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How Do You Stay Positive?


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#1 Kamlesh

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Posted 03 July 2007 - 08:39 AM

All,

I know many of you are suffering from severe scleroderma, depression, and sleep disorder.
I understand staying positive and upbeat is very important.

What do you do to stay upbeat and positive?

I have tried positive reading, breathing exercises, yoga, long walks and meditation with some success. I take 60 mg Paxil for depression and 30 mg Restoril/Temazepam for sleep disorder. I was on 3000 mg of Cellcept, but reduced to 2000 mg due to improving lungs and side effects (depression, mouth thrush, gas, etc.), but started to feel more itchy. Need to talk to my doctor to see, I need to go back to 3000 mg.

I have diabetes for over 15 years, Scleroderma for about 7 years (finally diagnosed officially in 2006). My major issues are lung function, skin itchiness, depression, and sleep disorder.

Thanks
Kamlesh
Kind regards,

Kamlesh


#2 peanut

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Posted 03 July 2007 - 09:13 AM

Hum... I'm not sure how I do it?
I have 2 other disabled friends one ignores her problem and the other gets very sad. To me, neither answer seems healthy. I have tried my best to embrace my conditions, know my limitations and express my needs and emotions. Scleroderma has made me realize life is precious, short and delicate. As a result I’ve embraced a new appreciative philosophy on life and to let go of all the many things that really are not that important.

It’s also very hard for me to see people get sad for me and I don’t like being smothered in empathy.. if that makes sense? I tend to keep things light hearted.

It’s not easy… nothing that we go through is easy but we have each other.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#3 Sweet

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Posted 03 July 2007 - 10:10 AM

Hi Kamlesh,

I'm really sorry you are having such a hard time with this. It certainly is a challenge at times.

I think for me, I have a real "purpose". I have a strong religious tie that keeps me going. I surround myself with positive upbeat people that truly understand what is happening with me, and I try not to make my diseases my whole life. I acknowledge them, I deal with the symptoms and then I move on and think about what I want to do each day that will make me happy and then I do it.

Talking with people that understand what you're going through is so helpful. So maybe it would help you to post everyday here, tell us how you're feeling and see if we can help you through it.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 nan

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Posted 03 July 2007 - 10:21 AM

Kamlesh,
I am sorry that you are going through such a bad time. Ever since I was diagnosed with scleroderma I feel that I have been in a daze. I also have a very strong faith. I have found though that I really appreciate little things, like waking up each morning and being able to get out of bed. I try to stay positive because when I am not I can see how much it upsets my family. If my family isn't happy I'm not happy. I also have a chronic pain support group I go to and I go to a therapeuctic pool where I have met many people that are so supportive. I think Sweet had a great idea. If you are able try to post each day and we can try to make you feel better. I send good vibes your way. :D
Take Care!
Nan

#5 bawana

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Posted 03 July 2007 - 11:59 AM

Hi Kamlesh

Sorry to hear your having such a battle with this. As Sweet says it can be a challenge.

I have found you have to find peace and acceptance with this foe. It has to become your friend. I know it sounds strange, but it ususally works because we always accept our friends for what they are and work with them. This is much the same. Pain and discomfort is a big part of that. lol If I got up in the morning, with no pain.....lol... It would be "Wow...no pain there must be a problem some where"

You take one day at a time, plan for the future and find something good and beautiful to smile at everyday. It can be anything from a child's laughter to a butterfly sitting on a flower.
Find something good in everything that's negative and surround yourself with good and positive people.

We have our ups and downs, but this is now our life, for better or worse.
When you are having a bad moment go to or have someone come to you that you know will make you smile and put you at peace and ease.

Even put on some music, I have certain songs that I relate to people or events that have happened in my life. lol They all make me smile or chuckle. I put them all on a disc and I'll play them when no one is around to help me crawl out of this seemingly dark hole that I want so bad to crawl into.

It's different for everyone. You have to find what is the "light" for you, whether it be people , music, nature etc.
It is so important for us to stay postitve and upbeat if we are going to live with this and beat it.

Take Care, Hugs and many postive thoughts for you.

