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Terrible Leg and Hip Pain


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#1 Peggy

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Posted 02 September 2008 - 06:13 AM

I had such grand ideas of all of the things I was going to get done today. I wanted to start getting out my fall decorations and re-organize my closets to put my sweatshirts out, but low and behold this disease has other plans for me. I have such terrible leg and hip pain today that it's even painful to walk. I could just cry. I'm wearing the pain patch and have even taken pain pills and it still hurts so bad. I also found out from another thread that this port that I have I'm supposed to be having it flushed every month. Well no one told me that and I haven't used it until June so I made an appointment for tomorrow to get it done. That's why this board is so great with all of the information a person learns, never mind the love and support.

Thanks for listening.

Peggy

#2 Shelley Ensz

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Posted 02 September 2008 - 07:16 AM

Hi Peggy,

I'm sorry your great plans for the day fell through due to pain.

I put "Rest, Refresh, Relax" at the top of my To Do list every day. Then when I can't do what I want (which is very often), I can at least accomplish the most important things. After all, the 3 R's are more important than anything else when dealing with chronic illness...and certainly far more important than getting out seasonal decorations or cleaning closets.

In fact, I discarded the entire category of "seasonal decorations" many years ago. They are an entirely optional thing. You'd be shocked to find how many people have opted out of the seasons, some entirely and some with just one or two readily available token items. Sometimes I'll put out a door-hanging, if I'm in the mood and if it's no bother; and sometimes I'll make a seasonal decoration with our granddaughter, if we're both in the mood. But otherwise, why, I can even skip over major holidays with no guilt at all!

However, I've heard some authorities say that holding onto traditions is very important for people who are ill and that it should be the last thing to go. Whereas, for me, I found they should be among the first things to go -- in fact anything where experts are "shoulding" people with chronic illness is suspect to me! -- so there's a wide scattering of opinion and you can use some of your Rest, Refresh and Relax time to consider the topic in general, and discover whether you find Seasonal Things to be Stressful or Joyful and reprioritize them as you wish.

I had a boss once who had a handwritten sign right behind his desk which read "No oughta's, gotta's, coulda's, shoulda's, gee-I-wish-I-woulda's!"

It made it nearly impossible for me to say anything at all to him (certainly no excuses!)...and I figure there should be no excuse at all for not resting, refreshing and relaxing when we are ill. Because we have an obligation to feel as well as we can, under the circumstances.
Warm Hugs,

Shelley Ensz
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#3 Purr

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Posted 02 September 2008 - 08:11 AM

Shelly,

I'm with you on seasonal decorations. There is only 1 time a year that I decorate my house and that's from the 4th Thursday of November to the 1st of January the next year. I've been known to put a fall wreath on my door, but that's as far as it goes.

Peggy,

I'm so sorry you're in such pain :( . But just remember that your grand ideas will still be there to do when you feel better :) .

Take it easy for now.
Christy
Love makes the world go around!

#4 Peggy

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Posted 02 September 2008 - 09:43 AM

You know I would love to be able to meet you in person some day. Your posts are always the most intelligent, insightful, logical, true and caring! I thank you for your reply and you are right................I should quit trying to do everything I used to do and quit beating myself up about it. I was always "super mom and super woman" and did everything and was a perfectionist too. Now I can't do that and I just have to accept it. So I will take your advice and not beat myself up if I don't take out all of my fall totes and spend an entire day decorating my entire house. Because then I will also have to spend another entire day down the road taking it all down.

I thank you from the bottom of my heart for taking the time to give me such good advice. You are great at what you do and I am truly lucky to have you to be there.

Thanks again and warm hugs,

Peggy

#5 Sweet

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Posted 02 September 2008 - 01:02 PM

Awwwwwww Peggy I'm sorry you are having an increased pain day. Just rest and perhaps tomorrow will be another day!

