Help for Healing

Bitter & Sweet, living daily with grief


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HIPPA

Privacy is great. Protecting our privacy is great. I may be missing something, but sometimes it seems to go too far. When HIPPA laws (designed to protect ME, I think) prevent me from my OWN information, that doesn’t make much sense to me.

It reminds me of the guys I know that got into a physical altercation and both ended up in the emergency room. What was the fight over? COVID restrictions and how to keep themselves safe. Ironic, right?

I’ve had my own two experiences this week. I somehow was able to get a desperately needed appointment for my client without having the four-month wait. My client knew about – and wanted- me to contact the doctor. I emailed him, which is the only way I could reach him. I knew a phone call was a pipe dream, especially because I only had 24 hours.

I called the office to make sure they asked the doctor to read it. Oh, we can’t accept any information by email. HIPPA. Can you fax it? No, I can’t fax it. I don’t have a fax machine anymore. Can I scan it for you and email it? No, nothing by email.

But the client says he is not only comfortable with the email but wants it sent. I believe it is HIS HIPPA rights that he wants to waive for a more important goal. I don’t get it.

The second incident was with me. I went to my foot doctor for post-surgery checkup. During therapy, I got an x-ray because one leg is slightly longer than another. My primary doctor had to order it because ordering a leg x-ray is out of the scope of a foot doctor. Now I thought that in and of itself was kind of dumb because my leg definitely affects my foot, but whatever.

I sent the results to my primary, to my foot doctor, and my physical therapist. (It was my therapist’s idea to begin with.) When I signed in for my appointment, I asked the receptionist for a copy of my report. Sure.

She comes back and says the printer isn’t working. Ask Kim when you go into the room. (Ok, but couldn’t you have done that? Customer service?)

I go into the room and ask Kim. Absolutely not. We didn’t order the test so we can’t give you the results. But it’s MY results. I have a right to my own records. Nope, you have to ask your primary because she ordered it. But I am the one that asked for the results to be sent to you. It’s MY HIPPA rights you are trying to protect. I am here, not at my primary’s office. She remains resolute.

I think you are wrong but ok.

I looked it up on my phone while I was waiting for the doctor. I’ll be damned. She is right. Unless my primary is DEAD, I have to get the results from her.

I’m sure I don’t know all the reasons the law is written that way. But as a consumer, it lacks common sense. Thanks for protecting me, but shouldn’t I have the final say about what I want protection from?

I don’t get it.


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Fun at Physical Therapy?

I’m not any different than anyone else during this pandemic. My only outings every week are to physical therapy. I’ve gotten into a routine now with two other patients. They space us out but there is a brief time we overlap together. At the end of my session, I usually beg Nancy to let me stay longer. Don’t send me home!

Nancy is a very talented therapist and we all know it. She also has a sense of humor so we can give her a hard time because we KNOW she is great.

One of the men obviously has more pain and a longer road to go down than I do. He is usually in a separate room but we crack jokes back and forth. He calls PT “premeditated torture” instead of physical therapy.

Nancy has this streetlight analogy she uses. It drives us crazy. A green level of pain is preferred because it means you are still ok. I did tell her that it’s not easy being green. She thought that was funny, but it turned into bigger laughter when it was quiet and I started playing Kermit singing that song on my phone.

This man has two canes to walk. I can hear and see when one of them falls. I yell out and ask if Nancy has knocked the cane out from underneath him again. He says of course she did. I told him he was lucky because she usually kicks me.

Today was out of control. We exchanged the usual banter and were really proud when a therapist who wasn’t usually there said she wanted to stay in our unit. We are much more fun than other therapy rooms.

I was balancing on the balls I’m supposed to walk on and I look across the room. It was the first time I had seen this guy on the bike. And it was the first time I realized that he had a prosthetic for a leg.

“Oh my God!” I yelled louder than usual. “Nancy, you’ve gone too far this time. The poor guy’s leg fell off!”

Raucaus laughter. I wondered if I had gone too far but he said he has loads of jokes. One time in a hospital he put his leg on backward to freak people out. His sister is making him a t-shirt that says, “Don’t pull my leg. Seriously.”

Later in the session, Nancy asked him how he was doing. “How the hell do you think he’s doing, Nancy? His leg fell off!”

Then it got really bad.

Two of us are laying on tables and our guy is still on the bike. Nancy yells over to him, “Do you need help getting off?”

