INSOMNIACS place to talk in the wee hours

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited July 2015

    Mags- I am glad you went to the casino and had some fun. I am sorry about the fatigue and the tremor. It really does take a long time to feel better from all this. I think you finished treatment this past spring, correct?

    A doctor friend of mine (not on my medical team) told me that I would not really feel better until a year after I finished treatment. That turned out to be very true for me. But you have to venture out and take these little day trips, overnight adventures, etc. to figure out your new normal. Maybe that was too much for right now, maybe it will be better when you try again. I don't think it is your new hell, I just think your body is still healing.

    I have talked to many women here who have said "when am I finally going to feel better from all this crap?" It does get better one day/week/month at a time. Things slowly return, or get better. SEs ease up, or we adapt to what remains. We have to figure out what our bodies can and will do in the new normal. There are things I cannot do anymore, don't want to do either.

    Give yourself a big ole pat on the back for doing this! Proud of you for venturing out!

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  • M0mmyof3
    M0mmyof3 Member Posts: 9,696
    edited July 2015

    No house cleaning tommorrow for me. I'm done for the week.


     

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited July 2015

    Mommy-that sounds good to me. Time to par-tay!

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  • magdalene51
    magdalene51 Member Posts: 2,214
    edited July 2015

    About the tremor, it started quite a while ago and has just gotten worse and worse. I actually didn't use my arm much on the trip as I was on the turnpike the whole time and kept a pillow under my elbow the whole time, I don't think it's worse, it's just gotten to the point where it's really bugging me. I have to tuck my hand under something all the time especially if I'm trying to sleep. In addition to the shake, it also jerks from time to time, and my fingers will spasm and lock in place. Ortho says it's not trigger finger, no idea what causes it. I have a pic of that somewhere.

    image

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited July 2015

    egg prices are supposed to skyrocket because of bird flu. They had to destroy thousands of chickens and will take time to recover. Bakery prices are supposed to go up too.

    Mags,try an ortho again. I've been having weird things happen at night, pcp says its cervical nerve damage. I've had 4 fused not wanting to do this again.

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited July 2015

    Sassy- you asked me what kind of practical jokes I do. This could be one type!

    image

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2015

    Heheh

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2015

    Mags, what's your plan? 'Developed' indicates first experience? First experience, PCP in am. Not something to put off. Any increase or worsening change in symptoms go to Er or call EMS. Don't drive.  Laundry list of possibles. .

    not fair to you to do an exam this way. calling


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  • MarlanaB
    MarlanaB Member Posts: 292
    edited July 2015

    Sassy--my dad's a practical joker and usually got us kids in on it as his minions. Best one we ever did was when I was a around 14. Dad brought a weather balloon home from work and we reversed the hose on the vacuum to inflate it in the entry hallway of the house. Mom came home from a long day at the mental hospital and couldn't get the door open--every time she tried to push it open, the balloon pushed it back. It took her 4 or 5 tries before she figured something was up (not sure if she could hear us snickering on the other side of the balloon) but the jig was up when she yelled "Wayne, get this G@% d#%? door open!" Dad released the clip holding in the air which deflated the balloon pretty fast so that when mom walked in we were all still bent over with laughter. She didn't say a word to any of us for an hour and banged every pot and pan on the stove while she made dinner. But it was still hysterically funny.

    Queenie--I had a dog that was always drinking my beer out the glass or my coffee out of a mug. I have a coffee table that sits in the corner created by my sofa and love seat and if I left the room, I'd return to find him standing on the couch, slurping away at my drink. The coffee didn't bother me as much asthe beer because I so rarely drink beer that it will usually take me six months to go through a 6-pack. Every once in a while, I'd get a craving for a beer and it seemed as if the fur beast would only strike when I was down to my last beer.

    Chevy--the beer drinking dog went blind at the end of his life from an autoimmune disease that caused his corneas to turn cloudy. If I could have gotten him glasses, I would have. See, he never figured out that he was blind and still ran around full speed. I can't even count the number of times that he ran into something and knocked himself silly but he cost me a total of $1000 for suturesfrom twice splitting his head open! Not to mention the cost of the large terra cotta pot that he cracked with his noggin.

    The parkway looks good. Muffin princess' wild flowers really are just tall weeds.

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited July 2015

    Well I had 4 liters of fluid removed from my gut July 1st. Then I felt uncomfortably full and had 1 1/2 liters taken off my abdomen July 7th. Since that visit my abdomen went down and then started to blow up again getting tight, ribs hurt and making me nauseous and miserable. So I went for a paracentesis today and the ultrasound showed that there is little fluid it's all tissue and solid. Since the fluid they took out before was all filled with cancer in 16 days the cancer filled me solid? Wow. That's incredible. So with no relief coming, and I signed up for hospice and palliative care. It will be a mercifully short hospice stay couple of weeks at this rate.

    Good thing i didn't open the Ibrance it's still factory sealed in its baggy. I will send it back to specialty pharamacy if they promise not to throw it out. If they say they will pitch it in the trash then I will find somebody here who I can mail it too. I have an unopened bottle of aromasin my DH picked up at the pharmacy still sealed, when they switched me to femara which obviously isn't doing anything at all.

    Very disappointing day. Still miserable and uncomfortable and will stay that way. Hospice here we come! Hey Blondie!

    Looks like the cabin sale will go through maybe we both close at the same time. Wouldn't that be ironic! Sorry to have no good news to share but there wasn't any good news to be had.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2015

    rosie I'm soory, sucks

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  • Wren44
    Wren44 Member Posts: 8,585
    edited July 2015

    Rose, Sorry for the bad news. I hope hospice is able to get you comfortable. They put QOL first. Quite a change from the doctors who don't listen to your pain. Hugs.

