Report came through..

Hi Everybody!! Hope you are enjoying the weekend.

The Report was so complex that the GP said he'd have to research the answers :)))

So I wrote an email to the respiratory clinic because I noticed my asthma has gone up to severe. That is because of the dyspnea, shortness of breath. It should improve with physiotherapy because I'm out of condition he said. It's a vicious circle you get chest infections so you do less so your muscles grow weaker so you don't be breathe so well etc..

They wanted me to taper down the nebs and I said no 😃. I mean give me a chance I'm just starting to walk round the block again. I said you usually say that inhaled steroids is better than oral steroids.

And I liked the Atrovent or Ipratropium mixed with the Budesonide. The other night I didn't take it because the pariboy aerosol is so noisy and Dad was watching telly. (He has been very stroppy by the way he can't take me being ill, he just wants my full attention, that's 87 for you..) so I skipped it and ended up with 4 vento and 2 seretide at 2 pm, herbal tea and honey wondering if I was going to phone emergency but I took it in my stride as usual put my earphones and chill music and fell asleep..

Regarding the LAM we are waiting on the teaching hospital blood test results, then we'll know for sure. They seemed to have eliminated all the other ghastly genetic diseases..

Still I'm supposed to have a scanner of kidneys and abdomen to see if it has spread..

So for me it's one day at a time from now on.. And we know about good days and bad days.. Bad days are psychological more than anything else, so I try to cheer myself up, go for a walk, look at the shops, have a hot drink and listen to other people's conversation😃 Watch a good movie on streaming etc..I write as well but in French 😉 for a radio listener's blog..if any of you are interested DM and I will give you the link..

Take care my dear friends and thank you so much for all the encouragements xxx

[Gino39]

Hi there Fran, another day another challenge for you it seems... Do you think that there is a book in it somewhere? I like your stoic attitude;0) By the way I'm dyslexic so please forgive any silly typos! ;0) I can't remember did we have the conversation about acupressure points? There are a couple of good ones, one at the top of the esophagus and the other at the bottom of the rib cage, central, both of sic can give some light soothing relief when you have a wheezing do. The other good one that I find is holding the left pulse point with the right thumb and forefinger to help relax. It's worth playing with;0)

Good luck with it all,

Gino

[Hidden in reply to Gino39]

thanks Gino..yeah I forgot all about it I must say, I ve got Dad with the telly full sound I need to take him to the Audimat people because I cannot stand another Trump debate or anything of the sort, he seems addict to this American stuff and news channels..

I need ear plugs more than anything else lol..

[pucageorgie]

I admire your positivity so much! Keep up the good fight and I'm crossing my fingers that it hasn't spread to kidneys or abdomen.

Good for you, too, for sticking to your guns about the inhaled steroids. Sometimes our own gut instinct is better at knowing what we need than a doctor can be, especially with a case as rare and unusual as yours.

[Hidden]

Thanks Georgie :)) I am positive because it seems so remote..apart from the Asthma getting worse with the years nothing has really clicked that I am having to put up with this Lymphangioleiomyomatosis..I mean it sounds like a rabbit disease!!^^

Exactly they pump you up with weeks of pred and when you need your nebs they are reluctant..must be a cost thing..I am going to try the British Lung Foundation now I know the actually name and see if they have a bit more to say..

The wiki page is absolutely awful..en.wikipedia.org/wiki/Lymph...

I feel blessed to have gone so long without having any of those symptoms..those poor women who have suffered this since the age of 30 years old..