I couldn’t stand it. I burst into laughter, which started everyone else. The other woman was telling me she had it under control until I had to go and laugh. Leg-guy says the same thing. Nancy says, “Was the only one who didn’t get it?” The three of us say yes in harmony.

Eventually, it was almost time for me to go. By now, Nancy really does have to help him off the bike. The two of them are standing together and she asks him if he needs help. “Getting up?” he says. And the raucaus laughter starts all over again.

Nancy says the redness in her face will probably last forever.

The woman next to me says we really need to get out more.

You said it sister.


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Confusion and COVID19

Perhaps many of you have already seen this, but take three minutes to review this or watch it for the first time.

I haven’t seen anything that reflects what I have been thinking about and experiencing as accurately as this video does. I am already not a news follower, but if ever there is a time to shut off the information, it is now. I find that the biggest and most relevant news out there I hear through conversations with people. I get what I need to know, but avoid the overwhelming amount of bad news. I also avoid banging my head on the wall because of trying to sort out the truth with all the conflicting information.

I think almost every statement in that video clip is something I have heard. But I’m not telling you anything new. My point is not to alert people to the fact that there is confusing information bombarding us.

My point is this:

With so much confusion, how can so many people feel like they know exactly the proper way to respond to this?

I have heard so many people speak with great authority about their opinions. They have lots to say about those that do not agree with their assessment. It has caused tension and has bruised relationships. The media never lies. The media always lies. I’m listening to the government. I’m listening to the Department of Health. I’m not making any changes. I am taking extreme precautions.

And every position between those polar opposites.

Could we be a little kinder to each other? We don’t have any research or data on the last three pandemics America has been through to offer the best practices to deal with this. The fact is, none of us know for certain how to best handle this. None of us. And the facts- the numbers- aren’t even facts. I can give you more than one frightening example of ways numbers have been skewed. Of course, that implies my sources know the truth. See what I mean? Why speak out when you can’t be certain of anything?

Let’s all just do the best we can. Make the most responsible decision for yourself and others based on your understanding of what needs to be done. Give it a real and honest effort. Don’t be lazy and don’t be selfish. But after that, don’t judge anyone else either.

Personally, I watch my clients who are nurses caring for COVID patients the most closely. I’ve known them for years and I’ve known their ethics and sense of personal responsibility. I also know they would cut off a limb or give their life for their children they think are the most precious gift of their lives. Whatever precautions they take to protect their own families is what I trust. That makes sense to me in my heart of hearts.

But that’s just me. You should do what you should do. And I respect that.


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What is There to Say in a Pandemic?

I saw a really cute graphic that had two cartoons side by side. One said “introvert” and it had a stick person sitting comfortably in front of a TV/computer thing. The other had “extrovert” and the stick person was screaming and beating their head on a wall.

Even though I am a writer, I am an extrovert. Well, that is an understatement. I am an extrovert times a hundred. Even a beautiful sunset means little to me until I share it with another human. For years I thought there was something wrong with me, but now I understand it is just how I breathe.

That is my biggest struggle with the situation we are living in. I do what I can to refuel but I’d be lying if I said it wasn’t difficult. Thank God I am still able to do Physical Therapy. I get my temp taken and wear a mask. I’ve grown very fond of my therapist. She works me hard and gives me a lot of her time. She also has a sense of humor. When she asks me to walk backward and then forgets to tell me to stop and I run into a chair, she laughs with me. I asked another patient to tell me when to stop and she agreed. She said Nancy is clearly out to get me.

I also started going down my database (starting with “A” as a true OCD) and checking out accuracy on businesses and then connecting with friends, family, and clients. I hadn’t talked to my college pals in years. We are doing a Zoom reunion tomorrow night. More than one person called me a bright spot in the gloom so that felt great. I’m only on the letter “F” so we’ll see how far I’ll get before we are “released.”

But I have to admit, combined with the five weeks of almost-quarantine after surgery that occurred before COVID19, it is starting to get to me. I wake up with the Groundhog Day feeling so many others have. I find myself blocking video on Zoom business meetings because I start to tear up without warning. It’s not usually full out crying, but I do shed a drop or two. Or three.

Even when dealing with crisis/emergency clients, I wasn’t thinking about the fact that all the outside agencies have also changed their protocols. My normal feeling of competence and the accompanying confidence I’ve developed because of that is wavering on both counts.