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  • blondiex46
    blondiex46 Member Posts: 5,712
    edited July 2015

    Hey peeps, loving fla,yes kiddies r gone..wanta stay longer mayb i will

    Welcome bk kath

    Love reading all u say

    Pattyy now stay home, no more hospitals 4 u

    Hey sass n sppok, queenie, chevy, jazzy, good news, i know i missed some sorry

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited July 2015

    Rose- I am so sorry to hear about the news. I hope the support from Hospice can make you comfortable. Hugs sister.

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  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited July 2015

    Oh Rose, such sad and bad news...wish there was something I could do beside inteceding for you. The pharmacy won't be able to take the Ibrance back. Feeling nauseous here too. I am very sorry.

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited July 2015

    Rose,

    Arrggg, I am angry you did not get the Ibrance when you first requested it. Did they suggest, or advise you to still give it a try? Sorry, I am being nosy, but so unfair....the bs runaround. Hoping you flunk hospice & they kick you out.

    More important, I hope you have pain free days, or more comfortable days. Hugs to you & your family....

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited July 2015

    Hi Blondie, glad you got to stay......relax & enjoy yourself.

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited July 2015

    I figured that would be the case. Now I need to find someone to take 10k worth of unopened meds. What a waste. I left the house at 1030am get there at 12, get labs wait until 2pm and then they do the ultrasound and it's solid -all this firm massive bloating is solid? I mean a week ago I felt doable and in such a short time I got filled up solid- scary. No relief, an entire day spent and not one thing to show for it.. not a molecule of relief. That's when I went upstairs and switched to hospice... done. I saw the light, total clarity.

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  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited July 2015

    Hi Ms. BLONDIE. Hope you get to stay as long as you wish. Hug

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  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited July 2015

    I wonder if you are able to donate it to charity programs outside the States, perhaps Doctors Without Borders. Not sure if Sumeritan's Purse will take them. I don't understand...how could it grow that fast in 3 wks?

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  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited July 2015

    Volunteers In Medicine is located in Bend, Oregon. Here is the link:

    http://www.vim-cascades.org


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  • MarlanaB
    MarlanaB Member Posts: 292
    edited July 2015

    Roses--I don't know what to say. I'm sorry for you and your family, angry that the dikters didn't get off their asses soon enough and a whole other gamut of emotions. I hope that hospice will give you comfort. A lady on one of the other topics wrote that she didn't fear death, but that she wishes she would have a little more time. I've also read an article where the author wrote that no one with cancer ever loses their battle but they transcend it which I thought was a beautiful way to put it. So I wish you a peaceful and pain free transcendence.

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  • M0mmyof3
    M0mmyof3 Member Posts: 9,696
    edited July 2015

    Rose I'm so sorry to hear this. You and your family are in my prayers.

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited July 2015

    Rose, so sorry to hear this. Hope hospice helps you, and your family.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2015

    Rosie, I'm going to say some off the wall things. Everyone forgive me. Take the Ibrance. Lot's of thoughts why, instincts say don't say them. If it's against hospice rules, just don't tell them. They won't know without you saying something.

    I/ we want you here as much as time allows. BUT you know I worked on D&D this passed week. They're lot's of folks there that hold you dear too. I'm surmising you won't go back to D&D out of principle. Start a thread just for you. A place for people to come and say goodbye. If you need help starting a thread, I'll help. It's not a new idea. It's been done. Not often b/c the end catches so many unawares. Would you share your address, the girls name and Dh's name with someone here and a contact number.

    Bless you and the girls , and DH. Loved being with you, even though you drove me crazy sometimes. I'll always think of you when I write ---soory. A kind of special connection

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited July 2015

    Sassy if you had any idea how miserable I feel and have felt for months now - you wouldn't want to make me stay any longer then I absolutely have to. Please no one wish me a prolonged hospice stay where I get kicked out! I about fainted at the thought... ugh. Short and sweet and free at last - pray/ wish for that. I am so ready. I picked a hospice nearby that has a well established kids art therapy and grief counseling program. Now all we need to get is an interpreter and tap into the resource. I have heard very good things about this program from folks who have used it. That's all that matters. They also have in patient hospice rooms.. unless it's full then what? Off to a close hotel - Phoenix Inn is nearby and they have a pool... kids can visit and swim. Whoo hoo. I have always been a pragmatist.

    Now no more talk about this, back to banter and chatter and lively silly talk. Ok! I need diversion and goofiness and I KNOW you all can dish up that! Chevy... ??? Jazzy??? Remember death is normal and we all do it. It isn't scary and change is the way life is. Accept that and there is even less resistance and suffering. ((((Hugs)))))

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2015

    Got your back Rosevalley.

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited July 2015

    Rose- this one is for you. Your daily dose of cute.

    Cat and Baby

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  • tangandchris
    tangandchris Member Posts: 1,855
    edited July 2015

    Rose-

    My prayer for you and your family is for comfort and peace. I'm very sad to read this news ((hugs))

    sas what is D&D, not dungeons and dragons right? lol

    sorry, a little levity...but in all seriousness rose I'm so sorry and will keep your family in thoughts and prayer. I pray for your comfort and for you to get some relief from your pain. uggg I truly hate this!!!

    ((hugs))

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2015

    Rosie, got it. Shall I go tell the D&D folks to stop here.

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