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DENIPARKER Posts: 1,099
2/10/13 4:57 A

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Hello Caligirl674

Welcome to our Lupus group. My name is DeniParker but I go by just Deni in our group.

We have a wonderful team. We keep in touch mostly on our weekly check in. Please feel free to try it out. You will be very welcome.

Sounds like you have a wonderful family. Having this disease its very important. I myself am on the other side of life. My 2 wonderful boys are grown men now with familys of their own. My husband and I are enjoying this part of life.

Hope to hear from you again soon. Deni emoticon emoticon

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CALIGIRL674's Photo CALIGIRL674 SparkPoints: (405)
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2/10/13 1:28 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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DENIPARKER Posts: 1,099
1/5/13 4:57 A

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Hi Liz,

Welcome to the team. I,m Deni and I also have shots of MTX. You are right it is not any fun but it is the only thing that keeps the sweeling down in my hands from the Lupus.

So glad to have a new member. Please join us on the weekly thread. That seems to be where we all keep in touch.

Hope to see you there. Deni emoticon


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LALMEIDA Posts: 303,518
1/4/13 11:21 P

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emoticon

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FDNATICK's Photo FDNATICK SparkPoints: (4,294)
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1/4/13 10:48 P

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Hi, everyone, I just wanted to say hi and introduce myself.

I've been a member of SP for years, but this summer decided to give myself a clean slate, start fresh and do it right.

I'm focusing on Fitness at the moment, because I know that I can't do everything all at once, and I'm learning that fitness is a MUCH better way for me to manage pain than pretty much everything else I've tried.

I was diagnosed with Connective Tissue Disease, NOS, 5ish years ago, though my current doctor has me down as having Mixed Connective Tissue Disease. I'm currently taking methotrexate (injectable), which while it works, I'm struggling with self-injections. It's not like I haven't taken it for years, but every now and again it drives me a little nuts.

I was on plaquenil for a while but it didn't seem to work near as well as MTX. I am also *very* gluten sensitive. BUT! The good thing is between gluten free and MTX I actually have energy now and am no longer winded by going up the stairs.

Anyway - enough rambling. HI!

Take care,
Liz

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DENIPARKER Posts: 1,099
3/8/12 11:23 A

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Welcome Lalmeida,

Its nice to have you join the team. This is a very helpful team and I believe you will find the people here very understanding and very willing to help.

We all seem to check in at the weekly check in thread. Take a look and see if its for you.

Again welcome and hope to get to know you better

Deni emoticon

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LALMEIDA Posts: 303,518
3/7/12 9:50 P

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Hi, I am new to this group. I was diagnosed with Lupus in 2007 when I spent about a week in ICU with Fluid in both of my lungs and the lining of my heart. It took them a couple of episodes before they diagnosed me. I also have crohns disease. It has been a battle of ups and downs for me the past 5 years. All I can do right now is keep a positive attitude about the whole thing...not always easy when you can't get out of bed or leave the house when you are afraid a bathroom won't be found fast enough.
I was on methotrexate for the crohns and it did help the Lupus but not the crohns. I have also been on prednisone off and on causing bone loss. Luckily I have been off the prednisone for almost 1 year.

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DENIPARKER Posts: 1,099
2/24/12 9:01 A

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Welcome Lupiesuz

I could relate to your story of getting methotrexate. I use the injectable form of the med but is also hard to get now. Its the only med that works real good for my hands. It helps keep the swelling down therfore the pain also. Im so scared of not being able to get it. Can you feel for the kids with cancer? Hopefully things will get better.

We have a great weekly check in on this team. We have a great bunch who are real supportive. Check it out if you can would like to hear from you there.

Welcome again Deni emoticon emoticon

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LUPIESUZ's Photo LUPIESUZ SparkPoints: (5,102)
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2/21/12 8:24 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
1/18/12 10:19 P

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Thank you for the warm welcome Deniparker! I will be sure to take a look at the weekly thread. Thank you for pointing me in the right direction -- still on a learning curve with this site emoticon

2ANEWLIFE


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DENIPARKER Posts: 1,099
1/17/12 11:03 A

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Hi 2ANEWLIFE,

Welcome to the team. You are correct about some things are different but also the same. We have alot in common. Its a great group of people that are very supportive of one another.

I'm glad to hear you are getting better. Remember to move but take it slow to start and be good to yourself.

Again, Welcome. Alot of us talk with each other on the weekly check in. Try it out and see if you like it.

