In fact I ended up with 15 days doxy, 5 days minimum of pred and a box of 28 to use at my convenience..
So far very little change but I went out to the shops again to buy my gluten free muesli, granola and lactose free almond milk😃 but stopped at the local pub for a jacket potato and a guinness to drink with my paracetamol and felt better!! 😂
Then I went to the health food shop and got the CBD oil all the Lammies are talking about for breathing and pain..you can mix it in your massage oil, the Americans ingest it..they swear by it..could be better than morphine..five weeks until Im home is a long time plus I’ll have to wait for an appointment..at the moment Im finishing my lot of meds, and staring at the box. It was very very expensive. That if you don’t want the one mixed with olive oil and I don’t know what else in it. Anyway desperate times desperate measures..
Saw the Arsenal-Man U match, thought of Penny
jumping up and down on her seat and shouted Mourinho come back!! 😁 I mean we have to beat them on Feb 12th!!
Hi Fran couldn't read the report but so pleased you are doing well and managing to go to the shops and pub lol😁. Have a lovely weekend and take 😊 Bernadette xx
You have to click on the photo and widen it I think. I can on my iphone.
Yes it is being back on prednisolone which helps. There will be a price to pay when I stop after those 5 days..still you are right I make the best of it for now 😃
Hi Fran, well at least your LAM is stable, should imagine your cough is one of the biggest problems as it affects your sleep. I am waiting an op on my sinus's and to staighten the bend in my nose, which I am hoping will stop the infections i kept getting last year and ease the cough. Here's hoping the prednisolone relieves your problems until you get home. You always manage to sound cheerful and seem to be enjoying your trip. Keep well and enjoy your weekend. Irene x
Not to undermine doctors but when they say your LAM is stable it makes laugh..I mean my airways are blocked with multiple cysts. I suppose I am lucky not to have pneumothorax, angiolypomas on my kidneys etc..
I cough little at night. It’s more like being congested, and oppressed, it stays on my chest and I can’t breathe. Yes the antibiotics and pred are starting to work thank you 😊 I am actually coughing now! It’s much better!
Buenas Dias Querida. Good News, I can read the report on my Computer, not a small phone Screen. Hopefully all goes well and you can control the pain & well Being with your CBD Oil. Enjoy the rest of your 5 weeks Fran with a reunion of Family. Stay Well. Besos . xxxx
Morning Fran, sounds good from all angles, good food, good meds and guiness. Last September I bought in from usa CBD salve, and I have had so much relief in fact I have stopped the oramorph, so my head is clearer and I think better, the thc part is higher than the oil that is legal in UK so I cannot purchase it and the USA company cannot send it to me. Hope it works for your pain. Happy weekend. Jane🍻
Oh yes no thc in the one in the UK I bought yesterday. I hope it isn’t useless it cost me £295!! 1 drop is 30mg of Cbd, so quite low compared to what my American Lammies are using.
Well it sounds promising. Oramorph that’s probably what the Consultant was suggesting they use in those pain clinics.
Hi Fran. I am.glad that things with your LAM are stable but the pain aspect is a problem. Thankfully your doctors seem to know what they are doing. I hope it's not too cold in London. Take good care and take it easy. xx 😊
"Not so bad", I like the glass half full attitude, but yes you are right, things could be so much worse. I hope you can get the pain management sorted out after gallivanting half way across Europe yet again. Keep warm, another cold snap on the way for next week.
Thank you dear friend. Well it always looks worse on paper 😃 what a list of ailments. And the low cortisol dosage compared to the norm..but then as I usually say if they can repair me for a while longer, it’s incredible what we can put up with really.
Thank you 😊 yes I’d like to enjoy a little freedom of movement but we are lucky that there is always an hospital around the corner!!
Yes,you certainly have kept yourself very busy whilst at RBH. Good for you girl! Excellent to know that your LAM is stable at the present time and that you have met an understanding Lung Con/Professor. I'm sure once the referral to pain clinic is made you might get some results there too.
Wishing you well and hope you've been wrapping yourself up from head to toe as it's been so cold.
Yes good people there. They sorted me out with doxy and pred. I didn’t have to puff the Ventolin last night and slept a little more at last!
I’m a bit weary about the pain clinic. Never been to one, and don’t want to feel all drugged up.
I must say the M&S parka coat I got in the sale as soon as I got here is great. A good hood to it too. I don’t look my best, will post a picture for a laugh!!
You sound much more cheerful, which I’m so glad about. I hope you have some helpful advice from the pain clinic. A glass half full is much better than a glass half empty. Enjoy the rest of your break in London, and safe journey home. All the best xxx
Hi Fran, hope all goes well for you and you get some help from the pain clinic. Your meal and the Guinness sounds good. Keep warm well wrapped up. Love Majt 😘 🌷🌹 xx
I’ve only just caught up with this post, Fran...I do miss some occasionally, somehow.
So basically RBH have checked you over and now let you have rescue meds, in smaller amounts with regard to the pred. Prompt antib’s we’re not forthcoming in Switzerland, so that’s an improvement.
Not sure whether more pred will help in the long run....won’t this set back your move towards complete withdrawal from pred?? Don’t mind me....I’ve maybe got something wrong! Hoping your pain improves now you’re back on the dread pred, at least.
YES we beat Arsenal!!!! And played so much better than with Jose.....look out on the 12th!!
Hope you enjoyed watching Chelsea coast to victory too this evening.....couldn’t just spot you in the crowd! 🤣 Your plans to join us over here again next season are exciting!
So we watch the One Show tomorrow to see who we all play next! 🤞
Good night, Fran....lights out here 🚦Glad you’re enjoying busy London.
It is was a good night, 3-0 considering Sheffield Wednesday decided to park the bus! The new player Higuain was totally under siege!😢
Yes the Rhs assessment is good. No they had to give me pred to help with the lung inflammation so I could breathe but on top of my daily Hydrocortisone. So had 20mg for 5 days, I’ll do 15mg tomorrow, 10mg Tuesday, 5mg Wednesday and out.
It won’t sort the Addison disease side effects no so I have asked the Endocrinologist in Lyons to refer me to the pain clinic he mentioned.
It takes time to get those appointments as you know. RBH preferred it that way, too short of time here and it would garantee continuity.
They said it wasn’t clear cut. That if my adrenal machinery didn’t wake up in a few months a small dose of pred could be added. It was very useful to have this second opinion because it is presently a painful stoic choice.
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