Tag / ptsd

by krubesch

Hearts Keep Drumming

Hearts Keep Drumming

Oh life
Is just a game
No one ever tells you how to play
See different people
Go different ways
Some of them will leave you but
Some of them will stay
Well our hearts keep drumming
And the years keep coming
Quicker than they’ve ever been
You’re sick of the same thing
But it’s quicker than changing
It’s too late to begin
Well everybody’s running
But you don’t know where
Time is running thin
Everybody’s looking for somebody to love
But we’re scared to let them in
And I say oh oh oh
Are there any survivors?
Am I here alone?
I say oh oh oh
Are there any survivors?
Am I here alone?
Am I on my own?
Am I on my own?
Oh love
It comes and goes
But no one never tells you how to learn to let go
Different people, they walk different roads
Some of them will hurt you but
Some of them won’t
Well the bridge is burning
And the wheel keeps turning
Quicker than it did before
Your heart screams “yes”
Your head says “no”
And you’re never really sure
Well everybody’s running
But you don’t know why
Time is running short
Everybody’s looking for a place to hide
So there’s no one left at all
Survivors
By Passenger

It’s been almost a year since I have posted on my blog. It’s not that I have not written, I just did not feel like sharing what I wrote, as it has been a difficult year and I have felt guarded. Everything I wrote just seemed so dark and depressing. I judge myself a lot harsher than I would anyone else and feel like what I have written is utter crap. This past year has felt like being on the biggest and craziest roller coaster at six flags. Not only have I had some of my lowest moments, I have also had some really good experiences, in which I have pushed myself out of my comfort zone. These experiences seem to have changed me in substantial ways and pushed me to grow in ways I don’t think I otherwise would have.

In February after years of hearing about it, I took part in Ladies Rock Camp. Thanks to my friend, Emily (!) and all my awesome friends who donated towards my tuition. This is basically a 3 day music camp for adults that includes music lessons, we are split into bands, and then tasked to write an original song and then perform it at a venue. I was so excited and nervous before participating and had a lot of self doubt about taking part in this. I am so glad I did it! I played the drums (my first choice of the 3 instruments I put on my paperwork) at Ladies Rock Camp and this was the first time I had seriously played since I was 17 years old. I had a bad experience with a band director in high school and was picked on for being one of the only girls (and good) who played the drums in middle school and thought that I would never play again. This experience was amazing and really boosted my self confidence. I feel like I was able to reconnect with this part of my 17 year old self and it felt really healing. It was nice to prove to myself that I could do something that felt really scary and out of my comfort zone and actually excel at it. I didn’t even get mad at myself when I goofed up during our performance (big deal for me!). This is something I try to hold on to when I am having difficult moments and I am slowly starting to add the drums back into my life as a fun activity. This was definitely one of the heights of the rollercoaster of the past year.

Part of the reason why I am writing about all of this now because not only do I need to sort out the thoughts in my head, but I think I need to reach out for help from my friends and family. Writing seems to be the only way in which I am able to articulate my thoughts and needs in an effective way.

I was diagnosed with stage 4 endometriosis after having surgery on 08/01/2018. The doctor who diagnosed me was the 7th doctor I had seen for the chronic pain I had been experiencing at that point for two years. Although that surgery relieved a lot of my pain, I started having chronic back pain again in October of 2018. Since then my pain has increased and is now affecting different parts of my body. Currently, and in the past 6 months, my pain levels radiate between 6 out of 10 to as bad as 10 out of 10 on the pain scale. My wife tells me I am not an effusive or demonstrative person (What?! who is surprised by that other than me?!) and that she has not been aware that I have been in that much pain since I don’t go into detail when I tell her I am hurting. To me, saying that, “I am hurting” means that I am in a lot of pain because I don’t usually complain. I think that I am conveying to people how I feel when apparently I am not getting my point across. That has been a big source of frustration in general for me, as I think I am communicating to people when I am actually not. I need to keep this in mind and try to be more descriptive with my words.

After almost 8 months of physical therapy ($$$ because hardly any pelvic floor therapists in Georgia are in network with insurance), an MRI, a back x-ray, appointments with my primary care physician, my surgeon and a rheumatologist, I still did not really have any answers about why I was continuing to have chronic back, hip, glute, thigh and heel pain. In early April, I became a little desperate about my increased pain and decided to get a 2nd or 8th (depending on how you look at it) opinion from a doctor in Chattanooga who was in network with my insurance and really seemed to know his stuff. When I called the earliest appointment he had available was 08/06/2019, so I went ahead and scheduled it.

On my birthday, 4/30/2019, the surgeon who originally diagnosed me, called me to let me know I had some concerning cysts and “fluffy” tissue that her radiologist noticed on the MRI I had in February (after Emory told me it was normal- the 2nd MRI they have misread). She let me know that she would need to do multiple procedures along with a biopsy as soon as possible to determine if that was causing my recurrence of pain and to rule “other things out.” Of course I immediately went into panic mode and consulted Dr. Google! Bad idea… My immediate concern became that I might have cancer. I continued to pretty much obsess about this until we finally got the results of my biopsy. Almost two months after that phone call and the procedures, I found out that I did not have cancer and that the “fluffy” tissue was likely due to the excess estrogen that is caused by endometriosis.  Not a definitive answer as to if this is causing my pain. My doctor seemed pretty unconcerned with my pain levels, especially since my test results all came back “normal.” I decided to keep that appointment with the other doctor in Chattanooga in hopes that he might have some insight.

I am really glad I kept the appointment with the surgeon in Chattanooga. He listened and asked questions in a way no other doctors had up until that point. He knew from looking at my previous surgery pictures that I still had endometriosis on my intestines and most likely in other areas in my abdominal area. He told Leah and I that I would need another surgery and explained that I would need to have my appendix removed because it can be a pelvic pain generator and excise any endometriosis that he finds when he goes in. He also highly recommended that I get a hysterectomy and he will leave it up to me as to whether I keep my ovaries or not. He did extensive blood work at that appointment, ordered a lumbar MRI (in hopes to see if he could tell what was causing my back pain, although he is pretty sure it is endometriosis). I left that appointment in tears- partly because the drive to Chattanooga felt amazing compared to Orlando (my other surgeon’s office is there) and really because, once again I know my body best and I am not crazy. He validated the fact that I knew and still know that there is something wrong with my body and my surgery was scheduled by the time I left his office. His office is so much more efficient than my previous surgeon. He answered all of my and Leah’s questions in detail and spent over an hour with us at my appointment.

