D is for Disappointed!

Last Friday I finished my stint in Harold's Cross.  I spent 3 weeks in the place and when I finished I didn't feel one bit better than the day I limped in.  They just kept giving me the same useless medication and all the tests and xrays I had came back clear so they came to the conclusion that I "just have Fibromyalgia".  Like that's a bloody walk in the park or something!  I was so upset after the doctor came to see me on my last morning, I was told to keep taking my medication and to come back to see him in 6 months!!!! I asked was I just supposed to put up with the pain and he didn't answer me.  I worked so hard in the gym and the pool for the 3 weeks and I was so disappointed that I didn't feel any better.  People were telling me that they knew others who came out feeling like a brand new person and I guess I expected to feel the same. 

I feel guilty that my husband has wasted his whole year's holidays for nothing.  I know he had three weeks of quality time with the kids and he enjoyed his time with them but I really feel bad that there wasn't a positive result at the end of it!   

I did make some new friends though and there were 2 other women from my town in at the same time as me and we have joined aqua aerobics together to try and keep up the work we did in the pool at the hospital and also to get some time to ourselves, which I was told was very important.  But we all know that if you have kids, there is no "me time"!  It just doesn't happen! I'm lucky if I get 5 minutes to lie down and just close my eyes and not have to referee or break up an argument between the boys!

I went back to my GP yesterday and explained the situation so she has given me some stronger painkillers to take on top of the ones I'm already on so hopefully they will help me!  I really think it's ridiculous in this day and age to expect people to just put up with being in pain!  

I'd really love to win the Euromillions, I would donate most of it to cancer research, psoriasis research and Fibromyalgia research!  There HAS to be a cure out there for all of these things!! 

On the makeup side of things, I haven't bothered with it much at all lately,  I'm fed up making an effort to wear it and have people tell me that I'm looking great when inside I feel like a china vase that has been smashed into a million pieces!  I'm trying to hold it all together but it's just so HARD!  

After my last blog post, I was sure that I was going to feel so much better coming out of hospital, I just felt so deflated when I left and I actually bawled my eyes out and left without saying goodbye to anyone.  I couldn't talk to anyone without my voice wobbling and to be honest although it's a week now since I left I'm still REALLY annoyed and upset over the whole thing!  While I was in there I was always positive and had a smile on my face even though I was crying on the inside with the pain.  Maybe that's what went wrong, maybe because I put on a brave face they didn't understand how much pain I'm in.  I'm used to getting on with it, I can't exactly take to the bed if I'm having a painful day because who is going to look after the kids and do the cooking and the cleaning and everything else that needs to be done!  

But, I suppose it's onwards and upwards from here, I'm just going to have to put up with it and get on with my life the same as I always have.  Nobody is going to do it for me and that's that!  

Thanks again to everyone who has been keeping track of my rollercoaster journey, it's really appreciated!  My twitter friends are great and all give me so much support, I'm really thankful to you all!

xxx

2 weeks of poking and prodding!

Yesterday morning myself and G got up at stupid o'clock (also known as 5.30am) so I could be in St Vincent's Hospital at 8am for my appointment in the bone and joint clinic.  Thankfully the traffic wasn't bad and we got there at about quarter to 8. After checking in at reception we took a seat in the inner sanctum and I was the first name called.  On my previous two visits I had seen members of Prof Fitzgerald's team but never the man himself so yesterday I had the pleasure of meeting him for the the first time!  

