Who Takes Care of YOU? Winter 2015 Feature

Published: LifeLines for Health, vol. 6 (Winter 2015)

By Janet Brewer, M.Ed

As I write this now in November, National Caregivers Month, I have some time to reflect on the multiple years I have spent (and still do) as a caregiver. Within our community, we are bombarded with information on factor products, maintaining a healthy lifestyle, healthcare and insurance changes; the list goes on and on. But where are the articles and information on how to manage your emotional and physical health when you are the primary caregiver of a child with a bleeding disorder and an inhibitor? It makes “just having hemophilia”, look like a cakewalk. This isn’t to depreciate their daily struggles, but what all of us would give to be back in the “just hemophilia” crowd. As we all know, inhibitors are a totally different diagnosis.

IDENTIFYING AN EPIDEMIC

“Caregiver stress is defined as the emotional strain of caregiving”1. The impact of caregiving effects us economically, physically, and emotionally. Not to mention the effects it has on our jobs and our relationships. The statistics are as overwhelming as we are overwhelmed.

The National Center on Caregiving indicates that an estimated 59%-75% of caregivers are female. Females spend 50% more of their time providing care than men. Working women caregivers are likely to suffer a higher level of economic hardship due to caregiving. Most caregivers are employed. Among baby boomer caregivers (aged 50-64 years old), an estimated 60% are working full- or part-time. With these statistics it is no wonder these women are stressed out. They are often juggling their own work schedule demands; their child’s caregiving demands and many are taking care of their elderly parents as well. This often involves using personal days, sick days or vacation time to schedule appointments or when their loved one is in need of treatments or if they are ill (if they are fortunate enough to have a job that provides paid time off). Working women caregivers may suffer a particularly high level of economic hardships due to their caregiving.

The impact on the physical and mental health of the caregiver takes its toll.1 A number of studies have found that female caregivers are more likely than males to suffer from anxiety, depression, and other symptoms associated with emotional stress due to caregiving. As many as 20%-50% of caregivers report depressive disorders or symptoms. Caregivers use more prescription and psychotropic drugs than non-caregivers.1

While researchers have long known that caregiving can have deleterious mental health effects for caregivers, research shows that caregiving can have serious physical health consequences as well. Studies have shown that caregivers may have increased blood pressure and insulin levels, may have impaired immune systems and may be at increased risk for cardiovascular disease among other adverse outcomes.

HITTING CLOSE TO HOME

Reflecting on these statistics leaves me not only staggered, but all too aware that care-giving is now a big part of my identity. Do these statistics sound all too familiar to you? Has caregiving now become your identity? When we have children, our identity is forever linked with our child’s, “Oh, you’re Robert and Edward’s mom.” Our endless “To Do” List looks like anyone else’s, until you add a chronic illness. We are in serious caregiver stress territory. So a show of hands please (be honest now):

Do you put off your own health and emotional needs to care for a loved one? Studies show that by doing this we often end up feeling angry, isolated, and anxious.

• Do you have problems sleeping or want to sleep all the time?

• How are your eating habits-have you lost or gained too much weight?

• Are you tired or feel like you have no energy?

• Have you lost interest in activities that you used to enjoy?1

• Do you feel the need to control all aspects of yours and your loved ones lives?

• Do you even remember the activities that you used to enjoy?

• Do you turn down offers for help, even from your family members or your partner, further isolating yourself and establishing your identity as “THE CAREGIVER”?

Many of us are well acquainted with these truths. Honest answers to these questions may help you to recognize the impact caring for your loved one is taking on you. Identifying, acknowledging, and embracing the role you play, as the family caregiver is the first step to creating a more balanced life.

Now the hard part... how do we learn to create a space where caregiving doesn’t become your reality?

Accept that your family member has a chronic disorder. Their diagnosis will affect you too and it is understandable to feel upset, angry, disappointed and maybe even helpless at times. Know that you must allow yourself to go through a grieving process as your hopes and dreams for your child or loved one is now very different than what you anticipated. It is perfectly appropriate to express these feelings and recognize that this may put a dent in your future activities, or plans. While you absorb the feelings of those around you, don’t forget to acknowledge that as a caregiver you have emotions as well and you may not be able to fix other’s feelings. And sometimes, it might be better to let them figure out some of them with someone else rather than you.

DO YOUR HOMEWORK

As the primary caregiver, you will learn unfamiliar and out of the ordinary things; like gauze soaked in black tea can help with oozing teeth. High school biology had nothing on what we need to learn! Ensure that you are aware and well- versed on your loved one’s diagnosis, severity, recommended product, as well as all product choices available to you, treatment protocols, physician/HTC information, and medical alert identification. Educate yourself, read everything provided to you and seek out more information. Search the web, find and attend support groups, educate members of your extended family so they may be a source of support for you.

Insufficient knowledge breeds fear! What we don’t understand is scary. Arming yourself with as much information as you can helps to mitigate some of the fear and allows you to take back control. Know that you are not alone; your feelings are NORMAL and try not to be afraid. Fear paralyzes us. There is hope that you can and will balance your life. Recognize that you ALSO are affected with all the same mentally, physically, socially and spiritually. The active role that you will now play in their life is truly a gift that requires openness of the mind and willingness of the heart. It is important to note that caring for another person can also create positive emotional change.

Aside from feeling stress, many caregivers say their role has had many positive effects on their lives. For example, caregivers report that caregiving has given them a sense of purpose. They say that their role makes them feel useful, capable and that they are making a difference in the life of a loved one.2

COMMUNICATE, COMMUNICATE, COMMUNICATE

Communication is the single most important way to learn anything. Communication will make a situation with no possible resolution seem easier to figure out. As the caregiver, part of your role is to communicate with your affected loved one in a positive manner. They need to know they have an outlet, but be aware of how many roles you may play in your loved ones’ life. Trying to fill too many roles are detrimental to both of you. Initially, it will be your role to explain to the doctor and other health professionals what symptoms they might be experiencing, as well as sharing your observations and thoughts. Remember to allow your loved one to express their own symptoms and care as often as possible. The medical staff is only as good as you help them to be in treating your specific disorder. If you have questions, ask. If you have a difference of opinion or information that you have learned from outside resources, respectfully share this with the physician. As the caregiver, you become the expert as you live your daily life with your loved one’s disorder. Teaching and modeling these skills for your child will allow them to become successful adults who will be better equipped to manage their own care.

The second part of communicating is to ask for what you need from your spouse, significant other, trusted friend, or family member. Try to remember that those around you care about you and in most circumstances, genuinely want to help. They won’t know what you need unless you tell them. When we are in the middle of a crisis, we don’t even know what we need. Our mind is flooded in crisis mode, making it difficult to communicate. When the dust settles, reflect on the crisis and write a list of tasks that others can do for you... Meals? Picking up other children? Someone to sit beside your child or loved one at the hospital so you can take a shower? Write these needs down or put them in a chart so that when someone asks during the next crisis (and there will be another one), you can easily hand it to them.

When we are stressed or overwhelmed, it is so easy to develop a mind set that it is easier to do it yourself rather than going through the steps of explaining what is needed. By adopting that mind-set, two negative things occur: you shut out the very people who are trying to help you which makes them feel inadequate and less willing to provide assistance in the future, and you become more angry and resentful. By opening lines of communication and letting others help you, you allow them to feel good about themselves and deepen the relationship between yourself, the other person, your loved one and your family. As Barbra Streisand once sang, “People who need people are the luckiest people in the world.”

TAKING CARE

Taking care refers to not only the loved one with the bleeding disorder, but treatment of the individual who
is caring for them. If you don’t take care of yourself, who else is going to do it? The equally important question is, if you become unable to perform the “duties” of caregiver, who is going to take care of your loved ones? The best gift that you can provide your loved one is an emotionally, spiritually and physically healthy you. “The research is very clear; the affect of stress on
the family caregiver has been shown
to affect our immune system making us more prone to chronic illness ourselves.”3

Depression and anxiety can affect our ability to not only make informed decisions, but it affects concentration, stamina and the ability to function on a daily basis. Left undiagnosed and untreated it may impact our overall desire to live. Putting yourself first is not selfish; it is self-less. The relationship and bond you have created with your loved one is one of complete trust. They trust you to always be there when they need you; taking time to do something relaxing for yourself affords you the opportunity to return more energized and relaxed. It also serves as a way for them to see you as a person beyond themselves. This in turn affects their perception of themselves.

FINDING RELIEF

So how do you work on your treatment? First and foremost –

Be flexible. Bleeds and injuries happen and they usually happen at
the worst possible moment. Holidays, planned activities, and family gatherings are the most popular times! Modeling flexibility creates resiliency in a family. If someone is laid up with a bleed and the family can’t go to grandma’s to celebrate that big birthday, why not switch the party to your house? Remember, it’s about spending time together, where you spend it isn’t important.

What lesson will they take from the party coming to your house? That family and loved ones care enough to make sacrifices for the greater good.

Keep your priorities straight. 

Is it more important that your home looks like something out of a home and garden magazine when everyone comes to celebrate grandma’s birthday at your house in our above example? No, life happens on a daily basis, which includes a house that may not meet everyone’s standards. We need to remember as caregivers not to allow our own guilt to bleed into what we think others are thinking of us. I once saw a sign that read, “If you came to see me- great! If you came to see my house, make an appointment.”

Organize your day. 

Sometimes in the most stressful of times, we look at the whole of a day and get so overwhelmed it can be paralyzing. Break your day down, if you can only get through ten minutes at a time, so be it, concentrate on getting through those ten minutes. Then, take a deep breath, pat yourself on the back and get through the next ten minutes or maybe the confidence you gained from managing those ten minutes will inspire you to tackle twenty minutes!