I thought that waiting 4 months for my appointment with him would probably be the most difficult thing out of this process, well I was wrong. Our insurance changed in July of 2019 and I have been trying to get the MRI that my doctor ordered approved by our insurance company for two months at this point. My doctor’s office and I have spent hours on the phone with them, he did a peer to peer review (where your doctor tries to convince one of the insurance company’s doctors that you need whatever procedure they’re denying), and I wrote an appeal letter- including my eight months of physical therapy notes, my x-ray results, and a note from my therapist (basically saying that chronic pain and constant self-advocacy and battles with insurance is affecting my mental health). I am still in limbo as of today as to whether they will cover my MRI and my surgery date is 20 days away. I thought that having three months in between my appointment and my surgery date would give me plenty of time to get everything in order. As of today, I still don’t know if they are going to approve my surgery that is scheduled out of state in less than 3 weeks.

Everything came to a head last night and I had an epic meltdown. I started crying while I was cooking because we were out of avocado and that was supposed to go into the meal that I was cooking. I am on a crazy anti inflammatory/endometriosis/ interstitial cystitis diet to try to manage my pain and inflammations and it was the avocado that tipped me over the edge! All the feelings that I have been keeping at bay by remaining constantly busy, productive, researching and planning, all came rushing to the surface and finally I let myself stay with my feelings and allow them to move through me. I am so so tired. Being in constant pain and remaining a productive member of my household, job, and society in general is so draining. I am very careful as to how much we have scheduled outside of work because even a fun and easy dinner with friends is exhausting. I know that I have been isolating myself for this reason and also having a chronic illness that involves my lady parts is not necessarily the easiest thing to talk about, nor the most acceptable in our society. I am aware that I am not reaching out to people when I need to and I am going to work on this.

It’s very hard to try to process losing my uterus when I don’t even know if or when it is actually going to happen. It feels hopeless to have to fight with my insurance company when I am in so much pain and the dark thoughts I try to keep at bay come bubbling up to the surface. These suicidal thoughts make me feel riddled with shame along with the shame that comes with having endometriosis in the first place. Not to mention having to prove to doctors and insurance companies that there is something wrong with my body. This is something that needs to be discussed. 1 in 10 women have endometriosis and so many women have hysterectomies and don’t talk about it. I would love any input from those who have had one, as to what to expect, tips and anything else I might need to know.

I am scared about my surgery. I am scared that the surgery won’t help and that I will feel this way the rest of my life. I am scared of not knowing how long I will be out of work (it will depend on exactly what is done in surgery and we won’t know until it happens). I am terrified that we will have to go into debt or that I will have to delay this surgery even longer. I am scared that permanent damage is being done to my body while I am in this limbo. I worry about Leah having to take on most of the household responsibilities while I am recovering, and the toll her worry over me takes on her. I worry that I made the wrong decision in not having kids now that it is almost too late. I worry about possible complications from my upcoming surgery. I am so anxious about our insurance and whether we will have surprise bills IF they even approve my surgery.

 

Did you know?

  • Endometriosis is one of the top three causes of female infertility
  • An estimated 8.5-10 million women in the US and 200 million (that’s 200,000,000) worldwide are believed to be affected
  • Extremely painful menstruation, endometriosis’ most commonly known symptom, is the leading cause of missed work and school in young girls and women, according to one NIH study
  • Endometriosis commonly goes undiagnosed or misdiagnosed, with women experiencing about 6-10 years delay before being correctly diagnosed
  • Endometriosis is also frequently undiagnosed in teenage girls, due to persistent medical myths, like the false belief that pain with periods is normal or that teenagers rarely get endometriosis
    Taken from http://nezhat.org/endometriosis-treatment/endometriosis/
by krubesch

Real Talk

“Write hard and clear about what hurts.”
Ernest Hemingway

Due to the recent celebrity suicides, I have been thinking a lot about what my depression looks like on the outside and how people I am close to would know when I am struggling to keep my footing in this world. I know I have written about my depression and suicidal thoughts before (as this blog is mostly written about these subjects), but each time I put my most vulnerable thoughts on paper and create a permanent record letting everyone know my struggles- it feels like coming out all over again. Let’s be honest, it’s pretty taboo to admit that your brain is fucked up and that is one of the reasons why it’s important to talk about it. A few years ago I had to take a FMLA leave from a job that was very stressful and I was struggling with increased PTSD symptoms along with high blood pressure. I remember being completely distraught when my FMLA paperwork was sent to the wrong fax and a coworker looked through my paperwork and started rumors that I was having a nervous breakdown. I was so ashamed that I had to take a break from work and that my PTSD was a part of the reason why I had to. It felt taboo to show any weakness, especially since I was in management and I was terrified of what people thought of me.

People resort to suicide, or at least I struggle with suicidal thoughts when I am overwhelmed with my feelings and emotions along with the shame and stigma of having these thoughts in the first place. The silence of keeping these thoughts to myself is often deafening and although all of this is embarrassing to admit, we need to talk about it or we will keep losing people we care about. I cannot speak for Anthony Bourdain or Kate Spade, but I can speak for myself.

Today was one of the hardest days I have had in awhile. I had a particularly difficult and draining therapy session last night and being in constant physical pain is starting to wear on me. I feel like I have been hit by a bus, which is how I usually feel the day after I’ve done a lot of work in therapy. I pressed the snooze button for over an hour and fell asleep in the shower. I contemplated staying home from work, but knew that might make things worse. On my drive into work I thought about what my outward signs of depression look like and I came up with this list:

  • I completely stop wearing makeup because I usually end up crying on the days I actually wear mascara and I look like a racoon (it’s harder to hide that I’ve been crying). I also sleep too late in order to have time to put it on.
  • I stop exercising and want to spend most of my time watching tv or laying in bed.
  • I push people away and cancel plans- even though I desperately want to connect.
  • I become forgetful and have a hard time paying attention.
  • My posture is different- it feels like I am moving through my day with a heavy, wet blanket on my shoulders. Every daily task feels difficult.
  • I am way more quiet than normal (crazy, I know!).
  • I have sleepless nights or I sleep for over 10 hours at a time.
  • I avoid eye contact and shut down
  • I use humor in order to avoid serious conversations or in a self deprecating way before anyone else can criticize me

