Help for Healing

Bitter & Sweet, living daily with grief


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Guest Blogger

It’s been a while since we’ve had a guest blogger.  Jennifer Scott has written the informative article below. I apologize that her pictures did not translate over!  Her website is http://spiritfinder.org/ if you would like to know more. Thanks so much Ms. Scott!

Improve Your Overall Health While In Addiction Recovery

It was a long road, but you made it. After years of substance abuse and suffering from addiction, you managed to get clean and formally enter addiction recovery. This is a great time for you, but it’s not going to be easy. Although you’re strong enough to beat addiction, that doesn’t mean you can’t use some extra help to make this journey easier.

One of the best ways you can help yourself through the recovery process is by improving your overall wellness. But what does that even mean?

Being Healthy Supports Addiction Recovery

The University of California Riverside lists seven dimensions of wellness as a way of defining wellness:

  1. Social: Having friends and family to socialize with.
  2. Emotional: Cope with stress and challenges.
  3. Spiritual: Having peace and harmony.
  4. Environmental: Living safely.
  5. Occupational: Having a good paying and fulfilling job.
  6. Intellectual: Learning and challenging yourself mentally.
  7. Physical: Being physically fit and well.

These elements are imperative if you want to be successful in your addiction recovery journey.

As samhsa.gov explains, wellness and health are particularly important for people struggling with a disorder or addiction. Chances are, your body and mind were hurt by the addiction, so your chances of addiction recovery go up when your wellness improves.

What You Can Do To Stay Healthy

Wellness is important to you, but how can you improve it? It starts by knowing yourself. You need to understand what helps you socially, emotionally, intellectually, and so on. For example, what type of social activities do you love? Extroverts might love big parties, while introverts prefer small gatherings. As you explore your options, write down what works for you.

Then turn that list into a checklist that you can regularly review. Think of it as a road map to your overall wellness, or at least reminders of what you should be doing. Addictions And Recovery has a great example of a checklist you can use to monitor yourself. It includes items like:

  • Call your friends or family when you have problems.
  • Keep eating healthy and work on getting enough sleep each night.
  • Avoid the “friends” who helped you get addicted in the first place.
  • Engage in hobbies that promote wellness.

You also need to keep track of how you are doing week to week. Here is a great self-evaluation checklist to monitor your progress. By checking in with yourself each week, you can catch any slips before things get out of hand., but you can also see how successful you are, thus boosting your confidence and self-esteem.

Holistic Therapies That Work

As you continue to develop individual strategies to promote your overall wellness, you should also look into holistic therapies. This is not some kind of New Age medicine! Instead, these are treatments that work on your overall wellness — and they can help with your addiction recovery.

The Treehouse explains that holistic therapies can play a vital role in regaining your previous life. Although everyone should have their own personalized plan, here examples of holistic treatments that can help:

  • Acupuncture
  • Meditation or prayer
  • Biofeedback
  • Yoga
  • Herbal therapy

Even just getting some regular exercise can help you get through addiction recovery more smoothly.

Your Overall Wellness Matters

Addiction takes a toll on your mind and body. Although you’ve beaten it for now, addiction recovery is still a tough road to travel. That’s why you need to look to your overall wellness. Examine your life through the seven dimensions and find ways to support those that work for you. Keep a checklist handy, and find a holistic therapy that interests you. And remember, taking care of your wellness is a vital part of your addiction recovery.

 

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Spect Imaging Results

Last year, I started surfing the net about Spect Brain Imaging. Dr. Daniel Amen is the name I had been turned on to and I began listening to his many lectures on-line. Since then, I have spoken to a couple of critics of his work. Overall, the feeling is that he claims brain imaging can do more than it actually does, but there is merit to the concept.

My interest was twofold. One, my son plays hockey and is a defenseman. He takes a lot of hard hits and is a tough player. Dr. Amen works a great deal with NFL players and has done a ton of research on concussions and the effects on the brain. Secondly, being a psychiatrist, he showed some fascinating brain scans related to depression, ADHD and other conditions.