Banish the phrases of “What if ” or “I could/should” from your vocabulary. Dealing with what IS can be more than enough to deal with. The here and now is the reality, not what MIGHT happen or what COULD have happened or what SHOULD have happened. My children used to ask me “What If ” questions all the time when they were younger and my response was, “I can only deal with what is”. We often spend our days trying to protect our child from that next bleed, when the reality is-they bleed. Spontaneous bleeding is the reality for individuals with hemophilia and an inhibitor, so if they are going to bleed doing nothing, why not at least try to let them enjoy life a little (within acceptable limits of course!) Stressing over what we can’t control only creates more stress.

Exercise - even if it is only doing some type of physical activity for ten minutes, three times per day. There
are 24 hours in a day; we spend about 16-17 hours of them awake. How is it not possible to find at least 10 minutes for yourself in there somewhere? Hide in the bathroom. Walk through your neighborhood with your child in a stroller, wagon, or wheelchair. It will be good for both of you. Can’t get outside? Power walk through or around your house, run up and down the stairs, jump rope in your kitchen, tackle the chores you can that day with a little more zest. Do a body scan. Are your shoulders up around your ears? Teeth clenched? Muscles tight? Take those ten minutes to sit upright in a chair by yourself and mindfully will those muscles from the top to the bottom to unclench. And if that doesn’t work there is always chocolate!

There are two types of rice, and I’m not talking about the brown and white varieties.

• Loved ones need RICE when a bleed occurs.

  - Rest, Ice, Compression and Elevation

Successful caregivers need RICE too. - Rest, Inspiration, Compassion and Energy

So while they’re resting on the couch, you rest too. Pop in a movie, rock out to your favorite music, read a book, take a nap, practice yoga, mindfulness or simple breathing exercises to help you refocus and relax. (Refer to LFH Winter Volume 4: Exploring the Science of Mindfulness). Start a journal, writing down your thoughts and feelings give you the opportunity to release and let go of them. Practice gratefulness. Each day find three (3) things you were grateful for in the day. Studies show that after just one month of doing this, you will become a bit less stressed and a happier person. “I’ve been able to show that fear closes down our minds and our hearts, whereas positive emotions literally open our minds and hearts... they really change our mind- sets and our biochemistry” Dr. Barbara Fredrickson Professor of Psychology, University of North Carolina3 http://www. actionforhappiness.org

Speaking of biochemistry, don’t be afraid to seek out professional help for yourself or your loved one, or both. Whether you make an appointment with your spiritual advisor or a trained counselor, there will be times when the stress of your daily lives can and will overwhelm you. There is no shame in seeking an outside, unbiased professional to let all of those feelings out.

Anger, frustration, resentment and despair are all naturally occurring emotions as your family attempts to cope on a daily basis with the challenges of chronic illness. Sometimes it is better to discuss those feelings outside of the home where words cannot be misinterpreted. Be sure that you and your loved one are seeing different professionals or allow separate time for each person to speak privately. Sometimes, we may need more than a counselor. Remember our statistics show that 20%-50% of caregivers report depressive disorders or symptoms? Stress changes the neurotransmitters in our brains, so it would make complete sense that you or your loved one may need to speak to your doctor(s) about using a medication to treat those symptoms. Some may need it long term, some for short term. A word of caution; never go off of these prescribed medications without your doctor’s knowledge.

Find a friend. As a member of the inhibitor community you are part of one big family. Inhibitor Summits provided by NHF, Inhibitor Family Camp, Leverage and Momentum provided by Comprehensive Health Education Services provide opportunities to share, relate and have fun. Find a person or family that you connect with. Face Time, Skype, become friends on Facebook, Twitter or whatever social networking method works for you. We are living in a society that is sometimes overwhelmingly connected. Reach out. The whole process of sharing and caring is a two way street. Allow the support you receive from the community to empower you to remember that you control the bleeding disorder, it doesn’t control you!

There are numerous challenges to providing our loved one optimal care but we can be successful when we prioritize. Keeping ourselves healthy and organized puts us in a better position to care for our love ones. Therefore, by eliminating room for stress we make space for the success and rewards of being the caregiver so that it doesn’t become our identity.

ABOVE ALL ELSE, maintain a sense of humor; you won’t get through this without one! Many of us have developed some really quirky (but necessary senses of humor!) As a family that deals with chronic illness on a daily basis, you may need to dig deep sometimes to find something to laugh about. Is it possible to look back at the annual Christmas picture when your child had a black eye and shake your head and laugh?! It will just become part of your family’s norm and it makes a great story to tell! Bruises, needle sticks, infections, bleeds and hospitalizations are part of our “normal”. By taking a deep breath and finding that “silver lining in the cloud”, over time, you’ll and your loved one’s ability to cope and become resilient.

1 Source: U.S. Department of Health and Human Services, Informal Caregiving: Compassion in Action. Washington, DC: 1998, and National Family Caregivers

Association, Random Sample Survey of Family Caregivers, Summer 2000, Unpublished

2 Source: Medicinenet.com, Caregiving. http://www.medicinenet. com/caregiving/article.htm

3 Source: Action for Happiness: Take Action, Find Three Good Things Each Day. http://www.actionforhappiness.org

Inhibitor Family Camp at the Painted Turtle Milestones

Published: LifeLines for Health, vol. 7 (Spring 2016)

Written by: Carri Nease

Our family first attended Inhibitor Family Camp in 2012 when the boys were six (6) after patiently waiting since we preregistered them at the age of four (4)! We didn’t know what to expect, but we were all very excited.

After a LONG Trip, we arrived at The Painted Turtle.

This would be the first weekend we had ever walked away from our boys and not worried about them (much). The camp pairs a family with a volunteer family pal who provides a second pair of hands keeping track of the kids so that the parents can have breathing room to attend sessions while the kids can run off and participate in LOTS of activities. Camp was teaching us it was okay to let go and let someone else take over for a bit.

It felt good knowing that for the most part, camp was set up for pretty much anything we could throw at them on a normal day with hemophilia and inhibitors. Inhibitor Family Camp has only gotten better over the years since our first arrival. Comprehensive Health Education Services, with an education grant supported by Novo Nordisk, increased the camp weekend by one day, which allowed us to actually recover some from the travel and enjoy the feel of the festivities and more.

This year, we weren’t sure if we would be able to attend. Tyin was having a particularly rough time and we weren’t sure if he would be healthy enough to make the trip. He worked hard though, and physical therapy cleared him so we could make it.

Tyin walked and played more this weekend than he had in the past several months because of the activities and encouragement of friends. We had so much fun!

help of nurses Kathy Byrne and Brianna O’ Neil (who are members of CHES’ traveling infusion nursing team) and The Painted Turtle’s Well Shell staff. Tyin was able to infuse himself for the second time and Connor worked through his fear to get nearly to the point of his first stick! He actually managed to hold the needle and touch where he would have infused. This is a huge step for someone with a deep needle phobia.

Connor also performed with a camp buddy in the talent show - another huge milestone!

Registration was a bit of a challenge but it is always worth it.

As a parent attending Inhibitor Family Camp, I get the strength and support I need, both from the other parents AND from the CHES staff and The Painted Turtle staff including the Well Shell Staff.

Inhibitor Family Camp is the one event we look forward to each year where the kids are able to hang with kids like themselves. It helps them to hear that they are not the only kids with hemophilia who sometimes get multiple infusions in a day to combat a bleed. Or get stuck every day in hopes of beating back inhibitors so they can have a regular childhood. Inhibitor Family Camp is the Great Equalizer and we are eagerly looking forward to returning next year.

Despite the fact that it’s only a few short days, I leave feeling renewed and ready to tackle another year.

Inhibitor Family Camp at The Painted Turtle provided by CHES is the only “nearly guaranteed” camp we can be sure to attend in a year - health permitting.

Inhibitors, bleeds and complicated treatment protocols have made hemophilia camp through our local chapter something we can’t count on right now.

We do sign them up in hopes they can attend- but last year only one of the boys could go because the other had a bleed. I was in the ER with a disappointed child the day the chapter flew to camp.

Inhibitor Family Camp is the one event we look forward to each year where the kids are able to hang with kids like themselves. It helps them to hear that they are not the only kids with hemophilia who sometimes get multiple infusions in a day to combat a bleed. Or get stuck every day in hopes of beating back inhibitors so they can have a regular childhood. Inhibitor Family Camp is the Great Equalizer w and we are eagerly looking forward to returning next year.

Words are POWERFUL So How About Watching Your Language?

Published: LifeLines for Health, vol. 7 (Spring 2016)

by Dr. Gary McClain, PhD

Think back to the last time you had a really bad day. What was going on that day to make it so bad? And now, think about the words you might have used when you described it.

Did you really let loose with a big old rant on how bad things were? Maybe.

“I hate this.”
“This is the worst.” “It’s just awful.

Take a Step Back and Listen to Yourself

So, the first question to ask yourself: Was it really all that hateful, awful, the worst?

Now, think about how those words may have impacted the way you were feeling that day. Were you feeling optimistic that whatever it was you were dealing with, it wasn’t something you hadn’t been through before and would get through this time too? Or were you feeling like the world might just be crashing down around you, and that tomorrow might be even worse?

With words like “hate,” “worst,” and “awful,” chances are you weren’t feeling all that optimistic.

So here’s what I’m getting at:

There’s something kind of magical about words. The reason I say that words are magical is because the words we use have a very big impact on how we experience the world around us. For better, or for not so better.

I’m talking not only about the words you say to other people, but the words you say to yourself.

Think about the last time things didn’t go the way you wanted them to go. You know, one of those times that seem to come along all too often when you are living with a bleeding disorder.

