Posted 9/1/2007 8:29 PM (GMT -6)

Alwaysrosie, I live 40 minutes from Cleveland. If you decide to walk let me know. I would love to meet you. I think what is so hard for me is that I have not had the guts to go to a support group yet and meet others with Lupus. I really need to. To meet other people with lupus in person will be very emotional for me. My husband and I are going to walk together. I hope your son does great with his marathon. My husband and I wish him lots of luck. It's wonderful he's running. You are very blessed to have a supportive son.

Bill have a great time in you walk. That is great on how much you have been able to raise.

Gagirl, thankyou for the reminder about the camera. And all of your advice is great. I'm so glad that your seeing good results from Fosamax and you can exercise again. YEA!!! I was nervous about the walk and didn't think about just enjoying the day. I used to be thin and such a work out type of person. I guess my old attitude is still here. It's like ok 3 miles how fast can I get it done. I don't have to do that. I can just walk at my own pace and enjoy the day.

hippimom, I know exactly what you mean about running marathons. I used to be so active and I loved to walk miles and miles. Now I get tired going from the car to the house. I have been taking short walks getting ready for the walk. I really want to participate. Sorry to hear that your son has arthritis. Mine has mild CP and autism. And we are trying to decide if he will walk or pull him in a wagon. His legs get tired. Now I feel really enthusiastic too. I think this walk will be really good for me and my family. It feels so emotional.

THANK YOU EVERYONE FOR THE SUPPORT!

kitty


Polycystic Ovarian Syndrome 1992, Restless leg syndrome 1998, SVT tachycardia/Arrythmia '06 (gone after ablation 07), SLE '07, Raynauds '07....Plaquenil,  NorQD, Naproxen, Folic Acid (for mouth/nose sores), Multivitamin, magic mouthwash, Prednisone.

Posted 9/1/2007 9:18 PM (GMT -6)
Kitty,
I did not realize that you have a new SLE diagnosis. Wow. Hopefully the plaquenil and prednisone will work for you right away. I used to think I had to do everything at home and also with family/friends and if I could not. I felt guilty. It is hard to explain to anyone the severity of fatigue that we face, in my case every day. Especially if you don't "look sick." I just had to learn over and over again that I paid for it when I would do to much. I am still learning and I am coming up on 9 years. I have learned tons of coping skills and am here if you need me a solution for something.

Support groups, this forum, and participating in the LFA event like the walk will help you in a way that is hard to descibe. You will meet people with all stages of lupus and it brings out all types of feelings. Just remember every case is different, from mild to severe. Just take good care of yourself and if you have a good doctor that you trust, follow their instructions. Try to stay moving when you are able, it really does help on so many levels.

Gagirl1
Posted 9/2/2007 11:54 AM (GMT -6)

Gagirl, I am at the end of my first year with Lupus. It's been very hard. The plaquenil helps. And finally I was able to try prednisone and it worked wonderfully. I am not on a maintance dose yet. My doctor puts me on the pred packs and so far they work but only for a very short time. I dont have organ involvement at this time. Although they are not sure if the Lupus caused my severe tachycardia and arrythmias. Some doctors say yes and some say no. I had a heart ablation and now the tach and arrythmia is gone. I just never know what each morning will bring. One day I'm semi ok and the next morning wake up and my world is inside out. Which I am sure happens to you too. I can't wait for the walk. I think my husband and I need it. And we are going to go to a support group too. I'm ready. This lupus thing has been an emotional roller coaster. Thank you for your advice.

kitty


Polycystic Ovarian Syndrome 1992, Restless leg syndrome 1998, SVT tachycardia/Arrythmia '06 (gone after ablation 07), SLE '07, Raynauds '07....Plaquenil,  NorQD, Naproxen, Folic Acid (for mouth/nose sores), Multivitamin, magic mouthwash, Prednisone.

Posted 9/2/2007 8:51 AM (GMT -6)
After reading this topic yesterday, I got so excited about it that I e-mailed a bunch of my extended family to see if they would want to come and do the walk and maybe form a team. I don't know if anyone will, but it's fun to think about. Either way, it will be fun even just to do it with my immediate family. My hubby said he can probably do some fund raising at work. In my e-mail to my extended family I asked for even a small donation if they couldn't walk.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


Posted 9/2/2007 9:52 AM (GMT -6)
Hi Kitty,
If you are doing fundraising for your walk check out Firstgiving.com. You can create a page with your story, invitation and picture! Set a goal for whatever amount you want to raise, it does not have to be much at all. It will send the email and create an address book for you. It is fun and it keeps lupus, you, and the need for a cure in front of people. I did one for the Atlanta walk. I was touched by those that gave. I looked at the Iowa Lupus Foundation page and it looks like a great day for a walk. I am so glad that you are excited about the walk and have something to look forward to soon!
 
