[Zoi]

Hello!

I know I haven't been posting here regularly over the past year or so but things took a turn from bad to worse to the worst a couple of times over and although there have been times when I really really wanted to post and say hi I honestly did not know what to say...

I have gone through the usual imuran, cellcept, cytoxan, pred, iv pred, more iv pred, rituxan, an experimental med, plasmapheresis etc etc etc route for the lupus and c-aps; I'm on the maximum dose of heparin (plus aspirin) and then some for my aps, I've gone through endless battles with both these things over the past couple of years that have resulted in some pretty big losses and nearly no wins and just when I thought I'd been left alone for just a tiny little while it appears that that's really not going to happen. No. This thing is back and it seems to be gearing up for yet another one of those battles I hate... Only this time I don't know if I have it in me to fight it... My blood tests are a mess, my kidneys, my brain, a mess and meds don't really work...

My one doc was saying on the phone today that he doesn't know what'll happen if we don't find something to stop this soon whilst the rheumy was screaming that what we keep losing are battles and that we haven't lost the war yet and saying stuff about about more experimental meds and iv steroids(but honestly how many battles does it take to call it a war...?) and my neuro suggested it might be an idea to lie back, relax and accept these diseases are what will kill me and it's probably just a question of what kind of a fight I have in me yet and how determined they are that'll show us the when of the matter. Both my internist and neuro have suggested that since no one has anything new to offer med-wise this time I might get home monitoring or be admitted for tests and monitoring and just get some good food, a lot of sleep and just wait and see.

Now, I don't want to give the wrong idea; I generally give a pretty good fight and have done so a number of times in the past with this... I generally am pretty upbeat about the whole thing too (or at least I try to be!)... I also decided some time ago that I don't want any more re-tries of meds that have failed already and definitely no more cytoxan; I also don't want to spend most of my year in a hospital so home hospitalisation sounds brilliant indeed.

However all that is theory and the reality of the situation is not that simple. Because the truth of the matter is, as simple and cliche as it may sound, that I don’t want to die. Now I realize that whatever I say won’t make the least bit of difference in this and I realize that people die from things like this or from things unlike this every minute of every day and therefore it’s really nothing unusual philosophically, globally, universally but the fact remains…I want to live till I’m 100 and then some… And I really really don’t want to have a 1 year, 2 year deadline posted in front of me…

A friend told me a couple of months ago that to be ok with my self again I have to manage to stand up and say "I am blind now" and while she made an excellent point I think maybe I need to stand up and be able to say "I am severely ill and blind now" as if there's such a thing with this as denial that comes when things go really wrong really fast then I have it! :lol: The only problem being, I have absolutely no clue how to do that...

I guess what I'm trying to say is that there seems to be a place where everything fails and crumbles and it's a very lonely place to be in. I've had the horror of being there a couple of times already and every time I am I'm just not sure whether that time will be the last or whether there's more to come and exactly how much worse it can get before it is the last. Saying it out loud (or writing it as the case may be) seems to help though and so does having other people who have seen that place read it...

Thank you for hearing me vent...I'm now going to bang my head against the wall for a little while and then I'm sure things will seem a lot better...!

Hope everyone is doing ok...! :blush:

Zoi

 

[Katharine]

Hey there

I can't add a thing as we have already talked so much but still wanted to send lots of hugs, ice cream, excellent chocolate and, of course, all the best wishes one can possibly put in a post. It is all so maddeningly, terribly FRUSTRATING but if anyone has that fight, then you do and I keep this maybe vain hope in mind that you will scare these diseases into remission. Go for it, let's scream together!!!!

ARRRRRRRRRRRRGGGGGGGGGGHHHHHHHH!!!!!!!!

:grouphug2:

Katharine

 

[Sage Hen]

Hi Zoi,

I just want to say..I am so sorry, you are having to face, another flare in your lupus.

I can't offer any advice, as I haven't the slightest clue..what you are going through..but, only good wishes, and all good things to you..and for you, Zoi.

I will have you in my thoughts.

Love,
Sandy

 

[Maia]

In spite of everything, you *do* remain a very positive person and if there is anyone who can fight off treatment resistant SLE and catastrophic APS... it is you! Hang in there, keep fighting and maybe something will come along in the near future that will work for you. I am certainly hoping and praying for you that will be the case.


(((((Zoi)))))

 

[lazylegs]

Hi Zoi,

You are such a remarkable young lady. I doubt that I could hold myself together as well as you have during all your trials. Even when you went blind that didn't stop you. With very little help you went out to conquer the world. If everything hadn't gone haywire again I am sure you would have succeeded.

During your own struggles you have always been there to help others and most had no idea what you were dealing with. I wish I had "the" answer for you now. I know you disheartened at this point but your are naturally a fighter. There will always be some part of you that won't let you give up.

It is understandable that you would rather be at home. I would have gone nuts if I had been in the hospital as long as you. Fortunately you had wonderful care. If it was me I would opt for home and going back for testing and or treatments. It does have a down side though as you well know.

