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K.Grams
05-29-2009, 02:48 PM
..Love & Lupus..
This is something that comes across my mind pretty often. I know I am very young being only 19 but I wonder if I will ever be able to find true love having Lupus.

It could just be when I'm depressed from having flares that I think about this but I'm not sure.

Why would someone want to be with me? Why would someone choose to put up with me and my illness? It makes me feel not good enough for anyone. How am I supposed to make someone happy if I can't even get out of bed most days? Why would someone want to be with me if my medical bills will cause them to fall deep into debt like it did my parents? Why would someone want to be with me if I cant go on nice long walks in the sun like normal people? Why would anyone want me? How am I ever supposed to get married and try to start a family if I cant even take care of myself or even attempt to pick up something remotely heavy most of the time? How am I going to find someone to love me regardless of how the medication I take affects my body?

It's kind of scary to think about..there is just so much to put up with on my own...how is anyone else supposed to handle it? Depression is a huge part of my Lupie Life and it gets the best of me

ssingh
05-29-2009, 02:55 PM
Time is never the same. Good days will come........just try to be positive i know it is very hard.

dsunshine
05-29-2009, 02:56 PM
Awww...K!
I am so sorry you are going through this and having these thoughts. Trust me I have them as well...being 35 and single with no kids. The man I thought I was going to marry left me about a month after I was diagnosed in Nov. 2008. I am now in therapy once a week for both depression of having Lupus and trying to wrap my head around the fact that someone I thought loved me and vice versa would be there for me no matter what...he wasn't and didn't.
I KNOW you are worthy of love and will find love...the kind you want and need. You are young and beautiful and I am willing to bet that you will not be in pain for the rest of your life. I see remission in your future but you have to stop stressing off of life and concentrate on your health as stressing causes flare ups...which suck to say the least!
There is a wonderful man out there waiting to meet and be with you....I hope you are ready for love! Any man that loves you and understands what you go through and is emotionally connected to you will be there for all of what you have to endure!

K.Grams
05-29-2009, 03:13 PM
Thank you so much for your reply! I am sorry to hear about him leaving you but obviously it's his loss..how could any man leave a beautiful woman with a beautiful smile who truly needed them..you deserve a million times better. And thank you I know one day it'll probably happen but it's hard to get over those thoughts because like your ex it's hard for most people to deal with illness especially when it isn't them going threw it. I can't wait for this flare to be over and have a few months of relief and then hopefully I will stop thinking this way for awhile :)

I'd just like to meet someone who cares loves me and would do anything to make me feel better like my dad..there isn't a greater man than my dad.

dsunshine
05-29-2009, 05:19 PM
Your welcome! Thank you for the wonderful compliment! I try to keep up the appearence but some times I look like death on a soda cracker for real. Some days I can't even lift my arms to comb my hair but it gets better. As for my X...he cheated on me prior to me being diagnosed so I guess he just wasn't happy...BYE..Dirty Birdie! As for you...the flares will and are going to subside and you will feel like getting out and meeting people. I was the same way. I didn't want any of my friends to see me when I was sick and in pain. Now i have good days and I do go out and mix and mingle. You will find a man that will be all that you want and need and you have plenty of time. Focus on your health and remission from Lupus so you can feel good and move forward with your life!

mountaindreamer
05-29-2009, 05:44 PM
hi k,

there has to be people out there who care enough about others that they stay around and love someone even with lupus. There are many of us who have lost love due to the disease, and it really sucks....wish reality would be nicer to us.

However, there are also many members who have incredibly devoted loved ones who stand with them through everything including the bad flares, and worse drs.

Has your dr. started you on any meds? There are some medications that really help with the symptoms of lupus, but they take some time to get into our system. Some people go into remission, and have years of no symptoms.

There are members here who are having children while facing the disease, so you see, life can go on and people do love us, we just have to meet the right ones.

Use your Dad as your example, open your heart to someone like him, and hopefully happiness will find its way into your life....you certainly deserve some good times.

How incredibly wonderful your dad must be, he is a lucky man to have a daughter who loves him so much.

Pearl
05-29-2009, 05:44 PM
..Love & Lupus..
This is something that comes across my mind pretty often. I know I am very young being only 19 but I wonder if I will ever be able to find true love having Lupus.

It could just be when I'm depressed from having flares that I think about this but I'm not sure.

