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Thread: Hello lupus community

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    Smile Hello lupus community

    I am new to this forum. Don't know where to begin. I was newly diagnosed with Blepharitis. Not happy about it at all. My eyes are driving me crazy. Like we don't have enough to deal with lupus. I was diagnosed with Lupus six years ago. Didn't have any issues the first couple of years. Then I had a major loss my husband passed away at 57. Everything from that point went out of control. My lymph nodes decided to het involved. Now I just try to live everyday to it's fullest. By trade I am an RN. New to the field by four years it is my second career. Glad to be here.

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    Hello mybella,

    Welcome to our lovely large family of WHL and it's so lovely to have you with us.

    Sorry about the loss of your husband but we're a community here who share our problems besides helping best way possible, venture through the threads and you'll learn so much linked to Lupus and if your ever down vent away as there's always someone on 24/7 being worldwide that's the beauty of WHL.

    It will be nice getting to know you Terry xxx

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    Welcome to WHL! Be prepared to have a great time because this is a gathering of the greatest people anywhere!
    "I'm going to get healthy or die trying"

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    Welcome! I'm glad you found us, but I'm sorry that you need to be here. You have had to handle so much in such a short period of time. I am in awe of you earning your RN after your diagnosis. I haven't used mine in 20 years and no one is interested in hiring me now. Do you work in a hospital? If so, then I am really blown away. I'd die if I had to do a 12 hr shift. Is lupus what is affecting your lymph nodes? If so, that's something I haven't heard of before.

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    hi, and welcome

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    I just wanted to stop in and welcome you to WHL. I am sorry that you needed a place like this but, since you do, I am glad that you found us. I am also sorry about the loss of your husband. I am sure that the stress of that helped cause the flare that let to the problems with your eye lash follicles. Please make yourself at home. Look through the old threads or make new ones if you wish.

    I look forward to getting to know you and welcome to the WHL family

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    Gizmo, Yes I work in a hospital. It is the hardest thing I ever did in my life. Returning to school with all that was on my plate was a huge accomplishment. The whole story is, my youngest son has Aspergers so I did what any loving mother would do, which is to take on the school system for his benefit. He was my career so to speak. I won my case with the school system in court but knew the problem was bigger than just my son. So I went on to put on National Conference's to educate doctor's ,educator's and parents who had children with this affliction. I sat on the board of NLDA.org and held conferences once a year in California. I live in Mass. but started networking with parents and professionals across the country. Meanwhile my husband and I were restaurant owners so I was fortunate that I could leave the business to do what I deemed important for many children. Then the business environment in our area became stressed and we closed our doors after 21yrs in business. Relocated to Florida for 2 yrs and moved back home to Mass. That is when my husband said you need to go back to school to become a nurse because I always wanted to be a nurse but other things in my life took there priorities. So I began pre-req's at the age of 48 and finished at 52. It must have been meant to be because my 1st year in Nursing 1st semester I lost my dad who was my last parent. I was devastated and didn't think I would make it through but my husband was my biggest fan who supported me all the way. Then the next year when he was diagnosed with Mets to the brain with no warning or illness prior to this diagnosis my world felt like it came to an end. Wanted to quit but my husband wouldn't let me give up on myself. Angels carried me through this time period I certainly don't take any credit for it. He only lived 6 months from time of diagnosis. I was his nurse until he passed on Sept. 8th, 2007. Then I began a new career in Nursing. Yes Lupus is affecting my lymph nodes in my axilla. Had surgery to have them biopsied to find out that they are reactive to the inflammatory process. It is common but mine were very large. They wax and wain with the disease process. I went to an Oncologist who did a complete blood work up with CT scans and everything is OK it is just part of having lupus. The skin issues drive me crazy with rashes and blisters sores in the mouth and the fatigue. WOW I sure do talk a lot but wanted to share with someone who knows and understands the battle we wage everyday. Thanks for listening to my story. Hope you have a great day.

  8. The Following 3 Users Say Thank You to mybella For This Useful Post:

    Gizmo (07-13-2011), steve.b (07-11-2011), tgal (07-12-2011)

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    Default The rest of my story!!!!!

