Hello everyone
Just thought I would update you on getting my replacement driving licence and it's good news!.
It's been approved and is on its way, no assessment needed!. It's been seven months waiting for a decision, shows how far behind they are in the medical department!. I am so pleased and relieved.
Hope your all as well as possible. X
misty14,
Congratulations I can really empathise with you on this. I retook my driving test exactly a year ago and passed with flying colours, I was really chuffed. I found it all very stressful.
I was waiting a year for them to reply to me and then got 3 weeks notice of the test, which isn’t long to practice but I got an excellent local driving instructor to give me a few lessons. Licence has to be reviewed again next year, what a palava!
Love the photo 😀
Hi mew, well done to you for re- taking your driving test!. What a big stress but you did the right thing having lessons and it paid off!. Being independent means so much to us doesn't it?. I'm sorry you've got to go thru it again in a year!. Is it because you have epilepsy?. Seems very strict otherwise.
Glad you like the photo, they're getting ready for hibernation!. Will miss them. X
Misty,
All paid off with 5 lessons. DVLA are very strict, I was bedridden when I declared my condition Myositis with Scleroderma overlap and as not on their known list they investigate. They passed information on to their medical team, they need to make sure that you are safe on the roads and not likely to cause an accident. I don’t drive very much, but it keeps my independence. I’ll have to check with my GP as to what happens next year, they may just write to him for health update.
You can be fined £1000 if you do not declare certain medical conditions, but DVLA are still snowed under still I believe.
Hi mew
Gosh I have been fortunate as they passed info onto medical team for me which is what I was worried about!. I first started this in Feb and when I phoned them a couple of months ago they said how behind they were because of staff and doctor shortages!.
I would have thought you wouldn't have to go thru another assessment just an appraisal from your GP next year.
I hope your doing as well as possible with two difficult conditions. I don't drive far either but it's so important to have independence!. X
Hi Misty,
I was told originally when I rang DVLA initially that I could still drive legally while they processed the information I provided. My GP is great and kept me informed when he was asked for details about me.
Independence is so important, I was amazed that it took a year for them to respond. My licence was changed and stipulates that I can only drive an automatic car, fortunately I have been driving an automatic for about 20 years. I had to take the test in my own car.
Hope the ferry journey for your son’s return goes OK.
Hi mew. So pleased you could also drive while waiting. My GP was the same as yours keeping me informed as to what he said. He's going to get a big thank you on Tuesday when I see him. My licence came in today's post and I can't stop looking at it!. It's clareb's son whose travelling from Belguim. Have you got windy, stormy weather this aft?. Happy driving. X
Hi Misty,
Great to keep looking at licence, cos it means such a lot.
Good we have good GPs, he is also on a committee for DVLA so he understands exactly how the system works, he was very reassuring and helped me loads and still does.
Storms are getting up here, very windy that storm Brian!
Hi Misty
I'm so so pleased for you. I hadn't realised that you had needed approval - presumably on health grounds? Being able to drive is a virtual necessity for most people these days - no wonder you're relieved!
Have a great weekend - it's pretty blowy out there ATM. My son is returning from Belgium today, not great weather for ferry crossings!!!
Xxx
Hi Clareb
Thanks for your lovely reply. I lost my licence and had to tell them my car is adapted and they wanted health info as you can imagine, asked my GP and it's taken so long for a decision. Luckily I could drive in the meantime. Ironically it will come and I can't do a drive at the mo to celebrate as not well enough.
Safe passage home for your son, such a worry for you. How blowy are you?. Wind here pretty strong , rain easing,!. How's your leg?. I do hope it's improving. X
I didn’t realise you’d already lost your licence, it’s the final insult of this horrible condition isn’t it?
My leg has been hugely problematic. I keep getting halfway through a post then not finishing it. I got full on severe cellulitis and was very ill. I saw my rheumy at my scheduled appt who admitted me there and then through A&E for IV antibiotics. I was due to leave for Paris in a few days time and he didn’t want me to travel but, despite it all being a bit nail biting, things are improving and I did manage to hobble around Paris! It’s still a wound that is leaking filth 24/7 so not fully resolved yet. My GP wants to keep a close eye so I’m back there again on Monday. Thanks for asking - it’s been nearly 4 months since that innocuous little red lump on my shin. Oh, and I’m off myco indefinitely 🙁.
Oh Clareb
I'm so sorry you have been so I'll with severe cellulitis!. What an experience but glad you managed to hobble in Paris. Not what you wanted but good for you for trying!. Good luck on Monday with your GP. I know from a cousin what a long, difficult recovery cellulitis can be!. Feel for you and how are they going to treat the UCTD as your off Myco now forever?. I hat to come off it seven years ago and just take steroids now which I don't like for side effects but what can we do?. Between a rock and a hard place all the time!.
