I cannot believe the weather we are having at the moment. One day it is dry and sunny, the next damp and foggy. In fact forget days, we are having four seasons in one day and it is playing havoc with my breathing.
I've coped OK at work but have had to resort to my oxygen if I go anywhere out of the room so that's a bit of a pain I have to say. However the canteen people now recognise me and know my name so in some ways that has been a benefit as they have come over all helpful. Since wearing my oxygen I've had random people come up and ask me how I am, offer to carry my food and open doors for me. On one occasion I even got a hug!
This makes me feel more secure but at the same time slightly uncomfortable. I'm touched by how many people have said they are rooting/praying/wishing for me. However for someone who is more comfortable under the radar, being recognised all the time is very strange. Still hopefully it won't be for long and I'll be able to nip out for a sandwich without my oxygen again very soon.
Yes, the letter has come! It is official! I get my new medication on Monday. I will be admitted to the Royal Brompton on Monday morning where the switch over will take place and they will turn the wick up a bit. If all goes to plan I will be sent home early evening, if not I'll be spending the night until things get sorted. To be fair the new drug is virtually the same as the old drug so no one is expecting any problems there. The problems for me come with the increased dose. Regular readers will know that I can only tolerate a very small dose of Flolan. They have tried to increase me to the prescribed dosage many times over the last three years, yes I have been on it that long, but each attempt has always ended in disaster. I've ended up in bed unable to keep even water down. However, I am slipping and this has to be halted before it gathers pace because once the downward slide begins it is very difficult to stop it and near on impossible to reverse. To be honest I'm rather hoping I get the call this weekend so I can avoid all the fuss but I doubt I'll be that lucky.
This weekend is going to be a quiet one. Laurence is working and Andrew is in Paris with Svet to see a concert so it will just be me and Peter. As much as I love both my kids, it will be lovely just to chill out and relax rather than be running around cooking and washing for them. Andrew returns on Sunday and is back in college on Tuesday, so I can also look forward to a peaceful week.
There was a few days of panic this week when I thought I'd lost my bank card. Now I'm pretty good with things like that. I'm very security conscious, I change my pin regularly, I check my bank account regularly for any odd goings on and I never let anyone else use it. So you can imagine the feeling when suddenly it wasn't there. Fortunately I knew where I'd last used it outside and clearly remembered using it at home at a later date to check my bank balance. After a thorough search I admitted defeat and rang the bank to report it missing and order a new card. The new card arrive yesterday and I was very relieved to find my account was intact. I found my old card this morning in my handbag. The same bag I'd tipped out on the table to check, twice. Typical!
This weekend is the weekend of the PHA Conference. Unfortunately I've been scuppered from going once again. This time by Peter not being able to take any time off. I hope all my PH friends have a really good time and I hope to join you next time around.
This makes me feel more secure but at the same time slightly uncomfortable. I'm touched by how many people have said they are rooting/praying/wishing for me. However for someone who is more comfortable under the radar, being recognised all the time is very strange. Still hopefully it won't be for long and I'll be able to nip out for a sandwich without my oxygen again very soon.
Yes, the letter has come! It is official! I get my new medication on Monday. I will be admitted to the Royal Brompton on Monday morning where the switch over will take place and they will turn the wick up a bit. If all goes to plan I will be sent home early evening, if not I'll be spending the night until things get sorted. To be fair the new drug is virtually the same as the old drug so no one is expecting any problems there. The problems for me come with the increased dose. Regular readers will know that I can only tolerate a very small dose of Flolan. They have tried to increase me to the prescribed dosage many times over the last three years, yes I have been on it that long, but each attempt has always ended in disaster. I've ended up in bed unable to keep even water down. However, I am slipping and this has to be halted before it gathers pace because once the downward slide begins it is very difficult to stop it and near on impossible to reverse. To be honest I'm rather hoping I get the call this weekend so I can avoid all the fuss but I doubt I'll be that lucky.
There was a few days of panic this week when I thought I'd lost my bank card. Now I'm pretty good with things like that. I'm very security conscious, I change my pin regularly, I check my bank account regularly for any odd goings on and I never let anyone else use it. So you can imagine the feeling when suddenly it wasn't there. Fortunately I knew where I'd last used it outside and clearly remembered using it at home at a later date to check my bank balance. After a thorough search I admitted defeat and rang the bank to report it missing and order a new card. The new card arrive yesterday and I was very relieved to find my account was intact. I found my old card this morning in my handbag. The same bag I'd tipped out on the table to check, twice. Typical!
This weekend is the weekend of the PHA Conference. Unfortunately I've been scuppered from going once again. This time by Peter not being able to take any time off. I hope all my PH friends have a really good time and I hope to join you next time around.
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