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Nonna
06-25-2011, 06:25 AM
I don't know if anyone has noticed but I don't like change. I'm dull; I just go through Life doing the same old thing. Lupus has brought too many changes to my Life. I think that's my downer. I want things not to change but things do change; people change and move on. I'm still me, but I just can't do like I did. I think it has really finally sunk in. I'm me but I'm not the same me. It's time to move on; but when you afraid of change and it make you throw up. What do you do? Find a hole? Sorry I just want to cry and cry; but I don't know how. Guess I need to watch a sad movie.

Sorry about the rant on my positive thread; but I can't seem to find a positive thought in my head. Instead of the usual message from the Doctors office- results are normal or they are the same: I got the please call us message. You know that always means news that you're not going to like.

So here I am for the first time in months wanting the weekend to be over so I can get this over with.

I will survive and go forward



***Moved this out of another thread because I think it would be a good topic on its own-Mari***

lovedbyHim
06-25-2011, 08:55 AM
Hello dear Nonna. I am the kind of person who loves change as I see it as a new opportunity for something that may be wonderful. However, what this disease has done to our lives is just plain awful as far as the suffering, financial issues, loss of jobs, careers, dreams,etc. Cry darling with all that is in you. Then start to look for the little things that bless your socks off. This journey is hard and long and ever changing, but you're not alone. We have days when lupus has us and days when we have lupus. Bless you dear. I just lifted a prayer for you. Tammy

tgal
06-25-2011, 09:07 AM
It is so ironic that you posted about change today. I have tried for a week to write a post kind of like it but I could never get the words out.

As most of you know I have been more silent then usual this last week. I have been in bed with bronchitis brought on from my vacation the week before. We vacationed at a place that my family has gone to since I was about 10. It is my favorite place in the world and last weeks trip looks like it will be my last.

Like Nonna I don't like change. I try very hard to stay positive and I have said through all of this that Lupus won't ever "get" me. I will be me, I will simply have this disease. I found out during these last two weeks that I was wrong. For me at least, it did get me. It got the old me and I wasn't ready for that. When this disease is in its meanest mode it takes more then just modifying old behaviors. It means completely changing and I really didn't want to do that. I really thought that with a few modificatons such as sunscreen and long pants I could live the same life I had before I would just look a bit more funny. This trip taught me differently. This trip taught me that I can't make Lupus go where I want and do what I want to do. I have to adjust my desires and think of this nasty disease and that really ticked me off.

Whether I like it or not Lupus has a say in my behavior. Going out in 100 degree weather (even when covered completely) to play in the river water is no longer in the cards. That is my old life and Lupus doesn't play well with it. Lupus is now my partner in life and it took this to make me see that. Just as I won't let my life be all about Lupus, Lupus won't allow this life to be all about me. As hard as it was to come to that understanding I believe that it was good for me. It was good because now plans can be made that both Lupus and I can accept and, hopefully, can be enjoyed by both.

lovedbyHim
06-25-2011, 09:40 AM
Beautifully said Mari. What more can I say? This week I cried because I realized my new backpack that was purchased to go on the AT trail with my dear friends, can never be used by me now. I hate this reality. What I have decided to do was give my pack to one of the girls in our group who struggles financially so I can say, some good has come out of this mess too! Hugs to all of us with lost dreams and stinky change!

ritzbit
06-25-2011, 09:47 AM
I worry about the changes I will have to make in the future like having far fewer children than I've always wanted (coming from a huge family) and maybe not making it with the career I want. I try not to think about it much though because it makes me sad. Those are talks for therapy lol

Peridot20_Gem
06-25-2011, 09:52 AM
Hello Toni,

It dow hurt to rant mate..it's helped clear your mind abit and at 42 you'd think i could move with the times and enjoy change but i hate it also something is brought out and as soon as you've got used to that another thing, now my hubby is 10yrs older and loves to see change and can move with it quickly...i find the whole situation alot to take in especially if your notup to it.

tgal
06-25-2011, 10:01 AM
Beautifully said Mari. What more can I say? This week I cried because I realized my new backpack that was purchased to go on the AT trail with my dear friends, can never be used by me now. I hate this reality. What I have decided to do was give my pack to one of the girls in our group who struggles financially so I can say, some good has come out of this mess too! Hugs to all of us with lost dreams and stinky change!