And if you are a family member of someone living with a bleeding disorder, think about the words you might be using when your loved one hits a rough spot.

Think back to the words you used to describe what happened. On one hand, you might have talked in a way that implied that, while it was disappointing, it was at least something you could figure out a way to cope with, or even live with. Or you might have instead talked about it as if it was the worst thing that could possibly happen, soon to result in misery and despair.

Now, think about how the way you talked about the situation made you feel. Most likely, if you talked about it terms of possibilities, you felt disappointed/frustrated/annoyed, but not without options. But if you talked about it with words like “worst” and “awful,” you may have felt hopeless and defeated.

Take it a step further. The language you use when you talk about the challenges that come your way also affects the actions you take, or don’t take. If you tell yourself that a situation is the absolute worst thing imaginable, you are setting yourself up to view it as so insurmountable that you may as well not even try to expect anything better. And so you stay miserable and stuck.

Words are powerful!

The words we say to ourselves and the words we say to others. When you are first diagnosed with a chronic condition, and every experience is new, those words of desperation and defeat are more likely to be top of mind. But now it’s also the time to be aware of the words you are using, and try to use words that encourage you to stay optimistic. In other words, watch your language.

Here are some of my favorite words to watch out for:

The “hate” word. There’s not much to love or even like about the symptoms of a chronic condition or the medication regimen you may be learning to live with, along with the lifestyle changes. But do you hate it? Hate opens up the door to negativity, making everything a punishment when, if you look at it objectively, it doesn’t have to be. Look at it this way: How can you hate something that is helping to make you feel better?

“Living with” or “suffering from?”
This is a big one. If you’re living with a bleeding disorder, chances are you learned to face life on life’s terms, to do what you need to take the best possible care of yourself. Empowered. When you are suffering from your chronic condition, you place yourself in the role of victim, with things being done to you that you have no control over. You have a choice.

“Awful.” Using the word awful serves to put a situation in such a negative light that a set-back can feel like the world is crashing around you. That’s called “awful- izing.” Ask yourself: Is it really awful? Or is it just inconvenient? Or disappointing? Or frustrating? How you answer those questions will make a big difference in terms of the potential solutions you are able to identify.

“The worst.” This word goes hand-in- hand with “awful.” With the same impact on your outlook.

“Impossible” or “never.” Now, here’s a way to stress yourself out. Allow your mind to jump to the worst (there’s that word again) possible scenario and follow it down the rabbit hole. One of the best ways to conjure up this scenario is through the use of “impossible” or “never.” Because if a situation truly is impossible, if things will never get any better, why even try? Both of these words leave you backed into a corner with no way out. Again, as the victim. And you don’t have to be.

Talk Optimism, Stay Optimistic

Here’s how to keep your language more positive:

Choose to focus on what’s working. Not only on what’s not working. Remind yourself of what’s good in your life. Be grateful. Say it to yourself and say it out loud.

Remind yourself: I’ve been through this before. If you’re living with a bleeding disorder, or with someone who is, then this is probably not the first time you’ve felt this way. It might help to remember that you’re not in uncharted territory, and that you can get through it again.

Review your foundation. You’ve got a lot going for you. A health care team. Support. Knowledge. Coping skills. You’re resilient, right?

Get support. When you’re having a hard time, it’s all too easy to kind of shut down and get trapped in your own fears and frustrations. Reach out to someone who can listen without judgment and give you some fresh perspective.

Sure, living with a bleeding disorder brings surprises and responsibilities that you didn’t plan for. And yes, you’re not in control of everything that comes your way. But the words you use can create optimism or defeat – in your mind and in your actions. So, as your mom used to warn you: Watch your language!

Gary McClain, PhD, LMHC, is a therapist, patient advocate, and author, specializing in helping clients deal with the emotional impact of chronic and life-threatening illnesses, as well as their families and professional caregivers. He works with them to understand and cope with their emotions, to learn about their lifestyle and treatment options, to maintain compliance with medical regimens, to communicate effectively with the medical establishment, and to listen to their own inner voice as they make decisions about the future. His email is: gary@JustGotDiagnosed.com. He welcomes your questions and comments.

Medical Cannabis - The Safer Solution To Chronic Pain The Safer Solution To Chronic Pain

Medical Cannabis - The Safer Solution To Chronic Pain The Safer Solution To Chronic Pain

Published: LifeLines for Health, vol. 7 (Spring 2016)

By Dr Dustin Sulak D.O. 

Chronic pain and opiate addiction have ruined countless lives and changed the landscape of medicine.

Some patients feel let down by the medical system when they are denied effective treatment for chronic pain. Others feel injured by medical providers who have started them on opiate medications that have led to addiction and ruined their lives. Healthcare providers feel frustrated that they cannot do more to safely help patients with chronic pain, guilty for providing effective short-term treatments with harmful long-
term effects, and depleted of compassion for patients who need help.

Luckily, there is another solution that is safe, effective, and sustainable. Plus, patients can grow their own. The vast majority of medical cannabis patients use this herbal medicine to treat chronic pain.

The providers at my medical practice are amazed by the results of medical cannabis in the treatment of chronic pain. Patient after patient tells a similar story, and it goes something like this: “I cut my opiate usage drastically, I’m sleeping better, feeling happy, and enjoying my life more, all with less side effects.”

We find that whenever we see a patient who has been using opiates to treat chronic pain, after starting medical cannabis the opiate dosage decreases by at least 50% in the first week. It’s often more like a 60-80% reduction. Many patients go on to completely discontinue opiate medications over the next several months. They often reduce or discontinue other pain medications as well, including anti-depressants and anti-seizure drugs.

Scientific research tells the same story. A review article published in Life Sciences (2004) concludes, “The administration of low doses THC in conjunction with low doses of morphine seems to be an alternative regimen that reduces the need to escalate opioid dose while increasing opioid potency.” An animal study found that adding a small amount of THC increased the effectiveness of morphine by four to twelve times.

And while cannabinoids, like THC, can work together with opioids to increase potency in the pain centers of the brain, there isn’t a significant effect on the brainstem, the area responsible for decreased heart rate, slower breathing, and ultimately death in the case of an opiate overdose. This means that using cannabis with opioids is safer than using opioids alone.

Patients are starting to figure this out. A study published in the Harm Reduction Journal (2009) looked at 350 medical cannabis users, and found that 65% of them were using cannabis as a substitute for prescription drugs, 40% were using it as a substitute for alcohol, and 26% were using it as a substitute for illicit drugs. Three of the subjects used cannabis to help them quit smoking tobacco. The most common reasons for the substitution were less adverse side effects, better symptom management, and less withdrawal.

So while we all were told that cannabis is dangerous because it is a “gateway drug,” scientists are now calling it an, “exit drug” within the framework of harm reduction. The goal is to substitute a safer drug for one that’s more dangerous in patients who are unable to achieve total abstinence.

And cannabis is certainly safer than most of our current options for treating chronic pain. In 1999, the Institute of Medicine published a report that stated, “Except for the harms associated with smoking, the adverse effects of cannabis use are within the range tolerated for other medications,” and “there is no conclusive evidence that marijuana causes cancer in humans.”

Unlike opiate medications, cannabis can remain effective at a low dose for years or decades. While opiates can numb the pain and disconnect the mind from the body, increasing risk for inappropriate activity and re-injury, cannabis often does the opposite. Patients report that after using cannabis, the pain is still there but is less intense, less bothersome, and they no longer have to dwell on it. They often feel more connected to their bodies because they no longer have to retreat from the pain. Patients feel able to reclaim their lives from the constant focus on pain.

Cannabis does not have to be smoked, as many patients are using tinctures (liquid extracts) and vaporizers (smoke-free inhalation). Certified patients are able to grow their own or purchase the medicine from caregivers or dispensaries.

Choosing the Right Medicine Strains

There are hundreds of varieties (i.e. strains, cultivars) of medical cannabis, each with different medicinal effects. The unique properties of each strain arise from their synergy of the cannabinoids, terpenes, and other compounds. Finding the right medicine will likely require trying out a number of varieties, but the following guidelines can help direct your search. Most patients eventually find 2-3 different strains that work well for different purposes, such as one for daytime and one for sleep.

Medical marijuana strains fall into a few major categories: indica, sativa, hybrid indica/sativa, and high-CBD. While these terms are not scientifically accurate, they are widely used in the cannabis world. Furthermore, cannabis by one name from one producer may be vastly different than cannabis by the same name from a different producer. The best way to identify a strain that works or doesn’t work for you is to have it laboratory tested for cannabinoid and terpene content, and to remember the appearance and aroma infusing fresh buds.

CANNABIS SATIVA strains are tall plants with narrow leaves and buds often having a spicy or flowery fragrance. These varieties are generally more mentally stimulating,
more energetic and euphoric. They tend to help more with nausea and other abdominal complaints, appetite stimulation, headaches, depression and fatigue. Although side effects are uncommon and usually mild, sativa strains are more likely to cause or worsen anxiety or paranoia.

CANNABIS INDICA strains are shorter and bushier plants and often having sour or fruity fragrance. Indica varieties are typically relaxing and sedating. They tend to help more with pain, anxiety, muscle spasms, and insomnia.

HYBRID INDICA/SATIVA strains are very common, and have been bred to achieve specific qualities. Many hybrid strains are able to produce effects that provide the best of both worlds.

CBD-RICH strains have specifically been bred to produce high levels of cannabidiol (CBD). CBD has several
exciting medicinal properties, including anti-anxiety, anti-inflammatory, anti-tumor, anti-seizure, and pain relief. Strains with high levels of CBD have decreased our negligible psychoactivity, making them desirable forpatients who want the medical benefits without getting “high” or impaired. This can be ideal for patients who need to drive, work, etc.

