds, 5'8", swimming, biking and tennis were my hobbies. I walked five miles a day with friends in my neighborhood. Within ONE MONTH of getting sick, I had gained 60 pounds of prednisone weight (100 mg a day at the time). I hurt too much now to do the things I used to love so much. I'm at 280 pounds. ...... 130 pounds heavier than I was 11 years ago. My mind still feels young and beautiful, but my body and weight tell me it's not true. However, I've come to a really good acceptance of myself, my weight and my limitations....it's others around me that are having a hard time - they want to push me to lose weight, exercise, blah blah..you know the drill. Yes, this crappy disease changes us forever....however, I do now have the time to talk to my kids, lay in the floor with them and watch movies, get on the phone and help plan my son's wedding. I've just had to make adjustments and find a New Happy Zone! Love to all.......

[HelenS]

hi goats, i have often thought that with lupus comes an inner strength we didnt know we had. like you i have made peace with this illness and have come to the place where i accept it as part of who i am. but it is just a small part of who i am, a very small part. it can take 3 years or longer after a dx to get to a point of acceptance. i still get "down" once in while but i think that is normal. as my gp said "if you didnt get depressed with this disease you wouldnt be reacting in a normal way". we all have choices in life and i have chosen to deal with this illness with dignity.

stand tall my lupie buddies. love helenxxxxxxxxx

[Andrea H]

:) All I can do is sit and smile, when I read these post. I find it to be stregthening to know were not in this alone. :shake: We're in it together!! This message board is amazing. The beauty truley lies within. :flowers: Hope all of you have a terrific day! Andrea ;)

[rooney75]

I am also glad to read and hear others who feel the same. I think the weight and the not being able to tan is hard for me. But I was very spoiled and self-centered before I was DX with Lupus and having this has opened my eyes to others and the world. I used to and still sometimes am afraid to see people I went to school with but, I am in nursing school :nurse: and am happy in my life and also glad to be alive. :jump: Thanks Goats for reminding me that I am not alone!!! :D
Karisa :hello:

[KatieKat]

Hi all,
I can definitely relate to this....in the past year I've gained about 40 lbs, not really from meds since I'm not on pred. all the time (only during flares) but because my activity has been decreased so much due to fatigue, pain, etc. Some days I think of the girl a year ago who was 128lbs and in good shape, and wish I was her...but then I see my fiance (who has been with me through ALL of this and takes care of me, and loves me the way I am) and the life I have now....it may not be what I always dreamed (I wanted to go to medical school, was on the fast track in college, ahd perfect grades...I took last year off from school to figure out meds and have two surgeries due to lupus) but its still wonderful!
And I know one thing for sure....I know my body better than anyone who doesn't have lupus, and I have gained a much more positive attitude from being sick--the little things are much more important now.
Just my thoughts! :D

[MariaK]

I can see I am not alone. My fiance asked why I don't wear skirts last week and I had to tell him I don't like the way my knees look (they are always puffy). I get yukky nodules on my elbows so I don't like wearing short sleeves-this is a problem at work in my nurses uniform as I am always explaining this one!
The rashes drive me mad too! :hide:
Still can't accept me for me yet; still feeling like an old lady and walking like one. I guess I start worrying when I have a thing for crimpolene and flanelette bedding? :erm:

[flowergarden]

I'm still having difficulty with the changes. The physical changes have come quickly (two years), but it's now the mental changes that are really bothering me. It didn't get better with Cytoxan. My brain is still changing, and it's scary. I can accept a different body image much more easily than I can the changes in my cognition. I feel like I'm becoming someone I don't recognize--inside or out.

I have some good friends reminding me that I'm not liked for my ability to read or do math. But that doesn't change the fact that I used to like doing those things and I have a difficult time now.

In the past year I've become serious about beading. But the neuropsych report came back showing borderline impairment in my hands. I shouldn't plan on making beading my life's interest, I guess.

Oh, well. I hope to be able to cope before too long. :unsure:

[rwb200]

my wife and I have been married for 21 years this year and 18 of those have been with diagnosed Lupus.
over that time I have been married to several diferent ladies even tough she has always been my only wife.

I have seen her with long hair down to her knees and short hair that hardly existed. No hair cuts involved.
I have seen her wieght fluctuate by 50 pounds from just perfect to slightly over wieght and severely under wieght. I call 85 pounds severely under wieght.

I have seen beautiful clear skin to body covered with blisters over 90% of it.
It took three hours at a time to put medication on all of it.

I have seen many phases and many diferent ladies but have always been married to the same lady and loved her the same no matter how she looked or what was going on.

I can say this. I have heard before that what ever doesn't kill you makes you stronger. Not sure if that is true but I can say that I'm married to Super Woman and she is the strongest person I have ever seen or known.

