How lucky I am

Hi Blogsphere,

Sorry for abandoning you for so long, it's been a whirlwind of a few weeks.

So this blog is dedicated to My lovely Mum as it's Mothers day tomorrow. My Mum is a very special person, I really couldn't ask for a better Mum, she's not only my Mum but my friend. I know she'll support me in everything I do and every decision I make. She, as always, has been such a support over the last few weeks. We've not had it easy over the past 18 years or so, our little family seems to go from one challenge to another. But that has made us a strong family. Mum's kept us all in one piece, I really don't know how she does it sometimes, it's often just a look or a much needed hug but she manages to fix so many things just by being Mum - so happy Mothers Day Mum  x Love you.

This week has been quite a challenge, i've found myself struggling to pick myself up this week. I'm really trying but it's been quite a challenge, i've just found that my moods been really low. I've also been exhausted. If you ever get the chance google (other internet search tools are avaliable!!) The spoon theory. It really does explain what it's like having a disease like PH. The basics are that you start each day with a certain amount of spoons, you use a number of spoons to be able to do tasks throughout the day. It shows the need to use your given spoons wisely each day. Well this week I have not used my spoons as wisely as I probably should have, but I had fun. Usually I store my spoons for work cause even though I just sit at my desk I need energy (or spoons) to concentrate and use my brain. This week however I've been out every night after work so my energy levels have slowly been depleting all week. I ended up on Friday completley exhausted. So today has been mainly spent sitting recharging my batteries.

This morning was spent watching Eternal Sunshine of a spotless mind which I haven't watched in years.

This week has been a holiday based week too. We had to pay for our cruise to Iceland & Norway (gulp). I also booked to go away with friends to Longleat center parcs. Both holidays have had there challenges in terms of my PH. We can now book the shore excursions for our cruise. Now the problem i'm having is that most of the trips go up mountains, and if the trip doesn't go up a mountain then you have to go up a mountain to get to somewhere on the other side. Now with PH high altitudes aren't particularly good as the concentration of o2 drops, making breathing difficult, and possibly causing all sorts of trouble to my insides. So i've had to check with my PH centre how high I can go before booking any trips. The center parcs holiday has also brought troubles as center parcs is a big place and you can't use cars to get around. So I have found myself giving in and i'm going to hire a mobility scooter........ but it will be good, and I won't have to worry about holding up my friends, and they won't have to worry about me walking too much. And at the end of the day it will give me more energy to drink more Strawberry vodka!!

We have a new addition to our house..... an exercise bike!! we've decided that we both need a bit more exercise (well any really). So next week once my energy levels are back up it's all change. I'm going to do some exercising, i've got a DVD with exercises aimed at people with PH. I'm hoping this will give me a bit more energy, and should give me a bit more positivity.

We've also decided to make one of the things we did this week a regular event. On Wednesday we went off to Fat lils, a local bar / gig venue, for their acustic night. We went this week as one of Joss' friends was playing. But I have to say the level of talent was incredible. So we'll hopefully be going to the once a month event from now on. I forgot how much we both love listening to live music. We haven't done it in such a long time.

Well best go blogsphere before I bore you too much. May post again soon as i'm sure I had loads of thoughtful things to say last night, but I can't remember what they are now...... and if I end now maybe no-one will notice I haven't mentioned the elephant in the room beginning with T (I promise I will mention it soon, just not yet).

Have a good week. And happy Mothers day to all my Mummy friends, whether you're Mum to human children, or animal children you're all special. xxx

From the Heart

So this week is From the Heart week on itv. The timing is perfect as i'm off to Harefield next week for transplant assessment. I thought i'd want to be avoiding all the publicity and sticking my head in the sand to try and forget about next week. But it's actually done the opposite watching Kath & Stacie on TV, and watching the tonight special has given me the courage to face next week.

The fact is I will need a transplant at some point to save my life, and ok that might not be for a while yet but it is something I have to face up to if i'm going to come up with the right decision for me.

So the organ donor register is an odd thing, people don't want to think about it, dying is a pretty big thing to think about. I don't want anyone to die so that I can live. But people do die that's the only certain thing in life. I know what it's like to lose someone close, my Dad died when I was 18 and it is an unbearable thing. But if I knew for one minute that he had helped someone else live then what a great thing that would be. Unfortunatly he was riddled with cancer and died at home so donation wasn't an option.

What if I was your daughter, sister, cousin, Mum would you want to save my life? by being an organ donor you could save someone like me.

So what's it like knowing you are likely to need a transplant, to be honest it's hard to tell you. The reason for this is that i've buried my head in the sand, it's just such a big thing to think about. It's almost too big, the thought of waiting for the phone to ring, the thought of the consequences of having a transplant, the thought of the consequences of not having a transplant, they are all too big for my brain. I really don't know how people make the decision to go on the list without going mad. Where do you get your hope from when there are so few donors?

People often say that i'm brave going through what I am, dealing with what I have to deal with, facing up to my situation. But the truth is i'm not brave I just plod along, it's the only thing you can do, anyone in my situation, and many of you readers are, would do exactly the same. You get through each day the best you can, with a smile on your face because you know tomorrow might be a bad day so you make the most of today. If you're having a bad day you smile because maybe tomorrow will be a good day.

Do you know it's 20 years since I left school this year. A reunion is being planned, do I think i'll go, i'm really not sure. My school days weren't the best, it was the couple of years after in college that I hold dear, not that I learnt much in those 2 years but I made some good friends. The thought of meeting up with people I haven't seen for 20 years and answering the inevitable questions, children, work, health etc just isn't filling me with excitment. No I can't have children, no my health is crap, no I haven't climbed the career ladder. I wasn't in the popular group at school, i'm probably the girl in the school photo who no-one apart from friends know who I am!!

I really should write this blog just before I go to sleep as I often think of inspired things to put in it then....... but when I come to write I forget what I want to say.

Tomorrow is valentines day, something me & Mr P have never really bothered with. This year though we are hoping to go to the Cinema to see Moulin Rouge, one of my favs.

Well best go blogsphere, I have Homeland to catch up on. Next blog will probably be a panicked one on Sunday xx stay safe.

painful.........

Hi Blogsphere,

Well what a week it's been full of snow. I really don't cope well with snow, it makes breathing really hard when I'm outside and I spent the week when I was outside shuffling along like a little old lady.

It was really pretty though, I just wish i'd been able to get out and about with my camera.

It's rather quiet in the Pegram household today, Mr P is suffering after a night out with the boys...... 3am he staggered in this morning.

As the title of todays blog suggests today is a painful day, and i'm feeling a little fragileafter taking coedine to get rid of the pain. For those of you who don't the cause of my pain is this:

 

 



This is my pump which is attached to me 24/7. the round plastic bit attaches to a clip on my skin on my stomach. Getting used to this little machine takes a while as you would imagine. I usually carry the pump in my pocket as the tubing is long enough. But if I want to wear a dress or skirt then I wear my Joey pouch. Joey pouch was the invention of a fellow PH sufferer, it's a pouch that attaches to an elastic wasteband. It is an invention that has made wearing the pump so much better. Living with my pump day to day has made life interesting. You get in to a rountine of where you put it when you're in the shower, where to put it in the bed when asleep. I often wake up with the pump twisted around me where i've tossed and turned in the night. I've had a fair few incidents of dropping the pump, or pulling the line out of my stomach (yes it is an ouch moment!!!). I often wonder if people really appreciate what it's like having a machine attached to you all the time. It's like having an extra limb which doesn't move on it's own. Some days it always seems to be in the way.