Deni emoticon

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2ANEWLIFE's Photo 2ANEWLIFE Posts: 12
1/16/12 7:42 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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ELATEDLOSER Posts: 165
5/5/11 10:25 A

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I'm trying to get him to the dr or er now, but he refuses to go because twice the er did ultrasound, didn't find anything and sent him home and told him to see his family dr. Refuses to pay $250 a pop for them to tell him that and his family dr more or less turned him over to rheumatologist. He said pain was muscular in chest and did an xray, but found nothing and told him to go get bloodwork done and come back in 3 weeks. I am having a hard time keeping him interested in going to dr. They have been treating him like this for years. I think it's been lupus all along but no one caught it until he told them daughter has lupus. So all we know is it's autoimmune, but what who knows.

Slow and Steady wins the race!!


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CAPISTRANO's Photo CAPISTRANO Posts: 3,405
4/30/11 8:28 A

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Nellee, Moms are the best! I have an awesome mom whos always been so supportive and took care of me and my kids when I was first diagnosed years ago. She's a strong lady!

MSkipper, how are you feeling after your surgery in March. Hope you are feeling great!

Elatedloser. how is your husband? Did the docs figure out a diagnosis? Are his legs better or still swollen?

Team members, let us know how you are feeling. Please check in occasionally here or the weekly check in and let us know how things are going!

Have a great weekend!
Cathy


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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NELLEE's Photo NELLEE Posts: 99
4/22/11 12:14 A

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My mom was the one who suggested I get tested becaus she noticed I had alot of th same symptoms she had(she's had lupus for 53 yrs. when I was born) and that's how I was diagnosed. My mom is who I go to for advice on pain and fatigue and we just comfort and encourage each other...keep your chin up... emoticon

FEEL FREE TO SEND WORDS OF ENCOURAGMENT AS SOMETIMES I PROCRASTINATE. GOD BLESS .


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CAPISTRANO's Photo CAPISTRANO Posts: 3,405
4/21/11 9:53 A

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Hello and welcome!
I would start with the rheumatologist visit and see what they say. They will do blood tests etc so you may have to wait a bit before getting a diagnosis. Not as many men have Lupus and it is often overlooked. We do have a member on our team, named Rick (Backmoon) who has Lupus and is one of our team leaders. Check out his profile.

A healthy diet is the best way, cutting out junk food, soda, limit sodium and processed foods will help him feel better. There are natural supplements that may help with swelling but until you know whats causing the swelling maybe you need to wait for the docs/labs etc.

Good luck and let us know what the docs say.
Cathy


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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ELATEDLOSER Posts: 165
4/16/11 4:43 P

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Hello! I myself don't have lupus, but my daughter was diagnosed 2 years ago at 22 years old, and my husband has been suffering for years and drs had no clue what was wrong with him. This past month he got ill again and mentioned to the dr our daughter has lupus. Dr is at a loss, but after he heard this he said "Well can't hurt to look and see." He has some sort of auto immune disease also, but they aren't sure what it is. We are going to rheumatologist day after Easter to see if they can figure it out. Right now he is swollen in his legs and is having pain in his shoulder. Rheumatiologist couldn't get him in any earlier. I saw this team on someone's sparkpage, and thought it can't hurt! Can diet really help? Is there anything we can do without meds to reduce the swelling? Thanks!

Slow and Steady wins the race!!


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DENIPARKER Posts: 1,099
3/11/11 11:11 A

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Hi Ilovegray,

Welcome to the team. I look forward to bloging with you and learning from you.



Welcome new frienf Deni emoticon

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ILOVEGRAY's Photo ILOVEGRAY Posts: 149
3/10/11 3:08 P

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Hello,
I am new to this team but was diagnosed about 21 years ago. I am 45 with a 5 year old....yes a late bloomer for sure!! He is a blessing and my #1 reason for getting on this ship now...I need to lose weight and gain some energy and good habits. I am excited to find others who will actually know what goes into a day for me and themselves on this road called lupus.

I have fibromyalgia, raynauds, sjogrens, RA, and thats about all i can remember at this point.



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MSKIPPER43's Photo MSKIPPER43 SparkPoints: (0)
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3/6/11 4:06 A

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Well I guess I over did it yesterday cause I am SUPER tired and sleepy today. I took a pain pill about 1 am. and some Beano/ I still have not gone back to exercising, but I hope that I at least feel more rested tomorrow. Than you for the prayers they were greatly appreciayed.

Genetics may load the gun but environment pulls the trigger.

