Just Write the Prescription Please

Well hello there!

So a little update on moi... my lung function last week was 45% and my weight is *drum roll please*..... 57kg! I swear it must be muscle I am putting on or all just on my bum which is looking bigger and bootylicious, as my waist is not getting any bigger thank goodness. Guess my strength training at the gym is doing the trick! Just call me muscle lady from now on please.... needless to say I feel quite proud of myself at the moment and may even feel a little smirk making its way on to my face.

I did start to feel run down towards the end of last week, I suspect I picked something up when I had my hospital appointment. Hospitals are the worse place for sick people to go! I started to get chest pains, coughing more, more tired and I was needing to do more insulin to keep my blood sugars down. From what I've gathered, diabetes causes a circle of sugar misery. You get high sugars because your chest infection is worsening and then the high sugars feed your infection. So I started on some Ciprofloxacin, upped my hypertonic saline and I'm starting to feel better, although I suspect I may end up having IVs but for now i'm happy to coast along (the bank holiday is coming up after all and who wants to be hooked to IVs if it can be put off?!). I'm at the in between stage: not my normal self and not ill enough to be begging for IVs just yet. I finish my last dose of Azli tonight and then it's my month off, I suspect this may be my downfall....

I only had 10 days worth of Cipro in my cupboard so asked for a prescription for four days worth to make it a two week course. Well the SHO Doctor (junior doctor) I spoke to was not happy I had started Cipro without asking anyone or telling anyone. How long have you been taking it? Who prescribed it? Is it in date? What dose are you taking? In future can you let us know so we can make a decision as how to treat you? Obviously she is new and I didn't want to be nasty, we all have to learn after all, so I was an obedient patient and answered her questions:

'I've been taking it since last Friday', 
'I'm not sure who prescribed it, I get it prescribed a lot, it was in my cupboard along which lots of other medications I have as back ups',
'yes I checked the expiry date, I think I'm capable of that', 
'I'm think it's the higher dose since I'm an adult and have two types of chronic Pseudomonas',
'yes in future I'll call the busy CF ward and ask to speak to a busy doctor to see if I have permission to take a tablet that they have specifically prescribed to use for this given situation so I don't have to wait for it to arrive in the post'

I didn't really say all that, like I say, they need to learn. Quickly if possible. Learn I've had CF for 28 years and know the protocol better than them or what works for me and I know how my body is feeling..... as you can tell, I'm not too keen on cocky junior doctors. Just write the prescription please.

What a Difference a Week Makes

I've been a very naughty girl, I ran out of pulmozyme on Tuesday and didn't go collect the prescription from my GPs until Thursday. Which meant my pulmozyme wasn't really for collection until yesterday, so I haven't had pulmozyme for almost a week. It's mostly my fault but also the GPs and drug suppliers fault for being so slow and taking 2 days to do my prescription and then 4 working days to deliver it. If I'm going to run out of something I literally have to realise a week in advance so I can get the prescription and have it in the chemist, it can be difficult to be so organised, especially when my GPs is not around the corner and closed on a Wednesday afternoon. At least I can now email my prescription requests, I used to have to drop the request off and go collect it 2 days later, why it takes 2 days to write a prescription is beyond me...

Anyway, yes I have been naughty and now my chest is feeling crappy. It could be coincidence, but it's more likely it's due to lack of pulmozyme. My sputum is thicker, darker, more difficult to shift, it sticks at the back of my throat and makes me feel sick and it sounds more meaty when I cough. I felt so tried yesterday, all day, everything I picked up felt so heavy, I feel asleep at about 9.20pm and slept like a rock last night until 10am this morning. Well apart from when I woke at midnight due to some women shouting in the street (I wear earplugs so she must have being very loud!) and a guy telling her to 'go the f**k to sleep', I live on such a lovely street!

Hopefully now I'm fully stocked on pulmozyme I'll start to feel better again. A few other issues I have been having are A) I am weeing for Britain, I can't stop! I go upto 8 times during the night! and twice during a physio session. Worried I have a weak bladder and now idea how to sort it out. B) My bones keep aching on a night, particularly my bones around where I sit and the tops of my legs. I feel like an old woman! It hurt so much the other week I was crying in pain as it hurt to walk, or to sit and when I coughed it was horrible. I ended up lying on my back with my legs up in the air to take the pressure off my sitting bones. Some pain killers seemed to help it and I had to lie on my front in bed which isn't great as I can't breathe very well when on my front! I have outpatients next week so will mention both things and see what the Doctor has to say.