We recommend you consult with an experienced healthcare provider to receive personalized recommendations on cannabis strains and cannabinoid ratios/dosages for your condition. If you cannot find an expert, you can network with other cannabis-using patients that have similar conditions and find out which strains work the best for them, but remember, unless you purchase from the same producer, you may end up with totally different product.

Cannabis does not have to be smoked.

The beneficial compounds in cannabis can be administered by inhaling smoke or vapors, ingesting cannabis added to food or drink, swallowing capsules, taking liquid extracts such as tinctures or oils absorbed through the mouth or swallowed, or applying cannabis lotions, salves or patches to the skin. Each delivery method will have a different medicinal effect, even when using the same strain of cannabis. There is no “best” delivery method – each has it’s benefits, drawbacks, and clinical utility in certain situations.

INHALATION: ONSET 1-5 MINUTES, DURATION 1-6 HOURS

Inhalation of cannabis has several advantages, including fast onset, ease in consuming the correct dosage, and convenience. It’s an ideal delivery for patients with nausea, vomiting, or other conditions that make swallowing difficult. Due to the rapid onset of inhaled cannabis, it’s easiest for users to judge their response and know how much the cannabis is helping and whether or not they need more. On the other hand, inhaled cannabis is more likely to cause cardiovascular side effects, has a shorter duration than other methods, and may have a higher abuse potential.

Smoking is perhaps the most traditional method of cannabis use, and while it works well for many patients,
it has some disadvantages. The heat and smoke irritate the respiratory tract and lungs and could potentially worsen conditions such as asthma and COPD. While the smoke itself contains carcinogenic (cancer-causing) substances, long term heavy marijuana smokers do not have an increased risk of lung cancer, likely due to the anti-cancer properties of cannabis offsetting the carcinogens in the smoke.

Herbal vaporizers are very popular with many medical marijuana patients, and are widely considered to be the healthiest way to inhale cannabis. Studies have shown vaporizers reduce the amount of harmful substances created compared to burning and smoking. The vaporizer heats the herb to a specific temperature between 300 and 400 degrees Fahrenheit, releasing the medicinal substances into a vapor without the plant material burning. The vapor produced is warm and non- irritating. It contains the smell and flavor of the cannabis but feels as if you are breathing air.

A wide variety of vaporizers can be found on the market today, and many require some practice before achieving optimal use. When a patient uses a vaporizer it may take a little longer for the therapeutic effects of the cannabis to be felt compared to smoking. Many novices make the initial mistake of taking too many puffs in their first use, thinking they are not getting the medicine because it does not feel like smoke in their lungs. You can avoid this mistake by following our Introduction to Cannabis and Cannabis Sensitization programs.

TOPICAL (EXTERNAL USE ON SKIN): ONSET AND DURATION VARIABLE

Cannabis or its oil-based extracts can be added to balms, lotions, salves, patches, and linaments. Many of these preparations can be made at home and applied topically to help alleviate pain, muscle spasms, inflammation, itching, and various skin conditions, including eczema. Topical use of cannabis typically does not produce psychoactive effects if used in small amounts and in small areas. Using large amounts over significant areas of the body can cause psychoactive effects. Topicals labeled “transdermals” are designed for better absorption and will have a full body effect. The efficacy of a topical preparation may depend on its potency, but many patients have found they can use flower/bud trimmings or leaves to produce an effective topical medicine.

LIQUID CANNABIS EXTRACTS: ONSET 10-45 MINUTES, DURATION 2-8 HOURS

A tincture is a liquid extraction of cannabis, often in a solution of alcohol. Sometimes the word tincture
is erroneously used to describe oil infusions, which can be used in a similar manner. Liquid extracts can be absorbed directly through the mucous membrane in the mouth for faster onset, or they can be swallowed.

This is one of the most versatile delivery methods and works well for most patients. They are convenient, discreet (minimal odor), and easy to dose correctly. The onset and duration are intermediate compared to ingestion or inhalation. Liquid medicines do have some challenges: active constituents can settle to the bottom of the bottle, the effects are variable if held in the mouth vs swallowed, alcohol tinctures can irritate the mouth and may be inappropriate for people with a history of alcohol abuse, and the taste can be bitter or spicy.

To use a liquid cannabis extract, a specific number of drops or milliliters can be placed under the tongue and
held for 1-2 minutes before swallowing. Brushing one’s teeth first can increase blood flow in the mouth and speed the onset. Because each batch of liquid medicine may have a different potency, be sure to look at laboratory testing results, or if unavailable, start each new batch with a few drops and increase slowly. When using an alcohol based tincture, add the liquid to a small amount of warm or hot water first – this will evaporate some of the alcohol and dilute the rest, preventing irritation to your mouth.

INGESTION: ONSET WITHIN 1-2 HOURS, DURATION 4-12 HOURS

Cannabis can be added to a wide range of capsules, foods, and beverages. When cannabis is swallowed, it is absorbed through the GI tract and then metabolized in the liver (known as first-pass metabolism), which changes the cannabinoids into a form with longer duration of action and somewhat different medical properties. Many users report ingestion produces a stronger psychoactive effect, while others report less psychoactivity, and most find that ingestion produces somewhat different therapeutic effects. Many patients find that once they know their optimal dose, ingestion is a superior delivery method due to convenience, long duration, and preferred effects. Ingestion can be complicated by erratic absorption from one day to the next – absorption may depend on other foods consumed, sleep, stress, and other factors that affect the motility of the gastrointestinal tract. Also, cannabis edibles may not have a homogenous distribution of cannabinoids throughout the entire product – one half of the cookie may be more potent than the other half.

It is often difficult to achieve the correct dosage when consuming cannabis edibles, mostly because it takes so long for the patient to know if he or she has taken
too little or too much. For these reasons, we emphasize caution when eating cannabis; it is a good idea to start with a very small amount, wait 2-3 hours, then repeat the dose if needed. While it is not dangerous to overdose on edible cannabis, the effects can be quite unpleasant, sometimes aggravating the symptoms a patient wishes to improve. Since so many patients make dosage mistakes with cannabis-infused foods and have unpleasant experiences, we recommend keeping novice cannabis users avoid edibles and use cannabis in the form of a medicine, not a food.

Please note that while raw cannabinoids have non- psychoactive therapeutic properties, the effects commonly associated with cannabis are due to cannabinoids that have been heated (decarboxylated). Before being consumed, cannabis must be heated to convert the cannabinoids into their active form.

RECTAL (Variable onset and duration)

Cannabis suppositories can be useful for treating conditions in the pelvis and low back, and in patients who are unable or prefer not to inhale or swallow cannabis. Some patients report that rectal administration is less-psychoactive than eating, which may be due to the avoidance of first-pass liver metabolism. The little research on rectal cannabis absorption shows wide variability in absorption, and the composition of the suppository can make a significant difference.

RAW CANNABIS PREPARATIONS (ONSET 2-45 MINUTES, DURATION 2-8 HOURS)

Almost all of the research on the therapeutic properties of cannabinoids has examined the compounds after they have been exposed to heat, an activation process known as decarboxylation. A small body of literature has shown that raw cannabinoids possess anti-inflammatory and anti- nausea properties at surprisingly low doses in rodents. Patients have reported that raw cannabinoids are also effective for treating pain and seizures.

Raw cannabis is non-psychoactive and has a higher content of terpenes, the substances that produce the aroma, which also have a broad range of therapeutic effects. While very large doses can cause some digestive upset, few other side effects have been reported from raw cannabis. Fresh raw cannabis flowers can be eaten directly (chewing for a few minutes can speed onset), prepared into an oil, or brewed into tea (boil 1g cannabis in 1 L of water for 15 minutes). This recipe of cannabis tea produces a beverage with 90% raw cannabinoids and 10% decarboxylated, and quickly loses its potency over the course of a week, even when stored in the refrigerator.

About Dr Sulak: Dr Dustin Sulak, D.O. is
a renowned integrative medicine physician based in Maine, whose practice balances the principles of osteopathy, mind-body medicine and medical cannabis. Regarded as an expert on medical cannabis nationally, Dr. Sulak educates medical providers and patients on its clinical use, while continuing to explore the therapeutic potential of this ancient yet emerging medicine. He received undergraduate degrees in nutrition science and biology from Indiana University, a doctorate of osteopathy from the Arizona College of Osteopathic Medicine, and completed an internship at Maine- Dartmouth Family Medicine Residency.

Material for this article was originally posted on www.Healer.com written by Dr. Dustin Sulak and may be viewed here http://healer.com/

Resources

Brenneisen, R., et al. “The effect of orally and rectally administered delta 9-tetrahydrocannabinol on spasticity: a pilot study with 2 patients.” International journal of clinical pharmacology and therapeutics 34.10 (1996): 446-452.

Earleywine, Mitch, and Sara Smucker Barnwell. “Decreased respiratory symptoms in cannabis users who vaporize.” Harm Reduct J 4.11 (2007).
Elsohly, Mahmoud A., et al. “Rectal bioavailability of delta- 9-tetrahydrocannabinol from various esters.” Pharmacology Biochemistry and Behavior 40.3 (1991): 497-502.

Gieringer, Dale, Joseph St. Laurent, and Scott Goodrich. “Cannabis vaporizer combines efficient delivery of THC with effective suppression of pyrolytic compounds.” Journal of Cannabis Therapeutics 4.1 (2004): 7-27.

Grotenhermen, Franjo. “Pharmacokinetics and pharmacodynamics of cannabinoids.” Clinical pharmacokinetics 42.4 (2003): 327-360.

Hart, Carl L., et al. “Comparison of smoked marijuana and oral Δ9-tetrahydrocannabinol in humans.”Psychopharmacology 164.4 (2002): 407-415.