As a mom, I want to know. As a mental health counselor, I want to know. And as a person that has had several decades of struggling with depression, I want to know.

Turns out there is one psychiatrist in western NY that does Spect imaging. I waited several months and finally got in. An MRI and Spect image together seem to offer the greatest combination of information, so I complied. Last week I got the results.

“Impression: Abnormal Resting Brain Bicisate Spect Due to:

There is diffuse frontal cortical hypoperfusion with pericallosal medial frontal sparing, most consistent with long-standing or refractory depression.”

What the heck does that mean? As the local skeptics suspected, the results didn’t do much of anything to change the course of treatment for me, which is why there is question as to its usefulness. However, it did something less tangible for me, but still quite important.

People who don’t struggle with depression often have difficulty understanding it. For people like me who have a good family, an excellent support system, and a host of other “blessings” in my life, understanding how I could be depressed sometimes is almost impossible. And for people like me who are self-critical, there is a huge level of guilt that comes with the depression because I am fully aware of all the gifts in my life. Feeling depression seems wrong and ungrateful.

I’ve tried absolutely everything over the years. I couldn’t even list all of the medications that I’ve gone through. Counseling, of course. Psychiatrists. Acupuncture. Spiritual Direction. Daily affirmations. Gratitude journals. Vitamin D. I can’t even remember all of the latest and greatest hopes and remedies to help cure depression that I have tried.

Now I’ve “tried” brain imaging. I actually found it to be validating. I can now articulate in another way what is going on with me, especially when talking to the people I run into that think I should be able to change how I feel if only I would really try. My brain indicates refractory depression. When I asked what that meant, I was told, “resistant to treatment.” The doctor said that is perfectly consistent with how I describe my life. Medications help me manage, but I’ve never been free from depression.

Currently, we know about Serotonin and Dopamine. There is research happening that looks at entirely different types of issues. There is some success, but we aren’t close to having anything on the market yet. So until then, I will keep managing the best I can. But I also can now articulate what I have always known in my heart: My wiring doesn’t respond to the typical treatments. It just doesn’t. No amount of willing or wanting or self-discipline will alter that.

I will work on dropping the guilt from the list of emotions that come along with the struggle. THAT is useful.


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Minor Frustrations

Last weekend, Frankie took a hit in his last hockey game of the season. I watched his teammates huddle around him, probably so he wouldn’t go after the kid and get suspended or something. It wasn’t necessary because I think it will be a long time before he finds himself in that situation again.

A few minutes later, he skated off the ice. He never does that voluntarily so I knew something was up. His coach told me later that he took that hit to his head and was feeling dizzy, so he removed himself from the ice.

Of course, Frankie said it was no big deal and he didn’t need any followup. The problem is, I’ve been following Dr. Daniel Amen online (see my spect imaging blog) and know just enough to make me dangerous. Head injuries are nothing to mess around with. At the same time, I don’t want to over react either.

I sought out a professional opinion and received the name of a pediatric neurologist. After spending a few days playing phone tag, I spoke to a nurse who wouldn’t say one word to me other than he needs to be a patient before they will talk to me. I get in the age of law suits that docs have to protect themselves. And I get that it’s generally bad practice to say too much without seeing a patient. What I was looking for was general information and protocol. I expected something like, “Well, you know of course it is best to come and be seen personally by the doctor. We think that any time there is a hit to the head, no matter how big or small, it should be followed up with an x-ray.” Or “You know of course it is best to come and be seen personally by the doctor. Generally though, if there are no symptoms such as throwing up or blurry vision, there is no need for an x-ray.” Docs and nurses give that kind of advice all the time. Every time my dad is released from the hospital they say, “Call us if he spikes a fever or vomits.” Is that any different?

I emailed back the first physician and got back a curt reply. I realize that I offended him which I certainly wasn’t trying to do. He said that a doc shouldn’t say anything without a personal evaluation (which I wasn’t asking for specifically, just for some direction about how to know what signs to look for if further followup is needed). He also said that is how law suits happen (which I know would be awful, but then it supports by original complaint, it comes down to money now most of the time).