I was given some interesting advice last Friday in my yoga session.... I was coughing alot during the class and afterwards the yoga teacher came over to me and told me one of the men in the class was a Doctor and suggested my cough could be caused by acid reflux (which is basically like indigestion) and to try take some gavisgon. She said she told him about me, not sure what that means, she knows I have CF but that doesn't mean she knows anything about it! But he insisted she tell me. I politely informed her I was coughing because of the mucus on my chest and I am on tablets slightly stronger than gavisgon for my reflux and there is nothing I can do about the coughing. All I want to do is go to yoga, get some exercise and mind my own business!

Pete did a 10k run on Sunday, the Jane Tomlison Run for All as part of his training for the Great North Run. Thanks to all of you that have already sponsored him but for those of you who haven't please do! Pete is working so hard to prepare himself and remember it all goes to the CF Trust who have recently had to announce they are having to put research on hold due to lack of funding http://www.bbc.co.uk/news/health-13643267 . Please click here to donate.

It's Alfies birthday today, he is 4 years old! He is heading to middle age now bless him, maybe he'll buy a sports car or something! Here he is the first day we got him



Here he is now, what a handsome boy he turned in to!

Vitamin K

I'm sure everyone has been having problems getting Vitamin K, well this is why (if your hospital hasn't already told you)...
Konakion (Phytomenadione) which is the vitamin K preparation that people with CF need to have (something to do with we can't absorb other ones) has been discontinued, which was really nice of them to do.
An alternative preparation available that we can have is available from Denmark called Menadion. They are licensed in Denmark but not the UK, however pharmacy's can import them through a company. It takes upto 3 weeks for them to arrive (according to the letter I have), which in it's self is going to be a pain. I have a nice letter to give to my pharmacy and I attached one to my repeat prescription request when I handed it in on Tuesday.
If anyone needs the number of this company to import the Menadion let me know and I'll give it to you! If this small change in my prescription runs smoothly it will not be short of a miracle! I'm sure the prescription clerk already thinks I am dodgy so this will probably increase her suspicion.

In other news, we have finally been referred to the IVF clinic regarding surrogacy, I have no idea how long before we hear from them, but at least we are getting somewhere.

Other good news is, that yesterday in the Budget it was announced that all first time buyers, buying a house under £250,000 will be exempt from stamp duty from midnight last night. Guess whose purchase should be getting completed next week? That would be us, wahoo! So we don't have to pay stamp duty, good news or what?!

Repeat Prescriptions!

On Thursday I went my GPs to pick up my prescription, I had asked her to prescribe 2 months worth of medication because with the wedding and honeymoon its likely I might not have chance to go collect some more in 4 weeks. Does anyone else think its the most stupid system? You drop your request off then you can't pick up the prescription until 2 days later. This is because the woman who does them is not actually qualified to sign off prescriptions so she writes them all out and then a doctor has to sign them, hence the 2 days of doing something that the hospital doctor can do in about 30 seconds.

So I went to pick it up and she had missed some stuff off and prescribed me some stuff for 2 months and some stuff for one month. I'd even done my own note to her with everything neatly listed as I went through my medicine cupboard, I mean its not that hard is it? What is hard is going through it all and trying to recall from my memory every single medication I am on and if they are on this prescription she has handed to me.

So I told her (very politely may I add) that she had made some errors, she asked me to go through it and write down what I needed (ahem I already did this when I handed the nice neat note in 2 days ago) then said 'ok I will have it ready for you by next week'. WHAT?! My GP's is a 15 minute drive away, its not at the end of my road. Needless to say I had to leave before I did something I could have got arrested for.

Here's an idea..... instead of having this useless woman (who I'm sure just works on reception) writing my prescriptions, why don't I write them myself and then get the doctor to sign it myself? Would save myself alot of hassle!!!!!

Anyway I took the prescription I did have (with many items missing) to the chemist and informed them I would pick it up tomorrow (Friday) so I didn't have to wait around, plus they have to order half of the stuff in.

