[jane1]

I know there are people worse than me...but i dont know what to do any more..:sad:...i am being moved from gp to lupie clinic.to gp ect....bloods ect ..as usually done...but because i havent had a high ana test latley they are only 98% its lupus....and i know they are doing the "eliminating thing" as its not this..or that...but in the past 6 weeks im so tired and i cant be bothered to do dinner....if i do...i dont fancy it at all........even if someone else cooks..i cant be bothered to do anything....i do work ..4 hours for 4 mornings a week...its admin work so hardly hard?!!
I look tired and worn out..and i feel it too.....i asked gp to give me something as i was getting agitated...he said "well you always seem ok when you come in here?!!!" so if i went in to see him crying and having a break down that would mean he would take notice then?...i know its hard for hubby too....but im not me anymore! gp has given me diaezapan....i am on anti deppressants and have been for 3 years now......but i havent ever felt this bad...
My joints hurt...my fingers swell up ...all of them...iv got a headache thats always there?!!! well at the moment.......my eye sight has got really bad...im sooo tired...iv had a rashy face and its annoying, its red then goes dry and scaley...no matter what i put on it....im starting to think other people think its all in my head?!!......................

Sorry for the moan...i cant always moan at hubby he worries enough as it is..:lol:....thanks for the moan...jane

 

[mumoffive]

sending you empathetic hugs Jane.
I dont believe there is any value in feeling guilty for feling bad purely because you are not as il or got as much on your plate or in some other way may not be as bad as someone else. The fact that someone else has worse problems do not make your any the less real or devastating or hard to bear.
yes it is true you can always find someone worse off than you...but there are plenty of reasons for you to feel low all the same.

Do you have a good friend who you can offload on? Someone to si and have a coffee with maybe? I felt really and truly loved the other week when a friend from Church offered to take me shopping. It was purely to do the weekly grocery shopping and we had a coffee and cake aferwards but it was an act of love from somone who saw a need she could fill. We had a good natter about anyhing and everything, a bit of a giggle at my expense as I lost balance a few times was beaten by a carton of milk that was to heavy to lift..instead of feeling embarrassed and awkward I was able to laugh at myself with someone who cared!
Another friend from Church has literally just left...having heard rosie's carer was haveing time off this week she has been round to help with our evening. Friends who care and who accept me as i am do more to help me feel better than any number of my prescription drugs...of course I know I ned those too.

Sending you much love and a listening ear!

 

[helloos]

I am glad that you came on here to vent. Sometimes it does help to know others know exactly what you are talking about.

I know it is frustrating right now for you - in this waiting period - and the not knowing what is going on as well, but you still need to take care of you. Getting the rest is the best thing for you.

If they are 98% sure can't they start with some sort of treatment?

I know that them saying you look good when you come here ! Oh boy, that one really gets to me. I always wear makeup, jewelry, etc. and even in my sickest days I do, so you can never ever tell how someone feels by looking at them. From what I read, most people with Lupus always look better than how they actually feel.

I know your hubby is worried about you, but I am sure he also wants to know what is going on and how you feel. My hubby always knows something is wrong. Even when I try my hardest and say I am not going to burden him with this one, etc. he always can read my face. It bothers him more if I keep it in.

Do they at least have a plan for you ?

At any rate, I understand how frustrated you are and how you aren't feeling yourself. It is an emotional roller coaster. Try to hang in there, take each day as it comes, get some rest and pamper yourself. You are worth it.

 

[confused1]

(((((((( Jane )))))))) I'm so glad you came here to vent and look for support. It's too hard to keep all the "icky stuff" inside. Sometimes I think we put on our best face to go to the dr. and then they do see us as being fine. It's got to do with being taught all our lives to look good for others and put on a brave face. Maybe your dr. needs to see you as your truly feel. It might give him a better picture of what you face.

Keep pushing for relief. It may take more tries at medication before you find a combination that works, but somewhere out there is at least a bit of relief. And for those times when no relief is possible, just come here and yell your head off. It helps to know that there are many strong shoulders waiting for you.

Hugs and good thoughts,
Sunny

 

[ALWIN]

Hello Jane

I'm sorry you feel this way. I remember it well, and still have odd low points.

I just wanted to let you know I am thinking of you and to send you my Best Wishes.

I really hope things start to improve soon.

 

[LolaLola]

Dear Jane,
Are you feeling any better?
Is there anything we can do.
x Lola

 

[jane1]

Hi........thanks to you all i am feeling a lot better and not so dispondent...i just ran out of energy and the will to do anything.......and i know that its only me that can really jump start me ?!!........thank you for your support and help..its like being in a tunnel with no light at times......as you all know......hopefully things will be going forward with gps and hospital ect.....well i can hope....:lol:........and the sun been shinning today.....jane:wink2:

 

[Leora]

I know there are people worse than me...but i dont know what to do any more..:sad:...i am being moved from gp to lupie clinic.to gp ect....bloods ect ..as usually done...but because i havent had a high ana test latley they are only 98% its lupus....and i know they are doing the "eliminating thing" as its not this..or that...but in the past 6 weeks im so tired and i cant be bothered to do dinner....if i do...i dont fancy it at all........even if someone else cooks..i cant be bothered to do anything....i do work ..4 hours for 4 mornings a week...its admin work so hardly hard?!!
I look tired and worn out..and i feel it too.....i asked gp to give me something as i was getting agitated...he said "well you always seem ok when you come in here?!!!" so if i went in to see him crying and having a break down that would mean he would take notice then?...i know its hard for hubby too....but im not me anymore! gp has given me diaezapan....i am on anti deppressants and have been for 3 years now......but i havent ever felt this bad...
My joints hurt...my fingers swell up ...all of them...iv got a headache thats always there?!!! well at the moment.......my eye sight has got really bad...im sooo tired...iv had a rashy face and its annoying, its red then goes dry and scaley...no matter what i put on it....im starting to think other people think its all in my head?!!......................