Bawana

#6 Clementine

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Posted 03 July 2007 - 02:44 PM

Kamlesh,

I cannot beat what everyone else has told you. I struggle too. My light has been my puppies. They make me smile all day long. Do you have a pet? I know it is not feasible for everyone but I highly recommend it.

Please take care and keep posting.

Jennifer

#7 Kamlesh

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Posted 03 July 2007 - 05:16 PM

Hi Peanut, Sweet, Nan, Bawana, and Jennifer:

Thank you for your kind words. Even, I have embraced my conditions. I moved to CA from IL two years ago. Still, I have not been able to develop my support structure here. Recently, I have been going through lows of my life. I have severe depression, sleep disorder, and huge financial losses. But, I need to be thankful that I have excellent weather in CA which helps my Scleroderma, improving scleroderma and two wonderful boys – one starting med school this year and one senior in high school. Luckily, I have a job which provides good medical coverage I need. For me, my belief is becoming more and more important.

Unfortunately, I do not have pets and I am not sure I can manage it..

I have tried several sleep medications, and finally found Restoril/Temazepam helping. Still, many nights I go without sleep and it gives severe drowsiness in the morning. I struggle to get out of bed on weekdays till 8AM and many weekends I will be in bed past noon.

Despite Reynaud Syndrome and joint pains, I try to walk couple of miles 4-5 times a week. I regularly do breathing exercises. Along with Cellcept, this has helped my vital capacity (FVC) to improve from 2.56 to 2.82.

I have severe GERD and my esophagus is filled with fluid. My esophagus has lost elasticity, which limits what I can eat. Cellcept gives severe mouth thrush and I can not tolerate any spices.

Yes, Scleroderma has given me a new perspective on priorities in my life

Appreciate this supporting group.

Kamlesh
Kind regards,

Kamlesh


#8 americanmike

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Posted 03 July 2007 - 05:27 PM

Hi Kamlesh--
Didn't you have really bad reflux a while back? I hope that's gotten better.

Sorry you're having problems with depression. I hope you're seeing someone qualified to handle this. You know psychological problems many times have physiological causes... so it might not be as easy as "cheering up" or "changing focus" or 'getting more spiritual" although those things can help.

Nonetheless I'll put my 2 cents in. By the way this is a great thread!!! I mean each persons psychological perspective is something we sometimes over look.

2 things For me...
I originally thought I was dying with ALS when my symptoms started (I really freaked). So I try to keep it all relative. And I just lost a friend who had MS to a fast moving lung cancer (he was gone 4 month's after an xray came back suspicious.)

The other thing that keeps me going is modern medicine and progress. There are people who have been cured by stem cell transplant. Each month more and more studies improve treatment and unravel the mystery of the immune system. Whether it's IVIG, genetically engineered antibodies, Mesenchymal cells, T regulatory cells, the list goes on and on. So I stay up beat because I know this condition is temporary, everyday I imagine the day when I'm better. WE WILL GET BETTER!!!! it's just a matter of time.

#9 susie54

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Posted 04 July 2007 - 03:09 AM

I have really enjoyed reading the responses on these. I find I only have to look beyond myself to find someone who is dealing with more than I am. I get frustrated with arthritic problems of the hands which will not allow me to do what I want to. When the lung problems hit , it makes me realize how precious life is and when the vascular problems hit, I realize how quickly life can change with this disease. I have MCTD> with a strong vasculitic component/ SO HOW DO YOU STAY POSITIVE?

Well, not always. There are times I just get so low but I try to find some little thing to go forward with that can brighten my day. I keep looking forward to the future and am now painting instead of teaching water aerobics.
I was blessed with a grandaughter this year and that in itself is an inspiration.
I always walk my dogs when I can and still lift weights and work on my core.
My garden is a love of mine and it is doing great. Each day I try to think of one person in my life that I could reach out (even with a phone call) and brighten their day. Helps me in the long run. Susie54

#10 Sharonvandee

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Posted 04 July 2007 - 03:18 AM

Thanks for posting Kamlesh

Big Hugs

I too am struggling with this as are most of us at some stage I spose.

Staying positive is hard when your life is spiining out of your reach and it often takes time to reflect and try and see what is positive that is coming out of all the choas.

