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ritzbit
07-11-2011, 07:41 PM
I feel like I havent said much on here lately even though I get on all the time. I've kind of been feeling like crap for several reasons but I just really need to complain about my Raynauds. It has always been one of my worst problems and recently is no different. I HATE AIR CONDITIONING. Summer is almost worse for me than winter, because my house is cold and outside is too humid to ever get any relief. Im dressed like an eskimo all day and then have to change whenever I leave the house. I go through more clothes than ever because of it. When my Raynauds acts up bad like this I take showers that are so hot that they burn everywhere on my body that isn't effected. I also notice my swelling gets worse when its acting up. I guess I just feel like its getting old and I keep doing everything I can for it but its not getting better. I can't get it 100% or even 90% under control. I guess maybe thats asking too much. I just dont want to get more ulcers they are so painful and take forever to get rid of and the way they are acting makes me feel like I should be anticipating them making an appearance again soon.

steve.b
07-11-2011, 08:21 PM
iam sorry you are goingthrough this.

thinking of you

Peridot20_Gem
07-12-2011, 03:36 AM
Hi Ritz,

We're in the same boat mate but try and wash in abit cooler water i've had to but windows are shut because if it's to hot i scratch like mad afterwards and you think your home is cold, where it's most likely is'nt it's just that moving from outside into a place cooler makes it feel freezing and i've stated before changing of clothes is madness.
Ritz i see my dermo again next month i think and while i'm there besides the info on buying stuff to keep we warm, i'll ask him what meds etc can be used to help the condition more.

I really feel for you mate being in the same position and i'm dreading the winter because it dow matter what temps the radiators are put at, no way can i get warm.

((Hugs your way)) Terry xxx

ritzbit
07-12-2011, 05:31 AM
If I dont get some sleep Im going to go crazy. Cant get comfortable or anything. Don't feel good.

Peridot20_Gem
07-12-2011, 08:01 AM
It's a shame when your disturbed with sleep..i'd most likely be like it myself but taking so many meds that drug you up sleep comes easy to me anytime during the day.
Is it the raynauds making you where you can't get comfortable or everything else going on. xxx

ritzbit
07-12-2011, 12:19 PM
Somewhat. I get night sweats sometimes so I'll wake up burning up but my feet feel like ice cubes. There is NEVER a happy medium. And lately I've been getting really hot everywhere but my fingers and toes. And they feel so CLAMY, not even just cold. Sometimes they're blue and other times they are just clamy and feel so cold to me but they aren't changing colors and everyone says they just feel weird to them. They are constantly sweaty even though they are cold.....why can't my body ever make any sense? lol

magistramarla
07-12-2011, 12:52 PM
Ritz,
I know exactly what you are talking about! We went on a trip recently, and stayed in Reno, where it is very hot and dry. My Raynaud's acted up and my skin felt awful.
The hotel hot tub felt wonderful, but when I got out, my toes turned so blue that Jeff said that my feet looked like they belonged on a corpse.
I was so very, very happy to get back to the coast! The temps here are the same year 'round - rarely below 50 and rarely over 70. The humidity is perfect. My toes are still cold when I go to bed at night, and I start out the night in my fuzzy socks, but I feel so much better here than any other place I've ever been. (except Hawaii, but it's much like here.)
Hugs,
Marla

ritzbit
07-12-2011, 12:59 PM
So what you're saying is I need to tell everyone that I need to move to Hawaii right? ;) lol I always get that =( when it first started happening when I was a freshman my friends said I had dead hands but that was back when they would just be drained all the time. Always looked like a there was no blood in them at all. Now they just never get any oxygen and are blood as can be. It gets weird looks when people notice when Im out. Mine look like that all the time =( sometimes I dont even notice because sometimes it happens and I dont even realize Im cold! Is that weird? I just dont want any more ulcers =( the last one was really bad my rheumy was talking like she didnt know if they would be able to let me keep it!

