[dixy]

hello

had my rheumy appointment yesterday. wanted to talk about if I could cut any meds down. Ended up having to take 6more a day. I feel sort of like crying but dont know why. Think one of the meds I was taking had been stopped as they wanted me to try something else. This hasnt made any difference. the med they took me off was an antidepressant so perhaps thats y just dont know. the blood lab was closed after appointment so have to go up to cambridge again to get my bloods done. Have rheumy appointment again 4 two months to discuss whether to have ritox again. Although its not a nice treatment Im sort of getting used to it.

Or and this is the scary bit have Campath again My hubbys face well he isnt happy about me having it again. Its been about 2 years now. Im still having weird side effects with my vision. I know back then I was real weak and poorly. So perhaps I might tolerate it better. I had seizure last time. If my hubby hadnt been there I wouldnt be here now as I was in a room on my own. Think I need to talk this over more with my rheumy. Just kinda fed up with all this. I no theres no cure and I have this for life. Sick of all the blood tests and nasty b 12 jabs every 3 months taking masses of pills. Feeling like S***. My skin is dry and horrid like a lizard. The steroid has made my skin thin so I have loads of wrinkles.The weight is creeping up on me just cant be asked to go shopping nothing looks right on me. I know Im getting older. Just cant bear to look at myself. Even photos I just dont look like me if u get what I mean. Hate the sun makes me feel miserable. Just want to go to sleep and wake up and find out it is just a bad dream.

Sigh well thats my rant over thanks for reading this

dixy

 

[KarolH]

(((((Dixy)))))

I am sorry your feeling so down and I want you to know that I understand how you feel, really I get it. All of the pills, shots, constant visits to doctors, blood work that never comes back NORMAL, issue after issue, problem after problem and just when you think you will catch a break......6 more mgs are thrown your way. I feel your frustration and want to send you hugs right now.

As for not liking the way you look, your skin, wrinkles, no one knows who you are or recognizes you................I get it!!! Believe me I understand how you feel here.

I have lost over 230lbs in a little over 4 years and not all of this was by choice. I have wrinkles on top of wrinkles due to drastic weight loss and look 15 years older then what I am.

I meet people in the grocery store who I have known for years and have not seen in a while and they don't know who I am.

I see a friend of my son who is sitting on a curb waiting for a ride and I pull over to ask him if he needs me to take him home.......he does not know me either.

I have the body of a 80 year old woman with skin that hangs everywhere and there is no longer any form or shape, it just hangs.

I am half the person I used to be and less then that when I look in a mirror....what I see is just horrifying to me.

I have been reduced to nothing, every part of my body the same yet I am still the same person inside......a good person, worthy person, caring person, gentle person and giving person.......AND SO ARE YOU!!!:wink2:

Regardless what is on the outside you are loved and appreciated. You are a daughter, friend, wife and possibly a mother who is loved, needed and respected in many ways.

You are strong and deal with many things and yet you are everything to everyone close to you.

Keep your chin up my friend and hold your head high.

YOU ARE A BEAUTIFUL PERSON, LOVED AND APPRECIATED.:wink2::wink2:

 

[Sage Hen]

(((Dixy)))

I am so sorry your feeling terrible in every way possible.

The only thing I can say is what Karol told you is very true. Your loved for being you.

When I am feeling like you described. I try to take pleasure in each small thing that makes my life easier or pleasurable. The very simple things we all take for granted.

For me..I savor a cup of tea. The way lying down on my warm bed eases my body and pain. I try to focus on really small pleasures to take my minds focus off of my pain and suffering. Warm baths help..Perhaps your hubby could cuddle with you?

I do hope you begin to feel better soon Dixy. Crying for no reason is normal when a person has a life altering disease..You have good reason to cry. Crying is good for us..as long as it doesn't go on too long. It relieves stress and tension in our body. I believe our tears cleanse our spirits..

Anyway, please know we care about you for who you really are..Dixy.

Take Care,
Love
Sandy

 

[Katharine]

Dixy :hug:

I can't really add to what's been said. I just wanted to say that I understand and feel your sadness and frustration. There will be better days, lots of them and you have to try and look forward to those.

You're right to make sure you discuss treatment fears thoroughly with your doc.

Lots of strengthening hugs :grouphug2:

Katharine

 

[dixy]

Thanks every one

I only ever cried through the pain when I was at my worst. So why now Im not looking like an 100yr old lady. Think I must be a vain person as I do want to look my best. Just realised I dont look at myself in mirrors any more. My house is full of them every room and I mean it my hall way u can check out your bum lol. Ive never been able to have a good cry. Just a few tears now and then. Must make the effort to book a meditation class badly need to do this.

Phew well off to get my bloods done as they were closed when I had finished seeing my rheumy. Well theres 14 ticks on the forms so 14 files of blood. Just off to get my best friend EMLA cream. Have to travel 3o miles to get them done .

thanks again for your kind words

dixy

 

[Lily]

((((((((((((Dixy)))))))))) just wanted to reach out and give you some hope and hugs and let you know you are special and yes........... you are loved :grhug:

love
Lily

 

[dixy]

thanks

I know I shouldn't b so hard on myself. I'm so lucky to have a supportive hubby with out him I wouldn't have made it. My friends have been great too and surprising just small things make a difference. Guess I'm just feeling sorry for myself big time.
well went to a PH support meeting today they took a group photo but I wouldnt have my pic done. Last thing I need at the moment hate photos of myself. Hope they don't think Im stuck up. wish I hadn't gone now just thought going might make me feel better. Guess Im more depressed that I thought.
well survived the bloods Had baby needle and the nurse was very patient with me all 14 of them have to phone next week to check they have looked through them. Then see rheumy in two months or sooner if they r bad.

dixy

 

[KarolH]

Please let us know how the blood work comes back Dixy and I am glad your going to the group. This can only be a good thing.:wink2:

Hope your feeling well today.

 

[debatat]

((( Dixy ))) sorry things are so tough for you at the moment. It is good that you went to the support group, lots of people don't like photos either!!!

I hope your bloods come back ok.

Take care

Thinking of you

Deb x

 

[annie1971]

dear dixy

i too want to lend my support and a big cyber hug whilst you are going through this difficult time. I know how hard it is to see your appearance go downhill and it is difficult to feel good about yourself, i also hate photos. Whenever i have posted on here you have replied with kind and caring responses i have really appreciated it.

Please let us know how you get on with the blood tests

annie xx

 

[x_claire_x]

Hi Dixy,, sorry you are feeling so naff at the moment... 14 vials of blood?? sure you are not being treated by vampires?:rotfl: 14 ticks doesn't usually mean that many... just that many tests... anyway hope you are not too holey and that you are feeling brighter soon.. until then lots of hugs:hehe:
Claire XX