The support of this group has helped me get through.
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#11 whirlway

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Posted 04 July 2007 - 03:31 AM

Kamlesh, staying positive is probably a struggle for everyone withan autoimmune disease. For me, having a good faith foundation has been a tremendous help. My family and their love and support also boost me up. Although we don't all live close, we still keep in touch on almost a daily basis, either through e-mail or phone. All of my kids (adults) have cell phones and whenever they are driving, they usually call me. (The do have systems that do not require to be handheld, otherwise I wouldn't talk to them) lol
One other thing that helps me is my hobbies. I do needlework, plus make crocheted rag rugs. I used to give them all away, but recently found a local outlet for them, a friend of mine owns a kitchen store, so she now sells them. It is always thrilling when she calls and says she sold another rug. Sometimes I am so busy withthe rugs that I don't have time to think about being sick.
Take one day at a time and try not to dwell on the bad things in your life. Having sclero is part of my life, but I don't make it my life, I deal with it and then go forward. I have a Native American heritage, so I tell all my friends that don't see how I do it, 'I get up in the morning, put on my warpaint, and get on with the day'. This almost always gets a laugh out of them and that is the best medicine in the whole-wide world.
~whirlway


#12 jefa

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Posted 04 July 2007 - 06:17 PM

Hi, Kamlesh. So nice to see you posting again. There are so many ways that negative energy can gain a stronghold with this disease. It is particularly difficult when you have others depending on you for financial support. It was particularly difficult for me to face having to give up working both on a financial and social level, but I have made many adjustments and am beginning to cope better each day, especially with the support of this forum and its thoughtful and caring members. Two years ago, almost to the day, I was sitting at home feeling sorry for myself when an injured cockatiel landed on my second story windowsill. Bringing him into my life gave me something to focus on besides my own aches and pains. There are times when caring for him seems a bit of a bother, but mostly he has brought joy into my existence that makes the pain and discomfort easier to put up with. He now has the run of the house like a dog or a cat and has established himself as a full member of the family.

It is heartwarming to see the many ways all of you have of coping. This is a great thread. Thanks for starting it, Kamlesh, and thanks to all of you for being part of this oasis of warmth.
Warm wishes,
Jefa

Carrie Maddoux
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#13 Elehos

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Posted 05 July 2007 - 09:01 AM

Oddly enough, it's baby (smaller than nickels) painted turtles that keep showing up here, and I'm now known as the Turtle Rescue Lady. Getting the focus outside of ourselves wherever possible does help. The other night, for example, my husband was patching our driveway, and all I could do was to sort of flop on the ground and smack them down with a small hammer, but it's so good to give a hand wherever possible, and to feel useful in any way. It's not easy to readjust to the changes in the body, but if I don't try now, one day I'll look back and kick myself for not doing whatever possible while it was possible (Barefut said that, too!).

Hope that you revive your passions soon!

Elehos

#14 barefut

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Posted 06 July 2007 - 02:51 PM

Hi Kamlesh,

It is hard to stay positive. Especially when, as Mike said, there may be physiological factors to our mood.

I am like Sweet in that I try to just deal with each symptom as it comes yet not dwell on it. I like to live in "denial" as much as I can - that is I just go on as if I don't have sclero.

I have 2 boys ages 5 and 9 to keep me going so that helps. In addition to driving me to the funny farm, they also keep me laughing.

I recently took up reading novels again - a nice escape. I am also a big fan of humor. Gotta have it.

I get a comedy station I like to watch when I have the time. There are a lot of good books by comics and humorists too.

I think the key is to escape to something you enjoy whether it be jigsaw puzzles, reading, watching comedies, getting out in nature, or even as Jen suggested taking care of a pet (they take care of us too) As long as you can take your mind off of scleroderma for awhile it helps a lot.

I also love gardening. Getting my hands dirty, pulling weeds (when my hands and back let me) is satisfying work to me. I love to see the before and after of what I have done. And then sit back and watch the flowers grow.

Making time to do for yourself something you love to do is an important way to stay positive.

I hope you can do that.

Take Care,
Love,
Barefut

#15 RememberingToSmile

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Posted 07 July 2007 - 04:26 AM

Some of my thoughts -

I appreciated reading all the responses in this thread and I hope people keep posting more on the topic.

I've gone through several stages for keeping positive... today, I focus on appreciating all the small things to the fullest - like having good music to listen to or tv or magazines to read. having time to go back and read books from my youth. Still being able to smile with my family even though I want to hide away in my darkened bedroom...

When I get sad, I make myself remember how good it feels later to know I am still able to "bounce back" But when I am overwhelmed, I allow myself to close down for a bit, then make sure I leave the house on an errand to get my circulation going and get my "game face" on.

Also- I often refer to the cocoon I've built around me. I tend it all the time and whenever something or some thought starts to get me anxious or reactive, I refer to it outload ("wait - you are invading my cocoon") pull back and make sure it stays in tact...

Another phrase I love is "stop being so hard on yourself" So many people really are just too hard on themselves. Happy and good enough is better than stressful perfection.

Lastly, Kamlesh, I wish you patience with getting your meds right. Depression and anxiety are tricky and it takes time and attention to always make sure you are on an effective mix of meds. Don't be hard on yourself and if one thing isn't working for you, keep talking to the doctors and try the next change.

-RTS

#16 WestCoast1

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Posted 07 July 2007 - 05:47 AM

Hi there Kamlesh~
Thanks for this post...I was just thinking about this yesterday. I can't understand why I would be bummed out when everything else is going alright! On the other hand I guess that just being so tired and fatigued...I can't find the energy to enjoy it.


This site really offers so much support for me. Everyone here has great advice for enjoying the little things that add up to so much in our lives. Thanks.
*WestCoast*

********

#17 Vee

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Posted 07 July 2007 - 12:25 PM

Kemlesh,

I firmly believe that positive thinking has gottem me this far. Don't get me wrong, I have my down days, but when they hit I let it and move on. I try to look at everything that I have instead of what I don't or what I've lost. And I always, always keep in mind that there is always someone worse off than me. I went thru the denial of being sick, then the mourning of losing the person that I used to be, then I got mad, then came the exceptance. Some days Scleroderma has it's way with me and keeps me on the couch, and somedays I wrap it up in a ball and throw it on my back and tell it that it's coming with me today, I've got too many things to do, but I do it knowing that I'll have to rest the next day to catch up and do it again in a few days. It all balances out. Try to find something to be thankful for everyday, even if it's just the fact that you woke up that day. But know that you are doing it for you. You have to love you before you can let others in. Take the time and do for you.

Positive thoughts your way! :D
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#18 epasen

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Posted 11 July 2007 - 04:59 AM

People in my life keep me positivie <: I wouldn't survive without them! Also successing and interests, excersicing... <:

#19 sueinvabeach

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Posted 17 July 2007 - 06:58 PM

Right now staying positive is an extreme struggle for me. January 07 brought Diabetes, March 07 brought Morphea, June 07 brought ovarian cysts in my 14 (15 next month) daughter, and July 07 has brought Renal Cancer to my husband.

I don't sleep, napping at best, worrying about both of them, itching all the time from the patches on my abdomen and underside of my wrists. No time to go to my doctors because I have to keep everything going for everyone else. My co-workers and best friend are the light at the end of the tunnel for me. They absolutely refuse to allow me to go thru all this alone. Even if it's sitting on hold for me while I run to the ladies room.

Crystal my best friend ;-) has already donated a week of vacation time to me so that I can be home with my husband once he has his kidney removed. And there are more lined up at the door. Between ordering/delivering dinners, to just a "hey, what ya doin" phone call in the evening....giving me a reason to sit and "do nothing" for a few minutes.

You know the old phrase "what next.".... I not only dread what could be next, I absolutely am TERRIFIED of what might be next.

I am learning to lean on other people for things. Not trying to be SuperWoman/Wife/Mom/Employee. But it's hard.

All of you take care.
Asthma 1998, Diabetes 2007, Morphea 2007, Fibromyalgia 2007.

#20 peanut

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Posted 17 July 2007 - 11:43 PM

Hi Sue,
Wow you have a lot on your plate. I really do hope in the midst of it all you take time for yourself - if not for you then for your daughter. You are extremely valuable to your family. There is a great OTC line of itch lotions and bath/shower oil I've been using. If you're interested I can PM you. It is also great that you have wonderful people as your support system. This is so important. Have you looked into FMLA?

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...