Laura Allen’s Blog

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Caregiver Syndrome, Part II

December 18 of 2014, we got the official diagnosis of my husband’s Stage IV cancer…not what I wanted for Christmas. In the past 11 months, he has had 118 doctor appointments. He is cancer free at this moment. Just three weeks after he completed 35 radiation treatments and 7 rounds of chemo, he suffered an abdominal aneurysm–and survived. The majority of people who have an aneurysm die. He was fortunate to be airlifted to the hospital, and the vascular surgeon was standing on the landing pad when he got there. He has had the best of care. Although he has lost 40 pounds that he didn’t need to lose, has a bad case of chemo brain fog, and says he has about 65% of the energy he used to have, he is just lucky to be here, and I’m lucky to still have him.

This has been one of the most emotional times of my life. Fear, shock, anger, denial, worry, and every other negative emotion has been my companion for the past year. There have been a lot of highlights, mainly from the outpouring of love, concern, and support we have had from friends and family and even total strangers. I often think of our lives in terms of B.C.–Before Cancer.

I didn’t know there was any such thing as Caregiver Syndrome before I became a caregiver. Even though he is well at this time, I’ve still got the syndrome. I still worry. I cringe when I go to the mailbox because I know I’m going to find another medical bill that I don’t know how we’re going to pay. I’ve spent the past year fighting battle after battle with our insurance company, filing appeals, and begging them not to deny payment for services and to extend continuity of care after they dropped the Carolinas Health Care System from their network. 6 of the 8 doctors that have been involved in Champ’s care were members of that system. It has been a nightmare.

I’m a control freak, and I hate it when something is beyond my control. His health is beyond my control. Our finances, at this moment, are beyond my control. We will go to our grave thousands of dollars in debt from this experience. I have felt like I’m personally out of control. I’ve never been a crying person, and in the past year have probably shed more tears than I’ve shed all together in my entire life.

Some good things have happened, in spite of it all. We made the decision to downsize at THERA-SSAGE–not close the business–and Champ has been able to start doing massage appointments again. He had to retire from carpentry after 45 years, as the physical labor of it is just too much for him. He still sleeps a lot. Some days he goes from the bed to the sofa and back again, and that’s it. That’s okay. Sleep is restorative. I accepted a new job as the Massage Division Director of Soothing Touch, an international family-owned company that manufactures massage and skin care products. They’re based in New Mexico, but I get to work at home, and I am traveling a lot for them. I love the products, which I had been using for about 7 years before joining the company, and I love the people I work with. I curtailed a lot of my teaching activities this year, but I managed to do three book revisions while Champ was sick…many times I took my laptop to the hospital and worked on them while he was receiving his treatment. Where there’s a will, there’s a way. I hired an office manager to run our clinic so I could bow out and focus my attention on the new job. I have been teaching professional ethics for many years, and I was inspired to create a new class on The Ethics of Working with People with Cancer.

I have a new appreciation for cancer patients, and for their caregivers. One of my friends who beat breast cancer a long time ago said to me that she figured out while she was sick that she would much rather be the sick person than the family members who were caring for her.

When you’re a caregiver, you put everything else on the back burner. I know I did. I stopped getting regular massage. I got depressed. I suffered from anxiety. I alternated between stress eating and not eating at all because I was stressed. I either wanted to cover up my head and sleep, or laid awake worrying. It’s been a journey, and it’s not over. Champ will receive PET scans every three months for the next five years. He will have the camera put down his throat every six weeks for another six months. He goes to have his chemo port flushed out every month. He sees the vascular surgeon for regular ultrasounds. He has appointments just to get weighed so they can make sure he is at least maintaining and not losing any more weight. It’s still a little shocking to me to see his changed appearance, but I’ll take him skinny rather than not having him at all.

Every time I hear of another person who has been diagnosed with cancer, I just cringe…for them, and for their loved ones. All you can do is the best you can do. I just keep putting one foot in front of the other and hoping he stays well and continues to get his energy back, and that the brain fog lifts. I still have moments of fear, depression, anger, and the whole gamut, but those are outweighed by the gratitude of still having my husband. If you’re going through this, or have already been through it, you know what I mean. May peace be with you.

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To every thing there is a season…

…and a time to every purpose under the heaven: (Ecclesiastes 3:1).

As Autumn approaches (and not a minute too soon for me, personally, North Carolina on those humid 100-degree days is not my favorite thing), I am reflecting back on all that has happened since this time last year. It will be a year ago in September that I got very sick with double pneumonia (just a year after my first bout with it), a urinary tract infection that went systemic into my bloodstream, and a diseased gall bladder. Last November, just as I was recovering from that, my soulmate and husband was diagnosed with Stage IV cancer. Let’s just say it was the winter of my discontent, and my distress, and my depression, and that’s putting it mildly. Spring rolled around and my life was consumed with doctor visits, constant battles with the insurance company, physically taking care of Champ while trying to keep my business running smoothly. Add that to the mundane chores of everyday living, like keeping the housekeeping and the laundry and the grocery shopping all done and the bills paid. While he was recovering from the cancer and the sheer exhaustion from treatments he underwent, he suffered an abdominal aneurysm. I was overwhelmed emotionally and physically and financially and every other way, suffering from fear and anxiety attacks and paranoid if I got so much as a sniffle, because I just couldn’t be sick while Champ was in the condition he was in. I had to cancel several trips, including my annual trip to Ireland to teach, and let go of a lot of things that just paled in importance.