Words I have heard to describe people who have committed or attempted suicide are lazy and selfish. I personally know that this is not true. Suicide may look selfish to the people who are left behind or those who don’t struggle with this particular demon, but as someone who has contemplated suicide, I have convinced myself that it is the least selfish thing I could do. Depression tells me that I am a burden and that people are tired of dealing with me. It convinces me that everyone would be better off without me and that I would really be doing the world a favor. As someone who has worked really hard and spent thousands and thousands of dollars in order to try to combat (or at least alleviate it, since it appears to not be going anywhere) my depression, I would argue that I am the opposite of lazy, even though American society and I tell myself that I am. Sometimes that is the worst part, working so hard to feel better and it never (my wise mind knows that it is occasionally and not always) feeling like it is enough or that I am trying hard enough. Sometimes I get really mad and feel like it is selfish of people to make me promise that I won’t hurt myself, when I know that they just care. I feel like they don’t understand, but I know deep down that this is not necessarily true. I get mad at them because if they cared so much, then why don’t they do more to make me feel better? Don’t they know that if I am contemplating suicide, it feels unbearable to be inside my body and in my mind? But I know, that it’s really not up to them to make me feel better, it’s all on me.

What do you do when a friend is struggling? It helps me when people check in with me, even though I might have stopped reaching out to them. Talking to or just sitting with someone who I know will just hold space for me helps. I clam up if people tell me how I have it better than others (of course I know that, it does not negate that I still feel this way) or if they freak out about hearing that I have had suicidal thoughts. Please do not tell me to do self-affirmations. Please do not tell me that this too shall pass, because in the moment it feels like it won’t. Something as simple as a text can help me when I am in a funk. Asking me to reach out when I am struggling is complicated. That is the last thing I want to do when I am down in it. I recognize that it is my responsibility to get help when I need it, but I tend to only reach out for help when things are pretty bad.

I can say that the severity of my suicidal thoughts has diminished over the past year and that it does appear my hard work and money spent is helping in that regard. I am too practical to hope that one day I won’t have these thoughts or urges, as they have been a part of my life for a very long time. If you also struggle with suicidal ideation, I can say that is gets better (or maybe more manageable) even as cliché as that sounds.

 

For crisis text line- Text CONNECT to 741741 in the United States.

 National Suicide Prevention Lifeline: tel:1-800-273-8255

 

by krubesch

Honey and Pain

“The days aren’t discarded or collected, they are bees
that burned with sweetness or maddened
the sting: the struggle continues,
the journeys go and come between honey and pain.
No, the net of years doesn’t unweave: there is no net.
They don’t fall drop by drop from a river: there is no river.
Sleep doesn’t divide life into halves,
or action, or silence, or honor:
life is like a stone, a single motion,
a lonesome bonfire reflected on the leaves,
an arrow, only one, slow or swift, a metal
that climbs or descends burning in your bones.”
― Pablo Neruda, Still Another Day

 

I have an impeccable memory when it comes to people, dates, events, and I usually remember these things with how they relate to time. Sometimes this is a blessing and very useful and other times it’s a curse. I am often telling Leah what we were doing a year ago or that 3 years ago today xyz happened. It’s probably normal to start reflecting on the past year during the month of December and I’ve been thinking a lot about all that has happened. It’s hard to believe that a year ago during this time I was making the decision to spend Christmas and New Years in the hospital (and ended up staying there for 3 weeks). It feels like longer than that and also like it was just a few months ago at the same time.

I keep having these eerie dejavu feelings about how this week last year I was completely anxious about going to the hospital and was not sleeping very well at all. In order to quell my anxiety of the unknown, I was obsessed about what I would take with me and finding shoes without laces and clothes that did not require a belt or have any strings. Memories pop up now from my stay when I put on some of the clothes I bought specifically to wear at the hospital and I find myself transported back to that time. Sometimes I wish that I was going back when the tasks of everyday life feel so overwhelming. It was so nice not to worry about anything other than working through my shit. I didn’t have to think about what I was going to cook for dinner or try to figure out how to get everything done (working out, cooking, laundry, grocery shopping, picking up the house, getting up for work when it felt impossible to get out of bed ect.) between work and appointments. It feels like I’ve been taking care of myself for such a long time that I long for being completely taken care of and letting my guard down.

I know now that depression is a liar, at least I know this to be true when I am having good days. On good days when that negative voice sneaks to my head I am able to brush it off and on exceptional days I am able to reason with it. On bad days depression is a fortune teller, the voice of reason, and the decider of all things. I can’t tell the difference between the critical voice in my head and depression, but maybe they are one in the same…or they egg each other on when they are both present. There are days when my critic tells me I am to blame when Leah and I are having marital issues, that I screw up every relationship given the chance, that I’m a failure and lazy. It tells me that things are not going to get better and that my good days never last. That no matter how hard I try it is never enough. There some days where everyday tasks seem to be insurmountable and that scares the shit out of me. I don’t want to go back to that place I was a year ago, I don’t want to have to make a difficult and life saving decision like checking myself back into the hospital. My wise mind tells me that just because I am having a rough patch, does not mean that I will be crushed by the bowling ball of depression. My emotional mind is telling me that it’s only a matter of time before I will need to go back to the hospital.

On bad days depression tells me that I am a burden and an inconvenience. That people don’t want to be around me, that I am a drain. I go from being very excited about making and having plans with my friends to wishing that I hadn’t made those plans. That I won’t know what to talk about or that I won’t have fun anyways. When I listen to depression and cancel, then I’m lonely and sad that I am by myself. I’ve recently had back pain and been unable to do a lot of things for myself. I knew that I was bad at asking for and receiving help, but I didn’t know the extent of it. I thought my difficulty with help had to do more with getting emotional support from others, but it extends to even asking for help with my job duties or tasks around the house that I have deemed as mine.

I still am having difficulty with my body image and managing impulsive behavior, although it is much better. Depression tells me to eat crap. That chocolate or baked goods will make me feel better. And it does, momentarily. It does until I catch my reflection in the mirror and see this fat person staring back at me. I tell myself that I don’t have any discipline, that I’m disgusting, and that I have to go on a diet. I can’t remember a time when I felt good about my weight (I started my first diet in second grade). When my pants are getting tighter around my waist as I try to button them I berate myself for making bad decisions, for not taking care of myself. I know in my wise mind that I would feel better if I ate healthier and went to the gym more often, but it’s a vicious cycle where I am so tired I can’t fathom adding one more thing to my day. I get mad at myself for succumbing to my exhaustion and then bully myself into eating healthy for a day or two until I give in again. And it starts all over.

