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PCH KITCHEN ..... March 17 ... does your family understand your chronic illness?

Last post Mar 18, 2005 11:36 PM by PRCA . 31 replies.


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  • RE: PCH KITCHEN ..... March 17 ... does your family understand your chronic illness?
    I suffer from Endometriosis, which is not only debilitating, but invisible. It's different when you have something that can be seen or even more so, understood. But many people do not understand Endo. And it will be chronic until I go through menopause, so being 41 that may not happen for quite some time.

    I had surgery for it a year ago and it is better now, but there are months where I have pain and discomfort every day. Nothing that a good dose of ibuprofen won't help, but still enough to make me irritable. Thankfully, my husband is SO compassionate and understanding about it. Often the pain interfers with relations, so he is always careful to ask if I am doing ok, and he is fine if we have to halt our activities. I am very fortunate in that regard. Often I am in such a funk when I have a period that I really don't want to be around anyone, and you know that is impossible. But extended family understands it to a certain extent, one SIL in particular is wonderfully supportive. I almost wish for menopause so there can be an end to it but I know that is not the solution. I just pray a lot for God's healing and grace. Sometimes it is all I can do.
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  • RE: PCH KITCHEN ..... March 17 ... does your family understand your chronic illness?
    Good morning everyone. Glad to be back. Gone for a few days and noticed some new names....WELCOME!

    I'm very fortunate I have a very supportive DH...sometimes to the point he "hovers". He knows my limits and will put a stop to it at once. I the thing I wish is I had more energy so when my neice and nephew call to come over I can say yes in a heartbeat and to be able to actually play with them like basketball or just run around in the yard with them. They're getting more and more active and I'm getting more and more slower. Got home late yesterday from the hospital and now have a visiting nurse that will come 2x week, I'm on PCA pump that put pain med in me constantly. It didn't work in the hospital so why do they think it will work here? It had something to do with the insurance company. They thiink it would be cheaper to drive a pump up from Indy and a nurse that lives 40 min. from here late at nite than to just give me a vial and I take WHEN I NEED IT! My Dr. was so mad. HE was in my room with the nurses just cussing up and down a storm (it's funny cause he's korean and hard enoug to understand him) So now i'm in a daze but not a whole lot of pain relief. I know there are a few Dr.s that ruined it for everyone else but I just don't see insurance companies dictating my Dr.s orders, telling me when I'm well or what meds I can or can't have. Ok, I'll stop there....yes, I have serious issues with insurance companies right now. Foggy brain setting in so I better get off here before I really put my foot in my mouth. Be back later if I get a clear moment. Hope everyone is doing well. Goin to try to catch up on what I've missed. Hope the sun is shining in your neck of the woods and has a great apin free day. (((hugs))) to all,

    d.
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  • RE: PCH KITCHEN ..... March 17 ... does your family understand your chronic illness?
    Hugs and prayers to all in this room today. I do not think that people who lack a personal relationship with chronic illness can truly understand the battle, much less the war of it. Perhaps sometimes it is better for the sufferer to question their ability as well as to have acceptance...it keeps us real and honest and of course striving. Without that striving I think we mught go into a spiral of downward motion quicker than necessary...or worse...we may be discounted as to what we can do. I have an inner ear disorder that came out of an immune condition and runs rampant over all I do. The fear of what this does to me is the worst thing.
    I wish I could go out alone without fear of landing on my face not being able to get up and vomiting all over.
    I wish I could hear a normal conversation as I have gone quite deaf.
    I wish I could eat sodium without bringing on an attack.
    Now that said, I am stronger and kinder for being hedged by this illness...and my company of friends is like a bouquet of lilacs...so welcome.
    Blessings of this lovely St Patrick's Day to all...and I wish you well. Mary
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  • RE: PCH KITCHEN ..... March 17 ... does your family understand your chronic illness?
    Good morning! What a nasty dreary day! It is snowing, a very wet snow, lucky it isn't accumulating much, just making a mess. Lisa, did you wish for this? Are you getting it?

