Dermatomyositis Update March 2015

So it's 2015, and I am still managing the dermatomyositis without oral medication. The last time I visited my dermatologist, she wouldn't put me back on the prednisone because I had never lost the weight that I gained from the prednisone previously. So, the idea that weight gained when you are on prednisone goes away when you get off of it is not always true. I never lost the weight.

Additionally, I had been depressing my immune system by eating sugar - on purpose - because it stopped the itching.

My dermatologist gave me 3 different topical medications: one for my neck and upper back, one for my head and scalp, and one for my hands and arms. I use the topical medications when the outbreaks are itchy and red and irritated. I use an antihistamine when the itching is out of control. It stops the itching, and she said I could continue to do that.

She also sent my to my general practitioner for consult and blood work. I had become pre-diabetic, pre-high blood pressure, and pre-high cholesterol. Basically, I was a mess and definitely over weight. I had gained 55 pounds in this process, and not able to get the weight off. I recognized the symptoms of being pre-diabetic. I was thirsty all the time and felt like I had to go to the bathroom - urinate - all the time. My skin was dry and flaky around my mouth, and my hands were horribly dry.

I cut all the sugar out completely and immediately. I'm not trying to kill myself just to manage dermatomyositis. I want my health in tact. I have a long bucket list, and my children are starting to have children of their own. I would like to be around to enjoy my family and my partner. I am motivated to change my situation is my point. If you are in a similar situation, you have to find your motivation. I personally want a high quality of living if I am going to be on this planet.

So I cut out sugar and started watching my carbs. I also made more of an effort to go to the gym to at least exercise on the treadmill, bike or in the pool. I started riding my bike. That is what my rheumatologist had told me would help. Keep moving, keep the lymph and muscles flushed out so I don't accumulate the bad stuff that causes the break down in the muscles and joints. I really had slowed down on the exercise.

In January my partner bought me a Vivofit. That has been amazing because I can track my calories - something I have NEVER DONE. I had no idea how much excess healthy food I was eating. Did you know an avocado is 350 calories!?!!! OMG I came to understand that I was eating healthy for like 2-3 people!! So calories and portion size reduced immediately. With the Vivofit, you can track your calories and daily activity. It reminds you to move when you have been sitting for too long, which improves your metabolism. Awesome!! I had lost about 10 pounds before I got it, and now I've lost another 10 pounds with it!! I also like that it helps me be aware of my movement by tracking how many steps I take in a day. If I hit my quota, I'm on the path to weight loss. If not, I know I will stagnate.

More than anything, I am simply more aware of my calories and my exercise. It's amazing. I really never had to do that before, so I was not aware. If you are in a similar place in your struggle with dermatomyositis, or even with weight loss, consider getting a device that allows you to track your food and exercise. However, I do NOT recommend this if you have a history of food disorders. My partner does, and she quit tracking her calories as soon as she was clear on food portions that worked because the idea of tracking was sending her back into food disorder mode. If you are under the care of a physician or counselor for a food disorder, you need to work with them before taking on using a tracker. IT'S REALLY IMPORTANT YOU DO NOT TRIGGER YOUR FOOD DISORDER :)

Be healthy ya'll!! Til next time!

Iron and Exercise

Adding an iron supplement has certainly helped with feeling better. I am not as cold or apathetic - and am feeling like exercising more. I have ridden my bike 4 times this week for 30 minutes each. Today I actually rode in the highest gear for most of the ride.

I was a bit fatigued yesterday, but am trying to make myself ride anyway. It's not perfect yet, but better.

Additionally, I am drinking a protein shake every morning either before or after the ride. This morning I had 2 Rome apples and cashew nut butter for breakfast and a half a cup of coffee. That flushed my system before the ride and gave me lots of energy. The protein shakes seem to be helping me with muscle recovery that has been such a challenge with dermatomyositis.

