Re: talking to family

January 19, 2008

Dear Tracie,

My server was down all yesterday afternoon and last night,

so this is my first chance to read my emails. I am so sorry you

are having to go through all of this........having your family behind

you and supporting you is over half the battle. I have to say mine

has been 100% supportive of me since I nearly died 16 months

ago! And I am so very thankful...... Before that happened, it was

much like you describe.....they sort of ignored me when I would

ask them to do something to help me/make it easier for me/ and

etc.......now, they jump right in and ask what they can do to help.

They are all so caring.......you know that, Tracie, as you got all

the details from my oldest daughter. These kids took off work

to stay at the hospital with me......gave up their vacations and

etc. I could talk all day about that, but what I really want to say

is I hope and pray that your family comes through. You are not

being unreasonable to want things to change just a little to help

you out. You are not asking for much and your hubby and son

should be willing to just jump in and make changes. They just

do not realize how serious it is and how much it would help you.

I understand and I am sure most of our 500 members understand.

We are here for you -- you can certainly count on that! I just

wish I lived closer and could visit with you and support you.

You hang in there and hopefully they will see the light very soon.

Love you, Lady.....

Darlene

NS Co-Owner/Moderator

talking to family

..

January 19, 2008

well, sweet Tracie, I am sorry that you have to try, once again, to explain how you feel to your family. I am sure that most of our loved ones want to live in some form of denial. I sure try to. But after experiencing painful symptoms I have learned to pace myself and to know what I can and can not do. There is no way they can ever fully understand until they go through something like it. I usually just try to (daily) tell them how I'm doing and remind them that they can trust that I'm doing my best to take care of myself. The occasional handout doesn't hurt. I also remind them that if they were going through something traumatic we'd all have to adjust around that, too. It doesn't matter if it's physical, mental, financial.....whether it concerns life, death, family, friends...we have to learn to adjust, to change, to grow. My

daughter-in-law is actually surprised at what I do get done. I just tell her anyone can eat an elephant... one bite at a time. My husband usually tells me not to overdo it cuz I do have that type A personality. ...do do do...accomplish! ...lol. I have also learned to do something every half an hour or so. I rest a lot but I try to keep my house up. I can vacuum for 5 minutes here and there. i.e. chore 5 minutes...rest 25 minutes, etc. Of course i have days when I do absolutely nothing. You have to listen to your body. I wish we didn't have to keep telling our family all this kind of stuff but I don't see it ending anytime soon. It's interesting, Tracie, that you mention dreams. I am reading a book 'Dream Talk, could God be talking to you through your dreams?' Our dreams can be healing us...our emotions, etc. and it's important to listen to what they are telling us. I share my

dreams with others, too, so they understand my fears, anxieties, etc. The book says what God says about dreams and what the scientists have learned about how they work. I wish we just 'knew' what each other was going through but we have to talk and communicate. Tracie, please take it easy on yourself. You have had a lot of tests and need to rest and listen to whatever your body is telling you to do right now. If you're in overload... just asking them to go out to a movie or something that gets them out of the house for a couple of hours may help. When I am like that I need peace and quiet or I pay the price big time. Sometimes I send my hubby out to visit his parents an hour away. That gives me a good four hours to recuperate. The young ones can go paint balling or some other sport. my prayers and good thoughts are going out to you hugs

S.tiodaat@... wrote: This is obviously a major challenge for me, the issue of explaining to the family what is going on so that they can choose to be part of my healing team- or not. Last week my husband and I spent a wonderful week at the coast. For the first time in months, I got up at the same time he did, and I went to sleep at the same time he did. My "normal" pattern has been to stay up a couple of hours after he's gone to bed so that I

can turn my brain off so that I can sleep. Since we've been home, every night is - as usual- a time for Dave and our son to do their workouts. We have a full Nautilus weight system, a treadmill and exercise bike. My son's best friend, a wonderful kid that has been a part of our life and family for the last 15 yrs, also comes over to work out. The challenge is that likes to have dinner, then work out. The boys want to work out, then eat. And no one starts at the same time-- it's a 3 to 4 hour process. Someone will be on the weights, someone on the treadmill or bike, and lots--LOTS of testosterone. My son also purchased a new Play station with an electric guitar, and part of the "fun" is to hook it up to the tv in the living room-- and while waiting for the equipment to come available they all try to learn to play the guitar. The other component is that the exercise equipment is in the laundry room, which serves as my office also--so my computer is in there-- and unaccessible while they work out. So-- I am run out of my living room, my office, and end up in my bedroom. Because of the neuropathy, reading a book lying down is hell on the hands and arms. Now-- and I had a talk tonight over dinner-- and he asked what was up-- while gone, I could operate on the same schedule he's on. So I explained that with all the energy, the noise of weights being lifted and slammed back down on the bars, the guitar, the challenges of who's going to lift more, or do more crunches on the exercise ball (which is also in the living room, since the laundry room is not that big) and the raw energy of 24 yo boys, and one man that wants to be in full energy match with them-- I'm finding

that I go into sensation overload. It makes it so that I let them go to bed, and I sit here and play Scrabble or Mahjong or read-- in the quiet of the night. Hubby stated that he would ask "what can we do to help" but that "he wasn't going to change what he's doing, or ask the boys to change so what good is it to discuss this..." I gotta tell ya, I'm on overload. I've had a nasty sinus infection this last week, I've had to have an echocardiogram, and an ekg, and last week was Remicade, tonight is Methotrexate, and I'm a basketcase. Why is it that he can't understand that even if they all worked out starting at the same time-- and just a hour or two was spent in that energy- (I did mention this) that it would help me cope with all the energy they bring in. I also explained that I totally

understand that both boys will be leaving home for their careers in just a couple of months time- and that I understand how important this time is for him, as well as for me. I love the guys exuberance. I wish I had a small amount of it. I know that my heart is really going to miss it when they are gone. I know is going to be very lonely-- not only is his son moving on-- but once again, the reality of what his wife can't do is going to be in our faces-- again. This morning I honestly felt like and thought- consciously thought, if I could let myself pass away- it'd be ok. I know it's the meds- and part of my experience lately has been waking up to the thought of screaming out loud-- feeling like my body has been invaded by who knows what. It is so very scary-- it's like a full blown panic attack- while I'm asleep. Is it what the sarc is doing to my

brain, is it the side effect of the medications? Is it that my subconscious (sp) really wants me to stop putting these meds in my body, or have I been abducted. I know that in a Dream Analysis that this is that place of feeling so out of control, and so I want to hide. Tonight I don't have the answers, and that too is hard. Thanks for letting me vent, love to all, Tracie NS Co-owner/moderatorStart the year off right. Easy ways to stay in shape in the new year.

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January 19, 2008

Tracie, it is hard dealing with family that are demanding that you keep up, when you can't.. It's very hurtful, its almost like they believe you're making all this up.. You and Dave have an awesome life together.. He sounds like 100% Alpha male..lol but the Bioniac woman is sick..It gets tiring also to keep going over the same issues over and over again.. Yes, you have a good few days on your vacation.. but he should know by now that when we over do it, we end up being really sick after.. Hang in there my friend..I don't have to deal with a hubby pushing me all the time, thank goodness.. the people that I call parents push the heck out of me sometimes.. and just listening to them makes me ill..Love them, but can't handle it..

Hugs,

talking to family

This is obviously a major challenge for me, the issue of explaining to the family what is going on so that they can choose to be part of my healing team- or not. Last week my husband and I spent a wonderful week at the coast. For the first time in months, I got up at the same time he did, and I went to sleep at the same time he did. My "normal" pattern has been to stay up a couple of hours after he's gone to bed so that I can turn my brain off so that I can sleep.

Since we've been home, every night is - as usual- a time for Dave and our son to do their workouts. We have a full Nautilus weight system, a treadmill and exercise bike. My son's best friend, a wonderful kid that has been a part of our life and family for the last 15 yrs, also comes over to work out.