Depression tells me to buy things. It tells me that a little treat will make me feel better, I get a rush from looking around stores and feel better about my appearance if i can make myself more presentable with something new. It does not have to be something big, I can be something as simple as a t-shirt, but that stuff adds up. I then get mad at myself for spending unnecessary money, especially on myself. I like picking up treats for Leah and have an easier time justifying spending money on her. There is something about spending money on myself that gives me a lot of guilt or maybe it’s shame.

Depression or is it my critic? (sometimes I can’t tell the difference) tells me that I am a failure and that I will never be financially (career wise) successful. It tells me that I buckle under pressure and that I am destined to stay in jobs where I don’t make a lot of money because they are low in stress and pressure. My mind recalls all of my memories in which I feel like I have failed when I am lying in bed trying to fall asleep. It ridicules me for having to drop chemistry and convinces me that I am not cut out for grad school. I feel like I have not pulled my financial weight in my marriage for years now. We used to trade on and off organically as to who is the breadwinner, but Leah has been left holding the bag for awhile. I look at how much money I have cost us since July in doctor’s appointments and the therapy that is out of network with our insurance and I feel guilty and like a drain. My body hurts all the time, but I cannot justify acupuncture visits and massages because we have more important items and appointments that we need to pay for.

I know that a lot has changed this year and that I will be ending 2017 in a better place than it began. It’s hard to remember how much has changed when I am am in the thick of a flashback, a body memory, or letting myself feel emotions that are foreign and difficult. I have to remind myself that a year ago it was rare for me to go through a day without some kind of suicidal thought and that I had come extremely close to giving in. I think about all that I put my wife through and how we are in a much better place today (thanks to a lot of hard work on both our parts). I know that I am better equipped to handle a rough day and that I have started reaching out and talking more when I need extra support. There is a part of me though that thinks that none of this is enough and is impatiently waiting to move past this, to be able to get off my meds completely, to be able to be present in my body without wanting to disappear, to not have depression ever present and looming in the background and to not feel like we are spending so much money on maintaining my mental health.

 

 

by krubesch

Cocktail

“In response to the trauma itself, and in coping with the dread that persisted long afterward, these patients had learned to shut down the brain areas that transmit the visceral feelings and emotions that accompany and define terror. Yet in everyday life, those same brain areas are responsible for registering the entire range of emotions and sensations that form the foundation of our self-awareness, our sense of who we are. What we witnessed here was a tragic adaptation: In an effort to shut off terrifying sensations, they also deadened their capacity to feel fully alive.”

Bessel van der Kolk, The Body Keeps The Score, p.94

I kind of feel like I have lost myself. Like all this work in therapy on dismantling negative beliefs and delving into the parts of me that feel like a dark abyss make me feel like I don’t know who I am.  I guess if I’ve dissociated or hidden parts of myself from myself for years maybe I never knew who I really was.  I was always just a shell of myself- what others dictated of me.

My time these days consists of working, spending time with my wife, and going to various medical professional appointments.  There was a 2 week (10 days M-F) period when I had 11 appointments while clocking 68 hours at work.  And yet all of these appointments were necessary.  Two of these appointments were at the Treatment Resistant Department at Emory (http://www.psychiatry.emory.edu/programs/trd.html).  Because medication and talk therapy are not significantly improving (or fast enough) my depression symptoms, my psychiatrist referred me to the TRD team.  These two appointments were two and three hours long involving a psychiatrist, a psychologist, and several computerized assessments.   After my appointments the team concluded that TMS (Transcranial magnetic stimulation) and possibly switching up my medication cocktail (yet again) were the best course of treatment for my particular situation.  Right now I am waiting on hearing back from Emory to see what my insurance benefits will cover for TMS.  If everything works out I will be going to an hour long appointment five days a week for six weeks having a coil deliver a magnet pulse on the surface of my head. (http://news.emory.edu/stories/2016/06/hspub_epstein_tms_for_depression/campus.html)

I am hoping I am able to do this and that it might deliver some results.  I am not putting all my eggs in this basket and will continue to go to therapy twice a week as I have been.

In January we added a stimulant to my medication cocktail.  This addition has been somewhat helpful, but I can’t figure out if the benefits outweigh the side effects.  The medication decisions lately seem to revolve around whether I can tolerate certain side effects and nixing other medications which have side effects I have deemed deal breakers.  Right now deal breakers for me are weight gain and lethargy (I don’t need any more help feeling tired!). Vyvanse, the stimulant I am taking, has definitely helped me to cope better with everyday life. It’s less effort to get out of bed, I’ve been actually cooking dinner, and I can manage a dog walk 1-3 times a week. I have even been to the gym once to lift weights!  This is a huge difference from the previous 4-5 months.  Headaches, an even drier mouth, more shakiness, jitteriness, and a brain fog in the afternoon are what come with the benefits.   I can’t decide if the jitteriness is increased anxiety or just extra energy I am not used to having- maybe both.

Another fun thing that’s been becoming increasingly painful and ever present is pain in my lower abdomen/pelvic region.  I have been assessed by my pcp, my gyno and will be going to the urologist this coming Monday. So far all the diagnostic testing shows that I don’t have anything wrong with me.  The gyno thinks that if I am cleared by the urologist I might be having symptoms of endometriosis and she will put me on birth control (more pills yipee!).  I have noticed that the pain gets worse when I am more emotionally dysregulated which means it could have an emotional component.  After finishing The Body Keeps The Score, by Bessel van der Kolk I understand how trauma has contributed to my chronic pain issues.  I do want to get completely checked out first before we determine that this is mostly trauma related.  The TRD clinic did comprehensive bloodwork and urinalysis tests when I was there.  The tests  concluded that I have an abnormally high blood sedimentation rate and a high C-reactive Protein level.  These tests basically just mean that I am having body inflammation.  It does not determine, why, where, or how.

Along with the pelvic pain comes increasingly more vivid and painful flashbacks. They seem to trigger each other. That’s also fabulous. Van der Kolk states, “Trauma victims cannot recover until they become familiar with and befriend the sensations in their bodies….Noticing sensations for the first time can be quite distressing, and it may precipitate flashbacks in which people curl up or assume defensive postures. These are somatic reenactments of the undigested trauma and most likely represent the postures they assumed when the trauma occurred” (p.102, 103).  I was totally weirded out in therapy last week when I curled up like a child and hid my face from my therapist. This action was involuntary and I just found myself just going along with what my body wanted me to do.

