Posted on March 8, 2017
Posted on March 8, 2017Update from Carolyn
Yesterday I announced on Twitter that I’m going home this coming Sunday, March 12th, after almost eleven months away. When I get there, I plan to get into bed, pull the covers up to my chin, clamp my lips and eyes shut while my big boxer dog spends about fifteen minutes licking my face. Then I’ll chase him off, hose down with some powerful chemicals, and then…omg, what will I do then?
There’s better, as in “recovered” and there’s better, as in “improved.” I’m in the second category, improved enough to just barely function. If I can’t actually get out of the house in case of fire if my husband is buying groceries or meds, I can at least get the wheelchair to the front door and open it (I hope, haha. Getting to the wheelchair is still very hard) and sit there until help comes. I can’t get to the bathroom or the kitchen. An awful lot is ahead of me. But I think I’m going to beat a lot of expectations. If I injure myself or even fall, I’m screwed. At home I’ll have no fallback, no sling to carry me if I injure my ankle or feet, which I’ve done many times during this. So, yes, all sorts of things can go wrong.
Of course, the wrongest of the things (to use Twitter lingo) will be that my husband is exhausted by his leukemia and by the treatments he gets for it. I’m going to be writing about that on my blog. Y’all are going to be mighty pissed when you find out what most likely caused his leukemia. I will also be writing soon about coping methods used by people in our web community who are enduring very difficult physical things. As per usual, I’ve gotten replies from men and virtually nothing from women. Don’t even get me started. If you know a woman who can just list for me the self-talk she uses, her tips and techniques to get through the day, what helps her keep going, PLEASE have her contact me as soon as possible. I can even make sure she stays anonymous in the post. I’m @carywood on Twitter. I hope to do this soon.
I’ll also be posting all the sorts of things I love to write about or that I find important. Humor pieces, commentary about life, pain, art—you name it. Eventually I hope to do some real life work. Someone has already approached me about a future project and it’s the kind of work that I love.
I think I’ve been a bit too open here on YouCaring. Openness and transparency (the real kind, not the corporate pretend kind) are so important to me, but these are dangerous times and I’ll likely delete my updates after a while. My blog will be the place to find updates about me or to help in any way. But, I’d like to emphasize that I have a wish list that includes very inexpensive things, and free things, as well.
One person has asked me twice now what they can do to help. I’ve answered by saying that I have a long list of things people can do to help and that it includes things that don’t cost a penny. Did they do any of them? No, not one. Oh, well. I am really pleased if someone reads what I write or cheers me on in some way, and if they aren’t interested, it’s fine if they completely ignore me. But if my experience has been that some people ask how they can help and then don’t follow through at all, then you can be sure that this version of an empty promise has happened countless times to people in even worse situations than mine. God, I hope I haven’t done that to anyone. I probably have—it’s so easy to get swept up in the urgent and forget that every single minute has a sense of urgency for people who are drowning.
Now, more than ever, we have to help each other be the kind of people who follow through, who fill in the gaps. We know the government won’t be doing it. What kind of people do we want to be? Today is the day to be that kind of person. I keep harping on it, I know, but incredible need surrounds all of us. My writing isn’t just about me. It’s a portrait of one person who represents millions more who are the walking wounded or the no-longer-able-to-walk wounded. I asked for local help on my blog, even in the form of a favor done once a year, and not one person responded. That’s depressing. It may just be that they didn’t notice. Anyway, so many people here went so far beyond any expectation that I could have that I’m still astonished.
I even had a group praying for me to an extent that took my breath away—and these are almost all web people who barely knew who I was until this happened. And, no, they aren’t Trump supporters. Let’s not stereotype, okay? It’s so limiting. I’m so grateful to them. Imagine listening on a daily basis to an endless list of awful things that have happened to me for the past few months. You should thank them for diverting me from Twitter and taking on the burden, haha!
So, I have to go home. I have a husband and a dog. We need to be together. The bills are astronomical here, so staying isn’t sustainable. I’m through with that. I’ve gotten to the point in PT where it’s just as effective to do it at home, though I’ll deeply mourn the loss of the World’s Best Physical Therapist. Of course I’ll still do physical therapy on my own, and may even have a few visits left that are covered, but with a different PT.
The discouragers are still there to NOT cheer me on. I was told today that at home I could fall, and that she’s seen it happen and it would be “very bad.” Thanks for that. What good do those words do me? I already know that this is risky, but I have to go home. As I said on Twitter, regardless of my miseries, I’m going to go home on Sunday. I will need more help than now. It will be hard. But it will be home.