He also said that I could find generic information online. I thought docs usually hate when patients do that. I wasn’t trying to be lazy. I actually asked the nurse if she could tell me any sources of information that are credible and reliable. She wouldn’t answer that either. His last comment was that this doctor was ethical. I wouldn’t know. I couldn’t talk to him, only his nursing staff.

I don’t want to be a cynic. I don’t want to be part of the problem. But how do you not end up feeling like in the end, it feels more like it’s about getting to bill us for a patient appointment?  And for a specialist like that, I’m sure it would require a referral and more extra steps. I just want to be a good mom. Not over reacting, not under reacting.

I will do my own research, but I stand by my reaction. I’m very disappointed in the response I got. There are ways to give out good information and still cover your ass, but I guess you would have to want to.


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Anger with every Paragraph

As I continue to pursue my next career step, I was advised to read a few books. I just finished “Being Mortal” by Atul Gawande which I loved every minute of. I felt validated with a lot of the beliefs I’ve come to in this work, and I learned some new things where I am trying to make adjustments in my thought process as I try to assist others.

Now I am reading “An American Sickness” by Elisabeth Rosenthal. It is also validating, but it comes with extreme frustration. Almost every paragraph I read makes me angry all over again, learning about the things that happen in our medical system across our country.  Things that I have suspected and felt, but now know there is plenty of fact to back it up.

The kicker was reading about Medicare and the observation status problem for patients. It was exactly what happened with my father before Thanksgiving. I blogged about it and the madness of trying to get his care covered by insurance. The last paragraph of that chapter informed me of a law that Obama passed in 2015. Had I known about it, I would have kicked that hospital’s ass. They were definitely not even close to compliant, but were very clear what they would NOT do to help us because of their strict compliance to law. I mean, I do a pretty good job fighting for my dad, but if I keep learning more information, I really feel sorry for these folks in the future. Education is power!

I have mentioned several times in blogs and my books how much I respect my doctor. She is incredibly knowledgeable and very thorough. She truly cares about me and my family. But sometimes I have run ins with the staff, which unfortunately makes the same systematic mistakes that most health systems do.

This last week was very frustrating and maddening. Hell, I was ridiculously pissed off. When you are sick and scared, the last thing you need is to have unnecessary conflict with your medical team. I was told over four days, by three different health professionals on the phone that I definitely had the respiratory flu. I was prescribed antibiotics, told by another to throw them out, then told that the second doctor shouldn’t have had me throw them out.  By day four, I wasn’t any better with any of the medications I was taking, prescribed or otherwise.

In spite of being treated like an over-reactive hypochondriac, I called back yet again. I was finally sent to get a chest x-ray, which was the first time I had any kind of medical person actually see me. Pneumonia. Crap. Now they don’t know if I had the flu and it caused pneumonia, or I just had pneumonia all along. And it is too late to be swabbed now so I will never know. It’s important though because the contagion and treatment are very different for the two conditions.

I am going in tomorrow, a week after I first called to see the doc, just to make sure things are going in the right direction. I was able to talk to my favorite nurse today and she explained a lot to me. She explained that people tend to say that everyone gets pneumonia now but that it is indeed life threatening. I probably won’t fully recover for six months. And I absolutely have to sleep and rest and take it easy. (None of this was told to me before now.)

That’s always hard for me. My life requires a lot of time commitment and energy. If I don’t feel well, it is easier for me to hold back. But when I feel ok, it is difficult for me to remember that I am not fully recovered and I still need to take it easy. The steroid phase is really a factor as well. I remember vividly from Tim that steroids treat symptoms but not the disease. Tim looked great and worked but he was literally a few weeks away from death.

My poor dog doesn’t understand why she doesn’t get her long walks. And I have to just keep telling myself to slow down, rest, expect less of myself, etc.. I will feel better though after having the doc actually see me in person tomorrow as well.

Always try to educate yourself as the consumer. Unfortunately, even at the best of places, you still have to fight and advocate for yourself or your loved one. Your life could literally depend on it.