None of us know the day or the hour that catastrophe might strike, and that some life-altering illness or other tragic event will take place. And we don’t know the why. Some believe that everything happens for a reason; some believe things happen without any rhyme or reason. It’s easiest, and human nature, to think that things happen to other people for a reason, but there’s no reason for it to happen to us. Bad things happen to good people, and good things happen to bad people all the time. We have lost several good friends to cancer this year. I see people on my FB pages fighting that battle every day. I feel for them, and their caregivers, too.

Some great things have happened this summer. First and foremost, Champ was pronounced cancer-free. He still has to see the oncologist every three months for the next five years, but he’s getting better every day at the present time. He just eased himself back into doing massage for the first time since last November when he was diagnosed, and he had seven appointments this past week. I accepted a new full-time job with Soothing Touch as their Massage Division Director. That necessitated my hiring someone to run THERA-SSAGE, our chiropractic and massage clinic in Rutherfordton NC, something it was hard for my control-freak self to turn over to someone else, but it seems to be going well. I’m loving my new job and the great people that own and work for this company. I’ll be meeting those I haven’t met yet this week when I make my first trip out to the factory in New Mexico.

My new book is finished and will be released in October. I finished another manuscript, this one for the 3rd edition of the Plain & Simple Guide to Therapeutic Massage & Bodywork Examinations, and the publisher accepted the first draft. It will be out at the beginning of the year. We enjoyed our trip up to Indiana for the World Massage Festival, and also visiting with AMTA folks during weekends I was teaching in Greensboro and down on the NC Coast. I’ll be attending the National Convention in Pittsburgh to represent Soothing Touch. I’m participating in a new CE distance learning project with some other great educators that will be rolling out any day. While I was at the World Massage Festival, I got invited to teach a class in Trinidad next year, so I’m looking forward to that. I also got invited to speak at the 2016 Society for Oncology Massage gathering. Even Champ’s cancer had a few silver linings. We have always appreciated each other, but now we appreciate each other even more. We also appreciate all the kindnesses of family and friends and total strangers who supported us along the way, whether in thought or in deed.

I don’t know what the purpose was in all the stuff that happened to us, but I do know the lesson. and that’s just to hold on with everything you have to the time with loved ones you have, because no amount of money will buy any more of it. And now, for the rest of the verse. Peace & Prosperity to you.

To every thing there is a season, and a time to every purpose under the heaven:

A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;

A time to kill, and a time to heal; a time to break down, and a time to build up;

A time to weep, and a time to laugh; a time to mourn, and a time to dance;

A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;

A time to get, and a time to lose; a time to keep, and a time to cast away;

A time to rend, and a time to sew; a time to keep silence, and a time to speak;

A time to love, and a time to hate; a time of war, and a time of peace.

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A New Chapter Begins

Today is the first day of my new job, and a new chapter in my life. I officially start work today as the Massage Division Director of Soothing Touch. I’m very excited to be joining the Khalsa and Bird families, who became the owners of the 30-year-old company in 2006.  My duties are going to be representing Soothing Touch at state and national conventions and education conferences, and visiting massage schools all over the country. It’s going to be an exciting time and a learning experience!

I’ve written more than 300 blogs in the past 8 years, and for most of that time, I’ve focused on the politics of the massage profession. There’s always something swirling on a state or national level, and it’s been a task to keep up with  the good, the bad, and the ugly. I’ve stepped on a few toes, received angry phone calls and emails from the leaders of the organizations when I’ve written something they didn’t like, and had plenty of comments from people who disagreed with me. As Jerry Garcia said, what a long, strange trip it’s been.

I’ve taken a break from blogging over the past few months because my husband was in a serious health crisis. One of my last blogs was about the stress of being a caregiver. The entire experience of his survival from stage IV cancer and an aneurysm took a big toll on both of us. I am happy to report that he was pronounced cancer-free a few weeks ago, and he’s on the mend. He lost a lot of weight and is still way short of the energy level he had before his illness, but he’s slowly getting there.

This opportunity to work for a company that I have the highest regard for is a blessing, and something I just couldn’t pass up. I met Gurukirn Khalsa a few years back in Miami at the Extreme Massage School Makeover, which was the brainchild of Angie Patrick of Massage Warehouse, and one of the greatest events that ever happened in massage. We struck up a conversation and I told him the story of my conversion to Soothing Touch products. When I was in massage school, the school used (and sold) a particular brand of massage creme, and I had stuck with that for ten years. I was at a national AMTA convention when I won a gallon of Soothing Touch. My first thought, when I put some in my hand, was that I had wasted a lot of years using the wrong thing. Since that day, I’ve never used anything else. Over the past few years, I’ve attended the FSMTA convention a few times and worked in the Soothing Touch booth with the Khalsa family. I’m thrilled to death that they’ve asked me to come on board full-time.

Champ and I have owned a massage and chiropractic clinic in our little town for the past 13 years. We’re not giving that up. Fortunately we have a great staff that carries on pretty well whether I’m there or not. Champ, who is also a licensed massage therapist, is retiring from carpentry, which he’s done for 45 years. He is easing into working at the office. I’ll be traveling a lot, and setting up another office for myself in our building, away from the front desk, but still close by. It’s the best of both worlds.