Pamela Peeke


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DENIPARKER Posts: 1,099
3/2/11 7:01 A

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to MSSKIPPER

I send my thoughts and prayers to you. Please let us know how you are as soon as you can. Take care of you. When I had surgery once a nurse told me and I believe it Fall alsleep with happy thoughts and you will wake up with happy thoughts.

Thinking of you Deni emoticon

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CAPISTRANO's Photo CAPISTRANO Posts: 3,405
3/1/11 8:36 P

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Having surgery is definetly stressful! Sending prayers your way that all will be well and you will heal quickly. Let us know how you are doing as soon as you are able.

Meds do effect everyone differently and what's good for one may not be good for another.




Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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MSKIPPER43's Photo MSKIPPER43 SparkPoints: (0)
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3/1/11 12:43 A

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Well I agree with all the post. Some days are still better than others. I take a plaquenil, predisne, and Imuron cocktail. When they added the Imuron it helped me but that DOES NOT mean that it is for everyone. I only take 5 mg of predisone a day. I found that I am also weather sensitive, whether it is cold or hot sudden changes just throw my whole body off. I am currently on a 4-6 hr sleeping routine, and I think it has to do with the stress of having surgery planned for Thursday. They are going to do a hysterectomy.

Edited by: MSKIPPER43 at: 3/1/2011 (00:45)
Genetics may load the gun but environment pulls the trigger.

Pamela Peeke


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CAPISTRANO's Photo CAPISTRANO Posts: 3,405
2/28/11 2:21 P

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Hi and welcome to Sparks and to our team! emoticon

Most of us find the fatigue the biggest challenge. It seems no matter what you do, the fatigue is there. Some have found some relief with the supplements discussed on some of the other topics and easy, gentle exercise.

I find it takes my body longer to heal especially after surgery. With plaquenil, it takes about 6 mos. before the full effects are felt, so give it a few more months. Not easy to do when you have a family to care for. I was 30 when diagnosed and my 2 kids were 5 and 6 years old. If you can, try to get a nap in during the day and get plenty of sleep at night. Be patient and gentle with yourself. I know things can be frustratingly slow but you will learn to listen to your body and adapt to the changes. Life with Lupus can be a challenge everyday

We help and support each other here. Please explore our topics, it helps to know others are facing the same challenges.

Cathy emoticon


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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DENIPARKER Posts: 1,099
2/28/11 9:41 A

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Hi Candylnd24,

Welcome to the team. Your problems with lupus are ones we share with you. I have the sores in my mouth and also in my nose and other places I dont care to talk about. They seem to be pretty painful and take a long time to go away because of the meds they put you on. It seems to go round and round. It really helps to write in the team and get to know everyone.

Hope you have a good day and will talk soon Deni emoticon

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CANDYLND24 SparkPoints: (0)
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2/27/11 11:19 P

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Hi there! New to Sparks and New to Lupus. Im a 30 yr old nurse with 3 kids and great bf of 4 yrs in NE Ohio... The fatigue that you all know so well, has had me searching for answers for four years. Joint and muscle involvment along with horrible mouth ulcers finally got me diagnosed. I have had the diagnosis for less than 3 months. Im on plaquenil and although the joint/muscles and oral uclers seem to be improving, the fatigue is still unrelenting... So trying to get the rest of my health in order, and praying for more improvement.

CAPISTRANO's Photo CAPISTRANO Posts: 3,405
1/31/11 9:27 A

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Hi Melissa
Sorry I didn't get back to you. But glad you are feeling better now. Everyday is an adventure with Lupus.
I found the info about the supplements interesting. I have been on a few of those but not at the same time. My doc also wants me on on Vitamin B12 because she said my levels were low, which I did try for a month. I felt no different but maybe in combination with the others you suggested, will help with energy and inflamation.


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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DENIPARKER Posts: 1,099
1/26/11 5:44 A

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Good Morning Melissa,

Welcome to our group. Its nice to hear from new people. Your questions are pretty common ones when you first have lupus. I have had it now for a little over a year and am still learning. Pay attention to what your body is saying to you and follow it. Yes I find it hard to get my exercise in also. I have learned on the days my body says no so do I.

Again Welcome and its great to hear from you and hope to hear from you again.

Deni emoticon

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NOLENMS's Photo NOLENMS Posts: 16
1/25/11 3:43 P

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Thank you Cathy, I do have a question tho, maybe you can help me, yesterday was a great day, however; today I feel feverish, sluggish and very sick at my stomach. Does it have something to do with Lupus even tho its DLE or maybe I just caught a bug. Who knows, all I do know is I wish I felt like I did yesterday...LOL

Melissa

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CAPISTRANO's Photo CAPISTRANO Posts: 3,405
1/24/11 12:16 P

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Hi Melissa
Welcome to the team! All are welcome here!