Hazekamp, Arno, et al. “Cannabis tea revisited: A systematic evaluation of the cannabinoid composition of cannabis tea.” Journal of ethnopharmacology 113.1 (2007): 85-90.

Rock, E. M., et al. “Tetrahydrocannabinolic acid reduces nausea‐induced conditioned gaping in rats and vomiting in Suncus murinus.” British journal of pharmacology 170.3 (2013): 641-648.

Verhoeckx, Kitty CM, et al. “Unheated Cannabis sativa extracts and its major compound THC-acid have potential immuno- modulating properties not mediated by CB 1 and CB 2 receptor coupled pathways.”International immunopharmacology 6.4 (2006): 656-665.

The Art of Transitioning

Published: LifeLines for Health, vol. 7 (Spring 2016)

Written by: Janet Brewer, M.Ed

The Webster definition of transition is (n) passage from one state, stage, subject, or place to another (v) a movement, development, or evolution from one form, stage, or style to another. In our lifetime, we transition multiple times as life is always in perpetual motion. Heraclitus the Greek philosopher said, The only thing that is constant is change.

As families or individuals managing hemophilia with an inhibitor, we have become experts at transitioning. Our lives change in the blink of an eye. One moment we are sitting quietly enjoying a cup of coffee and the next thing we know we are inpatient. When life is going along “smoothly” we are waiting for the other shoe to drop. The art of transitioning is an ongoing process. One that begins the moment our lives are affected by hemophilia.

Transitioning in a school setting does not happen all at once either. There are four critical stages within the educational transitioning process; entry at the early childhood to kindergarten level, then middle school, high school, and finally college and/ or employment. Each level hasits own areas of concern and set of communication and skill development.

Stage 1: BE TRUE TO YOUR SCHOOL

One of the most critical aspects of this transition stage is cultivating an open, honest and trusting relationship with the elementary team. Our children are leaving our safe, controlled home environment and moving into what I would call as a teacher, “organized chaos”. There are now many more children surrounding our child, increasing the risk of injury. This is a very stressful transition for every parent and child (as well as the school system). The first step is to meet with the school and institute an individualized health care plan (IHCP) that establishes protocols for any possible scenario to keep our children safe. There will be a lot of communication between you and your child’s teacher and/or school nurse to solidify this relationship. Annual transitions as the child advances through the grades will require reinforcement of that relationship with your school system and teachers. Miscommunications and mistakes are to be expected at each end of the relationship. The vast majority of school systems, especially teachers want to work with you for the benefit of your child’s success; it is there job. Try to remember that your child is one of at least twenty to twenty-five students s/he is responsible for every day.

Learning about hemophilia does not happen overnight; it is a gradual progression of skills. The more often you practice appropriate communication skills to collaborate with your child’s school system, the better your skills will become.

Stage 2: STUCK IN THE MIDDLE WITH YOU

Middle school is the next critical stage within the transitioning process. The positive communication skills you have (hopefully) developed by now will lay the groundwork for this chapter of multiple teachers and subjects. If your child does not have a 504 plan going into middle school, they should, as they will now be learning from a team of teachers. There may also be new members of the team who will become the point person or central advocate for your child such as a guidance counselor or school nurse. You should request that your 13-14 year old child be invited to any meetings that involve them; which is all of them. They need to begin developing and honing the skills necessary to communicate their own needs effectively with your coaching. Some teachers may be uncomfortable with this or indicate that it is not their policy but by calmly explaining that you are teaching your child skills for a lifetime of self-advocacy and transitions, they will understand. You can expect that there may be three or four meetings per year during this transition stage for parent- teacher conferences. There will also be a minimum of two 504 meetings, one at the beginning of the year and one at the end to add, delete or modify accommodations. If your child has an IEP, there will be one annual meeting with your child’s team unless they are up for a re-evaluation that occurs every three years. During a re- evaluation year, you can expect more than one meeting, as eligibility is determined. Parents have asked me if they need to attend all these meeting every year and my response is always “YES”. Yes, it is many meetings. Dependent upon the health of your child and consistent communication, you may rely upon the point person in your team to update you regarding progress or concerns if you cannot attend them all. Make it a point however, to attend the first and last semester/trimester parent-teacher conferences. These are crucial for the year’s success and setting your child up for success and expectations for transitioning into the next grade.

Stage 3: THE TIDES ARE HIGH

This now leads us to the high school transition year. These next four years will move at lightening speed; if you thought the elementary or middle school years went fast, this period of time feels like you blinked and it is over. You and your child will now be negotiating with multipleteachers, multiple semesters and multiple meetings. Communication at this stage can be very difficult between you and your child. Make friends with your child’s teachers, you will need them! Chocolate and gift cards go a long way. Handwritten notes are ALWAYS appreciated. Make it a point to get to know the athletic director or PE teacher if your child has not been excused from PE. This period of non- communication that began in middle school with your child will likely become exasperating to negotiate. The end goal

is age 18 at which point your child is now considered an adult. YEP! Trust me, they use their well-established communication skills to remind you of it frequently starting with the year they turn 17. If your child’s high school has not linked them in with your states’ vocational rehabilitative agency by the age of 16, be sure to make that connection. Don’t forget your child should still be attending meetings (which they may not like) and the school district is federally obligated to invite them. It is wise to start asking by the time they are 15 to begin this process. Dependent upon the state, the eligibility process can take up to a year, so start early. You will find more information at http://www2.ed.gov/ programs/rsabvrs/index.html. Here youcan find facts regarding your individual state’s governance over the Rehabilitation Act of 1973 and what services you or your child may be afforded. Each state is awarded different amounts of funding from the federal government so resources vary from state to state https://rsa.ed.gov/ people.cfm.

Stage 4: SCHOOL’S OUT

No matter whether your child decides on a college career, a safe trade, or a year or two of figuring it out, they will need to use their self-advocacy skills with college admissions, disability services, or a boss. Once they reach 18, parents can no longer be provided with information regarding your child so it is all up to them. They can fall back on their resource contact from vocational rehabilitation no matter what career route they choose. Vocational rehabilitation services can include assistance with obtaining a job, training and in some states college funding. It is well worth the effort to get in touch with them! Just an aside, as a mother who has done the high school/college “rodeo” three times, relax! There is already so much pressure put on young adults these days. Here in Massachusetts with many prestigious private colleges, the message often received is that you must attend a private four-year institution and sleep away from home in order to be successful. This path may be the right one for some children, but not for all. Student loan debt is at an all time high with young adults coming out of college with massive debt and no jobs to help pay it. It will most likely take your child more than 4 years to complete their degree depending upon their health, their level of interest and how many times they change their major. Try to remember that they have lived a life that makes them wise beyond their years in some ways but very naïve in others. Each generation’s lifespan extends longer and longer into old age. In this country, we work hard for a long period of time where leisure and recreational activities are just now being recognized as important to our overall health. They will follow their own path. It will probably make us crazy as parents to watch the trails they go down and what trials they bring; but they were raised to be the best advocates for themselves and we have to trust we taught them well.

How to Thrive in Today’s World and M a n a g e Your ANGER (Fall 2016 Feature)

Published: LifeLines for Health, vol. 8 (Fall 2016)

By Matthew Manela, LICSW, LADC

In today’s world we are put to the test every day. A typical day for many of us involves getting kids to school, picking them up from school, driving one to practice and then the other to Karate all while thinking about what to make for dinner and cooking dinner! This is only the beginning of the night...next comes homework, baths, making school lunches and bed! This is all after working an 8-hour day! This is a good day with no additional stressors and frustrations! Consider a not-so-good day where you hit traffic, are late for work, or forget an important appointment. How can people thrive and live their lives without becoming obsessed with anger?

First, let’s start with why we get angry. Anger is a secondary emotion that is triggered when we are afraid of something negative happening and blame someone or something for the negative situation that occurred. We then personalize the negative event and see the person or thing as causing the event. Anger serves as a response to protect ourselves from being harmed. In addition, we continue to stay angry because we are having a hard time accepting the event for what is. It is our reaction to the event that triggers and maintains our anger. The problem with anger is that, while we are angry, we are not living life to its fullest in a way that is important to us. In order to best illustrate how to cope with anger, I developed a 12-step model to manage your anger.

Step 1: Recognize that we are powerless over our initial response to anger.

The first step to anger management is to accept that we are powerless over our initial reaction to anger. Through our life experiences, we have developed automatic thoughts that are based on the events of our lives. Over time, these events have created a response to protect us from being harmed. Unfortunately, we can’t control our automatic thoughts but we can observe and notice our thoughts. It does not matter what your initial thought is, but rather, what you do with the initial thought that dictates what emotion you will experience. If your next thoughts are focused around blame and being wronged, then you will feel angry. If your thoughts are more neutral then you will feel an emotion that corresponds to your thought process. The goal in this step is to begin to observe your thoughts and your reactions to the events in your life and begin to identify patterns.

Step 2: Willingness to accept that adjusting perspective is a necessary part of changing the anger-response cycle.

My 12 step model follows the philosophy that the event is not the cause of your anger, rather, your thoughts about the event are responsible for maintaining anger. In other words, life has a series of ups and downs, no one made you angry but rather you allow yourself to continue to be angry. This may be a very different way of thinking about anger than you have previously considered. As
a result, shifting to this new way of thinking may be challenging. That is the reason Step 2 is about getting ready to adjust your thoughts and take more responsibility around your anger.

