Couldn't do it....just couldn't

[timer lady]

bring myself to go out in public today.

I met with several doctors this past week - so many things going on in my body. So many medications floating about my system.

The physical changes; my face - my entire appearance has changed so much.

husband & I were supposed to meet his sisters for a late holiday gathering tonight at a fairly upscale restaurant. I couldn't do it.

I can't bring myself to go out unless it's to a grocery store or doctor's office. And I'm struggling to do that.

I encouraged husband to go with-o me - he refused. I wished he had.

 

[mrscatinthehat]

So sorry you are feeling this way. Hugs to you.

Beth

 

[VLong]

Linda,

I am so sorry you're feeling so down. Will keep you in my thoughts and prayers.

Vicki

 

[Wiped Out]

Linda,
If I had a magic wand and could make a wish it would be for your full, quick recovery. I'm sorry you are feeling so down right now. Gentle hugs and prayers to you my friend.

 

[Lothlorien]

Sending hugs. Really!

 

[DDD]

Ditto. DDD

 

[flutterbee]

Sending understanding hugs.

 

[busywend]

Linda, I am so sorry you feel that way. I, too, wish I could wave a magic wand and make it better. husband is sweet not to go, but that would make me feel worse, like I deprived him, too.

I hope it gets better soon so you can get back to going out for dinner.

HUGE HUGS!!!!!

 

[TerryJ2]

Ohhhhhhhhhhhh, so sorry! You husband was sweet to stay home.
Take care.

 

[jannie]

Sending great big hugs !!

 

[Hound dog]

Sending many warm ((((hugs)))) Linda. :flower:

Don't go out unless you're feeling up to it, emotionally and physically. The emotional toll of a long term illness can be just as hard on you as the physical part.

 

[timer lady]

I so appreciate your understanding hugs. They have been needed of late. I guess the depression part of this long term thing has hit - that along with the long term steroid treatment is playing havoc with my emotions.

My GP is ready to send me to a psychiatrist to help with the emotional end of things as the steroids are not going away. In the meantime, as my insurance has changed, I need to find a new therapist.

I intellectually know these things - I can't seem to get it together enough to act on. Seems a tad silly; can do it for kt & wm but not for myself.

I'll get past this pity party & go onto another until I get through all the acceptance of the changes in my life; my body. I'm determined to push myself to my highest level of functionality AND I know I may never get back to where I used to be. I hate that but must accept it. I think once the hating/resentment goes away I can move forward. No matter the course of treatment or prognosis.

Let's face it ladies, a syndrome with only 200 plus known cases doesn't have much to go on. It doesn't have much of a prognosis. As the oldest person diagnosis'd with this syndrome I tend to look at the unknowns; especially in a person of the ripe old age of 51. I need solid evidence. I'm not one of those people who's willing to be a research experiment for the benefit of others.

Okay, done whining - I'll move on for the day. There's laundry to do, menus to plan & groceries to order, have PT this coming week & a repeat fluroscene angiogram to be completed. kt must be seen by her pediatrician. And this is normal stuff & must be addressed. No time to whine.

 

[mrscatinthehat]

Well sure there is time to whine. That is what we are here for. You whine all you want. You deserve to get it out. I will send along some cheese to go with it if you like. :smile:

Hugs
Beth

 

[hearts and roses]

A little late, but sending some more warm hugs, LInda. It was sweet of H to stay home, I'm sure he thought it was the right thing to do (showing his support for you) but I do know that I would have wanted my H to go along without me. Somehow, it's easier for us to give something up but it makes us feel bad when it seems we're holding another back. Hugs - I hope today is a better day.

 

[SRL]

Linda, my closest friend has a long term chronic illness so I've been close as she's gone through many of the things you have: depression, anxiety, not wanting to leave the house, etc. Until going through this I never realized the huge impact the emotional has on the physical and visa versa.

Have you looked into any general support groups for people with chronic illnesses? I know you won't be able to link up with those having the same syndrome but I know when my friend meets for coffee with a few others it does help. Because they understand, they choose quiet times of the day when there won't be a lot of people and choose a location with little stimulation. Just getting out helps.

 

[Star*]

Linda,

Don't miss a day to let rain hit your face while you can.
Don't miss a chance to show the world where true beauty lives
Don't underestimate your emotional ability to continue to do things that your physical being is telling you to stop

You ARE beautiful
You ARE loved
You ARE who you are -

I would not stare - I would not gawk - I would only laugh with you and tell you I think you are very brave.

I wouldn't let this cheat you out of one single chance to laugh out loud with family and friends. And the rest of the world that gawks, stares and points - corkscrew em. They've just never seen beauty done up in such a unique package acting with such grace that she LIVES her life - on HER terms.

You're still you -
Hugs
Star

 

[TerryJ2]

Ohhhh, what Star said.
I couldn't have said it better.


:flower:

 

[timer lady]

Star,

Thank you - this brought tears to my eyes & a bit of courage to my soul.

I can do this - I know I can.

 

[susiestar]

Star said it so beautifully. YOU are so beautiful. So amazing.

Chronic pain/illness support groups can be a big blessing. I belong to one that is largely women my mom's age. I have known them for years and years, many are parents of friends from high school. Without their support I couldn't do it.

Please find a chronic pain support group. A depression support group. Something like that is as important as the medications.

I love you, and have been amazed by all you have accomplished in your life. You are pioneering this rare syndrome, blazing new trails. It really stinks, and it hurts.

Please whine all you need to. We are here for you.

Big bunches of gentle hugs,

Susiestar

ps. please have the docs and pharmacists check the medications for social anxiety as a possible symptom. One medication for depression made me suffer with this tremendously.

 

[tiredmommy]

Linda,
I think you are beautiful as well. You have taught me so much in the time since I joined this board. I hope you won't hide yourself away. The world needs more people like you, not less.
{{{Hugs}}} for your achy heart.