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Thread: new to lupus & sjogrens but not to being "sick"

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    Unhappy new to lupus & sjogrens but not to being "sick"

    I am 23 years old. Proud mother & wife. I was diagnosed with Fibromyalgia the day before my 15th birthday (happy birthday! ha.) Since then I have been tossed around the medical community & not taken seriously. I have been hospitalized countless times for weird viruses and infections which finally led me to the lupus center of excellence where I FINALLY got some answers. What led me there was a vacation in May that resulted in a full out lupus sun rash... luckily my general doctor called me in a steriod pack down in key largo that helped it tone down and feel much better... while there I made the decision and did the research to go to the center (it's a 5 hour drive from where I live) After 16 viles of blood and 1.5 hour with Dr. Komporus (he is great!) I got the results that I had a weakly positive ANA (I have never had a positive ANA but yet all of the symptoms of lupus including periodic inflamation, high wbc, butterfly rash etc.) I was also informed I have Sjogrens syndrom and my auto-immune facotors were off the charts and when he looked at my finger tips at the blood vessles it showed signs of auto-immune issues (never had that done here at any of the terrible local Rhuemy's) I might have found a decent Rhuemy in my area I see him this Tuesday and I see my lupus doctor again in September. My symptoms are debilitating fatigue, joint pain, rashes, frequent infections etc. etc. I have been in and out of the hospital now for 8 months for either infections or pain so bad I wish i was in labor over what i was feeling! I am on 10mg predisone, 200mg plaqinil (still waiting for it to work) & now Savella for my Fibromyalgia. I also take muscle relaxers and pain medicine... they had me on the Fentanyl patch (I have a VERY high tolerance to pain medicine) but after a month i ripped it off and said no way am i going to be on this and had the lovely withdrawls for 4 days... that was almost 3 weeks ago... Since being diagnosed I have been extremly depressed & anxious... I guess that is normal for the situation I am in but it is very, very hard. Never in my life have I felt like this... I just feel like the older I get the worse it gets... I also wanted to have I have IC, POTS, SVT & very mild asthma (sometimes i wonder if i was misdiagnosed) anyway... that's about it... I hope to make some new friends and get some much needed support right now....

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    you've come to the right place, mckinney. You'll find all kinds of really caring, knowledgeable people who've been through situations similar to yours... It's great!

    One of the best things is that you can always come here to vent. First, just getting the thoughts out helps (me, anyway) feel better, and then having the support of people who know what it's like is priceless.

    Hope you have a good day, and welcome!

    brian

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    Thanks Brian for the welcome! I am glad I found this place... I really need some place to get my feelings out (I also have a counsling appointment Tuesday) But I am just worried for my husband he is beyond stressed and I have always been the "everything will be okay cheerleader" in my household and since I have gotten really sick the past 8 months I havent been that way so it's taken a toll on our house... our marriage is great but there is just this looming depressed feeling over our house which I am sick off... he has his own set of issues OCD, Chronic severe migranes etc. not to mention the thousands of dollers in medical bills over the past 8 months have needless to say really stresses us out... Sometimes he tells me he feels like a single dad when he has to come home from working all day and take care of the kids until bedtime... makes me feel so bad... I just wish I could fake being better but as you all no thats close to impossible plus i shouldnt have to do that anyway... just wish there was more I could do... anyway I guess that's my first vent and maybe coming here I can get some feelings out and be a little less stressed...

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    hi mckinney,

    first, welcome to the greatest circle of friends who truly understand everything that you are facing....this is a home filled with compassion and knowledge....you have found a place where you can get answers to your questions, and you will never have to apologize for the way you feel.

    Second, sounds like you made an excellent decision whil in key largo (i love that place). Also, sounds like we will all learn from your experience at the research clinic....my rheumy always checks my finger tips, but i never realized she was looking at the "blood vessels for auto immune issues." I am interested in learning more about this.

