Friday, 30 November 2012

Exciting news


So I have some exciting news…
Jamie and I have just received the keys for our first house!!
It is a two bedroomed bungalow in the Holbeck, which is perfect for us. (No more stairs to climb when my feet are sore!) The ultimate selling point though, was the back garden which overlooks the whole town. Because we live at the top of a hill we can see for miles, I absolutely love it.
We put an offer in for the house back in September, just days after it had gone up on the market. It was exactly what we wanted, in the area we wanted and for the price we wanted, with no chain and we knew that it would be snatched up if we didn’t act quickly. Our offer was accepted within hours and that is when the waiting game began!
Since then we have signed endless paperwork, been to several meetings, but most of all spent a lot of time waiting! We didn’t really want to tell anyone because so many things can go wrong and it could have fallen through at any moment, so we decided to keep quiet until things were finalised and only tell a select few.
So if you asked me if I had seen any nice houses or when I was thinking on buying a house, and I either changed the subject or just completely ignored the question that is why!! I didn’t want to lie to anyone. But I can finally let the cat out of the bag!
Over the past two weeks things really kicked into gear, with the completion date in sight. It has been really stressful, I nearly didn’t make it to sign the contract because the roads flooded and I got stuck in Ulverston, then a few days later we had problems transferring our deposit for reasons out of our control, then we had issues with our home insurance because the company only faxed through half of the information to our solicitor and to top it all off, yesterday we were told that there was a problem with the boiler (we’ve had it checked and its fine, the message was misconstrued).
 All this stress hasn’t done much for my arthritis though to be honest. I have been sleepwalking the past couple of nights(which I tend to do when I’m stressed)  and I really notice a difference in my swelling when I don’t get a good night’s sleep. I have also had a really short attention span for the same reasons. But hopefully now everything is completed I will get a good sleep ready to start work on the house this weekend.
So if I’m a bit quiet over the next few weeks in the blogging world, it’s because im either scraping wallpaper off, painting walls or moving all of my belongings out of my family home!
 

Wednesday, 28 November 2012

My new addiction

Apologies for the delay since my last post, I have been rather busy over the past week with several appointments and errands to run. Hopefully I will be able to explain why in a few days, but until then I will update you all on my progress.

I am definitely noticing improvements in my condition. Firstly, I am nowhere near as tired as I used to be! I used to struggle to get past 7pm without wanting to get into bed, whereas now I am managing to make it to around 9pm/10pm before I think about getting in to bed. (Wednesday is my exception though because Jamie is at night school so I get into bed really early!)

Secondly, I can now get out of bed straight away now. Before hand it would take about an hour after I had taken my steroids before I could even think about moving, whereas now I get up straight away. I am still sore when I first get up and it does take a while to loosen up, but it is much more bearable these days. 

Sadly, my finger is still not showing any changes at all!!! I'm due an appointment with my rhuematologist doctor over the next few weeks so hopefully she can put my mind at ease and tell me that it will get better eventually. On the brightside, I have still not had any negative side effects from the medication, which is fab!

I also wanted to talk about my new addiction... walking! Over the past week I have been for 3 walks with a total distance of over 11 miles. I love getting wrapped up, turning on shuffle on my iPhone and setting out for a walk on my own. Its a great to get some head space and time alone with your own thoughts, plus the fresh air makes me feel great afterwards. I was planning to do a nice long walk tonight, but my foot has started to hurt when I got home so I am reluctantly having a night with my feet up in the hope that its better tomorrow.




Keep your eyes peeled for my next blog post... I will hopefully have some exciting news to share!



Tuesday, 20 November 2012

Improvements...

Hi everyone

I noticed a few improvements in my condition over the weekend, so I thought I'd let you all know!


Firstly, on Saturday morning, Jamie (my fiance) and I were up at 6.30am because Jamie had work. Usually when Jamie works at the weekend, he drives me home because I don't have time for my steroids to kick in before I have to drive. However, this weekend I managed to drive home 15 minutes after getting up without too much discomfort! I'm not saying it was a pain free drive, but certainly bearable, which is a huge improvement. This got me thinking that maybe I don't need to wake up at 5am to take my steroids anymore... The past two days I have taken my steroids at my normal wake up time of 6.30am and have managed to drive to work okay. So no more 5am wake up calls!!!