Why would someone want to be with me? Why would someone choose to put up with me and my illness? It makes me feel not good enough for anyone. How am I supposed to make someone happy if I can't even get out of bed most days? Why would someone want to be with me if my medical bills will cause them to fall deep into debt like it did my parents? Why would someone want to be with me if I cant go on nice long walks in the sun like normal people? Why would anyone want me? How am I ever supposed to get married and try to start a family if I cant even take care of myself or even attempt to pick up something remotely heavy most of the time? How am I going to find someone to love me regardless of how the medication I take affects my body?

It's kind of scary to think about..there is just so much to put up with on my own...how is anyone else supposed to handle it? Depression is a huge part of my Lupie Life and it gets the best of me

Someone will want to love you because you are young, beautiful and courageous. Someone will want you to love you because despite your illness, you find a way eventually to fight your way out of bed to face the day. Someone will want to love you because it is not the debt that matters. You matter. Someone will love you because no one will understand how to take care of husband and children more than someone who has known what it means to need to be taken care of. Someone will love you because they will be chivalrous enough to pick up the heavy things so the lady doesn't have to. Someone will love you because it's you they love, regardless of the medicine you take. Someone will love you because you are uniquely you. And you do not deserve any less.

Your depression is understandable, but take heart. You will have better days. Dsunshine is exactly right. Focus on your health. Take charge of it everyday, even when you hurt so badly that you cannot get out of bed. Decide here and now that IT will not steal another precious moment of your life. Even if you can only muster the strength to enjoy a good joke or a nice nap. Take it back. Take whatever you can, whenever you can. There is joy around you everywhere. Look for it and it will find you.

I wish you well.

Jana

K.Grams
05-29-2009, 07:06 PM
Dreamer..thank you so much for your impute. I do believe that there are people out there that love others unconditionally and I know it wouldn't be different for me but it's hard to
stay positive sometimes. And I have never met anyone with Lupus so meeting ladies who have children and Lupus would be amazing for me. To be able to ask questions of how they do it and deal with it would make it easier to think that one day it'll be possible for me to do it too.

And my dad is wonderful..he would try anything and everything and spend any amount of
if we thought it would help or fix or cure me. I would be lucky to find a guy half as amazing as him.

I am currently on 500mg of Cellcept (6 pills a day) I was on plaqunil but my doctor said
I no longer needed it and he told me I do not have to be on predinisone if I didn't want to because I am "just having a mild flare"...I hate that word just ugh it makes me mad!
If this is a "mild" flare I don't even want to know what a bad flare feels like..I'd die!

mountaindreamer
05-29-2009, 08:01 PM
hi k,

have you checked into a local lupus foundation chapter? there is probably some very good ones in the chicago area. a google search should take you to their website.

i also think you will find that it really helps to talk to each other here. I find that by sharing here, i don't really talk about it to my family and friends. hope you get as much from this group as i have.

Pearl
05-29-2009, 08:38 PM
Has your doctor experienced a flare personally so as to know the difference? And if your doc is basing that opinion on your bloodwork, then maybe you are seeing the wrong doc. Bloodwork can fluctuate, and just because your bloodwork looks better to the doc does not mean you feel well. You know your body better than anyone. Take care of yourself, rest, try not to stress, and don't stop demanding that you be taken seriously and that you get the care you need. Some doctors, as you will see by reading many posts here on the forum, find it very easy to call us hypochondriacs. They use the term loosely. It carries no weight with me unless I am speaking to a doc who has lupus. Then, I might listen.

Best to you this weekend.

Jana

tiggerlishus - Heidi
05-30-2009, 10:07 AM
Hay K

i'm Heidi and a 29 year old single lupie loo and i have your thoughts quiet often but i like people have said before try to stay postive i have several saying around my house that remind me every day ones like

'yesterrday is history, tomorrow is a mystery and today is a gift that is why its called the present!' - this one is one of the one on my bathroom door and reminds me to take each day as it comes and enjoy the small things in it

i also find writing a list on a really bad day of everything you done from gettting out of bed to brushing your teeth to opening the curtains makes you relise you have done quite alot of things in that day just not relised it

i have another one on my bathroom door that says 'failure is when you fall and stay down and sucess is in not in never falling but rising up again and again and again and again' - and trust me when i say i know how hard it is rising up again and again some times but i think to myself i will rise but this time it might take me a bit longer than before

i have another in my kitchen quite long so i'll sumarise it basicly it about if your a banana be the best banana you can be cause no matter how much you wana be a plum you can only ever be a second rate plum ( hope you can understand that! maybe i'll put it in a thread one day!) - sooo your the only one that can be you noo one else and one day your going to find someone that is going to love you for you for every bit of you from head to toe no matter what illness you have!!

