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SHAUNYXO's Photo SHAUNYXO SparkPoints: (3,786)
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7/17/14 2:53 A

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Flora, I'd really like that. :)

Ladies, thank you so much for the warm welcome. A flare kept me away for a bit but I'm back and doing well. I hope you're all well, as well.

Edited by: SHAUNYXO at: 7/17/2014 (02:57)
***Shauny***

~I am a Lupus Warrior~
MCTD:Lupus/RA,Sjogren's,Raynaud's,Fibr
o


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X_MONICA_X's Photo X_MONICA_X SparkPoints: (28,497)
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6/23/14 10:13 P

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Thank you! I will do that.

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BWCAGRL's Photo BWCAGRL Posts: 3,400
6/23/14 9:58 A

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Hi Monica!
Sounds like you are dealing with a lot right now. Glad you found the team. Feel free to check out older threads for information, or start a new thread with any questions you have. It can take a long time to get any kind of diagnosis so keep taking good care of yourself.
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Melissa

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6/22/14 6:52 P

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Hello and welcome! SLE is hard to diagnose, but hopefully you have a doctor you like who can help. Summer can be hard on us, so remember to wear a hat!

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6/22/14 4:34 P

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Hello,

My name is Monica and I've been a member of Sparkpeople since September 2013. I've come to your group because I have a deep gut feeling and by research that I may be suffering from Lupus. I have a lot of the symptoms that showing at a mild stage. Somedays, it feels quite severe the symptoms. I am on an anti-inflammatory diet and trying to do the things that help relieve and not aggravate flare ups. Glad to find a group I can join to help me understand better and to get the help and support from others.


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~ Monica ~

Edited by: X_MONICA_X at: 6/22/2014 (16:35)
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BWCAGRL's Photo BWCAGRL Posts: 3,400
6/10/14 10:03 A

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Great to see you posting here again Vana!

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Melissa
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VANALADIEL's Photo VANALADIEL Posts: 2,342
6/9/14 2:09 P

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Hello again! I have been doing my Spark points every day and reading articles but dont always get on the boards. I am working now 6 days a week and find the time hard to stop and just post about and see how everyone is doing.

I am doing very well right now except for my Eczema but it will be under control again soon or someday, I hope.

So hello again and I will try to pop in more often!

Vana emoticon emoticon

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6/9/14 10:31 A

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HadesKitten...welcome to the team!

Several people recommended Vit. B complex to me a few years ago and it did not really work. However, last year I was able to get off a Vit. D prescription and just take a high dose of Vit. D daily. Then I added Vit. B back in and it seems to help ;) When I keep up on my supplements I feel better, but I know everyone is different so keep trying things until you find what works!
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Melissa

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5/26/14 9:10 A

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I used to have a problem with drinking caffeinated pop too much, wanting a jolt of energy. I don't like the taste of coffee and tea isn't enough of a hit. A nutritionist told me to drink power smoothies instead....I think it works if I drink them consistently. Drinking one doesn't give me a boost, but drinking them every day seems to make me feel over-all more energetic. I use Vega One powder in mine.

myvega.com/products/

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5/24/14 7:46 A

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Thank you!

The major thing for me is my lungs. :( I am prone to bronchitis like woha and it feels like every time I train for a long run, there it is. Otherwise, I do ok!

I would like to know.. how do other people deal with Fatigue??

Last year I was drinking enough coffee to knock out a small elephant (alright.. sugar flavored coffee!) and that was limited success. I can't do energy drinks anymore.. they tend to give me panic attacks.

Is there a natural way to help fight it?

Exercise helps some, but it's still a struggle to push through. Does anyone else have any ideas?

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5/23/14 9:47 A

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Hello and welcome! What a story! I'm so sorry about your friend Michelle.

Sounds like you are living mostly well despite the SLE! You didn't mention an organ involved, so that's fortunate.

People here have a wide range of SLE experience, so we're here to help answer your questions or offer empathy!

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5/23/14 12:46 A

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Hi everyone! I found this team through another spark user this morning and decided to join.:)

I am a 33 (almost 34!) mother of two. I grew up not really knowing what lupus was or what it was about. When I turned 18, I met an amazing woman on boards for writers named Michelle. Michelle was amazing. She had lupus. For years, she would share with me some of her struggles with the disease, help me to educate people on what it was.. and we became very close. We were good friends for about 10 years.. When I was 6 months pregnant with my first child, I found out she had died from complications of the disease. A few months before her 49th birthday.

Then two years after my second child was born, I found myself with hands that had turned black as if I had been playing in news paper.. Or had put on a cursed ring from harry potter. My doctor said this was Raynaud Disease. After a few more test, he told me that was likely happening because I had Lupus. At first, it felt like a death sentence because of what I knew happened to Michelle.

I was frequently tired as if I hadn't gotten any sleep the days before. My joints hurt sometimes very heavily and frequent resp infections (often happens when I start running .).
I had been living with it for awhile before he said anything, so I figured, I could keep on living the same way as before.

Anyway. Just wanted to say hi and thank you guys for letting me join this group.


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BWCAGRL's Photo BWCAGRL Posts: 3,400
5/21/14 10:28 A

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Floradeb...Welcome to the team! So glad you found us!
There is a lot of wisdom on this team, so please feel free to reach out whenever you need support or encouragement! Keep posting and getting to know some folks ;)
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Melissa

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FLORADEB's Photo FLORADEB SparkPoints: (224)
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5/19/14 9:52 P

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Shaunyxo, sounds like you have been through a lot. I too, know what it is like to have my fitness taken away by lupus. Once I started gaining weight, I got depressed and gained MORE weight and stopped trying. I'll be glad to be your buddy if you like so we can get back in shape together.

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5/19/14 9:50 P

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Hi everyone. I'm making a return to SP because my life is changing in many ways and I want to get in shape. It's very difficult with lupus, so I will need all the help I can get.

MAGNOLIA416's Photo MAGNOLIA416 SparkPoints: (63,036)
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5/13/14 8:47 A

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Welcome!

You have some pretty complicated and serious health problems, sorry to hear that. But it sounds like you're making the best of it. Writing a romance novel!!

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5/12/14 9:37 A

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Welcome Shaunyxo! I'm so glad you've found the team, but not glad you have so much to deal with. Keep posting and checking out team threads. There are a lot of supportive people who also deal with some of what you deal with. Please let us know how we can help you along the journey!

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Melissa

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SHAUNYXO's Photo SHAUNYXO SparkPoints: (3,786)
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5/12/14 4:26 A

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Hi. To begin, I'm a happily married woman with 4 amazing kids and 1 awesome grand daughter. I'm 41 years old. I used to kickbox and do yoga/pilates at least 4-5 times per week. I enjoyed my athletic, curvy body and the feeling I got from being in shape. In 2009 I was diagnosed with Fibromyalgia. In 2012 I became disabled and was no longer able to work so I retired from the medical field. Shortly after, I was diagnosed with Lupus, Mixed Connective Tissue Disease, Sjogren's Syndrome and Rhaynaud's Phenomenon, and am photosensitive (I cannot tolerate sun/heat). My weight has skyrocketed due to lack of activity and the meds which accompany the fight against autoimmune disease.

I'm now trying the Paleo diet as a lifestyle change aimed at reducing the inflammation in my body. Hopefully this will help me to manage my symptoms.

I spend quite a bit of time reading, and binge watching shows on Netflix with my aforementioned husband. I'm also in the process of writing my first romance novel.



***Shauny***

~I am a Lupus Warrior~
MCTD:Lupus/RA,Sjogren's,Raynaud's,Fibr
o


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4/20/14 8:48 P

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Hi Doctracy!
Welcome to the team! Sounds like you have been through a lot, but I hope you are feeling like you can manage the pain and get back on track. Thanks for posting here. I hope you enjoy poking around the team threads a bit. Please feel free to keep posting and getting to know folks here...we look forward to getting to know you!
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Melissa

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4/20/14 6:39 P

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Hello! I'm Doctracy. I have antiphospholipid syndrome and osteonecrosis in my knees and ankles.
I had stem cells/ core decompression of both knees last fall. I'm now on Coumadin to keep my blood thin and help my bones to heal I also just started plaquenil for joint pain.
Now I need to lose my weight so that I'm not stressing the joints.

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3/22/14 9:35 A

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Hi Francine! Welcome to the team! Looking forward to getting to know you a bit on the team threads. Please let us know how we can help you along your journey!

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Melissa

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3/18/14 9:29 A

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Hello Francine, and welcome!

Sounds like you've had a really tough go of it, for such a long time.

We're glad to have you hear! Of the regular posters here, we seem to have very different experiences with SLE but of course we have a lot in common too. For me, the most life-threatening part is kidney involvement. I had some really rough years with that which also caused serious heart problems. And weight gain from high doses of prednisone. But now I'm mostly healthy day-to-day by the standard of my new normal, take all my meds and get enough sleep.

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3/18/14 12:02 A

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Hi, my name is Francine and I just joined today.

I was diagnosed with Lupus in 1991 and went on disability in 1992. I always had medical problems. I had 2 children and both were difficult pregnancies and deliveries. After my second child I was hospitalized for over a month. This was before I was diagnosed with SLE.

When I was finally diagnosed and the rheumatologist read my records, he couldn't believe that SLE wasn't caught sooner. I probably had it as a teen. In addition to arthritis, it has also attacked my kidneys. I was given chemo therapy back in 92 for that.

In the past 20+ years, I have gone from a wheelchair to a cane to just walking slowly. Now I sometimes need a cane, but usually do with out it. Exercise is difficult for me but I try to walk every day and do some chair exercises.

In 2001, I was told I also have fibro.

I can't take any anti inflamatories, so that is a problem. I just try to deal with it one day at a time. I moved to Florida in 1999 to get away from the cold weather up north. I do much better here, but of course, I have to avoid the sun!

April Goal: I feel that I need another month at the same goals.
5000 steps a day
Chair exercises twice a day


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3/4/14 1:37 P

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emoticon Francie!

My birthday is July 27th too!!!!!

Sorry to hear about your injuries and pain. Sounds like you're a good patient with a lot of self-awareness!

You've lost 15-20 pounds, that's awesome!

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3/4/14 12:37 P

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Hi everyone. My name is Francie. I live in the NE corner of Arkansas. I am 631/2 yrs old (64 July 27th) and a retired teacher. I have been married for almost 42 yrs (August 5th) I was diagnosed with lupus about 10-12 yrs ago. Mine is not the worst. So far it only affects my joints and skin. However, I do think it may be affecting my bladder- very overactive. I really have to be careful about what I use on my skin as far as soaps/body washes, lotions, shampoos, make-up, etc. I have lots of rash flare-ups. being a candida carrier doesn't help that either. Lupus has decided to also affect my muscles. It weakens them to the point of them pulling very easily. I have just gotten over a badly pulled pectineus muscle of right leg (connects pubic bone to inner thigh) and now am dealing with severely pulled medial collateral ligament of right knee, patellar tendon, and part of the quadricep muscle. I didn't have to do anything strenuous for it to happen. It just seemed to take place as the other one was healing. I need to do exercise so badly in order to help weight loss, as little as there is, but can't due to all these issues. I move about in house as much as possible and do my own shopping when I have to but it doesn't take long for the pain and constriction (tightness) to return. They have not found any inflammatory med I can take due to either allergic reaction or digestive issues from it. I just deal with best I can using natural supplements. Dark tart cherry juice concentrate helps pretty well, especially my joints. I can't use MSM or chondroitin due to allergy. I can't use steroid due to reaction on heart & breathing Only thing I can tolerate is cortisone shots which I get every 3 months. last one I had in January didn't do much. Will see what the one in May does. I have learned that if I eat as much gluten free foods, I do better. I also try to stay away from milk. I drink Silk brand plain unsweet Almond milk. I need to lose 150 lbs and so far it doesn't seem like I will ever make it. I can lose 15-20 lbs and then it just stops dead. I am open to any suggestions from anyone. Does anyone take chelated magnesium? Doc told me to start doing so. I take 400mg daily. It seems to help. I also am on 1200 mg liquid filled absorbable Calcium plus VD 3 and 2000 mg cold pressed Evening Primrose Oil.

Francie
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2/4/14 10:49 P

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Hi Carrie,
One good place to start for answers about Lupus is www.lupus.org
Everyone is different when it comes to symptoms and treatments, but many people experience skin rashes, fatigue, joint pain and/or swelling, mouth and nose ulcers, headaches or migraines, frequent fevers, frequent colds, and longer recovery periods from illnesses or infections.
You can also search some of the older threads in the forums to find topics that interest you. Over the years many people have shared good information on a variety of questions and topics on this team.
Of course, feel free to post new questions as you like...I am sure others have similar questions.

I was diagnosed about 8 years ago and I have to tell you that this team and another lupus team I belong to are what have kept me going during this journey. The people I have 'met' on lupus teams have helped answer questions, inspired me, supported me, and have just 'been there' to understand what I might have been going through. The support on SP has been my second best source of support after my family.
You can also check to see if there is a Lupus foundation in your state...they might also have resources and support groups for you too.

Gentle hugs to you and please let us know how we can help you,
Melissa
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WERSPBUDDIES's Photo WERSPBUDDIES Posts: 1,561
2/4/14 2:13 P

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Hi I'm Carrie , I just found out from my Dr. that I have early signs of Lupus. I don't know what it is, but I do know how I got it, from a blood clot that I had. Can some one tell me the symptons. THankyou

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10/3/13 10:02 A

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Thank you Melissa emoticon

You never walk alone,
Your loved ones, God an Angels are all around you, you just have to be willing to be open and willing to hear and feel their love. Kristine
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10/2/13 10:52 A

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Thank you Melissa emoticon

You never walk alone,
Your loved ones, God an Angels are all around you, you just have to be willing to be open and willing to hear and feel their love. Kristine
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9/29/13 8:02 P

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Welcome 88KMAC!
So sorry you've had such a bad relapse to deal with, but it sounds like you're on the right track! Please let us know how we can help you achieve your goals...and feel free to jump into the threads and huddle!
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Melissa

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9/29/13 7:16 P

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Hello guys emoticon been in remission for 25 years and doing good feeling good then something happened in my life and it reared it's ugly head once more, it was one heck of a ride for a year and a half, finally of my steroids which is a love hate relationship and find out tomorrow if I can come off my methotrexate . So now time to get my life and health back.

You never walk alone,
Your loved ones, God an Angels are all around you, you just have to be willing to be open and willing to hear and feel their love. Kristine
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8/19/13 6:47 A

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Welcome to the team MRSBENNETT2!
Hope you are getting back on track and finding support here. Feel free to poke around old threads for information or anything else you need, and continue to post new threads ;) Keep Sparking!
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8/17/13 10:28 P

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Hello all, I've been on Sparkpeople for quite a few years but just found this group. :) I was recently diagnosed with lupus and Sjogrens, although I've probably had it for more than ten years. Within the last year, weight loss has become IMPOSSIBLE for me, and that's what landed me at the clinic having an ANA blood test because I had a savvy young female GP who put two and two together. Right now I am on a low dose of Plaquenil and it seemed to quickly resolve my sore hand muscles/bones and some of the gritty eye problems. I really need to get healthier even though weight loss might not come along with it, so here I am again! My Fitbit is charging and I'm starting to track eating again tomorrow.

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7/23/13 9:03 A

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Welcome to the team Aphrodite ;) Keep up the positive attitude!

Melissa
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7/23/13 4:14 A

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Hi other Sparklers(that's what I call us!) We can shine even when we have Lupus. It's not easy having this disease that manifests itself in so many "random" ways, but take heart-you are not alone!
I am glad that I found a Lupus group on Spark because we already have something in common, and I know we can glean from one another.
I always say I have Lupus, but it doesn't have me.
I also have several other connective tissue diseases, so some times I can't exercise, such as today. I have decided not to beat myself up any more, and just do what I can when I can. Does that make sense to you? I hope that you will be encouraged today, it's 1:08am and I can't sleep, so I thought I would just write a note.
One thing that helps me is that I try and focus on others. Today I helped a friend who is having her own health crisis, her first ever and I am thankful that having Lupus, Rhenaulds, Sjogrens, Fibromyalgia, Osteoporosis, Kidney disease, liver disease, heart surgery, tendon surgery, mobility issues, back fractures, because I understand other's pain. What a joy to enter into their suffering. I am not certifiable, just I believe in making the best of a situation that I can't control.
So here's to living life with abandonment, taking time for yourself, relishing good friendships, and a loving family. Here's to a better day, pain management, and joy in the little things. Here's to you my new friends, and co-sufferers. I am glad we found each other! emoticon

Edited by: APHRODIDTE at: 7/23/2013 (04:15)
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4/29/13 9:46 A

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Welcome to the team Valerie!
Sorry you have to deal with all this...a lot of folks here know how hard it is so continue to reach out to people. If you are looking for something specific, just post a new thread. I've noticed that people's involvement on the team can be cyclical as they feel well and don't feel well so be patient with yourself and with people here.
Good luck on your journey and let us know how we can encourage you!
Melissa

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4/28/13 7:48 P

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Welcome to the team, VSerenity! Sorry you have this confusing illness too, but there's hope of living well in spite of it! I've been really, really sick a few times and now I'm living almost normal life (with lower doses of medication).

