Integrity

I’d never given much though to the meaning behind the word integrity. I knew integrity meant having morals and values and abiding by them. However, in reading, “Further Along, the Road Less Traveled,” By Scott M. Peck. M.D., he provides a more complete definition which is, “the state of being whole and undivided.” Basically having all of you be integrated. Being consistently you in every situation. When you think of integrity in this way it is much more profound. You can’t be you consistently if you don’t know who you are. You can’t be you consistently if you have fear of showing that self to others. Many people including myself have played the role of a chameleon at times. It takes real courage to be you at all times. A true level of honesty and vulnerability that most people are afraid to have. Committing to integrity has its price.

Many people I believe mask their emotions to others. Especially in business, it is almost expected for you to do so. To some degree this makes sense as you wouldn’t be successful operating under hysteria. However, as humans, emotions come with the gig. To expect someone to operate without them or to mask them expertly at all times is unreasonable. My honesty to myself and others about my internal state of emotions and thoughts are one area where I display high levels of integrity. This has not always played well in my favor. Especially during the years where my internal state was extremely volatile. My moods still, if I am not consistently using my tools and being mindful, can fluctuate unexpectedly. To some degree this is a part of just being human, moods and such. Having struggled with a mood disorder though for many years, my mood shifts are much more extreme than the average person.

In retrospect, I’ve wondered would I have a less muddled image if I had a better poker face? A better reputation if I were able to better hide my energy and emotions and put on the mask that many people are savants at wearing?

Brene Brown when she talked about vulnerability said:

“Our stories are not meant for everyone. Hearing them is a privilege, and we should always ask ourselves this before we share: “Who has earned the right to hear my story?”

I’ve always struggled with this sort of discernment though. I’m not sure I’ve ever made anyone “earn the right” to hear my story. My story is always here, accessible, and available. This could leave me in a place to be hurt, if I allow it to hurt me. It feels like I’ve trailed off from my topic a bit, but I think these are connected. My struggle with sharing who I am, my internal state, as a form of integrity. Should I be making people earn that right? Is a lack of discrimination in who I am honest or openness with, integrity? Or just stupid recklessness?

Living with Inverse Acne

I’ve decided to write about the disease that I have had since I was 15. The one that has tormented me and left me scarred mentally, emotionally, and physically. I’ve just recently begun trying to open up about the condition. Today I wrote a blog on shame and one of the ways out of shame that I had researched and read about was to open up about it. This disease causes immense shame, depression, and anxiety due to the ongoing stigmatization of the disease.

What is Inverse Acne you might be asking? It is formally known as Hidradenitis Supporativa (HS). HS is an inflammatory disease which causes lesions that typically form in areas where skin folds exist and where hair grows more significantly. The most common places for it to occur are in armpits, groin, under women’s breasts, and the anal areas. It can occur in almost any area on the body however. It can be hereditary, and it was handed down to me. As with most diseases, obesity and smoking are linked to worsening HS conditions.

The disease typically starts around puberty and thus has been thought to have some sort of hormonal linkage. I myself started seeing flare ups around the age of 15. I remember when I finally got the courage to ask my mother about it, she told me she too got them, and basically that it would go away. I wasn’t provided with any more information on the condition or ways to treat it. I know now this is because my mother has never been provided with that either. It is hard to get a correct diagnosis with HS and even harder to find someone who knows enough about it to provide effective treatment options. Many times it goes undiagnosed because patients are too ashamed to mention it.

There are 3 stages to HS. Stage I is a single bump with no sinus tracts. Stage II is more than one bump but little tunneling. Stage III is multiple bumps with a lot of sinus tracts and scars involving an entire area of the body. People can be in different stages at different times in their life and they can be in different stages in different areas on their body. They may have for example stage I in their armpits but stage III in their groin area.

There are a couple myths concerning HS which I will mention:
1. You have HS because you are overweight. People of all sizes have HS. Weight can be a factor in worsening HS flares since it creates more areas on the body for skin folds to rub but it does not cause HS. I lost over 100 lbs once and I did see a decrease in flares but it did not get rid of the condition. I still had flares when I was my optimal weight.

2. You have an STD. HS is NOT an STD. It is NOT contagious. Because HS regularly appears in the groin and genital area it can cause fear that it will be mistaken for an STD. Because of the area/location for which these occur (in the groin) area it can create poor body image and make sexual relationships challenging.

3. You’re dirty. Cleanliness can help manage HS but it does not cause HS. Because it is a skin condition staying clean can help the healing process but if you have HS it does not mean you are dirty.

HS is an inflammatory disease and there is no cure. Some patients go into remission in their later years, my mom however is 67 and is still dealing with the condition. Therefore, I do not hold too much hope for remission.

There are a plethora of treatment options out there and from my over 20 years of experience very few are effective. The issue with HS is that each person reacts differently to the various treatment options. What is effective for one person is not necessarily effective for others. For years my dermatologist had me on various doses of low grade antibiotics, such as moxifloxacin and doxycycline. Neither of which did much to prevent or lesson issues concerning flare ups. I was once told by an ER nurse who had to lance one of my lesions to be sure to change my wash clothes and towels after every use. Which is a practice I have continued to follow for the last 10 years. Again not by way of helping much.

Over the years I have had several areas that have had to be lanced including my stomach and back. Around 2015, I under went my first surgery for HS. What can happen with HS is the infection if it goes away and continues to resurface in the same area is it can eventually cause tracts of infection that form underneath the skin. When it gets to this point there are very few options of treating it outside of surgically excising the infected area and enough of the surrounding tissue in hopes of preventing its reoccurrence. The area I had my first surgery on was my stomach. The area directly below my belly button. I got flare ups in that area due to my weight and my skin overlapping in that area causing friction with my clothing.

Outside of weight, friction, and tight clothing, other things that can cause flares are excessive heat and sweating. Stress is also known to cause flares as well as some people report food as another flaring agent.

When I moved to Florida in 2016, I didn’t immediately notice a difference in my HS. Then around the beginning of 2017, I decided to really do something about my weight. I started walking very vigorously every day, sometimes multiple times a day. With that I did manage to lose 20 pounds. But between the heat and the weight causing friction in my groin area I developed several lesions which kept reoccurring in that area. Never really knowing how to treat them in the past I continued to exercise and just hoped they would go away.

It didn’t. It continued to get worse. In 2019, I ended up having groin surgery where about a 5 inch incision was made along my groin and labia majora. The whole process was extremely embarrassing and emotionally painful. Having to go to doctors and spread em’ and allow for the area of your body that you are most shamed of, to be seen by others, by strangers. As a female, this is one area you truly don’t want to have to be dissected and scarred.  I would have gladly taken back the 20 pounds I lost if I could have gone back and prevented the lesions from originally forming. That is the rub, not intending to be a pun, but that is it, you want to lose weight to help with body image issues and to help prevent flares but exercise can be challenging as it can cause flare ups. I am fortunate that I have a swimming pool. Swimming seems to be one of the few activities that I can do that don’t cause flares.

After my last surgery, I started seeking additional help and treatment options. I found a doctor in Miami who specializes in HS. I also found a couple of different facebook communities. Between the two I have learned several things I have been implementing over the last 9 months, with some levels of success.

I’ve learned that some of my flare up triggers do come from food, stress, being overweight, and heat/excessive sweating/rubbing. I’ve begun incorporating swimming into my life 3 to 5 times a week (depending on weather) to try to continue work on getting myself into a healthy weight. I now pay someone to do my lawn and landscaping work. I enjoy doing that work myself but with Florida humidity I’ve become too afraid that it could cause new flares. I’ve also changed my diet completely. The items they mentioned as general culprits are dairy, night shades (such as peppers and tomatoes), and grains. I have eliminated most of these almost entirely, with the exception of my occasional relapses with grains. I’ve been trying to practice mindfulness and doing yoga daily to help manage my stress. When I get stress not only does it trigger flares but I am prone to stress eating and when this occurs I typically eat foods known to cause flares therefore, doubling my chances of flare ups.

When I do get a flare up, that experience in itself is stressful. There is a lot of fear that it is going to be the flare that is going to become problematic, the new lesion that will put me back in the surgeons office to have additional parts of my body carved out. More scars. Because of this fear I am generally very hard on myself when I have flares. I blame myself, like, I shouldn’t have eaten that, or I am not doing a good enough job practicing mindfulness. I need to learn to have more compassion with myself. Even though I do fall short in some of these areas, this is a disease, and even if I managed everything perfectly I would still get occasional flares.

Here is my current regimen I am following to try to prevent flares using information I’ve gathered either from the HS support groups or my doctor. This is in addition to the diet, swimming, and avoidance of excessive humidity/walking that I previously mentioned. Every morning I take a daily probiotic, 50 mg tablet of zinc, a multivitamin, and 500 mg of Turmeric. I take a hot as I can stand it bath for 20 minutes, 4 to 5 times a week. In that bath I put 12 drops of oregano extract oil, 12 drops of tea tree oil, and lots of epsom salts. All of these are known for treating inflammation. The result is I smell like Italian food. On days I don’t bath, I shower with my fresh wash cloth using the recommended soap, Dove for sensitive skin, and I use a benzoyl peroxide acne cream wash. I dry off from showering with my fresh towel and then apply Clindamycin to any active flares. Clindamycin is a topical antibiotic treatment to help prevent as well as treat active HS flares.