Just feeling like exercising is a huge improvement! I was beginning to be concerned about the onset of depression. Exercise is key to keeping my spirits up, but have been fighting it for so long ... just not feeling it.hy

The Biggest Loser - Changing a Person's Belief System

I am not much of a TV watcher - at least not until this last year. My partner watches TV like the average American: 3-4 hours a day. Amazing those statistics. But with muscle recovery being an issue, it has become more of a habit to lie down in the evenings elevating my legs to get the water off and reduce muscle fatigue. And, it has been an interesting year of television.

The Biggest Loser

The most recent show that we have started watching for the first time ever is "The Biggest Loser". With us both being particularly sensitive to this years weight gain and all of the emotional issues associated with rapid weight gain - or chronic weight issues - it is an intriguing show. I didn't realize that it was in it's 16th season already and has grown to include resorts around the country that help people with serious weight issues.

I think what I have liked most so far is that the coaches recognize the emotional baggage that weighs a person down literally to massive weight gain. I like that they are dealing with the emotional issues as part of the bigger picture with an understanding that until you deal with the emotional reasons for weight gain, a person may lose weight, but will eventually put it right back on.

Emotional Baggage/Weight

This has been a year or four of dealing with deep emotional issues in my life that have caused me to have numerous habits and attitudes. Watching this show is making me take a second look at emotional issues associated with the weight gain - other than what I've already blogged about: the dermatomyositis, anemia, sugar, prednisone etc... because ultimately, we emotionally and subconsciously do things to ourselves to sabotage our future depending on our belief system.

Your Belief System Drives You

There is no greater drive than our belief system. Every decision we make is based on our belief system. If it is faulty or been created by a set of false beliefs through misinterpretation of experiences or memories, then it can drive us to destruction. Also, if we have been programmed by those who raised us to have negative attitudes about ourselves, then it is faulty programming - because why should you believe what someone else says about you?

To me the first step in getting well is to begin to appreciate yourself through your eyes only. Sometimes you have to step away from what you have heard about yourself your whole life and create your own image - actually get to know yourself - honestly. Maybe some of the things people have said are true. But maybe, just maybe, they are not. Own the things that are true, and disown the things that are not true.

America is a great place for reinventing oneself. I've done it several times in my short life time. When what people around me were saying did not match what I knew to be true in my heart, I had to find new people to talk to. I've walked away from life long "friends" much the same way we expect an alcoholic or drug addict to walk away from a life style that causes harm. Some times you have to choose what is best for you and negative talk even from people closest to you is not what is best for you.

A New Perspective on Television

It will be interesting to see how the participants of the show this year progress through dealing with the emotional baggage. I'm proud to see them do it and know that it is inspiring others to do the same. Mostly I'm glad that watching TV has not been such a bad thing this year. I've been inspired. Thank you "Biggest Loser."

Anemia - Little known side affects

Since being diagnosed with the dermatomyositis, it's been a challenge to feel good and maintain a steady habit of exercising. I weened myself off prednisone a little over 2 years ago - trying to get the weight gain associated with prednisone under control.

Unfortunately, the prednisone weight did not fall off as my doctors had said it should, and as my friends who had also taken prednisone had said happened to them. In fact, not only did I maintain the weight, I gained more weight.  

Your Immune System

Most people do not realize that proper digestion takes measured amounts of vitamins and minerals. Depending on what you eat, digestion takes more or less of those vitamins and minerals. Additionally, for your immune system to function at its best capacity, your body also needs measured amounts of vitamins and minerals.

The most difficult and sapping item to digest is processed sugar. It requires large amounts of vitamins and minerals, which is why when you are sick, you should avoid sugar so that your immune system can function better to heal you or fight infection.


Based on this premise, a person with an overactive immune system, like myself, can calm the immune system down by eating sugar. Supposition:  If I have high amounts of vitamins and minerals in my body from either taking a multivitamin or eating high quality foods, I find that my immune system is over active and my dermatomyositis gets worse. Similarly, patients with Lupus are cautioned not to eat vegetables with Vitamin K because it make the Lupus, also and autoimmune disorder/disease, more aggravated.