Any questions?

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4/27/13 5:22 P

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Hello, my name is Valerie and I was diagnosed with lupus
and dermatomyositis last year. This is soooo overwhelming.
I am trying to educate myself to maintain a healthy quality
of life.

Edited by: VSERENITY at: 4/29/2013 (10:55)
Tomorrow we begin again.


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4/11/13 9:40 A

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Welcome, LORIJBUG! I'm a long-time prednisone user, too! Since 1998.

I've been on a low dose for a few years and it took until about 6 months ago for the high dose to get out of my system...but I tell you there is hope! I'm now feeling stronger and the pounds are falling off, slowly but surely.

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BWCAGRL's Photo BWCAGRL Posts: 3,400
4/6/13 9:45 A

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Welcome everyone!
Please let us know how we can support you in your journey!
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Melissa
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LORIJBUG's Photo LORIJBUG Posts: 462
4/5/13 7:53 P

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Hi! I'm an RN who recently had to go on disability due to lupus and myasthenia gravis. I am currently trying to lose weight so I can get alittle more active so I can live alittle. I have been on steroids for about 13 yrs now and I tell you what, this sh** is getting old! Just wanted to say hi. HI! emoticon

R1 7-26-14


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MAGNOLIA416's Photo MAGNOLIA416 SparkPoints: (63,036)
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3/21/13 9:05 A

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Wow, that's quite a journey!

emoticon to our team!

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3/20/13 9:22 P

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Hi! I just joined this team because I suffer from lupus. I'm 56, married and have 3 sons (ages 38, 25 & 21). I started my diagnosis for SLE in 2003. I had been being treated for depression for several years and the psychiatrist monitoring my medicines thought I was becoming intolerant of Prozac. She switched my drugs 5 times in a year. The last one was the drug Effexor. It started to seem like my depression was lifting so she kept increasing my dosage. At the same time my regular doctor started doing tests and found my ANA was a bit high. About the time my regular doctor wanted me to see a rheumatologist, the Effexor started causing me to vivid dreams and hallucinations. Anyway, I stopped the Effexor cold turkey...though they tell you not to...because I was afraid I would commit suicide after waking from one of my dreams.

My ANA readings and sedimentation rates have increased over the years. My last blood test in late 2011 showed an ANA titer of 1:640 (speckled) with a sed rate of 78. I was put on steroid treatment in March 2010 and stayed on them (with my usual Plaquenil) for 2 yrs. My health insurance ran out at the end of 2010 and I tried to keep up with my doctor appointments, tests and medicines without it. Financially I couldn't handle it anymore, so I have been without treatment...other than heat and ibuprofen...for about a year. Unfortunately, the state of Arizona does not provide Medicaid for adults without minor children since 2011 and my husband's dependent coverage through his work is $500 a month. On top of everything I have type 2 diabetes that is out of control. Hopefully losing weight will help with that.

Rather than aiming for being perfect, just aim to be little bit better today than you were yesterday.

CJ
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3/7/13 10:26 A

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Oh hi! I just noticed this now.

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SLE took a lot out of me and I still have troubling test results, but I feel pretty good! Hope you do too!



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2/10/13 2:04 A

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Hello! I'm a new member ready to make some positive changes in my life to take back my health and happiness. I'm on this journey to bring back my sense of self, learn to love myself again, and to get back the zest and energy for life I once had. I am 38 and have been struggling with my weight for about 9 years (since being diagnosed with Lupus). I have SLE and have been on Plaquenil and Imuran since my diagnosis. I am happily married (14 years) and have a beautiful 9 year old daughter. My family means the world to me and I want to enjoy every wonderful moment with them.

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1/30/13 10:47 A

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Kristine and Steph...welcome to the team! I hope you have a chance to poke around and find some helpful threads! Please feel free to ask questions and post and reach out to people...I know not everyone checks in everyday, but we are all around at one time or another!

Sharise...welcome back! I was away last week so I'm catching up here and it's great to 'see' you again! Let us know how we can help support you! Keep up the great work!

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Melissa

Melissa
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1/25/13 7:31 P

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Hi all, just started sparkpeople a couple days ago. I am wanting to get down to around 140.. heck i'd settle for being under 160 at this point :) . I have Ulcerative Colitis, and have had for 13 years. I've had testing done and part of the Lupus blood work stuff came back positive but others did not... so for right now I am not diagnosed as having Lupus.. the Lupus symptoms I have could also be contributed to the UC.. seeing a rheumotologist in Feb.. so we shall see. Anyhow, just trying to workout and eat healthy given my body doesn't like to cooperate a lot. I have a 7 year old very active boy.

Steph


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SEWMOM73's Photo SEWMOM73 Posts: 119
1/25/13 11:48 A

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Hello group! I was off the boards for quite a while and ... well you can tell by my weight gain, how well that worked out for me. emoticon
I'm back Sparking I've been tracking my food, and working out, I'm also trying to follow a healthier, more whole food diet. I've got to tell you I'm feeling better already.
I turn 40 next Wednesday (Uggh) but I'm going to be 40 and FIT not 40 and FAT!
I'm going to try and make it a point to contribute more to the team. I need support to make this work.