    I know this illness has really been a drain on your young marriage and children, but believe me when i tell you that you should feel better soon. There are medications out there that really do help, and hopefully you will reep full benefit from the Plaquenil....i notice you are on 200 mg, most of us are on 400 mg (200 mg twice a day). My dosage was recently reduced to 200 mg, but it was after i started taking the methotrexate.

    I was diagnosed with fibromyalgia in 1996 and the lupus diagnosis was not made until 2008....it can take a long time.

    Also, we have an incredibly special member named Rastagirl (i am sure she will be along very soon). Her illness has been in remission for many years now, so there is the chance that yours will do the same. Mine is very active now, but my dr. believes i was also in remission for several years.

    You will find several young mothers who are members here, and they each suffer with the guilt, etc. of not being able to "do all for their children that they want". They have each learned to adjust their activities and are doing wonderous jobs of being moms through this difficult process of having to learn how to live with lupus. they all support each other and offer great advice.

    Please make yourself at home here, we will always be by your side.
    Phyllis

    share a smile today

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    Quote Originally Posted by Mckinney906 View Post
    Thanks Brian for the welcome! I am glad I found this place... I really need some place to get my feelings out (I also have a counsling appointment Tuesday) But I am just worried for my husband he is beyond stressed and I have always been the "everything will be okay cheerleader" in my household and since I have gotten really sick the past 8 months I havent been that way so it's taken a toll on our house... our marriage is great but there is just this looming depressed feeling over our house which I am sick off... he has his own set of issues OCD, Chronic severe migranes etc. not to mention the thousands of dollers in medical bills over the past 8 months have needless to say really stresses us out... Sometimes he tells me he feels like a single dad when he has to come home from working all day and take care of the kids until bedtime... makes me feel so bad... I just wish I could fake being better but as you all no thats close to impossible plus i shouldnt have to do that anyway... just wish there was more I could do... anyway I guess that's my first vent and maybe coming here I can get some feelings out and be a little less stressed...
    Hi Mckinney,

    Welcome to your new family. You can vent and come here any time you to get some feelings out and be fully understood, because all of us here, know exactly how you feel. Give your husband a little time to get used to the idea that you are not the same person you were before you got sick. Just come here and talk to us, whenever you need to.

    Debbie

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    Default Hello Mckinney

    Welcome to our little corner of the world. It's a warm and cozy place to hang your head or to help hold up the head of someone else. As you have already seen, it is a place of compassion and understanding.

    IMHO, one of the most important aspects of your health is your mental approach to this battle. We truly understand the exhaustion, the frustration, the pain. We also understand feeling much worse than we look. You are free to vent here anytime...we all do! Hopefully, the more time you spend here, the more empowered you will feel in terms of fighting this beast, so that you may be as healthy as you can be, every day. There are some truly inspiring stories here, as well as knowledge, information, and friendship to be gained.

    Give the meds some time to work. Learn as much as you can about this disease. Knowledge is the most powerful sword you have in this battle. Be informed about your illness and decide, here and now, to take charge of your health and well-being. Treat your doctor as your team-member. If you don't like the level of care you are receiving, if you cannot communicate, if your doctor doesn't listen to you, kick him or her off the team and find someone who is focused on your wellness.

    We are here for you. Hang in there. You and your husband will get through this. You will learn to manage this beast to the best of your ability, and when you do, you will not only be helping yourself, but you will also help him. He is stressed because he loves you. It is difficult for spouses and children. But you will adapt. The sun will rise tomorrow, and you will fight another day. We'll be right there with you.

    Wishing you wellness,

    Jana
    Life is measured not by the breaths we take, but by the moments that take our breath away.

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    Default Hello Mckinney and Welcome

    So much stress for a young mother and wife. I am so very sorry that you are going through this but know that you are not alone. We are here for you to sound off any time you need.
    My name is Kim. I am a 38 year old mother of 3 and wife. I was diagnosed with Lupus 5 years ago after suffering for 3 years with severe whole body edema and mild joint pain. I was recently also diagnosed with Sjogren's disease which really freaked me out because he explained that the benefit of having Sjogren's is that you are less likely to have major organ involvement but more likely to have lymphoma at some point and I had a CT that had prominent lymph nodes around my pancreas and liver (which my former rheumy read as negative) so now they are talking lymph node biopsy.
    Anyways, you are not alone in your struggle and you have found a warm and caring group of people here.
    Good luck to you and please keep coming to the site!!

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    Hello McKinney...

    Sorry for sliding in here late with your welcome! I was a bit overloaded last week....my son was getting home from an exchange trip in Japan. Life got in the way of me responding to any and all newbies. I've got some ground to make up.

    But I wanted say Hi and let you know that you are not alone in your feelings and struggles with this illness any longer. We'll all pull up alongside you and encourage and support. It helps to know that there are people that truly understand what you're going through. That in itself, can do wonders for your peace of mind. When the rest of the world turns their back on us, here's where we come to find those that will never turn away.

    Finding out you have Lupus can knock your whole world off balance. Especially in figuring out how to deal with the day-to-day pain and suffering and keep up with your husband and children. I understand your frustrated feelings of being so sick you can barely take care of yourself, let alone meet the needs of a family. How old are your children? I struggled for quite awhile after my kids were born, trying to balance working full time and being a mom....along with dealing with Lupus. The stress nearly sent me over the edge. That was the point in my illness when I found my way to a therapist...when I was truly questioning myself as a mother and dealing with terrible guilt over meeting my children's needs. I'd always tried so hard to be strong....do it all on my own....and had convinced myself I didn't need to talk to anyone outside of my family and friends. That I could handle it on my own. The therapist I found was truly a blessing.....a friend that knew I had Lupus referred me to her and this therapist had Lupus herself. She changed my entire life. It helped tremendously to have someone to share my feelings with about my struggle as a mom and to help my husband adjust to my life...our life...with an illness. She helped me deal with the grief over losing my good health, that I hadn't even realized was there. It would have been wonderful to have a place like this forum when I was going through it, but that just wasn't the case.

    I just wanted to let you know that you are not alone in your feelings. And that you should hold on to your Hope. Today, it may feel like you're going to be sick forever....but with the unpredictablility of Lupus that we ALL know about, always comes the chance for Remission. I say that with a capital "R", because it is a real possibility.

    I was diagnosed at age 18, right out of high school and was pretty sick for the first 5 or 6 years. But after working with my team of doctors and experimenting to find the right medications, or in my case, combination of meds, I have been in a strong, ongoing Remission for the past 17 years. That also came about, I believe, because I adjusted my life and learned what my stress triggers were. The worst possible stress for me was working full time outside the home....so after some soul searching and priority evaluation...I quit working, went on Social Security Disability and have been a stay-at-home mom for 13 years. I believe that was the #1 decision that made a huge difference in my ability to cope with the day-to-day struggles of Lupus and retain my sanity.

    I hope this has been an encouragement to you....and hope that you will stick around here and share and learn with us. I don't think you'll find a better group of Lupie sensitive, caring people anywhere in the world.

    Fondly,

    Lori

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    Hello McKinney
    Welcome to the site. Sorry to hear about all you have gone through and have endured. Thanks for sharing your story with us here. Yes, I can confirm you have come to the right place to find/meet a bunch of cyber friends who will support you and respond to whatever your feeling, enduring, unhappy with, in pain or just want to chat

    Welcome again and I do hope things start to turn around for you!
    Lots of Love!

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    Hi McKinney!
    You just found your new "virtual family" in this site. Welcome! It's a wonderful place to be on a flarey day and on a "normal person" day. The members on here are full of love, encouragement, support, advice, and wisdom. On here you will be able to get your feelings out without fear of ridicule, judgement or resentment. Hope to see you around!
    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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