Posted on November 12, 2016
Posted on November 12, 2016What's Coming Up (a long overdue update from Carolyn)
Yes, it’s true. I’m still not home. I left home April 23rd and I believe I will still be gone Christmas. Maybe longer if I need surgery—or surgeries.
My husband tries to stop by just before dinner and we talk and watch a TV show together. He’s exhausted from his treatments and his cancer. Our dog used to sleep near me when I was at home. Ever since April 23rd, he sleeps on an ottoman near the front door. He’s on the lookout, waiting for me to come home. It’s almost impossible to write that sentence without crying. I’m afraid that he thinks I abandoned him, even though he’s been here about four times now. But that’s four times in seven months. Seven months! What has happened to us?
This catastrophe would be so different if it hadn’t hit both of us at the same time. If my husband didn’t have cancer (he’s NOT in remission), I would still hate every moment away from home, but I wouldn’t hear the tick tick tick of the clock, counting down his life. I’d know that eventually I’d get home and all would be well. But it won’t be well. And he can’t take care of me as much as I need, devoted as he is. I won’t be able to walk around. What happens then?
On the other hand, if I could walk and was “only” facing his illness, I’d at least know, in my profound grief, that I could go out and make new friends, go to events, have people over and cook, go to the beautiful office that he built, and be able to take care of myself. But, sadly, there is nothing good about this at all.
I’ve decided to write a blog about the experiences I have, but go beyond this situation and tell stories: humor, work, fascinating people I know, and all the rest. Dan Mall is designing it. It will be announced in the next few weeks on Twitter. You can find me there.
So many people have asked what they can do to help. Unfortunately, almost none of them live in Portland (or maybe we just don’t know that about each other). On the other hand, I’m privileged to have friends around the world. I feel so grateful for that. So, I’m putting a wish list on the blog and it ranges from things that cost not even a penny to things that cost more. We’ll see. Anything that assures me that as I lie here in a bed that seems a million miles from home, that I’m not alone in the world, and that I’m remembered on a daily basis by someone, somewhere.
If only I could convey to you how much I want to get home. But in-home care is extraordinarily expensive. You need to be a millionaire if it extends over much time. My bills are beyond belief now, but they are nothing compared to in-home care if you don’t have family members who can take care of you. It frustrates my husband so much that he doesn’t have a bit of energy to spare.
I’m so grateful to everyone who has given so generously here. I think of you every day when I attack my physical therapy exercises with every cell in my body. I’m the Navy Seal of lumpy, weak, rashy, bed-bound people, yelling as I strain this poor excuse for a body toward the goal of standing up, turning around, using a wheelchair again, leaning over, or opening doors in my house.
I hope I’m able to open them to let you in. Someday, soon.
Posted on July 26, 2016
Posted on July 26, 2016Have a Great Weekend! (from Carolyn)
July 24,, 2016
I’ve intertwined an entire weekend of news to try to give a picture of a morning here.
I’m letting a little more light into my room, now that I haven’t had migraines in a while. I do my physical therapy (PT) morning routine before they come to my room. I already have, after about a week of PT, a flareup of my chronic tendinitis in my left big toe and down across the top of my foot, then across my ankle. My caregiver and I have wondered if the problem with the big toe could be something else, and if so, I’d really be in trouble. Hah, as if I’m not really in trouble already. I’d worked faithfully on my exercises and with such hope only to discover in the morning that I can hardly move my left ankle. It doesn’t feel like a muscle that’s been worked hard; it feels like an injury, difficult to move and painful. I can’t lift it and it’s starting to swell. This is devastating beyond words. That was yesterday and I became chilled and couldn’t eat and fell asleep sitting up, on and off most of the day. Stress.
Why the drama?. I was discouraged the day before because I thought that the new insurance plan (I’m in a foster home, so different rules apply)—would mean that there wouldn’t be intense pressure to reach unrealistic goals. Just work as hard as you can, and they’ll give you competent, strenuous therapy until you get better.
Nope, it doesn’t work that way, or so I’ve been told. No matter how hard I work and no matter how damaged I am at the beginning, I have to reach certain goals by certain times or I won’t be covered for care anymore. Yes, you read that right. If my progress is too slow, because my condition is poor in so many ways, they stop helping me to recover. Here I am at the beginning and the low-level exercises I’m doing so diligently have already made one of my feet worse. The first goal I can think of just became impossible. I cried. Yes, yes, of course I will keep working hard—please don’t tweet me to tell me to keep trying. (Although I adore physical therapy success stories.) Remember, I want OUT OF HERE.