Because of this, and in an attempt to stay off the prednisone, I was eating refined sugar to keep my immune system from being out of control. So I eat a healthy diet, feel my immune system becoming over active, I eat sugar. I try to exercise, but the slow muscle recovery - a side affect of the dermatomyositis - made me minimize my work outs. Over time, I just continued to gain weight. Even though my immune system was being kept in check without meds, I was unwittingly causing other problems.

Benefits of a Blood Test

I recently had a blood test that showed my cholesterol is borderline high, and I'm now pre-diabetic. All the sugar consumption has taken it's toll. I've gained over 50 pounds since my diagnosis 4 1/2 years ago and not been able to get it off. The other interesting thing my blood test showed is that I am anemic. I have been anemic before, but didn't realize how anemia affects your ability and willingness to exercise.

I did some research into anemia and exercise and found that low iron causes an apathy and lethargy in typical and usually active athletes in addition to the average "Joe or Joan". I never knew that and would never have considered that as part of the problem for me not being more active. Yes, the slow muscle recovery is a challenge, but combined with a biochemical reason that my body is resisting exercise has made it even more challenging.

Beets

As I often do, I try to listen to my body about what I need. I had been reviewing the different foods that help with inflammation because inflammation is the primary cause of the problems associated with dermatomyositis. (Inflammation is being recognized more and more as the cause of most diseases - and thereby identifying the foods and activities that cause inflammation as a preventative to inflammation and disease has become more prevalent in preventive health care and disease control.) Beets are an excellent source of iron, a liver detoxifier, and an anti-inflammatory. But what I didn't know is that beets cause the color of your urine to change ... especially if you have difficulty digesting iron!! Eating the beets made a huge difference right away.

I had been having the pre-diabetic and diabetic symptoms of being thirsty, having dry mouth , and having issues with frequent urination. Even though I recognized the symptoms, I refused to believe that I was actually pre-diabetic. No way ... not me. But then I had a rapid weight gain of almost a pound a week for almost 4-6 weeks. I was freaking out. Then I added beets.

The weight gain stopped. I actually lost weight immediately - both the recent weight gain, and started dropping weight I have had on me for the last 6 months. My thirst diminished, and so did the frequent urination. The other positive effects were that my brain fog and fatigue were also reduced. So now beets are a part of my diet almost every day. I continue to have the same benefits and weight continues to come off.

Anemia

The blood test showing the anemia was also an eye opener. And the research about the apathy. I did add an organic iron to my diet, and like the beets, the results are immediate and amazing. I actually feel like exercising and have started back to the gym and riding my bike. I am sleeping less (I was sleeping 10-12 hours a day) and have more energy and less brain fog. I feel like I am finally getting my life back. 

What I've Learned

While I thought that the sugar was a solution, over time, sugar has proven once again to be the killer it is known to be. In moderation a treat is not a bad idea, but not on a daily basis. Because I have been an active and agile athlete and then gone through this phase of not even having the desire to exercise, I can appreciate my good health even more. Of course I have compassion for others who suffer similar experiences, and I hope by blogging that at least one other person can glean some idea that takes them down a road to better health.

Why We Choose to be Sick

I was reflecting this morning on what I have learned over the decades with regard to health and healing.

Healing can come in miracle quickness, or miracle passage of time. Either way, healing is a gift freely given. So why doesn't healing come immediately through either medicine or prayer? The infinite question of mankind: why do people have to suffer?

Ponder three possibilities: 1) We choose to suffer, 2) Our suffering is as a result of the actions of another human being, or force of nature, 3) We are born with ailments with no explanation. To know which category your suffering falls under requires self reflection, honesty, and in the case of the first possibility, personal accountability.

For the moment, I'm only going to address the first possibility: We choose to suffer. Why would anyone choose to suffer, you might ask?