Peridot20_Gem
07-12-2011, 01:08 PM
Ritz,

I don't know if you know this but Raynauds is hyperthermia, we burn up inside and instead of our body holding the heat it's just being released, that's why our socks get damp and feel wet in no time even lying in bed but like i said i'm asking my dermo for more info to help us and many more incase there is meds we can take and he's not mentioned it because his main concern is my skin at the moment.

magistramarla
07-12-2011, 01:09 PM
Ritz,
Get that great education, and then you can choose where you want to live. Rob and I both live on a coastline, and we both seem to agree that we have found the ideal climate for our AI diseases. Do some traveling when you can, and figure out what is ideal for you.
Hugs,
Marla

ritzbit
07-12-2011, 01:30 PM
I'd love to live near a beach but now it seems to sunny when I've gone in the past year and just makes me feel sick. I dont know why but I always wanted to live in Georgia. I have lists of places I would like to travel one day, some of them like Alaska may need to go though lol I dont think I could stand that even with good planning.

magistramarla
07-12-2011, 01:39 PM
But here's the thing - not all beaches are sunny! Here in Northern California, we have many days like today - fog in the morning, and mild sun in the afternoon.
Right now, it's 59 outside. I NEVER have problems being outside here.

ritzbit
07-12-2011, 01:46 PM
OH MY GOSH. I assume all beaches are sunny and hot. That sounds like absolute heaven. Oh the thought of being able to be outside for more than a little while without either freezing or dying of heat lol There are only a few months around here that are that nice when I can go outside. If it was between 60-70 all the time my life would be perfect lol our heat index yesterday was 113! I dont think people think of ridiculous heat when they think of Kentucky lol Its been unbearably hot with a smog alert and heat emergency so I have been stuck inside to suffer with the air conditioner =(


I just became a growing lion when I posted this! RAWWRR lol

magistramarla
07-12-2011, 02:04 PM
You need to come visit me, my dear.

Elo
07-12-2011, 02:20 PM
Have you thought about getting foot warmer socks?
They have these socks that are either battery powered, or you can stick special heating pads in - some of which that last for like 6 hours. I don't know much (okay, really anything), about Raynauds, but maybe that would help?

ritzbit
07-12-2011, 02:32 PM
I have alot of warm socks and such but with it being summer its hard to keep them on because if I leave the house and then they are dirty at least in my mind so its just pointless to try to leave on =/ I have a paraffin wax machine that I need to get more wax for. And Marla I agree =)

Peridot20_Gem
07-12-2011, 03:37 PM
Ritz,

When it gets to bad for me mate, the bed is supplied with hotwater bottles as soft as it sounds and i can't tell you the amount of fleece pyjamas and tops that go on besides a 15 tog duvet...it's pure madness when you come to think through one condition alone.

ritzbit
07-13-2011, 03:49 AM
Well here I am up at the crack of dawn again cold and sore with sick stomach. AHHH I feel like I am literally going crazy, like my brain is functioning even worse than usual and its ridiculous. If it werent for the fact I've barely been sleeping I would really be a little worried about some of the tricks my mind has been playing on me. I have been waking up at 5 against my will everyday and I dont even feel bad other than being sore and aggravated for being up so early with so little sleep. Then around 6 out of NOWHERE my stomach is like oh my god run! and I have to hurry to the bathroom. Terrible. All the joints in my hands and feet hurt pretty bad and Im sure not sleeping isnt helping them get better. AND because I was so drained yesterday I fell asleep and guess who forgot to take her nitro patch off? ME. So now I cant wear it today because its supposed to be 12 hrs on and 12 off. So now my Raynauds is going to be even worse today =(

Peridot20_Gem
07-13-2011, 12:01 PM
Ritz,

I do feel sorry for you mate your going through hell and back and early morning rises wow help then the loo...it's a wonder your not completley drained out mate. xxxx

ritzbit
07-13-2011, 05:46 PM
WARNING: Gross info will follow.


So I have been having tummy issues for awhile now and the past few days have just been BAD. I have been waking up at 5 running to the bathroom at 6 and having (TMI Im sorry) horrible bright green uh bowel and its been happening all day. Its terrible diarrhea....it hurts =( I dont know why it keeps happening its been happening more frequently.

tgal
07-13-2011, 06:32 PM
WARNING: Gross info will follow.


