[privacyguy]

I'm turning 34 this year and I have been diagnosed with SLE for 16 years. I have had many compications due to this illness and the various therapies provided by my team of doctors. The list seems to grow every year, hip replacements, pulmonary embolism, cellulitis, secondary hypertension, nephrotic syndrome of the kidneys ect.
I have lost track of the number of scars and wounds to my body that I have aquired over the last 16 years. I don't even wear short clothes or pants for fear of questions.


I have I have able to get by stregnth of will alone. I have never had anyone to rely on, not family or friends.

Recently, I have found that my will is failing and I feel very alone. I have lost friends, family, girlfriends and even lost job opportunities due my illness. My only close family, my sister is dying from terminal cancer and this will be her last year with me.

For such a large metropolian area like my city (Vancouver BC) there are not any if at many support groups in my city.

I have hid the Lupus from friends and co-workers and bosses in order to get by. I have climbed the corporate ladder to one the highest offices in my company and thrown myself into my work in order to not think about the Lupus and the constant pain.

I feel very alone and I don't feel that I could provide much to a potential partner except alot of late nite visits to the emergency room. I also cannot have children because of the chemo drugs regiments that have been used on me over the years to treat my nephritis of the kidneys.

I am afraid of what the futrue holds and would really appreciate some advice on how you all deal with this awful disease and perhaps how to get by.

Any comments would be appreciated as I can no longer go this alone. For once in my life, I do not have a sense of clarity or hope for the future.

 

[keebler]

Hi Privacyguy,
Welcome to "The Lupus Site"
You have found the right place to learn about lupus. We understand how you are feeling.
You have been threw so much threw out the years.

Having a chronic illness is tough to deal with. Depression is a big one. Have you talked to your doctors about this?

Take care.
Lyn

 

[privacyguy]

Thank for the response. I have discussed this with all of my doctors and they only seem interested in curing the physical not the mental. I some times feel like a stuffed animal thats been put together too many times. They have prescribed various "happy drugs" that also helped with the pain. I find that these drugs have many side effects as well. i aslo need to keep focused as my job requires it and alot of people rely on the decisions I make daily.

 

[keebler]

Having lupus is a complex illness. It not only effects us physically but also mentally. Maybe you could find a doctor who could help you mentally?
By "happy drugs" do you mean pain medication? Being in pain all the time can effect a person too. It can effect your sleeping and when you don't get enough sleep that can effect your pain. It gets to be quite a circle.
Hope you find some relief soon.
Take care,
Lyn

 

[Sage Hen]

Hello,

I am so sorry, to know you have endured so much, and alone.

I can't imagine, those strong enough to get through such an illness with no support. Although, I know we have several on this site.

I know..this site has been invaluable to me personally. Especially in the beginning, when trying to sort through what I was dealing with.

Step by step, and hurdle by hurdle others here have helped me. I only hope, I have helped others in some small way.

Please, stay with the site. We have several male members, that tune in.

You can make some very good personal friends, too in time.

Best Wishes..Hang in and on..

Sandy

 

[x_claire_x]

Hello, sounds like you have had more than enough, I think you are amazing to be carrying on as normal, considering the illnesses and lack of support you have had.. however I wonder if by appearing so normal and hiding so much of yourself away you are letting anyone close to you? I can understand why this would be, but it is difficult for others to get to know you without knowing this big part of your life. I am sorry about for your sister and for you, the stress of this will definitely be making your symptoms worse. I wonder if you can seek some extra support and help via your Dr or any support groups etc, it can be hard to ask for, but think your mind needs as much care as your body, Lupus affects all parts of you, the emotional being a big part. I wish I could help take some of your sadness away.. I send you alot of thoughts and concern and a great big hug.. hopefully this site will help you a bit. Take care of all of yourself.
Claire X

 

[Katharine]

Hello and welcome to the site

I wasn't quite sure what to reply to your story at first. I think we can all identify with the loneliness that this disease brings through isolation from others. I think that even those with families feel it.

