Saturday, January 21, 2017

Life can be tough even when you don't have RA

My wife has been struggling big-time since around the second week of December. It started out with bad knee that wouldn't heal, then, likely because she was walking funny to keep her knee from hurting, her left hip began hurting like crazy. She became unable to walk more than a few steps. She's now using a desk chair to move from the living room to the bathroom and back again. Complicating matters is that she went from an already staggering 361 pounds to 381 pounds from November to the second week of January.
I am not a retired person. Thankfully, our daughter has been able to help while I've been at work, but my days off, and after work, are filled with washing the extra laundry that is caused by the diarrhea that's either happening because of extra-strength medications she's taking, or by something else--and the constant needs that must be met, like serving her food, water, etc..
And all that scares me. She's currently taking four ibuprofen every six hours, and two arthritis strength 650 milligram acetaminophen on the same schedule, and prednisone on top of that. The acetaminophen, according to the label, can only be taken every eight hours for a total of six in a 24 hour period. She was in the hospital last week and they told her she could take them every six hours, so she's sticking to that schedule. These are the pills that have strict warnings about impending liver damage if you exceed the dosage. The thing is, it has been the only thing to lessen her pain at all.
As for doctor's visits for help, she was in her doctor's office for that very thing last Wednesday when they checked her oxygen level and it was so worrisome, they sent her over to the ER. She ended up being admitted, then tested for all things related to her lungs, and nothing checked regarding the hip pain. Although deep-vein thrombosis was checked, no x-rays or MRIs were done, because they were more worried about possible blood clots in her lungs than anything else.
We called yesterday and told the doctor that the prednisone didn't seem to be working, and he upped the dosage, the first one being taken this morning, but this day has been one of her worst for pain.
I have been pretty much glued to the house in order to take care of her. When I went to the store this morning to pick up some Immodium AD and some other needs, by the time I got back, she'd had another diarrhea attack and was a mess. Thankfully, my daughter was there.
My plans last week on my day off (which was Thursday) had been to pick up some new ski boots, get a haircut, and go to the gym. Instead I spent the day at the hospital. I finally got my haircut, but the ski boots remain un-bought and this is the last day off I had open to go and get them prior to my ski day, for which the nonrefundable ticket has been purchased for the 30th. If Ann doesn't improve, I won't be going skiing either. I know that sounds selfish, but those of us who are caregivers definitely need our breaks. My personal outlook right now is not great. I'm tired, frustrated, grumpy, and lonely. I'm worried that I won't be able to regain my own health because I won't be able to get to the gym, and if so, how on earth am I supposed to take care of her and all the other things on my plate? I'm wondering how long this is going to last, how to handle things, if she's ever going to recover, what to do next, etc.
Yeah, I'm being a baby. I admit it. But's it's doggone hard doing this gig. Some people ask God "why me?" when hardships come, but I have found out that that's the question I must ask when something good happens too. "Why me? What did I do to deserve this joy in my life?" And honestly speaking, I don't think I've done much to deserve any of the joys I've had, and likely done much more to deserve my trials. I think I need God to help both Ann and me through this one.

6 comments:

  1. you are not alone..grecia amann

    ps 100% Pure pumkin ..good tip from me

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    1. Thanks, Grecia! You'll have to inform me further about the pumpkin.

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  2. Shane I am sorry you and Ann are having such a struggle. I can't even imagine the pain, frustration, loss of control, and responsibility this is to deal with. I am praying for you both and will add your daughter-- that she stays healthy, is blessed for her labor of love and has the time she needs to take care of her life as well.

    I know that God doesn't always change our circumstances ... sometimes he changes us through the circumstances. When we are at our weakest He gives us His strength--- He holds us together so we don't fall apart... and gives us enough to get through another day!

    The book of Isaiah says that those who depend on Him will walk and not be tired, run and not grow weary and they will rise up and soar above their trials like eagles. I am praying that for you. God sees all that you are doing for Ann and how you are honoring your promise to care for her--- you have the servant heart of Jesus when you sacrifice your needs for her!

    When things are at their worst I find some good worship music (Klove radio or stream on your phone.... Selah or Casting Crowns or Elevation) ... keep reading Psalms and let God fill up the emptiness and do what He says He will do---give you joy, strength and peace! He will also give you rest! I continue to pray for breakthrough for Ann with the RA.

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    1. Thanks, Cheryl. I know it's a road both Ann and I need to go down for some reason. I appreciate your prayers and counsel.

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  3. I am totally with you on every word of this entry; I have been down these same roads.

    Critical to surviving and thriving: 1. Patient advocacy for your wife. Learn all you can and don't let doctors ignore you. 2. Find a way for her to lose some weight. I know that's ever harder than it sounds, but her whole health picture hinges on it. 3. Find a way to take care of yourself. If you go down, she goes down.

    Sorry if I sound preachy, but I know that this is a tough fight. I also know it's one we can win.

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    1. Thank you, Richard. I know a bit about yours and your wife's challenges. I also thank you for your advice. I know we can win. Keep fighting!

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