A pitty Party…

Stacey,

You tell it like it is! That is the way to go. If you feel bad then by golly you feel bad and that is that.

Why not whip out a pencil and a pad and write a letter to the world telling all just how you feel. Then read it. Ask yourself if you really need all that stuff and want to hang on to those feelings. (Don’t kick yourself here. Feelings are feelings and real.) If you want to let them go put a match to them and say out loud “bye bye”.

Yes, it could be worse but it could be a whole lot better. Mad and sad and sorrowful are ok, just feelings, it’s what you do with them that counts. (O lord, I’m getting preachy here) Tie a knot in the end of the rope and hang on.

God Bless you Stacey,

I know exactly how you feel. Listen, you seem to be getting worse and I don’t know the exact details of your treatment plan, but, tell you doctor
your in decline. He will have to muster up some ideas and try more, different or additional things. Tolerate Side effect, what ever.

Use the cane. I did. Can you Imaging me walking into work where there are all these tough guy Jet Mechanics, There I stand propped up with a cane, at one time, just like them, strong and vibrant. I did it. I was not mocked at all. If anything it make them think abit. The only place I couldn’t get up to do it was at church of all places. When you do get better enough. Its nice to put the cane in the closet.

I was tearing up all the time to myself, with my daughter, at family functions, before bed. Its OK. but in the mean time don’t give up. Push the doctor.
You may be tired of pushing them but you made it this far. Don’t stop.

Your Friend–tim–

Hi Stacey,
This is coming from someone with a poor prognosis, and have been dealing with death issues the past two weeks, as I am being forced to complete my Advance Directive, (Living Will), to submit to the hospital, as my doctors think I will be running into some bad situations in the near future.
But, I am dealing with it, and have been working with some people over at the ALS Forum, that I know I can extend my life, and still have a decent quality of life living with a trach/vent.
But here is something you can do…I have done it, and it allowed me to vent some frustrations…
Go out to the airport. Park your car on a road near the end of the runway, where the jets take off, (I don’t know if there is one at your Omaha Airport, but try to get as close as you can).
When a jet takes off, SCREAM the loudest you can. And SCREAM AGAIN when another takes off. Cry your “eyes out”. SCREAM AGAIN at another take off. Your screaming and crying will soon turn into laughter. Even take your son or hubby with you. They will also enjoy this act, and all will end in laughter. It feels good to get it out.
I was told this by an old friend who is a psychologist, and I must say it did feel good.
Keep up a “stiff upper lip”, Stacey. Things could be a lot worse–I hope you never end up in my boat–the boat is full. And YES, DO use your cane. Get a fancy one to show it off. Ignore the ignorant b..tards who would dare to make fun of someone with a cane. You will know who your true friends are.
Take care,
KEDASO
(Ken)

Stacey,

I am honored that you have invited us to your party! That is what we are here for. WE DO UNDERSTAND AND KNOW HOW YOU ARE FEELING!!!!

Just wanted you to know that you are not alone. It is so frustrating to look normal but be in sooo much pain. I am not sure of your arrangements at work but I went off on long term disability. Best decision I have made!!!!

I also have a young family and felt it was more important to spend my quality time with them and not the people at work that talk about you behind your back!

My co workers belief that I have made all this up so I could go off on LTD.
I must be really good to fake all the medical tests!

I think it is important for our kids to see us hurt, often tears are the only thing they understand to know that mommy is hurting real bad.

My mom passed away a couple of years ago at the age of 58 (cancer) and I really miss her. I was only 41! So we didn’t get to spend much time together.

The one thing she told me to do every morning is before you get out of bed every morning is to check your big toe…if there is no toe tag attached you are going to have an OK day! 😀 So I start each day with a new beginning and whatever happens I know it is just 1 day and tomorrow I can start fresh!

Sometimes that is the only way I can make it until the end of the day.

I am sending you hugs over the computer,
Take care and know that we are here whenever you need to vent!

Rhonda

Hi Stacey,
Well I know how you feel, i’ve been feeling the same way here lately. But, I know that will pass. Ken’s idea of the airport sounds fantastic. I swear he should write a book for the rest of us. Just remember you are allowed to feel the way you feel. I agree you need to be very direct with your doctor and tell them something just isn’t right. Find things to do that won’t tire you out but are still enjoyable with you and your family. Have a pajama party with a movie night combined..make sure everyone wears silly pajamas and silly slippers. make a little stuffed doll (that will be very misshapen) and use it as your damn it doll..every time you feel bad bang that doll all over the place..sometimes that helps but doesn’t wear you out..and when all else fails call one of us and cry on our shoulder …that’s what friends are for.

hang in there..

I guess I was lucky in that I mostly had to deal with this all on my own. My poor DH didn’t have a clue – w/the standard ‘you don’t look sick’ line.
Finding time, place and space to do as Kedaso says LET IT OUT is cruical.
I went thru the whole ‘why me?’ stuff, and cried myself silly..then napped!
I’ve had this all for 6 years now [this is my ‘anniversary month’?] and how I cope now is to try and redefine my life and seek ‘stability’ in any way I can!
Medically, my neuro says ‘I’m Stable’…meaning not getting any worse.
Emotionally? I sort of feel I have to review myself each day as to what all I can do to achieve ANYTHING at all! If nothing’s done? Well, nothing’s done! That is all.
But, I don’t have kids either…and you have got to put ‘cane embarrassment’ concepts on the shelf as you need that cane! Plain and simple. Yes you are ‘different’? But that difference is special in my opinion, you are more sensitive to others and certain needs/aspects that others are clueless about.
I believe others have stated things well. It’s a party that we don’t want to be at? But I’ll bet we can find stuff to laugh at and lots of it.
Hugs and good things soon!

I think a short term pity party is o.k., as long as you can find some sort of release and move on into say some kind of fiesta party for Stacy…. Maybe you should indulge, and get yourself a sitter and go out for the evening…
We all have those days, and I sure have had mine, but there is always someone who has it worse…. For instance, I was at a swim meet today, and found out one of the neighbors has cancer… Not good…. Then someone who was there mentioned about my recovery from gbs, and said her uncle has come down with it, and has been on vent since January.. Small world..
Its hearing about other peoples issues/dilemmas that perhaps help us to put our problems in perspective…
I guess something that helps me, is to just take it one day at a time, and enjoy as many good things you can, while you can……. I like Kens idea of shouting out some steam!
Hope things get better.. It’s gonna be a great day watching your son ride a bike I’ll bet….. Deano:)
Just think Stacey, at least you don’t have 4-6″ of snow on the ground like we do up here.. A person can’t even walk around in the yard….. I’m watching geese landing in our frozen pond.. What a sight….

Stacey,

Tell the people that you work with to shove their attitudes where the sun don’t shine! 😮 Hope you get to feeling better. 🙂

Jim

Hi Stacy,
Been there too, will a hug help!

[IMG]http://yfrog.com/09grouphugsmileyg[/IMG]

Hi Stacy,
I think we’ve all had that kind of a party for ourselves. Would a hug help!

[IMG]http://yfrog.com/09grouphugsmileyg[/IMG]

Hi Stacy,
I think we’ve all had that kind of a party for ourselves. Would a hug help!

[IMG]http://i143.photobucket.com/albums/r134/maybowe/grouphugsmiley.gif[/IMG]

Stacey,
I’d get on the soap box but I’m too tired this morning after spending the evening screaming at airplanes (thanks Ken!) so here is just a few thoughts instead.

I think you should trust your instincts. My husband is one of the most “in-touch” people I know but he still can’t pick up the subtleties of body language, inflection and tone of voice. However, just because your step-daughter doesn’t like you doesn’t mean you all can’t come to an understanding and get along anyway. Some of it is her age – I don’t have kids but I swear all my nieces and nephews went through a phase of hating their parents and feeling like the world was supremely unfair to them. I think they got over it by about 15 or 16 when life outside the home became more interesting and perhaps they got some perspective from their peers. At any rate, since it bothers you would you feel comfortable talking to her about it? I know my 12 year old niece is really into doing “adult” things now – wants to “get her hair and nails done” and “go to lunch with the ladies” and sit in on all the adult conversations and so on. She was driving me crazy until I figured that out and we worked out a deal wherein she gets some adult time but then has to leave us alone for the rest of the adult time. Now I wish they lived closer so I could spend more time with her. You seem to be pretty intuitive so maybe you can figure out what your step-daughter really wants and work out some kind of compromise.

Your co-workers remind me very much of a team I worked with back when I worked for the Federal Gov. There is this sense of “I can’t get fired” and so there was a decent amount of immature behavior – as an example – one morning I opened my file drawer only to find someone had dumped an entire pot of coffee over all 40 of my project files. Yeah – these are the people administering our government… ANYWAY, I went through a range of emotions from being ticked off to feeling sorry for them that their lives were so small. They finally decided I wasn’t such a fun target when I just quit caring at all – no matter what they did I just didn’t react to it at all and it took the fun away from them. And yes I felt like I was back in Kindergarden and… sadly… I left six months later when my commute got to be 2.5 hours each way. One of the things I found helped in the meantime was wearing a Walkman at work (they didn’t have iPods then…) so I at least didn’t have to hear them giggling and snickering. Obviously you have to judge whether this is appropriate for your work but it was fine for mine because we mostly worked independantly on our set of projects so I really didn’t have to communicate with them except for staff meetings. Setting the world to your music can make a HUGE difference! If you can’t do that then try to have your favorite song going through your mind as background noise… And remember – if they were happy with themselves and their lives they wouldn’t be making fun of other people.

I don’t have any advice to give you about what to do about Connor and your honeymoon except maybe to look beyond your family as possibilities. I’m too far away to babysit but I’d do it if you lived near me… there may be someone you trust that you just haven’t thought of yet. What does Connor want to do?

And take it easy on yourself too Stacey – I think we all go through this to varying degrees and frankly it makes me feel better about my own emotional spasms to know that it happens to other people too. If you can’t make it to the airport to vent then start saving up stuff you can break, stick them in a pillow case and beat them on any available surface. Or hit them with a hammer or whatever but I recommend the pillowcase unless you don’t mind sweeping. I also think pottery is a good for venting and semi-productive as well. Clay can take a lot of personal abuse and never minds an extra smack or two. Best of all if you don’t like what you make then you’ve got something to smash!

Take care Stacey, hang in there and try to have a decent weekend.

Julie

Just my opinion, not that is worth much!!
I personally feel that things do change when there is an illness. My best friend of 15 years just disconnected when Kevie got sick. I thought she would be compassionate since her husband is a doc. My firend that I did the fundraiser disconnected too, granted she has her own issues. My mom as well. I have come to the conclusion that people don’t get it and when they do, it requires time and energy to listen and be supportive. Those are things that unfortunateley people are not willing to do or give up. About Penney, she probably falls into that category somewhere, she did afterall come to the symposium. She just may need a break right now to get into being a grandma. Four days will be over before you know it, you made the plans, just do it. Try to enjoy the time otherwise everything is for nothing.

Regarding your stepdaughter. I tell you this with some experience I have just gained. 12 y/o in general start to not show the love anywhay. not to mention she has to share her dad with you and Connor. My 15y/o went through that phase and still bareley mutters anything to my husband (his dad, not a stepchild) I am veryu close with my older son and was barely able to sneek a hug from him, plus he had to deal with the illness. So… in time it will probably pass. Maybe just let her know you realize she has much to deal with and respect her feelings and let her know that you are available to talk when she wants to on her terms. Keep it light, not like you are trying to force the realtionship and try not to include any but…… in the sentences. Put it all on you, then she might feel less inclined to be defensive? It will come around!!!
Dawn Kevies mom

Boy, oh Boy, a really great party, and I came late !! Oh, well, a day late and a dollar short again 😡

Stacey, I am amazed at what you still can do. You are still so-o-o-o busy. Full time work, taking care of kids, and a marriage, and a house, and still doing some things with your kids.