That is an awesome idea about giving it to her!

Please understand that I firmly believe that new things will come and that I will enjoy life. I wasn't ready to get rid of a few "favorites" from the old one

lovedbyHim
06-25-2011, 10:03 AM
This forums the best therapy I've ever seen. The best trained therapist is one who has "been there" ritz. I'm in the mental health field and many counselors don't understand the way we do. This is good and healthy.

Nonna
06-25-2011, 01:17 PM
I so agree with you about this forum. I don't know where I'd be without y'all

Gizmo
06-25-2011, 04:48 PM
I don't know if anyone has noticed but I don't like change. I'm dull; I just go through Life doing the same old thing. Lupus has brought too many changes to my Life. I think that's my downer. I want things not to change but things do change; people change and move on. I'm still me, but I just can't do like I did. I think it has really finally sunk in. I'm me but I'm not the same me. It's time to move on; but when you afraid of change and it make you throw up. What do you do? Find a hole? Sorry I just want to cry and cry; but I don't know how. Guess I need to watch a sad movie.

Sorry about the rant on my positive thread; but I can't seem to find a positive thought in my head. Instead of the usual message from the Doctors office- results are normal or they are the same: I got the please call us message. You know that always means news that you're not going to like.

So here I am for the first time in months wanting the weekend to be over so I can get this over with. I will survive and go forward

Nonna, I don't know why doctor's offices do that - leave a message so you can stew all weekend instead of hanging up and calling again on Monday. Poo! I hope you are able to distract yourself some while you wait for Monday to come. What a yucky way to spend the weekend.

I'm struggling with change and loss, too, but some of it is just part of life - stuff that everyone goes through. Even if we were all robust and full of vigor, our lives would still change. Our kids still leave home, we still get older and can't do as much as we used to, we could still lose our jobs... ad nauseum. I'm not downplaying your loses or struggles with change because I feel the same way. For me personally, some of the change I am fighting is inevitable and part of the natural order. It sucks to get older. It is even worse to get older and have lupus because you have those loses much earlier than your friends.

If you need a good cry, how about a tear jerker movie that has a happy ending or uplifting message? I'm drawing a blank on movies now. Anyone have suggestions?

Gizmo
06-25-2011, 04:53 PM
It is so ironic that you posted about change today. I have tried for a week to write a post kind of like it but I could never get the words out.

As most of you know I have been more silent then usual this last week. I have been in bed with bronchitis brought on from my vacation the week before. We vacationed at a place that my family has gone to since I was about 10. It is my favorite place in the world and last weeks trip looks like it will be my last.

Like Nonna I don't like change. I try very hard to stay positive and I have said through all of this that Lupus won't ever "get" me. I will be me, I will simply have this disease. I found out during these last two weeks that I was wrong. For me at least, it did get me. It got the old me and I wasn't ready for that. When this disease is in its meanest mode it takes more then just modifying old behaviors. It means completely changing and I really didn't want to do that. I really thought that with a few modificatons such as sunscreen and long pants I could live the same life I had before I would just look a bit more funny. This trip taught me differently. This trip taught me that I can't make Lupus go where I want and do what I want to do. I have to adjust my desires and think of this nasty disease and that really ticked me off.

Whether I like it or not Lupus has a say in my behavior. Going out in 100 degree weather (even when covered completely) to play in the river water is no longer in the cards. That is my old life and Lupus doesn't play well with it. Lupus is now my partner in life and it took this to make me see that. Just as I won't let my life be all about Lupus, Lupus won't allow this life to be all about me. As hard as it was to come to that understanding I believe that it was good for me. It was good because now plans can be made that both Lupus and I can accept and, hopefully, can be enjoyed by both.