I misplaced my licence and applied for a new one and had to declare my adaptation which led them to asking medical questions!.
Take care, fingers crossed for Monday. X
Misty, did you come off immunosuppression because of side effects? It hadn't occurred to me until yesterday that my rheumy might be withdrawing the Mycophenolate permanently but now I'm wondering . . His words were 'You need to stay off the Mycophenolate' and I felt too ill to care about anything other than lying down! My GP won't know so I'll ask my rheumy nurse when the infection is still settled after I come off the antibiotics. I think I'm already starting to flare - swollen salivary glands and dizziness for the past week or so.
My son made it safely back last night! He must have a very strong stomach to have withstood the waves out in the channel!
I just read that you've broken your foot- I know someone else that the same thing happened to and there was of course the risk of the other foot breaking as it did more of the work. How often do you have bone scans? Mine was good last time (age 40 ish) but I'm 50 now so I probably need another.
I hope your foot soon mends xxx
Hi Clareb
So pleased your son made it home safely last night!. Hope he'd had a good time. Yes I did have to come off Myco because of side effects. It might be that your Rheumy only meant it to be whilst your on antibiotics as there's query about infection. It certainly does need clarifying so Rheumy nurse will be able to find out for you. You may also be flaring because of the infection not just missing Myco!. So sorry that you are!. Thanks for asking about my foot. It's healed beautifully now and I've had good advice from podiatry to help prevent it happening again hopefully. I'd got high arches which as he said puts extra strain on foot in many places so I've got insoles and the' E helped the foot pain I'd been getting before the break!. Not just steroid worry and luckily Dexa scan is due in 18 months. I take bone strengthening drugs and have gone over into osteoporosis mildly which upset me. I've had scans every five years so I guess you could do with another as your 50. I'm 45 isn't it all worry for us if we let it. All the best for this week. X
Hi Clareb
Thank you so much for such a lovely reply. My licence has come in today's post and I can't stop looking at it!. It means so much to me. I had to declare the adaptation I've got on it and this led to lots of more detailed health questions which you can't blame them for as we are in charge of a lethal machine!. It's just taken so long for a result . They've always known about my arthritis from when I passed my test!. Do Hope your son gets home ok. It's really rough here in Devon. I should think the ferry will be delayed. Fingers crossed for you and for Monday. X
So pleased for you Misty! Fantastic news! I couldn't cope without my car so for you to be without your license for so long must have been so frustrating and caused you a lot of inconvenience. Happy motoring once again. 🚗 xx
Hi Wendy
Thanks for your lovely reply. Luckily I still could drive as GP said I was safe to. I' wouldn't have been this patient for a result if not. !. Our cars are so important!. I was worried I'd have to go for an assessment as its been adapted!. Hope you survived the flu jab ok!.. X
Excellent news! x
I love those little hedgehogs, and wish I could get more than one in my garden. I'd rather have no foxes though. I've plugged every gap and paid for a new fence but they find their way through. The last I saw had mange very badly. Apart from the anxiety that my dog can contract mange from them, I can get him to a vet, these poor beggars will die horribly.
Hoping the RSPCA can come to the rescue.
HEDGIES!!!!!!!!!!!!!!!!
Mine seem to have disappeared. I think they start having periods of torpor about now, in preparation for the big sleep over the winter proper. But I am still putting out food and am waiting for a quiet night to get some shots from the camera trap to see who is eating it!
Oh, and good news on the driving too! 
