Tuesday, February 28, 2012
Joints and other stuff...
I had my rheumatology appointment yesterday, which was quite thorough - took 2 hours in total! I have CF related arthritis since my late teens, which causes my joints to become painful intermittently. It used to be mostly my knees and elbows and the pain was helped with non steroidal drugs. However post transplant I am not allowed to use these painkillers any more so it has been a bit more difficult to control. Usually what happens is that every month or two I will get really sore knees (usually one more than other), elbows and sometimes ankles and wrists. It usually lasts about 5 days then goes away. It doesn't really hold me back but can be rather annoying - it makes it painful to drive the car and to walk Seb, as exercise seems to make it worse. My main problem recently has been my hips - which flared up big style after the team jac walk! Then over the last 6 months I have had a really painful shoulder and can't lie on that side. The consultant was lovely and did a very comprehensive examination. She said there is some fluid in my left knee (although that knee is not sore at the moment....until she pressed it anyway!), my hip has really quite restricted movement, but I knew that anyway. She felt this was all related to my CF. My shoulder however seems to be a different problem (just coincidence really) and is known as an impingement syndrome, so this should be helped by a steroid injection into the area. They did x-rays of various joints, took lots of bloods and I will go back for these results in April. I will be getting the steroid injection next month - actually looking forward to it because I haven't been able to sleep on that shoulder for about 6 months and it is really getting on my nerves now! So overall I think it was a useful assessment and although there is probably not much to be added to my treatment, I at least feel reassured that is most likely just CF related.
Work has been busy as usual. I was a really interesting conference last week about ADHD (attention deficit disorder). This is becoming more relevant to general adult psychiatry due to children with ADHD needing transition to adult services. Although ADHD can improve with age, some people do continue to have symptoms into adulthood. We are also getting an increasing number of referrals of adults who have no previous diagnosis but retrospectively think this is their diagnosis, having been missed in childhood. This is why I am trying to build up my knowledge around ADHD and how to assess and diagnose because I want to be able to deal with these referrals appropriately.
Last week myself and Victoria had a nice catch up with Mandy. one of the LLTGL trustees. She was attending a large organ donation conference in Glasgow and had some interesting feed back from this. Mostly though we just munched on our burgers :-) There is a LLTGL advocate weekend planned for April, but I have Derren Brown tickets for the saturday night! I am trying to see if I can swap anyone who has tickets for the thursday so that I can still do both.
I have been emailing around trying to get some raffle and auction prizes for the ball. It is quite a frustrating task as most of the large companies have their own charity to support and as a rule do not offer prizes for other events. Some of the smaller shops are being helpful and we will just keep working on it! Unfortunately we had no success getting any wine donations from any of the big wine retailers but again, will just have a re think. Just get in touch if you have any questions about the ball or any suggestions for people to contact, get in touch on teamglasgow3@gmail.com. Remember tickets can be purchased online (I will harp on about this :)) HERE
Monday, February 20, 2012
Tickets on Sale
HERE
We have now set up the ticket website for the ball. Tickets are £50 - no extra charges buying via the website and you print your own ticket. If you want to reserve a place you can contact us to make a £15 deposit but full payment is required a minimum of 2 months prior to the event. Although it seems a long way off, we would appreciate people buying tickets fairly early if possible so we can have accurate numbers and to allow us to make payments to the venue.
Tables seat 10-12 if you would rather get a group together - contact us direct if you want to arrange this.
Finally, we will be sorting all the details over the next couple of months but if anyone has contacts or help they can offer then please let us know - we appreciate any help on offer! The main areas we are looking into just now are:
- a band that would be willing to help (wedding band style who can play some 50s tunes as well!)
- we have an option of supplying wine to reduce costs. Anyone own a vineyard?! haha. Or have any contacts who might like to donate a case of wine?
- of course, raffle and tombola prizes will be needed.
contact teamglasgow3@gmail.com or my personal email if you have it ;-)
HERE
We have now set up the ticket website for the ball. Tickets are £50 - no extra charges buying via the website and you print your own ticket. If you want to reserve a place you can contact us to make a £15 deposit but full payment is required a minimum of 2 months prior to the event. Although it seems a long way off, we would appreciate people buying tickets fairly early if possible so we can have accurate numbers and to allow us to make payments to the venue.
Tables seat 10-12 if you would rather get a group together - contact us direct if you want to arrange this.
Finally, we will be sorting all the details over the next couple of months but if anyone has contacts or help they can offer then please let us know - we appreciate any help on offer! The main areas we are looking into just now are:
- a band that would be willing to help (wedding band style who can play some 50s tunes as well!)
- we have an option of supplying wine to reduce costs. Anyone own a vineyard?! haha. Or have any contacts who might like to donate a case of wine?
