The life and the times

Hello world!

Wow, it's been over 3 years since my blog post!  I have no idea if there's anyone still out there but I'm still here slogging away and I figured I should really start up blogging again because I feel I want to share so many things, craft related, but also health related, because we all need to know that we're not alone when we have problems, including me ;-)

3 years update...

Loop-da-Loop first!

• Well I have to say it's been a hard struggle the last few years.  Most of my sales came through Facebook, I always had a long list of orders to do and for 2 years in a row I was working on them right up until Xmas Eve, but then Facebook brought in their algorithms.... it's old news now, but essentially it means that of my over 2100 followers on there no more than usually 100-200 see my posts, in fact one photo I posted recently only got shown on 10 people's timelines.... :-(
  
  As such there is no order book anymore and the sales far and few between, solely coming in on Folksy these days, boooooo.  So what I'd like to do now is give Craft Fairs a try... there is a slight problem with this though, which brings us on to....

...health

• My Psoriatic Arthritis is now well managed, so says my doctor, in terms of blood tests anyways, I'm still on the methotrexate though I'm not on the highest dosage any more. A couple of years ago I was walking with a cane, now I do kick boxing, cycling, jogging (yuck!), swimming and more.  That being said, I still have constant pain and the PA has spread to most of my joints now, but I'm strong and I don't/won't let it beat me!
   
• My PCOS I'm no longer trying to manage with medications, it's been a struggle but I've successfully managed to lose over 4 stone so far. I still have about 4 stone to go, but hopefully it's all helping to lessen the hormonal issues!
   
• I don't think I've mentioned it before, but I've struggled with anxiety and depression since my early 20's.  It's gotten worse over the years, and was the predominant reason I quit my day job a few years ago.  On the whole my depression has improved since leaving work, thankfully I haven't had any major episodes during this time despite the health issues that have come since then, buuuuut my anxiety has gotten worse and I suffer from Agoraphobia and Social Anxiety and do struggle to leave the house on my own.  Hence the slight problem with craft fairs...
  
  The way I would describe it, is that I feel like whilst I'm inside the house I'm in a protective bubble of sorts, going out of the door fills me with anxiety and dread, even to go out to the rubbish bin or into the back garden, and even answering the door or phone fills me with fear.  It's easier to go out with others, and it's easier to travel by car (less chance of human contact), and it's easier to go to places I've been to before, I have a mental list of "safe places". 
  
  Some days the anxiety feels like a big brick wall blocking the door, and some days I can find the sledge hammer to break through, and some days I just can't. 
  
  Today I needed to go to the Post Office, a small trip, less than 10 minutes by cycle but I was absolutely "bricking it" about going. I find cycling easier than walking because there is less chance of human contact, and when I wear sunglasses to block my eyes and headphones to block my ears I feel more like I'm in a bubble again, but it's still a struggle to step through that door.  Today I found my sledge hammer, and even went for a longer cycle ride before heading to the Post Office (mostly to burn off those "fight or flight" hormones my body was making through the panic), today was a success.
  
  I have been asked "What's the problem? What is it you're worried will happen if you leave the house?", and frankly it's everything and nothing.  I know realistically that nothing bad is likely to happen, but my mind sees everything that could happen, that my house could burn down, I could get run over, I could get attacked or robbed, I could get chased by dogs, I could be shouted at or harassed... I might have to speak to someone.... And that's why Craft Fairs are going to be a big struggle for me!

I hope that wasn't too boring to get through, if anyone made it to the end!  What I hope will make its way into this blog over the next few months are Craft Fair plans, I have good friends who want to help me achieve this goal and promise/threaten to accompany me and protect me from the scary people.

Loops x

Long time no update!

Forgive me father for I have sinned, it's been 4 months since my last confession... I mean blog post, yikwa!!  So much for that New Years resolution I made back in Jan to blog regularly...

Soooo, as well as being 4 months since I last blogged, it's been 7 months now since I was diagnosed with Psoriatic Arthritis so I figured I'd start off with an update on that.  (Here's a link to my original post about it)

It's been a loooooong 7 months for medical stuff.... Thanx to the arthritis I decided it was time to sort out other medical issues so now as well as the arthritis drugs I'm also on medication for my blood pressure (still too high though so it's an ongoing struggle to find which drugs will beat it down!), and for my PCOS, and couple of months ago my GP put me on Orlistat (the so-called "fat buster" drug which has to be taken with a very strict diet) to try and help me to lose some weight, to help all of the other above issues!  Unfortunately though I had to stop the Orlistat after a few weeks, as my fortnightly blood tests (for monitoring the arthritis drugs) showed that my ALT liver tests were increasing dangerously.  Albeit we don't know 100% that it was the Orlistat until I get the results from my next test but the dates seemed to coincide.  Thankfully though I did managed to lose a stone on them, so I hope I can carry on as well without them as I have lots more to lose but it's a start!!

And as for the arthritis.... Back in March I started on an immuno-suppressant called Methotrexate, initially on the lowest dose, but I'm now on the highest dose for the condition.  I was also taking an anti-inflammatory daily, which was a lifesaver when I started on them both, but thankfully I've managed to come off it now.  I still find it all a little shocking tbh, I went in early last year, being on no medication, and just thinking I might have broken my scaphoid and now I'm hobbling around and taking fricking immuno-suppressants and all manner of other medications!


