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View Full Version : New to Lupus and RELIEVED!!!



kcw9hurricane
04-26-2006, 07:24 AM
Now I know this sounds odd but I am relieved to finally have a diagnosis. I am 32. Single mom of 3. I had a heart attack at 29 and 2 weeks ago was diagnosed with several PE's. My whole life I've had many symptoms of Lupus, though I didn't realize it then, but no one ever tested me. I actually thought I was imagining everything and just learned to live with all that was going on.

However, when my doctor finally tested me for lupus, I was relieved to know there was a reason. I am on blood thinners and will be for the rest of my life, for the clots, but at least I know why I am having them.

So, for the first time in my life I feel hopeful. I actually feel like I can now begin to live. I have feared death for as long as I can remember because of everything that has happened in my life and now I don't fear it anylonger. Weird, I know. But there is comfort in knowing.

silverlioness
04-26-2006, 10:40 PM
I was also relieved to finally know what was wrong with me and that I wasn't crazy. But, at the same time, sad that there was something really wrong. It's a weird mixture of emotions.

Saysusie
04-27-2006, 04:25 AM
Hi Hurricane:
I think that we all have felt that sense of relief to know that there was a name for what we were going through and that it was not all in our heads. Also, we also went through the grieving process of learning that we had lost our perfect health forever.
It is a mixed bag of emotions and rather hard to describe. Then, when we look back on our lives and our symptoms, we realize that we suffered for years before we even realized that there was something wrong!!
So, We all know exaclty what you mean and can understand how you feel. You are not alone!!

Peace and Blessings
Saysusie

kcw9hurricane
04-28-2006, 06:08 AM
I had my heart cath done yesturday and all is well. Of course, after being diagnosed with Lupus, we knew it wasn't my heart that was causing the clots.

I am going in for a biopsy next week on my ovary.

I keep telling my OLDER bf he will have to trade me in on a younger model!!! haha

TracyDawn
04-28-2006, 06:11 AM
Hi Hurricane. I think that is a common reaction for a lot of us. I CRIED with relief when I got my results. I felt like I was a headcase but the relief in knowing I wasn't crazy (well not overly so) and hallucinating was great. After seven years of seriously starting to doubt my sanity, and having weird symptoms even before that, having a name for "it" was just something I can't describe. Course that also meant coming to terms with knowing it wouldn't go away like I was hoping either. ;)
Welcome aboard and good luck with all your testing.

Brandie128
04-28-2006, 08:42 AM
Hi hurricane,
I know exactly how you feel. I am 24 and was just diagnosed last week after many years of struggle. I was happy to finally put a name to everything that has been happening to me and to finally put the fear of sudden death behind me. I have been having problems with a clotting test called the D-dimer running past the computer measuring limits (greater than 10,000) and they could not figure out if I was constantly forming and breaking down clots or not. I lived in fear that I was going to suffer a sudden stroke or heart attack and die. I have been on prednisone and plaqunil now for a month and the test is down to 5600 (yay!). The relief it brought to me to know that while I do have lupus I can be checked regularly and not worry about dying anymore. I do have my sad moments but don't we all wonder why me? Then I think about how lucky I am to finally know and be treated and that I can live a good life with it! Its nice to know that there are support boards like this one where we can share our thoughts and support one another through each of our ordeals.

Take Care,
Brandie

kcw9hurricane
05-01-2006, 07:04 AM
Headed back to the doc this morning. More blood work. Testing my clotting levels after my heart cath last week. Also, my hip and knee on the side where I had my surgery are very stiff and painful.. I've been using hot and cold packs on my knees to help the swelling, stiffness, and pain but not much luck for my hip. Can't take normal pain meds b/c of the coumadin.

I've had joint pain for as long as I can remember but was told I had arthritis. At 19!!! Why do doctors just put it off on anything they can come up with and never look for the real reason?? Oddly enough I work with doctors all the time in the OR and even they can't answer that question.