So I have been having tummy issues for awhile now and the past few days have just been BAD. I have been waking up at 5 running to the bathroom at 6 and having (TMI Im sorry) horrible bright green uh bowel and its been happening all day. Its terrible diarrhea....it hurts =( I dont know why it keeps happening its been happening more frequently.

Not a TMI- I have had stomach issues for years. I was finally diagnosed with IBS and one of my questions to the doctor was why am I have green diarrhea?? I will pass on what he said to me. "If it only happens once or twice it could be from eating leafy green veggies but if it happens often (like with me) it is a sign that your food is moving too quickly through the large intestine and the bile didn't have time to break down the food".

Hope that helps!

ritzbit
07-13-2011, 07:07 PM
I havent hardly eaten ANYTHING because everytime I do my stomach hurts. I feel fine when I dont have anything in my system. Like all I ate today was a poptart for breakfast and then on of those microwave mac and cheese things and half a hoogie for dinner. Yesterday I probably ate even less yesterday because I dont think I ate lunch or breakfast just a chicken thing for dinner. And on top of my tummy being all messed up my feet are starting to get all messed up again. I dont know if its Raynauds related or not. I dont know how Im irritating anything when Im hardly eating. =/

tgal
07-13-2011, 08:13 PM
I havent hardly eaten ANYTHING because everytime I do my stomach hurts. I feel fine when I dont have anything in my system. Like all I ate today was a poptart for breakfast and then on of those microwave mac and cheese things and half a hoogie for dinner. Yesterday I probably ate even less yesterday because I dont think I ate lunch or breakfast just a chicken thing for dinner. And on top of my tummy being all messed up my feet are starting to get all messed up again. I dont know if its Raynauds related or not. I dont know how Im irritating anything when Im hardly eating. =/

I am not going to pretend to diagnose you but you might want to add that to the list of things that you want to talk to the doctor about. IBS and other stomach issues are common with Lupuss

steve.b
07-13-2011, 08:52 PM
i too have bowel problems.
there is 2 basic types of bacteria.
good bacteria and bad bacteria.

if you use antibiotics..... you kill of all types of bacteria.
you can get bacteria pills (full of good bacteria)

what i need to do...
is to kill of my bacteria at regular intervals.
my ibs is worse if i let too much bacteria build up.

my doctor has prescribed "metrogyl"
i use it to kill of all bacteria,
i then take some good bacteria tablets.
my ibs settles down for a while.
i never really get over ibs... it is little of bad.

i suggest talk to your doctor
see if this is what is happenning with you.

stress also makes ibs worse.
body temperature also makes ibs worse.
the hotter your core is... the worse the ibs.

tgal
07-13-2011, 09:00 PM
Yep.. I take two as well and then I am ok for a little while. When it comes back I go back on the meds. My doctor also has me eating yogart that has proibotics in it. It seems to be helping a bit too

ritzbit
07-14-2011, 09:52 AM
This is going to sound really bad but I have been told by everyone to give the doc a call and see about a GI doc because of all the problems lately but I just DONT WANT TO. I want to push everything under the rug right now because I HAVE to get my college stuff straightened out AND Im getting a car AND Im trying to find a job so I can pay for the car. I just dont want my raynauds and lupus and whatever stomach problems to be flaring up right now because I do not have time for them. I just want to tell them to put on their big girl panties and leave me alone for a little while so I can get my life back on track since they screwed me up in the spring and Im STILL playing catch up. And on top of all that Im stilllll not sleeping =( my mom thinks that part of it is anxiety and thinks I should ask my shrink for some "nerve pills" as she calls them and Im starting to think I should. Any thoughts?