- of course, raffle and tombola prizes will be needed.
contact teamglasgow3@gmail.com or my personal email if you have it ;-)
Sunday, February 12, 2012
Stobo Castle and The Ball
Had a great weekend with mum at Stobo castle :-) We arrived at 3pm on the Sunday and started off with a cappuccino and chill out in the main area. We had a nice meal that evening and got chatting to some nice people at the table. If you haven't been to Stobo castle, it's a bit strange in the evenings because they tend to sit you round large tables with other people. You can ask for your own table but they don't have many of these. It's fine if you get some nice people to chat to, but sometimes I am a bit anti social and would rather not make small talk - especially at breakfast! Mum, on the other hand, likes to talk to ANYONE. She started that night by suggesting everyone introduce themselves. I was half expecting her to start a team building exercise next...
The next morning we both had a back massage which was great. You don't realise how many knots you have until you hear them crunching as they massage the muscles. We then felt too tired to move from the spa area so lounged around until lunch time. Just before lunch we had the most amazing co oincidence - we met my friend Fi's sister Kat, her husband and mum!! Fi was my good CF friend who sadly died a year past October. It was lovely to catch up with Kat and her mum, so we managed to have some good chats on and off all day :-) Later in the afternoon we both had a french facial and then we went along to a demonstration where they showed us how to do hand treatments on each other, with scrubs and creams. That was good although I got the mad CF wrinkly hands doing mums hand treatment because I kept having to put my hands in water, so she said my skin was really rough on her wee hands! For those that have no idea what I mean it's a known fact that most people with CF get really wrinkly fingers in water, much quicker than normal people. It's related to the high salt concentration in CF people's skin and can be very annoying when you want to have a long soak!
The next morning we made full use of the facilities. We had a swim in the amazing pool. which was nice and warm and has large glass windows looking out onto the gardens. There is a jacuzzi and various sauna and steam rooms. We then had our lunch before heading back to Glasgow. Wee Seb was delighted to see me and didn't give me the cold shoulder I was expecting - think he was just glad I was back :-)
Back to work wednesday and by the end of the day I didn't feel like I had been at a spa at all!! It is really busy as the locum we had to cover the missing post has now left, and the other part time staff grade is off sick. Hopefully we will get some other people to help cover but its a bit manic again at the moment.
Finally, just to give an update on the charity ball. We have set a date for Sat 18th August, to be held at the Radisson Blu hotel in Glasgow (next to central station). The theme will be Hollywood Glamour - it's not fancy dress, just get dressed up in your best ball gear :-) Tickets will be £50, as they were the last time, and this includes reception drink, 3 course meal, wine and entertainment. It will be a fab night I am sure!! All proceeds for Gartnavel CF Unit. If you are interested then get in touch directly with me, or email our team address teamglasgow3@gmail.com.
Had a great weekend with mum at Stobo castle :-) We arrived at 3pm on the Sunday and started off with a cappuccino and chill out in the main area. We had a nice meal that evening and got chatting to some nice people at the table. If you haven't been to Stobo castle, it's a bit strange in the evenings because they tend to sit you round large tables with other people. You can ask for your own table but they don't have many of these. It's fine if you get some nice people to chat to, but sometimes I am a bit anti social and would rather not make small talk - especially at breakfast! Mum, on the other hand, likes to talk to ANYONE. She started that night by suggesting everyone introduce themselves. I was half expecting her to start a team building exercise next...
The next morning we both had a back massage which was great. You don't realise how many knots you have until you hear them crunching as they massage the muscles. We then felt too tired to move from the spa area so lounged around until lunch time. Just before lunch we had the most amazing co oincidence - we met my friend Fi's sister Kat, her husband and mum!! Fi was my good CF friend who sadly died a year past October. It was lovely to catch up with Kat and her mum, so we managed to have some good chats on and off all day :-) Later in the afternoon we both had a french facial and then we went along to a demonstration where they showed us how to do hand treatments on each other, with scrubs and creams. That was good although I got the mad CF wrinkly hands doing mums hand treatment because I kept having to put my hands in water, so she said my skin was really rough on her wee hands! For those that have no idea what I mean it's a known fact that most people with CF get really wrinkly fingers in water, much quicker than normal people. It's related to the high salt concentration in CF people's skin and can be very annoying when you want to have a long soak!
The next morning we made full use of the facilities. We had a swim in the amazing pool. which was nice and warm and has large glass windows looking out onto the gardens. There is a jacuzzi and various sauna and steam rooms. We then had our lunch before heading back to Glasgow. Wee Seb was delighted to see me and didn't give me the cold shoulder I was expecting - think he was just glad I was back :-)
Back to work wednesday and by the end of the day I didn't feel like I had been at a spa at all!! It is really busy as the locum we had to cover the missing post has now left, and the other part time staff grade is off sick. Hopefully we will get some other people to help cover but its a bit manic again at the moment.