With everything that I just expressed that I am doing, I report that I continue to get flares. Doing these treatments even with minimal success however allows me to feel somewhat empowered which does provide some hope. My most recent doctor suggested I try Humira which is a biologic that is used to treat things like HS, Psoriasis, and Rheumatoid Arthritis. It is an injectable, and something I’d have to inject once a week. When I researched the side effects they were extremely scary. The reason Humira helps these conditions is because it decreases your immune system which lowers inflammation. I opted not to try it for now and to continue trying to manage it using the regime I described above. I’m grateful that had been my decision because shortly after the Cornoa virus emerged. Many people with HS who were on Humira have had to stop their treatment temporarily due to fear that it will make them more vulnerable to Covid-19. I’m not saying I will never try humira. If managing it through this other regime proves to be ineffective and my condition worsens I’m sure I’ll become more willing to try other options. Fear and pain are great motivators.

The main purpose behind me sharing all of this is because I’m tired of being ashamed. I’m tired of being afraid to talk about it for fear of being judged, pitied, disgusted, and/or rejected. I started opening up about this with my sponsor and my therapist in 2019. In fact it was my sponsor who was kind enough to take me to and pick me up from the hospital after my groin surgery. I then most recently briefly mentioned it in a podcast that I did. I am beginning to share about it more openly. Just as coming out as being gay was painful and scary to talk about initially it was necessary for me to heal and for self-acceptance. I feel like this is the beginning of that process with my HS. Let the healing begin!

Boundaries

What are their motives?
If you learn to listen, they will be made clear,
The healthier I am,
The more I can hear.

Most, simply doing the best they can,
Taking this into account,
As I observe from where I am,
Each person trying to meet their needs,
Even if they are unaware of what they are.

Amazing vessels in which we reside,
Consciously we feel the craving,
Physiologically the body understanding what is needed inside,
Each of us seeking to meet these requests.

Discerning where your energy is spent,
More easily decided,
Based upon others intent,
No longer needing to fill an empty hole,
More thoroughly understanding my own worth,
Puts decisions back under my control,
Able to set boundaries,
Aligning my environment with my long term goals.

Having compassion,
Leaving space for whatever that relationship may be,
But only committing to actions,
Toward the path that always keeps me free,
Free from emotional deflections, limiting perceptions, social bondage, spiritual blockage, energy deleters, and dream disbelievers,
Choosing my circle wisely of spiritual seekers, passionate dreamers, enthusiastic supporters, and tenacious warriors,

Capacity to think more in the gray,
Which provides allowance for others to be how they may,
Non-judging but acknowledging my right to live my best life,
Which may or may not include you today.

 

Sleepy Thoughts

How amazing it feels to not be where you were and when someone is capable of taking you fresh from where you are. How long past impressions linger within others is unfortunate. We like to put people in categories based on our past experiences. We are so flawed as humans, seeing things from where we are. Through the lenses of our past experiences, our desires, our conditioning. It makes acceptance of others more challenging. I used to carry so much with me, anxiety, weird energy, paranoia, and defensiveness. This is what people saw. Now people comment saying, “you seem happy today what is going on?” What’s going on is I am no longer the person I once was. On most my good days, I can live presently without stories, allowing me to have an open energy and lightness about me I didn’t once have. I guess only repeated behavioral patterns over an extended period of time will change the existing perceptions others have of me. As recovery would say, “10 or 20 years of drunkenness would make a skeptic out of anyone.” I can’t fault them as I too judge others. It is just refreshing when I am embraced anew, without having to prove that change to someone.

I am now able on good days to ground myself and walk into situations with a sense of openness and curiosity. Not assuming the worst of others or feeling scared, guarded, or defensive. To do this required me to be willing to journey inward within myself and look at my own thoughts and emotions with a sense of openness and curiosity. When I start feeling some sort of way I no longer need to run from the feelings, numb them, deflect it onto others, or use it to beat myself up. I can simply look at it with space, neutrality, and curiosity.

I’m exhausted but I had an amazing conversation tonight with an incredibly intelligent and beautiful woman. I got to listen as she explained how she observed and broke down the feeling of jealousy. I love that. It was such a big deal to me when I was able to finally see something energetically shift within myself and not get drawn into it. The first few times it happened were in recovery meetings. When I would share and someone after me would share something either in agreement or what I interpreted as disagreement to what I shared. I noticed this very strong stir of emotions would well up inside. I didn’t know exactly how to interpret it other than to just label it as ego. I was attached to my words and others either accepting or discrediting them caused thoughts to generate which would tell me stories about my worth or people’s acceptance of me. This was especially true on topics I felt more strongly about such as spirituality.