I have had friends ask me if I think all of this is necessary and if drudging up the past is just making things worse.  I have wondered the same thing, but both my therapist and van der Kolk (among many other professionals) have said that “In order to regain control over yourself, you need to revisit the trauma: Sooner or later you need to confront what has happened to you…” (van der Kolk, p.206).  It’s like the saying, “the only way out is through.”  Going through this recovery/process is probably the hardest thing I have ever done, but I know that not dealing with the trauma for more than three decades has brought me harm and strife.

The Body Keeps the Score is probably the most life changing book I have read to date.  It’s crazy how I can relate and see myself in almost every chapter of van der Kolk’s book.  It has really helped me to understand why I cannot readily identify emotions or know what I am experiencing/ feeling- there is a name for that, it’s called Alexithymia!  I need facts and information in order to make sense of myself and seeing it in written form really brings it home.

If everything falls into place, I plan to write and keep a daily journal about the TMS treatment. The psychiatrist at the TRD clinic also recommended that I use the hour during TMS to do some sort of meditation or relaxation techniques to make double use of that time.

by krubesch

                  Isolation

 

“In order to change, people need to become aware of their sensations and the way that their bodies interact with the world around them. Physical self-awareness is the first step in releasing the tyranny of the past.”

Bessel A. Van Der Kolk, The Body Keeps the Score

I’ve been reading several books (thanks to Amazon) and scouring the internet for more information about what’s happening or happened with my brain and my body.  I’ve convinced myself that if I am able to logically understand the horrible body sensations that are happening, then maybe they will have less power over me.  That they won’t feel so all consuming and terrifying. This is what I do, I research and research in an effort to calm my anxiety, to keep my worries at bay. To make sense of the muck.

I have been having these flashbacks where my body feels like it’s re -experiencing some of my trauma and this is a new thing that started I think (these days my memory is for shit) in October.  After I got home from the hospital these flashbacks have been stronger and more disturbing. They happen at all hours of the day and they are very unpredictable. They happen at home, in the car, at work, and more intensely in therapy. Today I realized that shame might be a trigger (up until now it has felt like they happen on a whim).  I had a bad experience at a doctor’s office today and as I was driving back to work I could feel the sensations starting.  Surprisingly, at that moment, I asked myself what emotion I was feeling and I was able to tell that I was feeling really ashamed. I then thought about what I was feeling when it happened in therapy the day before and I was also feeling shame and anger.

These feelings and flashbacks have caused me to retreat back into myself and to have an increase in suicidal thoughts (that are shaming on their own). I feel constantly on edge, tired, and anxious.   Leah has noticed that when she is busy I have been isolating myself at home and not reaching out to friends when I have free time.  I feel so tired all the time that I just want to rest when I can, but I’m having trouble balancing alone time with feeling isolated and lonely.  I think I’ve almost forgotten how to have friendships.  I feel completely out of practice.

The other day I was having some dark thoughts and started scrolling through my phone and every person that I started to reach out to- I had a rebuttal about why I should not bother them and that I was honestly embarrassed and I didn’t know what to say. How do I reach out when I don’t have anything to say?  I’ve done such a good job at isolating myself that I’m not sure how tell someone I haven’t had an honest conversation with (in a while) that I am struggling and need someone to talk me down.  I don’t even know what I need to hear.  I don’t know what’s going to make me feel better when it feels like my body is torturing me.  I don’t even know how to properly explain what’s going on without getting super humiliated or how to make the words come out of my mouth. So I text and the emotion gets lost in translation. It’s always easier to write.   My therapist told me the other week that writing is going to save my life.  I’m not sure if I believe her, but I hope she’s right.

The shame around certain topics seems to envelope me whole like quicksand.  I don’t realize I need help until ¾ of my body is covered up.  When I reach out, I’m not able to even let the person on the other end know how serious my text exchange is. That the fact that I am texting at all is something.   They have no idea that I’m struggling unless I spell it out, which of course is extremely difficult because of the shame monster.  Sometimes I feel like I only reach out anymore when I am at my wits end.  I’ve forgotten what it’s like to have a regular conversation when the backdrop of my depression is not ever-present.  I’m really not that good with small talk anyways, if you couldn’t tell.   There are a lot of areas in my life right now where I feel like I’ve lost my groove. My week to week seems to be a strict schedule of going to work, eating, sleeping and going to therapy.  That right there feels like a lot to handle.  It’s a good week if I’ve been able to walk Penny one time.

Reading all this information is helping, but it also makes me feel like I’m drowning in knowledge without a life raft.  How do I put what I’m learning into action or at least cut myself a break?  There’s a disconnect between understanding that there are reasons why I act the way I do and having compassion for myself.  For instance in The Body Keeps The score, Van Der Kolk states, “Even years later traumatized people often have enormous difficulty telling other people what has happened to them. Their bodies reexperience terror, rage, and helplessness, as well as the impulse to fight or flee, but these feelings are almost impossible to articulate.  Trauma by nature drives us to the edge of comprehension, cutting us off from language based on common experience or an imaginable past” (p.43).  So I know that it’s normal I have trouble articulating myself and speaking with others about what is going on, yet I still get angry and berate myself when I am not able to do so.  I can’t find the compassion to let it be and to meet myself where I am.

by krubesch

Re-entry Part Two

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I’ve started feeling melancholy on Thursday, the first time since I’ve been home.  I have to stop myself from thinking that the “honeymoon” is over and re-frame it as this is a feeling that will come and go.  The only thing is that in my experience it’s the good feelings that fluctuate and the hard ones stick around a lot longer.  I knew that while I was in the hospital I was in a safe bubble, but I think that I expected that once I got home things would be easier than they feel at the moment.  They are a little bit easier (things, life in general), but I’m still really anxious, jumpy, and some of those feelings I don’t like are returning.

 

Today is the one year anniversary of Patrick’s death and the weather is gloomy outside and I feel gloomy inside myself.  As usual with death, my heart does not hurt quite as much as it did when he died, but I do miss him so much.  I think he was one of the safest people I have met: I could trust him without great repercussions.  If he hurt my feelings I could blame it on the Lewy Body Dementia instead of myself, I could tell that he was kind right from the beginning, and I knew that he would not reject me in the way I fear that others might.  Because of this I think I trusted him in a way I have never trusted anyone else.  We were content to spend time together in silence and it did not feel awkward, at least not for me.  I did not anxiously feel like I had to say something, anything to fill the silence, which I often feel in the company of others.  