Anyway about once a month I have to change where the site goes into my stomach. This causes a great deal of pain for a couple of days. It sort of feels like someones stabbed you (not that i've ever been stabbed) and the knifes still in moving about, and then to add to the joy someone is pooring acid into the knife wound.......... yes it is that bad. Most of the time I out on a brave face and try and deal with it, but sometimes it breaks me, and I just end up feeling sorry for myself. I'm a lucky one though as my pain only lasts a few days, some people who've had this type of pump and medication get constant pain. Due to licensing issues they no longer offer this medication to new PH patients, and now everyone who needs constant medication have to have a hickman line, which is a line which goes straight into the heart, and the medication needs to be mixed every 12 hours. My medication only needs replacing every 48 hours.

At a later date i'll do a post of how the pump works when I have to put new medication in.

You are all probably thinking I must hate my pump, but I don't, it's like any relationship we have our ups and downs, but at the end of the day I love it........ and the reason for this is without it quite simply I wouldn't be alive.

Have a good week blogsphere, thank you for reading xxxx

And to my lovely husband, Sister, parents & friends, you're love and support gets me through the painful days xxx

24601

I can't believe it's been 2 weeks since i've written my blog..... sorry blogsphere. But to be honest not much has happened. New Year came and went and now we're back to work work work, and what seems to be recovering from working. My cold seems to be hanging on in there, and i've been very generous in sharing it around with Mum & Joss now having it.

I did make some New Years resloutions, need to lose a bit of weight, and want to increase the amount of exercise I do. It's hard with PH because my exercise ability is severly impaired. But I think a bit of Wii fit in the winter & a few light walks in the summer should help my health. My other New Years resolution is to do loads of fun things this year. Not sure what but thinking more theatre / films & music.

Granny is still unable to go home due to flood waters, but they are going down.

This times blog is going to be a bit of a film review I feel. I have watched quite a few films over the last couple of weeks as it's the one thing this disease has given me, guilt free film watching time!

Films recently watched have included Tinker, Tailer, soilder, spy which I think I lost somewhere but Joss enjoyed it. Horrible bosses which I enjoyed and was quite a good black comedy, and has Kevin Spacey & Colin Farrel in it so how could it go wrong. Moneyball was good too, Brad Pitt gave a good performance I was quite suprised how much I enjoyed it as it's quite sports oriantated.

The suprise film that I enjoyed this week was Rise of the planet of the apes, I thought it was going to be all fighting apes and action, but it was suprisingly good and it was easy to see where the Ape revolution that leads to the Planet of the Apes came from.

Now did someone mention revolution??? I've just  got back from seeing the best film i've seen in a long time, Les Miserable. It was incredible and had both Mum & Natalie in tears (oh ok maybe I shed a few little tears!!). It was such a powerful film and totally did justice to the theatre version which I saw 18 months ago (and was slightly spoilt in seeing Alfie Boe play Jean Valjean). Ok the singing isn't the same as the powerful singing you get in the theatre but Hugh Jackman was great. I felt all the female singers were compltley blown out of the water as soon as Samantha Barks as Eponine started singing, Eponine is my favourite character in the show. Not sure the character of Thenardier was quite right, but then when we saw it in the west end Matt Lucas played the part to perfection. It was really good to see Colm Wilkinson in the film too, boy can that man sing. For those of you who don't know Les Mis history Colm played Jean Valjean in the original West End production. I'm so glad Cameron Makintosh produced the film, just don't think it would have done any justice to Les Mis without him. I can't recomend going to see Les Mis enough. Although I do think eveyone should also see the West End version.

It did make me think though what do we do when we're unhappy? we moan. Maybe we should be we need to take a leaf out of the books of the french revolutionaries and do more. So in that vein I feel the first revolution should be a move towards an opt-out system for organ donation. I believe everyone should have the right to chose not to be a donor if they feel strongly about. However I feel many people aren't on the organ donor register just because they never get round to it. It's also important you tell your loved ones what your wishes are. And before anyone asks yes I am on the organ donor register and was before I was diagnosed with PH, although not sure which parts of me would be any good. http://epetitions.direct.gov.uk/petitions/38220   is the link to the e-petition if you want to add your name to the list.

I've got Evita to watch this week sometime. I promised a friend i'd watch it so I really must get round to watching it. Not sure why I can't seem to get motivated to watch it as I like a good musical.

Well must go Blogsphere, I have another darts final to watch, it's the BDO final between Tony O'Shea & Scottie 2 hottie waites. Although BDO just isn't PDC........ oh no i've become a darts snob..... xxx

sleigh bells ring

Well sorry blogsphere I have been a bit lapse in writing my blog.

Today is the 27th December Christmas has been & gone.

Well what has happened since 10th December?? it seems so long ago. I think our last story ended with the relatives about to arrive from Canada. It was a really lovely visit from my Aunt & Lisa, although was slightly mared my colds, IBS & a bad infusion site and my PH not playing ball.

While they were here we visited Granny, went out for lunch & went to Blenheim palace. It was nice just to spend time with them, just wish I could have spent more time with them.

Blenheim at Christmas

Aunty, Me, Granny, Mum, Natalie & Lisa

I've had a few infusion site issues recently, firstly I woke up one morning to find i'd pulled my site out in the night, it looked like a scene from the Texas chainsaw masacre. Then the new site I chose formed a blister, then the third site got infected. Fingers crossed the site that I now have is fine. I had a really painful Christmas Eve and was not looking forward to Christmas Day in so much pain. Thankfully Father Christmas gave me the gift of a fairly pain free day.

Christmas was also quite traumatic as on Christmas Eve my Gran had to be evacuated from her house and moved into a residential care home. We're all hoping that she settles in well as we're not sure what the future holds regarding her property and her ability to live in her own home anymore. It was a really tough decision for my Mum to make. It has lead to quite a stressful time for Mum and I'm nt sure how she got through entertaining on Christmas day & Boxing day.

Christmas day was lovely and I got some really nice pressies. We spent the day at Mum & Johns with my sister, granny, step sister her husband, his mum, and my twin nephews. Christmas lunch was fantastic as usual. We had crackers with racing penguins, which me, my sister & step sister played. my penguin didn't even get off the starting line!!!

Boxing Day was spent down in Bath with Joss family which was as always a nice day. We were hoping to see my step brother, sister in law & neice & nephew as well but my poor nephew wasn't well.

Oh well better go, darts to watch & James Wade has just started playing.

Merry Christmas people of blogsphere x

Lets.......play.......darts..........

Well what a week it's been full of highs and lows, or actually that should be lows and highs.

Last week started with the news that a fellow PH'er had had "The call". A doner heart and lung had been found for her. The whole PH community came together online to wait for news, we all care so much about each other, yes we have our ups and downs, but when we need each other we're always there. After the operation news filtered through that the operation hadn't gone as planned and the donor heart wouldn't pump unaided. An anxious wait was in store as we waited for news, we were kindly updated by the PH'ers family & friends. During this time many prayers and positive thoughts were sent out, amazingly a second donor heart and lung was found, and as I write all seems to be going well. We are all still praying and hoping for our PH friends continued improvement.

The whole thing rocked me as it just shows how serious and complicated transplants are. The day when we were waiting for news seemed to last a year. But it also showed the support that the PH community give each other, and I for one am proud to be part of our little group x.

 

The week ended on a definate high, Saturday we were Portsmouth bound, what some of you may not know is that I LOVE DARTS!!! Every chance we get me & Joss watch on TV. I've never been to a live match before (not counting watching Joss play once in the Witney & Eynsham league). Saturdays event was called the Untouchables and was an exhibition event which featured 8 players. One of the players featured was James Wade, now I have a soft spot for James Wade, one of the reasons for this is that last year he told the world about his struggle with depression, I know people who suffer from depression and know how hard it is to deal with & talk about. A few months ago James played a match on TV and he was obviously struggling mentally and I just wanted to give him a hug. Well on Saturday I got the chance, we'd paid for VIP tickets which included a player meet and greet. I was so star struck as the players were just wondering round the room and we had to go up to them and talk to them. I think I just about managed to tell James Wade I was a huge fan!! Joss did a much better job than I did (but then that won't be a suprise for anyone who knows us!). I became a fan of Co Stompe as he was really lovely, even took a picture of me and Joss with Michael Van Gerwin (what do mean who!!!! MVG one of the most impressive darts players at the moment, and going to give Phil Taylor a run for his money at the world championships next week, and if you're saying Phil Taylor who??? then there's just no hope for you!!). It was the best night EVER, well nearly ever, me & Mr P had a lot of fun.

Me & James Wade



The whole of the news seems to be full of the death of the nurse who took the call at Kate Middletons hospital. It's all very sad, I find it hard to understand that someone would leave behind their children & husband because of a mistake at work. It's very very sad.

I've just got back from a visit to Hammersmith hospital for my 3 monthly clinic visit. All went well apart from they were unusally behind today, my 11 o'clock appointment ended up being 12.35. I managed to do 408 metres on my 6 minute walk test (I still think all of my healthy friends should try and do a 6 minute walk test to see how far they get) my oxygen levels didn't change from when I started to when I finished which is really good. They don't want to see me for another 6 months yippeeeee.

Well blogsphere 2 weeks tomorrow will be Christmas day and i've still got loads of presents to buy, and I haven't even written a card yet....... oops. Tomorrow my little Cousin & Aunty arrive from Canada woo hoo, can't wait to see them.

well hello my friend.....

Warning Warning too much information may be given here......


Well Blogsphere I have to admit i'm not feeling too chirpy. Everything seems to be getting me down and I just couldn't figure out why...... until Saturday that is when a friend who used to visit monthly but hasn't visited for 2 and a half years turned up (and by friend I mean the thing that turns up for most girls on a monthly basis!!). I've recently had my implanon contraceptive implant changed so i'm guessing that's the cause.

This reapperance has made me feel really broody which in turn makes me sad. For those of you who don't know for some having Pulmonery Hypertension means you can't have children, this is because of the strain that would be put on the heart that pregnancy would cause, and this is the case for me. At the moment I seem to be in a low place thinking about the things I don't / can't have. I'm sure once my friend has gone I'll be back to appreciating what I do have. I had counselling after I was diagnosed and about the only thing it helped with is realising that it's ok to feel sad and angry about my situation, I don't have to put on a happy face and be strong all of the time. Having PH is quite frankly shit, it's not a bed of roses, it does affect my life in a huge way, and it's ok to acknowledge that sometimes. There was a post on the PH facebook page asking if anyone has bad days, the answer to this is yes, we all have bad days, I can guarantee everyone with PH has a day where they don't have the energy or breath so they day is spent in bed or on the sofa watching tv or sleeping. I wish I could describe what having PH is like but it's so hard.

In happier news I had a nice day Christmas shopping with my sister on Friday. Every year we have a girly shopping day me, Natalie & Mum. This year however Mum couldn't come as Granny has been flooded out of her house for a week now, her house isn't actually flooded but you can't get to it. We're hoping she'll be able to get back to her house early this week.

I also bought some new boots which were a bargain. I have small feet so I was able to buy a pair of childrens boots. not bad for going out to buy an advent calendar.

In other news the Christmas lights were switched on in town on Friday. They were switched on by the prime minister, as he is our local MP, apparently there was much booing and someone tried to climb over the barriers, not sure what to do.  I will take a picture of the chrismtas tree as it really is a sad looking thing.  Our Christmas decorations will probably go up in a couple of weeks time.

Just to end on a happy note here's a picture of my cat wearing a Christmas hat that stayed on for about 3 seconds, she was not impressed!!!

Have a good week blogsphere, next blog i'll be back to my positive self x