[girlfriday]

I think what RWD said is one of the nicest things to read. It brought tears to my eyes reading it. Which isn't like me at all!!!! But I do find myself much more easily brought to tears then i used to be. Oh and I also have to get my boyfriend to read it. Might teach him a few things!!!!! :lol: Anyways take care.


Deborah

[macfamily53]

Welcome Goat

I can only share a little bit of what you are going through. I ahve had my weight loss recently but not to much really. I am at this time where i should be for my size but I know that could change at any time. I had my family doctor ask me last week when i was in for my yearly was I trying to loose weight. I could not believe she would say something so stupid. If she knew anything at all about Lupus which she no doubt does not it can happen at the drop of a hat. Well anyway i Have come to the conclusion that ir eally do not care if people understand why i cannot be outside in the sun and do not want ot know. I just try to take car eof myself as best i can and be glad i am still here. Like it has been said we would not be human if we did not have a good cry somedays or a lot of days. We have to learn to deal with something that we do not like at all. Anyone that does not have it cannot understand and they really do not mean to be that ignorant.Well anyway this is a good place to vent if you need to. We are all feeling the same way sometimes and i and a whole lot of other people are here for you. I hope to see you in the chat room. Take care of yourself.

Also RWB that was just beutiful what you posted. I think it should be in a book of poems. I can tell that came right from your heart. You are 1 in a million and I am sure your wife would agree with me. I have a feeling she is 1 in a million also. God Bless you both
Tammy

[Rainbowwalker]

:love: :love: :love: :love: :love: :love: :love: :love: :love:

I am sitting here with tears in my eyes from reading all these posts.
Let me wipe away my tears so I can type properly.

Righty...I haven't accepted the way i look or feel inside, I infact don't know how to feel and think about myself.I put on weight when im bad and loose weight when im active..sometimes i loose weight when im bad.
I have put on much weight and see a body that doesn't belong to me.
My hair is lifeless, my mind is scattered and I feel I am doing nothing in the relationship for my partner being the way I am..I guess I have much blame..but who for I am not sure

I am not normally this way..I am the person everyone comes too..the one that is strong..Im just being silly really

thanks for reading xxx

Love light and many blessings to you all xx

rainbowwalker


:love: :love: :love: :love: :love: :love: :love: :love: :love: :love:

[alobreto]

Hello to all! ;)
I agree with the others, RWB, that your post was inspiring! :love:

It is very difficult to NOT be concerned with our appearance, especially when it changes drastically and sometimes suddenly. Western society presents in advertising what is viewed as perfection.

Most of us would just be pleased as punch to look plain normal, what with moonface, weight gain, hair loss, and skin problems that come and go. And we don't know ahead of time when things might get worse! (The not knowing may actually be a blessing.)

That's just my 2cents. I'm lucky to have a hubby who feels like RWB does, although he doesn't write as beautifully. I still haven't come to terms with the body changes, but I know how fortunate I am to have a loving, accepting life partner.
Regards,
Angela :flowers:

[Tom]

:flowers:

It's very hard sometimes dealing with everything that goes with this disease. Pain, flares, changes in meds and directions it takes us is only half the battle. Depression, emotions, brain fog, and social funtioning is the other half. I think most us find it easier to be by ourselves, or try to keep life simple as possible. I think keeping the stress level to a minimum is the reason why.

I have been trying to get out more because we really need to. When I find that people are being mean or rude, I see it as their problem not mine. I go out to enjoy life, not let it get me down. Sometimes it's all about me and I don't let others get to me! We may not be bi-polar, but our emotional swings are big sometimes. I try to keep it in the middle as much as possible.

Try to always have a good day no matter what, and you will have more of them.

Take care. :goodvibes:

[jude mack]

Hi
I understand this in a big way, sometimes I gain allot of weight for no good reason and other times I have been called anorexic, lately I am haveing a happy medium. I hate haveing to keep 5 sizes of clothes in the closet. I wonder at times were ME went. I don't like having to wear turtle necks and long seleves to cover scars and such, but things could be allot worse. My outlook has changed, and I enjoy the
smaller things in life, that I took for granted before. Now days I am just glad to
be here and plan to enjoy whatever I can, no matter how small. I guess we all
look back and wonder. I try not to look back anymore, because now I have to deal with looking after myself the best way I can, that can be a big accomplishment in
itself. The me of nowdays may not be great, or even that good, but I am still me
no matter what. I think I have come to terms with how I look and my husband
loves me no matter what, so I do feel blessed. Take care all. Jude

Ps. rwb your post brought tears to my eyes, not many men are like you,
that initself is a shame.