Tag / anxiety

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

Black Eyed Susan

“It’s because people are so perishable. That’s the thing. Because for everyone you meet there is a last moment when your hand slips from theirs, and everything ripples outwards from that, the last firmness of a hand in yours that every moment after becomes a little less firm until you look down at your own hand and try to imagine just what it felt like before their hand slipped away. And you cannot. You cannot feel them.”
History of the Rain, Niall Williams
Susan Posted this quote in her blog titled, “Ah Well”
https://susanmdougherty.me/page/4/

I know that Susan would write this blog post much more eloquently than I am able to and I keep waiting for an alert to let me know that Susan has written about her death on her blog, but she can’t because she is gone. I know what it is like to lose a parent at a young age and it feels like death has surrounded me for a lot of my life, as I have lost many people I have cared about. The difference between Susan’s death and others is that she suddenly passed away while in Spain on vacation (while I was housesitting for her and taking care of her new dog). Most people in my life have died long and slow deaths from dementia and heart disease. I know how to deal with death when it happens slowly over time, but sudden death feels so very different.
There was not any time to prepare or to tell myself that this could be the last time I would see her. I find that I get a lot of closure from telling myself things like, “this is the last time we are going to have a sleepover” or “this could be the last hug I give her.”

It’s still hard to fathom that our evening marathons of Pitbulls and Parolees will never happen again and that I won’t really be going back to the house that felt like my 2nd home. I know that these things sound silly, but so many of these thoughts keep going through my mind. I found myself thinking that I was so happy we finished watching the entire series of Longmire not too long ago. This was a show we started watching with her husband, Patrick, (I was his caregiver for the last 1.5 years of his life) who had Lewy Body Dementia. In a way watching Longmire made us feel close to Patrick and remember the days we all spent together.

My heart feels so achy and burny everyday and I miss her terribly. There are so many moments throughout each day where I go to text her and then remember that I can’t. I had no idea how often we communicated until now. Not only was she my wife’s boss, my former boss, a former classmate, but also one of my closest and dearest friends. I had no idea when I started caregiving for Patrick, that we would become so close. It all still feels like a very bad nightmare.

Susan was the kind of person who put thought into everything she did. She would surprise me with gifts that I had saved on my Pinterest boards for Christmas or my birthday. Her cards were meaningful and beautifully written and she made me feel special. There are not many people that I allow through my walls into my heart and I realize now that is because I have been hurt very deeply in the past and it hurts so much when I do- and something like this happens. This is when I hear Susan’s voice in my head telling me, “it is better to have loved and been hurt than never to have loved at all.” And I know she is right, I just feel like I can’t stand how much it hurts right now. I have been hearing her voice lately (no one needs to worry!) in similar situations. It’s pretty comforting that I knew her well enough to know what she would be saying to me now.

Memories of her consume me in the strangest places. The other day I was in the grocery store and it was like everywhere I turned she was there. I knew her in such an intimate way from working in her home that I am quite familiar with what she ate and how some of these items changed with the seasons. I am reminded of her with the Boar’s Head honey turkey in the deli, the peanut butter and chocolate Cheerios in the cereal aisle, the tiny potato rolls that she used for sandwiches, the pumpkin english muffins that she would eat for breakfast with cinnamon butter in the fall, and Nutella that she would ALWAYS have in the pantry that she liked to spread over Nabisco nilla wafers when she wanted a sweet treat. I also am reminded of Patrick with the chili Fritos, egg malt balls at Easter, and the pudding we fed him at the end of his life.

I am also reminded of Susan on a daily basis, by our new dog, Casey Joy (named by Susan)- who was supposed to be Susan’s new dog when she got home from Spain. I had picked her up from Lifeline after she got spayed and was staying with her at Susan’s house until she was supposed to return home. Leah and I keep joking about how of course Susan would die and leave us with another dog. When Casey acts up, we look at the ceiling and tell Susan to make her dog behave! Having Casey is a nice reminder, especially when she is cuddly and gives me hugs. I know that Susan is watching, loving that Penny and Casey are starting to settle into each other and laughing when we yell at her to control her dog.

I find myself looking at pictures of us over and over and re-reading all the emails she ever sent me. I have screenshot so many Facebook posts and texts that she has sent me over the years because I don’t want to forget her kind words and feel this need to fill this heartbreak somehow. I have been wearing the jewelry she gave me everyday and I freaked out today when I realized my necklace had fallen off until I found it in my car. It’s like I am scrambling to find anything that will make the ache go away and make me feel closer to her.

