This is produced by the LAM action in Nottingham. You will have an idea of this rare lung disease which only affects women and usually at child-bearing age.
I thought it would answer some of the questions asked in a professional manner.
I consider myself lucky to have reached my age with just a few inhalers, healthy eating, physio Pulmonary Rehabilitation or physical exercise.
Aria is wondering where her Mum is and has been howling like a baby wolf! On the table watching the May and Macron show on 📺 and wondering if she will get to see the Bayeux Tapesty xx
Good morning my friend xx thanx for spreading the word on our terrible illness you amaze me with everything you manage to fit into your day's... glad your health is relatively good on the lam front xxx keep well oh and nice pic of the lovely Aria xxxx
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Thank you Lam Sis 💕 Hope today is a better day xxx
How annoying, i just wrote you a long reply, Fran, and it's gone. Thank you for posting this info about your condition. I hadn't realised quite how rare it is, nor that it affects more than just the lungs (don't they all though?) Im so glad you manage so well with such a hard condition. Are you by any chance one of the lovely women in the pic at the end of the fact sheet? The centre one with dark hair and glasses looks a bit like Havi Karel, the Bristol woman I mentioned to you a while back but then I only met her once around 2013 so my memory may be inaccurate. You take care, Fran xx
Ah sorry I have the same problem, the app closes and the message disappears.
I am glad it is rare for all those women really..how strange that it touches us in our reproductive system in a way, our identity. So many women go to extremes to have children and others have to repress their oestrogen..
I was lucky to have Bea and years on progesterone have helped me to keep my condition stable I am sure despite what they said..but it is such an individual disease..
No I haven’t met any of those ladies as I got in touch with the group when I had already left England, they put me in touch with the LAM specialist in Switzerland. They have been so kind.
Not many people being involved not much research goes into it, well budgetwise, so we have Red nose day and charity events to help us with our cause. It does make me angry at times not for myself but for the generations to come..well Big pharma prefers big sales..
Thanks too for the photo of Aria.......such a smart cat with those white whiskers.
Howling like a wolf ....I had two Siamese cats and they certainly had loud voices and they even taught our shorthair how to speak Siamese which disconcerted the vet.
I can't have pets any more due to my daughters multiple allergies so I do enjoy seeing other people's animals and reading about their other interests on our HU/ BLF site.
Ahhh allergies are more of a problem than they used to be..I was on antihistamines for years and I had all those allergies tests done last year, 40 skin tests, 20 on each arms and I had nothing. They did 3 for cats and luckily I had nothing. When I attended Charing Cross I was always told oh you have a cat and you have asthma they are the worst culprit..so I wasn’t allergic to cats and I don’t even know if I have asthma really, it is more LAM dyspnea..
See how life works out, we had Tigs for 19 years and she was a treasure..
Thanks for the new pic of Aria, and yes I bet she’s missing Bea...some cats are so knowing. We used to have three when the children were at home, they were such good company, though very different personalities. Jez, my favourite, was a large white cat with one or two grey markings.. he used to climb up on to my bed each morning at ‘get up’ time, lie heavily on top of my sleeping body, then purr VERY loudly, till I stroked him, as a sign that I actually would get up soon. If that didn’t work, while the purring continued, he would extend his claws and, very lightly indeed, keep gently tapping my sleepy cheek until I spoke to him. Marvellous! Made waking up, in the days when I used to sleep flat out, something of a pleasure! Somehow he used to know when it was the weekend and gave me an extra hour! Very clever! Very sad to see him go....I did literally....he was in my bed! Sorry! A trip down memory lane😍
The info on LAM is very informative- knew nothing about it before chatting with you on this site. You seem to be quite a rarity. I do hope you manage to stay reasonably stable I know you work hard to do the best for your health, mind and body. Vrry well done, Fran....you put a lot of energy into life...and to your friends on here 🌹💞🧚🏻♀️😘 Love xx
Yes Aria is missing Bea and wants treats all the time. She doesn’t like the windy wet weather either 😃 sulky puss!!
On the forum there’s Kemety, my LAM Sis I call her, and another lady contacted us called twolungs..I checked 4 years ago two ladies contacted the forum but never seemed to get many replies..