 

Sometimes I found myself speaking with him in ways I was not able to speak to my therapist- we had this ease with each other.  I always looked forward to going to work and often had things I wanted to tell him or food I wanted him to try.  He always asked about the score of my soccer games from the night before and seemed proud when we won.  I know that Leah and Susan sometimes worry that taking care of him and seeing it through until his death made my depression worse, but I feel like my relationship with him helped facilitate more meaningful relationships with others.  As I was in a really bad place before I started working with Susan and being around them was the right medicine at that time.

 

Reintegrating back into my life at home has been a little hard and exhausting.  I forgot how much the daily things like making dinner, packing a lunch, making sure bills are paid, and taking care of our animals and basic things around the house seem to wear me down.  My mind is also less clear from the medications I’m on, so it feels more draining to think logistically and make sure I’m not forgetting anything.  Leah and I are working together on this by trying to build rest time into our daily or weekly schedule.  I’m finding that I really need that time.  Although sometimes slowing down makes me more aware of my feelings, which is arduous as well.

 

I’m pretty much giving up on the idea of going back to school for the near to distant future. I just don’t think it’s the best or smartest decision, which makes me want to criticize myself.  I know that by 2020 all the courses that I have taken in undergrad will no longer be valid as prerequisites because of the 15 year rule. That makes me want to just give up altogether.  Maybe i just have to realize that not everyone is cut out for higher ed and accept that.  I don’t know how women with families and jobs go back to school with all of that going on. They definitely have my respect.

 

My therapist told me on Friday that I need to stop worrying and trying to predict the future. That thinking is causing me a lot of strife right now.  It’s really hard to stop doing that when you’ve been doing it your entire life.  I am working on staying in the here and now even if that’s painful or difficult because I know that my old ways of coping saved my life at one point, but are not longer working or useful.  I am also hoping that writing this down makes me want to do it more than I really do!  

by krubesch

Re-entry

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As many of you know, I am back after three weeks at a residential facility that specializes in PTSD and DID and I am really grateful I had the resources and time off work to go.  (For more information: https://www.sidran.org/resources/for-survivors-and-loved-ones/what-is-a-dissociative-disorder/ http://www.sidran.org/resources/for-survivors-and-loved-ones/what-is-post-traumatic-stress-disorder-ptsd/ )  In a way I feel that this experience was indeed life changing, but not in the way I had initially anticipated.  During the admission process (which took 3-4 hours) I remember specifically explaining to the intake coordinator what I felt my biggest issues were and why I had flown from Atlanta to Washington DC to spend my Christmas and New Year’s in that particular hospital.  Those issues centered on flashbacks and body memories surrounding the rape I experienced as a child.  As my time there passed, we mostly focused on family and interpersonal dynamics instead.  As usual, I was a little off base and frustrated as to why we were focusing on other issues that I deemed not as important.  My social worker and individual therapist explained to me that we were working backwards in a way and that everything is connected.  This was surprising to me because I tend to compartmentalize and stuff everything into its own box within myself as though they are not connected.  I became less frustrated and went along with what the professionals were telling me and I am glad I did.  

I can tell you that there is never a dull moment when you are on a locked unit inside a psychiatric facility.  I thought about opening this post with “A born-again Christian, a non-binary queer, a lesbian, and a conservative Jew walk into a psych ward…” It took a minute for me to adjust to being around the other patients, but it was also liberating in a way.  It reminded me of the first time I stepped into a lesbian bar, that we all understood each other in a way other people can’t.  I recognized the community as “my people” even though we didn’t know a lot about each other’s specific trauma or most details about them personally.  We did get to know each other in an intimate way that even my best friends don’t know me.   We cared for each other by letting one another know when we were walking behind or nearby and we were sensitive to triggers of our peers and would often warn one another when we noticed possible triggers in the environment.  Because we were in a super raw and vulnerable place, being triggered was a heightened risk.  For example, I accidentally triggered someone by wearing a t-shirt with the Old Spice logo- the signature cologne of their abuser.  I am highly triggered by religion and learned to speak up in group therapy when the conversation got too centered on prayer.  It was actually really nice to have warnings when we were all processing heavy shit that made us more susceptible to said triggers.  We were able to go from heavy group therapy sessions to being able to joke and add comedic relief to the situation.  We often referred to our situation as “Trauma Camp.”  What happens at trauma camp stays at trauma camp.

When I say that this experience was life changing I am referring to several things.  Three months ago I would have told you that I would consider death before admitting myself into an inpatient facility. I think this was due to the intense shame that I could not hold myself together anymore.  That I was failing at life and relationships. I was concerned about what other people  would think if they knew I had to go to a psychiatric hospital.  I think that shame along with all the other shame I keep hidden inside bubbled over and I realized I was about to hit rock bottom. Now I don’t feel as ashamed that I got the help I needed and I don’t want to associate with anyone who judges me anyway.  

My communication skills have drastically improved which Leah has happily noticed.  I am able to let myself feel and identify a wider range of feelings and emotions, which was not the case prior to my hospitalization.  I actually joked with my social worker that they orchestrated certain events in order for me to get in touch with my anger and man did I get in touch with some rage.  After feeling that rage I noticed that nothing catastrophic happened and that the feeling had passed once I let myself experience it.

I think this experience has greatly improved my relationship with my wife.  We have been in a rough place for a while before I left and now it feels like we have turned a corner. I know that we will still have rough patches, but the way I react to those instances will be different.  Leah seems to also view my symptoms of PTSD and dissociation differently- like we are both able to make sense of why I react in certain ways.  It has also made me realize how many friends I do have and I appreciate every card and package I received while I was in DC (thank you notes to come!).  Those cards helped make the holidays as special as they can when I am in a foreign place without my wife.  

I am somewhat of a people pleaser (ok, I know somewhat is a stretch) and doing this for myself has opened some doors, or at least chipped away some of the wall towards self acceptance and compassion (ugh I hate that word!) that otherwise was non-existent.  I still have a lot of work to do on many fronts, but I was able to lay down part of a foundation. I am very thankful that in a mere three weeks I was able to accomplish these things.