Something that no one knew, including my wife Leah, was that Susan was the person listed on my safety plan with my therapist. What is a safety plan? It’s an agreement I have with my therapist in writing about what I should do is I start to have suicidal thoughts and want to hurt myself. Thankfully, I only had to call or talk to Susan about 4-5 times over the course of about 2.5 years. She was amazing and so helpful when I would get in this head space. She treated me with love instead of fear and seemed to know when I was struggling even before I said anything. She often told me that she would be so mad at me if I ever hurt myself and I took that to heart. It’s really painful to know that I no longer have her as my person and changing that paperwork breaks my heart. I will be forever grateful to her for showing me unconditional love and being there for me in ways that a lot of people are not able to.

I am afraid that over time I will start to forget her voice or what it was like to be around her. She was also the only person who really understood what it was like caring for Patrick and she often told me that I was the only person who truly knew the ins and outs of his disease because we were both in the thick of caring for him on such intimate levels. It hurts that out of what felt like a trio of friends, I am the only one left.
I know that Susan would not want her death to derail the progress I have made with my depression and I keep trying to remember that as I feel like I am swimming upstream through a fog. I am extremely grateful and thankful that I have had the opportunity for the Dougherty’s, Patrick, and Susan to be a part of my life even though I would have liked to be able to have spent more time with them both. A lot more time.

It’s not the weight you carry
but how you carry it-
books, bricks, grief –
it’s all in the way you embrace it, balance it, carry it,
when you cannot, and would not,
put it down.
Mary Oliver

by krubesch

Try, try Again

“the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own”

― Mary Oliver

A lot has happened since I posted about my chronic pain in the blog post, “The Journey” in May. I wrote about my appointment with a surgeon who I was scheduled to have surgery with this month, but after that appointment I did a lot of research and listened to the nagging feeling that he was not the right doctor for me. My gut is 99.9% on point and when I don’t listen to that feeling I usually am disappointed and end up paying for it.  I am very glad I followed my gut this time because the route he wanted to go conflicts with a lot of the research on Endometriosis and would probably have lead to me needing to have multiple surgeries. Since February, I have spent countless hours learning as much I can about endometriosis in order to squelch my anxiety and to make me feel like I am doing something about my pain while I am just waiting. An acquaintance had a really bad experience with the surgeon I saw in April and had to go to another surgeon in order to fix the damage he did and address her symptoms.  She gave me the info of the surgeon that she credited with “saving her life” and I made an appointment with him towards mid May.

I was really hopeful that this doctor was going to be “the one” since he is in network with my insurance and located in Atlanta.  He was a lot more knowledgeable about endo than the other doctors I had seen, but still gave me conflicting information from what I had researched (through very reputable sources).  He told me that even if he did surgery, the endo would come back within two years and I would need another surgery at that time. In my research, I found that if a physician properly excises the endometriosis and removes any other areas affected there is a 10% chance of the endometriosis coming back.  I asked him to do bloodwork since I had not had any done in almost a year. He dismissed me and asked me, “what type of blood work should I order?” I wanted to tell him that he was the one who went to medical school and that a quick Google search would give him the answers, but I held my tongue. He also indicated that he did not think I had endometriosis and wanted to try me on a birth control pill for the next several months to see if that helps (since I had only previously tried an IUD).  Through my research I had learned that birth control does not necessarily stop the progression of endometriosis, but it masks the symptoms. I tried to explain to him that I was very worried about taking anything that might cause depression and mess with my mental health, as this is a delicate balance that I don’t want to mess with. He put me on Yaz and told me I could stop it if I had any mental health issues. I left that appointment trying to hold back tears and sobbed the entire car ride back to work.  I was disappointed that the appointment did not go as I had hoped and I felt slightly humiliated from yet another examination and having to explain everything that is happening with my body. I had hoped to feel like I was on the right track and that I was in good hands, but that nagging feeling in my stomach was still there.

After doing more research I decided to see my primary care physician to update her on the situation and to also have blood work done.  She was wonderful
(thank god!) and my blood work showed that my c-reactive protein level has increased and is high (this only indicates that there is inflammation somewhere in the my body and leaves me susceptible to a whole list of issues in the future if it remains high) and that my vitamin B12 and D levels were really low.  I started on some more supplements to address the vitamin levels and decided that I would pursue trying to get an MRI of my pelvis. Research and many case studies have demonstrated that endometriosis does not always show up on an MRI, but my thoughts were that at least we would know if something was visible or not.  I contacted the second surgeon, who put me on the birth control to see if he could order an MRI. Initially he did not want to, stating that it might be a high out of pocket expense to me. I let him know that I knew my benefits and that it would be covered because we had met our deductible and out of network deductible.  After I advocated for myself, he ordered the MRI. When I went to have the MRI done I got really faint, pale, and sweaty because the nurse dug into my veins to put in the IV. She acted like this had never happened before and that I must have done something to make myself react this way. A couple days later I was told that the radiologist read the results and that the only thing seen were benign cysts on my liver.

