Sunday, 30 October 2011

Great South Run

Just a short sweet message to say a very good luck to one of my friends that are running for Cystic Fibrosis today! She will be running along with my sister and my name written on her back! She has raised about £250 with a promise of more from her family once she has completed :)


Wednesday, 26 October 2011

Iv time, hassles and bonuses.

So I started Iv's Monday, first time ever being day cased, literally had a blood test had the first doses of my Iv's (Fostfamycin and Tobramycin) and was sent on my way! It all seemed very organised. My hands had started tingling after my meds but I get this tingling sensation in my hands quite often and randomly when I'm not on Iv's and it usually stays for an hour and goes. I keep meaning to see a Doc about it but then forget till it happens again! This time I happened for 8 hours and I was starting to pannic.... was it a reaction as I am allergic to a lot of Iv's? Had something happened to the nerves in my hand? Was it going to stop?!! When we got home Mum did some research on the internet and it came up as a common side effect of high blood sugars, which I am borderline and I'd eaten a lot of chocolate that day and they had started putting my meds in Glucose instead of water for the first time maybe? So I told them I wanted my meds in water from now on and I have been fine so far so fingers crossed!
Anyone who reads my blogs will know I have a real phobia of needles and I can't deal with blood tests. Monday my port bled back fine so no has been bleeding back all year so I had no concerns but then yesterday it decided to just stop! I was so angry/ upset and ready to just give up the Iv's. My nurse then tried a blood test, knowing how phobic I was and she missed my vein and then was wiggling it about trying to get it in a vein which was horrid!! So then I didn't want her to have another go so had to wait for an F1 blood testing doctor who was amazing and had a good old feel and got it in one! Thank goodness because I was so worked up I felt like I was going to be sick! So that was that over but should Imagine I will be going through it all again for blood tests next week!
Next moan, the home care delivery company! Guess what time they delivered my fridge meds that we had been waiting all day for 00:30! and they rang the house phone when they were near and banged on the door loud enough to wake my 2 little sisters up! Really quite ridiculous!
Anyway now I think we're sorted and should have a good few weeks. Marc and my grandparents are over tonight as we are doing a family come dine with me! My littlest sister is starting tonight and she is making leek and potato soup, pizza and salad and harribo cupcakes! so should be good! I also have lots more planned for the 2 weeks, start some diploma work, help Mum sort and tidy there house up, get some mega good physio's done, paint my nails, sort out my wardrobes, take some nice pictures of the family..(ready for Mums xmas present shhh..) watch some DvD's and see my friends that I haven't seen for ages and oooh hopefully my iphone 4s will arrive, never had an amazing phone so super excited!
Last thing to report was there was a small tornado in our area yesterday evening, I didn't see it but lots of people have put some awesome pictures on facebook and it made the news so bit of excitement for Sussex.
Hope everyone is well! M x

Wednesday, 19 October 2011

Another Step Forward...

So recently I was complaining that Marc and I seemed to be taking one step forward and two back, well that continued yesterday where I felt we took a massive fall backwards, for Marc's medical tests for this job, he found out he needs even more tests, which seems to be becoming relentless and he feels like he is slowly losing grip of this dream of his! My Mum has had to reluctantly try and sell her horse due to lack of funds and no-one about to look after my little sister since my Dad moved out. Well this was going well untill the vet check on the last hurdle just before a woman was going to commit to buy, announced he was 5/5 lame, which is an incorrect judgement so Mum is getting a second opinion but the lady has pulled out and doesn't care for the second opinion! gutting as she was so sure this lady was going to buy and was kind of relying on the money coming in as she is rather broke, and I had spent the whole night before last up coughing, so out of the possible 5 hours sleep I could have had, between My late and early at work, I probably had an hour of actual sleep so felt exhausted and emotional and everyone else's stress and problems were just as much my own as why is nothing going right for the people I love and deserve it the most. Then my Granddad phoned just for a chat and ended up telling me one of his close friends had had 2 heart attacks in the week, recovering from the first but being left presumably brain dead from the second, with very little hope of recovery, which put all of our other worries into prespective and made us all feel even more down and with that I snuggled up to Marc at 8pm with a DVD (toystory) and our duvet and was fast asleep by half past!
Today has been possibly a more positive day:D Marc has found out if he does need these tests he can get them in the next week (will have to pay but will be worth it) and then hopefully that will bring a positive conclusion that he is fine! Mums seen a few experienced horse people today and they have all said there is no way Freckles is lame so she is more hopeful that the next person to come along will actually have enough experience to see he is no way lame. And the third positive contributing to my step forward and something I shouldn't really say as it might jinx it but what the hell, I'm excited! There is a slight chance I'm up for promotion next year, found out you have to be 21 and my manager was hinting that they will be needing someone immediately after my 21st and they will be asking our team first then she kept hinting for me to make sure I attend certain meetings in the next year so keep your fingers crossed for me!
Lets just hope tomorrow continues with the steps forward and we have no more steps back!