Obviously, it is very important to consider whether there is an element of depression to what's going on with you. It is a very real part of the disease for many and should be addressed correctly by your docs.

The thing that struck me was it sounded like me so many years ago. I was a lot younger and it wasn't lupus the problem but another issue to do with my parents. For many years I fought through it and worked and worked, striving for the top at what I was doing. I never spoke to anyone about it. Mum had told me that others would "judge" me and so I just kept everything to myself.

I got to the top of what I was doing and found that there was nothing there. I no longer had a goal and was completely lost. I then had a pretty serious accident and while in hospital basically lost the will to keep on fighting. I just couldn't do it any more.

During rehab I met a young man who was a very good listener. For the first time in my life I spoke about everything. I am so sorry to have lost touch with him over the years as I owe him a huge debt. He gave me the ability to be me. To just let it out and not care what others thought. I have never looked back and I have never kept things bottled up again. Some people do judge but they're the ones not worth knowing. More often than not I have found that almost complete strangers have become very good friends.

With my illness I again had to learn to talk. When I first came here, I loved reading the posts, loved answering, but rarely talked about me. I'm getting better at that (trying to :lol and the people here are great.

Also, in the "real" world, I suddenly got fed up of smiling sweetly and telling people everything was fine and a subtle shift has meant a bit more honesty and just being more at peace with what is going on.

I am very lucky to have a wonderful, caring husband who wanted to marry me despite my rusty body and my filthy character :rotfl:

I honestly don't think that there's an issue with people not wanting to be with others. I think that it is just that you haven't yet met the "right" person. Maybe girlfriends are attracted to the facade of who you are at work and in your social life and therefore the emergency room reality is a bt of a shock but I do truly believe that there is somebody out there for everyone. Maybe, when you can be honest with yourself and others about how you feel and dealing with your disease, then, when you don't expect it, you'll meet that someone special.

Sorry if I've gone off on a tangent here

I hope you'll enjoy being here and that we can ease a little bit of that loneliness.

Your story has encouraged me to go ahead and actually write a short story I was thinking of for a competition. I think it'll do me good.

:hug:
Katharine

 

[debatat]

Your post really touched me. I am so sorry that you have had to go through all this, let alone, on your own. I am pleased that you have found this site though, it is full of lovely people who have a wealth of knowledge and experience in dealing with the ups and downs of lupus. The others have given great advice and the only thing I can add is to keep posting and let us know how you are doing. Maybe try the chat room.

Take care

Deb

 

[sam101360]

I am so sorry for you to have gone through this mostly alone, and to be facing the loss of the single person you can be yourself with.

I can just imagine the anger and grief you suffer thinking of the loss of not only your best friend but also a sister.

Please know that although it may not seem like much, we are here for you, we do understand what you go through and the mask you wear everyday.

We offer non-judgemental caring support, a shoulder when you need it, and a joke or two when you are down. We have a great chat room that is a great way to interact more directly with our members, and I hope you will visit in there as often as you can.

Lastly I would like to add, that what the others have said about depression being a part of Lupus is quite true. Sometimes just finding a stranger to listen to your worries and fears without strings is a freeing experience. I sought a therapist to cope with my issues, and am now able to face them without fear and with a better attitude. I know this is not for everyone, but nothing ventured, nothing gained! All you lose is a couple of hours!

Please keep in touch and let us hear from you!

Stephanie

 

[Maia]

You're clearly a very strong and intelligent man - & you've done very well for yourself in so many ways. I think anyone would be feeling a bit of depression and a sense of loss and being a bit lost under your circumstances. Many would be completely devastated. I really feel for you and what you're going through.

If your medical doctors and specialists only want to treat the physical issues, then ask your GP if he knows of anyone that is good at treating someone psychologically with chronic disease or do a search of doctors and psychologists in your area with a phone book or any other source you can get your hands on. I'm sure there is someone that can help you through this time in your life, and with your upcoming loss of your dear sister. Drugs for depression may or may not be necessary, and that's your call. They shouldn't turn you into a zombie or less functional at work - at least not the newer ones on the market (the SSRI's).