And what makes me want to hit my head on the wall harder, is that I’m no worse off than anyone else. Everyone is hit with this. There is no one I can call who isn’t coping themselves. It is almost embarrassing to call anyone, no matter how much they love me, to vent. I don’t want to add to anyone’s already over-burdened lives.

It just occurred to me that even though writing is an introverted activity, it is also a source of venting and purging. So whoever reader you are, thanks for entertaining my feelings. And I think for today I will imagine there are lots of readers, even if there is not even one. I will let myself feel like I’ve connected to many and hope that puts a bit of substance back in my gas tank.

Thinking of all of you as you journey through this.


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Two Steps Forward

And then one step back. Literally. That is the nature of foot surgery/injury and the healing process. Each time I hit a new landmark I get excited, then get reminded that a new place means new adjustments for my body again. Instead of feeling better, it usually feels worse first.

First week was total bed rest. The original bandage stayed in place. I wore the aircast boot 24 hours a day, even when sleeping. Of course, no driving.

One week later, I was able to get up. I could take the boot off at night. During the day I used two crutches and the scooter when I could. My body was quite sore from both of those aids but I eventually got used to them.

Another week and I was able to take the bandages off for good. Then I had an ace bandage for another week. Then that came off.

Today I had my one month after surgery appointment. I was released to drive, thank goodness. And for the first time in four weeks, I could wear a sneaker. I bought a new pair online and saved them for today. The doc loved them and said they were really good for what I needed.

I’m still supposed to use the scooter whenever I can. I realized that I can actually wear a pair of jeans now. I’ve been wearing sweats for a month. So much I should feel better about.

Now I get to start physical therapy twice a week. And he did mention something about a possible six months more before we know if the surgery was even successful. Ouch.

But the biggest ouch is that my foot has hurt more today than it has in a while. That boot really protected my foot and kept it immobile. I’m sure it will take a few days for it to start to feel better while wearing the sneaker. Instead of celebrating, I’m going to take some Tylenol and then grab a long nap because I’m wiped out.

I have to say, some good life lessons come out of it. Patience for one. I’m also learning a bit about our society and how they treat folks with handicaps. Some people are so thoughtful and kind, others make sure they validate that you are indeed an annoyance with all the help you need from others. I hope I stay sensitive to the people around me once I am not the gimp I am today.

And hey, I am still supposed to avoid stairs when I can. That means no laundry duty for me!


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Footloose and Fancy-Free

Um, that is not me these days. After 16 months of foot pain, the surgery finally happened last Tuesday. It is called Topaz and they drill little holes in the tissue above the ankle which causes blood flow. Blood flow supports healing. This time, no ice or ibprofin. Inflammation is a good thing because it means the blood is flowing.

If you know me, you are aware I’m a bit of a workaholic which generally means I don’t follow medical orders well. This time, I have been the model, compliant patient. I’m not taking any chances on this.

Compared to other things, this foot thing isn’t so bad. I’ve worn an aircast 24 hours a day for the last week, along with a compression stocking on the other foot. The annoying part is sleeping with them because I get ridiculously hot.

Foot and Ankle Cast - Royalty-free Orthopedic Boot Stock Photo

This morning was the first day I was allowed out of bed. Yesterday was the longest day of my life. I wanted to jump out of my skin. I couldn’t wait for today to try and establish some kind of normalcy again, even though I know this will still take a lot of time. I was out of sorts until night time when I finally figured out what to send Tim for. Lucky Charms. A couple bowls of that made me very happy.

When I woke up, I took my shower with the plastic bag. This time I stood on my own instead of sitting while Tim used the handheld showerhead. I couldn’t believe those ten minutes on my own wore me out. I went back to bed immediately and slept for a solid two hours.

Two out of three meetings were canceled. One out of two sessions rescheduled. Thank God. It’s now 7 pm and I’m worn out, even with the napping. Tomorrow morning I see the doc for post-op and I’m hoping he will shed some light on what is next. The surgery went well, but there is no way of knowing if it worked until I start walking again. Not sure how long that is going to take but I know I won’t shortcut the process. I can’t afford to not have this be successful.

As usual, the thing I have been reminded of is not to take your health for granted. The smallest things are the biggest reminders. I know I can’t walk without crutches and I can’t walk far. But when I sit on the bed and see the dresser a few feet away but I can’t go pick up the comb, that’s when I realize just how helpless I can be. I realize how much I have to depend on other people.

