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.

Oh Me, Oh My: A Lament

Now I lay me down to sleep

It occurs to me, 

I am not even close to ready

For this week.

Responsibilities abound,

I accomplished nothing the past days

Piles of laundry overwhelm

A few dishes in my tiny kitchen.

No idea how I can bribe myself

To leave the house in upcoming days

For therapies, for appointments, for any reason at all

There is the dreaded appointment

Where I may finally learn about my chronic staph infection

But I care so very little, even about that

I just want to stay home and maybe sit on my porch,

Light incense and read books and not answer the phone

Avoid all those people out there

Who just want to help

By talking everything to death, over and over

That I’m trying so very hard to pretend doesn’t exist.

I Have A Plan

I vacillate between trying very hard to use DBT skills and basic coping skills and all of the “tools in my toolbox” and throwing my hands up in the air.

The Rosa of the past didn’t believe in recovery, and the Rosa of the current still isn’t sure about “recovery” from mental illness, in general.  Do I think things can get better, yes.  Do I think they can stay that way, not really.

After my therapy session yesterday, I have come away with a few goals.  Goals that the Rosa of before would not have meshed with.

They are, in no particular order:

1) Daily hygiene every day, plus a bonus if I can put on makeup and try to pretty myself up.

2) Sun lamp 30 minutes, two times a day.

3) More time out of the house, doing what, it really doesn’t matter.

4) Eventually get back to the pool.  The staph infection issue is ongoing, so I can’t do much about this right now.

5) Stop thinking about the zebras.  You know, the zebras, the constant and negative thoughts that come from the brain.  Try replacing the zebras with a giraffe, or an elephant, or maybe a cute teacup pig.

I have come to the conclusion that I can’t fret about my weight too much at this point, because it is clear that it will be an extra-supreme challenge in which I may or may not have to make serious decisions.  The plan is to continue eating right, with small meals, and try to increase fruit/veggie intake.

Above all else, I will continue to avoid negativity and will cut it out of any corner of my life in which it will be lurking.  This may mean cutting some people out of my life, but so be it.  I actually went through the million blogs I follow and unfollowed some that are simply always so negative without even a hint of positivity or solutions that may be found.  Bloggers that wrote all the time about things that were triggering to me were deleted, too.  I hope someday I can come back and read some of those, but I simply can’t right now.  Chances are, it’s not your blog I stopped following.  Most of those people don’t read me.

I am going to have to do something different with jewelry/crafting, and I’m not sure what that is, but I’ll think of something.  I don’t think I am going to meet the October 14th deadline of having pieces in for the holiday show, but at this point I think it is more than I can manage.

I may be starting an adaptive yoga group that my art therapist is trying to get together.  I am excited about that.  As in, yoga I can actually do, maybe seated at a chair or in some other fashion.  I really hope she is able to get some numbers together so I can start that.

Day by day, broken down into manageable chunks, I will get through Fall, Winter, Hell of Winter, Spring of Winter.  I will because I always do, and there is no point in giving up now.

The Ten Things I Can’t Seem to Admit to in Therapy


This will end up being a list post, but I want to first interject that it is hard as hell living with mental illness and every good day should be celebrated.  Don’t get me wrong, there HAVE been good days, and there will be more.  Right now, what I am trying to purge from my system is all the negative stuff that I can’t seem to talk about in the place where I need to the most:

1) My nightmares have come to the point again where I am terrified of sleep, terrified of bed.

2) The stuff of nightmares keeps me from wanting to leave the house…like, ever

3)  I have not seen the inside of any type of store, including even a convenience store, in over two months.  I have not even tried.  There are people in there, you realize.

4)  I have been hiding my crying spells.  From my therapist, my med doc, my art therapist, LarBear, my mom, my dad.  I know what crying spells mean, and I don’t want anyone to know it is happening at an alarming rate at this point in time.

5)  I absolutely cannot manage without Klonopin at scheduled times throughout the day.  I keep trying to skip it, and I keep having breakdowns and am told to take my Klonopin.

6)  I am stuck with my jewelry.  It’s not fun to make, to plan, to do.  I feel absolutely defeated by the lack of activity on my Facebook page for it, and I end up giving it away because I don’t think it is good enough, anyway, to sell, and neither, apparently, does anyone else.

