The Rollercoaster Known As 'Life'

Hello! I'm back again! I hope you're all doing well :)

So, it's all been happening in the past month! I've just got back from having a lovely bloodtest (2 forms instead of 1!) and a chest x-ray, just to doubly make sure I've never had tuberculosis or hepatitis. Which, as far as I know - I never have, so that should be fine, but I had to have them so that the hospital can be all fine and happy to prescribe me... Drum roll please.... ADALIMUMAB! (try pronouncing that when you're drunk) Otherwise known as Humira. This is another injection, but it's every 2 weeks as opposed to weekly (phew! I suppose) I've literally been waiting to have this medication for years! When I was about 16 (so 5 years ago) my doctor tried applying for the funding to get me it a few times but was declined every time, but it turns out Lincoln are lucky enough to be able to just give it out when they want to. So I've just got to wait for my results and then get on that, I'm sort of excited, but sort of nervous at the same time.

The downside to Adalimumab (asides from it being an injection) is that it's also recommended that I get back on Methotrexate again (boooooooooo!!!) I'm obviously quite reluctant, but I've said I'll give it a go! 

Day before hospital appointment and 2 weeks after

 

I've also been taking Prednisolone (steroids) tablets for the past month, and as you can see from my picture of my bad ankle, my swelling has gone down so much it's crazy! Like, my foot on the right side of the picture nearly looks like a normal human foot! This doesn't mean my ankle's better though, it still swells up occasionally, and I can't really move it at all. And due to losing the swelling it's a lot more vulnerable and gets cold really easy now which hurts a great deal, but it's a step in the right direction! :)

Asides from all this hospital-y stuff, I've been trying to keep myself busy with not working and all. I've been working towards walking again and I've managed to get myself down to one crutch most of the time, two crutches when I'm in a great deal of pain, and wheelchair when we go shopping or something. Hopefully in time I'll build up my strength again to be able to just use a walking stick, and then work my way up to walking longer distances, as I use the chair at the minute as I'm just exhausted after quite short amounts of walking. I have hope! :)

You can find my page at:
www.facebook.com/GeronimoCrafts

I recently auditioned and got the job with the Lincolnshire Road Safety Partnership, performing in their corporate tour which we will start rehearsing for in the New Year, which I'm excited for, and it's adding motivation to get me better and walking again! And I've been doing some crafting! I've been making Christmas presents for all my family, but I hope in time to be making some stuff to sell, so I set up a Facebook page for it (feel free to give it a like!) It's been nice to do something which is rewarding but not physically demanding, it feels so good when you finish something and it looks fabulous! 

Give us a listen at Siren 107.3FM or online at www.sirenonline.co.uk

 And last but not of course not least, I've recently started co-hosting and co-producing a little radio show with Simon called Take the Stage, which we do every Sunday 2-3pm (feel free to tune in!) It's good fun, we play lots of great show and film music and generally have a chatter about local theatre and films on at the minute.

So, as you can see I've been trying uber hard to keep busy haha! But hopefully Simon and I will shortly be moving out together and hopefully I can get back into work again, so overall, feeling pretty optimistic at the minute! Woohoo!

Anyway, thanks for reading, well done if you made it this far - I realised I've babbled on quite a bit! Next update will be soon I'm sure!

TTFN, Ta ta for now!!
 :)

The Downfall

Hi guys,

This post is a little bit of a downer compared to my last one a few months ago, as I had just started my new job then, and now I'm set to be leaving it in just over a week. 

I've had a little bit of a roller-coaster ride since starting here, with struggling when I initially started, but then having a hospital appointment not long after my last blog post (when I decided enough was enough and I needed help from a doctor again) where I received a steroid injection and discussed the potential of starting a new weekly/biweekly injection or monthly infusion - this will be decided upon on my next appointment. Anyway, I returned to work again after the appointment, and found myself coping much better, and managing shifts with a lot less pain (although I was still in pain, just less) thanks to the steroid injection I had. But... Unfortunately that wore off after 6 weeks (when I was due to go back for another appointment, but had to rearrange, little did I know it'd be a whole month later!) So, at the moment I'm back to square one, suffering so badly I've had to leave my job (well, in a week)...