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When Sense Goes to Cents

This has got to be one of my most clever titles ever. It references what I consider to be one of the biggest problems our medical system has, the change from service to business. The almighty buck is the bottom line. Thus, common “sense” in practice has gone to worrying about “cents” instead.

If you follow Grey’s Anatomy, last week’s episode got me in a snit. It centered around a surgeon who knew she was having a heart attack but couldn’t get the doctors to listen to her because they were following their “protocol” and discounting the actual patient. Of course she ended up having the heart attack and almost dying because of it and I just sit there with my whole body tensed up knowing this isn’t just drama, it’s what really happens.

Last week I took Dad to his appointment with the cardiologist. The nurse had to check his pacemaker. She and I started chatting. Poor Dad. He must think to himself, “Oh God, here we go again.” I explained to her that Dad had switched to palliative care and that I found myself having to explain what to means to medical professionals, even those that work primarily with the elderly. Palliative does not necessarily mean a person is in the active stages of dying.

She told me that she was having the opposite problem in her family. I asked her to explain what she meant. She said while I was trying to get unnecessary services for Dad decreased, she finds herself fighting for services for her sister. Her story was appalling. I was so grateful she shared it with me because it gave me an entirely different perspective. It’s the same problem of having to fight a giant, broken system, but she was coming from the other side of the fence. It stretched my mind and further ignited my passion to try to change the ridiculous way things are run these days.

Her sister is relatively young, in her fifties. She has a degenerative, incurable disease and is now in as assisted living place where she gets medical care 24/7. At this point, her symptoms are similar to that of a quadriplegic as she has no use of any of her limbs. Like Dad, she has a swallowing issue. She was evaluated (like Dad has been a million times) and it was determined she requires thickened liquids. What often happens at this point, is that dehydration becomes an issue. It’s hard to keep drinking when you are on thickened liquids. Dad made me taste his thickened water at his last rehab stay. It was gross. Dad has decided he’d rather take the risk of choking than live the rest of his life drinking that stuff. I don’t blame him.

This woman is in a different place though. She is much younger than Dad and her brain is sharp. Her body just isn’t cooperating. Her sister noticed on one of her many visits that a little bit of regular water was helping immensely. She could communicate with others and would feel much better for a brief time. Dad’s nurse said that she even showed the medical team what a difference the water made and they agreed it made quite an impact.

Now is when the madness starts. Because she has been medically tagged “thickened liquids,” the staff is unable to give her even a sip of water. They can’t stop a family member from giving her some, but they can’t officially do so. Once she is labeled, there is no room for any exception, even when it is clearly medically indicated.

Upon inquiring further into this insanity, she was told they could indeed give her water if her status was changed to “comfort” care – i.e. palliative care. However, if they did that, she would no longer receive physical therapy or any other services she was currently given. Is it just me or is that ridiculous? It seems particularly cruel to do to a woman who can’t move her own arms to get herself a damn sip of water.

It’s about billing and regulations. I certainly understand the need for regulations, but why should you have to stop using common sense? Is there absolutely no room for even the tiniest piece of individual need? Not if you want insurance to pay for it.

My blood boils when I hear this stuff.  To Dad’s nurse- I don’t know if you are reading this, but if you are, thank you for sharing your story. I have no idea how it will take shape, but I am working to try to effect change for people like you and your sister. It’s an uphill battle with little success, but I’m not going to stop trying. Let’s try and bring compassion back to patient care.

Isn’t that just common sense?


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Janet

My sister Janet is eight years older than me. I have some memories of her as a kid, but mostly there was a big enough age difference that we didn’t steal each other’s clothes or boyfriends so there wasn’t a lot of conflict.

She is the middle child, but for years we also called her the Perfect Child. As adults, I found out that she always hated that so I stopped saying it. I also call her Dad’s favorite daughter and I haven’t stopped saying that. I joke around about it, but it doesn’t seriously bother me because she is truly one of the kindest women I’ve ever known in my life.

I was just talking with a client yesterday who has a family member with cancer news. I remembered when we starting testing Tim and suspected it might be cancer. Janet lived near Rochester so she was an hour-and-twenty-minute drive away. I was on the phone with her when she said, “No matter what happens Darcy, you won’t be alone. We will be there every step of the way.” And she was.

