Been awhile.

[Ccrowlu]

It’s been a while since I’ve given an update but on Monday my mom will be making appointments for me and her at a clinic. She’ll be getting tested for RA and I’ll be getting a referral so the Rheumatologist has to take me no matter what. I will be making sure I’m put on what I need to be put on and hopefully I’ll get better and will manage to get up and move a bit more than I do now. Although today I needed to relax myself so I didn’t cut someone so I painted and am very proud of the result. It did hurt I’ll admit but for my first time with watercolors I think I did great.

[Mandy8175]

Hi! I was wondering how things were going for you!

The painting is wonderful, I am glad to hear that it relaxed you! I love to bake, so that's what I do to relax!

Please keep us updated, we are all rooting for you!

[Ccrowlu in reply to Mandy8175]

And of course I’ll keep you updated.

[Ccrowlu in reply to Mandy8175]

I usually draw,dance, sing, or write to relax myself but my hand and fingers are flared up today as well as my back and I didn’t have to move my hand much to make the painting so it worked out for me.

[Gnarli]

Well that is wonderful news. Let's hope this is your first steps on the road to recovery. Try not to be too impatient for improvement, though, as the majority of meds for RA can take their sweet time before they have an effect. 12 weeks or more for some. Please let us know how you get on at the appointment on Monday and I'll be keeping my fingers crossed for you. Hugs

Jan

[Ccrowlu in reply to Gnarli]

The appointment probably won’t be Monday but hopefully sometime during the next week.

[nomoreheels]

That's great news. Is that how it works, your mum had to be tested in order for you to be taken on? Please do update us when you've been seen, let us know what the Rheumy had to say. Don't expect miracles, not straight away anyhow! The very best of luck.

Love your painting, keep it up, you show real promise. All the better you enjoyed it despite feeling as you do, maybe it will relax you & help forget the pain for a while. x

[Ccrowlu in reply to nomoreheels]

She was going to get me in either way but she’s been hurting the last month so she says she’ll be tested to prove she has it so I can stop telling her that she doesn’t know if she has it cause she’s undiagnosed. But my parents over the past week have also been taking steps to try to make me more comfortable, like they got me a heated blanket which actually makes my knees feel better at night and help me fall asleep but when I wake up in the morning it seems to be 10 times worse than when I went to bed for a good hour or so.

[nomoreheels in reply to Ccrowlu]

I had to think carefully before replying & I don't like to say it because she's your mum & should be behaving as a mum should, with concern, but is she competitive with you? It's only from what I understand you're saying is that she's being tested to prove she has it, that the reason is so then you'll stop saying she doesn't understand. It's just that doesn't sound as if a mum should, a mum should hurt for her little girl because she's hurting not almost competing to have the same condition & it also seems odd she's started hurting so recently. Forgive me if I've misunderstood but I do hope that isn't the case.

However, I am pleased your parents have bought you a heated blanket, I also find heat helps my joints & pleased it's helping you too, so that's a positive. x

[Ccrowlu in reply to nomoreheels]

She is kind of competitive. She grew up where attention wasn’t given so she sometimes tries to take attention from my dad from me and my brother to her or just prove us wrong. And no matter if she has it or not she probably doesn’t have it as bad as I do because she can still do everything she’s always done. I on the other hand can do few of the things I like to do. And I do know she’ll never understand just how much pain I’m in even if she has it. I will say she once got angry that I could craft better than her. But that’s usually where that stuff ends. Plus medically she’s used to having it worse than me.

[nomoreheels in reply to Ccrowlu]

Ah, that makes sense, thank you for being honest & not shooting me down in flames. It's understandable having been without attention she probably deserved but it's unfair she competes for affection with her children from their dad. It's telling & must be frustrating for you that she can do everything she's always done when you know full well that's not possible when not on meds. Bless you, you need to be the focus of attention just now. It must be terribly difficult for your dad too, needing to wear his husband hat but also his dad hat too must be a juggling act. I'm not sure what you're meaning by saying she's used to having it worse medically but that's not important, you are.

[Ccrowlu in reply to nomoreheels]

She has had medical issues for years. From a very weak immune system to several miscarriages. She’s just always been medical issue prone.

[nomoreheels in reply to Ccrowlu]

Oh she has gone through it, I'm sorry. Well, let's see what comes of being tested & let's see whichever way it pans out you receive the treatment you're so in need of. x

[Hidden in reply to Ccrowlu]

The heated blanket is wonderful, but yes there are two things about it that are working against you. You feel better so you sleep longer without movement thus adding to the stiffness. The second thing is heat promotes inflammation. While it feels great, long bouts of warmth causes the blood/healing fluids to move into your knees to help heal it it. That also causes inflammation and swelling. Have you tried wrapping your knees with a compression bandage? Sometimes that helps.

[Ccrowlu in reply to Hidden]

I don’t know what a compression bandage is honestly.

[Hidden in reply to Ccrowlu]

Let's see, they are called Ace Bandages here. A roll of elastic bandage that you wrap around you knee-over and over again. Here, they are beige in color.

[Ccrowlu in reply to Hidden]

Oh. Now I know what they are lol

[LizzieR in reply to Hidden]

Thanks. That's interesting! X

[Jj01994]

I am so happy you and your mom are on the same page. I hope you get your appointment soon.

[Joolief]

Good luck, keep us posted. Hope you get some help very soon xx

[LizzieR]

Hi,

That's a beautiful picture! You show real talent. And I'm glad you have found something you can do even when in so much pain. I hope the appointment goes well- you need some help and I really hope you get it.

Do you mind me asking- are you still at school/ college? I mean I'm sure you are too Ill to get there at the moment but are you still enrolled somewhere? Perhaps when you get the right meds, you should think of art college!

Sending you lots of love x

[Ccrowlu in reply to LizzieR]

I am not in school anymore. We move too much and I had to drop out last year. I probably would’ve been held back several times cause I can’t learn properly. I also have memory issues so that never helped. I know that if I stayed in school this year I’d have been held back either way. I do wish I still was though. I miss socializing with real people.

[LizzieR in reply to Ccrowlu]

Hey, never think you can't 'learn properly'! If you are finding/ found it difficult, then you probably weren't taught properly- and I used to be a teacher and think that! Same with memory issues! Did you have a favourite subject at school? I only ask because learning can a)take your mind off your pain and b) it's your way to any life you want. You write and draw beautifully, so I'd say you were v intelligent. Don't let anyone- or this illness- tell you differently!

Promise not to 'mum' you again! X

[Ccrowlu in reply to LizzieR]

Thanks. But the only classes I passed were the classes that don’t count towards credits. Music and art class. But they took away both to put me in three back to back credit make up classes the last school I was in. Plus I just couldn’t absorb (the only word I can think of atm) the things the teachers were teaching me unless I was purely interested.

[LizzieR]

Oh I hate it when teachers- sometimes not their fault- stop you from doing things you are good at and force you to do tons more of the things you struggle with. If you're struggling they need to teach you/ approach the subject differently with you. Remember it's especially hard to learn anything when you are Ill so be kind to yourself. I don't know how it works where you are, but aren't there any community colleges etc you can access? Maybe ask the doc when you see him/ her. Even classes for fun can help- get you out and meeting people etc And that will help you handle the pain. Anyway- keep drawing ( and doing music) cos I for one think you are awesome! X

[Ccrowlu in reply to LizzieR]

I’m still in high school lol. College would be way too high level. I did ask my mom if I could go to an art class and learn hands on but she said we don’t have the money.

[LizzieR]

Ah! Sorry I didn't know how old you are. I was guessing 16 ish which in the UK means you could access Further Ed colleges- my children like them because it makes them feel more grown up than being at school.

Maybe you'll get back to a school when you feel better.

Art classes etc can be very expensive- but the internet is a wonderful thing so you could do a free online course. I'm doing a history one at the moment ( no tests etc- just for fun!) X Anyway, keep painting and showing us! X

[Ccrowlu in reply to LizzieR]

We don’t have WiFi here sadly and I only have my phone. I probably wouldn’t last long on it lol.

[LizzieR]

There you go putting yourself down again! Repeat to yourself 'I am awesome' Every day! Every hour! I'd say every minute but that might get boring!x

[Ccrowlu in reply to LizzieR]

I meant because my hands would get too agitated lol

[LizzieR in reply to Ccrowlu]

Lol oh ok. Sorry. I'm very old. Well, I'm 41 but no one has told my brain and it's given up already x

[Ccrowlu in reply to LizzieR]

Haha. I totally get that.

[Hobbledehoy]

I think you did great too - and not only for a first time! Keep it up. And good luck.

[Hidden]

Lovely pictures. Glad to hear from you, also positive news from you as well. Glad your parents are eventually paying attention to you, & trying their best in helping you. For your parents, a lesson is learned, & to keep on learning. Keep us all upto date as much as you are able.

Ruth x