It's a real downer really, as I was enjoying the job, I love hosting and my fellow team members are great. But I'm often finding myself unable to finish my shift, and having to leave early, and then arriving home unable to walk any more. Genuinely, there have been nights where I've got home from work, crying from the pain and the misery it causes me and I've not eaten anything because I can't deal with the pain of standing up & walking... And the pain has made me lose sleep often, and I know it's not a healthy way to live at all, in fact it has made me feel quite poorly on a regular basis.

I find the whole thing incredibly degrading, I've honestly never felt so worthless. The fact that I can't even look after myself in a tiny accommodation which has no stairs, and everything is only a few steps away at the age of 21 kills me a little bit. It's just totally ruined me basically, we all know I hate giving up on things, and I often like to define myself as a "trooper" for all the stuff I've managed to do by not giving up. 

But unfortunately this time I have to give up, and I'll be moving in with Simon and his family, and see where I can go from there... Fingers crossed I'll be up and running again shortly, I'll be sure to blog about it when I am, but in the meantime, it'll be time to rest and prepare myself for my next hospital appointment - which will probably include being prescribed a new injection :(

TTFN,
Ta ta for now.

Reminiscing Over the Past 6 Months!

Happy New Year!! I'm back, and it's now only FIVE DAYS UNTIL MY BIRTHDAY!!! (I'm gonna be 20 - getting old!)

Sooo, on Friday I finally got discharged from physiotherapy as my physiotherapist told me I was "the best she'd seen me" and just to carry on with my exercises and maybe make them a bit more weight-bearing to carry on strengthening my legs! So that's pretty good really!

This lead me to reminisce over the last 6 months, and how much it's all changed, I started off 6 months ago, medicationless, in pain all the time and limping dreadfully... Now I'm walking fine, I can even walk up & down stairs normally! And plan on climbing a mountain a few months!

Although I may not like my medication, my injections and my blood tests, overall, it's making everything better gradually, which is of course is the aim... so it's all grand really!

I'm having my next injection delivery on Wednesday... It's weird to think I've had over 7 weeks of them so far, it feels like less? Weird! Anyway, I'm also back at hospital in March to see my doctor again, who will probably try and think of another solution for my (still bad) ankle! Here's hoping it might be slightly better by then :)

Anyway, not much else to say, except gradually making some changes to the blog! Check them out (for instance - my 'gallery' page... which seemed less weird in concept than it does.. oh well)

Also, on a last note... please check out my Facebook page - https://www.facebook.com/Climb4CleanWater and give it a like? It would be a great help!

Thanks!

TTFN, Ta ta for now! :)

I hate trying to think of a title...

Hello!

Gee, I'm no good at just regularly updating this am I? Sorry! ><

MOST RECENT UPDATES: I am now back off Sulfasalazine, as when I was about to move up to 4 tablets a day, I got taken off them (and my Methotrexate) as my liver functions were a bit off - So I had the delight of 2 weeks off nearly everything!! (it was seriously delightful), but now, since my most recent hospital appointment, I'm on Prednisolone (steroids) for 6 weeks, and Omeprazole for that time too (for my tummy), and in a couple of weeks I shall be starting the "METAJET!" (or whatever it's called) which is basically the injection form of methotrexate because, apparently it's more effective?

Omeprazole - lovely bright yellow capsules! Hard to lose!

Prednisolone (steroids) 

So yeah, we'll see how that goes, and hope for the best! - And the reason I'm on steroids for 6 weeks is because I very politely declined having a joint injection in my ankle... Basically, I'm a big pansy, and really don't want it unless they're gonna give me some pain relief! Sooo yeah, hopefully steroids might help that?