x
Hi Whisperit
Thanks for great reply. Shame your hedgewig has disappeared!. We just keep adding to the numbers visiting and they're definitely feeding for winter!. Eating us out of house and home but we love watching them. Hopefully yours will return as your still putting food out. They do travel long distances and might get fed up with new eaterie and come back to yours. Fingers crossed. How's your mum doing?. Recovering from op I hope and how are you with your steroid dose?. X
Yes, I'm a bit concerned that they should still be up and about - its not really cold yet, is it? (On a side note, it is a sad reflection that this is literally the most exciting thing happening in my life these days)
Otherwise, my steroid dose is static atm, pending further investigations, and Mum is back home at last, slowly recovering. Thanks x
Hi Whisperit
It is still a wee bit early for them to hibernate specially with mild weather still. I reckon ours will go when it goes colder. Mind you won't be far as we've a house at bottom of garden that they're occupying!. Good luck with your investigations, hope they help you improve your quality of life. Glad your mum is home recovering. Is she near you?. Hope your not being battered by storm Brian as we are tonight. keep us posted. X
Thats great news about your license , Id be lost without my car 🚗. I hope you will be feeling better soon, it must give you a wee lift being able to watch your little visitors , they are adorable. Best wishes xxx
Hi weathervane
Thanks for lovely reply. Yes love watching the hedgies, will miss them when they hibernate soon. I hope you haven't had anymore bats and how are you after those injections. ?. Hope gave you good amount of relief. It's a big boost to get my licence even though I'm not well enough at mo to do a celebratory drive!. I was worried I was going to be sent for an assessment. Having independence is so important for us isn't it but I was lucky I could still drive while awaiting the decision!. X
Thanks misty, the injections have really helped , back feels alot better . Now white cell count and neurophils have become really low and have to stop plaquenil , my muscles are aching all over today after a week and I don’t know if that the cause. I think i need some hedgehog therapy as my bat has disappeared xxx
Hi weathervane
There's always something with us to have to cope with. Sorry you've got to stop Placquenil and are suffering but glad injections worked. Maybe you'll be able to go back on it after a break or maybe it's the infusion that's caused it not that drug. Have you talked to your GP about it?. Feel for you as it can be hard coping sometimes. I'll send one of my hedgies to you!. X
Gp has been on top of it , getting blood checked again next week and if ok I think i can start plaquenil again. My white cell count was low before I started treatment which didn’t help !
Oh that's good weathervane, fingers crossed your bloods are ok and you go back on it. I'm getting blood results on Tuesday that might explain my newish symptoms. Fingers tightly crossed for us both. Let me know how you get on. X
Good luck with blood results 🤞🏻🤞🏻
Thank you weathervane. X
Hooray! That’s great news, Misty! Congrats and well done👍 It’s a lifeline being able to drive yourself places independently and so vital for self esteem. Vroom vroom xx
Hi tess
Thank you for lovely reply. I keep looking at my licence as I don't want to let it out of my sight!. Expensive misplacement!. How are you?. Week to go for your second opinion. Any biopsy results yet?. Fingers crossed it all goes well for you. Vroom, vroom is so important to us!. X
Thanks Misty😀I hope driving again gives you a real boost! Blast your favourite music, roll down the window and enjoy the freedom🚙 No biopsy results yet, might be as long as another fortnight. The wait is hard to take mentally as it feels like I’m back in that endless no-man’s-land of wondering what’s wrong with my body and questioning my own perception of pain, discomfort and normality. Makes you feel like you’re going a bit mad lol! Thanks so much for the kind words and moral support xx 🚘🚙
Hi tess
Thank you for your lovely reply. I can't wait to have a celebratory drive but awaiting blood results tomorrow as not well at the mo. It's really tough awaiting results especially when a longer time like for you and I totally agree about going stir crazy trying to second guess or figure out what's wrong!. Been doing that yesterday!. I think mine were quicker than that although I only had the one test, colonoscopy. Fingers tightly crossed for you. Vroom. 🚗🏎x
Thanks Misty! I do hope your blood tests come back ok 🤞and that you feel better soon. Let us know, won’t you? I also hope you’re well enough to get behind the wheel and enjoy the feeling of freedom that brings. It’s a new day, a new week and all good things possible ☀️🚘xx
Hi tess
Thank you for your lovely reply. My bloods were great apart from low potassium and if you've seen my post to GE you'll know I had the conversation with him about no inflammation showing so no steroid need etc that I'm sure your familiar with. He just said eat more bamanas about the potassium and I don't know how low it is!. Any way I research it and it covers all my symptoms as I've had it before so back on Friday I go to GP!. It's all such an effort when we don't feel well. Hope you get news soon. X
Hi Misty
So glad your blood results were good, that's great news! I don't know much about low potassium but I think it's fairly straightforward to correct.....melon might be another source? Are you pleased or annoyed about the "no inflammation markers/no steroids" conversation? My GP used to give me a steroid injection whenever I was having a flare, regardless of bloods, but last time I asked, they said no raised markers/no jab. Maybe it's some new system...? If it is, I don't like it because my inflamm. markers are never raised, yet the steroid injections help me so much, they're a wonder cure. I hope you're not feeling too poorly tonight, I seem to go downhill as the day goes on, do you get that? Take care and hope you feel really well soon! x