One of the most difficult parts of learning to manage your anger is making a decision to change. The reason it is so hard is because we can become obsessed over our unmet needs. When we are angry we may find it impossible to think of anything except that another is “wrong” and we are “right”. The question that I often get is “what if you are right?.” The problem with this question is that anger has nothing to do with whether you are “right.” The question you need to ask yourself is whether or not you want to reduce and/or let go of your anger. To help make this decision you will need to think about and be clear about what is important to you. You need to ask yourself ‘how do I want others to see me?’ “What do I want my relationship with this person or this company to look like?” “How do I want to be remembered?” “What are my values and do these words and actions move me towards or away from meeting my values?”

Step 3: Make an inventory on what triggers us to get angry.

Once you have made the decision to reduce your anger, the next step is to observe your thoughts, expectations, needs and events that triggered your anger. In order to understand your anger and what triggers it, it is helpful to explore whether the thought that you are having is helping you move towards, or
away from your values. You want to explore if you are trying to control the situation with your anger, or if you are just reacting to the situation? Other factors to consider are the circumstances around you. Notice if anger episodes increase when you are tired or hungry. Notice what you were doing right before an anger episode and what impulses you experience. The reason for taking an Anger inventory is because it is your thoughts and perspectives that get you angry, not the event itself. If this is true, then knowing your triggers is a necessary step for anger reduction.

Step 4: Come to a full understanding of the Fear = Anger connection.

One of the biggest anger triggers is fear. The fear that I am referencing is based on our past experiences and are triggered in the present. For example, an individual with a learning disability may have been removed from their mainstream classroom as a child. A fear of not being liked or being different may develop. As an adult, when an event triggers the feeling of being left out an individual may become angry to protect themselves from being hurt. It is important to explore and identify your pain and how your fear tricks you in to thinking you can do something about it, by blaming others. When we get angry, we are trying to control
the event or person we see as causing our anger, instead of accepting it. In this step, we need to recognize how we are avoiding our pain. We need to decide what changes will bring us closer to being the person we want to be. This does not mean that we are powerless to change the negative aspects of our situation in the future, but rather, recognizing that staying angry does not help make the pain better over the long term.

Step 5: Compassion for others and not blaming them entirely allows us to be less angry.

In this step we move from collecting information about our anger, to making changes in the way we are thinking about the situation. To do this, we need to reduce the amount of blaming we are doing and replace it with compassion. What is compassion? Compassion is looking at an event or situation the way it is and not the way that we created it to be. Looking at things objectively is a difficult process. To increase objectivity, we need to reduce judgements and be open to alternative ways to explain other’s behavior. One way to do this is to adopt the philosophy that most people ‘s intentions are generally good. The reason we judge people is because the mind has a natural instinct to see things in black and white or right and wrong. However, when challenging your thoughts you need to bring compassion to your understanding of the current situation. You need to keep in mind while you’re practicing these skills that you don’t need to believe everything that the mind dishes up. Your job in this step is to try to bring compassion to what your mind comes up with. My suggestion is to practice this skill in places that only create simple frustrations. For example, try bringing compassion the next time you are waiting in a long line in the supermarket or in a traffic jam. Try focusing only on thoughts based on the facts of the situation.

Step 6: To identify that Anger-Triggering Thoughts are based on cognitive distortions (thinking errors). We recognize that these thoughts are based on assumptions and are not valid.

The thing about stressful emotions is that they only stay with us when we are feeding them with new negative thoughts. When we feel angry, we usually add to the original thought. For example, if I become angry that my son lied to me about something, I don’t usually say “Ok that’s fine.” My next thought is usually something like this - “That little bugger, he is always doing this to me.” No matter what you say to yourself, most likely it is based on an assumption, which causes a thinking error that maintains your anger. These are called cognitive distortions. When you are using cognitive distortions, you are also fusing with your anger. That is, you see your thoughts as 100% true and are not able to separate from your thoughts. When you fuse with your thoughts, you are not open to anything except how you are “right. “In this step, you learn to identify when you are fusing with your thoughts and using cognitive distortions . The following is some examples of cognitive distortions; should statements, jumping to conclusions, magnification, and over generalization. There are others but these are the main ones that create and maintain anger.

Step 7: To challenge and accept our cognitive distortions and move forward towards our values.

In this step, we are disproving the distortion and learning to separate from our thoughts. How can we separate from our thoughts?

In order to understand this concept you need to understand that we are not our thoughts and that our thoughts are not always true or accurate. In fact, thoughts are just thoughts. I might have a thought that I want a piece of cake but that does not magically make a piece of cake appear. The same rule applies to my thought that my coworker intentionally acted in a negative manner. Just because I think it, does not make it true. It may feel true and we may really convenience ourselves that it happened but without evidence, it’s not true. So what do we do with our thoughts? First, observe your thoughts and look at the facts. Next, notice your thoughts without giving them much attention. By just noticing your thoughts instead of feeding them you will begin the process of separating from your thoughts. You will begin to accept your thought. For example, let’s say that you are angry with a coworker. Which one feels better to you, my co-worker does not trust me or I am having a thought that my co-worker does not trust me. Telling yourself you are having a thought or noticing a thought allows you to accept your thought, which opens yourself up to more possibilities. It opens yourself up to looking at the issue in a different way and helps move towards actions that are important to you.

Step 8: To assert our needs and take responsibility for our actions.

Now that we have started the process of separating from our thoughts, we need to determine if we need to communicate about them. We don’t always need to tell someone that we are angry. Sometimes it makes sense to tell someone about your anger and problem solve with the person. In the spaces below, I have identified reasons we should communicate/problem solve.

1. To reduce the likelihood that you will hold onto a resentment

2. To reduce the chances that you will get angry at the same thing over and over again

3. To help others better understand your triggers

4. To help you accept the present

5. Gain clarity of your thoughts

6. To enhance understanding of your expectations

In deciding to engage in communication and problem-solving, we need to realize that we cannot expect others to act or think like ourselves. We can only take responsibility for our own actions and communicate what would be helpful for us while understanding that other people may not agree. When you communicate with someone you need to be willing to work with the person and have an open mind. Then together, we can begin to resolve an issue. For example, you decide to communicate your anger to someone for not understanding your needs. In order for that conversation to be helpful, you will need to be open to the other person’s point of view. If the two of you share your point of views with each other you are more likely to agree on a solution that you both are happy with. One tip when talking with someone, make sure you have done the other steps first. This way, you are clear why you are angry and you are not communicating while you are having angry thoughts. If you communicate while you are still angry your communication and ability to problem- solve suffers. We have a tendency to communicate things we don’t mean when we are still angry.

Step 9: To forgive or accept others and that our past resentments cause us to replay the same anger triggers over again.

In this step we are working towards accepting a situation for what it is and/or we are forgiving the person or thing involved. The word forgiveness is tricky because most people see forgiveness as saying that “what you did is Ok.” For our purposes, forgiveness is the process of accepting the situation and letting go of the event and being able to move forward. Forgiveness is for you and not the other person. It helps you move on and live a valuable life. In addition, forgiveness is not the same as forgetting.

For example, those who were alive for 9/11 know and remember the event like it was yesterday. I am sure you can tell me where you were when you heard the news. Although I have not forgotten, I have accepted the event and no longer hold on to the anger from that day.

The question I am often asked is “How do we forgive?” By the time you get to forgiveness you are already on your way. You have already acknowledged your anger, identified the hurt, fear, and judgement, and separated, and communicated your thoughts. The next part is making a decision to accept the situation for what it is by using the skills previously discussed and move closer to your desired view of yourself.

Step 10: The power of positive thinking and being in the present can help us maintain a more serene lifestyle.

Now that you have accepted the situation, it is now important to maintain your progress. In this step you are working on keeping your thoughts in the present and focusing your attention on the event and situation that you are participating in. Just like any other muscle you need to exercise your brain to learn to stay in the present. You will find if you practice staying present when you are not angry, then when you are tested, you will find it easier to work the anger management steps.

Another skill learned in this step is to increase your flexibility and your openness to possibilities. This takes practice. You can practice these skills in places that don’t cause too much anger. Perhaps the next time you are in the supermarket and you are annoyed by the cashier, you can practice identifying as many possibilities of why the line is moving slow. See if you can come up with positive and negative reasons. The purpose of the exercise is to open your mind up to the possibilities. It is not to be right. The better you get at different possibilities the better you will be at being flexible in the future. It is important not to compare yourself to other people, life is not a competition. Comparing yourself to others makes it hard to stay positive about the present. Instead, focus on what you like about your situation instead of what you don’t like.

Step 11: To continually take your inventory in order to maintain your hard work.

This step focuses around the maintenance of your newly learned anger management skills. In order to maintain your hard work, you need to keep paying attention to your thoughts and feelings on
a regular basis. Although, it is not possible to pay attention to your thoughts all the time, it is important to keep your values in the front of your mind and to stay focused on who you want to be, what you want your relationships with others to look like, and doing things that are important to you. Paying attention to your values allows you be open to different choices and possibilities. You also want to be aware of your triggers, thoughts, expectations and values. In this step you are focusing on what is important to you. The goal of this step is doing these things without feeding the anger tiger inside. It is important to be aware of what your barriers are to becoming the person you want to be. It is important to remind yourself of your values everyday so you can ask yourself, “Is this behavior and action towards or away from living the life I want to live?”

Step 12: Practice these principles and make a commitment towards your values

The final step is to help remind you to practice the principals on a regular basis in all areas of your life. It is important to practice these principles so when you get angry, (and you will get angry) you can handle your reaction and turn it around much faster. It’s important to remind yourself that it is up to you whether you will be driving yourself towards your values, or whether you will go on a detour. If there are barriers blocking your values, then you need to strengthen those skills by practicing. Practicing will help you to remove the barriers.

One thing to remember is that anger management is not an abstinence model. You will get angry but practicing will help maintain the speed that you accept the event or increase your ability to move quickly, let go of the anger, and go back to living a life that brings you enjoyment.

