Diagnosed last month but what does my future hold.

[moontreegoddess]

Ive been told I have lupus, a low white blood cell count and very defficient in vitamin D, and the buttetfly rash on my face, feeling very down. Prescribed hydroxychloroquine for my lupus and 50,000iu one a week vitamin D for 8 weeks. I don't know whats causing the low white cell count or the vitamin D deficiency. I've been told by my rhumy nurse that she thinks I will benefit from a steroid injection. I'm so scared, what's happening to me Any advise or anything is appreciated. Thank you x

[Paul_Howard Partner LUPUS UK]

Hi moontreegoddess,

The time around diagnosis is very scary and confusing. Would you like me to send you one of our free information packs so that you can learn a bit more about your condition how to manage it?

We do also have a DVD available for newly diagnosed patients. It is free but we ask for £2 postage and packing. You can order one from here - lupusuk.org.uk/latest-news/dvd

Let me know if there is anything else I can do to help.

[moontreegoddess in reply to Paul_Howard]

Thank you Paul_Howard

I would appreciate all the information I can get. I have the dvd already and have watched some of it with my partner but he fell asleep lol. Will try again to watch it tonight.

Thank you again

[Paul_Howard Partner LUPUS UK in reply to moontreegoddess]

No problem. If you send me a private message or an email to [e-mail] with your address then I'll send a pack out.

[Jude65]

Hello moontreegoddess,

Yes, it is such a worrying time when you are diagnosed with lupus. Lupus affects everyone differently and so its difficult to know what our future holds. The main thing is to be positive because many have it relatively mildly and many go through remissions whilst other can be very ill. Lupus has a fluctuating course and many of us go through good and bad patches.

The treatment is much better these days.The medics understand it better and the drugs used to treat it are more effective. I have had lupus for 20 years and am feeling the best I have felt for a long time.

So lupus is not a death sentence. We will never be the same again but can lead happy and fulfilled lives. Don't be afraid of telling friends and family, and help them to understand what's going on. Its normal to feel very low and scared but that will pass in time and you will adjust to it and accept it.

You are not alone.

Big hug.

[moontreegoddess in reply to Jude65]

Hi Jude65

You made me smile reading your answer cos for the first time I really felt like someone understands. My rhumy thinks I've had it for a very long time but very mild, I've always put things down to getting run down and being a busy mum with lots of children lol. This time however it just cant be put down to being run down, its been going on since I had my little boy 10 months ago. I usually bounce back after having a baby in a matter of a week but this time it took 3 months to get to anything like normal and then I was in horrendous back pain and then the rash came and its gone down hill since.

Im having a hard time adjusting to thinking that things wont be the same for me again, Im very active usually, I hate telling people that Im not well and feel a bit like they just dont get how bad Im feeling at the moment. I try to be all sunshine and light with everyone and I only complain to my poor partner Lea who I feel must of had enough of me by now. My mum once told me 'Laugh and the world laughs with you, cry and you cry alone'. I've found this to be a very true saying.

You gave me determination yesterday, and today I am going to find the will to smile.

Thank you

[janiceray]

I would take up the offer from Paul and also have the c/d i have seen this and its good to watch and will help your family understand,and if you can become a member of Lupus U/k you get a lot of information from the Lupus New & Views and also a new letters from your nearest area which you can join in with,if you want.Anyway enough of that ,It took me over a year to get my head around Lupus and a bit longer to learn to pace myself.I learnt as much as i could(U/K sites only)there is a lot of help out there so your not alone as us early Lupies were.I endorse what Jude has said ,you will get there and we are all here to help you do that.

Love & Sunshine

xx

[moontreegoddess in reply to janiceray]

Hello janiceray

Thanks for your reply, I am finding the Lupus uk site invaluable at the moment, I am on here daily. I am glad that there is light at the end of the tunnel, my partner keeps telling me to stop looking it up but Ive explained to him I want to learn about it and do anything I can to help myself. I think it will take time for my family to really understand what this is and what Im dealing with, I guess they just want things to be the way they were just as much as I do. I will have a look on the Lupus New & Views and look into anything from my area. Thanks for the suggestions, they are much appreciated

[Jaxqueline]

Hi

I would just like to say that I completely understand how you are feeling. As others have said, get as much info as you can and look after yourself, try to get those around you to have some understanding of what is going on with you and hopefully they will help. My partner is a Chemist so he is very interested in the drug side of things but struggles to understand why I have difficulty some days doing things. I have been on Hydroxychloroquine for a while now and it definitely made a difference. I too have Vit D supplements but it was also found that I was calcium deficient which apparently helps you absorb Vit D so that may be worth thinking about.

Anyway, take care and try and be positive. Jxx

[moontreegoddess in reply to Jaxqueline]

Hey Jaxqueline

The thing I am struggling with is that I am a bit of a tree hugger (well a lot of one lol) and I like to do things the natural way. I feel that pumping myself full of chemicals wont help me, in as mucfh as they seem to cause as many problems as they're there to fix. When I was run down in the past I'd alter my diet and take vitamins and aloe vera, I've made my own creams for my skin using shea butter and other natural ingredients. So Im mainly worried that the tablets will harm me in some way but at the same time I am desperate to not ache anymore, its like having the flu all the time, without the snotty nose .

I will definatly ask about the calcium deficency, that makes perfect sence to me and fingers crossed the Hydroxychloroquine helps. Im on day 3 and I feel like poo, not sure if its cos Im down and scared or if its real, only 6 months to wait and see if it works, seems like foreve away.

Thanks for your support

[Jaxqueline]

Once again, I completely get what you are saying. I actually feel like going "cold turkey" and coming off everything to see how it goes. However, before Hydroxychloroquine I had difficulty moving, but then again I was advised just to rest which in my opinion (for me only) is the worst idea. The more I mobilise my joints in a sensible way the better I am. I have now been given anti-depressants and sleeping pills - both of which I don't want to take, I am also reluctant with pain killers. When I am able I find the best thing is to walk on the common in the fresh air with my dog/family, drugs can't beat that if you are up to it. However, sometimes walking to the bathroom is like trekkiing up Kilimanjaro.

Anyway, things have become better for me, just take time for yourself and listen to your body which it sounds like you are doing. My skin is okay apart from Psoriasis which has been ongoing since a teenager but re-emerged when I took Mepacrine. 10 years without it was a blessing. Vitamins are weird things, you can take one for deficiency but you need others to bolster it so worth looking into.

Keep in touch and we will swap tips.

Jax.

[moontreegoddess]

And I agree with you, if I rest too much I get stuck in a rut and it can make me feel worse but sometimes my body just says 'nope, your not doing that today'. I also find I will muster up the energy to do the fun stuff with my family no matter how much I hurt and save the house work for my family to help me with. A good walk in nature always lifts my spirits and in turn that helps to make me feel better physically. I've survived depression for many years and have a good handle on it now, I don't take anything for it now. I let myself feel sorry for myself now n then cos if I don't no one else will, then when I've had a good wallow for a day or two, I find I can give myself that kick up the bum I need lol. I found reading uplifting self help books an absolute life saver. Deepak choppra was my favourite.

Will defiantly keep in touch

Casey x x

[SammJ6 in reply to moontreegoddess]

I have just read all the replies and I am where you are moontreegoddess, I have recently been told that I have lupus and I have been very scared and even had panic attacks thinking about my family and how I want to be "normal". I feel like I moan to my wonderful husband all the time, hen is good and very supportive and tell me to rest when my body hurts.

I have young teenage children who are great aswell, but as you mentined in one of your posts, i find being active and going for dog walks over the forest helps me. I have to really push myself to do these things and put a smile on but I dont want to miss out on anything to do with my family.

I havent yet been given any medication as I am waiting results on other blood test, I take my Vitamin D supplements and fish oils.

This site has really helped me, sometimes I get scared and dont want to read anything, i think it is I get more annoyed with myself as I dont want this , like everyone else on here and then most of the time it is like have a councelling session.

Good luck and I will watch out for your posts and we can all help one another. x

[helen3d]

i was diagnosed in sep lat year so im pretty new to this aswell but i know exactly how your feeling and its not good i felt scared, alone,confused and many others, i think alot of it is tell people how you feel i have never been good at that but it does help especialy if you dont look ill as many people with lupus dont .. i found it quite hard telling people as most dont have a clue what lupus is even doctors or staff at A&E didnt have a clue what it was suppose im trying to say hang in there you will come to terms with it eventually im also on the hydrox pills but they do take a while to get into your system you will win this battle hun it will just take a while to get used to it someone once said to me if you cant face it (hoovering housework whatever) dont do it will be there tomorrow or the next day or get someone else to do it

take care

positive thoughts

helen xx

[ChrissyB]

Hi Casey

I was diagonised in October 2010 and believe me I felt like the world had fallen apart. I have one daugter who at the time had just turned seven and all I could think about was I going to be able to bring this little girl up and give her and my husband what they needed. I had always been active and held down a full time job, but just felt that I couldn't do this along with looking after and enjoying my family. At the time my contract came to an end and I decided to take some time out and focus on the things that didn't put myself and my body under to much pressure. I was the lucky one, we could just about manage on my husbands money, it was tight but we managed. I was started on hydroxicloriquine in November 2010 and believe me I did not feel any benefits until June 2011 but it is working really well. Like you I have just be diagnosed with Vit D deficiency, low white cell count and my iron levels are down to 9 at the moment, but I am being treated with the same vit D as you and I am starting to feel the benefits. Low iron has always been a bit of a problem for me, so I am not linking this to the Lupus. I have just been to clinic and things are starting to improve (bloods are looking much improved). I always feel that you have to cling onto any positive appointments at the hospital. I have now been able to return to work (only 22.5 hours per week) but I really enjoy it, getting dressed up and putting on a bit of lippy does me the world of good. My husband is extremely supportive and is a massive help at home, I thank my lucky stars for my husband, daughter and family every day. All I can say is listen to your body in the early stages of this disease and take each day as it comes, but enjoy all the nice little things that come from your children and family. Just remember you can feel really bad one day but the next day you can wake up and feel fine, so wait until the morning until you write of the day ahead. Keep well. Chrissy xx

[moontreegoddess]

Hi chrissy

Last week was terrible for me maybe cos I'd just stared the hydroxy tablets on the Monday but I remembered what you said about sticking with them and days going from bad to good over night. Your right and I find if I just try in the morning to get dressed and not sit with the baby in my pjs then I feel brighter. And if put a bit more effort in and go out with a bit of make up on it makes the world of difference. I'm just trying to figure out my limits and it's very frustrating as I live being a house wife having everything running like clock work and my partners tea ready each night. He keeps telling to stop and take it easy and not to worry when I can't do it but I feel like I've failed sometimes. I'll get there I know I will.

Take care x

[poopah]

Hi everyone, i relate to everything you all have said on this page as i am new to this too. i also think i have had it for years and whilst i think its mild i also have nephrotic syndrome which has led to me being put on a course of steroids and mmf. I was terrified after diagnosis and have found this site so useful as everyone is so supportive and informative. My mood changes hourly and i can be bright and positive then in tears and scared i wont be around for my kids either. My advice at the moment is to research it if it helps you as i really couldnt work out why my renal doctor gave me so many pills to take with some unwanted side effects but after researching i understand they will help and i just need to give them time.I have also started to keep a diary of food, stress, weather, pains etc to see what can trigger a good day or bad day. I really hope you all get the help you need and big hugs to everyone who needs one

Take care x