7)  I am very close to giving up on some various people in my life.  I decided a while back to no longer be in contact with my ex-step-father.  I am very close to that in a few other relationships.  I am tired of caring and not getting caring back.

8)  I don’t feel like there is a safe place for me to go whenever (if) home begins to feel unsafe.  They use the crisis house as an overflow for social detox — the award for fuckhead of the year goes to whoever made that decision, because if I am sick enough to be there, I am too sick to not be taken advantage by one of those addicts.

9)  My weight is at an all-time high, and I am not sure what else to do.  Sure, I need to move more, but I eat quite healthfully and smaller-size portions, and Seroquel (my psychiatrists guess) or the tides of the moon or terrible chemistry makes me gain ten pounds if I so much as look at a cheeseburger.  I have completely stopped bingeing, and I am gaining weight.  There seems little fairness in that.

10)  I get tired of feeling depressed constantly, so I often put on that mask that says everything is fine.   Dear Mental Health Gods:  I am really, really tired of having to do that.  Most things in my life are going swimmingly right now, can I please catch a break?

Dialectics in DBT

A wonderful explanation of the “what is” of DBT (Dialectical Behavior Therapy). A good read for anyone who is a person or who has contact with a person who is going through the DBT process.

Living with Borderline Personality Disorder

DBT stands forDialectical Behavioural Therapy. But what does this name really mean? Many of us will understand conceptually what ‘behavioural therapies’ are. But what on Earth is a ‘dialectic’?!

A dialectic occurs when multiple things – which are seemingly incompatible or opposite to one another – can both exist and be true simultaneously. For example, it is possible to be both happy and sad at the same time; to love someone and hate them at the same time; to be both scared but also willing and brave to push through that fear, at the same time.

The core dialectic in DBT is that of ‘Acceptance’ versus ‘Change’. Much of DBT is centred around balancing these two concepts. DBT aims to validate and acknowledge someone’s experiences as acceptable whilst at the same time flagging them up as potentially maladaptive and requiring change.

In many situations, dialectics can be especially difficult…

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Avoiding Self-Sabotaging Behaviors in the Mindfield of Current Happiness

Things are good, y’all.  I mean, really, really good.  LarBear and I are all moved into a really nice new (to us) home, things are organized, tons of junk and clutter has been purged, it looks good, hell, it even smells good.  There is nothing I don’t absolutely love about this new house.

And other things are good, too.  I started a mini dose of an antidepressant two weeks ago, and have had no manic symptoms.  I am slowly weaning off another medication that my psychiatrist believes is leading to my mysterious weight gain.

Things are going great with LarBear, have actually never been better.  I am in the most stable and healthy romantic relationship of my life.  We are a team and we lean on each other and we care for each other and we just make each others’ lives so incredibly much better than they ever have been.

I haven’t heard word one from my ex-step-father or any of his side of the family, and I am superbly grateful for that, and believe that has also gone a long way in minimizing my anxiety and stress level.  Getting rid of all that toxic negativity, it just did me such good.

So really, the problem is that there ARE no problems.  I went to therapy this week, and the first thing my therapist asked me, was what was I going to do to not sabotage the happiness I am finding?  Because that is what I do, it is what I have always done.  Happiness or contentment or joy have always been so fleeting for me, and it is always me chasing them off my own porch with a broom.

The answer to that question lies in many things.  First of all, how am I going to KNOW that I am sabotaging my happiness?  Well, I can spout out a short little list of things from just today that I have done to sabotage my happiness that range from picking a really silly fight (very short lived) with the LarBear to deciding to experiment with my Klonopin (as in not taking it even though I know that I really, really need it) to not taking a shower and getting dressed this morning (daily hygiene fail) to letting myself get too worked up about other people’s problems.

How do I let myself feel, or how do I reassure myself that it really IS okay to be happy, to feel joy, contentment?  I’m still working on that.  What my head always tell me is the inevitable — that it won’t last, it never has before, and its not going to start now.  My head goes on to remind me that Fall is upon us, meaning Winter soon, and that always spells horrors for my stability.