Secondly, after getting home, having my breakfast and catching up on Friday night's Children in Need Show (I recorded it so I just watched certain parts) I decided that I would go for a walk. My dog isn't very well at the moment, and Jamie still at work, so at 10.30am I set off walking on my own with only my iphone music for company. I didn't have a planned route or time to walk, I just went where my feet took me. I was quite surprised when I walked back through my front door to see that it was 12pm and I had been walking for an hour and a half!

I took this picture of the Abbey on my walk, how pretty does it look?!
I felt great after my walk! Admittedly my feet were a bit sore and my legs were ready for a sit down, but all in all the fresh air and exercise left me feeling awake and energised. After so long of hardly being able to do anything, it is so nice to finally become more active again. Im looking forward to my next walk now!

My third improvement is I have decreased my steroids again by 2.5mg, so I am now on 12.5mg. Each time I decrease, for the first few days I feel slightly more pain in my joints, but then it starts to get better again. I think this is because my body needs a few days to adjust to the new level of steroids. Im going to keep decreasing them by 2.5mg every few weeks until I am either in pain again or hopefully, until I am off them completely. Fingers crossed its the latter!


The only slight disappointment is my index finger still shows absolutely no sign of improvement. It is still swollen and I still cant straighten it or use it for anything. Maybe my next dose of MTX tomorrow will start to help.

Friday, 16 November 2012

Layout Change

Hi everyone

I have decided to give my blog layout a bit of a change with a new banner and background.


I didn't like my old banner and I have been meaning to design a new one for ages, but just wasn't sure how to do it. In the end I had a bit of a mess around on Word and created a new one. I'm not the best at graphic design and it isn't the best header, but it will do for now until I can find someone to make one for me!


I am still changing bits around, but I'm having difficulty editing some links and fonts on blogger. (Still quite new to blogger and haven't worked everything out yet!) So keep your eyes peeled for the final version over the next couple of days.

What you you think of the new layout?



Thursday, 15 November 2012

MTX week 6 & Winter Walks

Hi Everyone

There is not much to say in terms of MTX week 6 to be honest, as there are still no significant changes. I am not in any less pain and the swelling of my index finger in particular is just as bad. At the same time I have not had any side effects from the drugs other than feeling dizzy in the morning that I take the MTX. So in that respect, I'm still waiting!
On a more positive note, I have decreased my steroids again by 2.5mg, so I am now on 15mg a day. I decided to decrease my steroids by myself because the visits between seeing my rheumatology doctor is 3 months, and there was no way I was waiting 3 months to start decreasing them!

I don't like taking the steroids for many reasons; 
  • they can thin your bones, 
  • they can destroy your stomach
  • they stop your body from producing natural hormones and many other side effects. 
But the main issues I have found are constant hunger, reduced memory and water weight gain (mainly on my face). Lots of people have said that they can hardly tell I have gained weight and that my face has become more rounded, but I can tell and I have felt very self conscious about it all. You know your own body and you know when something changes.
Therefore I decided to start walking as well as decreasing the steroids, to try and shift this stupid water weight! In order to manage walking I have to strap up my feet and wear a knee support, but its worth it and I am really enjoying becoming more active again. I also love walking in the winter in the fresh air, its my favourite time of year.

Last night after walking for an hour with my dog and niece, I sort of ruined my hard work and had a hot chocolate with cream and marshmallows! I'm not usually a fan of hot chocolate to be honest, I am a big tea drinker! But on the rare occasion that I have one, I go all out with cream, marshmallows the works! I made one for my niece too and it seemed to go down well! I must admit, it was rather tasty and I can see myself having a few more over the winter months. But isn't that part of the fun of cold weather? Walks in the fresh air, big, comfy clothes  and lots of warm food and drinks?!

Don't you just love winter?!

  





Wednesday, 7 November 2012

MTX week 5, Bloods and more confusion!

Hi Everyone

So after my confusion yesterday about my prescription for MTX, I emailed my GP and requested more MTX and folic acid urgently as I needed to take the MTX this morning. I received a reply saying that it would be ready after 5.30pm, so it was going to be a rush to get the prescription and get to a pharmacy before they shut at 6, but at least I would have my meds on time.