Friday morning I sent Pete to pick up the prescription, he came home empty handed. Apparently it wasn't ready yet, it would be ready in the afternoon. Well that's useful because I would be at a wedding then! So I had to ask my dad to go and collect it Saturday morning as we wouldn't be back by lunchtime when it closes.

Saturday afternoon and thank god my dad had remembered to go collect it as I'd run out of nearly everything. Still no sign on my tobi though!! So I haven't had any tobi since Thursday morning and it's now Monday. This is because the lovely tobi people will only let the chemist buy it directly from them so it takes forever to get hold of, plus the lovely GP will only write me a prescription for 28 days worth, even though most months have 30 days in them. It can take upto a week to get hold of tobi, so if you work this out I have to wait 2 days to get the tobi prescription from the GPs (if I'm lucky she will remember to put it on the prescription), then a week from the chemist then if I have 28 days worth I need to be arranging my next lot 19 days later! I tell you, you have to laugh otherwise you might just cry!

Back to Friday morning.... I woke up with a banging headache that I could not shift through any amount of painkillers which was disappointing since I had been looking forward to this wedding. I don't think I was much fun really throughout the day, abit quiet since talking doesn't exactly help a headache. It was a lovely day and all went smoothly although the bride was late and the groom was getting slightly worried! After the meal I had a sleep for about half an hour after taking a load more painkillers and then did my physio, realising I had brought everything apart from the chamber I need to do my dnase through my i-neb, doh! The sleep seemed to do the trick with regards to the headache, only took about 14 hours to shift lol. So then I was ready to party!!! Lets say I got bungalowed and Pete and I were the last ones standing of the night, I even got everyone up on the dancefloor as it was empty for about the first 3 hours. So anyway I think I made up for my quietness throughout the day.Oh here's a tip for you, if you are hungover in the morning and feel sick DO NOT do your acapella.....

Bride and Groom (Petes Uncle)

Abit drunk....

My future father-in-law and sister-in-laws!

Halfway through my iv's!!

I'm going to attempt to tell you what i've been upto, but I may miss things out as my memory is abit funny at the moment because I'm tired!

So I've been eating alot and keeping saying 'I should go to the gym today' but then never actually done it!
I walked the dogs on Wednesday as I was doggie sitting, they got all muddy and i had to give them a bath. I was very tired and slept.

Yesterday I went to the cinema to see Bride Wars, nothing special. Are you surprised? I wasn't, but hey it passed the time. Did some more sleeping and had a big dirty takeaway curry for tea.

Today the cf nurse came to see me, Alfie escaped out of the bedroom when I went in there to get something, but nothing happened. She changed my port needle, it would appear I am now allergic to supasorb dressing as my arm was all red, lumpy and itchy. This is just great, I'm allergic to everything now apart from mepilex (which i'm not sure how to spell!), its for people with allergies and it costs quite alot, not that I care, well actually I do because it means the nurses don't carry it around with them and they don't give you loads to have as spares. Luckily I had one in my cupboard so I've now got that on, but I hate it, it comes off really easily and i don't have any spares!! I also had my blood taken from my arm for my tobramycin levels. My weight is 55.1kg, my sats are 96%. However the nurse says everyones sats have been low and she thinks it is broken, so we looked what her sats were. It said hers were 96% so I think she is right. I had a nice chat with her, her husband has cf so she is very familiar with it outside of the hospital situation and is more understanding about things.

So she went eventually and I went to the gym, at last! Obviously I'm abit nervous going to the gym when my port is accessed as everyone can see it and I'm scared they will stare. Anyway once I got there and accepted people were not staring (or trying not to, I saw a few) and i wasn't the freak show for the day, I started to play with their minds abit, like picking the dressing and twisting the line etc. In sick Gemma's world I get a good sense of satisfaction knowing I might have freaked someone out :o) My choice of music to workout to today was Lady GaGa's album, its great! I did kind of feel abit weird whilst exercising and nearly fell off the treadmill, but I didn't thank god! I'm going on the treadmill now for 16 minutes, wahoo I'll be in the Olympics at this rate! I've just had a bowl of cereal and now going to have a kip. Have you noticed a pattern to my days? I mainly eat and sleep!

By the way, I got my new prescription exemption certificate! That was quick! I did have to take it to the gp's to be signed (my pharmacy could not send it for me as I was advised) but I just gave it to the receptionist and didn't really have to speak to anyone about it. I can't remember if I've told you this already!

