RE: RE:my attitude!

[Guest guest]

Wow, I can sooooo relate to your posts Elly and and all really. Sorry to

hear everyone having such problems. I spend most of my day in my bed, but I sit

up, I'm on the computer and I get up many times a day. I am planning a

vacation, and it is so stressful and overwhelming. Although we (my husband and

I) haven't been on vacation for 6 years. It's only a short 4 or 5 day stay in

Laughlin, but preparing is exhausting. My husband who is also disabled with

chronic pain and pyschiatric problems due to 3 neck surgeries, one that was

botched by the tip of the blade breaking off during surgery and traveling down

the spinal canal. He has been a bass player for 40 years, in rock, blues, jazz,

etc. He can no longer be in a band, which caused depression leading to pysch

problems. He has become the total couch potato, no how much I gripe and

complain to him to get up and do something. Anyways, with my Lupus, S'Jogrens,

fibro, and osteo problems, I still have to deal with his needs, his doctors,

attorneys, work comp BS and so on. I told him a few days ago that he needed to

get up and start walking around a little more to prepare for Laughlin. He said,

like the smart A he is, I am ready. And with his finger pretended to be hitting

the bet button on a casino machine. I could have broke his finger at that

point, lol. Finally I told him how overwhelming it is for me to get it

together. Using all my SPOONS just to ge ready for this and wondering if I

might have to stay in the room to recoop once we get there. I am finally

winding down, after many prayers for peace within, and think all will be ok.

But I could certainly relate to your posts I had to respond. We leave on Monday

and I am really excited. A dear friend of mine and yours is going with us and

can help with the driving. We will be dropping her off to visit relatives

there. I am so blessed to have her as a friend for the last 30 years. Just do

what you can do, when you can do it and forget the rest. I think I may be

rambling now, sorry. I wanted to relate to Elly and the relative who says " if I

didn't know better " , etc. My daughter has recently had some anxiety attacks

bordering on panic attacks and feeling awful. She'll be 35 next month, teaches

Jazzercise 4 times a week, has a part time job and married raising 2 children.

She is very active and always on the go. She was crying and so scared that she

would be like this forever and that people don't listen to her about what's

going on. Well the sad part was that at least for the first year of my

diagnosis, I didn't get support from her. I could tell she really didn't think

I was that sick. She would make comments. I finally broke and said to her, if

anxiety and the feelings that can go with that was all that I had, I would be a

happy camper. I told her that of course I don't want her to have this forever,

her biggest fear, but I reminded her that my own family, kids especially didn't

really believe I was ill at the beginning and SHE will definetly have my support

if this is a lasting and permanent problem. It was hard to do but I had to

remind her of what they thought of me. I think she now understands that

sometimes illnesses don't show so much on the outside. Anyways, sorry for going

on so long but these posts touched me just in the right spot and couldn't not

respond. Hoping EVERYONE has a better year, better health, and better support

for the year of 2012.

>

> Hi elly,

> So sorry you are going through this low right now. Sounds like you had a virus

of some sort that is still running it’s course. Our immune systems take awhile

to battle these dragons, but remember they can and will be slain. The extra

worry of whether things will be allright adds to your illness. the truth is,

that it will be allright somehow. On the trips, if you need to excuse yourself

from an activity here or there and stay in the hotel and rest for a half a day,

at least the other half will be better and you can be included without your

family missing out. This is not for anyone to feel guilty that things cannot be

perfect, it is about acceptance that this is just the way it is! We did not ask

for it. There is not one to blame. You can’t do more than you already are to

heal except maybe take stress breaks from guilting yourself and relaxing more.

I’m sorry for your pain, in your joints and hips, knees and shoulder that is

so real. It makes making decisions hard. Just treat yourself kind and never get

on your self for being fat. I’m fat too and I haven’t always been. Lately

I’ve been embracing my fat and it being part of me. If I would like to say

good bye to some of it when I’m feeling better and in the mood to diet, then I

will. Until then this is who I am and I better learn to accept it or live sad

and depressed about it. Go slow with yourself. The time you have been sick

can’t really have been that long, and it takes so much time to get well. I

have issues with my lungs and so do many people with low immune function, and

the lungs seem to get very hardly hit. They seem to be involved during any virus

our cold and we just need be fortunate it doesn’t turn into pneumonia which

happens easily. I put myself to bed when I’m sick, and get up a little here

and there until I feel up to doing more and more. I nurture myself as if my Mom

was alive to put me in bed and take care of me. In bed I get the rest in a

comfortable environment, warm and cozy and I don’t find I’m making myself

run around when I’m not ready. Needless to say I spend a lot of time in bed.