After a little while, if I don’t seem to be making progress, the physical therapist said, “That’s when you’ll have to really push through a lot of pain, so that you can show that you are meeting goals.” Does this make sense to any of you? Shouldn’t that sentence read, “That’s when you’ll have to really push through a lot of pain if that’s what is needed TO MAKE YOU BETTER.”
I looked online later, and unless they make a custom version, it doesn’t look to me as if the boots prescribed for me—that will stretch my Achilles tendons and calves beyond what is naturally possible—come in my measurements. What happens then? No boots, which are an integral component in my therapy? I read an article online that says that these boots don’t change contractures (my main diagnosis) more than a couple of degrees. The visiting nurse said that studies show that physical therapy is generally more effective than surgery. Conflicting information everywhere. The internet at work! Is the surgeon giving me false hope? Does he know damn well that I’ll eventually fail or need risky surgery? Am I just buying time? Or will I be able to achieve minimal function and live at home, no matter how limited? Will it be paid for by insurance or by a desperate, expensive care plan paid out-of-pocket after I’m cut off of this home health care? Did we really land on the moon, or was that a lie? I’m dizzy with the possibilities.
Let’s say the best happens and I can stand up and take a few steps in three months, which doesn’t seem likely from my current point of view. By then it will be half a year away from my husband, and time is so very precious. I saw him yesterday for only about half an hour, as he delivered things I needed and sat to have a couple of cookies with me. He was exhausted and his arms hurt more than usual. My life is bad enough, but add the time factor and the progression of his disease and my stomach is clenched. My entire being is clenched. No matter how hard you work, Carolyn, they may give up on you long before you are better enough to go home. To go home and be with him. What will I do then? I guess I will plow through any money I find, find people to move in who are just like all of you—oh, never mind, it’s all impossible. “Stop future-tripping,” my husband would say. I future-trip anyway. My God, what if I’m still here at the end of the year and it’s flu season? If the flu hit this place, my husband would not be able to visit at all. Someone, please stop my mind from overworking. I was doing so well, bringing myself back into the moment, but waking up to a setback and living with pain makes it hard not to imagine the worst.
I now have quite a few exercises to do a few times a day, and it’s great to get to work (except for the injury). In one, I put on straps and pull to stretch the back of my legs by pulling my feet toward the front of my legs. One of my hands (and the wrist) are still injured and occupational therapy isn’t approved until next week, so I have to pull as hard as I can using an injured hand. I have developed a mysterious bright red rash with small blisters on my right leg, from above my knee down to my ankle. Oh, how I’d love to post the photo I took of it. It could be the header on my Facebook page! The visiting nurse could only speculate about the cause of the rash. Hmm, that’s not quite true. She could do a swab so someone could look at it through a microscope. Oh, you silly goose! This is America! That would cost a little money or take a little time or require overcoming some other insurmountable barrier. So now we do a procedure twice a day of gently washing the skin, applying some medication probably chosen because I had some on hand, and wrapping the legs. She didn’t leave enough supplies, so we reused the gauze wrap from the night before. To. Fight. An. Infection. The used gauze. I was aghast. My husband had a fit. He said I should have called him and sent him to a store. It never occurred to me that you could walk into a store for this late on a Saturday night, or that he could go early in the morning before his medication took some of the deep, throbbing pain out of his bones. We used the one clean one tonight, and tomorrow (Sunday) I guess my husband will be shopping for what home health should have paid for and delivered. (Today I asked the nurse about more supplies, and she said, “But that would cost us money. We don’t like to spend any money we don’t have to.” Right, that’s why my insurance is absurdly high (I won’t even tell you how high)and doesn’t cover the “home” in which I live, which comes to around $8000 per month—not not to mention all my husband’s living expenses and the cost of our home and taxes. What will happen to people when disability runs out? It used to be unthinkable, even under Reagan, that both sides wouldn’t come together to keep disability (which I’m not on) going. But this past year they almost drove it into the ground.
