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Discussion Starter · #1 ·
Before I start my rant I just want to say that I am by no means a vain person but a girl likes to look good at times...right?

I'm really not looking for any advice here, I just need to get this off my ever sagging chest and would like to know if anyone else can relate. Some may or may not be lupus related.........

I'll start from the top:

Hair - It's rapidly thinning and much greyer than normal. I can't do a darn thing with it and most times look like a sheepdog caught in the rain. Could be lupus related or just 10 years living with my darling hubby :hehe:

Memory - what memory? :ermm:

Eyes - used to be my best feature but now resemble the latest road map and look like I've been out on the town everynight. At least I'm getting a good reputation eh? :lol: They are also dry and scratchy - it seems the lupus has got to them too. My lovely eyelashes are reducing by the week - maybe I need to use feed, seed and weed like my lawn!

Nose - dry, sore and itchy.

Cheeks - thankfully the rash has subsided but my latest rheumy almost didn't believe I had lupus because he couldn't see it! :rotfl:

Mouth - what can I say, it's a war zone. Tongue resembles the surface of the moon, gums are inflammed and ulcers everywhere else. Could be lupus or plaquinel apparently.

Glands - well they are up more times than my numbers on the lottery.

Hands - they like to feel cold all the time and will withdraw feeling at anytime without my consent. I get small blisters on the tips and alot of dryness.

Nails - I used to have beautiful nails but they've now stopped growing and are brittle. Saves me the job of cutting them I suppose.

Abdomen - IBS is playing up a treat! I could appear at the Royal Albert hall to do a Trumpet Voluntary :lol:

Financial Department - well you have to pay to use it. :rotfl: Best not even go there as you never know what will happen down there. Keeps me guessing though!

Derrier - painful and the size of a small country due to lack of exercise. Shortly to be announced as another continent.

Muscles - they really really hate me at the moment. I didn't know I had any but they've talked my rheumy into banning me from the gym until further notice. Grrr!

Joints - they have rallied and are doing well, I think they may still love me.

Feet - they have now joined my hands in the cold war. :(

There are several other areas that are not quite on the same latitute or longitude as they used to be and have now gone south of the equator - I'm putting that down to global warming.

Lots'a'luv, :love:

Pam xxx
 

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Oh my goodness Pam it sounds like you are going through a major flare(((((((hugs)))))).I sure can relate to most of what you are talking about anyway at one time or another.I am doing somewhat better now if you call only having IBS trouble.Is there anything your rhueme can do for all the pain you are in at least?i had some trouble with an awful lot of wieght gain and loss of wieght also in the last 9 months and i do no what it is like to sag :lol: I had the eyes looking like scarecrows actually also and the Darrier is looking like a state for sure :rotfl: I have the oppisite with my wolf like look on myface where i never had it before except on occasion but now have it most of the time for sure.I guess i just wanted to let you know i do understand what you are going through and i hope some things will get better real soon((((hugs)))).My thyroid has caused an awful lot of havic for me but not sure if that could be whats going on with you.I have an awful lot of brain loss from it and migraines and fatigue like real bad to the point of my legs feeling like they have cement on them they were so heavy.Well anyway it would take long time and lots of typing to go into everything.I just really hope you get some relief real soon.((((((9hugs)))))))

Tammy

Tammy:)
 

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I think the humor of your post will go a long ways to getting past it all :)

I can empathize with just about everything on your list as well, my eyes have gotten such large red areas that I about got kicked out of my daughter's daycare because they thought I had pinkeye (& while I did get that a lot for a spell - the other times it was dryness or scleritis).

May I add prednisone pimples to your list? :eek:

Hope some of these ease up for you... and also hope you feel better for getting it all off your chest!

Take care...
 

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Oh my, Pam, I think you're looking at a picture of me!

But I do have one identifying characteristic for the past few months .... I wake up each morning with my nose bright, bright red. Lasts for a couple hours. Think Rudolph the Rednosed Reindeer. I don't know why it's happening, but I tell you it's ugly as sin. And yes, people do notice it.

Seriously, I hope you get some relief soon. Sounds like you need some comfort in life.

Hugs,
Sunny
 

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Oh Pam,:hug:
You are so pretty and I know it because I have seen pictures:)
I do relate to the lower of our self esteem due to this disease.
I will add to the list:

I look like the Hunch Back of Southern California thanks to my prednisone hump on my neck.