Mari, I am sad for you as I read this post. For me, having to give up family activities because of my disease is the biggest loss. You expressed your feelings so well, and you are such a rock for the rest of us here. I hope you are able to eventually find some peace and get your family to start a new tradition that won't make you sick or exclude you. Sending you a big hug! If texts and words can travel through the air, why can't hugs?

rob
06-25-2011, 07:03 PM
If you need a good cry, how about a tear jerker movie that has a happy ending or uplifting message? I'm drawing a blank on movies now. Anyone have suggestions?

Two movies come to mind-

The Majestic

and

October Sky

Both are films that will make you cry, but they both have very uplifting messages as well, and both have really good happy endings. They are also a "family safe" PG rating, if that matters.

tgal
06-25-2011, 07:10 PM
Two movies come to mind-

The Majestic

and

October Sky

Both are films that will make you cry, but they both have very uplifting messages as well, and both have really good happy endings. They are also a "family safe" PG rating, if that matters.

You know I never saw The Majestic until about a year ago. Great movie! Another one of the good cry movies with an uplifting message is Fly Away Home. Ash and I always catch it when it is on

rob
06-25-2011, 07:17 PM
Beautifully said Mari. What more can I say? This week I cried because I realized my new backpack that was purchased to go on the AT trail with my dear friends, can never be used by me now. I hate this reality. What I have decided to do was give my pack to one of the girls in our group who struggles financially so I can say, some good has come out of this mess too! Hugs to all of us with lost dreams and stinky change!

I did the same thing. I had two, and I gave them to people who could put them to good use. I was happy to help, but I hated having to give them up.

steve.b
06-25-2011, 10:54 PM
the realization that life as we knew it will never return, was the hardest thing for me to accept.
i still struggle, as i watch my family play, (without me).

i have had to stop work, relocate to afford to live. stop some of my hobbies and pass times.
i buy toys for my children, that i used to buy for myself, (canoes and water sports)

i cant even change a tyre without needing a rest. cut wood with a chainsaw, for 10 minutes and i have to stop.

i used to be a workaholic, spend all weekend doing things around the farm.

now i sleep for 12 hours a day,
and watch the world pass by. but i have learnt how to enjoy it.
i have learnt to enjoy watching my grandchildren play.
i have learnt how to slow down and speak with people, not to people.
i have learnt how to communicate with people.
i have learnt how to communicate with my horses.
i have learnt how to be a better me.

lovedbyHim
06-26-2011, 02:51 AM
Steve this says it perfectly! I truly love in a deeper way because all the distractions are removed. I notice the little things more now. I take time to help someone who is not feeling well. I notice the woman in the wheelchair and take time to touch her arm and ask how she is holding up. My new abused dog is so dear to me as I understand pain.
I honestly don't know how much longer I can work given the fatigue and side effects of the meds, but if that time comes I will probably grieve that too and then try to discover the good that can come of it. Someone should write a book about this world of suffering and changing.

steve.b
06-26-2011, 03:10 AM
you can keep the book idea in mind.............
for when you decide to quit working full time.

lovedbyHim
06-26-2011, 03:37 AM
Have you seen my grammer Steve? I have a learning disability which tortured me through school! But Linda could! She's a teacher!

steve.b
06-26-2011, 04:54 AM
"spell check"
computers are good to hide our limitations

sharpiessave
06-26-2011, 05:03 AM
My best friend and I were talking about change the other day. (We now refer to my AI situation as "The Mess") Apparently I used to have a hero complex. It wasn't something I was aware of at the time. But I do remember constantly rushing around from house to house, helping all of my friends and family with various life stuff.