I’ll still be writing occasional blogs, and if something earth-shaking happens in the massage profession, I’ll still report that when I have the time, but after 8 years of it being one of my priorities, it’s moving down the list. I’ll probably write some about the places I go and the people I meet. I’m expecting my job with Soothing Touch to be fun, which has always been a priority for me. When you enjoy what you do, and you get up every day looking forward to going to work, that’s one of the best things you can hope for. I’ve always said that the day I don’t enjoy my work anymore will be the last day I do it. I’m very pleased to be going to work for a company that is family-owned and operated, because I know they’ve put in the blood, sweat, and tears it takes to survive and thrive in business. I’m pleased to go to work for a company that is environmentally-conscious, and has recently had their manufacturing facility Certified Organic by the New Mexico Department of Agriculture. I’m pleased to go to work for a company that supports the causes of US veterans and wounded warriors. I’m pleased to go to work for a company that makes superior products, and wants to keep them as affordable as possible. I’m just pleased all around. It’s a new chapter in my life, and I’m looking forward to it.

If you’d like to know more about Soothing Touch products, contact me at laura.allen@soothingtouch.com or call 505-820-1054 Ext 124.

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Arkansas Massage Therapists: Be(a)ware

The state of Arkansas has more massage legislation going on than you can shake a stick at.  Here’s a quick recap of this legislative bonanza:

AB 145 would dissolve the Arkansas Board of Massage Therapy and transfer duties to the Department of Health, effective Oct. 1, 2015. This has passed both the House and the Senate and been sent to the Governor, and it’s almost a 100% certainty that licensing massage therapists is going to be turned over to the DOH. It’s beyond incredible to me that the current board members apparently did not protest the dissolution of their Board. However, from the mess that they seem to be in, perhaps the Board members felt it’s best to just go along with the change. Unfortunately, in the past few years, the Arkansas Board has apparently been on a downhill slide with their finances.

According to past Board member Susie Byrd, the current board took power in ’09 when Byrd left. At that time, there were 3550 therapists, two people running the board office, and an annual budget of $74,5000. Marilyn Graham was hired as the Executive Director in ’09. As of 2014, 5 years into Graham’s tenure, there are 1990 therapists, four people in the board office, and an annual budget of $248,000. According to Byrd, when she departed from the the Board, the Board had $250,000 in reserves. That $250,000 has been spent, and according to Byrd, Graham has asked for an additional $60,000 twice in the past year. The Dept of Finance and Administration told the board they had to either fire two people or raise fees, and that the legislators would not grant a fee raise. Considering that Arkansas has lost so many licensees, while doubling their staff and moving to bigger, better offices, their spending definitely seems out of control, and it’s no wonder the state feels compelled to do something.

Derick Corbin, a massage therapist in Russelville, Arkansas, has used his social media pages to try and rally the troops to get in touch with their legislators to prevent the dissolving of the Board, but I am almost certain that due to the mismanagement that has been allowed to go on for the past 5 years, it will in fact be dissolved. Corbin initially brought these legislative issues to my attention. He confirms that the present Board has allowed Graham to run the agency unchecked and unmonitored and believes that has caused the insolvency. When he first contacted me about it, I suggested that the Board needed to reach out to the Federation of State Massage Therapy Boards, who helps guide member Boards in situations like this. Unfortunately, this administration also saw fit to drop their membership in the Federation. Corbin states that the previous Board was comprised of honest, hardworking people. As he truthfully pointed out to me, the burden is on a Board to oversee an Executive Director, and to question it when finances (or any other executive decisions and actions) seem improper. It looks like this Board should have been asking some hard questions long ago, and didn’t, or they wouldn’t be in this mess right now.

I read all the minutes from Board meetings that appear on the website. Donna McGriff, a former Board member who has served three different tenures on the Board, told me that she and Byrd had repeatedly asked the Board to require a review of Board finances in the meeting once per quarter. According to McGriff, that never happened, and there is no mention of it in any meeting minutes.

AR: HB 1729 will require all boards to be subjected to a sunset review every 12 years as of 2017 by a Sunset Review Committee. The Committee will also review board finances.  I’d be very interested to see a detailed accounting of the past five years myself.

AR: HB 1589 would have exempted Bowen Therapy/Technique practitioners from licensure requirements for massage therapists. This bill was defeated yesterday and is just waiting on the Governor’s signature.

AR: SB 546 eliminates  a former requirement of a  general education development and changes  the requirement to a high school diploma or high school equivalency diploma approved by the Department of Career Education and is just waiting on the Governor’s signature.

AR: HB 1562 changes the requirements for CE hours for instructors to 250 CE hours, requiring the 125 hours for a master massage therapist license (only 18 are allowed to be taken online); Master Massage Therapist licensure requires 125 CE hours (with no more than 10% online); adds human trafficking, sexual misconduct, and lewd behavior to reasons for license denial and revocation; provides exemption from licensing for cosmetologists and Bowen Therapy practitioners (the Bowen exemption was defeated yesterday on a separate bill), if they are certified by a professional organization or credentialing agency; adds new sanitation requirements; requires massage schools to maintain board licensing examination pass/fail rates and includes the provision and that if a school has a pass rate of below 75%, the board can place the school on probation; requires massage therapy clinics and spas to register with the board; provides policies for probation and addresses military active duty considerations, and is just waiting on the Governor’s signature .

According to Byrd, 4 schools were previously given probationary status because of low pass rates, and three of the four school owners went screaming to the legislature that the Board members had a vendetta against them. One of them only had a 50% pass rate–actually up 2% from the 48% they had a few years ago. That’s pitiful, in my estimation, and I can’t imagine spending my money to attend a school with that kind of record. Any school can experience a temporary setback for a number of reasons–incompetent instructors, management changes or upheaval of some sort–but a school consistently having that low a pass rate ought to be out of business altogether, if they can’t get up to snuff within a probationary period. If they can make a case for why they’ve had a short-term lapse in pass rates, that’s one thing, but just being allowed to carry on permanently with that kind of rate is beyond the pale.

