Re: what does everyone do?

[Guest guest]

Hi ,

Well unfourtuantaly I look the part. I have had Stills for so long my bones have fused. I can't move my wrists or turn the hands over, my fingers are fat and small, my knees don;t go straight or do my hips. I use crutches to get around have since my last flair. I have it everywhere and it too months before the Preds kicked in. Not only that but I am very pale. So most will aske me if I am feeling alright. LOL

I had to use pain pills a few months ago because the pain was so bad nothing else helped. But they made me too sleepy to do anything else and had to take three a day. So I couldn't even work if my life depended on it.

I am so sorry to hear you are going through this now. I sure can feel for you and what it must be like for you while working. You are in my thoughts.

Hugs; Gingernicoledalton@... wrote:

Hello beautifuls,

It's . I pop up now and again but am always reading the e-mails. What do you all do when you flare? when it hurts so bad that a vicoden won't even cut it and you take 3 and still nothing. How do you get around and do everything you have to do in life? I'm in a flare. Waiting for the meds to kick back in fully. Had a bad lung infection, had to go off meds, was off too long, and am now flaring. It's starting to get better but I just wonder how we all get our stuff done. Telling people around you so they don't think you're just being lazy. I don't really look sick except I can't walk and my move my hands very well. But I don't look like I'm at deaths door. However I feel as if I've been beaten with a hammer.

What do you tell people? What do you do for pain? I have to work twice a week very late at night(when I'm at my worst)as a cocktail waitress. I can't do it with out vicoden. I only take it when I work but could really use it more. It justs feels like things are crushing me and like my hands are on fire. What do you all do?

I hope everyone else is feeling great and has a great day.

Much Love to everyone,

-------------- Original message -------------- > > Hello > I went to the docs today and found out there is nothing wrong w/ my > lungs YEA! lol I have chronic sinusitis and he told me to use tylenol > sinus. I started it today and it seems to work. What I thought was > coughing up blood was from my sinuses being to dry. My sed rate is low > too, 12-14, it was at 100 last year. There is not much can be done for > my pain except take pain meds. I am in a lot of pain. > I hope you are all doing pain free and non stressed today! thankyou for > listening... > love xxxooo > Sharon > > > >

[Guest guest]

Thank you to everyone who responded. I really appreciate it. Ginger I'm so sorry you feel bad. I've had stills for 15 years so my hands look a bit of a mess. I have a good support system but it's hard for my 25 year old friends to get that I may need their help and not always be able to help them. My work has been very understanding.

I just went out on a Humira commercial!! It was really fun not having to hide my JRA. I might look too young though. I'm not the typical face of RA. The casting director was so nice though and made me feel good. It would be nice to get a national commercial out of this though.

I hope everyone is feeling good today. Am having a Christmas party on Sunday. That should be interesting since I expire around 8PM but my roommate really wanted to have one. It's had saying no to people.

Love to all,

-------------- Original message --------------

Hi ,

Well unfourtuantaly I look the part. I have had Stills for so long my bones have fused. I can't move my wrists or turn the hands over, my fingers are fat and small, my knees don;t go straight or do my hips. I use crutches to get around have since my last flair. I have it everywhere and it too months before the Preds kicked in. Not only that but I am very pale. So most will aske me if I am feeling alright. LOL

I had to use pain pills a few months ago because the pain was so bad nothing else helped. But they made me too sleepy to do anything else and had to take three a day. So I couldn't even work if my life depended on it.

I am so sorry to hear you are going through this now. I sure can feel for you and what it must be like for you while working. You are in my thoughts.

Hugs; Gingernicoledalton@... wrote:

Hello beautifuls,

It's . I pop up now and again but am always reading the e-mails. What do you all do when you flare? when it hurts so bad that a vicoden won't even cut it and you take 3 and still nothing. How do you get around and do everything you have to do in life? I'm in a flare. Waiting for the meds to kick back in fully. Had a bad lung infection, had to go off meds, was off too long, and am now flaring. It's starting to get better but I just wonder how we all get our stuff done. Telling people around you so they don't think you're just being lazy. I don't really look sick except I can't walk and my move my hands very well. But I don't look like I'm at deaths door. However I feel as if I've been beaten with a hammer.

What do you tell people? What do you do for pain? I have to work twice a week very late at night(when I'm at my worst)as a cocktail waitress. I can't do it with out vicoden. I only take it when I work but could really use it more. It justs feels like things are crushing me and like my hands are on fire. What do you all do?

I hope everyone else is feeling great and has a great day.

Much Love to everyone,

-------------- Original message -------------- > > Hello > I went to the docs today and found out there is nothing wrong w/ my > lungs YEA! lol I have chronic sinusitis and he told me to use tylenol > sinus. I started it today and it seems to work. What I thought was > coughing up blood was from my sinuses being to dry. My sed rate is low > too, 12-14, it was at 100 last year. There is not much can be done for > my pain except take pain meds. I am in a lot of pain. > I hope you are all doing pain free and non stressed today! thankyou for > listening... > love xxxooo > Sharon > > > >

[Guest guest]

Hello . When I am "hurting" (most of the time) I just keep on pushing. I do take Fiorinol every 4 hours, Vicodin as needed and Percocet when my headaches come to torture me.

I have been able to work, but some days I am physically useless. One of the nice aspects in my line of work is the knowledge & experience I possess, as this allows me to simply "assist" others to speed the job along. I also do a lot more diagnostic work than I used to as much of this kind of work is 95% mental and 5% physical. Regardless of how I am doing, I must work, and thankfully have only missed two days outside of hospitalizations and Dr. appointments. I think it is mostly stubbornness that drives me, or total stupidity, I suppose time will tell.

I would say that if you need the pain meds, that is why your Dr prescribed them. I had about a month long episode that really hasn't ended where I had to take pain meds every 4 or 5 hours, and this includes waking up in the middle of the night in total agony. This week I have taken a grand total of 2 Percocets and 4 Vicodin, with the Percocets being taken today. If they allow you to live a little better, than use them. I am no lover of pills and intentionally make myself go without them (when I think I can pain-wise) just to be sure my body is not addicted to them. So far,so good.

Best of luck, Kirk

what does everyone do?

Hello beautifuls,

It's . I pop up now and again but am always reading the e-mails. What do you all do when you flare? when it hurts so bad that a vicoden won't even cut it and you take 3 and still nothing. How do you get around and do everything you have to do in life? I'm in a flare. Waiting for the meds to kick back in fully. Had a bad lung infection, had to go off meds, was off too long, and am now flaring. It's starting to get better but I just wonder how we all get our stuff done. Telling people around you so they don't think you're just being lazy. I don't really look sick except I can't walk and my move my hands very well. But I don't look like I'm at deaths door. However I feel as if I've been beaten with a hammer.

What do you tell people? What do you do for pain? I have to work twice a week very late at night(when I'm at my worst)as a cocktail waitress. I can't do it with out vicoden. I only take it when I work but could really use it more. It justs feels like things are crushing me and like my hands are on fire. What do you all do?

I hope everyone else is feeling great and has a great day.

Much Love to everyone,

-------------- Original message -------------- > > Hello > I went to the docs today and found out there is nothing wrong w/ my > lungs YEA! lol I have chronic sinusitis and he told me to use tylenol > sinus. I started it today and it seems to work. What I thought was > coughing up blood was from my sinuses being to dry. My sed rate is low > too, 12-14, it was at 100 last year. There is not much can be done for > my pain except take pain meds. I am in a lot of pain. > I hope you are all doing pain free and non stressed today! thankyou for > listening... > love xxxooo > Sharon > > > >

[Guest guest]

Hi ,

Oh don't feel bad. I have had my Stills for many many years. I'm not the kind of person who goes and looks in the mirror everyday and looks at how bad I look. I have children and I fill their needs with food and outings and stuff so I am just trying to do the everyday normal things parents do. LOL

Sounds like your party will be fun. Hope your roommate will help you out. I know what you mean about expiring early. I do too. After a hard day of doctors appoitments and shopping for food or the Holidays I am so tired by the end of the day. I say around 9 is when my body just wont get up and go anymore. LOL

Hugs; Gingernicoledalton@... wrote:

Thank you to everyone who responded. I really appreciate it. Ginger I'm so sorry you feel bad. I've had stills for 15 years so my hands look a bit of a mess. I have a good support system but it's hard for my 25 year old friends to get that I may need their help and not always be able to help them. My work has been very understanding.

I just went out on a Humira commercial!! It was really fun not having to hide my JRA. I might look too young though. I'm not the typical face of RA. The casting director was so nice though and made me feel good. It would be nice to get a national commercial out of this though.

I hope everyone is feeling good today. Am having a Christmas party on Sunday. That should be interesting since I expire around 8PM but my roommate really wanted to have one. It's had saying no to people.

Love to all,

-------------- Original message --------------

Hi ,

Well unfourtuantaly I look the part. I have had Stills for so long my bones have fused. I can't move my wrists or turn the hands over, my fingers are fat and small, my knees don;t go straight or do my hips. I use crutches to get around have since my last flair. I have it everywhere and it too months before the Preds kicked in. Not only that but I am very pale. So most will aske me if I am feeling alright. LOL

I had to use pain pills a few months ago because the pain was so bad nothing else helped. But they made me too sleepy to do anything else and had to take three a day. So I couldn't even work if my life depended on it.

I am so sorry to hear you are going through this now. I sure can feel for you and what it must be like for you while working. You are in my thoughts.

Hugs; Gingernicoledalton@... wrote:

Hello beautifuls,

It's . I pop up now and again but am always reading the e-mails. What do you all do when you flare? when it hurts so bad that a vicoden won't even cut it and you take 3 and still nothing. How do you get around and do everything you have to do in life? I'm in a flare. Waiting for the meds to kick back in fully. Had a bad lung infection, had to go off meds, was off too long, and am now flaring. It's starting to get better but I just wonder how we all get our stuff done. Telling people around you so they don't think you're just being lazy. I don't really look sick except I can't walk and my move my hands very well. But I don't look like I'm at deaths door. However I feel as if I've been beaten with a hammer.

What do you tell people? What do you do for pain? I have to work twice a week very late at night(when I'm at my worst)as a cocktail waitress. I can't do it with out vicoden. I only take it when I work but could really use it more. It justs feels like things are crushing me and like my hands are on fire. What do you all do?

I hope everyone else is feeling great and has a great day.

Much Love to everyone,

-------------- Original message -------------- > > Hello > I went to the docs today and found out there is nothing wrong w/ my > lungs YEA! lol I have chronic sinusitis and he told me to use tylenol > sinus. I started it today and it seems to work. What I thought was > coughing up blood was from my sinuses being to dry. My sed rate is low > too, 12-14, it was at 100 last year. There is not much can be done for > my pain except take pain meds. I am in a lot of pain. > I hope you are all doing pain free and non stressed today! thankyou for > listening... > love xxxooo > Sharon > > > >