I too had a list today. I finally realized I just wasn't myself today and to bag it. I'll try again tomorrow.
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#6 Sweet

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Posted 02 September 2008 - 01:03 PM

Oh Yes Shelly is so right! The Rest Refresh and Relax was the ONLY thing that I got to check off my list today!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 smac0719

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Posted 02 September 2008 - 01:34 PM

Peggy,

Our personalities ar very similar. I too was "super mom" and "super woman". I did any and everything. However, this disease told me otherwise and I did have to learn my limitations. As others have said, don't beat yourself up over the things you don't get done on your list. I too make a to do list with the important things on top. I review the list daily and move things of importance up until they make it to the top of the list and get done. If they don't move up, then I rethink their purpose for being on my list and many get deleted all together. The few that remain go on my "on a really good day" list.

I am so sorry that you are in so much pain and discomfort. I truly hope that you find some relief soon.
I may have Scleroderma, but Scleroderma doesn't have me!

#8 bookworm

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Posted 02 September 2008 - 06:18 PM

Peggy,
The very same thing happened to me about a week ago. I had all sorts of plans and had felt wonderful the day before. But, when I got up, I ached all over, but my hands were the worst! I could hardly bend a finger and had trouble getting out of bed because the sheets were so heavy!
I also felt like crying, but talked myself out of feeling guilty. I guess you could say that this has done one good thing for me and that is this: I have learned to make good use of my time when I am feeling good. I am a terrible procrastinator, but I am beginning to get better about that! I just know that if I put something off until the next day, I may be in bed that day!
As for seasonal decorating, I've never done a lot of that anyway. The only holiday that really brings on the guilt is in December! My mother had this celebration at her house and cooked the turkey and dressing until she was about 75, and I haven't done it for several years and I am not that old. I am thinking of doing it this year, but have some doubts! My daughters are so willing to do it, but it just seems as if it should be here at my house.

Mary in Texas


#9 canon

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Posted 05 September 2008 - 03:13 PM

Peggy,

Hope you are feeling better and sorry to hear you were/are having a bad time. I hear you and wish you well always.

Judy
A happy heart is good medicine.

#10 smurfette

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Posted 06 September 2008 - 05:25 PM

Peggy,

Take care of yourself first and foremost! Everything else can and must wait! I have to admit I have a cleaning lady every week and what she doesn't do does not get done. I will not reflect on my life down the road and say "I really wish I had cleaned more!".

Same goes for decorations - I will share with you a secret - it is just not necessary for me to decorate my home. Holidays would come and go some years and if the kids were too busy some traditions were not observed. Now that the kids don't live with us, we just don't bother. Now that I have cats with long hair candles are out of the question.

Cooking?! Hah! We have a microwave and a 20 cubic foot freezer. My husband has healthy home cooked meals - found in the freezer section of my supermarket, etc. He even gets to shop for his own meals, sometimes by himself if I am not up to it. Or I make a homemade reservation.

I do not do what is on my list a lot. If I do not feel well - tomorrow is another day and I chip away at it as I can and some stuff just becomes moot. Some stuff seems really important when it goes on the list and then I get realistic. It is just not important to be supermon (kids are 19 and 24 but high maintenance) especially if they want me around for the long haul. They are leaning to hear the words "I am not up to it today". I am learning to say it without feeling guilty. They ask without even thinking sometimes. They are so used to me doing everything. Time to let them grow up and have to wipe their own noses, etc.

In a nutshell, I am learning I do not have to be all things to all men, children and animals. First I have to be true to me and take care of me - just like they tell you on the airplane regarding the oxygen mask. Put it on your face first - well in this case - take care of you first and don't stress about the stuff that you really know deep down does not matter in the grand scheme of things.
Smurfette

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#11 Peggy

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Posted 07 September 2008 - 07:00 AM

Well I have decided that my fall decorating this year will be the picture window! I will look out it and see the pretty oranges, yellows and reds and forget about decorating my entire house. Thanks for the advice and I will quit setting myself up for guilt and disappointment and try to become more realistic. Things have to change according to what I'm able to do and to stop beating myself up about it.

Thanks and warm hugs,

Peggy

#12 jefa

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Posted 07 September 2008 - 07:32 AM

I have a 'calendar' window which opens onto a wooded area. I leave the curtains even when it is cold as the changing views are so striking. Now, if I could just get somebody to wash it for me... :D
Warm wishes,
Jefa

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