It's hard for others to understand the challenges this disease causes but being tired/worn out is definetly one of them. Most of us don't look sick so it's hard to explain to others how you feel. Sometimes they don't believe you or don't think you can feel that sick.
Just take it one day at a time, learn to listen to your body and pace yourself. Not an easy thing to do because you may feel great one day and then do too much, only to suffer for it the next day.

We understand the challenges and keep each other motivated. We look forward to getting to know you better!

Cathy


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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NOLENMS's Photo NOLENMS Posts: 16
1/24/11 12:05 P

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Hi, my name is Melissa and I have recently been diagnosed with discoid lupus. Can I still join this team? I was finding it very hard to exercise because I am so tired all the time, now I know why, I do need motivation from other, because my family doesn't understand why the person who does everything needs to slow down. So I really don't get alot of motivation from them. I am starting all over with spark people, hoping I can shed some of this weight.

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CAPISTRANO's Photo CAPISTRANO Posts: 3,405
9/5/10 4:28 P

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Hello
I would like to welcome new members to our group!This is the place to say hello and introduce yourself. We're glad you are here. The more the merrier and the more support we can give and get for each other.

Life is hard enough and having a chronic illness, medications, pain....just makes things more challenging.
So how do you cope with day to day living?

Cathy


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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CAPISTRANO's Photo CAPISTRANO Posts: 3,405
4/25/10 5:25 P

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Welcome melaphantin

I guess we all face many of the same challenges. And it is a day to day juggling act. emoticon

I have been taking plaquenil for about 20 years and never had a problem with it. I realise everyone is different with reactions to meds. I know others have had negative reactions but just about any med you take out there has side effects. The only way to know is to try it. You may be fine. And if it helps then this is a good thing! emoticon

On plaquenil the only thing I need to do is have my eyes checked 2x a year because it can accumulate in your eyes. I am on 200 mg a day and so far, no problem. My eye doc says I am on a low dose and even on 400 mg a day, he doesn't think it would cause problems.

Cathy




Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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MELAPHANTN's Photo MELAPHANTN Posts: 1,551
4/24/10 11:34 A

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Thanks for the advice. It is sometimes hard not to overdo it when I feel good because I feel like I am catching up with everything I was unable to do while not feeling well.

I'm glad I found the lupus spark teams. It's encouraging to have some others to share with that understand.

Thanks!

"Fall seven times. Stand up eight."
-Japanese Proverb

Melanie N.
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www.melanienorris.stampinup.net


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DENIPARKER Posts: 1,099
4/23/10 5:27 P

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Welcome Melaphantn,

You have found the right group. Everyone here is very helpful and we all have been through some of the same things.

This disease can be very frustrating. Like you said you feel good one day but not the next. I have had lupus for only 5 months now so I am still learning also.

I have a hard time with the excersise part of sparking also. The best advice I got when I started was to do what you can when you can. Don't push yourself beyond what you can do. Maybe try small amounts and rest in between.

Hope I was helpful and again welcome. Keep up the good work and ask for help when needed.

Have a good weekend. Deni emoticon

Edited by: DENIPARKER at: 4/23/2010 (17:30)
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MELAPHANTN's Photo MELAPHANTN Posts: 1,551
4/23/10 2:26 P

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Hello. I have been exploring the discussions on this team page and found it helpful. I am 34 and have been seeing a rheumatologist. My doctor said that she "can not rule out lupus" after a series of blood tests.

My symptoms have been mild compared to most of what I have read on here. I have severe fatigue and muscle/joint pain and swelling that affects me in intervals. Sometimes I feel great sometimes I barely function through my day.

I have been prescribed plaquenil but have held back on actually taking it. I am concerned about side effects vs the benefit.

Also, I am having trouble with setting a workout routine because sometimes I can do almost anything I want and feel great but then suddenly the same routine I have been doing easily will be overwhelming and I will feel ill just exercising.

It's frustrating because the diagnosis is elusive. My doctor has decided to monitor me and feels I will have more positive lupus tests as the disease progresses.

I'm glad to know I'm not the only one facing these types of challenges.