Sorry for the moan...i cant always moan at hubby he worries enough as it is..:lol:....thanks for the moan...jane

>>I look tired and worn out..and i feel it too.....i asked gp to give me something as i was getting agitated...he said "well you always seem ok when you come in here?!!!" so if i went in to see him crying and having a break down that would mean he would take notice then?...i know its hard for hubby too....but im not me anymore! gp has given me diaezapan....i am on anti deppressants and have been for 3 years now......but i havent ever felt this bad...
My joints hurt...my fingers swell up ...all of them...iv got a headache thats always there?!!! well at the moment.......my eye sight has got really bad...im sooo tired...iv had a rashy face and its annoying, its red then goes dry and scaley...no matter what i put on it....im starting to think other people think its all in my head?!!......................>>

Hi Jane!

I'm so very sorry to hear you aren't feeling well. Trust me, you & I are in the same boat. I'm tired of throwing up every single day... I'm losing appetite lately. I'm sleeping so much that I really don't even want to get up. I do only because I am so tired of my daughters telling me I'm not being a responsible mother and that I'm selfish and lazy. (In their words).
In 2007 I glued myself in the master bedroom. I refused to leave the room in any way shape or form. I didn't want to see anyone, talk to anyone and that even included phone calls. I didn't even want to talk via email. I got so tired of feeling so lonely and saw patterns where I always had to initiate an email, a conversation, a phone call, you name it... No one willingly communicated with me and that made me very, very lonely. I never could understand why that was. The only time they communicated with me is if t they saw my art and indicated in their own pecular way how much they loved it... giving me hints to just give it to them... I won't do that ever again... Anyhow... I decided to stop everything and guess what, not a single person cared! I got not a SINGLE CALL.... not a SINGLE email, or anything at all.... It's amazing how I ALWAYS found time to help them and fly out to be there for them but in return not a single, How's Heidi feeling? How is she today? Nothing... I fell into a very, very deep depression... I saw a commercial on television last year and it was about people in depression and it seemed to fit what I was going through... I made an appointment and told my doctor I wanted for him to prescribe "Cymbalta" and he did... it helped me a GREAT deal... however, I am finding that I may be slipping again... I don't know if it's because I'm not feeling well non-stop.... I'm in constant excruciating pain... etc... the girls have expressed over the weekend that I'm very selfish, not a responsible mother & very lazy. That feels like an arrow right through my very core.... it hurts. Even my husband will slip and say that I'm lazy and need to get moving... I so WISH I could open my innards and they could perhaps 'SEE' the pain I endure day in and day out....
You are NOT alone... You really aren't!
As far as joint pain goes... Have you ever tried "Voltaren"? It works really well. When it stops working, let me tell you, the pain in my left knee is crazy... my right shoulder is often in pain as well as my wrists... (That's very normal for people like myself)... but voltaren is a godsend for me. Right now it really is time for me to have another injection in my left knee. I like to put it off as long as I possibly can. I don't like needles, I don't like the medication even though the orthopedic uses extremely low dosages. It helps though... Anyhow... as far as eye goes... I couldn't even tell you a thing about that. I certainly hope & pray tell it isn't related to lupus. I don't care if they take my legs... but not my arms and not my eyes for it is my only form of communication. Does lupus affect eye sight? I do suffer from very severe dry eyes... they very often feel like sand is in them... I can't explain it but it's very annoying. I have plugs in my eyes now and it helps a lot. I also take ahhh... I forgot what the name of the eye medication is... resty....something... it helps a great deal. I cannot live without my glasses though.
As far as migraines, join the club... ugh! I take Midrin & Fioricet for that. Sometimes I get them days on end and some times it goes away for a couple of weeks at a time which is a haven for me!
Trust me, I'm right with you. I really am. I DO feel your pain. I'm sorry you are working as well.... I don't know what it's like where you are... can you perhaps take disability leave for a while, or at least until you are back on your feet? You'll get paid... but I think you'll 'lose' 5% pay... I am not sure because it's different everywhere. I would definetly sit down with your boss and say lookit... I've got a bad flare up right now and am barely getting by in terms of functioning... would it be possible for me to take a disability leave at least until I can get back on my feet & function? Could you try that?
I will send positive thoughts your way and hope for the very best. Think positive as much as you can... I know that's so much easier said than done... but try. At least I'll send positive thoughts your way. :bigsmile:

~ Heidi
"There are many paths to enlightenment.
Be sure to take the one with a heart."
- Lao Tzu

 

[Leora]

Sorry....

Hello,

hno:
I'm sorry for the previous post... I did a 'copy/paste' and then check marked the box where it states something about adding quotes.... I thought it meant to use the 'copy/paste' quote I used. I had no clue it would mean putting someone's entire message into the message I'm typing in. I'm sorry about that. I know what to do now.... I'll just copy/paste from here on out w/o clicking that 'box' about quotes. :flower2: