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Post by Rennie Ellen on Dec 9, 2009 17:43:49 GMT -5
The past few days have been a bit busy for me.
I was admitted to the hospital late Saturday night with chest pain and shortness of breath. An x-ray showed fluid was building up in my lungs so they gave me Lasix in the ER. I went to the bathroom 6 times and by the time they admitted me and sent me to my hospital room, the chest pain and shortness of breath were almost gone. They kept me under observation until Monday morning, when the scales read that I'd lost 4 pounds in one day -- fluid off my lungs -- and another chest x-ray confirmed my lungs were clear. I was discharged with prescriptions for Lasix and another diuretic to take along with my Coreg and Coumadin.
I also got referrals to the Heart Failure Clinic and Cardiac Rehab. The HF Clinic will help me monitor my weight, which is how they measure if I'm retaining too much fluid. The Cardiac Rehab will help me do exercises to strengthen my heart. Medicaid won't pay for CR but the hospital has a foundation that gives grants to patients like me who need help. I was given an application. I don't know how long I'll be able to go to CR, but I hope to learn all I can in case the funding runs out and I have to do this on my own.
Yesterday the coordinator from the hospital in-home care agency came over to get paperwork filled out. I still can't believe I'm actually approved! I've been struggling with this for so long on my own. I was still ashamed at the condition of my home, but at least the coordinator got an idea of what kind of help I need. She also shared that this happens to many people who develop a life threatening illness, so I had nothing to be ashamed of. She told me if the inspector gives me a hard time about my apartment, to call and give them her phone number. Then a nurse from the agency would call her on my behalf and explain what's going on with me physically so that the inspector would understand that I'm not being "lay-zee". It's been so long since someone's had my back in my efforts to declutter and organize.
Which brings me to today. My aide, who was filling in, came at 10:30 AM. After filling out her paperwork, we decided to attack the "BEDROOM OF DOOM"! I got my box of trash bags and she folded clothes (which were clean) and put them in the bags while I picked up trash and put away things while sitting on the floor. I decided to do an emergency "stash and dash" in the bedroom closet, then after the inspection, my aide and I could do a bag a day. We worked hard for about an hour and a half, putting away three bags of clothes into the closet. When we stopped and looked around, the transformation was amazing! It's a long way from finished, but at least it now looks like a bedroom instead of a black hole. I can actually see my carpet! I can actually play my CD player in my bedroom! And after Febreezing my mattress and faux fur blanket and putting on a sheet, I can actually sleep in my bed tonight for the first time in over a year!
This was the best Christmas present I ever had. My bedroom is mine again!
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Post by CourageouslyLion SeeksSerenity on Dec 9, 2009 17:47:37 GMT -5
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RENNIE ....
First of all, glad your health scare was appropriately helped by the hospital and i do hope you get that therapy.
As for your home ....
I am so THRILLED for you ...
Tears of joy.
Wow wow wow wow wow!
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Post by lizzie on Dec 9, 2009 18:56:38 GMT -5
Well you have had a lot going on! I want to send my best wishes for your ongoing health, and HUGE congratulations for the rediscovered bedroom! How lovely to be in your own bed with your furry blankie and listening to music and to be able to look around and feel impressed and satisfied... and YOU did it!!
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Post by kadymae on Dec 9, 2009 20:18:03 GMT -5
MADE. OF.WIN.
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Post by houseworkhater on Dec 10, 2009 0:29:40 GMT -5
You cannot possibly know how happy I am to read this. Merry Christmas, Rennie!
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Post by still on Dec 10, 2009 1:58:00 GMT -5
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Post by notsomessyshell on Dec 10, 2009 2:48:56 GMT -5
Rennie you brought tears to my eyes. How wonderful to be in your own bed again! Congrats!
Please make sure to take the Lasix and keep the fluid off you. Remember we worry about you.
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Post by shopgirl on Dec 10, 2009 2:51:13 GMT -5
Oh Rennie Ellen, that IS a great Christmas present indeed. I am overjoyed for you and all you accomplished. Reading your post, I can hear the happiness in your heart!
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Post by lettinggo on Dec 10, 2009 4:26:00 GMT -5
Rennie Ellen, that is so wonderful. If you know my story at all, you know that "a bag of trash a day" was the method I used, and it did take time, but I was able to keep doing it, because I never overwhelmed myself! And it got my house clean.
I sometimes think that the cruelest thing we do to ourselves, almost, is making it so we can't even have our OWN BEDS. We DO deserve to sleep in our OWN BEDS. So YAY FOR YOU!!!
And I am glad you are feeling better. Do you have CHF? That must be SO exhausting.
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Post by howardsgirlfriend on Dec 10, 2009 11:13:04 GMT -5
I'm so proud of you!
You cleaned your room, and worked well with someone willing and able to help you (I suspect this is difficult for many of us.)
How serendipitous that you were approved for in-home care just BEFORE you had to go to the ER??
Do savor the acceptance from being told how common it is for people with illnesses to have squalor problems. You showed her your squalor, and she accepted your present state, and went about her business.
You might want to ponder what your aide could help with next--maybe do that task you can't do, or can't do by yourself.
FYI: that 4lb weight loss equals about a half-gallon of fluid.
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Post by Rennie Ellen on Dec 10, 2009 11:28:30 GMT -5
lettinggo,Rennie Ellen, that is so wonderful. If you know my story at all, you know that "a bag of trash a day" was the method I used, and it did take time, but I was able to keep doing it, because I never overwhelmed myself! And it got my house clean. I sometimes think that the cruelest thing we do to ourselves, almost, is making it so we can't even have our OWN BEDS. We DO deserve to sleep in our OWN BEDS. So YAY FOR YOU!!! And I am glad you are feeling better. Do you have CHF? That must be SO exhausting. I have chemotherapy related cardiomyopathy (CRC). I also have mitral valve damage from the chemo. From the end of December 1998 to the first week of May 1999, I was treated for my non-hodgkins lymphoma. They did warn me that it could be toxic to my heart, but when you have a 12 cm. inoperable tumor behind your left lung, there are no other options.
I had hoped that if the heart damage occurred, I'd be in my 80's and I wouldn't care -- NOT when I was 48 and still had a few years of living left. Now it's made every day a challenge and a struggle. I never get a day off from it. Even if I want to do something fun, I have to plan it well in advance and give myself several days before and after to recover. I know, I know, I shouldn't complain....but I do get tired of what my life has now become.
If I had gotten help the first time I requested in-home care several months ago, I wouldn't have had to do the emergency "stash and dash" now. When I got diagnosed with CRC last year, I had started to organize my bedroom closet. But as I struggled with my health issues, everything just continued to sit there -- until yesterday. It took my aide and I (she did all the hard work) AN HOUR AND A HALF to get those clothes stashed and dashed -- it had been sitting there for OVER A YEAR! I knew it needed to be done, but was physically unable to do it. And then to have inspectors and others think I'm being "lay-zee" -- that's what I find so frustrating.
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Post by Celeste on Dec 10, 2009 14:17:09 GMT -5
If I had gotten help the first time I requested in-home care several months ago, I wouldn't have had to do the emergency "stash and dash" now. When I got diagnosed with CRC last year, I had started to organize my bedroom closet. But as I struggled with my health issues, everything just continued to sit there -- until yesterday. It took my aide and I (she did all the hard work) AN HOUR AND A HALF to get those clothes stashed and dashed -- it had been sitting there for OVER A YEAR! I knew it needed to be done, but was physically unable to do it. And then to have inspectors and others think I'm being "lay-zee" -- that's what I find so frustrating. With the extra help you'll be getting, I doubt you will ever have an inspection that will go against you. You will never hear the " ***" accusation again, which makes the angry side of me even madder. I'd LOVE it if the inspectors could get chewed out by the in-home coordinator on your behalf! I'm afraid I'd make a point of telling future inspectors that upkeep is only possible with able-bodied help around. On the other hand, the joy that you are FINALLY getting the help you need made my week. Thank goodnees, Rennie! I can't tell you how delighted I am.
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Post by Rennie Ellen on Dec 10, 2009 15:23:43 GMT -5
howardsgirlfriend,Do savor the acceptance from being told how common it is for people with illnesses to have squalor problems. You showed her your squalor, and she accepted your present state, and went about her business. You might want to ponder what your aide could help with next--maybe do that task you can't do, or can't do by yourself. FYI: that 4lb weight loss equals about a half-gallon of fluid. I hope I don't ruffle any feathers here, but I have a problem with the word "squalor" being used to describe my clutter.
Yes, I know that's the name of the board. But my perception of "squalor" is what you'd see on shows like "How Clean Is Your House?" where there is animal poo, mold and rotting food everywhere. My "clutter" is just clothes and junk mail, mostly unopened. I'm not saying I'm better than anyone else, so please, PLEASE don't read that into my post. If I didn't have a problem, I wouldn't be here.
I do admit since my disability has gotten worse, I have a problem with clutter and disorganization because of low energy levels. But as the nurse from the in-home care agency told me, she'd been in homes where the first thing you smell when you walk in the door is pet poo. She didn't even know I had a cat until Angel walked in the living room. So to her, having seen homes in even worse conditions than mine, my home is "cluttered" but NOT in a state of squalor. She made a few suggestions to help the junk mail clutter, like open it immediately and shred it. And in the past couple of days, I've seen a difference just by doing that. I'm getting a trash basket to put the unopened junk mail in so I can shred it at my leisure. That should keep it from piling up on the floor.
This morning I awoke with a head cold and a sore back and calves. I don't know if it was from the mattress or all the work I did yesterday (which really wasn't much, my aide did all the hard stuff). So I'm taking it a bit easy today. And my new aide is coming tomorrow so we can work on the bedroom some more.
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Post by shopgirl on Dec 10, 2009 15:58:43 GMT -5
This is all very great, Rennie Ellen. I'm especially proud of you for taking such excellent care of your kitty. Rest up today, and know that your battle will be much easier from this point forward. Your in-home helper sounds like a terrific person, and she's on your side. Congratulations, and enjoy your new space!
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Post by Peach on Dec 10, 2009 16:05:11 GMT -5
I am so happy for you Rennie!! It's wonderful when the powers-that-be "approve" us for something that most people take for granted. You deserve it. Let the aide do the lifting and strenuous work. That's her/his job and they're getting paid to help you.
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