Wednesday, 31 December 2014
Monday, 29 December 2014
Monday, 22 December 2014
Sunday, 21 December 2014
Thursday, 18 December 2014
Tuesday, 16 December 2014
For anyone who has to have regular blood tests, it's important to make sure that these appointments with the phlebotomist (aka vampires) are regular and at the correct time.
Up until about two years ago, I was having four weekly blood tests, the blood tests were and still are necessary to measure such trivial things as platelets, liver function, kidney function, infection levels, bone marrow function etc. ( when I wrote "trivial" I was being flippant).
Why the need for such regular blood tests? I hear you ask, well, that's because I'm on a drug called methotrexate for my psoriatic arthritis.Methotrexate was developed in the 1940s, and has three main uses: i) induction of abortions, ii) chemotherapy drug used to treat cancer, iii) used to dampen the immunity system in the treatment of autoimmune conditions. As you can imagine, if it's used as a chemotherapy drug then it's going to be toxic by its very nature of what it does. Hence the need for regular blood tests.
I'm lucky that my blood results are very stable, and so I was moved onto 12 weekly blood tests; while this does mean having less needles, it does mean that I have to keep track of when these blood tests are due. I use a excel spreadsheet for this, putting the date of my last blood test down and adding 84 days to that date. I'm coming to the end of my monthly prescription of this drug, so will be needing to order some more. To get my prescription, I have to have the blood test, no up-to-date blood test no medication! The beginning of next month is the next time I'll have my bloods done.
On the subject of needles, I do make a point (excuse the pun) of having a regular flu jab in the beginning of October; since methotrexatedampens down the immunity system it makes you more susceptible to communicable diseases.
Wednesday, 10 December 2014
Saturday, 29 November 2014
Thursday, 27 November 2014
I suppose when you think of Osteoporosis you think of old ladies with a hunched back. It is regarded as a condition that affects older people in our society, in addition there isn't much awareness of the condition.
Probably the first someone realises that they have this condition is when they find themselves in hospital with a broken hip; by which time the damage is done. Remember that broken hip have a mortality rate of about one in three.
This was the story for my mum, who found herself on the floor about eight years ago, unable to get up with her right leg twisted in such a way that her foot pointed out at 90° to the side. This was followed by another broken hip (this time greater trochanter) five years later. In addition to using up a hospital bed for about a month in total; it's also robbed an otherwise alert OAP of much of her mobility & freedom.
Around 18 months ago, I attended a talk given by one of the National Osteoporosis Society's representatives at my local Arthritis Care monthly meetings. I was quite interested in what she had to say, and indeed it did spur me into action! I was aware that I had a number of the risk factors which leads to osteoporosis. These being taking Proton Pump Inhibitors (ulcer tablets in other words) and a family (genetic) predisposition to this condition. In addition, the National osteoporosis Society has a website, where you can access a page specifically devoted to risk factors, one of the risk factors named on this page is rheumatoid arthritis.
There are of course other factors that can cause osteoporosis, namely, taking steroids, having an early menopause, thyroid conditions, lack of calcium and vitamin D in the diet, sedentary lifestyle, lifestyle choices (smoking and drinking), low BMI/ eating disorders, in addition to having health conditions such as Coeliac & Crohn's diseases.
I approached my rheumatologist, and asked if I could have a DEXA scan of my bones, due to the two risk factors I mentioned earlier. A letter was sent off to the osteoporosis nurse and some three or four months later I was having the scan. A simple enough procedure, which took a matter of minutes to complete and the removal of my trousers. About a month later I went to visit my GP on another matter, and while this other matter was the main reason for my visit I did ask if I could have the results of this DEXA scan... It came back that I had osteopenia.
While I haven't been prescribed anything for this "new" condition, I decided to do something about it myself and purchase a large jar of calcium tablets.
While some people may find taking calcium tablets hard to swallow, there are some alternatives, namely increasing your calcium intake via your food. eg Milk (especially skimmed), yogurt, cheeses, almonds, sardines (I suspect it's the bones), dried figs and currants.
Saturday, 22 November 2014
Sunday, 16 November 2014
Saturday, 15 November 2014
Sunday, 26 October 2014
Thursday, 23 October 2014
So I havnt really been blogging much recently because I've been sick or busy, what a mix ah?! Well first off I've had well no one seems to know but I've been literally falling asleep unexpedictly! I'm tired too I mean when did I start falling asleep at midnight lol! I don't enjoy sleeping because of staying in one position my joints really hurt in the morning! So doctors ain't really sure what's going on there.