Still on with blood tests every 2 weeks, which is joyful, but I'm getting better at it.... (if you CAN get better at blood tests?) - then again, it's getting colder now, and I get worse at blood tests when it gets colder, so maybe I shouldn't brag, as it'll just get worse from now on :P

Well, the cold generally just makes everything kinda suck, you've gotta go out dressed as Mitchellen man (or whatever he's called) just in order to not get cold joints and get joint pain!! grr ><

Anyway! That's my update done!!

TTFN, Ta ta for now! :D

Time to Get Fit!

Hey there readers!

Today I finally received the exercise bike I ordered and it's all exciting!

This is the bike I'm going to use to hopefully improve my leg muscle strength, because with having arthritis in my ankle and knee, it causes limping, which means some muscles will be wasted and others will be relied on too much... So my aim is to try and even it out and make them all stronger and perhaps make walking easier.

It's also to keep fit in general (because I'm so lazy!) and don't want to be any more to be honest! I'm hoping to be more active in general in my second year in uni, hopefully starting climbing and I'm considering lots of other sports, so fingers crossed for my joints to keep all good for them!

On the note of my previous joint injection, I still haven't had much improvement in my knee, it's still swollen and a bit painful, so we'll see what the rheumatolagist nurse says about that when I go see her (I'm still waiting for that appointment), I hope they approve of this new activeness!

Cheers for reading!

TTFN, ta ta for now! :)

Hey there!

Hey there! Sorry for the delay, I was internetless (that's not really a word, but heyho!) for a while, but now I'm back, in my new house for my second year of uni, and with internet again!

So, today has been a day of progress, because today I finally got to see a rheumatologist here in Lincoln, and, it was eventful to say the least... I just expected to discuss the options for the future of making my arthritis a bit better, but with that, I also got a steroid joint injection in my knee, followed by 10 minutes of being lightheaded and feeling very poorly (I do not deal well with injections!) especially seeing as this was the first time I'd had a joint injection with out pain relief such as laughing gas or general anaesthetic, but unfortunately, this is what 'adulthood' entails! And then to add to my sorrow of a joint injection, a nice trip to phlebotomy for a blood test! woohoo! But on the upper hand, the pain from my knee probably made me deal with this blood test the best I ever have!

So now I'm sitting on my bed feeling pretty sorry for myself as I can't bend my knee, and hobbling is no fun! Sad times, but on the happy side, this should hopefully generally bring the swelling and pain down in my knee, BUT on the unhappy side, I have to go back in a few weeks for another one in my ankle! :(

But apart from being a bit sore and achy at the moment, I've been having a good summer holiday, which is always good news and I'm hoping for the best from this hurty joint injection!!! Fingers crossed for a near future of not limping!

I'll keep you posted on the joint injection and my knee (I'm not leaving you this time!)

TTFN, ta ta for now!! :)

Steroid Joint Injections

"You got injected with steroids, so you gonna be dead muscly now?".... I wish! haha

(I'm going to keep this blog short, because I've been told I write too much in one blog! sorry!) :D

This isn't the prettiest of pictures, but this is my ankle after my 35th & 36th joint injection (one at the front and one at the side of my ankle). Lovely, swollen and.... yellow. :D This is the first I've had done with a x-ray going on at the same time so they could see precisely where the needle was going.

I had my first 16 joint injections under a general anaesthetic, and then also the next 14 under a general anaesthetic, but since then, the last 6 have only been with 'laughing gas'. Having the actual joint injection hasn't been bad in either situation, as I haven't really felt it (much), it's the aftermath that's bad, it's quite painful and takes a few days to rest off. But they can be certainly very helpful, they pretty much made the majority of my joints pain free (with the obvious help of medication) and they've been alright since, with others such as my ankle (pictured) and my knee, it's not worked quite so well!

Joint injections really aren't worth worrying about, when I first got told about them when I was 13, I panicked a lot! "NEEDLE'S IN MY JOINTS!?! WHAT???!!" but after having them I realised they're certainly not as bad as they sound! (they're still not very jolly though) just make sure you have someone to look after you for a few days after! :)

(I'm still waiting for some replies on blood test advice from the last blog!! c'mon guys, I really need some! haha! thanks!) :)

TTFN, ta ta for now!! :)