Does it have to, though?  Is it possible that I could make it through Fall and Winter relatively unscathed?  That I could keep up with my daily tasks and my hygiene and meds and relationship-building and therapy and all of the other daily skills, and maybe slide just fine through to Spring?

Well sure, I suppose it’s possible.  I just have to avoid all of these tiny self-sabotaging behaviors that I engage in, and focus on the more positive, skill building behaviors that I have been concentrating on lately.

Gee, Rosa, is that all you ask from yourself?  You are such a loser.

You see, that voice is there, so loud and strong, criticizing my every move.  It will take massive determination on my part to ignore it, to turn the mind, to practice opposite to emotion.  But I think I can.  I’m pretty sure I can, anyway.  Or at least I’m going to try.

What self-sabotage pitfalls do you find yourself getting tripped up by?  How do you keep yourself on a more positive path?  Do share your secret cures for all that ails…

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Refraining From Taking the Weight of the World Onto My Shoulders

It has taken me most of my life to realize that the problems of others, the problems of the world, the problems of problems of problems past, are not necessarily mine to carry every day on stooped shoulders.  Part of getting healthier with Dialectical Behavior Therapy (DBT), is setting boundaries.

Ok, it’s not just part of it, it is CENTERED around making healthy boundaries with the people you come into contact every day, with people you don’t even know, with the world.  I have realized over the last year of DBT that, in some of my personal relationships, I would personally take on the weight that is on others’ shoulders and make it my own.

Not only is this completely unnecessary, it is damaging to the relationship and to the other person, as well as (hello!!) damaging to the self.  If I have a friend who is struggling, it does neither of us any good if I spend mass amounts of time worrying about how to “fix” that person’s problem.  Chances are, that person doesn’t even WANT me to “fix” the problem, she just needs an ear.

Very rarely in life should we take on others’ problems as our own and go about “fixing.”  For one thing, my “fix” to your problem, maybe be a “fix” that you can’t tolerate or can’t sustain in the long run.  What I have learned is that, while it is fine to give advice from time to time (depending on the subject matter and how close you are to said person, to name a few restrictions), what is much more important is building that other person up, regardless of what exactly they are going through, and letting that person know that you support them and that you believe that things CAN get better, and perhaps most importantly, that things are not necessarily their fault or that they are not a “bad person” because things are going a certain way.

People need validation, reassurance, a kind word, a loving touch — not for you to solve their personal crises, or even necessarily to make suggestions as to how THEY might going about solving their personal crises.  It is very important to practice nonjudgmental stance with peers, family, romantic mates, nearly everyone.  You might be thinking in your head, “how did this idjit get into this pickle?” but of course, you saying that out loud is going to help no one.

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And if you think that over and over in your head, and judge a person’s actions or inactions about a particular matter, all sorts of gross and inappropriate judgements may sow themselves into your brain, and that will make supporting this person all the more difficult.  It is only very recently that I had an instance where I thought I was “helping” someone with their problem, and it turned out that they very much resented my advice and insight into the subject.

I thought by giving advice as to what  would do in a situation would somehow fit their somewhat similar situation, but people are different, inside, and out, and MY solutions would not in any way work for the other person as solutions..  People are simply too different.  This is when I realized that, what I needed to do, rather than give direct advice about a situation, was to keep my opinions to myself and be there for the person only in a validating matter.  Validate the other person’s feelings and fears, help them to feel not alone (but not by bringing up my own somewhat similar issue), and most important, to stop judging how the other person was handling the situation and to turn the mind toward loving kindness and away from judgment.

In the end, my cessation of giving this person concrete advice and stopping voicing judgement likely saved the relationship.  Things will not always be so clear, circumstances will not always be so dire, repercussions not always so large.  I am not in any way saying to never, ever give advice to another person about something (granted, as long as you know your correct facts) they are going through, but what I am saying is that most people, myself included, benefit more from having another person to validate, listen, provide a shoulder than from being directed on what it is exactly they should do next to handle the situation.  Building people up instead of tearing them down takes conscious thought and hard work, but is very worth it, for all parties, in the end.

Chronic illness and the right way to respond: