[Lillypad]

Hi everyone,

I've wanted to post on this site for ages now, but my nerves kept failing me! I didn't think anyone would be interested in me, but I now realise what lovely supportive, kind people you are and I could do with one of those 'virtual hugs' too! I've had Lupus now for almost 6 years and apart from suffering really badly initially, I've had a few flares over the years. It is always awful in the sunlight when I get the most terrible red, itchy rash and look like a freak having to cover up, I have to cover myself in suncream even in Winter. I have a bad allergy to nickel as well. This February I am having the biggest flare ever! My mouth was covered in ulcers which was a warning to me what was about to happen! My muscles are currently aching like crazy, even my toes! I could sleep forever, yet can't at night as I'm in so much pain. I couldn't even hold a hairdryer the other morning. My poor hair has suffered over the years too and I have thin patches, some of which have grown back thankfully. My GP has put me back on Prednisolone and I am trying to wean myself off them gradually until my rheumotologist appointment on 26th March. They cause me to have stomach pain. I was on 30 mg daily, but when I got down to 10 mg daily, I couldn't walk down the stairs. I can manage the pain now on 20 mg daily, but I hate taking them. They aren't always too effective for me with the pain, but do stop the rash and hair loss. My GP is very supportive, but not sure he fully understands the disease.

I had recently been redeployed from my job to another totally unsuitable one which involved different hours and driving longer distances, more than coincidence that I had this flare, which I'm certain was triggered by the stress of it all. Had a bit of a job convincing my employers that the job was unsuitable, but finally am getting somewhere and they have offered me another post which is going to be better for me I think. I have had the past 5 weeks off work and have been feeling very sorry for myself. This site has helped me enormously, non-judgemental and people who really understand. Thank you and best wishes to you all.

 

[Joandublin]

Hi Lillypad

Welcome to the Forum. I moved your post to start a 'thread' of your own because I didnt want you to get lost in someone else's post.

Im delighted that you took the plunge and joined in. As you already know this is a great community full of warm, intelligent, wonderful people who are only too happy to support each other with this disease. You can take part as little or as often as you like - there are no pressures.

Im really sorry to hear about your current flare and your experience with pred:hugbetter: Can I ask what other medications you are on for disease control? Are you on Plaquenil? If the pred doesnt suit you then it might be necessary for your rheumatologist to add one of the steroid sparing drugs like Imuran for example.

Its good that your appointment is coming up next week and I hope you get a good response. Maybe you should ask your rheumy how you should cope in between appointments if things flare up. Its great that you have a supportive GP and perhaps you can help facilitate some communication between them? Sometimes we just have to push the boat out a bit to get the best possible care :hug:

I hope that your rheumy can help knock this flare on the head very soon. Make sure he knows how long you have been out of work because of it and how it is impacting on your life at the moment.

Lovely to meet you and I look forward to getting to know you. Best of luck next week

Luv n stuff
Joan:rose:

 

[LolaLola]

Hello Lillypad,
You see we are interested in you! Seriously the people here are great, and we wish you had come here sooner rather than struggle. I take my hat off to you for going to work. I am on Disability-I am fairly useless by normal standards!

Anyway, I am in the UK, The Isle of Wight. My Daughter also posts sometimes she has Lupus too.
x Lola

 

[Karly1964]

Hi LillyPad,
:welcome: :wavey: Glad to see that you have joined us, you will find everyone so supportive and caring, everyone's experience is important and people quickly become your friends. Take care, glad to have you here! karly

 

[macfamily53]

Welcome Lilypad



First of all i want to tell you i think your name lilypad is so cute and makes me think about spring . I am so sorry you are feeling so badly(((((hugs))))).I wish there was a way to get off that prednizone right now but sure how your rhueme does find something that helps you out when you see him.You are sure right about how wonderful and caring everyone in here is for sure.I would not of made it through everything in the last four years without them for sure.If you feel like it you can go into hcat also sometime and someone will ussualy come in and chat with you and help you to get through whatever it is you are going through and even make you laugh on a good day :wink2: .Please let us klnow how your appointment goes next week with your rhueme and how you are feeling also.I sure hope your new job works out for you also.

Tammy

 

[keebler]

Hi Lillypad,

Welcome to the group.

Sorry to hear that you are going threw a rough patch right now.:hug:
I am happy that you finally convince your employers about the job post.

Good luck at your rhumey app. on the 26th. Could you maybe ring him early and tell him how you are doing? Maybe you could move your app. up.
Take care and let us know how you are doing.

:hug:
Lyn

 

[Sage Hen]

Hi Lilypad,

A big welcome, to this site! I am sorry to read that your feeling bad. I do hope your Rheumy appt. will be a big help, in putting you on the road to recovery soon.

