Mojitos!

I didn't realise it had been quite so long since I last posted! To be honest, not much has happened....

I had a CT scan of my chest, I haven't heard anything back following this so I'm taking no news as good news and hoping that I haven't developed bronchiectasis. I had my DEXA scan today, the results are right on the border between oestopenia and healthy, not great but better than my last one in 2006 so I'm relatively happy with that :)

My horrible lungs are still, well, horrible! The last time I had a undisturbed nights sleep was last year sometime, I've just had to accept this is life now! I really notice my stupid lungs when I'm walking with other people, I can't walk and talk at their pace, I get breathless so easily, I find it extremely frustrating and embarrassing. Actually, I get very breathless when I'm walking on my own at my own pace, but I suppose I notice it more and feel more self conscious when I'm with other people :( I wasn't going to reapply for my DLA when it's expires later this year, but it appears that my optimism that my asthma was improving was just that, optimism :( Ahh well, it could be worse, at least I'm not in and out of hospital every other week like I used to be!

I'm still not back at work despite my numerous emails and phone calls. I've now been off for a year, granted it was almost 2 years last time this happened, but still, it's not helping my 'battle' to get back to nursing on wards when I can't even sit in an office..... it would have been so much easier for me to accept medical retirement back in 2007... but I refused to give up then and I refuse to give up now.

And apart from all that, I'm trying to keep myself busy so I don't have too much time to sit and dwell on things. I'm still enjoying volunteering for the Samartians, although it's disturbing how many sex calls or people phoning up to hurl abuse down the phone we get! I do my shifts in the afternoon or evening as my lungs don't like mornings, sometimes it can take a few hours for the wheeze and breathlessness to ease off. I'm having issues when it comes to night shifts - wheezing and coughing down the phone isn't great, so once I've completed all the nights required to become a fully trained Samaritan, as opposed to a New Samaritan, I might have to look at whether volunteering on nights is good for me.
I'm also making an effort to meet up with friends, and have fun drinking cocktails, my favourite pastime :D Haha seriously, I think it would be so easy for me to sit at home moping about how awful my life is, how ill I am blah blah blah, I'm making sure I have some fun times so life isn't all doom and gloom :)

Who wants a simple life?

Do you ever feel like life goes from one drama to another?

Asthma control is so so, could be better but could also be worse so I'm not complaining too loudly. My respiratory team now want to run tests to see if I have bronchiectasis, and I need to have a colonoscopy following some concerning symptoms involving blood. Fun times ahead :(

In other news, I had all my hair chopped off! It was down my back and now it's cropped really close to my head. It's a little shorter than I anticipated but I've received lots of lovely compliments, I'll be happier when it's grown a little longer so I can tuck it behind my ears.

I've also completed the first part of Samaritans training and shifts with my mentor, now I'm free to take calls without being listened in on. I was nervous about it but I found it easier to take calls without my mentor listening in, it felt more natural so that was good!

Disappointment

This morning I received a letter from my respiratory consultant saying that there has been no significant improvements whilst on the trial of Omalizumab, therefore there is no point continuing with it. I'm surprised at how disappointed I felt reading that letter. I mean, I was expecting this to be the outcome as the improvements have been very small and maybe not even there, maybe I was just seeing improvements because I so desperately wanted them. I was really suffering with side effects, mainly joint pain, and I had suspected that the side effects were outweighing any benefits.
I still clung onto that tiny bit of hope that this would be my 'miracle cure', I knew deep down that it wasn't but until someone else told me otherwise then that thought remained. Now, someone else has told me.
I'm due to see my consultant in a few weeks so I guess we'll discuss it properly then.

Christmas is my favourite time of year, but this year I can't shake a sadness. I've noticed my old depressive thought patterns re-emerging. I don't know.... I hope I'm just thinking too much. I can't find the words to write anymore on that, meh.

I hope everyone has had a lovely Christmas, and I wish you all a happy, healthy and peaceful 2011 :)

Mixed feelings

Christmas is my favourite time of year :D This week I've been to a few christmas markets around the country, the atmosphere at these places has been amazing. I'm off to London next week, I can't wait to visit the Winter Wonderland and Harrods Christmas department, and no doubt relieve my bank account of some pennies!!

I've really been suffering with joint pain recently, caused by the Omalizumab injections. The knee pain has gotten so bad that when I kneel down, I need to hold on to something to help me stand up. Also, the longer I walk around, the stiffer and more painful my knees and lower back get :( There are other side effects too (mouth ulcers, finger and toe joint pain, headaches, indigestion) but I can ignore those as they seem to ease off, the knee and back pain is persistant and seems to be getting worse.
I had an injection a few days ago where I mentioned this to my respiratory nurse. She thinks that the side effects are outweighing the very small improvement in my asthma, and wants to talk to my consultant before I'm due my next dose. I'm due to see my consultant in the new year anyway, a few months back he told me that he'd taken some of his patients off Omalizumab as their side effects weren't worth the negligable improvement in their asthma, sooooo it looks like Omalizumab isn't going to be my miracle cure :(
On one hand I don't really want to take a medication that is causing me so much pain without any noticable improvement in my lungs, on the other hand I had high hopes that this medication would help me - help both my asthma and my fight to return to nursing, so this is all rather disheartening.

Quiet

I've been feeling a bit down recently hence my lack of posts, I don't want to turn this blog into a place where I only moan and whinge.

In a nutshell; stupid lungs still aren't happy. My joints are incredibly painful, worse in my back and knees (thanks Omalizumab). I'm still not back at work, my manager is giving me vague answers when I ask what is going on, last week I saw my job advertised. Blah blah blah.