I hate that I'm mostly unable to do that anymore. Or maybe I should say yet. "I'm so sorry, but no, I can't help." It's so against my nature. It's so important to me to be there for the people I love, through anything. I still have all kinds of guilt about not getting to do the smallest things for them; watching my neice for a few hours by myself, taking my goddaughter to dance class, helping Mama take out the trash.

I think that perhaps that's been the toughest part of this illness for me. The pain is bad, the fatigue is bad, heck, the whole thing is bad. But nothing is worse than the feeling that I'm letting the people I love down. I know they know it's not my fault, and they are extremely understanding about the whole thing. But I'm still incredibly irritated at The Mess for tucking me inside my own life, wrapping me up in itself, and taking me further and further away from the people I love.

rob
06-26-2011, 06:38 AM
All the changes were hard for me too. You guys and your stories sound so much like my own in so many ways. I loved my work, it was my dream to have my own business, and to actually be able to build the things I'd dreamed of building since I was a kid. I miss the sense of satisfaction, I miss the excitement.

Then there was the change of sudden emptiness, of no more friends, and of a wedding that would never happen. Seeing my long time girlfriend and soon to be wife with somebody new, moving ahead with life, and me being left behind, was one of the most painful things I have ever had to deal with. Actually, I didn't deal with it. I gave up on life, and I gave up on myself.

I'm lucky to still be around to talk about it all. My life has changed in so many ways since those days. That was only 7 years ago, but it feels like a hundred years. Things have worked out in ways that I never could have imagined. Extraordinary ways. The painful memories are still there though. Most days I'm able to keep them filed away in the back of my mind where they belong. But, sometimes a song I hear, or a smell, a picture, makes them suddenly come back to the front of my mind. But I no longer have to face them alone. I have people who care. People here, and people in my daily life.

And, I'm rambling again...

Rob

tgal
06-26-2011, 07:29 AM
All the changes were hard for me too. You guys and your stories sound so much like my own in so many ways. I loved my work, it was my dream to have my own business, and to actually be able to build the things I'd dreamed of building since I was a kid. I miss the sense of satisfaction, I miss the excitement.

Then there was the change of sudden emptiness, of no more friends, and of a wedding that would never happen. Seeing my long time girlfriend and soon to be wife with somebody new, moving ahead with life, and me being left behind, was one of the most painful things I have ever had to deal with. Actually, I didn't deal with it. I gave up on life, and I gave up on myself.

I'm lucky to still be around to talk about it all. My life has changed in so many ways since those days. That was only 7 years ago, but it feels like a hundred years. Things have worked out in ways that I never could have imagined. Extraordinary ways. The painful memories are still there though. Most days I'm able to keep them filed away in the back of my mind where they belong. But, sometimes a song I hear, or a smell, a picture, makes them suddenly come back to the front of my mind. But I no longer have to face them alone. I have people who care. People here, and people in my daily life.

And, I'm rambling again...

Rob

Not rambling at all. There really is such a closeness that happens when we have posts like this. These are the things that healthy people just can't understand. These are the things that I never thought of when I heard about Lupus, AI disease or disability in general. Threads like this are the reason I feel so close to all of you. This place is where I find an entire family of people that I don't make me explain. Thank you all for that

lovedbyHim
06-26-2011, 08:40 AM
Until I came to this forum I felt like there was not one person who truly understood my deep loss of who I was. I do feel a deep sense of closeness with all of you already and when someone is ill and away from the forum I miss them and wonder how they are faring. It's like we are in the trenches in a battle and when one of us gets hit, we all feel saddened by it. Thank you all for just being genuine and forthright because that is when true relationships can be developed.

Nonna
06-26-2011, 09:11 AM
Rob, I am so there with you. Sometimes the memories hurt so bad. Then I think he n
Made his decision. Am I better for it. I think so; but it still hurts after 24 years. But I have a new life and in spite of the AI I do feel better a out myself.