Exactly it is hard work.. I have to work on avoiding pleural effusion this year with this low-fat diet..I could have cried at the physio today, my lymph glands he said..I bought this arnica oil from Weleda he suggested for aches and pains and massaged some just now on my neck and shoulder, wonder what happened there..As I said to Anne every time I go to physio I lose a knot and gain one
Yes, the few people with LAM on here are a select group, Fran, which is a shame...there may be more shared ideas if there were more. You have to cope with more complex needs than asthma, though it doesn’t feel like ‘just asthma’! Do you have the sort of exacerbations we with asthma have, when it’s so very difficult to just keep breathing and stop coughing? You do speak about shortness of breath but I’m now wondering if this is every day, or linked to exercise or viral infections...or all of these? Sorry to quiz you, and you can ignore me, honestly!! It’s just quite an obscure condition and it helps to know a bit more about things. I’m so sorry you’re landed with it. I hope your back/shoulder is becoming less painful after your physio sessions.
Oh well, I’ll see if I can find some sleep now...we’ve got another viewer for the house coming tomorrow, so more tidying and polishing on the agenda for tomorrow, though polish can’t of course be used...me and my perfumes! I hope you’ve settled back after your usual wake time....more herbal tea?? 😀 Good night for now, Fran. Have a relaxing day tomorrow 💞🦋🌹🐈🌟
I have never had an asthma attack so I should have known..I have had a couple of allergy attacks which may have led to asthmalike attack, one to Symbicort and one to pineapple!!
How do I feel? Breathless yes..I have 4 inhalers so all in all I inhale a minimum of 16 puffs a day of chemicals 😃
I have to take 4 puffs 15mn before going out or exercising, and 4 puffs in the middle of the night.
What they thought was nocturnal like asthma is probably apnea. The pharmacist has found a place where I can get a new generation machine in Geneva. I have to make an appointment.
That keeps me going. I feel better since I have been on Prednisone less gasping for air, less thick mucus, less aches and pains, less nasal congestion.
I cough yes usually means I have mucus down my throat or not enough air getting in my airways so more inhaling clears it.
I don’t like central heating or heating I have to breathe in, my system closes up, I need to get some fresh air.
Chest tight that is when I am going to have a virus usually..or an infection of some kind..I don’t get colds anymore I get bronchitis straight away. I feel it has gone from the silly sore throat to my chest burning straight away. When I get the silly sore throat I start nebulising pulmicort and atrovent..I can increase inhalers, Prednisone etc I just take more.. I haven’t managed it, it is starting to look nasty, I take my rescue antibiotics, I have 3 different ones, I alternate. If I am lucky I’m over it. If it doesn’t do the trick I phone the respiratory unit and I go straight there, have pfts, an xray if needed and more meds.
I wasn’t proactive enough before I was wondering should I should I not, now I get on the meds straight away and I am so much better, so much better!!
So that’s why I always say don’t let anything linger. I have avoided the bouts of pleurisy I use to have etc..
Perfumes can give me nausea, fabric softener is the worst!
That is so informative and helpful. Thank you so much for taking the trouble to answer my questions. Now I know very much more about LAM, and your health problem. Just one more question has sprung to mind, sorry, but how do you cope without central heating?? Or have I misunderstood something?
You seem to have to know your condition so very well to be able to limit it as far as possible and respond promptly to complications arising. Though I suppose that applies in some ways to all of us. With asthma problems, it’s hard to find a GP who knows enough. It was years before I had an idea what my triggers were, with exacerbations following exacerbations, limiting my career eventually and almost all the suggestions and deductions were a home industry, because my triggers were just a bit unusual as far as my GP was concerned. You must have even less medical expertise to call on. Congratulations on getting so very well informed, Fran 🏅
It’s snowing here again. Just having a coffee between tidy jobs for our viewer. I hate viewer days, with people eyeing up your home, as well as the strict tidy ups. We’ve had about 35 so far!! The estate agent convinced it’s a popular house, but we can’t get a sale to stick. We’re having one or two new photographs taken this week to see if that helps....who knows!
Have a lovely day, Fran. Hope you feel as well as possible. 💞 🌟💖🌹👯♀️⚽️ (I see PSG top of the league! 😀)
I walked to the village and back in the end. It stopped raining. I feel better for it. I have two canvas shopping bags so I can divide my daily shopping. It’s ok.
When they thought I had asthma, I had a kind GP, he had his only lot of respiratory problems I think, he referred me straight away to Charing Cross Hospital Respiratory clinic.
First time round I had the asthma nurse she referred me straight away to the Consultant, a great lady..of course she was so good she moved on to St Mary’s I see she is a COPD specialist..she also had asthma. She gave me a lot of tips. The best one was everything is tied to the right inhaler and good inhaling practice and she gave me Seretide 250 and an aerochamber. It was fine if only it lasted.
Then I saw some rubbish registrars/locums out there, I couldn’t understand a word sometimes, and I’m
a foreign language teacher so I have a lot of empathy, I got some reports full of spelling mistakes from whoever typed them..and more seriously medical mistakes. It was shameful.
They immediately put me on rescue meds and stopped worrying about me then. So I got my NHS load of cheap generic inhalers, changing according to budget needs and was put in different programmes, Smart then Mart..
It was useless, I was sick all the time, just like I read on the forum, one chest infection after another, pleurisy you name it..
I got all my help and information from Asthma Uk. And I strongly advise you to do so if you haven’t already.
Central heating? Well in my bedroom I switch off the radiator, and I leave the window open all day with the blinds down because I have a ground floor flat. I close the windows and the curtains when I go to bed but I am warmly dressed under the duvet. In the living room the cat doesn’t like the catflap so the French window is opened when I’m in so she goes in and out of the garden..I’d rather be warmly dressed, have hot drinks and switch off some radiators.
Ooh... Francoise, a lovely name...though my iPad doesn’t manage the cedilla for you!
Glad you managed a walk to the shops...I’m sure it’s a great health and social benefit, and one I’m hoping to have if ever we move house.
Your account of the problems you encounteredon your way to an accurate diagnosis is frightening. With a lesser illness, I mainly diagnose myself and my GP agrees these days. Your suggestion for using AsthmaUK helpline is one I might take up. I have thought of it when I’m arguing with myself about the need for a hospital visit, but I’m afraid they too might snatch me in!! I’ve weathered a few low oxygen times, rightly or wrongly. I usually pack a bag just in case, then glower at it from my bed, propped up on a mountain of pillows, breathing, breathing slowly and steadily. Very very tiring and unnerving....tho I force calmness on myself. I’m not alone, i have John, my husband, on standby - he knows the drill! It’s worrying me just thinking about it! At least I’ve got ‘straight’ asthma, touch wood, not with worse complications. But it’s bad enough. I do admire how well you’ve got your difficult situation understood and stabilised so far. There are such wide ranging considerations!
Thanks for your newsy post, Fran. Fascinating, as always.
I’ll just have a cyber dance before sleep....wonderful exercise!! 👯♀️💃💃👯♀️💃💃🌹🌹 xx
Thank you so much for your very welcome concern and resolutions. My problems listed are at exacerbation times...such as the three on the trot I had in the three months before Christmas. Once through those tunnels, I survivequite well with care over my triggers and hopefully no colds or flu. I’ve never seen a respiratory consultant but my old GP sound except aroundidentifying possible triggers. Replacement GP not so good, but we’ll see how we go. Sorry if I became a bit despondent in the early hours. I certainly plan to take your advice very soon... might consulthelpline on my salicylate issues. There might be guidance I don’t know about.
You’re a kind girl, Fran 💕🌟 Loved the teacher’s voice comingthrough 😍 !!
You’ve had a good day...love the sound of steamed spinach and cod....one of my favourites, but John winces so have to eat similar things when he’s out, or has something else. Yes, heavy rain here today, must be a huge black cloud over Europe🌫☔️ We had a good snow covering first thing but almost gone now, thoughdangerous ice underfoot. I haven’tventured forth but John reported back when he took the bins out!! I’m on the narrowcolumn again, so I’ll finish and go to your other reply. Prefer the website to the BFL app!
Thanks so.much for such an informative link. I confess I knew very little about the disease and feel even more in awe of you and the ways you cope now I know more. Aria is truly a beautiful cat...and I think she knows it 😂.
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