I've been having a lot of appointments recently here's a run down, some exciting news too!!
So many of you know I've been having some grief counselling to help me to deal with the loss of my mum I know it's over six years ago but it still hurts, I miss her every day. So I have been seeing a lady who's been helping me. We are coming to the end of my session now and not really sure what next I'm considering having private session to really get a handle on these feelings. But not due to finish until December so we will have to wait and see!
So I've also been seeing a lovely lady at one of the local hospitals and I swear she's a miracle worker! I've been seeing her for a while now and it's really helping me. I have splits to wear which are a little uncomfortable but they are working for me. My right hand which was the better of the two has improved with my one finger now going back straight which it wasn't before! My left hand and the worse has had a good improvement with a cople of degrees better in two fingers.
I've been seeing a new physio too she's really good! I've been doing many different exercises including standing with bars, swaying (LOL) and ball work and at home I have exercises to do daily. They have been really good and we are both pleased my one knee, my best knee! Has got a little worse but it has been flaring pretty badly! However my right knee that's "stuck" has moved a massive 10 degrees which is a massive achievement for all my team!
I also have many other appointments it's all fun and games! His week alone as of Thursday I've had 7 appointments and another couple Togo tomorrow!!! Lol I love being busy but it certainly takes it out of you but I'm working really hard to get my self back to dancing!!
On a final note of this blog, I recently passed my diploma in tourism management which I've been doing for a few months to fill a bit of time :)
Monday, 20 October 2014
Sunday, 21 September 2014
You see I have lots of friends or maybe that should be acquaintance, I love social media because it keeps me in touch with many people. Only earlier in the week did my twitter pals do me proud with retweeting this very blog and we reached just under 50 thousand people. My Facebook friends too shared my blog all of which helps me to raise the awareness of rheumatoid arthritis and I'm proud that most people I come across on social media now can tell you about rheumatoid and say it's not just arthritis you know! Many people wouldn't know what it was before they spoke to me so I'm pleased I've been able to help people understand ra a little more.
I'm real lucky to have friends throughout this world and that's great and many I'd have not meant if it wasn't for chd or ra and for that I'm really great full I've sure meet some awesome people and been able to visit lovely places and have other adventures next year!
Anyway back to what I find hard the most. I live in a town that is well my home town I was born here went to school here! Yet I don't feel I belong here I mean I see my dad, brother and cousins but I have no friends here in fact I don't remember the last time I had a friend pop by! That's part of the problem here I feel so isolated with having no friends!
Saying that I hardly see any of my friends after my mobility got worse I found I was reliant on my wheelchair until I had to totally rely on it. It's no fun having a friend in a wheelchair I guess who crnt do everything and go everywhere you can. I mean what a bloody burden having a friend who crnt dance with you or go In the main crowds at gigs or sit on the terraces at the football, or go in all the shops because of steps or just plane and utter disorganised shops! Who wants to go on holiday with a friend who crnt get there own drink or get in the pool .. Well no one does really that's the thing really it's no fun having a friend in a wheelchair well hey it's no fun being in a wheelchair you know?
I'd love to see my friends more and speak to them more but guess that boats well and truely sailed!
So yes I feel like one huge burden in my friends and just wish I had one friend who didn't mind spending time with me and doing all the fun things I can still do and do still enjoy, football, gigs, holidays, shopping, meals out, traveling.
Wow that felt good bet I have upset a few people but hey go u gotta express it!
O.s I know people are busy and have commitments this is just how I feel I don't mean to upset anyone.
Now I'm literally 5ft and I always wanted to be taller lol so heels were literally my thing! From high school I use to wear heels to get a bit taller! And through out light well u til 23 I wore heels in fact I loved heels so very much.
I had a collection of heels every colour you can think of even bright yellow! They were my thing I had far to many but I was always buying more lol! Heels made me taller gave me confidence!
When I got diagnoised my feet went really quickly the first place that actually flared up. I was so upset and distraught I bagged all my pairs up I must have had 70 odd and put them in a shoe bank!
Now 6 years on from that terrible day I cried as they went in the shoe bank! I still think of them and look at heels with awe oh how I wish I could wear just one beautiful pair of high heels!