I was also mistakened for Santa Claus due to my lovely belly full of jelly and those rosy cheeks.

I look like I have been beaten, because every scratch and bruise takes FOREVER to heal.

I really look sexy toting along my walker-it takes all my hubby's willpower not to throw me on the floor right then and there:lol: .

I am sooooooo white that I blind people.

My sweet tooth has turned into sweet teeth. I think I eat enough sugar to supply a country with it. I know I need to grip on this.

I could use the flab on my arms to fly.

However, I have to remember that people loves us for us and not what we look like or what we have wrong with us(Thank God!!!)


We will make it through this together.:wink2:


Thank you for a nice chuckle.:rotfl:


Love.
Becca:love:
 

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Hi Pam

You have my sympathy.

What ever I thought about my body in the past, I was always happy with my eyes and lashes. Now my right lashes are half the length of my left. And they have lightened so they look stumpy anyway. My eyes are surrounded by 'laughter lines' - funny I don't think, and the bags underneath actually wobble some days.

I have lumps under the skin on my face rather than spots, and the thread veins have crept up from my neck and chest to colonise my jaw line. My neck and chest now have the same lumps as my face.

My hands look 95 - dry, cracked red and wrinkly. People kindly comment on my hands, which I greatly appreciate.

My back, hips, knees, elbows, wrists, fingers and heels are nagging like little good uns, I've still got pins and needles down my right arm, and I'm fed up.

I had all my hair cut off last week because it has changed in texture, colour, and density. Not for the better. I think I look dull as dishwater - I liked having long hair.

Whilst it is not really a problem on the health front, the livedo reticularis that used to keep to my knees and inner thighs has now crept over my abdomen right up to my chamoise leathers (used to have a pair of breasts there somewhere)

You made me smile.

Take care.

Thanks for the opportunity for a communal vanity moan.
 

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(((((Pam)))))

I truly empathise,I feel the same way too :sad:

Thanks for putting it in such a humorous way that it gave me a little chuckle :)

regarding the greying hair......my hairdresser has also commented on how grey mine has gone :eek:I had to add some more highlights!
I wonder if the plaquenil is the culprit??

if it lightens your eyelashes then it's quite possible it can cause grey hair?
well that's my theory anyway :lol:


ladies thankfully our true beauty is inside!! :) & we stil have our sense of humour!

take care pam :hug: karen x
 

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(((((Pam)))),
I understand so much of what you posted on a personal level:eek:, add to it my prednisone buffalo hump, & white eyelashes, and I won't even have to buy a Halloween costume this year:hehe:
Seriously about a month ago, I got totally fed up with my long hair, it had turned really coarse and sort of lightened, was getting an orangish red cast to it, normally it is medium brown with natural gold/red highlights. I had tried every conditioner known to man, nothing worked, so then I got the bright idea to color it back to it's natural shade. I saw an advertisement on tv about a new home hair color kit that promised "no brassiness or orange tones". Feeling that this was the solution to my problem, I bought it, followed the instructions and Ta Da>>>>>>> It turned all of the lightened orangish spots purple:eek: Yes, PURPLE! I tried to wash it out some, nothing worked:worried:, I hid in my house all week, debating whether to go Goth/Punk chick in order to keep my beloved strands.......but sanity won out and I had it all cut off, very short. By the time the beautician was done, all of the hair on the floor made it look like someone had killed Barney:lol: .
 

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Pam,

You lighthearted humor will help you through this flare..and shows your true beauty :)

Hope you are feeling, and looking back to your old self soon!!

Sharon

 

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Thanks for both the laugh and the companionship in symptoms! :) I've not wanted to complain about the one thing that is bugging me because I know it could be so much worse but... after years of having nothing wrong with my scalp except thining fine hair, in the past 3 months I've been getting sore spots on my scalp - not that I can see them or anything. Last night the spot was so sore I couldn't believe it, but I think it "popped" when I touched it - NOT with my finger nail, I do rub lightlight with the tip of my finger to see what they feel like but I don't try to scratch or anything. I felt wetish after I touched it. Yuck! But thanks to other people here, I'm not worrying about it, just putting up with it.
 

