Thank you all & some medical news ....

DebbieT

Hello all,

Firstly can I thank you all for the amazing support throughout my Dads illness & death, the funeral is on Friday 1.45pm. Im reading this;

Our Father Kept A Garden

Our Father kept a garden.
A garden of the heart;
He planted all the good things,
That gave our lives their start.

He turned us to the sunshine,
And encouraged us to dream:
Fostering and nurturing
The seeds of self-esteem.

And when the winds and rain came,
He protected us enough;
But not too much because he knew
We would stand up strong and tough.

His constant good example,
Always taught us right from wrong;
Markers for our pathway that will last
a lifetime long.

We are our Fathers garden,
We are his legacy.
Thank you Dad we love you.

Author Unknown.

**************************************************************

I had a CT scan done in august to see if I had scarring from Mtx. I received a letter from my respiratory consultant at the end of last week, my lungs are clear of scarring but do show I have Emphysema from smoking I'm very glad I have already quit smoking the cigs!!! It's THREE MONTHS tomorrow
I've been upset by the diagnosis but I think it's had more to do with Dad having had it & then dying due to lung cancer than me actually getting the diagnosis!!

I saw my Dermatologist today ... She was suitably shocked at how bad 3 months of no mtx has made my skin. I'm covered in Psoriasis from scalp to feet & everywhere in between It's unstable, mine always is for some unknown reason. It's bright red, hot & very painful, my Mum told me today it looks like burns, cheers Mum
She has decided to keep me off of mtx as it took 2 years to clear me of psoriasis & I was on high doses of 25-30mg a week. Wen it arrives I'll be starting Ciclosporin. Has anyone else had this? For Psoriasis not a organ transplant She said it'll start working in 3-5 days, we shall see. She also said she doesn't feel it will work particularly well for me but she's following NICE guidelines & thinks she'll be able to put me on a biologic in the not too distant future. That's great news coz the Ciclosporin will only treat the Psoriasis not the PsA but a biologic should treat both

I've had some more numbness & tingling in my face etc (It kinda feels like after uve been numbed by the dentist, cold-ish too)
The Neurologist said it was all to do with Complex Migraines & put me on Topiramate, that works wonderfully for headaches & migraines but these sensations have continued. I finally told my GP, after all it's carried on since May ... Oops
She thinks as it's no longer restricted to one side of my body & all of the other symptoms are gone, that it could well be something else!! We both think the 1.5cm pineal gland cyst is a good contender, the Neuro disagrees, but she's requested that they see me again pronto ... 3 wks later I've heard nothing so things are moving at their usual speed!! :roll:

Well I think thats roughly all for now, well I could go on but I'm boring myself so I dread to think how you feel trying to read it ..... Sorry.

Thank you all for the support once again.xxx

thistlegirl

Oh debbie, you are going through it just now aren't you.

I am sorry to hear of your loss, I love you reading, I have never seen it before but it tells me a lot about your dad and his relationship with you.

What a lot of medical things to have thrown at you at once. If you are anything like me you have been focussing on being with your family and not wanting your health to stop you? It looks like now things have been set in motion to get things sorted, at NHS speed anyway.
NICE- yes sometimes it is really frustrating to have to follow their rules- you would think they would realise that we all react differently to drugs so some flexibility would help??
Your doctors seem good? I hope they are if not get nagging them, you have put up with this for long enough.
All I can recommend is what worked for me when I was waiting for results, I called it operation keep busy. I had something to ocupy me from the moment I woke up to when I fell asleep- books, work, knitting, tv, box sets. a mix of easy and tough things depending on what I needed.

big hugs and here if you need me(((((()))))

Jenny

DebbieT

Thank you Jenny. That's so kind Im considering altering the final verse slightly as it ends abruptly I think. I hope you'll all be honest

We are our Fathers garden,
We are his legacy.
Thank you Dad, we love you,
Now & eternally.

**************************************

Yes I'm very lucky. My GP can kick up a fuss wen she needs too & my Dermatologist has rang me at home from her sick bed to sort meds out for me wen I had glandular fever 2 years ago, Impressive!!

I'm less impressive it has to be said as i have coasted along with OA & PsA without much care. I'd attend my consultant appointments twice a year, take my meds & have my blood tests but thats all I did. I have what my rheumy diagnosed as severe fibromyalgia. She was very interested in the syndrome & we spoke about that far more than arthritis & now I'm paying the price. It's my own fault tho :? :roll:


The NICE guidelines should be only that ... Guidelines. They're used as law tho it seems. Consultants are too afraid to do anything against them even wen its in the patients best interest. I'm sure there are cases of great importance where they can be ignored, I hope anyway!!! It's nice to know she's thinking about biologics in the future, it gives me hope & I may get some relief for my skin in the meantime so it was very productive


With wots been happening with Dad, helping Mum re paperwork & organising the funeral etc I've been very busy, that will change from the week end onwards tho. I think I may sleep for a week Then catch up on tv, in here, Facebook & I may well read ... I have hardly looked at a book (well tablet) this year, so I'll look forward to the possibility

Sorry I've rambled on again :?