I’ve seen it happen time after time that when some detrimental legislation gets passed–many times directly due to the failure of people to contact their legislators to express their concerns and ask them to vote the other way–within a few weeks people will start calling me or asking on social media what to do. I applaud Byrd and Corbin for trying to motivate massage therapists to take action,and applaud those therapists that did take action. I’d like to be proven wrong here, but I fear the Arkansas Board is going down the river. Those of us who have been around for awhile will recall when a previous director, now deceased, almost single-handedly bankrupted the National Certification Board for Therapeutic Massage & Bodywork. Board members–on any board–need to keep in mind that they are charged with running a board in a fiscally and ethically responsible manner, and that includes questioning the decisions of an executive director, and intervening before things deteriorate to the point they have deteriorated here. This Board is one of the oldest massage boards, formed in 1952. To see it lost in this way is a travesty, and one that could have been prevented.

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Caregiver Syndrome

My husband was diagnosed with Stage IV cancer a few months ago. Last Friday, he had the last of his 35 radiation treatments. Two days ago, he had the last of 6 chemotherapy treatments.

A few moments ago, I Googled “caregiver syndrome.” I wasn’t sure whether or not that actually existed, but I figured I was suffering from it if it did. It does, and I am. According to CNN, the symptoms are depression, anxiety, anger, and declining health. Let’s throw in exhaustion and fear while we’re at it.  While this condition is also referred to caregiver burnout, it didn’t take me any time at all to get burned out. Except for the exhaustion, it was all there for me as soon as I heard the word “cancer” and my husband’s name in the same breath. Within just a few weeks of starting to navigate the cancer maze, exhaustion did in fact set in, and I haven’t had time to get over it yet. It will be three months before the next PET scan to see if the cancer is really gone.  I don’t think my depression, anxiety, and anger are going to magically disappear in the next day or two.

As for my own declining health, I have been suffering greatly from A Knot in the Pit of My Stomach. I don’t think that’s an actual medical condition, but it’s been real to me, accompanied by chronic diarrhea, and by chronic I mean a dozen times a day, with intermittent bouts of nausea when Fear Takes Over. I diagnosed myself with Irritable Bowel Syndrome, although I tried to jokingly think of it as Scared Shitless Syndrome. There’s nothing like hearing that the love of your life is seriously ill and knowing that he might die.

Yes, it made me depressed, anxious, and angry. I am not the crying type. I have gone years at a time without crying over anything, but in the past few months, I’ve probably shed more tears than I have in the rest of my life all put together. I’ve been angry…angry that Champ had cancer, and angry at the insurance company for jacking us around, and angry that people who are already under stress have to have the added stress of dealing with them.

I’ve been paranoid that he wouldn’t get well. I’ve been paranoid that we wouldn’t have enough money to survive the experience. I’ve been paranoid at little things. For instance, naps. For our whole life together, my husband would often come home from work, sit down in his recliner, and take a nap. It was just his habit. But after he was diagnosed, if I came home and he was taking a nap, in my head I would be going “Oh my god, he’s taking a nap! Is he sick? Is he okay? Is he breathing?” I know it’s ridiculous, but I couldn’t help it.

And in the meantime, the world kept turning. Work had to be done. Business had to go on. Deadlines had to be met. Bills had to be paid. Appointments had to be kept. All together, Champ has had a total of 7 doctors involved in his treatment, which was complicated by his life-long condition of having extremely low platelets. Since his initial diagnosis, he has had a total of 75 doctor visits, and I have accompanied him to all of them except two radiations and one platelet transfusion.

I’ve always believed that helping someone else is a good way to get your mind off your own troubles. I started a Cancer Caregiver support group, for the also-selfish reason of having others who were going through what I was going through to talk to. I also got some anti-anxiety medication, but after reading all the side effects, decided not to take it. We’ve gotten a lot of comfort and support from friends and family, and from FB friends. One friend, who is a long-time cancer survivor herself, called Champ one day and said “I just wanted to call and say this is not all about you. Your wife is going through a lot, too, and you need to understand that. ”

Caregiver syndrome is common among those who are caring for their elderly parents or other family members with dementia and chronic diseases. It’s very easy  for other people to say “You have to take care of yourself. You have to make time for yourself.” That’s all true, but there were weeks when that was a joke, and I know the other caregivers out there know exactly what I mean. Since my husband’s medication was causing him to nap all day, he didn’t sleep at night. He kept me awake at night, and I would be exhausted during the day when I was trying to work. I would literally be ready to go to bed at 7 pm because I was just so tired. On the few occasions when I could squeeze in a massage, I just passed out cold on the table. Playing music is my stress relief, and I had some months of not being able to do that due to nerve damage in my hand. That was depressing to me on top of everything else, and I just wanted to stay in bed and cover up my head, or drink myself into oblivion.

When the sick person has to stop working, their disability insurance may not be any where near the amount of money they were used to making, and while insurance may be covering the sick person’s care, there are still deductibles, out of pocket expenses, over-the-counter drugs, various things that insurance will refuse to pay for that you end  up having to pay yourself, special foods and/or supplements, travel to and from doctor’s appointments, and the like that can be overwhelming. You may think you’re saving for retirement, but if your retirement plan doesn’t contain built-in accommodations for a sick family member that you may have to act as the caregiver for, you can be prepared to see a lot of money circling down the drain. Being a caregiver is not a disability, and neither your own insurance nor unemployment insurance is going to be there to help you. Caregivers frequently either have to miss a lot of work, or give up their jobs altogether, in order to provide care. If you’re self-employed, like I am, and you actively work in your business, you may have to pay someone to take your place, like I  have.