Something else I realized while talking to this beautiful woman is something I do pretty regularly in many relationships and in general. Which is comparing. Comparing my life, my activities, my skills, my relationships to others. Which is such a silly thing. We are all so uniquely different in our personalities, our needs, our goals, and overall physical, mental, emotional, and spiritual paths. How can you compare??? But yet, it is still a repeated pattern for me. This I definitely feel is the thing reoccurring the most in my life right now, breaking this will provide tremendous freedom.

For some reason this made my thought process go to Buddhist Monks and the mandalas art they do in sand and then immediately destroy. I think the act of this teaches so many things. It allows for practice of acceptance and letting go. It removes the capacity for comparison.  It is the practice of doing something for the love of doing it without the desire for acknowledgement or acceptance. Doing something without trying to derive your self-worth from it. In the past, much of what I posted and did was for recognition. I do not want to portray that I am free from this quality as I think I still do this frequently today. I am aware of it though. There is so much inside that must come out. Releasing that need for recognition or acknowledgment allows for much more creative expression in your art or craft. The reward is the very act of expunging whatever needs to be expunged whether that be a blog, a drawing, or a speech regardless or not of it ever been seen or heard. You cannot be a failure when you are simply having the courage to share for the sake of sharing. To create for the sake of creating.

Recovery

Peers at work ask me about my plans,
Anything fun?
Yard work, perhaps some homework,
No doubt my life from the outside probably sounds lame,
Perhaps if I told them the whole truth they’d still think the same,
I drive to a church where strangers meet,
To sit in a circle and reflect,
In this divided society,
We sit and connect,
What my peers don’t know,
Is that I’m in recovery.

It was Saturday, talking to a girl from the other coast,
What’d you do tonight she’d ask after coming home late from a party,
I went to a meeting…
The conversation would shift, eventually we drift,
Clearly her night was better?
That Saturday I listened to someone share about their bottom,
Bringing back memories of the things I did when I was blacked out on alcohol,
I went home feeling lighter,
What were my problems? … I don’t recall,
Just another night of rolling around raw in vulnerability with others,
What a blessing,
Truly humbled,
I’m in recovery.

What is it that you do for fun? I assume normal people wonder,
The answer is anything,
I’m no longer encumbered,
Fear does not hold me back,
My fun no longer requires me to numb,
Most days I am happy with a cup of coffee, two people, and simple talk,
I have peace today in this life I walk,
Early on it was, “why’d I have to be this?”
Now I’m ecstatic that I get to live a life of service,
Continued growth and self-discovery,
Each day I get the opportunity to be a better me,
I’m in recovery.

 

 

 

 

Morning Meditation

The dog barks from somewhere outside,
High pitched shrill barks,
A small dog for certain, Perhaps a Maltese…
Clearly unhappy for being left,
Is this an irritation? Or an opportunity to become present?
The cooler which contains the 5-gallon jug of water,
Buzzes and rattles as it seeks to cool the water,
Smacking it will only cause it to reside briefly,
Is this an irritation? Or a reminder to return to the present moment?
The dog stops barking, the cooler ceases running,
Quiet. Lack of noise. Silence seems so profound,
Gratitude for the noise, causing the absence of it to bring great peace.

Sensing the body, how is it today?
Appreciating all the areas that don’t ache,
No tension headache,
The lower back is tolerable, the left knee feels great.
Enjoying a full breath.
The air is refreshing and cool as it flows through the nose,
Expanding the lungs in a fulfilling stretch,
Sitting deep inside this body.

Observing the mind as it tries to find problems,
After all, that is the job it has been given,
To find and fix problems.
The dog begins barking, bringing back the present.
Breathe. Set intentions for the day. Begin.

Compassion?

Where do you find compassion?
Where does it hide?
Why do I have so little?
Why am I so mean to me inside?
Others recommend, treat yourself as you would a friend,
Unfortunately, I am also hard on them.
If I have no understanding of my own mistakes,
How can I have any for yours?
How do I cross this ocean of self-damnation to forgiving shores?

It’s hard to see a future when things will be different…when I will be different,
When you’re in your emotions things feel like they will always be the same,
Looking back I know, that statistically, this isn’t true,
As long as I keep seeking change,
My circumstances will change and I will too.

Someone said recently, that what kept him going was the thought,
That what if tomorrow is the day when things will get better?
Castaway said it best, “So now I know what I have to do. I have to keep breathing. And tomorrow the sun will rise, and who knows what the tide will bring in.”