(((hugs))) I really hope you can find some help to get you through this time in your life, and that you will be able to feel some hope and happiness again sometime in the near future.

 

[spellbinder]

greetings and salutation :shake:

as said by others, you have gone thru alot. i can hear the loneliness in your post and my heart just breaks. i am surprised that your docs haven't put you on some type of anti-depressents. some of don't like it when we are prescriped anti-d's as some doctors stop right there but they have definately helped me. i too am basically alone. my husband of 17yrs left me 2 and a half years ago, though he wasn't much of mental soothing type he did and does take care of the physical stuff. my sister who would have understood due to the fact she had MS, but she died a few years ago. my folks are elderly (in the mid 80's) and know i'm sick and care very much but as for support, well...they just don't quite get it. i can not drive, nor do i have a car. my husband does all my errands. so i basically stay home in my recliner with my two cats, they are the only companions i have but sometimes a human voice and shoulder to lean on would be nice. i know how lonely it is and its hard. i think about why do i bother? but i always seem to come back to i'm suppose to be here but for what is not for me to know at this time.

all i can do is offer you my friendship. i will (as will others) be here to listen, laugh, or cry with you.

please try to find a doctor for your mental and spiritual health, it mite help some

take care :hug:

hugs and kisses :kiss::foryou:

 

[orangelily]

:hugbetter::hug:

Welcome to what I think is the best site on the internet.

You have gone through so much on your own and think its about time you asked your Doctor for some help. Believe me its the best thing you can do.

The folks on this site are fantastic, they laugh with you, cry with you and my goodness they don't have let you pour your heart out...just what is needed.

Please look after yourself.

 

[elisabethm]

:welcome:To the site you will be made very at ease on this site as it has given so many diffrent people from all over the world some great advice.I am sorry about your Dear sister but dont give up hope on the rest of your life as i am sure that whenever you need help or support all you need to do is come on here and there will allways be somebody on the other end of line.It is the same in the chat room or you can send private emails.Just try and hold on as i am sure you are a strong person i Wish You Well Elisabeth

 

[Phlox]

I should like to echo everything everyone else has said. You are a strong worthwhile person who has had to cope with, and is coping with, a difficult illness and now the terminal illness of your dear sister. Please consider some medical help from somewhere - the right sort of the newer sorts of antidepressants may really help. Sometimes one has to try a few before finding the right one, and be prepared to wait for the effects. Of course Depression is a Lupus symptom and so many of us take pills to help. I take Citalopram and without it I feel very low. You may need some other treatment as well - something that suits you.

It is an isolating disease, I have lost many so called friends, members of family, and jobs as a result. I am fortunate because I have a wonderful husband and a few very good friends and I still find it difficult at times.

Take very good care of yourself.
M

 

[privacyguy]

Thank you all for your advice an your offers of support. I have in he past (when i was young, by my parents) been sent to therapists and have been prescribed various medications to combat my feeling of emptyness. The only problems is that once I speak about my problems, I find myself completley breaking down, sobbing with a complete sense of paralysis. If don't think about it, I am maintian a semblance of composure and normalcy. For some reason, most anti-depressants do not go well with my digestion as well.

My sister and I come from an abusive household and she to this day still suffers from post traumatic memories; even on her death-bed.

I am trying hard to move forward every day, but I seem to have developed an acute head paid and mutilpe infections that will not go away. The doctors have no ideas as to how to stop these issues even after many tests.

I don't know long I can keep up the facade at work as I work 12 hours a day including my commute.

I feel very tired and I am only able to sleep a few hours at a time for the last 16 years. I now find my self thinking how good it would be to sleep and never wake up. CNN has become my best friend to keep me company.

I feel very foolish for complaining, when so many more people are so much worse off on this board.

This is my last kick at the can and I will see where I can go from here if at all.

 

[Katharine]

Hello again,

I'm sorry that you have had to deal with such things through life. It's not easy and no-one it saying it is.

I think that if you didn't want to go forward, you wouldn't have come here and told us what you have and I'm sure that you know you have to talk to your doctors about what solution might be the best for you.

If I understand correctly the therapy you had was a long time ago, it may be time to be looking into it again but perhaps in a different form.

I'm sure that this is all affecting you more with your sister's situation, kind of making it all seem more intense too. I don't know what to say there, I can't pretend to understand as I'm not in your situation. I would like to hope that your sister would be the first to want you to try and get this sorted in some way...

You have gone to the top in your career, now you need to get there on a personal level. You also need to be a whole deal kinder to yourself. I think most people here would be quite unable to keep going at the rhythm you're at though I realise that you have needed to do that up to a point.

And, no need to apologise. No-one's suffering is any less important than anyone else's.

Katharine

 

[oesa]

Hi PG - I've now tried twice to respond to you and lost my sage wisdom both times - third time's the charm!

I'd just like to add my voice to those above, encouraging you to seek some help for how you are feeling. If your current docs don't want to talk about "feelings", find someone who will listen to you. I'm in Calgary, and I can phone a central health link line and talk to a nurse who can refer me on to either community resources or a doctor if needed, and I think Vancouver has a similar service. So if you're not comfortable with your docs, that might be an option for you too.

I know what you mean about the sense of needing to maintain momentum. I'm also a busy professional, and have worked really hard to get where I am - I'm currently flaring and am worried about needing to take time away - as it is I find there's not enough of me to go around most days! I love my job, and so I'm hoping to find a balance where I can still maintain some hours (and keep my favourite projects!) and also take care of my health. We all struggle to various degrees with all of the losses that lupus hands us, so part of the disease process includes finding ways of grieving those losses.

And as a Calgarian, may I add that if I lived in the drizzle and fog of Vancouver I'd be pretty downcast too...? :wink2:

Let us know how you are doing. This is a really great site, and you'll get good reliable information and support here.

Lisa

 

[KarolH]

Hi there and welcome to the board. I am really glad you found this place and I hope you can get out of it what I have, friendships, laughter, support, understanding, commpassion, etc.... I love the people here and they have really been my support system.

I can not add much more then the others have here but I want you to know that we are here for you anytime.

I hope to get to know you better.

 

[Maia]

I can relate... I also do my best to just not talk to anyone but closest family with the things that really bother me or upset me, including things from the past. And the older I get, the less I talk about much of anything of that sort.

I've also watched plenty of CNN in my nights! *laughs*
I like ABC's night news show as well...

But you may find some sleeping medication to be of great benefit to you in so many ways. That alone could help the depression, and could also improve the physical symptoms as lack of sleep over the long term really builds into a viscious cycle of no sleep => depression => pain and increased lupus symptoms => no sleep. I finally tried Ambien a few years ago and it helped a lot. I don't take it for more than a few weeks at a time; and can get rebound insomnia for a few nights after stopping it. Even getting 5 hours of consecutive sleep each night helps in so many ways.

I hope this is a possibility for you - or something similar. Best wishes...

 

[onetay]

Privacyguy,
Hi I am Tammy and I am in the usa. I know the feelings you are having except I did have 2 children. You are not alone here and I have found the site to be of great support and there is always someone here to talk to. I usually have wonderful things to say that help people but what do you say to someone like us? You have done all that you can with your career now it is time to make some friends and maybe a really good friend that will be with you always. I am so sorry about your sister, I am sure that every minute you can you spend with her. You will have wonderful memories when you need them. If you both are still able you plan a weekend just the 2 of you together. It will be hard when the time comes so we will be here for you. My heart is with you and so are my prayers. I hope you are feeling ok and doing ok in the mean time.