and finally i try when i feel like that to think why am i feeling like this and figure it out to be because i'm in a flare so tell myself it will be over soon and i just got to ride the wave and it will soon be over a bit likke the say lifes like a roller coaster you got to ride the downs to enjoy the highs

i hope this helps its what i use sometimes takes bit longer than other but i always comes out feeling better in the end!!!
and always feel free to message me xxx

Angel Oliver
05-30-2009, 01:29 PM
First of all i want to say WOW you are beautiful!!! I know when sickness strikes,depression kicks in.That chatter in your mind is the depression talking.It can convince you...yes this is it...im on my own for life...noone will ever want me.But you know what.....you will be surprised.When you ''accept'' your sickness and begin to feel a touch better....life will not seem so bleak.
A couple of nights ago, as i too suffer with depression and anxiety...i sat here typing messages to members.....i was so low.I am the patient who is feeling like a hypochondriac.I am that 1% who has'nt got the diagnosis of whats wrong with me.They say i have LUpus...then not....they say i have chronic fatigue syndrome...then not.....now again being tested for lUPUS again.I know even before the bloods come back....they'll say im 'normal'.I feel so sick and left a very nice life behind.Well nicer than now.
I will admit something...and yes you and everyone will think...ooooooooow smelly girl.....but for 2 days i couldnt get out of bed.Depression and pain and life....oh i could not cope.Today in the UK we had our first Hot n sunny day.SO....i challenged depression....got up....finally had a bath :) then went shopping and then sat in the garden ....oh and had a pub lunch.I couldnt walk for swollen legs....but i felt good for doing it....knackered but good.So.....in the future.....take one day at a time.Think of only an hour ahead.Thinking to the future makes you worry...or with me it does anyway.You...one day....will find 'someone'.I know this cause i too thought like you.Then when i was'nt expecting it...found someone.....who likes me for me....illness and non bathing too lol.(I do bath every day...im not smelly all the time lol). So try not to predict the future......everything is already written....and you wont be alone.PLus....we are all here now...to help you along your journey.

Sending gentle hugs
Amanda.xxxxxx

mountaindreamer
05-30-2009, 02:24 PM
Heidi and Angel,

you ladies really wrote from your hearts. Thank you both for sharing these parts of your lives with us. Your stories exemplify the ultimate level of compassion and i am grateful to be able to share with both of you.

K, i hope you are feeling better today,

Heidi, i love the "today is a gift" , i am going to find this for my home.

Angel, so so sorry about the pain, depression, etc....i was so hoping that you were doing better....hang in there, things have to get better.

Angel Oliver
05-30-2009, 02:38 PM
Thanks Phyllis.Im hopeful my time will come and those happy days will flow in.It sometimes feels embarrasing....that i carnt cope....but then i have a good day...like today...swollen legs....but they drag well :). Thanks for being my friend.Your support always helps me.xxxxxxxxxxx

tiggerlishus - Heidi
05-30-2009, 03:33 PM
ahh dear angel hope your swelling goes down soon i wonder if its the english weather my hands have been terrible lately and with the need to revise for exams in two weeks it a struggle doc have actually put in tests to see if affected my kidney cause of other system but i'm sure its nothing just stress of everything lately !!
and phyllis thank you for kind words i ment every word of them dear K i do go throu those feeling quite often specailly latey as another boyfriend has bit the dust but i'm sure theres a bloke out there for as much as i'm sure theres one out there for me but in the mean time me and you are going to get our health to the best we can and enjoy every minute of singledom going out with the girlies when we can have pampering parties and so on!! so you hang in there girl and we're just be fine!! lots of love H xxx

Angel Oliver
05-30-2009, 03:41 PM
Heidi....just remember ...Men are like shoes...we have to try on few before we get the right fit...then we grow into them.Takes time...no rush...but i know when the blues come and you also are sick....oh how we long for a cuddle.Those cuddles will come soon as you are so beautiful and have a fab personality too.You'll find the right one....when the time is right!

