First the good news: I had my Blue Badge assessment today and the very nice lady told me there and then that I more than qualify and my badge should be with me in around 7-10 days. She also said that I should qualify for the DLA higher rate. I applied for this 2 weeks ago, and I had a letter on Saturday saying that they were writing to my consultants. Hopefully this wont take too long for the decision.
Now the bad: I got home from work today to find a letter from my rheumy consultant. The recent blood tests have shoen that I also now have Pernicious Anaema and Folate Deficiency. I am to have B12 injections and she also wants me to have a full Coeliac test. My thyroid levels are very low, and if my next bloods come back as the same (I have them 4 weekly) then I will also have to take thyroxine.
On the one hand I am happy to be being believed and getting my blue badge, and on the other I am sad as it means I have joined the realms of being disabled. I turned 40 in October last year and I feel like my life has plummeted. Now i have additional worries about the new problems. I have an appointment tomorrow (Tuesday) with my orthopeadic consultant regarding my poor feet and the last time I saw him, he mentioned that I would have to have surgery if things didn't improve - well they haven't improved and my right foot has decided to join the party.
My mind is in a complete muddle, and I am getting more and more exhausted by the day. My 9 year-old twins were doing my cleaning at the weekend as I just can't do it and my hubby and 18 & 19 year old sons just ignore my requests to help me. I've given them all my file that I keep all my hospital visits, letters etc in and told them to read it. I am hoping that they wake up and realise that this is all genuine and that I am no longer the same as I was and need them to do things for me. It's hard enough getting your own mind set to make adjustments and to accept the life changes - why can't they see it?
I'm off to bed in a minute as i'm so tired but I wanted to get this blog posted and see if anyone else had similar problems/results.
Sorry to hear life so hard for you at the moment, the only thing is that when you get the anaemia & B12 def sorted you will feel much better. I also have under active thyroid for years, and medication eltroxin will correct it and your tiredness will improve.
You will get through this and improve, teenagers are not great at helping its just the way they are, go easy on yourself, and don't expect to keep such an orderly house for a while, priortise tasks and take breaks. The only way I got my teens to do household tasks, was with financial reward, otherwise, don't bother you are only seen as nagging, you will find they are worried and concerned, just life is all about them and their pals right now, and you are just the mom, who really knows nothing. Sorry, but in a few years they will be great.
The blue badge makes such a huge difference to us RA sufferers, no matter what level you are at, I only got mine a couple of months ago, and it is the best thing ever, I dilly dallied about applying for mine, because I look fine and just have a bit of a limp, but crikey do I suffer and if it was'nt for make up I would scare people including myself!.
i hope things improve when you get your thyroid sorted. I am 50 and my youngest was 17 when I was diagnosed, it must be very hard with 9 year old twins, but lovely that you have them
"In a few years teenagers will be great"? I want to live on your planet Gina, as just had the girls (27 and 29) for easter and they were worse than the 5 year old grandchild! And at that age I can't afford a financial reward that's big enough to motivate them! And as for OH's.....adorable tho' mine may be he still doesn't quite get it, although will now remember to open jars for me without being asked so some progress! I'm afraid that re-training an OH does take a long time.
But, Angie, I'm sorry to hear that you have more health problems to deal with, although it's good that these things have been picked up. But at least has your burping sorted itself out now you've been on the omeprazole for a bit? And it's hard to come to terms with all this, but at the heart of it you're the same you - just a bit creaky. So go use your blue badge to do something nice!
Polly
Hi Angie - I just came to your blog as my two teenage sons age 15 and nearly 17 (got a 20 year old son too) were creating havoc in one son's room and it's 10.45pm - guitars being strummed, shouting, clothes and wet towels strewn everywhere and bathroom occupied on and off as they preen themselves and srutt about.
I've just roared at them and got laughed at so roared some more. Their dad's on a nightshift so me and the dog are the only ones who can attempt to move them towards bedtime. Exams are on for the 15 year old and the almost 17 year old has big exams coming up too. They don't know that I'm feeling at breaking point with all this RA - they just haven't a clue! But I know from the 20 year old now at uni that things improve as Gina says.
Hang in there and enjoy your blue badge and your 9 year olds - in life you win some and you lose some and you've just had both happen so it's hard. I've got an under active thyroid and take thyroxin - have done for years and never give it a second thought. But if I forget I really feel the difference so things can only get better now for you I feel sure. TTx
Thanks Gina, Polly and Tilda.
