Newl diagnosed and so scared!

General
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So, I was just diagnosed with SLE and antiphospholipid syndrome less than a month ago by a hematologist (I know, why a hem? IDK). She basically said "yep, you have this, you have to cancel your surgery next week (was planning a hysterectomy), continue your aspirin and see me in 2 months". basically leaving me high and dry. I was in tears and not happy.

Now, I am a Nurse and am fairly well educated and knew to immediately call my neurologists (seeing him for recent migraines and TIA's) and my gynecologist. Long story short, I did have to postpone my surgery due to inadequate anticoagulation and a recent TIA episode (according to anesthesia, will not give general anesthesia within 3 months of the episode). Surgery is now in June.

I am angry... I am scared of another episode ... I don't know what a "flare-up" feels like yet ... I am so, so tired ... I have had worsening depression to the point that my psych has taken me out of work for a period of time ... I have no appetite... I feel like the Lupus is getting worse already!

The only good thing is that I have an appointment with a really well known Lupus specialist at John's Hopkins next Monday.

I really just need a pep talk and come encouraging words and tips about when you all were just diagnosed. What did you do to learn about Lupus?

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wow. i so remember the day i was diagnosed. the doc walked in the door, was talking about my lab work, and was like "and oh yeah, you have lupus," it was the most shocking moment.

But know your already a step ahead. A lot of us didnt have websites like this back then to discuss and ask questions. it sounds like you are already seeong specialist which is a really good thing.

I ave never seena lupus specialist - just a rhuemotologist - best in arizona.but that doesnt make him nice. :) LOL.

anyhow. you are goingto be okay. It sounds like this clotting factor and the reason your surgery was canceled is definitely more becuase of lupus. Lupus does affect the blood. It goes unnotticed sometimes by most practitioners.

Your gong to be fine.... you really must approach each day as an individual day. ot thinking about tomorrow or yesterday.Thats the best advice I can give you while heartedly.

Stress cuases the flares quickest. and colds.

I have had tis disease my whole life. ANd it plays no new tricks. its the same game in a different parts of your body.

the best thing you can do for your self is start writing in a journal- every day.

Say if its hot or cold, how the waeather is ... ur mood... how you felt after eating certain foods, what time your going to bed, how much sleep.

If you want to educate yourself quickly- a journal is recommnded. And this forum really is s encouraging. I have been emotionally spent. and coming here... hearing other people that go thru the exact same thing-- it really makes you feel like ur not alone.

Please ask direct questions anytime/We are all here for you.

I juststarted a new group today-- for women-- on women issues. mothering, being a wife or partner, career, sister , friend, daughter... all as how it related to being a woman.

so feel free to join if you seem to ever want tp discuss "girl" stuff as it relates to lupus.

I wish you the best today, tomorrow, and many days ahead.

Pay attention to your body...trust your instincts.

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btw, i see a hemotologist aso - only 1x a year. but it was often during childbearing years. My platelets extremely Low... under 50K and 30K adn i would hemorage after delivery of my first baby.The blood is directly related to lupus.

so if not for this clotting issue, they may have never caught the lupus. the underlying condition.

a flare: your immune system becoming extremely overeactive. causing uncomfortable symptoms like: headaches, fevers without infection,joint pain, swelling in weird parts of your body- neck,face, head, feet, hands, elbows, anywhere... then internal issues-- with organs - heart - lungs, spleen, liver, kydneys,stomach problems.....

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I was also diagnosed with antiphospholipid antibody syndrome last 2004. I had two miscarriages because of that. Last year I was diagnosed with SLE. A few years back I had GBS. I survived. You will too. It’s frustrating, but you will make it. Just don’t give up. I guess your surgery was rescheduled because of the clotting issue due to APS. You’ll be okay. Hang in there. Pray.

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i dont suffer lupus but have friends that do, i suffer, agoraphobia, post concussion syndrome, M.E and many smaller illnesses, but know how you feel, its all a bit much when you have just been diagnosed, but it will get better...mentally when you share with others so you know you are not alone and physically when you learn more and find things to help you, mine is my diet i have changed. xx

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Hi, Im Grace, was diagnosed with SLE June 2000 va ans machine.
I agree with LIFEwithLupus, now there are many social groups etc.
Do not be scared it wilp cause you to not get into remission.
It is scary of not knowing, especially flares. A flare consist of many, but basically you just do not feel well.
There is so much that can follow, i have bullous phemphigoid, RA, Rynards etc.
But you have a great support group.
You mqy want to look at lupus fb. Lupus Cloud is my fav on fb. So posative, Posatively Living with Lupus, Etc have me glued to my fb

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Man with lupus and APS.... Several blood clots over span of two years.......this forum has been great to help

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I"m with you. I was diagnosed just a week ago with skin lupus and moderate arthritis. It explained a lot. I thought as I was getting older I was getting lazy because I was always tired. Come to find out it's the lupus that has me fatigued all the time, who wakes up tired I use to ask.. Now I know, lupus patients.

My mom has had it for a while and when she was first diagnosed it was bad. Some days she couldn't get out of bed but she's managing much better now. She's off meds and just takes vitamins and daily supplements and the only sign I see is her skin had drastically changed colors.

I'm a bit overwhelmed because it's just so much to remember. I find it hard to remember to take all my pills daily, keep on sunscreen when i'm out but try not to be out between 10-4 which is hard cuz i work. I Just noticed a florescent light in my office that isn't helping the cause any and I need to figure out who I talk to about getting it changed. It's just a lot and me being only 36 it's very challenging. I feel like my Grandmother most of the time.

I say to you Good Luck and hopefully it'll all be ok. I'm new to the group as well but so far it's been nothing but great people to help. We can lean on each other if you like, this is definitely a learning experience the requires a lot of support.

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I’m a 31 year old mother of 2 (2 and 7 months) and i was diagnosed 3 weeks ago. I was in tears for 2 weeks scared our of my mind that this would mean i wouldn’t be able to give my kids all they deserve, or worse, that i wouldn’t see them grow up. I get how scary this can be but as my husband reminds me I’m here now. Do i want to waste this time I’m feeling relatively ok being upset. I learned there are things i can wear and eat that may give me my best shot. Deep breath. It’s ok to be upset but you have support and there are things you can do to help yourself. It sucks but were in it together.

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Knowledge helps you fight fear. So stay on this site when you can and do your own research on the Internet. Once you are well informed about your condition, you can be your own "doctor" on most occasions. It's no fun to be "afflicted" yet you learn how to work with disease just like it was a person! All the best, LupanCatwoman

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Hi Sherry,

I know this is all new and disheartening, but the best thing you can do is EDUCATE yourself and those around you. Let me duplicate Lupancatwomans' comment and say you will learn how to work with the disease. I personally started a journal, I kept track of everything I ate, and all the activities I did. I would also keep track of pains, fatigue and any other issues I had. I was able to figure out that certain things almost always threw me into a flare. Being in the sun too long is one of the things that almost always causes me to flare up. Make sure that you rest, when you clean, take breaks as you go.

The people in this group have taught me a lot (even if they don't know it, I am always reading) and I have done a lot of my own research.

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Go to the website for the Lupus Foundation of America. There is a lot of information on the site but most importantly, there is a list of support groups across the country that are organized under LFA. This means they are actually informational, not just pity parties or people trying to one-up each other with horror stories. That is the best place to get started. I would also advise you to try and calm down. You didn't get this overnight and have probably had it for a while. Usually with Lupus, things won't escalate overnight and it sounds like you're freaking out just a little. Try to relax. Worrying about what is going to happen isn't going to stop things from happening. It's just getting you stressed and tense which won't do you any favors. I try and live by "It is what it is." Meaning worrying isn't going to make it any better but it may make it much worse by causing even more stress.

The rheumatologist will start you on the medication you need. You'll be there soon. Many of us live pretty good lives with occassional periods of feeling rather crappy. I've been in a flare since December but I just started a new medication and hopefully will be feeling better soon. Until then, I'm just focusing on living my life the best way I can.

Good luck and let us know how the rheumatology appointment goes.

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Another good site is the hospital for special surgery- internationally renowned they have a very active lupus program and have done a great deal of research in APS

I also have APS as well as hemolytic anemia and am followed by a hematologist for that and yes aspirin is the maintenance RX for APS My SLE is followed by a rheumatologist and various complications of lupus are handled by the appropriate specialist when needed. Unfortunately this disease may require input frommultiple physicians in order to get you on the right path My fav complaint is that I wish I only had ONE doctor- ain't never gonna happen

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It's ok to be scared. Education is key. There is a ton of information on this site, as well as individual experiences. There is a really good book by Daniel Wallace called The Lupus Book and it covers how lupus can affect each organ system, it explains all the blood tests and doctor visits, what to expect during your doctor appointments, and the different types of treatments. It's very informative and I learned a lot from that book.

Flares feel differently for everyone. I get extremely tired and achy. I also feel like I have a low-grade fever and can't get warm. Stress is my biggest trigger. I'm now beginning to simmer down the flares with medication that the rheumatologist put me on (Plaquenil). It has been wonderful with the fatigue too. I was needing 12hours at night, plus a 2-3hour nap each day. With the Plaquenil, I only need about 9 hours of sleep at night. It's wonderful... especially since I kind of need to stay awake for school!

I have heard very positive things about the rheumatology department at Hopkins (I'm in Maryland!). It's essential to find a good doctor who is willing to take the time to sit down and really listen to you and answer all of your questions. Your doctors, yourself, and your support network (family, friends, this site, etc) are your lupus fighting team.

When I had my first rheumatologist/lupus appointment, I went in with a list of questions for the doctor. Before I read that Lupus Book, I had just researched online about the antibodies I tested positive for. That led me to my questions for the doctor. Once I read that book, a lot was answered, but I also had a whole other list of questions. Ask away! I've asked doctors and the folks on this group and both have been a great source for me.

