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Tina08
06-09-2009, 06:23 AM
I have had a blood test come back positive for Lupus. 3 months ago it was normal. I have been sick off an on since September. My feet and my fingers turn blue and white. Also been diagnosed with Reynaulds. Back in September I realized that I would have to yawn in order to get a deep breath of air in me. By January I was unable to yawn to succeed in getting air in me. I am married, but feel that I am alone in this new journey. My friends are giving me a lot of support learning more about this disease, but my husband tends to be very busy. My friends are always there for me to talk to you but I know they have their own issues and I hate bothering anyone with any of my problems. Just wondering if anyone else is experiencing this.

gina
06-09-2009, 06:43 AM
Welcome to the group. we all have similar issues you are not alone. feel free to ask questions join the social groups there one for venting real good one.

remember you are not alone we are here for you.:yes:

dsunshine
06-09-2009, 08:58 AM
Hello Tina!
Welcome to the site! Good News...you have come and found the right place to vent, find support, understanding, compassion, and cyber friends who have similar issues as you! Yes, I have experienced similar to you as my boyfriend left me when I was diagnosed in Nov. 2008. He left in Dec. 2008. Better he left then than if we had gotten married. It was hard to deal with along with an incureable disease that most people don't even know exist but I am coping, healing, and on my way to remission...FOREVER!
Yes, friends/family do try to understand but they have no idea the thoughts that swim in our heads or the feelings that we have or endure that come with lupus. Only someone with Lupus will understand your frustrations, anger, resentment, isolation, moodiness, and depression just to name a few.
So I say welcome and I hope you find friends and lots of love here as I know you will. You have already made one...ME!

mountaindreamer
06-09-2009, 09:46 AM
hi tina,

we welcome you with open arms. this is a wonderful place for education, support, and compassion. I am so glad your friends are there for you, and you will make even more friends here. I found that once i had everyone here to talk to and learn from, that i did not need to talk to family and friends as much, therefore, my disease was no longer the main focul point of my various relationships. Sorry your husband is not there yet, but hopefully he will realize the significance of the disease, and he will be the rock by your side. Sometimes husbands seem to distance themselves from this, because they have a natural instinct to fix things....but they can't fix this.

browse around the threads, join in with posts, and be a part of a great group of people.

Delphinia981
06-10-2009, 05:13 PM
Hey Tina,

I'm right there with you, sister. Blood was normal not so long ago...and then BAM...I'ev got Lupus. My husband is struggling to come to grips with things...especially because he doesn't really "understand" the disease, what it does to me, and why there are some days that I'm literally just a bag of bones on the couch. We also have a young child, so that makes things doubly difficult for us. I've treid to educate Bill, and he's even gone so far as to talk to my rheumatologist (which I recommend for your husband), but he's still coming to grips with it just like I am.

You will find solace and camraderie here. I know I have. Sometimes I feel so alone, and then come here and see the struggles and triumphs of people who are just like me...and I feel better. I know you will, too.

Looking forward to getting to know you better!!

abbasgirl
06-10-2009, 06:05 PM
((((Hugs)))) and welcome. You're not alone anymore sweetie. Talk all you need and want to. We're happy to listen.

SandyR
06-10-2009, 07:05 PM
I ...feel that I am alone in this new journey. My friends are giving me a lot of support learning more about this disease, but my husband tends to be very busy. My friends are always there for me to talk to you but I know they have their own issues and I hate bothering anyone with any of my problems. Just wondering if anyone else is experiencing this.

Tina,
Like you I am new and feel that I am alone on this journey. My friends and family are trying very hard to be supportive and I know I can call them anytime to talk about my journey, but they just don't fully understand how this feels to be so intouch with your body and so completely out of control with what it's doing. That lack of understanding makes me feel like an island unto myself. I can see that there are other "islands" out there in this vast sea but I feel like they are sooooooo far away.
Some of my family members have even become a little smothering, which I finally had to tell them that even though I know it comes from a place of love, it just wasn't leading me to a place of answers, clarity or healing and they have to allow me to stand on my own when I can and come to them when I can't. That smothering feeling also makes me feel alone because I feel like I have to sensor what I am saying about how I am feeling (physically) since they seem to get overly protective on my behelf (angry and frustrated and wants to fight my battle) which I appreciate that they love me that much, but I had to tell them to stop because it's not conducive to productive healing.
Everyone on here seems so nice. I think we might have found a place of identity here. Good luck to you on your journey.

purple_butterfly
06-12-2009, 07:05 AM
You are not alone in your journey. We are here for you and we understand.
I know how you feel. When I was diagnosed with Lupus, my husband did not know what to do. He did not want to talk about it or deal with it and started to push me away. He began drinking heavily which did not help my symptoms. I got to the point that I was ready to leave him and then he started to accept my disease but I realized that letting him and my kids watch me suffer like this was breaking my heart, so I pushed them away. I was even thinking about cheating on him because I knew this was the one thing that would make him leave me. Fortunately, I could not go through with it, and things are ok. He will never understand my disease or the symptoms, but he is more supportive now.
Like you, my hands turn colors in extreme temperatures. Extreme hot and extreme cold make my hands turn purple and white and I also have the "air hunger" where you just feel like you can't get enough air into your lungs. I also have severe pitting edema throughout my entire body and joint pain all over (which my rheumy sais is not arthritis from lupus but pressure from the swelling...I disagree). I have constant headaches, staring spells, peipheral vision loss, numbness in my arms and legs and moments where my brain forgets to tell my legs to move or hands to hold onto something (I have broken more dishes in the last several months and decided to switch to tupperware!!).
Anyways, you are not alone. Any time you need someone to understand you, please come to this site. You will find many friends that understand your symptoms and support you in every way possible.
Remember to keep one spoon for an emergency!!
Love and peace!
Kim