So yes, as a caregiver, you do have to take care of yourself, and that’s hard to do when your focus is on taking care of someone else.

I personally found out that what I needed more than anything was just help with every day things, and I think that’s probably true for everyone. A caregiver will appreciate someone cleaning their house, or doing their laundry, running errands for them, or bringing them a home-cooked meal. Some caregivers might appreciate having someone give their patient a ride to doctor’s appointments. Although people offered to do that, I personally did not want that because I wanted to be there for all of my husband’s appointments. Unless the caregivers you know are independently wealthy, gifts of money, prepaid credit cards, or gift cards to gas stations, local grocery stores, restaurants, or stores are always welcomed. A gift certificate for a massage, or a night away in a hotel–even a local one–is a good gift. Volunteering to stay with the sick person for a few hours, if they need constant attendance, is a good idea.

One complaint that I hear repeatedly from other caregivers is along the lines of  “My sister/brother never helps with my mother.” If one of your siblings is caring for your parent(s) or another sibling, and you haven’t been physically participating in that, then you need to do something else to help, instead of leaving it all on your siblings to deal with. Help them financially, or get off your butt and go spend the weekend doing what they do all the time, or pay for a home health care service to do it, so they can have a break. If you haven’t personally been a caregiver, don’t say “I know how it is.” No, you don’t. You don’t have any idea.

I have been very fortunate that my husband has maintained such a beautiful attitude during this entire ordeal. He took it all like the Champ he is. He has always appreciated me and always shown that, and this experience brought us even closer together. It was just six months ago that he was acting as the caretaker for me, when I was very sick with double pneumonia, a UTI that went systemic, and a gall bladder that needed emergency removal. That’s what we do, we take care of each other.

I expect that I am going to continue to have anxiety until his PET scan comes out clear. And the doctors have said he’ll continue to be regularly checked for the next five years. My depression is situational, and I hope to feel better myself as I see him feeling better and better. I’ll probably remain angry at the insurance company, and have to continue spending my time dealing with them. Based on some of what I’ve had to go through with them, I feel sorry for sick people who don’t have a witch like me in their corner to advocate for them. Our almost-daily doctor appointments are over now, so hopefully I will start feeling less exhausted.

I appreciate all the support, encouragement, cards and letters, gifts, and prayers and well-wishes that we’ve received. It has meant a lot to both of us, and were it not for that support, my caregiver syndrome would probably be a lot worse than it has been. Thank you all. And please, do whatever you can to help the people in your lives who are caregivers, and if you are the caregiver, don’t be afraid to say “I need help.”

 

 

 

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Priorities

I’ve been writing about the goings-on in the world of massage since 2007, reporting on what’s going on with regulations, the associations, scams and so forth, along with a healthy dose of my opinion about it. I’ve written somewhere in the vicinity of 300 blogs (my whole blogroll is on Massage Magazine’s website). I’ve slowed down lately. There are always things going on in the massage profession that are news-worthy, and I’m not hanging it up on the blog, but I am taking a little break.

Around the first of December, my husband, Champ, was diagnosed with Stage IV cancer in his tonsils and three lymph nodes on his neck. Our life was changed in the blink of an eye. I now think of it as BC (Before Cancer) and AC (After Cancer). Our life revolves around his treatment. He’s getting radiation 5 days a week (today ends week #3 out of 7 weeks the doctor has planned). Today he’s getting chemo #2 and the doctor has not yet made the final call on how many he’ll be receiving. Maybe as few as 4, or as many as 7. We’ll cross that bridge when we come to it.

Champ has a life-long platelet condition that complicates things. Most people have a platelet count of between 150,000-400,000. His are normally less that 20,000. They have been as low as 3,000. Right now, thanks to a platelet-building drug called Promacta, they’re up to about 40,000. Chemo knocks platelets down, so they’re monitoring his blood a couple of times a week to make sure he can withstand the chemo.

I’ve spent a lot of time on the phone with the insurance company. They want you to have pre-approval to sneeze. They want all referrals to come from the person they think it should come from. They want to get out of paying whenever possible. I’m not taking that lying down, and it’s time-consuming and stressful. Nothing, however, prepares you for the stress of seeing the love of your life sick with a life-threatening disease. I lie awake at night and worry. Then I’m tired during the daytime. I cry. I stress over things that are beyond my control, and I have frequent meltdowns. Our friends and family have rallied around  and the emotional support is invaluable. It has spurred me to start hosting a Cancer Caregiver Support Group at my office, and to start a campaign to provide cancer caregivers with free massage.

Champ is getting the best of care. Janet Powell, Nurse Practitioner; Dr. Patric Ferguson, ENT; Dr. Zvonimir Milas, Surgeon; Dr. Mary Ann Knovich, Director of Blood Disorders at Levine Cancer Institute; Dr. Diego Pavone, Surgeon; Dr. Jeffrey Roberts, Oncology Radiologist, and Dr. Matt Rees, Oncologist/Hematologist, are all involved in his care. The nurses are wonderful. Everyone has moved as quickly as possible to take care of his needs.

