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Discussion Starter · #1 ·
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.
 

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Discussion Starter · #8 ·
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
 

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Discussion Starter · #11 ·
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
 

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Discussion Starter · #13 ·
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
 
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