Tag / gratitude

by krubesch

Resilience

“The trouble with chronic pain is that it is so easy to become accustomed to it, both mentally and physically. At first it’s absolutely agonizing; it’s the only thing you think about, like a rock in your shoe that rubs your foot raw with every step. Then the constant rubbing, the pain and the limp all become part of the status quo, the occasional stabbing pain just a reminder.

You are so set to endure, hunched against it – and when it starts to ease, you don’t really notice, until the absence washes over you like a balm.”

Robert J. Wiersema

A year ago a surgeon changed my life. His bedside manner was a little brisk, but his expertise and willingness to listen earned my trust. Only now have I realized the impact my surgery has had on my body and my life.  On 10.24.2019 I had endometriosis excision, a hysterectomy (only kept ovaries), salpingectomy, and an appendectomy all at once.  I had been in chronic pain for over three years and had undergone 1 major surgery and 1 minor surgery in the 13 months leading up to this procedure.  

Prior to October of last year, I was exhausted, consumed by my pain, isolating myself, and feeling hopeless. I was not sleeping very much, had daily hip and back pain, and monthly abdominal and pelvic pain. I was hopeful that another surgery would help, but had learned from previous experience not to expect that this would have a huge impact.  Having my pain dismissed by over 7 doctors and my previous surgeon (and seeking treatment in two different states) had turned me into a pessimist (even more, lol) and I realize now that I was on the brink of falling into a major depression.  I was teetering at the edge. 

It is ironic that my three years with chronic pain had prepared me for living through this pandemic. Life is not that much different. We don’t make a lot of plans, I had gotten used to the solitude of canceling plans; as the prospect of sitting in an uncomfortable chair for even five minutes sounded exhausting. What is different now is that I want to have plans and see people (when we can’t!), I have been cooking from scratch, I have become a lot more physically active, I have taken up hobbies again, and I no longer feel hopeless about the physical state of my body. 

I am grateful I have a wife that was willing to travel with me out of state at least 5 times in order to find a doctor who could help me, even though we really did not have the money for travel expenses, multiple Airbnb and hotel stays, and time off of work.  She was patient with me, as I am sure I was not the easiest person to live with. Thankfully my surgery was covered by insurance and I did not have any surgical complications.

I have had some unexpected grief come up surrounding the permanence of not being able to have children biologically, even though we have decided not to have children. I did not expect the finality of this to affect me as much as it has emotionally. (I have found big decisions like this hard to make because I struggle over choosing the right decision and not messing it up).   I have found this to be true in other instances of grief, that the absence of possibility is very hard to accept.  That the option to change my mind is no longer available. Even with this grief, I do not regret my choice to have a hysterectomy. I know that it was the best option for me and I have reassurance of this decision everyday with the way my body feels. And also every month, lol.  That has been AMAZING and life changing.  It is like a little victory every month and feels like a prize I have earned. I wear my scars with pride. 

It is astounding to me that at least 1 in 10 women have endometriosis and there are less than 100 doctors in the US who know how to treat it effectively.  Of those 100 doctors, few are in network with insurance. This enrages me and has continued to make me vocal about endometriosis and become an advocate to anyone I know who needs to figure out how to receive effective treatment.  

Although I am not entirely pain free, I am 98% sure that my endometriosis was effectively treated and my current back and abdominal pain is caused by my hypermobility and not endometriosis.  I have been going regularly to physical therapy (well, minus a couple months during the pandemic) and am having to relearn how to hold my body when sitting and standing due to the laxitisity of my muscles and the toll that being in chronic pain has caused on my body. I no longer immediately panic that my endo is back when I have bouts of chronic back pain thanks to relief after physical therapy, although the worry hovers in the back of my mind. I don’t think this worry will ever completely leave my mind, as endometriosis is a chronic condition and can (although rare) come back after effective treatment. 

I am hopeful that this surgery and changes I have made in my diet and environment (paraben and sulfate free products for house and beauty), along with physical therapy and keeping up with my exercises will continue this upward trend in my pain and overall wellbeing.

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

Walls Falling Down

The best way to find yourself, is to lose yourself in the service of others.

-Ghandi

For those of you who don’t know, there seems to be an unwritten rule in healthcare (maybe it’s written somewhere) to keep patients at a distance.  You are supposed to follow OSHA guidelines, assist the patient to the best of your ability, to have empathy, but not let that empathy have a profound effect on your personal/ mental health.  Basically to not let emotions and feelings play into the relationship you have with your patient.  I’ve worked in the health care industry for the past seven years and I’ve been really good at this unwritten code.  That is until now.  I am currently a caregiver for a man who has Lewy Body Dementia and he’s completely undone the armour I thought I had in place at the beginning of this job.

I knew I would be great at this job because I have (at this point HAD is a better word) a great poker face and the ability to push my feelings, thoughts, and emotions away.  I’ve been told that people often think I don’t like them because of my cool, collected demeanor.  I just don’t show a lot of emotion one way or another.  When I began caregiving for Patrick in September I thought that I could handle watching him decline into the shadow of LBD.  I didn’t know him before he was in the midst of his battle so I didn’t have the memories of “old Patrick” to tug on my heart-strings.  What I didn’t count on was how I would develop a friendship with Patrick and I would/do feel my heart-break little by little as this disease takes him further away from himself and his loved ones.