So at the moment, my priority is seeing my husband get well. If something earth-shaking happens in massage-land, I usually mention that on my Facebook page, which you’re welcome to follow. We really appreciate all who have sent us messages, cards, called us on the phone, offered us food, financial help, prayers and well-wishes. Thank you all.

A lot of people have asked me if I have set up a gofundme page or something for Champ. I have not, and it isn’t that we don’t need help, but people were kind to us to donate to the silent auction that was held for me and send contributions to us last fall when I was the one who was sick, and I haven’t wanted to take advantage of people’s generosity.

Another thing has hit home to me since Champ has been sick, and that is the amount of stress that caregivers are under. Every morning when I go with Champ to his radiation treatments, I talk with the other caregivers who are in the waiting room. They are all in the same boat I am, trying to navigate the cancer maze, while dealing with fear, uncertainty, and the misery of seeing their loved ones sick. I want to offer them all a free massage, and I can’t. I am usually the receptionist/maid/laundry person at our office, and I have missed a lot of work and had to pay someone to do that while I go with Champ to all his appointments, and needless to say he cannot work right now, either. It has been a strain. So I have had the idea that instead of a gofundme, I would ask people to buy a gift certificate from our business for a cancer caregiver. The profit will help me pay for the people who are covering the office, and we’ll be able to provide some massage for people who need it. If you feel led to contribute to that, you can go to our online gift certificate. In the area that says recipient, put CANCER CAREGIVER and for the email address, put therassage@bellsouth.net. If you’re a local person, please consider giving a gift certificate to any cancer caregiver (or other caregiver) you might personally know. We appreciate the support, and we appreciate the emotional support. Thank you so much. https://thera.boomtime.com/lgift.

To those who are going through the same thing, don’t go through it alone. Join a support group–or start one. I’ve had to let go of some things. The world isn’t going to come to an end if my house isn’t clean, or if I don’t make it to the Chamber of Commerce meeting, or if the paperwork is piled higher than usual at the office. At the end of life, no one is going to wish they had spent more time cleaning or working. We will all wish that we had spent more time with our loved ones. That’s my priority.

 

 

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Board Certification: Just Do the Right Thing

In my last blog, I was critical of the fact that  the NCBTMB‘s new Board Certification exam has been adopted by VA and CA for licensing purposes. I have heard through the grapevine that Oregon intends to do the same, but nothing is on their website to that effect yet.

After the blog was released, I was contacted by the NCBTMB’s CEO, Steve Kirin, and Board Chair Leena Guptha, who were upset with my criticism and wanted to set the record straight. Kirin sent me a timeline of the events leading up to the acceptance of the exam by the states, stated to me that the NCBTMB had no prior knowledge that it was going to happen, and that they notified the FSMTB as soon as these developments came to their attention. I appreciate that they contacted me. I appreciate that they notified the Federation; it was the right thing to do.

They also stated to me that the NCBTMB has no control over the state boards, and that’s very true; the NCBTMB is not a regulatory agency, and has never been one.

However, the NCBTMB can and should take control of this situation by putting some controls in place with Pearson Vue, the vendor that administers the exam, and I stated this directly to Kirin and Dr. Guptha during our conference call.

Board Certification was introduced as “the highest voluntary credential attainable to massage therapists and bodyworkers in the profession today. Board Certification demonstrates a much higher level of achievement beyond entry level licensure—including completing more education, hands-on experience, and a background check—that will be a differentiator for you as you advance through your career, especially in a time where health care and other pivotal third-party professions require Board Certification in order to fill stable and rewarding positions.” From the NCBTMB’s website, here are the qualifications:

  • Pass the Board Certification exam
  • Complete 750 hours of education*
  • Complete 250 hours of professional hands-on experience**
  • Pass a thorough national background check
  • Maintain a current CPR certification
  • Signed commitment to the NCBTMB’s Standards of Practice and Code of Ethics
  • Signed commitment to opposing Human Trafficking

It’s my opinion that the NCBTMB should put the policy in place that if a candidate wants to take the Board Certification exam, they should have to demonstrate proof that they have completed the other requirements. VA and CA both require 500 hours of education, and in fact, as is the case with the MBLEx, people can take it while still a student. That does nothing to indicate advanced practice.

I became Nationally Certified in Therapeutic Massage & Bodywork in 2000, and I have maintained it ever since. I transitioned to Board Certification when the new credential was introduced. I allowed it to expire a couple of weeks ago, after these new developments came to my attention. My own state, NC, is also a 500-hour state. The school I attended was 525 hours, and in the past 15 years, I have taken more than enough continuing education to meet the 750-hour requirement. And that’s my complaint: I’ve met the requirements. It is just my opinion that allowing people who have not met those requirements to take the exam is minimizing this credential.

This is easily fixable. No, the NCBTMB cannot control the states. But they can control what happens to their credential, by the simple act of having applicants submit proof of meeting all the other the requirements to the NCBTMB, and then issuing them permission to test.

The NCBTMB’s agreement with the FSMTB put the NCBTMB out of the licensing exam business. While I appreciate the fact that the NCBTMB had no prior knowledge of what happened with the exam (and will continue to happen, if the controls aren’t put in place), I urge them not to sit on their hands.  I am dismayed that this happened at all, because if the stipulations had been put in place to begin with, this situation could have been avoided. I implore the NCBTMB to just do the right thing. Seize control of your exam, if you really want it to mean anything above being an entry-level licensing exam.