I managed to get to the pharmacy at 5:45, but when I got there the pharmacist told me that my GP had only prescribed 3 pills a week for the next two weeks instead of a 6 a week for a month. They rang my GP (not my usual GP who is on holiday) and he said that he had on my notes that I was to start on 3 a week for two weeks and then progress to 6 two weeks later, which was right, a month ago! My GP was on his way out to a house visit so he said to give me what he has prescribed for now and ring him again in the morning. So basically there was a mis-communication between the hospital and my GP surgery about what stage I was at.


This morning I decided to go with my gut and take all 6 pills, because I knew I was right and I wouldn't be able to speak to my GP before I needed to take them. I rang my GP and asked for him to ring me back, and then headed out to the path lab for my second blood test.


My second visit was the complete polar opposite to my first in every way. Firstly I was the only one there until about 8.55am, secondly I only had to wait for about 15 minutes once I was in the waiting room and thirdly it hurt way more than the first time! I dont usually find blood tests painful, but when I looked at my arm afterwards, I have a large scratch up my arm where the nurse had inserted the needle. Even so I was pretty happy to be in and out much quicker this week.




When I arrived and collected my queue card, I was "patient 8" this week, despite being the only one there! Apparently people go the night before and get a card to save queueing in the morning. Only patient 1 & 2 turned up while I was there though, so I got seen to third. Much better than 14th last time!

My GP then rang me back, and after I explained the situation he said he would do a new prescription for a months worth of MTX, with 6 pills a week. He was actually very nice and said that he didn't want to make a rash decision late at night with such strong drugs, which I completely understand. So it is all sorted now hopefully!

In terms of the MTX side effects, once again my head feels a bit fuzzy and I feel exhausted, but nothing too horrible.


After a stressful few days I'm looking forward to a hot bath and early night tonight!






Tuesday, 6 November 2012

Drop in Clinic

Hi everyone

So today was my first visit to the reheumatology drop in clinic. It was actually my second visit to the rheumatology nurse, but the first was a sort of introduction to what is going to happen over the next few months.


I was slightly nervous about this visit today, not because I was worried about what was going to happen, but because I was unsure about what time I was meant to be there! When I had my first visit to the nurse, it was a scheduled appointment, but she asked me to come to her drop in clinic in a months time, any time between 8:30 and 9:45 and that it was just a first come first serve basis. However on Friday I received a text from "NHS no reply" saying "this is your appointment reminder for Tuesday 6 November at 09:10". 





Initially I thought that this would be an appointment with the rheumatologist doctor, but when I rang to find out, they said that this was my appointment with the nurse. Very confusing!


Anyway I went today at 8:50, so that I was there in enough time for the appointment, but my nurse was there waiting for me. When I asked her about the appointment time, she said that the text was complete rubbish and not to take any notice of the text, it is definitely a drop in clinic.


In my appointment, the nurse checked my joints to see which ones hurt, made a note of my recent blood test results and had a chat with me about how I am feeling. It turns out that my white blood cell count had gone up, meaning that I might have picked up an infection already, but she said it wasn't too high so I wasn't to worry. The good news is my inflamation count has started to decrease, not enough to notice any changes yet, but it is going in the right direction!


Last time I saw the nurse, she gave me a prescription for my first months worth of MTX and Folic acid, so I assumed that I would be getting my second months worth today. WRONG! Apparantly I am meant to get the prescription from my GP from now on, although I dont remember being told that! I am due to take my next dose tomorrow, so I had to email my GP and ask for the prescription, in the hope that she would do it today, I could pick it up after work and be sorted for tomorrow. Once again, WRONG. My doctors don't do same day prescriptions, even though I explained the situation. They said they will try and sort it for after 5.30pm today, but they cant do it before then, and they may not be able to do it at all. I just have to turn up at 5.30 and hope for the best.


So all in all, quite a bit of confusion surrounding my first drop in clinic, hopefully it is just a few teething problems and it will all get easier in time...




Friday, 2 November 2012

A Year to Go!!

Just a quick post to say...

I get married a year today!!!!!


Jamie and I got engaged in October 2011 and this first year has flown by, so I can only imagine how quick the next year is going to go! Especially when I am so focused on my treatment and getting better at the moment.




I just hope that methotrexate does actually work for me and I am in a much better state by next year, I dont fancy hobbling down the aisle!!


Im off with two of my bridesmaids to check out my hen weekend location today and tomorrow I am going for a meal with Jamie to celebrate our six year anniversay, so it should be a good weekend :)