    From the start, at seventeen just when you think you have the world at your feet I was diagnosed with Epilepsy. I have Tonic-Clonic (Grand Mal) seizures. Idiopathic in nature which meant there was no known cause. Was allergic to many medications to treat so I was having seizures on a daily basis for a long time. At 21yrs of age I was fired from a job because of the seizure disorder. I was dropped by Blue Cross & Blue Shield and couldn't get any insurance nor gainful employment. I had to file for disability and I started my life on SSDI and had to wait 2 yrs before I could go on Medicare with no benefits for pharmacy so I paid out of pocket for medication until my mid-thirties. During that time I was plagued with Kidney infections and in and out of the hospital. At 21 yrs old. I also had my first born. During that time I was home feeling worthless because I couldn't work. Then at 29 I had another child which the pregnancy went well until I began labor at 9mos. Then the unthinkable happened my placenta abrupted cut off life support to my child and was hemorrhaging internally and no one knew it at the hospital. My baby died during that labor and I delivered a still born. What was worse is that delivered naturally and by the time I was ready to deliver I had no clotting factors left in my blood and it was too late to give me any so I came close to dying during that birth. I had to be transfused and was exposed to Hep C because blood supplies weren't being filtered at that point. I felt like I didn't want to go on and became very depressed. I worked through the depression and started trying to have another child. Four yrs of trying to have a pregnancy to find out my tubes had clubbed from an infection. So cutting edge surgery at the time gave me a chance to have another child. They had to rebuild the fingers at the end of each fallopian tube which catches the egg which then implants in the Uterus. I had one year to conceive and six months later became pregnant at 32yrs old. I was a high risk pregnancy. I carried and delivered my son who I thought was a gift from God well he was but in a different way. While raising him I noticed that he reacted to sensory stimulation in a hostile way. Couldn't wear certain materials against his body and reacted to loud noises as though someone was hurting him. I knew that was not a normal response. Kept after the pediatrician to look into it and was told he is just being a boy. His melt downs were becoming an issue everyday. So I started to inquire with other parents about this behavior I was witnessing to find out it was not normal. I fired his Pediatrician and went to someone who tested him to find out that he had Asperger's syndrome. Well during my thirties while raising him the laws changed on insurance and I came off of SSDI to be gainfully employed again. I was able to rise above the craziness and move forward. Still at this point didn't know I had lupus/alpha 1 anti-trypsin. I feel for everyone that has posted here because I truly understand the struggles that all of us face. Now you know my story. Thanks for listening and hope I can do the same for someone else.

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    Quote Originally Posted by mybella View Post
    Gizmo, Yes I work in a hospital. It is the hardest thing I ever did in my life. Returning to school with all that was on my plate was a huge accomplishment. The whole story is, my youngest son has Aspergers so I did what any loving mother would do, which is to take on the school system for his benefit. He was my career so to speak. I won my case with the school system in court but knew the problem was bigger than just my son. So I went on to put on National Conference's to educate doctor's ,educator's and parents who had children with this affliction. I sat on the board of NLDA.org and held conferences once a year in California. I live in Mass. but started networking with parents and professionals across the country. Meanwhile my husband and I were restaurant owners so I was fortunate that I could leave the business to do what I deemed important for many children. Then the business environment in our area became stressed and we closed our doors after 21yrs in business. Relocated to Florida for 2 yrs and moved back home to Mass. That is when my husband said you need to go back to school to become a nurse because I always wanted to be a nurse but other things in my life took there priorities. So I began pre-req's at the age of 48 and finished at 52. It must have been meant to be because my 1st year in Nursing 1st semester I lost my dad who was my last parent. I was devastated and didn't think I would make it through but my husband was my biggest fan who supported me all the way. Then the next year when he was diagnosed with Mets to the brain with no warning or illness prior to this diagnosis my world felt like it came to an end. Wanted to quit but my husband wouldn't let me give up on myself. Angels carried me through this time period I certainly don't take any credit for it. He only lived 6 months from time of diagnosis. I was his nurse until he passed on Sept. 8th, 2007. Then I began a new career in Nursing. Yes Lupus is affecting my lymph nodes in my axilla. Had surgery to have them biopsied to find out that they are reactive to the inflammatory process. It is common but mine were very large. They wax and wain with the disease process. I went to an Oncologist who did a complete blood work up with CT scans and everything is OK it is just part of having lupus. The skin issues drive me crazy with rashes and blisters sores in the mouth and the fatigue. WOW I sure do talk a lot but wanted to share with someone who knows and understands the battle we wage everyday. Thanks for listening to my story. Hope you have a great day.
    Talk all you want! That is what we are here for! I am going to leave a quick welcome because I am on my way to the cancer hospital to spend the day with the parents of a 17 year old young man who is having a bone marrow transplant. As bad as I feel they are always a reminder of how much worse it could be.

    Here is wishing everyone a pain free day and a reminder to hug your kids as often as you can

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    Mybella,
    Welcome to WHL. You have been through a lot, and I have great respect for you.
    My mother-in-law got her GED the year that my husband graduated from high school. She started work on her RN the year that she was 43 and became a double-whammy Grammy when both my brother-in-law's wife and I had our babies on the same day. She was eventually the head nurse of a coronary critical care unit and taught nursing before she retired. It was the stress of her death that caused my AI problems to show up, so I know how that sort of stress can affect you.
    You mentioned that you have blepharitis and lymph glad problems. Do you also have dry eyes/mouth? These can all point to Sjogren's. Has your rheumy checked for SSAs and SSBs? There are several of us who have a mixture of AI diseases. It adds to our allure!
    P.S. One of my favorite students was a boy with Asperger's. He was 11 when he came to the high school to take advanced math and science courses - he was brilliant! He also came to my Latin class. The next year, the district tried to force him to stay at the middle school and to be in some program that his mom objected to, so she home-schooled him. I went to his house and tutored him through two more years of Latin. The last I heard from them, he is 16 and is doing very well at a small college. I'm proud of that boy!
    I hope to see you here more often!
    Hugs,
    Marla

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