Miss Nomer's Excellent Adventure

Miss Nomer's Excellent Adventure







Thursday, 1 September 2011

Spring has sprung and I'm feeling a bit better.

Well I've been a bit crook for the past month. I've struggled with a condition called Still's Disease since I was a kid. I always have a bit of arthritis because of the joint damage resulting from this but sometimes, not often, I will have a major flare. This one is only the fourth one in my life but when they hit they are big. The last one was 4 years ago and I ended up in hospital delirious with fevers and red skin from head to toe. It was a frustrating time as I'd known I was getting very ill when my arthritis got very bad so that I could hardly walk and I saw the first sign the feint non-scary looking Still's rash. The problem was I couldn't get my doctor or my husband to take it seriously. The doctor came to visit me at home because I couldn't make it down the road to his surgery and he assured me it was just a virus and to wait and see. I was fuming as I told him it was the Still's rash but he didn't listen. My dear husband also seems to shut down and deny the severity of these times by ignoring it as much as he can. But I have learned not to hold it against him, this time, *much*. I guess he is not much good at coping with crisis. And crisis is how Still's presents.

Anyway, this time I let it not go as far. After 3 weeks of severe arthritis I called my parents for help once I could no longer get around the house, it was a while after the rash made an appearance but BEFORE the fevers took hold. They have seen me struggle with this enough to become urgent and they came over that day and took me to hospital. I did not end up staying in hospital because I cannot stand to but I did see a fantastic doctor who has begun a treatment plan with me and I am feeling a lot better.

After 3 weeks of practically being bed-ridden and housebound it is hard not to over-do it as soon as I can walk a bit! Today is the first day of Spring!! It is a beautiful sunshiney day and my garden has been neglected for long enough. I am not quite well enough to do what I want to do which is plant things in the ground but at least I can attend to this and that and give them a little feed and water. I did manage to plant my poor camellias which have been languishing in the their tiny tubes for far too long. And I can walk around the yard and LOOK. There are tiny flowers popping up here and there and our new tree is blossoming magnificently. It is a Cercis Chinensis 'Avondale' aka as a Chinese Redbud. I have never seen one in real life before, I found it online on an ornamental tree site as a recommended small tree that is not well known in Australia. I was nervous about transplanting it because it says they are fussy but it looks happy enough now.








































I have bought a couple of new plants in the last few of days since I felt better. I can only walk a very little so far so I thought the nursery a good place to visit for fun and a little exercise now that there is some new Spring stock in. I got some more nemesia because the other blue ones I bought are doing so beautifully. I got a pink one as well. And I finally got a spoon osteospermum (daisy) that I have been eying off for a while.





















2 comments:

sherryocala said...

Hi, Miss Nomer, I was so glad to see that you have started following my blog. It's a real thrill - like finding a new true friend. I'm also glad to know that you're feeling better after this last bout with Still's Disease. I have Rheumatoid Arthritis but had not heard of Stills. The treatment appears to be much the same as mine has been. I currently take methotrexate, Plaquenil and a biologic called Enbrel. The Enbrel is wonderful!! It has stopped the disease, so my joints are no longer inflamed, painful and becoming more deformed. I wish I had started on it sooner (4 or 5 years ago). I am able to garden strenuously still (at age 61) but no longer sew because my fingers are no longer nimble enough. I am happiest that the deterioration has stopped, but only as long as I take the Enbrel. Mine started when I was 34 unlike yours, and of course, I don't have the fevers and rash that you have, but I always urge people that I meet who have RA to deal with it aggressively. Joint damage can not be undone or even fixed since joint replacement is a poor substitute for the real thing. Plus there's the systemic internal damage that can be happening that we can't even see. I'm glad your doctor has you on a good therapy, but please see if any of these other medications are available for you. I saw a little girl in one photo on your blog, so I'm guessing that you're still young with a long life ahead of you. Make sure it's as healthy as possible. You've probably googled Still's, but here's a link that includes information on the medications. The methotrexate and generic Plaquenil are very inexpensive here but the Enbrel is not. Perhaps it's less expensive in Australia. http://www.medicinenet.com/stills_disease/article.htm

I love all of your blue flowering plants. We have lots of Redbud trees in this part of Florida. They're beautiful in the spring. Your Eden rose (Pierre de Ronsard) is a heart stopper that I would love to be able to grow, but I'm afraid my humid climate would make it a black spot magnet. I look forward to seeing your future photos of it and all of your garden. Hopefully, you will be digging up a storm very soon and all of your potted plants will have homes in the ground.
Take care!

miss nomer said...

Hi Sherry!! Yay a comment!! LOL. I'm sorry I have been away from my blog a while and I've just seen your comment. Thank you so much for posting! I have been having a tough time with the Still's thing. I have had experience with the meds you are talking about except for the Enbrel. I have heard a lot of people from other countries talking about Enbrel online (and other biologics) but have I have never been offered them.. they must be very expensive here too. Rheumy's were really pushing methotrexate last time and I was very reluctant to try it again as it made me feel very depressed and apparently I was blank with no personality while on it as lovely ppl informed me. The last time was worse... my hair started falling out! The docs wanted me to up the dose even more because it was still ineffective but there was no way I could cope with getting fatter (from steroids) and being bald as well. They seemed to think I was unreasonable as my hair would grow back eventually once I came off it after a couple of years or so!! Yeah no worries! Plaquenil gave me very bad mouth sores and itchy rashes. I am trying to cope with as little meds as possible but really I am only rejecting the ones that are ineffective/have unbearable side effects. Currently I am on painkillers, ibuprofen & prednisone and having a tricky time trying to reduce the pred without flaring.

Yes I am pretty young to have granny bones. I'm 32 and have had the Still's (aka systemic JRA) since I was 10yo so I do have a fair amount of joint damage already. It was suggested I have a hip replacement at age 22 but decided I will hold out as long as I can because those things aren't guaranteed to last a lifetime.

I'm sorry to hear you are suffering with arthritis too. I hope you are feeling better at the moment. I'm sorry you've had to give up sewing. I can't sew well anyway but it is fun to try sometimes. I wish I could sew!! I have lots of ideas. I have had to have a huge break from another hobby which is customising Blythe dolls and ball-jointed dolls because of my hands too. It is frustrating isn't it!!

Thanks for your comments I love your blog & the pictures!

PS My PDR blackspots hideously too but it recovers quickly.