We can probably all line up with you, needing a big pity party one time or another. And I agree, it totally stinks. Emotional stuff piles up, workplace aggravates, family frustrates. I wish I had a magic bullet to help you feel all the way better.

Dr. told me some things I didn’t listen to at first but should have sooner rather than later. I’ll pass it along. Take care of yourself FIRST. I know you are a giving person. But if you give, give, give, you will be give out.

Start out once a day. Say NO to somebody and be nice to yourself. Maybe a bowl of ice cream and 15 minutes to yourself. Nobody else will let you have it until you TAKE it.

Make a priority list something like 1.) husband 2.) family 3.) self 4.) work 5.) house

When you have a conflict about what to do, look at the list, tell someone “I’m sorry.” and decide. If you don’t decide for YOURSELF enough, there won’t be a YOURSELF to be nice to.

Tell those people at work to kiss your *&%$” You are not walking with their feet, and they aren’t walking with yours. You need what you need. If you need a cane to get around, who is losing out if you don’t use it? Like I say…… I am sorry they do those things at work and make your time less productive.

Follow the list, and take time for yourself.

I have cried myself to sleep more times than I care to admit. CIDP hammers us. BUT, you have your family, love counts for a lot. I would be totally lost without my wife. If you love your spouse, the rest of it takes care of itself.

Take care, you can pull through. you can count on me to kick you in the pants (when you need it), and help your pity party a little bit when you need us to be here as well.

Dick S

thanks very much Stacey for writing this. I think we all understand. I am so sick of being sick and also miss all the things I cannot do any more. i cannot imagine how hard it would be to go get a bicycle for my child knowing that I could never ride with him or run along side while he gets used to not having training wheels. Today is a different world, but in the world of my childhood long ago, these were very important.

Like all the others, I would also encourage you to use a cane if it helps you to get through the day better–think of it as your gift to family time because work is not all of life nor always the most important part of life. Keep being kind to all and set a good example for all those that are scared of any sign of weakness. I have always thought myself a strong person, but these last two years have redefined what strength is to me. Truly you are amazing with all you do despite the challenges in your life. Do not let anyone put you down for using a cane to help save energy for more important things.

I have another tiny suggestion–let go and enjoy your honeymoon. Conner will be okay. Your sister is not you, but she does not have to be his mother only keep him safe and watch over him for four days and she will. You may hate to leave him and he may not like it that both his parents are away, but he is old enough and wise enough (which he gets from his mom) to understand. I even bet your sister would understand if you told her that it really extra hard for you to leave him because you are always working extra hard to be the best mom and feeling a little guilty about what you cannot do because of the disease. I know this bothers me–I keep trying harder and harder because I do not want anyone to think that I am weak or not able to do what I “need” to do.

Listen, honeymoons are supposed to be about two people–no worries about all the other joys and responsibilities of others in your life. I hope you are going somewhere where you can just be you two. Love is not what you do or how you look to others-it is what you feel and GBS/CIDP does not affect the ability to love except maybe to make it even greater.

WithHope

It IS important to let-it-out every now and then. Don’t keep it in, ever. It is important too to let your kids family and co-workers know that you are ‘different’…but not so different as they can’t talk be civilised and hug.
Go on your honeymoon! Go out and PLAY! Don’t even think about HOW are we gonna do this? Because this is a time to get [re]acquainted and share your love. Withhope is soo right about this aspect.

Connor is smart enuf that if HE can’t stand it? He’ll work around it or call you.
You’ve raised him well and it’s an opportunity for him to learn how to fly a little. How he lands from it will be a good guide as to how to deal with ‘things’ in the future. I believe other moms here will tell you that kids are a lot smarter than they let on at times.

YOU DESERVE some treats for you AND YOUR HUSBAND! Relay any fun things [not too personal mind you] so many of us can enjoy vicariously! Promise?

