Some prayers and positive vibes please.

[floweravalanche]

Thanks Carek!

I just got back from the ultrasound now just have to wait for the tech to go over the results than the doc and go from there.

Just know it kind of hurt when the tech was doing the ultrasound, everytime he went that one spot that has been brothering me the most I was like.

 

[floweravalanche]

oy it doubled posted

 

[last unicorn]

I keep you in my thoughts and prayers and hope everything will turn out ok. Just keep us updated.

 

[floweravalanche]

Sure will! Thanks LU :hugs:

 

[Carek1230]

Been thinking about you.

 

[floweravalanche]

Thanks Karen! Means a lot

 

[last unicorn]

I just came home from a workshop. How are you doing?

 

[floweravalanche]

I'm hanging in there, I haven't heard anything about the ultrasound so I'm assuming everything was alright. I've been a little bit stressed out and in some pain, causing me to have some anxiety attacks, but I'm hanging in there, it's just embarassing when 'm at work and I try to not show that I'm in pain and what not and all of the sudden I break down in tears.

I'm still playing be ear going to see how I do the next couple of weeks and than see my doc if I continue to have more problems or it just gets worst and so on.

Thanks for checking up LU! Means alot!

 

[last unicorn]

Do you have someone to talk to? Don't be embarrassed for your feelings, it's totally natural to react that way in such a situation. You should really take your time and try to make some room for yourself. If it helps, you may want to seek some councelling, someone who's specialised in dealing with a situation like this. Try to do some relaxing stuff, like meditation. I'm sure you'll be fine

 

[floweravalanche]

I use to talk to people, but I don't as much anymore for a lot of reasons,it's a trust factor.

I tend to listen to music or play on my bass or violin and sing to distract myself or do something artsy or simply just cuddle with my kitty and sing to my bird . My pets are my best friends, I have one good friend that live a couple hours from me I always call and talk to she has been helping a lot as well.

 

[last unicorn]

That's good to hear

 

[Rachel D.]

I hope you get to feeling better soon!

 

[floweravalanche]

Thank you Rachel!

I'm hanging in there, just hating when people ask me now what's wrong with your face? when I have a flare up which causes my face to turn red particularly from my checks and around my eyes and nose. It's not that bad, but peple sure like to make it sound that way.

I'm doing good though, not letting whatever this is take me down.

 

[floweravalanche]

I have a doctors appointment today with my main doc, she is finally back I don't have to see her back up and what not, now hoping she can be some more help.

 

[KristenCaNaDiAn]

I hope she can give you some help

 

[floweravalanche]

Thank yas! Kristen

I just got back, and I do have lupus , but luckily she said it's not a serve case, but it's still a concern. She sent in a referral to a specialist that deals with lupus, but said it may be a couple of months before I get in, but I can see her anytime I have any problems.

Sucks that I have lupus, but I'm keeping very positive, like I told my doc, I'm not letting this take me down, there maybe days will be rough, but I'm thinking positive with it.

 

[last unicorn]

Oh no

I don't know much about this disease, but staying positive is a good thing and it will get you through. Good to hear it's not a severe case. I wish you all the best. You can always come here if times get tough, you know.

 

[floweravalanche]

Thanks LU.

From what I know of Lupus it's a Chronic autoimmune disease. There are different types of it, and it's hard to tell which one because they all are so similar.

 

[floweravalanche]

Today has been hell I have had the worst flares ups ever! In so much pain! This sucks majorly

 

[last unicorn]

Get better soon

 

[floweravalanche]

Thank you so much LU!

I talked to someone at work today and they said that I could get some special thing at work to where if my illness effects me from going to work, I can still take days off, etc without being penalized for it, and get help through them as well as have my schedule to where whatever job I am doing doesn't effect my illness.

I talked to my Dad about this tonight when I got home from work, he doesn't think I can get that " specialty" for work, only because I really don't have a lot to back up that I have lupus, even though the blood test said I do, I have all the signs etc and my doc said I do have it and I have a referral to see a specialist. But the problem with lupus it's a very hard and complex disease to really put a complete answer to like, what happens,what can be done etc. In fact it says on the lupus foundation site that there is no cure, and it can be years and year until any one understands. it sucks. but at lest I know I got that option at work.

