New Physical Malady Intersecting with Existing Mental Illness Equals a Flare on Both Sides

I know I have blogged briefly about my skin issues and recurrent staph infections and the like, and now I have an official diagnosis:

Hidradenitis Suppurativa

You can read all about it in that link, or you can just know that it is a very painful autoimmune disease, with a genetic component, has no cure, and basically a person with this disorder has sweat glands that never developed correctly and is plagued with boils, nodules, and blisters that develop most often in places where skin rubs together.  It is considered a rare disease, there is much conflict about how to treat it (from surgery to antibiotics), and it is really hard to find a doctor that knows much about it.  There is a great deal of stigma around the disease, as misinformation abounds and let me just say that it is NOT caused by poor hygiene and it is NOT caused by being overweight (although some people anecdotally find relief by going on keto diets).  It is believed that everyone has different triggers for flares, and so far I have found that my main flare is stress.  That is a relief, of course, since heaven knows I have no anxieties or great fears or stress.  Hahahahahah!!!

I have actually be unknowingly dealing with this disease for years, it has just now reached the point where it is much worse and is needing treatment.  I learned of the diagnosis a week ago, and, rather than being disappointed in having yet another label to my name, it is actually helpful because now I can research and pinpoint and see what might help me.

I have my primary care doctor making a referral to the premiere teaching hospital in my area, basically the same place where anyone goes when they have a rare or serious disease and is not receiving adequate care locally.  I am hopeful to have an appointment within the next few weeks.  In the meantime, I am just trying to minimize pain, not aggravate things, and learn all that I can.

This flare in HS symptoms has created a bit of a flare in my depression and anxiety, which were on the uptick before I even knew this was what I was dealing with.  I am trying to stick to building structure and building mastery, as in keeping a schedule and trying to do new things out of my comfort zone.

LarBear has not been well lately, and it is becoming clear to me that I need to at some point learn that YES I CAN go into a grocery store by myself or go into a gas station and pay for gas or all of those little tasks that he takes care of so that I can pretend I don’t exist in the world and keep me from interacting with anyone.

I am midway through this current round of DBT group, and have discussed with my group leader, and I am going to at the very least take a break after it is done.  I have about six more months in this module, so its not coming to an end anytime soon, but I really feel the need to leave myself the possibility of more sessions in the future (insurance limits to four) and I am also getting slightly bored with things.

I have been having the hardest time leaving my house, and I think part of that stems from the fact that my house is so comfortable and clean and chaos-free now.  I do a lot of sitting on the porch and listening to music and writing, but have not been doing much crafting.  I really feel as if I have no talent whatsoever and I especially feel like I am wasting my time in art therapy.  Ok, I’m painting, but I’m horrible at it.  I am a failure at it.  I really just don’t feel a creative bone in my body other than writing.  At least I still have writing.

I went through a meltdown earlier this week because I decided that I was not entitled to the depression I have been feeling.  I mean, life is GOOD, I just feel so very sad.  Very, very sad.  I can’t explain it, and I can only hope that working on building structure and building mastery and trying my hardest to stay busy will bring me out of it.  That, and my med doc has given me a tiny dose of an antidepressant that is an SNRI.  Just hoping it doesn’t make me manic.

So, that’s life for now and I’m going to keep on living it.  My survival rate to this point is 100% and I intend to keep it that way.

Gaining Freedom from a Stilted Life

via inkbeauty.wordpress.com

Wow, how things do change.  I mean really, completely, 180 degree change.  So much of me, who I am, what I do on a day-to-day basis, who I love, what I tolerate and don’t, what I strive for and what I brush to the side, what is important and what can wait…it has all changed.  None of it has changed overnight, but I would say that I am a very different person than I was in, say, 2012, when I had to give up on my last job and start the arduous process of re-inventing myself.

And again, in 2014, when a relationship had laid me out, broken in pieces on the floor, and it was necessary to re-invent.  Finally again over the course of the last two years, more re-inventing, and now, more knowing who I really am.  Finding yourself and finding recovery, finding things you never thought possible about yourself, coming to different conclusions about the same issues that had tripped you up over the years, coming to grips with various events (traumas, even) with the use of radical acceptance and direct pleas to a power above and hour upon hour of therapy and quiet introspection.

The most basic thing that has changed, with all of this reinvention and acceptance and coming-to-grips-business, is that I have destigmatized my mental illness, at least TO MYSELF.  I don’t see myself as bipolar Rosa anymore.  I see Rosa, who happens to deal with x, y, and z mental illnesses.  In my own head, over the years (many, many years), I had become my illness in my head, to myself.  I had boxed myself in, and put packing tape round and created this tiny little space that I thought I needed to live in.  It is only very recently that I realize that I can live in the world, and not just in the box, and it is even more recently that I can put words on it.

Three wise women (Thank you, Mom, Goddess of Mindfulness, and Marilyn) in my life have consistently reminded me that everything I go through is not due to a direct cause of bipolar disorder, or BPD, or PTSD, or any other label.  Much of what I go through, the hard times and the good times and most-of-the-times is just LIFE, and everyone else is also going through LIFE.  Sure, the disorders I deal with may affect my outlook on life, or may color my reactions to life, but a lot of the bad things that happen are happening, because life is happening, not because there is a certain label on my file.

I have more positive things going on, since I have accepted that I am not just a label, than ever before.  I have started my custom jewelry business, and am working hard at getting it off the ground, my symptoms are better controlled, I take better care of myself, I am a better girlfriend, and a better daughter and sister, I am exercising and I stay busy.  I am teaching myself from the ground up how to set boundaries with others, and while it can be altogether confusing, I am changing what behavior I will and won’t tolerate from other people.  I am reaching out.

There is a part of me that can’t believe that I am just now “getting this.”  There is a very small part of me that doesn’t understand why it took so long, or how I could have flailed for so long, but I try hard not to beat myself up about that part of it.  The point is that there is progress and there is moving forward.

This is all 34 years in the making, of course, and I’m fully aware that if I am not vigilant about doing the things every day that I must do in order to feel decent, that this could just derail and fly off the tracks.  Every day is a new challenge, every situation that comes about I am treating as new, teaching my mind and my heart how to do this life thing, and how to do it well.

 

I finally feel like I have some freedom, have some breathing room, and can be completely and totally and authentically Rosa, without feeling the need for a “yes, but…”  That is a big feeling, a huge feeling, a hard-to-describe feeling.  A punched-in-the-gut-and-can’t-breathe-feeling.  I finally see, life is strange, but it is also, so very beautiful, so very fragile, and so very worth-the-wait.

 

My World Needs More Than One Word

…to describe myself for International Label Day, 2013.  I was asked by Rara to join in with her in the celebration of this day, and you can find my “photo and label” here and below.  At first, I was rather leery.  A photo, with words on it!  Technology must be used!  Yikes!  I was also not sure I wanted to put a label on myself, so I chose a phrase.  See below, and go check out the rest of the people participating on Rara’s page.

I really think the picture and corresponding words say it all.  :D

I really think the picture and corresponding words say it all. 😀