It’s been two months since I started Yaz and I absolutely hate it.  Since I started it I have way less energy, muscle weakness in my legs, worsening asthma, constant spotting, hot flashes, increased sweating, chills, pain in my hands and more visible veins. I joined this group on Facebook that is absolutely amazing and is run by a nurse who also has endometriosis.  That page has so much valuable information and research- along with a list of doctors worldwide who are trained and knowledgeable about endometriosis and have had countless excellent patient outcomes. From this list, I was able to find a group in Atlanta (who is out of network with all insurance, therefore very $$$) and several doctors in Florida.  I went to our insurance website and looked up any doctors that I think were feasible for me to travel to and to see if they took BCBS. I found a list of three doctors in Florida who were in network with BCBS. It just so happened that I was going to Daytona Beach in July to meet up with my family, so my hope was that one of the doctors in Orlando would be able to see me for an appointment that week.  All the stars aligned and I saw an amazing doctor in Orlando, my first day of vacation before meeting up with my family.

First of all this doctor is hispanic (yay supporting minorities) and a woman, which really made me happy and more comfortable.  She was really warm, listened to my symptoms, validated weird things happening with my body, and indicated that she thought the MRI was incorrectly read based on her exam.  She let me know that she was going to have her radiologist review my images and also she would be calling me to set up surgery. This past Monday I got the call that my surgery is scheduled for 08/01 and that the radiology did see that my right ovary is fused to something, which could be my appendix. I might have to have my right ovary and my appendix removed along with any lesions (of endo) that she finds when she opens me up.  

A lot of things are unknown, which drives me bonkers and heightens my anxiety.  We won’t really know how my body is affected until she goes in and has a look. That means she will have  several doctors on call during my surgery in case my bowels, appendix, and other organs are affected. She did assure me I would not wake up with a colostomy bag, which I appreciate and didn’t even know was a scenario that could happen!  My recovery time is unknown because of not knowing how invasive the surgery will be. We have booked an Airbnb for a little over a week with the assumption that I will be able to get back to Atlanta then. I am trying to tell myself that the money we are spending is worth it for me not to be one of those patients with 28 surgeries and the money we are spending going to Orlando is a lot cheaper than seeing a doctor who is out of network in Atlanta.

Since my appointment in Orlando, I have been feeling progressively worse.  I don’t know if this is because I know I am close to some relief or that things are just progressing.  I have not been able to drink my decaf coffee in two weeks due to nausea in the morning. I have been craving lemon/lime Gatorade like a mad woman and as of today had some dry heaving (fun!).  My body fluctuates from having hot flashes to chills and I am utterly exhausted each day.

What I have taken from this experience is that it is important to listen to your gut, advocate for yourself (even when it’s uncomfortable), and to seek more than one opinion when having a major procedure.  I have been dismissed, told that my pain is all in my head, denied pain medication because “I should not be in this much pain,” and made to feel like this is just a normal part of womanhood. This has been a frustrating two years and has opened my eyes about the faults of our medical system and how it relates to women.  I will no longer blindly believe someone just because they have credentials after their name. Accepting help does not make me weak and that it is a necessary part of life. I know my body best and I am now able to be an advocate for myself.

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

TMS

“Perhaps the biggest tragedy of our lives is that freedom is possible, yet we can pass our years trapped in the same old patterns…We may want to love other people without holding back, to feel authentic, to breathe in the beauty around us, to dance and sing. Yet each day we listen to inner voices that keep our life small.”
Tara Brach, Radical Acceptance: Embracing Your Life With the Heart of a Buddha

My last session (number 35) of TMS (transcranial magnetic stimulation) was on Friday 07/07/17.  I am really glad that I was fortunate and privileged enough to be able to receive this treatment due to insurance and a very flexible boss (THANK YOU INGRID!).  I can’t say that I am completely better and that it’s made a huge difference, but I think it’s definitely helped.  When I am in a bad place it’s really hard to remember my good days and when I’m in a good place it’s hard to remember how low and dark I can get.  In order to keep track of how TMS has affected me overall and on a daily basis,  I kept a log everyday with: the date, appointment number, medications taken that day, symptoms/ side effects, mood (1-10) before TMS and after, number of appointments each day (including TMS), activity done during TMS, and blood pressure and heart rate.  I am really glad I used this log everyday and included all of these categories, as it’s hard to keep track of it all.