The challenge is that likes to have dinner, then work out. The boys want to work out, then eat. And no one starts at the same time-- it's a 3 to 4 hour process. Someone will be on the weights, someone on the treadmill or bike, and lots--LOTS of testosterone.

My son also purchased a new Play station with an electric guitar, and part of the "fun" is to hook it up to the tv in the living room-- and while waiting for the equipment to come available they all try to learn to play the guitar.

The other component is that the exercise equipment is in the laundry room, which serves as my office also--so my computer is in there-- and unaccessible while they work out.

So-- I am run out of my living room, my office, and end up in my bedroom. Because of the neuropathy, reading a book lying down is hell on the hands and arms.

Now-- and I had a talk tonight over dinner-- and he asked what was up-- while gone, I could operate on the same schedule he's on. So I explained that with all the energy, the noise of weights being lifted and slammed back down on the bars, the guitar, the challenges of who's going to lift more, or do more crunches on the exercise ball (which is also in the living room, since the laundry room is not that big) and the raw energy of 24 yo boys, and one man that wants to be in full energy match with them-- I'm finding that I go into sensation overload.

It makes it so that I let them go to bed, and I sit here and play Scrabble or Mahjong or read-- in the quiet of the night.

Hubby stated that he would ask "what can we do to help" but that "he wasn't going to change what he's doing, or ask the boys to change so what good is it to discuss this..."

I gotta tell ya, I'm on overload. I've had a nasty sinus infection this last week, I've had to have an echocardiogram, and an ekg, and last week was Remicade, tonight is Methotrexate, and I'm a basketcase.

Why is it that he can't understand that even if they all worked out starting at the same time-- and just a hour or two was spent in that energy- (I did mention this) that it would help me cope with all the energy they bring in.

I also explained that I totally understand that both boys will be leaving home for their careers in just a couple of months time- and that I understand how important this time is for him, as well as for me. I love the guys exuberance. I wish I had a small amount of it. I know that my heart is really going to miss it when they are gone. I know is going to be very lonely-- not only is his son moving on-- but once again, the reality of what his wife can't do is going to be in our faces-- again.

This morning I honestly felt like and thought- consciously thought, if I could let myself pass away- it'd be ok.

I know it's the meds- and part of my experience lately has been waking up to the thought of screaming out loud-- feeling like my body has been invaded by who knows what. It is so very scary-- it's like a full blown panic attack- while I'm asleep. Is it what the sarc is doing to my brain, is it the side effect of the medications? Is it that my subconscious (sp) really wants me to stop putting these meds in my body, or have I been abducted.

I know that in a Dream Analysis that this is that place of feeling so out of control, and so I want to hide.

Tonight I don't have the answers, and that too is hard.

Thanks for letting me vent,

love to all,

Tracie

NS Co-owner/moderator

Start the year off right. Easy ways to stay in shape in the new year.

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January 19, 2008

Tracie

I am going through much of the same as you are. My other half is great most of the time but has his "I don't understand you" days.

My sister and mother, wonderful that they are, push so hard on me they are driving me into seclusion. They want the old Jackie back and think If I try harder she will come back. I am trying hard but as like you I tire so easily. I would not wish this on anyone but I do wish they had to walk a block in my shoes. Just go through it all for a day. I try to talk to them but I get the same thing. "All You need, Jackie is your independence back and you will be fine." The wheel chair bothers them a lot and having someone else drive me around just sets them on edge. I had a wonderful idea, I sent them your email and the respond from . Wow I couldn't have put it better if I tried. I hope they understand just a little. I don't have this trouble with my children but heck they only have been around for 37 years where the others have been around for 57. LOL

I pray for you and all of us that friends and family will understand our pain and disabilities. And I thank you for such an eloquent letter. It says it all so well.

God be with you and take away some of your pain, both mental and physical.

With much love Jackie