******

Christmas is coming, yay! I've finished making my christmas cards and finished my christmas shopping. Every year I do my christmas shopping in November and this year I vowed to wait until December so I could enjoy the atmosphere to present shopping near Christmas. However, it would appear that I just can't help myself, I love buying Christmas presents, and I suppose if I'm honest, I hate hugely crowded shops in December time!
Christmas tree has gone up! I know some people think it's stupidly early but Christmas is my favourite time of year, maybe it's a family thing as my parents and cousin have also put their trees up today :-) I also use the 'excuse' that tomorrow is the first Sunday of Advent.
I'm very much looking forward to visiting various christmas markets over the next few weeks :-D

I'm so incredibly jealous of all the people who've had snow! I remember when I used to live in Birmingham we got so much more snow than I see living down here in the South West, also the snow is never as deep down here. Snow is very pretty to look at but I hate it when it turns to mush and ice, and driving in it is horrendous. It's certainly been cold enough for snow though, I cleverly didn't take a scarf out with me earlier, my stupid lungs aren't a fan of bitterly cold weather!

Strange.....

I have something strange going on, it's slightly concerning and I'm not entirely sure what to do about it.

I have my own pulse oximeter (measures pulse and oxygen saturations) at home. I used to know someone who 'acquired' certain things during her hospital stays, when she 'aquired' herself a new pulse oximeter she gave me her old one. The main reason I use it is to assure myself that it's not "all in my head" (which is an entirely different blog post to write another day!), that when I'm feeling exhausted and breathless and my oxygen saturations are x%, the way I feel is justified! I also use it as a guide as to when to call an ambulance. Well, that is the theory, I've got an awful habit of watching the numbers drop and waiting for them to go back up, then when they go back up I know I'll be okay in a few hours so I don't bother going to hospital.

Anyway, back to the point, night times have once again become a big problem for my lungs. I wake up numerous times feeling wheezy, tight chested, awful headache, very breathless. About a week ago I popped the pulse oximeter on during one of these nightly wakenings to find my oxygen saturations were 86%. Since then, every night they've slowly go lower, last night my sats were 80% at one point! During the day the pulse oximeter measures my sats to be (most of the time) > 95%. Today I was in the hospital and I checked my pulse oximeter reading against the hospitals reading, which confirmed that my probe is working fine. I also manually check my pulse during the night to see whether that correlates with the reading, which is does. Therefore, I am completely satisfied that my pulse oximeter is working correctly. I reposition the probe on different fingers, swap hands, make sure my fingers are warm and the result is the same.
Even though when I wake up I don't feel great (asthma), I don't feel AS bad as I should to have such low sats.
The obvious 'diagnosis' would be sleep apnea but I'm awake whilst my sats are that low. The pattern has been - I wake up having a huge coughing fit, get in control of my breathing, use my inhaler (I'm not allowed a home neb) and put the probe on. Eventually my sats will start to improve, but the highest I've seen them during the night is 88%.

I have no idea what to do about this. I could speak to my respiratory team but it sounds too weird, I'm concerned they're not going to believe me, but at the same time I'm fully aware that this isn't good....

It's been a while

I've felt that I haven't had anything worthwhile to write for while hence the lack of posts last month. Time for an update!

I've started training with The Samaritans. The selection process was much harder than I imagined and I was genuinely surprised to get the phone call telling me that I was accepted. Now I have weekly training sessions until December. I've had 3 sessions so far, they're quite heavy and intense but I suppose that is to be expected when you consider the types of calls that The Samaritans receive. I'm not a fan of speaking up in groups so that doesn't exactly make for a fun 3 hour training session anyway! It's all good though, I'm looking forward to completing the training and moving onto the next stage :-)

My Xolair trial is going.... well.... I have very mixed feelings! I've had 3 doses but only 2 are being counted as there was such a gap between injections number 1 and 2. I'm noticing side effects that aren't pleasant. The worst is ulcers on my tonsils for about a week after the injection, I'm sure you can imagine how painful that is! I've had daily cold-like symptoms for about 6 weeks now which is making me feel horrible. The joint pain is variable, some days even the joints in my fingers hurt and other days I don't notice it at all. I've also noticed that when I get migraines, they don't respond to my migraine medication. The migraines themselves aren't new, I often get a migraine or two a month, but they used to respond really well to medication so they didn't used to have a big impact on my life. Now, they're lasting days and I'm having to spend long periods in bed. If you've ever had a migraine, I'm sure you'll appreciate that you try to lie down in the dark, in the quiet and stay still. Having a migraine and wheezing, sneezing, coughing etc is not fun!!
Buuuut, my asthma is defintely better than it was. It's not as brittle, I'm on much lower doses of Pred and it's been a while since my last hospital admission. Another buuuuuut, peak flows have taken a nose dive over the past 2 weeks and symptoms are on the increase. I should be having the next dose next week, watch this space.......

I'm still not back at work. The drama surrounding my nursing career is no further resolved. I've given up on that making any progress this year which makes me so sad, it took me 3 years of hard work to train and now I've been out of the profession for almost 3 years :-(
My 'temporary' admin job (temporary until the nursing situation is resolved) are ignoring my emails. I admit, I could be pushing the issue a lot harder than I have been, but I think it's their job to tell me that I'm allowed back (and have been since August) considering they're the ones who stopped me from working in the first place when I 'traumatised' my colleagues by having an life threatening asthma attack/collapse infront of them. I don't like the way they've treated me, I don't want to really go back there, so if they're willing to keep on paying me to stay home then I'm going to take advantage of it. Haha I know I'm going to have to bite the bullet at some point though and do something about the situation. I've fought long and hard to not have to give up working due to ill health, and these long periods where I'm not working over the past 3 years are not helping my fight!