Recently diagnosed - scared and looking for tips

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Casem
Regular Member


Date Joined Sep 2007
Total Posts : 187
   Posted 6/22/2012 10:05 AM (GMT -6)   
Good Morning,
On Monday of this week I received a call from my GP saying my blood work tested positive for Lupus. I have had a light rash on my face and have been really sick recently with a sinus infection and bronchitis. I have had pain in my knees and feet but assumed it was from being slightly overweight and inactive.  tongue
 
I have an appt with a rheumy on Thursday, 6/28 and I am really nervous and don't know what to expect. I am reading everything I can and I understand Lupus is different for everyone and there is a range of severity. I have written down lots of questions to ask, but I think I am getting overwhelmed with emotions.
 
It scares me even more when people say "its not a death sentence like it used to be". WHAT???
 
I am single and 38 and still had high hopes of having children. What if I can't, or won't be healthy enough to have a family? I am also concerned about the costs of treatments and medication as I am on a limited budget.
 
I don't mean to sound like a "Debbie Downer"...I am trying to be positive, but I think the unknown is getting the best of me.
 
Thanks for listening and I appreciate any advice you can give to a person who is recently diagnosed. Have a good day!
 
Candy
 
 

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/22/2012 1:44 PM (GMT -6)   
Sorry to hear you have this disease...but this is a great place for support and answers.
Like you said lupus is different for everyone.
You can still have children, just have to be careful if you have the blood clotting issue some people have. I can't remember the name of it, but I think it starts with an A.

Medical wise, yes it is expensive. You might want to start looking into a medical program for free or reduced medications. I take 2 meds I can get for $4 each at Walmart. Since you have been diagnosed insurance will be very expensive.

I see my rheumy 3 times a year for bloodwork and updates. I see my primary more often for any other issues that arise who will send me to others if needed.

I've been diagnosed for 1 year now. Yes, some pain will be part of your life, but it's managable most days. You will have to learn to shift gears and learn to take "me" time. Before I was diagnosed I was a go-getter. I would go from sun-up to sun-down doing things for others. Now, I have to focus on me. Keep stress free (stress is a no-no), stay out of the sun and fluorescent lights, and rest when I need to.

During the early years of Lupus the people who died was because they didn't have the medicines they have today. SLE does attack different parts of the body, but with the medical advances of today it's not a death sentence. You have to work with your doctors and they must be able to communicate between them.
Joy

Casem
Regular Member


Date Joined Sep 2007
Total Posts : 187
   Posted 6/22/2012 1:57 PM (GMT -6)   
Hi Joy,
Thank you so much for your response! I am so glad there are forums like this to share information and personal stories. I will keep reading and researching about the disease and for options to help with costs.

Thanks for sharing your story. In a weird way, I am almost relieved that there is a diagnosis because I was beating myself up for being too tired all the time, as if I was being lazy or something. My friends yell at me, but I kept thinking I was just getting old at 38!

Thanks, again!
Candy

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/22/2012 2:02 PM (GMT -6)   
I've been called "old woman" for years. I'm only 44 years old, but some days feel 100 years old.
Joy

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted Yesterday 8:25 PM (GMT -6)   
I can totally relate to the feeling old part. Sometimes the fatigue is so stout that I feel ancient.....I can't believe my body is really acting up like that!!! This forum has helped me to realize that there are others experiencing what I go through. It also affords me an opportunity to vent and ask questions. I live in a pretty rural area and come into contact with very few people who have Lupus. So visiting here helps a great deal. Hang in there Candy. There are people here who can really support you through this process.

Laura

Casem
Regular Member


Date Joined Sep 2007
Total Posts : 187
   Posted 6/26/2012 1:22 PM (GMT -6)   
Laura,
Thank you for your feedback. I see that this is a very supportive community and I am relieved to know I have somewhere to go with my questions/concerns.

I am I will have a lot of questions after my first appt on Thursday. I will keep everyone posted!

Thanks, again!
Candy

Daione
New Member


Date Joined Apr 2012
Total Posts : 2
   Posted 6/26/2012 5:42 PM (GMT -6)   
Hi everyone, thanks for sharing. I have been recently diagnosed or still being diagnosed for LUPUS. The last six months have been ruff. I keep having flare ups, it started in my lungs and then my wrist and hands swell up and the latest one is my back. I have been on 3 different dosages of prednisone to get it under control. The hardest part is that it does not seem like anyone understands what you are going through. I am thinking about finding a support group.

Well I will check in from time and time. :-)

pbjsammich
Regular Member


Date Joined Jun 2012
Total Posts : 66
   Posted 6/26/2012 7:45 PM (GMT -6)   
Candy,
I think everyone has felt that panic when they learn they have lupus. The others that have replied before me are right, this is a good place to learn and be heard and know your aren't alone.
The day my rhuemy told me of what I already knew(he had given me sheets of info and things to fill out to help him get a better feel of my symptoms) it wasn't such a shock. Of course I did go home and sit in the door of my closet and got overwhelmed with the thoughts I am sure we all have thought-job, bills, relationships, family, the future, hobbies etc.. How was I going to do anything? I keep getting told it will get better and I'll develop coping strategies. Everyone is different with symptoms and how they handle it. You will find strength within yourself that you never knew you had. Of course, you will have days that you would like to be shot(or is it just me), want to be alone and moments where you feel like there is nothing wrong. It's all the part of lupus. My advice to you is start a journal, put down everything, how you feel mentally, aches pains, everything and what you did, meds, all of that stuff. Not only will this help you in future doc appts, it will help you come to recognize flares and how well you are doing overall. Learn all you can from different sources since you are the only one that can help you. Talk to your family and loved ones and be upfront about how you feel and let them know there will be some days where you will need help. I do not have the backing of my family due to various reasons, only my Ma and Pa. I feel like I am such a burden to them since they aren't exactly spring chickens.
I fully understand the limited income and am sweating the future as to my treatment and meds and feel your pain on that.
I hope your doc is willing to listen and help and not just throw meds at you.
Take care and enjoy every little good thing!
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