Again, I apologise for my lack of blogging, I've been so unwell lately I have barely done anything other than lay on the sofa, eat food and play iPad games. I have been in a great deal of pain, particularly my lungs, but also my arthritis and my mouth/lips/throat are very sore due to increasing my morphine dose (oramorph) I have needed to use it a lot more because I've been struggling with the pain, but I have an intolerance/allergy to it and it causes my lips to become very dry, cracked and sore, also my tonsils and tongue swell up and it's very uncomfortable but it's the strongest pain relief I can have really and without it, I'd be suffering a heck of a lot more. So I have to deal with it, just depending on extra lip-balm and lots of water to keep my mouth and lips hydrated.
I'm back on IV's again, Ceftaz, Aztreonam and Tazocin - I think it's going to be a permanent thing now as everytime I stop IV's (literally for a week maximum) I go so downhill within the first few days, so as much as I hate being on IV's, with all the side effects and the time and effort it takes to mix them all up, they do keep me feeling more 'human' and I can at least walk myself to the loo without needing help, it's annoying, but just another thing to add to my list of 'stupid CF stuff' haha!!
I have my appointment at Harefield on Wednesday 23rd May, to be fair I'm not 100% sure what the plan is, nobody has really told me anything, as far as I am aware, the reason I'm not on the list is because my average blood sugar was a little too high for their liking and it was my fault, I had spent too much time trying to gain weight, so I took my foot off the 'diabetes pedal' a bit and stepped too much on the 'food pedal,' so I wasn't controlling my sugars well enough I needed to get the balance just right and I hadn't, it then showed up in my blood tests and they were slightly concerned that it had increased (in April 12%, since November when it was 9%) but I've spent every single minute since that phone call making sure every meal, every snack, every fizzy drink is covered by insulin and I hope when they repeat the blood test on Wednesday my numbers will have got better. I also have to meet with their diabetic team to get a 'plan' anyway, I've also got to see the psychologist and their dieticians.
So I'm hoping I will be listed soon, but at the same time I have no idea what is going on! Papworth aren't sure either because they keep asking me, I was hoping they had a clue but they were none the wiser. I remember the phone call from Harefield just after my 2-day assessment, saying "we want to offer you a place on the transplant list, but we need you to meet our diabetic team so we can get your sugars under control in preperation for transplant" so to me it seemed like as long as I worked on it between then and now, and then met with their team and got a bit of a plan of action of how to keep them normal, then I will be put on the list??
I don't know, to be fair I'm a lot more unwell now than I was when I had my assessment, I'm now on 24 hour oxygen, I can't take it off at all so I've been pretty restricted to what I can do as I'm not 100% confident wearing it in public, it's embarrassing especially when people look at me :( I also struggle with a lot more pain now and after having 3 lung collapses since Feb, my health has took a big knock, I think if I was to do lung function it would be significantly lower, I still don't know if I'll be able to do it on Wednesday because my lung collapse still hasn't completely gone, it's very small but still there, so I doubt they will let me as it's too much of a risk. So I'm hoping more than ever that they do list me because it's getting a little bit scary and annoying feeling like precious time is wasting, I could've been on the list for over a month now and you never know I might've had a call :/ I hate being stuck in this limbo place, not getting better and there is currently no light at the end of tunnel, so I'm literally praying they list me ASAP!!!
The final and most exciting part of this blog post is that Josh and I have finally decided to bite the bullet and get married!!! :D
We were going to wait until after transplant, but as I've explained I have no idea if this is even going to happen, I may never get on the list and now I'm getting iller and iller everyday so I don't know how long I'd be able to hang on and if I get on the list, how long I might have to wait for a call. But knowing we have the wedding to focus on takes all the focus away from transplant and feeling ill, planning a wedding takes up literally every minute of everyday so I'm hoping I can focus on that alongside (hopefully) waiting for a transplant! It also gives me motivation to hang on, I had been feeling a little down (hence the lack of blogging) and at times I'd felt a bit defeated it's been very difficult but now I know I can't go anywhere, I have to hang on and marry Josh :) CF will not win this time!!!
We are going to get married around April 2013, so it's not too long to wait, but still far enough away that we have plenty of time to plan every little detail to perfection. It's been very exciting looking at venues and particularly wedding dresses! I'm excited to go and try dresses on in the next few weeks, but first, on Thursday, we are going to view what we've deemed our perfect venue, it's quite expensive but it's absolutely gorgeous and we absolutely love it!!! The fact Josh or I can't work now means the only money we have coming in goes straight on bills and the mortgage, without too much left over, but thankfully we do have some savings and we have the money from our engagement party which has all gone into our wedding fund. It's the most important day of our lives and we want it to be great and memorable - I know money doesn't buy you happiness, but I have no idea what my future holds or how long I will be here, so at least I know I can marry the man I absolutely love and adore, on our perfect day with no regrets :)
Thank you for reading :)