Ok, so right before I got discharged the psychiatrist kept talking about reentry into my life and how I needed to be easy with myself and take things slow.  I thought this was some bullshit, but as soon as I got into the airport from my Uber, I realized that he might have been right. I’ve noticed that I have been getting tired very easily and have to factor rest time into my day.  Loud noises and lots of people make me jumpy tired, and a little uncomfortable.  Facebook and the news are still completely overwhelming to me and I will still try to stay away from both.  Running errands drains me, where it used to invigorate me. Leah has been great about cooking me dinner while I close my eyes and rest on the couch.  I guess it’s all a learning curve and it’s forcing me to pay attention to my needs and act on them. What a concept!  
In closing, I’d like to say that I struggled with posting about this, but was encouraged by a dear friend who said I should write about what it was like “on the inside”.  I guess ultimately I wanted to share all this because although it was scary and hard at first, it was worth accepting that I needed this kind of help and reaching out for it.  If you need help, you should try to get some and not feel so scared or bad about it.  We can’t be helped if we don’t ask for help.  We can’t heal if we don’t take the necessary steps to do so.

by krubesch

Out of Control

I’m getting fat and I feel completely out of control.  Things are still heavy in therapy, which is bleeding into every facet of my life at the moment.  It was extremely difficult to get out of bed this morning and I can’t figure out if this is the new normal for me or if there was a specific reason that I pressed snooze for two hours today.   Maybe it’s the weather change, the up in my medication, having therapy last night, missing Patrick, or the current antics of the republican nominee for president.  I don’t think I’ve realized until today how the election has had an impact on me.  There are news articles everyday about the minimization of sexual assault by various men, especially judges and Donald Trump and I guess I have a lot of feelings about it.

As a woman, I know that sexual assault is viewed differently than any other crime.  If Donald trump had been stealing jewelry or money instead of kisses, gropes, or God knows what else we would not even be having any of these discussions because he would be sentenced and that would be that.  To me it is plain and simple he took something that did not belong to him and that is wrong.  But then we want to know what she was wearing, if she was drinking, if she was even pretty enough, or what behavior she demonstrated that made him think that it was ok.  If you were at someone’s house and they stole your wallet- none of these questions would be asked.

Then you have the Brock Turners of our society where we excuse their behavior because they somehow can contribute to society in a way we deem worthy of looking the other way.  What is not considered is that the woman who was violated by Brock Turner has to find a way to get out of bed every morning and that her life has been forever changed.  Who gives a shit about what she can contribute!  This event will just be one day out of Brock’s life and will be something she will have to “overcome” and something she will be responsible for taking care of even though she did not have a choice.  She may spend thousands and thousands of dollars on mental health professionals in an effort to just to be able to make through each day or she may just decide it’s not worth it and end her life.  Obviously I am not specifically speaking about Turner and his victim.  This happens everyday in the US, we just know about this case because he was caught and the judge gave him such a light sentence.

Then there is the guy who was convicted of raping his 12 year old daughter repeatedly in Montana and gets 60 days in jail. This is our judicial system at it’s finest, folks.  This is what happens IF there is enough evidence to convict and if the victim even comes forward.  No wonder many survivors do not make police reports or even try that route. They end up feeling worse in most cases and he gets a slap on the wrist, literally.   Man, I am so angry right now I am shaking.

Everyday I have an experience where I get a creepy feeling or a loud noise freaks me out and my brain immediately thinks that this would be the perfect moment for someone to attack me or that maybe there is someone behind me.  I know that statistically I am more likely to be attacked because I have been sexually assaulted.  What’s funny is that I knew the guy who assaulted me and I still worry more about the guy who I don’t know that may be lurking around.  I constantly try to be aware of my surroundings when I am alone and do whatever I can to protect myself.  The house is always locked when I am home, my car doors get locked before I put on my seatbelt, I don’t walk alone at night if I can help it, and I made us get an alarm system for our house.  I tried to explain rape culture to a guy I went to high school with a couple of weeks ago on Facebook, but I don’t think he gets it at all- and why would he?  It’s not something you understand until you experience it.  Every woman I know does some of these things, even women who have never been raped or molested.  This is what I mean by rape culture.  If Donald Trump is elected (and I don’t think he will) he will be President of the United States- think about that.  The highest role model of role models for kids (and adults) in the US.  Little boys will be looking up to him and think his behavior is acceptable.  Little girls will think that his behavior is normal and will either have to tolerate the same behavior from other males or be constantly looking over their shoulders. Is this what we want for our children?

It’s hard for me to have hope lately because this is the reality.  I’m trying to hold out hope that someday (hopefully I will make it to that someday) I will have less days filled with anxiety and depression.  I will be able to look in the mirror and like the person staring back at me.  Suicidal thoughts will be a rarity instead of a frequency.  I won’t have to turn towards something (food, alcohol, perfectionism ect) to cope.  Hopefully we will look back on this time in history as that time the US lost it’s shit and did not elect a sociopath as our leader.

 

by krubesch

Triggers

“Ongoing experience convinces me that some children respond to pervasive emotional neglect and abandonment by over-identifying or even merging their identity with the inner critic and adopting an intense form of perfectionism that triggers them into painful abandonment flashbacks every time they are less than perfect or perfectly pleasing.”

Pete Walker

The only time I am in touch with my anger/rage is when I’m driving.  It always shocks me when I venomously yell out curse words or hurl insults at crazy drivers around me.  I don’t recognize my own voice. I have to stop myself from flipping people off.   It’s interesting to me that this is the one situation where I express anger. I guess it’s safe? Because I am in my car and it’s socially acceptable to have some road rage.  No one can hear me and I am in my own space.  Quiet  and calm Katie disappears when I buckle my seatbelt and put my car in drive. I’m becoming more aware of my habits, traits, and actions.

I mentioned in the my last post that I have started EMDR with my therapist and it’s been pretty intense.  I have also been attending DBT (Dialectical Behavior Therapy) class every other week.  Since I’ve begun processing events of my childhood I’ve gone from one regular therapy session and one DBT session to as many as three therapy sessions and one DBT session a week.  I’ve been gauging how I am doing by how many sessions I’ve had to go to in a week.  A four session week means that I am  not doing well and having to take each day an hour at a time.  The good thing is that I’ve been reaching out and asking for more appointments when I need them instead of “toughing” it out.

