Tag / TMS

by krubesch

The Journey

The Journey

By Mary Oliver

One day you finally knew
What you had to do, and began,
Though the voices around you
Kept shouting
Their bad advice‚
Though the whole house
Began to tremble
And you felt the old tug
At your ankles.
“Mend my life!”
Each voice cried.
But you didn’t stop.
You knew what you had to do,
Though the wind pried
With its stiff fingers
At the very foundations‚
Though their melancholy
Was terrible.
It was already late
Enough, and a wild night,
And the road full of fallen
Branches and stones.
But little by little,
As you left their voices behind,
The stars began to burn
Through the sheets of clouds,
And there was a new voice,
Which you slowly
Recognized as your own,
That kept you company
As you strode deeper and deeper
Into the world,
Determined to do
The only thing you could do‚
Determined to save
The only life you could save

I have not felt suicidal for what feels like a long time (and probably has been a long time for my brain when I have not conquered a bout of depression).  For the past 2 weeks or so these dark thoughts have re-entered my mind with a fervor and this concerns me. I have been on the same cocktail of medicine for a year now, which is the first time in over four years that my medications have not been changed every 3-4 months.  This feels like a victory because it means I am stable (with the occasional trigger or bad week) and I have also gotten used to whatever side effects that come with this cocktail and have learned to live with them. Almost a year ago I started TMS (Transcranial Magnetic Stimulation), which along with this medication cocktail I am currently on, I credit with saving me from the depths of depression and probably my life.  Overall, I think the past year has been one of my best (of the past four) in terms of my mood and energy and this recent return of suicidal thoughts makes me worried. My wise mind reminds my emotional mind that thoughts come and go and most likely the reason why they have returned is due to the chronic pain and the increase in the severity of pain that I have been dealing with for about a year and 7 months.

The pain I am writing about began in September of 2016.  All of you who are squeamish about the reproductive system need not read any further!  It started with a UTI that lasted for about a month and a half. Although the UTI had been medically resolved with two rounds of antibiotics, my body felt like it was still there.  My symptoms were intermittent dull and stabbing pelvic pain and a feeling of pressure on my lower abdomen. Because I was and still am doing trauma work in therapy, my therapist, psychiatrist, and I thought I was experiencing body memories, which I had not heard of until then.  (For more information on body memories click here http://help4trauma.org/bodymemories.html).  After a couple of months of this pain and an increase in the frequency, I became worried and scheduled an appointment with my primary care physician’s office with a doctor I had seen once (my regular doctor was not available).  At this appointment it was very apparent to me that this doctor was in a rush and I was in the way of her lunch break. I explained to her what was going on, along with the information about my PTSD and working through that in therapy (which is hard for me just to tell random strangers and to talk about in general).  She basically dismissed my pain, told me it was probably in my head and ordered a strep test because I mentioned that I had a sore throat, but that was not the reason for my visit. She acted like the strep test was my consolation prize and that they would call me with the results. As I knew, the strep test was negative and my pelvic pain remained along with shame and embarrassment.

In the past year and 7 months I have been to 2 visits with primary care physician’s, 2 Minute Clinic appointments, 3 visits to a urologist who specializes in female issues (including one invasive procedure), 6 visits at my gynecologist office with two different doctors, countless dry needling visits and conversations with my boss and coworker (physical therapy office), and 1 visit to a gynecologist who specializes in endometriosis. I have been to the gynecologist more in the past year than in my entire life (seriously,one of the things I hate most in the world). The visits with the urologist and gynecologists left me feeling triggered for several hours to a couple of days.  I think I dissociate somewhat during these procedures and later on in the day my mind finally catches up to what my body felt and I end up feeling dirty, disgusting, and humiliated. Any other body part would be so much easier to deal with it really makes me angry that it’s my pelvic region.