I'm a numpty

Well I am sorry about that post yesterday! I guess I treat this blog as a diary so just write what I'm feeling etc. when I want to and sometimes it's not very good reading for you guys so sorry about that, but it does help me to express myself and get it out of my system, better I moan on here than go around in public with a face on. You could say my blog is my online therapist :o) It also helps because I read it over later in the afternoon and thought 'Gemma you are a numpty for feeling so sorry for yourself!'. I did however have my mum on the phone worried about me! I do not do this to seek attention I swear and I don't use it as a cry out for help, this blog is kind of a story if you like of my life and yesterday I was feeling abit shitty.....!

Today however I am feeling better, not better like my cf symptoms have disappeared and I am cured (I wish!), more than I am feeling positive and have told myself to cheer up because things could be worse!
Yesterday I did some cleaning in the end, I vacuumed, did some washing and cleaned the kitchen. I then just watched TV, firstly I watched my DVD I got for Christmas 'The Other Boleyn Girl' and then some of 'the Tudors', so I had a Tudors afternoon and I quite enjoyed it. The Tudors is sooo much better than The Other Boleyn Girl, the costumes, the settings, the details but obviously a film has to skim over alot of details, I have read the book the film is based on and that is bloody brilliant and goes into so much detail.

Today I went for my hair doing, I went in about 10am as my mum said I could go in abit later. I took the guy who does my hair a big piece if chocolate cake because he always does my hair for nothing without a grumble (well maybe one or two) so I thought I'd give him some of my cake! I also called my gp to arrange another sick note which he is going to give me for 8 weeks so that's it now I don't need anymore to claim my incapacity benefit. I also asked him about my medical exemption certificate and he said if I went to the chemist they could get it signed by a doctor for me?! So I'll let you know if this happens or if my GP is crazy.

I then went to the hairdressing wholesalers to get some more mousse for my hair, it's so much better than the crap you can buy from the shops and the cans are massive and last me about 6 months and they are only about £4! I also got some purple nail varnish for Saturday, because I will be wearing my purple shoes and a purple necklace, so I'm going to be all purple and black because my dress is black. I'm now at home watching some more Tudors, I'm addicted again! I also started my tobi nebs again on Tuesday because I've finished my months gap (I do them for one month then have a month off), hopefully these will make me feel abit better before I start my iv's. I wasn't going to bother since I don't do them when on my iv's which I'm starting next week, but thought it might help improves things.

Meh

I'm starting to wish I had agreed to go on my iv's this week, my lungs are killing me. I just don't think I'm going to go outside today because the cold hurts too much. I'm tired too and achy, yesterday I also had something wrong with my gut and lets just say I bonded with the toilet alot. I got woken up this morning by the stupid washing machine in the flat above, this is why living in a flat sucks. I know it wasn't early or anything (10am) and they have a right to do their washing, I'm not saying atall that it is their fault, but that doesn't stop it pissing me off!! It's nearly 12 and all I have done is my physio and had some crumpets and hot chocolate, I thought some food might make me abit more energetic but it has not worked. You could say I am feeling sorry for myself and I guess I am, I really want to go out on Saturday. I have made it clear I am not doing much walking and so we have to go to bars close to each other, but what about getting taxi's and stuff? I will wear a coat and gloves etc, I always do but when it's this cold it doesn't really do much. I'm just annoyed at the moment I guess, the flat needs cleaning and I need to do some washing and I can't face doing it. Argh!!! Stupid cf getting in my way, I wanna get my hair done (just cos you don't feel well doesn't mean you should let your looks go, you will feel even worse then!) but I will have to go in first thing tomorrow morning which means getting up early, I shouldn't moan, after all I get it done for free!!

So yes I'm down in the dumps, I wish I could just put up with stuff and not moan cos I feel like I moan all the time and it doesn't help anything! I'm sick of people saying I look hungover, do i care what you think! And no I have not got the flu thing that is going around. Mind your own business!