 

 

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Exam Wars: The Sequel

As I reported in my blogs of October 3 and October 20, 2014, FSMTB and NCBTMB reached an agreement where “…NCBTMB will no longer provide examinations for licensure purposes and will now focus exclusively on delivering quality certification programs.” That’s a direct quote from the joint press release issued by both organizations.

In the wake of this news, cheers were heard ’round the profession, as it signaled an end to the ugly and costly “exam wars” between the two organizations. In case you forgot, NCBTMB darn near bankrupted itself trying to fight the FSMTB and their upstart licensing exam. The fact is that the Federation offered the better testing solution for state massage boards, and the profession has migrated to the MBLEx – leaving NCBTMB with ever-shrinking exam revenues.

With so few people taking their rebranded National Certification exams for state licensure, NCBTMB was compelled to strike a deal with the FSMTB to throw in the towel in exchange for some amount of money. And we don’t know how much cash, because the terms have not been made public. As part of this agreement, NCBTMB said it was going to stop taking new applications for its National Certification Exams on November 1, 2014, and will cease administering these two tests on February 1, 2015.

Sounds like we’re finally moving towards the single licensing exam solution for the massage therapy profession, doesn’t it? Well, don’t head for the lobby to get your tub of buttered popcorn yet, because the next installment of Exam Wars is heating up!

NCBTMB may be bringing down the curtain on the two National Certification exams, but they are now reported to be offering their Board Certification Exam for state licensure purposes. Doesn’t that fly in the face of the agreement with FSMTB?

In October 2014, the Massage Therapy Advisory Committee of the Virginia Board of Nursing voted to accept NCB’s Board Cert exam to meet their statutory certification requirements (in place of the sunsetting National Cert exams). On December 11, 2014, the California Massage Therapy Council voted to accept NCB’s Board Cert exam, along with the MBLEx and the two NCB National Cert exams taken before 2/1/15.
If that weren’t bad enough, NCBTMB is now allowing people to take the Board Cert exam BEFORE they have met all eligibility requirements for Board Certification. Since NCBTMB is touting it as the “highest voluntary credential attainable to massage therapists and bodyworkers in the profession today”, this policy cheapens the credential. It’s already a stretch for NCBTMB to make these claims, but their use of the Board Cert exam to stay in the state licensure game is a real howler. In fact, I think it cheapens it to the point that I will not renew mine in a few days when it expires. I don’t have anything to prove. And after 15 years of practice, I am not going to spend my money to maintain a voluntary credential that is supposed to indicate you are an advanced practitioner that someone fresh out of massage school is being allowed to get. It doesn’t say anything about my knowledge and years of experience at all. It’s apparently turning into just another entry-level credential instead of what it was designed to be, and that truly distresses me.

Are NCB’s actions in violation of their agreement with FSMTB? That may have to get worked out between the attorneys for each side. Whatever the agreement actually says, we’re headed right back to the same old conflicts between FSMTB and NCBTMB. And we didn’t even have to wait long for the Sequel!

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An Interview with Paul Ingraham

A few years ago, I came across a website that has become one of my favorites. It’s at www.PainScience.com, and the writer behind it is Paul Ingraham.

Ingraham is a former Registered Massage Therapist from Vancouver, Canada. He practiced for ten years in downtown Vancouver, taking as many difficult chronic pain cases as he could. Since 2009, he has been the assistant editor for ScienceBasedMedicine.org. I recently had the chance to ask him a few questions about his life and work:

LA: Paul, one of the reasons I find you so interesting is because we share the circumstance of formerly being into energy work, and all sorts of things along those lines that we no longer embrace. Was there a defining moment when you decided to leave that behind and become the skeptic you are today?

PI: It was a series of defining moments, a gradual process, many things chipping away at my faith. For instance, I had a colleague who I shared some beliefs with. We both did energy work and talked shop about it. For me it was more like art and poetry, while for him it was much more literal and real, like he thought he was a Jedi in training or something, and he shredded his credibility with increasingly bizarre belief and overconfidence — like healing over the phone — until I one day I thought, “Wow, way too far. That is just not quality thinking!”

There were many more little disappointments like that over the years. Some were bigger. I remember a workshop taught by someone I greatly admired. I went in beaming, but came out rolling my eyes — a whole day of fringe science and sloppy, self-serving “logic.”

When I started questioning this stuff publicly, I got hate mail, even about stuff I thought was no big deal to question. And that finished the job. Seeing a steady stream of incoherent arguments from unhinged true believers — never calm, never gracious, never “balanced” — finally turned me into an actual card-carrying skeptic. It took about a decade to go from true believer to doubter to curmudgeonly skeptical gadfly.

LA: For years, your website was known as SaveYourself.ca. What precipitated your recent name change?

PI: PainScience.com is more serious and dignified. And just more descriptive of what I do.

I never really cared for the connotations of “save.” Some people immediately think of Jesus when they think of being saved. And I didn’t want to imply that anything I write can “save” anyone — it smacks of the same kind of unethical over-promising that I often criticize in health care.

PainScience fits great. It feels like putting on a nice suit after years of doing business in a Hawaiian shirt.
LA: I’ve seen a few snarky comments from people on the Internet concerning the fact that you’re not a scientist, but you write about science. What are your qualifications, and what do you say to your critics?

PI: Yes, that comes up a lot. And they’re half right: I am not a scientist! But of course hardly any science news and reporting comes directly from scientists, and it can’t, because scientists are busy doing their jobs. And hardly anyone outside of science actually reads scientific papers (least of all the kinds of people who complain that I’m not a scientist).

