[mali-cas]

Hello Friends,

I just need to vent. I am soo tired, and so tired of hurting with every movement. The meds are not helping me, in fact some of them are doing more harm then good. Prednisone for example has turned me diabetic. They have taken me off of it and now I am hurting everywhere. I was taken off of MTX and put on Imuran and I don't see any difference in this drug. The Utlram doesn't seem to be as effective as it used to be, neither does the Lyrica. I really hate going back to the Rheumy on the 12th and shake my head no, I am starting to feel like a nut case. The uticaria and angioedema went away but is back now worse than ever. I feel so ugly and hate going out in public now, I hate all the stares that I get. I hate that I smell like Icy Hot instead of my perfume, I hate that I can't hide my pain from my kids anymore, they notice with every step that I take. I hate that "people know someone who had mild lupus and are now cured, why can't you be cured?" comments. I hate the "maybe you are just depressed, they say that depression hurts" comments ( I am not at all invalidating depression, I feel for those who are going through that). I hate that my family (father) had "read up" on Lupus and tells me that it is "manageable". If it is so manageable, then why in heck can't I manage it? I am so sorry to be such a downer right now, I have just had enough.

 

[Katharine]

Hey Mali and ((((((((((hugs)))))))))))

You really are going through it aren't you, ppor thing!

All I can say to those that keep going on and saying "so and so has it and is fine..." is, well, that is great for so and so!! However, from coming here you know that that is not true for everybody and that unfortunately you seem to be among those whose disease is difficult to control.

I really can't comment or give advice on the meds and just hope that your doc is doing everything possible to find a solution.

I remember I used to think my rheumy would think I was mad (and or a hypochondriac) when I kept going back and saying that nothing was really improving...one day I actually said it to her and she just said straight up "that is one idea you have to totally banish and for good! you are not in any way a hypochondriac!!" She was very firm about it and it really did make me feel so much more at ease telling her what wasn't good.

I'm sorry I can't do more, just send lots of strengthening hugs...
:grouphug2:

Katharine

 

[ALWIN]

Hello Mali :hugs:

You sound just like I feel right now. Especially the feeeling ugly and sick of not being able to manage symptoms. And an up coming appointment with rheumy. Should be good news, but just not in the mood I am afraid.

You have my sympathy and gentle hugs. There's little more I can offer right now. I do hope you start to feel a little bit better very soon. Especially with the pain. Right now i would give my world for adequate pain relief.

It is such a cr*p condition.

I seem to be ok until I loose my sense of humour, and let me tell you I have not seen it around anywhere for a bit. I'm hoping it might be hot footing it in your direction to cheer you up, but if it arrives will you send it back fast, please???

As far as other people are concerned, if they don't understand try really hard to close your ears. Sometimes people are just no help.

Right now i could just take a rubber mallet to anybody even thinking about looking at me.

Sorry if i've made you feel worse Mali - intended to help you feel you are not alone.

Take good care.

 

[Katharine]

Hi Alwin,

I'd been wondering where you'd got to lately. So sorry to hear that things are that bad for you too. Some extra hugs to help you too then.

:grouphug2:
Katharine

 

[ALWIN]

Thank you so much Katherine.

Very happy to see things are looking quite good for you right now. Really enjoy your trip and let us know all about it.

I am just about to disappear into my bedroom so teenagers can have their Halloweeen party in peace. So looking forward to my bed!

 

[ALWIN]

mali-cas ....

you could always join me ... not literally, but feet up in bed ... hopefully with bottle of Baileys if anybody has remembered how to keep me upstairs. Hope there is something on the box worth watching.

Will be thinking of you chuck.

 

[butterfly24]

I just wanted to say you're in my thoughts and prayers. I cried reading your email.

I have no advice to offer, but just had to say you're on my heart.

 

[Douglas]

I am so sorry to hear of your pain and the emotional agony that is autoimmune disease. While not nearly in your class for misery, I have had enough small tastes of it to be able to say that I empathize completely. As our Philospher on the site is wont to say, "Lupus sucks!" and indeed it does.
I pray that you find release and a calmer mind.
Douglas+

 

[Joandublin]

Dear Mali :hugbetter:

Im sorry you are so miserable right now but very glad you have a place to come to where others understand. Lord save me from those that would advise that your disease is easily manageable because 'so and so down the street had Lupus and they are fine', etc etc.