What has been extremely frustrating is that in this whole process I don’t have someone overlooking everything.  My psychiatrist has told me to speak to my pcp, my pcp has told me to speak to my gyno, the gyno has referred me to the urologist and so on.  Even though I would think that my psychiatrist would want to speak to anyone messing with my hormone levels, as any change could affect my mental health symbiosis.  Everyone seems to be passing the buck to the next medical health professional. Honestly, my therapist and my boss have been the most helpful through this whole process and they are not medical doctors.  

In May 2017 I decided to try the Mirena IUD with the hopes that regulating my menstrual cycle would help resolve my pain and the hemorrhaging that occurs along with it.   I was pretty much pain free for 4-5 months with the Mirena (and period free, yay!) and then I started having back and hip pain along with the return of the pelvic pain. In February of 2018 I went back to the gynecologist, and she saw that I had a 3mm cyst of my right ovary and that this was probably causing my pain and could have been brought on by the IUD (a side effect is an increased risk of cysts along with a bunch of other unpleasant other side effects).  She did say that it looked like the cyst was resolving on its own and that I should follow-up in a month. A few days after this appointment I called her because my pain had not decreased and Tylenol and Motrin were not helping. For the record, it’s very hard for me to advocate for myself and I dislike calling physicians to ask questions. I hate asking for things in general. When she called me back, she basically insinuated that the amount of pain I was having seemed to be more (meaning that I was exaggerating or drug seeking) than what someone should have with a cyst of this size that was resolving on its own.  She called in a stronger type of Ibuprofen to the pharmacy and said that should help. It did not. When I went to my follow-up with her a month later, I still had the cyst, but it reduced in size to 1.5mm. Because I was still having the back, pelvic, and hip pain, we decided to remove the IUD at that appointment to see if that was the issue (as I had done extensive research about the side effects of the Mirena) and had never had back pain before getting the IUD.

Since having the Mirena removed in March of this year, I have had right eye twitching every day, pain in the palm of my hands, increased back, pelvic, and hip pain, bloating and have been unable to wear any pants that put pressure on my middle and lower abdomen.  I have had to buy 5 pairs of leggings and long cardigans and shirts so that I have clothing to wear to work! Although the Mirena was not the answer to my pain, it does appear to have helped some with my symptoms because now I am much worse now without it.

I am thankful that I have an awesome job and I heard a patient telling my boss about the doctor who had changed her life.  He was the 9th doctor that she had seen and she was so happy to share his information with me. I had to wait a month to get an appointment with him and saw him 10 days ago.  At this appointment he validated my pain and basically acted like it was a no brainer that I have endometriosis. He was surprised that no one else connected my symptoms with an endometriosis diagnosis. He gave me three surgical options to choose from and sent me on my way. The appointment and his conclusion happened so fast that I had to verify with him that he was sure and that I had heard him correctly. I don’t think I have ever happy cried like I did that day when I called Leah from my car.  I cried because I finally had an answer that made sense, that I was not crazy or making things up, and that hopefully my symptoms will be alleviated soon.

I feel like I have been on a roller coaster of emotions since then.  It is disappointing that there is not a cure for endometriosis, especially since it apparently is very common (almost as common as diabetes).  I go from being hopeful that treatment will alleviate my symptoms to wondering if I will be in pain until I go through menopause. I have scheduled a laparoscopic procedure for July 11th and I think the hardest part is going to be waiting until then when it feels like my pain is increasing and my comfort levels are decreasing.  All the doctors that I have seen are hesitant/ resistant to prescribing me anything for pain, which is frustrating. I have been researching what I can do on my own in order to be able to function on a daily basis. Getting out of bed in the morning has been particularly difficult. I am extremely tired and usually in a lot of pain. I have noticed that I am not enjoying activities and end up leaving early in order to be able to alleviate my pain and get comfortable at home.   This morning I felt especially hopeless and I wondered how I am going to be able to wait until July. The dark thoughts clouded my sunny drive to work and as usual lately, I felt on the verge of tears. I am reminding myself to try to take it one day at a time and to allow myself to be aware of my needs without beating myself up.