Original Circumstances

Unfortunately, when we are born, we are born into a set of circumstances we don't choose (or did we - but that is a subject for latter consideration). We are surrounded by adults who have the responsibility of raising us based on what they have learned and experienced in the process of becoming adults, based on what they believe, and based on what they choose for themselves that ultimately affects us.

Until we are the age of majority and can live independently, which ranges from 16 to 21 years depending on how ready you are to leave the nest, we are programmed by our circumstances and upbringing.

Now you are thinking, "This really is possibility number 2:  Our suffering is as a result of the actions of another human being ..." Yes, and no. Because when we leave the nest, we are ultimately responsible for ourselves. All that we experience as children either follows us for the better or the worse.

For example, if you were raised eating vegetables, you will most likely eat vegetables when you grow up - unless ... you were forced to eat vegetables - that you didn't like - and then you CHOOSE to NEVER eat vegetables again for as long as you live.

In this example, the way that the choice was presented to you impacts your future choices - AS LONG AS YOU LET IT. YOU made a decision at some point to NEVER do something again based on another person's presentation of the choice, but it was still YOU that made the decision. So you can remain entangled in an emotion that occurred possibly decades ago, or you can release the emotion to make a healthy choice. And this is why I say "We choose to suffer."

An Extreme Example

An extreme yet valid example is that of a young person whose life is so controlled by a parent that the only way that they know how to retaliate or take control back is to become anorexic - controlling his/her eating to a detrimental degree. It may be the only control he or she has over the parent, as well. It may be used as an emotional weapon to conquer the parent's attempt at being a dictator. However, the result is devastating on the young person.

So what happens when this young person grows up? As long as that person regards the parent as a controlling factor to be conquered, he/she may continue the cycle of anorexia. What happens if they choose to disregard the parent as a controlling factor, regarding themselves as the ultimate person in control of their life? That is being honest, conducting self reflection, and becoming accountable for their actions.

One must separate oneself from the controlling factor that is used as an EXCUSE not to do what is best FOR ONESELF, or one is in the position of CHOOSING TO SUFFER.

The Process of Change

Is this an easy process? No, of course not. Stubborn pride can prevent us from changing. Fear of FEELING controlled or out of control can also prevent us from changing. Few other things except Pride or Fear interfere with our choices to be healthier individuals.

If you truly self-reflect, the root of your un-health, in a situation where it is you who is choosing to suffer, is either based on Pride or Fear. Pride: you are unwilling to admit your choices are your choices. Fear: you are afraid of losing control. Change means feeling out of control for a period of time until a new habit is formed. Once a new and better habit is formed, the feeling of being out of control will go away because you are now in control of the new habit. You have successfully created, by your own choice, a new habit that benefits you.

What happens when the emotional injury is deep? It takes longer to recover, but recovery is possible if you CHOOSE - if you have the capacity to choose. Most people have the capacity to choose.

Where do you start? You start with changing how you think about yourself and your circumstances. Regard yourself as an intelligent human being who may make good choices for oneself because you CHOOSE to respect yourself. If you don't believe yourself to be that person, if you have low self esteem, low self worth, then you have the challenge of finding your worth first. For that I recommend you read my other blog: Love Your Neighbor As Yourself.

**Although the example of anorexia was used, the author understands that there are many reasons a person may become anorexic. Relationships with parents is only one. This is not intended to be a diagnosis, or statement of absolute fact. It is merely an example based on research and personal experience with those who have suffered from anorexia for the reason cited.

Love the Sauna

You can eat healthy all day long all year long. But if you don't take time to exercise and relax, you are missing the benefits of a healthy eating regimen.

How often have you gone to bed restless? Ever heard of restless leg syndrome? Sometimes I have so much good nutrition in me, my body is literally jumping up and down saying - "Go EXERCISE!!" All that nutrition would go to waste if I didn't get outside for a walk or a run, or to the gym for a great class or work on the treadmill, or into the pool for a swim.