Saysusie
05-01-2006, 10:04 AM
Hi Kcs9hurricane :lol:
Please keep us advised of how your appointment goes and how you are doing. As far as doctor's who give reckless diagnosis instead of researching....when you find an answer to that one, there will be an entire community of Lupus patients who will be ever so grateful and thankful (lol)

Peace and Blessings
Saysusie

kcw9hurricane
05-01-2006, 10:28 AM
I just came from my doc. He is sending me to an Orthopedic Surgeon to have X-rays done of my knees and hips since I am in so much pain. Gave me a Rx for it but says I may need a steroid injection.

Also, says my cardiologist wrote a two page letter to him stating he thinks I have an anxiety disorder but that my stress test and heart cath show something called Anteropical Wall thickening. Have to wait til Thursday to find out what all that means. I've looked it up and can't even find anything showing that word exists.

Tests also show that I have had at least one if not more heart attacks.

My doc was scratching his head wondering why no one has ever tested me for lupus. For years each doctor has treated one symptom ignoring the rest and giving no reason for all my ailments.

ANother week out of work. I am suppose to be getting married in August, remodeling our house, and going to Disney. My fiance is afraid there is too much stress involved in all these things and may things worse. Luckily, he is very supportive and very understading.

cassy13thave
05-05-2006, 10:36 AM
Do worry. Stress will lead to less sleep which leads to more pain. Just relax. God would never give more that you can handle. You have for the past number of years. Stay strong!!!

kcw9hurricane
05-13-2006, 07:51 AM
Cardiologist says I have had another heart attack. I know just when it was. I woke out of my sleep with chest pains...up my neck...down my arm. Throwing up, sweating...all of it. luckily I keep nitro with me. THat was the day before my primary doc sent me back in the hospital. It didn't do much damage but my doc is concerned about how many MI's I can handle.

Seeing a Rheumy the 31st for all the joint pain. THey changed me to celebrex b/c the other makes me so sleeping I can't function and that just doesn't work too well when you work in the OR> :-)

Sheryl
05-13-2006, 08:20 AM
Do they know what is causing the MI's? How scary!

kcw9hurricane
05-13-2006, 09:28 AM
20% of lupus patients have blood clots. I am in that 20% so I am throwing blood clots which in turn cause my MI's. It is nothing short of a miracle that one hasn't killed me before they found it and put me on coumadin. I will be on coumadin for the rest of my life which means I will never have any more children. I was hoping to try to have another one starting next August.

Sheryl
05-13-2006, 09:37 AM
Sorry to hear that. So you are having MI's even after being on the coumidin? And it would not be safe to go off it long enough for a pregnancy, eh? That is a big blow for someone who wants kids. I'm glad you were able to have the first two.

I am in the blood clot camp too. My rheum. suggested starting on coumidin right away, but agreed to try just asprin first. I was in total shock about the whole diagnosis at the time so I sort of freaked out about the coumidin - both my parents are/were on it. I don't know for sure if I have ever had a clot - it's likely that my spine issues were caused by one, but there is no way to be sure I guess. I am trying to convince myself that it's no big deal, and better than having strokes and heart attacks. I guess I will find out when I see him again in June whether the aspirin is thinning my blood enough to be safe or not.

kcw9hurricane
05-13-2006, 10:17 AM
I've been taking aspirin since my first heart attack. Hm?? Also, it takes a little while to become theraputic with the coumadin and my second heart attack occured only 1 week after beginning the coumadin.

It would not be safe at all to come off the coumadin to have another baby. Also the birth defects related with coumadin make it impossible to even think of having another one. So, luckily I have 3 and I am thankful.

I really haven't seen any side effects of coumadin though I know there are some. But best of all, I feel like I have peace of mind...maybe its false hope, but I have it and I know I wouldn't if I weren't on the coumadin. Hope this helps your decision some. Good Luck.

Sheryl
05-13-2006, 12:42 PM
Oops - I thought I read you had two - didn't mean to leave anyone out when I said that. :oops: