BuddyRooShmancyNShy

Update On The Lupus Thing.

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I wanted to thank those of you who posted last time...would've been back in Aug/Sept I believe when this first became a possibility. I'd be interested in hearing additional info either here or via pm or email about how you have been dealing successfully.

Long and short, I got the official diagnosis today. I have Lupus. SLE. So. On the upside, I feel like that explains a lot of the stuff I've been dealing with over the last few years. I'm somewhat disappointed in some of the docs I've seen but am so very thankful I finally ended up with one who took the time to take a good history and do the tests. I have a good team in place now and a plan.

We don't know yet how affected or not some of the organs are, but I did more bloodwork today and we shall see. I did another ANA, SED and CBC chem panel today. It looks like my heart and kidneys are of biggest concern, but generally, I'm pretty healthy so I suspect it will be okay.

One of the best things I can say about the whole thing is that now I finally feel like less of a lazy piece o' crap person for being so tired and overwhelmed. I have really been beating myself up for not being able to do as much as I wanted to. Needing the extra sleep or downtime. I have felt like a real loser for awhile due to that. I think it has contributed significantly to feelings of anxiety and depression even though my life is GREAT!

I got my stitches out today from the biopsy (forehead). My nose is finally looking better with the new meds. The pain issues are there but we have a plan. So I am really thankful for that!

So that's the update.

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[Huggy] I didn't know, I guess you discussed it during one of the times I was gone for a while.

It's good to have a diagnosis, though, right? That's how I always felt, as scared as I was to HEAR it, the diagnosis meant a plan of action/treatment could be started.

Good luck, Broo.

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Broo, first off hugs to you little missy. [Huggy] [Huggy]

I wish I could take it all away for you. You are one tough cookie, and with our love and support for you, we will help you get through this.

Here is a website that has a lot of information about it for you or anyone else that would like to learn more about it.

Lupus

I will be keeping you in my prayers for good results from your bloodwork. [Angel] [Angel]

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I have Lupus. I'd be happy to share information with you. PM me if you wish. I was diagnosed about 10 years ago. I also have Rheumatoid Arthritis.

Edited by 2pacers

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Having a chronic illness is tough at first. Its frustrating. And unfair.

After awhile, it becomes the new you. Not that you resign yourself to the disease, but you deal and it becomes just part of the routine.

Some days you can't do things. I'm having a flare right now and am living on cereal and toast. So anything physical is out.

Hubby is very understanding.

One of the most important things for me is creating a stress-free environment.

One day at a time, lady!

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BuddyRoo, you're in my thoughts.

My ex-wife was diagnosed with lupus on her skin years ago. She has never done what the Docs told her to do for it or taken any of the medication (says it makes her fat). She looks terrible the last time I saw her a couple of years ago. I know you are smart enough to do what the Docs tell you.

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A hug is in order... [Huggy]

I'm grateful for good, dilegent doctors. BOY, am I grateful! You'll get appropriate treatment and care, and be able to go from here.

Another hug, for good measure... [Huggy]

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I have lupus also. Right now, I am going through a flare that has affected the skin on my hands and other areas. For me, every flare has been different. My doctor put me back on prednesone, and other drugs. I make myself enjoy the good days, and force myself to struggle through the bad ones. My advice is to always make sure you have a good doctor, and follow their advice.

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what kind of testing did they do?im really being a bum and putting off making an appointment with a new doctor.my oncologist was telling me i needed to come in for the tests for lupus.it runs on my dads side of the fam.i live 4 hours from all my drs. so i need to find a new one.

what made them suspect lupus?i have been treated for fibromyalgia for a long time now,but im having new issues and old ones are getting less maneagable.the pain level is getting to be pretty bad.

good luck with getting a treatment plan together.

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Hang in there. One thing I found is knowing what you are dealing with makes it much easier to deal with it.

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[Huggy] Since I can't be there in person to give you one.

[Angel] that with a treatment plan in effect your symptoms will rapidly get better!

As others have said it is better to know the name of the monster that devils us.

So that we can learn how to control it.

I have a friend who was diagnosed with Lupus twenty five years ago. Since then she's met and married a great man, had two healthy kids, a loving husband, found a job she loves, most of all she enjoys every minute of her life.

And remembers that 25 years ago, the doctors gave her six months to live.

Take Care and God Bless,

Kathy

Edited by dondie

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So sorry to hear this Broo. [Huggy] [Angel]

Now you can began to find healthy ways to deal with the effects of the disease.

It's easy for your life to be consumed by your symptoms. My RA took over my life until I got sick of hearing myself talk about how crappy I felt.

After that, every time someone asked me, I told them "I feel great!". That really turned it around for me.

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My SIL was diagnosed with Lupus over 30 years ago and is still alive and kicking. She has her bad days but also has cerebral palsy so movement is complicated for her. The treatment has advanced so much over the years that it is more than possible to live with Lupus and live a great life. With your determination I'm sure you will do well, so here's some extra prayers and hugs. So sorry that you are having to deal with this!

[Angel] [Angel] [Angel] [Huggy] [Huggy] [Huggy]

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what kind of testing did they do?im really being a bum and putting off making an appointment with a new doctor.my oncologist was telling me i needed to come in for the tests for lupus.it runs on my dads side of the fam.i live 4 hours from all my drs. so i need to find a new one.

what made them suspect lupus?i have been treated for fibromyalgia for a long time now,but im having new issues and old ones are getting less maneagable.the pain level is getting to be pretty bad.

good luck with getting a treatment plan together.

I'm sorry I didn't reply sooner.

The first doctor to finally address this was the dermatologist--whom I had to fight for MONTHS to see. I've had these skin lesions since about 2008. I've had other symptoms--like the frequent pleuritis and costochondritis and general pain for some time as well but it was always considered idiopathic. I've been tested for RA 3 times. I have some symptoms of sjogren's with dry mucous membranes, eyes, mouth, nether regions. Plus I've had a lot of "women's" issues with breast, cervix, and such.

So it wasn't until I finally got into the dermatologist in August that I heard the L word. His first thought was lupus upon seeing my lesions but he wanted to try the topical chemo for skin cancer first because I seemed to also have AK lesions and such. So I did that. But things really didn't improve.

Then he did a biopsy. And it came back as "disoid lupus erythematosus". Combined with a thorough history, they made the SLE diagnosis but I'm still waiting on some other blood levels to come back. However, according to this doc and the rheumatologist, even if some of the blood levels come back good, they're going to treat as if because apparently, depending on if you're in a flare up or not, your ANA and SED levels can vary.

I also have a family history.

I'm sorry you're hurting. I can't imagine what you're going through. I am struggling a bit myself but it seems like most people I talk to are in way worse shape. Best wishes to you.

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I must have missed this the first time around. At least now you can have a plan of action so that must be some relief.

Many jingles.

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