Mari and Tammy- how does one thank two angels bless you both


Steve I am trying to write a book on our lives any and all contributions are welcome

Nonna
06-26-2011, 09:15 AM
I still have brain fog with that post but am not going back to fix again. Problems please ask for translation of it

tgal
06-26-2011, 09:21 AM
I still have brain fog with that post but am not going back to fix again. Problems please ask for translation of it

Perfectly stated Nonna. Never forget that you are loved by so many here. If nothing else this disease brought our new family together. I know that my life wouldn't have been as full without all of you (and my phone wouldn't be so busy with my other "words with friends" junky!)

rob
06-26-2011, 09:45 AM
I still have brain fog with that post but am not going back to fix again. Problems please ask for translation of it

Since I'm fluent in "Lupese", it made perfect sense to me. No translation needed!

Nonna
06-26-2011, 12:10 PM
I seem to be thanking everyone today for their posts. We all need each other.

Tammy came up with a new saying for us:

Lupies- Groping our way through Life

Mari my fellow Word Junkie - I finally won one

lacey50
06-26-2011, 02:03 PM
I hate that my life has changed so much due to these AI"S. I hated having to retire early from a job I loved and losing people I thought were my friends. I hate not being able to do the active things I use to enjoy. But, it has allowed me to slow down and see the good things around that I never took time to notice before. I guess there is always some good in everything, it's just finding it that can be so hard. One thing that I am ever so thankful that I found is all of you. You all have made accepting Lupus easier by just knowing you are here to turn too.

steve.b
06-26-2011, 05:55 PM
well done noona.
we all need a win sometimes.

tgal
06-26-2011, 06:07 PM
I seem to be thanking everyone today for their posts. We all need each other.

Tammy came up with a new saying for us:

Lupies- Groping our way through Life

Mari my fellow Word Junkie - I finally won one

Hehe... you are close on many others my Word friend. LOL I am slacking!

rob
06-26-2011, 11:04 PM
This is really a great thread Nonna. Thank you for starting it.

lovedbyHim
06-27-2011, 02:48 AM
Well today I grope my way back to work Nonna, and the only difference in 7 days of meds and sleep is I am not napping 4 x a day. How will I pull off driving in extreme pain? If I can't do it I will call my rheumy and ask for a week off. I have a lot of vacation time I can use.

That's another thing I miss! I had to give up using vacation time to go someplace special , so I could save it for when I'm sick! But I am thankful to have it as I know it is a true blessing. Wish me luck! I'll try not to fall asleep at the wheel or lose my temper from the pain (grin).

tgal
06-27-2011, 07:15 AM
I just let out a big sigh as I sit on my couch. I remember having to do that at work. Now I just do the same thing when planning on going to the store!

lovedbyHim
06-27-2011, 08:33 AM
I am giggling in my office about your reply Mari. I always let out a big sigh whenever anyone goes on about their husband treating them like crap! I'm free at lats...free at last... thank God almight ...free at last! Yep I get ya! Well I laid the whole dirty mess on my supervisors lap and she encouraged me to just stay in my office today and get used to the load slowly. So here I am thinking of all of you on my lunch break.

Nonna
06-27-2011, 09:08 AM
Here I am......... Propped up on my bed.

Sighing and coughing away........ It's pneumonia again. At least it's not lupus attacking my lungs with fibrous tissue

Now waiting to hear from the doctor if I can go to work or not.

Change oh miserable change, I still want my hole to hide in; anyone got a spare???

Gizmo
06-27-2011, 09:27 AM
Here I am......... Propped up on my bed.

Sighing and coughing away........ It's pneumonia again. At least it's not lupus attacking my lungs with fibrous tissue

Now waiting to hear from the doctor if I can go to work or not.

Change oh miserable change, I still want my hole to hide in; anyone got a spare???

Sorry, sweetheart, I am fresh out of holes. Sounds like you are already "holed up" anyway ;o) Sorry, you probably don't feel like laughing right now, and it actually wasn't that funny. I hope your pneumonia clears us quickly, and that you are able to get some good sleep.

