[writeright72]

:sad:

Hi, everyone. I was diagnosed with lupus last month and I think it's just finally starting to sink in that I'm sick. I mean, I know I've been sick for years, but to be diagnosed with something as serious as lupus is really freaking me out. My PCP (Primary Care Physician) is wonderful, and he was going to send me to the Mayo Clinic, but when my ANA came back positive, he sent me to a rheumatologist. Two months later, I went to see the rheumy and before ordering blood tests, he told me that he didn't think I had lupus because I had no organ involvement. He did, however, order a full lupus workup because of my symptoms (sun sensitivity, joint and muscle pain, hair loss, etc, etc) and because of the fact that my sister had lupus. I left the rheumy's office thinking that lupus had basically been ruled out.

Before I returned to the rheumy for the test results and dreaded diagnosis, I went to see an allergist who told me that I'm allergic to onions, strawberries, and the list goes on and that my allergies could be causing rheumatological symptoms. This is why I was SO SURE that I didn't have lupus! The allergist started injections, but I started having reactions to them and had to stop. In the meantime, I went back to the rheumy and he told me I had lupus and put me on Plaquenil and Mobic.

I have been having a really hard time and only just recently started taking the Plaquenil. I just need some advice on how to cope and how to enjoy spring and summer with my two boys without getting sick from the sun. We love biking, amusement parks, picnics, etc. I break out in horribly itchy rashes from the sun and I get really fatigued and nausea. I can't stay home between 10 - 4 either, because I have to pick up my son from school and do other important things. What do I have to do, become a recluse? :worried: Gosh, I'm so depressed....


Stacy

 

[SingleGirl]

I'm having a really hard flare and took 3 pain pills (and I never ever take medicine beyond ibuprofen/prednisone) so I'm sort of too out of it to write.

However, I wanted to send you hugs. I'm here reading and I read your post and I'm so sorry.

I've been sick for 13 years and it still makes me depressed. I want to be out playing beach volleyball and dancing the night away and beaching it with my friends. I want to trust my relationships to a point where I can let people see me so vulnerable. I'm 29... and it's still hard.

I hope you feel better soon... give yourself some time to adjust and don't beat yourself up for anything you are feeling. Let yourself grieve... it's ok to do that as long as you promise yourself that at least once a day, you'll remind yourself that as long as you are alive, there's still life to be lived.

Hugs, feel better soon.

 

[sunflowergirl2]

Stacy, I've had lupus for 12 yrs, and think I'm still in denial, at times. I do try to avoid the sun between 10 AM - 2 PM. But if I do go out during that time, I use 30% sunscreen. It must be extra hard having young children, I wasn't diagnosed until I was 40. Used to be a sun lover, that has been a big adjustment for me! HUGS!!!!!!!! Cathy:hissy:

 

[neongirl]

Stacy, A Lupus Dx is hard to handle, and, I don't think I've mastered how to deal with it yet myself. I too have children to run to and from school, and they love to go swimming etc.. Some things that I have done to help are : Had the windows in my vehicle tinted as dark as legal, wear a pair of big dark sunglasses (luckily they are in style now:hehe: ), use a sunblock containing mexoryl(sp?), traded in my shorter shorts for bermuda shorts and capri pants, sit under a shade tree and or sun umbrella at the kids outdoor sporting events, wear a hat with a wide brim, take time before a vacation to pre arrange a certain amount of indoor activities, for example visit a meuseum, find a hotel with an indoor pool. I hope this helps some .

 

[Katharine]

Hello there and welcome!!

If it can reassure you, I have been ill for nine years and diagnosed for one! And, I am definitely, frequently still in denial. For me it is a happy denial and a still sensible one. I would never ever go so far as to throw out my meds. I know too much about the disease to be doing silly things like that. But, I do like to "believe" that there's nothing wrong with me (apart from the obvious mental insaneness :lol: )!

I think that with time we all learn to enjoy life differently. I never aim to go out in the sun but occasionally it can't be helped. When that happens I cover up. I haven't yet got my burkha out but sometimes wish a fashion would develop for them :rotfl:

Seriously though, I have bought myself some good sun protective clothing (you need to be sure the manufacturers "claims" are justified) and also have found some really nice 50spf sun cream which is like a nice moisturiser and doesn't feel at all sticky or greasy. I wear that on my face all year at any time I'll be out for long.
In summer, I am trying to bring wide brimmed hats back into fashion.

You are still very newly diagnosed and your meds won't have had much time to take effect. Plaquenil in particular takes a long time to start working (often around 6 months) but is well worth the wait as it is a very beneficial drug. If, a bit further down the road, you are still not getting adequate relief, there are many other options that your rheumy can use to help you.

Once good treatment has been started a lot of people will find that life does go back to normal to a great extent. It will take time though, you need to be patient. Obviously, lifestyle changes such as pacing oneself and avoiding the sun are still important.

bye for now,
Katharine

 

[Maia]

It's a big adjustment to make... the realization you have lupus. There are some changes that will soon become second nature to you & you won't even think twice about them after a while.

Plaquenil will very likely greatly help the sun rashes, and you very well may be able to go out in the sun for brief periods of time once it has a chance to kick in. Especially if you wear sunblock if it's between those primetime sun hours, a hat, etc. Plaquenil may not have enough time to kick in for this summer though. And it's always better to be safe than sorry with respect to sun exposure. You've already been given excellent advice, but I just want to stress that you may be able to better tolerate the sun very soon with the help of Plaquenil and some sun protective actions on your part. It has certainly worked out that way for me. But I'd never go out tanning or spend a day at the beach again!

 

[Jenkay]

Hi there,

After a couple of years I'm still in denial at times, oh it must be something else I think to myself, but down deep I've become OK with it.

As far as summer goes, you just do some special summer shopping. Learn to love hats, Kohl's, Target, TJMax all have great hats not to mention the department stores at the mall. I have quite the collection now.

Then you'll be on task for finding the light weight long sleeve shirts. This one is not easy so when you find one you like buy it! I get the Eddie Bauer catalogues and as soon at there spring or summer shirts go on sale (they usually have one or two that are very light weight) I order a tall (i'm 5'9) because the longer sleeves cover up to my knuckles. I usually wear the shirt open over a tanktop which keeps me cool but covered.

I typically wear capris or a knee length skirt and I refuse to give up my sandals so I do lather up the calves and feet with sun screen.

I really struggle with fatigue but as often as we can I head for the park with the kids, find a shady spot under a tree and picnic, read books, play games on a blanket.

And bike rides we take in the still lit evening hours.

If it is really hot I wait for the cooler hours of the day.

There is so much I could once do that I no longer can but we have to find new joys and new ways of doing things.

Hope you have a great summer!

 

[Karly1964]

Diagnosed last April

Yes, having lupus is hard to get used to, I love swimming:swim: :clock: But I wait for a time when the sun is going down and mom's pool is mostly in the shade. I am trying to get used to using sunblock:wink2: the sports kind that won't sweat off since that is a problem for me. I wear longer shorts, and big baggy short sleeved shirts, but since they are so baggy they cover up most of my arm, I get them at Walmart, if you have one, in the men's department, they cost about 4.68, something like that I can afford. I don't wear sandals because I am a clutz and always fall down. Sometimes a baseball hat will find it's way onto my head, needs to be there more often. I just cannot take the heat well at all, I feel sick most of the time during the summer:sunny: so I try to find things I can do inside, but I do spend lots of time in the pool whenever I can. I don't have kids though my neices can occasionally entice me into the pool before those really hot sunny hours. I also go through stages where I just need a few moments to cry, or have a feel sorry for myself moment, but I try to focus on what I can do. I hope to be more active this summer so I am trying to find ways to be busy without being too sick. Take Care, try and use your imagination and sunblock! Karly

 

[Kate*H]

I was diagnosed last May and I was SO much in denial that come summer I went to the beach and sat out in the sun for 3 hours!!!. Now THAT was a wake up call. I got a red firey rash down both arms and it lasted a couple of weeks. Now I really watch it. I love to swim ,and try to do it early morning or late afternoon. I have to go to the gym to do it, so it's pretty hit and miss. Sometimes I'm still in denial ,but then I'll really over do it, and once again i'll get a wake up call that yes ,you really do have it. I think all of us go through that. We test our limitations for awhile. Then we figure out what works for us by trial and error. For me the most important thing is being protected from the sun ,and knowing what my limitations are. At one time I could have cleaned house in the morning,gone shopping in the afternoon, and then to the gym at night. Now I have to choose one.
Good luck and take care , Kate

 

[wheeliefab]

some tips for the newly diagnosed

Hello You've been already had good advise from the other comments but I just thought I'd add a few tips of my own.

Firstly I think it's important to develop some acceptance of your condition and to get educated about lupus. I also think it helps if you are as honest as possible with yourself, family, friends, etc about how lupus affects you, and to feel able to ask for help and support when you need it.

Accepting my lupus and the limitations that this may put upon me has helped me cope and to remain relatively stable with my symptoms. My doctors are pleased with how much better I seem compared to when I was first diagnosed, and now consider my lupus to be stable and "mild".
I think that many of the improvements in my health are not just because I'm on plaquenil treatment, but have been due to me accepting my disabilities and adapting my lifestyle.
Also my friends and family say it's easier to cope with me, now that I'm asking for support or saying when I can not do something, rather than when I was not communicating my difficulties and was "in denial", as then they were just worried about me, did not know how to help, and could see that "my pushing ahead as if nothing was wrong with me" was making my condition worse.

This message board site also has "The Lupus site" (see link up near top of page) which is full of useful info. Also if you are in UK I'd definitely recommend that you join the charity Lupus UK -http://www.lupusuk.com/index.asp as they do loads of good work for lupus (provide info, support etc and have local groups where you could meet others with this condition)

After diagnosis it did take me quite a while to accept my disease and initially I was not very good about following advise to avoid the sun, or to pace my activities, but these simple measures can make a big difference.

I'm not so sun sensitive that all my outdoor activities are prevented due to lupus but I do have to be "sensible in the sun", so I avoid sunbathing; I avoid holidays abroad at times when the climate would be at it's "sunniest"; I use a sunscreen lotion pretty much all the time in months March-October if I'm going to be outdoors (In UK you can get sunblock products on prescription so ask your GP); and I follow the general "sun-sense" advise of covering up with light clothing, wearing a hat, seeking out the shade, avoiding the sun when it's at it's strongest etc.
Doing all the above allows me to still be able to enjoy my garden, my holidays etc and have a relatively "normal life" despite my disability.

Also my doctors advised 3 things which really do help me:-

1- Pace all activities.
Even on "good" days when you may feel relatively OK don't over do things and stop before you get tired.
It's OK to need more rest than most "normal people" when you have lupus, so don't feel guilty or lazy if you need to take rest periods between doing one thing and the next, if you need a short daytime nap, if you need to delegate some tasks that "pre-lupus" were your responsibility, or if you need to cancel prior arrangements. (cancelling pre-planned things used to be really hard for me to do but friends and family do understand and believe me "plodding on" when you know you aren't really well enough can set you back)

2- Try to get adequate sleep but not sleep too much.
I usually wake up feeling as if I've not slept properly and if I allowed myself I'd sleep for hours and hours (I've been known to sleep in for a whole days at a time!). However sleeping all the time does not actually help, so I try to stick to a routine of sleep whereby I allow myself up to 10 hours of sleep a night (12 hours if I'm in a bad flare up) but then I "force" myself to get up and dressed regardless of what my body is telling me. Sometimes I'm so exhausted that I need a nap later in the day, or I'm not able to do much with my day other than the general basics such as cooking meals, but at least getting out of bed in a morning helps keep my sleep pattern as "normal as possible" and I think it helps prevent me feeling depressed

3- Try to do some gentle exercise.
This can feel like the last thing you want to do when your tired and aching, but it does actually help in the long run. Just do what you can (even 10-15 mins a couple of times a week can make a difference). I find yoga or walking are suitable things I can do at my own pace, and they help me sleep better as well as keep my joints and muscles in "working order".
I avoid doing much exercise when I'm in an actual flare up, but other than that I try to do what I can. Some days it's as little as a couple of yoga stretches but on other days I can manage a mile or so walk.
I'm currently trying to get my GP to refer me for hydrotherapy as I used to love swimming but have been finding it hard to get my motivation going and so think proper hydrotherapy sessions may help me to get into a routine to go for a swim, as well as give me a range of suitable exercises I could do in the pool

I hope this helps, good luck in adapting to the "new lupus you".
Personally I think that as long as you make allowances for your condition and adapt your lifestyle, then there is no reason not to be able to have a happy and relatively "normal" life despite having lupus