It's a bit of a toss up in terms of what I think about the effectiveness of the methotrexate.  It has definitely improved my hand. I can now shake hands with people (should the need arise!), my wrist and thumb don't ache all day like they have done in the past, and a large part of the inflammation seems to have gone.  My main elbow problem was that it would get stuck and wouldn't straighten and that has very much improved. And with the exception of the occasional bad day my neck and shoulder are much better.

However on the other hand it kind of hasn't done as much as I had hoped it would.  Deformities have developed, my elbow doesn't straighten fully anymore, I don't have much movement in my wrist, and I can't close a fist as my ring finger and thumb no longer bend much.  Plus it really doesn't seem to have helped my foot and ankle at all, so mobility is my main issue these days, walking and driving.  Still, I guess without the methotrexate things could be a whole lot worse so I should defo count my blessings, it's only been 7 months and my treatment is ongoing, in fact I'm seeing my Rheumatologist next Friday so things could all change yet!

The long and short is that I'm not going to be playing badminton competitively anytime soon (which my friends and Mr Loops are grateful of, they might finally win a game!!) as I'd have to switch hands and hop on one leg to play, but I'm still able to craft, at least at the moment, which is the most important thing to me  :-)

The next health worry though is that I'm off to the hospital tomorrow to see a dermatologist about a potential pre-cancerous growth..... yikes, wish me luck cos I'm bricking it big time!!!

Loops x

Diagnosis!!

So much for that New Years resolution I had....

Anyways, serious post today.  So I haven't mentioned this in my blog before but if you're a fan of Loop-da-Loop on Facebook then you're probably aware that I've been awaiting a diagnosis recently.

Timeline:

• April
  - Pain began in RH wrist
• May
  - 1st visit to Quacks, given anti-inflammatories
  - Pain began in RH ring finger knuckle, thumb and hand knuckles
• June    
  - 2nd visit to Quacks, anti-inflamms = fail 
• August    
  - Wrist X-ray and blood test
• Sept    
  - 3rd visit to Quacks, results = nothing obvious in x-ray, negative results for rheumatoid arthritis in the blood test
• Nov    
  - 1st visit to rheumatologist
  - Pain began in neck 
• Dec
  - MRI scan 
• Jan
  - Pain began in RH ankle
  - At this point up/down movement in wrist has become restricted to less than 45°
  - Blood test 
• Feb   
  - 2nd visit to rheumatologist for results and DIAGNOSIS!!!

So it's been a long journey/wait and it's been very important to me to get sorted, despite my irrational fear of doctors and hospitals (and dentists!), because I was concerned about the future of my crafting!!

To put you out of your misery, I've been diagnosed with Psoriatic Arthritis, which as I understand it is very similar to and often incorrectly diagnosed as Rheumatic Diagnosis.  I have to say it didn't mean an awful lot to me at first, and the diagnosis was somewhat of a shock as I considered arthritis to be an old person's disease and I'm only 34, but it's been good to put a name to the problem because I'm a control freak and knowing means I've been able to research it myself!

• Did you know that Psoriatic Arthritis is a disease?  (Non-transmittable incidentally)  There are 5 different sub-categories of it, and around 200 types of arthritis overall!  Osteoarthritis is the type that is related to ageing, but Psoriatic Arthritis can come on at any age.

• Around 10% of psoriasis sufferers can go on to develop Psoriatic Arthritis, it's not developed relative to the severity of the psoriasis though.  Mostly it develops after the psoriasis, but it can sometimes develop before or even without any psoriasis.  In my case I didn't think I had psoriasis until I was diagnosed (tho my father does), but then my GP realised that I did but it had been mis-diagnosed by a different GP!

• The major way of diagnosing the difference between Psoriatic and Rheumatoid Arthritis is that with the former you test negative for the latter in blood tests!  It can also be diagnosed through the pattern of joints affected, and closer inspection via MRI.

Well I'm sure you enjoyed that exciting info... Anyways, so even after the research it's still rather scary, and even the meds are scary, but it's spread so quickly and the pain has increased in the last month so that at this stage I'm eager to try them asap!!

• The primary treatment is with an immunosuppressant like Methotrexate (which I shall be taking), which is a chemotherapy treatment but at a lesser dose than for cancers, which targets the cause of the damage to try and hold back the disease.  The side-effects are scary though and I have to have a chest x-ray to start (as a baseline) and have blood tests every 2 week to check for liver and kidney function, and it's likely to cause nausea and fatigue for a few days a week around my dose day.

• The secondary treatment is anti-inflammatories, I've tried Diclofenac twice with no effect and I've just started taking a new one - Arcoxia, with another med to protect my stomach it!

It's no doubt going to be a long path, and I don't know what it holds (apart from having to take lots of pills and go to the hospital weekly for the time being), I could be on the meds forever, I could have to try several before finding one that works for me, but as long as it reduces the pain and gives me back more motion and the ability to keep sewing and crochetting and making jewellery for as long as possible then I think I'll be happy :-)

I'll check back with my progress at a later date, but until then to cheer us both up, here's a piccie of some cute Husky puppies I found on the internet

TTFN
Loops
xx