Sometimes people mean well and dont realise how hurtful and damaging their comments are. Please dont worry about your Rheumy appointment. Tell them exactly how you are feeling and how fed up you are. Ask for his/her help in finding something that might ease your symptoms. I can understand how miserable you must be feeling if you were taken off the prednisone. Is there an NSAID that you could try for example which would help replace the prednisone?

Whatever you do, dont hide how miserable you feel from your doctor. You owe it to yourself to be up front and honest about this - otherwise nothing will change for you over the coming months. Please let us know how you are Mali over the next few days.

Its okay to feel fed up and miserable - just make sure it doesnt go on for too long without getting some help. Its easy enough to move from feeling down to feeling depressed and never be afraid to face this possibility if it arises.

Much love to you
Joan:rose:

 

[LolaLola]

Dear Mali Cas, felt like you some years ago before my symptoms finally came a bit under control. People can be so hurtful, don't you love the ones who give you newspaper cuttings about how someone "cured theirselves" without meds.
I remember Prof. Hughes answering that one well when he said that many patients do not have the luxury of being able to do without meds.

On another MB I visit we once had a thread for what we hate most about this disease. I will tell you some of mine, hate carrying a large bag of medications if I travel anywhere away from home.
Hate not being able to hold up a book or mag because of arm pain.
Hate the times when I get unpredictably ill and let people down.
I also would like to smell of perfume rather than Tiger Balm etc.
You will find you will accept things more easily in time.
Oh and I hate that I can't bend over or kneel down without falling.
Enough about me. It is you who needs to vent!
x Lola

 

[mali-cas]

Thank you all for your kind words and prayers. I am feeling emotionally better today. I took a sleeping pill last night and was able to get a decent nights sleep for the first time in a long time. It is giving me a better perspective. I decided to just try and take it easy today and read a good book.

Thank you again for the kind words... I love and pray for each and every one of you.

 

[MichelleAnn]

Your email describes me at this time too. I dont know where to begin. Im so tired of hurting, my body, the weight issues, the medicines, all the other lupus problems I have, I myself cant handle them, understand and live with them, how can I expect another to help me or understand. it never ends. im tired, too tired to keep fighting. im sorry. I skipped my last 2 appoinytments as I just could not move out of bed. im mad I did it, but I couldnt move. Lupus has stole my life, identity, my childrens lives, my self respect, everything. Now I live poor, no job, unable to do most things, I live off the state, which is barely ebough money for food, and utilities. Ive lost everything. My mom, family, my home, my marriage, lupus robbed me of everything. I dont see an ending to this.....it all hurts.

 

[maybelle]

Hello Mali - I so hope you are feeling lighter now. Sometimes knowing how many people are sharing or acknowledging your burden can help you through the darker days. I myself have a husband and one friend who believe me (or should that be believe in me???) enough to see me through the bad days. Many people sympathise, but few know how to handle this condition... Sometimes even my "best" friends or loved ones can say the wrong thing. I accept it because I know they really are trying to help... theyre not being angry at me, they are angry for me. Just sending hugs. You are lucky (in a perverse kinda way) that, through this site, you have so many people who can say
"I understand" and you know that they really, really do mean it... Take care.
MichelleAnn... Ditto for you too... Your profile pic is of a young, smiling, beautiful girl, I am presuming that is you... never forget that... I am now 46 (OMG) larger than I have ever been (tho' still a size 12) and I look about 10 years older than I am... Doesnt mean I cant still look good if I really, really want to, it just takes a bit more effort than I may like... It can be so difficult, but even on your worst day, someone may say something or do something to make you smile, or make you glad youre alive and they are in your life, please hold on to that... Your pic reminds me of me (the real me, that is). Hope I make sense, I am not prone to leaving messages usually (I prefer to cope by reading how others do - So thanks to you all for getting me through the last couple of years or so)... Luv n Hugs, M