I now wear trainers but they just don't make me as happy as high heels lol!!
So if you wear high heels smile extra wide because u know they feel good treasure your heels!
Friday, 19 September 2014
Now the weathers changing the pains stepped up as it does every autum and I will focus on my up coming trip to Seattle to allow me to get through this tough autum/ spring
Anyway back to fatigue. This week I've suffered so bad it's been silly. Tuesday alone I could only stay awake for 2 hours before needing a sleep and had to foce myself to stay away to take my medication! I have no idea what happened on Tuesday I was that fatigued!
Friday again has been a tough day for fatigue I went for a nap as my body was lagging and guess what I woke up and I'd only slept for 3 hours!
But with this in mind I also suffered insomnia on Thursday night it was ridicules I just couldn't fall asleep even though I was absolutely knackered as the rest of the week. Some have questioned if I have ME because of how I can get for me it's ra just rheumatoid and fibromyalgia having a good go.
For me it's time to relax stay in and get through the winter best way I know a hot water bottle and the heating on!
So here's to spring :) xxx
Tuesday, 16 September 2014
Firstly I have been seeing a new lady called sunita she's an OT who is helping me with my hand situation. She's really nice and takes time to listen which is important to me. We have have been working on my right hand Initially with getting better extension, this has worked my little finger goes a lot straighter! I have a hand/wrist splint that helps stretch my hand and then using a hand massager that helps work my muscles which helps with extension.
My left hand we are starting to work on now. We measured my hand at normal which showed bad numbers but expected. We then got a palm splint made and measured it again they had moved by 10 degrees!! But under pulling my fingers we can get another 20 degrees which means there's defiantly hope!
I have real hope for my hands again and hopefully that will be success and help my day to day life with better hand extension and usefulness!!
Then I met a new physio who took time to talk to me and listen to me!
We looked at my measurements not great my good leg is at a 33 degree angel which is worse than I expected. We looked at many things but unfortunately I was told that I won't walk again so I've been trying to come to terms with that.
I saw her a week later and she measured again after circling feet, bum clenching and knee stretching! My bad leg which is at 85 degrees was now at 75 degrees!! She had me on my feet well one leg trying to build up strength and get any movement or muscle building that's possible. I've been given another exercise a town round the foot and stretch that leg!
Found out I feel things in places most don't I.e top of my knee instead of behind!
Finally I found out that I have excellent core muscles!
So there's good and bad news I'm feeling a little unsure how I feel at the moment.
I will blog more
As always we were running late in clinic, I never expect to go in on time! I had my echocardiogram for my consultant to get a good look at my heart as he hadn't had one done in London for two weeks!
I chatted away with the lady doing the scan as always I get nervous and just go into motor mouth lol!!
I saw my consultant later and he said that my heart was good and enjoy America!
I then got a letter and I went total panic. My heart does had a leak but I found out this is common for people with my heart condition. After talking to Fiona my heart nurse I felt a lot better about the letter and was able to stop worrying so much.
All in all good appointment happy to see my team back in twelve months
Saturday, 9 August 2014
In 11 short days it will be six whole years since my beautiful strong mum lost her fight to cancer and how she fort a long battle with a smile on her face. You see I didn't realise just how long she'd battled u til she'd passed. All the time I was out living my life totally oblivious to my mums battle. Which makes me kind of sad because if I'd have known maybe I'd spent more time with her doing things my mum like going out drinking or watching ghost!
You see near the end she was in pain she couldn't eat she couldn't talk, she could write though she wrote a lot of notepads. But you know she kept smiling.
She left me a memory box, it had a letter and a notepad in it and it said so,e real nice things she called me "her tricky vicky!"
After my mum died I got rheumatoid and life got so much harder it was like being hit by two massive bricks in the face!
But six years on I've fought rheumatoid, I've fought an eating disorder and I'm in recovery now and I've suffered depression but I havnt stopped smiling and being there for my family and my friends. Some days I want to turn my phone off lock my door and say no more but that's not what my mum taught me she taught me to fight what ever you face with a smile on your face and know that your family and friends will be there for you because your there for them .. That's what mum taught me.
This week I'm starting my chemotherapy medication again i face it alone with a smile on my face and the knowledge I'm on my own. Come August 20th I'll be on my own come the weekend before I'll be on my own just sat here thinking and crying no doubt but that is life u have to keep going and make the best of it.