What I noticed after 2 weeks (10 sessions) was that it felt like the wet heavy blanket of depression was lifting up and not weighing as heavy on my shoulders.  I had to take a good look at my log and my everyday activities to really determine how it was helping due to the fact that I have PTSD in conjunction with my depression.  The experience with TMS made it easier to separate the depression from the PTSD because the depression lessened, but my PTSD symptoms have remained.  This sounds like a bad thing, but actually it was quite helpful because I am aware now of the work I need to do and how PTSD affects my life separately from the depression.  I was able to tell that my depression had lifted because I have been walking the dog a lot more, I’ve had some good days and had that awareness, I’ve been upping my game on my appearance such as nicer clothing, wearing makeup, and blow drying my hair.  I’ve been more active with my social life and making plans with friends.  I’ve had more energy, which has enabled me to cook dinner and keep up more with the house.  There have only been a few nights since the end of May in which I have had to take sleeping pills (the first time in over three years!),  and I have been thinking more about my future and career goals again.  I knew that when I was looking back into pre-requisites and Occupational Therapy programs that I was definitely feeling better.  I have not made any decisions, but the fact that I am investigating is huge.

I wrote these two first paragraphs over three weeks ago and since then life has been extremely stressful, which has affected my anxiety and sleep.  My wife’s car was totaled on 07/09/2017 due to another driver being on his cell phone and thankfully she was not seriously hurt.  That is the silver lining. Pearly White, on the other hand was decimated and dealing with the other driver’s insurance has been a nightmare.  The added stress of being down one car, having to buy another car, dealing with his insurance company and ours, and ultimately taking on a car payment unexpectedly (Pearly had been bought with cash and we were going to keep her until her wheels fell off) has increased my anxiety level as a whole and brought sleepless nights and use of sleeping pills I had previously- proudly stopped needing.  Although I have been triggered by this huge event and other minor instances since stopping TMS, I can say that the heavy fog of depression has mostly stayed away.

This has lead to some serious work in therapy now that we are not trying to remedy the depression and keep it at bay.  Since the depression has lifted I have had longer and more intense flashbacks of the rape I endured as a 4 year old.  We’ve also been dealing with my ever present and immense feelings of shame and my relationship with my father. These have been very difficult sessions and I often feel like I have been hit by a truck the next day and have difficulty adjusting my emotions the night of.  Although these sessions are difficult and highly distressing, I think that it’s necessary (unfortunately, because if I could keep trying to avoid this- I DEFINITELY would).  We have not decided to work on these things in sessions, rather my body seems to be telling us that we must.  It actually amazes me how the simple act of focusing on my breath or closing my eyes brings on these crazy body memories and flashbacks during therapy.  I get mad at myself because they seem to come out of nowhere and it’s not like my therapist and I are specifically talking about the trauma or anything.  Because I get mad at myself, my feelings of shame increase, which seem to be the trigger for these flashbacks- and thus a cycle ensues.

Yesterday in therapy we were discussing kindness or compassion, and my therapist asked me to close my eyes and imagine people who I feel safe with.  Before I closed my eyes, I had the foreboding feeling that a flashback was in my near future, and as soon as I closed my eyes the familiar body sensations started and I was triggered immediately.  Once I told my therapist what was happening, she asked me what I was feeling and I told her that my critic was out in full force.  She asked me what it was saying and I told her, which lead to talking about growing up with my father (since he is basically the critical voice in my head) and soon after starting to speak about him I could feel myself leaving my body in a dissociative haze.  My dissociations have been different lately, it was like I was looking at my arms knowing that they were my arms, but feeling like that was not really my body and that those arms did not belong to me. If that makes any sense. It’s hard to explain. I’ve also started getting paralyzed (literally unable to move) when this happens, which totally freaks me out too. Usually I just numb out when I dissociate and the unwanted feelings go away.  This time and during the last therapy session it was like I was actually leaving my body.  I felt the sensation like I was falling away and that it was possible that I could go away from myself completely.  It’s a very unnerving feeling and makes me question reality.

This post was initially going to only be about TMS, but as usual, when I start writing I don’t know that I have a lot more to say.  I am including a video/podcast from Tara Brach that my therapist encouraged me to watch at the bottom of this post.  I found it pretty helpful as it relates to trauma and healing. One of my favorite quotes from the video is, “Those who are wounded in relationship, need relationship to heal.”  I think there is a lot of truth in that even though being in authentic relationships feel terrifyingly vulnerable and being rejected is my ultimate fear.

 

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.