I am a writer, and my job is to understand and translate science as well as I possibly can — to be a liaison between scientists and clinicians and patients. It’s a tough job, but I care deeply about it and work my hind end off to do it right.

Information about the implications of science can and should only be judged on its own merits. It doesn’t matter who wrote it. Is it good? Is it reasonable and referenced?
LA: One thing I have always admired about your writing is that you provide footnotes for everything. How much time do you spend researching and preparing an article?

PI: It never ends! I never stop editing and upgrading articles, because science is a moving target. They need to change. This is a distinctive thing about PainScience.com: I don’t publish stuff and then just leave it there to rot on the server forever.

But a first draft of a typical 2500-word delve into a topic is usually about a 40-hour project, assuming I’m really going for it. The main way to distinguish yourself online these days is quality. You can’t just write a lot — you’ve got to write well. Serious polish. So I really get into making an article as good as I can possibly make it. It’s not unusual to thoroughly edit at least five or six times.
LA: Like my own blog, some of your articles have generated controversy and even gotten you some hate mail. Is there an article that stands out in your mind for that?

PI: By far the most hate-mail generating article I’ve ever published is Does Chiropractic Work? The modern version of it is more diplomatic and generates much less hate mail, while the original was somewhat snarky and made a lot of heads explode. But I still stand behind any statement I ever made there.

But the most interesting hate mail generator is this one: Trigger Point Doubts. It doesn’t generate a lot of hate mail, but some people just go bonkers when they think they’ve caught me in a contradiction. That is, criticizing “trigger points” while also selling a book about trigger points. Even though the article tackles this so-called contradiction head on. And of course it’s very intellectually healthy to question your own ideas. But I get mail from people who are just furious with me: they take me for a trigger point guru and then freak out when they find out I have concerns about trigger point science being half-assed.

LA: Painscience.com gets about 30,000 hits a day. I notice there’s no advertising on your site, but my guess is you’ve been offered plenty of deals; is that so? What’s your reason for running an ad-free site?

PI: I just like it better. Classier. Different than most of the rest of the internet. And I can generate enough revenue with e-book sales.

LA: You’ve written quite a few e-books. What is the focus of those?

PI: So far I have written eight books about eight musculoskeletal pain problems that are often puzzling and stubborn, like patellofemoral pain or chronic low back pain. The goal of the books is to explore the puzzle with the reader, who can be a patient or a professional: to dive into the interesting mysteries and try to figure out what works, what doesn’t, and why. My goal is to simply teach the reader as much as I possibly can about the condition. In the absence of proven treatments, good information is the next best thing.

LA: What’s the most gratifying thing about what you do?

PI: Oh, that’s easy: email from people who like my sense of humour! Best people in the world! Or librarians who recognize the mad genius of my bibliography.

But seriously, of course it’s the readers who feel that something they learned from me has really helped them. I do love that. That’s the whole point.

LA: Is there anything you haven’t accomplished yet that you plan to do? What’s next for Paul Ingraham?

PI: Lots! It’s taken me a few years to get PainScience.com going and prove that it can pay the bills. I’ve had to do a lot of technology work to get it to that point, which often distracted me from writing in a big way. Now it’s time to get back to the writing, and lots of it, both professional and personal. I’d like to get going on my first novel. And some other technology business projects with a genius buddy of mine, for the diversification and fun of it. Going to be a busy couple decades!

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Deal, or No Deal?

In my last blog, The Good, the Bad and the Ugly, I reported that the only good thing that came out of the recent FSMTB Annual Meeting was the announcement that NCBTMB and FSMTB had reached an agreement on licensing exams, which promised to spell the end of the long “exam wars”. FSMTB trumpeted this news in their October 3rd press release, which stated:

“FSMTB and the NCBTMB have worked cooperatively to reach an agreement that the NCBTMB will no longer provide examinations for licensure purposes and will now focus exclusively on delivering quality certification programs. This supports the common goal of the FSMTB, Associated Bodywork and Massage Professionals (ABMP), American Massage Therapy Association (AMTA) and the Alliance for Massage Therapy Education (AFMTE), for the Massage & Bodywork Licensing Examination (MBLEx) to be utilized as the sole licensure exam for the profession, thus facilitating licensure portability for therapists.”

Too bad that we really can’t celebrate this news because the so-called “agreement” did not include the Approved Continuing Education Provider Program operated by NCBTMB (which 27 state massage boards use in one way or another). Like rubbing salt in the wound, the FSMTB turned right around and passed a resolution to create their very own CE approval program–as if NCBTMB didn’t exist.

It actually gets worse. I received word that at last week’s Florida Board of Massage Therapy meeting in Orlando, it was stated publicly that there was really only a “letter of intention” between the two organizations that was signed before the FSMTB Annual Meeting, and that the details of this letter would be worked out later in a formal agreement.

Now I’m no attorney, but a letter of intention is NOT the same thing as a legally-binding agreement. It’s more like putting a small deposit down on a house to get the process started, with the purchase contract and the mortgage money to come later. A lot can happen between those two steps.

So I’m confused here… is there a deal, or is it no deal? For the FSMTB to send out a national press release with the subject line “FSMTB AND NCBTMB REACH AGREEMENT” when no final document appears to have been signed, raises all kinds of red flags and ethical questions.

We never needed two competing licensing exams, and we sure as blazes don’t need two competing national CE approval programs. Looks like it’s time for the heads of these two organizations to get back to the negotiating table and work out the rest of this deal, for the benefit of the CE community and the profession as a whole.  And don’t come out until you get it settled!

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