Just to make matters worse I have realised my prescription exemption certificate thingy runs out at the end on January and so I need to get that sorted and so need to get a form and I guess try to get my GP to sign it. I'm tempted to just pay the £100 a year for my prescriptions rather than having to go to my GP'S to try to get them for free. People with cf do not qualify for free prescriptions automatically, we can if we have diabetes (which I don't) or if we have a permanent fistula requiring dressing as these are some of the criteria. So I will try get around this because I have a port although techinically it doesn't require dressing ALL the time. If your on income support you get them for free too but I don't qualify for that either cos Pete earns too much money.

Just thought i'd add this on, read it in the paper yesterday and it made me smile
http://news.sky.com/skynews/Home/UK-News/Devoted-Dog-Owner-Marc-Greenhalgh-Saves-His-Pet-Jarvis-From-Frozen-Lake-In-Manchester/Article/200901115198087?lpos=UK_News_News_Your_Way_Region_6&lid=NewsYourWay_ARTICLE_15198087_Devoted_Dog_Owner_Marc_Greenhalgh_Saves_His_Pet_Jarvis_From_Frozen_Lake_In_Manchester

half way through iv's, yeay!

The nurse came out to see me yesterday, they always see me half way through my iv's to check up on me and change the port needle. She brings a big tool box with her full of all the stuff she needs. She did my weight (56.3kg), temperature, oximeter (96%) and then asked me some questions such as side effects im having etc. I had done her a sputum sample that morning to take back with her to give to the physio to continue being experimented on. I told her about the blood in my sputum, she said if I cough up more than a teaspoon of blood I should ring them, I haven't coughed any up since, so it's ok for now. She then took some bloods from my port needle and then took the needle out. When the needle is removed I have to push the heparin in as she pulls the needle out, this creates positive pressure and should stop blood coming back into the line so prevent clotting, something like that anyway. Anyway the end is result is, im pushing stuff in, the needle comes out, I spray heparin all over myself. She found it quite difficult to get the needle out, suppose its better than finding it difficult to get it in! Heres a picture of the needle, its abit bent which it is supposed to be, this helps it stay in better (abit too much sometimes!). She then cleans the area and puts another one in. The reason the needle is changed weekly is to help prevent infection, personally i think they secretly like inflicting pain upon me!

Poor Alfie had to be locked away in the hall whilst she was here, he was whimpering bless him. I didnt close the door on him, I pulled my physio table across the doorway (on its side) so he could still see me, physio tables can be very handy and be used for many different purposes!

Today I went to collect my prescription from my gps and went to the chemist (is it that time of the month again already..?). When I arrived at the chemist it was nice and empty. I usually drop the prescription off and collect it the next day so that they can order things in they dont have etc but i'm running low on alot of things so I said I would take with me whatever they had today. Then people started coming in and all 3 members of staff were doing my prescription, people kept coming in and there were 10 people waiting including me. Everyone was waiting for about 15-20 minutes, the pharmacist even asked one woman if she could come back to collect it tomorrow as they were very busy. Finally my prescription was ready and they handed it all to me in big carrier bag, I could feel everyone giving me evils as I left..... It's not my fault!

I came home and sorted out my drugs cupboard as it is very unorganised, ive got all kinds of stuff in there like steroids from last year (for my cf of course, not body building) and about 20 ventolin inhalers. I kept the steroids (maybe i'll sell them on ebay..... just kidding!) but chucked some of the inhalers because they were out of date or on their way. Its all tidy now, see how long it stays like that!

I was supposed to be going out for a drink with 2 mates tonight. They have both cancelled on me because they are ill! Makes a refreshing change me not doing the cancelling! One of them has epilepsy and thinks she might be heading towards having a fit. I said we would look a right pair in the pub, me with a needle in my arm and her fitting! The other friend has some kind of stomach bug and has been vomiting all day, so probably best I don't go near her! So I think i'll let them both off for having valid reasons!

My secret drugs stash let me down

Well im starting the feel abit better, the first few days of iv's are always a bi*ch! My cough seems to be calming down abit but i'm still very productive when I do my physio, perhaps even more than I was and last night there was quite alot of blood in my sputum which is worrying because that is unusual for me. Im still achey but not as much but now i've started to itch so have been taking anti histamines. The nurse called last week to see how I was doing and I told her I wasn't too good and achey and my lips felt funny. She said the colomycin makes peoples lips tingle and if I continued to feel achey to call them, she is coming out to see me tomorrow so i'll just tell her then.