Listen to your body. If your body says, rest, then rest. If your body says it doesn't want to overload on activities, cut your plans short. Our bodies know just what they need, but we have to listen to them. You will learn what helps you manage flares, what your triggers are, and how to prevent flares (ex. stress management, relaxation techniques). If needed, your doctor will place you on medication. Finding a medication that works for you can be time consuming and frustrating, but once you find the right combination or drug for you, you'll feel a lot better. Some medications may be to help prevent flares, or to keep them from being as bad, others might be as prophylaxis to prevent anything from occurring, like how people take baby aspirin to help prevent clotting.

Wishing you the best in this new journey!

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Sherry
What doctor are you seeing at john Hopkins? I also have lupus and APS…in fact I’m being tested right know for my levels. Do you know what your levels are with antI cardiolipins? What did he base the dx of lupus on? I have many autoimmune disorders and it’s very hard. Most you can manage. I’m so sorry about your TIAs…hang in there…

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Hi

I was diagnosed last summer and the first thought i had was to plan my funeral. Since then I mentally feel better. I have a great rheumy. I have 6 symptoms but I am not in pain, thank God! I have sle also. The more i read about lupus the more confused i get. One day at a time. my rhuemy increased my plaquenil to 3 per day i don't know if that makes me less fatgued but this has been the best week i have had in 3 months. keep your chin up!!. Hope you get some answers John's Hopkins is the best.

Cindy

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Thank you so much, cbk42, for posting this (even if it was not for me). I am 31, mother of 2 (3 and 4) and was just given the diagnosis Thursday. I have been okay until today for some reason - I think the shock wore off. But, reading your post was what I needed to know- that I wasn't alone and it was okay to be upset at first. Thank you!

cbk42 said:

I'm a 31 year old mother of 2 (2 and 7 months) and i was diagnosed 3 weeks ago. I was in tears for 2 weeks scared our of my mind that this would mean i wouldn't be able to give my kids all they deserve, or worse, that i wouldn't see them grow up. I get how scary this can be but as my husband reminds me I'm here now. Do i want to waste this time I'm feeling relatively ok being upset. I learned there are things i can wear and eat that may give me my best shot. Deep breath. It's ok to be upset but you have support and there are things you can do to help yourself. It sucks but were in it together.
18

Hi, Sherry!

First of all, getting bombarded with multiple diagnoses all at once is a very scary and overwhelming thing to go through. I have been living with Lupus, Mixed Connective Tissue Disease, & Rheumatoid Arthritis for a little over 16 years now, so a little over half of my life. I also tested positive for lupus anticoagulant (which is classified as antiphospholipid syndrome). I suffered a massive stroke when I was 22, and it has been a little over 7 years now, but I still have many residual effects from the stroke (such as short term memory loss, extreme anxiety, severe depression, and I am physically unable to do many things I once enjoyed doing before I had my stroke). However, I have been blessed to survive a stroke that most people don't, and even though I can not walk nearly as well as I used to, I can walk.

I suffered my stroke exactly 8 years to the date of when I was diagnosed with Lupus, Mixed Connective Tissue Disease, & Rheumatoid Arthritis. Having to deal with degenerative disorders and having a massive stroke is something that I would never wish on anyone. From what I hear, recovering from a stroke alone is a very long and painful process, but to do it even though I live with several degenerative disorders is something that is shocking to me. I don't know how I managed to find the strength and courage to defy the odds and push through the pain, but I did.

I have learned to take each day as it comes--be it good, bad, or indifferent. On the days that you don't feel well, rest as much as you can. I've learned that getting as much rest as possible is helpful on those bad days. On your good days when you feel great, it is important to remember to pace yourself. Even though you feel like you have all the energy in the world, don't overdo it. Take little breaks throughout the day, and remember that just because you didn't finish your "to do list" doesn't make you a failure.

I found an awesome website that I found to be quite helpful. There is a ton of information you might find helpful. When you have a chance, go to www.butyoudontlooksick.com

Keep your chin up & keep on smiling.

I hope you feel better,

Shannon

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I was afraid to but it all will work out for you. You are not alone I will be praying for you. everything your going through so many of us with lupus has been right where you are, but please know it will get better. Just like me you have to learn your triggers and stay as stress free as possible. I tell myself God made me and he said I an fearfully and wonderfully made! and so are you. Give it sometime and keep seeing your Dr. and you will be fine. be blessed godsgirl

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Hello Sherry,

Try not to be frightened and never let Lupus beat you mentally and like yourself i have antiphospholipid syndrome known as Hughes syndrome for short, i've had bad DVT besides chronic strokes and also TIA'S...they won't operate until they know how your bloods doing with the asprin as i take a baby asprin now daily of 75mg.

TIA's can be frightening but i've learnt to take the lot in my stride now after 27yrs of going through the mill and being born with Lupus....regarding flares it's according to how bad they occur they can last as long as 2wks the most but if you get a chronic flare where more issues are involved they can last upto 6wks or more.

See how you go with the meds and if you don't feel right and you have concerns get intouch with the specialist straight away plus we're here for you and i hope the appointment on Monday goes to your advantage.

((Hugs Terri)) xxx