~Sharise~


I can do all things through CHRIST wo strengthens me. Philippians 4:13


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KDEMAN88's Photo KDEMAN88 Posts: 67
1/13/13 9:15 A

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Hello guys :) My name is Kristine and I was diagnosed with Lupus at the age of 15 and it sucked by the age of 18 was finally pain free for the most part now 22 years later I have been bedridden for the past 6 months and on strong medication and starting Methotrexate on Tuesday. I became a Reiki 3 Practitioner to help myself because as we know the awful meds we have to take to help us even function on a daily bases are so not good for our bodies.

You are never alone on your journey, God your angels archangels and loved ones are always by your side.
BELIEVE


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BWCAGRL's Photo BWCAGRL Posts: 3,400
1/10/13 12:21 P

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Hi Pam! Welcome to the team...so glad you've found us!

There are some older threads you can peruse to see if the topics might have helpful information for you. And if you have questions, please feel free to post them on one of the team boards.

I hope you'll find SP to be as helpful as so many others have...there are a ton of tools here so let us know how we can help you along your journey!

Take good care of you,
Melissa
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Melissa
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1/10/13 11:00 A

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HI my name is Pam and i was recently diagnosed first with Lupus then changed to undifferentiated connective tissue disease along with fibro been off work since May. Have been struggling with heel problems since April and has gotten worse so can barely walk . along with hip and leg issues need to lose the weight.
Am on Plequinel and gabapentin plus blood pressure meds and blood thinner for blood clot issues.
hope can get more info on all this and lose some weight!

" Don't Worry about anything, Pray about Everything!!" GOD IS IN CONTROL!


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BWCAGRL's Photo BWCAGRL Posts: 3,400
9/13/12 9:58 A

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Welcome everyone!
I hope you are starting to find some of what you need here...don't be afraid to post a new question or respond to some of the threads. You can also look back in some old threads if you are looking for specific information.
There are many incredible people on this team...so i hope you will connect with a few and find the support you need. A lot of us can't post everyday, but we do our best to check-in as often as we can...so please let us know what you need.

Hugs,
Melissa

Melissa
Lupus-Team Butterfly co-leader


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LORIB3's Photo LORIB3 Posts: 3
9/12/12 5:43 P

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Hi my name is Lori and I have been diagnosed with Polymyositis (attacks mainly muscles) but I am sure I have overlapping lupus. Without a muscle biopsy my Dr is not sure...but the PM is just as devastating. Its only been a year but I am taking Methotextrate and weaning off Prednisone...started out at 75mg and have reached the 5mg milestone a year later. I also have gained 40 lbs due to lack of mobility and the drugs...I have been on and off spark but now I want to get my act together so I can aim to go back to work. looking forward to chatting with y'all.

Lori :)


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WOCKANDWOLL Posts: 1
8/22/12 2:32 P

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Hi all! Just wanted to introduce myself. My name is Briana, dx with SLE, fibro and CFE all in the last two years and after multiple flares (some of which landed me hospitalized) I'm finally stable and ready to win my life back from the disease!

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8/12/12 7:32 P

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Thanks Vana :-)

I am really looking forward to getting to know everyone.
Katie

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VANALADIEL's Photo VANALADIEL Posts: 2,342
8/6/12 9:03 P

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Jen, KTROCKS and Ginny welcome to the group! Just remember that there is always a light at the end of any flare tunnel. The good days will out number the bad eventually. As you learn how you respond to treatments and what works best for you, it will become easier.

Learn to do the best you can for yourself, with diet and exercise and then accept what limitations you have and don't let anyone pressure you into doing more then you are comfortable with.

You will be your own best friend and advocator. We will always be here for you as encouragement and those who have come through or are making our way through the hands we have been dealt. It is not always fair nor will it ever seem fair but there is a reason we are who we are and why we have this disease. If we did not understand or know what a struggle it is for each of us there would be no one to speak to who would get how we feel. But we do understand and do know that some days it is just easier to stay in bed and cry then to face the world. On those days at least come in here and let us know that you are being challenged so we can listen and perhaps help you to find a way to deal with that days challenge.

Never give up!!

Vana emoticon emoticon

If you have the choice to sit it out or dance: I hope you'll dance!!

MoonLight Dancer

Sister of the Twilight
Daughter of the Moon

Autoimmune conditions Team Co-Leader

Lovers of Middle Earth Team Leader

I Need Sleep Team Co-Leader



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GINNY1215's Photo GINNY1215 Posts: 4,087
8/4/12 12:11 P

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Hi everyone:

Joined the team a couple of months ago when I was "officially" diagnosed with rheumatoid arthritis and lupus though thus far my labs have not made a positive confirmation. I had suffered like many of you for 10-15 years with pain and multiple joint surgeries but was never tested or referred to the appropriate doctor. Had fever and malar rash and increased joint pain for at least a year which my family doctor told me would be a waste of a rheumatologist's time for me to be referred to them. Thank God a broken leg one year ago led me to an orthopedic doctor who suspected additional problems and ran tests and made the referral. My rheumatologist has been wonderful and I am still in the learning phase of this disease process. At the same time I was diagnosed with lupus and rheumatoid arthritis, I found I was hypothyroid. My "new" medical doctor and my rheumatologist both tell me I will probably be unable to lose weight. My rheumatologist says he thinks my body is in shock from all the pain and problems bombarding it at the same time and is hanging onto every pound. He has encouraged me to keep moving as much as possible, eating right and getting plenty of rest. Have been battling recent stress and flare but made the personal decision to get some daily exercise in whenever I can physically manage it and to make nutrition key in my life. So far I have dropped ten pounds since diagnosis and would love to join all of you and living as healthy a life as possible for as long as possible. Best wishes to all.