This morning on CBS morning news they featured the Iowa State Fair. Have you ever been?
Gagirl
 
 
Posted 9/2/2007 9:59 AM (GMT -6)
Kitty,
My resting heart rate was from 100-145 for years. I had inflammation in/around the heart. It comes with Lupus, and can also come from a low grade fever in other patients. My heart rate is much better on medication that I take twice a day. I was a nervous wreck when it used to raise, it made me feel so bad, out of breath, and just nervous. The strange thing was movement, rest, or excercise did not change it. Do you have "The Lupus Book" by Daniel Wallace? It is approved by the LFA and it is handy to have when something odd pops up and you need to know if it is from Lupus. I would not read it all the way through (that's just me) or you will go nuts :-)
Gagirl1
Posted 9/3/2007 5:47 PM (GMT -6)
Hi Kitty . . . I'll check into it. I have sent many people information about my son running the marathon for lupus and NO ONE has responded. He has had three donations . . . one is mine, one is my husband's and one from one of his friends. I'm hoping that as it gets closer to the run some will give . . . . my point is that I would not ask all of those same people to contribute for my walk, so basically I would just be walking to be part of the event.

I'll be sure to let you know if I decide to try doing the walk. Thanks for the invite!!

Blessings!
In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
Clickable Links:   Healing Well:  Lupus Resources
Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org
Criterea for Diagnosing Lupus:  Lupus Criterea 
Find a Lupus Foundation Chapter near you: Lupus Chapter Locator

Posted 9/3/2007 6:09 PM (GMT -6)
Hey Guys,
I did the Lupus Walk in Atlanta and had a Firstgiving Page. First I was surprised at who responded and those that did not. My parents were the only family members that gave, with the exception of my 10 year old nephew. Funny how so many ask what they can do, and then when you ask there is no response. The smallest of a contribution provides so much encouragement! - I sent the Firstgiving email page out every few weeks. I learned from other walkers that people have a bend on giving closer to the walk. Hope this info. helps. It will be a great day for you all no matter what!
Gagirl1 :-)

Post Edited (Gagirl1) : 9/3/2007 5:28:20 PM (GMT-6)

Posted 9/3/2007 6:36 PM (GMT -6)
Thanks Gagirl . . . I'll keep that in mind. I have SUCH a hard time sending out requests like this . . . we'll see how it goes.

Blessings!
In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
Clickable Links:   Healing Well:  Lupus Resources
Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org
Criterea for Diagnosing Lupus:  Lupus Criterea 
Find a Lupus Foundation Chapter near you: Lupus Chapter Locator

Posted 9/3/2007 7:13 PM (GMT -6)
You are welcome. I am not that great either, but being sent from a fundraising page helped. (Tax Deductible.. :-) If you decide, just remember you are not asking for yourself, but rather for the Lupus Foundation, etc. That helped me anyway. Again, I just hope you all have a great time no matter what you decide! Take Care.
Posted 9/4/2007 1:41 PM (GMT -6)

I am participating in a Lupus Walk this Sunday, Sept 9th sponsored by the Lupus Alliance of Upstate New York.  We have a wonderful team walking made up of my husband and I, my mom and stepdad, my in-laws, my DH's grandmother and grandfather, DH's two little cousins, my sister and brother in-law and some really great friends of ours.  Thus far, between online and offline donations we have raised almost 1600.00 and I have a feeling we will be able to make our goal of 2500.00 by the day of the walk.  We are all really looking forward to this event. After the walk DH and I are hosting a big party at our house for our team to show our appreciation.  It should be a great day!

Here is our page (my pug is the team mascot!)  www.firstgiving.com/ElmwoodVillage

We have had so much fun trying to get donations and being excited about the walk.  I really encourage everybody to give it a try if they can.  It doesnt matter how fast you walk or if you cant even walk the entire way.  I really believe it is all about the spirit of the event and the cause at hand!

Posted 9/4/2007 2:00 PM (GMT -6)
Great Spirit! I love the idea of having your team over to celebrate! Good for you.

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