But we can exercise and exercise and exercise and forget that our body and brain sometimes just needs some peace and quiet. Have you tried your gym's sauna yet? OOOoooohhhh, the benefits of the sauna!!

The Benefits of the Sauna

We live such busy lives with our immediate technology that keeps our brain a buzz. If you want to maximize your world, then step into the sauna for a breather.

Typically, you spend no more than 15 minutes at a time. What does it do?

1) It allows you to be quiet for a moment - unless, of course, you are accompanied by some chatty people. Typically, its quiet. The quiet is a great stress reliever, and the heat in the relaxing environment increases endorphin production - the happy hormone.
2) The deep heat penetrates muscle to bone increasing your circulation. It is great before a work out to thoroughly warm-up your muscles and prevent injury. It's great after a work out to increase the circulation and decrease lactose build up in the muscles that cause that stiff soreness from a hard work out.
3) The heat from the sauna has been shown to increase the production of white blood cells, boosting your immune system and fighting disease.
4) The heat induces the sweat that flushes the toxins out of your body also helping to fight illness.
5) By inducing the sweat and flushing toxins, your skin as an elimination organ is free to regenerate healthier cells making it smoother and younger looking.
6) Just as with exercise on a hot day, the heat of the sauna causes your heart rate to increase in an attempt to cool you down - just as sweating is the body's attempt to cool you down. The affect is improved cardiovascular function. If you follow the sauna with a cool shower or jump in the pool, you further stimulate the heart. Your heart muscles get exercise in a relaxed environment. It is an easy comfortable way to increase your cardio - especially if you are recovering from an injury and can't be doing what you usually do.

Where do I find a Local Sauna?

I actually have used a sauna in several different places. Right now I belong to a gym that has a sauna in the ladies dressing room. The men have one too so that they are separate for people who prefer the sauna in skimpy or no attire. I have also seen a coed sauna in the local YMCA. My previous chiropractor had a sauna in his office with a tech that would do herbal wraps, which are a dream!! You can either have a professional wrap you, or buy the kits to take with you into a public sauna like the one at the gym. High end salons typically have saunas and will also do the herbal wraps.

There are also companies that will bring the sauna to you. You can have a sauna installed in your home if you truly want a private quiet moment.

Do Your Research

As with anything, do your research, and if you have a special medical condition to take into consideration, check with your doctor first. Accountability leads to responsibility and good health. But what ever you do, DO NOT IGNORE THE BENEFITS OF THE SAUNA. You will be so happy you have discovered this gem, if you have not discovered it already!!

Emotional Healing

It has been my experience that some people I've met who have some sort of debilitating illness have a source for that if it occurred during adulthood. Most illnesses can find their roots in a traumatic experience, which may have resulted in any number of negative emotions: fear, hate, anger, resentment, abandonment, unforgiveness, anxiety, self hatred, vengefullness, sarcasm, etc... the list is lengthy. These emotions held inside without resolution may - and usually do - cause a physical symptom to occur.

Louise L. Hay in her book You Can Heal Your Life, and Karol K. Truman in her book Feelings Buried Alive Never Die both address this phenomena. After I was diagnosed with the dermatomyocitis, I had to take a huge look at the source. Both of these books were recommended by a Naturopath that was assisting me in finding the source for my dis-ease, as Louise Hay likes to put it.

Heartbreak Hurts

If a person who is generally healthy, eats right, exercises, has a positive attitude, and all of a sudden becomes ill - something happened. In my case it was stress and heartbreak. I can honestly look at my life and my symptoms and know that the two are linked. Nothing else happened prior to my getting sick, no change in my diet or routine, just an abrupt nonsensical end to a relationship that I cherished.

When that happened, I had to re-think everything that I had done to lead to that moment in my life. What had I done? How had my choices gotten me to that place? and How was I going to keep from repeating that tragedy in my life.

Since then I have recognized a pattern of unhealthy relationships that took me down this road - each one similar to the other in some way.