Edited by: MELAPHANTN at: 4/23/2010 (14:47)
"Fall seven times. Stand up eight."
-Japanese Proverb

Melanie N.
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www.melanienorris.stampinup.net


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BWCAGRL's Photo BWCAGRL Posts: 3,415
2/24/10 9:15 A

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Welcome Nicole!
Enjoy your journey with Sparkpeople...keep posting and keep sparking!

Melissa

Melissa
Lupus-Team Butterfly co-leader


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NICOLETODROP73's Photo NICOLETODROP73 Posts: 10
2/22/10 2:44 P

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Hi,
My name is Nicole. I have SLE.

My goals are to focus on eating better, getting healthier and working out.


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CLASSICKELLY21's Photo CLASSICKELLY21 Posts: 153
2/5/10 1:25 P

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Thanks Cathy,

I was on Planquenil for a while but then became allergic. I had the textbook drug rash everywhere, it was horrible. I was on Methotrexate for 8 years and at the highest dose for 6. It stopped working and I switched to CellCept. I've been on that for a little over a year at top dose and it seems to be working well. I have been slowly weaning the prednisone but it takes forever. I am down to 7.5 mg and hope that one day I'll be down to 2mg as a maintence dose. The Dr has already told me I've been on it so long, I'll be on it forever.

I am doing okay with changing my eating habits but last week I was at the hospital all week with my Grandfather, who had surgery and my Dad is still in the hospital from surgery in August. THe running around makes it hard to sit down and have a proper meal. I have been good with the food journal and that is helping, as I don't always want to write down all the junk I eat so I've cut back.

I also changed my goal from the 110 pounds I want to lose total to the 30 pounds I want to start with. I think that it won't be as frustrating if I do a lot of smaller chuncks of weight.

Thanks for the welcome.

Kelly


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CAPISTRANO's Photo CAPISTRANO Posts: 3,405
2/5/10 9:38 A

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Hello Kelly
And welcome to our group! Sorry it has taken me time to respond, been away with DH and barely had computer time.
I was on prednisone when I was first diagnosed 22 years ago and was on it for a few years. It does cause weight gain, increases your appetite and causes bloating so I cut down on sodium but that did not seem to help. It is a fight, like you said against the meds. I gained 50 pounds during those few years. My doctor finally put me on plaquenil and gradually weaned me off the prednisone. In fact he told me not to even try to lose while on prednisone because 'you'll just drive yourself crazy!' But I still tried as hard as I could and I think if I didn't do that, I would have gained a lot more.

I am still on plaquenil and have been doing quite well with it all these years. I need to have my eyes checked 2x a year because this med can accumulate in the eye but I have had no problems with that at all.
You could ask your doc about different meds that may be right for you because prednisone is just evil! emoticon

I have lost a lot of weight but then went through menopause, a few surgeries, have a slight thyroid problem...so I've gained some back despite my best efforts. It's an ongoing battle.

Please message me or come here when you need support!
Take care, Cathy


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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CLASSICKELLY21's Photo CLASSICKELLY21 Posts: 153
1/18/10 10:09 P

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Hello,

My name is Kelly and I have lupus since 1999. I am new to SparkPeople and was hoping to find others with the disease. It has been very hard on my body and I've been on Presnisone since 1999. I am still trying to find my maintence dose. I would also like to lose weight but it is so hard fighting against the meds. Do you have any thoughts on how to do this? Are you having success here??

Thanks,
Kelly


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102654's Photo 102654 Posts: 9,787
10/28/09 2:46 P

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Hi all again. I think I need to rev things up, but how do you do that when you don't feel to rev'd up?
It is a by-product of this disease. But we as a group have to lift one another up, to keep on going.
I have had many troubles with all my junk but need to get moving in the forward motion position.
Thank you all for helping me with that. Blessings to all. Diana

Baby steps, one at a time, and you will achieve your goals. Never, Never give up.


 
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BWCAGRL's Photo BWCAGRL Posts: 3,415
10/28/09 8:23 A

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Hi Helaine!
Good to see you over here too!
Welcome...see you on the boards!

