Hold On and Wait

Trigger Warning: Suicidal Thoughts

This week (September 10-16, 2018) is National Suicide Prevention Week here in the U.S. There is no denying that living with chronic illness is a daily struggle and can take a toll on your mental health… Especially when those chronic illnesses bring along with them chronic pain and other debilitating symptoms like nausea and vomiting.

Something I haven’t talked about here is my mental health. In 2012 I was diagnosed with anxiety and PTSD. I began working with a counselor and worked with that counselor weekly for about a year and a half when she made a crude remark to the effect of “getting over your trauma is similar to how a smoker stops smoking… they stop putting the cigarette in their mouth, you have to stop putting the thoughts in your head.” I immediately got up and walked out and never returned. I knew right then she wasn’t the counselor for me anymore.

I began working to more or less “self soothe” or cope on my own. I found comfort in fidget toys, quiet spaces, “control” (or the perception of control), keeping myself really busy with work (60-80 hours) and school full time.

I thought I had my anxiety and PTSD managed…

And then in the fall of 2015 I got sick and nothing we did helped. No amount of OTC medication helped… I actually got into trouble with one of my doctors for taking 7 ibuprofen in a desperate attempt at some relief… but that same doctor did nothing to help get my pain under control.

Thankfully we only had to wait five months for a diagnosis. I know some of you are thinking “ONLY” five months… and I was too… But in the months and years since my diagnosis I have met LOTS of people who have endured much, much longer periods of time without proper diagnosis which also means they have also likely endured that period of time without proper treatment…

BUT there is a HUGE difference between being diagnosed and being properly treated.

When I was diagnosed in January of 2016, my doctor was convinced he could “cure” an incurable disorder if I just got off my birth control and when that didn’t work out… SURPRISE! I just needed to lose weight and I would be “cured”. And by late summer of 2016 when I had lost 65 pounds but wasn’t miraculously cured but actually getting worse the more weight I lost… suddenly he wondered if I had been screened for clinical depression because this might all be “in my head” and not in the way that increased INTRACRANIAL pressure is in your head…

Yea, I was battling depression but the depression wasn’t causing my symptoms… My symptoms had caused my depression. Living in unmanaged pain every day had caused me to want to sleep all the time because it was the only time I could escape my reality… my very painful reality.

I was able to get in to another neurologist at RUSH Medical in Chicago a few months later and after a battery of tests she confirmed that I was not in fact crazy! But that day is one I will never forget because I learned a very important life lesson.

You see, I hadn’t seen very many doctors at this point and this facility is widely known for it’s research in headaches so I had really gotten my hopes up and she couldn’t help me. She said that while I was obviously sick. While I had obvious intracranial pressure issues… that I ALSO had “every type of migraine” which was news to me. And this made treatment more complicated… something she wasn’t sure about but was willing to give the “old college try”.

At this point we had thrown over $200,000 in insurance claims, deductibles, and co-pays at procedures, tests, and doctors appointments and I wasn’t willing to throw more at “old college try”… so we turned around and made the three hour drive home from Chicago with a lot less hope than we had made the trip there.

And that hopelessness hung around for a really long time…

I was really struggling to come to terms with the fact that I could very likely be living with this pain and condition for the rest of my life… And that is when PTSD and anxiety began to flare again and became unmanageable… along with it came sensory processing disorder and OCD and depression.

Sensory processing disorder first reared it’s ugly head by causing panic attacks during my favorite family activity… seeing Marvel movies in theaters. It then spread into other aspects of my life… causing irritability with repetitive noises or beats… so there is a lot of music I don’t enjoy as much as I used to and all music becomes grating to me after a while. I actually much prefer listening to podcasts and TEDTalks over music while I work now which is baffling for someone who used to be a band nerd. Loud noises and bright sounds are difficult to deal with so my favorite holiday, the Fourth of July, is extremely taxing and difficult…

I actually was unaware that I have OCD until my therapist pointed it out to me much later on, in a kind of “you realize that is OCD behavior right” kind of way… but none the less… if those behaviors are not engaged in… irrational thoughts and panic attacks soon follow.

