Back Into Hell

[Brighteyes]

Well it's been a funny old week.
My psoriasis seems to have levelled out somewhat. Neither better nor worse.
No pustules but still prone to dryness ( which, if left unchecked, can tear). The heat is still a problem and they are still supersensitive. My toenails are the same. Neither getting better or worse.
Three achievements of note. One, that I managed to give my kitchen a lovely, deep clean. It took me 5 hours.
That doesn't mean it was filthy it means that I paced myself with plenty of breaks in between.
I booked a taxi on Saturday and took my boy to a Scarecrow Making Workshop where he made a couple of new little friends ( real people not scarecrows). And I got some adult company too......and free coffee. Yay!
And today I did the school run ( via bus & very steady walking). So many parents seemed genuinely pleased to see me and I was made quite a fuss of. It was nice.
Not so nice when I got home though and discovered that my boy had accidently ordered £40 worth of toys off Amazon.
That'll teach me to log out of my account BEFORE I let him loose on my laptop.
I went for my first massage/acupuncture session today and, boy, did she not have her work cut out. I have knots on top of knots to iron out.
Hardly surprising given how much tension I have been storing over the months/years.
I already feel a difference in my posture.
The one 'niggle' I have though is sleep. If I was on Australian time it would be perfect. But it's not stress or worry that's keeping me awake. I seem to have developed an insatiable appetite for reading (I have always been a reader but never on this scale).
I lay in bed and questions pop into my brain then I feel compelled to get up and start researching. Crazy!!!
So that's been my week and I'm still feeling positive, calm and smiling more.
Hope you all have had a fantastic week too.

[jiml]

What a positive post, but the psoriasis is an awful disease it is often quite difficult to shift but for you,.is it 10 or twelve weeks since you were put on methotrexate. And it has turned your life back around and given you hope.... It's not a drug I like but it works wonders and certainly suits you  
I am enjoying keeping up with your posts it's been quite a journey for you of late. You no longer sound so resigned , in fact the opposite you are so positive you have really picked yourself up
I'm so glad you kept your promise to yourself and went for the massage a bit of pampering is good and therapeutic  
Good for you doing the school run... It makes you feel part of life again    long may you continue to improve
and I wish you success in the future  
as for sleep if it doesn't interfere with your normal daily life I wouldn't worry unless you are waking tired
I have had trouble sleeping for years but I function normally by day so I ignore it and play online while everyone else sleeps  

[Kat]

I also have trouble with sleeping. I used to love to read, now it strains my eyes so I pace myself.

So glad that things are looking a bit better for you Brighteyes!

[mataribot]

I am not sure what I would do if I could not walk. I'm sure there will be a day that will happen, but I won't think about that. There are reasons why they took you off cyclosporine that probably have not been discussed. Cyclosporine is a far more dangerous drug than MTX. Typically a year is max they will keep on it. The drug is not only harsh on the kidney it rots away the heart.

Localized pp is extremely difficult to treat. While I understand the reasons for changing meds, I don't understand why they didn't give to a tapor of prednisone or something to ease you into the new treatment plan (unless they intended for it to fail).


Hope things get better...

[Fred]

Keep it up Brighteyes you're doing well, it's nice to hear you in a positive mood again.  

Shame about the £40 on Amazon (Clever Kid)  

[Brighteyes]

I am not sure what I would do if I could not walk. I'm sure there will be a day that will happen, but I won't think about that. There are reasons why they took you off cyclosporine that probably have not been discussed. Cyclosporine is a far more dangerous drug than MTX. Typically a year is max they will keep on it. The drug is not only harsh on the kidney it rots away the heart.

Localized pp is extremely difficult to treat. While I understand the reasons for changing meds, I don't understand why they didn't give to a tapor of prednisone or something to ease you into the new treatment plan (unless they intended for it to fail).


Hope things get better...

I was totally unaware about Cyclosporine rotting the heart.    And not sure what prednisone is.
I'm going to have to do some serious research.


On a lighter note: can't help wondering if my post has caused a tingling in jiml's pocket. *snigger*

[Brighteyes]

Well I'm still feeling more positive than not.  
Looking forward to my next massage appointment on Wednesday.
The only niggle this time is going to be Friday when my boy goes in for his operation. He's having plates inserted behind his ears to enable him to wear hearing aids without the headband he uses now. Because it takes a couple of weeks for them to fuse to the bone he will have to be 'aid less' for a while. I have lots of fun activities and hugs at the ready. Just nervous about the actual operation and will have to watch my stress levels.
Still not sleeping 'normally' but I've stopped worrying ( jiml's advice) about it. I don't seem to be suffering any ill effects. Maybe I just don't need as much sleep now I'm older.    Besides, I'm reading some fab books.
Will try to pop in more and check out the newbies more. I have been a bit rubbish lately. Sorry.

XXX

[jiml]

I am not sure what I would do if I could not walk. I'm sure there will be a day that will happen, but I won't think about that. There are reasons why they took you off cyclosporine that probably have not been discussed. Cyclosporine is a far more dangerous drug than MTX. Typically a year is max they will keep on it. The drug is not only harsh on the kidney it rots away the heart.

Localized pp is extremely difficult to treat. While I understand the reasons for changing meds, I don't understand why they didn't give to a tapor of prednisone or something to ease you into the new treatment plan (unless they intended for it to fail).


Hope things get better...

I was totally unaware about Cyclosporine rotting the heart.    And not sure what prednisone is.
I'm going to have to do some serious research.


On a lighter note: can't help wondering if my post has caused a tingling in jiml's pocket. *snigger*  

Oooooh yes and a great pleasure it was as well

[Fred]

Will try to pop in more and check out the newbies more. I have been a bit rubbish lately. Sorry.

No problem you don't have to apologise.

Oh and Jim gets a tingle at anything as he's easily pleased.

[jiml]

Well I'm still feeling more positive than not.  
Looking forward to my next massage appointment on Wednesday.
The only niggle this time is going to be Friday when my boy goes in for his operation. He's having plates inserted behind his ears to enable him to wear hearing aids without the headband he uses now. Because it takes a couple of weeks for them to fuse to the bone he will have to be 'aid less' for a while. I have lots of fun activities and hugs at the ready. Just nervous about the actual operation and will have to watch my stress levels.
Still not sleeping 'normally' but I've stopped worrying ( jiml's advice) about it. I don't seem to be suffering any ill effects. Maybe I just don't need as much sleep now I'm older.    Besides, I'm reading some fab books.
Will try to pop in more and check out the newbies more. I have been a bit rubbish lately. Sorry.

XXX

Must be scary for you waiting for the operation, my grandson who was 12 had cochlear implants fitted last year, we were terrified because up till then he had been managing with hearing aids and although not perfect he was able to hear and we worried that he may lose that ability, when they did his op he had I think two weeks of silence until they turned them on and it was a difficult time.. But long term well worth it
I'm sure your boy and I don't know his age, will gain long term benefits from the operation and I'm sure you will smother him with love for the two weeks without hearing
Good luck I hope all goes well  
I'm glad you have stopped worrying about sleep, if you need it you will sleep, that's my philosophy ...
I look forward to more pocket tingles