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Pam,

Your humor will keep you going and keep you from going down into the pit of self pity. I know that humor as been good to me these past 5 years and the early years with this disease.

Right before I came out of remission I was in a period of beautiful fingernails, forget my toenails they have been a mess since I was a teenager, I had people asking me what salon I used. I used the salon of Karen with healthy foods and lots of water. However the salon of lupus overlap scleroderma prefers to keep them brittle, with divots and striations and so thick they cause ingrown nails that they allow to get infected.

My eyes I used to brag about. I use to say that my eyes were the only healthy thing on my body. 2 years ago I had to start wearing glasses and I was informed that my eyes are on the dry side.

The dry nose is the pits don't you get tired of the blood clots?

So yes we have many areas that are the same the right now. I could go on with some of the other areas you discussed.

One of my sayings is to look for a rainbow everyday no matter what. There is always something beautiful to be found and the time spent looking is not spent focusing on our crummy bodies.

Take care,
Karen
 

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Hi,

I understand, your upset with all the bothersome effects of our disease and, effects the meds have on us..but you did make me laugh!

Thank you, for that! :lol:

Love,
Sandy
 

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Oh ((( Pam )))

I divorced my body a few years back as unfit for purpose. That was about the same time I decided that thinking too much was as dangerous as regular exercise.

Many hugs
Clare
 

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Clare-I think that is the best advcie I have heard. I am divorcing my body!!!!!!!


I did not know plaq. lightened eyelashes-how about eyebrows? Mine are blonde and hardly there.


Humor is the best medicine!!!!!:lol:

Thanks Pam:hugbetter: My sweet beautiful friend.


Love,
Becca who is now a divorcee:rotfl:
 

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Pam, ((( aww)) but you did make me laugh, kidda feel the same way, got sheets over all the mirrors, it's soooo depressing :hehe:
Clare... :lol: yep i to am divorcing my body and prob my hubby...:lol: kids will prob divorce me... but could be worse:)
oh yea before i forget... the grey hair thingy ....... my hair has turned in a short period of time , from long shinny healthyish red hair (mine ) to long horse hair texture very died red hair... when i went to the hair dresser last time nearly fell of my chair,when she told me all the roots (all my roots :eek: ) where white !!!!!! (((awww)))) im to young for white hair...:rotfl: so a slave to the hair die i will be forever....if my body has no intention of growing old gracefully neither do i !!! so there.....:hehe:
 

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Dear (((((((Pam)))))))

I can so empathise with your post. You were very brave to go through each and very feature. I prefer to turn a blind eye ;) (or is that a red eye?)

Clare :lol:
I divorced my body a few years back as unfit for purpose
I was thinking of doing the same but citing 'irreconcilable differences' :)

Luv n stuff
Joan:rose:
 

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Discussion Starter · #18 ·
I can't thank you enough for your posts :grouphug2:

It's good to know that there are others that are feeling the same way. It's so hard to tell people everything - even those close to us as they look at you like you've gone mad or you are a hypochondriac. Individually all the problems sound trivial but to me they are not and it's really been getting me down.

Sometimes I wonder if I should be putting the 'happy bubbly Pam' face on or whether I should just moan the face of people. Either way I don't think I'll win. I let my hubby read my post and your replies and he was quite shocked - hopefully that's a good thing.

I met with a friend tonight and could trust her enough to spill it all out and she was so sweet I almost broke down. I don't think there is a right or wrong way to deal with what we have but it's damn hard trying to figure out the best way to keep ourselves sane!

My doc thinks it's just a worsening of symptoms and not a progression of the disease. I sure hope so but I haven't felt well since the beginning of January. I am so looking forward to this specialist clinic on March 31st!

Although there was humour in my post I did regret posting it at all as I hate to appear weak......until I read all your replies. I'm just feeling a bit fragile at the moment :tears:

Thank you all so very very much :foryou: :foryou: :foryou:

Hugz,

Pam xxx
 

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GOOD LUCK with your apppintment on March 31st.

I promise I wil be thinking of you. :love:

Weak? How very dare you! :rolleyes:

Take good care

:love:
 

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Wow, Pam, you've got a lot going on, and I can relate to what you're talking about. What a great post too, I might add, and loved the format. Good way to put it out there!! Hugs to you and I hope you feel better soon. Hugs.

Love -- SusieBB
 
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