Melissa
Lupus-Team Butterfly co-leader


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MZHELAINEOUS's Photo MZHELAINEOUS Posts: 1,175
10/28/09 1:23 A

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You are absolutely correct - I surely wouldn't wish this on anyone else! I know my family tries not to show that they're worried about me, but I can see it in their eyes and although I know I can handle this, it hurts me to see what they go through because of me. I have lost my balance, to what I don't know, I just seem to fall over these days so now they automatically hold out an arm when I pass so I can grab it if I need to. Anyway, thanks for the warm welcome! I look forward to being here :)

Come Fly With Us @ Lupus-Team Butterfly!
www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=12811

Weight:
460 - 3/3/06
265.0 - 1/5/12
165.0 - 12/31/12{GOAL)
~~~~~~~~~~~~~~~~~~
"Everything I need to know is revealed to me. Everything I need comes to me. All is well in my life." -- Louise Hay


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102654's Photo 102654 Posts: 9,787
10/28/09 1:06 A

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Hi, Helaine I just was able to read the post, I also belong to your team as well, I belong to three. It is helpful. I know. as far as the added autoimmune stuff I have had the same troubles. It is difficult but don't you think we appreciate the good times more because of it? I do. I know that hardly anyone understands what we go through, but that is ok I guess I don't wish this on them either. Take care. Blessings, Diana

Baby steps, one at a time, and you will achieve your goals. Never, Never give up.


 
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MZHELAINEOUS's Photo MZHELAINEOUS Posts: 1,175
10/25/09 8:26 P

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Hello All!
I have been on Spark since 2006 and I am the leader of Team Butterfly. I was away for awhile due to health problems, but I've returned with a vengance! I have had lupus since around 1998 - that's when I was diagnosed, anyway and I've picked up a few other autoimmune problems along the way. Doctor put me on disability about 6 years ago. I was on a lot of prednisone and ballooned up to 450+ but I've lost about 126 now even though it was 150 at one time. I hope to make lots of new friends here and look forward to meeting all of you!

Come Fly With Us @ Lupus-Team Butterfly!
www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=12811

Weight:
460 - 3/3/06
265.0 - 1/5/12
165.0 - 12/31/12{GOAL)
~~~~~~~~~~~~~~~~~~
"Everything I need to know is revealed to me. Everything I need comes to me. All is well in my life." -- Louise Hay


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102654's Photo 102654 Posts: 9,787
8/11/09 2:50 P

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Hello and welcome to all the newbies!!!!! It is so nice to have all of you join us here.
It is also nice to have a place to go to talk about the dealings we all have with lupus and of course other conditions, I also have other things to deal with besides lupus but that is the main theme here.
So jump right in and join the discusions new input is always appreciated. Blessings, Diana

Baby steps, one at a time, and you will achieve your goals. Never, Never give up.


 
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CHIPOMP's Photo CHIPOMP Posts: 613
8/9/09 12:12 A

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Hi,
I am new to this team, just joined a few minutes ago. I was diagnosed with Lupus in 1991. Have had many ups and downs since then. I also have Fibro, Lupus Nephritis, Diabetes, High Blood Pressure, arthritis, and have recently developed a heart murmur.
Back in 1993-94 I took Chemo for 18 months because of my kidneys. It stopped the progression of the disease, but I still have to see the nephrologist every 3 months.
It seems there is always something new every day--a new rash, a new pain something. Oh what I wouldn't do for a good night sleep.
I really shouldn't complain though, there are a lot worse than me. I live by myself, and have no problems taking care of myself. So, that is a good thing.
Am looking forward to this teams tips and insights.

--Francine--


My goal right now is to eat healthy and get exercise every day.



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BWCAGRL's Photo BWCAGRL Posts: 3,415
6/13/09 10:55 P

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Thanks for the warm welcome everyone! I look forward to getting to know many of you, and being able to add my encouragement and support!

Melissa
Lupus-Team Butterfly co-leader


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SANCTUARIA's Photo SANCTUARIA Posts: 183
6/13/09 2:28 P

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Welcome BWCAGRL! Everybody on this team is understanding and compassionate and fabulous. I haven't been here long but have gotten a lot out of SP and especially the Sparks with Lupus team. Congrats on finding your way here!


102654's Photo 102654 Posts: 9,787
6/11/09 10:49 P

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Welcome to the team, so glad you joined us, as Cathy has said we understand better than most. So we are a good place to rest at. Blessings, Diana

Baby steps, one at a time, and you will achieve your goals. Never, Never give up.


 
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CAPISTRANO's Photo CAPISTRANO Posts: 3,405
6/10/09 11:40 P

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Hello and welcome! It's great to have you on board with us. We all know how much more difficult it can be to lose weight, get healthy and deal with issues from our Lupus.
Cathy emoticon


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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BWCAGRL's Photo BWCAGRL Posts: 3,415
6/10/09 9:39 P

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Hi all,
I'm not new to SP or Lupus, but just joined this team. I live in Maryland with hubby and two great kids ages 5 and 3. My mother also has Lupus so I've learned a lot from her, and we now have an even closer bond. I'm going through one of the most stressful times in my life so I've re-committed myself to working out, losing the last 20 lbs, and staying as healthy as possible for as long as I can.
I'll share more later, but it's good to be part of another team!