And then there was the depression… that one really snuck up on me.

Not because I didn’t want to accept the fact that I was depressed. No. I had pretty much come to terms with that… I was trying to cope with that when the suicidal thoughts came out of NOWHERE.

and do you know what my primary care physician did when I told him? not a damn thing.

It took two physicians and three weeks for someone to get the ball rolling… and then it took three more weeks to get in to a licensed psychologist. SIX WEEKS after I initially warned my primary care physician that I was having suicidal thoughts I was able to see a psychologist.

I wish I could say things got better from there, but they didn’t…

When I was finally able to meet with the psychologist we discussed my medical history which included a recent significant seizure, intracranial pressure, and struggles with low blood pressure and high heart rate (what we now know was undiagnosed POTS) and those two things alone ruled out a significant amount of medications we could use for assistance so she put me on an antidepressant but she was worried about interactions so she started me on a very minuscule dose in hopes that it would be introduced to my body slowly enough to avoid any kind of adverse effect… but that meant another 4 weeks without any kind of real help. She also scheduled me to see a licensed therapist who specialized in PTSD (but not chronic illness), but unfortunately couldn’t see me for three weeks (seriously… what is it with this three weeks thing?). So we continued to wait knowing that if things got really bad there were several inpatient hospitals in the area we could utilize.

The day came and I met with my new licensed therapist. I’ll admit that I was pretty nervous. Things didn’t go well with the previous counselor and that was the only experience I had to base things off of, but we hit it off well immediately and she had a therapy pup that made the transition even easier. We agreed to continue seeing each other weekly until such time that we both decided it was best to transition to a different schedule.

Two weeks later I saw my psychologist again and she was pleased that the therapy was going well and that I had not noticed and negative interactions from the antidepressant so she increased the dose and asked me to return in three months.

And I continued to see my therapist weekly like planned and that was going well.

…But two weeks later I was sitting in my office at work and I realized that I had fully formulated a plan to kill myself. It completely snuck up on me. One moment I was crunching numbers and entering data… the next I realized that I knew how and where I was going to die, I just needed the perfect time.

I immediately started crying. It was all I could do to close my office door and call my psychologists office and leave a voicemail (because of course no one would pick up when you really need them to) letting her know that I would NOT be continuing the antidepressant and to please call me and schedule an appointment sooner than we had anticipated.

Then I called my dad.

I can’t entirely remember what the conversation consisted of… a lot of crying on my part and a lot of silent listening on his (because he’s annoyingly good at that sometimes…). But I can’t imagine how heartbreaking and scary that conversation must have been for him. Not knowing what the days and weeks to follow would look like… not knowing if he would come in one day and find me like that.

picture with dad during family photos spring 2017

My dad and I have been through a lot together. He knows me better than anyone because of it. We have lost my (step) mom and her dad, we have raised my brothers who have their own daily battles, we have battled my mental health, and now we are battling chronic illness too. To say we have been through a lot together is an understatement… He’s never once questioned whether my pain was real or “in my head”. He’s always been there at every appointment to back me up when doctors either aren’t understanding or don’t believe me. And as I lose more and more of my independence he steps up and doesn’t grumble, not even a little bit about driving me to and from work, the doctor, the pharmacy, etc. I could never ever put into words how much I appreciate what he does for me and my brothers… how much he has sacrificed for us… how much he continues to sacrifice for us.

And that’s what’s kept me here.

Because the pain and suffering that my dad has endured losing his soulmate and watching his children suffer in various ways is more than enough pain for a life time and I could never ever imagine causing him MORE pain and suffering… But that’s exactly what I would be doing if I were to go through with a plan like that… He has loved and lost enough. He has sacrificed enough.

So WE will battle this together…. It won’t be easy, but we will get through it together.

One thought on “Hold On and Wait

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