    It is great to see everyone, must say welcome to Marsha, CathyLew, Janra, Marilyn, gmansmom, Marymitten. Connie, Jenni, Deery and Granny, glad to see you also!

    Charli, thanks for the St. Pat's card! My grandfather came from Ireland and he had a wonderful Irish sense of humor.

    Go raibh tú daibhir i mí-áidh
    Agus saibhir i mbeannachtaí
    Go mall ag déanamh namhaid, go luath a déanamh carad,
    Ach saibhir nó daibhir, go mall nó go luath,
    Nach raibh ach áthas agat
    Ón lá seo amach.

    Translation:)

    May you be poor in misfortune,
    Rich in blessings,
    Slow to make enemies,
    quick to make friends,
    But rich or poor, quick or slow,
    May you know nothing but happiness
    From this day forward.

    Go mbeannai Dia duit
    (May God Bless You)

    Helen
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  • RE: PCH KITCHEN ..... March 17 ... does your family understand your chronic illness?
    Top of the morning t'ye!! Especially Jenni O'Husker...

    Briefly, I am married to my wonderful husband BECAUSE of my chronic illness! We went on 9 months of doctors rounds looking for the cause of my symptoms together when we were living (loving) together. When they said I had CFIDS/Fibromyalgia and would be sick for a long time, he said "Let's just get married now and have a honeymoon when you get better - then you will feel emotionally and financially secure" (I was then self-employed and struggling).
    What a doll!
    I have since developed other illnesses, diabetes and complications, had one small stroke (blindness in one eye)... but now only have 'flares' of the main illness. He has been most supportive and helpful.. and, yes, pretty well 'hovers' too! I think he would wrap me in bubblewrap and carry me around if he could.

    3 things to change?

    I would like NOT to take the nine different daily prescriptions - I am so afraid of side effects..

    Now that I am going to be a first time grandma, I wish my arms were stronger so that I would be able to lift and carry my little darling (I have tried with other babies but it hurts and I am afraid of dropping them like I do with other items when my muscles give up)

    I would like to be well enough to attend more social functions with DH instead of having to stay home while he goes out looking gorgeous.. I love to see his fans asking for autographs and surrounding him--makes me so proud. (AND I love to dress 'up' fancy--I do have the right clothes just not the energy).

    So nice to see the new friends here..we are very supportive and very understanding. You must feel free to come here to vent or whine whenever you feel the need. This is a safe place.

    Happy St.Patrick's Day..
    Penny






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  • RE: PCH KITCHEN ..... March 17 ... does your family understand your chronic illness?
    bumping ya all up from page 9! One appt down, one to go.*grins* Connie
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  • RE: PCH KITCHEN ..... March 17 ... does your family understand your chronic illness?
    I had a knee replacement 16 months ago and have had two revisions on the same knee since, am still in therapy, still in pain and still walking on a walker. My husband has been wonderful. Our house is trilevel and he carries things up and down for me.
    The main three things I would like to be able to do would be:
    1. Walk without the walker.
    2. Get rid of the pain
    3. Be able to do more around the house.

    There are quite a few more but these would be the main ones. Still I thank God for my blessings every day. Maureen
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  • RE: PCH KITCHEN ..... March 17 ... does your family understand your chronic illness?
    Happy St Patricks Day to Everyone. So nice to see the kitchen so busy today:) Welcome to all the newcomers.

    Lacie, it was so nice to have you posting again. Wishing you a less painful day.

    Nancy, miss you. Hope you are resting your arms.

    Charli, thank you for S P ecard:)

    Connie, what day is your eye surgery? I was thinking it was today?

    Hugs for GrannyBJ, Lisa, Marsha, CathyLew, Janra, Marilyn, Jenni, Connie, Gmansmom, lacie, Mary, Helen, Penny and virtual hugs extended for all others that drop by.
    Deery
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    As a deer longs for flowing streams, so my soul longs for you, O God. Psalm 42:1

  • RE: PCH KITCHEN ..... March 17 ... does your family understand your chronic illness?
    Yes Deery you have it right, today, this afternoon in fact is they eye appt. Already went to one dr this morning and got physical and stuff done and now the eye here in a bit, I need to get off here and get going to be honest. Have a good afternoon everyone. Connie
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  • RE: PCH KITCHEN ..... March 17 ... does your family understand your chronic illness?
    Good day all...great to see so many new faces today.