On thursday night I sat down to have my pie and chips and my pot of nutrizym had run out so I went to my drugs cupboard, come on everyone with cf must have one of those, a cupboard full of tablets!? Heres a picture of mine, it has two levels. The bottom level is the stuff I use, the top level is spares, supplies etc.

So anyway I went to get another pot of nutrizym and there were none! argh! I rang my mum to see if she had some, she only had some that went off march last year. So I had my tea with the two nutrizym that were left in the pot (I should of had 4 at least). The next day I had cereal with no tablets. I called the doctors and practically begged the prescription lady to write me a prescription, she agreed but it would only be ready for 2pm. So I had lunch with no tablets, whats worse is I had a pub lunch because Pete took me out so it was a big meal. So then we got my prescription and then I had to pray the chemist had some in stock otherwise I was in for a crappy weekend (literally, haha), luckily he had one tub hidden away. Yeay! I was saved! Anyway Saturday came and lets just say that I believe the doctors when they say I need to take tablets with my food, our bathroom was one smelly room and our toilet...ask Pete I think he is traumatised. Too much information? I'm sorry, i'll say no more.

Last night we went out for a meal with my family, it was a farewell meal as my little brother is moving to university next saturday, he is going to Hull to study Geography. My other brother is now going to an only child at home! It's going to be very quiet in that big house!

I'll leave you with this funny story. My mum was explaining to one of her staff about my cf and why I need iv's etc. I was sat there at the time, listening about my mum talking about me, its quite interesting! She asked can't I get some new lungs? My mum told her that there is abit of a shortage in spare lungs and mine aren't that rubbish yet plus there are risks with getting some new lungs such as rejection. She then asked 'well can't she just go private and get some?'. Oh how we laughed, why didn't I just think of calling BUPA? Silly me!

Whats that got to do with the price of fish?

Hehe, Pete said this to me when I was giving him a reason to set the table, and I thought it was funny so have put it as my title, since I think it's pretty catchy. I keep saying it to him now!

I've had a busy day today, I had to get up pretty early to go to Sheffield to have my crb check to get onto the teaching course I'm hoping to go on. Sheffield is about 30-40 mins from where I live on a good day, it was a nice sunny day and I drove with my shades on and Girls Aloud on and then the Spice Girls! Im such a pop girly girl. Didn't have the roof down though as it gets too windy on the motorway.

I then took Alfie for a nice long walk, I think all this walking is doing me good. I can go further now before I get out of breath! Then I went to get my repeat prescription from the GP's, I took it to the chemist which is where I realised they has missed off my Dnase. So I had to ring the GP's up and they are arranging for me to collect the prescription tomorrow, its a pain though because now I have to go back and it's not exactly around the corner! How can they miss something off that I've asked for?! I think they think that if they miss it off I won't notice and they can save abit of money....yeah right! My Dnase is like one of my most important medications!

When I got home there was a car in my parking space! Its clearly marked which my flat number and all the spaces are private. Some guy who I had already had to stop for so I didn't run him over was walking towards the car so I had a go at him, he wouldn't go park on someones drive would he?! Whats the difference? This has happened before and I parked behind them to block them in, I ended up in abit of an argument but I think I got my point across!

Picked up Pete from the train station in the afternoon, he got me a present! yeay! He got me a milka chocolate bar (yum) and a flannel that's like a glove... thanks Pete..... It's a good job I love him! I had a nice kip in the afternoon after I had collected my lover! Here is a video from Petes holiday that I found rather funny, beware he swears because he is drunk! He also attempts abit of french...

Then I went swimming this evening, it was fun! There were 3 lanes, fast, medium and slow. Guess which lane I had to go in? yes the slow one, and I think I was the slowest of the slowest! My friend went in the medium lane but kept asking me if i was OK lol. She even told the lifeguard I had cf and to keep an eye on me, I could see them chatting and looking at me! I used a floaty thing so that I didn't drown from getting out of breath and just concentrated on using my legs. We did it for about half an hour, my chest was feeling very tight towards the end. I'm going to get a discount card which I can get for free because I'm disabled which is good. I must say I look very attractive in my swimming costume and with my swimming cap on....not! Hence why I have not provided a picture! I didn't have my physio today as I thought I would be swimming when I normally have it, but I ended up going later. My justification is that swimming is kind of physio!