Hi Tess
Thank you for your great reply. Yes , it could be a new way to save money, no raised markers no jab !. Really tough for us when they work so well. Bloods were taken when I'd been on the extra dose of steroid three days so was better. My GP is very supportive and he'd been saying it in a much better way till he spoilt it and I was annoyed because there was the inference of you just like the steroid high which makes you feel better when no clinical need present!.I wish I did have the high but never have as do battle with chronic fatigue!. I feel better when flare symptoms are abated!. I'm going to explain this. I wish it wasn't my word against there's!. Rheumy says the same!. I've been eating more potassium rich foods as have a list from hospital. You can have supplements as extra so as you rightly say it's easily put right!. I did feel slightly better yesterday but wonder if that's auto - suggestion!. It's wonderful though chatting to you guys on here who have same problems!. Keeps me sane!. Not long now for your second opinion. Do hope it's helpful. Let me know how it goes. X
Thanks so much Misty! I wonder if I could ask you a couple questions about things you mentioned....do you know if medication like steroids or hydroxy can improve a patient's blood results (in addition to symptoms)? Since I've been on the hydroxy, my platelets have normalised (were low for over 10 years) and my ANA (only ever borderline) is normal as well. Neither rheumy/GP have commented or suggested this. Have you seen a link yourself or read anything about this? Also, you mentioned a steroid "high"....is this a well-known phenomenon? Like you, I always feel loads better after an injection but never felt a "high", just big improvement in symptoms..?! Any info, much appreciated! Thanks for chatting, Misty, nice to connect with others going through the same thing. Keep smiling, keep well, keep strong! x
Hi tess
Sorry to take a while to reply but I've given your questions a lot of thought and done some research!. My ANA over the years has gone from positive twice and then been negative because of being on treatment. Unlike you I never knew what level it was or what pattern. I think it's quite commonfor it to do this. I've looked up Hydroxy in my copy of a fab book by Triona Holden and graham Hughes called 'Talking of lupus'. I recommend it highly as easy to understand. It says that Hydroxy is a immunomodulatory drug that is very effective for sun sensitive patients, is an anti viral. Reduces fatigue and is a good anti inflammatory easing joint and muscle pain!. My point being I guess is if it successfully helps with the disease process then it could modify immune responsehence AnA changes but I'm no medical expert so I'm hoping someone who is on here will give their knowledge. Same applies to steroids. Twitchy has also been talking about how steroids can skew blood readings!. You might like to messageher and ask. She has years of experience of these illnesses and consultants. I've looked at my prednisolone patient leaflet and it does state that in some people they can cause mental illness. They say tell GP immediately if you feel 'high'( mania they call it) with moods that go up or down. I do know some people on here who've said they're steroid dose can't go up to a certain amount because they will be affected in this way!. I've been fortunate that doses of 25-30 mg which I've been on occasionally for a short time haven't affected me in this way. Thanks to you I understand better what it means and will know how to answer the doctors. Good that we haven't felt this!. I saw my GP and my potassium level is in a grey low area. Trust me , not enough for a supplement so I must keep up the right foods. Good excuse for more roasties and chips!. Lucky me ha!. He's going to re- test me in two months to see how it is. I do feel much better for the extra and am planning my celebratory drive !. Sorry for such long post but I do hope it's helped you. Ask away I don't mind, glad to help. Enjoy the weekendand good luck for results. X
Hi Misty
Thank you for such great info! Funnily enough, I'm actually reading "Talking about lupus" at the minute from the library lol! It's a great little book, as you say...easy to read and understand and very much written for the patient. My private rheumy (hopefully 2nd opinion) appt is tomorrow and I'm hoping to ask about the question of medications affecting blood test results. I'm sure you're right in what you said above, but I'll let you know the answer/outcome as well. For the appt, I've printed a few lovely pics of my rashes etc (ewww) and been working on a loose timeline to bring to the appt (thanks to suggestions on here). It can be so nerve racking sitting in the consulting room, trying to remember what happened when!
I'm glad you have the potassium thing under control. Sometimes it's nice to have an excuse to add in foods we don't normally eat, but I hope you're not getting too sick of bananas! Keep up the good work and thank you so much for all the info! x
Good luck tomorrow Tess, I'm sure you will do well. It is nerveracking though, like a horrid job interview with more implications!.Funny you were reading the lupus book. You can buy it from Lupus UK if you want your own copy. I often refer to it. I would be very interested in what they say re bloods so await your outcome with interest and let me know in your own time. No Rush!.Take carex
Thank you ,Misty, will do! x
Sorry coming to this party so late - I somehow missed seeing this post Misty. So delighted that you’ve got your licence replacement - well done you!!
Loving the hedgehogs!!
Fantastic news Misty! Sorry for the late response as well . Hope your in a good place at the moment. xo 🚙🙋🏻