Peridot20_Gem
07-14-2011, 04:44 PM
Hi Ritz,

It could be a bowel problem and i can understand you wanting a break mate with constant episodes going on but do you think any of your meds could be possibly upsetting your stomach besides, it's worth looking into and i bet your mom is worried stiff about you. xxx

steve.b
07-14-2011, 07:41 PM
if it is a simple matter of bacteria.....
it is cleared up in a day or two with medication
your pcp can prescribe for it.

i also suggest taking "nerve pills"
if you are like me.....
my brain does not function properly
i take them not because i am depressed, but because they help my brain work.
read a few of the recent threads about them....

magistramarla
07-15-2011, 07:05 PM
I havent hardly eaten ANYTHING because everytime I do my stomach hurts. I feel fine when I dont have anything in my system. Like all I ate today was a poptart for breakfast and then on of those microwave mac and cheese things and half a hoogie for dinner. Yesterday I probably ate even less yesterday because I dont think I ate lunch or breakfast just a chicken thing for dinner. And on top of my tummy being all messed up my feet are starting to get all messed up again. I dont know if its Raynauds related or not. I dont know how Im irritating anything when Im hardly eating. =/

Ritz,
My daughter has IBS, and it is much, much better when she eats RIGHT, which your diet for the day is NOT.
Try eating a healthier diet. Eat a high fiber cereal and fruit, or yogurt with grape-nuts, or an egg instead of that pop tart.
I didn't see any vegetables or salad in your diet at all. You need to be eating high quality protein and LOTS of fruit and veggies.
Kayla has found that any highly processed food makes her symptoms worse, so she cooks a lot from scratch.
Read up about healthy diets and try a few recipes. Get yourself hooked on good, healthy food.
Hugs,
Marla

ritzbit
07-15-2011, 07:59 PM
I dont think my moms been feeling up to cooking as much. We've been having off the wall stuff that she already has and when she goes to the store she's usually only getting stuff for dinner. Eating healthy is hard when your not the one paying for the food or shopping. Im not saying its her fault either, its her relax week because the 2 oldest of my younger brothers are at their dads for the week so our house has been a little less hectic. And she's been talking me here there and everywhere for car and college related stuff.

ritzbit
07-17-2011, 02:27 PM
Random and I didnt want to start a new thread, but will my face ever go back to normal =/ from the steriods. Its still just so round. Im only on 4 mg now and its WAY better than it was. But I can still see it even though everyone says I look like Im back to how I was.

Before:4122 4124 The one in the blue dress is from just a year ago.

During: 4123

After: 4125

steve.b
07-17-2011, 10:03 PM
it is my belief. that when you stop steroids, the body starts to revert back.

thing that can stop the reversal include.
diet changes and hormonal changes.

it can take months for the body to readjust, and months more to shed the extra mass that has slowely accumulated.

tgal
07-17-2011, 10:25 PM
Even with the rounder face you are very pretty. f I met you on the street I wouldn't take you for a steroid user. I can usually spot them because of the face but I don't see it on you. My face shape was round to begin with so now it is just round and huge. You are a beautiful with or without steroids

steve.b
07-18-2011, 12:54 AM
i agree totally

lovedbyHim
07-18-2011, 02:21 AM
Ritz my face always goes back to normal after I go back down to 5 mg. It is hard to watch the changes from steroids and I hear your discouragement, but it does go back.

Peridot20_Gem
07-18-2011, 06:44 AM
Ritz,

So nice of you to add your pic's mate and thank you.

You'll soon adjust to how you was before the steriod i did ritz but they can adjust your hormones a fraction i think..well that's in my opinion of taking steriods.

Ritz where ever you was going in your blue dress you do look adorable but you carry the face of such an intelligent person but also somebody who very quiet....love the shots and nice to see who we're chatting to.