    It IS yucky here, MC, spitting snow. So you know what that means for me, yep, Fibro flare, bigtime. I have been in bed most all of the day with pain killers in my system. I finally put in a call to my gym to see if the massage therapist can fit me in and I am waiting for her to return my call.

    After much deliberation overnight---translation, time to think thru the Fibro fog, LOL----I remembered my 3 things!
    1: DH always empties the clean dishwasher for me 1st thing in the morning. Lifting the dishes up to put them away has just become too hard for my neck and shoulders.
    2: I have DH's work clothes done by the cleaners-he is a jr. exec. and needs to look the part and doing them up right way was taking up energy I didn't have and time he didn't when he tried to do them himself. All of the other of his laundry, if I don't keep a close eye on, he does himself-sneakily-to keep me from doing it.
    3: I have the cold and frozen grocery items bagged in plastic and the rest in paper so that I know what must be brought in and put away now. The rest I bring in when I can or leave it for DH when he gets in from work. The non-perishable items may sit for a few days but at least the perishables are safe-LOL.

    Of course, I have the usual things and rooms that are left by the wayside because of the Fibromyalgia. The dust bunnies have names and the doggie footprints on the floor I pretend are just part of the decor--LOL.
    If only Charli would SHARE that housekeeper......... :D
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  • RE: PCH KITCHEN ..... March 17 ... does your family understand your chronic illness?
    Lisa, what a good idea with the grocery shopping. DH washes dinner dishes and puts things away from drain pan first thing in the morning.

    Connie hope your eye surgery has gone well. Did someone drive you. Do you have recovery time before you are on computer again? This should have been asked earlier. Dah?

    We had some rain earlier. Did I already say that? Sunshine this late afternoon. Very little sleep last night. Sure hope tonight is better. Would have taken a nap but still feel wide awake. Just weary with burning eyes.
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    As a deer longs for flowing streams, so my soul longs for you, O God. Psalm 42:1

  • RE: PCH KITCHEN ..... March 17 ... does your family understand your chronic illness?
    Good night all...hope you have a good night's sleep.
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  • RE: PCH KITCHEN ..... March 17 ... does your family understand your chronic illness?
    Lisa, hope you have a restful night. So sorry you are in flare so soon after your wonderful vacation:(
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    As a deer longs for flowing streams, so my soul longs for you, O God. Psalm 42:1

  • RE: PCH KITCHEN ..... March 17 ... does your family understand your chronic illness?
    I haven't posted on here very much, but do enjoy reading as much as I have time to do.

    My DH and I just returned from 6 weeks in Mexico, caring for our very ill 28 y/o daughter. She is a pastor's wife down there and had gotten to the point where she couldn't do the everyday household chores - cooking, cleaning, laundry, shopping. etc. She was in constant pain, couldn't think straight, had no energy, couldn't sleep, etc. etc. For 10 years she has been going downhill and NO doctor was able to diagnose or help her.

    In Dec. I went to my doctor and told her the story and she suggested I read the book "Adrenal Fatigue, The 21st Century Syndrome" by Dr. James Wilson. I read the book, followed the protocol he outlines and in 2 months she is back to doing her own housework. It may be a 2-year recovery but at least she is on the road to healing.

    There is a website - www.adrenalfatigue.org. Take the questionnaire in there to see if it is something you may have.

    Blessings,

    Motherbear
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  • RE: PCH KITCHEN ..... March 17 ... does your family understand your chronic illness?
    MOTHERBEARJUDY!!! My Moms name is Judy and her natural children call her Mother Bear. Isn't that something!!!!!
    So glad you were able to find help for your DD. What a great MOM you must be!

    Well I am going to say Good Night Dear Friends. It seems like it has been a long day. Hope you all have a restful night with a sweet night of sleep.
    Hugs, Deery
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    As a deer longs for flowing streams, so my soul longs for you, O God. Psalm 42:1