You are in my thoughts and prayers daily and will be for the future.

Take care,
Lazylegs

 

[nicky00]

Zoi

Your post is of course a really difficult one to answer too and my heart goes out to you for everything your enduring as it stands right now.

I suppose ultimately there is no choice in the matter but to fight again. Perhaps you already know that you have that fight always in you and now ahead of you again and knowing how hard those journeys are.

You have no choice but to take stock, regroup and whatever the sound of that war cry may be I hope you make it loud enough for us all to hear.

I know you will.

Much loving thoughts coming up and over your way.

Nicky

 

[Joandublin]

My dearest dearest (((((((Zoi))))))) :sad:

I am so sad to read your post but I'm glad you have found your voice again because it is a beautiful voice and one which needs to be heard. Yes you are far too young to die. Yes you have far too much left to give to this world. Yes it is not one bit fair that you have such dire problems with your health. If I were in your shoes I would not only be banging my head off a wall but I would be screaming and shouting and cursing pretty much everything around me.

Words seem so inadequate at a time like this. I dont walk in your shoes so would never pretend to understand the terror you must feel at the prospect of succumbing to these diseases at such a young age. I want you to keep fighting the fight Zoi but what I want doesnt matter. What you want and what makes any sense in an otherwise mad world around you is the most important thing.

However you decide to move forward - home care or hospitalisation - just remember that you have the right to change your mind at any time. No one could expect you to know what is the best thing to do. Heck even the professionals cant agree.

I am sorry that you are in this very lonely place. Even with all your loved ones around you it must still be very lonely. I'm glad that you have found a place here to voice your fears. You are right in that saying it out loud and having it understood is so very important. This place will always be here for you Zoi to cry, scream and vent.

I sincerely and truly pray for a miracle and that you will get a break from the relentless onslaught you have been put through, but if this doesnt happen please know that you have friends here who understand that sometimes things cant just be 'fixed'. Sometimes things have to take a certain course and the important thing for us all as human beings is to be able to reach out and share a word of comfort to others who are so desperately ill.

With much love
Joan:rose:

 

[greenhaggis]

Zoi,

Love conversations in chat with you and I'm glad when youre there as you always bring a smile to my face and heart!

Lots of hugs :hug:to you Zoi, youre very brave and courageous and i'm so glad youve vented a bit, its good to let go sometimes.:yell::wall:

Sending lots of magic fairy dust your way!ixiedust:

Speak soon!

Love your friend Lesley

 

[sarah-pearson]

Hi Zoi, If i am honest i really dont know what to say to you, what a terrible time you are having:sad: I was very sad to read your post but understand where you are coming from. Please keep fighting.... you can beat this horrible disease. I am thinking and praying for you and i send you my love and best wishes.

Lots of lov sarah xxxxx

 

[Nutty]

Hi Zoi,

Your post really strikes a chord with. I've been way too close to death a few times and it is a scary place to be. I am so happy to be alive, but I think I silenty worry about death a lot.

To survive, I think I get by by having faith. I have to believe that better things are going to happen. I have to belive that they are going to get things under control and someday get this nasty disease (or diseases) into remission.

On the other hand, I also look at things differently. I realize I can't take every day for granted. I try to be positive, enjoy my kids. Live every day like it's my last. I want to have no regrets. I want to be a fighter, but I have to realize that I don't have the final say in what happens.

It sounds like your health issues are more serious than mine, but I have the same fears and concerns and potential outcome. All I can say is live each day the best you can. Look for those positives. Have faith. Pray, meditate or do whatever works for you.

I sincerely hope that they find the right medications for you and are able to get these diseases under control.

Sending you positive vibes and hope you find the strength to get through this. I'm sure you will because you sound like a very strong person. You have the will.....you go girl!!!!

Hope this doesn't sound preachy, I just wanted to share what I do to survive. You too will find what works for you.

Nutty

 

[LBH]

Hi Zoi!

Hi Zoi! You have every right to feel the way you feel. There have been a number of times when I felt the same way. And yes! I also want to see 100 years of age. But I don't know if I will get that lucky either. I think this is something that many of us feel. Especially those of us that don't see getting better. I have been the same way and hate it! I will be thinking about you and hoping that things turn around! Keeping my fingers and toes crossed that you get well soon!

 

[LoopyLoo]

((((((Zoi)))))),

I felt compelled to respond to you even though I'm not sure I can find the words. I've read all of your posts re your constant battle with lupus and have been shocked at how quickly and aggressively it has taken away your life as it was.

No one can say that you haven't fought at every hurdle - a lesser person would've given up a long time ago. Even though your sight was taken you defied all the odds to come back to Scotland and continue your studies. I always thought about the stress you put your poor Mum under with your determination to do your own thing :lol:

Are you back home now Zoi? I know the situation will be weighing heavily on your family but as Joan pointed out, everything from here on in has to be your decision. They have to respect your wishes.

I am willing with everything I have that 'something' will help stop your disease progression and that you get some respite for a while. The very first rheumy I saw on the NHS told me that I just had to accept I had lupus and not to look for a miracle - maybe sometimes we have to.

I'd like to know how you are doing Zoi, please feel free to drop me a line at any time.

Gentle hugs, :hugbetter:

Pam xxx

 

[cmfinnis]

((((((((((((((((Zoi)))))))))))))))))

Hi! My fabulous, beautiful and clever lupus friend! Honestly barely a day goes by, since I've known you that I don't think of you. We have had some lovely chats and I feel I've come to count you as a real friend.

I KNOW you've got it in you to keep fighting - just as you have before, and probably will do again. This lupus/aps is a scary illness, that's for sure but it hasn't seen the last of you yet! I do understand that you must be so tired of 'fighting' as, as you say, you've been through so much in such a short time.

I would like to give you a bit of hope though - my lupus was really aggressive for a few years and then suddenly the worm turned - it's still there - don't get me wrong - but I think as I went through my twenties (just turned 30 now) I think it did get less with time. But I had a BAD few years when nothing seemed to work and I was in hospital every 6-8 weeks on steroids, IVIG, cellcept etc. . . . . . I still have some of these issues but it IS a bit different now. I sure hope it stays this way and that it comes like this for you really really soon.

I wish I could say more, do more, be more for you Zoi, but please know that you are a lovely and important friend and a brilliant young woman. You will fight this, and you will get better. You may be blind but you have a beautiful vision for your life. Keep hold of it. We will for you.

All My Love and hugs to You,
Cathy xxxxxxxxxxxx

 

[LolaLola]

Dearest Zoi,
I am so glad you posted. You have been in my thoughts a lot. I am so sorry I can't take the loneliness away for you. If you want to chat I am always available. Please do whatever you need to do to get through all this.

You are a dear girl and you make me laugh, but you do not have to be brave all the time.

Sending lots of big Hugs,
Lola xxx

 

[sunflowergirl2]

Zoi! I'm so sorry to hear that you are having such a hard time! My thoughts and prayers are with you! Cathy :hugbetter:

 

[keebler]

(((Zoi)))

You are in my thoughts and prayers. I am so sorry that you are going threw this all once again.:hug:

I can't say that I know how you feel but I want you to know you have my support, love and gentle hugs. I have admired the spunk you have going threw all what you have gone threw.

Take care and please let us know how you are doing.

With lots of love,
Lyn

 

[Okie]

Please don't lean onto your own understanding!

Hi Zoi
Like everyone else,I admire you for all that you have gone through and also for going back to school when so many of us would have given up.

You've proven that you're a woman of substance and even when you have had your serious set backs, ---you have reached out to so many others on this site and given them insight,support and encouragement about their illness.
So many of us care about you and I'm hoping that your situation will soon change for the best!
I believe there is a Great Physician and my prayer is that HE will strengthen,comfort and help you through this difficult time.
I have had stage 3 beast cancer and systemic lupus for most of my life and have been at deaths door a few times throughout the years. However, I have learned that I can't trust my own perception or understanding of the situation because I have often been pleasantly surprised as things have turned out differently.
Like a piece of coal, we go through the fire(trials) only to emerge stronger and brighter like a diamond!
You have come through so much and have shone so brightly for many of us.
Please know that many of us are now rallying around you and praying for a you.
Your Pal
Shirley

 

[mary520]

Zoi,
I can't even imagine what you are going thru or put into words how much your words have touched me. I don't post very often but you are one of the one's who seemed to always help me when I needed an answer or just needed someone to listen. It shows what a caring and wonderful young lady you truly are to care about others, when you are going thru so much yourself.

You have touched so many people on this site with your courage. I hope a miracle comes your way, if anyone deserves one it would be you...I'll be praying for you.

Love and prayers,
Mary

 

[BigSis]

My dear dear Zoi

I have read many of your posts to other and always admired your lupus knowledge and your wisdom.
This post made me, like pam go back to your previous threads and read your history.

(((((((Zoi)))))))
that I had no idea that you were so young......so sick.....and coping with so much, just shows what a brave, unselfish and truly remarkable person you are.
I remember well how supportive you were to me in chat, when i first came to this site.

The words and love in the replies in this thread have moved me to tears.

Its time to take now Zoi......take whatever help and support you need to get you through this time. Rant and howl if you need to (I ****** would) but don't give up hope.

I will send healing hugs to you always

 

[butterfly24]

When I read your letter it made me cry. It broke my heart all you are going through, yet through it all your letter is filled with strength and courage you may not even realize you have. It also was an inspiration to me. I haven't posted much, yet I had to say that to you. I have just mild lupus, no organ involvement, just some blood clotting issues is my main risk, yet I sometimes find myself in a pity party. I try not to share that with others, but at times I've been guilty of having my party, but everytime I think of you now I'm going to pray for you and realize the blessings I do have. I am so sorry of all you pain and what you are going through. I just had to tell you that you are in my thoughts and prayers.