Lots of love
Amanda,.xxxxxxxx

tiggerlishus - Heidi
05-30-2009, 03:47 PM
Aaaah thanks amanda i know just those bad time you think there under a rock in japan or something but in the good time i know there just around the corner and i don't actually feel like i need that thou been thinknig of getting a dog for those cuddles at least they don't answer back but think its only for slefish reason and it would be fair to a dog considering i only got out twice this week and don't have mush of a garden soo insteada just trying to consontrate on these exams i got in two weeks and sort these health systems out!!

Angel Oliver
05-30-2009, 03:54 PM
YOu've been through allot Heidi.Remember theres no rush...it'll happen when its ready to happen.Goodluck with the exams too.Hey.....maybe a kitten....shame isdm has given hers away already....but she still has Angel though.You take care....and well done for your strength you have....im going soon...so goodnight too.xxxxxxxxxxx

tiggerlishus - Heidi
05-30-2009, 03:57 PM
yer her kittens were gorgeous but i'm alergic so that would be a noo go!!
but thank you for luck going to need it!! lol
well have good sleep i'm going soon as well!!
sorry K for taking over your thread xxx

Angel Oliver
05-30-2009, 04:03 PM
Yes im also sorry :hijacked:....but it was done in a nice way.xxxxxxxx

Larz77
05-31-2009, 05:42 PM
After reading your note, This song came to mind....

Somewhere out there beneath the pale moonlight
Someone's thinking of me and loving me tonight

Somewhere out there someone's saying a prayer
That we'll find one another in that big somewhere out there

And even though I know how very far apart we are
It helps to think we might be wishing on the same bright star

And when the night wind starts to sing a lonesome lullaby
It helps to think we're sleeping underneath the same big sky

Somewhere out there if love can see us through
Then we'll be together somewhere out there
Out where dreams come true

And even though I know how very far apart we are
It helps to think we might be wishing on the same bright star

And when the night wind starts to sing a lonesome lullaby
It helps to think we're sleeping underneath the same big sky

Somewhere out there if love can see us through
Then we'll be together somewhere out there
Out where dreams come true

tiggerlishus - Heidi
06-01-2009, 01:59 AM
wow what lovely words Larz77 i'm gone copy them and keep them thank you very much!! xxxx

rob
06-01-2009, 07:30 AM
Hi K. Grams,

I find that people with Lupus have some very positive personality traits that many so-called "normal", or healthy people don't have. People with Lupus have an incredible amount of empathy and understanding for other people and their problems. And people with Lupus have an ability to endure some pretty hard times-perserverence is a very important trait. And, I think because of the seriousness of what we have to deal with, we don't have time for BS from others nor do we give others BS. It makes people with this disease very down to earth, and really honest I think. And, you are a beautiful, intelligent young woman, and you have so much to offer. Someone will come along and discover all you have to offer, and will be the luckiest man in the world that day. Not everything Lupus does to us has to be bad. Just remember that you have just as much, and probably even more to offer than most people. Your self worth is a quantity that cannot be measured, because it is infinite, and it is priceless.

Rob

MicRoMediC
06-01-2009, 07:54 AM
..Love & Lupus..
This is something that comes across my mind pretty often. I know I am very young being only 19 but I wonder if I will ever be able to find true love having Lupus.

It could just be when I'm depressed from having flares that I think about this but I'm not sure.

Why would someone want to be with me? Why would someone choose to put up with me and my illness? It makes me feel not good enough for anyone. How am I supposed to make someone happy if I can't even get out of bed most days? Why would someone want to be with me if my medical bills will cause them to fall deep into debt like it did my parents? Why would someone want to be with me if I cant go on nice long walks in the sun like normal people? Why would anyone want me? How am I ever supposed to get married and try to start a family if I cant even take care of myself or even attempt to pick up something remotely heavy most of the time? How am I going to find someone to love me regardless of how the medication I take affects my body?

It's kind of scary to think about..there is just so much to put up with on my own...how is anyone else supposed to handle it? Depression is a huge part of my Lupie Life and it gets the best of me

Wow. I know exactly how you feel. My boyfriend and I started dating in January and since then I've had two surgeries and was diagnosed with SLE. I have often wondered why he's with me and why anyone would want to put up with me. He is the absolute most wonderful thing that could have ever happened to me. Every time I go to the doctor he's very involved and the medicines I'm on he researches and is concerned about the side effects. He's always there for me and cares about me unconditionally. He's amazing.

You will find someone that will care about you the same way. If the person you're with doesn't care about you in an amazing, unconditional way, he doesn't deserve you.

Saysusie
06-01-2009, 12:25 PM
All I can say is "Amen To That"!!!

Saysusie