I just know I've been pretty down, keeping to myself most of the time trying to cope with all that has been going on. I hate when someone ask " how are feeling" or "how are you doing?" and I go I'm alright, fine, etc. When in reality I am not. Physically or emotionally.

I hope I get to see the specialist that deals with this stuff soon. I know my doc said it could be a couple of months, I'm really hoping not, so I can get a better understanding of this lupus, my treatment, etc.

*ugh* sorry didn't mean to let all that out.

 

[last unicorn]

I understand, don't apologize. You're going through a lot of stress and your dad's behaviour really doesn't help.

First I hope you can indeed arrange something for your work. You should really have the possibility to work less without having to fear for your job. Your health is the most important thing right now and if you don't step back,it will lead to a total breakdown eventually.

Then I'd suggest really getting a specialist, someone who has much experience with this disease so you can get the best treatment that's possible. Try to search on the internet, there are forums for anything and everything, and ask other people who are affected, get in contact. It's also a good way to talk about experience and to ask for advice, docs, meds and so on. Maybe you can even find a support group in your area where you can get together and talk about your experience.

It's important that you take good care of yourself and focus on your needs and on the things that are right and good for you instead of bothering so much what others might say or think.

If it helps, you could also go and see a psychotherapist or try to get some meds that help you relax and deal with your fears.

How's the disease treated anyway? Do you get meds? Regular controls?

I keep you in my thoughts and prayer

 

[floweravalanche]

Disease is treated in many ways from meds, to surgery, etc it really depends on how bad of a case you have, what kind of you have etc. It's a very complex disease.

I have joined a couple groups online so I have people to talk to and get a better understanding.

I have a referral to see a rheumatologist who deals with lupus, and diseases similar to it. But it may be until after the new year until I see anyone.

 

[floweravalanche]

Got a call today from the doctors office, I have to go in for some blood work for the rheumatologist, hopefully this means I'll be seeing the rheumatologist soon.

 

[Purplereign]

^ hey there gorgeous . . . wow, you really have had a rough ole time of it. I'm so glad you finally got a diagnosis and can now set about finding a mix of treatments that will help you get back on top of things

a dear dear friend of mine has lupus (I think she got her diagnosis around 14 years ago) and she hasn't let it stop her from living a huge life . . . married, kids, works and is the glue that holds me together a lot of the time!

thoughts and prayers and hugs and smiles are with you

take care of yourself

x

 

[floweravalanche]

Thank you PR!

 

[last unicorn]

Just checking in to see how you're dowing. Hope you had a great Christmas after all and I wish you the best for the new year, especially health-wise. I hope you will be better soon and that the doctors find a good treatment for you. Just keep your head up

 

[floweravalanche]

I'm hanging in there thank you! I see the rheumatologist on the 27th so in 3 weeks, wish is good so hopefully they can put some more answers to this and start the right treatment and so on.

I had a wonderful Christmas thank you for asking, one of the best yet. Thank you for the good well wishes and checking up on me, really means alot.

 

[floweravalanche]

Update.

I see the Rheumatologist for the first time in the morning, I'm up, a bit nervous, mind is wondering everywhere, even though things will probably be alright, I just can't help, but be a bit nervous. Hopefully I can get the bed soon and sleep a little bit, but mind is everywhere.

They'll probably go over the blood work I got done a couple weeks ago, give me hopefully a complete answer to things, and a way to some treatment and so on.

I've been sick since New Years eve off and on, I catch one thing, than another, so I'm a bit tired and worn out, on top of I have to have oral surgery on Feb second. Kind of want a break a bit and hoopefully being sick doesn't effect anything for this appointment.

Hopefully the Rheumatologist will put some ease with this lupus, and so on.

I have been talking to some people that have it on an online group I found, they all are very encouraging and helpful, and have given me tips and so on.

 

[joerags]

Hoping for the best for you.