Since we started doing EMDR I am more aware of my anger and a greater presence of PTSD symptoms.  I’ve been extremely jumpy in my everyday life.  The other day Leah was driving and I literally jumped out of my seat because of brake lights ahead of us. I scared the crap out of both of us!   Today I’ve jumped when the office phone rings, when I hear a loud noise from the restaurant above our office, and when the bank teller surprised me.  I had forgotten what this feels like- always being on edge. I’m also not paying as close attention to tasks and everyday things as I normally do. I went flying over a speed bump that I did not see and took my car and myself by surprise.  Laundry, grocery shopping, and meal planning have been incomplete to my wife’s alarm.  She’s used to me being the one who gets most of this done. Sorry honey!   My therapist says that this is normal and that things are going to get worse before they can get better.  I’m just afraid of what worse means.  I’ve also been way more emotional and triggered by things that I would normally just let roll off my back.

I’ve found myself unable to cry when I feel like I need to.  I don’t know if this is because of the anti depressants or because I’m somehow not in tune enough with myself to let the tears fall.  I’ve recently started getting sad books from the library because when I really get into a book I am able to let the tears flow. I was not sure if this was going to work because I had not tried it with this round of drugs, but last night it did still work. Is this self-care? I’m not sure.   I am able to identify more with a book than with my own life. I’m not quite sure what this says about me.

Sorry if this is TMI, but my entire blog is pretty much “too much information.” I was diagnosed with a urinary tract infection yesterday and boy has this been the biggest trigger so far.  It’s all I can do to stay awake and present with the pain from my lady parts. I’d love to just retreat by going to bed and pop a trazadone to fall asleep until the pain goes away.   I’m really glad my therapist and I did not do EMDR last night during our session because I don’t think I could have handled having flashbacks along with this intense pressure in my pelvic area. It was nice to be able to go home and be with Leah and lose myself in a book after therapy last night.  I think reading has always been a welcome escape for me even as a child. I remember loving how reading could take me away from the present moment and into the lives of other people.  I felt like I had a relationship with others through stepping into their lives.  I’m still learning which of my coping skills are “effective and kosher” and which are not.  I know that in a way reading lets me dissociate from the present, but it also serves as a great distraction.  It’s a lot better than drinking, self-harming, or eating.

More info about DBT http://behavioraltech.org/resources/whatisdbt.cfm

by krubesch

Detachment

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“If you trade your authenticity for safety, you may experience the following: anxiety, depression, eating disorders, addiction, rage, blame, resentment, and inexplicable grief.”
― Brené Brown

Many of you might think that the gender roles are easy to determine in my marriage, but just when you think you might have us figured out we swap places.  Leah does remove bugs from our house, but I mow the lawn.  We both cook- I cook a little bit more.  We both take pride in a clean house and in decorating.  I comfort Leah when she cries, which is often and I also mend our clothes with my minimal sewing knowledge. I fix the dishwasher and Leah plants our garden.  I show people I care by my actions and Leah uses her words. Leah is sensitive and I’m more shut off, which is why I thought “zoning out” and not really having a wide range of emotions made me a more dude like woman.   I thought that I just fit that male stereo type, but apparently it’s called dissociation.

“Dissociation is a phenomenon most people have the capacity to experience.  It is a coping mechanism used to manage stressors as minor as over-stimulation or as severe as sexual abuse.  As a way of coping, dissociation occurs when the brain compartmentalizes traumatic experiences to keep people from feeling too much pain, be it physical, emotional, or both.  When dissociation occurs, you experience a detachment from reality, like ‘spacing out.’  Part of you just isn’t ‘there in the moment.’” http://trauma.blog.yorku.ca/2013/04/the-fragmented-child-disorganized-attachment-and-dissociation/

I’ve been numbing my feelings and zoning out as long as I can remember.  It’s pretty crazy to me that I didn’t know that I dissociate until age 32.  I have counted ceiling tiles, organ pipes, stained glass windows and hats at church as long as I can remember.  Even on the rare occasion I am at church now, I find myself doing the same thing.  Leah will often ask me what I’m thinking and I honestly don’t have an answer for her on many occasions.  We will also have entire conversations that I don’t remember even though I’ve acted like I was listening and given answers where appropriate at the time.

My feelings happen in extremes. I know I’m mad when steam is about to come out my ears, I realize I’m stressed and overwhelmed once I feel tears threatening to fall down my face, and I know I’m depressed when I contemplate the pros and cons of ending my life.  I know I’m sad when I feel that hollow pain in my stomach and all I want to do is cry or sleep.

This is why I feel like I have become slightly narcissistic.  My blog is pretty much all about my thoughts and experiences due to the simple fact that I am experiencing and noticing parts of myself for the first time.  I’m slowly able to notice when my emotions are not overwhelming which is nice, but also uncomfortable.  By noticing a wider range of emotions I am able to feel content, happy, and relaxed.  Along with these feelings come boredom, indifference, and slight sadness. It’s the boredom and slight sadness that are the hardest for me to experience.  I know how to handle myself when I’m in the depths of despair.  I’m really good at that, but just sitting with a twinge of sadness is really hard.  I found myself getting mad at myself because I “shouldn’t” be sad at that particular moment.  I’ve found that “should” is a dangerous word.  “Should” has dictated my entire life and it’s really annoying how much I am catching myself using it.

I can’t help but to think about my childhood more as I am becoming aware of the ways I learned how to protect myself as a child.  On some level I think that I’ve always had an attraction towards women.  I’ve always looked up to role models in my life who were women.  I thought I wanted to be Gwen Stefani, but in reality I wanted to date her.  It would have been problematic for me to have figured I was gay at an earlier age, so I am thankful that I protected myself from that information. It’s amazing how the brain works.  How it knows when the rest of the body is able and ready to deal with memories and thoughts that it had hidden away.  My therapist told me early on that I still have these issues to work out because I was not ready until now.  These issues did not present themselves because my brain knew that I was not ready.  That’s intense.

I’m an analytical person so I tend to beat a dead horse into the ground.  I research things that are going on with me such as side effects to certain medications, information about any ailments, diagnoses,or issues that I’m having.  I guess that’s the way I process and start to understand things.  I’ve had to work very hard in school and developed a great if not excessive work ethic, so it’s foreign to me just to accept things as they are.  Part of me wants to determine the aspects of my personality that I have because I was abused and what is just me.  Unfortunately I don’t think I’ll be able to find the answer, but I need to learn to accept myself simply for who I am.

Feelings Image taken from pegitboard.com