Hope and fun this time!

[SIZE=”4″]Man, there’s a lot of people at this party. I feel your emotions. I have days that are so frustrating, I wish I never came back from the dead. Lately I don’t know. I curse the Lord & then apologize. I wonder what I did to deserve this. In my life before CIDP, I tried to make everyone happy. I just get my life on track(pardon the pun,I’m a locomotive engineer) & I get struck down with this.There are days when I want to rip my hands off because the tremors are so bad. None of the pills worked on the tremors. All I got was the side effects. The good news is my BP is back to 110/70. While on the meds,it was 165/100. We have to try & deal with our bad days. We’re going to have them. This disease can really get a person down. We need to try & beat it at its own game. Get me another drink!!!:D [/SIZE]

Pity partys are good, its when you can’t enjoy them when it becomes a problem. Soo Enjoy it Stacey!:) Your Mom is still with you, she is just showing you how you can handle things on your own, in your own way and time. As for the cane, get it, use it and show it off. You are better then those who make fun of others. They will learn from you. I use a cane, and a rollator when needed. I decorate my cane for every season and holiday. It helps me accept it when I have it my way:D You will have a change of heart after an older person pays you a compliment or even a younger person does. The important thing is you will be able to do more with your family when you can walk easier with a cane. I get out and shoot a few hoops with my kids, cane in one hand and the ball in the other. My kids say I’m cheating when I use my cane, its like a third leg and it helps too much:D
Hope you have a Great trip with your better half! Enjoy it to the max!!!

I found that an amusement park ride is great for releasing bottled up anger! I use the roller coasters as my stress busters.:) I can’t wait for Cedar Point to open again!!

Hi Stacey,
Sorry I am late to the party. I’m always a couple of steps behind. Literally. 😮 I am so glad to hear you put it all on the line. I mean, I am sorry for your pain, truely, but it is in some ways helpful to see and hear the real deal from someone else. I think sometimes we all try so hard to present a positive front for eachother and ourselves and don’t always allow for the not so pretty feelings. And the truth is that is why we have this forum. Because this disease is hard and isolating and we all need to know that we are not alone. I have to tell you that I always identify with you the most because of the progression of your disease is simialr to my own. I often apply the stages of death to the acceptance of this disease. Denial, Anger, Bargaining, Acceptance etc. And just like the process of death, these stages are not linear and can ebb and flow. Sometimes we are at a peaceful acceptance, sometimes we are at a peaceful denial, and sometimes we are just purely pissed. It is all equally valid. One thing I find helpful and have needed for over 20 years in coping with childhood diabetes is my psychotherapist. Especially because our disease(s) are “invisable” and we don’t get a lot of outside support, it has been essential for me to have that outlet and help in working through the issues that chronic illness presents. Your struggle with the cane is so similar to mine with the AFOs that I still buck wearing and pay for later when I don’t. But that’s all part of the acceptance. I just hope you can get to a place where you are not fighting so hard and are getting assistance so that you can live with this rather than against it. Just know that we are always here for you. And thanks for your honesty.
All my best,
Linda

Well put Linda.:)

Stacey,
You help every one of us by being so open, honest, real and everything in between. And many times you have been the voice of compassion and concern. Never doubt what you give.;) Glad you’re feeling better. Hang in.
Linda

Hi Everyone, I’ve been reading this forum for about a year. Stacey’s post really touched me, as I was just coming out of a pitty party of my own. I love this strand because it really does speak so honestly about post GBS life, which is almost incomprehensible to folks who have not been through it. I had a mild, mild, mild case back in August 2007. Yet two weeks ago I was calling to find out about handicap parking tags…I guess finally admitting to myself after almost two years that life has really changed for good. I have read so much incredibly valuable information on this forum. Thanks to all of you who share so openly. This forum has been crucial in keeping me going mentally and physically for the past two years. I hope some day I can reciprocate with some wisdom of my own, as others travel this road. Thanks, again…l2s

Stacey,

Now you are getting the right attitude! 😀

Jim