Finally, just to give an update on the charity ball. We have set a date for Sat 18th August, to be held at the Radisson Blu hotel in Glasgow (next to central station). The theme will be Hollywood Glamour - it's not fancy dress, just get dressed up in your best ball gear :-) Tickets will be £50, as they were the last time, and this includes reception drink, 3 course meal, wine and entertainment. It will be a fab night I am sure!! All proceeds for Gartnavel CF Unit. If you are interested then get in touch directly with me, or email our team address teamglasgow3@gmail.com.
Friday, February 03, 2012
Swap Shop
The swap shop was not as busy as we had hoped for but was still a successful night :-) We had lots of rails set up and organised the clothes by size - lots of swapping was done and I think everyone came away with a goody or two!
Organising clothes..
Browsing..
Model: Victoria. Fur coat: Model's own.
Me wearing as many random things as possible..
Kirsty's friend was selling her artwork and donating 15% profits! This is her fantastic website HEGER . I got a fab wee t-shirt :-)
Great raffle prize - over £200 of fab MAC products :-) My lovely cousin Sarah won the prize - ideal, since she is getting married in June. She definitely earned it by working hard setting up rails, taking them down, hanging up clothes, carrying stuff to and from car....love you!
We are working on securing a ball venue for this year!! We have decided to host this years ball in aid of the local CF unit, where all three of us spent way too much time over the years! We have a couple of feasible options just now and will be firming up plans asap (by next week). Then the ticket selling and harassment will begin!!
I have had a viral/cold thing all week so work seemed harder than usual! The immunosuppression changes the response to infection and I have found that I seem to get milder symptoms but really dragged out over a longer period. So I started with a mild temperature, then have a sore throat for couple days, then a runny nose, then blocked nose and now bit of dry cough.....I am not sure whether it is better to just get everything for 48hrs like a normal person, or one at a time over a week of two haha. At least I haven't missed work, so guess that's one advantage.
I was at a conference all yesterday - about Bipolar 1 disorder. It was a full day of talks and associated with the launch of a new drug. They had two Bipolar sufferers speaking about their experiences of inpatient and community care in relation to their illness. I thought this was the best part of the day and interesting to get insight into experiences - especially when articulated as well as it was. It makes me realise the CF/transplant patients who are asked to speak at such events to medical staff are probably making more of a difference than they might think.
On a lighter note - I am off to Stobo Castle with mum on Sunday for some pampering :-) It's a hard life. We will be forced to lie about in fluffy dressing gowns, eat copious amounts of food, endure a facial and back massage and generally relax. Torture ;-)
The swap shop was not as busy as we had hoped for but was still a successful night :-) We had lots of rails set up and organised the clothes by size - lots of swapping was done and I think everyone came away with a goody or two!
Organising clothes..
Browsing..
Model: Victoria. Fur coat: Model's own.
Me wearing as many random things as possible..
Kirsty's friend was selling her artwork and donating 15% profits! This is her fantastic website HEGER . I got a fab wee t-shirt :-)
Great raffle prize - over £200 of fab MAC products :-) My lovely cousin Sarah won the prize - ideal, since she is getting married in June. She definitely earned it by working hard setting up rails, taking them down, hanging up clothes, carrying stuff to and from car....love you!
We are working on securing a ball venue for this year!! We have decided to host this years ball in aid of the local CF unit, where all three of us spent way too much time over the years! We have a couple of feasible options just now and will be firming up plans asap (by next week). Then the ticket selling and harassment will begin!!
I have had a viral/cold thing all week so work seemed harder than usual! The immunosuppression changes the response to infection and I have found that I seem to get milder symptoms but really dragged out over a longer period. So I started with a mild temperature, then have a sore throat for couple days, then a runny nose, then blocked nose and now bit of dry cough.....I am not sure whether it is better to just get everything for 48hrs like a normal person, or one at a time over a week of two haha. At least I haven't missed work, so guess that's one advantage.
I was at a conference all yesterday - about Bipolar 1 disorder. It was a full day of talks and associated with the launch of a new drug. They had two Bipolar sufferers speaking about their experiences of inpatient and community care in relation to their illness. I thought this was the best part of the day and interesting to get insight into experiences - especially when articulated as well as it was. It makes me realise the CF/transplant patients who are asked to speak at such events to medical staff are probably making more of a difference than they might think.
On a lighter note - I am off to Stobo Castle with mum on Sunday for some pampering :-) It's a hard life. We will be forced to lie about in fluffy dressing gowns, eat copious amounts of food, endure a facial and back massage and generally relax. Torture ;-)
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