Melissa
Lupus-Team Butterfly co-leader


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MOMMA48's Photo MOMMA48 Posts: 533,236
4/10/09 6:49 P

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Thanks for the reply, Diana, now I don't alone feeling like does this only happen to me!

Teams:
STRESSED OUT WOMEN GETTIN' HEALTHY
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WomenGettin'Healthy

Make Life Happen
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Do It for Love
teams.sparkpeople.com/DL
Autoimmune Conditions
teams.sparkpeople.com/AI
Motivation & So Much More
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Visit My Page for More Great Teams Who Are All Waiting to Meet YOU!


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102654's Photo 102654 Posts: 9,787
4/10/09 12:47 A

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It is good to see you here. I like you have had fluctuating ANA levels, and have had IBS, I also have gastroparesis, and that goes along with my diabetes, they have started doing testing on MS as well. I haven't gotten to the big point of things, with that though, I have vascular issues, and will be seeing a specialist for that on Monday. But I am still here and still kickin and that is a good thing.
HOpe that we can all keep our sanity here helping one another out. Take care all. Blessings, Diana

Baby steps, one at a time, and you will achieve your goals. Never, Never give up.


 
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MOMMA48's Photo MOMMA48 Posts: 533,236
4/9/09 4:43 P

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Hi everyone -- I'm a newbie -- but not to these Lupus symptoms. The dr. hasn't exactly diagnosed it -- and I haven't gone back for further testing -- as I'm a Mom and, taking care of me, has always been last on the list. They say my ANA levels weren't high enough those few years back but I'm honestly afraid to hear the diagnosis. I have the nose ulcers, leg rashes, some days I can eat one thing -- another day I can't, my lymph glands are swollen at all times, the joints hurt (and not just due to old age), I went from 135 pounds down to 105 in a matter of months -- which is why I was recommended to see the specialist. But that was a few years ago, and I'm back at a higher weight again -- the body just does what it wants and when it wants. No control for me! But, I stay positive -- the aches and pains -- that's okay, I can deal. The rashes and other irritations -- I can deal. I just refuse to let these challenges get in my way -- I'm way too determined to enjoy life! I also have IBS which is another autoimmune condition, so I just keep racking them up through the years -- but that blood work will need to be checked super soon -- I just don't want to have to survive on steroids or any other pills for this condition. I'm already of medication for other medical issues -- and I don't want to add to my pill collection. I'm only 48!!! I have alot of great years ahead -- I just want to feel like me and hope that my friends and families could understand how I feel most days and have a bit more understanding. That's the story of Momma48 and her brief description of my life!

It's nice to meet you all and I hope to gain a few friendships and get the support that others just don't give or even understand why.
emoticon

Teams:
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WomenGettin'Healthy

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teams.sparkpeople.com/LL
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teams.sparkpeople.com/DL
Autoimmune Conditions
teams.sparkpeople.com/AI
Motivation & So Much More
teams.sparkpeople.com/MM
Visit My Page for More Great Teams Who Are All Waiting to Meet YOU!


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102654's Photo 102654 Posts: 9,787
3/4/09 11:23 P

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WElcome to all here, I know that I don't know many of you newbies but stick around and we will all be the bestest of buddies.
Blessings to all, Diana

Baby steps, one at a time, and you will achieve your goals. Never, Never give up.


 
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LUVSPARTIES's Photo LUVSPARTIES Posts: 436
3/4/09 3:19 P

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Hi, I'm Diane. I'm from Northwest Indiana. I was diagnosed with Lupus a few months ago. Other than the facial rash (and this weird one that just popped up on my hands), the joint aches and fatigue I really do feel pretty good. Hoping it stays that way. The diagnosis is what led me to decide I need to live a healthier lifestyle, so in a way it was a good thing. Glad I found this team!

Diane
BSG - Diving Dragonflies


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CAPISTRANO's Photo CAPISTRANO Posts: 3,405
3/4/09 2:09 P

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emoticon
Welcome, welcome all!

So glad you are here! emoticon


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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MELISSADAVLIN's Photo MELISSADAVLIN Posts: 150
3/3/09 11:57 P

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Hi, I'm Melissa. I live in Idaho. I'm 23 and I was diagnosed with lupus when I was 19. So glad to be here!