It hurts to sit. I should be turned or given a wedge or something so that I’m not always sitting in the same position. For those of you not hip to such things, constant pressure can rapidly cause serious wounds. Bedsores. I brought it up to the visiting nurse. She said, “Well, maybe stick a pillow under one side.” When I was at home, the skin on the back of my legs felt like I was sitting on a pancake griddle. Relentless, virtually intolerable burning, from my knees up, on the back of my legs, and across my legs from side to side. Nerve pain and wounded skin, one doctor said. That’s what I was feeling every waking moment as I sat there laughing and working with many of you over the past three years or so. I’ll have to put in a call for the nurse to check me again, or perhaps have a wound nurse come. The skin looks better, but it’s only because I’m in bed 24/7. My husband has tried the recommended medication to treat his pain. His hands and face became swollen.
Both days this weekend, the two aides who are here part-time came in. They weren’t both here when we changed how I am lifted in the sling over to the commode. The one who is less experienced was the only one to see how it should be done and I am not sure he knew what he was seeing. They would lower me as I would say, “No, this isn’t right.” I’d end up in a wrong position. At one point I was landing almost flat on my back. On a commode. Yeah, that will work. Up, down. Up, down. Worse and worse.Five or six failed attempts every time I needed to “go.” I repeatedly explained the correct maneuvers. But I’ve found that patients are invisible in these situations. Finally they went for help.
Nothing like hanging way up in the air in a contraption controlled by Tweedledum and Tweedledee. (Not their real names.) They try hard, they mean well, they are kind and cheerful, but heaven help me. If I poop today (my innards recoil at the thought), they’ll be wiping me as I hang there and God only knows what misadventures await. Last time, the woman approached that task fingernails first, never quite reaching the target, as I braced myself, swaying to and fro, as the search for my body part—you know, the same damn one everyone else on earth has—went on and on. I’m a believer, as a former midwife, that the midwife or healthcare worker (yes, even doctors) is the servant of the person being treated—bringing experience, empathy, encouragement. But workers in homes are low on the totem pole of the healthcare system, and I imagine their pay is quite low. So, I have to move through my frustrations (this is a daily difficult exercise) to a place of acceptance and sympathy for their position. I hate it. I don’t feel like evolving as a human being while being skewered like a cherry tomato on a kebab headed for the grill.
After returning from the long trip to the commode (it’s three or four endless feet away), I look down at my legs. They are bruised from the heart medicine (a blood thinner) I take now, where the straps for the sling for the lift beat the hell out of me. My legs, from the knees down, are all wrapped for the flaming rash. I’ve got that area of edema above the knee that turned purple for a time in an earlier update. I have a brilliant red area that I keep forgetting to ask to have treated. Lookin’ good! How’s about a date, big fella?
Then they brought breakfast. He remembered the other heart pill this time. That was nice. Perhaps I’ll live another day to tell my tale. I’ve had the same breakfast for well over a month now, per my request. Decaf coffee. My husband brings in the ground beans, which they kindly use—otherwise I’m served Folger’s. The horror! The horror! I might die before this is all over (I doubt it—that would be too easy), but I swear I won’t go down with Folger’s in my system. A banana, Cheerios with milk, and five or six pills. Every day. Yet today they brought a tray with some atrocity formulated to make the children of the US addicted to sugar. Oh my God, I think they might have been Cocoa Puffs. Are those the little round balls that are a sort of dark golden color? What were they? Could they have peanut butter in them? I rang and said it was the wrong cereal, even though I usually try not to make a fuss. I live in a teeny, tiny world. These are Events.
After breakfast I called the pharmacy and tried to straighten out my meds, since mistakes are routinely made by the doctors. I can hardly hear the pharmacist. The guy in the next room has his TV on. He’s hard of hearing. I once turned my television on with the volume turned all the way up and I couldn’t hear what the characters were saying. He’s told daily to turn his down. It makes no difference. The Price is Right blasts through my room on weekdays. I don’t remember how the game is played, but it’s so much better than the hollow drone of the Republican National Convention that was playing for days. Ah, the soundtrack of our lives.
I turn to my coffee. By now, it is cold. The cup that holds it must have been left behind by a former resident or found at a garage sale, because we’re in Oregon. Oh, and a cheerful good morning to you, too, little cup! On the side it says, in a lovely teal, “The First Licensed Hospice in California.” Such a hopeful message for my struggle to stand up again.
I look at it and I laugh.
Names and occasional details in my updates have been changed to protect the identities of the facilities where I’ve stayed and the people who work there. If you somehow know a name, please do not reveal it to anyone.