He ran through my history and asked me lots of questions.  Then I had to lie up on the bed and he put pressure on my joints and by god did he lift me out of it in several places!!  I got dressed again and he told me that he was going to recommend I was admitted to their rehabilitation unit in Harold's Cross to try and get to the bottom of my situation. They have all kinds of treatments and specialists so he said I will be in great hands. He said that I have all the symptoms of Fibromyalgia but the medication I'm taking every day seems to be doing nothing for my pain and it should be helping. The good news is that it's not as bad as arthritis in the way it affects your joints and it's not going to kill me, you can read more here if you are interested  in learning more about Fibromyalgia http://www.arthritisireland.ie/go/publications/information_booklets/living_with_fibromyalgia/living-with-fibromyalgia. I asked him how long would I expect to be in for and he said that it would be for 2 weeks, Monday to Friday.  I'm waiting on a phone call but it's looking like I will be going in before christmas.  It's going to put a lot of pressure on both G and myself but it has to be done!

After I had seen Prof Fitzgerald I had to go get some more blood taken, I'm really not going to have much left if they keep taking 6 tubes of it every time I visit the hospital, and luckily the queue wasn't too long because sometimes you could be waiting there FOREVER! 

I'm going to be bringing my laptop with me so that I can Skype the boys every night before bed and also so I can keep up to date with the outside world so I will be looking for any dvd/book recommendations and any interesting websites to help me pass the time!  That's when I'm not being poked with needles, doped up on new medication, being electrocuted (I'm hoping that part of the booklet doesn't apply to me!!!!) or swimming!  

Fingers crossed they will be able to get things under control for me soon and I'll be sure to keep you all updated on my progress!

Life is a rollercoaster!

I'm not going to apologise any more for not posting very often.  I have 2 kids and they take up an AWFUL lot of my time.  There isn't enough hours in the day for everything that needs to be done but that's just life, isn't it!!

Anyway, I started this blog as a way of showing people that they could look good even when they were going through hell and looked like Fester from the Addams Family.  I still wake up most mornings, look in the mirror and see an ugly, scary witch looking back at me! I always feel slightly more human once I've done something with my hair and makeup and I always feel ready to tackle the day ahead. I know I haven't done a post involving makeup in a LONG time and I'm going to try and get back into it now that I've gotten my new laptop but the way I'm feeling at the minute I just don't feel like doing anything any more! I'm not going to start moaning and complaining because I've done more than enough of that over the last couple of years and I'm just going to do my best to push through the pain and carry on as I have been doing for the boys sakes.

Its hard to describe the way I feel at the minute, I do my best to stay positive and be happy and do what I always did. BUT, and this is a big but(t?), I worry about everything now.  I worry about every single ache and pain, every headache, earache and backache.  And don't get me started on the boys, I'm afraid they'll fall down the stairs, get hit by a car, break a leg, wake up one morning covered in psoriasis (one of my biggest fears) or any other numerous things.  I feel like the last couple of years has made me a nervous wreck and I'm always AFRAID.  I don't want to be the mammy who's always shouting at my kids not to be running and jumping and making noise, they're kids and that's what they're supposed to do.  I spoke to my GP about it and he prescribed me some tablets but after taking them for a few weeks I was no better so he told me to stop taking them.  It's hard to know what to do, I try to relax and not be worrying about things but it's just so hard to do! I've always been a serious person but after being with G (who is a big messer!) for 15 years I like to think that I have relaxed a bit but I just can't stop worrying about things! I've always worried about everything and anything and I don't think that is going to change any time soon!

I know I'm starting to ramble a bit now but I just felt like letting my feelings out and if you can't do it on your blog then where can you do it?

I read some of my first blog posts and remembered things that I had forgotten about myself.

I AM STRONG.  I AM POSITIVE.  I AM ALIVE.

I shaved my head in front of hundreds of people to raise money for charity.  I didn't care about what I looked like or what people thought, I was only thinking of raising as much money as possible for causes close to my heart.

When I was bald and eyebrowless I got up every morning, painted my face and got on with my day.  As soon as I had enough hair to cover my head I stopped wearing my wigs.  I didn't care about the whispers in the school yard because I had gone from long hair to no hair.  I just didn't give a crap! Let people whisper!  I had hair and I was PROUD!

I learned exactly what my husband and kids meant to me.  It broke my heart to be stuck in a hospital for a week when all I wanted to do was give them the biggest squeeze possible and I was so happy to get back home to them.

I realised how much my husband loves me.  A man who will shave your head for you and still stay strong even though my sister told me later that she could see the tears in his eyes while he was doing it.

I'm crying now as I'm typing this but you know what, it feels GOOD to get it out of my system!  I sometimes feel like I bottle things up and don't talk enough.  My hubby has enough on his plate between bills and work and stuff and I really don't like burdening him too much about my feelings!  He's always there for me but I never let it ALL out because I don't think I'd ever stop!

I know that there are always people out there worse off than you and my heart breaks every time I see someone I know getting more bad news.  I am an emotional person and it doesn't take a lot to make me cry these days.

People say "Oh you're so brave, I wouldn't be that strong." I say that's lies.
Anybody who is diagnosed with cancer CAN'T  just lie down and give up.  Life is worth fighting for and you have to fight until you take your last breath because I know for certain that that's what I will be doing and I don't intend on doing it any time soon!

You do what you have to do to stay alive... if somebody told me in the morning that I needed another mastectomy and needed my ovaries out too then I would have absolutely no problem with that.  I don't know when/if the time will ever come for that but I'm ready for it all the same!

But you know what, I'm going to carry on, have some chocolate,keep my double chins up and live my life, one day at a time!

Thank you for staying with me through this journey, it really is a rollercoaster!!

Pics, pics and more pics!

Hey everyone!
Hope you're all doing good! Or at least better than I am at the minute!  Still trying to get my pain under control, I've been to my GP several times and he keeps changing my medication to try and find something that will work for me but its looking like I will have to be admitted into hospital at some stage to try and get to the bottom of it because the painkillers they have me on should be working but they're not!
Anywho, I thought I'd post a quick photo update of the last few months because you don't want to be listening to me whinging away now, do you??!!

Aaron the ninja! He loves Halloween!

Aaron dressed as Mario in last years costume!

Aaron wearing his cousin's Luigi costume!

My Halloween look! Everyone kept asking if I was wearing a wig!

The beautiful dolphins we seen on holidays. I had never seen them before and I know its cruel to have them in captivity but they are just fantastic creatures!

Birthday cake I made for my niece's 7th birthday a while back! 12 hours of hard work! G made the Moshi figures!

21st Birthday cake I made for my cousin, 13 hours work!!

So there's my quick catch up!  I'm going to try my hardest to blog more often, if I end up in hospital I'll have plenty of time on my hands so watch this space!!

My 100th post!!

I realise that I'm not your average blogger. I don't post all that often (almost 2 months since my last post in fact) but the truth is that i just don't have the time or energy for it any more!  In my last post I said that the doctors had told me that I could have psoriatic arthritis but in my visit last month they told me that i don't have arthritis but have fibromyalgia instead. Everyone keeps telling me that its a good thing that i don't have arthritis but it still doesn't make the pain any easier to manage or cope with. I've really felt like crap the last few months and even with all the tablets they've put me on I still seem to be in a lot of pain and not getting a lot of sleep. I'm actually going back to my GP this afternoon because I'm not due back to hospital until November and i just can't put up with being in constant pain for another 2 months.

The worst part is that I feel bad for complaining at all. I've been through a mastectomy, chemo and all the other crap that cancer throws at you and I've come out the other side. I'm alive, what right have I got to complain? I should just be happy to be here!  But the truth is that the pain I'm in now is worse than any pain I've had in the last two years and I am just sick of it! You are there telling doctors that you can hardly walk, push your son in his buggy or even manage to do a bit of housework and they look at you as if you're lying!  I can't peel potatoes or veg any more, I've dropped hot saucepans and burnt myself because I can't hold anything heavy any more, the list just goes on and on!  I know there are a lot of other people out there that have this horrible condition, I'm by no means the ony one with it, and live each day in constant agony.

Anyway, thank you to everyone for sticking with me through this mad life of mine and hopefully my 101st post will be a bit of a cheerier one!  I know I haven't done anything makeup related in a long time but I haven't bought anything in ages and at the minute I'm not really bothered with it at all so I'm just filling in my eyebrows and putting on some mascara every day and that's about it!

PS.  If any of you have fibromyalgia, or know somebody that does, I'd love to hear from you!

Gold Medal Award! Another catch up post!

Seeing as the Olympics is happening at the minute, I thought I would award myself with a gold medal for the worlds worst blogger event!!!  I know its been absolutely AGES since I posted and half of you probably think I'm dead or something but I'm still here and in one piece!!

My nipple reconstruction went really well and I've healed up quickly as I always have before but unfortunately my nipple has almost flattened completely and I was warned that this could happen so I was half expecting it really because anything that can go wrong usually does when it comes to me!!  I'm due back up to hospital in a couple of days for my 6 week check up and if they ask if I want to try the operation again I don't think I'm going to bother.  I've coped with one nipple for almost 2 years now and don't really see what difference its going to make, I really don't care either way to be honest!!  There are more important things at the minute!

I attended the spondyloarthropathy clinic (bone and joint clinic, its a real word, I promise you!!) last week and went through all my aches and pains with the doctor.  He examined all my joints and read through all the blood results and xray results that I had brought with me.  He said that he thought it was Psoriatic Arthritis and called in one of his colleagues to get a second opinion.  Of course, his colleague DIDN'T think it was Ps A, he thought it was something else and ordered more blood tests and xrays of my hands and feet.  I was told to come back in a month and we'll take it from there!  I'm really in limbo at the minute, the anti-inflammatories my GP gave me aren't doing much to kill the pain and its really gone painful walking anywhere! I'm walking on the outside of my feet as leaning on them hurts like hell and my back is absolutely in ribbons!  My hands are gone really sore and even things like pushing the buggy are agony, peeling veg and stuff is horrible too!  I know I shouldn't be complaining because I know that other people out there are going through much worse but its just so awful and I really feel like an old woman at the minute!!  

I haven't been doing a lot of baking lately, have made a few cupcakes here and there when my hands aren't so painful but I think my days of spending 8 hours on a cake are well and truly over!!

Here are some recent photos of what has been going on;

Michael and Michelle on their wedding day!

Me and my lovely hubby!

Cait, Michelle and me!

Me and Michelle, we've known each other since we were about 8, she's standing on a chair here!!

Hair growth update! July 2012

Aaron getting his full yellow belt in Eagle Martial Arts from sensei Julie McHale

Aaron and Ryan!

Thats about all for now, just wanted to check in with everyone and keep you up to date!

Health Update - 28th June 2012

Hey everyone, I hope you're all doing well and enjoying the lovely "summer" weather we're having!

I had my nipple reconstruction done almost 2 weeks ago now and i got the bandages off a week ago. I'm actually really impressed with the job that they done on it and i can't wait now until its all healed up and I can get it tattooed! I'm not going to be posting before and after photos or anything like that but its a welcome change after having a patch of skin where I used to have a nipple for the last 20 or so months! I was a bit sore for a few days afterwards even though my boob and armpit have been numb since my mastectomy so I had to take plenty of painkillers! The morning of my surgery (which was Friday 15th June) I got up at 4am and got the 5am bus to the hospital. G followed me up in the car when he'd gotten the kids off to school etc. I had brought a book so had plenty to keep me occupied while waiting to be called for surgery. One of my plastic surgeons team came around to chat to me and go through everything with me. She was marking me up when she spotted my "thumb print" scar (that happened when i was burnt during my mastectomy) and asked me if I'd like it made smaller while I was having the nipple done. Of course I said yes!I went down to theatre early enough and began worrying about what I always think is the worst past of surgery, getting the cannula in my hand. I HATE needles and i get so nervous when I start thinking about being stuck with one. I start sweating and my heart starts racing! A nice nurse gave me some numbing cream so that it wouldn't hurt as much to get the needle in. My last 2 surgeries I've been brought straight into the theatre to be put to sleep but this time I went into a little "anaesthetic room" to be knocked out. There was the nice nurse and a female anaesthetist who were really lovely to me and were chatting away to me to distract me while the male anaesthetist was slapping the hand off me trying to get a good vein! He finally got in it and they hooked me up to a drip but they had to wiggle it around to get a good flow (ugh!) and thankfully they didn't have to redo it!Then I was given some oxygen and next thing I knew I was in recovery! I think I was out for about 90 minutes or so. I was brought back to the ward and about 3pm I was given some toast and told I could go home. Isn't it funny how the toast you get after fasting just tastes like the nicest toast EVER??? G was up in the waiting room so we walked down to the car and headed home.

I've been complaining of pain in literally ALL of my joints for a long time now. Last summer I went to the doctor and was given a box of 100 painkillers. I only took a couple of them because I didn't want to end up addicted to them or something! While I was having my light treatment last summer, I told my dermatologist about the pain and he told me that he would refer me to a bone and joint specialist, its a spon something or other, I can't ever remember it, and i eventually got an appointment for the end of July this year. The last few weeks though the pain has been unbearable and i was really starting to worry that it was something bad so i went to my GP the day before my operation and he told me that I'd need blood tests and an Xray. I had Googled my symptoms (as we all do!) and came up with psoriatic arthritis, which is a form of arthritis that people with psoriasis get. The GP said the same thing so i had my blood tests done a few days after my surgery and went to the local health centre to have my xrays done. I had to sign the form to say you're not pregnant and it always annoys me when i have to go explaining that u haven't had a period in over 2 years because of chemo and hormone tablets. My hands were xrayed first and then my back. I had to lie on my newly formed nipple which was very uncomfortable but I didn't want to have to go telling the radiographer ANOTHER part of my life story so I laid there and said nothing!

2 days later the doctor rang me to say yes, I do have psoriatic arthritis. He said that he was waiting for some of my blood work to come back so I'd have to come down and see him in a week or so and we would have a chat about what to do next. I told him that I was due to see a specialist anyway so at least the timing there worked out well! He asked me if i had enough painkillers to keep me going til i came down to see him so I told him I had a box of them!I'm going back to see him in the morning so i'll let you all know how it goes! The pain is really awful, my hands, feet, knees, hips, shoulders and basically everywhere hurts like hell and now its starting to hurt when I try to make a fist too so it hurts to pick things up. Walking, and especially pushing Ryan in his buggy is agony. I keep telling G that I'm going to end up in a mobility scooter before long! Wouldn't you think I've been cursed enough for one lifetime already?  I got the phone call from my doctor while I was bussing it up to get my dressing off, of course that had to cause me hardship too! The bandage got stuck to a scab or something to I had to lie there while they let it soak and then the doctor came in and whipped it off!! Good job I can't feel anything there any more eh!?  On my way out I met the female doctor who had suggested making my scar smaller, its now half the size it was, and i thanked her for suggesting it! She got me to show her and agreed that it looks much better so THANK YOU for that!

If you've managed to read this far without falling asleep then congratulations! Myself and G are heading to a friends wedding on saturday so its the first wedding (apart from our own) that we've been to in about 5 years so it will be nice to catch up with some friends and neighbours for the day!

I was asked by the lovely Karen from Lovely Girlie Bits, who works in the hospital, to do a guest post on her ever so popular blog a while back so please feel free to check it out! Here's the link! http://www.lovelygirliebits.com/2012/06/guest-post-by-jacinta-full-moogoo.html

Once again, thank you to everyone who reads my blog, I really enjoy having a place to let off steam and get everything off my now 2 nippled chest! ;)