I spend more time with Patrick in a week than I do with my wife, so it’s funny that it’s surprising to me of how well I feel like I know him.  I can anticipate his needs and can tell how our day is going to go simply by how our morning starts.  I know that we will be able to communicate and joke around more according to how long he stays in bed.  If I get to the house and he’s pulled out all his shirts, socks, and underwear I know we are both in for one hell of a day.  If he naps throughout the day, I know he’s going to be less restless and comprehend more of what is happening around him.

For instance, today has been a challenge.  Patrick tried to get up and dressed several times throughout the night and I can definitely tell he did not have a restful night.  There are no jokes, words I can’t understand and body movements have been difficult for him.  A big indicator that we were in for a challenging day was that I had to bend his knees for him to sit down and pants were extremely difficult to get onto his body.  He usually spends these kind of days watching hours of cowboys on the tv and is not interested in leaving the house or doing other things around the house.  He’s taught me that I need to go with the flow instead of having our days together planned.  He’s teaching me to be less rigid and more in the moment.  Days like today make my heart ache for him. I know that if I had these kinds of days I would be in the throes of a deep depression.  This ease and openness I have with him is only going to make me hurt more when he’s gone, but it would also make me feel less alive while he’s still in my life.

I think the face of healthcare could change if providers, managers, and staff weren’t as concerned about volume as they were quality.  Every practice I’ve worked with has had their goal be to maximize the amount of patients that they see.  I wonder what our health as a society would look at if we were more concerned about maximizing the quality of our care and establishing an actual relationship with our patients. I know that I am able to take better care of Patrick through establishing a relationship with him instead of treating him like a stranger or looking at this situation simply as a source of income.

For more info about Lewy Body Dementia www.lbda.org

by krubesch

Gratitude

 

 

 “Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend.”

Melody Beattie

One of my DBT skills I am working on this week involves making a gratitude list.  Since it’s November, I thought it would be appropriate to share some items that have made it on my list.  Leah, of course is always at the top when I think about the good things in my life.  We have a way of balancing each other’s crazy and I think to a degree we know each other better than we know ourselves.   My time with Patrick has accentuated how important it is for me to recognize the positives in my life and for that I am truly grateful.  Even though it is heart wrenching at times, I think taking this job is one of the best things that has happened to me.  I am able to get a perspective that I could not get while trying to climb up the corporate health care ladder.  There was not time to take a step back and enjoy life when I was leaving the house at 6:00am-6:30am and returning home anywhere from 6:30pm-8:00pm.  If I wasn’t grumpy from the long hours and endless texts, the traffic made sure I arrived home in  heinous mood.

I am learning important life lessons from Patrick that are necessary at this point in my life. Success is not as important as I once thought or maybe my definition has changed drastically.  Today I would define success as a happy home.  Nothing else really matters.  I can make all the money in the world, but if I can’t enjoy the time I have right now with my wife, than what’s the point?   I don’t know what’s going to happen in the future and making memories now might be my saving grace when life throws another curve ball my way.

Patrick has also shown me that men folk are not that bad.  I have to admit that I judge men pretty harshly.  One has to be an extraordinary man in order to make it into my inner circle.  I was taught at an early age that men are generally mean, judgmental, and unpredictable.

My father died nine years ago this month.  I tend to wrap my feelings into nice little packages and push them deep down.   I think I still have a lot of grief to work out not from the sadness of his passing, but from the death of hope.

My dad was ill most of my life.  I think he had his first heart surgery when I was six years old.  Fifth grade was spent predicting what kind of dinner we were going to have by which hospital my dad was currently living in.  Swedish Hospital has the best turkey tetrazzini by far.  We had to call 911 on Christmas of that year because my father passed out after being at home only for a couple of days.  That holiday was spent with my mother preparing my brother and I for my fathers nearing death.  My brother also had to learn CPR in case my dad passed out again while he was at home.  Within days my mother was teaching me how to do my own laundry in preparation for her departure for San Diego in hopes that my father would receive a successful heart transplant.  I would be staying at home with my 18 year old brother.  I remember a talk in the dark before my mother left that involved the idea that my mother may come back to us alone- without my father.  Fourteen years later my father died and I think I spent that entire time aware that I had to be prepared for him to die at any moment.

When I received the phone call that my father was in a coma and only had 24 hours to live I dissolved into tears.  I think in that moment it wasn’t necessarily my father’s death that was overwhelming, but all hope was gone of ever having a relationship with him.  I would never get his approval.  It didn’t matter how thin I was or if I lettered in soccer, or that I worked for straight A’s my senior year in college….my dad was dead and I never made him proud of me.

I am ashamed to admit that I hoped my mother would come back from San Diego alone or at least that my father would have a personality transplant along with his heart. It’s been a long time since I’ve thought about that time and I think working with Patrick has had me thinking and processing a lot about my dad. Towards the end my father also suffered from dementia so this dance with Patrick is somewhat familiar.  I’m able to feel and work though my emotions this time.  Patrick is not dangerous territory for me.  He is gentle, sweet and caring.  I don’t have to worry about what might come out of his mouth or the stinging impact of showing kindness to a man who did not show me any.  I don’t have any baggage with Patrick.  I’m ready every morning for whatever comes my way that day and I don’t have any expectations as to how clear or fuzzy he might be.  I consider it a good day when we share a laugh or a smile and it’s an exceptional day when that laugh also comes with the recognition of my name.  An added bonus is when that witty sense of humor comes out and we banter.    We like watching concerts together, going to the park with his family, looking at old family photos, and watching a good movie.

There is a DBT skill where you find the good in a bad/difficult situation.   I am grateful that Patrick is teaching me how to be present in the moment and to be more aware that moments are precious and it’s important to enjoy them instead of dwelling on the past or worrying about the future.

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