Author Topic: Lupus Walk (Read 1967 times)

MakinTheBestOfIt · « **on:** February 28, 2012, 10:05:07 AM »

Many of you know, but many of our newer members do not, that I have Lupus and have had it for about 12 years. It is an autoimmune disease where your immune system attacks healthy cells rather than the sick ones. It sucks and impacts every single day of my life. I still manage to live a very full life with my kids, business, graduated college and do just about everything else I want to do...but it is always there in the background.
Just because we, meaning Andrew the boys and I, needed yet another event to get involved with we have registered to do a 4K walk for Lupus awareness in May...if anyone is around Ocean City, NJ stop by and say hi!
I just got the page up, but you can see it here http://www.active.com/donate/2012SouthJersey/walkforlupusKKitche . I am not pushing for donations, though of course they are welcome, just wanted to keep you all posted on yet another of our little projects that seem to fill our calendar!

chainmaille · « **Reply #1 on:** March 09, 2012, 05:04:26 PM »

I'll be there with bells on!

MakinTheBestOfIt · « **Reply #2 on:** March 09, 2012, 05:29:02 PM »

Quote from: Chainmaille By MBOI on March 09, 2012, 05:04:26 PM

I'll be there with bells on!

Don't think anyone wants to see you wandering around wearing bells honey.

Blue Highways · « **Reply #3 on:** March 09, 2012, 05:31:46 PM »

Quote from: MakinTheBestOfIt on March 09, 2012, 05:29:02 PM

Quote from: Chainmaille By MBOI on March 09, 2012, 05:04:26 PM
I'll be there with bells on!

Don't think anyone wants to see you wandering around wearing bells honey.

HA!!!

thepeasantpailfull · « **Reply #4 on:** March 10, 2012, 10:33:14 AM »

So interesting,I have wondered about that. The commercials and posters I see are always so cryptic to me. I'm thankfully the worst I have to worry about is pretty controllable asthma and rare bouts of anemia....I don't get enough iron I guess.

Wish I could check it out but I'm way far away from jersey!

MakinTheBestOfIt · « **Reply #5 on:** March 10, 2012, 11:48:03 AM »

Quote from: thepeasantpailfull on March 10, 2012, 10:33:14 AM

So interesting,I have wondered about that. The commercials and posters I see are always so cryptic to me. I'm thankfully the worst I have to worry about is pretty controllable asthma and rare bouts of anemia....I don't get enough iron I guess.

Wish I could check it out but I'm way far away from jersey!

the commercials tend to by a bit cryptic because it is a tough illness to define in short terms. The symptoms vary widely from person to person so it doesn't fit into a nice box for a billboard. Suffice it to say that it impacts your every move, some days more than others.

thepeasantpailfull · « **Reply #6 on:** March 11, 2012, 11:30:19 AM »

I think I jinxed myself,I'm lying in bed today from one of those rare spells. At least until the dizziness passes. Sometimes it's for quite sometime but I can't imagine how that would be all the time.... and keep up with a family...pretty amazing.

Nancy Pace · « **Reply #7 on:** April 27, 2012, 04:37:44 PM »

I am sorry darlin' Kimberly about the Lupus, I didn't know until now. You are amazing! You must have a great family to support you.
I know of a lady much older who has Lupus mostly affects her joints and kidneys. I have read everyone is different.
I will keep you in my prayers,
Nancy

MakinTheBestOfIt · « **Reply #8 on:** April 27, 2012, 07:02:21 PM »

Quote from: Nancy Pace on April 27, 2012, 04:37:44 PM

I am sorry darlin' Kimberly about the Lupus, I didn't know until now. You are amazing! You must have a great family to support you.
I know of a lady much older who has Lupus mostly affects her joints and kidneys. I have read everyone is different.
I will keep you in my prayers,
Nancy

Thank you so much. I forget that a lot of our older members knew about it but it isn't a topic that comes up in daily conversation $:-\$ . Thanks for the love.

Uniqlets · « **Reply #9 on:** April 27, 2012, 11:11:59 PM »

Kimberly,
I wish I were in a position to sponsor the walk now, but times are rough. A number of years ago, I did a story on auto-immune diseases. It is troubling how many there are, how many people's lives they impact and how little is known about their causes. To add to the difficulty of living with the symptoms, it often take a long time to get an accurate diagnosis. My mother had Polymyositis and was lucky that after a year of high does prednisone, it went into remission. My sister has "non-specific auto-immune disease" meaning they can't figure out exactly what it is. I applaud anything you do to draw attention to Lupus. I am sure you must be familiar with it, but AARDA can be a good source of information.

MakinTheBestOfIt · « **Reply #10 on:** April 28, 2012, 06:48:29 AM »

Thanks Lisa! It took me about 4 years to get a firm diagnosis and I am still constantly explaining myself to many people who have never heard of it or of many of the "invisible" illnesses. They make life difficult for the families as well as the person with the illness because it impacts every aspect of your life. My boys have never known any different and Andrew and I have learned to plan and prepare for the what ifs and just in case when we plan vacations and such.

I know that many are not in a position to donate and a big thank you to those that have! I am just happy to have some love shown for myself and those that deal with this illness and hopefully more of these walks will pop up and the awareness will be increased...and maybe someday a cure! In the mean time I will just roll along and adjust where I have to.

On a funny note about this disease...one of the symptoms involves dead nerves. In my case I can't feel my fingertips or some of my toes. No big deal once you get used to it, other than the chance of injury that you don't feel but can get infected and such...the upside is I can wear the silliest, pointiest, most obnoxious shoes on the planet without the pain in my toes because I can't feel them anyways!

Nancy Pace · « **Reply #11 on:** April 28, 2012, 09:06:18 AM »

You are a real card Kimberly, BTW the fact that your Lupus doesn't come up in conversation daily really speak to your strength of character, you are not a whiner your a survivor. That is the very thing about you that makes you a person to admire, God Bless you!

MakinTheBestOfIt · « **Reply #12 on:** April 28, 2012, 09:42:22 AM »

Quote from: Nancy Pace on April 28, 2012, 09:06:18 AM

You are a real card Kimberly, BTW the fact that your Lupus doesn't come up in conversation daily really speak to your strength of character, you are not a whiner your a survivor. That is the very thing about you that makes you a person to admire, God Bless you!

Thank you and I have been blessed in more ways than I can count!

MakinTheBestOfIt · « **Reply #13 on:** May 17, 2012, 02:31:43 PM »

Well, the time has come for the walk! Andrew and the boys will be there with me wearing purple so we will be a bit out of touch on Sunday morning. In the mean time, thanks for all the messages and well wishes!