Keebler, is right. Often, when we are feeling really bad a phone call, to the drs. office is all we need to do, to get our appt, moved up in time. They, often have cancellations also, making it easier to get in sooner.

I hope you feel better very soon, and that you can see your Dr. sooner.

Best Wishes,
Sandy

 

[Lillypad]

Thank you!

Wow, I'm overwhelmed!!! When I switched on my computer this morning, it was like my birthday, seeing all those replies! Really has put a spring in my step. Thank you so much to you all for being so lovely and caring!

I chose Lillypad as my name as that is my daughter's dog's name, she is a gorgeous collie/ jack Russell Cross. My own dog, who gives me so much comfort is an elderly long haired miniature Dachshund called Heather. I have two wonderful grandons, Oliver and Josh and I can't tell you how much I love them. Josh is so funny, 5 years going on 30, such a great sense of humour. Oliver is only 8 weeks old and he gave me the most wonderful smile yesterday,I can't help thinking about that smile! I have a lovely family, two daughters and a son and a very hard working husband! So I do count my blessings daily.

Yes, I have been on Plaquenil before and it was useful and I suspect I will go back on it when I see the Rheumotologist, who knows, meanwhile I'll hang on as it's Easter this weekend in the UK and of course everything is shut down. I have a friend who is a homeopath and she gave me some treatment. Not too sure about that as these things always take so long to take effect, but you know what its like, you'll try anything for relief!

My sincere thanks and love to you all, this is indeed a great site! I will look forward to getting to know you all.

Frances

 

[helloos]

WElcome to the site.


Glad that you did post and sounds like you have a good doc too between the both of them.

I hate the steriods. All I can say. But they do work.

I just had a question: What the heck does that dog look like Jack Russell Cross? LOL

I say this because I have a Jack Russell and can't imagine a cross bread?

 

[JudifJ]

Hello Frances

Just wanted to add my welcome too! My rheumt appt is the 25th so we can compare notes!

Where in East Sussex are you? We've just moved to Hawkhurst and our house is only 200yds from the East Sussex border. I have my best friend in Rye (known her since school days and I'm now 49 :hehe: )

Hope you are doing a little better today.

Have a happy and blessed Easter.

Love Judi xx

 

[Lillypad]

Hi Judi,

I'm in Uckfield, East Sussex. I go to Princess Royal Hospital in Haywards Heath. I expect you go to one of the Kent Hospitals? A happy Easter to you too.
In reply to helloos, Lillypad has a jack russell face, but has longer legs and a big sweeping tail. Black and white. So much energy and loves to dig!

Frances

 

[Taree]

Hi Lilypad! Hope you feel better soon!

X T X

 

[Lillypad]

Hi Everyone,

Just returned from my Rheumatologist appointment. Day started badly, car wouldn't start and the battery was flat as a pancake. I had to ask my neighbours to jump start me, finally go to the hospital with minutes to spare, blood pressure sky high! My malar rash was scarlet in colour and my chest was and still is so red and inflamed.The doctor (who I had not seen before), had a student nurse with him and I felt he was talking to her and not to me about his findings! I'd just taken my Prednisolone, so the pain was under control, so when he tested my joints, apart from my arms, I was pretty much ok. I did say how the pain was so bad at night and how I had trouble walking down the stairs in the morning. However, he has reduced my Prednisolone to 15 mg daily for 10 days then onto 10mg daily. I've also got Plaquenil twice daily, Ibuprofen 400mg once at night, Adcal D3, once daily and in case all that uspets my stomach, I've also got Omeprazole! He has ordered a bone density scan and I will be having a Cortisone injection next week! So, maybe he was listening! Had my blood and urine tested again also. I also have an appointment to see my GP on Thursday.

Just to add to my great day, I had to get a new battery for the car and when I got home, my plumber was here and I was greeted with the news that I need a new boiler for the central heating. Staying positive! Laugh or cry?

Love to all.

Frances X

 

[cuteynblue72]

You have had a really bad day. I am very sorry to hear everything that you have dealt with today. I would be in a corner somewhere balling my eyes out. I am glad that you finally got a positive diagnoses but from the sound of it you have been dealing with this disease for a period of time now. I am glad to hear that you have got the car problems taken care of. I hope your day will improve you will be in my prayers and you take care of yourself. Laurie:wink2:

 

[JudifJ]

:flowery: Oh, Frances, what a day! I would be beside myself in incredulity. At least I managed to get to and from the rheumy yesterday without incident (well, if you count forgetting to mention half my symptoms and my list as not incidents :lol: ).

Hope your GP appt tomorrow goes to plan: I will be thinking of you!!!

Love Judi xx