Last week my doctor changed me over from daily Azathioprine to weekly Methotrexate. I couldn’t stand the side effects any longer and it wasn’t really doing much to help my eyes.
I am on week 2 of the Methotrexate, I spend 3 days crook as a dog (the day I take it and 2 days after), horrible but I guess it’s better than the 7 days I felt ill on the Aza. It’s unfortunate I take it on Fridays because I spend all weekend feeling awful then I’m back to normal again for work on Monday …. Hmmmm that was a bit of bad planning!
I’m starting to wonder if my eyes will ever improve, it always seems to be one step forward and then two back. It will be 2 years in November that I have been battling the scleritis, can’t believe how quickly time flies. But it’s not good when you think about it, nearly 2 years and they are no closer to finding out the root cause and really my eyes haven’t improved that much either. I have days where they are so painful I can hardly stand it.
My doctor always calls me a medical mystery and his VIP patient as I’m there every fortnight for my treatment. I guess when you have something relatively rare happening in your body that they can’t solve you do become a bit of a medical mystery. I have seen a rheumatologist, and probably about 6 different eye specialists and I’m still suffering with vision loss and chronic daily pain. The next step is the immunologist; my eye doctor has written a referral so I will see what they have to say when I get my appointment through.
I guess I just need to keep going, keep my mental health well and hope that one day I get some definite answers and a solution to the problem. I think the key for me is staying well mentally, if i’m good in that department I can cope fairly well with the pain and the daily struggle to see. I’m really working hard not to fall down that slippery slope to depression, so far so good!
This is so true, love this quote.
I have got so many health issues at the moment and I’m in daily pain but I am still so happy. It really could be a lot worse. For some crazy reason my mental health is great which is such a surprise considering the crap I’m going through.
I am in a really good place right now and I’m very thankful for that. When the pain wakes me up at night or I can’t see because my vision has gone all hazy I am thankful for the things I can still do to help myself and I’m thankful for the support of my beautiful family.
Life is good despite the hardships and I’m thankful for that.
Love a laugh and a good sleep so this quote is very apt for todays post!
I bought a few Faber Castell Albrecht Durer watercolour pencils to add to my Prismacolor range of colours. They are not as soft as the prismas but this means you are not sharpening them every 2 minutes like the prismas so they should last a lot longer. You can use them wet or dry and they are vibrant and nice to colour with. I like the idea of having the option of using them wet if I want to, nice to have the choice.
I’m working on an Animorphia piece at the moment, last night I used the Durers and used some Vaseline for blending. I was very impressed with the performance of the pencils so I’m certainly going to invest in a set. The Vaseline was fun to use, it made the pencils silky smooth and gave a nice finish.
As with any high quality art item they are expensive, but you really do get what you pay for. These bad boys really deliver. Now to save for a set!
I went to Kmart at the weekend and got some packs of 8 gel pens, then came home and packed them up with a colouring book. I have 9 sets to give away as gifts to mental health patients in my community.
I hope that whoever gets them enjoys the experience of colouring as much as I do and that it helps with their wellbeing.
It makes me feel so warm and fuzzy inside to be able to give these gifts and if colouring makes a difference to any of the recipients lives it will have been worth it.
I need more new colouring books to replace the ones I am giving away lol!
Since I started colouring my tastes have changed as I got a little better at it and saw what an amazing assortment of books are out there by some very talented artists. As a result I have probably 6-8 books or more that I know I will never open or that just has one page coloured.
The 6 above are my current favourites, a couple are still on their way and I cant wait for them to get to me. Anyway what should I do with the books im not going to use?
I have had an awesome idea (in my head its awesome anyway lol). My idea stems from the fact that colouring has really helped my mental health, colouring makes me happy and thinking about colouring and buying new supplies excites me. Anyway you get the point, colouring is amazing for mental health. So lets get back to the point in hand, my cunning plan ……
Next time I see my psychologist in a couple of weeks i will take my surplus books so that she can ask her other patients if they would like to try colouring. They can have a browse and take a book home to keep. These people may never have given colouring a thought and they should totally give it a go as it does help with wellbeing. I dont see a negative in this plan, but I will certainly check if its ok with her, I won’t just dump a bag of books on her desk! Also if nobody wants them I will take them back, she won’t be left with a stack of books.
I might also buy half a dozen packs of cheapo gel pens so that the people who want to give it a go will have a starter set to get them going.
What do you guys think? Win or Fail?
Am feeling a bit low right now, my eyes are in a shocking state and I cant see any end to it. I still have practically no vision in the left eye, its just a white fog and the right eye is red and sore. The combination of two severe eye diseases (keratoconus and scleritis) is taking its toll on them.
I had an orbital CT scan last Friday and I am seeing the eye doctor tomorrow hopefully to get some help. I am really struggling at work, reading paperwork and the computer screen is a real challenge at the moment. Luckily I have the BEST boss, he is very in tune with my illness and helps me as much as he can.
Although it is a struggle to see I am finding my colouring really helpful. My lovely partner got me a set of magnifying goggles with a light on and they have made so much difference. Its so difficult to colour when you only have partial vision in one eye but I am still enjoying it and it takes my mind off of things. This is my latest piece from Alices Adventures in Wonderland. I think if I didnt have my colouring I would go nuts right now, it is very therapeutic. I also rely heavily on reading to keep my mental health stable. I read on my tablet where I can make the text gigantic so that I can see it. I am having to use a magnifying glass to see the screen on my phone and tablet at the moment so the eye situation is not good.
Hopefully will get some positive news tomorrow. Sorry for any typos, im not seeing so well so its difficult!
This is how I try to live my life.
I have been in a lot of pain this week and it’s making me feel cranky. I’m over it and want it to go away.
Bipolar bear is definately trying to knock my door down, can’t let him do that so I am turning to my weapon of choice books! Reading is so hard with chronic eye pain but seriously it’s the only way I can get through my days. I lose myself in a good book and the world feels right again. Some how when I am transported in to a fictional characters life the pain and depression seems to fade away a little. I get a feeling of serenity.
I’m doing OK on my goodreads chalenge for 2015 I’m at # 76 of 100.
I found this quote and really liked it, I have no idea who drew it but it’s beautifully done.
This week is mental health awareness week. Lets show some support for those who suffer with mental illness, an invisible illness.