Twice during Tim’s five months of illness, she took an unpaid leave of absence to come and help. I never forgot that because there were other relatives/friends that lived closer and were more close to Tim than she was, but she was the one that didn’t bat an eye. She just took the financial hit and came.

One memory that particularly stands out was when the decision was made for Tim to go to Hospice to try to get his sleep regulated. I called her to tell her and she made all that distance and got here before the transport car came. She and I took Tim around the property in a wheelchair to give him a chance to look at everything, reminisce, and ultimately say goodbye.

She has been here again, this time for Dad. She arrived the day before New Year’s Eve from Tennessee. And she is still here. She leaves Saturday which means she was here a full three weeks. Dad required 24 hour supervision until this week so she literally spent the whole time with him in his assisted living apartment.  I can’t even begin to express what a massive relief that was to me.  I know Dad is going to miss her terribly, as will I.

I enjoy her company immensely, but I was in a catch-22. She was here to take care of Dad, which was my chance to get a break. I wanted to visit with her, but I needed some distance from the situation at the same time. Thank goodness she completely understood that.

Even though she lives in Tennessee now, she still had a job where she had to take an unpaid leave of absence to be here. To take a three-week cut in pay when you live paycheck to paycheck is an incredible sacrifice. She makes it without blinking an eye, without a question. If I asked her to stay even longer she would.

Her husband supports her being here, even though I’m sure he misses her. Her daughter supports her being here, even though Janet misses her little grandson so much I’m sure her heart aches. So thank you to all of her family who let us borrow her capable hands and her ever-giving heart.

And how do I thank Janet? I couldn’t possibly. But deep down, I know she knows. She loves me too, and came to support to me. Mostly though, she did it for the deep love she has for our dad. He’s not an expressive man, but I know he appreciates her as much as I do.

IMG_20180109_101722452_HDRThank you dear Janet. You truly are perfect!


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Put Your Money Where Your Mouth Is

I have been lecturing on death/dying/end of life planning for four years now. As my dad has been going through medical issues, I find myself on the other end of that conversation. I hear doctors and nurses say things almost verbatim to the things I have said myself many times over. But it has been a good wake-up lesson for me to have it be so personal again. It’s been a while since the information has been so relevant and in my face.

A few weeks ago when Dad was in the hospital, we had to make some decisions. I have been anticipating this moment for at least a year, maybe longer. Yet somehow, I felt shock, blind-sided, unprepared. It was strongly reminiscent of what I felt when Tim passed. I had been at his side for months, thinking I was ready for the moment when he would go. But when they announced his death, I felt my knees literally buckle underneath me. I was shocked. How was that possible? Yet it was the definite reality I lived.

Dad made a decision to go palliative a few weeks ago. It totally makes sense. It’s a rational, reasonable decision. He has Parkinson’s, a degenerative disease that only gets worse. There is no getting better. After seven hospitalizations in 14 months, there will be no more tests, procedures, labs, hospitals, etc.. The decision was made through a very teary-eyed conversation between myself, my sister, and the nurse practitioner. She did an excellent job, just like I would have done in that position. She told us that Dad had spared us making tough decisions but clearly making his wishes known in his MOLST form. It was end of life planning working exactly the way it was supposed to.

Then why the hell is it so hard?

Now don’t get me wrong. Dad does not appear to be in the active stages of dying. But he is ready to when the time comes and wants quality of life until then. He could be around for a long time, no one knows.

My sister and I took him to see his dermatologist yesterday. We updated her on what has been happening. When we were ready to leave, she cried. She apologized if she was upsetting us but I told her it always feels good to know other people love Dad too.  He has a great team of doctors that have taken years to gather together.

Again, my point is just this. While I talk about this “stuff” quite frequently, it is still hard to face when it isn’t just concepts we are talking about, but someone I love dearly. It renews my passion again to help people think about these concepts before they are in the middle of crisis. It’s hard enough to do with preparation! I’m starting the process of figuring out my next career move but I know it is going to have something to do with helping people on this journey.