Be responsible with your decisions

We are ultimately responsible for our decisions. We can either repeat patterns of behavior, or recognize them, change OUR mind, and make different decisions. I chose to change my mind.

With the help of the two books mentioned above, a prayer life, journaling, and time out of a relationship and choosing to be single while I heal, my body has been recovering. None of the healthy tactics I had used previously worked. I was healthy when I got sick. This was clearly an illness resulting from dis-ease in my psyche.

Why am I telling you this? Because sometimes you have to take a look at this emotional part of your life to determine why you are ill. You have to be willing to look inside, reflect, and be real about your emotions. Emotions are an important part of who we are as people; however, emotions are either helpful or detrimental to our well-being.

Making relational changes

I recently had to sever a relationship with someone whom I love dearly because their constant dwelling on the past, holding grudges, unwillingness to forgive, and negativity created an insurmountable barrier to peace between us. It was a source of constant negative emotions hurled in my direction that was keeping me from healing completely and functioning normally.

Madea said it best

Madea said it best when she said: "Some people are meant to come into your life for a lifetime, some for only a season and you got to know which is which. And you're always messing up when you mix those seasonal people up with lifetime expectations.

I put everybody that comes into my life in the category of a tree. Some people are like leaves on a tree. When the wind blows, they're over there... wind blow that way they over here... they're unstable. When the seasons change they wither and die, they're gone. That's alright. Most people are like that, they're not there to do anything but take from the tree and give shade every now and then. That's all they can do. But don't get mad at people like that, that's who they are. That's all they were put on this earth to be. A leaf.

Some people are like a branch on that tree. You have to be careful with those branches too, cause they'll fool you. They'll make you think they're a good friend and they're real strong but the minute you step out there on them, they'll break and leave you high and dry.

But if you find 2 or 3 people in your life that's like the roots at the bottom of that tree you are blessed. Those are the kind of people that aren't going nowhere. They aren't worried about being seen, nobody has to know that they know you, they don't have to know what they're doing for you but if those roots weren't there, that tree couldn't live.

A tree could have a hundred million branches but it only takes a few roots down at the bottom to make sure that tree gets everything it needs. When you get some roots, hold on to them but the rest of it... just let it go. Let folks go."

What type of person are you?

If you are the person that is ill, you need to decide what type of person YOU are to yourself and to the people around you. Are you a constant source of negativity that drives people away? Are you always sick? Are you trying to heal but don't want to let go of the personal injuries you choose to own?

Or are you ill because of the choices you make? The people you continue to associate with that bring you down?  Are you comfortable in your dis-ease? Is that all you've ever known? and wouldn't know what to do if you were healthy? happy? or had a good relationship? Do you believe you are unworthy of happiness or a good relationship?

If any of those questions make you angry, then the answer is probably yes and you are dealing with an illness tied to your emotions.

In this case, the choice is completely yours. There is no doctor or therapist on the planet that can help you until you decide to help yourself and let go of your present circumstances and way of thinking - or nothing will ever change.

Do you want to change your life?

If you do want to make a change, I recommend the books above, and my other blog spot for starters:
matthew2239.blogspot.com titled "Love Your Neighbor as Yourself - You First."

There was absolutely nothing that I could do in the way of healthy eating or medicine that helped me heal through the dermatomyocitis. The meds kept me from getting worse and eliminated the symptoms to some degree. However, the symptoms were consistent with my emotional state, and I had to work through healing those emotions.

I am off meds and on the mend. I feel better, and I am getting smarter with the emotional choices that I make and the company I choose to keep. Remember: I choose. I took responsibility for my state of being. I made the choice to change. I cannot pass the blame onto my circumstances, or the people involved in my life at the time all this occurred. And neither can you. You must choose your change. You cannot blame anyone including yourself.

It's a New Year

This is a New Year with new possibilities. It is the perfect time to look to the future and decide what that will look like for you. I wish you all the best and blessings for a happy and prosperous healthy you future.