(((( )))) xxx

thistlegirl

I love the addition and I believe that the fact that you have thought of it means it needs to be added.

I think we cronic disease people get very good at coping with things and not raising a fuss. How many times do you respond "Im fine, doing ok!" when people ask you how are things. If we were really to tell them and therefor take account of what we have actually been through to get out the house today to meet them it would seriously affect the mood. Not what you want when you are meeting up with friends for a chat! You want to laugh, have fun, not be pitied, there are times for that but not always.

Yes I have suffered from being interesting too. it is like they put everything under this arthritis umbrella- jra in my case., and they can't see anything else. I have started writing my points down that I want to get across now, and I bring the paper out. at the end of each appointment my gp now asks if we have covered everything?

Oh to sleep, as you can guess by the timings of this post that is evading me at the moment due to high dose steroids. Unless it is being messed around with chemicals I am a strong believer that you will sleep for as long as your body needs, so enjoy next week, get your fridge stocked with good food and listen to your body.

Aren't tablets the best invention ever I get amazon vouchers for giftsnow as I download so many books.

here's to some sleep for both of us,

Jenny

DebbieT

I'm so sorry ure struggling to sleep, I empathize as I have insomnia (a fibro symptom apparently). I've had it on & off since my early teens. I do get times where the fatigue overrides it ... Not often enough tho
I learned a long time ago to sleep wen I can not wen Drs tell me its a 'healthy sleep time' etc Wot would they know unless they suffer with insomnia & fatigue combined!!

Jra seems so unusually cruel I can barely read posts in the younger people & parents sections, it breaks my heart!! Did it burn itself out & develope into adult RA or is it a natural & expected transition? Gosh, I hope you don't mind me asking?

I used to think people actually wanted to know wen they asked how I was, I cottoned on quite quickly that they only wanted a positive response or none at all. I felt so silly once I realised but we live & learn.

I have the Kindle Whispersync App on my Windows Phone, Laptop & Tablet Loads cheaper than buying their Kindles but works like one

I'm going to try some relaxation techniques, hopefully I can trick myself in to sleeping.

Thank you Jenny, it's really appreciated. ((((hugs))))

xxx

thistlegirl

just given in and taken a sleeping tablet so waiting for it to kick in, the relaxation didn't work tonight.

snap in the kindle apps brilliant and freè!!

I consider myself lucky in some ways, I have had JRA since I was 18 months old so I have never known any different. It came and went til my late teens then decided to stay and never leave. Over all intil I hit 30 it stayed the same but I think then the monster changed, my doc says I will always have JRA but she aggrees that it is changing it's rules. Overall I am winning the fight, my joints look good considering the years they have had with arthur and ignoring my present hiccup life is good. I think having never had the idea that I can control what my body does has made me more...accepting is wrong cause I wont go down without a fight...I think I have always thought I cant do it this way because of arthur but I can change things round a bit and do it this way instead, does that make sense? I have had to do things my way or I would have to miss out completely, and that wasn't going to happen
example- in primary 7 my class went weekly for skiing lessons and I wasn't allowed to ski because I was fragile-doctor! So my mum talked to the school and I went along as official photographer instead, lots of rides in the chair lifts and still very much involved!

I can't imagine not sleepihg for so long, I can't function, how do you do it?

slumber awaits in the distance- I hope, catch you again soon, whenever you need it.

Ps I reserve the right to claim altered mental state when I look at this tomorrow and it is a ramble filled with spelling mistakes :roll:

Jenny

dreamdaisy

I took cyclosporin for a couple of years. Like many meds it's a 'cross-over' treatment so yes, it can be used for arthritis as well as an anti-rejection med. It didn't touch the PsA but I did gain a lovely hairy body - my rheumatologist warned me about that and I didn't care as long as it helped. I was slightly miffed when I became a blonde werewolf but things did not improve. I hope it helps you. DD

kentishlady

Hi Debbie. Just wanted to say that I will be thinking of you tomorrow and hope that all goes as well as possible for you. That is a lovely reading. Take care. Beryl (())

DebbieT

Thanks DD. She told me it wouldn't help the PsA only my skin & as she's my dermatologist I felt that was fair enough. I was warned about the side effects ... I think a blonde werewolf is preferable to a brunette :shock:


Thank you Beryl. I'm so glad you like it too I hope I'm strong enough to get through it ... His coffin is being piped in to Flower of Scotland. The bagpipes always make me cry even at weddings so I'm going to need a titanium backbone tomorrow!!