Each day it is my home base and provided me comfort and healing. The humidifier

is in my bedroom, my cpap machine, my bills to pay, my camera and computer

laptop, so it’s all done from bed. Dressing oneself and grooming are a chore

for me too on bad days, so I stay in bed and just do wash up baths, brush my

teeth and cuddle with my doggie Lucy the boxer, 11 years old for comfort. If I

have phone calls, all made from bed. The fax and copies are not to far from the

bed and if that needs to happen, it’s easier. Some day maybe it will not be

like this, but for now feeling this bad I can’t imagine myself being in the

kitchen cooking up meals and cleaning house all day. no way. so just keep taking

care of you and you will be ready for the trips when they come. If you are like

me, I start a week ahead of time and wash the clothes I want to take and wear,

and pack and put my meds and OTC meds in my suitcase and the last day or so if

I’m living out of the suitcase, at least I’m ready to go. A trip is a big

taxing event on the body. So go slow. The worst that can happen is you have to

cancel and send your family anyway. I’ve had to do that and it hurts some, but

I listen to my gut, which is from God and the answer about what is best to do

always comes. Sending you healing angels to be with you and offer comfort to

take your guilt and shame over the way your life is, and beautiful rainbows to

replace any ugly pictures instead, and finally peace without guilt, and clarity.

Take care my friend. gina

>

> From: elly cudney

> Sent: Thursday, January 05, 2012 4:20 AM

> To: stillsdisease

> Subject: RE:my attitude!

>

>

> Hello everyone,I know long time no hear or here!I am having a bad go of it

right now and I just needed to vent a little,even though I feel like I don't

deserve kind words.I am fat,it seems that even when I don't eat sweets my sugar

is too high! No carbs either!I have a lingering cold,bronchitis sinus thing

happening.I sleep with my mouth open (I know,pretty picture!) so my throat hurts

most of the day!My Fibro is in full on mode,I don't have a muscle that doesn't

hurt,especially my calves that feel like a charley horse much of the time. My

joints really hurt especially my knees,hips and shoulders! I don't want to say

anything to Bill,because he can't be here to help me from Monday to Friday and

doesn't need the extra worry! He would be here 24/7 if he could,so I don't want

to make him feel guilty.I also have a male relative who I'm not sure if he's

trying to compliment me or give me hope,but he insists on saying almost every

time I see him, " if I didn't

> know better,I'd think there wasn't anything wrong with you! " well, yesterday I

had ,had enough,so I said, " gee,if I didn't know any better I'd think you were

smart! " I am normally not a mean hateful person,but the filter in my brain

obviously wasn't working!

>

> The sad thing is,I have so much to be grateful for,yet when I feel sick like

this,nothing seems good!I become a selfish b---h. I hate myself, I need a good

kick in the rear and I know it. I have fabulous trips coming up, thanks to my

hubby and kids,am I looking forward to them? Yes and no! I don't want to go the

way I look and I don't feel good most days and since we're going with others,I

don't think I will be able to keep up as far as site seeing and if I say

something I will ruin everyone elses good time.I have to get myself together

fast,our first trip is coming up in just a month!I will leave it to God and hope

for the best,but I really only want to stay in bed all day every day.I know I

have depression,I just have no way to go and see someone,can't drive and nothing

is open on the week-ends! We live in a beautiful vacation town on Lake Huron,but

it is virtually a ghost town after Oct. to May. Also I have a question,I have a

very deep raspy cough of

> no origin that doesn't come from my lungs.( had a CT scan) and saw a

Pulminologist.It showed the nodes I knew were there,but no reason for cough that

anyone can find.? Does anyone else have this problem?

>

> Thanks for reading,I will get through this somehow and be better I hope!

> love Elly

> p.s.I don't smoke, but did until Dec. 16, 2007 when I had one of two heart

attacks!

>

>