Can you keep in mind that this particular change (pneumonia) is temporary? Sometimes I have to tell myself that I only have to make it through whatever stressful thing I am currently dealing with. I can't look too far ahead. If I tell myself I will "never" be able to do something again, it's too much. There are 2 new lupus drugs now, so some of us may be able to cross some things off of our "can't do" list in the future!

lovedbyHim
06-27-2011, 10:38 AM
Actually Gizmo that was pretty funny "holed up" giggling. Ok Nonna, don't do what I do, and think about when you can go back to work. Rest dear girl. Your body is screaming rest. Drink lots, cough that crap up, humidifiers are great for thinning that crap and sleep to heal. We're all here rootin for ya! And don't you be stain up all night playin those games with Mari! Sleep........heal.......keep us posted. ((HUGE HUG))

tgal
06-27-2011, 11:35 AM
Here I am......... Propped up on my bed.

Sighing and coughing away........ It's pneumonia again. At least it's not lupus attacking my lungs with fibrous tissue

Now waiting to hear from the doctor if I can go to work or not.

Change oh miserable change, I still want my hole to hide in; anyone got a spare???

I am so sorry Nonna! I don't have pneumonia but I can't get over this bronchitis! I am going to try and make a trip to the grocery store but getting ready to wore me out!

Gizmo
06-27-2011, 12:10 PM
Nonna and Mari - maybe you should synchronize your watches, crawl into bed and put the same movie on your DVD. Put your phones on speaker and laugh and cry together. Just try to synchronize your coughing, too, so you can still catch some of the dialog. Seriously, I feel bad for both of you and wish I was close enough to run to the store. It really stinks to be sick when you're already sick. Take care of yourselves.

rob
06-27-2011, 03:22 PM
It really stinks to be sick when you're already sick.

That's rather profound. I like it!

ritzbit
06-30-2011, 01:03 AM
So its about 4 in the morning here and I can not sleep because I've suddenly become an emotional wreck. Reason 1: College...I keep putting off making a decision and making phone calls. I was so excited for college until recently. What if a go, take out all these loans, and 10-15 years from now Im too sick to work and have all that money hanging over my head? What if I go and can't finish it out even and have to come up with a whole new plan for my life....Reason 2: Kids..I wanted to say something earlier with all the baby posts we've been having but felt out of place talking about it because Im only 18. First thing my doctor ever said to me when my very first blood tests came back is that I had to be so careful having kids and it would be really hard for me and it would all have to be really planned. I was only 16, clearly not wanting kids, and she really freaked me out. My whole life I've always wanted a big family and I just feel like that dream I had for my life was taken away so prematurely. Thinking about the possibility of not being able to have a child, or a healthy one, really makes me upset. I was wondering who on here is anti-RO positive because I know thats one associated with pregnancy/baby problems.

I just feel like everyone I know is at a place right now where they're starting their life and going after dreams and I'm reconsidering all of mine.....

sonmak
06-30-2011, 02:24 AM
Have you seen my grammer Steve? I have a learning disability which tortured me through school! But Linda could! She's a teacher!

lol, That's the Editor's prob to worry about ;P

Nonna
06-30-2011, 02:24 AM
Ritz

I know this is hard on you. You don't have to give up on your dreams; just take them slower. First "kids" have you met someone you truly love? if not, don't worry about having kids until you do. Things "change" so rapidly anymore that the situation could be drastically different by the time you are ready. (That's why this thread is about change)

It took me 11years to get my college degree. I ended up taking one or two courses a semester. Dorm life isn't all that much fun, when you don't have the energy. I was lucky enough have a good friend who stuck with me. Check into grants, I know that there are websites listing them. Heck, check with the Lupus Foundation, they may have something set up. Sticking with grants will get rid of the worry about paying back loans.


So try not to worry about tomorrow- with "change" things will be different.

Hugs