All my love Terry xxxx

ritzbit
07-18-2011, 09:45 AM
I know it doesnt look terrible, but I know its not MY face. You know what I mean? I am just a really small little person. 5'4 barely and Im just usually really thin. No one ever likes to hear thin people complain about their weight and yell at me when I say anything. But my body isn't the one I knew like 6 months ago. My face is all round and I gained like 10-15 lbs that wont go away. Everyone says they cant see it but I can because I see the difference all the time. I just thought it'd start to go away more since I've been on only 4mg of medrol for about a month. And thanks =) The pic in the blue dress was at my aunts wedding last summer. I felt so pretty. I want to get back to that. And get another spray tan that looked that good lol I hate being pasty white I want a little color lol

Peridot20_Gem
07-18-2011, 10:16 AM
I've just looked at your pic's again refering your face...from the shot in the blue dress it's made your face just abit round by your jaw line either side of your mouth that's the only difference but the pic now you've added your necks thin and around the top you look like the first picture.
Is the 10-15lbs mainly on your body and i don't know if the steriod as affected you in this way but my chest when massive also.

As long as your still on a steriod it don't matter what mg and if your a woman where it does affect your hormones to adding weight, you won't see all the weight loss go until your completley off it and just that 4mg could still be holding it ritz.

You actually look stunning in that pic and try and bare with it because i do know how you feel because when i was 18 i was 5ft 10" and only 7 & half stone in weight and within 3yrs i went to 18st and a size 24 everytime i looked in the mirror all i saw was someone blowed out plus it's left me with the stretch marks to prove it but they pulled me off the steriod as it was doing more harm than good to me and i asked the doctor how long it would take to loose it all and he said 3yrs the same amount of time...ritz i ah joking mate within 6mths i was down to 9st but still very busty but being tall it all suited me.

ritzbit
07-18-2011, 11:10 AM
I feel like the entire shape of my face is different. It looks round and square-ish to me now. I have big cheeks and my neck feel thick. The skin on my face used to feel almost tight and now I feel like its flabby. I was already really self conscious and could deal with the weight gain and my face when I was on the high doses because I knew to expect that but its getting to me now because I thought it'd start to get better. =/

Peridot20_Gem
07-18-2011, 05:34 PM
Ritz with pic's people can only view them but it's yourself who see's the proper image and because your just at 4mg you'd have thought the rest would have come off by now...have you spoken to your rheumo or GP to see if that 4mg can still hold that weight because it's worth asking and if they say yes then you do know what the problem is but like i said i have been there and it's not a nice feeling.

I'll add a pic of me tomorrow at 11st stone just before we moved property's and i was diagnosed with Raynauds.

Peridot20_Gem
07-19-2011, 03:05 AM
Ritz i'm adding two pic's mate one at 11st where i hated myself and another at 10st...your not alone Ritz even though your not tall.

Myself at 11st

http://i54.tinypic.com/2ypl0nn.jpg

Myself at 10st

http://i51.tinypic.com/sx2aua.jpg

Elo
07-25-2011, 04:00 PM
Do you think these might help? I just stumbled across them while looking for a birthday present for someone:
http://www.vat19.com/dvds/heated-slippers-dreamtime-foot-cozys.cfm

magistramarla
07-25-2011, 04:22 PM
Terry and Ritz,
OK girls, you are BOTH beautiful!!
We girls just have to learn to have better self-images. What we look like on the outside is NOT important. Being as healthy as we can be, educating ourselves and being kind and loving toward others is much, much more important. If you do those things, you are going to look lovely to anyone who gets to know you, and anyone else can take a flying leap!

I know that this is especially hard for you, Ritz, since you are so young. I gave this same speech to many of my students. I knew some seriously obese students and some LGBT kids who had a lot of problems with body self-image. The thing was that these were some of the sweetest, most beautiful kiddos that I knew. I really love the campaign that is going on right now called "It gets better!" It's mostly aimed at LGBT youth, but it is so true for all young people - as we get older, and come to accept ourselves for who we are, our lives do get better!

Hang in there, take the meds that will get you better, and frak the side effects.
Hugs to both of you,
Marla

Peridot20_Gem
07-25-2011, 04:48 PM
Marla,

Your right in what you say and i added those pic's to show ritz she's not the only one who's carried weight...just glad i've not got the ones when i was 18st but i'm 9st now buti've told ritz to give it time and she'll get eventually down.

Mind you marla meds can knock your neck in sometimes with the side affects alone.

Hugs your way Terry xxx