Here are the skills for a quick review:

1. Reduce judgments

2. Bring compassion to different situations

3. Accept events for what they are

4. Reduce expectations of others to think and act in the same way as you do

5. Practice flexibility when things don’t go as planned because they won’t

6. Things don’t need to be done perfectly or “correctly”

7. Open your mind to other viewpoints and possibilities

8. Stay in the present

9. Forgive/accept people and situations for you and not others

10. Keep your values and your inventory in the front of your mind

Anger can be an overwhelming emotion and it can be difficult to change the way we respond when we feel wronged. However, by practicing these 12 steps and learning how to manage your emotions, things might feel a little easier. In addition, these steps will help you to respond to things in a way that will help you achieve what is important to you including how we respond to others and how we see ourselves. These 12 steps are not a “cure all” and things do “stink” sometimes but by practicing these steps it may seem a little more possible to live a more productive and satisfying life.

Matt Manela is a Licensed, Independent, Clinical Social Worker, and a Licensed Alcohol and Drug Counselor who has developed, researched, and implemented his 12 Step Anger Management program. He received his bachelor’s degree from the University of Rhode Island and his master’s degree from Widener University. Matt has had positions as a clinical supervisor, clinical director, and full time private practice clinician. He is currently working at Mclean Hospital as a family therapist in a residential program for adolescents managing OCD and anxiety disorders. Matt has a small private practice where he conducts his successful anger management program. He is also an adjunct professor at Massasoit Community College.

Felt Angry Lately?

by Dr. Gary McClain, PhD

Published: LifeLines for Health, vol. 8 (Fall 2016)

Coping With Angry Feelings at Home

Felt angry lately? If you’re human, the answer is probably yes. So the better question is: What did you do about it? Something? Nothing? The wrong thing?

It’s only human to get angry. In fact, you’ve been getting angry since before you were even aware you could get angry; like that time when you were a few days old and you howled until the milk was delivered. Anger is just one more emotion along a whole range of emotions that are part of being human.

Here’s what’s ironic. While anger is an emotion that comes naturally, it is also the emotion we often have the most trouble feeling and expressing. And the emotion we often have the most trouble dealing with in others. We live in a world where we often witness anger that seems to get out of control. This leads to outbursts and hurt feelings or worse.

Life challenges bring up a lot of emotions, including anger. Living with a chronic condition, or living with someone who is living with a chronic condition, can certainly bring up a lot of anger. Whether the anger gets expressed or not, and what happens if it does, is complicated, to say the least.

Really Mad? Talk Yourself Down!

Here are some ideas on how to handle your own angry feelings:

Count to ten. 

Yes, this is one of the oldest tricks in the book. You’ve probably even seen it on a sitcom or two. But I can tell you from personal experience that it works. Counting to ten gives you a chance to think, and to calm yourself down, before you react in a way you might regret later. While you’re doing that countdown, don’t forget to breathe.

Step out of the story. 

Ask yourself if there is an old story behind your anger. If you hear yourself saying something like “this always happens to me” or “I never get what I want” then that’s a clue to a story you may be trying to repeat. React in the moment, to the current situation, and not to a situation in the past that this might remind you of. By staying in the moment, you will be more likely to keep that reaction from blowing up into something that it isn’t.

Reconsider your expectations. 

What were you expecting (to happen, receive, hear)? And were your expectations realistic? Sometimes anger is the result of not having our expectations met. Having realistic expectations is a great way to avoid the disappointment that can lead to angry feelings. And remember: you’re not in control of everything. Isn’t that a relief?

Get clear with yourself on why you’re feeling angry. 

Often, you can identify what is making you angry. Something that happened or didn’t happen. Something that someone else did or said. Situations that feel out of your control. So take a step back and look inside to

see if you can identify what’s pushing your anger button. Other times you just feel bad about the challenges that come with a chronic condition, and just want to vent. Whatever the reason is, be aware of it.

Look for the humor. 

Recognizing the humor in a situation goes a long way toward balancing out that rage-rush that anger can bring on, as well as help you to keep your perspective. How about having a good laugh about how life just seems to get in the way of our plans?

Have a heart. 

Chronic conditions bring up all kinds of emotions. Accept your own feelings – all of them – and let yourself be human. Give yourself a break, and you’ll be that much more able to give others a break, too. Patience! We’re all in this together.

Reach out for support. 

Talk to a friend or family member who can listen without judging you for your feelings or trying to tell you what to do. Vent if you need to. Let those angry feelings out.

Take care of yourself. 

Are you placing the needs of others before your own needs? Not taking care of yourself can leave you feeling emotionally or physically depleted, and especially vulnerable to resentment that leads to angry feelings. Take time for yourself every day. Take a walk, listen to music, do something you enjoy. Feeling angry is only human. You don’t have to avoid feeling angry, and you don’t have to be controlled by your anger. You have a choice!

Use Anger Productively in Family Communications

Now... let’s talk about anger that gets directed toward other family members. When one member of the family is living with a chronic condition, everybody is living with it. Day-to-day interactions at home can get tense sometimes. And when that happens, tempers can flare. Here’s how to communicate when you’re angry:

Express your feelings with the “I word.” 

Start out the conversation with your partner or other family member by expressing how you feel. It can be helpful to use the “I” word and not the “you” word. Make the conversation about how you feel, not how you assume the other person is feeling. Take responsibility.

Focus on the issue. 

Talking about your anger will be a lot more productive if you focus on the specific issue you are angry about. A bad day when you had plans. Something they said or did that caused you to feel hurt. Another change you have to make to accommodate your or a family member’s chronic condition. But not everything that has made you mad over the last 10 years. Caution: consistently talking about angry feelings as they arise will help you to avoid the big build-up that can lead to an explosion.

Let your family member know what you need. 

Sometimes we just feel angry because of the challenges of life. No one knows this better than someone who is living with a chronic condition. You may need a little time to vent and get some support. Other times, the issue may be one that needs to be addressed with action. Your family member can’t read your mind. So tell each other what you need. The best way to promote peace is for everyone to be aware of each other’s hot buttons, and what everybody can do to either avoid pushing them, and how to get back on track after they have been pushed.

Attend to any collateral damage. For example, if your kids had to watch their parents hollering at each other. That can be scary for kids. A few hugs may be in order, along with giving them an opportunity to talk about what it was like for them, followed by some reassurance. If friends or family members were within earshot (not to mention the neighbors), you may want to reach out to them as well.

And Help Family Members Express Their Anger

And when you are on the receiving end of anger, here are some ideas that might help:

Listen. When your partner or family member directs anger toward you, your first reaction may be to put up a barrier or to become defensive. Try to remain calm and open. One way to do this is to remind yourself that they may be having a bad day and need to vent. But it may also be possible that they need to say something that, once you become aware of it, can promote more peace and harmony in your relationship. Listen and learn.

Help the other person identify the issue. Your partner or family member may not be crystal clear about what he or she is angry about. One way to help keep the anger from escalating, and potentially help to identify what is bothering them, is by asking a simple question: “How can I help you?” This shows you are listening and care. And by asking it, your family member may be able to identify what’s at stake, or to realize they simply need a listening ear.

Talk. Listen. Understand. Don’t expect to solve. Anger doesn’t always lead to a solution. Sometimes the lack of a solution is what leads to the anger in the first place. Be okay with sharing feelings and understanding each other. Be okay with acknowledging each other’s anger. Recognize what is in your control and what is not in your control, what can and can’t be changed, where you agree, and where you agree to disagree.

It’s not okay to make someone else feel like a punching bag. And you don’t have to feel like one. Sure, chronic conditions introduce lots of challenges and frustrations. At some point, it may be necessary to gently let your partner know you are willing to help, and listen, but that you aren’t there to be verbally abused. Repeat as needed.

Caution: Unexpressed anger can lead to depression. Depression is sometimes referred to as anger turned inward. Create an environment at home in which it’s okay to talk about feelings. Watch your children for signs of depression! Symptoms can include withdrawing, loss of interest, changes in eating or sleeping habits. It may be time to sit down and have a talk.

Remember:

Compassion is a boomerang. Show love to yourself by feeling how you feel and not denying your own
emotions. Show love to your family members by being willing to hear how they are feeling, even when the conversation isn’t so easy to listen to. That’s compassion.

How about starting the conversation with: “I love you.”

Gary McClain, PhD, LMHC, is a therapist, patient advocate, and author, specializing in helping clients deal with the emotional impact of chronic and life-threatening illnesses, as well as their families and professional caregivers. He works with them to understand and cope with their emotions, to learn about their lifestyle and treatment options, to maintain compliance with medical regimens, to communicate effectively with the medical establishment, and to listen to their own inner voice as they make decisions about the future. His email is: gary@JustGotDiagnosed.com. He welcomes your questions and comments.

How to Approach a 504, (or any other meeting at your child’s school)

Published: LifeLines for Health, vol. 8 (Fall 2016)

by Lisa Cosseboom, M.Ed. & C.A.G.S School Psychologist & Special Education Evaluation Team Chairperson

For parents, the process of going into the school for a meeting produces anxiety, if not some level of fear. So often, it is one or two parents entering a room, quite often filled with multiple educators, including teachers, special educators, nurses, specialists, counselors etc. The process can be daunting and intimidating. Acronyms like IEP, LRE, FAPE are thrown around and parents frequently don’t know what those acronyms mean. As an Evaluation Team Chair, I see parents’ frustration, or even worse them disconnect from the meeting process altogether. This often produces tension amongst the Team members and parents feel that they need to come to a meeting with their defenses up and ready to battle! Complicating matters is that often a school team is uninformed about the bleeding disorder community and the impact a bleeding disorder has on a child’s education.