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7/30/12 9:08 P

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Hi Everyone,
I am glad to find you all here. I was dx with Lupus and sjorgens about a month ago. Although, like I am sure a bunch of you, had symptoms for about 8-10 years. I am in the middle of my first official "flare up", (I think). Just learning the ropes along with having to loose 30lbs. Any tips and info would be greatly appreciated.

Nice to meet everyone emoticon

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FEISTYSOCCERMOM's Photo FEISTYSOCCERMOM SparkPoints: (1,489)
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7/30/12 1:50 P

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Hi! I was just diagnosed today with Lupus. Well, actually, I had sort of been diagnosed a month ago, but today my Rheumatologist confirmed the diagnosis. Somehow I hadn't let it enter into my mind until today that I could have it, so I'm in a bit of a shock. Last week I was diagnosed with Rheumatoid Arthritis, and we're still waiting on the results from my thalassemia test. Since I have both RA and Lupus they're going to start me off with methotrexate and see how I react to that. I'm hoping to avoid prednisone if possible.

About me (minus the crazy health issues) - I'm 35, work full-time, married for almost 13 years and have two sons. I both play and coach soccer, and I'm hoping some day to get back to competing in triathlons.

~ Jen
Done Girls: Red Hot Heart Breakers Challenge
My goals ~
Start weight ~ 203.5
One Voice (7/25) ~ 198 - DONE!
Relaxation (8/15) ~ 192
Labor Day (9/3) ~ 188
World Heart (9/29) ~ 185
Total loss aim ~ 18.5


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VANALADIEL's Photo VANALADIEL Posts: 2,342
6/24/12 4:18 P

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Welcome to the new members here!

Yes Prednisone is hard on the body and I find it is not water weight gain. It is hard to lose those pounds but it is not impossible, just a very long and hard road. It all depends on the dosage as to if you will gain weight or not. A very low dosage might not affect the weight as a higher dose does. One thing it is makes you very hungry and the other is that it messes with the bodies natural functions. So staying off of it is the best advice but when one is in a major flare or just getting things treated for the first time, it usually can not be totally avoided.

I have also found that part of Lupus' grip on ones life is part mental in that if you are determined not to let it slow you down or take you down and defeat you, then it wont! I have dealt with this disease for 43 years now and have found that my mental attitude many times can lessen or help me to return to a better health in the long run. I guess one must become a fighter and not a whiner. It is not always easy to not complain with one is very miserable but offering to assist those who are going through what you have been through already can many times empower us to take better care of ourselves and focus on something else.

Don't get me wrong. I am not saying that any of us complains all the time or even more then we should. I am just saying you may notice what I have about myself over time. Helping reach out to others helps me to not concentrate on the discomfort I am in and many people do not even know that I have a constant struggle with a serious illness, unless I tell them.

My love and continued prayers go out to you each that you will find a place for yourselves in your lives where you can be in a healthy mindset and helpful to others around you. Many of you are already there. Power to the people with Lupus!!

Vana emoticon emoticon

If you have the choice to sit it out or dance: I hope you'll dance!!

MoonLight Dancer

Sister of the Twilight
Daughter of the Moon

Autoimmune conditions Team Co-Leader

Lovers of Middle Earth Team Leader

I Need Sleep Team Co-Leader



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TIFFANYGREENE's Photo TIFFANYGREENE SparkPoints: (2,822)
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6/24/12 12:16 P

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Hey there Spacebot!
I'm new to Lupus and autoimmune diseases...and well, this whole thing!

I know how you feel about the Prednisone. That stuff is awful! I was on it for four weeks (at 40 mg, then 20 mg) and everything was fine until about the third week. My face puffed up and I think (I've been too afraid to get on the scale) I've gained about 15 pounds! Nothing fits, my moods are swinging like crazy, my face is still puffed up and everything is bloated and swollen.

What a terrible medicine!

The fact that a lot of it may be water weight might be a little comforting...however, I it just makes you feel like complete crap.

Hang in there!

-Tiffany

"Need to, can do. Have to, will do."
"Be not afraid of going slowly; be only afraid of standing still"

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C-MON3Y's Photo C-MON3Y SparkPoints: (83)
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6/11/12 11:19 A

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HELLO!
I finally found a group fit for me! My name is Celina and I was diagnosed back in 2010 when I was 18 and now I'm trying to get back to living the healthy lifestyle (and to take my meds LOL). My 21st birthday is coming up and I'm almost graduating so I would like to look hot hot hot!

I'll need a lot of motivation so feel free to add me!

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BWCAGRL's Photo BWCAGRL Posts: 3,400
5/3/12 7:34 A

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Welcome to the team!
Let us know how we can help you along the way...if you feel like you're in a flare up be gentle with yourself. Doctors can be so hard to deal with. I hope your new rheum will be respectful and will actually help you. Please feel free to post questions or whatever else on the team boards. Glad to have you with us!
Take care,
Melissa

Melissa
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STARGAZER672's Photo STARGAZER672 SparkPoints: (1,337)
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5/3/12 6:38 A

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Hello.

I am so glad to find this page. I was diagnosed with Lupus about 14 years ago. It seems that each time I find a Dr that I really like - they leave. My family Dr. sent me to a specialist about a year and half ago to restart treatment for the condition. The Dr. took one look at me and told I didn't have lupus because I looked to "healthy". Recently, my health has begun to go down hill. Increase in joint pain, anemia, frequent headaches and zero energy. I'm being referred once again to a Specialist/Rheumatologist. I continue to try to exercise even with the pain but the last few days have been impossible. Thanks again for allowing me to join this team. Hope everyone has a wonderful week!