Tuesday, 11 October 2011

CF at work, Marcs dream job and my Sister and her CF

I wanted to come and just write a really positive message about my job. I work in a children's care home with Children and young adults with learning disabilities as I think I have probably mentioned before. Anyway, I work a set 40 hours a week, which I just manage with and it is most of the time great! We took some of them on holiday last week, which meant I got to go as one of the staff:D We went to centreparcs, On Holidays the shifts are done different and most the staff work 7am - 10 pm everyday, or they swap about so one day of the week they do a shorter shift. Luckily they organised for me to have the only double room available, the only one with a TV and I did a 9am - 8pm shift everyday, so I had 2 hours in the morning and 2 at night where I could go and sit on my bed and do my physio and my nebulisers whilst watching some TV. It was really good. And I stayed well! Then they would come off shift at 10 pm and we would sit and watch TV together for a bit, which I could relax knowing I'd done everything then off to bed at about 11 ready to get up at 7 again the next day! So I just wanted to share how well they had worked around my CF. All the staff were interested in what I had to do, but not to a nosey point, they would just ask a little more each day. Now I feel totally comfortable around all of them which is really nice for our work environment. I am back home and to my normal hours now, which is great as I missed Marc like mad, and just being at home.
Marc is still in the middle of the different medical tests he needs to pass to get this dream job of his, the last few months we seem to have taken a giant leap forward and then rolled back but now we seem to be slowly moving forwards so If people could still keep there fingers crossed for him that would be great then I can talk about it without worrying I'm going to jinx it!
I've got a hospital appointment Thursday, bit annoying as I can't lay in on either of my days off now as Fri I have a jab in the morning, but o well, these things have to be done. Then I'm in for planned Iv's on 24th Oct:( I planned them because I have to work over xmas and I do not want to get ill, plus it's been a whole year since i had any Iv's which I have been lucky but I seem to not last after the orals at the moment so need a boost! I hate Iv's I seem to become an emotional wreck, my needle pops out my port pretty much everyday though I'm trying some new needles this time so fingers crossed... Plus I don't want to stay in at all because it is so far away from home and I become a nervous wreck, I just don't trust nurses, except my actual CF ones which is really bad, but have had some experiences!! so I'm going to ask If I can just sort it from being a day patient, probably not but worth a shot!
My Little 9 year old sister had to go to hospital yesterday, she also has CF but seems to suffer a lot more with the stomach side and she had another blockage which was causing her to sick up some pretty nasty stuff, they gave her 3 movicols to drink and upped her lactulose stuff which I think has done the job, thank goodness as she has had 2 serious blockages since she was born bless her, I hate seeing her ill, luckily her lungs seem to be a lot better than mine ever were, how strange how differently CF can affect each person and it also shows how much more advanced they are with treating the younger generation. I'd love to post a picture of her here from a show I watched her in the day before she went to the hospital with the blockage as she did so well and looked absolutely beautiful and smiley even though she had really bad tummy pains the whole way through! But I don't know how with that I will say good bye and if you are still reading sorry if I have bored you beyond belief but thanks for sticking with it!