Our Stories

Kristal - posted on 03/13/2009 ( 4 moms have responded )

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I am sorry that I have not gotten this ball rolling in the right direction sooner. We all know how life with both Lupus and Fribo can be. I think it would be a great ice breaker to let everyone know a little about yourself. I will post first so get the ball rolling.

I am turning 31 this September. By the age of 21 I was told that I had fibro, which was not a big suprise because my grandmother, my mother and my aunt all have it as well. They where able to go back in my medical records and saw that around the age of 16 I started to show the signs and systems. When I was 24, I watched my mother almost die from lupus attacking her heart, liver and kiddneys. About a year later I feel ill to lupus and it attacked my nervious system. Now I have minor problems with controlling my body when I get tired or sick. The kicker of the whole thing with lupus is that both my mother and I give a falus negitive on the ana test that they use for lupus and if it wasn't for a trip to Stanford we would not know that is going on with either one of us. Over the past few years I have been fighting to get back to being normal and back to work. I will say this about having lupus and fibro, every day is always different and a new adventure.

Now that I have told a little about myself please feel free to tell the group about you. I would love to know a little about everyone and what they have gone through.

Thanks,

Kristal

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4 Comments

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Emily - posted on 09/09/2011

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Hi. I'm Emily. I'm a mom to Jolie (7) and Emery (4 going on 5 really soon). I was diagnosed with Connective Tissue Disease in 2009 on my daughters birthday. I also have Fibromyalgia, Sjogrens, Type II Diabetes and Intestrial Cystosis. I hate that I can't be the mom that I want to for my children... but I do the best that I can. I love their strength and understanding of my condition at this age. They actually are one of the greatest forces that keep me going.

Rebecca - posted on 12/24/2009

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Hello. I see this post/group is having a hard time getting going. Which absolutly floors me because there are so many moms out there with these diseases. Anyway...

My name is Rebecca Woodruff and I have Fibro and Lupus. I was diagnosed with Lupus in April of 2008 when I had gone to my Ob/Gyn so my husband and I could start having fertility tests done because we had been trying to have a baby for 4 years and succeded in getting prego once but unfortunatly ended in a miscarriage. My husband is a diabetic so we thought maybe he was the reason. So they did sperm count checks and blood work on us both and we found out that he was fine but my ANA was 503 so they diagnosed me with Lupus and started me on Plaquinel which has been very successful. My joints were killing me so they thought that I had R.A. and started giving me steriods.I also go through spells where I feel like my skin is one HUGE bruise I cant stand to be touched. One hug will drop me to my knees and cry. I got prego in July of 08 and was having a ton of pain so they kept pushing the steriods and nothing got better. Finally after my daughter was born they finally diagnosed me with Fibro. This has been a horrible road. My doctors are putting me through hell. I feel like a lab rat that is getting NO relief. They have tried all kinds of psych meds and now they are trying neuro meds.It seems like nothing will ever help. My lower back and legs are in contant pain. The only time I get any relief is when I have dental work and they give me pain killers. I am hoping some day we all get a cure.

Sorry about all the gripping you all know how it goes.

Rebecca

Heather - posted on 08/18/2009

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Hey,

My name is Heather also. :) It took 3 years of pure and utter HELL to finally get properly diagnosed. Untill then, no one believed that all the different symptoms were related to each other. They just kept comming up with new and exciting things to try. I finally found an AMAZING rheumetologist (Dr. John Hague, Rheumetology Associates, in Indianapolis, IN) who told me what was wrong and has held my hand through out all of it for the past 2 years. Prior to getting sick, I was a speech therapy assistant, coach of my son's travel soccer team, "team mom" for my daughter's marching band and all of the fun stuff in between.

I feel like my life stopped. I HATE it. I am now trying to take my life back. I would like to try to get a job and go back to school.

Heather - posted on 05/24/2009

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I am Heather I am 28. I had 3 kids, Then I had my 4th baby in Aug. 2007. I always felt great but by Sept. 10th 2007 I went to the doc with a LOT of pain in my arms. Everyone thought I pulled a muscle. No ONE NO ONE believed me. Then after 9 months I had an MRI which showed herniated, bulging,and degenerative disks. They still said that I couldn't be in THAT much pain. I have had epidural steroid injections. None ever work. I started going to a pain clinic back in Feb. and they diagnosted me then with Fibro. I am still learning a lot. Its hard really hard its been hard since 07



Thanks

Heather

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