MRSANGELL's Photo MRSANGELL SparkPoints: (0)
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2/14/09 4:36 A

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Hi I'm from Brisbane Australia and I was diagnosed with Lupus 6 years ago.

The mediocre teacher tells. The good teacher explains. The superior teacher demonstrates. The great teacher inspires.
-William Arthur Ward


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BABYBIRD_77's Photo BABYBIRD_77 SparkPoints: (15,067)
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2/12/09 9:18 A

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Hi, I'm Katie, I'm from up-up-up state NY, closer to Canada than the city. I was diagnosed about 8 and a half years ago with Lupus, Lupus Nephritis, and just about every other symptom you can have except the brain involvement. I have been in remission from the Nephritis for about 5 years which is AWESOME! But I still get the fatigue, aches and pains, skin rashes, and bronchial inflamation a couple times a year. Since my diagnosis, I have developed allergies to dust and mold.
My joints always feel better when I am working out, but when the fatigue is so bad, I can't workout, I get very angry and depressed because then my body hurts more. I also notice an improvement with how I feel physically with how I eat.
I know I am sporadic sometimes with my posts, but I love this team, so thanks!!




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NANNY541 Posts: 824
2/12/09 8:54 A

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Good Morning My name is Cheryl and this is a great team. Thanks Cathy for coming on for us. I have Lupus,Fibromyalgia,Degenerative disc disease, spinal stenosis,thyroid and High blood presure problems and a couple of things i probably missed! I'm just now dealing with the spinal stenosis. I found out about a week ago. I use to work but now i had to get on disability. I have 7 grandchildren and 2 kids. Boy and a Girl. I have had a good life then one day it all started to fall apart and it hasn't stopped. But i Praise the Lord i'm not as bad as what alot of you have to deal with. I'm really sorry to hear about all the pain there is. God Bless you all.
Cheryl

If you look at what you don't have in life then you have nothing. If you look at what you have you have everything.


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102654's Photo 102654 Posts: 9,787
2/12/09 1:29 A

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Thanks Cathy, when I started this team a couple of years ago, I did have an introductory thread but for some reason it is not there anymore, most likely my techy abilities, but thanks for starting this up again great idea.
Hello all, I am from Michigan, always, so that is a long time. Diagnosed with sle about 24 years ago, also have diabetes,gastroparesis, fibromyalgia, parkinsons, spinal stenosis, and herniated discs, and degenerative bone disease. But with a little luck, I will get my body back into as good of shape as it was before my shoulder surgery last year. I have done quite well I have worked out everyday this week.
Blessings to all, Diana

Baby steps, one at a time, and you will achieve your goals. Never, Never give up.


 
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TIGER1957's Photo TIGER1957 Posts: 573
2/11/09 10:28 P

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Ottawa, Ontario, Canada.

SLE and a whole slew of other things. Oh what fun!

Actually, can't complain. I have a pretty good life, with a few hills and valleys along the way just to keep things "interesting".

Tiggers bounce BIG!
100 pounds lost. 5'4".
WW goal again (04/07/10)
WW goal of 135.0 (19/04/07)
Blue Belt in Tankyushin Aikido (27/03/10)
Ottawa, Ontario, Canada


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CAPISTRANO's Photo CAPISTRANO Posts: 3,405
2/11/09 9:14 P

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WOW Meb0810! You're quick!

I'm from Berwick, Maine - originally from Mass.
I was diagnosed with Lupus 22 years ago. Since then I have been diagnosed with Sjogrens, Antiphospholipid, Bursitis and Osteoarthritis plus a few other minor 'life' disruptions!

I've been on Spark since Sept. 06!! emoticon


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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_FITMAMA's Photo _FITMAMA Posts: 3,395
2/11/09 8:59 P

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Hi! I am from Buffalo, NY.
I have Lupus and Antiphospholipid Sydnrome and a couple more autoimmune disorders.
I have been on SP since May 2008 and LOVE it!

TOTAL BODY FITNESS & NUTRITION -
www.tbfn.info

Here's a link to my TBFN Fan Page on Facebook: www.facebook.com/totalbodyfitnessand
nutrition

We'd love for you to join us!

TEAM LEADER OF:
CARB CYCLING - www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=31145


TEAM LEADER OF:
MUSCLE AND FITNESS HERS -
www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=40893


"When the world says Give Up


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CAPISTRANO's Photo CAPISTRANO Posts: 3,405
2/11/09 8:47 P

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HELLO emoticon

I thought this would be a good place to introduce yourself. And tell us where you are from!

Welcome to the team! emoticon


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


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