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3/9/12 12:11 P

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Welcome aboard Spacebot1!
Glad you've found our team. But not glad you've had so much to deal with. Keep doing your research and ask a lot of questions. If your rheum doesn't like it or won't answer your questions, find another one who will work with you.
Prednisone often causes weight gain so if you are able to taper at some point (under a doc's care) to a low dose that might help. Check out the workout thread in the forum above...I think I posted a link to the SP chair workout which worked well for me this week.
I was shocked too when I started SP and tracking all my food at how low my protein was. So good for you for tracking and taking that important step! Way to go!

A lot of dealing with Auto-immune diseases is trial and error on almost every front. Foods, exercise, meds, doctors, emotions...you have to stay diligent and find what works best for you. And then when things change, be flexible and keep adjusting to what is working for you. Keep focusing on what you CAN do. I hope we can be here to support you and encourage you!
Thanks for posting and I look forward to getting to know you a bit more in all the forums!

Melissa

Melissa
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SPACEBOT1's Photo SPACEBOT1 SparkPoints: (25,521)
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3/8/12 12:17 P

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Hello Sparkworld

I've landed here after becoming increasingly frustrated with a certain extremely well known *watching your weight* company. I lost 45lbs in a very short period of time and then hit a giant brick wall and have been trying to bust my way through it for a few months now, without much success. I was really shocked when I first started using the sparkpeople tracker to see how skewed my diet was. Even though I thought I was being really healthy and within my *marks* I was very carb heavy and hugely low on fat and protein. So I'm happy to be here and feel like I'm eating a lot more healthily even if the stupid scales still aren't moving.

In March last year I started experiencing severe joint pain and mobility problems and have now had a tentative diagnosis of Mixed Connective Tissue Disease - have so far tested positive for RA, Sjogren's, Reynaud's, Scleroderma and Lupus. My rheumy thinks I'm more of a lupie given my extreme fatigue, joint inflammation, hair loss, headaches and depression but beyond that he's not told me much apart from "Take these pills".

I'm taking lots of really unpleasant meds, including Methotrexate, Plaquenil and Prednisolone as well trying very hard to exercise as much as I can. Exercising is difficult at the moment; I'm having a lot of trouble walking due to inflammation in my feet and have to use a stick, so I'm doing lots of non-weight bearing stuff. I'd love to be able to do more, I'm actually really enjoying it even if it's not having the dramatic effect on my weight loss that I'd hoped for. Still have about 40lbs to lose before I reach the fabled healthy weight range. Would love to hear from anyone facing the same sort of challenges, or just anyone who thinks I look good as a Na'vi
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2/25/12 10:27 A

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Hello to everyone!
So glad you all have found the team! Several team leaders have been ill recently so I apologize for the delay in welcoming everyone and keeping threads fresh on the boards.

But...we are all here for you! If you have questions, please start a thread/post your question. There are many new folks who I'm sure have the same questions. And anyone who has been around awhile and dealing with auto-immune issues I'm sure can lend some perspective.

Keep sparking and keep checking back on the team page for encouragement!
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Melissa

Melissa
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LUPIESUZ's Photo LUPIESUZ SparkPoints: (5,102)
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2/21/12 8:25 P

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Hello Everyone!
I am new to this group, so wanted to say hello! I am looking for some Lupus friends to help encourage me to get my butt moving! :) I was diagnosed with Lupus in 2010 - it was a quick diagnosis- and I don't like it one bit! I am sure no one does. It has been a rough almost 2 years. We have been dealing with a lot, not just Lupus. I finally got meds that are working for me - Methotrexate (hope the drug companies start producing more of it so there isn't a shortage!) and starting to feel better. I never was a big on exercising, but I gained a lot of weight. I thought I would give this a try and see what happens, so far, more energy and I look forward to coming home and exercising! Weird! LOL. So if you want to be my new friend, send me a message, would love to talk with others! I look forward to "meeting" some of you!

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2ANEWLIFE's Photo 2ANEWLIFE Posts: 12
1/16/12 7:34 P

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Hi Everyone, I have Mixed Connective Tissue disease--primarily Lupus and some Scleroderma. I had a bad flare in the fall and my lungs are being attacked big time. I've been taking cytoxan for the past 2 months and am told will probably do so for a while. I'm beginning to feel better and Rheum said time to get active again. I also have to drink LOTS of water to keep the cytoxan flushed out of my bladder. So, I'm happy to have found this group for support and accountability. Even though we are all different with the illness we share the common thread of knowing & understanding how this illness can affect us. We can do this!

2ANEWLIFE


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MARYPEZ's Photo MARYPEZ Posts: 1
1/14/12 7:06 P

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Hi, I have SLE, I was diagnosed in '07, but have been experiencing lupus pain since '01. I have a malar rash pretty bad, but have gained so much weight taking prednisone, I just decided to live with the rash and extra pain. I still take the methotrexate, but would like to try another medication. I also experience mouth sores, joint pain, reynaud's, nerve pain, and IBS. I'm hoping that joining Spark People will not only help me reach my fitness goals, but also help me gain more energy. I hope to add many of you as friends as well! :)

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1/7/12 11:09 P

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Officially I haven't been diagnosed but my test results seem to have my regular doc concerned. I'm seeing a rheumatologist january 18 and i'm petrified. it almost feels like i'll go in and i'll officially receive my death certificate or be told my life will never be the same and i'll have nothing left to look forward to. i just wanted to admit i'm frightened but the pain, stiffness, headaches, odd rashes will only get worse. and i still haven't found in my life that makes me happy.feeling the black side of blue. emoticon

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12/28/11 3:21 P

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Hi everyone. I recently received my diagnosis of SLE and I am learning quickly how debilitating this disease can be. I have a lot to learn and I'm glad I found this team on Sparkpeople.

SUZYQSBREAD's Photo SUZYQSBREAD Posts: 189
12/3/11 1:48 A

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Hello, my name is Suzanne (obviously, lol)...i've had lupus since i was in the 6th grade when i got my first butterfly rash...they didnt realize that is what i had until YEARS later...i was officially diagnosed about 10-yrs-ago...Doing pretty good aside from a new pain issue that has developed the last month or so...once i get used to this one, i'll be right as rain once again emoticon

I have been managing my own treatment for the last 6-yrs almost, as the side effects from the lupus meds were killing me! They were worse than the lupus itself...the prednisone was the i think the worst...it made me gain around 170-lbs for which i had to have gastric bypass in 2006 to get rid of...around that time i quite taking my lupus meds, did tons of research with lots of support from the "natural community" and came up with my own regime to manage my lupus...i havent looked back since!

I've been a member of SparkPeople for 5-yrs and am devoted to this site as it has been instrumental in my keeping the weight off and in check emoticon Anyway, thank you for having me and i look forward to getting to know you all! emoticon

Gastric bypass is only a tool...abuse it and you will fail...

BEFORE BYPASS: 330-lbs
LOWEST WEIGHT: 120-lbs
CURRENT WEIGHT: 145-lbs


 Pounds lost: 190.0 
 
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DUCKYONTHERUN's Photo DUCKYONTHERUN SparkPoints: (26,961)
Fitness Minutes: (13,294)
Posts: 1,816
11/7/11 3:41 P

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Welcome! All of us here know exactly what you are going through. Please check out all the other topics here as you may find some answers. Ask away too.
As to my own experience with Lupus, my flareups used to last a couple of weeks. Once I lost my excess weight, my flareups only last a few days. That is my own experience. All of us here are different.
So welcome and I hope you will feel comfortable here with us.
Faith

Faith (and Love)


 Pounds lost: 45.0 
 
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NRHYMES's Photo NRHYMES Posts: 108
11/7/11 11:57 A

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Hi there-

I am currently undergoing testing and treatment for Lupus. I am 26 years old. In some ways I think the Lupus prevents me from getting on that elliptical...especially days when I flare up. My biggest hurdle is the pain. Sometimes it seems like the more active I am, the worse I will feel that evening.

I have a pain reliever as needed, but I do not want to be medicated. Right now, I'm currently waiting to see another doctor for a second opinion. I've had some bad experience with RA Doctors prescribing me something instantly and that is not my goal.

I come here for support and to be around others who know what I'm going through. It's hard to explain to someone what the pain feels like when they aren't going through it themselves. And I'm tired of people telling me it's all in my head. That's the one thing I've been told--by a doctor even, and I'm fed up.

Thank you for having me.

"No one knows what he can do until he tries."Publilius Syrus

“If you can find a path with no obstacles, it probably doesn't lead anywhere.”



 current weight: 192.0 
 
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DUCKYONTHERUN's Photo DUCKYONTHERUN SparkPoints: (26,961)
Fitness Minutes: (13,294)
Posts: 1,816
10/21/11 11:42 P

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SEXYKP36, emoticon emoticon emoticon emoticon
We are so happy to have you join us. We are one big family here. Feel free to talk about anything here. Oh, and thank you for your service. I spent 11 years in the Marine Corps and my husband is still in the Marine Corps. He's been in 28 years. All of us here at Team Butterfly are special and unique. You too are special.
Many of your questions can be answered by reading and moving around on this site, but don't hesitate to ask.
So take your shoes off, sit back and relax with us.
Faith

Faith (and Love)


 Pounds lost: 45.0 
 
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SEXYKP36's Photo SEXYKP36 SparkPoints: (1,086)
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10/21/11 10:52 P

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Hello everyone! I am new to Sparkpeople and new to this team. I am active duty Air Force and I was diagnosed with lupus in Sep 09; specifically lupus nephritis. This past year has been pretty dramatic as well as traumatic for me. Due to the steroids I gained about 50lbs. I was literally gaining about 10lbs a month until the doc started to decrease the steroids. I used to take Cellcept but now I am doing Cytoxan infusions once every 3 mo. I have had two blood clots; one of which was just found 14 Oct 11. I am sick of the way I look with all the fat face, swelling, striae and swollen abdomen. So I finally decided to try and change the way I look by eating healthier and getting back to exercising. The inflammation put exercising on the back burner for a while but I want to find a program that will allow me to get back to my pre-lupus weight/appearance and hopefully counteract the fatigue. I'm looking forward to learning and interacting with you.

 current weight: 194.6 
 
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DUCKYONTHERUN's Photo DUCKYONTHERUN SparkPoints: (26,961)
Fitness Minutes: (13,294)
Posts: 1,816
10/21/11 9:00 P

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Hi everyone and welcome! I am sorry I did not welcome you all sooner. Seemed like I had issues going on and was wrapped up in it. For that, I am sorry. But welcome! I know you will find support and friendship with us.
Faith

Faith (and Love)


 Pounds lost: 45.0 
 
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AYLEA56's Photo AYLEA56 SparkPoints: (27,913)
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Posts: 1,282
10/11/11 8:31 P

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emoticon aboard Newbies and a returning newbie. I am glad you joined this team. I have found lots of support and wonderful friendship here. I'll be happy to help out in anyway I can.
So please check out all the topics and feel free to ask questions and for support.
emoticon

Aylea

May every Day be a Blessing to You!

I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble.
~ HELEN KELLER


 current weight: 6.2  over
 
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