And of course, I realize that so much of my day is filled with things I think are necessary, but they really aren’t. Even though I got cabin fever by the end of the week, there was something nice about the simplicity I was reduced to when I had to stay in bed. Lots of “noise” gets cut out.

Folks around me are going through more difficult things. A surgery with a large mass. The loss of a parent. I will take this small bump in the road. Besides, just about anything is bearable with Lucky Charms!


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Grace Guest House

I had the privilege of visiting Grace Guest House this week. My friend told me to check them out and now I know why. In a world filled with a bunch of nonsense, there are still inspirational things to counter them.

It is one of those beautiful, restored homes in South Buffalo, with embroidered signs and other pictures that warm your heart and calm your soul.

This sign pretty much sums up who they are and what their purpose is. Anyone that is in treatment in a medical facility is welcome here, including any supportive family or friends. Often, family comes in from out of town while a loved one is being treated somewhere, or living out the last days of their lives. Grace House gives those folks a place to stay.

Perhaps family doesn’t live out of state, but lives far enough away that it is a strain to visit regularly. Grace House gives those folks a place to stay.

Perhaps you are the one getting infusions, chemotherapy or some other treatment. You are exhausted and find the transportation back and forth cumbersome and additional, unneeded stress. Grace House gives you a place to stay.

If you have ever been in any of those circumstances, you will know how life-changing it would be to hear, “Rest awhile.”

There isn’t a way to capture the serenity in this place, but I can show you some of the rooms. It’s not a hotel, it’s a home. And they have tried to think of everything to provide convenience and comfort.

Keeping up with meals is a pretty taxing process when you are in a medical crisis. There is a homey dining area with a fireplace that is quite lovely. Cynthia Battista, president, tells me that folks get to know each other and often pull the tables together to enjoy a meal. Did I mention that Grace House can cook for you? No, you didn’t misread that.

For those who find comfort in doing their own cooking, there is a pantry stacked with food, and a lovely kitchen for use. When I was there, a mother was making homemade rice pudding. The room had an aroma of cinnamon. Rice pudding was one of my dad’s favorites. My eyes filled with tears of happy memories.

Then I noticed on top of all the kitchen cupboards, there is a display of sparking angels looking down. It certainly felt like they were overseeing the lives being lived there and sending their blessings down.

There is a chair lift to the upstairs rooms. Grace House is continuing to make adaptations for further handicap accessability. They also provide washing machines and dryers for the convenience of the families.

The cost for all of these things are unbelieveably affordable. For a shared room, it is $40/night. They have access to bathroom facilities nearby.

This is a shared room with a couple of the staff (who are mostly volunteers, by the way). They couldn’t be more pleasant to be around. There are suites available for $60/night that are private. The bathrooms are private. For exceptionally large groups who need to be together, there is a large parlor area off the suite where the doors can separate them for privacy.

Grace House lives by grants and donations. While I was there, several cases of toilet paper arrived from a local business. All of their supplies are given by gracious donors.

Obviously, I was incredibly impressed. The space is somewhere that feels like home away from home. When you are going through some of life’s toughest challenges, there is no way to describe the value of how that touches you.

But mostly it is about what this quote from Mother Teresa says. The love and generosity are felt everywhere. The picture reflected in the mirror is the family that inspired Ms. Battista to create Grace House. You can’t talk to her for more than a couple of minutes before her kind and loving heart send its energy to you.

There is a wish list for them if you, your church, school, or agency would like to contribute and be part of this service. Students and adults alike can volunteer their time.

I look forward to when I can help a client family by providing them this resource. Thank you Grace House, for this desperately needed service, and for providing it with such grace. You have done your name justice.


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Workaholic

I’ve been labeled a workaholic again lately. It’s not the first time in my life. Over the last handful of years, things had slowed down a bit. I spent a year and a half marketing my new services but it took that long to for it to take off.

Now I’m back in full swing. I know where the work stuff comes from. Straight from my upbringing. Dad never missed work and he was clear without saying a word that working hard was a very highly valued ethic to live by.

I was in a session talking with a woman who is facing that struggle so many of us do. How do you honor your instinct and gifts of helping others with taking care of yourself? How do you not over-extend and over-burden yourself?

Fine line to draw if you ask me. A very fine line.

I’m proud of my work ethic, but as I was mulling it over in my head, I thought I’m really more of a “responsibility-aholic” than a workaholic. My days are bounced back and forth between the several careers I am juggling, but also being a homeowner, a parent of a teenager (academics and sports), caring for an aging (and failing!) pet, being in a relationship and having a balanced social life. Yes, even having a balanced social life I consider a responsibility in order to take care of myself. You can’t help others if you are depleted.

I want to officially coin that term. Not sure if there’s a huge difference between work and responsibility, but it feels like there is at least a small distinction.

I’m on Step One: I admit I am powerless over “responsibility-ism”. Not sure if my life has become unmanageable. I can usually manage ok when my support systems are in place. (Although some of them suffer from the same disease so they aren’t always available.)

Just need to stop and smell the roses en route to my next thing. Today it was stopping to pet the cat for a few minutes when I was making the bed. She is a purring machine so I paused my “list” and enjoyed her joyful personality. Gotta do things like that more often.


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The “Wow” Experience

Last weekend I started my first client managing/advocacy job. My initial meeting was in a hospital. It’s a large place with 16 floors, 71 rooms to a floor. As I found my way to her room, I had goosebumps. Out of the 1,136 rooms available, my client was in the exact same room my dad was back in December of 2017, 8 months before he died.

I’m not gonna lie. It was hard at first. I still miss him terribly. I’m anticipating Father’s Day soon and I know it will be hard. But I also had to admit this was more than coincidence. I was meant to be there. This is what I’m meant to do.

I was relieved because in my experience, this was one of the best hospitals I have interacted with. Now I have to take that back. It was an awul weekend and the worst was Monday (so you can’t blame it on the “weekend” staff).

The social worker, PA, secretary… virtually everyone we talked to with the exception of one male doc and one male guy at the desk, was nothing short of combative, argumentative, and downright wrong in what they were saying to us.

No matter how confident I am, when that many people beat you down, you start to question yourself. Thank God that night, my former spiritual director who was there with me, called to debrief. She said, “Wow! What WAS that??” I told her sadly, that was the typical medical experience. I was grateful to know she saw it as horrifying too.

That night I was in tears as Tim and I talked. Was this a mistake? Did I spend 18 months to get this job only to discover I didn’t have the guts to do it?

Thankfully, my client was transferred to rehab. I was nervous because it was the same company where my dad was at, but an entirely different location. When I arrived, it was clear that several mistakes had been made. Some insignificant, some more serious.

However, to my surprise, every person I asked to speak with showed up within 10 to 20 minutes. Every one of them- unit manager, physical therapist, aides, and especially the social worker- were respectful, listened, and appeared to want to follow through with what was discussed. (We will have to wait and see if things actually get done.)

I was so relieved. I’m not crazy. I can do this. I do know what I’m talking about. I’m not an agitating person. When you are dealing with folks who aren’t defensive and actually listen to what you are saying, it’s a peaceful environment. And that is certainly better for the patient.

Thanks to the staff. I can’t name you, but I pray your kindness will come back to you this week!


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Yearly Physical

I have my yearly physical in two days and I’m dreading it. Let’s see…

I had foot surgery seven months ago and my foot pain is worse than ever. It’s taken this long to end up in a situation where I have an appointment with a second surgeon who is probably going to tell me I need a second surgery. That’s ok, but frankly it should have been last December. Seven months of nonsense and chronic pain.

I do want to pick her brain about the latest treatment the FDA just released in February for chronic, refractory depression. It made sense to me to wean off all the meds I take for that so I can develop a baseline. I’m doing it properly- very slowly over time. I already see a difference though. There’s an increase in crying and a decrease in tolerance for stress. Not a surprise, but I wish I had something happier to report.

My guess is I’ve also gained twenty pounds since last year and believe me, you can tell. I’ve weaned myself off my supplements to get a better baseline for that as well. I was intending to eat more healthy and get off the pre-diabetic status. I’m going to plead with her not to even test my blood. I’ve gone the opposite direction. I can’t even imagine what my levels are like, but my weight is an indication of what it would show.

Sigh.

I’m hoping that Tim has off work though so he can go and meet my doc. She will be thrilled about that. Last year we had fingers crossed that he was going to stick around and continue to be who he seemed to be. That is the one bright spot I will be happy to report on. He treats me like a queen!

Future blogs will probably discuss the new treatment out there when I have enough information to write an educated paragraph or two. In the meantime, I will just keep hoping to somehow make some progress on these long-term issues I have. Gotta love the aging process!