 

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

Enough

“We all have burdens we carry through life, grief and disappointments that we can’t change. But we can make them lighter if we don’t hide them, if we don’t try to bear them silently and alone.”

Joanna Connors

 I will Find You (P.235)

It’s been quite crazy and busy the past several weeks for a lot of different reasons.   I have had to juggle a lot of doctors appointments along with work and situations that inevitably arise in life.  My stepfather died on May 2nd after a year and a half battle with pancreatic cancer.   On May 1st I unexpectedly flew to Seattle to see him and be there for my mother when he took his last few breaths.  I am so grateful that the timing worked out so that I had a chance to visit and hug him the day before he died. Similarly to my father’s death, I had feelings come up that I had not anticipated.

In early April, when it was apparent he did not have much time left, I decided to write him a letter.  In this letter I wrote the things I wanted to say to him, but knew I would never be able to adequately say them out loud – as writing is my best form of communication.  When I sat down to write the letter- as usual, feelings and thoughts I did not know I was having poured out onto the computer. It often feels like my fingers keep all my feelings, thoughts, and secrets.  I will not bore you with all the details, but I wanted him to know how thankful I was that he came into my mother’s life and how he wormed his way into my closed off heart.  After my father died I felt like I was done with father figures (I had paid my penance and wanted to be free) and really wanted nothing to do with another one.  When my mother started dating Arnie and married him I would refer to him as “my mother’s husband” instead of my stepfather.  She married him long after I was out of the house and he was not my father in the usual sense.

Fortunately for me, Arnie was more than just my mother’s husband.  In a way he became one of my most important advocates.  He not only saved/repaired my relationship with my grandmother, but also opened doors in my relationship with my mother.  Arnie lived what he preached (an example of a true Christian) and this was evident in the way he helped me to navigate my relationships with my mother and grandmother as a queer person.  I was outed to my 98 year old grandmother by another family member and I was completely devastated.  I had planned to not share that part of my life with my grandmother because she was very religious and conservative and I just felt like it was not necessary to.  I had remembered how disappointed my grandmother was when she found out Rosie O’Donnell (big surprise!) was gay.  Anyways, Arnie and mom happened to be with her in Daytona when she was told that I was gay and he was able to sit down and speak with my grandmother and my relationship with her remained mostly intact until the day she died.

Arnie also made my mother happy in a way I had never seen before.  Her smile was real and bright and she had a little dance to her step. I am very grateful to him for this because she definitely deserved to have this kind of companion in her life.  He also had a way of saying what one needed to hear. During our last phone conversation he kept telling me that I was enough and that I needed to remember that.

I got back from Seattle on May 8th and then on May 9th I started my first session (of 30) of TMS (transcranial magnetic stimulation) and got an IUD in order to alleviate my possible endometriosis symptoms.  My TMS treatment is 5 days a week for an hour for 6 weeks. The picture featured above is a picture of me receiving the TMS treatment.  The black piece of equipment on my head is the magnetic device.  For four seconds it feels like a wood pecker (not painful, just a little uncomfortable) is vibrating on my head. Then there is 20 seconds of silence and it repeats for about 45 minutes.  During TMS I have been using the Headspace app to meditate for 10 minutes and then I listen to music or read a book for the remaining time. On Friday I finished my 9th session and I think it is having a positive effect on my overall mood.  It’s still a little to early to tell.

Prior to leaving for Seattle I had an EKG and found out that I have a prolonged QT interval, which is most likely caused by my combination of medications. Because a prolonged QT interval can be dangerous and I have a strong history of heart disease in my family, it was necessary to make some pretty immediate medication changes.  So along with the TMS and IUD I have been tapering off Lexapro and Trazadone onto Vyybrid and something else to help me sleep at night (have yet to find).  Needless to say it’s hard to determine what is responsible for changes in my mood with all of these factors happening at the same time.  I have been keeping a daily log about my TMS treatment and will be posting more about my experience with TMS once I have completed the treatment.