When parents come to a meeting with an initial sense of anger or frustration, the emotional outcome of the meeting is not going to be productive or what is in the best interest of the child and is most likely to fracture the entire team process. As the person who facilitates the IEP meeting, I generally can sense the direction the meeting is going to go when I introduce myself to the parents to bring them into the meeting room. Disposition and attitude of the parents are generally evident upon this first greeting as is the attitude and disposition of the school team. It is extremely important that the school based team and the family work together in the education process to strengthen the partnership between home and school. Research demonstrates that children perform better in school when parents are more informed and involved in their education process. Additionally, this involvement fosters relationships with the teachers, nurses and specialists that help keep them informed of your child’s current medical/emotional needs!

View fullsize

Some things for parents to keep in mind when approaching a 504 or IEP Team meeting:

1. Approaching a meeting making demands will not be productive, even if the demands are legitimate or reasonable. It is important to model the behavior that you want drawn out in your child’s plan.

2. It is important to recognize that having the mentality of you vs. them is not useful. The Team approach should be a “we” approach. The parents are part of the Team!

3. When parents are asked about their thoughts or concerns, it is just as important to comment on the positive as well as the concerns. Positive comments go a long way to help facilitate a positive atmosphere!

4. Always keep in mind that the Team is there to focus on the child, not any one person’s agenda.

5. It is important for parents to be knowledgeable in the process. If you are unsure of the regulations
of an IEP or 504 meeting, don’t be afraid to reach out to your school for clarification.

6. Provide information about your child’s bleeding disorder to the school-based team ahead of time so that they may make the time to read and research!

School Teams are invested in the process and want things to be positive and work together collaboratively with families. It is vital that all parties come to the table with the child and the child’s needs in mind in relationship to school functioning and success. Most educators go into the education field because of their love of children and their love of watching children grow and succeed. They work hard, long hours, for little pay and just want to make a difference for children and families. Approaching meetings positively will almost always yield positive results!

LEVERAGE: a Molehill Practice for a Mountainous Adventure

By: Justin Levesque

Published: Lifelines for Health, Winter 2017

Some things in life never change, like living with severe hemophilia. Treatment options have come and gone and of course, there’s the promise of new therapies on the horizon. But on a fundamental level, I’ll always have these mutated genes to keep me company. It wasn’t until recently though that the perception of my bleeding disorder was turned upside down with the sudden development of a high-titre inhibitor at twenty-five (I’m now thirty-one). Things were really rough those first few years. With lots of bleeds and a dash of emotional defeat, I only exacerbated the impact of my perceived epic misfortune by isolating from others, imposing limitations upon myself, and no longer seeking out life’s great adventures.

It’s a longer story than this space allows but eventually, having an inhibitor (and everything that comes with it) became integrated into everyday life and I got back to sustaining a creative practice of making artworks and photographs. Most photographers dream of the opportunity to travel to remote places and make pictures. While it’s a dream I also shared, I was always deeply worried about my ability to do so; this fear now bigger since I developed an inhibitor.

Last year I came across a “Call For Applicants” to The Arctic Circle artist residency program. The Arctic Circle residency is a highly competitive program that brings together thirty international artists of all disciplines, scientists, architects, and educators who collectively explore remote and fascinating destinations aboard an ice-class Tall Ship and takes place in the international territory of Svalbard, a mountainous Arctic archipelago just 10 degrees from the North Pole. On a whim, I applied thinking the chances were pretty slim. But a few months later, I was beyond stunned to learn of my acceptance and that I was now invited to go north in June 2017.

Of course, I was excited. So excited. And while I still couldn’t believe it, I bombarded myself with questions about the reality of my body in the Arctic: Can someone with a inhibitor go tot heArctic? Should I disclose my disorder to the program beforehand and potentially jeopardize the opportunity? What if the activities are beyond my physical capability but everyone else is doing it? Do I push myself and risk a bleeder catastrophe? Will I miss out on seeing parts of the Arctic landscape if I don’t do every adventure presented to me?

It was about this time that I was encouraged to participate in CHES’s Leverage inhibitor adventure program co-facilitated by GutMonkey at YMCA Camp Collins in the heavily wooded forests of Portland, Oregon. Leverage is described by CHES as, “Introducing a revolutionary, new program for young adults with inhibitors. This 5-day adventure delivers heart-pounding excitement that puts your inner strength to the test! Find out what you’re made of, and develop new skills that can help you become who you want to be.”

It probably sounds silly but I initially declined because “That’s too.. adventurous for someone with an inhibitor.” I’m not sure why my brain was OK with winging it in the Arctic while scoffing at the Pacific Northwest but the absurdity of my rationalization was thankfully pointed out to me. I prepared to fly to Oregon just a few weeks shy before heading North. It was, hands down, the best decision I could have made.

At Leverage, you’re surrounded by other folks with a bleeding disorder and an inhibitor just like you. It couldn’t be more relaxed and no one has to explain why you’re different than a “normal” bleeder. There’s structured adventurous activities (more on that later) and plenty of free time to explore the camp’s beautiful and serene natural environment. To top it off, GutMonkey and CHES’ supportive staff brings truly impactful educational opportunities that speak authentically to the difficulty of the lived bleeder experience and provide new skills and techniques to navigate that Inhib Life.

When it came time for adventure, there was a wide gamut of activities for us to participate in. I don’t use that word lightly, participate. From learning to throw a tomahawk to floating 60 feet in the air (they call it the Flying Squirrel) to rapelling down the side of a building with nothing but open ravine below you, the only thing that mattered was to participate. What I learned was that participation didn’t always mean being the person strapped in or required to use their body in some performative way. Participation was also helping to keep the ropes organized, shouting “You got this!” and just being present for your fellow campers.

If something was too beyond my comfort zone, I was affirmed and supported in my choice to pass on a particular activity. I relearned how to say, “No thanks” and be OK with that choice. No one judged me there but I also realized if anyone did, or rather, if anyone else in the world were to, that it didn’t matter. I was doing what I had to do for me. It was both practice and a practice. I got to try all this “saying no” stuff out, to hear the words coming out of my own mouth and gain comfort in their sound. And further, it was a mindset that developed while at Leverage. To be present in my own body, to pursue and be OK with my own motivations as reconciled with my known limitations. I was asked to push myself within reason but not become some kind of unattainable superhero.

I can’t stress enough how important all of these lessons would become and how often I would think back to this week in the woods while I explored the frozen Arctic Ocean. While some folks hiked every glacier they set their eyes on, I resolved to climb one. While some folks lugged every single piece of heavy gear to shore, I rotated one piece of photo gear for each landing where I could really focus on using that tool. While some folks didn’t think at all about their bodies and found themselves injured and quite sore, I was always listening to my body with an acute awareness to make choices accordingly and with confidence.

Thank you CHES. Thank you GutMonkey. Without Leverage, I’d have been frozen with fear instead of finding myself in the middle of a glacier just shy of the North Pole.

Taha’s Moment: Finding “Normal”

By Taha Amir

Published: Lifelines for Health, Winter 2017

I am a 32-year-old male with severe hemophilia A. I moved to the United States, from Saudi Arabia when I was about 7 years old. Within that year, the hematologist told my parents that I had inhibitors - and they were lost, confused, and devastated. My parents knew what hemophilia was because my mom’s brothers also had it. But inhibitors were unheard of. The hematologist said that my body does not accept the “regular” factor, and I needed a bypassing agent called FEIBA. My brother was born in 1992, and he also has hemophilia, but not inhibitors, thankfully. To me, he was considered a “normal” person.

As a kid growing up with hemophilia with an inhibitor, I always stood out. I had bruises, swollen joints, and I walked with a limp. If I wasn’t walking, I was either using a wheelchair, crutches, cane, or a walker. I felt left out because the other kids were playing and walking better than me.

My pediatric hematologist suggested that I attend a hemophilia camp, which I did. The first time I went, I was nervous and scared because I wasn’t in my safety net and away from my parents for the first time. Even at the hemophilia camp, I stood out. I was still “different” from them because I had inhibitors. The “normal” hemophiliacs were still better than I was. Despite my struggles at camp, I attended a couple times after that because I was accepted. It felt like they knew me!

As a teen, I really didn’t attend any hemophilia events because it seemed like I was always bleeding. My younger brother, who also has hemophilia without inhibitors, was able to do more than I could. I felt as if I was the only one who had a different kind of hemophilia, which I did.

As I graduated high school, I decided to change my outlook on life. I attended a hemophilia conference, and met some amazing friends whom I still keep in contact with. At one of these events, I met the co-founder of CHES. She introduced herself and what CHES does for the hemophilia community - especially the inhibitor patients/community. One of the programs they offer is called Momentum, a men’s inhibitor retreat.

So far, I have attended Momentum twice. In July, I had started Immune Tolerance Therapy (ITT) in April 2017. By the time I went to the event, my inhibitor level was 0. Even though it had been 0 for a few months, the hematologists still hadn’t declared tolerization. I still have to do daily infusions of factor for the next few months.

Each time I have gone to the Momentum event, I have learned something new and met some amazing men who actually understand my struggles. The retreat is a three- day event over the weekend. The first day was dinner and a small informative talk by Dr. Dustin Sulak about the uses of medicinal cannabis for both acute and chronic pain. The second day started off with breakfast, a few more educational talks from treatment products to pain management, followed by lunch and more great information like infusion tips and tricks and practical career paths. One of the hot topics of this year’s retreat was health insurance and the current changes by NHF’s Michelle Rice. In the evening, the group went out for dinner and entertainment.

Most of the previous events that I’ve attended were primarily catered to “just normal hemophiliacs.” At Momentum, I feel accepted and better about myself. It has really changed the way I look at events for hemophilia with inhibitors.