I also have a 21 year old son who lives in Australia and I've asked him to have a word with his siblings. I think it works better coming from another sibling as I'm just seen to moan and nag. I told them all yesterday that I've been accepted for my badge and they mocked me - I can handle that but if they know why don't they adjust to help more? My twin girls can - its probably because they are female and better tuned in. I hesitated for ages to apply for the badge as it makes things so final. I work to keep me sane and live a life. If I didn't work I wouldn't be what I am today and my employers are really good - but then they should be as a leading old age charity (Age UK). My job isn't physically demanding; I just have to use my memory banks and when I'm tired I really struggle. Last week OH did a lovely roast beef - meat was a bit chewy and I couldn't cut it as my hands are bad; my son did help to cut up my food. It's a role reversal thing; you feed them as babies, now they help me with mine. The burping thing isn't quite as bad now im on the omeprazole but as my tummy isn't happy most of the time then maybe the coeliac diagnosis will make sense.
Tilda, the wet towel and pruning thing drives me nuts. I refuse to sort their bedrooms out now as it irriates me so much that they have no respect for the house. I don't even iron their clothes as they just dump it in a pile on the floor and after a week of it being kicked about then they might just put it away. My 19 year old works and pays his housekeep to my OH (OH is unemployed and does the food shopping and some housework). My 18 year old works part time as a chef and is still at college. I'm not giving them financial reward as they are earning themselves.
When the badge arrives, I'm going to have a drive to Bluewater Shopping Centre (about half an hour drive) and proudly park at the front. I need to use a wheelchair so I will borrow one from work. I haven't been there for so long as it is impossible for me to walk around it. I had a bad nights sleep worrying but woke up this morning with the conclusion that I have to adjust my mentality and not let the evil depression get a hold of me again and to start living the life I haven't had for so long. I can prove that I am not making my symptoms up and that if I can accept the life changes, then so will every one else have to.
So good for you,I had my thyroid. Removed 2 years ago and am fine but have oa in knees and may have ra in hands and have depression. Which I,am getting counseling for enjoy your badge with pride,I,am just about to apply for DLA for the 3rd time!!!!
Morning angie, you are having a hard time of it aren't you. You can never win as a mother. I wish there was something i can say that would help you,all i can do is send you my love and prayers.
Angie, this is so frustrating and painful. Is there any way you can give them specific jobs for which they're responsible? Having said that my daughter who is in her 40s has only just started to help with the washing up when she comes round. Bossed me away from the washing up machine...
She's been through a dreadful time and has more compassion now.
Xxx
Hi, I had teenagers who were strange. They got to about 20 and started to return to humanity, slowly.
I used questions like... Would you like to wash up or would you like to put the rubbish out. And I always only accepted an answer that couldn't just be "no!"
And I gave helpful comments like ... I have done all my washing now, so the machine is available for you to use...
And I always overdid the praise. And used absolutely no criticism. A bit like animal training,... reward all good behaviour with a pat or a smile or a kind word! I wore them down in the end!
Anyway, what I wanted to say was:
My daughter has had B12 deficiency since she was about 22. The Pernicious Anaemia Society (PAS) website is very helpful and reassuring. Worth a read as some GPs are about as up-to-speed with PA as they are with RA.
I too hesitated to apply for a Blue Badge but a wise rheumy nurse pointed out to me that I should change the label and consider it an "Enabled" Blue Badge as it would enable me to go places which I otherwise wouldn't go anymore because of the long walk from the car park. It's been invaluable for parking near the drs, hospital and chemist when really poorly and has enabled me to manage going to the shopping centre by myself
I've been ill since my children were small so they were used to us having to all pull together, well before they reached their teens. My main advice would be that if you're not well enough to do it - don't! The twins are the only ones young enough to need things done for them and if your OH isn't working he surely can shoulder this weight. The older lads should be cooking, cleaning, shopping, washing and ironing for themselves by now surely? Women often look after everyone else and put themselves last. You're working, you're very poorly (I've had pernicious anaemia too) and you need to confine any energy left (? energy what's that???) to sitting reading/ drawing/ watching tv with your little girls and hearing about their day.
Have you tried giving your teens and OH the NRAS leaflets - ie 'What is RA?' - it's short and to the point!
I use my DLA to pay for help in the house.
Start looking after yourself and putting your needs on a par with the others,
Gentle hugs,
Cece x
Angie, just read your post. You got a load of good comments there - i agree with all that has been said regarding oblivious OH's and have to say my 11 year old is like the lazy selfish stroppy teenager. My 7 year old though is very helpful. I ended up getting a cleaner only 3 hours a week (all i could afford) but she is great and does all the heavy stuff so i don't have to beg for someone else to do it and then feel guilty.
Good for you re blue badge, I am going to do the same. Like you i have looked at it as a last resort but after getting a parking fine cos i couldn't get to the parking metre i thought to hell with this and am just going to download the form and put it in.
Hope you are feeling better today and when all the medicines start to kick in life should start to feel better.
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Blue badge?
Email from work colleague with RA is going to be used in my hearing!
Active disease but no treatment as I don't qualify for biologics. Have to wait for damage!
Blue Badge
Good news!