Thursday, 24 July 2014
So next Wednesday I go back to the heart hospital it's been a while since I saw my team and even longer since I had an echocardiogram and I'm seriously scared! It's not just about hoping the hearts ok but also the waiting to see if I can finally fly to America after disappointment earlier this month.
It'll be nice to Fiona and prof deansfield I'm hoping they can see a difference in me last time I saw them I just sat and cried. I hope my appointment goes well. I hope no procedures are needed I hope I can fly.
I'm just so nervous and anxious about this appointment I have butterflies in my stomach on a plus in a day in London with my brother!
Thursday, 5 June 2014
So since I last blogged I've been seeing my gp regular who's helping me finally see that light at the end of the tunnel there's a long way Togo but I'm definitely seeing the light it's getting brighter!!
My eating has improved!! I went to a restaurant recently and had rare beef (yup you read that right!!!) and then I went for pizza with my brother to! I know it's not that big but for me it's a real big thing because of my eating issues so I'm really pleased with that!!
I started seeing a councilor to help with the loss of my mum and I think it's helping to be able to talk things through. I know some don't like the idea but for me it works well and it's helping me get back on track.
I also started seeing a hypnotherapist and this is really helping me see things better and helping me to start thinking less negatively again which is quite a feeling!!
So other than that ..
I went to London at the start of may with my cousin we had an absolutely fantastic time, we went to the royal Albert hell for the first time and it was fantastic. We had a good chat and lots of laughter and joking! And some fun with the wheelchair and luggage lol!!
Then I went to Manchester the following weekend to meet up with my friend and see mcbusted who were amazing and we had a few drinks in the Lowry after! I've never sang so much lol! We also got breakfast which is unusual for me but then I had drink a rather huge glass of wine haha!!! (It was more like a bucket!!!)
Then I went back to Manchester 2 weeks later for a fun filled bank holiday weekend. I met up with my friend mark and we didn't go to football this time, (many regular bloggers may know he's my football buddy!!) we went and got a light snack well I did (who'd have thought is be the one eating!!) then checked in and I had a cheeky lye down!! So when Duncan showed up I wasn't ready ops! I got ready with his guidance as it was raining and of course I wanted comfort! We went to spoons and met up with Eric and some of Duncan's others friends and the court yard then headed to the venue to see some brilliant bands, chameleons my first time live what a great band! Wedding present and neds atomic dustbin who were also good! Then the walk or roll back to the hotel! Sunday was exciting as we had planned Togo to rio Ferdinand's restaurant rosso's the service was fantastic and the food was lovely! We then went for a quick change if clothing and off to coronation street tour! It was a really good day. Monday came and I was all emotional because I was leaving Manchester and saying goodbye to my friend and something felt different don't know what but something had changed.
So now we are in June and I'm off back to Manchester for soccer aid with my cousin and I am so excited to take her to her first ever football match and of course to the theatre of dreams, old Trafford!!
I'm going to start updating this more as things are moving quickly with me now. I really hope you enjoy my posts and thank you to my readers who have stayed on this journey since 2011 it's been tough writing at times, we've shares some good and bad times through this blog, I hope there will be many more good and positive times ahead.
Thank you finally to all my friends for sticking by me and of course my family for always being there xxx
Sunday, 13 April 2014
So I rang my friend mark, booked the hotel and we was ready! I met mark at Piccadilly as always me from my Birmingham train and him from his Yorkshire train. We got into a taxi off to the hotel. Unfortunately our room wasn't ready so we left our luggage and went into Manchester. We visited the football museum which was good to visit and I really enjoyed it, although the lift wasn't for me!!
The hotel rang to say the room was ready so off we went back. It was marks first visit to the Lowry and I think he enjoyed it! We chilled out for a bit before getting some food, you crnt best room service it's super yummy! We then got ready for the game, now as I'm use to winter games I wrapped up warm but I forgot my blanket yet again!
The game was one I won't forget in a hurray, it went to extra time with a late strike from Chica then penalties. Unfortunately united lost and we then had to leg it for a taxi back to hotel! We wasn't very happy but at least a friendly taxi driver!
Over all a fantastic time in Manchester and it's always lovely to catch up with my friend and my football companion, here's to more games :)