Jenny, you had a sensible Mum there, that's exactly wot you needed. Wot an inventive way to stay involved Wot ure going thru now is awful hun. Ure brave with how you're handling it all ((((squishy hugs)))))

You actually become accustomed to living on 2-3 hrs sleep, Sounds unlikely but its true. Then eventually after a year or sometimes less ure body shuts down & hands itself over to the bone crushing fatigue. Then I can sleep for 18 hrs per day but it often isn't restorative sleep so it leaves me more exhausted than ever then once thats over I may get a few nights or few weeks of proper sleep, 5-7hrs, I love those times

I think you were very coherent for stupid O'Clock

Take care.xxx

barbara12

Hello Debbie
What a lovely verse..thankyou for sharing it..
I am so sorry you are suffering like this, I should think everything you have gone through lately is adding to this.
Sorry I cant offer any advice apart from look after yourself..(((())) xx

mig

Got a lump in my throat reading this and thought of my late father,good luck. Mig

thistlegirl

MORNING!!
hi Debbie, I read it is goinf to be a cold winter so maybe being a werewolf will keep you cosy

I think I would have been sectioned by now if I had your "sleeeping" pattern

big hugs I hope this weekend goes well if we don't hear from you till after, but here if you need us.

sleepy hugs ((((((())))))

jenny

destiny0321

lots of hugs are being sent your way i lost my dad 21 yrs ago & it is as if it was yesterday still,hope all goes well be strong.xxx

kentishlady

Hi Debbie. I love 'Flower of Scotland'. It nearly moves me to tears and I'm not Scottish! Can imagine how you will feel and will be sending lots of thoughts and prayers your way. Take care of yourself. Beryl. ((((()))))

Megrose489

I'll be thinking about you tomorrow, Debbie. It will be a difficult day, I know. Look after yourself.

Meg

phoenixoxo

Hi Debbie,

That's a beautifully heartfelt poem and lovely choice of music. I'll be thinking about you tomorrow too

I hope the cyclosporine works to treat both your Ps and PsA, likewise I hope the neurological stuff will be sorted soon. And none of this is boring!

Best wishes,
Phee

Toots

Debbie, that reading is beautiful, especially with your ending added.

I will be thinking of you, my lovely, and your family. Hugs xxx

DebbieT

Awww thank you all again. Ure kindness & support makes such a difference to me ... It sounds a bit silly to say that but I genuinely mean it!! ((((hugs))))

Jenny ud be surprised at how little sleep you'd cope on, I'm a Mum of 4, oh ok they're all adults now, & my 2nd Grandchild is due next month Not bad for 43 yrs old it's just a shame my body is rubbish :? I hadn't considered the benefits of being extra hairy in a bad winter

I've never been to Scotland but Dad was very proud of his roots, he was from Wick

Right, I've got to get in the shower. Thank you all.xxx

stickywicket

You're a strong person, Debbie. I hope tomorrow goes as well as possible.

kentishlady

Am thinking of you Debbie. Beryl. ((()))

dreamdaisy

I am thinking of you. DD

thistlegirl

Just to say I have been thinking of you today, hope you are doing ok

(((((huge hugs)))))
Jenny

DebbieT

Today went as well as these things can I believe The Officiate really must have listened wen we were talking coz the things he said took you from Dads birth in Wick to his passing last Sunday. He made us all laugh re-telling some old Army stories

It was a wonderful service, full of family & friends as well as old comrades of Dads. The eulogy my husband wrote had people laughing then crying. The whole thing seemed to hit all the right notes, Dad would've approved I think

I made it thru my reading, just. My Dads RSM said 'Debbie you did ure Dad proud. You showed uve got inner strength, class & dignity young lady' then wrapped me in a bear hug!! Aww did it make me proud to hear that from him. He behaved better than Dad in the Regiment & was an officer wen he left the army, but he always stayed friends with Dad. Him & his wife, Pam, knew me wen I was a twinkle in my Dads eye.LOL

I walked without aids today, my body knows it now, but wanted to do it coz the thought of getting up in front of all those people was hard enough ... Id have tripped or sumut

I think I'll take a few days, maybe a week, to finally let the loss sink in, So if I'm not about you know why. Thank you all again, it gave me added strength.

xxxx

Boomer13

Sending hugs Debbie, sorry for the loss of your dad.

Take care((()))
Anna

DebbieT

Thank you Anna (((( ))))

Hugs are always appreciated

xxx

stickywicket

Well done, Debbie. That must have been an ordeal.

Take all the time you need. This is about you and your Dad, not us.

Have a few of my rare ones ((()))